I try to give an insight in my own life and dealings with rosacea. I also try to gather information that might be useful for everyone with rosacea, especially subtype 1 with burning, flushing and skin redness. I happen to be a bit unfortunate in that I have this condition for a long time already, and unlike many others, I haven't been able to get it into remission. I know it is more uplifting to read about someone who has beaten rosacea, but I like to write about the struggles that come for those who haven't achieved this. If this depresses you or scares you, it is probably best to skip my day to day life update posts here (which are only a fraction of all posts), and maybe stick to the rest of the posts, which gather information. 24th of August, 2013
Having a good time, spent all night with my friend M. at a big fair/theatre music festival in the park near my house, it was packed. We spent all night there, eating, chatting, watching people and saw my sister with her friends for some time, M's sister and friends and some other acquaintances. All the town (well the younger people up until like 50) tend to gather there for the week in which it runs. I'll write a little bit more about it a few paragraphs further. There were lots of cute kids and babies there too and M. is pregnant of her 2nd boy and has a massive belly. I hate having a burning face, not being able to be in the sun or wind or whatever basically, yet I like babies and children. I don't think I could take care of it all the time like my friends and sister does however; I need a part time baby lol. Saw my old eye doctor for night contact lenses and told him about the rosacea and he knew a lot about it and said I have occular rosacea too and lots of little (microscopic) crusts around the eye lids and that I need to wash them every night from now on with baby shampoo and little cotton pad stick, as the crusting will prevent the upper eye lid tear ducts from producing the right eye protecting substances so the eyes will dry out more. Mine are very dry indeed and often prickling and burning so that seemed good advice. He said that I indeed have inflamed and 'restless' skin, and in fact my skin was pretty calm again that moment! Hmmm :/ I am seeing a lot of friends with small kids these weeks, in between periods where I sort of isolate myself from the world and focus on working on publication and such. I have a couple of good friends:*S., my high school friend. We became kind of inseparable there and were in the same class, had side jobs together, went shopping, dancing together, on holidays and then also had a lot of phone
conversations once we were both in our own homes afterwards :) She is very pretty, slim and petite, long dark hair and is half Chinese and half Dutch; she is thoughtful, sensitive, very intelligent and has a strong sense of justice. I was very boisterous at the time, energetic, not really feeling part of the big group at school and sticking out a bit, mainly because I didn't share all their interests and with S I really found a match in many ways. We both loved reading, we listened to both Nirvana and the Smashing Pumpkins and classical music, we didn't like "fake" people, pretending in order to be popular. We felt we were way older than our age and contemporaries (I cringe nowadays, writing this down) and liked to revel a bit in romantic poems like from our heroes Byron, Keats, Shelley and the likes. But, we didn't like "goths" - gothic dressed subgroups - either, nor the alternatives who felt they were so different from the crowd but all looked the same to us with their identical dreadlocks and scruffy dogs (sorry, I do love dogs), similar clothing, acting and copy catting. So basically we were classical teenagers who looked critical towards the rest of the world and felt miles ahead and afar from everybody else, except each other. Later that all smoothed out a lot, thank god. We started at the same university and both rented a room in town (Dutch students don't go to a campus generally and rent a private room in the city, sometimes in a student house or even flat). Being still a bit weary of large, party loving groups of people, we opted for a student house with our own private room. I'll add some pictures of my room at the time. She was in another area of town than me but in half an hour biking distance. Dutch do everything on the bike generally, especially when living in a town. S. is a lawyer now and has been working in a very competitive and demanding firm for the past 8 years almost. She has a toddler and a baby on the way and we always stayed close, although we don't see each other as insanely often as back in the days. She saw first hand how I struggled with my rosacea and subsequent depression. She tried to listen and help but like basically everyone around me who doesn't have rosacea, it remained very hard for her to understand and advice me.
Nice, found this picture back today. Both black and white ones were shot by the big student magazine in town. They had a weekly item about students and how they lived. Not sure how they got to me but a professional photographer came to make shots (hence the ultra tidy room, I'm usually a messy pig :) ). On the bed my goose cuddly toy, which I got as a kid by my nan and where you could put your hand in so it became a speaking doll. Slept with it till age 25 or something..
of time at her house, she came over to mine, we had sleepovers, started using make up and went shopping for clothes together. We knew a lot of other youth in the village and visited parties and the local disco and bar, I played football (soccer) for years and we watched the boys play during the weekends. We didn't take too much notice of existing 'sub group barriers' and befriended people we liked left and right, but always had some degree of distance to it all, looking at it from an outsiders perspective and talking for hours about what we felt about it all. She works as a specialist in situations regarding family problems and abuse, and has also one toddler and a baby on the way. We stayed in good contact over the years and to this day, but when I was very low for some years, in my mid twenties, she did say she had a very hard time dealing with it and that it sometimes became too much for her. I understood but felt at the time that a lot of my friends had this stance, while I felt like I was stuck in quick sand. Now we are still close and it's very nice to have people like her close by. Even though they are not my own kids, their kids still feel familiar and I love being involved in their lives as well.
*J. is a friend who I met during my studies. I didn't have the energy to really succumb full force into student life, due to the rosacea and how I tried to avoid my triggers, while still figuring out what those triggers exactly were. She is naturally kind and supportive and insightful. We sat together often, also with other people who later joined us, and we went out in the town now and then to dance and go for drinks with some of our other friends. On one of my birthday parties at my place she met a friend of mine who I know since I was 12, another J. They clicked and became a couple and now have 2 young daughters, of which the oldest is my God daughter (aawwwww). He is a bit of a Lenin lookalike, very sharp and witty. I used to be part of a youth group, which hung around in our own building (read: shed) in the village, near the river. There we had a lot of fun gatherings, typically every Friday night and often we would also hit the village "party life" (which restricted itself to 2 bars and a dancing). We had an annual camp, usually going to one of the Dutch islands nearby for a week of drinking, games and fun. He was one of the elder ones there leading us with a few others and it was a fantastic time. Think early 90's farm people who were still stuck in the 80's, with punk hair and über relaxed clothes and unfashionable Lumberjack shirts and washed out jeans. We had game nights, would cross dress each other, disco's, quizzes, IQ tests and so on. There was a nearby Church (one of 12 in our very religious and very diversely so, small community) and being a bit reactionary, part of the group liked to get into 
mischief. I don't recall the exact things we did, but some of the mischief was to get rid of one of the letters of the name of the church. It was called De Rank, meaning something like The Rank. By removing the E and putting the D to the right it read DRANK, which means liquor in Dutch. The next day was a Sunday and quite a few of the church goers had to chuckle when entering the church :) Some of the older members had in the past performed crazier stuff, by replacing the swings and children's playground elements at the church grounds and pushing it all the way up to the flat roof part, installing it there. At these camps we learned to debate and to withstand mockery. At special theme nights, everyone performed alone or in small groups their self made songs or little stage plays. In the picture with me on the chair, J. and another group member sang me an 'Ode', saying in poetic terms how silly and girly and vein I was. Lament dressed up as Ode, basically. As you can see we all took it with a smile and at the end of the night everyone was buddies again and would laugh about it. It was a pretty good way actually to get used to real life I think, and to develop a thicker skin and self mockery. The annual holiday weeks were great as well, as we could go without our parents and the supervisors were Jan and his friends, who were acting more like equals and loved to go out with us to bars, drinking within strict moderation and playing games. There was always a mid night walk in the sand dunes near the sea, where we had to solve riddles and would look at the stars and feel very alive and invincible and all that stuff :) As a 14 year old I had a side job, cleaning J. house, when he still lived with his younger brother, who later became one of my closest friends and helped me considerably to get through the toughest of rosacea times.
I do long back to those days sometimes.Although back then, all we wanted was to grow up asap. But looking back, I think it was actually the best period of my life. So far, I should add, but I don't have super high expectations, given how the past decade has been. Back then I still was healthy, acted a lot more like my normal self, unrestricted by all sorts of skin issues, flushing trigger avoidance, puffy red face and overly worrying. I didn't worry that much at all, loved to have fun and wasn't afraid to explore and have that zest for life I guess that so many teenagers seem to have naturally. Nothing mapped out yet and you develop more into your future self every day. I am no longer care free, but maybe I gained a bit more consideration of other people with the years, as rosacea does seem to humble you a lot. But I feel at times like I am living the life of a retired person. Don't let the occasional updates and pictures fool you to think otherwise, most days of my week are spent in a cool house with a fan on and avoiding mid day activities, or any activities regardless when my face is painful and red. I did expect things to have improved by now, after 17 years of this shit, also in terms of available treatments, but alas. Seems that my 30's, which should have been the highlight perhaps, will just pass pretty uneventfully..
*P. is a friend who I met through another friend, Ernst. Ernst had a blind date with P one day and when he opened the door for her, legend says that they both started laughing and shook their head immediately, saying they wouldn't be a match but they stayed friends nevertheless. Through him I met her and she has been a very loyal and enthusiastic friend for the past 5 years. She is very different from my other girlfriends, very straight forward, no nonsense, outspoken and completely and utterly honest, saying everything she thinks immediately. I really like that for her, even when she has something disapproving to say. She has one son and when he was still a baby, she had a very tough time with PPD. I came over weekly or more often to take their son, in his first year especially, with me on walks and to play with him and give her some peace and quiet. I loved it, even though my rosacea would make it difficult sometimes to stick to promises. In the summer I brought my fan when baby sitting. The fondest memories are about taking him on walks through the city, he in his strapped baby sling on my chest, facing the street and loving it when we walked over the local markets. We would walk for hours. Later they moved to the Caribbean, Aruba, for some time for her partners work but are now very happy to be back in the low countries. We still see each other regularly for girls talks, shopping dinner or board game nights.
*Ernesto & C.
E, C and I have been close friends with each other since around 2001. We always felt a bit like the 3 young friends in a great French movie called Jules et Jim, from François Truffaut. We went on holidays together and loved going to the cafe later in the day for some drinks, laughs and to catch up on things or visit a concert or art exhibition. We tend to eat together and just feel really comfortable with each other. C is an artist and E has always worked in cafes in town and in social care jobs. (I never drink alcohol nor smoke, the beer and fag in the top middle picture were put in my hands by E and C to make me look less "boring" for the photo :)
It's warm here and not easy to stick to my promised appointments sometimes.
Here everybody moves per bicycle, especially in the city and today it was very warm, humid and sunny. I tend to need a few hours after waking up to be all cooled down and unflushed, but as soon as I get on the bike, in the sun (despite big hat, the sun will reflect from the street and the walls), and the warm wind, and I tend to get flushed anyway again. That kills most of the desire to get out all together. I try to plan a "rest day" in between appointment days if possible but living in the city center area its tough to be inside the house all day and night. There is music and there are people and things to do all around me. I really look forward to cooler fall weather for sure :) The festival yesterday evening was nice. It started off as an alternative thing, with free theater, music and cheap food and drinks. Now it draws in thousands and thousands of people. Plus is that its pretty cozy and there is a nice atmosphere but downside is that there is very little free theater left, although everything has become very expensive and sold out very quickly. We met at 6 and had a bite to eat, then chatted for a long time, walked around, sat down again, met acquaintances and our sisters with their friends, saw a group of Dutch politicians pass and guessed all their names, watched people, discussed tv programs we like and the funny crazy stuff that's on television these days and gave personal updates on things. It was good and I stayed for about 6 full hours there, which was possible because my flushing had calmed down. Finding appropriate food isn't easy at such festivals but lucky M. is into healthy, natural foods too so we found a nice goat's cheese salad bar. Last year we had also gone to the festival and had ordered a beef stew that was supposed to be rosacea friendly based on the listed ingredients, but it had a lot of pepper nevertheless, making me burn.
27th of August 2013
My nephew loves my hat, we had a brilliant day yesterday on the fair in town and then at home building houses with the Lego we bought him that day. More later.
3rd of September 2013
Skin is pretty calm, as long as I avoid the worst triggers. When I stay out of the sun, don't have it too warm in the house and use a small fan when I feel hot, my skin looks a lot less red than it used to before I started taking the mastocytosis medication. Made some pictures today, after a long day in the car, in the sun, and also some 'on location' (with big hat and sunglasses on). There I was a bit hot and more reddish but it cools down again rather quickly when I get back in the aircon of the car or at home. Obviously natural lightning for the pictures and no make up. These pictures were taken during the day, the ones below at the end of the afternoon. The lighting is different but I was pink all day and more pale when back in the house again. In the 3 pictures with the hat and sunnies, it doesn't look too bad, I can get a lot more red, but for some reason even this pinkness is burning. My skin and face feels hot and uncomfortable. I can feel the flush coming on, when the burning and warmth is crawling up. In the first, say 5 years of having rosacea, I didn't feel anything when I was this shade of pink. But nowadays, perhaps because of 14 years of flushing and over sensitive nerve endings in the face, even this mild redness is burning and hurting and throbbing. But, the good part is that the masto medication seems to keep me a bit less red. I still need to use a fan and avoid triggers but there is some improvement. But its no cure for me. Once I leave the fan, am in a hot environment or eat the wrong foods, have an argument to name some examples, the flushing still comes through.. :/ For more updates on the mastocytosis medication ´trial´ period, see my blog post Facial flushing due to mastocytosis. 6th of September 2013
"Dear Dr. T, I have used the 3 medications that you prescribed me (Inorial, Zaditine and pantoprazole) for about 5 weeks now and things are going pretty good. I still flush but not as much and my skin looks less red as well. When I get in the sun or in a hot room or eat certain foods or get upset, I can still burn and get red, but I think it has improved about 30%. My skin looks less red and angry. I add some pictures, first 2 are taken 2 days ago when skin was calm, 3rd one when I was in a hot car that same day (my skin burned but doesn't look as red as normal and it calmed down again quickly) and the last ones are what my skin looked like in the past when it went bad. I hope I can continue to take these 3. I still have to do the blood test... will do that soon and discontinue the medication first for some days. I have almost no side effects, like you predicted, apart from dry eyes. But I have ocular rosacea, so my eyes were already dry and burning. In the winter my rosacea is usually a lot worse so lets hope that this year will be a bit better in winter :) Thanks and I will make another appointment after the 3 month trial period. best wishes". - I emailed my dermatologist a medication update. I added some close ups of the pictures I already posted somewhere here, and while looking for past pictures I found some more that weren't posted yet, I think. They are all taken while flushed and sore. I can still flush and still do so daily but for shorter periods of time, maybe I have a few hours per day now that I feel red and hot compared to half of the day in the past. I still use a very small fan on low and at a decent distance when I work or sleep by the way. Pictures are at the bottom of my blog post Facial flushing due to mastocytosis.
7th of September 2013
I visited the beach with my dad this week. He will be 65 in about 3 weeks time and is very sporty. Always racing on his racing bike, or running marathons etc. He is an artist, makes paintings, furniture, design. My dad and I always get along very well. He was very supportive when my rosacea was totally out of control for years, always gave pep talks, came over to watch movies or drive me around on his scooter or bike to cool and calm down when things were really rough. Or have a nightly walk through town when the sun was down and I needed to get out and have some air and distraction. I have friends of course, but most of them really didn't know how to handle my dark moods and despair over my burning red face, and besides, I didn't want to show them how I really felt. We were all in our mid twenties by then and everybody was busy getting into serious relationships, starting to work or finishing university, going out and being generally excited about life. I was afraid that being as gloomy and miserable towards them as I was most of the day, would push them away. I think it would have. Now all that changed, as we are all in our thirties and generally a bit more considering towards setbacks and problems of each other. But my dad was really a life line so to speak back then. My mom tried to be supportive, but she lived in another part of the country and always seemed to struggle to deal with it. I usually felt that she would call me maybe once a week, or I had to call her and that she would brush over me telling her things weren't too good, when answering her question how I was doing. My dad has had periods of depression and at his side of the family, more relatives deal with restlessness, nervousness, depressive tendencies and skin conditions like eczema. No rosacea anywhere to be found in both families by the way. But he can relate to feeling depressed, and during my worst year he had just lost his middle daughter so in hindsight, having to be there for me and support me morally actually pulled him through the worst part and first year of grieving. He said that while we had dinner this week. My mom doesn't have experience with depression, as far as I know and she used to say (although losing a child surely has brought up a lot of grievance and melancholia for her). I often felt that unless I was in a good mood and positive, I really couldn't relate to her or even talk to her in a helpful way. But I know she did worry a lot about me and what I should do to improve things. She and her partner helped me pay for the IPL treatment (which made matters worse actually), and tried to help in more practical ways.
Anyway, my dad and I get along well and have similar interests, sense of banter and humor and I like to take him out every now and then. We went to the shore and spent a lot of time sitting in the shade, watching people swim and play at the beach. I was really drawn to a German family, building a sand fortress. They had 3 kids, I guess between the ages of 5-14. They had such a good time and the kids looked so happy. Then a big guy with a beard showed up, he looked like a big, trendy bear, and he had his daughter with him, I estimated her around 5. She was naked, something which is frowned upon nowadays with fears of people with bad intentions etc etc, but it looked really free spirited and like the way we all grew up in the early 80's. All kids our age were naked at the beach back then. This girl showed no shame whatsoever and she found the sea clearly very cold, but the dad was so nice, going in deeper, smiling and waving at her while staying close by and she would then jump into his arms. There is something about kids, that I like so much: the way they (can) accept you regardless, the laughter and the way they tend to like giddiness and silly things and make you look at every day stuff in a new light. I know there are hard things about it as well, it being draining to raise kids day in day out, having bad nights of sleep, tantrums and having to dedicate such a large portion of your time and energy in a lot of repetition, but spending time with the young kids of friends around me always makes me feel really good. Of course, small kids get big and
become obnoxious teenagers.... But I can't see the good sides of being
child free right now. Lets hope that passes soon :) Dinner wise I stuck to gluten free bread, salad and goats cheese with honey, was very delicious. It was great to be able to spend a whole day outside, covered with a hat and searching the shade obviously, but being out long hours nevertheless and only getting a bit warm and reddish. It subsided also quickly when walking in the breeze and drinking iced water. Normally I would blow up after eating such a lunch. Then later that evening I ate a bag full of cashew nuts and yep, I got really flushed from them. Someone wrote on the Rosacea Forum how important eating nuts are and despite knowing I don't handle them well, I still ate a full bag of them, thinking the new masto meds made me invincible... Feeling hot and nauseous :) No More Nuts! 
8th of September 2013
I've been reading about Lyme disease lately. This is a really good long piece about it, and the current epidemic in the United States. I was bitten by a tick once -that I know of- and had it removed in the correct way immediately after spotting it on my leg (not numbing it with alcohol, not squeezing it in any way) and I got out whole and had no blood in it yet (flattened it to see). But it still made me really scared and paranoid. A woman who's children I used to baby sit had Lyme and it had been undetected for years and years, until she had such debilitating symptoms that they made the connection and she was treated with antibiotics for a full year, or more even. I never developed a round, bull eyed rash on the leg and neither felt sick, but half a year later my rosacea was bad, I was tired constantly and I did ask some German specialist doctor to do normal ELISA blood test and a specialized Western Blot (or something like that) blood test. The first came back negative, but the second came back semi positive, but they weren't sure if it was from Lyme's disease or just a flu I had had recently or Pfeiffer's disease. At the time we left it as it was, as I wasn't feeling sick, just tired. I forgot all about it actually, until reading this article and watching this docu... Hypochondria kicking right back in again :) The tests they do for Lyme's are pretty poorly, and come down to interpretation of certain antibody levels: IgG and IgM. At the time they were slightly raised but I had a big scale array of immune tests done last year by a German Immunologist and looking back at the results, all my Ig's came back normal. Here it is further explained. So if you have auto immune activity for instance, that will also affect your IgG and IgM levels, making a diagnosis of Lyme's even more treacherous. So best to not even contract the Lyme's in the first place! If you life in a tick dense area, perhaps check your skin and scalp after returning from an outdoor activity, just to be sure... Having Lyme disease (or any other bacterial infection ticks can carry) on top of rosacea must be a nightmare. Here is documentary on it, its very good and also touching (and slightly frightening):
I'm actually shocked, watching this, not just about the poor information that's out there and the amount of patients who were not taken seriously, but as a European also by the amounts of money all these poor people had to pay mostly out of their own pockets, adding up to hundred thousand dollars for some. Being misdiagnosed again and again, having to pay for all sorts of treatments that weren't the right ones... In Europe there is social health care for most of us, with little costs to have all round medical care. So sad to see this docu, for many reasons obviously. They also explain how from the 1980's on, the US government allowed medical institutions and universities to patent and make profits from live organisms, resulting in hording and shielding off found information from other people in the medical world, in order to make money from it themselves, in private medical practices. So certain professors did medical discoveries, also on Lyme disease, and then using that information not to inform everybody else in the (medical) world, but to keep it all for themselves and monetize it. A great quote from the docu, which also applies to the ROSACEA research I think is this one: Whats commercializable is driving the research agenda in too many cases. Not whats medically necessary and what is medically useful." Lets hope this doesn't also apply for the new Mirvaso creme. I always check my hair and skin after a long walk, even through grass land. I picked several ticks off my hat over the summer and 2 from my hair (still crawling, no blood inside). Very scary.. Please pay close attention. Here is a good recap of the documentary. Here is a smaller section of the text (and interview with the documentary maker):
Frank DiGiacomo: There are moments when Under Our Skin felt to me like an episode of The X Files. I knew Lyme disease was controversial, but I was completely unaware of the politics surrounding the definition and treatment of the disease.
Andy Abrahams Wilson: Well, I was a big fan of The X Files, so I take that as a compliment. As a matter of fact, one reason that I was initially attracted to this issue is a conspiracy theory that the bug that causes Lyme disease was actually engineered as a biological warfare agent. There’s a whole book dedicated to this theory. It’s called Lab 257 [Subtitle: The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory, by Michael C. Carroll]. Lab 257 was, or is, an animal research laboratory off the coast of Long Island. There was even a Nazi doctor who was hired to run the lab after World War II, and he had previously worked on biological agents using ticks as possible carriers. And Plum Island is right across the sound from Lyme, Connecticut, which is Ground Zero for the disease. So, there’s a lot of circumstantial evidence, but we weren’t able to find the smoking gun so we didn’t even include this in the film, but that certainly piqued my interest in the beginning. I was going to say, despite my X Files analogy, there’s nothing outlandish about Under Our Skin. There are no mad scientists in the film, just a lot of really sick people and questionable medical politics. Were there any other factors that led you to make the documentary?
I had no idea how serious it was until a friend of mine here in the Bay Area was diagnosed with M.S. and then A.L.S., which is a death sentence, basically, and then, finally, Lyme disease—and it was only then that she started to get better. I was shocked that Lyme disease could do that. I was shocked that it was out here in California, because there’s an assumption that it’s an East coast disease, and that it had such a severe neurological impact. The more I looked into it, the more I uncovered untold numbers of people who were completely falling through the system and had the same story: not being diagnosed or being misdiagnosed; not being taken seriously; not being treated and not being covered for treatment because officially chronic Lyme disease doesn’t exist. There’s a researcher in your film who discovers that there might be a connection between Lyme disease and Parkinson’s, M.S., Alzheimer’s an A.L.S. For me, that was one of the most alarming and fascinating aspects of this issue, and why this is a life and death issue. We may not know people who are diagnosed with Lyme disease, but we all know people who have been diagnosed with one of those autoimmune or neurodegenerative illnesses. And if there is a connection, then that would transform medicine as we know it. Have you shown your film to any of doctors and scientists who are involved in the research and treatment of A.L.S., M.S. or Parkinson’s? One branch of our educational campaign is to reach out to the medical establishment, which is going to be very resistant. I mean, we’re challenging medical orthodoxy. So that’s why I’ve always believed it’s not about convincing the medical establishment. It’s about creating the demand from the bottom up. The good news is that. I’ve had people say, ‘The film saved my life.’ They saw the film, and they got the diagnosis and the help that they needed.
11th of September 2013
Skin has not been good the past two days. I blame it on making long walks in relatively warm and humid weather, eating too much yogurt ice cream (but defending that by only eating that for the past days and comparing it with a liquids only kind of detox tour) and yesterday evening I noticed the yellow build up of dead skin, like pictures in the seb derm post. So I gently removed it with cotton pads and bottled water, but the lose flakes act like a scrub nevertheless, making he underlying skin very red and burning and tight feeling. I hate how my cheeks swell up from the flushing, they literally seem filled with air in these pictures. Flushing less and being more pale seems to really deflate and flatten them.. One good friend now calls me his dear chipmunk :'( (although he picked that name from me mentioning it first, but nevertheless. Gosh we loved watching the Chipmunks as kids and with 3 sisters always battled who could 'be' who in the series, everyone wanting to be the cool red one, but my middle sister always ending up being the blue one with the glasses haha). Flushed most of the night and woke up red, but after cooling with a cold pack and a fan, it calmed down by noon and skin looks kind of pale again at the moment (fingers crossed). But despite mastocytosis meds (and still not knowing if I even have mastocytosis... still need to get it tested) I can defo still get very flushed and sore. It made me so crabby and miserable the past days, but in a way it might be good to be reminded of this underlying rosacea beast, as its probably here to stay. And I had also gotten slightly used to the flush less awakenings each morning.
Good news however; I got an ice making machine! It wasn't cheap but it makes delish yogurt ice cream (yep, the one I was trying to avoid haha), or any type of ice cream you want to make I assume. I pour my yogurt in it (prefer the firm Greek type) and a little bit of cane sugar and have the machine running for 30 minutes et voila :) The best FroYo! Today I mashed 2 banana's with the yogurt in the blender and then pored it into the ice maker and it was even better. Served it to some friends and everybody loved it, I might make a little street corner business of this one day perhaps. What better job for a rosacea patient than to be working as an ice maker. See the difference in cheek puffiness between these pics! Only one a half week in between.. *Update: after a month of "froyo", I figured out that it was the YOGURT in fact that made me flushed! Duh... I now make ice cream from rice milk and cacao.
12th of September 2013
Skin is still a bit red and tight, working inside all day on texts and messaging with some friends, but feeling good. Listening to depressing music too though.. Chicken or egg. I'll share the depri music here anyway :) Been discussing the 9/11 tragedy with a friend and how much of the official statements about it hold up in our opinion. Also not a very uplifting topic. Did find out that Condoleezza Rice is childless too however. Made a little file with other sort-of significant women of this world who remained childless or who adopted (yeah I know, that definitely doesn't make them childless, but in my mental ordening system that still makes them file-able), although Condoleezza didn't make the cut -don't like her too much-. As a way to not feel like a massive failure over it perhaps (or just too much free time at hand (not really actually) or too much stuck to this topic in my head (most likely). I realize it might make me look nuts, but rather not glamorize everything too much here.
Gilbert writes: “If you look across human populations of all varieties, in every culture and on every continent (even among the most enthusiastic breeders in history, like the nineteenth-century Irish, or the contemporary Amish), you will find that there is a constant 10 percent of women within any population who never have children at all. The percentage never gets any lower than that, in any population whatsoever. In fact, the percentage of women who never reproduce in most societies is usually much higher than 10 percent- and that’s not just today, in the developed Western world, where childless rates among women tend to hover around 50 percent.”
Gilbert speculates that female childlessness is an evolutionary adaption:“Maybe it’s not only legitimate for certain women to never reproduce, it’s necessary. It’s as though, as as a species, we need an abundance of responsible, compassionate, childless women to support the wider community in various ways. Childbearing and child rearing consume so much energy that the women who do become mothers quickly become swallowed up by that daunting task- if not outright killed by it.”
Not sure I would be very happy with remaining in that 10% and if so, how would I have to support the wider community? Would it make me feel even more useless if I don't do just that? Thinking about it, the only slight 'parenting' I have done so far is with my cats :)
I've been helping my friend in his B&B lately and it's been really nice to speak to different people over dinner. Today several walkers passed by and stayed over, as well as a very nice American man with his young son. His mother is a well known best-selling writer and self help coach/psychologist he told us, and they live together with her. There is something quite nice about the general American guests we have had so far, which distinguishes them from Dutch or French guests I feel. I'm not entirely sure what it is, but I find it very easy to set up conversation with them. This man as well, within minutes we talked engagingly about the years they lived in Greece, his ex wife, his hometown New York, movies and Gene Wilder. His really smart son (I guess 9-10 years old) was equally enthusiastic and knew a surprising lot about Pavlovian training systems for monkeys, the earth's magnetic system and how birds and bees use it, how elephants have memory and realize they are watching themselves in the mirror and a lot of other things he knew already very knowledgeable stuff about. I had been sitting downstairs in the cool air for some hours during the afternoon, and during dinner I felt my right cheek getting red and burning up several times. Although I rather left the table entirely and altogether at that point (purely because of the burning face part), I only got up now and then to rumble a bit in the kitchen and then have a ten minute 'cool off' downstairs with a cold pack and a fan.
I got used to all this, but rather wouldn't be dealing with flushing at all obviously, and drink wine like the rest of the group and eat the dessert with them which I made myself, but didn't touch. After some weeks of pretty good skin, I'm back to daily flushing episodes again, and I'm not sure why. Right now they are all making music upstairs and the nice American man is singing and playing "Hey Mister Tangerine Man" on our old guitar and my friend is backing him up on the accordion. I hope the cold pack makes me ready for another 20 minutes or so soon. I only get the cold pack or the fan out when there are people over who I really know well. Or else I feel too embarrassed and freakish. But even with people I know well enough, I feel uncomfortable and self conscious about it. It doesn't make great sense, because the old man who is over here now almost constantly rattles and spits (after a botched throat operation) and he doesn't seem to care one bit that diners notice it. And nobody should be affected by my cold pack in any way, in terms of sound, sensation.. Eyesight perhaps. Maybe it ruins their peace of eyesight. Yet, I still prefer to cool in private and pretend all is fine in public. Very frustrating.
I received a very nice email from a man, who wrote that he reads my blog and that he felt sorry that I struggle with the kids issue and the flushing. He told me that he and his wife postponed having kids for a long time and then just never got to it, and that they were fine with that now and have a very fulfilling life. It feels really good to hear about such couples or read about it. It's like I only hear and see about the small kids euphoria right now and of course that's only a certain group of people, spreading all that over social media or in your face when you visit them. I actually have a couple of female friends who don't have kids and passed the critical years for that, and they all seem very content and at peace with that, and leading fulfilling lives. Or when their rosacea prevents them from that, at least they have pleasant and close relationships. It's a process and I try to not think too much about it. I told my sister and my dad about the 'rosacea friend' who is preggers now and doing relatively good, and asked them if this should perhaps mean that I should take a gamble and try for it too. They both said 'nope'. My sister is very honest and says having kids is definitely not 'all that'. Yes, you are getting an overkill of cute great harmony stories from friends on facebook about their kids, but she says a whole lot of parenthood is extremely tiring, boring and demanding. And then there are the great highlights each day. But to please not glamorize it and to not underestimate the energy toll it will take on you. When you are needing so much isolation and cooling and life style adaptations as me, she would personally never ever even consider having kids herself she said. Never. And also, as my dad and she pointed out, you can find maybe 10 or 100 cases of women who did good during their 
pregnancies rosacea wise, but there are also those who did bad and gotten worse, and there is no way to predict in which category you will fall. And the previous worsening from simple hormonal changes makes them suspect the worst. So instead of hearing cheerful support, I got a reality check from them. Which is perhaps more honest and realistic actually. Anyway, enough about kids and babies. This was a very cool kid though. He wanted to see how I make home made ice cream, how the machine worked and if he can make it himself as well. He wanted to hold our rabbit Wally and cuddle it, he wanted to know everything about the cats and Mister Bassie (my red cat) and he has been an all round great little curious, adventurous boy here.I later went back outside and my skin stayed calm this time luckily. We chatted about a lot more subjects,
like the years they both lived in Greece with the boys mother, life in Greece, him raising his son alone now (they broke up and I got the impression she doesn't want to be involved or something), making magic shoe boxes, good movies about food or chefs who make food, Jewish life and his Jewish parents and grand parents, small town politics and making friends in life. It clicked and we spent between 18.00 and 2.00 with the 4 of us in the end, although I took some cooling breaks from it all, and conversation kept interesting. But I tend to get restless after a certain time of talking with people. I don't know why, but wonder if spending all that time alone, working alone behind the computer and the fan, getting used to not partaking in all sorts of social gatherings for so long because the rosacea made me feel awkward, if all that has resulted in me feeling most comfortable in the end being in my office, reading, working, internetting in a safe zone perhaps. I ignored the little cravings for isolation time tonight, because it was actually very interesting and there was a genuine connection with this adorable father-son couple. But I wonder sometimes if I would have been different in that respect if I never had had rosacea or other health issues. I might have turned out exactly like this, in social terms: happy to spend time with some really close friends and awkward around other people.. Guess we will never know what could have or should have or would have.
I also notice, that when my rosacea flares bad, or I feel sick in other ways, I switch off a bit to other things or worries. But when my skin acts pretty good for some time, like the past weeks, and those preoccupations with my skin sort of blend in the background, that I easily pick up a new problem to focus on. How self destructive... :) Like friendships I suddenly look closely at and which seem to have taken the back seat for too long, or financial worries, or wondering if I shouldn't be more social and set up an appointment with this or that person I didn't see for a long time. Or worries about kids or my family or relationships. But when I'm flaring and red, then all that is of no importance and I live more in the moment; how to calm things down. And when the flare has calmed down, it almost feels like a reward and the next hour or so I feel really relieved and relaxed almost. It puts all the real life stuff you were caught in before on hold, freezes it for a few hours or a day or more. That does feel good, in some way. A bit like it used to feel good to have the flu as a kid, and to be given the opportunity to lie on the couch downstairs with your pillow and blanket and to just stare at the bookshelf in the living room for hours. Or to ponder about all sorts of stuff uninterruptedly, because it was still only 11 am and this was such a breaking of habit from the ordinary stuff you would do at that time of day, that you almost didn't know what else to do with all that day time at hand, apart from pondering. A big bubble, that also felt good somehow, as you felt you listened to your body and gave in and set the time and your life on hold for a little bit. Every time my health and rosacea are really poor now, or even for a few hours of flaring, it feels like I go to that same state again. The whole world out there fades out and your own life freezes for a little while. It's both frustrating and calming. It makes life pretty simple and synoptic; deal with flush, try to stay cool, read something interesting online while you're at it. And it takes so much attention and dedication that I don't seem to worry for much else then. Like a big pause button. I wonder how many people find something like that hard to let go of, when their illness lifts and normal life takes over again. I now have at least an excuse to leave a party early, to separate myself from anything. And that's not all bad and negative, I am thinking now. (The great pictures are from Chr. Schloe)
15th of September 2013
I went to a museum today with a little gathering of close ones. We saw paintings from the impressionists and pointillists and old Dutch and Renaissance masters. It was fun and my skin was calm for a good part of the day, making it really enjoyable. As a result I was relatively care free and upbeat. Some people started talking to me while we stood in front of a painting about the color use or the theme of the work, and I had no idea why they would do that, but it was not unpleasant. Maybe my less grumpy mood was reflecting or radiating off me in some way, who will say. Guards in the different galleries of the museum also smiled to me or asked me if I knew there was more upstairs and if I liked it there. Very odd indeed.
shoulder for even staying up and entertaining for a
full night, like last night with the nice American guests. Partly
because I manage to do that with a face that gets burning and
uncomfortable at times, and partly because I feel so exhausted most of
the time and partly because it made me feel good. I
guess it comes down to feeling a bit more sorry for myself perhaps, and
just being very tired and slightly stressed from the different types of
work and socially tiring things I manage to do, when I often feel like
staying in bed all the time. But as soon as you just act normal, ignore
those cravings, toughen up, the people around you tend to make a mental
switch too and crank up their expectations of you. Which is good in a way, you don't want to linger into apathy of course and getting up and about with normal every day stuff is the aim and not something which deserves a medal.
I have been really enjoying reading a very romantic and quirky and original
blog of 2 long term friends and designers, in New York, who set up an
experiment in which they would date each other for 40 days and report
about it every day and see what would happen. 40 days of dating,
have a read its really good. Although I'm personality wise very
different from the girl in it, Jessie, I do relate a lot with her
overthinking of things, perhaps slightly over dramatizing of things. Nevertheless women can actually create problems on the
spot that were never even there in men's mind. That can be the case here
too, and I truly try to program myself into being as relaxed and
laissez-faire as possible and to only make an issue of the really
important things, and let go of all the little meteorite dust, so to
speak. It helps a lot to be able to go out though, have fun with your
friends in the sun, distract yourself and feel in control over most
parts of your life. But on the other side, I tend to overlook the really
good parts about my life easily, and try to adopt a very positive life
style. Something most Americans I met seem to do effortlessly and
naturally, if only on the outside. I love it!A friend wrote that she also sulks and acts defensive when she doesn´t feel loved enough or being approached attentive enough. maybe a lot women do that.. I found in the early years that I could sulk and have some little tantrum fit and any bf would do all he could to patch it up and perhaps that becomes a habit for women? Its quite childish and convenient of course. The women friends I have mostly all are very down to earth, motherly figures, in control, reasonable. They don´t let their guys get to them, shrug their shoulders, say the sensible thing and I considered that for some time to be boring and complacent. But perhaps its just being an adult and a way to maintain healthy relationships? Guys are a lot less complicated often and don´t seem to like whining, trouble making and over analyzing. I try to remember that, leave the worrying and going over and over things that happened to my girlfriends or diaries and I honestly try to just cut to the core of things with men and not dwell on anything. Optimistic, proactive, problem solving etc. But it all seems a bit mechanical to me often when women are like that. Because I can´t believe that they actually are like that. I also chose often to take a little bit of time for myself when feeling unloved or not heard or understood, which often helps a lot to calm down, see things in perspective and also for the other to come to me and be like that as well. But its always a bit tricky as well to do that, because I have shouted at times `Ok, I´ll pack my bags then!´ and then being told ´Fine, as you wish´. Try to come out of that singlehandedly dug hole again then with some self respect :)
I liked the way the two designers from 40 days of dating added all sorts of moving gif images in their blog. I tried to find how to do that myself and tried out some silly things on the painting images :) The one of me flushing is highly exaggerated obviously.
17th of September 2013
Today was a little bit of a treasure hunt day. I was looking for old college notes, to help my cousin with her class speech about Renaissance art. I didn´t find the notes I needed, but did see a map with old pictures from my deceased sister, quite unexpectedly. I must have seen them briefly in 2005 perhaps, but can´t remember it. These were taken at her prom in 1998 and during a small holiday to Den Hague and Leiden in 1999, with her boyfriend at the time. It´s quite moving to see them again and to see her face. I also saw for the first time that she not only had managed to steal the white knitted cardigan of mine (which I in my turn had stolen from my very first boyfriend some years before, after he broke up with me and I was seriously love sick), but also the cream colored Colbert vest I used to wear a lot back then :) Oh J.!!!!!! It made me smile. Also a very old picture of myself in that box with old maps. I guess I was born with a hat on :) You know that you are back in the nineties, when the girls wear liver/brown colored lip stick, darker lip liner and cream colored clothes :)
20th of September 2013
My skin seems to behave erratically. Was pale and nice for some weeks and now its red and flushed again most of the days :( I have no clue anymore about the mastocytosis medication. I'm still taking all 3, as prescribed, but I don't understand why I got flushed and burning again, when I seemed to be on a winning streak with these meds.. Classical rosacea rebound maybe? Every time I think something is really helping, or get excited about adding a specific food or med or treatment, it usually backfires again at some point. Weirdly, often right after telling others about it or writing my dermatologist about the success....It could be anything stirring things up now. Feeling a little bit demoralized about it and discussed it with a close friend who also has rosacea and other pretty debilitating health problems.Reading up on remeron, one of the meds I take, I came across this review from Joe9090: "Remeron is great at putting you to sleep, but it is horrible for waking up. Remeron causes the worse morning depression imaginable. It is like waking up in a concentration camp. At least Ambien makes you a little cheerful. However, Remeron is monstrous in the morning. I have no idea how many lives this horrible drug has destroyed. My question is what in the heck where they thinking when this drug was concocted. Did they have any knowledge of how the human brain works? Keep it simple and take 1mg of Xanax. Stay away from this crap drugs like Zoloft(school shooting drug), Paxil, and Prozac(another school shooting drug. Why do people put this shit into their bodies. I am playing it safe with Ambien and Xanax, and staying away from the garbage." - These are some pics from the week of holiday with my father. We went to visit castles and despite it being warm and sunny, and me flushing badly most of the time, I still enjoyed it so much. I feel great when doing stuff like this.
25th of September 2013
There was a story
in the newspaper today of a woman committing suicide, after she had a
simple mole removed from her face, and ever since had experienced
burning pains. She wrote:
"Unfortunately I can no longer endure the physical pain of burning flesh in the face, neck and chest."
She blamed her surgeon for causing this. She had the procedure in November 2011. The article says that she had beforehand written to officials in the Swiss clinic Dignitas for help in ending her life. She complained of a 'regular stabbing pain' in her forehead and a face that was often red and painful. Her confidence had been left so damaged she said, that she was unable to leave the house. She also wrote to Dignitas;
"I have had enough of this hell and it is time to move on. (..) Therefore instead of facing daunting future prospects fighting with the condition I have now made the most important end of life decision."
Her husband said: "Obviously the impact from the surgical procedure had a huge effect on her and she was only
44. She was getting the odd line or two here and there and she hated
it. She was looking at her face every day. She would sit looking in the
mirror for half an hour to an hour every single day. I believe the blame
is down to the doctors and the clinic and I am going to pursue the
clinic for my Victoria. I want justice for her. I'm not bothered about
the money side, just as Victoria wasn't. She just wanted to make sure
that nobody else suffered like she did. I'm sure if she had had a bit
more care and aftercare she might still be here today. Before the
procedure she was fine. She was such a bright, beautiful woman." He
added: "It was only supposed to be a 25 minute procedure to remove a
small mole on her forehead. During the operation she said there was a
lot of blood pouring from her head. She didn't think it was normal. A
few weeks after the procedure she realized she had been left with a
scar. She wasn't happy at all. She presumed it would fade away in time
but it didn't. She went back to the clinic to complaint to the doctor.
Then the scar started healing, but she started suffering with pins and
needles in her face a few weeks after the operation. She kept going back
and they didn't want to know. To me I couldn't see much of the impact
of the operation. You could see redness in her face sometimes. She said
it was eased by a hot shower so she was always showering and putting
creams on her face. She said she was in a lot of pain. She described it
as a burning sensation on her face and neck and she would sit there with
her head in her hands and her eyes closed.
"As
time went on she became more and more determined to get back at the
doctor. She would say "I'm oing to get that b******. He has wrecked my
face." She didn't want other people to go through what she was going
through. She was always writing letters to different solicitors. She
wanted to sue on the grounds of medical negligence because she believed
she had suffered nerve damage. It went on for over two years. She became
very reclusive. She started reading the Bible a lot and wouldn't go out
anywhere. She didn't want to see anyone. She never gave any other
reason than her face and became a completely different person. Then she
started talking about suicide. She would say "I've had enough, I can't
cope anymore. I'm going to kill myself." I didn't know what I could do
to help." A spokesman for Transform Clinic said: "The treatment we provided in November 2011 was of a high standard
and this has since been corroborated by other independent medical
professionals including her own GP. Following treatment, we had
extensive correspondence with Mrs. Meppen-Walter. It was apparent her
issues were deeper rooted than with the actual treatment and care we
provided. patients concerns and after care are paramount to us and we
are very saddened by this tragic news."What a very sad story. It's impossible for the reader to determine how severe her facial pain really was. And how much of her distress was the result of the cosmetic side of it, and the lack of control. But this is how a lot of people with rosacea feel as well I think. In daily pain, with burning faces. It reminded me a lot of the reaction from Dr. Mervyn Patterson from the Woodford Clinic in Danbury, UK. He used an old IPL machine on my face, absolutely ruined it and I am still, 8 years afterwards, a lot worse rosacea wise than I was prior. He ruined my life afterwards and was the most uncaring, rude person ever when confronted with what he did. I can't believe this crook was awarded Best Aesthetic Clinic of the Year... See video here. His wife even says in the thank you speech: "we have happy costumers and that's the way we like it to be." The irony.
It's warm and extremely humid today and I'm flushed and burning and very red constantly :( Had
a horrid hot night and am still very red now. Promised to help with a
children's party from one of my friends, so got my nicest party skirt
and blouse on and hop hop, made a bike ride to set out a trail for them, with
colored lints to follow and hidden presents along the route. Was flushed
coming back in, and now have to set up drinks and cakes and help
supervise the games that will be played in the garden later on. Behind
the fan and cold pack for now in a bid to cool off in time, but seems
pointless. Boohoo :( Think
it went well though, one kid fell off a stair case (he was hyper active though
and didn't listen to warnings) and hurt his wrist, but some cold pack
worked wonders and he was up and running soon later. They did all old
fashioned Dutch games like 'pooping' a screw on a rope around their
waist into a small bottle, looking for cake on a string while
blindfolded and with hands folded behind their backs, candy memory etc.
Lots of cheering and screeching and fun. I was pretty rosy and after
like an hour of drinking iced water the flushing is so bad now that I
went inside with the fan. Enough for now and most parents arrived here
anyway to pick up their darlings. Been
eating more healthy, but so far no change in my skin. Had a tiny nibble
of birthday cake today and wham, instant flush erupted so that was a bad
decision as well. Eating vegetables and organic meat and some fruits
now and I feel the sugar addiction really kicking. Around 10 pm its at
its worst and I feel like I need chocolate or something sweet, but trying to be firm here and imagine pale skin for the next day. I found some recipes for vegan ice cream,
some look absolutely fantastic so will head to the shop for coconut
milk and other necessities soon. Picture taken tonight, after some hours
in the fan and cooled down again.
30th of September 2013
I stopped taking the 3 mastocytosis medications last week for 4 days, but found that the flushing and redness only became worse. I'm still not sure if the stuff is helping or counterproductive. Started all 3 again (on top of my regular medication) and my skin was pretty calm since. Until yesterday. Have been feeling flu like for the past week, with a sore throat and nausea, but it just lingered on a bit and didn't impact my flushing. Then the past 2 days its been pretty bad, with bad stomach pains and bad nausea and not being able to keep any food in. Face is pretty red and flushed on the right cheek all day today. Here are some pics of before that flu flare.
Gosh, reading an awful story about a Chinese schoolgirl being burned in her face by some scorned class mate. Awful.There is a very exciting thread going on on the rosacea forum,
where patients are testing the new Mirvaso cream. It is brimonidine in a
neutral base. So far it seems to make people pale for the first say 8
hours (not sure how long for everyone) and some get redbound redness and
some don't. Read here. And see here for the Mirvaso website. Find more info on Mirvaso on the Rosacea Support website.
7th of October 2013
My skin is a nightmare at
the moment. I am starting to suspect the mastocytosis medication are the
culprit. Its very weird, I feel more flushed and my skin feels more burning and
tight, but it looks not too red like 70% of the time. The other 30% I'm really
flushed, mainly in mornings and evenings. I think the stuff might make my skin
too dry perhaps, hence the tight burning feeling.. I don't know. Stopped taking
it a few days and skin was bad, started taking it again and skin was good for 2
days and then back to very bad again. All I know is that before I started
taking this stuff, I think I felt less hot and flushed and tight in my face. I
had many days where I felt flushed and hot and looked in the mirror and looked
only slight pink or even palish. Very werid indeed. Because of that, I have
kept using the masto meds, because looking not too red is good, right? But it
starts to feel very odd. My skin is not predictable like it used to be. I now
flush at other times than before, I am even getting ear flushings the
past week and its terrible, although not as bad as full face flushing, but when
my ears starts glowing I know its only a matter of time before the rest starts
burning too. I skin feels worse than it looks and sometimes looks worse than
during a normal flush, I think.. Not sure. I should have made one picture every
day for the past 3 months, one in the morning at a fixed time and one in the
early evening. That seems the only way to sort of objectively evaluate the
effects of it. I'll stop the inorial, pantoprazole and zaditine for a week or
two now, and see how that goes. 
I'm afraid that all those
antihistamines might dry my already dry skin out even more. Or that it creates
more histamine receptors somehow in my body/skin and makes me more prone to
flushing when stopping the meds even? Had a busy week with social
things to do and it has been tough. I'm stressed out about all sorts of work
I'm running behind with, got wrapped up in some forum about a tv program called
The Mole and spent too much time debating a mole suspect (yeah, for real...)
and analyzing shows. Was with friends all day today and flushed all day. The
good part of it all, is that they say I look so much less red and swollen now
than say 8 years ago. But I feel like I am very badly flushed and I didn't have
that before taking this stuff, only when really flushed. It's mostly about the burning sensation for me. Trying to ignore it
and bringing my cold packs with me to my sisters place and my friends places. Managed
to have a good time with them anyway and with their nice kids, who really don't
give a rats about the color of your face seemingly. I also ate very healthy the
past months, and especially the past week. Had a massive bout of flu the week
before and didn't eat much at all then, and the past week only vegetables and
some organic meat and fruits in the evening. 
And guess what, I think my skin looks worse. Bought some fries and Bounty icecream tonight, heck I was red already and I feel unflushed and more pale now, 2 hours after. This makes no sense.. Will go back to the old meds; clonidine (0,75 3 times a day), propranolol (40
mg a day), Xyzal (10 mg a day and Mirtazapine; I am feeling so good on 30 mg,
upbeat, cheerful, but I am more red and flushed for sure. Tried it several
times and always have the same effect. At 15 mg my skin is best but that dose
does absolutely nothing for my mood. At 22,5 I feel pretty ok, nothing too
great but decent, but seemingly more red than at 15 mg. Gosh we can't
win, can we?(Rant over :) )
9th of October 2013
It's my little nephews 2nd birthday today. Yesterday my sis and I took him on his very first train ride, to a nearby smaller city. He was completely hyped up. We would meet at 9 in the central station of our town and I woke up at 8.45, so that was a panic situation :) Rushed out, jump on the bike, raced to the nearby train station to catch the quick train connection to the main station and arrived just in time to catch the 9:16 train we were supposed to take. One cheek was pale, one was flushed and red. I normally have about an hour or so to sit down, cool my face, get the flushed cheek in question calmed down a bit but now there was no time, so I brought my cold pack with me in the train. The little man had been calling "Nalja! Nalja" when we met, he starts to talk now and calls me that, very cute. He loved the train, I took him for a walk through all the train compartments and he proudly walked ahead, smiling and goofing to people. In the city it was nice and quiet still and he could walk freely for a good deal, with one of us keeping closer track of him. We went shopping for clothes for my sister and me and for son's birthday. I had a little extra financially and because they are always so tight on money
themselves, she could chose some things and got a great dark skinny jeans, blouse and vest. Grins from ear to ear, which is always great to see in her. He wanted "everything" in the toy store of course, and had a preference for the mini cleaning set, hoover and cleaning maid outfit :) Too cute but his other aunty would already buy him that so we bought him some special talking cars. We sat down for some coffee and cakes (water for me) and he could run wild through the store then while my sister looked for birthday decoration things. Its cute, he wants me to carry him or do hide and seek with him or to give me kisses. Going there today for his real birthday, with my parents there too and other family. Not looking forward to the big group of people there but well. 
I also need to go to the hair dressers, but I hate all the peroxide and hair dye fumes swirling around there. It depends on the salon, one has it worse than others. Its enough to not make me go to the shoe repair shop, for the same reason (then due to glue and paint fumes). On holiday I found a hair dresser in a mall that had an open front, so the fumes were not trapped inside. I need a hair dresser like that :) Or make someone come to my house perhaps. Seems too much hassle for some reason to arrange that. I can cut my friends hair pretty good these days, he has curls though, but always complained that the hair dressers didn't listen to him when he wanted the top longer and the back shorter. I have been cutting it for him for the past 4 years and by now I go the hang of it and it looks pretty great, people actually comment him on his hair when its cut (yay!), but when I tried to cut my own it wasn't straight in any way, and when he tried to cut it, it was not straight either, having to keep re cutting it to make it straight, but it got shorter and shorter that way, until I was so upset I made him stop and leave it. Hmm.. Little birthday boy and the Terror Bunny Cakes we shopped ingredients for and hand made.
12th of October 2013
I have been off the mastocytosis medication for a couple of days now and I think its slowly improving. Still red and easily flushed but I managed to sit out 3,5 hours in a children's indoor play hall with Janneke and the two girls yesterday without major flushing. Skin was rosy for sure but not too warm to the touch for the first hour or so and then slowly got more warm and it burned maybe the last half hour. We were pretty active however, climbing onto the play things with them, jumping on the air filled Bouncy Castle I think its called in English, climbing and crawling through soft colored obstacles. The girls had a great time it seemed and I didn't give in to eat french fries along with them and only drank water :) I notice that the only way for me to lose weight (and I lost around 8 kilo's the past month or two) is to just not eat during the day.. I know that its unwise and unhealthy, but the remeron and antihistamines make me ravenous as soon as I start eating something and trigger the digestion perhaps that way? So, if I eat a pear, lets say, at 10 am, I am hungry for the rest of the day. If I eat nothing however, I don't feel hungry. It only starts when I activate the engine perhaps, not sure how it works exactly. But I tend to eat around 6 pm now, usually some organic meat or a lot of vegetables and some gluten free carbs and some fruit. Anyway, they had the french fries and all that comes with it here around 4.30 pm so I was getting hungry, but I am really trying to not eat deep fried food. Last week I came home at 9.30 pm and didn't feel like cooking anymore so biked to the 'Chippy' (French fries shops, you have them everywhere here, its a Dutch guilty pleasure, with lots of mayonnaise, Pulp Fiction style :) they were really good but I was more red the next morning and my flushing threshold had gone up, so I stay clear for now. I did find a really nice, frozen, low calorie, gluten free apple pie in the organic supermarket here so that's a treat now and then. The day before yesterday I spent the day with my friend M., who moved houses and now lives in a pretty great modern house just outside the city. She is 38 weeks pregnant and has a massive belly and baby. Its tough on her and her son is a sweet heart, but has a very strong opinion for a 3 year old and likes to implement it wherever he can. So they have some power struggles now and then. I felt for her; being heavily pregnant, they had a fast fuse house move last month and then doing all other normal stuff and looking after a toddler (is 3 still a toddler even?). Despite him going through a little obnoxious phase apparently, we had a nice afternoon, building Duplo/Lego houses and ships together and later I took him out to play soccer in the street, and within like 20 seconds after hearing the ball bouncing around, two other boys from about his age ran out to join. It was hilarious actually, all three real boys-boys, who wanted to be the best, loudest, toughest and fastest, yet they would cry when they felt the other was better. So we divided the times one of them could kick the ball, and it ended up in a sort of rugby game, but they seemed to like it and were screaming like Indians :)
I had to go to the eye specialist again today, as I am in the process of getting special contact lenses. I always wore soft day time ones, but now heard from my brother in law about night lenses, which correct the curve of your eye ball while you sleep, so that you have sharp vision for about 12 hours after removing them. I have 
gone from -3 to -1,5 the past week, so they are slowly starting to work. I still have occular rosacea and little stuff between my eye lashes and they clog the glands in the eye lids, so that could cause the gritty and dry eyes for me he said. I need to remove eye make up at night, rub the eye lashes clean with cotton pads and baby shampoo, then have some warm and dry compresses on my eyes in the evening and also be super vigilant with the contact lense cleaning. Aye aye.. I did all that last month but then got lazy and let it slip again. But, I have sore eyes and he showed me, after doing a dye test on the eyes, that there are some irritants in my eyes now, causing it all. I always have this cramped feeling there, because eye specialists usually touch your lower eye lids and upper cheek to get the eyes more open, and he also uses a disinfectant towel thingy to clean the machines you need to put your chin in and forehead against for the eye tests. I don't want that alcohol on my skin though! So I tend to fake that I am placing my chin and forehead against the machine, but in fact hoover a bit above and in front of it, They usually notice it soon enough though and ask me to place them firmly against the devices. I told most eye doctors about this, and ask them not to clean it with alcohol right before it's my turn (and I realize that this is usually a great gesture towards clients), but there are always new co workers showing up it seems. So, his hands were covered in that alcoholic, perfumed disinfectant and then he firmly planted his finger on the skin under the eye to pull the skin down and it makes me cringe and cower and shrink automatically. Please don't touch my skin. Anyway, it had to be done.
gone from -3 to -1,5 the past week, so they are slowly starting to work. I still have occular rosacea and little stuff between my eye lashes and they clog the glands in the eye lids, so that could cause the gritty and dry eyes for me he said. I need to remove eye make up at night, rub the eye lashes clean with cotton pads and baby shampoo, then have some warm and dry compresses on my eyes in the evening and also be super vigilant with the contact lense cleaning. Aye aye.. I did all that last month but then got lazy and let it slip again. But, I have sore eyes and he showed me, after doing a dye test on the eyes, that there are some irritants in my eyes now, causing it all. I always have this cramped feeling there, because eye specialists usually touch your lower eye lids and upper cheek to get the eyes more open, and he also uses a disinfectant towel thingy to clean the machines you need to put your chin in and forehead against for the eye tests. I don't want that alcohol on my skin though! So I tend to fake that I am placing my chin and forehead against the machine, but in fact hoover a bit above and in front of it, They usually notice it soon enough though and ask me to place them firmly against the devices. I told most eye doctors about this, and ask them not to clean it with alcohol right before it's my turn (and I realize that this is usually a great gesture towards clients), but there are always new co workers showing up it seems. So, his hands were covered in that alcoholic, perfumed disinfectant and then he firmly planted his finger on the skin under the eye to pull the skin down and it makes me cringe and cower and shrink automatically. Please don't touch my skin. Anyway, it had to be done.
Have been wrapped up by the Australian version of the tv show The Mole, this season. Its pretty addictive and there was a raging discussion on one of the forums there about Mole suspect A versus Mole suspect B. I am supporting the theories for the unlikely one of them and its a lot of fun to go against the general consensus there and to find clues for his hidden sabotages. I always watched the Dutch version too, you can find them on youtube actually when you look for 'The Mole NL, English' . Its something my sister and I are a bit fanatic in once its on the tele each year here and the Aussie one I now watch is pretty good too. The final is next Wednesday so expectations and tempers are rising lol and I used last night to make a little homage to my Mole suspect (and very good, clever contestant). Click on the play icon and it will work. Direct link to dailymotion. (Double click the grey play icon and the video WILL play despite looking grey now).
15th of October 2013
16th of October 2013
I stopped the mastocytosis medication around 6 days ago and my skin seems to get a bit more calm I think.. Less tightness and burning sensations, although the past week was a bad one, skin wise, nevertheless. Pictures are from the past week (3x, red, hot), and this morning (the light picture, calmed down+ obviously not (never) wearing make up and with natural light). As most people with rosacea might know, the way it feels and looks in real life (hence, very red and burned up) isn´t always reflected entirely in the pictures, but I was on fire here. Had to travel a lot in public transport the past weeks as I lost my drivers license and the indoor heat made my rosacea so much worse :( Spent a lot of time behind a fan with cold packs. Today skin is calmer; the last pic was early morning and by now the pinkness/redness has been crawling back up, but its not as red as the past week, thank god. I think the masto meds might have worked well and then made things a bit worse, to be honest. I blame that on the dryness they caused (don't forget, I already took a double dose of Xyzal antihistamine and then these 3 on top, ánd the remeron has anti histamine effects as well). Have been using jojoba oil, diluted with water, on my face, with exception of the inner cheeks (too sensitive for anything, I spare them). I think it has helped a bit as well. My skin looks and feels less painfully dry at least since stopping the masto meds. Am a bit disappointed however, that the high expectations and good initial results didn´t seem to continue. It´s so difficult to be certain the worsening was from those medication,as it went well in the beginning and because there are soooo many variables and so many potential triggers that could have caused this, instead of that medication. But I stopped and restarted now a couple of times and I keep having the nagging intuition feeling that I am doing worse the past months when I take the meds... So will stay away from them for a few more weeks and then re evaluate.
Some funny comments on the forum about this video from Birdie: "You say mirvosa, I say mirvaso...... "you say tomata, I say tomato..." Honestly, she has one tiny microscopic capillary? She appears unbothered, disconnected. From her face. She's just been working out or lifting boxes. Should the product have only been targeted to individuals with exertion reactions or " maybe a mild case of rosacea?" We have REDBURNINGFACES here!
" Now the president of Galderma has resigned and the first more critical article already surfaced. The journalist has been reading the Rosacea boards, wowwwww. We discussed it here. The news paper article: http://healthcare.dmagazine.com/2013/10/15/francois-fournier-out-as-galderma-u-s-a-president/17th of October 2013
My hat collection (well a part of it, the ones I have in this house). My most beloved I lost over the years. Its a bit like umbrella's, I used to lose them all the time as well in the past. Favorites lost are a green velvet like hunter's hat and my brown Indiana Jones hat (the one I wear in most of the Australia pictures).
23rd of October 2013
I'm doing a bit better I think skin wise than during the last weeks on the masto meds. My skin seems
less dry as well and I have enough calm skin hours every day to have been able to pick up my long afternoon walks, which feels fabulous. I used to walk 10 km every day and now am back at 7 km a day and no longer feel like I'm dragging dead weight along. I'm getting there again. Usually don't feel like going out initially, but every time I do, I feel better for walking, being out and pushing myself. The first kilometer or two I feel heavy and tired but then something changes and I get in the flow of it, feel l lighter, my legs go on auto pilot and its just enjoyable. I listen to audiobooks, to make the time pass sooner and now listen to A Song of Ice and Fire, the books on which Game of Thrones is based. I usually am not really 'into' fantasy books but I love the series so much that its nice to now find out what the original books are actually like. Apart from that, life is quiet at the moment. I'm typing out a stack of texts from 1880 - 1910, so they are all in very old Dutch. The Dutch language has been changing a lot over time, mainly in terms of grammar and in 1880 they wrote significantly different from 1900, so its daunting. Also, the texts are so long and dreary, they wrote so long winding and overtly poetic. It would be considered a joke if anyone would write like that these days :) It's charming and interesting in a way, but demands so much concentration. Every word needs second checking. I'm typing for at least 6 hours a day and it demands a lot of energy to not make any errors. Going out for a long walk is great therefore.
29th of November 2013
Had a few very busy weeks, with a lot of day trips with friends with small kids. Its cold now in Holland, around 6 degrees during the day and that means that the heating is up indoors. I feel a lot more flushed now, a lot more red and swollen and burned up. The constant change of temperature is -again, like every year- making the rosacea worse and being out on the bike a lot, with the cold wind, seems to really play havoc on my skin :( Even at home I find it hard to get my skin back under control and I flush and burn a good deal of the day now. Booo! There is an indoor playing hall for kids here and its pretty great; lots of massive slides and climbing playing stuff (appropriately named 'Monkey Town'). My little nephew gets all excited when he is there, jumping around, clapping his hands in pure delight, crying out loud and climbing like a .. yep, true monkey. My sister and I had a lot of fun and a good excuse to join him on all the things there, 'supervising'. It was warm there though and me rushing off slides and climbing up air balloon stairs wasn't helping so within an hour I was beet red again :( Its tough hanging on for an additional hour or two then, but I brought a cold pack and used it too. It was fun though.
I received a question from someone regarding the state of my rosacea right now, I'll post it here too in case someone also wondered about it:
"Just been on your website and noticed you say your face is calm and pale in the mornings. Does this mean your free of ALL burning and swelling in the morning also? Does it then get progressively worse throughout the day? Also do you work in a cold or warm environment? Once more did you really say that your face stayed in a flush state after coming off the contraceptive and use of steroid creams? As in your face exploded into full blown vascular rosacea right there and then and has never been the same since? Or has it got progressively worse over the years? Thanks for your time, appreciate it!"Me:
"Hi, some days I wake up pale (always use a small fan at fair distance for air flow), sometimes I wake up flushed and red. But when I wake up pale, the redness comes in after eating usually (despite having very rosacea friendly diet) or just once I get out and about and blood flow starts. If I wake up pale, I am still more swollen, but my skin can look normal and pale yes. I dont have a lot of permanent redness but a LOT of very recative and weak vessels and very easily turn bright red and burned up. I work in a medium cool environment, not too cold but 16 degrees is perfect for me. I had normal skin until age 19 when I had a very stressful period and stopped the pill indeed and started using corticosteroid cream for a few days. Then all of a sudden the flushing and heat started, full face but back then I would flush for a few hours at night usually and then the skin would go back to normal. Now, 14 years later, it is a lot more redness and flushing, all over my cheeks now instead of the temples and upper cheeks mostly in the beginning and I can flush 24/7 now. It got worse over time thus. Yes, progressive worse, but the IPL treatments I had made it a lot worse and I haven't turned it back completely since. Medication has helped me to get some control back and regulate the flushing and burning and that helps me to stop it in its tracks I feel, so I no longer feel it gets worse with every year. Controlling the flushing equals controlling the progression in my case."
Next question:
"Wow I just read on your site that your rosacea went into remission for a year?!!!!! Could you please expand abit on that if you don't mind? As in was it a
completely stress free year or something? Also were you still living in
the same area? As in was the temperature the same? Many thanks again!"
Me: "Hi again :)
"Yeh I did go into some sort of remission. I don't know what happened there, but I let go of my anxiety and stress and diets and had a very 'in love' year, relaxing, doing fun things and eating everything and for some reason, the rosacea was calm that year. I still flushed, like when we went out to dancing parties or clubs and I drank white wine, but I needed a couple of glasses and when I did flush, it would cool down again in a reasonable amount of time. I would opt for that rosacea state any day now! It was very bearable. But then it went all down the drain again when I got the wrong contraceptive coil (with hormones despite asking for one without) and also had a hepatitis A vaccination (which I fear triggered my immune system again) and I went into a big stress mode again, once I got acne from it and as soon as my face started to burn again. Back then I wasn't using remeron yet and I could really sink deep into anxiety and depression back then. Like some omen, I felt and knew that I was f**ked then and that my skin was back to point zero again. My bf at the time tried to calm me down and speak some reason into me but I was so petrified that I had ruined it all again, that I'm not sure now which factor weighed in most in the worsening of the rosacea at that point; the actual hormones of the coil, the vaccination or the sheer stress itself. After that it got really bad, lots of flushing and burning and I was seen by several dermatologists and one put me on doxycycline for 3 months (I believe it 200 mg a day, or 100 otherwise at least) and that made it much worse. I was red and flushed all the time back then and since those 3 months I developed worse bowel problems. So from then on it wasn't going well and I needed cool air again all the time and cold packs. Once I started taking moxonidine the flushing was cut back again a bit, but not enough and then in 2005 the IPL treatment with dr Patterson made it horrendous. Then in 2006 I started on the medication I take now and things are a bit better again but pretty debilitating still a good part of the year, but I learned to live with it. Phew, in a nutshell :)"Me: "Hi again :)
I saw a great movie yesterday, its called A Royal Affair One of my fav. actors is in it, a Danish man called Mads Mikkelsen. He played in many great movies, for instance Adam's Apples and The Hunt (must see), but this historical movie was really excellent as well. I love historical drama's and the actors were all very good here and the movie very good, both great in humor and drama and period style and dresses and photography and acting. And its a true story. Was so carried away with the story that its been lingering in my mind since for the past days. Film and the actor playing the mad king got a Silver Bear at the Berlin film festival and there is also a pretty good book on the topic, by Per Olov Enquist, The Royal Physician´s Visit. Try and see this movie :)
And now for something completely different :) Saw these photo's last week and literally couldn't wipe the smile off my face for a good ten minutes. Its lion cub Karis from a Scottish Safari Park, who was allowed to play in the autumn leaves. Too cute for words.
12th of December 2013
Wow if this theory is correct, Plato was somehow right all along with his Theory of Forms (and cave allegory). In this documentary it is all explained a bit more detailed and comprehensive:
16th of December 2013
My skin is soooo bad, the past week or so its been a nightmare, constant
red, ruddy, flushed, burning. I think its the winter cold or no vitamin
D as no sun or something, having seb derm all over my T-zone too and
cheeks are so swollen. Look and feel hideous. So sick of having a
burning face all the time. When my skin isn't too bad I try to have a normal sort of life, but when it's bad I don't go out too much, except for walks or shopping and I don't feel like socializing with new people much, only with my trusted friends and family. I lay in bed
all morning today and pondered on how great life is when you are healthy. There was a program on the tele last night; a neuro surgeon from the US, Eben Alexander. He had a near death experience when he was in coma, here is his story.
On a lighter note. I'm a fan of The Amazing Race, a reality/travel program. This years season (23) was really nice and my favorites were 2
cousins called The Afghanimals, I made them a youtube movie about their
race and they replied to me about it on twitter :) Nice. This is the link:
Jamal Zadran
Leo Temory
18th of December 2013
Happy birthday (would have been 32th) for my sister :) Plan for the next months is to start taking some more supplements. A friend with pretty bad flushing and burning says she finds some relief with licorice root, Grape seed extract, Red clover tea and probiotics. I ordered all that and also flax seed oil. Will have it in the house in a weeks time I expect so hope they bring some improvement in 2014. I also still have Lysine supplements here ready to try AND (sigh) still a months worth of Rifaximin. Dreading that med for some reason, probably because all types of antibiotics I have tried so far made the flushing and redness worse. Lots of new things to look forward to nevertheless.22nd of December 2013
I'm having trouble from hives (urticaria) on my face again. Like every winter lately.. It started with 2 nig ones on my cheek and I thought they were just pimples. Put some zinc cream on them but after a week they remained the same, swollen with fluid underneath and itchy, and new ones now appeared on my face, so it dawned How a chilly day can lead to a case of hives
The Cold Case Files
February 6, 2012 10:00 AM
By Pohla Smith Pittsburgh Post-Gazette
Pam Pezzin of Freeport was walking in the woods on a winter day back around 1989 when she broke out in hives all over her body, including her stomach, arms, legs and face. Over the years, she continued to break out in bumps when it was cold outside, and she suffered from symptoms of asthma, too. She had a period of remission, but the reactions resumed about 10 years ago. "It got severe again," she said. But none of the doctors could figure out exactly what was wrong with her until she saw allergy, asthma and immunology expert Deborah Gentile in 2009. Dr. Gentile, director of research, Division of Allergy, Asthma and Immunology at Allegheny General Hospital, told Ms. Pezzin, now 40, she has cold-induced urticaria, urticaria being medical-speak for hives. Cells in her skin were releasing chemicals that cause itching, swelling and redness. Winter takes toll on the skin. Even for people who don't have cold-induced urticaria, winter can be hard on the skin, says state-licensed clinical esthetician Jennifer Derry, who works in the Shadyside office of plastic surgeon Leo McCafferty.
Multiple layers of clothing and the heat from furnaces and hot showers and baths pull the moisture out of our skin and cause dehydration. "As a result," Ms. Derry said, "we see increasing cases of dry, itching or flaking skin." Moisturizers help the problem, but some people may need a combination of lotions and treatments to combat winter-beaten skin. "Humidifiers, fish oil, enzyme facials and hyaluronic acid serums are among the many options for patients," Ms. Derry said. "Hyaluronic acid is naturally found in the body, helping to moisturize from the inside out. By applying more HA to the skin, it helps to hold in more moisture." Her allergic response to cold -- even autumn's cooler temperatures can prompt her to get hives -- is so severe that sometimes her lips swell, her airways constrict, and she has trouble breathing. "I've been to the emergency room on multiple occasions," said Ms. Pezzin, a social worker. "They did administer epinephrine and breathing treatments, always breathing treatments, because I'm virtually closing up." Cold-induced urticaria is one of several categories of allergy reactions called physical urticarias. "It's an interesting phenomenon. There's a whole group of environmental factors that can cause urticaria," Dr. Gentile said.
"It's a medical condition in which the patient breaks out in hives, which are induced usually by various physical or environmental stimuli such as heat, cold, pressure applied to the skin, water, vibration, sunlight, exercise," said Andrej Petrov, medical director of allergy and clinical immunology in a division of pulmonary allergy and critical care medicine at UPMC. "These are all various, but usually there's a trigger that is usually readily identifiable." For example, Janet Zahorsky of Ambridge another one of Dr. Gentile's patients, has cholinergic, or heat-induced, urticaria. When she is exposed to heat, the 22-year-old College of Wooster junior gets hives, and the reaction is exacerbated by food allergies. If she is exposed to certain foods and goes out in the heat, her hives are worse than if they were just heat-induced. In some patients who get hives, it is difficult for the allergist/immunologist to identify the trigger. "But with physical urticaria most of the time you can sort of identify the trigger by doing a history from a patient," Dr. Petrov said. "Usually patients will let you know. ... They'll say, 'In cold weather I break out in hives. When I'm running and sweating I break out in hives. I carry a bag and where I put pressure I break out in hives,' so usually patients will have a clue." If taking a history doesn't work, sometimes the doctors can provoke the allergic response. For example, to test for cold urticaria, they'll put an ice cube in a plastic bag and press it to bare skin for five minutes. "Ten minutes later, they'll break out in a huge hive," Dr. Petrov said. The trigger for this kind of allergy -- cold, heat, skin pressure, etc. -- causes mast cells, or cells in connective tissue, to burst and release irritating chemicals like histamine into the affected area, causing itching, swelling and fluid leaking from cells.
Cold urticaria is divided into three subtypes and can be very dangerous. "Most common is primary, or essential, cold urticaria, and the hive is usually localized to the area of exposure," said AGH dermatologist Diane Inserra. Patients usually get it in early childhood and can have it for many years. "It can be very severe, and if somebody were just to jump into ice-cold water and weren't treated, [they can] have cardiovascular collapse and die." Treatment is usually a combination of antihistamines, although occasionally, Dr. Inserra said, doctors have tried using desensitization, slowly exposing the patient to cold over increasing parts of his or her body. In secondary cold urticaria, there usually is an underlying disease, like multiple myeloma, hepatitis or mononucleosis for example. Patients "don't just get hives but systemic reactions like headaches and very low blood pressure," she said, "and they can pass out when they're exposed." Antihistamines generally don't help much; instead the allergist works with the patient's personal care physician to diagnose and treat the underlying disease.
The third subtype of cold urticaria is familial or inherited urticaria. "In this the hives definitely burn more than itch," Dr. Inserra said. They also last for about 48 hours, as compared to the 24 usual hours of regular hives. The treatment is anabolic steroids because antihistamines "don't work at all." There are subtypes for some of the other physical urticaria, too, but "they're a little less complicated than cold urticarias," Dr. Inserra said. The exception is heat urticaria, which, she said, can be very complicated to treat. In most cases of cold urticaria, over-the-counter antihistamines do the trick. "Most do very well. If [one antihistamine] doesn't work, we switch to another or change the dose," Dr. Gentile said. For example, Jana Stachowicz, 27, of Shadyside, a dental hygienist who sees Dr. Petrov for cold-induced urticaria, takes 180 milligrams of Allegra twice a day and dresses in layers in the cold. "It keeps [the hives] to a minimum," she said.
But over-the-counter antihistamines didn't work for Ms. Pezzin. "I was taking copious amounts of Benadryl and rescue inhalers, bronchial dilators," she said. "I was taking Benadryl like you couldn't believe daily. I was really debilitated from this condition. Even a stroll to the mailbox would provoke it -- that's how sensitive it was." Finally, Dr. Gentile put her back on Xolair, an injectible for allergic asthma Ms. Pezzin receives from her doctor every other week. She had tried it before she was diagnosed with cold-induced urticaria, but the pulmonologist treating her didn't think it was helping and stopped it. Her symptoms worsened. That's when she went to see Dr. Gentile. "The drug was a miracle drug for me," Ms. Pezzin said. Dr. Petrov had a patient with cold-induced urticaria who had to move to a warmer climate, but that, too, is an extreme case. Ms. Zahorsky controls her heat-induced urticaria by managing her intake of the foods to which she's allergic. "I eat pretty much everything but rotate how much I have," she said. "It's triggered by the foods and if I don't eat them, I don't have the reaction. If I do eat the foods and have a reaction, I take Alavert," another over-the-counter antihistamine.
30th of December 2013
I'm doing a lot better skin wise :) I started taking 2 of the 3 of my mastocitosis medication again; zaditen (zaditine) and inorial (bilastine). I left the pantoprazole out, as I felt at the time that it gave me a really sore stomach and I wondered if the worsening I encountered after a few weeks of good results, might be due to only one of the trio of meds, instead of all 3. So far so good, I am less flushed and red and the hives have disappeared as well. Back to social busy life. Noticed that I can have the odd chocolate now without blowing my blood vessels up. I also use the UVB narrow band lamp again for vitamin D production in the skin and I have set the heating at 16 degrees everywhere, also in the bedroom. I feel that avoiding the really cold air actually helps (even though all I long for during a flair is cold air). Normally in winters I'm a mess, skin wise, since starting these antihistamines again (and not even watching my diet) I feel and look like my skin can be in summer. Hope it lasts :)
8th of January 2014
Dear friends, best wishes, We had super fun days with the disabled people. The big African guy was there again as a supervisor and he brought a very nice Moroccan girl as his help He is very relaxed and great with the group. This time there were 15 mentally challenged people we helped with and only two of them were females (Catherin I and II). Our friend X also came over to help and this time the atmos was nothing but great. Friend joked many times that he should join the group when he made silly comments. This group was particularly upbeat and nice, with some great characters. Lionel loved doing nothing more than to talk and announce things through the microphone we installed for the karaoke, all day. From 'Breakfast is starting" to thank yous for the kitchen and so on. He could talk like a market salesman. Some evenings he could charter most of the group to come sit down in the living room (light dimmed) and watch his spectacle: a half baked magician session, where he talked a lot and people waited an hour for every trick to end, usually waiting for a clue that never came. But he was ever so charming. Quite hilarious, he could go on forever but we tended to stop things after 3 hours, when half of the viewers had already dozed off quite literally. At the new years eve party, he asked me to cross dress him and we found an antiques dress from the late 1800's where only he with his tiny frame fitted in (stage name: Lola. Including red nail polish that didn't wash off anymore).
Philip was Jewish and had a principle of eating halal food, and preferably kosher. Because this demanded quite some reorganizing in the kitchen, he was fine with halal, but when we were preparing minced meat that was half/half, he would sneak into the kitchen with us and sign (he doesn't speak, only mimes and signs) that he wanted to snack on some of it. We would remind him that he couldn't eat that, as it was halal nor kosher, and he would point to the sky (well ceiling), put a hand in front of his eyes hahaha. Kind of a part time arm chair Jew, we would joke (as we say in Dutch at least, someone who does something part time when it suits him, usually pointed towards some more fundamental/ideological stuff where you'd expect the opposite). We had also received a box of Ferrero Rocher chocolates from a friend and thought friend X was eating them in secret, when the box got more and more empty, but then we busted Philip one morning behind the bar eating from them (mind you, he is huge) :) Things that stayed the same as before, were how the group would hurry to you in the mornings to ask what was for dessert later that day, or wanting to help preparing the table. That when you give them 17 plates, they always come back with 2 ("too many") after which they end up missing three in the end. There was a very sweet Asian guy named Tan, who was mighty polite and sweet natured. We played a Dutch game called Sjoelen, where you have to slide round wooden dices with force over a meters long wooden board with 4 holes in the end with different points. It takes some slight practice but everybody can play it and the group loved it and became very competitive and fierce, which was a laugh. Tan won most games, as he was very precise. It was hard to figure out for a long time why he was placed in this special needs group, but when we received a post card from him after the holiday ended, we could see in his child like writing and grammar use that there was at least 'something' with him. The group ate like construction workers; everything was scoffed down (with love) within ten minutes usually, and we made many more trips to the supermarket. Friend X enjoys his steady 4 course meals if possible, and he actually had to get to the table and fix his own plate before a course ended, or he would have nothing left to eat. But they told us many times a day how much they enjoyed the food, so that was lovely. Things we made for instance were: pasta Bolognaise, with red sauce (Tan wrote down Pasta Polognaise on the menu board lol), sauerkraut with potatoes, cassoulet, fish, Moroccan style couscous dish, shepherds pie, chicken piri piri, a big roast and many lunches with hot dogs, hamburgers, scrambled, fish sticks eggs etc. The neighbor who is from Swedish/American descent baked us lovely Swedish tea rings and chocolate pies every other day for dessert. The staff was a lot less stern as last time and allowed them double portions and "you stay stop"-amounts of whipped cream.
Highlight was an afternoon of indoor bowling. X loves the movie The Big Lebowski like me, but he had never actually bowled himself. Lots of long-winded back and forth talking, no he didn't need to play bowling himself, he would just watch. When we said the children's railings would be up, so your ball couldn't go out, he changed his mind and luckily so, as he was one of the most fanatical players of the bunch, especially after he started with 2 strikes :) It was nice to see the staff letting themselves go as well and joining X in Johnny Bravo like fitness-champion victory gestures and celebrations. Trying to distract the front runners, and not even with simulated competitiveness. X just missed out on the title but came second (beaming the full drive back home), and just like past years the person who could pinball the ball with enough force from rail to rail, finally hitting the pins from impossible angles, won. Lots of fun. Tan had a very precise throw and would hit the pins in a straight line and became 3rd. Catherin I became 4rd with equally straight balls, that moved super slow but always hit target. Staff ended in the bottom regions as usual, and definitely not by choice :) In the evenings we would have disco's and karaoke nights, with favorites being Boney M (Rasputin) and modern rap songs. On New Years eve we had some friends over and neighbors joining in and baked Dutch treats called oliebollen (sort of doughnuts with raisins, made from flower, yeast, milk and raisins, thrown in frying fat and baked into lovely 'bollen' (balls), dipped in powdered sugar.
We danced the Lambada with the guests and it was fun. There were some little disputes later on, when staff became tired and worn out, but nothing too bad. Philip had apparently made some derogatory remarks (gestures I guess as he never talks) towards the Islamic staff and that didn't go well there and he got a massive correction 'preaching'. We missed what was actually the heart of the problem. But then again, she was a good sport by joining Philip when we played him the Shalom Aleichem song and Hava Nagila, dancing along and being just great fun. At their departure we were sort of relieved to see someone cry again. (Guess we need to measure our belovedness from something). A previous year, one woman had thrown her arms in the air and started crying inconsolably, head turned to the heavens (no exaggeration) when the bus arrived. This time Jan was crying all morning and often on our shoulders, with lots of snot being deposited there (no problem). It was quite sweet. Then there was a late surprise when Philip was already standing in the bus and murmured "thank you' completely out of the blue.* It appeared he was shocked by it himself too, but we couldn't help but feel slightly pranked :) *He only used sign language normally11th of January 2014
Its horrible having to sit by and feel as if life passes you by and life as you knew it is gone. Someone emailed me earlier: "Sometimes I feel like I'm on the outside of a snow globe watching everyone else have a normal live inside of it and I can't get in. " I have that too and perhaps in this day and age we have it even harder, with social media like facebook etc, pointing us daily on what others do and what we miss out on. You need to tell yourself every time you think this, that everyone portrays themselves in the most favorable light.... For instance, my sister and a good friend are both on facebook and independently started to me about the other, when they both had babies; one said, wow your sister is doing pretty well right? It seems so easy and enjoyable for her, this first year (while she struggled a lot herself). my sister had a year from hell in fact and started about the same topic a few days later about my friend, saying the same thing :) You are fooled half of the time. I try to remember this when viewing it. But sure, we do miss out on a lot of good things now. I try to still go and travel every now and then when my skin can handle it and I can afford it, but I can't sunbath then and need a fan and a car with airco etc but it feels like making up for all the time spent indoors, suffering :/
But it's hard most of the time. We can't even take a hot bath and snuggle up in warm blankets for some relaxation, or forget about our condition on a holiday or night out for dinner, it just affects everything I feel. I always sleep with a small fan sort of nearby. The worse I am, the closer it has to be but I think overall its best to have it at a fair distance, if you can manage that, so that it doesn't give too much rebound flushing.. I also have the shower issue. I should limit it to a few minutes tops but once I am under its just so nice to be really warm and relaxed for a change (always cold and wrapped up in a fleece blanket normally once the fan is on) that I stay under it way too long and end up beet red (more red than normal). Do you also have that issue? I wonder, if that is from the thermo heating thing and your body temperature rising, or with the central nervous system or I also read somewhere that the hot water on your skin can release some histamine and that in turn makes us flush. I guess a combination, with the body heating up and vessels expanding as culprit number one.. I also have a hard time sleeping properly and often dream about the rosacea on top. The antidepressant makes me dream very vividly. Yeh I wrote that about the 15 minutes and it was my dad who always told me that. He always said that as long as you can enjoy 15 minutes every day of something, it is worth it. He was the only one supporting me when all this shit happened and nobody else seemed to understand or really care too much yet. I burned just as much initially but you didn't see it yet, apart from some mild redness. Later that changed obviously. Very painful period, I am sure you can relate? I was at my wits end and was only flushed, in pain, with cold packs, stressing to the point of trembling, no sleep, no hope, no desire to anything anymore and he always told me that if I had even 15 minutes a day of feeling ok, of seeing something interesting on tele that made me forget about all the troubles or that would catch my interest or give some joy, perhaps music, perhaps a meeting, or reading something, it would make it worthwhile. Him saying that means a lot to me, as he went very deep in my teens, over my parents divorcing. He knows as well what its like to deal with depression. It did help me shift my expectations of life. Being so low and so bad for some time, I now find it a bit easier to deal with bad periods. The medication definitely helps to not sink as deep again (touch on wood), which is the remeron -even though I only use the starting dose- but I know the risk is always there. If the flushing and burning gets as bad as back then again, I fear it will all return to how it was. I have been grinding my teeth a lot for some time now and have a very sore tooth. I always had great teeth and never had caries or fillings in my life, so have no clue if this is carries, a root canal infection or just the pain from putting so much strain on my teeth at night (unwillingly obviously). I'm petrified it needs treatment and that perhaps the dentist needs to fill it with something. What if that something causes me to flush? I had some ear cartilage inflammation for some time and had several biopt taken from it. My dutch doc wanted to fill one of them up with a filling material, gelatin was part of it, and I said I rather didn't as I don't handle gelatin well and was afraid it would somehow stir up the redness and flushing (was already quite bad from the infection). He said this was local, no problem etc. I was on fire to a ridiculous degree for a week and then had to go to my German derm who did the operation all over again to get the filling out and stitch it somehow. Skin normalized again then, but what if the same will happen with whatever they use to fill up problematic teeth? What if i need a root canal treatment, arrgggh. It feels like the choice about IPL treatment or not in my world; if I make the wrong decision here, will it be a path of no return after that with permanent worsening or not? I guess I can always ask them then to pull and extract the teeth entirely, but I dont want that either of course. Been googling like mad what happens with cavities and root canal treatments and what materials are used and which ones are people least allergic to. Will see my dentist somewhere next week, am feeling very stressed out about this. It might just be nerve pain from the teeth grinding and pressing, fingers crossed times 100..I know this rosacea can bring out depression.. Life is short however and I think always that you can be dead for a very long time to go. As long as you can hold on and find some joyful moments, or can help someone else in this life, its worth while. I would have never said something like that in my 20's by the way, I had a bit of the fast life before that and the lifestyle I have now seemed incredibly boring and dull and tedious, but at some point I guess I had little other choice. 
Your IPL story sounded horrible. I think its very understandable to feel some urge for revenge or at least to warn and inform others. For me it helped to get it in the open, so I have my story about this Dr Mervyn Patterson on my blog several times, I have it plastered on the rosacea forum and I even tried to comment below his youtube video's, but he removed it every time. IPL I think burned my epidermis, top layer, and caused new blood vessel growth where I was pale before. That never went away again. The inflammation might have also played a part in that. It also made my skin a lot more sensitive. It might have thinned my skin too. I don't know if it is fixable. For a lot of people it was, when they went to another doc with better machines and more knowledge. The less bad your rosacea is, the easier it seems to fix it. I feel I am photosensitive, Dr. Chrouch, who was really good I think, also thought that after lots of test patches and a 2nd IPL full face treatment which again left my inflamened and not improved, but it didn't do any damage it seemed, unlike Patterson's treatment. Chrouch also stayed away from the shallow 560 filter, after we discussed what might have gone wrong the first time. Maybe you can find relief with another derm, with v-beam? I would defo give it a try, but please stick to test patches first, of an area with some redness. Rushing into this puts only you at risk and test patches mean a waste of time for the docs but in the end, as you encountered, they turn their back at you when things go wrong so f&*k their protocol and stick to the safe route ;)Take care
14th of January 2014
My skin and rosacea are a nightmare. The past 2 weeks have been utter rubbish. Flushing and burning through the night mostly, constant struggle whether or not to put the heating on (avoiding the cold weather flush and increased redness) or opening the windows (its well below 10 degrees here a night). Waking up, groggy, trying to get the redness and flushing down with wrapped up cold packs and yet another fan behind the pc, reading my mails and working on my work. Then later in the day my skin usually calms down and I no longer flush, but am still red. If it's like that I go out for walks after 4 pm, but sometimes I am still flushed by then and can't go without the fan. Back home, taking antihistamines before dinner. See here (scroll down) if you like to see what type of food I make - the sushi was a one off by the way, I hardly eat that). Then typically dealing with after meal flushing and pre-bedtime flushing and the cycle repeats itself. I am using my vitamine D, narrowband lamp at the moment as I was already low in vitamin D levels in the summer, when I sunbathed an hour a day, let alone now in winter :/ Oh well, another few months and spring starts again.. With pollen and air related allergies.. Will start making some pictures of my skin again, have not felt like it at all. I just read the obituary of a Welsh woman, Frances Medley, 44, in The Guardian,
who suffered from MS since 2005 and found the pain, life restrictions
(giving up on her academic job for instance) and the outlook on more
detrioration too much to bear any longer She wrote a blog about her
final decision: Musings of a Contemporary Spinster.
Her friend Gilly Adams wrote her obituary and mentioned:
"The formidable reputation that she developed made her much in demand when she subsequently embarked on a freelance arts career. She worked as a consultant, mediator and facilitator, and rescued a number of arts organisations from disaster through her wisdom and hard work. There are many artists, dancers, theatre practitioners, writers and others who owe Fran a huge debt for her generous and unstinting support. Eight years ago, Fran was diagnosed with multiple sclerosis and, while she continued to work, her life gradually became unbearable to her, because of the loss of freedom and independence. Fran had an alter ego, the Sophisticated Spinster, who featured in her blog, Victorious Endeavours. The Spinster displayed a keen sense of the absurdity of daily life. She kept her illness at a distance by christening it Cruella and transforming some of Cruella's worst antics into wry and funny blogposts, albeit with a bleak undertone. It was important to Fran for people to understand the crucial distinction she made between suicide and ending her life at a moment and in the manner of her own choosing. She made a 10-minute film, An Explanatory Statement, which was shown at her wake, and also left a final blogpost, under the heading A Sophisticated Sign Off.
In this last blog post, Frances wrote:"Well dear readers the Spinster has decided to call it a day; Cruella has simply exhausted me emotionally and physically. The prospect of further rapid deterioration was both terrifying and not one I wanted to entertain. The Spinster decided to end her life in a manner and at a time of my choosing; I am very clear that, whilst the law might say otherwise, I AM NOT COMMITTING SUICIDE.
Her blog is very interesting to read, I feel so sorry for her suffering. There is also a thread going on at The Rosacea Forum about a Dutch person names Rositta, who claims to have cured 90% of the rosacea and acne patients who came to her. Most deemed untreatable by theirdermatologists, You can read the thread here. I posted on it and tried to do some research and translated some Dutch reviews on it. The claims seem too outrageously good to be true to me. I guess it shines through in my posts that I am very skeptical, but perhaps I am wrong. Just visited too many practitioners over the past 14 years making these claims and making things worse instead. Her treatment is a secret, of course, and there is a bit of debate on this forum thread whether or not it is credible or not. Have a look I would say. She claims that 2 weeks of ' intense' treatment with a sacret potion/lotion clars people permanently from rosacea, acne or eczema. In some patient statements I read that she opens the skin up somehow, with needles or making (superficial I hope) wounds to ' let the rosacea out', then closing the skin again with a clay like mineral mask for 2 weeks. Sounds very brrrrrrrrr to me.
21st of January 2014
The reason I am looking into dental cements and glues, is that I had bad reactions in the past to fillings. I had it with
the filling in my ear after biopts were taken for instance, despite telling the docs I
don't handle gelatin well, they put a gelatin based filling in the wounds anyway, which would dissolve by themselves in the ear. Two weeks later
I was so swollen and red and puffed up from it that they needed to
remove it again. I fear something similar might be waiting to happen with the teeth fillings if I
am not very careful about what materials to chose. My head
is spinning as I want to avoid having bad flushing from it, yet realize that this is slightly OCD type of behavior. But with a rational and logic reasoning behind it. So depressed and my teeth
hurt too. I am religious with teeth brushing, I never had a cavity and was told I would never get one now that I past my 30's and have such strong teeth. Wrong... I want sedatives, anesthetics, and realize they always make me flush, but that will wear off at least. I had it with the 3 times I needed a biopsy taken from my ear cartilage (suspected carcinoma, but turned out chronic cartilage inflammation). But something permanent in your mouth, like a filling or cement... I don't want to have to go back and ask them to extract the whole tooth, and I know I am capable of asking something like that when I flush ferociously for too long and suspect the teeth repair materials. I told the dentist this as well and he seemed to understand, such a nice man.
Arrggghhh, I
don't think taking all these meds, including antihistamines, is helping,
as they dry your mouth and saliva and I also used a natural toothpaste without fluoride for a long time. Now the assistant said I will need one with fluoride again. I hate having to do all this research and worrying over something as wide spread and common as a tooth filling. My best friend replied to my wailing and self pitied email about this: Noooo. this is obviously not the news you were hoping for but I
think its hopeful that you have a dentist who's going to use an
alternative filling material, I read the links and this is what Id use
too. The zirconium sounds excellent. Since getting sick I
became allergic to my rather extensive jewellery collection, all which
was pure gold and silver, and the theory is that even pure gold contains
small amounts of metals and nickel is the likely culprit. It sucks. So I
would go with the non-metal zirconium, it sounds quite hopeful even
though you are very sensitive and reactive to things. Its going to be an agonizing wait til you know for sure how you
tolerate the fillings, its generous and pretty nice though of your
dentist to see you after hours when he comes back from America, no
dentist here would be so accommodating, Europeans are better people it
seems to me. I am a bit hopeful you wont have problems. Is this the
first time you've needed any dental work done since having rosacea?
Sam mentions the local anaesthetic. Have you had that before?
When they operated on your ear? It should either be lidocaine or
lignocaine, Ive had this a fair bit and I dont have any problems with it
flushing wise, I had a reaction when they injected a lot into my back
and I got low blood pressure and felt like collapsing, after about two
hours I was fine and apparently it was a common enough side effect. I
dont remember flushing. Ive been really scared to go to the dentist since I had rosacea, I
last went two years ago and I was terrified I had cavities, I went to
the natural dentist, and my teeth were fine, but he filled a
small chip on my front tooth, I cant remember what he used but it was
fine also, it left me about $500 out of pocket though! I was hugely
relieved when I came back. I thought my skin would react horrifically,
and it didn't, I dreaded going for a long time beforehand. I have to go
again tomorrow but Im going to a normal dentist in my city, a little
scary. I refuse the fluoride treatments as well. I don't use fluoride
toothpaste and have used natural toothpaste for many many years. My
teeth (upto this point) have been perfect, when I had my baby teeth as a
child (and used fluoride toothpaste back then) I had heaps of fillings
but haven't had any cavities on my adult teeth. Will find out tomorrow if
that still stands! I have mild gingivitis (inflamed gums) and it
started when I got me/cfs 9 years ago, it goes along with chronic
illness very commonly, but the dentist doesn't think its a problem. I
would never use a fluoride toothpaste. Its a trigger for my skin. Medications which cause dry mouth cause dental problems. So
its very likely from your antihistamines and meds like you said. Im
suffering from a really bad dry mouth myself that started last year and
its horrible, I dont even know why Ive got it, but it will be
interesting to see if Ive got cavities now too. Its good you've got a plan B. If it comes to the worst case
scenario you can fall back on that plan and have the teeth pulled but I
think you've got high chances of tolerating the zirconium. Try not
to stress too much because you'll be more likely to react when your
stressed aswell. Im not very good at this myself! (take my advice, I
dont use it) but its a point to remember. Are you in a lot of tooth pain right now? Whats it like on a
scale out of ten like a 5 a 9 etc? Did they tell you why the cavities
are actually causing pain? Can you distract yourself or is it agonising?
Can you eat hard food? Are you already severely flushed from the cold
weather? Thinking of you :( xoxoxoxoxoxoxoxoxoxoxoxoxoxo
24th of January 2014
Had my dentist appointment yesterday, teeth hurt too much and my
dentist said to call at 8 am to say I was an emergency and he could do a
temporary filling in the teeth with the bigger cavity. I was PETRIFIED
but he was really nice. He is my dads dentist, a man of 63, really nice
and relaxed and I said he surely would use anesthetics and he laughed
and said NO, no need for that. He was right, he got rid of the cavity
causing problems and filled it up with a temporary filling, I asked what
was in it and its calciumhydroxide. No pain during the whole treatment.
Then at home called the makers of this filling material to check if
there really is no corticosteroids in it (my worst nightmare). They
couldn't give the ingredients but said it would have been mentioned if
there was as its an active ingredient. I have a nasty metallic taste in
my mouth all the time now but skin is the same, no bad reaction (but
still rosy and flushy but nothing worse or different from how I was). On Monday the 3rd he will give me a permanent filling and do the other smaller cavity. Saw the beautiful, depressing yet slightly uplifting
new movie from the COEN Brothers, ' Inside Llewyn Davis'. An ode to
failing artists. Oh and fabulous music in it, even from Mr. Justin Timberlake this time. Great role from Oscar Isaac. Still in debate with a friend if we like Llewyn or not.. Some who saw the movie really felt he was a massive jerk and loser, but I was really attracted to him and could relate with his struggles. Just his actions towards the cat at the end... was inexcusable! :) Dark movie, very interesting.
I am very curious and a little bit intrigued about this, and answered her:
"This sounds very in depth and super interesting. A nerve block. It sounds like heaven to my ears already. Can I share some of the info in your email on my blog? Nothing personal about it, only the technical part. It might help others in our tucked away corner of the rosacea field. I have to say, X-rays of my face made me flush in the past, but I had 3 individual X-rays of my teeth this week, which covered a big chunk of cheek parts too and face is normal, it had no effect. I am sure your cheek has a massive network of blood vessels by now, and I wonder and ponder a lot about this, and about ways to get rid of all these highways and side ways and alllll these extra blood vessels, making our life hell. Laser is too invasive for our skin and leaves too much damage behind I think, like hit and miss chemo therapy perhaps, that ruins a lot along the way. They can't cut the vessels out somehow? Blocking blood flow to them? Blocking nerves indeed to operate them? Very very very curious how this will progress.."
My friends correspondance with her medical specialists:"Hi X, Of course Ellison S. has never seen auto-immune issues show up like this on a face! How often does he get all this combined?
• Start with pale Dutch/Celtic skin, totally intolerant of sun, that burns not tans;
• Add a long (10 yr) peri-menopause with extensive hot flashes;
• Add 40 years of sinus infections, only resolved after doing extensive damage;
Then worsen things further with
• Over 100 laser treatments;
• Brimonidine vasoconstrictor eye drops, and
• A connective tissue disease, on top of all that.
How often does that come into his office? The flushing is worse on my face, but it's by no means confined to the face. The flushing is a whole body issue. Walking in temps over 68 makes my feet flush, hot as hell. A warm bath makes my thighs and feet flush -- again, classic erythromelalgia. I think the flushing is worst on my face because I've had about a hundred Intense Pulsed Light treatments from 3 different docs, each of whom swore he could remove the redness and pain. None of them tested me for a connective tissue disease first. I later learned that laser is contra-indicated for folks with connective tissue disease because they're photosensitive, so the laser just makes things worse. All of which is why I think we need to start by treating this as auto-immune. Just my two cents! Cheers,"
My reply:
"Dear X, I also think you might benefit from anti inflammatory medication, like plaquenil
perhaps, to calm down the inflammation in your facial blood vessels.
You need to find as many ways as possible to shut those vessels down and
close them up I think. Please let them do another ANA blood test;
values can differ from day to day so you should have 3 of them in a few
months time span for a reliable image. I was 1:40 in 2004, which is
borderline positive by most standards but can also still be seen with a
smaller % of the normal population, but nowadays I test 1:80 which is
positive. BUT... not positive enough for real action. But at least I
have a clear indication now that I have auto antibody activity, which I
aready suspected. Your 'case' sounds similar to mine, I am pretty sure
you have underlying autoimmune activity as well, which I feel acts like
a big fat oven, and triggers allergy like inflammation reactions to all
sorts of things. Hence the extra other illnesses. I have colitis and
Raynaud's and a form of arthritis diagnosed which is the proof of the
pudding I think, as auto immune diseases often come in clusters,
especially over time. You seem to have Raynaud's as well I am fairly
sure from your descriptions (but maybe you can have it tested?) and you mentioned other autoimmune diseases, like thyroid issues
and your degenerative tissue problems. Doctors need to open their windows
and see a bigger picture, its so frustrating that they want to stick to
their small specialization only usually. Big xoxo"
Hi dear, sorry
for my very late reply. I am so sorry you are suffering, still.... your
pictures, you are still beautiful but I feel the burning and pain from
watching them.. was this a bad flare or your ' normal' evening skin
state? :/ I also chose to do
whatever it takes to keep the flushing as limited as I can and thereby
trying to stabalize the rosacea. The more I provoke the flushing, the
worse I get. Its an awful dilemma to be faced with when still so young. I sometimes have ear flushing now which is no
fun either, althnough still more bearable for me than the full face
ones.. I am doing so so, not as bad
as earlier, maybe because here in my house we dont have the
cats. I fear they make my flushing worse but I love them so much. I can
sleep ok now, fan on. Its very cold here, there is snow, but I keep temps
around 16 degrees in the house, stable. What I eat
is:
-Breakfast: some pears (normal ones, no skin)
-Lunch: bean sprouts, I bake them till they are soft and tasty, organic chicken breast,
-Dinner: vegetables, stir fried: fennel, bean sprouts, carrot, zuchini, some potatoes
I make my own frozen yoghurt with an ice cream machine; organic yoghurt with some cane sugar (very little).
I sometimes eat fish. I can handle organic chicken very well and sometimes organic beef. Salad with olive oil. I also make little pancakes with gluten free flower made of brown rice flour, with some egg yolks (the whites have too much histamine for me) and some almond milk. I put some agave syrup on them usually or some natural fruit jam. That's about it. Oh and some dark chocolate usually at night, only a little bit and the dark version, not milk or white. I still flush parts of the day and I spend a lot of time indoors. We went to the cinema tonight and I was flushed half of the time. Saw a nice movie, Polanski's Venus in Fur. Really liked it. Saw Inside Llewyn Davis earlier this week, some friends didn't like it as much as there wasn't a clear story-line but I loved it, have you seen it yet? I was sitting there in the cinema tonight with only a tank top and jeans, it wasn't even too warm in there, people had sweaters on but I needed as much bare skin as possible to make sure I got rid of some heat through my normal skin instead of only my face... I can manage at the moment, but still have the fan on most of the time. It helps me not to get too flushed though. Hope you are coping!! All my best wishes
-Lunch: bean sprouts, I bake them till they are soft and tasty, organic chicken breast,
-Dinner: vegetables, stir fried: fennel, bean sprouts, carrot, zuchini, some potatoes
I make my own frozen yoghurt with an ice cream machine; organic yoghurt with some cane sugar (very little).
I sometimes eat fish. I can handle organic chicken very well and sometimes organic beef. Salad with olive oil. I also make little pancakes with gluten free flower made of brown rice flour, with some egg yolks (the whites have too much histamine for me) and some almond milk. I put some agave syrup on them usually or some natural fruit jam. That's about it. Oh and some dark chocolate usually at night, only a little bit and the dark version, not milk or white. I still flush parts of the day and I spend a lot of time indoors. We went to the cinema tonight and I was flushed half of the time. Saw a nice movie, Polanski's Venus in Fur. Really liked it. Saw Inside Llewyn Davis earlier this week, some friends didn't like it as much as there wasn't a clear story-line but I loved it, have you seen it yet? I was sitting there in the cinema tonight with only a tank top and jeans, it wasn't even too warm in there, people had sweaters on but I needed as much bare skin as possible to make sure I got rid of some heat through my normal skin instead of only my face... I can manage at the moment, but still have the fan on most of the time. It helps me not to get too flushed though. Hope you are coping!! All my best wishes
Last night I saw a really nice documentary in the cinema:
18th of March 2014
Had a pretty bad period the past months, with dental issues (see dentist post). Bad flushing, burning and redness and it made me housebound entirely. Things are finally improving a bit again now, touch on wood.
27th of March 2014
I've been recovering from the dental issues slowly. I think the flushing is down a bit again and the facial redness is getting down again as well. I started taking some plaquenil again, but already feel my eyes getting gritty and burning again, sigh. I would love to keep using it, as dr Chu also works with it for his flushing patients, and it is a good med for controlling inflammation and to suppress the immune system a bit. Have been helping my friend in his new home, but his father was over for some weeks too and I felt it difficult to act constantly positive and nice and warm. I feel I'm getting so trapped in my own world sometimes. For instance, I am so used to having the house cool and lay on the couch in the evenings watching some favorite programs or working on my laptop and when he is there, he is cold in the evenings and likes the heating on. And windows closed. And to watch his own programs. I spent more time in my bedroom therefore when I felt hot, but 2 weeks feel very long then. Now that he is gone, I feel bad about it however. I received some nice emails from some readers of this blog. I'll add some parts of it, as they asked specific questions about my dealing with rosacea
Dear Scarletnat, Having read most if not all your really interesting online blog, “Scarlet Letters, dealing with vascular rosacea and the rest” has kept me engaged every night for the past week. I wanted to thank you so much for allowing others a way into your life and personal journey of living with the condition rosacea. Your blog is fantastic and life needs more people like you to help make the world a better place…
Medications
You mentioned in your blog about using over 5 different medications daily for treating your condition are they as follows and do you take any other medications that are not included?
• Beta-blockers Propranolol
• Clonidine
• Remeron (mirtazapine)
• Antihistamines (Xyzal as when needed)
• Antimalarial drugs such as hydroxychloroquine (Plaquenil)
Note do you take any of the above as and when needed? You did mention about stopping taking your medication. Do you think you will always be on medication?"I find medication so far most helpful to constraint the flushing to a decent degree. Am still looking for the perfect anti inflammatory to suppress the redness but things look a lot better now. However, as soon as I stop taking my meds things go downhill fast again, I tried at least 3 times now to stop with them only to see the flushing come back with a vengeance."
How did you find taking Remeron? Does this antidepressant help with taking the edge of the constant anxiety and dread that rosacea brings? How did you find using beta-blockers? Do you take as when needed or all the time? How did you find Clonidine? What about Antihistamines and Antimalarial medication?
Laser treatment
Dr. Crouch (Swindon). How did you find Dr Crouch? Think you mentioned he was very experienced professional expert with IPL laser treatment. Does he use the Lumenis One laser for treating rosacea a triple pass/pulse triple filter & multiple pass technique developed for use with this machine by Dr. Peter Crouch? How did you find IPL in general with Dr Crouch and are you going back for any further IPL treatments? You did mentioned below. Both Dr Chu and my German dermatologist are very weary to say the least about the treatment of reactive vascular rosacea with IPL or laser. I guess I should have listened to them.
Dermatologist
Dr Chu in Hammersmith Hospital London. I think he’s the person (dermatologist) with regards to rosacea patient management and ongoing treatment. When are you due to see him next?
Cleanse and MoisturizeWhat basic cleanser and moisturizer do you use? I try and keep my skin regime as simple as possible and the less you put on your face the less likelihood of skin irritation. One of the biggest skin irritations in cosmetics is fragrance and its hard finding fragrance free products. I am currently cleansing my face with Olay Foaming Face Wash Sensitive and have found this thus so far the best face wash I have used and brought it on Amazon. Moisturizer I am currently trying the CaraVe PM Facial Moisturizing Lotion for night and thinking of getting the CeraVe hydrating lotion as have heard good things about. Again, you have to buy on Amazon and can take a few weeks to arrive after purchase. Finding a good cleanser and moisturizer has been so hard and have given up the amount of times that I have been disappointed with trying different products. Clinique does a redness solutions daily relief cream and which I found pretty good but at £37.00 and a messily 50ml couldn’t justify the hefty cost.
Sunscreen
I also never knew how hard it would be trying to find a sunscreen that didn’t irritate my skin that wasn’t a sticky mess all over my face lol. So again after much search I am pleased to say I’ve found one that I am finally happy with!! Ultrasun SPF 30 Super Sensitive Family Formula Once A Day. It really does work and you only need to apply once a day, which is genius really, it’s also free from oils, emulsifiers and perfume reducing the risk of allergy. Its expensive but when you are only apply once a day its actually works out to be pretty reasonable and I buy the 500ml which lasts me all year and you don’t need to carry around with you as once you’ve got it on that’s it and you don’t need to worry about it or replaying… Note Amazon sells the Ultrasun for £24.95 for 150ml that’s way to expensive!!! I brought mine on Escentual and brought the 500ml for £41.65 so for less then double the price from Amazon I was able to get 500ml. Whilst the initial price seems expensive but when you consider it will last the whole year and I wear sun block everyday from winter to summer and find it really helps with the rosacea, sun is a major key factor with this condition. http://www.escentual.com/ultrasun/ultrasun013/ I haven’t as of yet found a physical sunscreen of zinc oxide and titanium dioxide that has really worked even though they are meant to be better for people with rosacea. They do give that distinctive white cast and some have even mentioned irritation. The Ultrasun is a chemical sunscreen with added titanium dioxide so its part physical but doesn’t contain any zinc, which supposedly is meant to be calming on the skin?? What sunscreen do you use?
Other tips
You mentioned about washing your bedding clothing (duvets, bed sheets, pillows) at 60’c to kill bacteria or bed mites? Does this help? You mentioned about using a pillowcase that’s anti dust or Anti Allergy but couldn’t find again in your blog? Can you think of any other relevant info that I haven’t mentioned that is helping you? How do you go about getting an intestine or bowl checkup and what things are with regards to rosacea are you looking for and needing to get checked and looked at? It would be great to hear from you and exchange any helpful info and tips and please keep up with the blog and letting the world know about rosacea. I look forward to hearing from you soon
Kind regards
Reply:
Dear X,
• Beta-blockers Propranolol; yes, 40 mg a day, sometimes 2 a day or as needed, usually 40 mg a day.
• Clonidine ; yes, 0,075 mcg (half a pill), every 8 hours, so 3 times a day
• Remeron (mirtazapine) ; yes 22,5 pill (1,5 pill that is) at night
• Antihistamines (Xyzal as when needed); yes, Xyzal, 10 mg a day, and sometimes I take inorial and zaditine
• Antimalarial drugs such as hydroxychloroquine (Plaquenil); hmm, I can't handle mepacrine and just started taking some plaquenil again, but I am very unsure still if I will use this ling term. I find plaquenil's toxicity levels a bit bothersome, my eyes get painful and dry and burning every time I start with plaquenil, but its supposed to be good for flushing and redness, and an anti-inflammatory and immunosuppressor..
Yeh, unfortunately I do think I will need to be on medication for ever.. I thought ten years down the line that by now there would be acure or I would be clear from rosacea, but alas. Every time I stopped with remeron, things got bad again after a few days, with ongoing flushing and burning. I find remeron very good at cutting down on my flushing and redness, and it also cuts down on my anxiety levels. I find it somewhat helpful as an antidepressant, but I felt a lot less depressed at 30 mg a day, whereas it is a bit less effective then as an anti-flushing aid. SO I take between 15 mg and 25 mg,, usually 22,5 and feel it helps most then for my rosacea. I can be depressed still however on this dose.
Antibiotics
don't help me at all, unfortunately. I get actually more red from it,
if anything. I haven't used Mirvaso yet but did do a test with
brimonidine eye gel solution and it made me pale for a few hours and
then gave really really bad rebound redness and flushing, that was
impossible to cool down, until it ran it's course many hours later. I
don't want to use Mirvaso therefore. I found Dr
Chrouch a very pleasant man and also very knowledgeable about rosacea
and IPL treatments. I think in my case, I am photosensitive, he
confirmed this, which might have be the reason that IPL made me a lot
worse instead of better. Dr Chrouch does not have the v-beam perfecta
laser up until this moment. That one is supposed to be pretty good for
rosacea treatments, and flushing, as well. I went to a specialist in
Australia for it, but only dared to do smaller areas of skin (lower
cheeks) and saw no noticeable difference after 2 sessions. I don't have
the money at the moment for it and still am very weary of any IPL or
laser for me, as my skin reacts so bad to lights, red light treatment,
IPL and potentially laser. I feel the risk is too big for me as I
already have very reactive and active rosacea. Yeh
I think Dr Chu is great. I saw him a lot in 2005/2006 and now visit him
once every 2 years. I plan to see him at the end of the year again. He
has a wide range of anti flushing medications he is willing to try on
rosacea sufferers.
I'll look into your CaraVe
PM FacialMoisturizing Lotion, I still don't handle moisturizers
well... I use some diluted jojoba oil when needed, but spare the very
reactive inner cheek area. I also have some creams from Avene, which I
can handle but I find them a bit clogging because of the paraffin in it.
I am still struggling with moisturizers, I have not been using them for
a long time now, I think my skin is least irritated when I just cleanse
it with bottled water in the evening (sometimes every other night, in
order to not dry it out too much) and not moisturize at all. That's
a great tip for a sunscreen, thank you. I will share it on the blog if
you don't mind. I can't handle any of the sunscreens I tried so far. and
always shield my face from the sun with hats/staying in the shade
anyway. Yeh well I am allergy prone so I try to keep
bed linen clean, change and wash it once every week at 60 degrees
minimum and with special washing powder without fragrances/perfumes and
other baddies in it. I also try to keep the house dust free, well as far
as I can be bothered that is :) I have a pillow that is
anti allergen, it prevents mites to come into contact with your face. I
should buy such a thing for my bedlinnen too but they are very expensive
so I still haven't.. I use a small fan when I feel a
flush coming up, and stay cool that way when I work or even watch tele
or anything. I am careful not to eat foods that trigger flushing, I try
to have a long walk every day when the sun is going down, and find that
physical exercise of some sort is beneficial. Don't get too overweight,
as the extra fat reserves will impact hormones in your body, which can
add to the flushing and redness.
I have
underlying colitis, a type of bowel lining inflammation. But not
everybody with rosacea will have this. If you have zero symptoms related
to your bowel, I wouldn't say you need it checked. But if you do have
symptoms, it might be handy to know what is going on. It didn't result
in my doctors sitting together and thinking out an all round plan however;
they still see it as isolated health conditions, unfortunately, as I do
feel they are connected. I am working on a blog post about
other underlying health issues that might mimic or set off rosacea, and
that people might want to look into when they have rosacea symptoms. I
haven't had heaps of time to work on it but it will come..
Thanks for taking the time to email me and let me know how you are doing?
best wishes2nd of April 2014
The whole dental saga has shaken me a bit and made me aware that things are more complex health wise than I earlier anticipated. It dawned on me that whomever forbid if I ever end up in some serious accident, I might be in trouble. I like to watch the odd episode of Discovery Channels Live at the ER docu and see then how limbs are straightened with metal screws and plates. How fragile the body is and if I can't even tolerate simple (albeit synthetic) dental fillings, what happens if I ever need plastics or metals in my body? Can only imagine how ballistic my immune system will go then. I had a brush with fate a few months ago. I had been walking in a a coastal place and had gotten lost when I wanted to make a longer walk and got in new territory. I had to walk in the middle of nowhere, in the dark (no moon that night) along the shore of a nature park back to the car. Not great. I drove back, to my friends place in the middle of nowhere. It is a windy road and it's not lit. My car had been repaired a few weeks earlier and the mechanics had not set the front lights quite right; the angle wasn't ideal. I drove perhaps 60 km/hrs but after a particular windy bend, on the middle of the road sat a huge dog, staring my right in the eyes. It sat still right in front of the car and wasn't about to move. The road had deep trenches at the sides and no hard shoulder or anything, so in a split second I had to decide whether to turn the steering wheel, and risk being catapulted in the deep ditch, or to keep moving. I screamed and ran over the dog. I felt it was dragged along under the car for a bit and then the car was free again and I was still screaming. The road was pitch dark and abandoned, and I feel awfully horrid but I didn't dare to stop the car and look for the dog. Instead I drove like a madman to my friends place, only 10 minutes further and asked him to go back and check for the dog. He had a very hard time finding any traces and then found some blood on the road but no dog. I love animals, ok maybe cats slightly more than dogs, but I felt shaken and awful for a long time. I no longer drive freely and as fast as I used to (not that night, mind you, as it was dark and I always drive like a gran in the dark). It does make you think not only of that poor dog, but also of what might have happened if I had chosen to turn the wheel. So well, this has actually nothing to do with the dental problem, but it all meant a change from normal sailing life. I now worry every time I eat something slightly sweet, I brush my teeth like a maniac with my expensive new Oral B electric brush, I drive awfully careful.
My skin has been pretty awful since the dental problems, but now that the fillings are out and the wounds are healing, things are slowly but surely normalizing again rosacea wise. No 24/7 burning and flushing, but only after the usual triggers and the normal hours of the day (evenings, just after waking). I have been in the countryside the past weeks and my friend had his dad over for 2 weeks. I felt pretty bad and had a hard time adapting myself and behaving myself within the normal range, to be honest. All I wanted was with a blanket on the couch, tele on, laptop with me to do some work and listen to music, rosacea friendly food and to be left alone. Instead, I had to pretend I was ok, the man is utterly lovely, but old and cold all the time so he wanted the heating on in the evenings. He knew of my dental issues and he knows of my skin problem, so whenever I entered the living room, about 50% of the time he would get up to put the heating down, but even then it was still too warm for me. Plus, I felt a big hassle. Anyway, it wasn't pure agony or anything, but rather bad timing.
A friend on facebook has initiated a music game which I do enjoy a lot lately. We give each other a country and then both have to find the best song we can find that comes from a native band or singer. I will add a few numbers we found, we aim for pop/indie type of music (although I do love and have a massive collection of classical music I feel like saying). Here are some playlists I made within this 'project':
Best current music
Post rock and atmospheric metal
A bit of everything
My friend wrote:
"Oh honey. I so totally understand. You write so well, and you explained so clearly what living with this is like. My long standing GP doc has said he will talk to my new specialty concierge doc, and I will send you the email I sent him about this pain. Few people understand that it's not drama to exit when X dies. It's that I literally cannot leave the condo from April through September. That is not an exaggeration; temps over 16.5 cause terrible flushing and terrible pain. It's bad enough to be housebound, even if you have nice friends and some money and a good husband. But I couldn't even get groceries if X croaked. Much less go pick up prescriptions, get the car fixed, all the little outside errands he does uncomplainingly many many days of the week. There is a difference, I think, between living and not dying. Living is what we used to do; drinking, having interesting sex, laughing, riding bikes, walking outside with our lovers on a hot summer night, feeling the warmth of summer on our skin. I will not chase death but I will not fight it, either. The progressive nature of this disease horrifies me. I have a dear girlfriend. I would like nothing more than to travel with her. I want to go with her to Morocco, to South Africa, to Cuba, to Rio, etc. I have plenty of money. But I can't go to the fucking grocery store, much less another continent. I am so, so very sorry you are suffering, and clearly you are. It's awful to have your space invaded when your space is all you've got. Especially by a dear older person who needs warmth. It's awful to feel you need, need, need, another person, a man, a lover, so much that you will put up with anything. It's entirely reasonable that we spend a lot of time thinking about and complaining about our pain. But jesus, what a crushing bore it must be to those who love us. Always, I hurt, I hurt, I hurt, nothing much more to offer. I do love you though. I hope your mood improves soon. Love, X"
We've talked about pain before, you and I. I'm no stranger to pain and pushing through, X -- I was a serious competitive athlete in my twenties and thirties. I've done Hot Bikram yoga, hard, for years. I've boxed, and I've fenced at the state championship level. I've trained hard in physical competition for years and I've lifted weights and I've raced bicycles and I've wrecked bicycles and I've had concussions and I've wrecked and totaled about five 'formula-vee' race cars and I've crashed my motorcycle repeatedly and I've damn-near drowned in a flood-swollen river. Canoeing. LOL. But none of that approaches this pain. This pain has been magnified and perpetuated until it now devours me. I'm soooo tired of well-meaning friends telling me how to fix the pain, always with junk science; start journaling, jump on a trampoline and release my aggressions, see a homeopath, find the mind-body nexus and give it a tweak, envision myself standing my ground, ignore the pain, distract the pain, lower my inflammation, eat less meat, eat more meat, raise my kundalini, smooth my chakras, gaze into crystals,…. blah blah blah. I understand there aren't many breakthroughs in long-standing chronic pain. I also understand now that you were right long ago when you suspected those laser treatments probably did me more harm than good. I remember you told me, "One must observe the temptation to DO SOMETHING, and sometimes… do nothing." So thank you for trying to stop me from damaging my face further. Meanwhile, did I mention my fucking face hurts? Love, X"
Faces of friend (with her approval obviously) and me right now:
11th of April 2014
A friend of mine who has severe facial flushing problems, has a lot of improvement since starting remeron. You can read our communication about it here, below my blogpost about my current medication17th of April 2014
I have had a really good week. Last week, weather wasn't too warm, around 15 degrees and cool at night so I could go out during the day a lot and stay cool with a window open at night. I have been out and about seeing my friends and family, which was a real treat. Yesterday temps were up to 18 degrees again and it was sunny. I went into the city center to enjoy the busy hassle there, literally everyone seemed out there in the sun, on terraces and in the park etc. I was more flushed last night and today it's back to red and flushed. I suspect my pollen allergies kicked in or something; last week the air was colder and quite humid. Ordered an cold air humidifier just yet:
Crane Drop Shape Cool Mist HumidifierIncreases air moisture for easier breathing and relieve of cough, cold, and flu symptoms, including nasal congestion, dry cough, sinus irritation, nose bleeds as well as dry skin. Ultrasonic cool mist operation does not require a filter to run (demineralization filter available - model # HS-3161). 1 gallon water tank runs whisper quiet up to 24 hours. To fill, simply remove the drop shape water tank from the unit, unscrew the tank cap, and fill the tank under the water faucet. Puts out up to 2.3 gallons of moisture per day and effectively humidifies rooms up to 250 square feet. Auto shutoff safety sensor and 360 degree output nozzle 360 degree mist nozzle and variable control settings. Auto shutoff safety sensor. So, I hope it will keep the air cool when it humidifies. Since I don't use or tolerate creams or topical moisturizers well, I find it does help to not let the air get too dry. Oh well and drink a lot of water of course. Which is always on my list but honestly, I often feel too lazy to get up and get new water, or just forget it :/
UPDATE: it works great! Ony side note; the room will soon look like Kate Bush just performed Wuthering Heights in it :) Very misty indeed, but it's so soothing for my skin espcially in dry warm/cold periods.
My sister and I took our little piece of mischief, T., to a farm where he could watch goats and sheep, little baby sheep, rabbits, birds, horses and a massive pig (called Eva, 250 kilo's and grunting with content in her shack). It was open for free and runs on volunteers. We had a blast. Its so lovely to see most kids get super excited just at the sight of animals :) He was beaming. We first went into the pen of the goats and they came straight to us and very incredibly docile and nice. Right before we left I noticed that we could buy some food for them in a cup, to sponsor the farm, so we bought 2 and went back into the pen. Haha, big mistake, we were all kicked aside by a wild rush of goats flying to us from all sides :) I had to drop the cup with food and they plunged onto it like hungry hyenas :)
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22nd of April 2014
I search, I hunt, I seek, I trace,
Forage the land, that bright lit maze,
With ponderous pace, fixated stare
I unremittingly ask: where?
I stroll through cities, search the land,
Do I approach or did I strand?
Estranged of all, with thoughts unstirred
While far away resounds this word
In thirst and weariness I sink,
With troubled heart I stare and blink,
Then sounds the voice I once forgot
“Thine home is there, where thee ist not
I also love the poetry from Romantics like Lord Byron, Shelley, Keats and (older) Shakespeare. Here are some other poems I love. Goethe wrote a beautiful (German) poem about a father with his dying child, riding through the woods. This is an English translation:Who rides there so late through the night dark and drear?
The father it is, with his infant so dear;
He holdeth the boy tightly clasp'd in his arm,
He holdeth him safely, he keepeth him warm.
"My son, wherefore seek'st thou thy face thus to hide?"
"Look, father, the Erl-King is close by our side!
Dost see not the Erl-King, with crown and with train?"
"My son, 'tis the mist rising over the plain."
"Oh, come, thou dear infant! oh come thou with me!
For many a game I will play there with thee;
On my strand, lovely flowers their blossoms unfold,
My mother shall grace thee with garments of gold."
"My father, my father, and dost thou not hear
The words that the Erl-King now breathes in mine ear?"
"Be calm, dearest child, 'tis thy fancy deceives;
'Tis the sad wind that sighs through the withering leaves."
"Wilt go, then, dear infant, wilt go with me there?
My daughters shall tend thee with sisterly care;
My daughters by night their glad festival keep,
They'll dance thee, and rock thee, and sing thee to sleep."
"My father, my father, and dost thou not see,
How the Erl-King his daughters has brought here for me?"
"My darling, my darling, I see it aright,
'Tis the aged grey willows deceiving thy sight."
"I love thee, I'm charm'd by thy beauty, dear boy!
And if thou'rt unwilling, then force I'll employ."
"My father, my father, he seizes me fast,
For sorely the Erl-King has hurt me at last."
The father now gallops, with terror half wild,
He grasps in his arms the poor shuddering child;
He reaches his courtyard with toil and with dread, –
The child in his arms finds he motionless, dead
The composer Franz Schubert made music with the poem, at a later date, here is a video's of it:
This one is from Edmund Spenser (1552-1599):
One day I wrote her name upon the strand
But came the waves and washed it away
Again I wrote it with a second hand
But came the tide, and made my pains his prey
Vain man, said she, that doest in vain assay
A mortal thing so to immortalize
For I myself shall like to this decay
And eek my name be wiped out likewise
Not so (quoth I), let baser things devise
To die in dust, but you shall live by fame
My verse your virtues rare shall eternize
And in the heavens write your glorious name
Where whenas Death shall all the world subdue
Our love shall live, and later life renew.
This simple yet romantic poet is from Yeats (1865-1939):Had I the heaven's embroidered clothes
Enwrought with gold and silver light
The blue and the dim and the dark clothes
Of night and light and the halflight
I would spread the clothes under your feet
But I, being poor, have only my dreams
I have spread my dreams under your feet
Tread softly, because you tread on my dreams
This is sonnet is from Shakespeare (1564-1616):
SONNET 27
Weary with toil, I haste me to my bed,
The dear repose for limbs with travel tired;
But then begins a journey in my head,
To work my mind, when body's work's expired:
For then my thoughts, from far where I abide,
Intend a zealous pilgrimage to thee,
And keep my drooping eyelids open wide,
Looking on darkness which the blind do see
Save that my soul's imaginary sight
Presents thy shadow to my sightless view,
Which, like a jewel hung in ghastly night,
Makes black night beauteous and her old face new.
Lo! thus, by day my limbs, by night my mind,
For thee and for myself no quiet find.
HOPE
HOPE Was but a timid friend;
She sat without the grated den,
Watching how my fate would tend,
Even as selfish-hearted men.
She was cruel in her fear;
Through the bars one dreary day,
I looked out to see her there,
And she turned her face away!
Like a false guard, false watch keeping,
Still, in strife, she whispered peace;
She would sing while I was weeping;
If I listened, she would cease.
False she was, and unrelenting;
When my last joys strewed the ground,
Even Sorrow saw, repenting,
Those sad relics scattered round;
Hope, whose whisper would have given
Balm to all my frenzied pain,
Stretched her wings, and soared to heaven,
Went, and ne'er returned again!
These are from Thomas A. Spencer (1845-1911):I ask my heart, "Do I love thee?"
But how can I e'er forget
The feelings of joy and rapture
That thrilled me when first we met?
The memory of each glad meeting
Is treasured within my heart,
Which has well-nigh ceased its beating,
Since, in sorrow, we had to part.
Each night, as I seek my pillow,
I murmur a prayer for thee,
I breathe thy name, as the sunbeams
Flash red on the eastern sea.
Thy spirit is still the beacon
That guides me 'mid care and strife,
And there 'twill remain for ever,
My darling, my love, my life.
************************************************
As we travel Life's weary journey,
And plod through the gathering years,
With our burdens of care and sorrow,
O'er a pathway bedewed with tears.
If, perchance, for a fleeting moment
Our hearts should with rapture swell,
We have added but one more sorrow,
When we bid the glad time "Farewell".
I have watched the bright dawn awaking,
And noted each changing light,
As the sun, in its morning splendour,
Dispelled the dark gloom of night.
I have welcomed its bright rays stealing
Over hill-top, and wood, and dell;
Yet, my joy was alloyed with sorrow,
As I bade the bright stars "Farewell".I have seen the red sun descending
To its home in the glowing west,
Whilst the tremulous voice of nature
Was solemnly lulled to rest.
I have welcomed the stars, appearing,
And greeted them one by one,
Yet, my greeting was toned with sadness,
As I said "Farewell" to the sun.
When we welcome the summer sunshine,
Farewell to the flowers of Spring.
Adieu to the fruits of Autumn,
When we welcome the frosty king.
Good-bye to the joys of childhood,
When vigorous youth appears;
Then - a season of strife and turmoil,
And - farewell to the vanished years.I am sighing a farewell message,
As I sit in the gathering gloom.
Farewell to all earthly sorrows,
Then - rest, in the silent tomb.
Farewell to the trees, and flowers,
To mountain, and stream, and dell,
Farewell to the glorious sunlight,
To the moon and stars, "Farewell"
I love texts and am glad to work with it, and with art, even though this work hardly pays anything. I discussed a poem by Shakespeare with a friend over facebook lately and tried to analyze it, which was a lot of fun. I'll add it here, in case there is anyone still interested in 14th century sonnets ;) I followed a special one time master class of Literature criticism at university back in the days, from a famous teacher. I did love it and it still affects my reading to this day I have to say (very tiring too, I always look for motifs and metaphors etc lol). I am reading a novel by an American writer, John Williams. It's called Stoner and recently 'rediscovered' in Holland, and translated again, and currently it's quite the hipster book to read, or so the publishing company wants us to believe. So surely I bought it, and it's been pretty good so far, although I have only recently started in it. On page 19 he is at uni and is asked to analyze a sonnet (73) by Shakespeare. It goes like this:
That time of year thou mayst in me behold,
When yellow leaves, or none, or few, do hang
Upon those boughs which shake against the cold,
Bare ruined choirs, where late the sweet birds sang.
In me thou seest the twilight of such day,
As after sunset fadeth in the west,
Which by and by black night doth take away,
Death's second self, that seals up all in rest.
In me thou seest the glowing of such fire,
That on the ashes of his youth doth lie,
As the death-bed whereon it must expire,
Consumed with that which it was nourished by.
This thou perceiv'st, which makes thy love more strong,
To love that well, which thou must leave ere long.
 |
| William Turner |
That time of year thou mayst in me behold,
When yellow leaves, or none, or few, do hang
Upon those boughs which shake against the cold,
Bare ruined choirs, where late the sweet birds sang.
I like in this sentence that Shakespeare doesn't follow the normal ordering of numbers. Normaly there would have been first some, then few, then no leaves on the branches. But Skahespeare mentions some, then non, then few.
In me thou seest the twilight of such day,
As after sunset fadeth in the west,
Which by and by black night doth take away,
Death's second self, that seals up all in rest.
The poet seems to implicate that death is something that takes place in winter. Or in that time of yearin which it's dark, cold and sombre. The time after the yellow leaves have gone, and the birds have stopped singing. Death approaches in the night, or at least in the twilight here. It seems Shakespeare has used these as a metaphore for the last hours of life. And the transmission from light into the dark of night can be seen as a metaphor for the cycle from youth to old age, and then inevitably death.
In me thou seest the glowing of such fire,
That on the ashes of his youth doth lie,
As the death-bed whereon it must expire,
Consumed with that which it was nourished by.
This thou perceiv'st, which makes thy love more strong,
To love that well, which thou must leave ere long.
In this phrase, fire makes sure that youth is irreversibly disappearing. The fire extinguishes, as soon as the wood is burned up. The wood has fed the fire. Just life life expires once youth and its youthful forces are gone, and have fed life and life's energy. What is left are the ashs of that. The slowly extinguishing fire is used as a metaphor for life (and its energy), which slowly expires and goes out with time and the years. First the fire feeds heavily, but then it goes out, just like a human in the course of his life. The ashes of his youth are still visible in the remains of the fire and they still light up. The poet sees it and realized that the thing that gave his youth shine and color, has been eaten away and used as fuel for the fire of life, and now there is little energy remaining to keep the fire going. (Just like most of us thrive in our teens/youth and then rest on the memories of those days, slowly but surely calming and slowing down). The memories of youth lit up one last time here and the poet advices us to love even more forcefully in this phase, because the end is near and we will soon have to leave everything behind. Despite everything being in decay at this moment (the seasons, the cycle of the day, the process of the burning of the fire), his love lits up at this last moment. I really like about this poem how it condenses the concepts of time. First we are told about a year (from spring to winter, approaching winter at this point of time in the poem). Then the time condenses to a day (from morning to night) and then it zooms in to an even shorter time frame, i which the fire flares up and extinguishes within a mere few hours (from tree to tranch, to wood chips to ashes). Shakespeare seems to want to make the reader realize how fast time can go and how fast old age will appear. Time goes faster and faster as you age, we feel while reading this poem. The 3 time cycle that are used here all are essential for life itself. Shakespeare connects them to the personal cycle of each human life, we who are basically just a grain of sand in the big picture. But we all are subjected to these cycles of time, flourishing, decaying and dying. But at the end of the poem there is a contrast: everything decays (from big -seasons- to small -the fire we lit at night). But in this last phase, the love grows and flourishes. Maybe because we see death in the face now. The person he addresses in this poem possibly his lover, also seems to love him more now, or at least he asks him to, warning him that its object of affection will soon be gone. Most mysterious are the last 2 sentences:This thou perceiv'st, which makes thy love more strong, To love that well, which thou must leave ere long.
Does the poet refer here to life itself, or to that of the reader? It is not inconclusive. Do we love the poet more now that we knows he is dying? Or does he refer to the loss of youth from the reader? Despite some of the metaphors being slightly cliched (comparing old age and death with the passing of seasons and the days has been done before many times), there is a lot of originality in the way Shakespeare did this as well. He starts with winter, which only encompasses one fourth of all the seasons. Then we move to night, which covers half of the day cycle. But in the third part (from tree to trunk to chips to ashes) death starts from the first phase, as soon as the tree is cut and it continues
in all the other 3 stages. So, we descend into hopelessness. The seasons will repeat themselves, the sun will come back to the sky the next day but as soon as the tree is cut and brought to ashes, that tree will never resurrect. Just like us. Or perhaps the poem can be read as a warning from one lover to another, that his death will soon approach and he will no longer be able to be loved by him. Maybe he needs more love now that he is frail and nearing death. But he all the same doesn't seem to dare to ask for this, because he feels weak and insecure perhaps. So indirectly he asks ambiguously for it, and his lover can also interpretate his word as an admonition to enjoy his youth as long as it lasts. Often you only start to appreciate life when it's too late, and death is coming near. Or in our case, once we no longer can enjoy our old lives, pre- rosacea :(
30th of April 2014
Have had a few busy weeks in terms of work, seeing people and trying to dodge social invitations. One dinner with friends in their late 40's turned out really nice. She is American, from Colorado and he is French. She knows of my rosacea and promised she would cook something appropriate for me. The Colorado friend made delicious Mexican food. What a treat. I had burrito's (as plain as she could find them) with chicken breast, guacamole (I love avocado's but usually am weary of them due to high histamine levels), red and yellow peppers, lettuce, some mild salsa and cheese. I wolfed down 3 of them :) Then she had made carrot cake, so my plan to stick to non gluten (although corn is a pro-inflammatory as well) was out of the window too. It was delicious though. The don't have the heating on when I come, darlings. I brought my cold packs but didn't want to use them. They poured me iced water which was nice. I have this weird things sometimes, that when a flush isn't bad enough, it might actually burn itself out within an hour, or 2 max. That's what happened now as well. I felt the burning subsiding around 10 and when I looked in the mirror at 11 my skin looked fairly pale. Great night. Of course, the next day it was angry :) But I could at least cool and fan it at home and stick to rabbit food for a few days.
30th of April 2014
I have been up and down, my emotions are quite all over the place I
find; feeling ok and calm and accepting for some weeks, meeting friends, finding that time flies, going out for
walks which really do me a world of good (like 10 km every night),
but then another week I'm down in the dumps with life. But glad to do many nice things again. Sparrow-legs from the Rosace Forum is a facebook friend of my for sometime and we tend to bitch a bit about rosacea now and then. She has the same diet issues as me, which is nice to share; we can keep the low carb/sugar, no processed foods etc up for about a week and then get a massive craving day and just eat like pigs, usually on the Saturday :) I binged on chocolate and she had ice cream she said, and too much of it. So, back to healthy food again today. We both feel we are less flushed and a bit less red while we stick to good food, although flares occur anyway sometimes, so that is a bit demotivating. I find that
not all my friends are as understanding of my health issues and I in all
fairness don't expect them to. You know it as well, it takes some
special emphatic people to truly understand and be of some comfort. Most people have enough on their own plate and don't know what rosacea feels like, just what it looks like (and even that not, as we tend to hide our faces when we are looking bad). So I
just look for the good moments in the day, try to keep up with all my friends and to keep going out with them to do fun things, stay close to their lovely kids, and am happy with internet when face is flaring too much :) I try to avoid meeting up with old acquaintances, other than a
circle of close friends and family, and just keep in touch through
bloody facebook/chat/mail etc with the acquaintances. All smiles and laughter on there but we all know
better of course.I share a section from a beautiful post from a rosacea friend, which I found touching:
Hi Nat, I Spent free time last night on your blog in places I Hadn't read yet. I always
enjoy it as I told You before: your approach
is very honest and "raw." Rosacea Raw...
Perhaps a new title?! Anyway, just some thoughts for you.
With a few Personal notes. First, moodiness or depression.
It's been well documented that this can run in
families. You Mention this so I'm not going
anywhere new with this statement. You mention
your parents and somewhat of the history there.
Most if not all people prone to Depression
have heightened sensitivities.
Whether this Is because they were born with this
or it is the result of Their childhood/environment/
event in their life or all....... In The end you must
ask yourself this key question: " am I going to let
this work for me or against me?"
I know from experience when I choose to let " it" work
For me, I'm content and fulfilled in all areas of my life.
Even with bad memories ( which I now feel blessed
To have) even with skin issues, health issues, husband/
Wife issues..... All of it. Like accepting rosacea, it is
A complete acceptance of the celebration of everything you
Are. So you put all of you -- all of your sensitivity-- call
It perception-- because as you know by now in your life,
Not all people have deep perception ( they are the
Sweeter, " dumbed down" version of humanity). Haha. ----
So, are you going to let your perception work for you? Or
Against you? xxx
"Thank you. That is so nicely put. Yeh I know, I
muddle on and try to see the positives. It works for a good period of time and then my mood tends to drop again for short spells; one moment I see how blessed I am in my life and what a great life I have in many ways and I feel upbeat and social and productive in work, And on other days I just bitch and moan about the things I lost, the life I miss, the restrictions and isolation, the rotten medication I don't want to take, it being too sunny or too rainy outside, eating rabbit food etc etc. Thank you for your blog comments, I
hope I don't come across too 'raw' and pessimistic? I have been
pondering about those words the past days.. I tend to write there when I
feel shit, so it might not fully reflect my state of mind and might make me seem too
grumpy and down? Please do tell me how it comes across to you."This is a small section of another email from a rosacea friend:
"Hi, Well, I know all about the ups and downs you are going through. I had a bad week last week. I think i am just at a stage where i have given up hope of any improvement in my skin. It just looks as though the damage from the IPL is here to stay and it is difficult to handle. Every single spot on my face where i had IPL is where my skin is damaged. When i say damaged, I mean it used to be white/pale, but now it is pink and I am as sensitive as ever. I've only been on finacea for 3 weeks so I have to be patient, but I just can't see any miracles occurring. I'm sure you are the same as me in that you keep asking yourself why you got that IPL. I find it even more difficult to handle because I didn't specifically go to my practitioner for IPL and had no intention of getting it until i got coerced into getting it. It haunts me all of the time and as i have said before I feel angry and frustrated that I can't do anything about it. I know that's how you felt too, so I suppose we just have to learn to live with it. [..] I am finding it tough at the moment just living in hope that things might get better. Also, I am starting to miss a lot of things in life. My condition was fine until i had this IPL and now i/we have to live with it. [..]"
I share part of my response, as I guess and think more rosacea patients struggle with these issues and thoughts. This is just the status quo of where I am mentally right now in dealing with this:
There is no way to go back in time and there is no point in going over the same questions again and again. By now, I have no ideals about fixing it anymore. It has become all about managing the symptoms and preventing it from progressing too much. It really turned my life upside down but it's been 15 years for me now (and a shorter time for you, so you are still in the process of all this) and I am done with trying all new sorts of things. I have a few good male friends, and only recently I told them about the rosacea and this blog and they come with very well meant advice, want to take me to a doctor in Israel, the best hospital in Germany, another natural specialist, a retreat in the Swiss mountains. Very lovely of them but no, I have literally seen all the natural healers you can think of. The best Chinese doctors in the country, years of acupuncture and herbal therapies, homeopathy, hypnosis, you name it. Nothing worked, or it made it worse. I have spent so many years trying new things and I find it so incredibly energy consuming. I'm glad I am past those times. I stick to the few things that have had a positive effect on me and my rosacea, which are certain medications, no creams on my skin, and perhaps the odd application of jojoba oil. Avoiding the worst triggers. Staying cool, no stress. I think everyone with rosacea has to go through it though; to find out what your specific rosacea case acts like, what it responds to and what helps and what not. But with time I just got to this acceptance stage, and maybe it comes more from exhaustion and lack of any more ideals and real true life changing hopes, but this is what it is now, I won't do laser or IPL again, I can't undo the treatments I had, just warn others of the possible side effects. And eat healthy, live healthy, make the most of things, have nice friendships, read good stuff, go on travels when I can and let go of some hopes I had perhaps.
Aww this has become a very melodramatic post, I'm
sorry. I hope you can keep trying new things, see what your skin
improves from and what not. And definitely go out and meet people now
and then. I invite friend over at my home often, or we go out into town.
Even though I might go home again in 4 hours or so when I get too
flushed and hot, it still makes me feel so good and 'normal', doing such
things. Staying in home and in your comfort zone feels like a safe
cocoon at times perhaps, but its a bit suffocating and depressing when
you are too long in there. Its just hard to break the habits? Are there places you like to go? There are sites where you
can find penpals who don't have health problems, maybe you like to
exchange thoughts with someone who you don't know personally and for
whom you don't have to leave the house and show your face to be in
contact? About red light therapy; I will try it again, I have a hand held
device. I felt it made me more flushed back in 2005, but I was flushed
24/7 back then. So now would be a better time to test it again. Will
update you on it once I know more. It seems with red light that it works
for some and doesn;t for others. Perhaps that has something to do with
the sensitivity of your skin, the reactivity of your blood vessels and
how photosensitive you are, I don't know.. Yeh I get some emails from rosacea patients now and then but not truck loads or anything, it's always nice to hear from people and its always nice to hear from you, so can always email me ok? Anytime. Ciao amigo"It's also mothers day today, I sent my mom a jibjab video and this picture:
It's also my lovely sisters 30th birthday. We watched the Eurovision song festival last night and bitched and joked about it on facebook with some other friends. I do like that aspect of social media; I can sit in bath robe and blanket on the couch, watching the tv with friends and at the same time we can discuss it online with some friends, as if we would meet in a pub. Here are some all time favorites of me and some friends, for those who don't know the European Song festival, its huge here, mostly under gay people, who make a big party of it each year. My uncle is a very extravagant gay artist and has worked for a lot of big fashion designers with his art installations, including Yamamoto, Donna Karan and Comme des Garcons and he always dresses wonderful and artsy. He loves the european song festival too. This is the winner, Austria, and The Netherlands became number TWO with a country like song :)
My favorite is from 1965, from Luxembourg:
This is the favorite winner from my friend Marc, from The Netherlands 1975:
This is my fathers favorite winner, Italy 1964:
My friend Leah's favorite is Spanish:
MY partner loves the romantic soft stuff and goes for Israel with Halleluja in 1979 (which was an overall great year, lol). And I also liked Dana International (1998) and the last years winners, Sweden (2012) and Denmark (2013):
More Game of Thrones last night. Du du dududu du du duduuuuuuhh
I also uploaded a lot of small videos from my trips to Australia below the Australia Adventure blog post. You can also see them through this link, on my youtube.
And I also updated the post about Victorian beauties, with a lot more beautiful faces, including these (Gladys Cooper, Maude Fealy, Evelyn Nesbit and then some mostly unknown Victorian beauties):
 |
| My own grandmother |
13th of May 2014
I have the consent of my beautiful friend X to share some of her rosacea struggles and horrendous flushing and burning issues here. Including a video of her, scroll down for it please, it's below this text section. She now has v-beam on small parts of her face. She also had some really beautiful things to say about changing appearances for us rosaceans and about women with self worth issues:Friend: "[..] And what's wrong with her that she is so insecure how she looks, [..] What does that say about her self worth? What does that say about how she will let herself be treated. Where are her parents in all this? Why did they forget to teach her that the contents of her brain are more important than her looks? Where is her feminism? Why does she have to look a certain way? Why isn't she good enough the way she is? When I was a little girl, I asked my daddy if I was beautiful. He turned to me and said, "you have all the beauty a woman really needs, and more than that isn't really very interesting." BOOM! He set me off with a good attitude for LIFE! BOOM! At the times that I looked fat or red or bad or scary, I always thought it was a good test. Did somebody just like me for my looks? Fuck them! I couldn't help them! I COULD help what I thought, and how I acted! Your "friend" is too young and too stupid (sorry, true) to see the real problems here. Seems to me you need to find some better friends, honey pie!" No lipstick, that's just me. I never bother with makeup any more, it seems so pointless!! Why more V Beam? Well, I still have this huge, visible vascular lesion and V Beam's the only way to actually make it retreat... Everything else is just a holding pattern. I hadn't had one since last Sept and needed the break but now it's time to resume making some forward progress. This shit is progressive and doc feels that we need to stay on top of it. Photos show it's grown and worsened under the eye from repeated flushing, so sadly we have to beat it back from time to time. I'm going to go in four times a year now instead of six, and only do small areas of Purpuric. No more of these full face purple treatments, I can't stand it. We're going to see if we can make some progress ,or at least keep it from worsening, with these mostly gentle, occasional ones. My face hurts! How are you, how are your spirits, sweet friend?"
25th of May 2014
She wrote:
"You asked yesterday how I do, as far as my face… the answer is, not well. So basically we never go anywhere or do anything! It's a boring life but we have nice friends, enough money, a high speed internet connection and a good marriage, so all in all, I'm happy most of the time. My doc put me on Opana ER as Meg suggested, and it's improved me remarkably. I still flush terribly to heat over 22 degrees, but under that, if I follow my diet and don't eat tons of sugar, I'm fine. That's a big change! Now, with the drug, when I get a flush or a burn, it lasts about 20 minutes instead of 8 hours. It hurts much less and I'm much less anxious about it as well. The drug has two side effects that are wonderful for me, it makes you mildly anorexic and a bit euphoric. Two things I really need! It's a time release opiate called OxyContin (Contin for Continuous). I take it every 8 hours like my clonidine. It's the most improvement to my face that X and I have seen since we started the clonidine/remeron protocol way back in the fall of 2008. I wish you could obtain this drug over there. But it's even more a controlled substance than the hydrocodone. So if they won't give you hydrocodone, they will never give you oxycodone. Harder to get, and also more rules concerning it; I have to go back in every three months for a refill instead of every 6 months. But beloved doc sees me at 8 in the morning so the visit is real quick, in and out, so I don't burn too much in his hot little office. I'll probably be on this drug for the rest of my life, and I'm fine with that. When I first asked my beloved GP for it a few months ago, I told him I thought it was approaching time for palliative care for me, because I wanted to die from the pain when I couldn't stand the pain any more. He was horrified of course, they're trained to save life not to end it, so he was delighted to prescribe the pain meds for me. And frankly I never expected they would work this well, that they would have a beneficial effect on my flushing. I thought they would just make the pain easier to manage. What a happy surprise."
I replied: "That is spectacular good news in my book :) I will discuss this med with dr Chu when I see him at the end of the year, he is the only doc I can think of who might be willing to prescribe it. My GP won't for sure, knowing how she responded before to some other questions. So it not only cuts down on your pain and burning but also the flushing? Wow! AND WEIGHT LOSS, I want this stuff too :) I didn't notice too much difference in the flushing on hydrocodone, do you think they are very different, meds or did the hydro do the same thing for your flushing as this new med?"
She replied: "I had no improvement re: flushing with hydrocone and great improvement in flushing with oxycodone." As a little side note, some people using oxycodone did report flushing of the face and neck from it, like with other opioids. However, most medication seems to be able to give this side effect to those sensitive to it. On The Rosacea Forum the drugs is also discussed:
lakan wrote on November 21st 2008: "Codeine can cause flushing. It releases histamine so flushing, itching and so on are common side effects. Some pain-killers promote angiogenesis too according to studies. As for the histamine release you could of course try to counteract that effect with anti-histamines or maybe switch to some other pain-killer if that's an option, some cause less histamine release than others. As far as i have understood Morphine is known to promote angiogenesis and usually also releases a lot of histamine. Oxycodone for example seems to be a better choice in regards to that. Maybe Tramadol is worth checking out too."
RedFaced wrote on November 22nd 2008: "Hey thanks for the info - I have taken Oxycodone and it did not do good things for my mental state (hostility, agitation etc.). I am interested in this Tramadol though...so you have read or understand that it does not cause the increased flushing that others usually do?"
Lakan replied: "Yes, Tramadol is a bit different compared to the more traditionally
opioids and it shouldn't cause that much histamine release as the
others, if any. Also, research about cancer and pain management says
that Tramadol is not known to promote angiogenesis at all but i'm not an
expert or anything, i've just read a bit about this and tried some
opioids myself. Higher doses of Tramadol does make me itchy and flushy but doses under
200mg is not a problem for me. Pretty much the same with Oxycodone,
anything under 30mg is fine but if i take more than that i have to take
some anti-histamines to not get that flushy and tingling feeling. I
can't compare it to Codeine though since i haven't tried it and the
reason for not trying out Codeine is just the stuff i've read. Tramadol
and Oxycodone seems more rosacea friendly to me."RedFaced replied: "Great - thanks for the info.The oxycodone made me feel a bit "high" when I took it, but not that I minded that as an alternative to pain.
How would you compare the Tramdol to Oxycodone in terms of pain relief and its overall effects?"
"Redbreanna posted however that she got more flushed from oxycodone, on January 13th 2008: "I had surgery last Monday, and ever since, my rosacea has been kicked up a notch. Almost constant burning, flushing, redness, and stinging, with very little relief from cold ice packs. I think it might be from the pain meds they gave me, and I was wondering if anyone else had this experience. I was taking percocet, and one of the side effects is flushing. I kept taking it because I needed pain relief, and I had already tried several other drugs with no effect on the pain. But now the percocet isn't working on my pain either (I have a fast/high tolerance to pain meds), so I decided to stop taking it. I haven't had one in about 24 hours, and I'm hoping my face will calm down now. So far it hasn't, but I'm not going to take any more percocet, regardless. Thanks, Breanna"
Artist replied: "Percocet is just a combination of oxycodone and tylenol. Oxycodone is an opioid medication, and opioids really can make you flush. I hate taking them at all because I flush badly with them. There are some good tylenol-type drugs (NSAIDS) you can try. You may want to ask your doctor for some "non-opioid" alternatives. Rest assured, once you stop the opioid, your rosacea will calm down. Cheers! Artist"Redbreanna replied: "Thanks, Artist. Unfortunately, non-opioids like NSAIDs don't help my pain. I have chronic pain, so I've taken ibuprofen, tylenol, and the like nearly every day for years... because of that, my tolerance is very high, and even when I take high doses it doesn't help. That's why I was happy when my doctor prescribed the percocet for me. It helped for the first few doses, but after that it stopped working. Of course, i kept taking it anyways because I hoped it would still help...but all that did was increase the side effects. It's been 1 1/2 days now since I took any, and I still have some of the effects, like nausea and flushing. I don't know how long it stays in the body, but I hope that the effects will go away soon. In the future I'm not sure what to do when I need pain relief. I guess I will have to endure the flushing and other side effects for the sake of pain relief? Anyways, thanks again for the advice. We'll see how the next couple days go. Breanna"
Artist replied: "What a terrible choice to have to make. I'm so sorry. There are adjunct meds like valium you can take to possibly lower the need for the opioid. Also, sometimes neurogenic pain meds like neurontin and lyrica help chronic pain. May be worth looking in to...All the best, Artist"
28th of May 2014
I dreamed about my sister last night. It was both nice and sad. I dreamed that she she died again, but that there was this window of time where she was still up and living, but already slowly dissolving. Internally, you couldn't see it on the outside. I had a week or 2 where she still lived in her house (another house than her real house by the way), and she sat there on the couch with a blanket. She would weaken and decompose slightly (I know, yuck), until she really had to go. It was sad and beautiful, I drove to her place every day and we would talk and cuddle and say goodbyes. Some other people dropped by now and then too, in some sort of wake, but once I arrived they would all go, which felt good. When we went out for a walk or in town I would tell others that she was my sister and that she would die soon. But we were in good, but melancholic spirits. It's weird, I used to hear about people losing their child or a sibling and it always felt so awful and horrible and life changing. Not something that would ever happen to you. And then when it does happen, it doesn't entirely sink in. It's ten years this year since she passed away and it still seems to be about someone else most times, not our sister. The concept of knowing someone so well and being so close to someone, and that person then just being entirely gone in a split second is still bewildering at times. I mean, you understand it consciously and rationally for everybody else whom this happens to. But with someone so close by, it seems to be about someone else, not so close by. Like the siter from my neighbors dying. In this dream she had her own personality and manners and ways of talking and moving around and it brought back a lot of little memories and details that I had not remembered for a long time. Feeling a bit sad now, but also grateful for sure a detailed dream. Maybe it is how I would like it to be, because in our case we couldn't say goodbye in real life.1st of June 2014
Skin wasn't
great this week and my relatively new laptop no longer wanted to be charged, or
couldn't charge anymore, lets put it that way. Brought it back to the
shop and assumes it was because of some defect in the charger, but
now they suspect it is the connection device within the laptop so
they need to keep it there for repair/inspection and I was without
a computer :( Have a very old super slow one here but I managed for
them to borrow me a proper one from their own shop now, so can
finally work again. Feels so sad that half your world collides when
you no longer have a computer; that sense of sheer stress you feel
when such an electrical device stops working. What a world we live
in. I'll add some of my ugly red mug too here :/ I spent a week with friends in the south recently and will add some pictures of the surroundings. I had flown there and always get so much more red and flushed out of a plane. Not entirely sure why. I always assumed from the low humidity on board, but perhaps also from
the radiation high up there? Spoke once to a pilot and asked him
about it and he said that the plane material does actually block that
radiation, but the windows don't. I'm not sure if that is true actually, regarding normal plane material blocking free radiation, or whatever it's called exactly. Either way, the radiation rays would cover most of the plane's inside anyway through the
window holes I reckon. I just fear that radiation might stir
up some atoms and molecules in our skin like a microwave does
perhaps, heats them up somehow at cellular level and stirs the
rosacea up? I might be going coockoo here as I also close off the
wifi at night :/ Just afraid the radiation somehow affects my health.
No mobile phones either, but I hate them anyway. A few older friends were also bitching about that with me recently on facebook, and wrote how
annoyed they get with people nowadays meeting with you and putting their phone
straight away in front of them on the table. Or taking all sorts of
calls no matter what discussion you are in. Or even worse, texting
while you talk with them. Because I agree with them, I now got sent pictures likes these on a regular basis :)
Holland is indeed
a relative happy country but in reality people do complaint a lot
there haha. The living tempo lies very high, 30 somethings want it
all at the same time so tend to juggle work with kids with keeping up
a social life and paying for too big a house etc. Probably the same
as in the US? We and the Scandinavian countries are very well
organized though. Everybody has health insurance and its still
affordable for instance. The state is quite dominant in making sure
the country runs smoothly, places look clean and well kept. It breaks
my heart when I see stuff about the people in the US who fall off the
ship and get ill and need to sell their houses or whatever to pay for
health care. Just awful when you have always had social welfare and
health care yourself. With
regards to the second world war, that really is part of the history
here as the Netherlands were invaded by the Germans. It made for some
true heroic stories and a lot of cowardly ones. You had those who
would collaborate with the enemy, the opportunistic ones, they were
called NSB people (considered traders but there were quite a few of
them). A small group of people went into the resistance. I only
recently heard about my grandparents extended resistance work during
the Second World war. (My mothers parents - Grandmothers family were themselves Polish Jews who came to Holland some time ago, my grandfather is also half Polish). They lived across a Catholic church and dug a
long tunnel from their cellar to the church and over the years hid
many Jewish people in their cellar and helped them then hide in the
church attics. My grandma drove around important papers and stuff and
they had 6 children themselves. At some point my granddad was
searched for by the Germans and he could find a hiding place,
with a farmer in the region, and when the Germans came there to look
for him after receiving some tip, they couldn't find him because he
was so well hidden. They gathered the farmer and his wife and kids in
the kitchen and ordered him to speak up, which he didn't, and they
then nailed the tongue of the farmer to the wooden table and let the
kids watch him bleed to death. So ruthless. When I saw Tarantino's opening scenes of Inglorious Bastards it
remembered me of this thing with my granddad. He was so ridden with guilt later in life
over all this that he never talked about it. In fact, we always saw
him sitting in his chair, drinking and smoking and actually thinking
there was nothing heroic about him whatsoever.. Sad we didn't know
then about all this. Both didn't want to talk
about the war and now I think; I wished I knew earlier and could ask
them more about it.. I used to play in the cellar as a kid, was drawn
to it for some reason and my grandma told me once where they would
hide the Jewish people. At the time (was 5 or something) I only felt sorry for them because it was such a damp and cold place.
I'm not sure how much you are 'into' history
and the World Wars. I love everything about it. I will write a
bit as well about a program I saw last night about World War one.
There was a group of people who died very unheroically during the
first world war. Deserters who were shot by their own troops.
Supposedly for being cowards or for running away. Or some were
executed because they had hit an officer, had fallen asleep while on
duty. This historian talked a bit more about them, as it's 100 years
since the start of WW1 this year. The Brits have a beautiful name for
this group: they call such casualties “Those who were shot by
Dawn”. Because these people were shot at dawn usually. The reason
was to encourage the others. General Hunter-Weston said that these
measurements were put in place, to put more fear into the troops for
desertion than for the enemy. The Brits were also the ones who killed
most of their own troops for this reason. The Germans however who
fought with millions of soldiers, only killed 48 of their own. The
Italians executed 750 of their own, the French 550, the Brits 350.
Those soldiers were tied to a pole at the break of day and the
executed had to be watched by their own comrades and troops. In the
case of the Brits, 50 of those soldiers were below 18 years old and
even more shocking is that 40% of those guys were volunteers in the
army. Can't quite get my head around that. Historians call it the
Lottery of Death, because certain soldiers were at more risk than
others to be executed. For instance, when you had dark skin or
were Irish, you were at 3 times as much risk to be actually executed
after being sentenced to death (not all those convictions resulted in
actual executions), than when you were white or British. The very
first Brit who got executed was Tomas Highgate, and he was a 17 year
old volunteer who expected a walk in the park and some quick earned
glory.
and the World Wars. I love everything about it. I will write a
bit as well about a program I saw last night about World War one.
There was a group of people who died very unheroically during the
first world war. Deserters who were shot by their own troops.
Supposedly for being cowards or for running away. Or some were
executed because they had hit an officer, had fallen asleep while on
duty. This historian talked a bit more about them, as it's 100 years
since the start of WW1 this year. The Brits have a beautiful name for
this group: they call such casualties “Those who were shot by
Dawn”. Because these people were shot at dawn usually. The reason
was to encourage the others. General Hunter-Weston said that these
measurements were put in place, to put more fear into the troops for
desertion than for the enemy. The Brits were also the ones who killed
most of their own troops for this reason. The Germans however who
fought with millions of soldiers, only killed 48 of their own. The
Italians executed 750 of their own, the French 550, the Brits 350.
Those soldiers were tied to a pole at the break of day and the
executed had to be watched by their own comrades and troops. In the
case of the Brits, 50 of those soldiers were below 18 years old and
even more shocking is that 40% of those guys were volunteers in the
army. Can't quite get my head around that. Historians call it the
Lottery of Death, because certain soldiers were at more risk than
others to be executed. For instance, when you had dark skin or
were Irish, you were at 3 times as much risk to be actually executed
after being sentenced to death (not all those convictions resulted in
actual executions), than when you were white or British. The very
first Brit who got executed was Tomas Highgate, and he was a 17 year
old volunteer who expected a walk in the park and some quick earned
glory. 
I read and saw in docu's that a lot of people actually cheered
the war, it had been quiet and boring I guess for a long time. Even
the painter Franz Marc was delighted and he and some artist friends
also went to the war zone, he got killed there. But anyway, this
Thomas ended up at the battle of Mons in France in 1914 already and
he freaks out at the sight of all the bloodshed and flees. Said he
made a mistake when he became a volunteer and wanted back to reality
at home. Nevertheless he was brought in front of this military court
(martial court in English? Dunno..) and got sentenced to death.
Usually they consisted of 3 officers, none juridically schooled and
the legal process only lasted between 20-30 minutes. When you were
lucky you had a 'prisoners friend' at your side but he was
neither schooled usually and more for show. There was an officer
named Eric Poole who got shell shocked and wounded in the Somme. At
the beginning of the war they didn't understand or know shell shock.
These people had seemingly no wounds but acted totally neurotic and
apathetic; it was only in 1917 that the first book about shell shock
was published. Poole was shell shocked too and his commander said; he
should be sent home, not to the court. But he was sentenced to death
nevertheless: “For the sake of the example” was written in his
dossier. The executioners where the guys from their own batalion,
6-12 of their comrades who got the order. They usually intoxicated
them with alcohol or morphine first (some had to be seated on a
chair) and placed a white envelop/marker on the chest on the place
of the heart. 
An anonymous eye witness said of the people who had
to execute the verdict, that afterwards these tough guys were sick,
were screaming in their sleep, vomiting and all the said was how
horrible it had been to shoot one of their own. The family often only
got a message that their loved one 'died of his wounds', although
some did get message that their kid was a deserter. They were buried
without any military signs. There is one exception, Albert
Ingham from the Manchester Regiment, who was also buried as a
deserter in an unnamed grave, and after the war his father hears what
really happened to his son. He then asks the right (and is awarded)
to add the real reason of his death on the tomb stone, which later
reads: “Shot at dawn. One of the first to enlist. A worthy son of
his father.” I find it touching, how a father posthumously tries to
restore some honor for his son and tells him he is proud of him.
That grave is still visited to this day by people and always has
flowers I heard.It became sort of a symbol of that whole practice.In 1919 already a debate
was held about these executions in the
UK. Dr Alexandre Irvine wrote in a newspaper that horrible things
happen in a war, but that it might be even more horrible to take the
life of one of your own, without knowing if he was a coward or a
martyr. And those processes were mock trials, but even in 1993 John
Major decides against giving these guys rehabilitation. Only in 2006
Tony Blair stated that executions were not the fate these soldiers
deserved. I just reread a section from Hemingways Farewell
to arms, where a military group returns to Italy and where the
carabinieri wait them up and execute all the Italian officers from
the group for withdrawing from the battle field. What madness.. I
add a picture of a beautiful statue that was erected in remembrance
of this group of executed soldiers. It is placed in the UK and
represents the 17 year old Herbert Burden who was executed. He is
surrounded by 350 execution poles, as symbols for those who had the
same fate. Ok that's the history lesson for this
week :)"
Lol, this made me chuckle yesterday; Joker replaces supermarket wine descriptions with his own funny versions in acts of 'vin-dalism'
Read more: http://www.dailymail.co.uk/news/article-2648522/Made-actual-blue-nuns-sea-caves-Joker-replaces-supermarket-wine-descriptions-funny-versions-acts-vin-dalism.html#ixzz33gzdWzrZ
7th of June 2014
The past week I've mostly really frantically been working on my uni/publishing work during the day and often in the evening too. I type out all the old reviews, dating from the 1890's till now, all sent to me in old paper form and they need to put typed in Word documents. I also make all the footnotes which I deem needed and do the research for them. But as always, the 6 authors I work for all send me their texts way too late, all at the same time and they all want it back yesterday and with zero errors. Yeh right ;) But I'm weird, either very postponing, lazy, leaving things till the last call, or when needed I get into this maniacal state and keep working on it till finished till morning, both not very healthy :/ Have been working way too much and too long on it the past weeks though, my head is spinning and the only peace and quiet I get is when out in the car doing shopping or going on a walk. But wellll, I'll dose it better next week.
When I see old people walking or sitting it is hard to imagine what they looked like as teenagers or youth, but its easier to imagine in what times and sort of world they must have grown up, as I read so much history. Time goes so fast and there is such a lot of chance and luck or bad luck involved when you are born and live. Those poor guys living in the 1940 times, in the movies and docu's I saw about it, the times seemed fine before the war started and then all these young men were forced to serve in a war. Well the same goes for 1914 obviously. Jews living in the 30s and 40s with flourishing companies, some living the high life and then all changes 180 degrees. I see their faces in docu's and wonder, if they were lucky enough to be born in a less brutal time, what would their lives have looked like? Most would have lived through the great times of the 50s and 60s and have families, and instead millions were wiped out. I wonder at times what the future grand kids of such victims might have looked like, how many millions have never been born because of what happened in those wars. Its not bad for the planet, I mean we have plenty of inhabitants as it stands, but on a human level its odd. And the same goes for me I guess. Lots of people I know plan their families and will have grand kids and so on, but I won't and that means I not only cut off any life chances for my own potential kids, but also that of the many potential grand kids and so on. This whole heritage tree line and I single handedly cut it all off. It's a strange feeling at times, but maybe I think too much about it. I mean, the millions of kids that would have been here had those world war soldiers not been killed never appeared and does the world miss them? I guess not.
These pictures I took at a special international art event (gosh this sounds bigger than it really was) last year, my friend is the one in the bed, doing a type of performance. Music from the 20s was heard playing in the room and music like this song from Lionel Belasco
9th of June 2014
I have been diving into accents and dialects lately. Always loved them and a friend from the UK has a thing for them too an d we tend to discuss dialects now and then. In Holland, which is a very small (but overcrowded) country, there are tons of different dialects. My mom and her whole family is from the east and they speak a type of gibberish seeming slang that is very hard to follow for everyone not accustomed to it. This friend speaks Cumbrian. This is the accent my mom speaks with her family:
(scroll
to 0:50). I love scottish, maybe because it sounds a bit earthy and
old, dunno, eccentric for sure and distinguishable, just like Welsh,
from what I heard. http://www.lakelanddialectsociety.org/Dialect%201856%20A%20to%20L.htm And
I can see some scandinavian sounding sounds, would have never known
they were derived from old Norse. Glaswegian friends seem to write their Scottish phonetically now on fb, so for instance: Nae slice, deffo naw a Scottish breaky.... will have a wee look the morra fir ye" Maybe
they like to accentuate their individuality that way, or it is a type
of silent agreed on community online thing, where you only can become
part of if you speak the same way or understand glaswegian; or you
probably also have to be born there to really count as a full 'member'? Its
always interesting to see how people like to segregate themselves and
create these subgroups. Like Orwell did in Animal Farm, they all start
off as equals but within no time some will select themselves out and
distinguish their subgroup from the others? So the Glaswegians seem to
like to have this inner clan circle thing where they stand out and unite
based on their cultural identity and language, and the same seems to
happen in many regions, where ppl have their own dialects, accents,
local flag, tartan dress color and what not. Just like
in sports and football, maybe it is a deep rooted drive from people to
belong to a group and to stand out from the big crowd. Must have made us
feel safe back in the prehistoric days, but maybe it explains the venom
and aggression that can come with belonging to a specific football team
fan base. I understand how that goes, we used to get mighty wound up
during many football games and I can fully understand how in the heat of
the game and as a result of rivalry fans can clash and even feel like
getting into mini battles. Just the heat of the moment and perhaps it
appeals to this age old 'clan/tribe' desire people had in order to
survive? Maybe that might be why despite having prosperity, the rates
for depression are so high in the western society? People feel maybe
lost and no longer part of small communities and everything has become
so individualized and there is so much technology taking over. Then
in Glasgow there is another dividing thing, I went to a couple of Old
Firm matches and it was carnage and mayhem in the city afterwards every
time, really violent. Was explained about the long standing rivalry
between Celtic fans and the Huns, how the city is divided in catholic
and protestant areas and how this also translates in soccer; it went so
far that these Celtic fans I know could spot a 'hun' based on facial
features or last names! 
Oh and i read this over the weekend; thought it was pretty funny, albeit slightly simplified. Do you know many of these generation Y ppl in your
life? I have them plenty in my friends circles and fear I might even be a
bit of a GYPSY myself. How much of this applies to you and what are
your thoughts about this analysis? http://waitbutwhy.com/2013/09/why-generation-y-yuppies-are-unhappy.html
"Why Generation Y Yuppies Are Unhappy"
Say hi to Lucy.
Lucy is part of Generation Y, the generation born between the late
1970s and the mid 1990s. She’s also part of a yuppie culture that makes
up a large portion of Gen Y. I have a term for yuppies in the Gen Y age group—I call them Gen Y
Protagonists & Special Yuppies, or GYPSYs. A GYPSY is a unique
brand of yuppie, one who thinks they are the main character of a very
special story. So Lucy’s enjoying her GYPSY life, and she’s very pleased to be Lucy. Only issue is this one thing: Lucy’s kind of unhappy. To get to the bottom of why, we need to define what makes someone
happy or unhappy in the first place. It comes down to a simple formula:
It’s pretty straightforward—when the reality of someone’s life is
better than they had expected, they’re happy. When reality turns out to
be worse than the expectations, they’re unhappy. To provide some context, let’s start by bringing Lucy’s parents into the discussion:
They were taught that there was nothing stopping them from getting
to that lush, green lawn of a career, but that they’d need to put in
years of hard work to make it happen.
After graduating from being insufferable hippies, Lucy’s parents
embarked on their careers. As the 70s, 80s, and 90s rolled along, the
world entered a time of unprecedented economic prosperity. Lucy’s
parents did even better than they expected to. This left them feeling
gratified and optimistic.
With a smoother, more positive life experience than that of their
own parents, Lucy’s parents raised Lucy with a sense of optimism and
unbounded possibility. And they weren’t alone. Baby Boomers all around
the country and world told their Gen Y kids that they could be whatever
they wanted to be, instilling the special protagonist identity deep
within their psyches. This left GYPSYs feeling tremendously hopeful about their careers,
to the point where their parents’ goals of a green lawn of secure
prosperity didn’t really do it for them. A GYPSY-worthy lawn has flowers.
This leads to our first fact about GYPSYs:
GYPSYs Are Wildly Ambitious
To be clear, GYPSYs want economic prosperity just like their parents did—they just also want to be fulfilled by their career in a way their parents didn’t think about as much. But something else is happening too. While the career goals of Gen
Y as a whole have become much more particular and ambitious, Lucy has
been given a second message throughout her childhood as well:
This would probably be a good time to bring in our second fact about GYPSYs: GYPSYs Are Delusional. “Sure,” Lucy has been taught, “everyone will go and get themselves some fulfilling career, but I am unusually wonderful and
as such, my career and life path will stand out amongst the crowd.” So
on top of the generation as a whole having the bold goal of a flowery
career lawn, each individual GYPSY thinks that he or she is destined for something even better - A shiny unicorn on top of the flowery lawn.
So why is this delusional? Because this is what all GYPSYs think, which defies the definition of special:
According to this definition, most people are not special—otherwise “special” wouldn’t mean anything. Even right now, the GYPSYs reading this are thinking, “Good point…but I actually am one of the few special ones”—and this is the problem. A second GYPSY delusion comes into play once the GYPSY enters the job market. While Lucy’s parents’ expectation was that many years of hard work would eventually lead to a great career, Lucy considers a great career an obvious given for someone as exceptional as she, and for her it’s just a matter of time and choosing which way to go. Her pre-workforce expectations look something like this:
spe-cial| ‘speSHel |
adjective
better, greater, or otherwise different from what is usual.
According to this definition, most people are not special—otherwise “special” wouldn’t mean anything. Even right now, the GYPSYs reading this are thinking, “Good point…but I actually am one of the few special ones”—and this is the problem. A second GYPSY delusion comes into play once the GYPSY enters the job market. While Lucy’s parents’ expectation was that many years of hard work would eventually lead to a great career, Lucy considers a great career an obvious given for someone as exceptional as she, and for her it’s just a matter of time and choosing which way to go. Her pre-workforce expectations look something like this:
Unfortunately, the funny thing about the world is that it turns out
to not be that easy of a place, and the weird thing about careers is
that they’re actually quite hard. Great careers take years of blood,
sweat and tears to build—even the ones with no flowers or unicorns on
them—and even the most successful people are rarely doing anything that
great in their early or mid-20s. But GYPSYs aren’t about to just accept that. Paul Harvey, a University of New Hampshire professor and GYPSY expert, has researched this,
finding that Gen Y has “unrealistic expectations and a strong
resistance toward accepting negative feedback,” and “an inflated view of
oneself.” He says that “a great source of frustration for people with a
strong sense of entitlement is unmet expectations. They often feel
entitled to a level of respect and rewards that aren’t in line with
their actual ability and effort levels, and so they might not get the
level of respect and rewards they are expecting.” For those hiring members of Gen Y, Harvey suggests asking the
interview question, “Do you feel you are generally superior to your
coworkers/ classmates/etc., and if so, why?” He says that “if the
candidate answers yes to the first part but struggles with the ‘why,’
there may be an entitlement issue. This is because entitlement
perceptions are often based on an unfounded sense of superiority and
deservingness. They’ve been led to believe, perhaps through overzealous
self-esteem building exercises in their youth, that they are somehow
special but often lack any real justification for this belief.” And since the real world has the nerve to consider merit a factor, a few years out of college Lucy finds herself here:
Lucy’s extreme ambition, coupled with the arrogance that comes
along with being a bit deluded about one’s own self-worth, has left her
with huge expectations for even the early years out of college. And her
reality pales in comparison to those expectations, leaving her “reality
– expectations” happy score coming out at a negative. And it gets even worse. On top of all this, GYPSYs have an extra problem that applies to their whole generation:
GYPSYs Are Taunted Sure, some people from Lucy’s parents’ high school or college classes ended up more successful than her parents did. And while they may have heard about some of it from time to time through the grapevine, for the most part they didn’t really know what was going on in too many other peoples’ careers. Lucy, on the other hand, finds herself constantly taunted by a modern phenomenon: Facebook Image Crafting. Social media creates a world for Lucy where A) what everyone else is doing is very out in the open, B) most people present an inflated version of their own existence, and C) the people who chime in the most about their careers are usually those whose careers (or relationships) are going the best, while struggling people tend not to broadcast their situation. This leaves Lucy feeling, incorrectly, like everyone else is doing really well, only adding to her misery:
GYPSYs Are Taunted Sure, some people from Lucy’s parents’ high school or college classes ended up more successful than her parents did. And while they may have heard about some of it from time to time through the grapevine, for the most part they didn’t really know what was going on in too many other peoples’ careers. Lucy, on the other hand, finds herself constantly taunted by a modern phenomenon: Facebook Image Crafting. Social media creates a world for Lucy where A) what everyone else is doing is very out in the open, B) most people present an inflated version of their own existence, and C) the people who chime in the most about their careers are usually those whose careers (or relationships) are going the best, while struggling people tend not to broadcast their situation. This leaves Lucy feeling, incorrectly, like everyone else is doing really well, only adding to her misery:
So that’s why Lucy is unhappy, or at the least, feeling a bit
frustrated and inadequate. In fact, she’s probably started off her
career perfectly well, but to her, it feels very disappointing. Here’s my advice for Lucy: 1) Stay wildly ambitious. The current world is bubbling
with opportunity for an ambitious person to find flowery, fulfilling
success. The specific direction may be unclear, but it’ll work itself
out—just dive in somewhere. 2) Stop thinking that you’re special. The fact is, right
now, you’re not special. You’re another completely inexperienced young
person who doesn’t have all that much to offer yet. You can become
special by working really hard for a long time. 3) Ignore everyone else. Other people’s grass
seeming greener is no new concept, but in today’s image crafting world,
other people’s grass looks like a glorious meadow. The truth is that
everyone else is just as indecisive, self-doubting, and frustrated as
you are, and if you just do your thing, you’ll never have any reason to
envy others.
10th of June 2014
 |
| Picture by FKA Twigs, tip from Matthew, thanks :) |
In this Daily Mail article, a story is told about a woman with severe ongoing pain triggered by a stroke. She ended her life when all hope for the funding of a special operation was blocked. I guess that when people are submitted long enough to debilitating pain, this can make seemingly great lives seem unbearable for them at some point. I would always keep going personally, unless you can't take it anymore, but always keep in mind that if there is still outlook on improvement and even a short time of some enjoyment a day, life is worth hanging onto. But this article shows again the destructive powers of chronic pain on any individual. I saw a documentary about a Dutch woman who had developed very extreme ear ringing sounds. She heard screaming high pitched noises in her head and they grew worse and worse. She had severe head aches from them and couldn't tolerate the horrible sounds anymore at some point. When doctors couldn't help her anymore she ended her life. She was also a beautiful woman in her late 40's, with teenage children and in the docu she explained why she would end her life and the viewer heard the type of noise she heard all the time, and to be honest, I had to turn the sound of the television down, it was prettybb awful. I posted more of the article on my blog post Rosacea and Depression.You can also read the full diary entry here. She writes for instance in this longer diary entry: "'I didn’t realize... you can be in absolute agony and sometimes there is nothing that can be done to help you'
They beat Spain, the European and World champion, with 5-1.
18th of June 2014
Received such a lovely email from a person who I have been in contact with for some time since she developed flushing, burning and currently even a very nasty full face rash and swelling. Hopefully the doctor will find out very soon what is causing it.
"Thanks! I was saying to my boyfriend just now on skype what a kind person you were and how I really identified with your blog and the way that you write - it shows through that you are very creative, whimsical with a romanticist streak, yet logical and hardheaded - something about it really touched me and struck a chord (and as I mentioned before the fact that you are putting all this information out there has undoubtedly helped dozens of people going through the same thing). And I could see that, even though your life has been profoundly affected by this illness (as I have no doubt many people's are by their own private struggles), you are so much more than that, and it doesn't define you even though you may feel like that at times - which made me realize that, even if I feel like this is defining me at the moment, it doesn't have to always be that way and an external observer would see a lot more to me than that. I think the hardest thing about it for me psychologically is the feeling of not being in control - in my life, I've been so used to setting goals and going after them and achieving them with success, and now suddenly here is something which is persistently thwarting my logical attempts to treat it and threatening to derail the whole thing. But not in a spectacular way that anyone would easily comprehend, like say becoming a tetraplegic or getting cancer - in a pernicious, much more subtle and banal way "Oh, so your. face gets a bit red; that must be annoying". I suppose we should be very thankful we don't have something worse. I know what you mean - even if it was lupus, at least then there are very specific medications they prescribe to treat it that should help. It feels like it's a puzzle that someone has the answer too but they are hiding - just come out and give me the answer already, mystery puzzle person! I just read a book called Les Catilinaires by Amelie Nothomb; it's about an old couple who have only ever wanted to live in solitude by themselves. Finally, they move into their dream house in the middle of nowhere, with only one neighbor, and are extremely happy. Suddenly, they start receiving visits from their neighbor Monsieur Bernardin who comes to their house from 4 - 6PM every day and just sits in their living room without saying anything, bringing down the mood, impervious to questions OR attempts to keep him out of the house (he bangs persistently on the door until they let him in). The book is about how the narrator (the old man) slowly starts to mentally unravel faced with this insidious, seemingly trivial yet terrible menace. That's kind of what I fear at the moment - but I can't let this happen! I'll keep you updated. Stay well!
Touched by her nice words and I felt she described very well what skin diseases do to you, mentally. I talked with another friend about abusive ex partners and how she has a very hard time letting go and setting up boundaries, because a little part of her still misses him, and we came to the conclusion that often it is not the person you miss, but the way that person filled up some of the emptiness and loneliness and boredom we might feel now and then, being trapped indoors with red faces. I know for sure that's what kept me hanging on to a long term, destructive relationship. Destructive in both ways, because I caused pain and misery too, by being moody and stubborn and for keeping hopes up where I should have called it quits a long time ago. up even worse off that you already were (abusive partners, threats, mental distress and so on). The start of a new relationship is a good temporary distraction of the drudgery of things; the hormones and feelings of joy that take over than have been delightful for me, but even those feelings won't stay for ever. Maybe good friends can give a sort of similar thrill when it matches well.19th of June 2014
I notice that when I don't scrub my skin, and just clean it lightly with bottled water and cotton pads, I develop a thick layer of dead skin over the time frame of about 4 weeks. For some time, this actually looks good; it seems to cover and mask some of the redness and makes my skin more protected I guess; less paper thin. But after a certain time, I think the 5 week mark, I notice a lot of p&p's, paps and other rashes appearing. And they come from the bacteria building up under this layer of skin I think. So I have to remove it then, and when I put good force on the cotton pads, I strip the dead skin layer off pretty easily. But my skin is super red and shiny after that for a few days, it almost looks and feels as if I gave it a scrub or even a skin peel. I made some pictures of this. It looks ugly here but now 1,5 weeks later my skin is without any red dots, its even and its smooth.
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| All art here is from Kees Van Dongen |
I even wonder if Martin added ideas from European philosophers into his books, like Machiavelli. My favorite philosophers to read are the grumpy pessimist; Schopenhauer, Nietzsche. Humankind is bad by nature, that sort of stuff. I feel honestly that we act good partly by social pressure and expectancy but that a kid is not a blank sheet and has selfish and manipulative tendencies by nature. It needs correction and steering to make something decent out of it and just a glance at how kids treat each other at the schoolyard should confirm this idea. I have little connection with pristine idealists, neither under the philosophers.. Some people are downright ignorant, self entitled, vindictive and narcissistic and that's exactly what George Martins world looks like. For sheer joy I sometimes read the comments below episode recaps, and there are always some people who say they no longer can watch GoT as they can't take the dark, evil world view of the author and the slaughtering of their hero's. That its not realistic with real life. I cant believe there are people actually thinking that. Once you know something you can't undo it, once you know what history was like, you can't see only roses and unicorns anymore when you look around you. I'm not trying to sound pathetic here but truthfully.. the things that truly lift my life and mood nowadays are insightful readings, finding good music or art or movies or tv programs, or talking to insightful people with a twisted view on life. So a good interview with Martin gets me on the edge of my seat. I just feel there is a good but also a bad side to many people. Even the Greek philosophers thought about this, most people have both traits and good and bad characteristics and according to some the good prevail, and others think that the bad tends to take over more. To everyday life; see how mothers all compare their kids achievement with one another? And acting out as the perfect mothers, judging others on it? That's innocent right? But it's hardly positive. At work, smug coworkers who work their way up over other people's back if needed. I know, their stimulus might be getting rewarded by it, and sure that's true, but what uncharming motives. Moms pretending to be perfect and bitching and gossiping about each other, what is to be gained there? Feeling better about yourself by looking down on others. Reveling in other people's misery or misfortune, I guess that's the gain. Dunno, its just stuff like that.
So, Schopenhauer. He thought that life comes to us as a presentation, and one of its laws is that everything needs to have a cause. Every 'why' has to be answered with a 'because'. A light bulb can only shine because there is a cause for this, and the same goes for the apple falling to the ground. We can live in the world because of these (scientific) laws. He believed in metaphysics, and called it The Will. It's an internal process and connected with our consciousness of ourselves; we know we exist even though we don't observe ourselves, normally. It drives us and S thought that it's even this Will that makes sure we keep breathing -even though we don't think about it- and that we want to procreate. The world also has a Will -the unconscious Worldly Will- , and at the time S thought this will is the force that moves the planets and that causes chemical processes on a molecular level. The World Will is free according to S (because she is everything and nobody can limit or restraint her), but our internal human will is not free, and is subject to the World Will. It is therefore irrational. Our internal will and world are made up of feelings and beliefs and experiences. And our rational capacities are a tool for this Will. We aren't driven therefore by logic and reason, but much more by desires and feelings (of which the strongest one is the desire to survive and live). This makes Schopenhauer a pessimist. But this desire to exist, that is present in everything around us, is also the source of endless suffering he thought, as everything fights to exist and no desire will be satisfied definitively or for a long time. And all that without any true reason or goal. (except survival of the species I'd say). So, this will is an abstract concept here. But our will is determined by motives. You can't want two opposite thing at the same time. You can doubt, debate, change your mind, ponder, but the eventual Act of Will, shall be a necessary result of this outcome.
There is a way out from this determinism (where everything in the world battles for existence and people are driven by egocentric motives), but it requires a higher ethical viewpoint. This is not a given, it is a higher level of consciousness and it would embody compassion. Thinking and intellectual insights provide this according to Schopenhauer. Art (what else lol) offers temporary salvation. The artist is the genius; he transcends Plato's idea of reality being a mere reflection of a reality on a wall (and coming to us as this reflection of reality, a second hand experience therefore). The artists depicts this reality and brings it into contact with the viewer. But everybody can experience this themselves, for instance by going into nature and by really concentrating on something you see, so that the ego and personality seem to fall away for a moment. We become a (temporary) will-less subject to observation then, and can become one with the object. Music, according to S, speaks straight to the Will and touches the essence of our existence. But as soon as a simple thought about our personal will erupt again (and burst that bubble of mindlessness), we are thrown back to our normal state. The world and reality are not driven by intellect and reason but by instincts and passions etc. Rationality is more of a superficial veneer, which we use to get the illusion that we understand the world and control it. But underneath we are actually at pray and played by all sorts of powers and impulses and longings for satisfaction over which we have little control and not that much influence. I mean, I think you can restraint your impulses with willpower to some point, and have some control over acting on them yes or no, but you can't influence them really and change them; these inner drives and impulses are there to stay. Living = suffering, basically :) This was a rather revolutionary point of view at the time, as philosophers before him had mostly seen the world as a reasonable and rational place, hence why we could understand her. S felt that science merely is focused on the way the world is presented to us, but that her true nature is incomprehensible.
Lol, Schopenhauer wasn't fond of women and felt they were childish and whimsical and shallow :) I think there are some Freudian things going on with Schopenhauer too. Our conscious stands often powerless against subconscious drifts for food, lust, sex and violence (oh and power perhaps too?). If you look at it like this, all our efforts to look civilized and in control of ourselves are just a show. I do believe this to be true partially, even though you and I might think that we are in charge over our lives and behavior, I really doubt we are. We can make simple every day decisions but the big ones are all made for us by these strong inner drives. Hence why people across the world are all busy doing the same things, longing for the same things, treating each either in the same shitty ways often even. It might not be so much the human evils that are triggered by rewards in terms of money and so on, but I'd say its the good deeds we force ourselves to do, or train ourselves to do, or get taught to do, that pay of, so that we continue to do it. Being a good friend can be tiring and rather conflicting with our personal needs at times, but it pays off, because in order to have a safe and a healthy mental existence we need friends and allies. And its mostly in our genetic make up anyway and in our brain structures to experience joy and calm and contentment when we are social, because that has been a prime survival thing in the past, so evolutionary it has become part of our make up, or so I read. When we do good deeds, we build our image and ego and persona. I guess that's a pessimistic way of looking at some of these positives :) But if I don't force myself consciously to be better, more considerate and caring than I might naturally be, none of that stands up against time, so I do it. And lets be honest, we probably paint the nicest image of ourselves. Put the veneer right up, even when talking honest over all sorts of stuff :)
*Plato said that the divine mind (spirit) is fed by knowledge and understanding. *Socrates wrote a Symposium where he describes how men go through phases in life. First, from early youth, one has to focus on physical beauty. At first you fall in love with one body, and then you realize the beauty of one random body is the sister of of that of another body, and soon you will know that it is madness to not consider the beauty of all bodies to be one and the same, which makes you prone to fall in love with every beautiful body you see. Later, he will discover the beauty of the soul and mind as more honorable than the physical, so that he will be content as soon as he finds a decent soul in somebody. And the next step is to discover the beauty in science. By then he sees beauty in all regions of life and shapes and forms, and no longer limited to the superficial body. Well, that still hold some truth today, doesn't it? *Aristotle wrote rules for the Tragedy. It usually consist of these elements, and focuses on both an animalistic (emotional/sensual) level as on reason:-Hero is taunted by fate
-hero will be punished severely for an unwanted mistake
-the tragedy of life is that one causes evil no matter what, and that one will be punished no matter what.
-the tragic hero is placed high in the hierarchy of society, and contains all human traits. Also a hero will be guided by grief, jealousy, aspiration, pride and fear. He is also irritable like the rest of us and not always as alert. He is the magnification of mankind and therefore everybody can relate and identify with him. Only therefore the goal of Greek Tragedy, Catharsis, can be reached. (Catharsis is a sort of emotional cleanse, triggered by extreme emotions like laughter, grief, sadness. The Greek believed in a connection between a healthy body and mind and catharsis was a way to keep the mind in good shape). Undergoing and releasing such emotions in the theater would help people deal with similar feelings (or situations) In every day life. (Well that still holds up too I think, people love to learn and experience things or digest stuff by watching movies that appeal to us, or stage plays even still, or even music).
22nd of June 2014
Over the week I was invited for a garden party by acquaintances who own a beautiful old house with a big garden. They organize a little jazz session each year, this time a dixie style band was invited. Everybody brought something to eat. It was too warm outside for me but I really liked to go. A Scottish friend would come as well and we get along, like to chat about stuff that interests us both. As soon as I arrived and had to start introducing myself to other people, I got flushed from the first question somebody posed me. So ridiculous, I am not shy or anything but had been keeping my skin calm and cool all day for this event. Wham, gone in 5 seconds lol :) After awkwardly introducing myself and some small talk the friends and I managed to find a table right in front of the band and Scottish friend has the same social awkwardness as me in group situations, so was very happy to get seated asap, get some wine (in his case) and just to relax. Was a really nice low key evening, with nice music and food and managed to get to talk to some nice folks once I was cooled down a bit again. I brought a bag with small ice cubes and kept my water cold that way all night.
The World Championship (football/soccer) is still in full swing and the Dutch are still in the game!! We are watching it with a sense of nationalism and excitement and pride, but most of all a lot of fun. Read a good article on the train today about soccer, the world cup, I'll write the summary down below. Having a little detox moment from the football. Its silly, but am really loving this tournament and the way it seems to stir everybody up to talk and debate about it. Can't wait for the game tomorrow. This article in the news paper was really good I thought. It was from the journalist David Winner. He basically said that football is replacing religion and politics. In the 1950's movies were still prevalent, and good movies are considered 'a battle field of love, hate, violence, action, death; in one word: emotion'. And that is what football brings today. It is nowadays more popular than the movies are, according to this author. Or literature. Because it arouses entire countries, like now with the World Cup. Beautiful cover stories on football in the newspapers, and when a country plays well, the entire population gets a rush of confidence and a boost. And also projects/emits this to the rest of the world. For instance, the Belgian team, named the Red Devils, are doing very well this tournament and many of their players are African, so the Walonians and the Flemish are on great terms with each other at the moment (as long as the cup lasts) and enjoy their shared Belgian nationality. (Just for now of course). This author then links national football victories (or losses) to historical events, like the Germans winning from the Hungarians in 1954. The Germans had a clumpy team; here is a wonderful Dutch word for you for this, although its actually Yiddish: schlemiel. It means loser, pauper, broddler, it's used a lot in Dutch language. But when that happened very unexpectedly, it gave the Germans a boost and the author states that it even helped and was a key moment in the post war, West German resurrection. The English however are supposed to experience some self doubt and anguish over the ongoing bad performances. He says: "As soon as the English team is kicked out, the whole nation seems to sink deep into a swamp of self hatred". Bit exaggerated perhaps this? And they will combat this with gallows humor and analysis of where it all went wrong exactly. One of such jokes; The English football team visits an orphanage in the Brazilian Favela's "It was heart breaking to see those sad faces without hope", said Jose, 6. Hmmm, I'm sure there are better ones, but this is the stuff the Dutch tend to like (aka, no good sense of humor).
Here however the national atmos skyrockets, people are all excited and more friendly with each other, I was waiting in line to buy a news paper and the old man in front of me had this lively talk with the shopkeeper about the teams at the World cup and soon everyone else waiting in line was chiming in, it was really nice. It's so alive because we are still in the tournament, obviously. But the lost final match in '74, where we played "totaalvoetbal" and should have won, caused a big crush of morale. He wonders why is affects us so strongly and thinks that now that religion and politics are no longer offering the type of platforms for shared experiences and passion as they used to be, football fills in the void. It has semi religious aspects, like the ritually wearing of club colors, weekly gatherings with fellow believers, chanting songs together, and it also has a link with warfare. It appeals to our hunting and gathering instincts. Another reason for its (almost) worldwide success has to do with the typical characteristics of the game. Its rules are easy enough for a kid to understand, yet complicated enough to keep intelligent minds occupied. It has provided a very universal language, especially when watched on the tele by many (true, I watch, others watch, we discuss the same game online, my US friend and UK one send in their opinions at the same time, which makes it all extra great). The game revolves around pure physical exertion, but yet it follows most of the rules of classical storytelling. But, this story makes itself; it happens within a given and set time frame (90 minutes, just like the duration of most movies) and unrolls before our eyes; there is this density of time, place and action. It results in a soap series with endless story lines, heroes, antiheroes, to identify ourselves with. Also, with most other ball sports its easier to score points/goals. With football its the rarest of things, which makes it a valuable good. Fans are constantly hovering between hope and fear, awaiting the next goal. Unique about football is, that you can wonder from minute to minute, what will happen? This unpredictability is very captivating. Power and money are not always guarantees for success; the stronger teams can be beaten by weaker teams. We like to complaint about weak or irregular referees, but this unreliability also adds to the drama of football. We accept the consequences of it often as fate or chance and it makes it all like a Greek tragedy and pretty addictive. The action is unfolding right before our eyes and the outcome will change with every game. Here are some embarrassing penalties :) (gosh not sure I'm the only one, made me tear up when I watched it again, so lame)
Yaaaaaayyyyy the Dutch football/soccer team are through to the semi finals :) :) :) Goshhh that was nerve wrecking last night. Neithe rus nor Coasta Rica scored in the regular time, and neither in extra time, so it had to be resolved with penalty shoot outs. The Dutch had countless chances and missed them all in the game, Costa Rica had about 2 chances and both later on in the extra time. You could sense that they aimed at penalties from the start, which made it very tough to play them' they barricaded their 16 meter area and just blocked blocked blocked everything. Dutch are historically not great with penalties but our goaly Tim Krul from Newcastle United was so fab. Had to laugh, that psychological warfare he did, the pacing in front of players and all that distracting. He would come up to them, look them straight in the eyes, make mafioso signs like "I am watching you!", shouted Vamos and all sorts of psychological warfare. It's so UNDUTCH to do that, usually they are so down to earth and 'normal' that everybody I know loved it and got excited that just perhaps, this time we would not go down on penalties. And we didn't! All our 5 boys shoot them precise and wel, and 2 of the Costa Ricans missed, or should I said, Krul saved! Could somehow see in Ruiz face he would miss (the first to miss from them). Somehow before he kicked you could see some twitch of doubt and nerves and we were like, oh hes go going to miss! Now we are facing Argentina in the semi final. I think of the 3 left, Argentina is the most desirable one to play for us. Brazil were pretty good their last game and the Germans.. well are German. Always cool calm and collected and ready for the kill. Although they still seem to have a weaker team now than in the past tournaments. Argentina played decent today but still far from good. The Belgians seemed so blocked and nervous in the beginning, and then to play behind the facts and against a defensive Argentina, not easy... But Argentina most likely will attack more than Costa Rica, giving us more space to score. Playing against such an ultra defensive team as CR is usually toughest for the Dutch so fingers crossed
Robben is a machine this tournament! Van Persie was pretty unfortunate, so many times off side (and some times poor decisions from the line guy), couple of clear chances missed.. Hahaha Krul the keeper, the way he made that mafioso sign with his finger under his eye; I saw you, I keep my eye on you. And the aggressive pacing; given Hollands poor penalty record, I am glad he did that. Costa Rica coming back int he extra time and holland losing the momentum. I think they had their first proper chance in extra time but they hoped for the knock out in the last time I felt just closing all the frontiers throughout the game, not letting holland score or pass and then finishing it in extra time or with shoot outs that was our worst nightmare scenario so I hope that Argentina will play actually, and go forward and that it will also be a more attractive game to watch. wow my 4 favorite teams in the final. I hope it will be an all European final.
Official royal song: "I'm no protocol fascist. People have to refer to me as Willy. Because with that name I can be at ease. Call me with my own name.
"Dear People. I made this video message to thank you all for the best day of my life. It all started already great, with an elongated volvo to one of the best Chinese restaurants. After some shots there was also some room for silliness, with my mother and my girlfriend. For all the important guests, we hired special Conexxian busses (known as the shittiest and least reliable company int he country, Nat). And when everybody was here we sang the opening tune. Then the time was there: the oath. ("I solemnly promise to be a guilty king". "Uhm, sorry, Minister Kleinsma needs to go to the loo"). Jetta Kleinsma had to go to the loo during the oath. After the oath we had to go on canal boats to see performances.
"This weekend we had a big party, to thank my mum for the good years. The press and NOS (our version of BBC, nat) hired the Ahoy for this, with all sorts of artists and performers for my mom. But the best part was that me and Max had played a trick on my mum. So as a joke we flew in a grindcore band from Canada.
Putin: "Do you want to drink something or what? I've got a bottle of vodka. Brew it myself from sugar cane. Take it! "
Willy: "So. So rascal!"
28th of June 2014
Tried to make some modern Daguerreotype pictures, by using an old schmutsy mirror.
Was at my local record shop and they know my music taste a bit and came up with some fab new albums.
5th of July 2014
Touching, this girl made photo's of herself for 6,5 years while battling severe depression
The World Championship (football/soccer) is still in full swing and the Dutch are still in the game!! We are watching it with a sense of nationalism and excitement and pride, but most of all a lot of fun. Read a good article on the train today about soccer, the world cup, I'll write the summary down below. Having a little detox moment from the football. Its silly, but am really loving this tournament and the way it seems to stir everybody up to talk and debate about it. Can't wait for the game tomorrow. This article in the news paper was really good I thought. It was from the journalist David Winner. He basically said that football is replacing religion and politics. In the 1950's movies were still prevalent, and good movies are considered 'a battle field of love, hate, violence, action, death; in one word: emotion'. And that is what football brings today. It is nowadays more popular than the movies are, according to this author. Or literature. Because it arouses entire countries, like now with the World Cup. Beautiful cover stories on football in the newspapers, and when a country plays well, the entire population gets a rush of confidence and a boost. And also projects/emits this to the rest of the world. For instance, the Belgian team, named the Red Devils, are doing very well this tournament and many of their players are African, so the Walonians and the Flemish are on great terms with each other at the moment (as long as the cup lasts) and enjoy their shared Belgian nationality. (Just for now of course). This author then links national football victories (or losses) to historical events, like the Germans winning from the Hungarians in 1954. The Germans had a clumpy team; here is a wonderful Dutch word for you for this, although its actually Yiddish: schlemiel. It means loser, pauper, broddler, it's used a lot in Dutch language. But when that happened very unexpectedly, it gave the Germans a boost and the author states that it even helped and was a key moment in the post war, West German resurrection. The English however are supposed to experience some self doubt and anguish over the ongoing bad performances. He says: "As soon as the English team is kicked out, the whole nation seems to sink deep into a swamp of self hatred". Bit exaggerated perhaps this? And they will combat this with gallows humor and analysis of where it all went wrong exactly. One of such jokes; The English football team visits an orphanage in the Brazilian Favela's "It was heart breaking to see those sad faces without hope", said Jose, 6. Hmmm, I'm sure there are better ones, but this is the stuff the Dutch tend to like (aka, no good sense of humor).Here however the national atmos skyrockets, people are all excited and more friendly with each other, I was waiting in line to buy a news paper and the old man in front of me had this lively talk with the shopkeeper about the teams at the World cup and soon everyone else waiting in line was chiming in, it was really nice. It's so alive because we are still in the tournament, obviously. But the lost final match in '74, where we played "totaalvoetbal" and should have won, caused a big crush of morale. He wonders why is affects us so strongly and thinks that now that religion and politics are no longer offering the type of platforms for shared experiences and passion as they used to be, football fills in the void. It has semi religious aspects, like the ritually wearing of club colors, weekly gatherings with fellow believers, chanting songs together, and it also has a link with warfare. It appeals to our hunting and gathering instincts. Another reason for its (almost) worldwide success has to do with the typical characteristics of the game. Its rules are easy enough for a kid to understand, yet complicated enough to keep intelligent minds occupied. It has provided a very universal language, especially when watched on the tele by many (true, I watch, others watch, we discuss the same game online, my US friend and UK one send in their opinions at the same time, which makes it all extra great). The game revolves around pure physical exertion, but yet it follows most of the rules of classical storytelling. But, this story makes itself; it happens within a given and set time frame (90 minutes, just like the duration of most movies) and unrolls before our eyes; there is this density of time, place and action. It results in a soap series with endless story lines, heroes, antiheroes, to identify ourselves with. Also, with most other ball sports its easier to score points/goals. With football its the rarest of things, which makes it a valuable good. Fans are constantly hovering between hope and fear, awaiting the next goal. Unique about football is, that you can wonder from minute to minute, what will happen? This unpredictability is very captivating. Power and money are not always guarantees for success; the stronger teams can be beaten by weaker teams. We like to complaint about weak or irregular referees, but this unreliability also adds to the drama of football. We accept the consequences of it often as fate or chance and it makes it all like a Greek tragedy and pretty addictive. The action is unfolding right before our eyes and the outcome will change with every game. Here are some embarrassing penalties :) (gosh not sure I'm the only one, made me tear up when I watched it again, so lame)6th of July 2014
Yaaaaaayyyyy the Dutch football/soccer team are through to the semi finals :) :) :) Goshhh that was nerve wrecking last night. Neithe rus nor Coasta Rica scored in the regular time, and neither in extra time, so it had to be resolved with penalty shoot outs. The Dutch had countless chances and missed them all in the game, Costa Rica had about 2 chances and both later on in the extra time. You could sense that they aimed at penalties from the start, which made it very tough to play them' they barricaded their 16 meter area and just blocked blocked blocked everything. Dutch are historically not great with penalties but our goaly Tim Krul from Newcastle United was so fab. Had to laugh, that psychological warfare he did, the pacing in front of players and all that distracting. He would come up to them, look them straight in the eyes, make mafioso signs like "I am watching you!", shouted Vamos and all sorts of psychological warfare. It's so UNDUTCH to do that, usually they are so down to earth and 'normal' that everybody I know loved it and got excited that just perhaps, this time we would not go down on penalties. And we didn't! All our 5 boys shoot them precise and wel, and 2 of the Costa Ricans missed, or should I said, Krul saved! Could somehow see in Ruiz face he would miss (the first to miss from them). Somehow before he kicked you could see some twitch of doubt and nerves and we were like, oh hes go going to miss! Now we are facing Argentina in the semi final. I think of the 3 left, Argentina is the most desirable one to play for us. Brazil were pretty good their last game and the Germans.. well are German. Always cool calm and collected and ready for the kill. Although they still seem to have a weaker team now than in the past tournaments. Argentina played decent today but still far from good. The Belgians seemed so blocked and nervous in the beginning, and then to play behind the facts and against a defensive Argentina, not easy... But Argentina most likely will attack more than Costa Rica, giving us more space to score. Playing against such an ultra defensive team as CR is usually toughest for the Dutch so fingers crossed Robben is a machine this tournament! Van Persie was pretty unfortunate, so many times off side (and some times poor decisions from the line guy), couple of clear chances missed.. Hahaha Krul the keeper, the way he made that mafioso sign with his finger under his eye; I saw you, I keep my eye on you. And the aggressive pacing; given Hollands poor penalty record, I am glad he did that. Costa Rica coming back int he extra time and holland losing the momentum. I think they had their first proper chance in extra time but they hoped for the knock out in the last time I felt just closing all the frontiers throughout the game, not letting holland score or pass and then finishing it in extra time or with shoot outs that was our worst nightmare scenario so I hope that Argentina will play actually, and go forward and that it will also be a more attractive game to watch. wow my 4 favorite teams in the final. I hope it will be an all European final.
Why this Dutch team won't suffer the same cruel fate as its predecessors
Supporting the Dutch in an international tournament is like going on the most horrifying roller coaster of your life. It's full of anticipation, new heights and an inevitable free fall. As the ride ends, you feel nauseous, exhausted and completely spent. Your ears are ringing, and there's a specific type of numbness that's somehow able to reverberate through your entire body. It informs you that whatever positives were gained through this experience, it was simply not worth the taste of your heart in the back of your throat.Then, you take two steps away, and the only thing your body can think to do is line up once again for the very same ride. While fans of almost every single nation feel as though the experience supporting their side is the most traumatic — your tears are no good here, Brazilians — there's some objective evidence behind Dutch claims that they're the most worthy of pity. This is their tenth World Cup. They've never won. This, in and of itself, shouldn't elicit compassion. Only eight nations have won a World Cup, and FIFA recognizes 209 national associations. The odds are against everybody, and that's what makes the event so enthralling. The Dutch World Cup experience is especially miserable because they've come so close, so many times. They've lost in the final in a third of their trips to the tournament. Four of their nine eliminations have come after 90 minutes, either through extra time or penalties. Before Saturday's quarterfinal victory over Costa Rica on penalties, the Dutch had never won a World Cup match that went to extra time. They've lost twice in finals after 90 minutes, and once in the semifinals on penalties. Fate is at its cruelest only when a brief glimpse of the greatest possible outcome is given, then taken away so decisively as to render one incapable of imagining anything other than what could have been. The Dutch have gone through this on three different occasions. For all of the talk in the lead up to this tournament of coach Louis van Gaal doing away with the 4-3-3 that had been such a staple of sides from the Netherlands since totaalvoetbal, he seems to have ditched the formation and adopted every other principle of the famous footballing philosophy. No side has appeared as flexible with its roster or formation as the Dutch, who completed more passes in the first 20 minutes against Costa Rica than they did during the entirety of their match against Chile in the Group Stage. They've constantly utilized players out of their normal position, and used the same player to fill multiple positions over the course of a match. They've shifted formation, not only match-to-match, but between attacking and defending within the same contest in the same game state. It's all added up to offer supporters a version of sweet torture, playing their opponents rather than playing a match. It's also offered advancement. There's perhaps no better example of the Dutch positional flexibility than Dirk Kuyt, who played right wing-back, right midfielder and left wing on Saturday. During the Round of 16 match against Mexico, Kuyt started at left wing-back, moved to right wing-back, then pushed up to a right forward before moving to take a more central forward role, only to finish the match as a right back after the Netherlands went ahead. We've also seen the forward attackers fulfill multiple roles, most notably Arjen Robben's transition from roving striker up front to a straight out right winger late in matches. Daley Blind has played as a left wing-back and a central midfielder, while Bruno Martins Indi has moved seamlessly between centreback and fullback depending on where players are in front of him.
There's a sense that this is all the result of a mad scientist, and it's not far off from reality. Once again, we saw van Gaal's willingness to go against tradition by substituting starting goalkeeper Jasper Cillessen for Tim Krul with seconds remaining in extra time on Saturday. While the Newcastle 'keeper was championed as the penalty kick expert, his results against shots from the spot would suggest anything else. More important than a nickname, Krul wasn't Cillessen. Any preparation Costa Rica might have undertaken ahead for penalties was immediately rendered moot. Then, to make matters worse for Los Ticos, Krul was at his brashest before each kick. He strutted around, talked to those about to take the shot, and most importantly, dove the right way against every taker, stopping two. What does it all mean? This Dutch team — even as it calls on the ideals of its past — isn't like the ones that came before. It's free from the shackles of an overarching philosophy, free from the indoctrinating past. It uses every squad member based on their own capabilities. If that's run 12 kilometers up and down the flanks in stifling heat, they're in the lineup. If that's utilizing the elements of surprise and intimidation, they're a last minute substitute. And if that's an ability to play left back and central defensive midfielder, then they're going to be called upon to do both. They're capable of playing counter football against attacking opponents, or playing a possession based game against sides that are more prone to sitting back. They're employing the freest form of football the Dutch have ever played, forcing themselves to take their fate in their own hands. More specifically, to Dutch fans on Saturday who have suffered through the cruelest that the World Cup has to offer, it means they don't lose in extra time or penalties anymore. And that's all the reason needed to hop aboard this roller coaster ride one more time.
9th of July 2014
This is an example of 'Dutch humor', probably very different from other countries' humor, but its playing now since our King is Dutch and his Queen is originally from Argentina. So they will be fighting tonight who has to win with soccer (semi final is tonight between Argentina and Holland) :) :) So yes, she is Argentinian and she laughs like a horse often, very typical. He is stiff upper lip, from decent background, rather dull. So there is this comedian, he is like Banksy the artist, you hardly ever see him but he does a very popular skit on the pair of them. Its very funny to us here, as the king, Willem Alexander (his real name and his official name), is portrayed like a very 'toonish', very low life kind of chap here. You have rough accents and workers types in both Rotterdam and Den Hague, with Den Hague being the most split up city int he country; both the super rich plus the ultra low life living there in close proximity and they both have very different and distinct accents. Willem here has the low life accent and it's an accent most people love as it is quite humorous and relaxed and associated with people who love to party, take drugs, love fast food and Chinese food (loempia's), do crime and the likes. Prefer the hardcore type of dance music. So the first video is the first official interview they gave when he became king, and it set this comedian off to make parodies of all the public outings stuff of them. Some are in English, the others I'll translate it. Maybe it is a bit our version of the British Spitting Image :) In the first video he talks seriously about his upcoming kingship, but here instead of being referred to King Willem Alexander, the alter ego wants to be called Willy instead. So to be clear; he really talks posh, but the comedian altered the footage, put his own voice under it all (he uses his voice for all the voices in the clips) and alters also what he says :)
-(background mumble) "strange idea, sort of"
-Interviewer: "You have announced that you'll become King Willem Alexander. Why will it be Willem Alexander, and not King Willem the 4th?"
-"Most important is to stay authentic. Be yourself. Yeh, I'm not a number. Willem 4, that's not a name right? Rick 3 (name of the interviewer), that's crap as well right? Or not then? Nah, cut the crap, it's all crap right! I mean, I'm just Willem right? Call me my own name. I'm no Turk!"
-Maxima: "he is craaazy! It's just a joke ok."
-King: "No without silliness... Are you lurking at me? (as in flirting)" .. "Doesn't matter"
-Maxima: "It's just a joke"
Official royal song: "I'm no protocol fascist. People have to refer to me as Willy. Because with that name I can be at ease. Call me with my own name.
I might be a king, be a king, and be locked up with my wife in my own house
But that name belongs to me. So call me by my own name.
It's better to make sure that you stay authentic. That you stay crazy. That you also stay your own king. So call me by my own name. My name is Willy, say Willy (Maxima acting crazy "Oh everybody calls him willy you know").
My name is Willy, say Willy. So call me by my own name.
I am no number! Willem 4. Yeah, next to Bertha 38 (a cows name in Holland including infinite numbers of them). I'm not standing in the meadow or anything. No I am Willy. (Max "Oh king or prince, it doesn't matter. It's more what we represent"). And on repeat.
"Dear People. I made this video message to thank you all for the best day of my life. It all started already great, with an elongated volvo to one of the best Chinese restaurants. After some shots there was also some room for silliness, with my mother and my girlfriend. For all the important guests, we hired special Conexxian busses (known as the shittiest and least reliable company int he country, Nat). And when everybody was here we sang the opening tune. Then the time was there: the oath. ("I solemnly promise to be a guilty king". "Uhm, sorry, Minister Kleinsma needs to go to the loo"). Jetta Kleinsma had to go to the loo during the oath. After the oath we had to go on canal boats to see performances.
("Oh please, it's been enough with all this silliness, I want to get off now! Hup hup hup, get off"). Afterwards we could go backstage with Armin van Buren. And in the end I could dj my very own song. It was an outrageous day, much thanks to everyone."
"This weekend we had a big party, to thank my mum for the good years. The press and NOS (our version of BBC, nat) hired the Ahoy for this, with all sorts of artists and performers for my mom. But the best part was that me and Max had played a trick on my mum. So as a joke we flew in a grindcore band from Canada.
And of course my mum thought it was just part of the act. Max and I almost died in our chairs. ("Mum! You do have to sing along, you know. Otherwise people think you do not like it" "How then?" "Oh, just sing along!"). And yes, at some point she just starts to scream along. Max and I almost pissed ourselves. She let totally lose. But in the end she could laugh about it herself too. And the last joke came from Hans, to have Erika Terpstra jump fro the stage in the audience (a hugely fat previous minister of sports we have). But nobody could really laugh about that one."
Putin: "Do you want to drink something or what? I've got a bottle of vodka. Brew it myself from sugar cane. Take it! "
Willy: "Uhm, that is for this moment..."
Putin: "Take it! It won't do harm" "It is very rude to decline, don't you think?
Come on, drink"
"Was that so hard?" "Was there anything else you wanted to talk about?" ......
"Yeh that's what I already thought".
Willy: "So. So rascal!"
Max: "Hello, look at that, what do we have to do?"
Willy: "Am I getting a hand or what?
Max: "Where is the director?"
Willy: "Yeh, where do we have to go?"
Max: "Oh we need to have breakfast over there"
Willy: "But we just had a sandwich. But lets walk along anyway, right Max?"
"So, look at that welcome. Craziness. But what do you normally eat then? Just bread or something?"
Kid: "Yeh, usually we have to"
Willy: "Bleeeh. No I don't like that. I prefer tasty things. Sausage rolls, just whatever I want."
Interviewer: "What did he say?"
Kid (regional famers accent): "He said that he got everything he wanted.
And also that he spits on his children and his dog. And also that he sometimes takes a l-l-line of speed (stutters there)."
Interviewer: "A line of speed??"
Kid: Uh, yeah"
Interviewer: "Didn't you find that a bit strange?"
Kid: "Well, it wasn't too bad actually. I've seen crazier things".
"We go back the April 30th. A day, an historical day.."
"t-t-that s muy imprussion fom the celebatiun day. I think"
"Ok, something different.. You start your kingship during an economical crisis. What does that mean for your position"
".."
"Uhm, do you mean to say with that, that you want to modernize the monarchy?"
".."
"Different topic. Do you ever have doubt?"
" uhm.."
"Different topic. Your mother, she ruled for 33 years, did she give you one important piece of advice perhaps?"
"uhm... Stay yourself.... and the king .... then you can uh... keep up for a long time"
22nd of June 2014
My skin has been really good until tonight, when I had to get rid of the layers of dead skin build up and it went from very pale'ish to red again, am flushing for hours now. I know it will take a day or 3 to calm down now and recover, but I enjoyed the paler skin heaps and heaps. Tonight I went to a jazz evening in a garden, very excellent, enjoyed it so much. The band played New Orleans style Jazz. Even danced a few times, Charleston style :) I wore that dress in the first pic :) Very very enjoyable, an older Scottish friend invited us. I need to get out more often, seriously, all I do is sit inside and have me evening walk, the rest, just being antisocial I guess :) These are just shot from tonight, bit unflattering light and my face and cheeks are puffy in the later two. I realize my face does look different on all sorts of days, depending on how much I flushed and all that, wished it was the same looking every morning, as i t was in the past. In the 2 half face ones my cheeks are less puffy, it tends to swell a bit in the evening.
Interesting blog on depression:
17th of September 2014
I had my last wisdom tooth removed yesterday, what an ordeal. Nice young Belgian doctor and I told him that the last time I needed more than 12 anesthetic injections and he thought it would be different now, but turned out the same way. Showed the X ray and it was a very tough wisdom tooth, completely breached and with difficult roots intertwined with an important nerve, so he said he would remove the top of the tooth first and then decide if it was safe enough to get the root out. Luckily that all went well and they had a whole team called in to see how you remove such a hooked tooth, but after 5 injections he started drilling the tooth off and it still hurt badly, so needed another 7. Tough to get the hooked thing out and they needed to drill quite a bit off my jawbone. Yesterday rosacea was fine, I think from the immense amount of adrenaline they put in the anesthetics, to keep it longer in the nerves and have the blood vessels constrict, but today, massive inferno and my jaw feels so painful. I can't sleep from it.. had four 600 mg ibuprofen but they burn my stomach so take nothing now. Feel so smashed up. Asked for antibiotics as I always get infections but this is Holland and that means extreme conservatism with medication, so I didnt get any. Hope it wont get infected as the other did in february but will keep an eye on them. Look like a red chipmunk. Yesterday my rosacea was calm all day despite the procedure, but today rosacea is bad. It's always good on the day itself, maybe because they put so much adrenaline in those jabs and they are strong vasoconstrictors, to keep the anesthetic longer in the nerves. But today its pretty red and sore and my mouth feels like its butchered, reallly sore today. Thought it would be better instead of worse. Feel like shit.20th of September 2014
21st of September 2014
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Eveleen Myers1856 - 1937
Eveleen Myers, née Tennant, was born in London in 1856, the youngest of three daughters to Charles Tennant, M.P. and Gertrude Barbara Rich Collier. Eveleen Myers married the writer Frederick William Henry Myers (1843 - 1901) in 1880. Contemporary reports suggest that Eveleen Myers took up photography in 1888 with a view to taking portraits of her children. Myers may also have been influenced by her childhood experience of being photographed by Julia Margaret Cameron during a visit to the Isle of Wight.In addition to both formal and informal photographs of her children and topographical photographs of her residence, Leckhampton House, Myers rapidly established a considerable reputation as a portrait photographer. In 1889 she produced a series of portraits of Robert Browning with images of Gladstone, Chamberlain, Balfour and Galton the following year.
Leo became a writer and later took his life; http://en.wikipedia.org/wiki/Leo_Myers
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Adelaide Passingham, early 1890s
Arthur Woollgar Verrall, 1890s
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Dorothy (nee Tennant), Lady Stanley, 1890
Frederic William Henry Myers; Leopold Hamilton Myers, 1890
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| Silvia Constance Myers; Frederic William Henry Myers; Harold Hawthorn Myers, mid 1890s |
27th of September 2014
The wisdom tooth removal all in all was bearable and went ok. No infections, but the tricky nerve did get hit and the right lower side of my chin and lip are still numb, with some tingly annoying sensations. Numbness can take 6 months to resolve, lets hope that will happen. I've been meeting some new people on a penpal site and it has been a good laugh for me, writing about history and music and general thoughts on life, but I wanted to keep the happy vibe and not complaint about my health issues. I notice I have a soft spot for geeky personalities with a flair for those topics and a similar sense of humor and a light hearted wit. After some months, it does feel as if you are friends with some of them, although I keep in mind that it could all be a temporary thing; with real life friends you meet in person and there is a natural sense of loyalty and with fictitious people you hope for that, but you never know.
My trial with
mastocytosis medication
mastocytosis medication
I received the medication, or part of it. I have both the Inorial/bilastine here and the Pantoprazole. The zaditine will arrive on Monday. I already started with the 2 meds I have here now and just added them to the Xyzal. I usually wash the colored coating off medication as I'm afraid the yellow and orange chemical dyes they use for many sets me off (E-numbers etc), but with the Pantoprazole that was impossible, as it is a stomach resistant type of coating (like the NSAID anti inflammatory medication have as well). So in fear of burning my esophagus or something I leave it on. I took it ll before bedtime and now woke up very nauseous. I'm not flushed and my skin is rather cool to the touch but a bit rosy colored nevertheless. I took some pictures last night, when we went to a small band with a group of friends. The natural eye make up gives me no problem when I put it on and take it off the same day. Once I leave it on for days and nights on end, it gives me acne/p&p's. The ones in the last picture of the make up thread subsided within a few days of not wearing the make up anymore, all by itself. I will keep using these new medications and add the Zaditine from Monday onwards and keep you updated on it. Not feeling like eating and more like puking today :)
I have been taking all 3 prescribed medications for the past days and I do wake up pretty pale. I think overall my skin is calmer, but the weather is hot, humid and I help out with a group of mentally handicapped people, as far as I can help. I notice that when I do strenuous stuff, like just yet cleaning for an hour, I turn still mighty flushed and red. Same on Monday when I had to go into town to get the zaditine and I had to walk in a very hot, sunny place for an hour. I notice that I sweat more since using these medications, although that might be a coincidence. It feels more like hot flashes than flushing now, with sweat breaking out everywhere, but a bright burning hot throbbing face on top. Awesome.. The flushes do calm down again once I have the aircon and fan pointed at it and I also made smoothies with ice cream instead of the rosacea friendly rice milk today, so I will stop eating bad foods and give these meds a real proper try. Here are 2 pics on a cool morning (yesterday) and 2 of today, taken just yet after an hour of cleaning (sorryz for the miserable looks). I have to add that yesterday afternoon I did my hair again and painted the hair roots with 3% hydrogen peroxide and baking soda.. I didn't get flushed during nor after but who knows, it might have something to do with the easy flaring today. Not sure how red the pictures turned up, I think I look more red when I look in the mirror but my skin gets swollen so quickly, my eyes and nose too even. In fact, it seems like everything swells up, even lips. Hate it! I have one blood shot eye (my right one) to finish the loveliness of the picture off :(
Update August 8th, 2013
Still taking all meds (needless to say) and skin is more calm than normal. Woke up pale despite it being well over 23 degrees in the bedroom. Been working and cleaning and skin is calm. One eye is blood shot and hurts, a lot of broken blood vessels in it, but unsure if it is related to the new medication (it started 2 days ago though). I notice very dry eyes, but that's not a real surprise given that I take now what, like 3 different antihistamines? They are drying. I have eye gel to keep them lubricated. Happy with a calmer skin. My symptoms are usually redness, flushing and swelling, I rarely get p&p's (except like with the make up or other triggers). I also have been using the eye make up I bought and am using it now on some days, and make sure I get the whole shebang off again at night. No more outbreaks. I guess the make up by itself is well tolerated by my body, but it starts irritating my skin/system (?) after a few days of use without removing it at night. I still use it only when I go somewhere worth putting it all up and not all day all week. Update August 9th, 2013
Buggers, looks like I have conjunctivitis on the right eye.. Its been red now for 5 days and feels very gritty, painful, burning and irritated. The redness is not going down either and I wake up with some crusting of the eye lids (sorry for gory details). It´s Friday so I guess I better sit at the doctor´s for 2 hours (walk in consultations in the afternoon), before the weekend. I looked it up, it looks like conjunctivitis and it can -I think at least- perhaps come from the new medication (dry eyes) or the make up that I left on my eyes for way too long last week. Always something, sigh. Just seen my doctor (GP), its indeed conjunctivitis and he saw it starting in the left eye as well. Received a prescription for an eye wash and for antibiotic drops called Rifamycine (for 8 days). I asked if he thought it likely that either the new medication (showed it to him) or the mascara/eye liner could have caused this and he said about the antihistamines that they are very widely used and prescribed and well tolerated and that he didn´t suspect them, but either the make up (bacterial or allergic reaction), or just a coincidence and it happening all by itself. Glad I got some drops now and hope its back in check soon. Here someone wrote that eye make up can actually cause conjunctivitis and that its better to get rid of these two items I have now as they might be contaminated with the bacteria :/ Too bad but we´ll see. And I think I will have to keep some of these drops and store them for my Halloween birthday (this is no photoshop lol). Zombie or alcoholic with liver cirrhosis, I'm still torn between these two. The dye in the drops dissolve in about half an hour but they need to be reapplied 3 times a day. I'm also flushed and burning again now, my system doesn't like antibiotics :( These eye drops give the most disgusting taste in your mouth. Tried chocolate mouse, yogurt and fruits to get rid of it, but nope, it keeps coming back. Like you have a lot of rusting metal at the back of your tongue. very nasty. It seems that happens often with eye drop use.
Update August 10th, 2013
The eye redness is already decreasing but it still burns. Unfortunately the antibiotics drop make me flushed a lot. After a night sleep my skin was reasonably calm again today but as soon as I use the eye drops redness and burning comes back in full force. Argggh, hate antibiotics in that respect, still 7 days of use to go :( Just when my skin was so calm.Update August 12th, 2013
The antibiotic eye drops now make me flushed for about 2 hours after administering it (3 times a day), but then it settles again to how I was before getting the eye infection. I then look pretty pale. I expect to have a more steady pale skin once I am done with the drops. My eyes look almost fine again so it's tempting to ditch the antibiotic bottle altogether but I will finish the course dutifully. I will keep taking my mastocytosis medication and think they help, but will be able to determine it more precisely after Friday, which is the last day of the drops. I still have no flushing or burning when waking up. Here are some more pictures of mastocytosis patients who flush. There is one very interesting blog from a woman who seems to flush quite fiercely and who so far thinks it is part of her mastocytosis. Her blog got deleted recently, but she also described the sensation of her flushing, which is interesting to read. She writes for instance: "I will swallow my vanity and show you two ghastly looking photos of a recent MCAD flushing episode. I was actually even redder in person…the camera actually toned down the redness somewhat. I did not adjust the images in any way. The pictured episode was triggered by activity and allergens. It lasted about six or seven hours. MCAD (Mast Cell Activation Disease) flushing feels rather like a combination of sunburn and windburn, a sort of stinging sensation. I can feel a flushing episode before it becomes visible and also for a little while after it visibly fades. An episode can last a half hour or so for a very mild one to several days for a major one. During bad episodes, the reddened area is slightly swollen/raised."
Btw, I watched a good movie last night, Syostre (Sisters, 2001). A Russian movie about the new Russian Mafia and two sisters having to hide. Pretty good and loved the music in it. Lots of songs from Viktor Tsoi, a cult figure who died in a car accident and from a good group called Agata Kristi. I don't speak Russian but it always sounds quite cool and dark and grim to me, poetic in some way and the music in the film was great. Very 80's and Tsoi sounds almost like a Russian version of Joy Division in some songs. Gotto love that. Helping friend Jojo, game playing including old Dutch 'cake biting', where cake is put on a string and someone is blindfolded, spun around for some time and with the hands on the back they have to find and eat the cake, depending on directions from the group, and egg (or in our case potato) walking.
Update August 13th, 2013
I took a picture this morning, when my skin was pale, and will compare it to one taken about 6 months ago. Then I had a flare, admittingly, and despite the new medication I can still flare and get very red, but I like how the base redness seems to be cut back a bit due to all those antihistamines and mast cell stabilizers.
Update August 20, 2013
After 8 days of oral antibiotics, my skin wasn´t too bad. I still think I was less flushed and red than normal, but still very capable of flushing and burning. Tonight (already 5 days after discontinuing the antibiotics) I am old fashioned flushed again; red, burning and back on the cold packs. Was ok´ish today though and I laughed very loudly during dinner from watching a series of clips about Jason Leech from The Apprentice UK (not good for flushing, it triggered it pretty badly for me, plus the heat here and eating crap food today). Feels horrid to be back to the full face burning but lets hope it stays limited to tonight. I received a very nice post (see below) from someone suggesting me to take the pantoprazole in the mornings, as it will work better when food is added. Let´s hope this flushing has got nothing to do with this change of schedule. For some Jason tv (he is the biggest gentleman in the show, very polite, doesn´t like to lie in business, good sense of humor, Jason for president!) see:
Update August 22, 2013Have been flushing all night and woke up today flushed. Grrrr. I am not sure why the very calm skin changed. Am still on the mastocytosis medication, but can think of other little changes of habit, in temperatures and humidity outside and so on that could in theory be behind it. Will keep using it and hope the flares calm down again. Having a whole day of traveling ahead of me, buggers..
Update August 24, 2013
I was a lot paler the first weeks on the masto meds but then last week I got very red, lots of paps en red inflamed patches and flushing. The problem is that I wasn't sure if this resulted from the medication or from something else. I started using a hair mousse last week, to firm your hair as I wanted curls and it has perfume and chemicals in it. It never touched my face, but back in the days I managed to break out in bad acne from nail polish, so I am weary now. So I traveled this week and was a tomatoe last Thursday and I since stopped the meds. I wasn't just red but had these big inflamed bumps under the skin, people actually looked at my face with a worried look, something I usually don't have unless I'm very red indeed. My usual procedure is to stop anything that I recently started with in such a situation, let the skin calm down and then try the medication again. I always do that double test just to eliminate other potential triggers. NO MORE HAIR PRODUCTS lol and no make up either apart from my charcoal black lines. I think it might have been the smoothies I had daily last weeks (I tend to react to too much vitamin C) and the hair product, but I am having such a busy schedule this week socially that I start the meds again next Thursday. One week on just my old meds therefore (clonidine, propranolol, mirtazapine and xyzal). The skin is significantly calmer now but like I said, I also stopped using the hair product and the eye make up and the smoothies. We will take my dada on a week long holiday next Thursday. Flushed tonight, not sure how red it looks in the pictures but it was more red when I looked in the mirror. These type of flushes/redness shades make my face feel really hot and throbbing and give a lot of burning and heat sensations. I cooled it down with a fan and cold packs, wrapped up in a cloth and it subsided again in an hour or 2. The next morning I slept off the extra redness again.
Update August 26, 2013
I started taking the mastocytosis medication again last night, when my skin was not good (red, flushed, burning) and had a great cool night and woke up pretty pale today. Back on track with the trial!
Update August 27, 2013Update August 31, 2013
Still less red and flushed than normal. I think the new medication is helping to get a big chunk of the edges off the rosacea. I can now eat probiotic yogurt every day without much problems. Eating frozen yogurt too :) I still flush from obvious triggers, like yesterday being at the shore and in the late afternoon sun. But it calms down pretty quickly again as well
Update September 3, 2013
Update September 3rd, 2013
Skin is pretty calm, as long as I avoid the worst triggers. Late afternoon, skin is calm again.These pics were taken during the day, the ones below at the end of the afternoon. The lighting is different but I was pink all day and more pale when back in the house again. In the 3 pictures with the hat and sunnies, it doesn't look too bad, I can get a lot more red, but for some reason even this pinkness is burning. My skin and face feels hot and uncomfortable. I can feel the flush coming on, when the burning and warmth is crawling up. In the first, say 5 years of having rosacea, I didn't feel anything when I was this shade of pink. But nowadays, perhaps because of 14 years of flushing and over sensitive nerve endings in the face, even this mild redness is burning and hurting and throbbing. But, the good part is that the masto medication seems to keep me a bit less red. I still need to use a fan and avoid triggers but there is some improvement. But its no cure for me. Once I leave the fan, am in a hot environment or eat the wrong foods, have an argument to name some examples, the flushing still comes through..Update September 6, 2013
I emailed my dermatologist a medication update: "Dear Dr. T., I have used the 3 medications that you prescribed me (Inorial, Zaditine and pantoprazole) for about 5 weeks now and things are going pretty good. I still flush but not as much and my skin looks less red as well. When I get in the sun or in a hot room or eat certain foods or get upset, I can still burn and get red, but I think it has improved about 30%. My skin looks less red and angry. I add some pictures, first 2 are taken 2 days ago when skin was calm, 3rd one when I was in a hot car that same day (my skin burned but doesn't look as red as normal and it calmed down again quickly) and the last ones are what my skin looked like in the past when it went bad. I hope I can continue to take these 3. I still have to do the blood test... will do that soon and discontinue the medication first for some days. I have almost no side effects, like you predicted, apart from dry eyes. But I have ocular rosacea, so my eyes were already dry and burning. In the winter my rosacea is usually a lot worse so lets hope that this year will be a bit better in winter :) Thanks and I will make another appointment after the 3 month trial period. best wishes"I added some close ups of the pictures I already added up here, and while looking for past pictures I found some more that weren't posted yet, I think. I can still flush and still do so daily but for shorter periods of time, maybe I have a few hours per day now that I feel red and hot compared to half of the day in the past. I still use a very small fan on low and at a decent distance when I work or sleep by the way.
Now vs 2011
Update September 8, 2013
I might have pushed my luck a bit the last 2 days. Ate a full bag of cashew nuts last night and woke up reddish, then didn't pay too much attention to food either today and had a long walk and was in a warm kitchen, and feeling pretty hot in the face and flushed again :( Was red and burning in the morning, then things calmed down again in the afternoon (outer 2 pics are cut up, cheeks looked more red than is visible, but pics were taken in cool light which seems to dim the color a lot, then red tonight, although again it looks a lot worse in the mirror than on the pc screen). Will go back to strict order and discipline again tomorrow, lets hope it calms down again, soon.
Update September 11, 2013
Skin has not been good the past two days. I blame it on making long walks in relatively warm and humid weather, eating too much yoghurt ice cream (but defending that by only eating that for the past days and comparing it with a liquids only kind of detox tour) and yesterday evening I noticed the yellow build up of dead skin, like pictures in the seb derm post. So I gently removed it with cotton pads and bottled water, but the lose flakes act like a scrub nevertheless, making he underlying skin very red and burning and tight feeling. I hate how my cheeks swell up from the flushing, they literally seem filled with air in these pictures. Flushing less and being more pale seems to really deflate and flatten them.. One good friend now calls me his dear chipmunk :'( (although he picked that name from me mentioning it first, but nevertheless. Gosh we loved watching the Chipmunks as kids and with 3 sisters always battled who could 'be' who in the series, everyone wanting to be the cool red one, but my middle sister always ending up being the blue one with the glasses haha). Flushed most of the night and woke up red, but after cooling with a cold pack and a fan, it calmed down by noon and skin looks kind of pale again at the moment (fingers crossed). But despite mastocytosis meds (and still not knowing if I even have mastocytosis... still need to get it tested) I can defo still get very flushed and sore. It made me so crabby and miserable the past days, but in a way it might be good to be reminded of this underlying rosacea beast, as its probably here to stay. And I had also gotten slightly used to the flush less awakenings each morning. See the difference in cheek puffiness between these pics! Only one a half week in between..
Update September 22, 2013
My skin has been pretty flushed and red the past week. I have no clue why. Have been taking the mastocytosis meds faithfully but I am started to doubt that they are the big improvement I initially thought they were. Either they worked great the first month and now work less good, or they used to work good and I have done something (diet/stress/who knows) to counteract their action. I have been eating healthy but still eat yogurt. Perhaps I handled the yogurt well the first months and now have developed a problem with it? I will go back to the old, proven diet of organic meat, vegetables, salad and some fruits and see if my skin clears up. It's mainly waking up with red burning cheeks again, and having them most of the day. Its very depressing and tiring, I feel locked in the house again and my mood is dreadful because of the bad burning. Wishes I was pale still and could finally say: these are the medications you all need to start taking. But so far I am undecided still. Will live über healthy for a week or two and see how my skin reacts. If no chance, I will stop the masto medication for some weeks and see how my skin color and burning respond to that. This is all so tiring and demotivating. 
30th September 2013I stopped taking the 3 mastocytosis medications last week for 4 days, but found that the flushing and redness only became worse. Started all 3 again (on top of my regular medication) and my skin was pretty calm since. Until yesterday. Have been feeling flu like for the past week, with a sore throat and nausea, but it just lingered on a bit and didn't impact my flushing. Then the past 2 days its been pretty bad, with bad stomach pains and bad nausea and not being able to keep any food in. Face is pretty red and flushed on the right cheek all day today. Here are some pics of before that flu flare.
Update October 7, 2013
My skin is a nightmare at the moment. I am starting to suspect the mastocytosis medication are the culprit. Its very weird, I feel more flushed and my skin feels more burning and tight, but it looks not too red like 70% of the time. The other 30% I'm really flushed, mainly in mornings and evenings. I think the stuff might make my skin too dry perhaps, hence the tight burning feeling.. I don't know. Stopped taking it a few days and skin was bad, started taking it again and skin was good for 2 days and then back to very bad again. All I know is that before I started taking this stuff, I think I felt less hot and flushed and tight in my face. I had many days where I felt flushed and hot and looked in the mirror and looked only slight pink or even palish. Very werid indeed. Because of that, I have kept using the masto meds, because looking not too red is good, right? But it starts to feel very odd. My skin is not predictable like it used to be. I now flush at other times than before, I am even getting ear flushings the past week and its terrible, although not as bad as full face flushing, but when my ears starts glowing I know its only a matter of time before the rest starts burning too. I skin feels worse than it looks and sometimes looks worse than during a normal flush, I think.. Not sure. I should have made one picture every day for the past 3 months, one in the morning at a fixed time and one in the early evening. That seems the only way to sort of objectively evaluate the effects of it. I'll stop the inorial, pantoprazole and zaditine for a week or two now, and see how that goes. I'm afraid that all those antihistamines might dry my already dry skin out even more. Or that it creates more histamine receptors somehow in my body/skin and makes me more prone to flushing when stopping the meds even?
Had a busy week with social things to do and it has been tough. I'm stressed out about all sorts of work I'm running behind with, got wrapped up in some forum about a tv program called The Mole and spent too much time debating a mole suspect (yeah, for real...) and analyzing shows. Was with friends all day today and flushed all day. The good part of it all, is that they say I look so much less red and swollen now than say 8 years ago. But I feel like I am very badly flushed and I didn't have that before taking this stuff, only when really flushed. Trying to ignore it and bringing my cold packs with me to my sisters place and my friends places. Managed to have a good time with them anyway and with their nice kids, who really don't give a rats about the color of your face seemingly. I also ate very healthy the past months, and especially the past week. Had a massive bout of flu the week before and didn't eat much at all then, and the past week only vegetables and some organic meat and fruits in the evening. And guess what, I think my skin looks worse. Bought some fries and Bounty icec ream tonight, heck I was red already and I feel unflushed and more pale now, 2 hours after. This makes no sense.. Will go back to the old meds; clonidine (0,75 3 times a day), propranolol (40 mg a day), Xyzal (10 mg a day and Mirtazapine; I am feeling so good on 30 mg, upbeat, cheerful, but I am more red and flushed for sure. Tried it several times and always have the same effect. At 15 mg my skin is best but that dose does absolutely nothing for my mood. At 22,5 I feel pretty ok, nothing too great but decent, but seemingly more red than at 15 mg. Gosh we can't win, can we?(Rant over :) )
Update October 15, 2013
I stopped the mastocytosis medication around 6 days ago and my skin seems to get a bit more calm I think.. Less tightness and burning sensations, although the past week was a bad one, skin wise, nevertheless. Pictures are from the past week (3x, red, hot), and this morning (the light picture, calmed down+ obviously not (never) wearing make up and with natural light). As most people with rosacea might know, the way it feels and looks in real life (hence, very red and burned up) isn´t always reflected entirely in the pictures, but I was on fire here. Had to travel a lot in public transport the past weeks as I lost my drivers license and the indoor heat made my rosacea so much worse :( Spent a lot of time behind a fan with cold packs. Today skin is calmer; the last pic was early morning and by now the pinkness/redness has been crawling back up, but its not as red as the past week, thank god. I think the masto meds might have worked well and then made things a bit worse, to be honest. I blame that on the dryness they caused (don't forget, I already took a double dose of Xyzal antihistamine and then these 3 on top, ánd the remeron has anti histamine effects as well). Have been using jojoba oil, diluted with water, on my face, with exception of the inner cheeks (too sensitive for anything, I spare them). I think it has helped a bit as well. My skin looks and feels less painfully dry at least since stopping the masto meds. Am a bit disappointed however, that the high expectations and good initial results didn´t seem to continue. It´s so difficult to be certain the worsening was from those medication,as it went well in the beginning and because there are soooo many variables and so many potential triggers that could have caused this, instead of those medication. But I stopped and restarted now a couple of times and I keep having the nagging intuition feeling that I am doing worse the past months when I take the meds... So will stay away from them for a few more weeks and then re evaluate.
Update October 27, 2013
I have been off the mastocytosis medicaton for the past weeks and my skin is a lot more calm now than the last week or two on the meds. Very little flushing and I can make long walks in the evenings again without flaring too much, so I think the mastomeds experiment failed for me personally. I do think they can help other rosacea patients in theory. The antihistamine Xyzal helps me a lot and I have been taking it for the past 7 years, but I suspects that adding too many different antihistamines on top of each other and to the mix, might affect our skin in a negative way, making it more dry and therefore prone to flushing. So I stick to my current meds:
*clonidine: 0,075 mg (75 mcg), taken 3 times a day, every 8 hours
*propranolol 40 mg, once a day
*Xyzal, 10 mg once a day
*mirtazapine, 22,5 mg once a day (at night)
I wished I could up the mirtazapine to 30 or even upwards, as I have been feeling low and struggled with some depression again lately and it takes so much energy to keep going and stay positive and active some times, but as soon as I up the mirtazapine to 30 I get worse flushing again. So I stick to 22,5 mg and try to exercise myself to happiness :)
December 25, 2013
I finally got tested for Tryptase and was very low, well within the normal range. My levels were 1,8 μg/l, while the normal range goes up to 11,4 μg/l and mastocytosis patients tend to have 67 μg/l according to PubMed. I also started using zaditen and inorial (1 instead of 2 pills this time per day) again the past week and feel it helps me to stay more pale. I think the pantoprazole made my rosacea worse, not these 2 meds I continued using again. I was asked: `Have you ever had testing for allergy, mastocytosis, histamine intolerance, and mast cell activation syndrome?` Apart from being tested (negative) on tryptase, I have been tested on IgG and IgE allergy levels in a blood test, also negative. Based on that there so far seems no need for extra testing but I do have elevated ANA levels (not related to allergy or histamine though). See derm in 2 weeks so will ask how its possible to have a negative tryptase test result but still see improvement in flushing redness and rosacea on these antihistamines. The rosacea is still there by the way, just looking a lot less bad and I don't have the constant flushing issue now.
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no more lasers! that is what the docs are saying sansrosa or mirvaso is here! not an antibiotic!
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