29 July, 2015

Faces of winter



It hasn't been the greatest month. Winter always has its own 
challenges for skin patients, but the antimalarial trial I did didn't help matters either.I have tried to keep the social pace up in January, after a month of mainly working and before another upcoming month (or two) of more social recluse, working inside behind the pc and hiding from the rest of the winter.. So here's a compressed short view of the month of January. First some pictures of what my skin can look like during winter.



 





Winter the past 3 years







 




The cold gives me hives! (urticaria)





Summer/spring the past 3 years



 







And back to winter again:


 

 





Seb derm flares (the red rashes around the folds of the nose and mouth and along the T-zone)








General winter update:


Meaning of life
I have been wondering what to do 'next', rosacea wise. The mepacrine is not meant for me, that much is clear now. It seems to really help some other rosacea people, including a good friend with the same sort of facial flushing and redness, but so far it has only made mine explode. Twice now, same pattern and symptoms post pill takings, I call it quits with mepacrine. Plaquenil is a tough story; I do feel I am doing ok on it, maybe even paler and less flushed. But it makes my eyes burn terribly. And it also gives me p&p's every time I try it. Plus.. after a couple of good weeks, it seems to make me worse then suddenly. Saw this happening during several trial periods now, and perhaps I just have to push through in that case and give it the 3 months it seems to require to properly build up in the body's plasma levels. The eye burning is way worse than the outbreaks thought, and I tried and used every eye lubrication aid I could find to not much avail. Can't live with eyes thát painful. Not to whine here, but have been lying with eyes closed for good parts of the day at some point. Like the surface was sand streamed or something. Not really worth it in the end, for me at least. It's a shame that this ruined my starting love affair with plaquenil. But I tried it 3 different times now and the same thing happens every single one of them. After stopping the plaquenil I have the feeling I have kind of a rebound flare episode. This time I stopped it somewhere around New Year's Day and I had an ugly red swollen face for 2 weeks.
I have done some searching on herbal anti inflammatory supplements and once my skin is calm again I will start trying some of them. No point in doing that when I am still bad, as it will most likely influence any objective outcome of the trial. And don't feel like not trying new things either. Had ok'ish periods and days where I was flushed constantly. Tried to keep the indoor temperature stable around 16 degrees and when the air was really dry (almost every day), from the easten winds, I humidified the indoor air by running the shower a long time or boiling water. Helps to not make my skin even dryer.

So, the past month..


I had a family day in a theme/roller coaster park, I mentioned it already in the last post. Had been red and flushed for a few days on end by then, and didn't look forward to the trip at all. Little sleep that night as I had to drive about 300 km in the morning. Temperatures were consistently arctic with a pleasant 50 knot windstream.I didn't have to worry at least about getting overheated :) But in all honesty, it turned out a lot more fun than I had anticipated. I wasn't feeling too glamorous (when did I feel that anyway the past 6 years), but had 2 scarves to hide behind. We saw family members who I normally see once a year and there were plenty of boisterous nieces in the teenage years (and the odd boisterous adult) who also wanted to rush through the fairy tale park (nice for granddad though so we stuck with the group). But soon after seeing all the old German/north European fairytales (snow white, Cinderella, Rapunsel and about 50 others) we rushed to the real attractions, including several roller coasters. The bitter cold was an advantage here and there were greatly reduced waiting times. Highlights were a spinning room (I made a video!), a roller coaster in the dark and the Python, a roller coaster with many loopings. We got all together again for some dinner around 6.30 and the choice of foods ranged from deep fried foods and all possible unhealthy combinations with french fries. I opted for the healthiest choice available, which was a slice of apple and pecan pie (admitted; delicious). What can you expect in a toddler filled place.. The park closed around 8 and we rushed back for a few last rides. The Python was even more fun in the dark, with all the lights shining bright. It honestly felt like -50 degrees all up there. Had to laugh after first making a steady (!) video from an adult male family member sitting next to me in the Python, including him making silly faces and a fool of himself along the way. And when the lady in charge said it had been the last ride of the day, a bunch of adult men -who had been in the last 20 rides on end at least- started objecting, shouting, begging for one more go, "The last one!!!" and she finally gave in under loud applause. I think it went even faster than normal and when we 'landed' the adult guys gave more applause and chanting :) Asked them on the way out how many times they had done the ride that day and one estimated it at 50 at least hehe. There was a final water show, where they used water, light and music to make a water ballet. I added some video's of it.



I also met up with my sister. She is my youngest sister, our middle sister died in 2004. She has a young son. I try to see him as often as possible, but have to admit that this isn't often enough perhaps. It's not that I don't want to but we are both busy and not always around in the same city. She has a demanding job at a travel agency and is home late usually and I am not always up for traveling to her place. She and her partner also have a dog and I am allergic. This time we met up in a café, where her son could play in a special play corner and we could chat. He is cute and seems to love his aunty :) The past month it was tough to see him as he had the flu for a while and recently sis got a big scare when she was called from the day care that she had to come and pick him up as he was having respiratory problems. She suffers from asthma and bronchitis herself (not bad now, mainly as a child) and was scared of asthma of course in his case. The doctor said he is too young to be diagnosed with asthma and he has to use special inhalers now. Very stressful apparently, as the mask has to be properly strapped on his face, for him to inhale enough of the substance. A real struggle according to her. We later in the month had an argument, something we usually never have, although she is pretty opinionated and well spoken about it. But usually we try to be nice and understanding with each other and support one another. But there is quite a big age gap between us (relatively) and as kids she and middle sis were very close, almost acting like Siamese twins, not rarely against me, the big sister (troll). Later relations evened out and we got better one-on-one relationships, but in our childhood years there was some banter and rivalry. The sisters liked to sneak into my room and plan revenge attacks, mainly aimed at Barbie dolls of mine. A few of my nicest dolls got an involuntary hair cut (style: Punk) and a make up makeover. They turned out worse than Marilyn Manson usually. We made up eventually. Since my middle sisters death she and I are only sisters and although there was a lot of distance initially, mainly because of the age gap at that young age in our lives, things did get better in the end. She started to understand a bit more why I acted so anti social during flares, that the redness was painful, that I didn't make up the allergy and flushing triggers and the fact that my rosacea progressed visibly also 'helped'. We are close now but very different personalities. She is about practice and I am about academics and theories. She is quite social, I am social in some ways but in other ways.. less so. We like opposite things, movies, music and books but there are of course also a lot of similarities and a lot of shared history as well.
 Below more sisters pictures









 


I met up with a friend and her son to watch a couple of friends jam with their band. They play mainly rock music, for instance the Stones, Rod Steward, Jimmy Hendrix and Eric Clapton. They are pretty good but it's mostly about the fun.
   

We took our best friend to dinner for his birthday. Was fun, even though the other 2 both drink alcohol and I don't. They managed to drink 2 bottles in fact that night, and whisky with their coffee. Ate a Maroccan meal, which I love. I stuck to lambs meat in a honey and dried fruits sauce, from a tajine (special oven dish), delish! My girlfriends and I have been eating this dish for the past 13 years, at least once a year in this same restaurant, and in total I must have eaten it over 40 times there in my life, but it never fails. I did get flushed from it, unfortunately.The meal was maybe too hot (thermally, no spices in it) and the dried fruits contain sulfur among some other things, so I am not eating them usually. But well, this was a celebration. I don't stay home per sé when the rosacea is flaring. If I am flushed constantly I will cancel, but if I can manage it I go out nowadays. This is mainly because I have this from 1999 already, 14 long years. I did the home staying long enough and I find that I can calm down most flushing once I come back home anyway. Meeting friends and doing things I like outweigh things. With these two, we usually discuss my one friends dating and love life (yaay, there are actually guys who like to discuss this!!), his dog, work (or no work) and ins and outs about other people we know from town or the pub circuit.

 
What else.. spent evenings with my dad and friends on the couch, watching the soccer or the news and discussing funny or stupid things, visited friends with 2 daughters and discussed their daughters school problems during the evening. Spent a day in the snow with my school/uni friend and her son, the pictures I took there (a few of them) are posted at the end of my last post (natural anti-inflammatory treatment options). The kid is so bright and so funny and happy :) We usually start playing with his extensive miniature car collection as soon as I come in ("Talja, cars!"). He can pick his 5 favorite ones (out of about 200, the favorites change every single time lol) and we sit across each other with a fair distance between us and race the cars to the other person. He can do that for about 4 hours straight and prefers it mostly when we do it at the same time and some cars collide. The crashes are the best :) So we walked in the snowed park, tried to make a snow man (snow wouldn't stick) and counted the
The secret plans for invasion of the moon from the north side, 1923
ducks. Another evening we ate with her and her partner, who is a fine cook. He is quite outspoken and opinionated, outspoken sometimes which can cause some firework but it is also stimulating and fun to have an evening full of discussion. And he is very sweet about my diet shit and always asks me to send me an updated list of food to use or to avoid. Very attentive. He insists on cooking a rosacea friendly dinner for me. This time he made coquille de saint jacques (Saint Jacob's shell?) in an aniseed sauce, delicious cauliflower soup, salmon with pasta and Sirloin steak with steamed spring vegetables and some potatoes. Way too much food but very sweet how he made such an effort. No pepper or dairy and I smuggled with the pasta :)

Another (BIG) smuggle was the Chinese we ate at some other friends place. They had organized a games night, with a who-done-it board game (the guy is investigator/detective at the local police station hehe). I love board games and this one was quite complicated and a lot of fun. We first played the tower of Pisa game with their son (place as many blue Japanese tourist puppets on the tower without it tumbling over). Everyone wanted Chinese and I had brought my own 'goody bag' with neutral food with me. But I smuggled anyway and had some noodles (gluten!) with some sateh (peanut butter) sauce. Hadn't eaten that for about 10 years. My parents used to order some in over the weekend when I still lived back home. But I don't think I missed much the past decade, it's not my favorite food and the sauce was spicy, they probably used some monosodium glutamate (or MSG) in it too which all set me off quite badly. Flushed but I brought the cold packs again, by now everyone is used to that and isn't bothered with me cooling my face, and we had a nice evening anyway playing the game (even better because I won). Being so rare, I had to take some pictures of the Chinese food lol :)

)



Saw a great Danish movie in the cinema, called Jagten (The Hunt). Mads Mikkelsen already made some great movies (try to see Adam's Apples/ adams æbler if you can for instance) and in this movie he plays a father who is wrongly accused of child abuse. Haunting movie and superb play. I walked through town usually around 5, as I like the buzz of the city at that time. Visited or met up with family, with other friends with kids, and with some artist friends. Some more pics below. Watched the Saybia concert on the 9th and got stuck in quite a few traffic jams (Holland is packed). No full flush pictures this time but will keep the camera ready from now on. Scroll down for some (translated) columns I wrote about art in the public space.






















Update, 17 februari 2013


I am having hives on my cheeks the past week that itch like mad. Will add some pictures. I had them as well around this time of year in 2010 and 2011. I think they might come from some immune response, allergy or the cold/warm thing. They are not too bad but raised, like there is some fluid inside and they itch, like I said. Been trying to keep my cat outside the house (awwwwww) or at least not in the living room (awwwww), stick to a healthy diet, don't overheat or cool the cheeks too much but it is not my favorite time of year for sure :(  Have really red cheeks and flushing issues all the time and I am using my UVB narrowband light to get my vitamin D levels up a bit, but it only seems to help a little bit. Been walking for 2 hours a day again recently and I do feel a hellofalot more cheerful since starting this again. Long walks btw, no little walk around the block.
I am experimenting again with diclofenac, the NSAID medication I used for a couple of years. Looking back at pictures from those years I think I looked a bit less red, but of course that was 4 or 5 years down the line and I assume the rosacea is progressing a bit anyway with time. But I used it again last week, and some days I felt less red and paler, yet other days I flushed way more than normal and was more red, so I am stuck in limbo here, basically as usual with my rosacea. So will use it next week too and see if I can see some red line then and make a better conclusion about it.





Last week I went to a gallery exhibition opening with friends and had a nice conversation with a guy who told about his job as a school teacher. We discussed the art of course, my work as an art historian (nothing racy, just some research stuff) but his stories about his class (11 year olds) and how he is trying to incorporate art classes in his weekly program was so interesting. It made me long again to be a teacher myself. I was actually teaching at university for half a year when I was still a student myself, filling in for my ill professor on a subject I had good grades on the year before. It was about the writings of Pollock, Mark Rothko, Barnett Newman and some others on their art, very theoretical and analytical but it was great and I got fabulous results and feedback. I write on art publications nowadays but was also asked at some point to pick up certain classes at uni again. I was feeling so unfit health wise at the time that I passed on that opportunity. Still find that a shame, especially felt it when discussing art classes with this guy this evening. He told me about the challenges of letting young kids in a class environment speak out on their thoughts about art, and to encourage them to be analytical about it. When he brings them to a museum, he told me laughingly, they rush around like maniacs and are 'done' generally within 10 minutes. He struggled with finding a way to capture their attention a bit longer and we joked about ways to keep them occupied. It was interesting, also the ways he is dealing with social and cultural differences in his group and with parents who can be quite outspoken to him he said. It really got my attention and back home I did wonder if I should perhaps try to find a way to do some art teaching in the future, if only for a day or two a week, perhaps. Would have to make a few adjustments perhaps.. Maybe not, but I really doubt it would work in a class of children; a teacher who has to switch off the fluorescent lighting above her head, who has a cold class room and a mini fan roaring while teaching :( I know I would do great on the teaching itself, but the rosacea stuff is making me feel unfit in this respect. I have opted so far to write from home and stay behind the scenes, sort of.. 

The pictures of my skin are taken when I was red from a long walk with strong cold winds and the weird looking eruptions feel and look like hives, and they itch, but seem to are on their return now. For comparison, there is a pic of last summer and my skin was a lot less red then, as usual in summer for me.







3 comments:

  1. I developed rosacea three weeks ago and obviously going through hard times now. Have to accept this problem and learn how to live with it.
    You inspire me to go forward. You're such a beautiful lady and your blog is truly precious.
    ReplyDelete
  2. I just want you to know that you are a beautiful girl! Despite the fact that your rosacea seems very obvious to you, you have many other beautiful features that draw the eye's attention. It looks like you are kind of winning the battle against your condition, which is inspiring to me. Keep being a great example for all of us!
    ReplyDelete
  3. Thank you anonymous, that is so kind of you to say. I'm having really bad spells still too, currently having one with red rashes and burning itching cheeks that are on fire. But overall, it seems easier these days to deal with the rosacea than it was 15 years ago for me, even though my case was less advanced then. Glad I can inspire somehow :) Take care
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