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)

 

More photos of cold urticaria on 

my cheeks in winter:

Summer/spring the past years

 

And back to winter again:

 

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 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 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.

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 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 then and make a better conclusion about it.

The secret plans for invasion of the moon from the north side, 1923

Update

in general I seem to be more red in winter than in summer. Which sounds very strange to my parents and friends' ears haha. 'Weren't you always too hot?' But through forums and online groups I know more people like me, with red hot skin flushing, who have calmer skin in summer and much worse flares and general redness in winter! I think it has to do with several factors; in winter the outdoor temperature is a lot different from indoor temperatures, so when you go in and out of places, your skin deals with constant temperature fluctuations, which sets the blood vessels off to flush. Read about the warm room theory to hear more about this phenomenon. Cold weather also tends to constrict the blood vessels in the face more extremely to preserve body heat, and then when you enter a warm room, the capillaries in your skin dilate rapidly, which puts more pressure on them. Maybe that is why some people in cold and wind swept climates (think of Mongolia) have more often a ruddy reddish complexion. Once you have visible broken veins on your face, laser or IPL can remove them again, and taking vitamin C is often suggested as way to strengthen the blood vessels.

Either way, in summer I am often not as flushed and red, as long as I don't go in the sun directly and keep a breeze on my face (fan, natural breeze) and take my anti-flushing medication, my skin can be quite pale in this season actually. I do use the airconditioning however to keep indoor temperatures around 20 degrees. But even when it rises to 22 degrees Celsius for instance, I am usually fine as long as I have my fan. Whereas in winter, going into a room that is preheated to 22 degrees, means a lot of flushing, burning and red hot pain for me usually. Natural warmth seems to be different for rosacea skin than artificial heat. Indoor heat is a killer for my flushing and even above 18 degrees then is too much. Outdoor heat, well it depends if other factors are flushing me up (hormones, skin plucking, diet) but if my skin is calm already, then even 25 degrees Celsius outdoors with a fan on can be fine for me. Unless it is humid 25 degrees, then it is much too hot. Humid heat triggers my flushing whereas dry heat doesn't as much. In winter I get cold urticaria too so might perhaps just react bad to very cold temperatures I suspect and then the extreme temperature differences indoors and outdoors are horrible; stepping out in the cold, coming back into a warm room and whoooosh, I'm like a forest fire. Picture; my skin in summer versus winter: