Thursday, August 21, 2014

TSW day 241

Feeling better since my last post. My skin has stopped weeping for the most part. My "mustache" area remains somewhat raw but it was like that before too. It was one of the areas where I used the most topical steroids so it's to be expected. I feel like the detox from moisturizing is over and that I'm just experiencing residual effects from this last flare. I still feel super dry after a bath but it doesn't feel like I'm being stabbed by 1000 knives when I stand up in the tub. It no longer burns intensely when I submerge in the tub either, unless I went crazy itching somewhere immediately before. I still feel pain but it only gets really bad towards the evening (no idea why but it happens like clockwork). My neck, of course, is the worst area pain wise. It's the only area that hurts consistently throughout the day. Other areas, like the top of my feet or back of my knees, get really sore but only if I go crazy scratching them. My neck, though, hurts even when air touches it. It's weird bc cold air hurts it but an ice pack soothes it. Why is that?? Also interesting - I no longer feel so hot that I need to keep the house frigid. In fact I am usually the one raising the temperature a degree and then cuddling under a blanket.

I'm still finding comfort from my 2 baths a day. I think this is a contributing factor as to why I was so uncomfortable the first time I did moisturizer withdrawal. I would bathe every other day but felt so stiff and dry. Then I would itch like crazy, ooze, dry, crust, and develop thick scabs that I would pick at only to reveal raw, unhealed skin underneath. With my 2 baths a day, it never gets to the point of building a thick scab. I know a lot of people benefit greatly from letting their skin dry out by not bathing every day. I am not one of those people bc when I have scabs or dried ooze, I feel dirty and get really grossed out and feel the need to "even out" my skin by scratching off the scabs. So I'm just going to listen to my body and continue bathing 2x/day until I find it unnecessary. Another improvement as of today - I'm able to crack my neck OUTside of the bath. Ahhhh freedom. Mobility is really taken for granted until you don't have it anymore.

In other news, I'm gearing up to travel again. My brother-in-law just returned from Afghanistan so we're heading up to NY to welcome him home. We are so thankful that he returned home safe and sound. Since I've already travelled once during TSW, I'm not really worried about doing it again. The only concern I have is having to share a bathroom at my mother-in-laws. I'm admittedly kind of high maintenance. Thinking about other people showering in the same space I have to bathe really grosses me out. Obviously I will clean the tub before each use but still... Here at home, I have a tub separate from the shower. Whatever, I'll get over it. I'm excited to see my family up there and a few friends hopefully. Obviously only the close ones that are aware of my condition and willing to leave the city to come visit me in the burbs :).

EDIT: I wrote the above yesterday morning. Since then things have gone downhill again. Jeez, this is such a roller coaster of emotions. I had 2-3 good days at least. A good day right now consists of having a good nights sleep the night before with only one wake up, and then several hours of productivity (house chores) accompanied by little to no pain, and lastly a bath that doesn't hurt like crazy. Even on these good days I ended up napping for an average of 2 hours each day. And then I'm kinda done for the day bc the earlier productivity used up all energy reserves.

So there ya have it. Back at square 1 for now. Too tired to post pics, will do so next time.

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