This is the UV booth.
Hands are a little bit better this month
Face is a bit rough
This hand still has a ways to go.
This finger is vastly improved. Don’t need to bandage it daily anymore.
This month will bring us up to date with where I’m at currently. From now on I will post pictures once a month at the least but I’ll probably start using this blog as a way to track my symptoms.
February has been pretty good. Been slacking a bit on my diet but I’m still going to UV therapy and I started using Sudocream on my hands along with Aquaphor and it has improved their condition a lot. I also started using Cera Ve moisturizer for the rest of my body and my skin has responded well to that too. Hopefully it keeps working. As I’ve said before, the hardest thing dealing with TSW and eczema in general is that nothing seems to work for very long.
This month I celebrated one year without any topical steroids. What a crazy ride it’s been. I’m pretty sure I battled some kind of skin infection during this month. I experienced a lot of night sweats, which was really disconcerting. To combat this I started going to the sauna in my gym. The gym is in my building so I figured it couldn’t hurt. I usually do about a half hour to 40 minutes in there. I try to sit in for 10-15 minute intervals with alternating cold showers. I’ve heard that this may also stimulate the lymphatic system which I need as well; my lymph nodes have been enlarged since I started TSW which is also quite disconcerting. I’m not sure how beneficial the sauna is to my skin health but it doesn’t seem to hurt at all. It’s very comforting actually, I find that I get chills easily since I started TSW as well and my sauna time is usually the only time of the day that I feel warm and comfortable.
This was a really rough month. Not sure why exactly but I think the holidays played a part. I discovered how cheap boxes of wine were and was treating myself to red wine spritzers on a nearly nightly basis. I’m pretty certain the alcohol did a number on my skin and my sleep. On Christmas Eve I decided to have a couple rum and egg nogs, the next morning it felt like all of my joints were swollen as well as my face. Best Christmas morning ever.
A big thing I started doing this month was going back to UV therapy. I was also trying to do moisturizer withdrawal during this time which I cannot recommend doing at the same time; I was really dry which made me really itchy and, as you can tell by the pictures, I tore myself up pretty bad. I might have even had an infection on my hand(s), not too sure but I started experiencing night sweats around this time too.
The first few sessions of UV therapy are pretty bad. It’s like having a sunburn from the inside out. Which is kind of what TSW is like in general but this really exacerbated it. I was really red, itchy and started oozing in places that hadn’t oozed before (legs, collarbone, knees). It was awful. I pretty much stopped doing everything. After a few sessions though my skin had improved quite a lot in certain areas and spots that had been oozing before started to heal.
This month wasn’t too bad. There was a lot of oozing on my face and especially around my ears which was very annoying. My hands started to get worse for some reason too.
I was able to get an appointment with an allergist this month as well. I tried to explain to her about TSW but she seemed pretty unresponsive to the idea. I think she kind of believed me but she offered me some corticosteroids anyway. Lower dose than what I was taking but I declined them anyway.
My allergy patch test revealed that I was allergic to grass and trees, which I already knew from my days of landscaping. Other than that, not much of note and nothing to really justify this extreme eczema I am experiencing.
The allergist was also able to get me an appointment with a third dermatologist. He repeated what the others had said: atopic dermatitis. Treatments include topical steroids, protopic, experimental drugs or light therapy. I tried to bring up TSW to him, I even brought my laptop with links to various medical research papers and other TSW blogs with cases that mimicked my own. He quickly claimed that he had read everything on it and that it was “controversial”. He didn’t say what the controversy was, as far as I can tell the only controversy surrounding TSW is how slowly the dermatology community is reacting to it’s existence and the continued suffering of thousands of patients. At this point however, I am not willing to get into an argument with them about it. I’m treating my skin as if it’s AD even though I strongly suspect that it’s TSW. Either way, there’s not much the doctors can do; my body needs to heal on it’s own. However, light therapy seems to be beneficial for AD as well as TSW and since it’s very grey in Vancouver this time of year I decided it couldn’t hurt to resume it.
This is usually how I end up looking by the end of the day. I tend to go to sleep like this; the cotton pads absorb the ooze so I don’t get it on my pillow.
This month I tried a pretty extreme elimination diet. It was sort of like a paleo diet except I cut out eggs, legumes and limited the amount of fruit I ate as well. It was pretty crazy. I lost 10 lbs. in a week. Here’s a link to the diet plan. Although I stayed on it for a month I didn’t notice a huge change to my skin, which I kind of expected since I’m not really suffering from typical eczema.