50 Days into TSW

Very quick update on 50 days in (making 7 weeks of withdrawal).

Monday was a pretty amazing day.  I actually went for a run wearing SHORTS (yes my legs were very far from perfect, but they felt good and no one was going to see them up close) and for a little bit, I forgot all about eczema and TSW.  My elbow creases were pink and smooth and save for the clear demarcation of color between the red of those and the paler color of the rest of my forearm, they were looking really healed.  I could have worn a t-shirt in dim light and probably looked fine.  The rest of me was about the same, but I was so thankful to be seeing signs of healing that I was pretty overjoyed at those small improvements.

Then…

I was reminded that this journey is often described as “two steps forward, one step back”.

Yesterday my neck had been itching for literally three of the last hours at work.  I used all the sheer willpower I had to not itch at it.  Then I had to go to my former house (my husband’s house – I guess I’m just going to start calling him my ex-husband) to get some things.  I could not resist the urge to itch anymore and promptly started ripping at my neck, leaving it scratched and oozing.  Well THEN I had to go to class, so I was less than thrilled by having to sit all evening in a lecture.  Oh, plus a classmate started telling me I look very tired and was I okay – so I gave him my explanation about how steroids poisoned my body.  He just kept looking at me so I felt the need to babble awkwardly about the topical steroids and that I would be okay in a while, it just takes time.  But then he just started asking a bunch of questions, saying I need a good dermatologist, and I didn’t feel like dealing with it.  I was actually going to skip school for the third time, but I figured I better go before I miss too much.  Being away from home for over 12 hours between work, ex-husband house, and school left my skin feeling stressed and unhappy, making me itch even more when I finally got home.

So I had a stressful day yesterday and I also had coffee.  Yes, I went back to coffee after giving it up.  I try to limit myself to 1-2 cups PER WEEK but with the whole adrenal suppression thing of TSW, intuition tells me that overworking my adrenals with caffeine is probably not what they need.  However, the double-edged sword is that it wakes me up and helps me function and also boosts my mood – all things that I really need with TSW.   Not sure if coffee had anything to do with my skin, therefore.

So today I appear to be starting another flare, since in the previous days I was doing better and getting some relief.  I need a moment to whine.  I am so done with TSW.  I have had it!   It can go away any time now!  I know other people have had it much worse off, and I know I should be thankful that at least I’m 50 days in.  But today I feel scraped all over, my face is tight and dry, my neck is stiff and itchy,  my elbow creases have gone from smooth pink skin to wrecked red scratched skin, my hands are raw, whine whine whine.  My face is SO red and I REALLY wish I could take a leave of absence from work.  Working 40 hours a week and doing TSW is no joke.  Even a week off work would help (of course then it would mean explaining to all my co-workers why I was gone), but the problem is that I would need a doctor’s note, and any dermatologist I see is NOT going to be understanding of TSW – I’ve SEEN probably 6-7 dermatologists in the area over the years and none of them really impressed me.

Bad day in skin world – I’m going home and going to bed after work today!  I’ll be back next time with some more sunshine and optimism hopefully instead of complaints 🙂

 

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18 thoughts on “50 Days into TSW

  1. Amanda says:

    Would your regular physician give you a doctor’s note? I agree, it would be helpful to have time off going through something like that, especially with everything ELSE you’re going through. Ugh. It’s great that you got a run in though. A good workout sometimes helps everything!

    • They might! I don’t have a ‘regular physician’ anymore though, which is why I’m kind of hesitant – I don’t want to go see someone new and have to explain everything and take the chance that they might just be really ignorant about it and try to get me to use steroids again. Yes, working out makes things better! I ran again today and it really helps distract me. As long as I am feeling okay I am going to make sure I keep doing it even when I want to be lazy!

  2. Ugh, they should give you a doctors note just because of the state your skin is in!!! One of my doctors did that for me…. I just can’t remember if it was my primary care physician or my allergist or my dermatologist or the patch test specialist/dermatologist….. I wonder why I can’t remember who it was 😉

    Stress sucks 😦

    I’m glad there have been SOME moments of your skin not completely sucking, though.

    *HUG*

    • Ha, you have so many doctors! You must feel like you are buddies with some of them now…If I had been seeing that many, I’m sure ONE of them could give me a note!! Thanks for the hug… I NEEDED a virtual hug! 🙂

      • Yeah, they rock 🙂 When they were trying to figure out what was wrong with me initially, I was DEFINITELY seeing my doctors way more than my friends, ha. Glad the hug helped!

  3. Wishing you lots more Happy Mondays! 50 days in, well done!

  4. hannah says:

    hi – just wanted to say – can you not ask for a week or two off based on stress from your gp? blame it on your marriage break up if you dont feel like getting into your skin woes? i know its probably the last thing you want to talk about to a gp, but normally gps are good about giving time off for stress, and you deserve a week or two to relax! good luck, congrats the first 50 days are the worst xxx

    • Yeah, I might do that if things get bad. Like I mentioned to Amanda above, I don’t have a designated regular physician anymore, but I’m sure some doctors would be understanding about it and give me a note. I am doing better today but I’m going to keep that option open if I feel I REALLY need some time off. I appreciate you saying the first 50 days are the worst – I hope things only get better from here! How far into withdrawal are you???

  5. Mie Ululani says:

    You are so strong! Every “bad” day, remind yourself it’s no place you haven’t been before, therefore, no place you can’t rise above again! Thinking of you, and you should feel entitled to complain about EVERYTHING! It’s pure torture and requires mental fortitude like no other.

    • Amanda says:

      I agree! Complain away! 🙂 don’t feel guilty or ashamed for it.

    • Thank you Mie! Your words are so encouraging and helpful. You should write a self-help book for TsW and eczema sufferers… oh wait, you have your great blog which is like a book 😉 You are right, I will rise through this! Eczema and TSW will not win the battle – they may have temporarily taken over my skin, but they will not overtake my hope and my spirit!!

  6. tomatoskingirl says:

    Congrats on 50 days! Sorry your dermatologists are so unhelpful. 😦 I don’t even bother with skin specialists anymore I just see regular doctors. Most of the ones I’ve been to (I usually alternate lol) are happy to give me a doctor’s certificate for a few days when I flash them a bit of scratched up skin and tell them I can’t concentrate at work because of all the itchiness. Hope your flare goes away soon!

    • Yeah thats a good idea. I think a regular doctor would be less likely to try and push steroids on me than a dermatologist. So I might try that. I’m feeling some better today which is good!!!

  7. Leslie R. says:

    Hi, I have been checking into your story. Good luck, I went through all of the same stuff too.. I am 3 years off of steroids now. I live in Southeast Michigan.. I think you and I have a ton in common. I am doing so much better now. Keep going…this is definitely the right thing to do. I was a total full body mess a few years ago.. Now I still have a few areas that I deal with but not too bad..mostly my skin is totally normal.. . Leslie R.

    • Hi Leslie, thank you for visiting! It’s always so nice to have yet another person come forward and comment who has been through this and is doing better. It’s easy to lose hope in the early stages so I’m forever grateful for everyone that comes by and encourages me to keep going. How long did you use steroids for and did you use them all over??

      • Leslie R. says:

        Hi, I was prescribed topical steroids years ago for a rash I had developed. I think at the time I overused them, but it was recommended. It is a very long story but I cannot post the entire thing here.. Anyhow, I was prescribed Aristocort Ointment and Desonide lotion to be used each 2 times per day all over my body, my rash was a bad one.. I did this going through a ton of steroids in a short time, but was prescribed this by the dermatologist. after a few weeks the rashes on my body did go away. However, after a few years, a rash began to come up again and I finally went to the dermatologist. The minute I applied steroids to my skin, the entire rash began to pop back up, it was really wierd. I struggled for about 2 years like this, going to the dermatologists, getting patch testing, biopsys etc.. I was diagnosed with severe adult onset atopic dermatitis of unknown origin. By the way, I had never had a problem with my skin before in my entire life, no allergies, no eczema, a little dry skin, no issues and perfect skin… I was using the steroids this time minimally, and my rash got very big.. It eventually covered about 90 percent of my body, the only areas spared were my feet and lower calves. I had terrible issues on my face, mouth, eyes, scalp, ears, groin, torso, under my arms, shoulders, front and back, arms, terrible hands and wrists, and more areas even.. I was pretty desperate and nothing was working and I looked like a monster.. anyhow.. I found a copy of Dr. Raps article and suspected I had the condition based only on that.. So I went thru the worst of times by myself, I made a ton of mistakes with my skin but I finally came out the other side.. it was HARD….that is my story… and by the way, the above rash came about after hardly using steroids, I tried many but never even went through more then an third of any of the tubes and a few steroids I only used once or twice at best.. I also had a few steroid shots.. I am mostly clear now, a few small areas, nothing like before though… I am very happy that I am where I am now…If I had not stopped steroids though, not sure what would have happened to me..

  8. @ Leslie R, thank you so much for sharing more of your story. I am so glad that you were able to come through the other side. I know it must have been hell. I am so thankful that I found ITSAN and realized all this while I’m still relatively young in my 20s and that I can get through this and have the rest of my life free from the terrible monster of eczema and TSW!! If you ever want to talk more off line feel free to email me: nubtorious@yahoo.com.

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