Eight month and one week

Flare? Has hit me. Except I’m not sure if it is a flare. My skin integrity is still great, I’m now moisturized than ever on my body. Itch is still very mild, but a bit more than it used to be. But my skin isn’t great – I have these.. hives from allergies? Or something. Except the only thing that changed in my life is that my husband is now back from Australia. 

I’ve never had them before- it’s not like my original eczema or tsw that I’ve experienced. It seems to spread for past few days and now stopped? Maybe? It’s tiny little pin prick, usually clusters of them, but not filled with fluid- it’s solid. I scratch, and eventually when the skin breaks, it bleeds not ooze. Is this what people describe as bumpy skin? Any ideas? If I account return of husband as part of differential scabies seems most likely except the pictures don’t compare. And he is asymptomatic. So not scabies. Not herpeticum, not folliculitis (all of these present with fluid filled blisters). Just garden variety topical steroid withdrawal? But I don’t think I’ve read a relapsing flare present like this either. Hmmm. Help!

Two days ago (4/28)

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Today (4/30)

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Month 8 skin pictures

Click for bigger pictures if necessary! Super happy with the progress I am making!
Still doing MW, still sleeping really well (7-10 uninterrupted hours), still eating relatively clean, not taking any supplements, still drinking lots of rooibos tea.

back torso

back torso

front torso

front torso

outer arm, left

outer arm, left

outer arm, left

outer arm, right

inner arms

inner arms

front of neck

front of neck

back of neck

back of neck

front of legs

front of legs

back of legs

back of legs

And there’s my whole body! Kind of weird that the internet knows what my body looks like in detail, but I hope it helps!

Just took a warm bath and shower!

Apr 22: I don’t remember the last time I did this. Relaxing in the warm (not lukewarm) water? Exfoliating on purpose? Amazing!

I was giving myself a pedicure and realized how much dead skin I had accumulated. Then I decided I’m going to chance the bath and get all the dead skin of my body!

The bath itself was fairly lukewarm. It started been nice and warm but it got cooler quickly. I soaked and got all my dead skin off. Now, I was naughty and rub/scratched them off. As not recommended this method may be, I think it’s a testament to the strength of my skin that it took the casting and ended up fine on the other side. There was quite a bit of dead skin! Gross! I stayed in the bath for about twenty minutes.

Afterwards I rinsed off… except the water felt so warm and good I ended up showering for about fifteen, twenty minutes.
This is me right after getting it of the shower.

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I’m happy to report my skin is still doing fine! Victory!! During the shower my jaw line was feeling a bit itchy so I was worried, but it’s doing fine. My skin feels fine- no dryness or extra itches. In fact, it looks less ashy when I do scratch. This is probably because I got all that dead skin off. I’ll report back how I do tonight and tomorrow!

Apr 23: the night was good! I think I felt a bit itchier on my face, but I may just have been hyperaware. Day went all well fine, I took a walk for about twenty min and it’s sunny outside and I didn’t feel irritated. My face looks basically the same, maybe a bit more oil. My body skin feels more smooth and supple due to the exfoliation. Overall I’d call my little gamble a success!

Healed from topical steroid addiction?

What does being healed mean anyway? I was talking to the husband yesterday about how nobody really seems to know what healed means. There are people who claim that they are healed but they still flare here and there. Then there are those who feel better, and look better, but have been withdrawing for less than a year so they don’t get to claim they are healed. Those people are only on a break. Then how about those who have been withdrawing for years and are flaring? Are they not healed either? Or should they say that they are just on a break as well? If you are at 4 month and you feel better you have to watch our for month 6 flare. Then month 9 flare. Then month 11 flare. etc etc. When does that end?

That’s the thing I wondered about the most. There are blogs that claim to be done, but you never quite see what happens afterwards. There are very few who continue to update their blogs, with pictures, after their self proclaimed healing. The how do we know they aren’t just on a prolonged break? Did they ever flare again? How badly? Are your skin still sensitive? Dry? Do you have eczema patches that comes and goes? How do you treat it? Do you treat it?

If you define healing as “back to normal” then are you referring to back to “normal” when the steroids were still working? Because that’s not fair, as eczema was being suppressed by the corticosteroids. “Normal” when compared to other people in the world who never had skin problems? That’s not really fair either. Besides, for those who are going through moisturizer withdrawal, you then would be comparing yourself to “normal” people who are wearing moisturizers. That’s a unfair comparison.

Granted, with a lot of disease there isn’t a definition of being “cured.” You’re cured if the medicine worked (therefore the diagnosis was correct) and you feel better.

The following pictures show the worst parts of my skin right now. Face and left inner upper arm. Ridiculously enough, now my skin produces too much oil and I have pimple problems. There’s no winning is there aha. Nonetheless, I’ve never been so happy to see pimples! I think now it’s time that I start washing my face or something. I haven’t chanced taking a long hot shower yet, but I did take a short lukewarm shower and I was doing fine! I feel my energy is starting to come back and my main concern is discoloration.

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I will update with more pictures later tonight, hard to take pictures of your back by yourself. I tried, I really did, but my contorting can only take me so far aha. Will I claim I am healed? No, because I would still want my skin to become a bit better. And I have the time to do so. However, I know that I don’t really think I will be flaring again. I feel my energy increasing. I itch very little (less than 20 times a day, less than 3 seconds at a time). When I do scratch, it’s usually because there is a tag or a hair or something. I don’t really see any new patches cropping up. My skin continues to produce oil, although it can produce a bit more. Furthermore, if I stop improving now, IT WILL BE OK. I CAN LIVE LIKE THIS, HAPPILY. The discoloration will go away in time, and the dryness is nothing a light coat of oil can’t fix.

Well, whatever may happen, I’ll be sure to keep you all posted!

I went shopping for clothes today! (+ tips for shopping with TSW)

You would ask what’s the big deal?

The big deal, as those who live with me know, is that I LOVE clothes. But during the worst of Topical Steroid Withdrawal, I lived in a sack.

No. seriously. I lived in a sack. It was depressing. and ugly. For the sake of my poor newlywed husband, I wish I was kidding, but I donned the ever so fashionable sack, with no undies. Because my skin down there liked breeze. (TMI? sorry not sorry?) I was in too much pain to care about what I looked like, and even if I did care, the clothes that I could wear was really limited. Too tight, was bad. Too short was bad. Too much fabric was bad. Light colors were out. Thick fabrics, also out. etc etc so I lived in a sack.

I would post actual picture of me in my sacks (I have acquired about 5) but ain’t nobody who needs to relieve that.

But today, I went shopping! I’ve been needing some basics (I lost I a lot of weight) and Nordstrom Rack has additional 25% off clearance items so off I went! I would say this is a huge mile stone for those battling through Topical Steroid Withdrawal. The reason is two fold: 1. You have the energy to go out and stand amongst strangers for hours and hours (yes I like shopping that much) 2. You want to and get to wear lots of different, pretty clothes again! And you can try on clothes without worrying about getting blood and ooze everywhere!

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outfit 1!

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outfit 2!

I think healing from TSW is two fold – physically and consequently mentally/emotionally. Going through TSW does a number on your mental and emotional well being. Hard to feel good about yourself and care about other people when the only thing you can think about is how much pain you are in RIGHT. THIS. MOMENT. I feel that being able to go shopping and feel pretty and happy about how you look is a HUGE step towards complete healing from TSW.

That said, if you need to go to shopping in the midst of Topical Steroid Withdrawal, here are some tips.

  1. Don’t go unless you feel up to it/ you absolutely have to because shopping is hard work when you are sick.
  2. Shop online! This way you get to try on the clothes in the comforts of your home, which will get rid of your social anxiety that accompanies TSW. Amazon Prime (free trial available!) and Nordstrom is the best – Free shipping and return!
  3. If you have to make the trip out/are willing to make the trip out cover your skin. Wear something cotton and thin – like a tank top or a low cut long sleeve shirt – so you don’t have come in direct contact with the new clothes. Wear something thin and tight on the bottom as well.
  4. Narrow down as much as possible before trying clothes out. You want to minimize try-ons, if you are in the middle of a flare. More movement = More pain
  5. After purchase, WASH the clothes before you wear it out! This should prevent lots of irritation from excess dyes, etc.

I hope the tips help! Happy healing and as always, let me know if you got any questions!

 

 

 

Almost month 8 updates

Hello! Two days and one week before month 8 hits! I can’t believe how fast time has been going! My skin is continuing to improve, although my face is still a bit itchy at times.

I want to talk about how my health does aside from the skin. Topical steroid withdrawal affects overall health not just skin. Ever since I’ve gotten sick I’ve had trouble with low energy level- and if you knew me pre-TSW, that would’ve been a preposterous idea. Well, I’m happy to report my energy level keeps going up! About a month ago I went rock climbing.

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It was really hard. I’ve always loved climbing and it was disappointing how weak I has gotten. Then last week I went again and Lo! I am so much stronger!

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I am able to push through the pain! It’s incredible knowing that I am not only healing on the outside but inside as well. I am able to powerwalk for about hour and a half without getting tired. It seems pathetic from where I used to be but considering how I was seven months ago… it’s everything.

I am also happy to report a big milestone- warm shower without pain! Granted it was very short- just few minutes- but it was amazing how far I have come!

Happy healing everybody! Don’t get discouraged!