Reflections on 100 Days of TSW

I made it to triple digits!!!

celebrating-womanhood1

I have to say that around the 90 day/three month mark is when things really started taking a turn for the better for me.  I overall just FELT better and more like myself, even if I didn’t have huge, vast improvements.

Right around 90 days I experienced another flare cycle (my third one), but each time, the flare-up has been successively less severe.  I measure the “flare cycles” by the areas where I probably used topical steroids the most, cumulatively – knee and elbow creases, and on/behind shoulders (and also my groin area – it got really bad, though I never used steroids here).  These are the areas that ebb and flow in regard to flaring, then getting dry and flaky, then getting white and smooth and clear, and starting over.

My face, neck, and stomach, for the most part, have taken a trajectory of simply slow improvement with a bit of flux here and there, rather than the same flare cycle.

I didn't really get the crazy peeling skin like a snake, my skin was more flaky, but I like the flakes because that seems to mark the end of a flare and the start of a calm period for me.  Once I rubbed all these flakes off my neck and moisturized, it was good!

Late April.  I didn’t really get the crazy peeling skin like a snake, my skin would mostly just have a ton of tiny flakes like this, but I like the flakes because that seems to mark the end of a flare and the start of a calm period for me.

I am really happy with my progress so far!  Besides the pictures in this post, here are some more observations of healing, compared to, say, about a month ago.

  • A month ago:  I had to wear a scarf to work every single day because my neck was so red and raw.

    This is how my neck USED to look.  Great improvement!

    This is how my neck USED to look in the beginning of TSW.  Compare this pic to the one with just the little flakes above. Great improvement!

  • Today: I can choose to wear a scarf because I WANT TO – not because I have to.  Thank goodness for this, because spring is here and the other day it was like 80 degrees, a scarf would have been maddening.  I can wear any neckline of top that I want, as my neck only needs a little bit of concealer to smooth out the slight redness in parts.  And I can wear necklaces again too.
  • A month ago: I was constantly tugging my sleeves down over my hands and wrists because they were so ripped up.  I would hide my hands in meetings or if people would talk to me – it became like an automatic reflex.
  • Today: I can actually have my hands completely exposed and be okay with it, even wearing 3/4 sleeve shirts and bracelets and watches again.  Yes, no one is going to ask me to be a hand model any time soon, and my forearms still have many little round scars or scabs, but these and the uneven skin tone on my hands is only apparent if you’re really up close.  I can’t wear short sleeves confidently just yet but I will get there too!
    My hand near the end of March.  It was rough, red, dry, and scabbed.

    My hand near the end of March. It was rough, red, dry, and scabbed. I had really red hands at some points, but I don’t have a picture of those.

    My hand, a few days ago.  Looks almost normal!

    My hand, a few days ago. Looks almost normal from here!

  • A month ago: My earlobes were cracked and oozing and flaking.  I always made sure my hair was covering them so no one would notice, and wearing earrings was completely out of the question.
  • Today: I can wear earrings again!  My earlobes are still a little flaky in the mornings, but almost normal.  I have heard that nickel is a common “allergy” among TSW people – that is, when they get the patch test or allergy test, nickel shows up on there frequently, so I have been very careful about not wearing “cheap” earrings, I only wear one pair of studs that is hypoallergenic.  Actually, this jogs my memory – I used to be able to wear any type of earrings, I had a bunch of cheap ones, and then my ears started getting sensitive.  I didn’t link this with TSW until thinking about it just now – it has to correspond since it happened around the same time and had to be a result of my skin getting hyper-sensitive all over.
  • A month ago: Most of my face was very red.
  • Today: There are still areas that sometimes are quite red – namely around my eyes (I expected this, as I used TS around my eyes – bad move, no one should ever do it!!) and some patches on my cheeks and jawline – my left side has always been worse than my right.  BUT, other parts have almost completely cleared.  My entire forehead was red, now it’s nearly clear.  I had a huge clearly marked patch on my face’s right side, and it has vanished.
Here I am looking sad and red, with my entire forehead, all around my eyes, and into my cheeks all red.  Oh and hey, I just realized that the way I blacked out my eyes makes it seem like they are uneven.  I promise you I do have symmetrically placed eyes, as if I didn't have enough issues with TSW.

Here I am looking sad and red near the end of March, with my entire forehead, all around my eyes, and into my cheeks all red. Oh and hey, I just realized that the way I blacked out my eyes makes it seem like they are uneven. I promise you I do have symmetrically placed eyes, as if I didn’t have enough issues with TSW.

Here I am looking way less red.  In this picture I look almost normal.  I do still have some red patches but wow is this an improvement.

Here I am looking way less red. In this picture I look almost normal. I do still have some red patches (you can see my cheek and neck are a bit blotchy) but wow is this an improvement.

  • A month ago: I didn’t have much energy and felt like I was just in “survival mode”.  If I managed to be able to go to the gym or get outside and exercise, that was a stellar day.  The only exercise I could really do was walking, or MAYBE running or weight training once in a great while if my skin didn’t hurt too much and I was in a decent mood.  Really I just wanted to sit in bed or sit in the bath constantly.
  • Today: I have a consistent energy level!  I feel energetic and motivated on most days and I WANT to work out on most days.  It also helps that it doesn’t hurt to move anymore, as opposed to when my knee and elbow creases felt like the worst sunburn and just walking was painful.   I realized my “old self” was coming back the other day when I woke up at 3:45 AM, scratching (it’s not the crazy deep itch of bad TSW anymore, just a dry skin type itch), and my first thought was, “Well, I’m wide awake, maybe I could go for a run.”  I didn’t run, in case you’re wondering – I may FEEL like I can do boundless physical activities like start training for another marathon, but I need to not overdo it and harness that energy into productive workouts that build up gradually and don’t burn me out or overtax my recovering adrenals.  I do get really tired after exercise, so I am cognizant to not rush into doing too much.
  • A month ago: Sweating would make me go crazy, itching and ripping at my skin.
  • Today: I can sweat and although it does still make me itchy sometimes, it’s not completely insane, and my skin has become more resilient so I really don’t damage it if I DO itch.  I still haven’t done any TRULY really sweaty activity, which I’m a little nervous about trying, but I will try it soon and see what happens.

When you’re in a period of healing (or one of the lucky ones completely healed), it is somewhat easy to forget about the tears, the sleepless nights, the constant clawing at yourself, the flakes everywhere, and the feeling of being trapped as a prisoner in your own body.  That’s why I have this blog – I want to move on, but I don’t need to forget – because knowing how bad I was makes me appreciate how I am today.  My only regret with TSW is that I didn’t start it sooner!  If I had started back in September when my skin first began to act up, I would be around the 9 month mark by now!

I could write more but I will stop here.  To all my fellow TSW warriors, encouragement and hope goes out to you.  It does get better!

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14 thoughts on “Reflections on 100 Days of TSW

  1. Courtney says:

    Yay!!!! Your skin is looking amazing! Proof that it CAN heal on its own. You’ve been really inspiring to me to stop using steroids.

  2. tomatoskingirl says:

    Wow this is awesome, you’re so lucky to be healing so quickly! Your skin looks fantastic. 🙂

  3. Mie Ululani says:

    YAAAAAAAAAAAAAAAAAAAY! so happy for you!!!!!!!!!!! i remember the first time i could wear a necklace again i almost broke down in tears. it’s still a point of pride for me when i wear necklaces til this day. so happy for you and your progress

  4. Great post! Your doing awesome and its so insane that all of us TSW sufferers are feeling the exact same and going through the exact same things.I had to wear scarfs everyday but now I have a collection that I can choose from! I never wore scarfs prior to withdrawal but now I love them.I can’t wait for you to heal! Keep going strong! Love your hair!!!

  5. Louise says:

    Hooray! Great news beautiful girl! X

  6. Congrats! Glad you are seeing improvements.

  7. joey says:

    good on you for sticking it out this far,

  8. Thank you all! I am so appreciative of every single one of you and your positive words and encouragement for me!! 😀

  9. Wow, you are looking wonderful! It looks like you’re healing up quite quickly 🙂

  10. Vee says:

    This was super exciting! I am 3 months in aswell, and seem to be progressing the same as you! I coud totally relate to the scarf issue! Thanks for posting 🙂

  11. Molly says:

    Congratulations! What a feat. 🙂

  12. Congrats on making it to 100 days! I real milestone! You look amazing, and more importantly, it seems that you are feeling better, too. I’m happy for you! xo

    • Thank you SO much! We take looking and feeling “normal” for granted a lot and it is such a blessing to feel more “normal” with TSW! I appreciate your kind words 🙂

  13. Thanks for your marvelous posting! I genuinely enjoyed reading it, you may be a great author.
    I will make certain to bookmark your blog and will come back in the foreseeable future.
    I want to encourage you to ultimately continue your great writing, have a nice day!

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