TSW

5.5 Months of the Merry Go Round

brianarachelle23

At this point in time, I don’t see much progress. I’m at a slight stand still. It’s tiring, but I just have to keep going. Topical Steroid Withdrawal gives you no rest. She is a relentless bi-atch.

And, I ask anyone reading this (who isn’t going through TSW), to take charge of your health. Don’t waste it. Don’t take it for granted.

I used to be able to get out of bed and be ready to leave within 15 minutes. Now, it takes me 1.5 hours to look half decent.

My Morning Schedule

1. Spend 5 mins in bed scratching. 2. Get up and walk to the bathroom 3. Spend 15 mins assessing myself and getting excess dead skin off 4. Shake out the rugs in the bathroom and sweep up all my skin. 5. Start the bath, pour my usual stuff in it, get some water, and set up my computer on the toilet to watch as I soak. 6. Take an hour long bath (where I get to sit in all of my dead skin). 6. Get out, and spend about 15 mins putting on about 3 layers of moisture (which doesn’t last long). ** Add 10 mins if I need to baggage myself ** 7. Go into my bedroom and pick out a lounge outfit. 8. Grab my vacuum and hoover the bed due to my lovely dead skin everywhere. 9. Go back into my bathroom, grab my cleaning supplies, and clean out all the wet, dead skin that was accumulated in the tub. 10. YEA! Finally get to start my day.

Sometimes I even take 2 baths a day. So double the cleaning.

So, again, I say DO NOT TAKE YOUR HEALTH FOR GRANTED. Live your life to the fullest. I have gained almost 15 lbs now from being inactive and I absolutely hate it. I feel gross, more so than before. Be active people. I can’t wait to get back into the gym, into dancing, and into flying.

Here is my progress.

Face/Neck/Head


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That is how wide my mouth allows me to open.

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Arms/Legs/Hands/Feet


 20150630_091731 20150702_092157 20150702_092208 20150702_092521 20150702_092529 20150702_092534 20150702_092625 20150702_092711 20150702_092715 20150702_092743 20150702_092807 20150705_102520 20150705_102537 20150705_102620 20150705_102630 20150705_102634 20150707_090758 20150707_091209 20150708_085036 20150708_085012 20150708_085007 20150708_085745 20150708_090202 20150708_090221 20150708_090253 20150709_230632 20150708_090307 20150712_092658 20150712_092733 20150712_092723 20150712_092718 20150712_092709 20150712_092740 20150712_092746 20150712_092752 20150712_092807 20150712_102126 20150712_093813 20150712_093749 20150712_102141 20150712_231600 20150713_051907

That is blood from behind my knees. I hadn’t realized it was literally dripping off of me.

Remnants

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Lots of lovely dead skin (and this was only a few days worth I believe)

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The craziness continues. On July 25th, it will mark 6 months of this. Half of a year. I still continue to be resilient, taking on whatever comes. It’s not easy. Everyday is a struggle just to get out of bed. But, there is no alternative to beating this. Because of that, I try and keep a positive attitude. Do I have my bad days where all I want to do is curl up in a ball and cry? Of course. I’m human. But I dust myself off (literally) and continue marching on. And I COULD NOT do this without my husband. He has been my shoulder. Even when he is away, he comforts me. And through this miserable phase of my life from this condition, I still feel like the luckiest girl in the world. I have the best husband, a loving family, and a great supportive team of friends. Thank you so much to everyone who has been so loving and caring.

To anyone suffering from this: You can get past this. You will get better. You will have your life back. Fight for it. xx

Love, B. R. Wren

3 thoughts on “5.5 Months of the Merry Go Round”

  1. Hey Briana,
    I didn’t know of the condition until I read some of your blog. I hope you get better soon! I have known you to be such a happy energetic person with awesome dance moves and I hope you can get back to that. I know you have got to be miserable at times with the itching and dryness but i’m praying one day your skin will be normal again. Keep your head up and Thanks for sharing your story.
    🙂

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  2. Hang in there. Just scrubbed through some of your pictures. Looks like you are improving…did you shave your hair off? I’d thought about doing that, but mine is short anyway. I’m at 18 months. I had it really rough the first 5 months, then it kinda cleared up for a few, and then came back with a vengeance at about 11 months. It got real intense for about 4-5 more months, and then it’s slowly burning out now. My face, scalp and ears have been the last to heal, but they’re getting under control; though they still shed continuously. I’ve been using T-sal (nu-tar, and then salicylic acid) shampoos, which would be easier if I removed my hair. Actually, the most annoying thing is my armpit, which is really inflamed: the skin is red and cracked, and very thin. I’m searching for something that might help mitigate that; for now, I cut out t-shirt material to stuff under my armpit to keep it in contact with softness. The seams on shirts seem to irritate my skin. Have you noticed this type of sensitivity, your self–thin/breakable skin?

    Anyway, good luck in your fight to regain your skin. Cheers!

    Marshall

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