And the itch goes on…
9.5 months. It’s been annoying, to say the least. I am living at my mother’s house, my husband is away being a bad ass, my dance friends are shoulder rolling on different stages, and life seems to be flowing as normal all around me as I sit and wait… and wait… and itch… and wait.
I see improvement, but it’s just so painstakingly slow. It’s not enough to have me bed ridden, but it’s enough to play with my mind and keep me from pursuing my career in the arts. I am longing for the stage, an aerial class, a play, a musical, helping a cause, a full day outside with no pain, my long lost hair, non red and blotchy skin, a full night’s sleep, a chance to be a functioning human again.
9.5 months… 292 days. Can you imagine it?
The thickness in my legs and creases in my arms is so strange. It’s literally deep set wrinkles. The elephant skin is obnoxious.
It’s even in my belly button!! And my skin is this plastic like casing. It’s not real skin. People may think it looks better, but it’s not actually normal skin. It doesn’t move the same and certainly doesn’t feel the same.
My nails (my thumb and middle finger mostly) have been severely deformed. All my fingertips hurt with the pain of constant scratching, but the actual nail on my thumb and middle finger are decaying. There are two different levels in my middle finger and three in my thumb. However, these past 4 days I have been taking Biotin and it makes SUCH a difference. I can see that are trying to rebuild themselves.
More fun skin. Just a wrinkly old woman. Makes stretching difficult.
One happy thing is my scalp doesn’t have the weird skin anymore! I wasn’t able to start growing my hair back because of it. But, it seems to be toughening up. The back is still a bit red and it flakes, but no where near as badly as before.
My face is a roller coaster. One day it’s only a small nuisance, and then other days it aggravates the hell out of me. My neck as well. Turning my head can sometimes be painful.
Hands, feet, arms, and legs are so itchy. Sometimes they can be very red, and then sometimes they can be lightly pink. And this can all happen in one day!! It’s a fun time when TSW is your companion.
I truly can’t believe I know other sufferers who are way past the 1 year mark of enduring this horrific condition. I see them still having to trudge through each day with all of the pain. Doctors NEED TO LISTEN! We shouldn’t be the ones educating them, arguing with them, being bullied by them. The use of topical steroids for a long period of time (MORE THAN 2 WEEKS!) should never take place.
Homeopathic doctors are the way of the future. It may not be a “quick solution”, but that’s the problem with this world. Aesthetics rule over health. Greed rules over health. I’m sick of it, and you should be, too. Do what’s best for your body. Instead of depending on pills and medications that are doing your health harm simply so you can look better, find out what mother nature can offer you first.
I ordered some Camu Camu powder to mix in with my smoothies in the morning. It is a superfood rammed with Vit C (more than oranges). Apparently high doses of Vit C can be extremely helpful to the healing process. I’ve also ordered more viscopaste (zinc wraps) for my skin, more Jojoba oil for my scalp, and some more shea butter to mix with some essential oils that can help rebuild and protect my skin (geranium, grapefruit, rosemary, clove, lavender, and tea tree). There are many more that I could add to the list.
Keep fighting! Keep going! I know the road can be long and exhausting, but the end is worth it. Think that Ryan Gosling is at the finish line!! (Or Benedict Cumberbatch, or Jack Huston, or Chris Pine… Evans… Hemsworth) Or Jack Wren xoxo
Love, B. R. Wren