Shitty things about TSW

rated pg13 for language? Or something you have been warned (check out the tag for a sample!)

The horror that is TSW – how I hate thee, let me count the ways.
It’s three am and I have been up for at least two hours scratching and tossing and turning and crying from frustration. For the past hour or so I’ve been playing candy crush to take my mind off of the itches. It worked somewhat. My exhausted fiancé sleeps on after giving me rubs and cuddles, and otherwise generally loving on me in attempts to make me feel better. It succeeded somewhat. He is amazing I love him. When we get married and I’m healed, all the favors belong to him.

So it’s been a while I’ve been this (all consuming itch that won’t go away and won’t let me sleep and it itches in so many places at once I want to be like that one Hindu god with crapload of arms because two is not doing the job) uncomfortable and scratchy. I’ve been good at sleeping for months and to go back to this cycle of scratching and tossing and turning is massively frustrating. For me, the worst parts about TSW isn’t even the physical pain. The worst part about TSW is the way it thoroughly fucks with your mind as it takes you along this roller coaster of a journey filled with highs and (mostly) lows. It’s the hopelessness you feel when you flare up again after seemingly improving for a while. It’s the knowledge that the scabs and oozing patches that are all over your body might not be there if only you had the strength and self control to not scratch (although fuck me if I know how to have said iron will). It’s knowing vaguely that this will all end sometime but not having the slightest fucking clue when that would be. It’s the constant state of fear you live in, not knowing when the next flare will come and push you off the cliff of positivity and into the pit of despair. Sounds dramatic? The amount of feels this illness gives me are most definitely of the dramatic proportions.

One would think that since I have already been through one huge flare, I will meet the next one head on, bravely, assured in the knowledge that if I got through it once, I can do it again. In reality, the opposite seem to hold true for me. Because I already know just how shitty it really gets, if anything I’m more scared. A pediatrician once told me that kids are better at coping with pain because they don’t know any better. I believe it. I guess in the recess of my mind plays the tune “I did it once, I can do it again” in a loop, but in the forefront of my mind stands a boombox, subwoofer and all, and it goes “ah shit shit shit I don’t want to do this again first time was shitty enough I can’t even why nonono” in full volume.

I’m going to have some form of PTSD when I’m through with this.

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Week 17 update – flares :(

Hope everybody had a wonderful Christmas! I had a great one although it was a bit marred by the fact that I was flaring. I’ve been flaring since last weekend but the flare intensified two days ago. My neck hasn’t even this dry since month three or so. My back had rashes and bumps for the first time in a while as well. Now my skin feels right from the dryness. It seems the best thing for healing, for me, is if I just chill and rest on my bed but sometimes I can’t or don’t want to do that and I seem to pay the price.

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Look how dry my skin looks! And that patch on my raw jawline just doesn’t seem to heal. My legs are bit oozey – sticky ooze not gushing will-soak-through-all-the-fabrics oozey. My neck is less ooze and just scabby which I think makes for worse pictures. How was everybody’s Christmas? Hope it went flare free!

Four month picture update

Here is the pictures. Looking at pictures from month one, I have come a long long way. The lighting is so hard to get right with my iPhone and so I include multiple face and arm pictures taken from various lighting. My skin is definitely stronger and I think I’m getting stronger internally as well!

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I think the picture taken furthest away is probably the most accurate depiction.

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I am definitely going through a mini flare – I woke up once or twice and scratch my arm wound like crazy. Edit: just started my period, flares always come when I have my period Hence the red raw skin. My butt looks like that but worse and more scabby and oozey.

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There are actually quite a bit of soft to touch, almost normal skin on my back and stomach. My nipple oozes just a bit now, nothing compared to what it used to be.

If you have any questions or want better pictures, let me know! Happy healing everybody!!

Four month down – quick update

Oh tsw, you suck.

Back when I still was using topical steroid, I had a random thought. It was the night before a banquet – the type everybody dresses up and look really pretty. My main worry was not what dress I will wear or other silly girly thing. I was worried about my skin. Then the worry projected into the future and I thought, “gee it would suck if on my wedding day my main worry would be my skin”

Well the worry may be painfully spot on. My skin seems to be doing ok, especially when I consider how far I am (not far) in my journey. I sleep really well, and there are good chunks of time -about an hour or so- that I don’t even think about my skin because I’m itch free! When I say I sleep well, I mean usually (~75% of the time) I don’t wake up for about eight to ten hours. It’s amazing! When I do wake up though, I scratch away and I become a bloody mess. Despite the improvements, however, I wonder if I’ll be presentable enough at my wedding. I think the worst thing about tsw is not the pain and itch itself. It’s living in constant fear of the next flare. I live in fear and worry, scared that I will unknowingly eat the wrong thing, do the wrong thing, be at a wrong place and I’ll be a itchy oozing bleeding mess.

So I worry. Currently my face and lower butt is the worst area, so I worry. In the end I know it’s about the commitment and the man I will promise to love, but I can’t help but wish my skin will behave and I will look good on my wedding day. A part of me is considering going on immunosuppressants, but last time I was on it I had the different type of infections on my face, so I’m worried it might make the situation worse. And if I remember correctly, it didn’t help too much anyway.

Pictures will be coming soon. Overall I’m grateful for the progress I am making, but of course, I wish I could be making it faster. I am currently off traditional medicine, as of about a week and half ago, and been eating all the meats. We shall see how that fares with my skin.