5 months down, 155 days...
Updates are good, and today I have pictures. I've been really avoiding the camera, because in my mind, if I can't see how bad it looks, I don't think about how bad it hurts. Not sure if anyone else feels that way? I think it's the whole "out of sight, out of mind" type scenario, for me anyway.
So, TSW still sucks. Just in case anyone was wondering... LOL! As a matter of fact, month number four might have been the suckiest so far. Besides looking like I'm 97 years old, the actual itching/burning has intensified. My neck and chest feel like they're being stung continuously by fire ants, and of course it doesn't go full blown until the moment I lay my head down... Because why wouldn't it? TSW, you itchy little beast with a mind of your own... As Liam Neeson would say "I will find you, and I will kill you." - That's right TSW, I'm coming for you! HAHA, just kidding... this shit owns my life. Sigh.
Right now, my routine really just consists of "waiting". Honestly, I've realized that there really isn't much else I can do, but wait. The saying "time heals everything" takes its most literal form here. Unfortunately, the days are long and the nights seem longer. I've had a consistent flare cycle, which typically lasts 3-6 days, then I get about 2 good days, and then the cycle repeats itself. That has been the general tone since I started TSW, but like I said, it seems that the rashes have intensified. I have not changed anything in my diet, as food has never been a trigger. There isn't really much else to eliminate that might have a direct impact on my flares. I know this is a controversial topic, but for me, diet has nothing to do with it. However, I will say that if I am not drinking AT LEAST 64 oz of water daily, I notice a significant difference in the way my skin feels. The flaking is worse and my skin feels like the driest day in Death Valley. That is the only impact diet has on me at the moment.
Everyday is a struggle. The worst time for me is the morning... I wake up and it's straight to the bath I go. Laying in bed after waking up is a thing of the past. I can't lay comfortably because my skin is SO tight, dry and burning (seriously, fire ants), that simply moving sends me into a full blown scratch attack. Or, there are the days I wake up drenched in my sweat and smelling like a dirty sock, followed by extreme itching. I actually prefer to wake up sweaty, because then I feel that I actually have some elasticity in my skin. Typically, I don't feel ANY elasticity until I've had a 15 minute bath and my first bottle of water. After my bath, I pat myself dry and then I spray my face/neck/chest with La Roche-Posay Thermal Spring Water spray, wait for about 5 minutes and then I apply Vaseline to the dry patches on my face/neck. Over the last 5 months, I've gone back and forth with moisturizers/lotions. My skin is changing constantly, so there are times when I need a good moisture sesh and I can tolerate it. Right now, I'm not using anything on my body, just Vaseline on my face. My skin heals MUCH faster when I don't put anything on it. Novel concept.
Itching and scratching... what can I say? It's miserable... Looked like my arm was mauled by a pit bull the other morning, so in order to get through my work day without blood/ooze all over my desk, I wrapped it up real nice.
...and I took these today. Ugh! Those TSW eyes... I can't believe how old I look. :(
My arms have taken the brunt through this process. Always red, always itchy, always burning... Even on the days that I'm not flaring, my arms look like this. I've been living in sweaters and long sleeve t-shirts oh and BIG sunglasses to cover up those TSW old lady eyes. And yes, I do wear them on cloudy days and inside the grocery store, I'm THAT person.
Hopefully you are all doing well. Keep fighting the good fight! Remember, at the end of the day this is a guaranteed win.
"I've been absolutely terrified every moment of my life - and I've never let it keep me from doing a single thing I wanted to do." -Georgia O'Keeffe
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