Monday, February 29, 2016
And just like that...
I swear, TSW is the most unpredictable, frustrating journey. I just wanted to post this quick update to remind MYSELF that no matter how bad I flare, it WILL end. My skin is now better than its been maybe throughout this entire process. I feel like it could heal very quickly if it wanted to. Of course, I know I'll flare again but thank god for this period of calm!! My skin is still dry and flakey but very little pain and has thinned out all over. No NEW irritations. Now, do I even bother with the cyclosporine?? I'm going to get the prescription anyway to hold on to. Hang in there people!!
Thursday, February 25, 2016
Month 27
Wow. 26 months of TSW done. Today is day one of month 27. I haven't updated in a while as I have been fed up. Flaring like crazy. I couldn't even tell you how many times I think to myself "I'm so sick of this shit" and "I don't want to do this anymore" a day. It is so draining to be uncomfortable, in pain, itchy and stingy day in and day out. My functionality has decreased again. I can no longer take my son to school or his activities. These last bouts of flares have knocked me on my ass. Let me recap.
My last update was around my 2 year anniversary. I recall having flared pretty badly leading up to that as well. Then it calmed. Then I flared as if I was in the very beginning again. I'm talking full body rashes, bone deep itch and OOZING. Not just a light ooze, as often happens on my face if I scratch too much. But a nonstop, disgusting, drippy mess. On my head (neck and ears too). DISGUSTING. I AM SO SICK OF THIS SHIT. Oozing is the absolute worst. Im back to using ice packs and wrapping a scarf around my neck to protect it from the wind. The head ooze has mostly dried up but now my entire scalp is itchy as fuck with huge flakes and dead skin coming off. Which makes it even more gross, and even more difficult to leave alone for a picker like myself. Due to this latest flare, I made an appointment with a dermatologist. Can you believe it?! I reached out to Dr Rapaport and he wants me on Cyclosporine. I swore to myself I would NEVER take it or anything of the like but I am so so so so tired. Tired of being sick and tired. So...I am going to see the doctor today and will ask for a prescription for it. The side effects are scary. Like cancer causing scary. But I'm only going to hop on it for like 2-3 months so hopefully the short usage will protect me from the very dangerous side effects. There was a study done in which half of all the eczema patients using cyclosporine went into remission. SO..I'm secretly hoping that it will shut off the immune response that seems to be prevalent in TSW.
I did a nutritional reset called The Whole 30. I don't think it had much of an impact on my skin, if any. What has had more of an impact (I think) is my recent supplement intake. I saw a new functional medicine dr and am taking a bunch of new supplements for stuff I'm deficient in. Within a few weeks of taking it consistently, I started oozing. Healing crisis??? I don't know. So while the goal is to be drug free, I'm going to follow Dr. Rapaports prescribed treatment and hope I don't end up regretting it. I have a feeling this is going to be a longer journey than I originally anticipated. Pictures below.
My last update was around my 2 year anniversary. I recall having flared pretty badly leading up to that as well. Then it calmed. Then I flared as if I was in the very beginning again. I'm talking full body rashes, bone deep itch and OOZING. Not just a light ooze, as often happens on my face if I scratch too much. But a nonstop, disgusting, drippy mess. On my head (neck and ears too). DISGUSTING. I AM SO SICK OF THIS SHIT. Oozing is the absolute worst. Im back to using ice packs and wrapping a scarf around my neck to protect it from the wind. The head ooze has mostly dried up but now my entire scalp is itchy as fuck with huge flakes and dead skin coming off. Which makes it even more gross, and even more difficult to leave alone for a picker like myself. Due to this latest flare, I made an appointment with a dermatologist. Can you believe it?! I reached out to Dr Rapaport and he wants me on Cyclosporine. I swore to myself I would NEVER take it or anything of the like but I am so so so so tired. Tired of being sick and tired. So...I am going to see the doctor today and will ask for a prescription for it. The side effects are scary. Like cancer causing scary. But I'm only going to hop on it for like 2-3 months so hopefully the short usage will protect me from the very dangerous side effects. There was a study done in which half of all the eczema patients using cyclosporine went into remission. SO..I'm secretly hoping that it will shut off the immune response that seems to be prevalent in TSW.
I did a nutritional reset called The Whole 30. I don't think it had much of an impact on my skin, if any. What has had more of an impact (I think) is my recent supplement intake. I saw a new functional medicine dr and am taking a bunch of new supplements for stuff I'm deficient in. Within a few weeks of taking it consistently, I started oozing. Healing crisis??? I don't know. So while the goal is to be drug free, I'm going to follow Dr. Rapaports prescribed treatment and hope I don't end up regretting it. I have a feeling this is going to be a longer journey than I originally anticipated. Pictures below.
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