Update: Second Flare

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Right at 9 1/2 months. Things aren’t as great as they could be. Itchiness has gotten a lot worse, so I’ve gone back to antihistamines. I’ve tried taking natural alternatives to help with the itchies, but it just hasn’t helped recently. I’m grateful that it’s manageable enough so that I don’t have to excuse myself all the time from what I’m doing, but I’ve caught myself scratching in front of co-workers.

It seems better that this flare has crept up on me instead of happening abruptly. Flaring out of nowhere could put one in panic mode. It could dissipate fairly quickly or stay for a while. My nerves have been firing all night and day. I’ve gotten better at not scratching every time I feel itchy. I woke up last night in a scratching frenzy trying to calm down, though K was very patient and sweet calming me down before we both fell asleep.

I’m okay with the fact no one at work has asked me about the way my skin looks and I think I’d like it to stay that way. My neck is covered with a scarf everyday, though my face and hands show signs of “eczema.” I’ve been asked by family, “How is your skin?” though this question seems both bother me and satisfy me simultaneously. Satisfies me because it’s a genuine question. Bothers me because it’s deeper-down than skin. It’s the internal physical damage that steroids have caused and more than just my skin. But no one’s really going to ask us, “How are your adrenals doing?” though there’s no measuring it without medical support and well, it just sounds plain silly!

I’ve retorted, “It’s steroid withdrawal!” when K has mistakenly asked me how’s my eczema doing. He’s voiced some doubts about what I’m going through. Somehow that hurts a little, but he trusts me at the end of the day. How is that all TSW’ers are going through the same thing? The the intense itching, the weaker-than-paper elephant skin, the oozing, the hair loss… Either we’re all crazy or there’s something to it. We have examples of HEALED red-skinners, who have gone through the same shit we’re going through, but are now living perfectly normal lives now. Dr. Rapaport has helped hundreds and hundreds of patients heal from what other doctors thought was just plain old eczema. Steroids never truly solved “the problem” to begin with.

I’m not about to accept that what I’m experiencing is eczema. Shit NEVER got this bad until I started Clobestol (and even worse when I got off it.  Ever. Clobestol was only first used to fix a tiny itty bitty rash.  The jump from itty bitty rash to full body rash is a more than a stretch of logic. I don’t have an autoimmune disease and I don’t have “hidden” food allergies.

I was itchy but NEVER to the extent that I’ve experienced during withdrawal… All day long with immense intensity. My skin never just fell apart after scratching even a little bit. We’ve all ended up at ITSAN for a reason. Because the medical advice we’ve been following hasn’t given us solid answers. Why is it that our skin has turned a hyper-sensitive, itchy, oozy… scratch post? I could respect some of work that Western doctors do. They are well-trained advocates of medicine. Ha.

And so… I meet my second flare. The paper-thin skin, the liquid gold sapping from my insides, the organ-deep itching. Bring it on. And from this, I will be healed.

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