Tag: Reiter’s Syndrome

I had a major freak out today

I had been building up to this.

i get this sense from people, and its not my paranoia (b/c others have confirmed it) that they think I am healthy, and or I am getting away with something. having my cake and eating it too. being on sick leave, but still being productive.

of course the whole effort to continue working as if i am normal is a classic defense mechanism. “if i can keep working, i will know i am okay.” or “if people keep seeing me release things, i won’t look weak or sick.”

it is so demoralizing to have that backfire so badly, as it seems to be right now. it is awful to have to prove how sick i am to someone. And of course, its impossible. Totally impossible. But there I was, on the phone, trying to explain every facet of how much pain and anxiety and discomfort and nausea I am in. I had to describe my mouth lesions, and the pain of eating. I had to explain that the lesions and joint pain from Reiter’s syndrome is the same pain that full-blown AIDS patients get. I had to rehearse the whole thing on the phone today. I had to prove my pain.

Part of the problem is that I am perceived as being productive, and therefore healthy. But my productivity is completely derived from my crew. All I do is make a few decisions here and there, stumble around scratching my legs, forget to take my drugs, and generally tire myself out and then go home exhausted. Okay, that’s a bit of an exaggeration, but the point is, its not me, its my crew. And *then* the conversation turns into jealousy and/or resentment that I have assistants.

O had a major intervention with me tonight. I had been realizing that I had a problem for a few weeks, but I had no idea what to do about it. I have such a hard time saying no. We worked through a lot of tactics and strategies.

I am writing to say I am scaling back. Drastically. I only have 12 more weeks. 8 1/2 until I go to portland to finish up the treatment.

I put an autoresponder on my email. If you write me, you will get it.

I am only going in to the studio one day a week, at most.

I am not going to start anything new. Nothing. And I am going to finish things that are more than 75% done.

I am going to stop releasing or publishing anything, as people seem to equate me releasing new work with me being healthy.

I am going to focus my energy on riding my bicycle, reading at the library, and meditating.

***

This is *so* hard to do. Partly write this here so you all understand what I am going through, and also so you know why i may not respond to email, and also to help support me and keep me in check.

Reiter’s Syndrome

I went to the dermatologist today.  Everything checked out fine.  All my moles are (still) normal.  All the new lesions are also normal, and have a name: Reiter’s Syndrome. And when it shows up the lesions are called psoriasis.  This includes the big lesions on my tongue. A quick google search reveals an academic paper linking Reiter’s Syndrome to IFN (that costs money, and arrives by mail?), and a Reagan era NYTimes article discussing AIDS and Reiter’s syndrome.  It is unclear to me how much of this science is still accurate (it was 1987, and they didn’t really know that much about HIV/AIDS) but they argue that HIV suppresses one part of the immune system and allows the other part (the Interferons) to flourish:

”AIDS patients have high levels of interferon and it is known that when we give interferon to patients with cancer they develop psoriasis,” Dr. Winchester said. ”It is possible that high levels of interferon may induce both psoriasis and Reiter’s syndrome.”

The presence of Interferon, whether as a result of HIV/AIDS or a result of Interferon treatment, results in a psoriasis and Reiter’s syndrome.

I don’t have HIV/AIDS, but I do have one of the most common side effects of the disease, because the two share the same mechanism – interferon.