I went up to the dr yesterday, and got my FMLA papers signed.
The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things. I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t. He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.” And I immediately went into a full blown dysesthesia attack. its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake. In a healthier state, I could have had it roll off my back. But not now. The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land. Which is why it is close to impossible for me to teach on the IFN. I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.
So in a sense it was perfect timing. He actually got to see it happen. And see that it was real. (Maybe my subconscious produced it for him…) He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break. But I dont want to take a break. It just will delay the overall end point. I only want to take a break if I’m too sick to take the drugs. RIght now my WBC is at 2.5, and holding steady there. It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise. 3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.
If the goal was to get drugs, that was a success. He gave me a prescription for Atarax which is an antihistamine. Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy. I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain. Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.
The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed. My “doctor’s note” so to speak.
We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009. But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break. So realistically, we’re talking an end of August beginning of September final injection. As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September. E.G. October 1st. I will more or less miss the first 5 weeks of the semester. I’m working out the details of what that means. sitting w/ my dr and counting out when I would be done forced all of this. frankly i was very much in denial of the end date. it seems so far away, i felt better not thinking about it. but because it runs up against the fall semester, it is important to address
