Sleep, Flare Equation

Made it to midnight without crashing.  Going to try to sleep soon, shouldn’t push it.  Might have stuck this landing.  Expecting the side effect situation at 11mg to be much friendlier than at 12.  Amazingly, food does seem to have a lot of influence in the flare equation.

current theory on my condition’s behavior

y = f(d,p, l)

y = probability of a flare

d = dietery factors

p = pharmaceutical drugs

l = other lifestyle factors

this equation (whatever it may be) might also be subject to change over time – 10 years ago, for example, nothing caused a flare.

11 and fine!

Astonishing.

Still at 11mg of prednisone.  If all there was to this story was autoimmune disease kept at bay by horrific drugs, you’d expect me to be crashing now on the third day of a serious dose reduction.

But, I feel dramatically more lucid today and even have considerable energy at 7pm.  And the only thing I’m doing differently is eating.  Primarily just fruit, arugula, quinoa and olive oil.  Eventually, even if diet proves instrumental, I’ll need a slightly more diverse diet, and greater protein intake.

But, for now, I’m starting to believe in diet again.

Pred 11

I think I’m going to be ok. I crashed hard from 6pm to 10:30. But, considering the fatigue, I feel lucid. I’m committing for now to this diet, and to 11mg prednisone dose.

Ack! Get the Popo off my Back! Soy-free Gluten-free Vegan Day2

SO flustered.

The first day at 11mg went so much better than I could have hoped for.  I had energy throughout the day.  Perhaps this diet thing really does have an impact.  Who can say how why, but it was a much better day than it might have been given how I’ve reacted at other times after withdrawing steroids.  Yet my morning is still sooo fucked up.

I tried to go to sleep at midnight and failed.  Finally forced my wretched body into slumber at 2am only to wake up at 4am, in pain from acid reflux (which I normally only have on super high doses of steroids, not when in withdrawal!) and full of energy.  After a few hours of writing essays, ranting into my video blog and being productive, I passed out at 730, slept through my 830 alarm and got a $65 dollar ticket for not moving my car according to the alternate side street cleaning rules.

So fucking frustrated.  Yes, I’m a dying wretch and shouldn’t be so flustered by street cleaning.  But fucking hell, street cleaning!

OK deep breath.

Day 2

Let’s stick with it and continue to test this diet.  Staying soy-free gluten-free vegan. Staying at 11mg prednisone.

Food

I can never decide what effect, if any, food has on my condition.  At times I’m convinced that food has a profound impact on whether I’m in a flare or remission, but at other times, it seems to have no bearing at all.

Still the turning point in my latest prolonged period of recovery (since March) occurred when I became vegan.  Since then I’ve bounced through the entire spectrum of vegetarianism, from vegan to pescetarian.  For a short burst, I’ve even reverted to ravenously carnivorous eating habits, but I’ve generally associated these periods with more frequent and severe flare-ups.

Today, alarmed by some side effects of the corticosteroids I’ve decreased my dosage of prednisone to 11 milligrams (had been 12mg for the previous 2 months).  Naturally, looking to offset the increased susceptibility to an autoimmune flare-up, I’m vigilantly exercising any lifestyle levers that I even suspect might confer a beneficial effect on my condition.

For now I’m gluten-free soy-free whole-food vegan.  It sounds horribly restrictive.  But at times of such uncertainty I find a comfort in extreme restriction.  The discipline of fasting gives me a sense of control over my body, in contrast to my usual feeling of lacking agency.

Thank God for coffee.

So Nice

Great hang with an awesome bassist, fun rehearsal, dinner with musicians with brains, a attended startling great concert, and then hung with some truly smart jazz musicians.  People with brains, and wit.

Yesterday’s bitterness is sliding away.

Ugh, Jazz Musicians

Every time I begin to have a little more faith in the intelligence of jazz musicians, it’s quickly shattered by an interaction with a meat-head.

Tonight a certain white lumpy middle-aged saxophonist who can’t really play through harmony, and is incapable of conversing intelligently about anything gave me shit for trying to hook him up with a gig.

I take 2 chemo drugs, encounter more needles than heroin junky, and take 12 pills a day just to get through and stay in this sort-of kind-of remission –  and I had to hear the sob-story of this guy who ‘already emailed a band’.