spinachcrazyhotel

Inhale

spinachcrazyhotel — Tue, 17 Jan 2012 01:04:32 +0000

4mg prednisone en route to 0, then back to midwest for more tests. So hard, not doing anything. 3mg on Jan22nd, 2mg on Feb 5th, 1mg on Feb 19th, 0mg on ~March 5th

spinachcrazyhotel — Mon, 31 Oct 2011 00:38:10 +0000

Doing amazingly well. Down to 16mg of Prednisone.

After pulse (3 days of 250mg Solumedrol), took:

40mg – 40mg – 30mg – 30mg – 20mg – 20mg – 18mg – 16mg

If still feeling sharp tomorrow morning will take 14mg steroids (pred) and quickly get back down to 12.

Diet clearly has some hand in all of this madness. Suspected – meat, dairy, wheat.

For now, rice and beans mostly, coffee.

[inhale, exhale]

Pulsed – pause – proceed

spinachcrazyhotel — Tue, 25 Oct 2011 17:01:01 +0000

3 days pulsed with IV solumedrol -

Felt amazing for a minute – fell to earth for a minute
Ate anything and everything for a minute

Think that diet has some role in the process but is clearly not the entire picture
After eating all kinds of meat, gluten, and everything else – felt awful despite 750 mg solumedrol in my system

perhaps the food sensitivity is via some sort of inflammatory gut problem – some anca associated GI problem setting off the neurological autoimmune cascade.

i try to sleep

spinachcrazyhotel — Thu, 20 Oct 2011 12:59:07 +0000

i fail
important that i succeed
tomorrow get (ste)roid pulsed

how i want to just be ok already
even just for a few weeks to be able to walk around

and be present and just see around me
and think about what i want to do

what i want done to me

my everything tires

Dilemma

spinachcrazyhotel — Wed, 19 Oct 2011 17:26:12 +0000

The problem is that killing myself requires a wherewithal that I don’t have when in a sufficiently bad relapse that I want to die. Once I feel well enough that I could accomplish the feat, I’m not longer so keen on executing it.

But, God, I want to die.

Deep Breath, regroup

spinachcrazyhotel — Wed, 12 Oct 2011 01:15:56 +0000

burned out. probably the reduced steroid dose.

flared out.

it was ugly.

[Deep Breath]

took pulse of 30mg steorids today and will continue 30-30-30-25-25-25-20-20-20-15-15-15 and then play it by ear.

[Deep Breath]

4th day complete, not perfect, but strong

spinachcrazyhotel — Fri, 30 Sep 2011 05:54:50 +0000

4th day complete at 11mg seem to have taken without provoking an insane fever.

today’s diet – vegan gluten free, soy free

ate bananas, apples, string beans, pine nuts, almonds, etc. craisins, raisins, avocado, quinoa, olive oil, lemon juice. doing alright.

not perfect, some things a little off, had some fasciculations in right leg. but overall, at 11mg steroids without incident.

Sleep, Flare Equation

spinachcrazyhotel — Thu, 29 Sep 2011 03:56:18 +0000

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!

spinachcrazyhotel — Wed, 28 Sep 2011 22:41:08 +0000

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.

Tagged: Arugula, Autoimmune, Autoimmune Encephalopathy, diet, Fruit, Health, Nutrition, Prednisone, Quinoa

Pred 11

spinachcrazyhotel — Wed, 28 Sep 2011 05:31:06 +0000

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.