Inhale

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

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

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

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

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

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

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.