Some Recent Accomplishments

[Guest guest]

Good morning, I & I,

I wanted to let the group know that there have been recent

accomplishments which may clear the way for better progress in the

near future.

Here's a schedule of current appointments:

Lumbar Puncture Completed: May 23

ER visit with massive clonus, diazepam prescribed: May 25

Evoked Potentials at UCSF: May 31

New PCP 1st meeting: June 3

Pain Clinic Counseling: June 6

Nuclear Brain Scan: June 7

Consult with 2nd Lyme specialist: June 30

Sometime in that month of activity there will be PICC insertion and

IV antibiotic treatment will begin. The prescription has gone to a

local company that provides infusion services. They will issue a

Treatment Authorization Request (TAR) which we expect to be

approved.

Once approval is given they will assist with arrangements for PICC

insertion and then make weekly nursing visits to inspect line and

make sure I'm doing ok with it.

There will also be a follow-up with neurologist at some point, that

should be scheduled next week.

All tracking of these things and negotiations with MediCal HMO have

been delegated to family members, since I cannot manage any longer.

Of course, things fall through the cracks, and yesterday I came home

from an accupuncture appointment with 7 urgent sounding phone

messages. But it turned out I could ignore each and everyone one,

someone else had already taken action on my behalf.

For the first time, everything does not rest on my shoulders. Hard

to put in words what that means to me.

The new PCP is a singular victory - a compromise solution reached

with my MediCal HMO, who agreed to brief him in advance of our first

appointment, and advise him that urgent procedures were needed. He

hasn't seen me yet, but has already signed off on a very expensive

nuclear medicine scan of my brain to be performed by the center Dr.

Stricker uses in San Francisco.

So yeah, I'm very sick and afraid of dying. But my story is not just

a 'downer', it is also a testament to how much can be done even in

really difficult circumstances.

My determination to survive this illness has never been stronger.

Whether I do or not, I am proud of what has been accomplished and

supremely grateful to all the people in my local and internet life

who have helped me make it to this stage. That includes the members

of this list.

Thank you.