Note from (Lonestar Rose)

[Guest guest]

I wrote to Sis yesterday and this is what I got back...............

Subject: RE: EDS National Conference - Important

Dear Sis,

My computer is dying--all kinds of weird errors and won't let me even open

some programs. Today is the first time it's allowed me to see my email, and

it (page) even looks strange. Lennie says my computer is going to have to

be reformatted and everything reloaded. It's been doing this since

did our income tax return on it, but it was running sloooooooow before that,

too.

I still cannot give a definite answer ( ) about the conference. I saw

my ortho day before yesterday, and it isn't good. Plain old xrays showed

that I now no longer have any disc between c-3 anc c-4 upon views taken with

both flexion and extension, and have now also formed a new spur on c-3 which

is causing additional pain. (as well as c-6 and t-1). Entire anterior

fusion of c-spine is recommended. I have requested to just please help me

to mask the pain until after school is out before having a cervical

myleogram, nerve conduction testing, and surgery. I am only able to achieve

any level of comfort when lying down. He increased the frequency of my pain

meds, and also is sending me to another pain management specialist in Dallas

in the interim to see what might be ADDED to my pain med daily regimin.

I've been advised to take it very easy, which I pretty much have been. HOW

IS YOUR NECK??????

is ok....graduallly getting better physically after surgery. But his

graduation prospects are in jeopardy due to missing so much school and so

many assignments piled up (which must be made up, all while keeping up with

current assignments) while ill/recovering. He only has about 4 1/2 weeks in

which to accomplish this literal miracle. We meet Monday morning with his

teachers to see exactly where we stand and if it's even doable. It will

just crush him (and me) if he doesn't get to graduate as planned. We have

the invitations, the cap and gown, the class ring....everything. Because he

is considered Special Ed (Other Health Impaired) due to his many physical

problems, the law may allow and even require the school to cut him more

slack than a regular student. I know those laws very well, and I won't

hesitate to enumerate them for the committee if necessary.

Please post to the CEDA list for me, as I cannot depend on my computer until

Lennie has time to rebuild it. He is flying to Omaha this weekend for his

nephew's first communion (called The Holy Eucharist in the Catholic church)

in Sioux City. I must stay at home to conserve my strength.

I did hear from the NIH in Baltimore. The boys and I have appts. with Dr.

Francomano in June for 2-3 days of being " lab rats " for the connective

tissue study. I was told it would include MRI's, bone scans, blood samples,

etc. I only want good for other EDSers and future EDSers to come out of it.

If that happens, then I am happy.

Love,

Sis

~LoneStarRose~

(~~)

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