Re: I can't stand it anymore!

[Guest guest]

Oh , I am so sorry that you are feeling so sore and down

tonight - wish I cold give you a great big proper hug. I really

don't know what to say about the NIH situation, that really is a

pain how long things are dragging on...and it's doubly annoying when

other things are hanging on those results too. I can sure understand

your frustration Darl.

As for the county, I'm not sure how things work over there but I was

wondering if one of your doctors, maybe a GP, surgeon or even the

NIH guys could write a letter explaining your physical and emotional

condition due your EDS and whether that would give you some leniency

and possibly even some allowances and assistance in maintaining

things to the levels they expect? It's just a thought but it might

be worth a try.

Hang in there and please know that all your family is here for

you always. Thinking of you and keeping you in my thoughts and

prayers.

Love and hugs....Jo

xxx

[Guest guest]

Hang in there ,

Have you considered calling Byers and asking him for his opinion on

what the NIH is telling you about the growth of the cells? I ask because

someone up here had her samples sent to Dr. Byers and was being told the

same thing, after 6 months though, with no news forthcoming from the doctor

who said he sent the sample to Dr. Byers, she called the lab herself only to

find the sample was never sent, the doctor here thought he could test for

VEDS himself and used her sample as a trial. I know the NIH is doing the

tests correctly, but having someone else look into it may not be a bad idea.

I mean, enough is enough, eh?

Jill

[Guest guest]

Hang in there ,

Have you considered calling Byers and asking him for his opinion on

what the NIH is telling you about the growth of the cells? I ask because

someone up here had her samples sent to Dr. Byers and was being told the

same thing, after 6 months though, with no news forthcoming from the doctor

who said he sent the sample to Dr. Byers, she called the lab herself only to

find the sample was never sent, the doctor here thought he could test for

VEDS himself and used her sample as a trial. I know the NIH is doing the

tests correctly, but having someone else look into it may not be a bad idea.

I mean, enough is enough, eh?

Jill

[Guest guest]

--

I do hope that things get better for you. It must be so aggravating to wait so

long on an answer from the NIH. Maybe they should try a second sample to see if

maybe those cells would grow faster???

Please hang in there - it will eventually get better. As far as that " Darn

County " -- maybe they should get off their duffs and help you out ----- duh,

what a novel idea - government actually doing something to help!!! Well, I

guess we can only hope.

If I can help in anyway, just let me know.

Love, Patti

I can't stand it anymore!

Hi all my Family!

I just can't stand it anymore! I need to vent again. Why does it

take so darn long to get my results back from NIH? I ask them and my

cells are growing to slowly, this has been going on since Jan 8th of

this year. My Orthopeadic Suregeon won't fix anything else on me

until I get the results back. I'm tired of hurting, there's no end

to it all.We all just suffer! The Darn County as I said before has

come down on me, I have owned my home since 1983. Now it has to be

painted, porch replaced, steps replaced, sidewalk replaced. I used

to be Hariot Home Owner and fixed everything myself. Now I can't do

it even though I want to try. My Husband has let things slide. He's

not interested in these things. He has ADD and is addicted to some

substances, his heart is in the right place but his mind is

somewhere else. He just started to get treatment. I hope to God it

helps! I'm not much better, I've let Beer take over my life. No

excuses, though I could give you many. I love you all, there is no-

one to talk to except Cindy C.

Sincerely,

S.

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