RE: Thanks for asking... Back to Mark

[Guest guest]

I thought so!

Hang in there!

It is hard to hear about good health care when it is so close yet so far at

the same time. I understand you need to know. It is a good thing and can

help us with the future.

I felt that way too. but just at first and fortunately I have been on the

good end of healthcare with no one saying " no " to my requests. It has not

been cheap, a huge deductible, 30% of what is not covered and no partner to

help with the expense of it all . But having the necessary tests to rule out

and diagnosis the really basic and some bad stuff I have is enough for me..

Since I have lived my life (and fortunately had a great many symptoms of EDS

during that time even though I didn't know about EDS ) I am pretty prepared

for what may continue to come my way. More of the same I am sure and to a

greater degree as I age, as with anyone not just EDS. For me, I don't have

that great need to know more than I already know, or what I can learn from

others. But that is just me and that is what makes the world go round!

Huh?!

If you do get in the study, take full advantage of it and soak up as much as

you can for your future and for us too. You write so beautifully perhaps

you can really help all of us to understand the more technical issues that

are very difficult for us to grasp.

I hope your sprits rise in the anticipation that good care is in your

future.

Best of wishes.

Debbi

Thanks for asking...

....I'm, well, OK. Not a particularly good time right now, but it'll pass, I

hope. Like many of us, I've applied to NIH. The list of tests opened my eyes

to

how absolutely rotten my medical care has been -- I mean, of the test list,

I've only had DEXA done, and that only because I was SURE I had osteoporosis

and screamed loud enough to get it. No one's bothered to try genetic testing

to

try to classify my type, no one's bothered to schedule an echogram (despite

my

asking), nothing -- not one doctor in the public health system of this, the

fourth largest US city wants to take on my EDS....so on top of not feeling

great (in many areas) I'm faced with the realization that I've only been

marginally cared for these four years since diagnosis. I don't care anymore

if anyone

can do anything about them, they keep telling me they can't and I believe

them

-- I just would like to know ALL the problems I face, and which I don't....

Mark