Fesability of doing NIH study trip alone

[Guest guest]

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

[Guest guest]

Yes Rhea, you can do it. I will write you at home.

Cindylouwho

Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

[Guest guest]

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Hi Rhea

Ive been debating this option myself. Anytime I bring it up with my

mom I get the " I dont see anyway that you could do it " even though

she was the one wanting me to take the first week off school for my

wisdom teeth. I will have to figure out plane fare and that stuff

but just maybe we would be able to work things out and maybe cut

some costs (If they will take two people in the study at a time).

Which airline would you be interested in taking? Maybe if we could

both leave from Toronto or something like that?

Stacey

[Guest guest]

I'm actually glad you sent it to the list by mistake, because the

email answered some questions I had too! So, thanks!

> Opps I meant for that last one to go to Rhea at home. sorry.

> Cindylouwho

>

[Guest guest]

Hey Stacey,

It would be so much nicer if we could do it together, you know

for 'moral support' and just not being 'alone' during such a big

journey, but I don't know if it's possible at all.

The only way I can do this is if I can get a free flight there and

back through a charity. Someone put up a great list on several

charities that will fly Canadians for medical stuff (including

research studies!!!!) for free provided they meet the criteria, and I

know there is the possibility of being eligible for it. If the study

would take us at the same time and if the charitable flights approve

both of us, I'm sure they would be able to work out flying us there

together. Then we could split cab fair too :-)

I would feel *much* better to be doing it with someone, but who knows

if we can work that out or not. It all " depends " I guess, but it

sounds like a great idea!

Big (((HUGS)))

-Rhea

PS. Well, your Mom isn't the one dealing with the problems in your

body or the school studies you are doing. :-X It would be 3 days in

total (one of travel, two of tests etcs..) and you'd probably need a

day or two to recover. That's like the length of time one may take

off for a really bad flu bug. I just keep getting the feeling that

this just sounds like a once in the life time chance, especially for

us since we don't normally have access to such good, EDS knowlegeable

doctors!

[Guest guest]

In a message dated 8/23/2004 12:48:11 PM Pacific Standard Time,

c-clark05@... writes:

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Actually I appreciate that info also! Gives me an idea of who to call and

what to expect to pay for the ground transportation. Is December the soonest

they are now scheduling appointments? I'll be doing pre-op work for hip surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

[Guest guest]

In a message dated 8/23/2004 12:48:11 PM Pacific Standard Time,

c-clark05@... writes:

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Actually I appreciate that info also! Gives me an idea of who to call and

what to expect to pay for the ground transportation. Is December the soonest

they are now scheduling appointments? I'll be doing pre-op work for hip surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

[Guest guest]

In a message dated 8/23/2004 6:11:05 PM Pacific Standard Time,

jetskideb@... writes:

Liza~~

What kind of hip surgery are you having?

Debbi

Total Hip Replacement, both joint and socket....right side. Apparently the

" you're just old " pain in groin & knee for 15 years was from the bones of the

leg trying to fuse themselves into what's left of the pelvis. Four doctors in

15 years missed it....5th one watched me hobble into his office and spotted it

as hip involvement at once. Many have refused to touch this case with the

severity of the bone damage and the EDS combined, but I found a wonderful ortho

recently who believes in all the alternatives I've used over the years and is

ready to FIX me for good!

[Guest guest]

In a message dated 8/24/2004 5:11:16 AM Pacific Standard Time,

c-clark05@... writes:

I know we met in NY. Are you the pretty blonde in the elec. chair?

Cindylouwho

You might be thinking of Gretchen...she had long hair and an actual power

chair. I was shorter, short blond hair, accompanied by a reheaded teen and was

either using one crutch or a smaller scooter towards the end (after attempting

to walk ALL over Niagra Falls, LOL). I know I met a couple of Cindy's....and

am still trying to match up the online ones with the in-person ones!