Re: I have been away fromthe list - my apologies!

[Guest guest]

lol, love you Lana-mom!

Jill

Re: I have been away fromthe list - my apologies!

WELCOME BACK QUEEN MOTHER! We've all missed you terribly! But

I'm so glad you took the time you needed to heal! Now don't go

overdoing everything and get yourself run down, OK?? I can tell you

this because I think I'm probably one of the older/oldest ones on the

list, so I'll just act like Mom! If you yell back at me, though,

please do it privately, unlike I did here! LOL!!!

Love you Jill!

Lana

[Guest guest]

lol, love you Lana-mom!

Jill

Re: I have been away fromthe list - my apologies!

WELCOME BACK QUEEN MOTHER! We've all missed you terribly! But

I'm so glad you took the time you needed to heal! Now don't go

overdoing everything and get yourself run down, OK?? I can tell you

this because I think I'm probably one of the older/oldest ones on the

list, so I'll just act like Mom! If you yell back at me, though,

please do it privately, unlike I did here! LOL!!!

Love you Jill!

Lana

[Guest guest]

lol, love you Lana-mom!

Jill

Re: I have been away fromthe list - my apologies!

WELCOME BACK QUEEN MOTHER! We've all missed you terribly! But

I'm so glad you took the time you needed to heal! Now don't go

overdoing everything and get yourself run down, OK?? I can tell you

this because I think I'm probably one of the older/oldest ones on the

list, so I'll just act like Mom! If you yell back at me, though,

please do it privately, unlike I did here! LOL!!!

Love you Jill!

Lana

[Guest guest]

Bernie;

I am so pleased that you are going to the NIH Bernie, this is great news. I

am sure you will find more answers there and hopefully, some recommendations

as well. Good good news!

Jill

[Guest guest]

Hi Jill

Yes, I am hopeful? Meaghan is booked for Sept 30, Oct 1, arriving on

Wed. the 29th and departing Oct. 2nd, having to stay over an extra night

as no available Hope Air Fight on the Fri. night. I am asking if any

CEDA members can suggest a Bed and Breakfast near the medical centre for

the Fri. night. I have often found that one can have a much more

pleasant and informative experience of the regular people by staying at

a bed and breakfast. Impersonal hotels don't do it for me and I am

hoping Meaghan will be well enough after the testing to see a small bit

of the town. Some exposure to Chesapeake Bay could give her a sense of

the location and the activity.

Dr. McDonnel very kindly and effectively advocated with Hope Air on her

behalf. I am anxious and so hopeful that Hope Air will also come

through for other Canadian members as I certainly think their need to be

seen is as great as Meaghan's.

Meaghan has had a number of the tests they are doing, Echo, Holter,

ECG's, but it is the raft of blood work and their expertise in

presenting and interpreting the whole picture that I am hopeful of

benefiting from. Body systems work in tandem and it is so frustrating to

have specialists seeming to work on only their piece of the pie. I am

absolutely certain the Cardiovascular problems greatly drive the GI

problems she has.

I am however mindful of the experience you related re Mayo so many, many

years ago. As always, it will be the follow-up care that we can access

on return that will be the proof of the pudding won't it?

I am overjoyed that Rhea is going to obtain comprehensive Tilt Table

testing with Dr. Morillo and her perseverance in getting there is

amazing. We have some true Olympians in this group. Their families are

to be commended for their efforts in providing support as I know first

hand what it requires. Saw Stacey's note and filled her in re best

approach and what it seemed was the criteria for Hope Air. Have not

heard back from her? My judgement is we are actually getting somewhere

with having HEDS acknowledged and treated.....what do you think? Am I

just dreaming or do you think NIA/NIH reports, assessments will add

weight and validity to HEDS and our predicament here in Canada? I am

actually feeling like I can now direct some of our Canadian members to

get real help.

Bernie

Re: I have been away fromthe list - my apologies!

Bernie;

I am so pleased that you are going to the NIH Bernie, this is great

news. I

am sure you will find more answers there and hopefully, some

recommendations

as well. Good good news!

Jill

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

[Guest guest]

Hi Jill

Yes, I am hopeful? Meaghan is booked for Sept 30, Oct 1, arriving on

Wed. the 29th and departing Oct. 2nd, having to stay over an extra night

as no available Hope Air Fight on the Fri. night. I am asking if any

CEDA members can suggest a Bed and Breakfast near the medical centre for

the Fri. night. I have often found that one can have a much more

pleasant and informative experience of the regular people by staying at

a bed and breakfast. Impersonal hotels don't do it for me and I am

hoping Meaghan will be well enough after the testing to see a small bit

of the town. Some exposure to Chesapeake Bay could give her a sense of

the location and the activity.

Dr. McDonnel very kindly and effectively advocated with Hope Air on her

behalf. I am anxious and so hopeful that Hope Air will also come

through for other Canadian members as I certainly think their need to be

seen is as great as Meaghan's.

Meaghan has had a number of the tests they are doing, Echo, Holter,

ECG's, but it is the raft of blood work and their expertise in

presenting and interpreting the whole picture that I am hopeful of

benefiting from. Body systems work in tandem and it is so frustrating to

have specialists seeming to work on only their piece of the pie. I am

absolutely certain the Cardiovascular problems greatly drive the GI

problems she has.

I am however mindful of the experience you related re Mayo so many, many

years ago. As always, it will be the follow-up care that we can access

on return that will be the proof of the pudding won't it?

I am overjoyed that Rhea is going to obtain comprehensive Tilt Table

testing with Dr. Morillo and her perseverance in getting there is

amazing. We have some true Olympians in this group. Their families are

to be commended for their efforts in providing support as I know first

hand what it requires. Saw Stacey's note and filled her in re best

approach and what it seemed was the criteria for Hope Air. Have not

heard back from her? My judgement is we are actually getting somewhere

with having HEDS acknowledged and treated.....what do you think? Am I

just dreaming or do you think NIA/NIH reports, assessments will add

weight and validity to HEDS and our predicament here in Canada? I am

actually feeling like I can now direct some of our Canadian members to

get real help.

Bernie

Re: I have been away fromthe list - my apologies!

Bernie;

I am so pleased that you are going to the NIH Bernie, this is great

news. I

am sure you will find more answers there and hopefully, some

recommendations

as well. Good good news!

Jill

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