Re: Barium result and Prof date

August 25, 2004

Jo, I'm sorry you have more to deal with! My Mom had the hiatus

hernia - she had it repaird a couple years ago.

I agree, you need to cling to the fact that knowledge is power, and

in knowing what you're fighting, it will help. I think that's what

MOST of us are counting on in going to NIH - I know I am!

Right now, Jo, you NEED to come to us for support, and that's why

we're here for each other! Luckily, we all have that need at

somewhat different times, so at least some of us are available and

more able to support others at different times. It's wonderful that

we have each other to lean on during our weaker times - it helps to

make us stronger.

I'm anxious for you to go as well, and I fully believe that with the

gifts God has given you, he will not yank the carpet out from under

you - you're too important to many people and have too much to share.

Until your visit with the Prof, please take good care of YOU!

Love Lana

> It's crazy but I'm actually desperate to get my full assessments

> with Prof, but also rather worried about what else they will find

> out in the process too. I am so tired of my body falling apart, but

> at least I will know what I'm fighting I guess. Knowledge is power

I

> was told recently and I have to cling to that right now as I am

> completely exhausted from the decline in my health lately. I need

> some hope to hold on to and right now that is being focused on my

> stay with Prof....I only pray it's not a misplaced hope. Thanks for

> your support, friendship and encouragement - I couldn't get through

> any of this without you.

August 26, 2004

Hi Jo:

Am soooo glad you now have a date for your stay with Prof. How many days

will you be there. Since it seems you are staying more than one it will

give them a good opportunity to get the whole picture. Have you done

net research on Prof. Bird? Is Leeds in Scotland perchance?

I also relate to your wanting to find out and at the same time being

afraid of " what " they will find. What ever is found, he should be able

to provide strategies and poss. meds to help. Understanding causes has

always helped us tremendously.

Re the Hiatus hernia and oesophageal valve. In the files section of the

CEDA site is a great way to alleviate heartburn caused by the

oesophageal valve not closing. Meaghan was having lots of nighttime

waking with heartburn and she uses this method effectively. Also, she

has been certain to drink lots of fluid with her nighttime med. and even

some yogurt. She was also having food come up into her mouth after

meals and uses it them as well.

Hang in there girl! ! We need you around.

Hugs, Bernie

Barium result and Prof date

Got another phone call from my GP this morning with the results of

my recent barium swallow, they show that I have a hiatus hernia and

problems with my oesophageal valve. Hmm, another day, another

ailment to add to my growing list. Urgh, I can't believe in the

space of 24 hours I've been diagnosed with two more conditions more

associated with people a lot older than I am. My GP has changed my

meds to try and give me a little more relief from my gastro

symptoms, until I see Prof and we decide on my treatment plan.

Talking of my stay with Prof, I spoke with the admission clerk today

and have a provisional date for 5th September. It will be confirmed

next week, but is pretty certain. I can't believe it's only just

over a week away now after months of waiting and delaying because of

my surgery and injuries. I am a little anxious as I just don't know

what to expect or what is going to happen, but I'm calmer than I

expected to be. Doubt I'll be able to say the same thing this time

next week though! Can you say nervous wreck?? ;-)

It's crazy but I'm actually desperate to get my full assessments

with Prof, but also rather worried about what else they will find

out in the process too. I am so tired of my body falling apart, but

at least I will know what I'm fighting I guess. Knowledge is power I

was told recently and I have to cling to that right now as I am

completely exhausted from the decline in my health lately. I need

some hope to hold on to and right now that is being focused on my

stay with Prof....I only pray it's not a misplaced hope. Thanks for

your support, friendship and encouragement - I couldn't get through

any of this without you.

Love and hugs.....Jo

xxx

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

August 26, 2004