Hi C. and to all of my CEDA friends

January 7, 2004

Hi C. and to all of my CEDA friends,

What I am about to say may sound like I am being mean or rude but this is not my

intentions it is my hope to pass on a good message. So please just hear me out.

, I can just imagine that is feeling down to start off with

having a pain in the butt (literally) sucks and I think that I have full

authority to speak on this matter. However to be missing school and the

interactions with his teachers, friends and peers is a crucial thing to ones

self-esteem, self-worth and happiness levels. Like I said having the tailbone

injury sucks big time but I went to school every single day when my tailbone was

in such agony and we didn't know why. Low and behold the tailbone was curved

inwards at more than a 90 degree angle and ended up having to have the tailbone

removed. NOW THAT IS PAIN!!!! But not even six weeks later I was back at

school with my stupid little foam cushion (and yes it opened me up to some

teasing) but I did it because I missed my friends and that interaction. I think

should be going to school. You never know, just being back at school and

with his friends and staying on top of his homework may keep his mind

pre-occupied and he'll forget about some of the pain. And in all honesty I

think it is a bit much to be off school since mid October for a tailbone injury

because what is the school going to do if he has to miss school for another more

critical health matter, they are going to be less and less supportive if you are

keeping him home for more trivial things.

Now you all say, how could I say these things well I have changed a bit over the

years. I don't know exactly what I would call it, a life changing experience, a

newer and better (at least I think) out look on things whatever you want to call

it, that is beside the point. There are so many points that I wish to express

and firmly believe in like

~The Happier you are The Healthier you are

~I have EDS, EDS DOES NOT HAVE ME

~You only have one chance at this life time so go out there and enjoy it.

We are consistently putting ourselves or our children into this little

protective " bubbles " but for what??? If something is going to happen it will

happen one way or another. So I figure if my shoulder is going to pop out I

would much rather it pop out while I was doing something I enjoyed than for a

really stupid reason. For example I rollerblade (yup it is hard on the body but

you have to weigh the consequences and to me its worth it) and one time I was

out and boom I was on the concrete and my shoulder was out so I had to pick

myself up and rollerblade the rest of the way home and then took care of it from

there. After that when I was in a sling for a couple days and people asked me

what happened I said it proudly I was rollerblading. Another example is my

return to university. I finally came to the realization that if I kept putting

university off until I was perfectly fine it was never going to happen. And now

I have started my second semester and have obtained excellent grades for the

first semester.

Unfortunately with EDS things are going to happen but you just have to continue

on with your life. I look up to one of my heroes who I unfortunately lost in

October. She was only 39 years old and I truly believe that beside the angel in

the dictionary should be her picture. She couldn't have been more of a kind,

loving, caring person. Sadly she suffered with Diabetes from the time she was

18. I won't go into the long details of her suffering but it was bad and she

was legally blind and had to rely on everyone. BUT Not once did she ever

complain, or say " why me? " instead she was always asking how I was doing or

anyone else. She never missed sending a birthday card to everyone on her

mailing list, except one year for me when she was critically ill in the hospital

and as soon as she got out she phoned me to apologize profusely. If there was

anything she could do for anyone she would do it. And to me I think she had the

BEST outlook on life and I think we should all take a minute, step back and

re-evaluate.

I'll end this now. But I'll leave you with one final thought...try bursting

that " bubble " and going out and experiencing life to its fullest.

Jeff

" life is an adventure; enjoy the journey through it "

January 7, 2004

Hi Jeff --

I have two mottos I try to live by --

" If you're not living on the edge, you're taking up too much space " and

" Sometimes you just have to take the leap, and build your wings on the way

down " .

And you are so right -- life is an adventure and to be able to enjoy it is the

best gift you and give yourself.

Patti

Hi C. and to all of my CEDA friends

I'll end this now. But I'll leave you with one final thought...try bursting

that " bubble " and going out and experiencing life to its fullest.

Jeff

" life is an adventure; enjoy the journey through it "

January 7, 2004

Hi Jeff --

I have two mottos I try to live by --

" If you're not living on the edge, you're taking up too much space " and

" Sometimes you just have to take the leap, and build your wings on the way

down " .

And you are so right -- life is an adventure and to be able to enjoy it is the

best gift you and give yourself.

Patti

Hi C. and to all of my CEDA friends

I'll end this now. But I'll leave you with one final thought...try bursting

that " bubble " and going out and experiencing life to its fullest.

Jeff

" life is an adventure; enjoy the journey through it "

January 7, 2004

Hi Jeff --

I have two mottos I try to live by --

" If you're not living on the edge, you're taking up too much space " and

" Sometimes you just have to take the leap, and build your wings on the way

down " .

And you are so right -- life is an adventure and to be able to enjoy it is the

best gift you and give yourself.

Patti

Hi C. and to all of my CEDA friends

I'll end this now. But I'll leave you with one final thought...try bursting

that " bubble " and going out and experiencing life to its fullest.

Jeff

" life is an adventure; enjoy the journey through it "

January 7, 2004

Jeff

Well-said. I agree that we should live each day to the fullest...I know my

late (13 year old son) did and we are trying to do the same.

Betty (recently diagnosed VEDS)

Hi C. and to all of my CEDA friends

> Hi C. and to all of my CEDA friends,

>

> What I am about to say may sound like I am being mean or rude but this is

not my intentions it is my hope to pass on a good message. So please just

hear me out.

>

> , I can just imagine that is feeling down to start off with

having a pain in the butt (literally) sucks and I think that I have full

authority to speak on this matter. However to be missing school and the

interactions with his teachers, friends and peers is a crucial thing to ones

self-esteem, self-worth and happiness levels. Like I said having the

tailbone injury sucks big time but I went to school every single day when my

tailbone was in such agony and we didn't know why. Low and behold the

tailbone was curved inwards at more than a 90 degree angle and ended up

having to have the tailbone removed. NOW THAT IS PAIN!!!! But not even six

weeks later I was back at school with my stupid little foam cushion (and yes

it opened me up to some teasing) but I did it because I missed my friends

and that interaction. I think should be going to school. You never

know, just being back at school and with his friends and staying on top of

his homework may keep his mind

>

> Now you all say, how could I say these things well I have changed a bit

over the years. I don't know exactly what I would call it, a life changing

experience, a newer and better (at least I think) out look on things

whatever you want to call it, that is beside the point. There are so many

points that I wish to express and firmly believe in like

> ~The Happier you are The Healthier you are

> ~I have EDS, EDS DOES NOT HAVE ME

> ~You only have one chance at this life time so go out there and enjoy it.

> We are consistently putting ourselves or our children into this little

protective " bubbles " but for what??? If something is going to happen it

will happen one way or another. So I figure if my shoulder is going to pop

out I would much rather it pop out while I was doing something I enjoyed

than for a really stupid reason. For example I rollerblade (yup it is hard

on the body but you have to weigh the consequences and to me its worth it)

and one time I was out and boom I was on the concrete and my shoulder was

out so I had to pick myself up and rollerblade the rest of the way home and

then took care of it from there. After that when I was in a sling for a

couple days and people asked me what happened I said it proudly I was

rollerblading. Another example is my return to university. I finally came

to the realization that if I kept putting university off until I was

perfectly fine it was never going to happen. And now I have started my

second semester and have obtained excellent

>

> Unfortunately with EDS things are going to happen but you just have to

continue on with your life. I look up to one of my heroes who I

unfortunately lost in October. She was only 39 years old and I truly

believe that beside the angel in the dictionary should be her picture. She

couldn't have been more of a kind, loving, caring person. Sadly she

suffered with Diabetes from the time she was 18. I won't go into the long

details of her suffering but it was bad and she was legally blind and had to

rely on everyone. BUT Not once did she ever complain, or say " why me? "

instead she was always asking how I was doing or anyone else. She never

missed sending a birthday card to everyone on her mailing list, except one

year for me when she was critically ill in the hospital and as soon as she

got out she phoned me to apologize profusely. If there was anything she

could do for anyone she would do it. And to me I think she had the BEST

outlook on life and I think we should all take a minut

>

> I'll end this now. But I'll leave you with one final thought...try

bursting that " bubble " and going out and experiencing life to its fullest.

>

> Jeff

>

> " life is an adventure; enjoy the journey through it "

>

January 7, 2004