Re: How do you cope? (a bit of a read)

July 20, 2004

Hi Grace.

I'm Onale. I don't contribute much to the list, mostly just because I'm always

so busy and topics are old by the time I read about them. I'm 31, mom of 2 boys.

I was diagnosed with EDS when I was about 15 I think. I went from being a very

athletic, active person to someone who had EDS.

I have very much spent my life with this " black cloud " over my head that has

seemed to follow me everywhere. Since I was a little girl, I just seemed to have

really bad luck. I had many accidents, broke bones, etc. And above that, it

seems that everything that has ever seemed like it was going good in my life,

took a hard right turn and failed.

I have tried very hard to keep positive and for the most part I do... but then

something horrible will happen to beat me down again. Most of it has nothing to

do with EDS but when it seems like nothing in your life can work out, it gets

really hard to cope with the pain and other realities of this disorder.

I decided a long time ago that I was given this for a reason. My very religious

aunt has always told me that I can't " own it " , I have to 'refuse' the EDS and

not let it into my body. Which would also mean not wearing my braces or doing

anything to adjust to it. Don't get me wrong... I absolutely believe that there

is a lot more power in people than most of us know (or can accept) and that

healing comes in many different ways, but I just don't think that commanding my

joints to come back together and it just 'happening' is quite the point.

I have always really felt like I have a reason and a purpose, and a long time

ago I decided that my purpose was to take the phrase " you can't do that " as a

challenge.

When my mom broke down in tears and told me to realize that I would never ride a

horse again... I couldn't accept that. Not only did I ride a horse again, I

packed up a bag, moved to Alberta, got a job working in Bull sales and then on a

big cattle ranch. I did more physical labor in a few months than a lot of people

do in years!

Doctors told me that my back was really bad and my hips were so loose that I

couldn't carry a baby past 5 months and I'd be in a wheelchair. I have two kids,

2nd pregnancy was really hard but I never spent one minute in a wheelchair.

There have been countless things that someone said that I couldn't do and I did.

That's my purpose... to show people that only you know what you're capable of

and that there are hurdles to get over but you just have to get over them,

adjust, and keep going. Sometimes we have to do things differently, but we still

do them. And yes, sometimes there comes something that I just can't do anymore,

then I have to get creative and find a different crazy way to do it.

I'm sorry that I'm really babbling and this has become a very long read, it's

just so hard to explain how important coping is. I cope so that I can show

others, especially my kids, that no matter what life throws at me, I'll meet it

head on. It's my job!

July 21, 2004

I really struggled with the decision to have kids for just that reason, I didn't

want to pass this on to anyone. And yes, sometimes I realize how selfish I was

in having them and start to feel guilty, but guilt is a feeling that I just

don't have time for. I know that doesn't sound right, but I see guilt as a

selfish feeling. If I'm sitting around feeling guilty about what I did, I would

be a little self absorbed in being mad at myself instead of giving my children

all I can give. You know what I mean? (Sorry, I have a hard time explaining

myself in type, I never know if it's going to read the way I it to!)

Before I met my husband, I had decided that I would never have kids or get

married or any of that. When I met Tom that changed. We discussed the hereditary

issue and decided that it was a risk we would be willing to take. We were really

going by the fact that I'm the only person in my family to have EDS. (I have 2

brothers, 68 first cousins, etc and not a one has EDS)

I also thought that my brothers must be made up of the same thing I am so their

kids may be at risk too. I just wasn't convinced that by me not having children,

I would stop the risk of another child in our family having it.

I know it doesn't sound right, but like I said, I was just really selfish. And

when I look at my boys, I'm so glad that I was. I couldn't imagine life without

them!

July 21, 2004

That is excatly how I look at it now! I don't ever want to know what life would

be without my boys! Thank you so much! I think you explained yourself

wonderful!!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

Re: How do you cope? (a bit of a read)

I really struggled with the decision to have kids for just that reason, I

didn't want to pass this on to anyone. And yes, sometimes I realize how selfish

I was in having them and start to feel guilty, but guilt is a feeling that I

just don't have time for. I know that doesn't sound right, but I see guilt as a