Friday, February 1, 2008


Hi, I'm 20 years old, and this is my first blog.

I have ehlers-danlos syndrome, and I was diagnosed with it 6 years ago. The geneticist told me that I would never get worse than I was at the time he diagnosed me... He is the reason I don't like doctors...

I'm not always a negative person, but when certain things happen, I do tend to look at the down side more often then the up side.

My current situation... I sprained my shoulder while washing dishes- most people reserve this kind of injury for contact sports, such as football, baseball... or professional swimming- my family doctor told me that I would need surgery to fix my shoulder... but that nobody would touch me because of my EDS. That was 2 years ago. By the time I got in to see a specialist, I had dislocated my kneecap so severely that it too requires surgery.

So after two years of waiting for appointments with specialists, I finally saw one 2 days ago. I'm still on a waiting list for someone to look at my knee.

I walk with a limp.

Most people don't realise that I am in pain 24/7 and those that do notice don't think it could possibly be as bad as I say it is, because I still continue with my normal every day routines.

I hear that a lot of people with EDS dislocate their joints frequently, and have to go to the hospital to get them popped back into place. That doesn't happen to me. I subluxate(partially dislocate) my joints frequently, and I wait sometimes minutes, and sometimes weeks for them to go back into place on their own, because doctors don't want to risk further damaging my connective tissues.

I got married in September of last year, and my husband is 6'9" so he also has joint issues, and he is supposed to have surgery on his hip sometime in the relatively near future. Between the two of us, we have a few problems, but on the whole we're happy.

Well, that's all I've got for you for now, so we'll leave it at that...


Jeff and Jenn said...

I so get this. I am in intense pain 24/7 and when I try and explain it people don't see it because I'm not constantly crying or passing out or something. There is litterally no way to explain it to someone that isn't in pain like that. Of course I still do some normal things because..... I'm not going to spend my life in bedrest, that hurts just as much! I cannot even imagine what it would be like to not have pain all the time. It doesn't compute in my brain. But nobody understands that, except for people going through it.
I just read through the whole blog and I'm sorry that you're going through it, too. I'm jealous that you can still crochet. I was never as good as you are (some of your little creatures are to die for!) but I would like to do it again and play the piano. They say there's hope when i get my finger braces soon! Anyway, thanks for sharing these things on your blog. I wish no one else had to go through it, but I'm glad I'm not alone.

noonaa said...

Hi! Your blog is so intresting! Im 21 years old girl from Finland! I also have EDS, i have read this about 2 hours :D i have to follow, i wish everythin good for you! Best regards Noora :)