How has EDS changed my life?

[Guest guest]

Oh, boy, where do I start? I no longer ever feel safe and secure. Every

time I feel like I am starting to feel " normal " , something else happens to

either myself or one of my family members. Oh, you know, another ruptured

aneurysm, or dissected artery, or maybe just a stroke. Not to mention the

constant bowel problems, that the MDs like to refer to as Crohns disease, but

I know better, its the EDS. Just the same, the symptoms are no more

comfortable no matter what you call it. Constant pain and nausea, bad bowel

days, constant pelvic burning pain and no one that knows what to do for me.

I have also lost all faith in phycisians, a serious statement coming from a

registered nurse. This of course complicates everything because now when you

bring information to the doctors attention, your just the know it all, who

knows nothing as far as they are concerned. I have approximately 10

specialists, and they all just keep me going from one to the next. " I don't

think its another artery problem, must be your bowels. " " I don't think its

your bowels, must be your bladder or that one kidney you have left, go see

the urologist or the nephrologist. " I don't think its your urine go see the

rheumatologist, maybe he can figure something out. " and on and on it goes.

I feel like I am no longer seen as a person, just that young girl with that

horrible disease that no one knows what to do about, so its just a relief to

get me out of their office when they do see me. Every day I pray that some

day I will feel good again. That might be possible if it were only physical

pain that I feel, but it is not. It is serious grief over the loss of myself

as well as others in my family. The not ever knowing. If it was terminal

cancer, I might be able to plan, but its not. Everytime I try to talk to

someone about how I feel, I get, " well I could die tomarrow too, you never

know " , as if this is some how supposed to comfort me. No one wants to talk

about this including people who have it (vascular EDS). This is how EDS has

Changed my life. Ginley

[Guest guest]

Hi Rickie,

Thanks for responding! I thought you were a guy last time, but alsoI don't

see you responding too often either. I am definately not a negative person,

exactly the opposite, but this is really how I feel. I am particularly

depressed as of late because of not feeling well, and my one sister recently

had a stroke. My husband took me on a cruise and I ended up sick for a third

of the trip with " Crohns " crap(pardon the pun, ha,ha ). Couldn't keep

anything down, not even fluids. Oh well, I'm home now and of course I feel

fine now. This happens every time we go away, I think its the rich foods,

and even when you think your ordering light, its usually not as light as they

have you believe. Well, gotta go and get my kids ready for school. Thanks

again and keep in touch. Sue Ginley