Friday, May 14, 2010
Dealing with dcotors
As I have written I have EDS and tis very painful, but I also have a metal allergy as well.So as fate would have it, before I knew about EDS i had a kidney operation, and lets just say they put a hell of a lot of metal in me to hold the kidney together. Over time I would have bad pains, but just brush them off.........until the pain got worse. I went to the ER swearing gallbladder or something in the area exploded.........my land lord came in the apartment and I was naked on the floor in a ball unable to move. Finally got to the hospital and the doctors did all their tests and said " you are in perfect health." I was angry sad and mad. That summer I had an ankle operation.....they used metal.........the area never healed until, they took the metal out. Later I had another operation, and I warned them that I think I am allergic to metal..........but of course they laughed and in went the screw...........3 months later screw came out and I healed. So at this pint I do not know what to do.........if a doc does do the operation the whole kidney goes..........but these attacks are becoming worse. Please advise or send cat nip.......meow!!
Monday, May 3, 2010
Ehlers Danlos Syndrome
I guess this is long over due, I have not really opened up about how EDS has ruined my life, and I think it is time to try to find others like me. ......I do not have many friends or people to talk to, so when I found out I had Ehlers Danlos, it was hard to accept.
For the first few years I fought with myself asking was this all in my head. I mean if you look at me I look like a normal fit person, but in reality I am anything but that. EDS makes the most simple things in life very hard, I mean everything from walking, running to getting in and out of a bath, it all changes. I once tried to get out of the bath tub and just standing I dislocated my knee.
I am at stage three, and on pain meds........the pain is so bad that some days I can not move or get out of bed, and it drives me nuts. When you try to explain how bad the pain is to other people they look at me and say things like " It can't be that bad." or " You are not in a wheelchair or anything, so stop feeling sorry for yourself."
I just look at those people and with they could feel what it is like to live with this for one day. I have tried so many times to live normal again, and each time the EDS screws things up. But I am happy to say, I have found new things to focus on like writing,poems,music,anime, and cooking. It helps to keep my mind on moving so I do not get depressed.
Well, just had to vent a bit. I have to go to the Doctor and find otut about my next operation.
For the first few years I fought with myself asking was this all in my head. I mean if you look at me I look like a normal fit person, but in reality I am anything but that. EDS makes the most simple things in life very hard, I mean everything from walking, running to getting in and out of a bath, it all changes. I once tried to get out of the bath tub and just standing I dislocated my knee.
I am at stage three, and on pain meds........the pain is so bad that some days I can not move or get out of bed, and it drives me nuts. When you try to explain how bad the pain is to other people they look at me and say things like " It can't be that bad." or " You are not in a wheelchair or anything, so stop feeling sorry for yourself."
I just look at those people and with they could feel what it is like to live with this for one day. I have tried so many times to live normal again, and each time the EDS screws things up. But I am happy to say, I have found new things to focus on like writing,poems,music,anime, and cooking. It helps to keep my mind on moving so I do not get depressed.
Well, just had to vent a bit. I have to go to the Doctor and find otut about my next operation.
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