Hospital bound

[Guest guest]

I know I have not been very active on the list for quite awhile but I get

the digested version and I was staying right on top of things for months.

Lately I have just been skimming through and I hate doing that because you miss

so much of what's going on. Plus I find reading the posts I'm always learning

different things.

I have not been in touch with anyone from the list for a very long time.

My hip is stuck out again and I'm heading to the hospital to get it reduced

again and then I will b e admitted while my leg does it's crazy shaking. It has

gotten so bad ad they are strong that I threw my 135lb mother straight off my

onto the floor, I have also shaken myslef out of the hospital bed more then

once.

This time things are some diffferent. Sat morning when I was getting out

of bed I heard this snap/crack and there was this intense pain that shot down my

whole leg, I felt nausiated and dizzy, none of these feelings have left they

have only intensified. Last night I must have just gotten to sleep and I woke

myself and my husband up screaming. I had this new worse pain in my leg, this

morning I was on my way to brush my teeth and there was another agonizing pain

shooting up wmy leg. When I went to get dressed as wellas my leg sturning to

the side and getting stuck my foot is also facing not forwards but almost

straight backwards. I am on oxycontin 60mg twice a day plus I have percocet for

breakthrough but this is doing nothing for me. I am also on other pills that

are supposed to help with pain. My pain specialist also has EDS but he is in

Hamilton ( I live in Dashwood north of London between Exeter and Grand Bend)so

he doesn't perscibe my pills since I am too far away. He made an agreement with

my family dr that he would see me every 3 months and he would tell her what he

thought was best for my pain medication and she would write the perscription. I

think it was around the first or second month that she broke the agreement. So

now understandably has nothing to do with my pills. I was told by 2 Dr's and my

pharmacist when I went on the oxycontin that it was not meant to take all my

pain away it was meant to take it down and make it more tolerable. The percocet

was for when I had falls or something inbetween and needed a bit of help with

pain. My pain specialist and I had a cap on the oxycontin and if I was still

having problems at that dose after a decent time to give it a chance we would

ween me off and I would try something new. I was having problems and ended up

back in the hospital, they were having a hard time getting my pain so it was

tollerable so they upped my oxycontin 20mg twice a day with the understanding

that when I was discharged I would go back on my regular dose with a few more

percocet until things went back to normal. My Dr disregared all agreements and

kept me the higher dose. My legs have been getting worse and worse, I will be

having both IT Bands removed hopefulling in January 2005 but until then I know

my IT Band will slide over and get stuck and then I will have to go to the

hospital to get reduced then I will have to be tied up so my legs will not pull

out again. This often means a cathetar because otherwise I use the comode and

any weight on my legs makes my spasms so much worse when I get back in bed. My

hosptal visits are getting more and more frequent it was 4 to 6 weeks but now it

seems to be much closer to the month mark. For the past few months I have had

no control over my pain whatsoever. Last time in the hospital as well as my

oxycontin I was getting 1 percocet every 6 or 8 hours I'm not sure. This did

nothing. They say one of my problems is I smile and don't complain and I joke

around even if I'm in so much pain I'm sick it's just who I am. When I go in to

get it reduced I don't ask for anything for pain until they reduce it because

there are a couple of people who have told me to my face I'm just an addict who

does this for attention. If I wanted atttention I would pierce or tatoo

something not cause myself excrutiating pain. I think this time I have to talk

to them about pain control it all really depends on the dr who's in emerg. I

need some form of help I'm desperate. I really like my pain specialist but I

would like one in London so he could be my primary perscribing phycisian which

the one in Hamilton is uncomfortable with because he is too far away and can't

see me enough. As I have said (I think) I have had no pain control for nearly 2

months and I can't handle it. I'm hoping whoever is at the hospital will reduce

my whole leg and maybe be able to figure out why my foot is turned backwards and

I can't move my leg later. I'm also hoping, praying for help with the pain. I

can't live with this I feel like i'm going crazy.

What I actually started to write was can you take me off the list until I

get out of the hospital. It is okay if people write me privately but please put

CEDA or something in the subject line because I do not answer or read from

people I do not recognize but I read from anyone from the list.

I know this was all jumbled together and may not have made much sense and I

am very sorry. I have been in absolute agony and I have not sleptmore then 3

hours since last Wed and before that I was only sleeping 0 to 3 hours a night.

What I am trying to say is that could be why I make little sense. If anyone

somehow understood what I wrote and think they could help or have advice I would

really appreciate it. As I said please send it off list for now but just make

sure I know you are from CEDA. Thank you very much and sorry for the crazy all

over the place e-mail. I may not send in often but I try to keep up and I trust

everyone here, so when I have a question about EDS and some of the gray areas

the first place I think of to get answers is here. I was on before and had to

go off and the first time Jill really reallly helped me out. I just wanted to

Thank You Jill, I hope we have a chance to talk and get to know each other

again.