Hi Eveyone,
I haven't been here for awhile I couldnt. I'm in a very bad place. I have been starting to lose control of my insides. I have no idea why something happens intil its to late. I had part of my intestents removed in 1995 due to a bad hysterectomy so for 5 yrs I was getting feed through IV 12 hours everyday to try to stay alive and I faught hard very my son was only 2 and I was divorced but I wasnt having any problems I still knew when to run to the restroom but the last 6 months it has been slow I didnt tell anyone not even the guy I was with but I has gotten so bad I went to see th guy I saw for almost a yr in Oregon where we were going to move with nd when I fly from Calif to Orgeon the first 3 days it was so bad I had to tell him I was losing control of everything I was am so imperessed and that was in Jan this yr came home after 2 weeks things got better then again its my bladder or my stomach then I still didint say anything than My pain was up into the high 20s nothing the pain dr and everyone was SORRY we will try to make you confertable WHAT nothing works Ive had everything all injections ,stimaltor,pump Im on meds what a joke Im on liquid morphine, Duragic Patches and stuff .I am in stage 3 and nothing my divorce is done who knew I was going through that to my 2nd one I got the house everything he got his car but I got the morgage and van payment and insurance and health inurance I have to pay COBRO my x works for the state so I got everthing but I pay he pay child support he adopted my son and support for me for 5yrs my son 3 yrs and in away sorry I didnt tel anyone then I got stiff my hand and fingers I couldnt type still having problems and I couldnt lay my hands flat my head want thinking is having that to and I finally told my mom my son 15yrs old on the 29 of this month he knew already he watches me I finally told my mom and then went to my regurlar dr I told her I knew The drs have been trying to tell me how long I have for 12 yrs I wont let them then when I got RSD almost 4 yrs ago I still didnt want to know but when I told my dr I looked at her and said I cant do this Im suppost to have 3 sugeries but I am not going to lab work just knocked me off I cant I just dont care but I asked her my dr in front of my mom because she hasnt been very helpful she is kind of anything for my son that what is great but I want her to be there she didnt know I was going to ask a hard question but being an hospic nurse I know I know my body I asked my dr how long do I have she put her head down and said you dont want to know you said she looked at me I said its time she put her head down with tears in her eyes and shoock her head and said Im sorry and walked out we are freinds we are close it hurts my bones hurt everything back eveything my breathing is changing Im tired all the time more .I saw my pain dr I forgot to tell him put it doesnt matter he did say dont do the sugeries only the stomach tub to feed me but remember its going to be very hard on me the pain the otherthings but I forgot to tell him about lossing control its unny I just started telling people on line that I have talked to about RSD and Im in a chair and I have gone propably 5 people contact me saying they heard my story and thank you I have rsd or a family member does so I have really opened up not just here It has helped I decieded I need to help if I can someone thats why this happened something is why so its been great Went to dinner for my sons bithday dinner and I ate a little and I couldnt make it .I close control rolled to the bathroom my mom came alittle behind me I didnt know I was starting to cry then she said are you ok I said mom and she said yes I yes no and she said can I help you I said no she said that she was going to have to get me adult pertection for my clothes when I go out which is never but to the drs and I sat there trying to fix myself and I said NO my live is gone at 39 I will never date I will never walk again Im turning into a shell with no felling but my heart and my brain knows im39 and alone and trying to make it to see my son graduate high school in 3 yrs. I told my mom I cant do this pain serve pain my body turning into a sshell with a brain that wants to do photos and raise my son have love some one that woud be able to love me I dont want to be alone just live I can live in a chair thats the easiest I thought it was hard not know. I live in Centeral Coast in Calif. I have been to UCLA and orther medica places they all say the same we will make you confortable Im sorry they cant nothing works I had two emails one from a band leder told him my story he has a spin problem he emails me and a wonderful man he said he was so happy to see my email and read my story he said but I hope you grt a smile Im a neuoligist dr he gave me some ideas but he is in a different counrty then the actor that did goerge of the jungle we emailed he said wow Im incetable that was great be it does go away. I found 2 support groups now that are here because we are kind of small Im in San Luis Obispo county. in Calif. SO WHY does anyone know any one in Calif ? I will go my insurance is hard but my dr can help.....................Can anyone here.................karen