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

Hey Karen.

Firstly I just wanted you to know that I am thinking of you and sending you love and hugs. I wanted to say please don't give up - have you tried the Prialt pump? one of my friends in the US who has VERY VERY VERY severe RSD which has caused gastroparesis and all sorts of very nasty symptoms - she has been fed by IV, G tube and now has a (Can't remeber - it goes into her intestines).. She had a prialt pump placed and it has helped her alot.

Secondly. I do know what living with this disease is like - I developed it when I was 16 (5 years ago) and it became full body within 6 months. I have been wheelchair bound for 4 years. Last year I lost the use in my arms, and most of the use in my neck and face. I go through periods where I can only move my eyes and cheeks but luckily haven't had a serious relapse to that in several months. Which is good . I am apparently stage 3/4 and have organ issues from the RSD. It really sucks and it is REALLY hard to live with some of the more horrible symptoms (which I don't discuss on NT really). I have a compromised immune system from the RSD and at times I have been very lucky not to have to have amputations - it was threatened for my right arm and my legs. I am so glad we didn't go through with it though.

I was pretty much bought up in a single parent family and my RSD/WEWRMT has effected our family so much. However, it has made us a lot closer. I started university earlier this year (October) and now have 24 hour carers. This has enabled me to be able to get on with my life more.

I couldn't work out from your email whether you have split up with your guy or not. I have personally found that there are men out there who are not scared by the RSD and who are willing to do anything for a woman they love - I have been engaged 3 times to different men - but it has ended with me breaking up with them.

I think you were trying to say that you have been diagnosed with a terminal illness? or whether it's the RSD that you feel is terminal? No one knows what will occur in the future.... especially with RSD.

Would you have any chance of having carers come in to give you a hand with things? that might help? Also you can have things like botox into your bladder which reduces the chance of it "leaking".

This email probaly hasn't been helpful to you at all. However, I just wanted to say that I can empathise with your situation and I really hope that it improves, and if it doesn.t that you can find good coping mechanisms to deal with it.

If you do need to talk then I am here.

Love

Frogga xxxxxxxxxxxxxxx

Hi RSD Kittie~ I am so sorry that you are in so much pain and feel so alone.
Kittie, it seems like your Mom is really reaching out to you, so that she can be there for you. You are her daughter, and there is NO bond stronger than that of a Mom and unconditional love for their children. You are a Mom, too, Kittie, so you know just how hard you fight to be there for your Son.

Try to let your Mom SHARE your "burdens", Kittie. TOGETHER, you, your son and your Mom can get through this situation!

Also, know that YOU have a LOT of supporters on this Forum. Like Frogga, I am not sure if my post has "helped" you, but I wanted you to know that you are in my thoughts and prayers every day.

Most Fondly,

Brokenwings

My dearest Frogga,
First let me say thank you so much and Im so sorry that you have had a very hard time.You have given me some questions to ask my pain dr thank you . I dont know if I have had a prialt pump I dont know what that is .sorry Can you tell me.I had a pain morphine pump that they put a hole in my spin so I had a spinal leak for 8 months with morphine going inside that. And theirs other things that is going on but I cant talk about it here and know one knows and yes I am terminal but its more from the bad hysterectomy the problems with that they want to do the G tub feedings my dr said that would be the only one if I wanted to but not the others but Im less then 100 pounds now and weak . I have been on life support before I got RSD but I came back finally I have died 4 other times on the table but I keep coming back and fighting and I a bad typer with my hands and being so stiff my dragon voice I cant get it to work yet right hopefully soon I cant type very well and my thinking has changed so much but yes my long term boyfriend after getting one part of my divorce gone in away we were all moving to Oregon together I was theeeir 3 times with him hhhhe picked out the bussness afer we called about it then I was going to buy the house we went shopping for the house everytime we foun one when I went up in Jan he went up in Dec and then I came back to finish court with my x for the property issues we had to go to court for 5 days It about killed me thr court gave me everything it ws the best thing that could happen since I was leaving Calif. the price to live on the coast is so high so it was going to be great I started getting thing ready and at the end of Feb no more calls went from4 times a day to nothing,its weird he isnt like that he is 49 and im39 and we have myspace and they match I havent changed minr yet our song and where its say relationship and he is #1 same with me one his and it hasnt changed so I dont know when I went to go see him I got realy sick for the first time he saw it I hated it it was the hardest thing for me he had cancer a year or so he is ok so I dont know but you know I dont have the energy right now and I have talked to alot of people on myspace with RSD it seems like once I was finally not hiding anymore relly nice people besides here come out nd my old friends from over 20 yrs ago that saw me in the wheelchair at my reunuion they are coming out to keep in touch.So thats been great and here when I can be on my pc.

I cant get a helper yet because for I have to much income and settlement I dont work so soon The money will be gone in a few months here you can only have 2,ooo a month my x pays support to me and my son and he has to pay longer than nomal because the judge knew my health and I will never work again and he married me when I had the feeding tub in my chest so he kknew but Im going to keep trying because I am alone I dont want my son taking care of me even though he does Im in bed most of the time now.

So if I understood you are going to school thats great I have a call I have to take but if you can tell me about the pump that would help. please email me back,. Im sorry Take Care Karen

sorry Frogga ,
Please tell me know how you are doing I didnt know you are so young and all this stuff was happening. Im so sorry.Thank you for careing and sharing with me Im still going to fight I have to much and my son Im just depressed the pain and the other systmes from it .Put you did help me alot thank you never think you dont, Take care hope to hear from you soon Karen gentle hugs

Brokenwings,
I think about you so much even when Im not here from the first day you have been here with me. I understand what you are saying Im just scared of whats happing to me and my son and my mom. Im really tried my body is really tired. Its going to most steps that I didnt know what was going to happen. I dont know is it hard for me because I worked as hospic nurse and I was watching but they were always elderly people and this is happing to me ,Is that part of it???????? I miss talking to you thank you karen

Hi Dearest Karen~ Sometimes, all any of us can really do, is just take it one little step at a time. Those little "steps" may seem quite "insignificant", given the BIG picture, but they ALL ADD UP.

The unknown IS scarey, Karen. We are all just "human" in that regard. But, then again, we really do not have much "control" over God's plans, do we? All one can do is the very best one can do, even if it is "minute by minute". While our "bodies" may "fail us", our FAITH never does; nor does our LOVE and our spirit! Frogga is a most wonderful example of that, and so many others here on this Forum!!

Karen, you have taken a VERY important BIG step, by SHARING and "opening up" to everyone! You should be so VERY PROUD of yourself. When others are aware of the challenges that you face, then it gives others an opportunity to help share your burdens, no matter what they may be. That's what friends and family are for!

We are ALL here for you, Karen. KNOW that and BELIEVE that.

You just keep your Faith and your Spirit. That is your TRUE beauty, Karen.

Most Fondly,

Brokenwings

Just sending a few hugs your way! (((hugs)))

HI InHisHands,
THANK YOU !!!!!! you are a wonderful girl..............You are very pretty .Thank you for your help this morning and I will write to you a little later............I told Adam my son about the site you gave me I told him it would be really good for him......He said yes he wants to .Do you know one of teenagers with dealing with this? He needs to talk when he feels like it. He would be on that all the time so if you know of one Please let me know............Im sending you all the hugs in the world..........Thanks for the hugs I needed them specially from you .....................Take Care dont do to much...................................Karen

Karen,

I know of a site for teens *with* RSD:
http://www.angelfire.com/wi/rsdhopeteens/

As far as caregiver's support groups here is what I have found:
http://groups.msn.com/RSDOutreach/welcome.msnw
http://forum.caregiver.com/
http://www.care-givers.com/community...ty.html#Anchor
http://findingpeacewithrsd.com/?gcli...FRtdQAod7m13PA
http://forum.caregiver.com/viewforum...2d9da2456ae51a


I hope that they are of some help to you and your son!!