Hi Everyone.
I have full body RSD at 39 yr old .June 14th this yr will be 4 yrs. i broke my foot falling off or stepping off my brothers deck the last 2 stes were not there and he didnt tell anyone and he is an Artic/contractor so dont ask me why he didnt say anything to anyone and they have big partys there all the time. I was the lucky one. I was already ill with something ealse fighting to stay alive from that which I wasnt suppost to but I have. I have almost died 3 times from that. Im raising a teenager by myself. I have been since he was 5 months then got married again for 6 yrs just last week got the property issues done and I had been devocred since the last 8 months. I broke 5 bones in my foot and other injugeries to that foot along with it. I knew something was wrong because I worked for hospic since I was 17 before graducating. I love helping people and now I have to learn how to be the person they are helping. But I havent had any help for 7-8 months. I was/ am dating a great man but he moved out of my state we were going to move together but I couldnt move without my ex saying ok he did now but my boyfriend opened his own business so its alot for him right now. So Im here trying to keep going on.

A yr after I was still on crutches and the dr wanted me in a wheelchair but I knew I might not get out because the RSD spead so fast the dr said he never seen that so finally I ended in the chair. I havent walked in almost 4 yrs. The dr has done everything he can do for me injections stimaltor pump I have a bad problem with scare tissue and when they put the pump in I got a spinal leck so I was real sick they waited for 8 months before removing it and fixing the hole. So I have the same walking cast and living in a chair raising a teen and cant sleep and meds arent working but Im trying to go on. I have more bad days than good ones. I cant remember what it is to not have pain and not fell your feet except pain and numb from beig so cold and the rest of me is just like that. My son wouldnt even hug me or kiss me goodnight for the first couple of yrs and I didnt know why he said he was afraid to hurt me I said you cant so Im getting kisses again on the forehead but no hugs. My boyfriend gave me a different kind of hugs so I wish someone would just hug me I miss it so much and my mom isnt around unless its to take my son somewhere because she cant watch me in pain anymore so I really dont have anyone so I started learning how to use a computure from my son and I found some groups.

My friend is the pc.I have meet alot of people but as soon as they are told because they usually want to meet me things change thats how I meet my boyfriend. He doesnt care at all never has except to watch me hurt like I do.

So Im glad I found you and I hope to help and get some help here. There is alot more but I cant type aymotr so I hope a little by little you will hear more from me and whats happening. Best wishes to everyone and I hope I filled out the questions out right so I can talk too. Best to you all. Karen.....(rsd kitti)
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Karen,

I won't go on about me except I have had RSD for 4 years also 7 sugeries, 16 blocks,procedures on,and on and on.

I truly feel sorry for you it sounds like you are suffering terribly We all know all the tricks to try and get relieve, but to get serious remission without becoming a addict is to try and work with a doctor who is possibly with a teaching hospital working on things like ketamine theraphy or other cutting edge procedures. I did the ketmine procedure 2x's. I make it sound so easy it was not, all this takes alot of patience listening to doctor after doctor.

I worked it like a job and found a couple of doctors who first put me back together and than worked on the RSD. I am a normal person with normal health insurance and I got the the best care in one of the best facilities in the world and still see them and in remission for now and almost no meds. I no it sounds like a fairy tale but I left out about 90% of the story it took almost 4 years to get to this point and patience I never thought I had and I also have 2 teenagers and a husband who is very supoortive.

Please write back I would love to help

Ann.

P.S. I live in the NYC area so I have access to great facilities but living in CA I would think you have the same?

Hi Karen and welcome. I'm sorry for all your suffering. I hope you find relief and support here.

Julie

I hope this finds you, I'm not sure if I'm doing this right. But I really want to talk to you. Thank you for the very nice message. I cried when I was reading it. You are very suppostive I really need that right now. I got the flue which made the PAIN MORE INTOLLABLE............I wanted to try the ketmine procedure the coma one. I heard about it about 3 yrs ago a conferene I and my ex went to in San Degio. and then talked to my insurance and they wouldnt pay so we always said that the settlement money would be for anything I need to try or make me more confertble. As soon as I got the check paid our deit off and then I had my ex arrested for phyical abuse. And he has drined me of almost all of it knowing he try to get it but the courts wouldnt give him the rest, Sorry Im still getting a handle on that since we just about 2 weeks ago finished. My boyfriend that I never said anything about the ketmine about was looking on the pc to learn more and he saw this so I got an appt in Penns. but we had to cll and not go they dont do it in Calif. and you need a dr to do follow ups and no one does here also the money problem. I am going have to sell my house that I got in the property issues plus I might hopfully move to Oregon where my boyfriend is. Did you do the comma one? and what did you have done 2 x's with it. I was going to move my son there intil I was better or have him stay with my mom they (the drs) said I would probaly be a 10 day comma treatment how bad I am. If you could give me more info and what you went through I would sell everything I have and more. I was ill before this and in pain but I thought that was bad and havig to be on a vent because at 34 on my b-day I was in the hospital for an infection in my feed line due to a bad mistake during a surgery on the stomack a blood clot let go into my lungs and was going to my heart and all the problems with tha problem and being on feeding tub for 5 yrs was bad enough intil this.................They tried the feed tub again but they thing because of the RSD my body would take it the burning was so bad that my chest because thats where the tub goes and stops right before inches before your heart they had to stop it so my weight goes from 96 to 103. Is that a problem with RSD weight keeping it on ?We cant tell i it that or the regular stomack problem because they removed a part of my intestines. I will never eat or drink noramal again but they said I would die when they stopped the feeding tubs and that was stopped in 1999 and just for that month about 3 yrs ago. So I dont know what to do. We have great teaching universties here like UCLA, Stanford but they dont do the triales if you are in stage 3 so I havent found anything..................Ketmine was the best hope my boyfriend had a very bad cancer that the react of coming through it was very low but he did and he is 10 yrs older than me and this was 5 yrs ago so he is into looking thing up on the pc and tring things and very healthy things. And on top of everthing my dad just told all of his kids that he has cancer again but this time its in his throat and he has lost the abilty to talk very well or much but my mom said nobody was going to tell me because of this monster...........(my parents have been devorced since I was 2) even though I dont know you I do want to tell you something great in my life I was adopted and I just got to meet my birthmom and her husband last April I got a call on my sons birthday they were coming to meet me the next day...............It was great we talk and send cards. So thats one more thing that is happy in my life. There isnt alot but I wont give up.........I am a mom and we are fighters.....................If you can send me to the drs you are dealing with that would be wonderful I will travel around the world just to see another dr and see what they think. Do you know anyone that has tried oxygen tub my boyfriend thinks that might be something to look into?

I'm so happy for you that you are doing better and getting off of some of your meds. I would like to hear your story if you wouldnt mind telling me one day. I would love to keep in touch with you. If you dont mind...........I need a nice person that is a mom and has been dealing with it as long as I have and there is something about what you wrote really touched me..................Thank you again............If you know anyone in NY that would be a great reason to come and see NY I have always wanted to plus my boyfriends son goes to college at Carnell.Its about 4 hour drive that would be a great reason to see him and maybe my boyfriend would take some time and we could have some fun that is needed much............I also belong to RSDSA and RSDHope group they are together now that is the conference we went to. Its a good one to belong to also..Every month I get a news letter and my son donated 100.00 dollar in the honor of me for reseach. and we are going to talk to his high school health class about this because Im the only parent in a chair but I still go to all of his school things I ask him first if it inbearst him he said no why would I ask him that I'm just his mom and I always was thre before and if somebody ask him he tells him what happened and what it is...................SMART kid I have................and loving........ He is just so sad to see me in pain he is okay with me in a chair but not the pain and I am too.

Best wishes too you and wish you well. I hope we can keep intouch.

Gentle Hugs Karen

Thank you Julie,I know I will find lots of support here that I need very much. I was wondering what a Senior member Community Support team is? I hope I am doing this right and the friends list what is that for excatly and th other list the is with that, and if I put a check in a box does that mean I dont want them to be on my friends list do you know all of that? Because of the stage Im at Im having alot of hard time reading and understandingsome of the meanings plus Im just learning how to use a pc so Im a little slow on all of this

Thank you again................Do you have RSD to or are you here to help out? if you dont mind me asking. You dont have to answer that if you dont want to.....................................?

Gentle Hugs............Karen

Hi Karen,

Senior Member means I have a big mouth and post a lot, but not as much as Curious who posts way more than me. Community Support Team means that I am a moderator here. I am assigned to certain forums where I watch for problems and also offer support. First and foremost, I am a member with neurological problems.

On the Buddy/Ignore list, I believe the functionality of the ignore is that is for people you want to ignore (you won't see their posts or be able to receive private messages from). I'm not sure and I'll have to look it up on the buddy issue.

Julie, Thank you so much for getting back to me. I hope Im doing this right for RSD sopport and other things. I love what you said about it means your a big mouth. I glad their are people about there that will listen and help. Thats why I worked for hospic all those yrs its hard for me to ask for help but I need to I cant do it alone.
Thank you again ........I hope we can keep in touch with each other also........

Gentle Hugs Karen