[theoneRogue420]

Hi everyone. I just wanted to introduce myself, and give you the details of my situation. This will be rather hard on me... I have never fully discussed it with anyone other than dr.s and family.

I originally got hurt at work in Sept 92... what should have been a simple ankle surgery. But with it being work comp, they screwed around for almost a year, and my surgery took place in Aug 93. I woke up and knew instantly there was something VERY wrong. The Dr.s decided I was a hypochondriac... rsd wasn't well known back then. But their own PT dept. stood behind me. After all, they were the ones who were making me cry by running a cotton ball across my foot!

But that was as far as it went, with them. For the next 3 years, I ran around the western U.S. trying to find out for myself. Thankfully, I ended up at Texas Tech and met Dr. Gabor Racz. As I had NO money or insurance, he couldn't do much for me... but at least I understood what was wrong, finally.

My life, and the lives of my two teenage sons, was a mess of course. I finally ended up in Ocean Beach, Ca., where my sons were involved in a fantastic school program, for which I shall always be grateful. The only thing was, I couldn't afford to stay... nor could the boys afford to miss out on this opportunity. I ended up selling drugs to keep them in their school. I can't forget to mention that marijuana helped tremendously with the rsd pain, with none of the side effects of pharmaceuticals.

But leading that lifestyle, lead to other rather risky behaviors, of course. I now have aids as well. The aids meds have serious side effects, making the rsd pain ten times worse. The last several years have been horrible, until I made a decision... I went off the aids meds, and can now *barely* handle the rsd pain. In the last 14 years, it has spread from the right ankle to both ankles and to a lesser degree, the knees... and lately my hands and wrists have felt quite strange. Frankly, I am terrified.

My most recent health issue is the development of frontal lobe epilepsy. It turns out, the rsd may be responsible for THAT, as well. Does this disease ever quit?!? Geez!

So, there's my story. I can't regret any of it... in the midst of all this, my oldest son got his full presidential scholarship out of that program, and is out of school already. My youngest son is married and a homeowner at 20, with an equally bright future ahead of him.

I, myself, found a wonderful man, and through Michael I also found God. So although there is much pain and heartache in our lives, there is also a deeply satisfying sense of "wellbeing", even if there is no logical reason for it, lol.

I guess what I'm trying to say is that regardless of how bad this disease is, there IS life beyond rsd... no matter how short it might be.

I am so glad to have found this forum! I am hoping to be as big a comfort to others, as well. What doesn't kill us makes us stronger... after all this time I feel like King Kong, lol.

[Desi]

Wow! you sure have been through a lot!! are you getting any nerve blocks done? I am going for my second one this afternoon. I too have RSD(I was dig. with this last month) I had carpal tunnal surgery, and the pain, swelling, burning feeling is awful. It has also spread to my shoulder. I will be keeping you in my prayers. I am happy you found God and a wonderful man. Great job on raising your children. They seem to have accomplished much! Welcome!! Love, Desi

[theoneRogue420]

Thanks Desi No, I haven't had any blocks done in many years now. They weren't effective then, and I have several side effects from them that bother me to this day. I will never forget how pleased this one Dr. was when he actually managed to hit the root of the sympathetic nerve chain, apparently it was a rare thing. May have been great for him, lol... but I have a *tic* in my big toe that I have now had for 11 years!

[unrouley1]

your story brought tears to my eyes. i am so sorry that you have endured so much. i sometimes sit in my room and cry because i feel like i am being plagued, but it is nothing compared to what you are dealing with. you are very brave and i applaud your fighting spirit!

it sounds like you have had a very rough life. i encourage you to keep talking and sharing your thoughts. i'm sure you know that it isn't healthy to carry all of this emotional baggage on your own. it sounds like you have wonderful support in michael. a lot of people aren't as lucky. BUT the most important thing is that you have God. i encourage you read the book of james - it's a wonderful book of hope. my favorite verse is james 1:12...

blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him

sometimes it's hard to be positive and it's hard to have hope. but in those times when you have extra strength, try to focus on the good stuff... like your kids. you must be a great mom and you should be so proud of them... not just because of their success, but the fact that you helped them become who they are - thru adversity.

i will keep you in my prayers.



ang

[JOAN_M]

hi, and welcome to the group here. you have gone through a lot to get where you are now, and i hope you are at peace with yourself now. that alone will help the rsd. i also hope you find all the information you need here and some friends who 'know' what you are living with and can give you some comfort. joan

[junk4myemail]

My father died of AIDs and it is sad that the RSD cannot tolerate pills that extend your life. I pray that you have the most fullest life one can ever hope for and you see everything as a blessing. You did a great thing for your children, a mother's love is eternal. For which they are probably eternally grateful. Happy Mother's Day, by the way.

[lostmary]

I read your story and just wanted to say not to be hard on yourself. As a mother of 3 there isn't anything in this world that I would not have done to ensure that my kids had the best chance. that would include my own life. I respect all that you have been thru and done to help your kids. the greatest gift we can give our kids is the best we can do for them. your kids sound great and you know that they must admire and love you more than words can say. Hold your head up high, you have nothing to be ashamed of
mary

[frogga]

Welcome...

It seems that you have had to go through an awful lot as well as having RSD!! (which is bad enough). I'm Frogga, 21, nice to meet you.

Love and hugs

Frogga xxxxxxxxxx

[theoneRogue420]

I really appreciate all the kind and encouraging comments, they mean a lot.

I sure hope my intro didn't come across as whiny, or full of self-pity. I am proud of what I've done, for the most part. Yeah, selling drugs wasn't the best thing I could have done... but I also could have done much worse, lol. I never hurt an innocent person, nor did I ever sell to anyone under the age of 18. As a Mom of two teenage boys, I had my standards!

I rarely feel very sorry for myself. I used to, on occasion, I admit that. I still have moments here and there, too. But one day, while playing a game in my league, one of the women told me "Wow... you must be an extraordinarily strong person, or God wouldn't put so much on your shoulders." As simple of a statement as that was, it changed my life. I did sit back and think, and decided it was true, lol. I would much rather this were happening to me, than to anyone else. I don't know too many people who could handle it.

I also do what I can to still feel useful to this world. That's a huge part of the depression patients feel, we constantly ask ourselves "what am I here for?!? What good am I?" Well, even the most broken, housebound one of us still has plenty to offer!

My little contribution is to warm the homeless. I crochet afghans, and use a Knifty Knitter to make warm hats, that I then give to a charity that has direct dealings, on street level, with the homeless. I used to give them out myself, but I have to be cautious about getting any illnesses.

There is nothing more satisfying than seeing a hat you made on the head of someone who has very little else to call their own. Or seeing an afghan you made wrapped around the shoulders of a person out in the cold. You realize that God has uses for you, even if most folks can't see them.

Which is why the thought of my arms becoming involved with the rsd terrifies me so much. I'm sure, when or if I reach that stage, God will let me know what I am to do next... but in the meantime, I am a bit uncertain.

Again, I thank you all for your kind words. I hope to be an active, helpful member of these forums, not just someone who takes comfort without returning it