[not2happy]

I would like to know what the heck I did in my lifetime to deserve having this tossed my way. Bad enough I've had two foot surgeries to struggle with, but now THIS stuff.

I want a refund on my life.

How do you guys come to grips with dealing with this stuff, knowing that you never really will be free of it until the day you leave this Earth?

[GalenaFaolan]

Well, I can only speak for myself of course, but I have never viewed RSD as being some kind of punishment nor have I ever seen it as being the end of my life either. No, quite the opposite. It was the beginning of many things. The beginning of a "new" me, a "new" life and a greater appreciation for life itself, the cherishing of all the little things most people don't take time to enjoy because they're so busy rushing about to notice anything at all.

Everyone handles the process of getting RSD and accepting it and their life now in different ways. Some have to go through a grieving process before coming to terms with it. Myself, the only thing I ever grieved over was the loss of my job which I loved more than anything and of course knowing that I will never work again.

I focused on learning to walk again and handling the rapid spread to all of my limbs, hips and shoulders. It's been just over 5 years now since the day it all started. 11 short months was all it took to put much of me in pain. Then again, what's a little pain when I am still breathing, able to feel joy, sadness, love, still able to hug my children and husband, look at them knowing how much they love me, pain and all. I feel immensely lucky to feel it all including the pain because there are fates much worse. Like being in a coma, being in a vegetative state, being, well no longer of the Earth. No life is much better this way than not at all.

I was 33 when it started, 38 now and even thinking of all the years I have left ahead of me, well, some days, especially the bad ones, I shrink away from the looming question "where will I be then?" No, there's no use in negative thoughts and I found that I don't need to think of it at all, except in terms of when my hubby and I celebrate our 15th wedding anniversary this year, the day my youngest child will graduate from middle school next year, the wedding of my oldest son this year, the birth of my first grandchild at some point in the next few years. Things that mark the milestones of life.

I surely hope I don't sound like some kind of freaky, happy go lucky, life is a bed of roses. I have my down times, especially when my pain is high. I generally don't wallow in the negative because there's really no point in it. I do allow myself one day every couple of months, sometimes once every month to just say woe is me, then well, life goes on. I can still do a lot of things to make myself happy, I can make others happy as well and I can still find pleasure in hobbies. I hope I haven't bored you to tears either, but life isn't over by any means, it's just changed a bit and the future is what you choose to make of it. See my signature for my own personal motto because it really is true.

Hugs,

Karen

[Desi]

Karen,
What a nice post! You just made me do a lot of thinking after reading your post! This is all so very, very true and I for one want to thank you for such a positive attitude that you have! Wow!! Such meaning in all of this that you wrote! You truly amaze me. I have a good friend who is dying of lung cancer(She never smoked a day in her life,) the doctors some how related this cancer to the breast cancer that she had 3-4 yrs. ago. The cancer has not spread, but it is wrapped around her main artery of her heart. They had her on the strongest chemo and it still will not shrink it. She NEVER complains, just says she's pretty tired. She coughs so much that her entire chest, back ribs hurt her. they even removed the breast that had the cancer in it and she is going down hill pretty fast. She has a good strong support of her family, has an 11 yr. old daughter, still go's to church. I don't know how my friend(Amy) comes to grips with all of this too. She asks me how I am doing? How I feel.. never about herself. she never says why me? She is now having Hospice coming to her home. She is around a 10 hour or more drive away from me. I seen her not too long ago and you can tell she's hurting, but is intent on listening to everyone else and how they are doing. So, again.. Karen, thank you for your "eye opening reply". ~Love, Desi

[ali12]

Sorry to hear that you are dealing with RSD too - I really hope that you can get your pain levels under control soon!

I sometimes too think "What did I do to deserve RSD" but then I realise that it was not mine or anyone else's fault that I developed RSD.

Try and think of the things you can do and not the things you can't do - I find that it helps!

It also helps to know that I have some good friends and that most of my family are supportive.

Hope this helps you.
Pain free hugs,
Alison

[MarkB]

"I would like to know what the heck I did in my lifetime to deserve having this tossed my way."
What does anyone do to deserve their lot? What do Anna Frank do, or the 6 million Jewish people do? What did, what did, it can go on an on, both ways.
But, I think You should consider about talking to your doctor about depression. We absolutely deserve the right to be depressed.

"I want a refund on my life."
I'm assuming we have all thought about getting a do-over. Even the person with one of the biggest do-over stories ever, Lazarus, ended the same way. He died. He still became old and lost the ability to do the things he could do in his youth. It can't be about what we cannot do; it has to be about what we can still do. I used to worry about smoking cigars. I don't anymore. I used to worry about the social ladder. Well, I still worry about it, but not as much and not in the same way.

"How do you guys come to grips with dealing with this stuff, knowing that you never really will be free of it until the day you leave this Earth?"
It isn't how we have come to terms w/ it. Our spirits our different. It is how will you. What brings you peace? What brings you joy?
Still, rail against the pain; rail against the lack of options. I wish for you a means of finding peace, joy and happiness that passes beyond the comprehension that should be experienced by those in such pain.

[december]

Ive had rsd for 2 or 3 years now iam so SICK of pain meds i have it in my right arm, and it has spread to my left arm, i also have cronic back problems
and im not sure if its into my back also, my arm sweats, swells &hurts so much i feel like im loosing my mind drs are concerned i may be dependent on the pain meds, well of coarse iam i depend on them to cut the pain somewhat, iam looking forward to the stimulator in my back for the pain and i pray it works,my wife died around the same time i got this and i have 2 teenagers to raise and i cant work the job ive had for almost 30 years
and i dont want to go on disability, i just want my life back i understand my life has changed drasticly and i need to make big changes and im willing to
try any treatment available to get off the pain meds , i do therapy and desensitizing, and hot & cold packs i sleep very little and im so dang depressed over this i feel LOST.
signed
december

[dealingwithtos]

Hi Everyone.

I also have RSD and Fibromyalgia.

I feel everything that everyone posted from time to time. I also feel "why me" and the fact that this isn't going to go away. But, I also am thankful for my husband, my son and my family. However, we all know that doesn't make the pain go away.

I think the biggest thing is to understand how all of us feel. For Not2Happy and December, I would be happy to talk with you. Maybe talking will make you feel better and the fact that others feel exactly the way you do. There are people who understand. I think all of us here understand how you feel.

I hope today or tomorrow will be a better day for you both. I'm thinking about you.

[dreambeliever128]

After my run of illnesses and surgeries and going through this for 20 years, I am still asking this at times. I was so frustrated a couple of weeks ago, I told my Dr. that the damn Drs. think we should just stay like we are. It seems like it seems normal to them.

Of course, he took it to heart and I had to apologize to him. He has worked his *** off to save my life and take care of me when the 100 of other Drs. I have seen have said live with it all. I guess like Vicc said, I don't have it in me to give up.

Depression does come with RSD. I think everyone dealing with RSD deals with depression. I have an implant in me for depression and even with it on, I get depressed even more when my pain level is at it's highest. I stood by the fridge last week and thought I should just kill myself.

If I weren't in councelling, I wouldn't be here today. I do think people need help to deal with the pain levels we suffer. On those days when the pain is above reproach, we need it more.

I do hope you find some help in dealing with the depression of this. Yes we have our families. I have a great one, yes we have our friends, I'm blessed with them too, but we still have the most unbearable pain it seems that can be put on anyone. They can't help us with that part. As I said, we need help to talk about it and try to get through it.

Ada

[not2happy]

I would like to thank all of you for your replies/suggestions/comments.

I've been "out of commission" for about a week. Sinus infection, inner ear troubles, major fatigue.

I'm on so many meds right now I almost can't keep them straight.

EVen on days when I'm feeling jolly, I wonder why I had to get stuck with this RSD.

I saw my pain doc yesterday, and he told me that he hopes that I will be one of the lucky ones to not have this RSD go full blown and spread, because most do. I must have had quite a look on my face, because then he said "Well, you want me to be honest with you, don't you?"

I have never been lucky with anything in my life, so that probably means my RSD will migrate to other body parts.

Family and friends sometimes can help, but I still believe that the only people who can truly be supportive are ones who battle with the same conditions. "Been there, done that" type of stuff, ya know.

And I can't seem to find anyone around me, relative or co-worker, who has this trouble. And there is an area chapter of RSD in town, but guess what? They meet during the day when I am at work. How dare they not do an evening meeting!!!!!

My family is basically ignorant when it comes to this stuff, all they concern themselves with is if I'm able to put food on the table or do the laundry! I can get more compassion and/or support from a co-worker or a stranger.
I still have not accepted the fact that I have this "disease" or "condition" or "curse" yet. Guess I seem to be stuck in the denial phase of things. Ah, well. This, too, shall pass.

Again, thanks for the posts. I appreciate them very much.

[nikmcjo]

Hey. Im sorry you feel like crap about all of this

My english teacher gave me a really good statement (we had poetry assignment thing, one poem was on rsd and frustration and stuff). on the back, he wrote that he has walked down the same path im walking down but it gets easier. although it may seem to be a bad thing, it can turn out to be a good thing. something good may come out of it. although it is hard right now, try to see it as such.
at first i was like dude...yeah. ok. but i really started to think about that statement a lot. i came to realise that even though rsd sucks, there is a reason for everything. and that was the point i believe my teacher was trying to get across to me. we had a journal assignment thing like a month after the poems and the question was "if we could change just one thing in the world what would it be? what about to ourselves?" and everyone was like "war! hunger! save the chinchillas (lol)!" and teacher was like...ok. then i shared and said nothing because everything happens for a reason, even if the reason seems pointless right now. it could save our life someday. people in the class were like hu? but my teacher seemed really happy for me. he knew exactly what i was talking about and seemed happy that i absorbed his comment. some people were making dumb responses to my statement but he said it goes a little deeper than that. then he just nodded gently to me.

i hope this helps. i also keep a journal w/ some of my bffs. we write about anything in it and just pass it around. we also like compliment each other. reading what they write about me helps a ton. my teachers are really really good about it as well. two of them are like experts at telling when im having a really awful day. but im allowed to lay my head down and stuff. i got my seat moved to the couch in my history class so i get to lay down most of the time. they listen to me a lot as well.

hugs

nikki