[hopeful11]

Hi I am new to posting but need some ideas. I've had RSD for 11 years. I have 3 kids ( 16,18,21) My 18 year old is very sensitive to my pain and issues with RSD. He wrote a writting assingment on me and the disease. I thought I was doing a good job hidding most of my problems but after reading this paper I know that the kids were seeing more than I thought. I would like to know how others have help their kids?

[angelrsd]

i have 2 girls 8 and 5 and i have always had rsd and its hard for them all they know is that mommy gets sick and it hurts sometimes to touch mommy. so it is hard and there too young to understand yet. i would just be honest and try to do your best i have found that this works best

carrie

[Annie Poo]

I've had CRPS type II four years from venipuncture injury. My kids are now 8 & 10. They know that Mommy's arm was injured and they can't grab it tightly. I've also told them that because of the injury, sometimes I get really tired and need to rest.

[bassman]

My 24-year-old daughter just got married and last year she was asking me about RSD relationship to heredity and genetics. She is trying to figure out if this is something she may develop (I was 33 when mine started) or if she may pass it along to her children.

I told her that, frankly, I don’t know. But I have never heard of this monster being passed from generation to generation.

Mike

[dolphins]

I set my kids in front of the computer, and let them read stories of other sufferers, and this seems to help them not only understand what i am going through, but also let them learn that it is something that alot of people are just like me, and they have a better understanding, and i believe it help them see dad in a new light.

You can try whatever works for you, but I have found that the more they know, the better they are at dealing/understanding/copeing with what we are ALL going through.

[dealingwithtos]

I've had RSD for 3 years and it's in my arms, face and back.

My son is now 13 years old. He understands and knows that I hurt. He tries to keep the dogs away when I'm having a bad day. He often sees me, for instance, cleaning the windows this weekend. He stepped in and helped me.

He knows a little bit about RSD, but for the most part just knows that I hurt and that I have a nerve disease.

It is hard for my son to see me hurt and cry in pain. My arms are better because of the stimulator I had implanted recently, but it doesn't take everything away and now has spread to my back.

This disease just plain sucks. It's hard on everyone in the family.

[SBOWLING]

Originally Posted by hopeful11

Hi I am new to posting but need some ideas. I've had RSD for 11 years. I have 3 kids ( 16,18,21) My 18 year old is very sensitive to my pain and issues with RSD. He wrote a writting assingment on me and the disease. I thought I was doing a good job hidding most of my problems but after reading this paper I know that the kids were seeing more than I thought. I would like to know how others have help their kids?

Hello Hopeful,
I have 2 kids (24 and 21) I have had full body RSD for 8 years. It was hardest for my now 21 year old daughter. I had her read the information on the RSDS.org website. There was a time when both my kids made the comment "I want my old mom back". I told them I want the old mom back but reality is she gone. I told them this wasn't a condition I asked for or want but it's what I have to deal with. Helping your kids get information about the condition will help them udnerstand what your are going through.
Best of luck,
Sbowling

[kathy d]

Dear Everyone,
Unfortunately, it was nice to hear that I am not alone in having to deal with RSD and raising my son. I have had RSD Stage IV, Fibro, Rheumo. Arth., and Osteoporosis for 4 years now. My son was 16 years old and became my caretaker at a very young age. I am a single parent and my family members all live 45 minutes away. Plus, after all this time they STILL do not get it. I've about given up on them and just deal with my son and myself now. When this first happened, my son was the greatest. He would feed me and do all the errands. Up until about 9 months ago he was the greatest. Then, all heck broke loose. It seems that he should have had his "teenage adjustment" time back when he was 16 or 17 but stopped his life in order to take care of me after school each day, seven days a week. Back in July 08 (he was 19) he got a new girlfriend, and I had to kick him out of the house and he went downhill from there. It was horrible and the most upsetting thing I ever had to do since he and I up until then had the most wonderful relationship. It was like he cracked and told me he could not stand to see me in pain anymore. I felt as though he never even wanted to see me. However, it has been a long several months for both of us. He seems to be coming around and has really matured in the last month or so. It has been tough for him but he deals with it each day as best as he can. Our relationship is getting back on track and now I realize just how much he gave up in order to care for me. He is a great kid and now we take it day by day. He is my biggest supporter and the other night when I was in so much pain and could not move off my bed he did the dishes in the sink. Well, I filled up and cried because I realize now we are back on the right track. He and I always thank each other now for the little things we do. I guess I was so caught up in the severe constant pain I didn't realize how much he was suffering inside...even though I tried not to cry in front of him when my pain was real bad and tried to stay positive around him. I pray for people with RSD and chronic pain all the time because it is unbearable what we have to go through each day. I hope everyone has a better day today.
Thanks,
kathy d.

[screwballpookie]

Hey Kathy d,
I just wanted to let you know that when I read what you typed it made me cry because I am going through some tough times myself. I have had rsd since 2002 and I just keep getting worse. I have a 13 year old that had to start real young at helping me and I feel responsible for taking away her life. It is not fair. I want her to live like a teen should, but I know that I didn't ask for this monster and to get her to understand is pretty hard. I don't think she fully understands what is happening to me and I want her to understand even a little if I can. Every time I try to bring it up to her she just says yeah I know mom I hear it all the time. It hurts but I know she is just trying to be a teenager. She doesn't want to think about her mom in that way right now. I did watch Oprah last week and one show she had on was with Montel Williams. I don't know if anyone of you saw that or not, but I didn't think about taping it so I wrote a message to the Oprah show asking if it is possible to get a copy of that taping because everything he said was how I am feeling even though he has MS he has just as much pain as we do. He was crying on the show and I never see him cry while taping his shows. He said so many things that were true about the way I feel that I want my family to see it and maybe they would understand some of what I am going through emotionally as well as some physical. I think it might be the easiest way to get through to our children. I feel what the heck it is worth a try. I have nothing to lose.

Sincerely,
Tracy Tracy(screwballpookie)

[fmichael]

Dear Kathy -

This is a great idea for a thread, thank you.

In a nutshell, I have two boys, ages 16 and 11, which is significant, because my older son has lots of memories of hikes we did in the local mountains before I got sick in 2001, whereas my youngest has none at all. To be entirely candid, I didn't realize how hard this was for him until around the time he was 9 and I made reference - when the family was all assembled - to a time when his brother and I had found the skeleton of a deer in a stream, where it had been apparently attacked by a mountain lion, and he burst into uncontrollable sobbing, saying that he had NEVER been able things like that with me, at which point we knew I had struck a cord. This, notwithstanding the fact that we had been in Indian Guides together for a couple of years, often with the other dads taking the laboring oar. Then, shortly thereafter, our baby sitter to told me he had confided to her that I was a "heroin addict," apparently because he could see me getting sleepy after taking narcotic analgesics. (She promptly explained to him that I was just taking the medicines my doctor had prescribed for me.)

In terms of how to handle it, I have gone out of my way to include him in activities. We play frequent chess games, and although my nationally ranked little boy almost always trounces me, he genuinely enjoys the engagement. (A couple of months ago I actually checkmated him in a move that he didn't see coming: we were both thrilled.) I've also tried to explain to him what medicines I take and why. He's also benefited from a little psychotherapy, not much; a few sessions seemed to do the trick. But more importantly, I'm fortunate that my CRPS regularly is worse in the afternoons than the mornings, on account of which my wife has gotten good at fashioning weekend activities first thing in the morning, when I can be at my most active. And that seems to be a big help. Along those lines, we've gone out on YMCA fishing cruises that leave from a local harbor at 8:00 a.m. and return by Noon, and he has been thrilled!

That said, I'm a little nervous about the final Y Trailblazers' event before he graduates from sixth grade this spring, "rustic camping," e.g. tents, followed by white water river rafting on the Kern River. Because I couldn't hitch a ride with any of the other dads (everyone else has to hightail it back for a school event) and I can't drive that far, my wife is driving us up, spending the night in a local hotel, and picking us up the next day. I haven't had the heart yet to tell him that I will not be able to join him on the actual river raft trip (20 wet miles down a snow melt fed river) but that has to be done. That, and renting the necessary camping equipment, practicing setting it up in the back yard, etc.

As to my oldest, lately I'm sitting in the passenger seat while he works off the 50 hours behind the wheel that's required before he can test for his driver's license. Often, it's at times when I would be too uncomfortable to drive myself, but that doesn't prevent me from riding in the passenger seat. Turns out, it's been the most time since I can remember that we've been alone and really interacted together.

Please forgive me for going on so, but for me the moral of the story is simple: engage, engage, engage.

Mike