NeuroTalk Support Groups - How do you help your childern deal with your RSD?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - How do you help your childern deal with your RSD? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/82329-help-childern-deal-rsd.html)

Like Mike said engage, engage, engage!

Dear Mike and Tracy,
I totally agree with Mike that no matter what age there is always something you can do with your kids...even if it is watching TV together. It is really important to them to do so. It is nice for them to see you laugh at a show or play a game of chess like Mike suggested. I, like Mike, was mom and dad for over 10 years before this happened. I have hockey equipment, soccer stuff, baseballs, etc.. you name it I have always played it with my son since his dad lived several states away from him and never cared to be engaged in his life. I am a sports nut and love to watch sporting events and go to them as well. Since RSD, I can't go and do nothing. Thankfully, I was able to take him skiing several months before this happened and we had a blast. I try to do things with him but he doesn't realize it. We both enjoy cars so each month he was getting a magazine and we would sit together for an hour or so and look at it. Once, he would not read it until I was next to him (which I loved). I just think it is really important to have new memories for the kids especially ones like Mike's younger son who doesn't really have a memory of them doing things together because he was too young when his dad was diagnosed. We have to make our own memories with them and try to make them as happy as possible. Also, since they are in the teenage years and already think us parents are stupid it is more important to keep communication lines open with them. I've had a long road with my son but he is worth it and I pray it makes him a better man as he grows up. I have always wanted to write a book and have started one on "Living and Dealing with Chronic Pain" and I am going to have different chapters that deal with all the little important things we go through and now I think I have another chapter to add to my book!! Thanks all! I pray you all have a good day today. Thanks for your input on the matter...that is one thing I love about this site...we are all in it together and I pick up great ideas and tips from here. Keep up the good work everyone!!:grouphug:
kathy d

Hey Tracy,
I hear your pain and want you to know that I am here for you in any way I can be. If you want to you can email me at my aol acct and maybe we can help each other. My email is kdunn9951@aol.com. I think it is hard enough going through chronic pain each day but then to add kids to the mix it is really difficult. Others that don't have it may understand to a point but not fully like we can here because we are all in this together. Take care and like I said Please email me if you want to. I would love to hear from you.
kathy d.

Quote:

Originally Posted by screwballpookie (Post 487092)

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)

Thanks for the great ideas

Sorry I could not get back until now. There are some great ideas here. It was nice to see that I did do some things right, and I can build on that. Even with kids that are older, they still hurt, worry and are changed by RSD. My sons and daughter had a good talk and I explained a lot about this disease. I glad that others are willing to share their ideas. It is nice to know that you are not alone in this, but I do not wish this on anyone.

i guess its different for my family since i was already sick when i had kids and married .. so its alittle different for me. it does take alot out of my kids too my oldest does have alot more chores then some her age. and i do get sick alot. or things that other kids get to do they cant . but we try to make it as normal as possible we spend alot of time with the girls and do other things.

im glad that you started this thread becuase RSD does effect others just not us and some times i think that we forget this. that it does take alot out of our husbands/wifes/kids and the rest of the family. hang in there to all. hope this finds you guys in less pain

carrie