[snowboarder13]

I have been reading everything you guys have wrote. Mainly ones asking for help because their child has RSD. I just want to tell you to hold on tight to them while you can. Its hard going at this alone like I did and still am. Show them you love them. Ask them if they need help. If they say no, help them anyway. The hardest part of RSD is not having anyone to turn to when you need them most. Children especially need to feel like they are part of something even though they cant do much sometimes. Ask them to help you out with whatever they think they can do at certain times when they feel better. They will get a sense of pride because even though they are in pain they can still be apart of something. Dont let your kids go at this alone... It would cost you in the end.

[keep smilin]

Originally Posted by snowboarder13

I have been reading everything you guys have wrote. Mainly ones asking for help because their child has RSD. I just want to tell you to hold on tight to them while you can. Its hard going at this alone like I did and still am. Show them you love them. Ask them if they need help. If they say no, help them anyway. The hardest part of RSD is not having anyone to turn to when you need them most. Children especially need to feel like they are part of something even though they cant do much sometimes. Ask them to help you out with whatever they think they can do at certain times when they feel better. They will get a sense of pride because even though they are in pain they can still be apart of something. Dont let your kids go at this alone... It would cost you in the end.

breaks my heart thinking of a child/younger adult having RSD... Adults can't make sense of this monster..achild needs support and love even on good healthy days..Mysle, with RSD...I have said it a million times that this needs to be me..not either one of my kids... it must be me if it has to be.. not that I have found any answers ... suffering is terrible and the love a parent has for their child is unmeasureable!!! Only a parent knows... As for the rest of us, adults..take time to enjoy the simple , free stuff in life because as we RSD'ers know..our lives can change permanently tomorrow..without warning/// Bless all of you!!

[msdrea83]

it was definately a huge struggle for me to figure out how to go through life once i got rsd.... i had just turned 20 when my initial injury happened... not only did i have to regain use of my arm, and learn to deal with the pain, etc... but i had just started college as a nursing major, so i had to take a break from school and start all over figuring out what i wanted to do in life... nursing was out. my sister at the time was only 12, and didn't understand, and would constantly be questioning me, "why can't u do that urself?" or "why are u being so lazy?" or "you never do anything anymore..." i think that of all things was one of the hardest things to deal with... she was used to seeing me when i was in high school constantly on the go, whether it was going to hs games, going to work, teaching dance classes, taking dance classes, competing, etc.... and then when i came back home after getting rsd i wasn't even able to eat dinner w/o help or open a jar or straighten my hair....

it did feel good to be asked to help when i was able to, or with little things i was able to do. i hated being excluded, or not asked to go do something. even if it was obvious i wasn't feeling well enough to do something, just the thought that someone asked me if i wanted to go somewhere was better than just feeling ignored.

[snowboarder13]

Yea. I basically had to go at this myself and still do because I live in one of the many foster homes I have been to. They dont care... I have to find find rides to all of my doctors appointments and everything. My childhood was and still is messed up. Due to my anger, problems with fights and my mom just never caring and taking the advice of her boyfriend to get rid of me I was put in the system.

[msdrea83]

Originally Posted by snowboarder13

Yea. I basically had to go at this myself and still do because I live in one of the many foster homes I have been to. They dont care... I have to find find rides to all of my doctors appointments and everything. My childhood was and still is messed up. Due to my anger, problems with fights and my mom just never caring and taking the advice of her boyfriend to get rid of me I was put in the system.

well ur not alone now, u have all us!

[loretta]

Originally Posted by snowboarder13

I have been reading everything you guys have wrote. Mainly ones asking for help because their child has RSD. I just want to tell you to hold on tight to them while you can. Its hard going at this alone like I did and still am. Show them you love them. Ask them if they need help. If they say no, help them anyway. The hardest part of RSD is not having anyone to turn to when you need them most. Children especially need to feel like they are part of something even though they cant do much sometimes. Ask them to help you out with whatever they think they can do at certain times when they feel better. They will get a sense of pride because even though they are in pain they can still be apart of something. Dont let your kids go at this alone... It would cost you in the end.

Snowboarder 13- You have so much to give from your persceptive to young people and us parents. Thank you for your thoughts and caring. Please stay with us as your extended family. There are so many caring friends here willing and ready to be 'there' for you. Take care, loretta