Hi KB,
I think you are an amazing person for reaching out to others in your time of need...not only for you but for your husband and child too. I know it is hard for others watching people with rsd because most people don't know how to handle it nor do most peole want to. I guess some people figure if they don't acknowledge it then it may not be there haha. I try to use humor in my life esp when I know people are uncomfortable and don't know what to say. It seems to break the ice so to speak.

I understand where your husband is at in his journey with rsd. He is in the first year and that is a year filled with anger, so much physical pain, and the unknown. I cried the first year so much because I was a single parent with a 16 year old and no one to help us. It was terrible. But just take things one day at a time. If he doesn't want to talk about things then after your son goes to bed and your husband had been lying in bed and in a better frame of mind just talk to him. This time is the best time for no interruptions and it is calm and peaceful. It is all about talking how you feel. Six years later I really talked to my son and I realized he gave up alot to become our family caretaker at 16 but I never realized to the extent he did so. I have spoken to a woman who had a child and was constantly ill for years and still is. She has a tremendously supportive husband and family and the child grew up fine (She's 30 now). It seems as though when children are young and their parent gets ill they are better able to adjust to it than say my son was at 16. He was used to me being extremely active and doing all kinds of sports, fishing, etc. with him since he was born so it's been real hard for him to see me lie in bed everyday in severe pain.

I did have another thought once I read how your husband doesn't want to talk about it. Maybe you can find a disabled veteran or someone disabled from your church or area that could talk to your husband on a regular basis about his trials in life. Your husband has to come to the "new normal" that you both have in your lives. Having another man who has already gone through it already may help your husband see things in a new light. It may get him through the tough times now so that you both can get through the hard times together as a couple and raise your beautiful son (and I'm sure very active as boys can be haha) as well. When I was not able to work which was right away I looked at it as a good time to bond with my son. He would come in my room and watch a show with me and we could talk about that. It made him feel still close to me even though I could barely get out of bed. I know rsd and the whole nightmare surrounding it is unbearable most of the time but prayer and humor are what has gotten me through each day. Also, I don't know if you all are pet people but I have an amazing cat and little dog who keep me laughing each day. Maybe you could adopt a cat (cause they are easy to take care of more so than a dog you need to take out). When I am real bad my cat and dog don't leave my side (I usually have one on each side of me). Maybe a cat could lie in bed with your husband (because animals can sense when a person is ill) and he can pet him which helps your hands and arms with PT. My pets are my PT. They keep me moving. When he talks to the cat he is releasing his anger (and lowering his blood pressure) and who knows this might be the thing he needs and your son will love a pet I am sure. Even fish can help. There have been times where I could not get out of bed and I had a fish tank and just lie there looking at them. You would be surprised how neat they are to watch. It was like a science experiment to me to watch their behavior.

Hang in there and let us know what we can do to help you and your family. We are ALWAYS here for you. Listen to what people say but then you need to make decisions on what is best for your family.
Take care,
kathy d