Hi,

This is Kate's husband Steve to tell you how RSD has effected our family life.

Hello, everyone...

What I feel the most is just unending frustration. We never know from one day to the next how Kate will be feeling and it makes it very difficult to make any kind of long-range, or even short-term plans. The things that we do take much longer than they used to simply because Kate's energy level is much lower than it used to be. It is an emotionally draining feeling because there is no end in sight, and it often seems that the whole problem itself is very hard to define.

I often feel that with RSD the doctors are chasing after something that they can't really find, and it drives me crazy. I want them to FIX IT and they don't offer a lot of hope.

Kate can be quite sensitive to touch, sometimes even a light touch can cause pain. This can really limit our closeness, depending on how she is feeling on any particular day. We had to buy a lot of new clothes for her, things that are looser, more comfortable, like sleeveless shirts.

I try to be supportive as much as possible because she often feels sad and frustrated. Sometimes she just wants a hug or needs to have a good cry. I try to be there at those times. I'd like to be around the house more, but I have to work.

I worry about my own health...I'm working to keep up the medical insurance, and I feel the burden all comes down to me; I fear what will happen if I suffer from some health problems.

I guess if I had to summarize everything, it is just not knowing the future and where this is all going that I feel is most troublesome. I am determined to hang in there. I've faced worse, and I'm still here.

Steve, You are a very loving and devoted Husband and My Husband worries about the samething, If He suffered from a health problem also or loses healthcare covarage with the way things are going with our economy. I wish my husband would open up and let some of the stress out like you because I'm worried he will start to become so overwelmed on what to do and what the future holds .Only if He would join the forum and chat with the other spouses that are going through the same. I think about what affect it has on our spouses all the time, Having to adjust their schedule to see how we are feeling before we can plan a day with our family and how long can we stay. That is alot on a person to take in and Thankgoodness for the fine loving people you are to take care and help us or we would have no were to turn. Now Days with all the stress some men give up on and can't take it. Most Husband always know they can fix things when it is broken and that's why my husband ask the same, Why can't it be fixed.

Shandi: You are very lucky that you are not facing this alone. I have had RSD for over eight years now and I am now a single mom of three grown boys. However they were younger when I first had this ugly dx thrown upon me. I know that someown else said on this post that (I think it was there,children or family) Did not even want to understand what RSD is all about? Well that is what my three boys have done. It just rips my heart out! I thought after they got older this would all change and maybe they would have some different thoughts about what I was going thru. Even my oldest who has my only grandson is the worst one. He will not even call me,I have to see my grandson thru his wife. Shandi-just never let a day go by that you do not hold,love,encouraged and share your dreams with your children! All of us have a secret self that needs to be encouraged and shared with those we love. You will do fine just smile and be your self! Love To Your Family... Breezy55

Breezy that just rips my heart! I am so lucky my wife is completely understanding. I can't imagine having your oldest child not being there for you. God bless you.