RSD caregiver support group

It is very hard to find people to talk to about caring for a loved one with RSD. There are several really active online support groups for people who suffer with RSD. I've even participated actively in one in the past. But it is just not the same. At the most recent RSDHope conference, I attended a live support group for caregivers. It was the best 2 hours I have had in a long time. I've searched online, but there just isn't anything out there. So I think Ill start an online forum for people like me. It might be better than rambling on in a blog. But for now, I think I'll do both. So if you happen to read this and you are interested in talking to caregivers, please let me know. I'll post as soon as the forum is up and running. I'm hoping it will be up by the end of the week.

Picnics

Last night we had one of our picnics. Not the one where you load up a basket and head to the park to fight off ants. We had one of our not so unusual bed picnics. Since my husband cannot sit in a regular chair at the dinner table, we often bring dinner to him. I spread out a sheet on my side of the bed to catch the spilled food and put our son's "bed table" on there too. His bed table is one of those breakfast-in-bed tables that would normally go over your legs. He can sit up to it like a regular table becaue he is only 3 feet tall. We all have dinner in bed with daddy. Our son loves these picnics and so does my husband. While my mother shudders at the thought that we do not have a sit-down-dinner-at-the-table like other normal families, we enjoy it. I think it is very important that we have dinner together as a family, and not so important where we have it. So if you have someone with RSD in your house who can't participate in the traditional dinner, consider a bed picnic.

Blocking out the pain

No, I'm not referring to nerve blocks. Last night my husband's RSD was flaring because of the bad weather. I had done what I could for him and we had gone to bed. He was making a little noise due to the pain, but this is not unusual and was not cause for alarm. I was watching TV and drifting off and he complained that I must be just tuning him out. It was his way of asking for a little attention, but it got me thinking.

I do have to block out his pain a lot of the time. As any person who has a loved one with RSD knows, they are always in pain. And watching someone you love enduring never-ending pain is not fun nor easy. So, because the world did not stop with a RSD diagnosis, you have things that must get done. Our son has to be cared for. I have to work. Phone calls have to be made and bills must be paid. If I spent all of my time watching my husband suffer, everything would fall apart. That isn't what either of us wants. So, when I have things that must be done, I block his suffering from my mind. It does not mean I care any less or that I'm a bad caregiver. It means that I take care of things that are necessary, so that I can spend time with him, giving him the empathy and attention that he needs when he needs it.

Getting a new wheelchair

I took my husband to be evaluated for a new power wheelchair yesterday. The RSD is in his legs and his arms, so he cannot walk much and he cannot use a cane or a walker to help him get around. He has a power wheelchair, but it is very wide. It's hard to maneuver, so he won't use it much and therefore, he rarely gets out. I told him a smaller chair would be better and since Medicare did not pay for the first one, it should pay for a new one. Now that he has seen his options, he agrees and we should have a new chair in about 2 months. It will fit our new van and new lift that I bought about 8 months ago. That's good because Medicare does not cover wheelchair lifts and there isn't money to buy a new one right now. Funny that it will pay for the wheelchair, but do not pay for a ramp so that you can get it inside your house, any modifications that need to be made to the house or to the car so that you can actually use the wheelchair.

It was a long car ride, but it gave us some rare alone time to talk about things. At home, we have a little one who takes up most of our time when I am not working. It was nice just to be able to have a conversation without interruption. We'll have to make more time for that. Sometimes the rest of life gets in the way. That happens to couples who are not dealing with a chronic illness too. But for those who have the added distraction, it can be really easy to overlook your relationship with your spouse/partner.

I've had a lot of requests lately

I have had a lot of requests lately to share my story. I am an attorney, a mother of a toddler, webmaster for a website for busy moms but most noticeably, I am the wife of a man with RSD/CRPS. This means that I am the caregiver to a chronically ill husband. I am writing this because others have asked me to share. I am not looking for pity. I want this to be a place that others in a similar situation can come to learn. I hope that it will help others in my situation see that life can, does and should go on. This means you will be hearing about more than my husband's illness.

Chronic debilitating pain is the one constant in our lives.

For most of you that may mean nothing, but in my life and those who share my situation, everything is governed by this insidious disease. RSD (which stands for Reflex Sympathetic Dystrophy) is also know as CRPS (Complex Regional Pain Syndrome). I tend to call it RSD because that is how I've referred to it for the past 7 years.

What is RSD/CRPS? Well, that depends on who you ask. But the general thinking is that is a disorder of the nervous system that affects pain response. It used to be called RSD because it was thought that it was a disorder of the sympathetic nervous system. Now it is know that this is not always the case and so it has a new name.

I could go on and on about the disorder itself, but the site RSDHope.org has great detailed information for anyone who wants to learn more about RSD.

Here's our situation. I will note that it is not totally typical of a family dealing with RSD because the extent to which the RSD has spread is not common. But the pain he suffers and those with RSD suffer is no different, whether it is one ankle or your whole body. My husband has "full-body" RSD, which means that it exists in all four extremities and part of his back. He is always in pain. On his best days he can get dressed and go out to eat or shop for a few hours (in his wheelchair of course). On his worst days, he lays for days without sleep in the bed because the pain keeps him from getting comfortable. Getting to the bathroom isn't even possible. On his typical day, he may get out of bed for an hour or so to play with our son. I work full time as an attorney. I handle nothing but Social Security Disability cases, so my day is filled with other who are suffering from a wide variety of physical and mental impairments. We have a beautiful son who is almost 3. He has had some health problems of his own, but nothing that he won't outgrow (we hope). He is in daycare while I work. I manage a website for busy moms. I try to help out others dealing with RSD when I can. I don't have much time for anything else, but I occasionally quilt when I can squeeze it in.