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.
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2 comments:
MAYBE YOU CAN HELP ME, I AM A PERSON SUFFERING FROM RSD AFTER BREAKING MY ANKLE AT WORK. ALL ALONG YOU HAVE HEARD THAT THE COMPANY'S INS. CARRIER OR WORKERS COMP. PAYS FOR YOUR DOCTORS VISITS, MEDICATIONS AND WHAT OTHER ELSE YOU MAY NEED, BUT THIS IS NOT TRUE IN MY CASE SO I GET WORSE EVERY WEEK CAUSE I AM UNABLE TO OBTAIN TREATMENTS AND PROPER MEDICATIONS AND DOCTORS OFFICE VISITS. THERE IS NO SUCH WORD IN THE ENGLISH LANGUAGE AS TO HOW TERRIBLE THIS IS TO LET ONE GO ON EVERYDAY WITHOUT ANY HELP OR SUPPORT. THE PAIN AND OTHER ASSOCIATED PROBLEMS YOU RECEIVE WITH THIS HORRIBLE DISEASE IS BEYOND RECOGNITION. HOW TO YOU EVEN EXPLAIN THIS TO AN ATTORNEY OR A DOCTOR WHO DOESN'T EVEN BELIEVE THAT RSD CAN SPREAD. I DO BELIEVE I HAVE IT IN MY BACK THAT IT TRAVELED UP FROM MY ANKLE AND IS ALSO IN MY LUNGS. MY BACK ACHES SO BAD AND I HAVE TROUBLE MOVING AROUND, FORGET SLEEP THAT WENT OUT THREE YEARS AGO, I AM LUCKY IF I GET 4-5 HOURS TOPS WITH THE LAST HOUR JUST LAYING THERE WONDERING WHAT IT IS GOING TO BE LIKE IS THE TRIP WORTH THE EFFORT TO THE BATHROOM. MY LUNGS WELL, THEY JUST KEEP ON MAKING ME HAVING TROUBLE BREATHING AND HACKING ALL THE TIME. WHETHER ITS DURING EATING, JUST SITTING, OR LAYING DOWN THERE IS THAT COUGH. PLEASE REPLY.
Davison,
If your attorney does not believe you, you may need to find another attorney. But first, you need to talk to your current attorney to find out what he/she truly believes about RSD. Many people have to fight to get worker's comp to pay for things, my husband included. He also had to fight to get his social security, even though he was already in a wheelchair. Talk with your attorney and ask for his/her realistic opinion about the potential outcomes for your case. Gather some reputable information for your attorney if he/she does not know much about RSD. Print off some articles from rsdhope or rsdsa's websites.
As for your doctor, if he/she doesn't believe it can spread, then talk to them to find out why they think that. Is your doctor an RSD expert? If not, find one that is or is willing to learn everything they can and treat you properly.
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