I really understand RSD, the hard way
 

Hi,

After an accident in 97 crushed nerves in my pelvis on the left side, along with crushing nerves in the thigh and at the fibular head I was diagnosed with RSD. In 99 I landed in a wheelchair. 4 years ago it crossed over to my right leg. Between constant battles with blood clots, circulation problems and infections, I went full bore phase III. This past August both legs were infected and it went body wide. While they had me in the hospital trying to save my life, I had a clot hit my lungs. My wife almost became a widow over this one.

After saving my backside, the doctors told me I couldn't support my legs any longer and they advised that both legs had to go. I wasn't willing to loose both at the same time, but I did have my left leg amputated only 9 weeks ago above the knee. To say these past weeks have been a new learning experience is an understatement.

Pain is my constant companion. Between large amounts of oral opiods plus my internal morphine pump that needs refilling every 7 weeks, I understand pain rather well, but even though this darn disease has changed my life in nearly every single way, I still refuse to go on pity parties, for those who do party alone. Instead I'm always seeking new ways to serve, for I know of no other way to make myself feel better.

Between volunteer work for SHIP, along with caring of wife and 17 year old cat, the house, mowing, cleaning and cooking keep me busy, and I don't want it any other way. When the pain wakes me like it did today at 4:20 am, I still look around for ways to battle the current hits, and I look even harder for ways I'll fill this day with a smile on my face and a song in my heart. Then I go and play the piano.

I know well how RSD can really ruin life, but I also know that we have very blessed ways of making even more out of our lives if we really want too.

May this day find you feeling better, and may tomorrow be even better. Bob.

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Hi Bob, and welcome to NeuroTalk! :Wave-Hello:

I am so very sorry for all that you've been through. I think you are one amazing person! :hug:

NT is a great place to hang out with lots of friendly and caring people.

Here are links to the RSD forum and the Chronic Pain forum.

http://neurotalk.psychcentral.com/forum21.html
http://neurotalk.psychcentral.com/forum10.html

Hi Bob and welcome to NeuroTalk...I see that Maryann has given you the links to our Chronic Pain and RSD forums.

When you can't sleep we have several night owl threads and have some members from down under who keep different hours than we do. *grin http://neurotalk.psychcentral.com/thread67220.html

I'm glad you've joined us. :)

Hi Bob! Welcome to NeuroTalk! I see you've been directed to some great forums already so I'll just add my "welcome" and let you know I'm happy you joined us!

Hello Bob and welcome to NeuroTalk. Glad you found us and hope you make yourself at home and join in anywhere.

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Hello Bob,

I just joined the group this week. I have to tell you YOUR ARE AN INSPIRATION. I live with full body RSD (8years now) and I kind of feel like if life gives you a lemon make lemonade. On good days I enjoy the YMCA and some volunteer work and on bad days I still enjoy the YMCA and some volunteer work. My biggest supporter is my GOD we talk a lot and he has never failed me. I remember to laugh a lot it's better than any pill in a bottle.

Thanks for your posting and may GOD BLESS YOU!!!
sbowling

Hello Bob and Welcome to Neurotalk!!! It is great to meet you and everyone here is so nice and friendly so im sure they will be more than happy to help you and answer and questions you have if they can!!!!

I am SO sorry to hear about everything that you have been through!:hug: I cant imagine how hard and scary it must be to have to have a limb amputated and then face the possibilty of having to have another amputated!!! I really hope things start getting better for you real soon and you are in my thoughts!!!

I also suffer from RSD. I have it in both arms and my left leg - I developed it when I was 12 years old after falling and spraining my ankle and am now 14. Like you, I have tried lots of medications and different therapies and none have worked that well for me - I am now having to take Ketamine although my doctor doesn't like me being on it as he fears that it could affect my hormones because of my age etc.

I really admire your positive attitude and think that will get you far! To go through all that you have and still have a positive attitude is amazing!!! I always try and remain positive also - it's extremely hard at times but I figure that you just have to make the most of what you have at the moment!!!

If you need anything, please dont hesitate to ask - I am more than happy to help you if I can because I DO understand how scary it can be at times dealng with such an awful condition!!!:hug:

Take care of yourself and I hope to see you around the forum more real soon!

Alison

Bob,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug: