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Originally Posted by Swatgen27
Thank you everyone for your warm thoughts and advice as I really took the responses to heart. The advice and warm thoughts have helped me decide that I will be taking at least a 2-3 month off from work with the goal of sorting some of this out...
I went through numerous invasive procedures and the normal treatments for CRPS. Not one treatment provided the long relief so they were discontinued but the Dr’s always provided the next course of action. So I was referred to Dr Lubenow, which is the top specialist in the State of Illinois. He gave me two options and at this point in time I will only do non-invasive treatments so I choose Ketamine (I have been there and done the invasive procedures and each time the procedures caused more pain with no lasting effect).
After 3 outpatient treatments the Dr said he wanted me to check into the hospital and participate in the invasive treatment (which was a nerve block but instead of a traditional approach. The traditional being an injection procedure vs. having them put a catheter in the spine for two weeks.
And to the part that made me quite treatments:
I respectfully reminded the Dr that I refuse to do anymore invasive treatments and he was not happy that I would not consider what he said is needed... I said well if I don’t do this treatment what other options do I have and he said none and that if I don’t do what he say then I’m a dead girl walking and that I will die within the next3-5 years. I left after that part and never looked back...However what he said still haunts me every day.
And lastly, every day for the last 3.5 years I have fought so hard but at this point I have tried everything I know and it is not success that I’m feeling. In every aspect of my life this disease has taken a toll and that is the part I fought so hard against. I may have had this disease for 3.5 years but I grew up in a household with two amazing parents in which my parents happen to be blind and in one case deaf as well. My parents don’t let their disability stop them and they work so hard not to let it define them and that is why they are my role models but see how I feel today is even a failure as to what I wanted to do to prove to my parents that I’m strong like them.
I’m sorry to bring this negativity to the group as I don’t want to bring down others. After reading the great advice and heart to heart responses that were given, I have decided that I’m going to plan to get away for a while with my Hubby because the one thing I definitely know is I need a vacation.
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Your welcome-we are here for you! A vacation sounds wonderful-time to relax, plan your strategy, recharge. Time with your hubby with some good times.
It's wonderful your parents have a full life with blindness and deafness. But please please don't consider yourself a failure in comparison with them. Were they born with these conditions? Regardless, we can't compare those conditions to the pain and losses of RSD. We can't underestimate the physical and emotional pain of RSD. The well-known McGill Pain Index rates RSD near the top-I believe above amputation and near cancer as to pain levels. You can find that under RSDSA-our national organization.
What your Dr. said and did is inexcusable!!!!! As a professional-to say that to you to intimadate you to follow his plan =well, I would personally report it to the Board of the hospital, as well as the state board. It was emotion and verbal abuse to use his 'power' as a Dr. to intimadate you this way. The fact that it 'haunts' you everyday is proof> I am so very sorry this happened to you.
RSD patients live long lives, although not without pain. It's true RSD, as an autonomic condition affects our immune system, but we can counter that with healthy eating and various ways of boosting our immune system.
When I was diagnosed with full body RSD-generalized in my 9th year-6 years ago, my neuro suggested a psychiatrist. I found one that actually is my pain management Dr. He is also a neurologist, and pharmacologist, board certified, as well as other degrees. I can't tell you how much this has helped me. I had 2 1/2 years of 'grief' counseling when my paraents passed away, which also helped.
Most of us here have had physical therapy, to keep mobile, and densensitized the body from the 'touch' pain many have. I don't have the touch pain anymore because of it. I also have had unbelievable number of massage therapy, that has kept me mobile and desensitized. Swimming has also been wonderful for my mobility-water 86 degrees.
Swatgen27, please have a wonderful time and please keep in touch-we care. One of your new friends, loretta with big hugs
