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Old 03-30-2009, 09:34 AM
Jimking Jimking is offline
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Join Date: Mar 2009
Posts: 879
15 yr Member
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
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I'm new here, I've read everyone's intro posts and see the similarities those with RSD and caregivers go through. My wife Suzy contracted RSD in 2002 from a fall in which she broke her right wrist. She tripped and fell, at a family function in northern NJ, reaching out with her right hand as a brace when she fell. Her hand and arm turned blue as we rushed her to the hospital.

To give everyone an idea of my wife is that she is very stubborn and shy when dealing with doctors. I've known her for 29 years and in 22 of those years she may have went to the doctors twice. Her mother told me Suzy would cry as a child during doctor visits. Simply put, she doesn't care for doctors which have made these last 7 years shear hell. She was an athletic person who loved sports and even contact sports such as football and basketball.

At the hospital Suzy refused to stay the night and insisted on having the arm temporarily set and will have the arm looked after when we returned home to Washington DC suburb in Northern Virginia the next day. After two weeks under her doctor's care, the doctor told her and I that her arm was not set correctly and needed to be re-broke and set at the hospital. Suzy objected over the doctor's and my insistence that she check into the hospital. She insisted that the doctor numb her arm in her office and re-brake and set it there. Two doctor assistants remarked after the procedure that they've never seen any thing like it before.

Suzy did follow the doctors advice once the arm was reset and healed but never recovered. She soon went into PS in which I participated helping her stretch and move her locked wrist for a short time. Her pain increased and the doctors let her go. For 2 years she would go from one doctor to the next seeking relief of her pain and keeping me at arm's length, telling me everything was ok. After 2 years she told me she was diagnosed with RSD and was told this a year before. I, of course, researched this disease and went into denial, no way a disease like this can exist! At this time and several years after Suzy's RSD pain was not controlled at all. She only took aspirin for pain. Within the 3rd year Suzy started to loose her mind and started to hallucinate from the pain and became very paranoid. She complained to me the doctors refused to help her and more or less told her she was nuts and to pull herself up by the bootstraps and go see a shrink. I had my doubts about this, got angry and insisted that I take her to every doctor's visit.

I was shocked at these doctor visits. They would just brush her off as I sat there slacked jawed! With her right arm totally crippled, hairless, waxy white and cold, tears pouring down her cheeks, both of us begging for a plan to help her, we were brushed off again and again, told once more, yes she has RSD, prescribed Tylenol 3 and go see a shrink. We even made it to that Prestigious hospital in Baltimore, Maryland only to be treated very rudely and shown the door and all this from doctors who've told us they treat RSD.

Why are they doing this, there must be a reason. We would go to all these doctors with her records, MRIs, EMGs etc. and they would seem to get an attitude real quick not because we were rude because I was always dumb founded by the hole thing and was overly nice and calm. I just couldn't not figure it out! Suzy then started to explain to me the reason, in which I found hard to believe too. She believed it was because of her work which was the world's largest defense contractor and that she worked for their benefits department at their corporate headquarters for 15 years. She believed that it was her employment through her health insurance that was trying to dump her. She said she witnessed this over the years where a person was deemed worthless to the company because of a illness. She said, before it happened, that either the insurance company, who have representatives work full time at this large company, would make it difficult for treatment thus she would be unable to work so the company would dump her relieving the big company and the insurance company of a dead beat. I started to get hints that there maybe some merit to this when I explained 2 times with the insurance company that we are having a hard time finding a doctor who will treat her RSD. The insurance company told me both times they have never heard of RSD.

That time came when Suzy could no longer work and was put on short term disability-6 months, 4 years after her injury. At that time we found a doctor who appeared to want to treat her and prescribed some meds for her to control pain etc. Not the strong stuff but it was a start and we were exited about it. She saw Suzy 3 more time when the doctors where switched for some reason. This new doctor (the founder of the clinic) cut her meds down to one Vicodin per day and the weakest one at that. At the end of the month we went back to this doctor where I asked him what is the plan to help Suzy and he ignored me, I also asked him very nicely if there is no improvement with Suzy's condition will he sign for her long term disability which was coming due? He ignored me and left the room. He spent no more than 5 minutes with us. Two weeks later we found out that he ordered Suzy back to work, that she was fine and dandy. Suzy was terminated from work shortly there after.

Here's the kicker. When I picked up health insurance from my work to cover Suzy she immediately received treatment. The new doctor, in 2007, prescribed a very strong combination of drugs to help her in which it did. She was able to sleep through the night for the first time in years. She became much more normal. The doctor then sent her to George Washington Hospital for ketamine infusions and PS.

We've been in the process of getting Suzy SSDI for 2 years with an attorney with no luck. Senator Mark Warner of Virginia has stepped into her case to help her get the benefits that she earned from 30 years of work. My biggest fear is for us to lose our health insurance in this economic climate we are all in. I pay out of pocket $800 per month soon to rise to $1000. I really need her to receive medicare for our survival.

Suzy explained to me why she kept me in the dark those first couple of years. Her fear was that I'd leave her.
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