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Old 01-06-2007, 08:29 PM
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DiMarie DiMarie is offline
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Join Date: Aug 2006
Posts: 2,871
15 yr Member
DiMarie DiMarie is offline
Magnate
DiMarie's Avatar
 
Join Date: Aug 2006
Posts: 2,871
15 yr Member
Book Rsd

Venessa,
My daughter was 16 when injured, she is going to be 30 yrs old in May. Her life is pain managing it and getting through one day at a time. A lot of the CRPS is touching items like terry towels, makes zaps up the hands and freaks here...too much stimulation. She has occasional flares of RSD that her arm will swell and it is triggered by change of seasons or heat. If she didn't have me as an advocate for her treatments the last 13 years, I am not sure what would happen to her.....

She had multiple surgeries; she almost did a lidoderm IV with Dr.Schwartzman but her bipolar would not be good her for her to be there ten days. Also, Dr.Schwartzman is not supportive for narcotic therapy, he wnated her to detox when she was done completly, not reduce or change meds.
But, in any other manner, he is the man. Paternal, grandfatherly, caring, supportive and dedicated!

There have been many surgeries, from CT, to breast reduction, to first rib removed, scar matter cleaned up from nerves....But as you and I chat here, she has difficulties. She can share where her pain is, activities that make it worse, only thing she ahd no anser to is how do you live, get up in the morning and pretend not to be disabled. Not even pretend, but, unable to make the most of her day. A good pain rehabilatations center to help her gain what she can, show her how to reduce what makes it hurt would be best...

I am hoping she will go to a place in Maryland. It is called I think Messa Clinic, or Mennsa. They do an overhaul, take you to medical centers for test and figure out what is tehre and an what more to do for your life.
I really would like her to decide to go there by spring.

De has Allodynia, hyper sensations to the brain. If you touch her with a tiny tip that has one end with three picks, and the other end a tiny paint brush tip, she could nto decern what is touching her, it all hurts.

She has a brachial nerve injury across the traps and into the arms from a stretch injury to the arms and uppper back and neck.If she is not looking a t a glass in her hands, she can not feel it, the lack of the brain focusing on it the hands do "feel" it and it dropps, big time droppsies are frustrating.

I would say she would talk to you....she is not really computer minded. But, if I can get her a better day I bet she will email.
You can feel free to ask about her treatments, mducation combos that worked and didn't.

THe hardest thing for her and our family is a life that has known pain since being a teen. She never really grew up, maturate normally. It has been a life of workers comp battles, applying for Social security. She has emotional problems triggered from not having good chronic pain psych support to how to grow uo, and manage a life with disability.Bi-polar.

I had gone to the same psych and he was the greatest. I was injured in 2000 and unable to return to my job as apolice Chief. I was so upset and hated not being thought of with respect anymore. To my coworkers I was a deadbeat on disability.
I also have TOS, herniations in neck and lumbar, rsd in the feet, carpal tunnel in hands, cervoigenic headpains.

With adaptive support from voc rehab and a great college system I retrained at 50 years old and work part time. I supervise court ordered visitations. Many of my clients were spouse or child abusers, predators, also mental disabilities.
I use a hot tub, valium as a muscle relaxant, topomax, lidoderm patches, toradol for flares and percocet. Biofreeze rub on, heating pad, and ice on neck.

I do feel as I was removed from work with in weeks of my injury, I did not get as bad as many others.
For me, I do not act limited at home. I do ask family to do hard chores, I do neglect chores, I am always involved mentally. In legal fronts as an advocate for mentally disabled, for a community recreations centr, even emergency management committies for our local area.

Also the forum, my friends on here have been a lifeline of information and support for ten years.
my email is dimarie11@yahoo.com
Dianne
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Pocono area, PA

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