RSD Alert www.rsdalert.co.uk
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If you have a story to tell,
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Tough
decisions
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doctor cut a silver dollar size hole in my lower knee and packed
it with some sort of antibiotic tape so it could not heal, but continue
to drain. Each day I was allowed to pull about a half inch of the
tape out and cut it off. It finally healed enough to walk to a degree,
although far from normal walking. Then came the pain specialist
to deal with the RSD that had then been confirmed. I started with
the basics of epidural pain blocks, sympathetic blocks, Clonidine
patches, Neurontin (oh gosh, this made me one ill puppy).... and
then my husband was transferred to Orlando, Florida, where we are
now. I went to one pain specialist who did several blocks and ultimately
wanted to put me on Percocet forever. I had been on Percocet for
a year and quit cold myself and vowed never to go through that sort
of drug withdrawal again, so I went back to my new orthopaedic (Orlando
Magic basketball team doctor this time) and he agreed with the Ohio
doctor that the knee needed another surgery to fully repair it,
but that the RSD had to be dealt with as my knee was in no condition
for surgery...the atrophy was awful. Then I went to another pain
specialist (my current one) who I've seen since Oct of 2000. He
tried blocks, Rhysodomy (sp?), facet joint injections, Spinal cord
stimulator, and drugs like Tegretol, Zanaflex, Kadian, MSIR (instant
morphine), and a few others that I've lost sight of at the moment.
Also tried some topical medications, but no luck.
My leg is quite discolored and has no muscle and is pretty much a dead limb. I have no strength to bend and get up without assistance.... and I'm not an overweight person. I'm 5'4" tall and weigh 125lbs. I had the trial morphine pump a few weeks ago and it was AMAZING in the way it reduced my pain, but when it was taken out, I went into drug withdrawal again. The doctor gave me the MSIR to help that, but I have a stubborn streak a mile wide and wouldn't take it. I just wanted those drugs out of my body. I have a major, major issue with control over things like that because during this time, I went to a doctor who raped me. Nice side note there, huh? I have countless items of evidence and he was found guilty...and also gave me suicide instructions and pills to do so when he got nervous (real nice guy, huh?), so being under the control of a drug scares me to death. As I write, I am scheduled to have the morphine pump implanted next Friday. My fear is the control, that I will go nuts with that in my body and also that I will reach a tolerance and have to experience another drug withdrawal... and I don't know that I can take that. My doctor is super, very highly recommended and I do trust in him completely. He is fully aware of my history with the surgeries and also the rape... and helped me to prosecute that doctor. He is very sensitive to my situation. When I have surgery, I can't just put a hospital gown on and go in. I insist on having my bra and undies on, as the thought of being put to sleep and naked are too much for me. My doctor respects this and if a nurse says something to me, like "you need to remove your clothes", he will jump in and just say, "she's fine". I feel like he has taken me under his wing so to speak and really has my best interest at heart. Reading my own writing makes me think that my problem is not with the medical aspect as much at my own emotions. I struggle with an eating disorder in the midst of this; just another control thing. I'm okay right now with it, but it is something I deal with daily. I wish I had a magic fairy that could tell me if this is the right decision for me. I know the pump takes away the pain, but are my emotions going to ruin that for me and drive me nuts until I have it taken out? Just thinking aloud, as I know, as everyone tells me, I have to decide these things for myself. I'm just scared. I keep thinking that I am 32 now and how long can I realistically be on morphine without reaching a maximum dose...or the damage to my liver. Morphine does not make me doped up and tired....I tend to get more hyper if anything and I definitely don't sleep well on it. I have an extremely, extremely high drug tolerance due to all the medications I've been on. It seems nobody can understand what it is like to hurt all the time. It's hard not to get down emotionally, really, really down. © Jacki
Orlando
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