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The new oath: hear no evil, see no evil, speak no evil

I had yet another disappointing (to say the least) doctors appointment today. He asks me how I’m doing. I tell him the truth. All in all, pretty shitty, just to sum it up for you. He asks what my main concerns are and what I would like “us” to work on first and foremost. I want “us” to work on the two things that effect my quality of life most, pain and lack of sleep.

He even asked my husband what the top priorities would be. My husband; who I brought with me as an advocate, my caretaker, and also the best witness to what my life is like on a daily basis; states that getting my pain under control would improve the other areas of difficulty I am having with this damned disease. Less pain = more sleep, a better appetite, more motivation which leads to more exercise, and an overall better feeling of well being.

BUT… Ol’ Doc, avoids talking about my pain or treating it. He avoids the subject all together. Prescribes me some sleeping pills, as if the klonopin, and flexeril, I take nightly weren’t depressant enough to get the job done. What is it going to take to make these doctors understand that it doesn’t matter how many depressant medications they prescribe me. My insomnia, and fatigue are being caused by PAIN. Pain will keep you awake through some of the most extreme circumstances you could dream up, if you could sleep that is. I’m sorry but it is hard to relax, and fall asleep when you feel as if your whole body is being torn asunder.His obvious uneasiness, and blatant avoidance of the subject of my pain, made it painfully obvious that he is never going  to help me. To him PAIN is a four letter word.

Right now, with the physical and psychological pain I am feeling, I have a few more four letter words for the medical community.

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a | Writer’s cramp. Abnormal clenching of fingers occurs selectively during writing; patient is otherwise normal. b | Fixed dystonic foot posture. c | Dystonia of arm, neck and face, exacerbated during writing. Patient first developed writer’s cramp, but subsequently developed dystonia of the neck (torticollis) and face. d | Involuntary dystonic flexion of trunk and extension of neck (retrocollis) during gait.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

THE BASICS….Dystonia. Limb dystonia is a cramping and “posturing” of mus­cles. This complication occurs in up to 43 percent of people with young-onset Parkinson’s disease, compared to only 4 percent of people with traditional Parkinson’s disease. Dystonia can become one of the more debilitating aspects of this disease, causing pain and the inability to function normally.

WE ARE TALKING FOOT DYSTONIA. My dystonia has generalized but I have it BAD in my feet. Here is what I have found to kick foot dystonia in the butt. I bought a pair of HARD SOLED slippers 1 size too big. I took 2 cheap pillow cases and cut them to just a little bigger than the slipper. I put a 1/4 inch of plain white rice in the saved (slipper size) bottom part of the pillow case and sewed up the open end. I put the rice pillow bags I made in the microwave for a minute or two, put them in the slippers and stick my feet in (make sure you wear socks). Instant relief, and you can do this as many times as you have to. BONUS: You can wear them outside too, because of the hard soles. : ) Let me know if anyone else tries this, and what your personal experience with it is.

Now, if I could find such simple solutions for the other dystonias and pain issues that effect my quality of life.

I saw my neurologist more than a month ago. He didn’t say as much, but in the midst of his attempt to talk his way around my questions, providing me with no real answers, I could tell that he didn’t have any, and that my “case” was beyond his level of expertise, and comfort for that matter. His solution! He referred me to the ONLY movement specialist within a 4 hour drive from here.  Great, I thought, someone who deals with these types of rare (at least to this state) conditions all the time. Someone, who won’t dance around my questions, who knows what needs to be done, and isn’t afraid to prescribe me whatever is going to help me. ME!!! Yeah, ME, I am a person, a fellow human being.  Sound too good to be true. It may be, considering that I’ve already hit my first catch. From the time of referral it will take 6 months to a year to get my first appointment.

I got some bad news yesterday. My physical therapist informed me that my insurance changed their coverage of my physical therapy, and that I only have 1 more visit allotted for this year.     My dystonia is “generalized” on my left (parky) side, and am also dealing with rigidity so bad that it has literally pulled my hip joint, shoulder joint, and sacrum out of their usual positions. Add the over-curvature of my spine, and extended periods of muscle spasms to the stiffness and bradykinesia, and let us just say, it’s hell on earth.

I was having a famously bad day with my Parkinson’s symptoms and excruciating pain yesterday. So, I called my doctor in tears and all he had to say to me was “once we get your Parkinson’s under control, you won’t be in pain anymore which should be a lot easier once you can get in with the movement specialist. JUST HANG IN THERE.” [Where I live, doctors won’t prescribe any pain medication unless you have surgery or you are literally on your death bed.] My many doctors have me on Requip, Artane, Naproxen, Flexeril, and Klonopin. The Flexeril and Klonopin are supposed to help with my dystonia, muscle spasms, and pain, but I might as well be taking a multi-vitamin. That is how effective they are. My physical therapist suggested that I should have my doctor switch me to Soma (another muscle relaxer but not a narcotic), because other PD patients have had some relief with it. I asked my doctor and he said NO… because “when it breaks down in the brain, IT MAY HAVE ADDICTIVE QUALITIES … FOR SOME PEOPLE”. Really!?! For SOME people it MAY have addictive qualities… that is your excuse for not prescribing me something that may help alleviate some pain and discomfort.

I have days that are so bad that I can’t button my own pants, or that I am so stiff, and in so much pain that I can barely get out of bed. I need help just to get up to use the bathroom. This is no kind of life right now, and no one seems to want to help me. It isn’t as if I go to the ER every other day complaining of a headache or sore back, just to get a fix. I have a legitimate disease, with a legitimate diagnosis, and legitimate complaints. I am so sick of not being heard, and being treated like a drug addict. I am feeling so disenfranchised, and marginalized by the whole medical community, that I am getting depressed and desperate.

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