Archives for posts with tag: Conditions and Diseases

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.

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