TERRIFIED TO MOVE. I'M IN A CONSTANT FLARE UP NOW
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Yes, it's true I'm in a constant flare up now the better of 2 weeks now. Last night I decided to sit up on my couch for a few minutes to caress my 17yr old ailing cat with lung cancer with my right hand as he laid on my lap. Sitting really is something that I cannot do but for a few minutes if that. I raised my left arm to tuck a pillow behind my head and the already existing flare up and muscle spasticity in the left side of my head, back of my head, whole entire left side of my face, left ear and ear drum, my chin, NECK, shoulders (especially my left) upper back, left arm and hand, and my chest went to a pain level that I wish I could find the right words to say. The muscle spasticity (constant muscle spasms) in all of the places I described increased as well. For the better of 2 1/2 weeks now the flare ups are around the clock with all of these areas in a bright red burning state. For a few weeks my left top of my foot has been mildly burning as well. My right hand is changing colors now and the constant muscle spasm in my right bicep is certainly a sign that eventually it will be fully affected. For those who know my full story of my diagnoses and Craniovertebral Instability surgery this is unbearable. I'm trying as hard as I can to deal with all of this. I find it important to write this for my own personal notes. If I can find the courage while suffering I do know that I should journal my notes instead of having to rewrite again. At least what I have posted will help, maybe find a way to just print off my post. A special thanks to allaroundanne (Lynn) who has given special advice and guidance. Making a new move to find help in this extraordinary and excruciating condition seems to be impossible but there will come a time in the very near future that I will have to do it. I mean leaving SC for help. Everything I have studied about my multiple diagnoses and what I've been told by the so called best in Charleston SC tells me there's nothing that can be done. I cannot do "ANY" physical therapy in this condition. I have 3 docs that agree but have no solution and not even prescribing me meds. Psychiatry, if I find a good one is something I'll be working on. SOMEONE NEEDS TO SEE MY PHYSICAL STATE. SOMEONE WITH KNOWLEDGE. Thinking about calling John Hopkins Hospital, I don't know. Anyway that's enough for now.
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allaroundanne ROCKY_BALBOA
Posted
I went to Hopkins Undergrad, my ex husband did his anesthesia residency at Hopkins, their pain clinic wasn't well established back then- the early 90's. The University of Virginia is probably closer to you and has a world renowned pain clinic, plus theirs is tied into a whole subset of clinics, including psychiatric and also has active support groups for pain patients. As I said, a teaching institution is more likely to find answers for you as you are so complicated. I didn't think you could travel very far, but if you are thinking Baltimore, I think that Charlottesville, VA would be a better experience for you. It has been an established pain clinic from the time that pain clinics first started. They will most certainly help you.
I had a very special cat friend with cancer. Her name was Nannie. She died at age 15, I kept her alive with the help of some very caring veterinary cancer docs. When she was first diagnosed by a regular vet I was told I had but a brief month or two. Those cancer docs got me two more precious years. I can tell you one word now from the other end, Pictures, lots and lots of them. I can't tell you how many times I look at those now. Just keep your cell phone nearby and whenever you think of it, snap a picture of your cat. Nannie brings me a smile now on my worst days and she's been gone over 3 years. Her replacement kitty is still busy being a crazy kitten, I need a few years for her to slow down to be a lap cat. Oh and to quit biting LOL..