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Found 5 results

  1. Dear Blog, It has been a while since I wrote anything. I use my phone now for internet stuff since my tablet with keyboard is never charged up. I have held things inside. I was wrestling with myself. I was too tired, or in too much pain to think. And people get tired of hearing it...and I get tired of thinking it. I am grateful I recovered from that awful flu, which turned sinus infection. It postponed the spinal RFA until I was off antibiotics and all well. 2 months late, I did get it, thank God! But that proves how much it works and helps me. I am grateful I joined a live stroke support group. It is for both stroke and TBI, only 5 people, but fun. Not anything new, but for me a chance to be around peers. They were shocked I live at long term care, but I am grateful for the help I get. I advocated loudly for better nursing care and got it, but the ombudsman cautioned me that they can evict, then I just buttoned up. But not for long. I talked to my social worker who said I give constructive criticism. I said, all I want is a nurse who brings meds on time. So, I stopped complaining to them. Lately now if any probs, I call my doctors and ask them to call here. They have straightened out things because they monitor me on the meds. That has worked. Little things are worse when I hurt and I need help. I am grateful. Do not make fun of my mint green bunny with pink rosary beads, mother of pearl rosary beeds, and evil eye beads around her neck. This is comfort central. I hug it, pray, and sure it helps. I was months with only drugs that hardly help, and I sat crying,hugging,praying. Do not shame what you do not understand. My inner child, my painful body, this CPS thing that any biofeedback thing may help.....if I would get to a biofeedback clinic....well my home remedy would be pray, music, because as anyone with this knows, screaming, upset, just increases the pain stuff. Now I must say I have full adult cognitive powers intact. Why are stuffed animals just for kids.....so I bought my adult son a small one for his desk...it is tiny dark blue. So I am having a blessed year so far.
  2. This is year 3. I still walk with a 3 wheeler. My vision is still double enough to annoy normal movement. Most important is I am still in pain. Having said that though I have made a miraculous recovery from a Lacunar stroke. Usually these improve I was told. All that did was put pressure rather than help. One doctor held up my disability insisting I would fully recover. But I have come far. I could not even sit up in bed and flopped over unaware I was crooked. I had double vision and the room rolled constantly. I could not write the way I used to. I missed my pretty handwriting but I practiced by journaling. In time it improved and my lovely signature was familiar again. The best thing was balance improved so I could use a 3 wheel walker and not need someone to hold a gait belt for me to walk. Today I can read with my 2 eyes together. I still practice. It is still better with 1 eye and I go to 1 eye. I still never do a novel. I used to read non stop all kinds. Texts, papers, fiction,bios. What deficits from stroke or from medications.???? Attention, Concentration, Memory, Irritability, Mind Missing, Groggy Foggy, Excessive Sleepiness, Narcolepsy......Talking Slow. Then the Pain that makes me a FREeeeak. Do NOt touch my right leg. No one understands me. Weird rash. All I needed was the right doctors. They said why do you change doctors so much? I insisted they were wrong dumb insensitive. And then I went to a teaching hospital. Doctors that did research and kept up to date. My weird rash was not from meds it was an aggressive invasive fungal infection that was in my nails, scalp and on my face and shoulders. I could not wear sandals and tank tops. I used make up to cover and even bandaids on my chin. It was a horror. My family thought I did have picking problem even when I denied it. I stopped manicures. I cried. I was so ashamed. Dermatologists said stop picking and suggested anyi depressants. Imagine!!! I finally went to teaching Dermatologists. I found truth. I see one regularly because it is care not a cure. Pscorisis is fungal too so which was going on? I took anti fungal pill for nearly a whole year to get normal nail, scalp,and skin. I continue to use shampoo, solution, creams to keep my skin clear and soft and most important my scalp is not itching constantly. I was not crazy or picking. The itch was real and the skin ruptures were real. Now I use antifungal products to maitain clear soft healthy skin. There were others like me. And I was prone to it. Heredity plus other things. I was innocent blameless shameless. The walking better comes from constant therapy and exercises. But I could do better. Pain holds me back. It is barely held in check. After 2 Radifrequency Ablation Spinals, no long lasting improvements but it helps for a couple of monts due to the spinal anesthetic that lasts a while. But I have a pain doctor who speaks my language. I said You know about touch burning my leg??? And other crazy sentences! I was typical? In your world of thalamus and surrounding brain area damage survivors where we talk about pain that is never eased by medication and ultra sensitivity to stimuli, even air hurts, and clothing....I prefer soft or legging pants or shorts. Nothing can rub. No jeans ever. But now I have tried every opiate group and a cocktail regimine that no other doctors outside the secret circle of CPS physicians understand or condone. My visits to urgent care or an ER result in my routine disrupted and the docs hardly believe I tolerate or survive the dosages or the meds. They refuse to give my cocktail. I am appalled at this same teaching hospital where my awesome doctors live, that an ER community is so ignorant about CPS. But my attitude has changed. Instead of feeling like an alien drug seeking freak psyco, I shame them for their ignorance, name drop my world renowned neurologists to make their heads spin and degrade their degrees and puny jobs, and insist by screaming earlier than I used to before it is 10++. Emotionally I have changed. I have accepted that my colleagues and friends have moved on in life and careers while I am frozen in ice now an ice queen of stroke. ok I improve that visual by seeing myself in a long white fake fur standing next to my walker with a silver back pack hanging on it. And one of those blue eyed Alaskan Dogs no maybe a white wolf next to me. Anyway I appreciate my journey without pity. I envision myself even better than I was before perhaps better than them in the real material world. I am freedom in my restrictions. If you get that then you have gained from loss and isolation. I am not a wild dog in rage but there is a river of anger that drives purposeful motivation. I can control my emotions because I expressed and deallt with and became master Queen of the deepest most powerful of them. Yet I allow myself vulnerability to cry weep over disappointing stagnations in recovery and lack of power in my life. Therefore I refuse to be bullied and engage in small power plays because those are the deadliest. But I improved slow and I still want more. I want resources access to therapy so I insisted sought out. I seek still. But I am lonely. For creatures like me. But I am hungry for information, challenge,accomplishment, goals. I am more open minded. More spiritual. I regained my faith. But more settled. I speak my mind. I despise bossiness and applaud those that recognize we only ask permission for anything from everyone. I am now more than a mother which defines me forever. I am myself. But I live more alone in a crowded dorm of those cast outside of real life. We are more real in here. None of us fear death in the same way as we did as young clinging to life's moments people we were But we live much more in a moment. It is not just pizza.If you understand then you have grown out of the physical world. As I recover I may not regain all but maybe that leaves room for other things.
  3. As the heading says, this was the way it was. Yesterday the bloody long steep hill......today it was the 15 minute walk before spending a horrendous 15 minutes pounding up and down steps of the race course grandstand. The calf muscles felt it first, then the knees. And then it was the lungs and heart. But.....I feel better for it.....or so I like to think. And today I remembered the chest/heart monitor and the wrist gizmo. Sadly, I forgot I was wearing them until late afternoon! ;-( Tomorrow I do the brisk 30 minute walk. And then it's back to the bloody hill again. And I am doing all this torture in the named of medical research. Though I admit that I am also doing it for the betterment of my health. I also went to the library today and borrowed a book called "Pain" which initially looked like a kids cartoon type of publication.....but as they say: Never judge a book by its cover. It's damn good. Can't remember which ppl wrote it, but as it's in the study some distance away, and as it's after 11.00pm, and as it's bloody cold....you will all have to wait until tomorrow when I get myself out of bed and blog again. Then I can give you all the details. G'night zzzzzzzzzzzzzzzzzzzzz
  4. My friend was close by my side yesterday. He was winding his way through my back, my neck, my head and my eyes. He was especially angry, and when angry he is efficient and merciless at what he offers to me. His offerings are so abundant that he, Pain, literally overflows and cannot be contained within me. When pain overflowed yesterday he became confusion and anxiety. How can I explain being so overwhelmed that I don't recognize familiar places? I am exhausted and wanting sleep but Pain keeps me between the sweetness and comfort of sleep and the full awareness that he is crawling through the synaptic web within my body; angrily setting nerves on fire. Yesterday Pain performed with such expertise he even struck fear into the heart of his accomplice, Nausea. Even the powerful and debilitating nausea dare not show his face when Pain, is slithering wild and unabated through the nerves of my body. Even Nausea, his dear and close companion dare not tread on the purity of Pains exquisite work. Pain is master, pain is king. Only the Lord of Hosts will he bow down to. Only the Lord of Hosts can turn him to the infinite nothingness that he will one day become when I am free of him. But today, today my sweet Lord, has chosen to allow the demon to run free.
  5. alpinejunkie

    Pain

    I guess I have to start writing about my Pain. I have my wife, kids, family and friends I can count on. But my Pain is my constant companion. It is the one that never leaves me alone even for a moment. I am never by myself thanks to my companion, my Pain. When my Pain demands attention I cannot provide; it overwhelms me like spoiled child demanding attention and gives birth to its sibling Nausea. The last couple of days Pain has been demanding. He has surged as nerve pain from my head to my feet and back again. Sometimes he settles in my chest and moves along my esophagus and my collar bones and the back of my neck. He has called his sibling many times the last couple of days. Pain and Nausea have combined, faithful, constant and relentless companions of mine, my head ringing so bad it affects what I can hear. Why these companions have chosen to be so committed to me I don't know. And why withing that commitment is there so much determination to savage me.