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Thread: Explaining A/D caused by pain -> Metamorphosis from a ramble to Specificity

  1. #1
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    Explaining A/D caused by pain -> Metamorphosis from a ramble to Specificity

    Used to put the heel of my sock in my mouth to pull it around the heel when it was tacky after a shower. Put my left sock on and when trying to grab my right leg, it kept going in the wrong direction.

    With one sock on and a towel on my lap, drove to the hospital where yes my right femur was broken. When screwing in a piece of metal to hold it in place, doctor told me my bones were like soap. This was ~5 years post injury, and have broken 8 bones below my knees within two years, the x-rays come out gray are dingy at best.

    Each time after a fracture the heterotopic ossification in my right hip would grow and now is like a cinderblock will a large plot of cement sticking out from the inside. It has even bruised a few times, so can only lay on my left side or back.

    Six months after discharge from rehab was again living in the dorms going to school. Would park the shower chair at the foot of the bed and my wheelchair at the side, then slide down to the shower chair, shower, back in the bed, get dressed and into the chair at the side of the bed.

    Continue to do this for 30 more years until my back gave out, (no one told me wasn't supposed to do th) is the pain went wild and the autonomic dysreflexia started. My C6 - C7 cervical vertebrae were surgically fused after breaking my neck and my lumbar are fused by just sitting there for a long time.

    The pain is my C6 vertebrae, right in the middle of the two fused sections of my spinal column, which took all the stress of sliding down the bed for 30 years. My vertebrae are disintegrating and my muscles are atrophied and my spinal column has no support. I'm a bobble dog.

    Since my injury, my blood pressure has always been low. In rehab, they took it at 42/36 sitting up, just before seeing the purple dots prior to fainting. The lowest since has been lying down at 40/28 and have been taking midronine for 20 years.

    Now that they stopped the narcotics the pain of just moving my body from my back to my side puts my blood pressure at 200/100 and stays there. If I get up in the chair blood pressure goes to 260/140.

    For the first 30 years, AD was caused by the usual culprits bowel, bladder, bones mostly from UTIs but would also get it every time after breaking a leg a bone or bad constipation.

    Have been blessed with good skin, but was introduced to A/D, when the cannons were going off inside my head,blood pressure was 300/160 and was sweating like a sprinkler out of my forehead washing off the electrodes.


    Unfortunately I'm unable to fall asleep on my back really messes things up. Have to write a letter about quadriplegics and autonomic dysreflexia, which is stressing me out because of my blood pressure hit 250 yesterday.

    Gently rubbing a washcloth along my spinal column is incredibly painful and caused A/D raising my blood pressure to 250/123 and had to get on my back and smoke a lot of marijuana to get it to come back down.

    Unfortunately, most medical professions know nothing about this since it is specific to quadriplegics and when contacted always tell me to go to the ER because they don't know what to do, there is nothing they can do .

    Do not like discussing my injury, implications and ramifications with anyone, so posted on the board in its evolution to becoming a letter. However, am a world-class whiner & complainer.

    Went to a rehab hospital where they put me on the narcotics to control the pain and blood pressure. Pain management kept changing them every month, which is not good for a quadriplegic, nor did it work.

    Will write things many times; it's my way of working through things. Some people need to talk it out, I just keep rewriting it, removing extraneous words and then usually and am left with just the facts, or a conclusion.

    Need to turn this random ramble into a letter stating that my autonomic dysreflexia is caused by the pain of my vertebrae and other bones moving against one another. My left leg is longer, curved like a banana and sure do not sit straight anymore, but I'm stuck in bed because they will not give me the pain pills to help with the pain, to help with the blood pressure to help me stay alive.

    Any revisions, comments or suggestion would be appreciated. You can rewrite a sentence, paragraph world all whole say.

    The end result is to who?

    Know the it cannot be specific to be what are other people doing?

  2. #2
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    Do you have nifedipine for emergency AD episodes? I am fortunate to have a primary car physician who respects that chronic pain sufferers may need ongoing scripts of opioids. I use very little, but am grateful that I do not have to fight for it. I cannot offer anything more, but as Bill Clinton famously said, "I feel your pain."

  3. #3
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    My dad had a stroke somewhere between 60 and 65 and it wiped out his mental capacity. Do not want to stroke out myself and become a drooler, ending up in a nursing home.

    Tired of laying in bed with my head pounding, with stabbing pains in my eyeball and whether actually have PTSD or not, live in incredibly stressful life. Some of which is self-inflicted but much is compounded by society. Most of the stress come from people not being able to handle a 60-year-old C6 quad living by themselves for 40 years, and having to fight to convince them that is what is actually happening. They want to put me in an institution so bad is hard for me to comprehend.

    If that were to happen will most likely die in less than a year.

  4. #4
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    More rambling on the way to a letter

    Actually I'm just venting but it turns into a another part of the letter even though these are just notes that I want to take to Dr.

    My dad had a stroke. ~60 and lost the ability to play chess (USCF 1735), write the guidance code to get to the moon and back. Losing mental acuity would make my life more of a living hell than it already is and would kill me within a year.

    Grandfather born 1880, died 1966, uncle born 1918, died 2010 and dad born 1924, died 2012, mother born 1933, died 2016. All the males on my mother side were killed in WWI or WWII so have a longevity gene. Do not want to be an 80-year-old quad.


    It appears that as a C6 quad who lives by themselves for 37 years is an anomaly. Used to change my own sheets and put sheepskin underneath it. Took out the trash and had a housekeeper once a month.

    Received a letter from the hospital medical conglomerate in the area severing any relationship because of my failure to follow medical advice. The medical advice is called a nursing home.

    This action has no real medical impact, but irritated me more than parking spaces prior to the ADA.

    Believe the purpose of the ADA is for you to continue to be an integral part of society for as long as possible. Financially independent and plan on dying in my own home.

    Going to a neurologist and making notes to take with me. Going bonkers laying in bed and can't get out because of the blood pressure from AD. Never watch television, sometimes streaming but mostly read and play chess.

    Everything is saturated with the impeachment and the media coverage is so partisan that makes it useless and have to go to the BBC or Der Spiegel to figure out what actually happened.

    Need opioids to keep the pain A/D in check so can get out of bed again and everybody keeps discharging me because of living by myself and they don't want the liability or responsibility.

    My brother is six years older and lives in a couple hundred miles away and have no other family.

    Believe it or not this will be distilled to a one-page letter as soon as its objective is known.

  5. #5
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    Dangerous to artificially lower my blood pressure because if you fix the trauma it can crash really bad when the blood pressure returns to my normal low.

  6. #6
    This is an advantage of using Nitropaste for AD management, as you can wipe it off once the AD episode has passed. Have you ever tried this?

    Your agency trying to force you into a nursing home when you clearly can live independently (and have for many years) is a clear violation of the Olmstead Supreme Court decision. Have you contacted a civil rights attorney?

    https://www.hhs.gov/civil-rights/for...ead/index.html

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
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    Quote Originally Posted by SCI-Nurse View Post
    This is an advantage of using Nitropaste for AD management,l[/url]

    (KLD)
    Never have used this or even thought about artificially lowering my blood pressure 1 because it is so low, and 2 always went to the ER the get the trauma effects 90% were UTIs and never knew it existed.

    Do not have an agency, have always lived by myself, however the main medical provider in this area has severed its relationship with me via an unsigned letter for not following medical advice. The letter came days after my appointment with the GP that I've had since the 80s, is really no biggie, but they're making the determination at 37 years post and pushing 60 can no longer live by myself.

    How can I fight a medical decision? They say find another medical provider, very sticky litigation scenario. However, it may be my last civil-rights fight before I die.

    Do not want to fight to live a life that I do not want to live. Don't want to do it anymore, tired of all the work required for quadriplegic to function. Getting up putting on a tie and driving to work for 20 years is nothing compared to being stuck in bed because of the pain.

    Have been in this nexus before and pick myself up off the floor by getting a new job (am very employable), girlfriend or even volunteer work, but now can't get out of bed because of the AD associated with the pain.

    Dragged this carcass to work, scuba diving, waterskiing, to Boston, Atlanta and LA, this body has been abused, getting from the ground to the chair via the bed or the seat in the van,

    Never watched much television and actually gave my TV to the guys who help me move 20 years ago. There are actually very few things that are enjoyable to me on the computer like to play chess, bridge, or the game of risk. Do read a lot on the computer, mostly the newspapers from Australia to Los Angeles (which I used to deliver).

    Unfortunately from the smog in India, protests in Hong Kong, peat burns in Burma, the burning of the Amazon, South America revolutions, seceding influence to Russia in the Middle East, Europe turning right wing nationalistic, England is leaving the European Union and the United States of America is politically polarized and impeaching the president, and it's getting warmer.

    After stopping breathing (didn't die) should not of been resuscitated, but that's another story, not grateful for the time I have, and that makes me feel guilty. Now know how to create the scenario and stop breathing, won't be in ICU, and it will be done. Thinking about that power scares the hell out of me, can be very impulsive.

    It sucks to read it all day and can only play so much chess and bridge. With the limits, have still been able to do pretty much anything I wanted to on my own. It is difficult for me to accept, even dinner from the girl living in my guest house who used to own a a restaurant.

    So what the**do you do, for me the pill of paralysis is bitter 40 years later?

  8. #8
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    This is the beginning, never got finished:

    Not doing anything about the autonomic dysreflexia.
    How do you treat my high blood pressure?

    Why is it able to give me narcotics when I am not in my own house is in that kind unconstitutional?

    Don't care if I die because of stroking out but do not want to be a drooler. My father had a stroke in his 50s and now in my 50s with my blood pressure going to 200/100 every day and 260/140 every other day.

    Is not treating this blood pressure illegal, unethical, immoral or just malpractice?

    Both HR and a Sea Pines and documented my blood pressure in the autonomic dysreflexia causing it. They both prescribed me the same level narcotics a very low dose.

    The Eighth Amendment to the United States Constitution states: “Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted.” This amendment prohibits the federal government from imposing unduly harsh penalties on criminal defendants, either as the price for obtaining pretrial release or as punishment for crime after conviction.

    If I commit a crime, will you put me out of my misery?

  9. #9
    Eventually, your high blood pressure caused by your AD will most likely lead to a stroke, or heart damage, or both. Certainly no guarantee it will kill you. I am not at all clear about what you mean by this statement:
    Why is it able to give me narcotics when I am not in my own house is in that kind unconstitutional?
    If you won't advocate for yourself by seeking legal assistance in this issue, you really can't expect anyone here to be able to assist you.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  10. #10
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    Quote Originally Posted by SCI-Nurse View Post
    Eventually, your high blood pressure caused by your AD will most likely lead to a stroke, or heart damage, or both. Certainly no guarantee it will kill you. I am not at all clear about what you mean by this statement:


    If you won't advocate for yourself by seeking legal assistance in this issue, you really can't expect anyone here to be able to assist you.

    (KLD)


    (KLD) in between the waves of A.D. my blood pressure crashes really really low 60/40? Have had my blood pressure go from 360/152 to 42/28. Then 1, 2, 5, 10 minutes later another wave take it up to 360/152, get the sweat for 20 minutes to a half hour, and it happens again. If I had paste should I use it and then scrape it off again in a half hour? It goes on for days.

    Sometimes it takes me a while to figure out what was causing the autonomic dysreflexia, need to first need to realize I'm actually happening.

    Yes, I've talked with the civil rights lawyer when starting this whole dialogue, I'm tired. Feel like I was hung by the neck until dead, they just cut me down too soon.

    Have met Maslow's hierarchy basic needs and will never achieve self-actualization with my pinball brain. The bottom line is I'm kind of scared that I may be dead by the end of the year.

    Have no family except an elder brother (six years) who lives hundreds of miles away in a different world.

    Would really like to stand up and stretch.

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