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Thread: We're the orphans even here at CareCure

  1. #91
    I'm rarely in this forum, but seeing the "orphans" title brought me here.

    My pain is significant, at a level no person should endure, yet worsens when I think about it, read about it, write about it, talk about it so I rarely go there or come here. The more I give it any attention, whether solo or with another, the worse it gets. That's something I cannot afford to encourage in my life.

    As many of you know, I left pain medication slightly over seven years ago due to addiction. Drinking alcohol with the meds in an attempt to alleviate the pain amped up my addiction. Bottom line for me: The meds and alcohol did not stop my pain, only made me not care that I hurt so much. It also meant I did not care about the rest of my life. That was evident in everything I did and did not do.

    The one exception to zero pain meds was for less than 24 hours several years ago immediately post op. I was supervised by an addiction specialist, family who handled the medication for me at a family home and/or my surgeon. I opted for ice and ditched the meds after three, half doses.

    That is not shared as a "look at me" or as any attempt to be a pain martyr. I'm not. I just felt fuzzy brained and wanted no more of it. I hurt and hurt big, but the pain was what it was: pain.

    Here's how it is for me. I acknowledge the pain, recognize it for what it is (pain), don't fight against it, don't discount its presence, but I do not and cannot make it my focus.

    These days I use meditation, prayer, breathing, visualization, distraction to the nth degree (placing focus on doing what I love most and best- creating art, spending time with family, friends and Wonder Dog, getting outdoors), living as healthy a life as I can.

    If it seems I have orphaned others here also experiencing pain, it is not my intent. I just cannot be here very often, choose not to read these threads regularly because it's inevitably going to cause a spike in my own pain levels. My pain is up from when I began writing this.

    I'll close before I invite more pain by writing about or reading too much of what others have written. I just cannot so think I'll head outdoors and enjoy the sunshine before I get too deep into it.

    Here's a wish for kinder, gentler days for us all.

    MaryEllen

  2. #92
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    Quote Originally Posted by Scorpion View Post
    I've described it as "real pain that's not supposed to be there." Because it is real; the damaged nervous system is sending screwed up pain signals to the brain. I think that's where even some doctors are so off, they think it's just in someone's head.

    Now I'm shuttin' up.
    I actually decided that my phsyiatrist got it, when pretty early on I was trying to differentiate the pain I was feeling, by referring to pain in my shoulders caused from overuse as "real" pain. (My point was I did something to the shoulder by lifting my chair into the car .... hence pain that made sense was "real").

    He responded that ALL pain was real pain, and that we needed to find a way to deal with it.
    T7-8 since Feb 2005

  3. #93
    Quote Originally Posted by LaMemChose View Post
    Here's a wish for kinder, gentler days for us all.

    MaryEllen
    and mutual understanding, whatever that may be

  4. #94
    Quote Originally Posted by LaMemChose View Post
    Here's how it is for me. I acknowledge the pain, recognize it for what it is (pain), don't fight against it, don't discount its presence, but I do not and cannot make it my focus.

    These days I use meditation, prayer, breathing, visualization, distraction to the nth degree (placing focus on doing what I love most and best- creating art, spending time with family, friends and Wonder Dog, getting outdoors), living as healthy a life as I can.
    MaryEllen, here - as you have done so often - you give eloquent voice to what is in my heart, as well. The pain is a fact of life and could easily consume all of life - but I find it is best for me to acknowledge and then work with and around it to the best of my ability. It's not an external enemy, it's the result of my body's attempts to be whole within a compromised system.

    I remember as a child, I had an aunt who was in the final stages of cancer. She was in excruciating pain. She offered her pain to God as a sacrament, and the rest of the family thought she was crazy - but it enabled her to live her life as fully as possible until that chapter ended. It wasn't that a deity willed her to be in pain, or wanted her suffering; rather, the sacrament involved a full-spirited engagement of her energy with circumstances that were larger than herself, and entirely incomprehensible. She inspires me to this day.

    My blessings to all who are on this journey.

  5. #95
    Senior Member alan's Avatar
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    I'd like to be more independent and less consumed by pain. I'd also like to be able to exercise.
    Alan

    Proofread carefully to see if you any words out.

  6. #96
    Quote Originally Posted by bollefen View Post
    i think a number of the responses validate the initial premise and even those with frequent moderate to severe pain issues mostlty don't get the totality and completeness of serious CP.
    Well, there's a finger for those people. I truly detest when doctors or people in general dismiss something because they cannot see it in a blood or urine culture. I think if every person had to once deal with something in their lives that couldn't be proven so to speak, they might understand the isolation.

  7. #97
    Quote Originally Posted by quadvet View Post
    and mutual understanding, whatever that may be
    Absolutely. A person is not weak for going the route of medication just as I'm not strong for opting out of opiates and benzos. We each have our own paths and I think we each do the best we know how to do for ourselves as individuals at any given moment.

    I've read some of the I hurt worse than you statements in the past or may read it again in the future. Perhaps that person does hurt more or perhaps I do, but it is one of those things defying objective quantifiable measurement here. Because I do not know another's pain in relation to my own, I cannot compare. We each have our own ways of coping, of dealing with unrelenting pain.

    This forum undoubtedly helps the many, many individuals who post here, especially those who may post regularly. Those persons are assisted or would not write. Well, unless that person enjoys pain and then we are talking about an entirely different animal.

    (That was my very small attempt at humor this evening).

    Bonnette, thanks for your kind words. I left out I also use guided imagery for pain relief and relaxation. It helps me, too.
    Last edited by LaMemChose; 03-17-2011 at 02:31 PM. Reason: changed word "read" to "write" in my 2nd paragraph

  8. #98
    Hi

    I mention once again the approach at pharmacy schools, such as Univ. of Texas Medical Branch (William Willis Jr.) and Univ Cal. San Diego (Tony Yaksh, Annika Malmberg), who ask their pharmacology PhD pain researchers to permit injections of tiny amounts of capsaicin, which hypersensitizes the TRPV1 receptor (thought to be abnormally functioning in Central pain as well), in order to understand that novel pain perception is possible. The TRPV1 receptor is known to fire spontaneously when acid is present, even if there is no injury and conditions are physiologic. Central Pain is known to have an increase of fatty acids (OLAMs) around the synapses. Hence, the conclusion that the TRPV1 is involved in central pain. TRPV1 is a calcium ion receptor in the membrane of pain nerves.

    Although a subcutaneous injection of capsaicin is just in one little area and is pure and simple burning, as opposed to the MIX of pains in central pain, the experience somehow opens their minds. You will not find yourself being questioned by someone who has had a capsaicin injection, because they then realize ordinary pain is different, and that TRPV1 pain is a very real thing. Capsacin injection is no worse than a wasp sting, but the peculiar sensation is a new experience and relieves the scientist of the illusion that pain reality is encompassed by, and limited to, one's own prior experience.

    If central pain were amenable to being measured for comparative pain severity, it would also be measurable to inform clinicians that they were dealing with something very serious. Since pain cannot be measured, the public will adjudge pain levels by comparing the painful experience with their own experience and their own imagination. Since central pain cannot be imagined, it cannot be pictured/measured. As Mark Twain said, "You cannot trust your eyes if your imagination is out of focus."
    Last edited by dejerine; 03-16-2011 at 10:59 PM.

  9. #99
    Quote Originally Posted by LaMemChose View Post
    Those persons are assisted or would not write. Well, unless that person enjoys pain and then we are talking about an entirely different animal.

    (That was my very small attempt at humor this evening).

  10. #100
    I am astounded at some of the responses here. Me invalidate someone else' pain? Hardly. Scorp by your own logic you try invalidate mine. While this may seem an attack consider it an observation

    How were you tested, what is your measure of pain?

    I taught hand to hand and was a competitive full contact fighter.

    I'm a Nam vet. I've been hit by small arms fire, 2 through and throughs, one compression fracture of my back and redeployed.

    I came home courtesy of a mortar attack in which i sustained a broken back, shoulder, shattered my right knee/femur, severe burns.

    7 surgeries to reconstruct my right leg / knee with rehab after each.

    shoulder held together with wires and screws. rehab for a year for that.

    Pain was manageable, i got the 24 hour pain meds post surgeries then off them.

    I led a fine active life after Nam, and what it took to come back to activity. Still some martial arts, hiking the canyon lands, doing everything.

    But that is my measure of pain, that was my test. I never doubted anyone's pain or levels or minimized theirs or tried to measure it against mine. Why would/how could I? But this is my basis of pain.

    Lumbar finally gave up 6+ years ago and ruptured the disc into the spinal column, didn't know the severity cause I managed the pain, finally went to the doc with a paralyzed right leg no B&B, cause I tolerated pain and had immediate emergency neuro surgery.

    9 surgeries later, multiple fusions, 1 surgery with no general anesthesia, a local at the 2 incision sites T6 L5 had a laminectomy at one end and ran a canula/wires and placed an implant at the other end.

    Until CP I did not believe that a body could actually feel this much pain. period.

    I did not believe one could be more than inconvenienced by pain.

    I was wrong. I was more than humbled, I am crippled by pain.

    Validation? I don't give a rat's ass what you/ any sanctimonious POS thinks. I liken your comments to telling the completes paras and quads "well just get up I can" unable to comprehend the absurdity of the comment.

    I'm not about to try to measure up to who's the big swinging dick you seem to think you are.

    The above are observations and a continuing consideration of the original topic.

    I made an observation, many in fact. I stand by them all.
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

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