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We're the orphans even here at CareCure

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    We're the orphans even here at CareCure

    In reading statistics, CP / neuro to the degree we have it is rare even among SCI and most common in the lumbar region injured.

    We, as a class, get treated as poorly here by the majority, who while having some pain, do not suffer the endless cruelty of CP.

    I don't even bother with personal comments on the life board about what I am, I say hello, have a few folks I chat with, but for the most part, our group doesn't even get it and the severity of pain they suffered at time of injury is lost in time rather than relived all day every day.

    An observation. Not to diminish the few who try.
    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

    #2
    As someone without neuro/CP, I just want to give much respect to you folks who deal with it daily.

    Comment


      #3
      Last night my husband was awake with neuro/CP and I felt so helpless.
      For some unknown reason if we put his vest chest percussion on (normally use it twice a day to loosen secretions) and let it shake about 15
      minutes he gets some relief. I have no idea why and it does not always help.
      I gave him his Lyrica early and also some Ativan.
      He is sleeping now.
      It is so unfair to (unfair........what a word!) to be paralyzed, but still have horrendous pain no one understands.
      Someone here recently described sitting with his "feet in a bucket of acid."
      Sigh.

      Comment


        #4
        How can one explain a burning back that feels hard and stiff like concrete, with the feeling of a ridge of bone sticking out that pushes up to your neck? When you move, the bones rip your skin. It's not even believable. How could anyone understand that? And that's just the beginning.

        I want to have a life, friends, and less dependence. Instead, I could live another 30+ years getting worse. Bah.
        Last edited by alan; 12 Mar 2011, 7:09 PM.
        Alan

        Proofread carefully to see if you any words out.

        Comment


          #5
          I don't think any of you are being ignored. For those of us who are not dealing with the chronic pain of sci, we can't offer very much. My son does have some pain, daily, but nothing like what you all go thru. I know, I think, what the "burn" feels like. Having 2 c-sections where your stomach muscles are cut thru, the healing process feels like someone is holding a blow torch against your gut. Very painful with every breath. But what you are all dealing with, most of us really don't know what to say that would be helpful. I am very grateful that we aren't dealing with the pain. So sorry for all of you!

          Comment


            #6
            Originally posted by loreo View Post
            As someone without neuro/CP, I just want to give much respect to you folks who deal with it daily.
            same here. SCI is one thing, but to have excruciating pain on top of it is just wrong.

            Comment


              #7
              Thanks for posting this thread about the chronic, severe pain you and others with neuro-cerebral palsy (CP) endure. Personally, I think CP is one of the least understood of neurological disorders. When you find particularly good articles about CP, I think it would be a good idea to post them for us to read. We will all benefit from broadening our knowledge and understanding

              That said, we have forums: (the last two don't have any submissions)
              Tranverse Myelitis, Multiple Sclerosis, Non-traumatic SCI ALS, MS, polio, stroke, and other non-traumatic causes of spinal cord injury

              Neurodegeneration Research ALS, Parkinson's, & Alzheimer's disease

              Multiple Sclerosis Research Recent research on multiple sclerosis

              But none of these forums appear to be a good fit for information and exchanges about CP. Dr. Young, Moderators, and Administrators, is there a possibility to add a CP forum?

              All the best,
              GJ

              Comment


                #8
                CP in this case is referring to central pain syndrome.
                Alan

                Proofread carefully to see if you any words out.

                Comment


                  #9
                  Originally posted by alan View Post
                  CP in this case is referring to central pain syndrome.
                  That is what I was referring to.

                  Then there is BP.
                  Bowel Program
                  Blood Pressure
                  British Petroleum
                  Bi Polar
                  Batting Practice........

                  Comment


                    #10
                    CP (central pain) makes you a CP (couch potato) unable to concentrate on the simplest CP (crossword puzzle) and makes you into a CP (crazy person).

                    Comment


                      #11
                      This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

                      PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

                      GJ

                      PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!

                      Comment


                        #12
                        Originally posted by arndog View Post
                        CP (central pain) makes you a CP (couch potato) unable to concentrate on the simplest CP (crossword puzzle) and makes you into a CP (crazy person).
                        Haaaaaaa.

                        Comment


                          #13
                          Originally posted by gjnl View Post
                          This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

                          PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

                          GJ

                          PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!

                          Um....OK. Sorry.

                          Comment


                            #14
                            I dont think it matters it people totally get it. I have a diagnosis of central pain syndrom that I dont agree with because my incredible belly pain that they think is cp, responds to pain medication. the burn and broken glass feeling in my feet, the skewer stabs in my fingers and toes, does not get better with pain meds.
                            I found I think, that its kinder to spare my friends a family the description of my pain.
                            they know its really bad sometimes. I dont need to say. Im quieter and less active, and hold my breath alot.
                            and you are wrong about people here not getting it. there are a few people here with central pain.


                            im ok with people not knowing what its like to feel like your feet have been set afire. the only people I really need to get it though is my Dr's, if they didnt get I would have no control at all.


                            if only there were a way to treat neuro pain. im sorry you are hurting so badly. I know that does nothing for you, but its all I got. I do try to understand though, im sure I cant really get what you are living with though, even though I have been diagnosed with cp. I can imagine though that you are not making it up. that it is very bad for you indeed. im sorry.
                            Last edited by jody; 13 Mar 2011, 12:05 AM.

                            Comment


                              #15
                              Originally posted by gjnl View Post
                              This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

                              PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

                              GJ

                              PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!
                              Of course this is in the PAIN forum so why would YOU ASSUME he was speaking of Cerebral Palsy? I usually don't google before I post...

                              And...no he doesn't have to type a little more or define his terms...you just need to read and comprehend a little more before responding and going off or perhaps not respond at all.

                              Do you have central pain? I understand why he feels this way. Seriously!

                              Thanks.
                              T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                              My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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