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Thread: 10th year anniversary of SCI - 3,650 consecutive days of pain

  1. #21
    Senior Member
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    May 2006
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    Somewhere in the Rocky Mountains
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    8,147
    I understand and I know those struggles. I hate that you have to be here but I am thankful for the support you provide. You don't have to always be a moderator...you are human and in central pain. I think don't think any of us care about that moderator hat too much.

    I hope your wife does do that research.

    They told me in Rehab that "in 10 years...there will be a cure". That was in 1989.

    I saw this thread and I couldn't help 10 years worth of freakin' pain they told me there would be a cure for but I was just happy this week to hear someone say "I hear YOU". "You don't have to continue".....

    I sent this to best friend because she kept asking me what I meant by the burning pain. It scared her to death....

    http://www.painonline.org/acid.htm

    She asked me if I needed her to come take me to the ER.
    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

  2. #22
    Member ~Maria's Avatar
    Join Date
    Feb 2012
    Location
    Atlanta, GA
    Posts
    40
    I think a day in pain should be calculated x2!

    I had reached a point where all I did was go to work, suffer to the point of twisted blindness, go home and crawl into bed. Weekends were spent in bed. I didn't do anything outside of that....literally. I was trying to avoid being on pain meds, went the route of no pills, to tons of Tylenol, to anti-inflams, to finally breaking down and starting meds and injections.

    Social activities and planning outside of going to work was unthinkable. There were way too many days I asked myself why was I even alive! I didn't dare express those feelings in a medical setting. I was fired as a patient with a back surgeon’s office because I refused back surgery. WOW, didn’t know that could happen! Referred to a Pain Management Clinic, who insisted on painful Steroid Epidural injections and low doses of pain meds. They ask you how you are doing and when you share ‘how you are doing,’ you get that glare and look of disgust. You ask to please please please increase the dose and you get the usual song and dance of no no no no.

    About four weeks ago, I started taking an all hands approach to my situation. I switched clinics thinking this would help. Started researching these drugs, their side effects, ect. and started a diary. Switched meds to Tram and agreed to Faucet injections.

    It’s a never ending story, it’s a continuous battle……I’ve finally resigned to the fact this is the hand I’ve been dealt and I will always have to deal with the pain. I’m so thankful to have found this board and read your stories, up until now I have felt like I was on some crazy planet all by myself. I’m finding I’m not alone and I’m not the worse off. Not exactly bragging rights, but it gives me something to hang onto.
    Last edited by ~Maria; 02-27-2012 at 01:41 PM.

  3. #23
    I personally come here to "keep it real" if I may, as I have given up letting friends and fam know just how miserable I am. Any anniversary is a time for reflection, good or bad. Reflect, be honest, here if nowhere else, because we feel your pain, everyday, hour, etc. You do inspire people Arndog, something that I am working on. Now, suck it up and press on!!! ;}

  4. #24
    Thanks xtravia. I am over the anniversary, and like you said, I am suckin' it up and soldiering on.

    Thanks, Alan and DD

  5. #25
    sorry i missed this thread earlier. wow. you have been through a lot in 10 years. you are a strong person to keep such a good attitude. i fail at the latter a lot. thank you for all you do here and for putting up with all of us. i wish i could help you like you help us.

  6. #26
    Hey, Cass. we all and certainly you have been through a great deal over the decades. I have read with interest your work/pain/employment issues very carefully. I have been out of the professional work force due to pain for 9.5 years since SCI and only for the past 6 months think I have it together enough to give employment a go in a non-stressful but cognitively challenging environment. I still don't know if I can persist at full time work with pain and the future health challenges (like more abdominal surgeries) that I will have to face.

    You do help people including me by sharing your story about your dealing with your professional life and trying to manage brutal pain.

  7. #27
    Senior Member alan's Avatar
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    Jul 2001
    Location
    Baltimore, MD
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    6,714
    I've been out of everything due to pains. I don't know how the folks here with severe pain who've made lives do it, but I admire the hell out of them.
    Alan

    Proofread carefully to see if you any words out.

  8. #28
    Senior Member
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    Jun 2008
    Location
    Waterford,NY
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    464
    arndog:

    You're so right about how dealing with bad chronic neurogenic pain feels like Ground Hog Day the movie...I've long thought the same thing. I'm experiencing a lot of the same things you are.

    I have to do something for my pain...my injury was at c4/5 and was incomplete...it's good b/c I have feeling and function below my injury level but not so good b/c I have tingling pain through all parts of my body effected by the injury...strangly the pain often causes my parts of my face/head to tingle.

    Hearing about everyone's experience with spinal cord injury and chronic pain helps. Having pain is madenning because to the outside world pain is invisible...99% of people don't understand why you are not in a great mood when you say "my neurogenic pain is killing me today"...really as I'm sure you all know it usually doesn't feel worth telling people about the pain.

  9. #29
    arndog ~ I have just discovered this wonderful forum and I feel so blessed. While I understand pain and have lived with it since June 22, 2005 it doesn't make it any easier to read message like yours. Don't apologize for your down times...you are entitled to be angry, mad, sad, depressed, etc. Scream if you need to, cry, write, punch something, but don't feel badly for expressing how you feel. I have been blogging for a year about my spinal cord injury and it has been the best thing for me...and along the way I have helped others. Keep the faith and may there be a cure for all of us very soon.

  10. #30
    mswestfall - glad you found this forum. You are welcome to join in. Thanks for your understanding also.

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