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Thread: OMG--How can people live with out knowing about their injury.

  1. #1
    Member Becky's Avatar
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    OMG--How can people live with out knowing about their injury.

    Sorry guys, but I just had to vent somewhere. I have been chatting with this girl for a few months now. She is SCI and knows nothing. She has been injured for 8years and doesn't even know her level of injury. She needs someone to cath her, and didn't even know what a bowel program was. From what I could gather she is in diapers24/7 for bowel incontinence. COME ON!!! I totally understand people using them as back ups, but to just have no program and live like that!!!!! I am shockedthat her parents and doctors have let this situation occur. She is totally capable of doing this all by herself(She is a T injury or lower from what I gather. She says waist, so I figure T12 or lower maybe??) It saddens me to think that this girl is living her life this way. I begged her to look at this site and spinalinjury.net, but I am sure she won't . I think she is angry with me, but I told here it scares me that she knows nothing/does nothing about her SCI.

  2. #2
    Senior Member Jeff's Avatar
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    Wow!

    This is indeed truly sad!

    I agree one hundred percent. Her life must be less than half what it could be. Maybe we should all send her emails telling her our stories...

    I'm glad at least you are trying to help her.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  3. #3

    Be careful

    I know this will sound too weird to be true, but some ppl go online pretending to have a sci -or another disability- and they really don't. It's amazing how many i've run across over the years i've been online. Big red flags i look for are just what you mentioned---not knowing level of injury, and no bladder/bowel care...they seem to get their jollies talking about private stuff like that, or rather, getting you to talk about it. Be careful and don't give any personal info to this person. If she has questions/problems, give her the url to this site and suggest she ask the SpinalNurses. If she's a phony it will become obvious very quickly on a msg brd frequented by ppl who really are sci'd.

  4. #4
    Becky, I agree with Nan2u. Be careful. I find it hard to believe that a person could be so ignorant about their spinal cord injury after many years. Something is not right. Wise.

  5. #5

    women

    Its very sad, but women seem to be prey for this. People have sick delusional minds. be careful.

  6. #6

    Sadly too common

    I am seeing more and more people who had either NO rehab or poor quality rehab where they received little or no education about their body and their injury. Some insurances are sending people with new SCIs to subacute (code for nursing home) "rehab" programs which deal nearly entirely with joint replacement and stroke patients, and where they may be the only SCI patient seen there ever. This most often happens with women, older people and racial minorities in my experience.

    In addition, even if the person was sent to a real rehab program (again often with little or no SCI expertise or experience) people are often emotionally not ready to learn during the average 3 weeks (national average is now 19 days) of inpatient rehab that people with new paraplegia are receiving. When they are ready to learn something, they are home and often without any resources or follow up care that could provide them with this education. It is shocking to see what was not taught to them.

    Of course this does not rule out the motivated and self-directed person going out and learning on their own, but some people don't think like this. Obviously the people on this board are more this way....this is why they are hear helping others and increasing their own knowledge. It is best not to judge others until we know more about their own individual circumstances.

    (KLD)

  7. #7
    Originally posted by Wise Young:

    Becky, I agree with Nan2u. Be careful. I find it hard to believe that a person could be so ignorant about their spinal cord injury after many years. Something is not right. Wise.
    This chica needs to raise up and educate herself!! I mean, FAWK, if she's T12 she could be all world. I agree it may not be her fault, but the fact of the matter is she is now going to have to go get it. I had to, to a certain degree. At this point, it's her own fault for not educating herself. There's info out there, even if you live in BFE.



    Click here to visit my phat site

  8. #8
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    Things that make you wonder...

    Hi Becky,
    I think I might have run into this person also. Once I started pointing out inconsistancies in the story, the person broke contact. The details you have given are close to those I remember. (not knowing level but using the description 'waist down'- diapers- talking about needing someones help for everything) I'm pretty sure he/she is a 'pretender'. Don't let that stop you from helping others you find and guiding them here if they haven't found this site. You never know when you will make a big difference in someones' life!

    Cheer!

    M.Elston SCI Mom to 15YO incomplete L2-3

  9. #9
    Senior Member TD's Avatar
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    Originally posted by SCI-Nurse:


    In addition, even if the person was sent to a real rehab program (again often with little or no SCI expertise or experience) people are often emotionally not ready to learn during the average 3 weeks (national average is now 19 days) of inpatient rehab that people with new paraplegia are receiving. When they are ready to learn something, they are home and often without any resources or follow up care that could provide them with this education. It is shocking to see what was not taught to them.

    Of course this does not rule out the motivated and self-directed person going out and learning on their own, but some people don't think like this. Obviously the people on this board are more this way....this is why they are hear helping others and increasing their own knowledge. It is best not to judge others until we know more about their own individual circumstances.

    (KLD)
    If you have read my posts and replies you will find that I am still learning about my SCI. I was sent to a reputable rehab center before I was done healing from my other injuries and spent 6 of the 8 weeks allowed for rehab by my insurance company healing my crushed legs, learning to breathe again without the trach I was fitted with when I broke every bone in my face, and learning how to transfer in a halo brace even though I knew how to use a slide board from friends who have SCIs. By the time I was out of the braces they substituted my for casts on my legs it was time to prepare for my discharge. I learned how to cath after I was out of my halo and bowel care was something I developed on my own reading the "signs" from my body. I did not know what dig-stim meant until I pieced it together from reading posts at the various websites I frequent.

    BELIEVE IT, IT HAPPENS!!

    BTW, I have lesions at T4, T8, and T11. I wish I did not know what a 14 French catheter is or how it feels to run out of lubricant with the catheter only half way up (I am male). And I know what sort of fear you get when there is a noise behind you that you do not recognize and cannot turn around because of the squeezing, itchy, ironworks screwed into your head. I fractured C1 and C2 but there was little to no displacement. However, the only place I sweat is on my head.

    "And so it begins."

    [This message was edited by TD on Feb 19, 2002 at 01:58 AM.]

  10. #10
    Member Becky's Avatar
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    Thanks for everyones comments and warnings. Sadly, I feel she is being honest with me. In a way I wish I could say she was one on the many "pretenders" out there. I think maybe because she was injured at such a young age(8), her parents found it easier to do things for her. Right now she is looking ahead to college, and the only advice I can give her is to become independent. It just saddens me that a teenage girl is living this way(a low injury with an aide/parent with her 24/7). I have given her a link to this site and to many others in hopes that she will learn a thing or two. I guess all I can say is I hope she does learn to do things for herself and manage her own care.

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