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Thread: What to do!!!!????

  1. #1

    What to do!!!!????

    Our family member has been hurt almost 10 months now C6 and we don't understand her pain or what she is going through, but when she first came out of rehab she was really about trying to get better and she has every piece of equipment in the house anyone could ask for (brand new standing frame, total gym, estim machine, fes bike) and also has a great rehab that has an auto ambulator. Has weaned herself off most of her pain meds but now it seems like she has regressed. She got a blood clot and now she wants to be treated like a baby. For the last 2-3 months she just doesn't want to do anything unless she says so. She cancels therapy at the last minute because she is constipated or because she is having nerve pain. Again I don't know her pain, but we all keep saying to her there are people who would die to have everything you have and be able to go the rehab that you go to to get on the AA and you decide at the last minute it's cold outside, it's raining, I have nerve pain, I'm constipated. I don't like my van driver. I told her it's a blessing that she feels the pain that she does because technically she is not suppose to feel those things at her level. I'm afraid that the rehab is going to boot her and then Medicaid will stop paying because she cancels so many times. Her equipment sits in a room collecting cobwebs and she is content having us feed her and having my brother pick her up. We are getting so frustrated and don't what more we can do to push her. Months ago she was able to move her toe if she concentrated and then she was also able to move the tip of one of fingers if she concentrated and now she says it's to tiring to try. My brother is tired of pushing her to exercise so he just does what she says. She was a "princess" before the injury and has continued to bark orders at people now even when we are exhausted and trying to do the best that we can to take care of her. when I visit to relieve my brother I am non-stop moving until the time I leave at 1:00am. When she is in pain she just lays and the bed and screams like bloody murder and brother just runs and hides and half the time I don't believe it's honest pain because I see no tears. It's like she wants to punish us for her getting hurt. My question to those of you who are hurt - if ou are in pain do you lay in the bed and just scream for hours. We tell her we don't know your pain, but you make it worse by laying there and screaming. WE just don't know what to do anymore. She tried therapy - didn't work, they put her on anti-depressants and that didn't work, but remember she was like this before her injury, but we thought she would have change some. Help what do we do?

  2. #2
    I can't speak about most of it, but I can speak about the pain.
    I didnt cry tears, but I do know that at one point I just had enough.
    I would cry out in pain when it hit me. It seemed to always hit in waves.
    I remember my brother yelling at me once about how he couldnt sleep and all I wanted was attention. It wasn't until a couple years ago when he himself went to the emergency room with a bad disc that he experienced some of what I go through on a daily basis.
    The pain, it's probably real. When you get tired, or have a fever you get even more annoyed with it.

    I learned to deal with it. Some use meds, some don't.

    Sorry your having to go through this.
    Rick Brauer or just call me - Mr B

    http://www.riseadventures.org

  3. #3
    Rbrauer - thanks for your comments. I do know that when she is in real pain I do see her cry. She is on Lyrica and has been since the injury she takes 6 a day throughout the day. She is the type of person who feels she should have no pain at all - not even a headache. Unfortunately she had this attitude before her injury so it is magnified 100 times now. When I don't come to visit because of other family issues (my nephew in rehab, my 21 niece running off to Florida to be with her boyfriend, or me trying to have a social life) she says "I'm the one that is paralyzed tell them to get in line". So then I start to feel guilty. I'll just keep praying. I really feel for my brother because we can escape and he can't.

  4. #4
    "I'm the one that is paralyzed tell them to get in line".

    Ouch! Sounds like she's having a bad moment of adjusting to reality.
    Being in chair doesn't make you special, it just means you do things differently. You cant' change the past, there are some things you simply have to accept in the current situation. If you don't like it, do what you can to change it because no one else will.

    How old is she? She may need someone to be frank with her and make her do things.

    Waiting on others to chime in on the thread....
    Rick Brauer or just call me - Mr B

    http://www.riseadventures.org

  5. #5
    You can't judge her pain. I know you don't mean to, but you are. I hear it when you say "She is the type that wants no pain, even a headache." If she is laying there screaming, she is hurting. Most AB's have no way of understanding constant unrelenting pain. I remember crying in the cold damp Houston winter because I needed to go to therapy and my hands hurt SO BAD. (Still do.) That kind of pain is no blessing. It's a trick of the nervous system and doesn't indicate any type of spared cord. So you're off when you tell her to be grateful for the pain. That is a common misconception people have about SCI.

    That said, a princess will always be a pain in the ass! I see over and over again, people take the injury as license to abuse loved ones. It just isn't!

    Is she in OT or just PT? There is more to rehab than physical training. She should be learning how to cope with a drastically altered life. My therapists chewed me out for letting my husband dress me at that stage. It was an eye-opener. They were right. The more I did it, the stronger I got. Soon it was 2nd nature.

    She sounds to me like she needs more drugs. I did, the first couple of years. They were the only thing that enabled me to work out hard enough to maximize recovery. Has she tried Neurontin? It helps many people w/ the nerve pain. I took hydrocodone at that point too. She may need a change of antidepressant. For some reason Paxil helped my rehab roommate at that point. She wasn't eating because of pain. Your relative may benefit from counseling. Also, get her out to do things she loves. Shopping. Movies. Eating out. Whatever. I remember my bff taking me to see Les Mis, and going trick-or-treating w/ my son. People have to be shown that they still have a life.

    Girlfriend has a lot to learn, SCI has a steep learning curve. If she's smart she'll get busy and do it. If she were my relative and treated me like a servant, I'd say "This is when I leave you and go about my life. If you want something, all you have to do is ask kindly and respectfully. You are not a child and yo mama don't work here." Repeat as necessary.

    OMG this is ridiculously common, people acting like this!

    Also-Get her on CC. We can help.

    Also-She probably doesn't want to go out while constipated b/c she fears crapping herself. That is a real fear, and real legitimate. Some brainstorming...What do we do if it happens? Might help. I had a peer counselor that talked me through that.

  6. #6
    Great answer Betheny!

  7. #7
    Quote Originally Posted by Lindasue
    , but remember she was like this before her injury, but we thought she would have change some. Help what do we do?

    This is the most telling sentence.

    The injury doesn't change the person only their vertical height.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  8. #8
    Senior Member mr_coffee's Avatar
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    SOunds like she's depressed.

    I felt the same way, I was all happy in rehab thinking everything will get better once I leave but when It wasn't getting better and I got home I went into deep depression.

    I also kept trying to find excuses not to go to therapy, somtimes you get sick of the same old stuff.

    I got on anti-depressants and it really helped me, I started going back to therapy and had a better out look on life in general.

    I'm off them now but they were def. needed at the time.

    She needs to keep her mind busy, does she go to school or can she go to college?
    Going back to college really helped me mentally.


    How long was she on the anti depressants and what mg and what type?
    anti depressants take a few months to start working and depending on the person you may need more or less.

    When I had insane nerve pain I wouldn't scream but it was constant, it just didn't go away.


    So what it sounds like to me is, she is super depressed, hates her life, hates what she has turned into due to her injury and now she is trapped, so she has no escape, if yoru put in that position you'd be sceaming bloody murder 2 until you realize this is your life and its not going to change. SHe's only 10 months post, she's still adjusting to the suck.
    Last edited by mr_coffee; 10-25-2007 at 11:35 AM.
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  9. #9
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    Red face

    I think you hit the nail on the head when you described her as a "princess" before her injury. It is my belief that people essentially hold onto the same character traits that they demonstrated before an injury, meaning if you were a diva before you are going to still be one, but now with the enhanced capabilities of making everyone else's life miserable because you experienced something dreadful and eveyone else should pay for it. Obviously there is a major depression going on, and while she may have found little or no efficacy in one anti-depressant that doesn't mean the seach for psychological/pharmaceutical help should stop there. It is not uncommon for some anti-depressants to work better for some people than others. She sounds like she also needs to be in a support group. I don't know if where you live there are disability support groups that she can attend in person, but I agree that it would be nice if you could get her involved in this forum. I feel sorry for her because I am sure she is in pain, but it either needs to be better managed medically or (I suspect) with counselling and peer support. I once had a hospital roommate who screamed 24/7, and if it makes you feel any better I wanted to stuff a rag in her mouth eventually. OK, so maybe I am admitting to a lack of empathy, but it nearly drove me over the edge myself.......

  10. #10
    Lindasue,
    I am so sorry that your daughter is choosing to act like that. Yes it is a choice. Can I ask how old your daughter is? As far as the pain goes, maybe because of the fact that she never liked pain in the first place and now has to deal with constant pain, she is even more on edge. That is understandable however, not to the point of giving orders to family members. I counter what Betheny said. You can't just let her lay there but you can't give in to the servent role either. This will not hellp her in the long run.

    Becky,
    chicago
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

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