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Thread: "I just want a life"

  1. #11
    Senior Member Sad Eyed Lady's Avatar
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    It feels sometimes like humanity has gone out of medicine with insurance companies making so many of the decisions about care. My thoughts go to you along with all the others here for a solution to this that is the best for your mom. And as BikingLady said, take care of yourself too at this time.
    "Like a bird on the wire, like a drunk in the midnight choir, I have tried in my way to be free." Leonard Cohen

  2. #12
    Moderator Float On's Avatar
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    I'm so sorry.
    Float On: My "Happy Place" is on my little kayak in the coves of Table Rock Lake.

  3. #13
    Senior Member CathyA's Avatar
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    I have had quality of life problems all through my life. My joints are bad, my muscles hurt for no reason, my neuro system is over-active, etc., etc. Recently, I was having joint/muscle problems and got a knee steroid injection. They say it's not supposed to go systemic, but mine certainly did. After the initial couple days of freaking out with anxiety (which can be normal with steroids), my life became perfect........No pain anywhere.....at all. That lasted about 10 days, and it was probably the first time in the past 25 years that I was pain free. I was in heaven. It eventually wore off and I wouldn't do it again, since it can make joints worse.

    But to get to the point.......I truly thought "why is this treatment (steroids) not considered okay for people who are terminal? It seems like such a compassionate way to deal with pain and depression of terminal illnesses.

    So Freshstart, I'm hoping that your mom can get the feelings I had when I was on it for a short while. She just wants some relief and I truly hope she can get it.

  4. #14
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    I don't understand why she does not qualify for hospice, as this certainly sounds like it might be appropriate? Can she not have the expensive breathing drug if she is in hospice?
    Might this be a good time to reevaluate doctors and consider changing?

  5. #15
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    This is so ridiculous. Your Mom deserves quality of life and it would be so scary not to be able to breathe. Hugs)

  6. #16
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    she probably qualifies for hospice and under new Medicare guidelines hospice has to pay for comfort meds no matter how expensive they are, her breathing med would qualify. But we only have one local hospice and it's up to the hospice medical director who comes on. Last time they rejected her because of the med even though I pointed out they were obligated to pay for it. They said they'll take her when she is willing to stop the med, which would give her two weeks to live once she stops it. She's not ready to do that and she wouldn't let me appeal the decision with Medicare because she wants a good relationship with them once she is ready for hospice. She got screwed but she wouldn't let me do anything about it.

    If her doctor refuses the prednisone or at least the celebrex and doesn't make a home visit in a timely manner (we've been waiting months), I'm going to suggest to my mom that she switch to the one group of doctors who make home visits. But I don't know anything about them or their approach to end of life care.

    I'm able to do self care because I am disabled and we live together so I'm not working and then rushing over to her house everyday. It's emotionally wrenching but I have a great shrink.

    thanks for all your kind words

  7. #17
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    freshstart, so sorry to hear about this. Prayers going up for all in the situation for the best judgement and outcomes for the situation. Did the Dr at least put your Mom back on the prednisone and/or celebrex?

  8. #18
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    neither yet

  9. #19
    Senior Member JaneV2.0's Avatar
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    Aren't there doctors who specialize in pain management? Surely your mother's situation calls out for that.

  10. #20
    Senior Member catherine's Avatar
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    Quote Originally Posted by JaneV2.0 View Post
    Aren't there doctors who specialize in pain management? Surely your mother's situation calls out for that.
    Good call.

    Best of luck to you, freshstart. It's torture watching loved ones suffer needlessly.
    "Do any human beings ever realize life while they live it--every, every minute?" Emily Webb, Our Town
    www.silententry.wordpress.com

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