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Thread: Lost, Angry,Worried ,ETC

  1. #1
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    Default Lost, Angry,Worried ,ETC

    Hi folks - Sorry I have not been around - I have been very ill with no energy, throw in the fact that my partner is ill (I don't think losing 20-30# in 2 months time is normal at all) Doctors for the most part don't seem to care. that and all our docs except for one of mine is an hour away. I am working to just stop drinking and was doing well, until I got the letter from guess who The VA - saying they are going to be re-evaluating all non-cancer patients on high opoid doses - is 90mg. a day considerered high? that set me back for about a week but I am making progress again - and I never drank that much to begin with. two or three on a Friday at the club nothing at all a bunch of days during the week. Very worried about my partner - the stress is killer. Hope to be around more. BTW has any heard of therapy in which a guy was in a BAD M.C. wreck had a plate put in his arm and then had it rebroke WHILE HE WAS AWAKE? THIS SOUNDS Sadistic.
    Blessings to all and hope every one is doing better
    Alex44
    Blessings
    Skypilot

  2. #2
    Community Member Lil E's Avatar
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    Hi Alex,
    Supposedly they are setting up guide lines for opioid use for chronic pain patients. They have realized that punishing compliant people just to keep it out of the hands of addicts isn't fair. I'm so glad I don't have to go that route any more.
    If no pain, no gain is true, where is everything I should have gained?
    DDD, Fibro, CFS, pain for 20 years. ADR c 5/6 Feb. 2018 doing well.
    Back to pain management, fibromyalgia getting worse.

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  4. #3
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    Sorry you are going through this all. Yes, in my area as well they are restricting and even cutting off opioid pain meds for non-cancer chronic pain patients. It depends who you ask as far as what is a high dose.

    No matter how many treatments they have failed, how well their pain is controlled, steady dose for years, etc. My Methadone dose was cut by 2/3 after a short stint on Suboxone (didn't go well at all). However, it turned out very well for me after a very very rough month or so. My pain is no higher than before (although I'm surprised to not have less side effects). Best wishes.
    Kate
    Constant headache for 10 years and other chronic health issues

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  6. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Alex)))))) ~

    What would happen if you took your partner to the nearest ER, presenting with severe weight loss, as well other symptoms? Is there a Catholic hospital near you, committed to caring for everyone, who comes through their doors? A University hospital?

    Losing 20-30 lbs in 2 months is not normal, and is probably not just the result of stress, unless your partner has stopped eating.

    Does your partner have insurance? Does your partner qualify for Medicaid? If so, has your partner applied for Medicaid? I'm just trying to think of options for your partner to get the appropriate care right now.

    Does the VA letter offer a phone number for you to call if you have questions? If so, perhaps you could try calling that number, and wait and wait and wait, until someone actually answers, then tell your story and ask your questions about how this is going to affect your treatment. It's a burden, and it is so annoying to try to connect with any government agency, but if you persist, you might find someone on the other end of the line, who will care about you and help you. You might not. But you won't know until you try.

    While I don't have the same issues that you do, nor do I deal with the same agencies, I have spent my entire adult life battling bureaucracy, and I do know how frustrating that is. But I have learned that the squeaky wheel gets the grease, and that means that we have to keep pushing forward with these agencies to meet the needs for which they were created. Your needs, your partner's needs, my son's needs, etc.

    Sending up healing strengthening prayers for you and your partner that you will be able to get the health care that you need.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  7. #5
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    Thank You for all the wonderful advice. She has been to the E-Room but this was before the weight loss. Even the hospital here is a joke but we are grateful for what we have. She is seeing a nutrionist/dietician to see what can be done. She is already Gluten free and evidently not tolerate Citrus. Folks, I am scared - the wieight loss, I hate to say, but my avocation is medine can point to the big C - we have ben together for over 25 years. I don,t know how I would carry on. Please pray for us. Thank everyone and I hope this finds everyone doing as well as they can
    Alex44
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    Skypilot

  8. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Alex)))))) ~

    There are many causes for weight loss, not just the Big C. Issues with thyroid and adrenal glands, autoimmune disorders, gluten intolerance, vitamin deficiency, medication side effects, digestive and intestinal disorders ... a long list of potential culprits for weight loss. It's great that your partner is seeing a nutritionist, and I hope that she will recommend supplementation with a protein shake or something like Ensure.

    Does your partner have a physician? If so, then she needs to consult with the physician, who should order an assortment of tests to determine the cause of her weight loss. If not, then perhaps she will get some attention, if she does go to the ER. If she doesn't have insurance, I sure do understand her and your dilemma. I didn't have health insurance for 30 years. So, I encourage you to investigate any options, like Medicaid, or ACA programs, so that she has coverage.

    Also, I encourage you to advocate for yourself and your partner. Contact your state and federal legislators, your Governor, the President. Write letters, describing what you're both going through with your health care coverage, the medication laws, the VA, etc. Or send emails. Or make phone calls. Or do all of those things. Our elected officials need to know how our government agencies and programs are failing us. If we don't tell them, we will never be heard or recognized.

    Be proactive. Let your voice be heard as much as possible. Use social media to your advantage.

    That doesn't guarantee that you will succeed. I've been watching the struggles of 9/11 first responders, whose health care coverage expires next year. A group of first responders visited Capitol Hill legislators, along with Jon Stewart, to beg for an extension of their very expensive care. It's not right that they should be forced to beg, nor is it right that you are forced to beg as a Veteran, or even that I'm forced to beg on behalf of my children. But if we don't protest, no one will know our plight.

    Keep your faith and let it strengthen you. Don't give up.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  10. #7
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    Alex, sorry to hear of all that is going on and I hope things start getting better. Having chronic pain is stressful enough without all the other things going on. I would like to take all the politicians, bureaucrats, and doctors that seem to think cutting our opiods back is a good thing and give them some excruciating pain and tell them they don't need pain meds. I sure hope LilE is right because the gov't cutting our meds is a crime no matter how many idiots hurt themselves illegally using our meds.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

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