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Story of dogged determination

Discussion in 'Other Health News and Research' started by voner, Jan 17, 2016.

  1. voner

    voner Senior Member

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  2. Gingergrrl

    Gingergrrl Senior Member

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    @voner Thank you for posting this and I just read the whole article. I had decided today to cancel two upcoming appts that I have in Feb and to stop my 24/7 research as to why I cannot breathe b/c I just couldn't take it any more. Every time I tried to inhale a full breath today, I felt like I was being stabbed by a knife and my back was spasming. I would try to walk a few steps and have to sit on the ground to avoid falling. I believe I have some of restriction of the chest wall that compresses my lungs from expanding and that my autonomic problems are making it worse but what it is called or how they intersect is still beyond me. I don't think it is the diaphragm although I understand this is where doctors are focused when all tests show a lung restriction.

    The state where I live has a physician assisted suicide law passed now and I started researching that instead b/c I am an enormous burden on my family and the guilt is so hard to deal with on top of the physical suffering to breathe. But your article on Jill inspired me to keep going and I am not going to cancel the two appts after all. Her determination even when the Mayo Clinic and all those doctors laughed in her face when she brought in articles was motivating and her efforts led to a diagnosis of herself, her father, and a complete stranger who she was destined to meet. If my suffering could pay off and help someone else, I would feel it was worth it but today it just felt like it was all for nothing.

    The article also motivated me to pursue getting a motorized wheelchair even if my insurance will not pay for it. It would drastically change my quality of life and I would be able to participate in things and get around my apt without someone pushing me in the wheelchair. I've talked about it off and on but I know if I had one, it would be a game changer. It wouldn't solve what illness I have but it could conserve my breathing and let me do more without burdening others to push my wheelchair just to take me from the dining table to the bathroom.

    That article showed me that it is possible to solve a rare illness and I have to keep it in mind every time that I want to give up. I am going to bookmark your post so I can find it again. Thank you again.
     
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  3. Firefly_

    Firefly_ Senior Member

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    @Gingergrrl even though it's exhausting and frustrating and for me with this Teflon coated brain it's nearly impossible, we have to be our own advocates because no one else is going to do it for us. I always told my kids the squeaky wheel gets the grease so now I'm having to practice what I preached lol. Squeak squeak. :p

    I often have to go back to my GP multiple times to get him to really listen and follow me down the garden path but eventually he does. As far as being a burden on your family, turn it around for a minute, if it was your husband or your child that had your illness and you were the caretaker, would it be a relief if they killed themselves? I personally would be wracked with guilt and sorrow.

    Keep researching, we've got nothing but time right?!?

    As far as the wheelchair goes you could post and ad seeking one on Craigslist or some other free site, no telling what's sitting around in someone's garage looking for a warm body.
     
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  4. SickOfSickness

    SickOfSickness Senior Member

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    Mine was cheaper without insurance. Copay would have exceeded what many used motorized wheelchairs go for.
     
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  5. chipmunk1

    chipmunk1 Senior Member

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    despite that..

     
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  6. Old Bones

    Old Bones Senior Member

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    @Gingergrrl Your post from last night (read this morning) reached me across the miles, and broke my heart. I've only been a member of PR for two months now. But, during that brief time, I have come to appreciate some of the participants better than many casual "in person" relationships I've had for years. You are one of those members.

    Your kindness shines through your helpful words, and the warm eyes of your lovely canine avatar. Despite your many challenges, you take the time to respond to others with wise and thoughtful advice.

    Rather than considering you a burden, I'm sure your family feels honoured to have you in their lives, and that you are deeply loved.

    I'm so glad to hear you have decided not to cancel your upcoming appointments. One never knows when we'll meet that next person, doctor, etc., who helps to change our life for the better. Perhaps that's just around the corner for you. In the meantime, I hope it helps to realize that many of us at PR have you in our thoughts, and are sending our very best wishes.
     
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  7. ahmo

    ahmo Senior Member

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    @Gingergrrl I'm so glad you've changed your mind. Stanford may have some answers for you. The travel won't be so pleasant, but you'll have lot's of support. Great decision to get a w/c. I happened to have this bookmarked, a really cool mini type. I'm sure you've already got or will have heaps of types to choose from. :hug:
    http://travelscoot.com/
     
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  8. xrayspex

    xrayspex Senior Member

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    Gingergrrl I am so sorry its to this point for you :( but I am really glad this story inspired you :)

    I heard this story on public radio yesterday and was inspired as well; my physical situation is not as challenging as yours gingergrrl but I tend to get really discouraged too as I hate feeling judged or doubted, I am more sensitive to that than some people and then you add on having poorly understood health complaints for many years you get a type of PTSD having to deal with a not-user-friendly environment when you are vulnerable ....it wears you down

    and this show made me feel like we have to remember what we know in our gut and like Eleanor Roosevelt said "no one can make you feel inferior without your consent"....which can be challenging even with good health sometimes

    I am really sorry for what you are going thru....and I am glad you are not throwing in the towel now....there is always someone who has an answer, or so my therapist tells me :)
     
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  9. Old Bones

    Old Bones Senior Member

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    @xrayspex Like you, I am more sensitive than many others. Are you aware of Elaine Aron's work on highly sensitive people? On her questionnaire to assess high sensitivity, I answer "true" to 20 of 22 statements, with only 12 or more being required to be considered highly sensitive.

    You are so right. Having a poorly understood or respected illness is particularly challenging for us. It took me many years to stop worrying so much about what others think of me. Unfortunately, feeling inferior is probably inevitable to at least some degree. It's hard not to in a society that values success and accomplishment. I've dreaded the inevitable question "What do you do?" for years (decades). Now, I've reached the age where people assume I'm retired, so the question has become "What did you do?" The answer is rather depressing for me, and would be for the questioner as well, if not for my usual obfuscating response. This leads to my appearing dull. Better dull, I guess, than other critical judgements, or doubt.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thanks to everyone for all your comments from last night and today and I hope more people read the article about Jill and are inspired to keep trying.

    @firefly It's true, I do have the time, but I've been sick for three years and it seems like with all my research nothing has stopped me from getting sicker. Trying to solve this illness has been harder work than my masters thesis and planning my wedding combined. I have the determination but so far, I am just going in circles and it is so hard not to want to give up when I am holding my family back from having a real life.

    Very good point and I never thought of that. I really have not begun to research the motorized wheelchairs yet b/c I just hoped that I would not need one and now it is clear that I do.

    @SickOfSickness Thank you and that makes sense and I could see the co-pay being astronomical and cheaper to just buy one through another route. That way you can also choose what works best from you vs. the insurance company going for whatever serves them best.

    @Old Bones thank you so much and that means a lot to me.

    I am keeping the appts (Dr. Chia and Stanford) b/c I want to know in the end that my family can say that I literally tried everything humanly possible to get better. I still want to believe that I will figure out why my breathing has deteriorated so much the last 2-3 years and that it will only take one doctor to figure out the missing link or a treatment that could improve my life.

    @ahmo thank you and I will definitely look at that link and bookmarked it to go back to.

    @xrayspex I don't listen to the radio and am so glad I found it on PR. I am glad you were inspired by it too.

    I want to believe that someone has the answer so I can know if I really have ME/CFS or another problem (or multiple problems!) and then figure out how to proceed.
     
    justy likes this.
  11. Firefly_

    Firefly_ Senior Member

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    @Gingergrrl i know this has to be super banging head against the wall frustrating having such a unique problem re breathing. It is a sort of comfort having other people in a drifting boat with you lol. And it's easier for us relative newbies to say keep looking/trying/fighting. Give me a couple more years (or months) and I'll be thoroughly sick of it too I'm sure.

    I'm with Old Bones in that I too appreciate you on this forum quite a bit. We need you lol.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @firefly and I only joined PR in June 2014 (and there are people who have been here since 2009- or is it 2007- I am not sure when PR started?) so I still feel like a newbie sometimes. I honestly think that it could be anyone who gives me the missing clue that could help me to solve this (from a newbie to someone who has been ill for 20 years) and I am open to any and all feedback and appreciate it all.

    I helps so much when you guys tell me to keep looking, trying and fighting and if I could get better, I would be the biggest advocate that this community has ever seen. I would fight for neuro-immune, autonomic, unexplained cardio-pulmonary, ME/CFS, MCAS, Mold/Biotoxin, Lyme, and all our diseases with everything in me. I don't actually want to give up but the guilt of how much I hold my family back sometimes takes over. I think I am back in the fight now but it gets so tedious and exhausting when I try so hard and there is no pay-off.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @ahmo I just looked at your link (and I know motorized wheelchairs and travel scooters should be it's own thread so I will keep this brief) b/c I still want this thread to be about Jill's story and want others to be inspired by it like I was.

    I just wanted to say that the scooter in your link wouldn't work for me b/c I cannot hold my arms out at that length or height due the level of my autonomic problems and weakness in my right arm due to prior injury from Levaquin. I need more of a wheelchair type unit in which my arms stay at my sides.

    I may start a new thread on this tomorrow but really appreciate the link.
     
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  14. Cheshire

    Cheshire Senior Member

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    @Gingergrrl You're not holding your family back from having a real life, your disease is.
    And what "real life" is anyway? They probably have a different life than the one they expected, it may be a non-ordinary life, but it is nonetheless a "real life". Is their life worthless now? Certainly more strange and difficult, but from what I've read from you, you still have good moments, that's what counts.
     
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  15. justy

    justy Senior Member

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    Wow, what a story! Does it give me hope? I don't know if it does - her issues were so physically obvious, while for me everything seems so non specific. But the tenacity to carry on is a good lesson.

    @Gingergrrl - I just want you to know that I really value your contributions here on PR, not just as a member, but as someone who I think of as a friend. I am so glad you are going to go ahead with your appointments and keep searching for answers and for things that will make your life more bearable. I also made a decision recently to try and improve the quality of my life as it is. I applied to social services for a needs assessment - and yesterday I go the good news that I have been assessed as having a need and will get direct payments so I can hire a PA.

    This means I will be able to have some independence! At the moment I can only leave the house once a week for a short while when my husband is not at work. The rest of the time I have to stay at home, even if I feel ok to go out as I have no one to take me. It means I can take the kids out as well this summer for trips to the beach, or even just to a local café. It means my husband wont have to take time off work for me to have routine Drs appts etc.

    I have also decided to apply for funding through charities to buy an off road wheelchair. I live in a remote, countryside location and cant go out from the front door as there are no pavements. If I get an off road chair (about £3,000), then I can go for walks with the dog with the kids and my husband in the summer evenings. At the moment I have to stay at home unless we drive a long distance to somewhere with pavements we can walk. I don't have the extra energy needed right now to apply for grants etc, so will have to wait, but its an exciting thought.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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  17. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Cheshire and it's a really good point, what is "real life" anyway? I don't believe their life is worthless now but it is certainly different than they expected it to be which brings me a lot of guilt.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @justy I think her story gave me hope b/c even though her issues may have seemed physically obvious, her doctors were not picking up on it and even Mayo Clinic was saying there was nothing that they could do. It was only through her own tenacity and not giving up that she solved it on her own and ended up helping several others in the process. And when she took her last steps and bought a motorized wheelchair, it was not a failure or defeat but a way to spend more time with her husband and child which inspired me, too.

    Thank you and I value you as a fellow PR member and friend on this journey with me, too.

    Wow, that is great news!!!!

    That is awesome as well. Good for you and all of this advocacy inspires me to keep going.
     
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  19. justy

    justy Senior Member

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    OK enough! I am going to get tearful before breakfast and we can't have that ;) can we :)
     
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  20. PatJ

    PatJ far and free I gaze

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    The world is round and the place which
    may seem like the end may also be the beginning.
    ―Ivy Baker Priest

    Thoughts of suicide can be a benefit if they act as turning point toward something better and more optimistic. Going through with it is a permanent solution to what may be a temporary problem.

    Please remember what Firefly_ has said Gingergrrl. The real burden is in your mind. Instead of assuming you know what your family thinks, you could try asking them outright: "Am I burden to you?" A loving response from them may dispell your perception about being a burden.

    Your love for them isn't a burden to them. The time you spend talking with them isn't a burden. The help you provide to your daughter with her homework or problems in life isn't a burden.

    Think of what your family would lose without your presence ― it would be more than what they would gain. Your husband would lose a loving wife and wonderful person who shares his life. Your daughter would lose an experienced guide, friend, and mother. She would have many significant moments in her own life, such as marriage, that would occur without you.

    The loss of your presence in their lives would be the real burden, especially if you chose to leave them.

    Consider what you're teaching your daughter: to persevere, not give up even when in terrible pain, to keep looking and fighting while you can. You can be an inspiration to her even with your poor health. If she meets with health problems in the future she can remember that you didn't give up, didn't just accept doctor's advice, and she can emulate your example.

    Your condition also gives your daughter the chance to better understand people with disabilities and deepen her sense of compassion for them.

    Real life is every moment. A diverse life of rampant activity isn't any more real than a bedbound life. It's what you do with the time you have that really matters. The fact that they are with you shows that they choose to spend their time with you, not that you are holding them back.

    Don't forget about alternative medical systems such Ayurvedic Medicine, and Traditional Chinese Medicine. They both have very different, but often very effective ways of treating illness. They have intelligent, experience based techniques that western medicine isn't aware of.

    Just like western medicine it may take time to find a decent practitioner, but it's worth the search just to expand your treatment options.

    A simple approach would be a post to Ayurvedic and TCM message boards to explain your symptoms. The participants could give you a basic opinion and maybe even recommend someone in your area with specific experience. I think Ayurveda would consider your breathing problems to be a "vata" condition (wind/air related), and would have some possible treatment strategies in a short time.

    Long ago I read two words that I've never forgotten: Fail forward. Every "failure" is one less item on your list of things to research or try. Knowing what doesn't work may be valuable information at some point. I've read that Mr. Dyson who invented the cyclonic vacuum went through more than 1200 prototypes. He learned from what didn't work and failed forward toward a design that works beautifully.

    Ninety-five percent of the remedies I've tried have either made me worse or done nothing. But without continued searching and trying I wouldn't have found the five-percent that have helped and improved my health.

    I just spent two days taking amisulpride and found that it made my light and sound sensitivities much worse. It was supposed to do the opposite. This is a useful lesson because now I can try to figure out why it had an opposite effect for me.

    I can learn and fail forward. You can do the same.
     
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