Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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In memory of my aunt

Discussion in 'In Memory of ...' started by Forebearance, Oct 12, 2015.

  1. Forebearance

    Forebearance Senior Member

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    I would like to write a post in memory of a beloved aunt of mine.
    She died recently. She had undiagnosed, untreated ME/CFS for the last 30 years of her life.

    Everyone in my family noticed that she started feeling lousy in her mid 40s. But she had a couple obvious health things going on. She was overweight and needed a hip replacement.

    When she finally had the hip replacement surgery, she didn't seem to be doing better in terms of energy and general health. Several years after that she developed a slow growing kind of cancer. So then all her health issues were blamed on that.

    She had to have three surgeries to remove tumors. After each surgery they slowly grew back. But six months after the third surgery, she started to feel really bad.

    Her doctors at the University of Michigan Medical Center thought that something else was wrong besides her cancer. They put her through six months of medical tests for everything under the sun.

    I thought it really looked like she had the symptoms of severe ME/CFS. But I didn't want to intrude.
    Finally after six months, when her doctors couldn't figure out what was wrong with her, I decided to call her up and give her my opinion.

    She told me she had just figured it out herself -- from watching an episode of the Dr. Oz show where he talked about SEID. It was such a relief to me to know that she had figured it out. She said she thought she'd had it since her mid-40s.

    So of course I told her about good ME/CFS specialists near her, and suggested some pretty safe supplements she could try right away.

    But before she could get started on treating her ME/CFS, her cancer came back and made it all moot. She died of cancer, according to her doctors.

    Rats. I hate that she suffered for so long with a mild to moderate case of ME/CFS and I didn't know about it.

    I hate it that there is apparently not a SINGLE doctor in the whole University of Michigan Medical Center that knows enough about ME/CFS to diagnose it.

    Thank you for listening.
    Forebearance
     
    Rrrr, MeSci, maryb and 18 others like this.
  2. Snookum96

    Snookum96 Senior Member

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    I'm so sorry for your loss.

    It is so horrible how doctors know nothing about it, and if they do, they don't seem to care or want to diagnose it.

    Sending you hugs...
     
    maryb, snowathlete and Forebearance like this.
  3. bel canto

    bel canto Senior Member

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    That was a gift you gave her - recognition and validation that she had been sick for many years with an untreated and unrecognized illness. I would imagine that would have been a real comfort. I'm sorry for your loss and send hugs and best wishes.
     
    Rrrr, MeSci, maryb and 6 others like this.
  4. Gingergrrl

    Gingergrrl Senior Member

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    Fore, I am so sorry for your loss and there are so few doctors anywhere who know about ME/CFS or MCAS or mold illnesses or any of the more obscure things that we suffer with.

    I worked for a major hospital that I won't name for 12 yrs before I got ill and no one there would have a clue re: ME/CFS either. Not one clue.

    It sounds like you were a great comfort to your aunt towards the end and validated her suffering even when the docs couldn't figure it out. Thanks for sharing this with us and may her memory be a blessing to you.
     
    maryb, Forebearance and Jennifer J like this.
  5. Sushi

    Sushi Senior Member Albuquerque

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    Yes, Forbearance the gift of recognition is huge though she didn't live long enough to get treatment your validation must have meant so very much to her. I am so sorry that she suffered for so long, endured so much medical prodding without recognition from her doctors.

    :hug:s for you and your family's loss.
    Here is an irony. Many years ago my grandfather was the administrative head of that medical center. His daughter (my mother) also developed ME/CFS. My grandfather facilitated the very best care for her there (i.e. the medical wringer), though none of her doctors recognized the ME/CFS either. She also died of cancer.
     
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  6. daisybell

    daisybell Senior Member

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  7. Ema

    Ema Senior Member

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    I am sorry for your loss too...
     
    Forebearance likes this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    But she might not have succumbed to the cancer had she not had ME/CFS. I think "complications of ME/CFS" would be more accurate.
     
    Forebearance likes this.
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    Condolences and commiserations for your loss, Forebearance. I've been following what you're doing for about the last seven years and even if she didn't know it, I think she would've been proud of you for what you have been doing to try to help others.
     
    Last edited: Oct 13, 2015
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  10. Forebearance

    Forebearance Senior Member

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    Thank you so much for the compassion and condolences, you all. I really appreciate you.

    Yes, my aunt always believed that my ME/CFS was a real illness, and she always supported me in whatever I did to try to treat it. She even stopped by to visit me while I was out camping in my early mold avoidance years. So thank you for saying that, @Roy S.

    I agree, @Little Bluestem , that we will never know what role her CFS played in her death. If she hadn't had CFS she might not have gotten cancer. Or she might have lived much longer with it.

    Wow, @Sushi, that is a terrible irony. I'm sorry your mother had to have this illness.
    22 years ago the U of M hospital system did have a doctor who knew how to dignose ME/CFS, even though he was in the department of psychiatry. His name was Mark Demitrack. He was able to diagnose me (after making me take a written screening test for depression -- ha ha!).

    Love,
    Forebearance
     
  11. L'engle

    L'engle moogle

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    Sorry for your loss. I'm glad you were able to comfort and believe in each other, if nothing else.
     
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  12. Forebearance

    Forebearance Senior Member

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    @Sushi, may I ask how your mother eventually was diagnosed?
    Or didn't she ever get diagnosed?
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    I don't want to go too much off topic here, but as you asked....the Univ of Michigan Medical Center did treat her--with shock treatments! :aghhh:(she wasn't depressed) She was never formally diagnosed. Once they found cancer, they had their diagnosis.
     
    Forebearance likes this.
  14. Forebearance

    Forebearance Senior Member

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    Oh my gosh, Sushi, that is horrible!
    Those would be bad enough to go through if you actually needed them. Shudder.
    Your poor mom! I'm so sorry she had to go through so much suffering.

    Conventional medicine has really failed a lot of us.
     
  15. MaulikShah

    MaulikShah

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    I am sorry for your loss.
     
    Last edited by a moderator: Nov 21, 2015
    Forebearance likes this.
  16. perrier

    perrier Senior Member

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    I am very sorry for your loss. It's a universe gone. I'm sorry about Sushi's Mother too. Somehow these lives need to be more commemorated. Their suffering was great, too great to be in vain. May the earth they lie in be a feather pillow for them.
     
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