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In memory of my aunt

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
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
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
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

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...
 

bel canto

Senior Member
Messages
246
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.
 

Gingergrrl

Senior Member
Messages
16,171
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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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.
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.
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.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
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.
 
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Forebearance

Senior Member
Messages
568
Location
Great Plains, US
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
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Sushi, may I ask how your mother eventually was diagnosed?
Or didn't she ever get diagnosed?
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.
 

perrier

Senior Member
Messages
1,254
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.