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#PatientsAreNotFaking
At 13, Oct '97: Abdo pain constipation begins. Doc says I just lack fibre. Given various stool treatments until March. He continues to dismiss my insistence something is very wrong. 1/ https://twitter.com/DamnDRoseTweets/status/1196804341753139200
At 13, Oct '97: Abdo pain constipation begins. Doc says I just lack fibre. Given various stool treatments until March. He continues to dismiss my insistence something is very wrong. 1/ https://twitter.com/DamnDRoseTweets/status/1196804341753139200
Mar '98: Begin menstruating for 9 weeks straight. Doc orders the 'last' of numerous ultrasounds, x-rays, blood, urine tests.
May: Shadow seen on pelvic ultrasound, referred for CAT scan. #PatientsAreNotFaking 2/
May: Shadow seen on pelvic ultrasound, referred for CAT scan. #PatientsAreNotFaking 2/
Mid-May '98: CAT scan shows a LARGE, 3 and a half pounds, 8-inch diameter, grandular cyst encasing the left ovary.
Family doc had said for months, I lacked fibre, all I needed was to eat more fruits and veggies b/c I was simply constipated. #PatientsAreNotFaking 3/
Family doc had said for months, I lacked fibre, all I needed was to eat more fruits and veggies b/c I was simply constipated. #PatientsAreNotFaking 3/
Referred back to make gynecologist.
Fri, May 8, 1998: Mother & I wait from 8am - 3:30pm for gyno to find a minute between his surgeries to talk to us about the next steps. At 3:30pm, he walks up to us. #PatientsAreNotFaking 4/
Fri, May 8, 1998: Mother & I wait from 8am - 3:30pm for gyno to find a minute between his surgeries to talk to us about the next steps. At 3:30pm, he walks up to us. #PatientsAreNotFaking 4/
Cyst is life-threatening, he says. He could remove it, but doesn't feel comfortable. The cyst I have is seen in women in 60's-80's. A 13-yo having this cyst type and size is extremely, extremely rare, he says. He'll refer me to Toronto, ON. #PatientsAreNotFaking /5
Go home, he tells us. Wait by the phone. He will call us with details TONIGHT.
He looks at my mother. With perhaps the typical tact some surgeons lack, he says:
'If the cyst isn't removed, in 3 to 6 weeks it will burst, and your daughter will die.'
#PatientsAreNotFaking /6
He looks at my mother. With perhaps the typical tact some surgeons lack, he says:
'If the cyst isn't removed, in 3 to 6 weeks it will burst, and your daughter will die.'
#PatientsAreNotFaking /6
5:30pm: He calls. I have to be in Toronto, ON, at Toronto General Hospital, at 6AM on Monday.
No wiggle room. This isn't a timeframe guideline. It's an order.
Surgery is set for Friday, May 22, 1998.
#PatientsAreNotFaking 7/
No wiggle room. This isn't a timeframe guideline. It's an order.
Surgery is set for Friday, May 22, 1998.
#PatientsAreNotFaking 7/
Dad calls airport. @AirCanada at the time (1998 )wanted $3k for him and I to fly down. They refuse to give him a medical voucher, though he makes clear I am considered to be approaching death with every day the cyst is in me. AirCanada refuses. #PatientsAreNotFaking 8/
My father has no problem driving for long stretches on highways. We'll drive, he decides. From Thunder Bay, ON to Sault Ste. Marie, then to Toronto. He notifies work and my school.
We leave Saturday, 5am.
#PatientsAreNotFaking 9/
We leave Saturday, 5am.
#PatientsAreNotFaking 9/
This next bit is *really* important. Thunder Bay is a rural city, surrounded by forest, rocks, and water. In 3 directions, it takes 8-16 hours to drive to another city. Duluth, MN is about 6 hours away.
#PatientsAreNotFaking 10/
#PatientsAreNotFaking 10/
Once you leave Thunder Bay, other than small villages and towns you can blink and be through in a minute, there is miles and miles of only nature - and you - until Sault Ste. Marie. Then, between SS Marie and Toronto - more nature. #PatientsAreNotFaking 11/
Driving Ontario's Highway 17 is a beautiful, but isolated and lonely, stretch. Various corners and stretches are dangerous. #PatientsAreNotFaking 12/
You have a rockface on one side, and in areas, a guardrail between you and a cliff to Lake Superior. I cannot stress the words "isolation" and "middle of nowhere" enough. #PatientsAreNotFaking 13/
And so my father drives, 8 or so hours to SS Marie, spend the night at my godparents, then drive another 8 to Toronto. We stay with my dad's friends from University in the Lytton Park area. Get as close to the hospital as you can, the gyno said. #PatientsAreNotFaking 14/
We meet the surgeon, Dr. Stephane Laframboise, a Gynaecologic Oncology physician who knows my type of cyst. She knows the cancer she must look for inside my body.
#PatientsAreNotFaking 15/
#PatientsAreNotFaking 15/
"How was your flight?"
My dad pauses.
She spins around in her chair to face us. "DON'T tell me you drove here," she says.
"Okay... "
"YOU DROVE!?" she nearly shrieked the words. 16/
My dad pauses.
She spins around in her chair to face us. "DON'T tell me you drove here," she says.
"Okay... "
"YOU DROVE!?" she nearly shrieked the words. 16/
Turns out, I was in such serious condition I should never have been put in a car. Ever.
The cyst was attached to my body by a thread of tissue, Dr. Laframboise said.
Had we driven over a big enough bump, pothole, or had an accident, #PatientsAreNotFaking 17/
The cyst was attached to my body by a thread of tissue, Dr. Laframboise said.
Had we driven over a big enough bump, pothole, or had an accident, #PatientsAreNotFaking 17/
the tissue would have detached from the abdominal wall, the cyst would have burst, and I would have died a very painful death within 20 minutes. There were no cell phones in 1998 like they are now. #PatientsAreNotFaking 18/
My father would have had no way to call or signal for help. No small fire or ambulance house nearby to go to. We were told I would have definitely died, alone, in the van, with my father. He would not have been able to do anything. #PatientsAreNotFaking 19/
Neither fam doc or gyno had informed us, in any way, that I could not be transported by vehicle. Dr. Laframboise said had she known my dad had intended to drive, she would have set the hospital's Learjet to fly me to Toronto General Hospital. #PatientsAreNotFaking 20 /
When my mother wanted to fly down two days before surgery, @AirCanada gave *her* the medical voucher.
After two weeks of tests and prep, my 3 and a half pound, ovarian cyst was removed, along with the ovary. It could not be saved. #PatientsAreNotFaking 21 /
After two weeks of tests and prep, my 3 and a half pound, ovarian cyst was removed, along with the ovary. It could not be saved. #PatientsAreNotFaking 21 /
I spent 5 days in hospital. Thankfully, the cyst was benign (not cancerous).
I was flown back home via Air Canada (we paid).
Eventually, my father received around $200 from the airline to use towards another flight.
#PatientsAreNotFaking 22 /
I was flown back home via Air Canada (we paid).
Eventually, my father received around $200 from the airline to use towards another flight.
#PatientsAreNotFaking 22 /
In hospital I was told after a few months, my menstrual cycle would return to normal. It never would.
My childhood family doctor and gynecologist nearly killed me by either not listening or keeping my family and I medically informed. #PatientsAreNotFaking 23 /
My childhood family doctor and gynecologist nearly killed me by either not listening or keeping my family and I medically informed. #PatientsAreNotFaking 23 /
I am alive today because, for some reason, the tissue anchoring the cyst didn't twist off - and due to the knowledge, compassion, and capability of Dr. Laframboise, Susan Winton, MSW, and both their teams.
#PatientsAreNotFaking 24 /
#PatientsAreNotFaking 24 /
And the amazing #nurses. *Never* forget a wonderful #nurse. The cyst I had was apparently so rare for my age that, I, as a patient, am said to be in textbooks as a case!
Unfortunately, my periods never regulated.
#PatientsAreNotFaking 25 /
Unfortunately, my periods never regulated.
#PatientsAreNotFaking 25 /
Through no fault of Dr. Laframboise, I would continue to menstruate heavily for the next 17 years. And experience dozens of #MedicallyUnexplainedSymptoms until April 29, 2014, when finally "allowed" to have
#PatientsAreNotFaking 26 /
#PatientsAreNotFaking 26 /
a #salpingooophorectomy with #hysterectomy a few months before age 30.
So, that's all a part of my medical life story. How I WAS RIGHT and doctors were wrong, and even incompetent.
#PatientsAreNotFaking 27 /
So, that's all a part of my medical life story. How I WAS RIGHT and doctors were wrong, and even incompetent.
#PatientsAreNotFaking 27 /
And so, #nurses, #doctors, #physicians... NO, you *DON'T* always know if or when we are "faking."
NO, most people DO NOT FAKE THEIR SYMPTOMS. NO, it's NOT 'all in our heads.'
#PatientsAreNotFaking 28 /
NO, most people DO NOT FAKE THEIR SYMPTOMS. NO, it's NOT 'all in our heads.'
#PatientsAreNotFaking 28 /
I have NEVER known a chronically ill person to fake their symptoms, for any reason.
Do some people fake symptoms? Well, yes, unfortunately. But I've never once doubted a chronically ill individual's symptoms. Ever.
#PatientsAreNotFaking 29 /
Do some people fake symptoms? Well, yes, unfortunately. But I've never once doubted a chronically ill individual's symptoms. Ever.
#PatientsAreNotFaking 29 /
Actually, I argue that, if I chose to, I would have more reason to deny, downplay, or avoid discussing my symptoms.
BECAUSE IT MAKES YOU FEEL BETTER.
I would LOVE to be healthy 'enough' to fake symptoms.
#PatientsAreNotFaking 30 /
BECAUSE IT MAKES YOU FEEL BETTER.
I would LOVE to be healthy 'enough' to fake symptoms.
#PatientsAreNotFaking 30 /
What a #privilege I would consider faking or exaggerating symptoms or conditions to be!
PLEASE - #LISTEN to us. Take us seriously. Pain is subjective, so what you think qualifies as "not bad enough" to warrant pain MAY VERY WELL BE WRONG.
#PatientsAreNotFaking 31 /
PLEASE - #LISTEN to us. Take us seriously. Pain is subjective, so what you think qualifies as "not bad enough" to warrant pain MAY VERY WELL BE WRONG.
#PatientsAreNotFaking 31 /
If we ask for a specific test, consider it. Don't laugh at us or dismiss it. If you think a certain test won't assist us, respectfully explain why.
If we tell you what we have, what we think it may be, what we want to rule out - BELIEVE US.
#PatientsAreNotFaking 32 /
If we tell you what we have, what we think it may be, what we want to rule out - BELIEVE US.
#PatientsAreNotFaking 32 /
I'm in pain all the time. So, yes, I CAN be a 5 or 8 it pain and "not look it." YES, your voice causes excruciating pain. YES, I am *that* dizzy. *THAT* exhausted.
The pain is excruciating.
#PatientsAreNotFaking 33 /
The pain is excruciating.
#PatientsAreNotFaking 33 /
I don't "act like it" because I either know that won't get me ahead in being taking seriously - or don't want to be seen as melodramatic.
Using medical terms, being calm, and 'speaking like a mad student' works for me.
#PatientsAreNotFaking 34 /
Using medical terms, being calm, and 'speaking like a mad student' works for me.
#PatientsAreNotFaking 34 /
But make no mistake - I am more I'll than I look. I've lost a huge amount of functioning and abilities.
I am very, very ill.
I DON'T fake my symptoms.
Please, for the doubters - work WITH US.
We desperately need your assistance.
#PatientsAreNotFaking 35 /
I am very, very ill.
I DON'T fake my symptoms.
Please, for the doubters - work WITH US.
We desperately need your assistance.
#PatientsAreNotFaking 35 /
Is D Rose's video meant to be light-hearted? Yes. Is her dancing kind of funny? Yes, it can be seen as such.
Yet, to assume you, as a nurse or doctor, know when OUR symptoms - OUR lives - are fake - is what we encounter just too often.
#PatientsAreNotFaking 36 /
Yet, to assume you, as a nurse or doctor, know when OUR symptoms - OUR lives - are fake - is what we encounter just too often.
#PatientsAreNotFaking 36 /
I understand the video is meant to be comedic.
But there is nothing funny about being dismissed or being told 'I just want attention' for 16 years.
It is not funny to be treated as less than human. #PatientsAreNotFaking / 37
But there is nothing funny about being dismissed or being told 'I just want attention' for 16 years.
It is not funny to be treated as less than human. #PatientsAreNotFaking / 37
Treat us as if we have cancer. Don't doubt, dismiss, minimize, or scoff at our "cancer." Respect it. Respect us. Be civil, even if you think we're wrong.
Treat us like you would like to be treated. Be open and kind.
#PatientsAreNotFaking 38 /
Treat us like you would like to be treated. Be open and kind.
#PatientsAreNotFaking 38 /
If you, as a nurse, doctor, paramedic, med student, resident, or technician are burnt out or suffering, get help. Take that leap.
We need you. I will work with you if you work with me - together, in respect.
#PatientsAreNotFaking / 39
We need you. I will work with you if you work with me - together, in respect.
#PatientsAreNotFaking / 39
And, @AirCanada, the reason I tagged you in a few of these thread posts, even thought your refusal to give me a medical voucher nearly cost me my life 20 years ago, is to reiterate:
#PatientsAreNotFaking 40 /
#PatientsAreNotFaking 40 /
If you get a call saying about needing emergency seats for medical reasons, if a child will die without surgery, LISTEN TO THEM.
Chances are, they AREN'T lying.
Need proof? Most parents would happily give you the number of their child's surgeon -
#PatientsAreNotFaking /41
Chances are, they AREN'T lying.
Need proof? Most parents would happily give you the number of their child's surgeon -
#PatientsAreNotFaking /41
Call the darn hospital. Go above, go beyond. What happened to me was 20 years ago, but @AirCanada, it still happens today. If you're not part of the solution...you are part of the problem.
#PatientsAreNotFaking 42 / END THREAD.
#PatientsAreNotFaking 42 / END THREAD.
