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#PatientsAreNotFaking
At 13, Oct & #39;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">https://twitter.com/DamnDRose...
At 13, Oct & #39;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">https://twitter.com/DamnDRose...
Mar & #39;98: Begin menstruating for 9 weeks straight. Doc orders the & #39;last& #39; 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 & #39;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& #39;t feel comfortable. The cyst I have is seen in women in 60& #39;s-80& #39;s. A 13-yo having this cyst type and size is extremely, extremely rare, he says. He& #39;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:
& #39;If the cyst isn& #39;t removed, in 3 to 6 weeks it will burst, and your daughter will die.& #39;
#PatientsAreNotFaking /6
He looks at my mother. With perhaps the typical tact some surgeons lack, he says:
& #39;If the cyst isn& #39;t removed, in 3 to 6 weeks it will burst, and your daughter will die.& #39;
#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& #39;t a timeframe guideline. It& #39;s an order.
Surgery is set for Friday, May 22, 1998.
#PatientsAreNotFaking 7/
No wiggle room. This isn& #39;t a timeframe guideline. It& #39;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& #39;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& #39;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& #39;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& #39;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& #39;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& #39;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& #39;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& #39;s all a part of my medical life story. How I WAS RIGHT and doctors were wrong, and even incompetent.
#PatientsAreNotFaking 27 /
So, that& #39;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& #39;T* always know if or when we are "faking."
NO, most people DO NOT FAKE THEIR SYMPTOMS. NO, it& #39;s NOT & #39;all in our heads.& #39;
#PatientsAreNotFaking 28 /
NO, most people DO NOT FAKE THEIR SYMPTOMS. NO, it& #39;s NOT & #39;all in our heads.& #39;
#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& #39;ve never once doubted a chronically ill individual& #39;s symptoms. Ever.
#PatientsAreNotFaking 29 /
Do some people fake symptoms? Well, yes, unfortunately. But I& #39;ve never once doubted a chronically ill individual& #39;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 & #39;enough& #39; to fake symptoms.
#PatientsAreNotFaking 30 /
BECAUSE IT MAKES YOU FEEL BETTER.
I would LOVE to be healthy & #39;enough& #39; 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& #39;t laugh at us or dismiss it. If you think a certain test won& #39;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& #39;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& #39;t "act like it" because I either know that won& #39;t get me ahead in being taking seriously - or don& #39;t want to be seen as melodramatic.
Using medical terms, being calm, and & #39;speaking like a mad student& #39; works for me.
#PatientsAreNotFaking 34 /
Using medical terms, being calm, and & #39;speaking like a mad student& #39; works for me.
#PatientsAreNotFaking 34 /
But make no mistake - I am more I& #39;ll than I look. I& #39;ve lost a huge amount of functioning and abilities.
I am very, very ill.
I DON& #39;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& #39;T fake my symptoms.
Please, for the doubters - work WITH US.
We desperately need your assistance.
#PatientsAreNotFaking 35 /
Is D Rose& #39;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 & #39;I just want attention& #39; 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 & #39;I just want attention& #39; for 16 years.
It is not funny to be treated as less than human. #PatientsAreNotFaking / 37
Treat us as if we have cancer. Don& #39;t doubt, dismiss, minimize, or scoff at our "cancer." Respect it. Respect us. Be civil, even if you think we& #39;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& #39;T lying.
Need proof? Most parents would happily give you the number of their child& #39;s surgeon -
#PatientsAreNotFaking /41
Chances are, they AREN& #39;T lying.
Need proof? Most parents would happily give you the number of their child& #39;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& #39;re not part of the solution...you are part of the problem.
#PatientsAreNotFaking 42 / END THREAD.
#PatientsAreNotFaking 42 / END THREAD.
