Speak Up and Stay Alive: Discussion on Undiagnosed Patients

A look at the upcoming medical documentary – UNDIAGNOSED: Medical Refugees with Dr. Katia Moritz – Creator & Co-Director.

There is a hidden epidemic – millions of people living with perplexing illnesses that elude definition and treatment. Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system.

The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

http://www.undiagnosedfilm.com

http://www.speakupandstayalive.com

Reference: Speak Up and Stay Alive. (2014, February 25). Speak Up and Stay Alive Patient Safety RadiOh! with Dr. Katia Moritz. Retrieved from https://www.youtube.com/watch?v=QwZon8YVepc

I can’t take this anymore and I’m almost pretty sure I’ve been here before…

I’m tired of having to prove

df99b5ee2e8e89241dc64712e5f54cfe

HOW SICK I AM…

It seems like a never-ending battle at this point. Although I have multiple diagnoses currently, I am continually asked to provide the evidence that I am, in fact, actually sick. It’s becoming exhausting.

First it was with the doctor’s, claiming my symptoms to be all in my head.

Then it was with Short Term Disability, where I was denied initially and told that “I am not actually sick”. They then approved me, of course, with more “evidence” – AKA spending my free time in hospitals, going from doctor to doctor, to find even a clue to the cause of my mysterious symptoms.

Next, SSDI wanted me to not only prove that I was sick, but sick enough – according to their standards – to be disabled. Months and hundreds upon hundreds of pages of medical records, I am told I am NOT disabled because “despite my substantial limitations and exceptionally large medical record,  somewhere out there is a flexible job in which I can lift a single piece of paper for an hour or so a day” (Their words, not mine).

After this, I finally got to meet with a surgeon who could supposedly help me. He said that while he does see the vascular compressions and they COULD POSSIBLY be the cause of all my symptoms, a CT scan and CT Angiography are not enough proof that I am actually sick – because it could be coincidence, after all. He told me to either come back with more proof or keep searching for another answer.

The vascular surgeon I saw before him also told me the same thing. Meanwhile, my current vascular surgeon is “worried treating me will make everything worse” – like it could potentially get better on its own? I’ve been having symptoms over 20 years, so that’s highly doubtful.

I’m in the process of converting my Short Term Disability into Long Term Disability – another way in which I get prove how sick I am once again.

I told my therapist that it’s like literally living through the definition of insanity – repeating the same things over and over again, expecting a different result.

download

  • We’re repeating tests at this point, getting no new answers.
  • No treatment either, just nonstop appointments and medical tests.
  • Where do I “keep searching”?

So far, I’ve seen: 

Multiple Primary Care doctors

Multiple Gastroenterologists

Multiple Cardiologists

Multiple Vascular Surgeons

Multiple Psychiatrist/Psychologists/Social Workers

Multiple Urgent Care Clinics/Hospitals

Multiple Gynecologists

Multiple Dermatologists

Multiple Chiropractors

Neurologist

Immunologist

Rheumatologist

Urologist

GI Surgeon

A Psychic Medium

When does this madness end?

Does it ever end? Will I ever get a break? 

wpid-1060644b71b95d63a94567111990e767.jpg

When is it finally time to give up?

tumblr_mnqp3xhqt31sorxijo1_500

In the meantime, I am getting worse – and more systems are becoming affected. Not to mention that two young girls that belonged to one of my online support groups passed away last weekend (both of which were diagnosed as having one of the “controversial” vascular compression syndromes that may or may not be causing my symptoms). One of their stories, sadly, hit a little too close to home.

Her name was Alyssa Landrith and she was only 18 years old. She fought the medical system for many years, told it was all in her head and that she suffered from anorexia. Even after her SMA Syndrome diagnosis, she still had to fight for treatment. As a result, she left this world far too soon – unnecessarily. Not surprisingly, her mother’s announcement was heartbreaking to all of us in the SMA support group. However, the blow is even harder because Alyssa represents a small part of each one of us that are fighting this illness.

Her story is my story – and other people’s stories. 


Pictures from the SMAS support group and Alyssa’s Go Fund Me Page:

6824389_1447202348.4143

12072556_10206707603061362_6180477699088150680_n

“This beautiful girl lost her life to starvation Friday evening November 6, 2015.  She was eighteen years old.  She had Superior Mesenteric Artery Syndrome and Gastroparesis, both rare digestive conditions that my daughter also is battling. Her name is Alyssa Landrith.  Her mom is Lori Landrith.

This picture was taken before the illness set in. She has slowly starved to death. She continued to get sicker, while medical institutions diagnosed her with psychological conditions (which were secondary to the digestive conditions).”

Retrieved from  Alyssa’s Go Fund Me Page


Many years ago, when I got down to 87lbs, this could have been me!

Somehow, I learned to compensate – perhaps not in the healthiest way, but it has kept me alive.

Still, the reality of living like this my whole life,

with no treatment or intervention,

is both terrifying and heartbreaking.

How do I make the doctors understand?

How do I PROVE to them that this is real?

That all the vascular compression syndromes are real?

wpid-smas.jpg

wpid-gross-structure-of-kidney-and-ureter-34-728.jpg


may_thurner_syndrome_awareness_mts-405124

f5eb8acfcbaa852ffbefdd25fb6a59b4

There’s got to be a better way. 

There’s has to be a reason to keep searching.

Maybe someday I’ll find hope once again.


“I can’t take this anymore
And I’m almost pretty sure
I’ve been here before
I can’t take this any longer
I won’t heal until I’m stronger
Strong enough to not be afraid
Of what anybody thinks
Of what anybody says
About the way
About the way I am
So I’ll wait until the day
When those feelings fade away
Then I’ll make my break

Everybody and everything I’ve known
Never taught me how to stand up on my own
Had to learn it from the one who let me go
Now I walk alone
Yeah I walk alone, yeah
I walk alone
I walk alone
I walk alone
I walk alone
I walk, oh yeah”

(Oleander – I Walk Alone)