This next blog post comes up filed under "you really should not have to know this in your whole lifetime, but now you do, so you probably should teach others" category.
Over the next few posts I am going to attempt to teach about consortiums or associations, also known as MEWA's in the self funded benefit plan insurance industry.
Before I delve into that, I want to flash back to what we now know were some of ME's first symptoms of her autoimmune disorder. Symptoms that would one day be described by doctors on the 10+++ scale of pain, and would cause pain and suffering for years upon years, while we begged for answers.
In 2013, ME's blood platelets dropped at an alarming rate.
We woke up in the morning on a Sunday, and John went to get ME ready for church.
He carried her out to us in a panic.
She was draped in his arms, with petechia all over her face, hands and body.
The days leading up to this, we had taken her to the doctor because she was no longer bearing weight on her legs. She was in so much pain throughout all of her joints.
I kept asking the doctors to please help us. Help us understand why this vibrant little girl can no longer walk or run.
As John approached us with ME in his arms, I remember running to our phone to call her doctor.
My mama heart knew this was serious, and that we were face to face with something that I truly never ever wanted to face my whole life.
I called our pediatrician's office. His colleague was on call, and said to meet us at the clinic immediately.
So we did.
He took one look at her and said, "Get her in your car, and drive her directly to Lebonheur. It will be faster than an ambulance."
We drove ME directly to Lebonheur.
A St. Jude physician was brought in due to concerns about leukemia.
Leukemia was ruled out, but the concern was still very high.
The next day her platelets began to rise.
ME's pediatrician said basically not to worry, this was just a fluke.
A fluke?
I pressed further.
Were they sure? How could they be sure? Could he do periodic repeat tests to be sure?
(I later found out this is exactly what should have happened when something like this occurs. Which would have led to them knowing that she needed the treatment she is now getting. Which was absolutely available at that time.)
Instead, the answer to my questions were a very strong definitive no, this was just a fluke.
Years later, during our search for answers for ME's heart rate dropping, and her oxygen dropping, a physician at Lebonheur looked back on her records.
As MaryEllen sat next to me, weak from her system being deprived of oxygen and basically dying a slow painful death, the doctor looked at me matter of factly and said, "Get to Boston, get her on a pain plan. She is at a 10+++ pain scale."
Then she added, "Her blood platelets dropping in 2013 were her first symptom of an autoimmune disorder. She should have been treated then."
My mama heart sunk to my stomach. My gut was right. My mama gut was absolutely right.
Seven years of living in pain with a disorder that was slowly killing her. I now had a doctor piecing that part of the puzzle together for me, but she also passed us along instead of treating her.
I walked away from that appointment ready to go to Boston to share with them what that doctor said to us.
The data backed it up.
It would be years before anyone would truly explain it to me.
Having this understanding, now, what was avoided by so many for so long, literally makes my heart hurt.
I have all of her records printed. The entire story is there. Besides the low platelet count, she had another test that indicated tissue damage. We now know that was her antibodies attacking her brain. Thankfully doctors are now sharing with me so I can understand what exactly happened to our sweet ME. Their information lines up exactly with her health records.
My sweet ME, lost in bureaucratic red tape.
To learn later that science already told them this, was incredibly heartbreaking. A word I will use over and over again to describe what no other word can be used to describe this journey.
The thought of ME living in pain, due to what is now looking like cost savings initiatives is truly the most heart breaking thing I could have ever imagined happening to this sweet, kind, happy little girl.
And me, a mom, begging for help.
My words landing every single time into the deep abyss.
Literally begging doctors to hear me when I would say, "Please help us! Something is wrong."
While they had the data all along.
Each doctor passing her along, as if she was a hot potato in the game of life.
Silence.
The silence was deafening in the Memphis Medical community.
Who was silencing them?
