Next Up- 10 YEARS of Medical Test Results That Were Never Disclosed To Us

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What does it feel like to read 10 YEARS of medical records, with test results that absolutely pointed toward ME’s autoimmune disorder that could have been treated so much earlier?

More painful than any words can express since not one single one of these test results were shared with us, until recently. 

I will share all of what I have found out, and what medical professionals have explained to me, that helped me in our battle for her much needed care, one day soon. 

For now, I’d like it to sink in for my readers, that 10 years ago, in 2013, her medical team had data that was never presented to ME’s parents. 

Data that would have saved ME from the excruciating pain and suffering. Saved her from the battle for her much needed care plan. And saved our entire family from the medical trauma we all endured due to individuals who did not fully share ME’s test results. 

Data that was later supported by more data, 

which was also, never disclosed to us. 

One day, I’ll share those test results. 

But for now, I just simply want people to know the science was there. 

It begs the question… 

who could with hold this information, 

and, why? 



Next Lesson - Captive Insurance

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Have you ever heard of captive insurance? 

Do you know what captive insurance is used for? 

For most, the answer is, “Why no, I actually don’t know. Can you tell me?” 

Don’t worry, I didn’t either. 

But I learned rather quickly, and I plan to teach you everything I know about Captive Insurance. Specifically the Captive Insurance plan that most of my friends and family members have no idea that it exists, in which they are covered under. More or less. 

I will delve into that more another day. 

Today,  I’d like for my readers to witness what we witnessed as ME fought so valiantly for her life. 

Yes, Catatonia can kill you. Yes, her disorder can kill you. 

This first photo is of ME during her very first catatonic crash. In which a physician ordered a CT scan, and proceeded to release her from the hospital. Full on catatonic. 



This next photo is the many faces of ME fighting for her life, before she was put on a pain plan from Boston Children’s Hospital. The pain plan worked to help her, until it didn’t. The Boston doctors made the decision to halt any more pain med increases to make sure the underlying cause was being  treated. After IVIG was successful, they kept her on the meds to ensure that it wasn’t the meds that affected her vitals. They did not, and then she was weaned! 

This next screen shot was the before oxygen, after oxygen, that was being withheld from her care plan. Oxygen, that, thanks to her Katie Beckett team, we knew to fight to get it, to supplement her oxygen that was being deprived from her brain. That oxygen was needed as we awaited approval of IVIG, her much needed treatment plan. Treatment that would save her life, which was denied by primary insurance all the way to mid December of 2022. 
The oxygen relieved her some. But pain was at the forefront of everyday that we awaited treatment. 


Soon the supplemental oxygen that was holding off  some of her oxygen desaturations, but not all, was no longer working. 

This next photo the first hand was five minutes before her much needed IVIG treatment that her team outside of Memphis was extremely confident would work! 

The second photo was two weeks after her first IVIG treatment! 

Dr. Hoy is our hero!! 

The next three photos are of her vitals that occurred day and night. So often that the alarms going off still ring in our minds! One of the many parts of medical trauma that we’ve yet to shake. 



This next photo needs no introduction! 

This is now! 

No pain meds. No supplemental oxygen except when flying and mountain climbing!!

Our sweet hero!!! ME!!! 

Truly living her best life, while recovering from denial of care! 
Today!

Why show these now? 

Because it’s important to me that anyone that was involved in the denial of ME’s care has to look at these photos. 

May these photos forever soften their heart 
and create a change in them. 

Change that leads them to be the good! 

Change that leads them to truly serve the people. 



What To Do When Cigna Denies Your Claim

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This is a very informative article. It lays out very clearly the algorithm that Cigna uses to create cost savings initiatives for large companies.  Though, unlike this author’s experience, for us, the denial of ME’s treatment absolutely did cut off access to care. (Though, obviously, had the proper off label review process taken place, it would not have.) 

And…

Although we begged to pay out of pocket, the providers said no every time. (As I’ve shared in previous posts, we’ve been told this is to protect the consumer, and if so, that is a good thing. However, consumer protections need to go further. Which one day I will share our initiatives that we are working on concerning this.) 

In ME’s case, the denial went further than the initial denial of care discussed in this article… 

When our doctor sent in the 120 pages of documentation in the fall of 2022, for the off label process, these documents did not make their way to the specialized pharmacy for the off label process until mid December of 2022. (A Cigna employee and an Accredo employee each gave me their contact information. They said they’d gladly confirm this with anyone who would want to investigate.) 

We truly were stuck in the middle of bureaucracy. 

There was absolutely no doubt that ME was the one paying the price for that bureaucracy. 

Let’s get back to the article… 

What is the take away from this article? 

One of the first lessons I try to teach those who contact me is this…

Once you get that first denial,  begin the appeal process immediately. Do not wait. Do not be intimidated. The article states only 5% of all  claims that go through this algorithm will appeal. 

95% are likely,  much like I was, afraid to appeal. 

Thankfully, Dr. Hoy led that process, because,  as he said to us, he needed to do what was right for his patient. 

This low percentage of appeals is likely due to employees not realizing that they can and should appeal. This, along  with lack of education and  of transparency by benefit plan administrators and HR, and you have a recipe for disaster for many who pay into the health benefit plan. 

Fear of retribution from appealing is definitely a factor  for many as well. 

You get the gist. 

Hopefully this article helps my readers grow in that confidence. 

Make sure your doctor/provider is following through on the appeal process,. 

Many providers don’t want to or do not actually even do an appeal,  because that added layer is so expensive and labor intensive for their practice.  

Which, is incredibly ironic and hypocritical, since corporations are using the algorithm to deny claims due to the fact that a physician actually reviewing it would be too expensive. (File this under “things that make you smack your head”). 

However, they think nothing of the medical provider actually having to pay employees, along with the physician’s time and money spent in the appeal process. Again, as I’ve stated in other posts, this is a system set up to pit a physician against their patient. 

Next, absolutely call the Department of Labor for guidance on your rights within your plan. 

This article is everything that was said to me by a local physician who was trying to help us throughout ME’s denials and care. 

This provider shared with me that these physicians who do these mass denials for Cigna and other companies make $200 or more per denial. 

Read the article I’ve attached here, and then do the math. 

This physician shared this with me about two years ago. I don’t even think I fully understood what he was teaching me until it got to the off label process and the 120 page document was with held. 

I’ve told anyone that will listen about the lesson  this physician imparted on me. Many who believed what he said to me went on to get their much needed care approved after following the steps I learned along the way to desperately seeking care for ME. 

Thankfully, this article gives me hope that now others are speaking out. 

This is long overdue. 

Read this article, and by all means share this post.

Perhaps one day these companies will be held accountable for what so many of us have experienced. 




The Gift That Keeps On Giving

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Our battle for ME’s treatment was grueling, 

painful, 

heartbreaking 

and more. 

Nothing.will.ever.change.that.

I’ve written often about the fear and pure exhaustion it put us through. 

Having said all of that…

There is nothing that feels better 

than teaching employees of other Fortune 500 companies, what I learned from ME’s denial of care. 

This opportunity to help others brings some amount of meaning and value to the pain and suffering that my husband’s Fortune 500 Company put our entire family through. 

One family at a time, we are dismantling systemic abuse of power by Self Funded Benefit Plans offered by Fortune 500 Companies! 

And this does my heart so good! 

If you know someone who is struggling getting care, what ever that denial of care is, please feel free to have them contact me. I will gladly take the time needed to help them teach their company’s HR senior lead team how to execute their plan under good faith. 




What Is A Consortium? Part 1

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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? 



Will You Finally Be Quiet Now?

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People likely ask themselves, "Why does Diane continue to advocate for ME even after ME has finally gotten the care she has needed all these years?" 

"When will she finally just move on, be happy with the outcome, and live for today?"

I think this is a valid question, and I would love to address that here.

It is this simple, 

we have so much work to do to right this wrong. 

So many still do not understand how truly heinous this was. 

So much ignorance is still a part of our Disability Rights History. 

In fact, I actually had one individual say to me, after I shared with her that ME finally qualified for Katie Becket, 

"Will you finally be quiet now?"

Yes, this was said to me, in my kitchen no less, by someone I have known for years. 

Someone who has not walked a day in my shoes.

Someone who is not a mother of a child with disabilities. 

A person who has not experienced what it feels like to be a mother who could not get the care her child so desperately needed in the state of Tennessee. 

In shock, I did not reply, I simply turned away, and left the conversation this individual was having with my husband concerning work issues. 

But I put it away in my heart, and remembered to carefully check my audience I was speaking to going forward.

That individual's one ignorant statement was a reminder to me how far we have to go to teach others. 

That even those in our lives who watch us teach daily, may simply not be an advocate for my child and her rights. 

The same rights this individual currently enjoys without thinking about them.

Should I be silent after we are finally getting what ME finally needs, 16 years almost too late? 

Absolutely not. 

The egregious actions by both the state of TN, by withholding Katie Beckett for almost 40 years after all other of the 50 states passed Katie Beckett in some form or fashion, *

and after MANY years of our primary insurance and the Memphis medical community denying care to ME that was SO very needed, **

warrants me 

to never 

ever 

ever 

"be quiet."



*The state of TN withheld the Katie Beckett program, also known as TEFRA, that has been in existence since 1982. This was not only cruel to many Tennessean families who needed it so desperately all these years, it also opened the gateway to abuse by self funded insurance companies. You see, in many states, the only oversight for Self Funded companies is the accountability to the Katie Beckett, TEFRA, programs. 

**Years and years of advocating for Katie Beckett in TN with anyone that would listen to me, years of being denied much needed care by the medical community and our primary insurance, and a VERY long, exhausting, traumatizing process to finally qualify for Katie Beckett TN. 



What It Takes to Process Medical Trauma

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Watching our sweet ME slowly recover from this horrific debilitating disease, that was taking her life, and causing her to live in pain that is indescribable, has been both exhausting and sorrowful at times, when it should have been just all joy. 


Living in fight or flight mode for so long (literally years) had done an absolute number on all of our central nervous systems, and this year has been spent healing all of us who were traumatized. 


This includes every member of our entire family. 


Not one of us escaped the trauma of this horrific event. 


Our therapists and physicians have walked us through our signs and symptoms of PTSD, and how to handle them. 


My therapist has supported my need to write about all we saw and felt. 


My therapists and physicians have supported me in my asking that those who know what they did to our sweet ME, to please hold whoever withheld the care, (including a 120 page document that was the key to that care) accountable. 


Writing helps me share our pain we endured, with them. 


It helps me know that they know what these decisions put our whole family through. 


I’ve attempted to do this with grace and clarity. I want my voice to be a voice of change. While I ask for accountability and an overhaul of a broken system. 


The notes I’ve written to them could on their own make a book. A book that would truly break your heart as you watch me beg for accountability and an apology to my husband.


Those notes were the only way I could communicate with those who hurt us. 


I repeatedly told them there is no amount of money that could give us back the years that were taken from us, the hours I begged for care for sweet ME, and the daily gruel of living with a monitoring system going off as her numbers continued to plummet. Watching her in 10+++ pain scale while access to care was cut off by the system. Crying myself to sleep as I lived in fear that this would continue until her last breath. All hope lost. 


Hope that many doctors were sure would come, if only we could get through this incredibly horrific process of the systemic abuse of denial of care. 


Processing medical trauma, as you watch your child literally come back to life, (just as our amazing Dr. Hoy felt so sure would happen.) is a roller coaster of emotions. 


Seeing my husband be betrayed by individuals he considered family was truly the most heartbreaking thing I have ever witnessed in my 34 year marriage. 


Watching him when he’d arrive home each day, after having to walk through the doors of a building that now represented hurt and fear, was heartbreaking. 


A place where people made decisions that harmed his little girl. 


Harmed his whole family. 


A place where he continued to work hard, hold his head high, and do his best for the company he loves. 


A place where the individuals who were involved waved at him from across the room, smiling as if absolutely nothing had happened, without ever once acknowledging the pain, fear, and suffering they had put him through. Let alone asking how our sweet ME was doing. 


Begging for those who know what they did, to please admit what they knew, was my only way to stand with my husband this year. 


My hope was that my begging, would one day help them see the pain they caused him, and their hearts would be softened enough to apologize to him. 


This act of goodwill would begin his journey to forgive those who hurt him by harming his family.  


I truly believed they would. 


I truly believed in these people I had known my whole adult life. 


I trusted that they had the hearts I remember them having when we were all young adults, coming up together, in a journey that bonded all of our families. 


I believed with all my heart, that accountability and an apology to John would come, if they were made aware of what this denial had caused to ME and our whole family. 


I trusted them. 


That apology never came. 


Even though I begged over and over for the person/persons who withheld the 120 page document to please be honest, take responsibility, and please apologize to my husband. 


Nothing… ever… was said… to offer him healing and the opportunity to heal from this trauma. 


Maybe one day they will. 


But for now, as my therapist has said, with such incredible wisdom, do something today that is self care for you. Get outside  and maybe blog a little were two of many pieces of wisdom she gave to me yesterday. 


I did both. And more. And really focused on her words all day long. 


So here is my blog post today, a day after walking  my husband through his grief of recognizing that people you once admired can indeed hurt you and still never say they are sorry. 


Hurt people, hurt people. 


Which is why we believe therapy is so important. 


I do not believe in hurting those who hurt you. It only hurts you more. Forgiveness heals you. 


We choose to forgive. 


So I will focus on my healing,  on continuing to help other caregivers who are in the battle for their child’s life, while supporting my family through love and the best support I can give them, for their healing. 


All while I forgive those who did this to our sweet ME, (as I process these last many years of watching her suffer), while still asking anyone that will listen, for accountability for their systemic failures that took years of our life, caused an incredible amount of suffering, and quite literally nearly took our sweet ME’s life. 


Forgiving them as I process the pain, while holding them accountable for their actions, and creating change, are not mutually exclusive. All can occur at one time. And should. 

PS PTSD and C PTSD are incredibly misunderstood. Please take a moment to educate yourself on what PTSD is really like. 



“I Don’t Know How to Read a Monitor”

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During ME’s last hospitalization the ER doctor ordered telemetry. I had never heard of this before, and my daughter, a nurse,  had to teach me how to say it properly. 

I learned quickly what it was, and why it was important for ME to be hooked up to it. 

The morning after she was admitted into the hospital, the doctor on rounds came in. 

She said, “Well, everything looks great.” 

I replied, “Except her oxygen.” 

She said, “No, her oxygen has been fine all night.” 

I then said, “How could you know that?” 

The doctor replied with a bit of a tone, “Mrs. Grover, she was hooked up to telemetry. I read the reports before I came to her room.” 

I said, “How did you do that?”  And i pointed out to her that ME had never been hooked up to telemetry the whole time she was there. 

Then I shared that I had asked the nurse on duty to hook up the hospital monitor, since telemetry had never been put in place, so I could compare our monitor that was remotely monitored 24/7, by the state of TN, to the hospital monitor.

The doctor became increasingly agitated. 

I stepped out of the room so she could treat her patient. 

I was informed by the nurse that she stepped out right after me. 

Later that day, ME’s neurologist came to see ME. ME’s oxygen had been increasingly hanging out  in the 80’s. When I saw her neurologist, who had already once saved ME’s life, I asked her why ME was not being prescribed oxygen. 

I pointed to her monitor, and the hospital monitor. 

She stated that she didn’t have a way to read the monitor. 

I said, “Dr. M***, it’s right in front of you. You don’t know how to read that?” 

She looked at me through sad eyes. A “nurse” was behind her, tapping aggressively on her lap top. 

Dr. M*** then very quietly said , “No, I can’t read that.” 

Mind you, this is one of the most brilliant neurologists in the nation. 

I then said, “Dr. M***, there is a number 8 and a number 3. That makes the number 83. If your daughter’s oxygen was 83% would you want her to have oxygen?” 

She put her head down, and said, “Yes. Yes, I would.” and proceeded to leave the room. 

But not before I asked the person typing away on the computer for her name and phone number. 

And thankfully I took photos and video of both monitors and the lack of telemetry. 



The top photo is the monitor that was remotely monitored 24/7 by ME’s Katie Beckett Respitory team and the state of TN. 

The bottom monitor is our local Children’s Hospital monitor. 

If you look closely at the time stamps, you will see they are taken seconds apart. 

Indeed, the local hospital monitor showed an 8 and a 3. 

Numbers ME’s neurologist told me she could not read, while her “nurse” tapped on a computer aggressively as if to say to Dr. M***, “I’m watching you.”

We were discharged soon after that. 

Without oxygen. 

Shaken to the core, both my husband and I were coming to the realization that we could no longer go to this hospital for care for ME. 

We reported the incident. 

The case is still open. 

After this, I watched the records in ME’s patient portal. I saw reports that were simply not true. 

Slowly, accurate reports were being added to the portal. 

Along with results they never told us about. 

Results such as blood gas test results that we, finally, saw a few months ago, that showed high TCO2 and low PO2.  These results were following her Nov 11, 2019 catatonic crash, done on Feb of 2020. This is indicative of lack of oxygen. 

Along with MRI results, that again, they never told us about, that they did in 2020. These results confirmed what they found in 2019, (again results they never disclosed) of brain hemorrhages. Yes, you read that correctly. Again, information we were never given. 

I know our incredible doctor knows how to read a monitor, and where she can get that information. 

In my heart of hearts. I believe she wanted me to report her. Maybe  now she is able to tell what she knows under oath. And her work will be protected. 

She often said to us, “I swore to do no harm.” 

We would say to each other, “Well isn’t this harming ME?”

And then one day it hit us. Under incentive pay, doctors often lose their jobs if they don’t hit the financial mark. Had her company held this over her head for the studies she was working on? 

We don’t know, but hopefully one day we will. 

But the one thing I do know is this, ME’s neurologist absolutely knows how and where to read a monitor. And that was all I needed to report the good doctor for denying ME oxygen. I hope she’s able to share her truth. 

Note: In our complete shock, the witness with me recalls Dr M*** saying she didn’t know where to read a monitor. I recall her saying she didn’t know how to read a monitor. Either way,  I followed up with what I said above. She left without prescribing ME the much needed oxygen. Oxygen deprivation that she had years before run tests to confirm, as proven by the blood gas test results, the MRI, and the CT of the brain, immediately after ME’s first catatonic crash. 

It begs the question,  “Why?”