Dear Diary,
This week, I finally made it back to the ENT for a follow-up after my July emergency room visit.
And yes, I said July.
It took nearly two months to be seen. Part of the delay was because my ENT was away for a couple of weeks, but two months is still a long time to wait when your body has already demonstrated that it enjoys introducing new problems without notice.
🏥 The ER Visit That Started It
On July 21, I went to the emergency room with severe pain and swelling along the left side of my jaw. I had difficulty opening my mouth, and an urgent care visit had already documented a fever.
My bloodwork showed an elevated white blood cell count, and a CT scan confirmed left parotitis—inflammation and infection of the parotid salivary gland. Thankfully, there was no abscess or salivary stone.
I received IV antibiotics in the ER and was discharged with two oral antibiotics, instructions to use warm compresses, and a recommendation to suck on sour candy to help stimulate saliva.
Yes, my official medical treatment included candy.
Even my salivary gland understands that sometimes we need a little treat to get through the chaos.
👄 “Since You’re Here, Let Me Check Your Vocal Cords”
At my follow-up appointment, the ENT examined my salivary glands and said the episode was probably a one-time occurrence. However, if it happens again, he will investigate whether it could somehow be connected to my myasthenia gravis.
Fair enough.
Then he asked if he could check my vocal cords while I was there.
I agreed because, at this point, allowing doctors to send cameras into places cameras were never meant to go has somehow become a routine part of my life.
And lo and behold—we found another issue.
There is now a tag or growth on my right vocal cord that was not present during my previous examination.
Because apparently my vocal cords saw the rest of my body receiving attention and decided they needed their own storyline.
The ENT did not appear overly concerned. He prescribed pantoprazole and Flovent for the next 60 days, with the expectation that the medications would help clear it up.
Cool.
We found the problem.
The doctor created a treatment plan.
The prescriptions were sent to Walgreens.
That should have been the end of the story.
But then my health insurance entered the chat.
💊 The Insurance Company Practicing Medicine Without Seeing Me
Before I could even make it home, Walgreens sent me a message saying my insurance company would not cover the Flovent.
Before I had a chance to contact my ENT, he messaged me to say he had already been alerted. He contacted the insurance company and attempted to obtain approval, but they refused.
So, he prescribed a different medication.
The insurance company denied that one too.
After more back-and-forth, we finally found an inhaler the insurance company was willing to cover: Qvar.
I wish I could say that solved the problem.
Instead, I learned that Qvar would cost me $70 out of pocket. When combined with the pantoprazole, the two medications totaled approximately $100.
Like many people across the country right now, I live paycheck to paycheck. An unexpected $100 medication expense was not part of my budget.
Every dollar in my paycheck already had somewhere to go. Now, I had to figure out where an additional $100 was supposed to come from because my vocal cord decided to grow something new and my insurance company rejected the medication my doctor originally prescribed.
The medications were technically “covered,” but whether I could comfortably afford to pick them up was an entirely different question.
Let me make sure I understand this correctly.
A specialist examined my vocal cords, personally saw the new growth, determined which medications could treat it, and submitted the prescriptions. Yet somewhere inside an insurance company, someone who has never met me, examined me, heard my voice, reviewed my vocal cords in real time, or lived one day inside this body decided which medication I was permitted to receive.
Then, after we finally found one they approved, I was still left trying to fit another $100 into a paycheck that already had a destination for every dollar.
How does that make sense?
My doctor created the treatment plan, but my insurance company decided which version of that plan I could access—and my bank account determined whether I could access it at all.
😴 Then They Came for My BiPAP Supplies
As if the prescription situation were not enough, the healthcare system decided this story needed another chapter.
I received a call from the company that provides my BiPAP machine and replacement supplies. I was told that the insurance claims had been applied toward my deductible, leaving me responsible for a balance of $1,070.
Until that balance is paid, I cannot receive my next supply order.
Just a reminder: I experience episodes in which I stop breathing during sleep.
My BiPAP machine is not a luxury item. It is not a fancy nighttime accessory. I have severe obstructive sleep apnea with central apneas, nocturnal hypoxemia, and hypoventilation. I require noninvasive ventilation with supplemental oxygen while I sleep.
The machine is medically necessary, and I cannot use it safely and effectively without regularly replacing its supplies.
Yet here I am being told that I cannot receive my next supply order until I pay an unexpected $1,070 balance.
I contacted both the insurance company and the medical equipment provider to determine why the claims were not paid and what appeal options were available. Before paying a balance that large, I needed a complete explanation of what was billed, how the claims were processed, and why I was being held responsible.
The insurance company told me the balance was due to my deductible not being met.
Now, that makes absolutely no sense to me.
My deductible is $4,000. A single Rystiggo treatment is billed at approximately $12,000 when the medication and the nurse coming to my home to administer it are included.
I understand that insurance companies calculate deductibles using their negotiated or allowed amounts rather than the total amount billed. However, considering the number and cost of the treatments I have received since January, I still do not understand how my $4,000 deductible could remain unmet.
I need a claim-by-claim breakdown and copies of the applicable Explanations of Benefits showing exactly how much was applied to my deductible and how the remaining balance was calculated.
So, I filed an appeal.
Do I believe they will correct it?
Honestly, I am not optimistic.
But while the insurance company reviews my appeal, I still cannot receive my replacement supplies unless the disputed $1,070 balance is paid.
In the meantime, I still have to sleep—and I still need the equipment that keeps me safe while doing it.
Apparently, even breathing while unconscious requires insurance approval, an appeal, and a payment plan.
🫁 Unfortunately, We Have Been Here Before
This is not my first experience with this insurance company interfering with a doctor’s treatment plan.
Before I was diagnosed with myasthenia gravis, the pulmonologist believed asthma might be causing my breathing problems. He prescribed an inhaler containing 200 puffs based on how frequently I needed to use it.
The insurance company refused to cover it because it contained 200 puffs instead of 90.
Never mind that I was only allowed one inhaler every 60 days.
Never mind that 90 puffs would not have lasted even 30 days when used as prescribed.
Never mind that we were trying to treat a woman who repeatedly said she could not breathe.
Apparently, breathing must fit within the approved quantity limits.
My lungs did not receive a copy of the insurance company’s policy, but somehow they were expected to comply with it.
💉 Then Came Rystiggo
When my neurologist prescribed Rystiggo to treat my MuSK-positive myasthenia gravis, the insurance company initially tried to deny that too.
My doctor had to request special authorization and justify why I needed the treatment.
Even after approval, the insurance coverage was not enough to make the medication financially accessible, so I had to obtain financial assistance from the drug manufacturer.
Rystiggo is not an optional wellness treatment. It is not something I requested because it sounded interesting in a commercial. It treats a rare autoimmune neuromuscular disease that can affect my speech, swallowing, movement, and ability to breathe.
Yet before I could receive it, someone had to prove that keeping my muscles functioning was medically necessary.
💜 “Covered” Does Not Mean Accessible
I understand that insurance companies have formularies, coverage rules, preferred medications, prior-authorization requirements, quantity limits, deductibles, and equipment-replacement schedules.
What I do not understand is how those rules repeatedly seem to carry more weight than the medical judgment of the physicians who examine and treat us.
Even when insurance finally agrees to cover something, “covered” does not necessarily mean affordable—or accessible.
This week alone, I was faced with approximately $100 for two new medications and a disputed $1,070 balance for the supplies I need to safely use my BiPAP machine.
That is nearly $1,200 in unexpected healthcare expenses, and none of the care connected to those expenses is optional.
Patients are already managing symptoms, appointments, tests, treatments, side effects, pharmacies, referrals, medical equipment, and the emotional toll of being sick. We should not also have to become full-time negotiators simply to access the care our doctors have prescribed.
This is how people fall through the cracks.
This is how treatment gets delayed.
This is how patients are forced to choose between medication, food, housing, utilities, and other necessities.
This is how manageable medical problems become emergencies.
And this is why the healthcare system often feels less like a system designed to provide care and more like a business designed to determine how much care it can avoid paying for.
Doctors should not have to repeatedly plead for permission to treat their patients.
Patients should not have to prove, over and over again, that they deserve access to medication, treatment, or the equipment helping them breathe.
An insurance company should not have the power to quietly override a treatment plan without ever examining the person whose health is hanging in the balance.
Because while they are reviewing codes, quantities, formularies, and costs, we are the ones living—and budgeting—with the consequences of their decisions.
🎵 Music Playing…
“Price Tag” — Jessie J
Because healthcare has placed a price tag on nearly everything—including whether we can receive the treatment, medication, and medical supplies our doctors say we need.
💭 Reflection Corner
Being chronically ill has taught me that getting diagnosed is only one part of the battle. The next battle is gaining access to the care that is supposed to help you live with that diagnosis.
A prescription does not help if the patient cannot afford to pick it up.
A BiPAP machine cannot fully protect someone who cannot obtain the supplies needed to use it safely.
An approved treatment does not feel accessible when the cost still requires outside financial assistance.
And healthcare is not truly healthcare when business policies repeatedly stand between patients and their physicians.
The healthcare system may insist that it is working as designed. That may be exactly the problem.
💬 Your Turn
Have you ever had an insurance company deny a medication, treatment, medical device, supply order, test, or procedure that your doctor believed was medically necessary?
Have you ever been told something was “covered,” only to discover that your out-of-pocket cost still made it unaffordable?
How much time, money, energy, and frustration did it take to fight for the care you needed?
Share your experience in the comments. These stories matter because patients should not have to fight these battles quietly—or alone.
💜 Until next time, remember: your diagnosis may explain part of your story, but it will never define all of who you are. Keep advocating, keep asking questions, and never be afraid to use your voice—even when the system makes you fight to be heard.
With honesty, humor, and a little bit of purple,
Founder • Author • Advocate • Future Wellness Coach – Kia Lorice
The Dual Diagnosis Diaries
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