What a Seven-Week Treatment Interruption Revealed About My Myasthenia Gravis
There are moments in life with chronic illness when you wonder whether a treatment is truly helping.
Maybe the improvement is subtle.
Maybe you still have symptoms.
Maybe you do not feel significantly better—but you are not getting worse either.
Then something interrupts that treatment, and your body answers the question for you.
At the beginning of 2026, my Rystiggo schedule consisted of one treatment each week for six weeks, followed by a prescribed four-week break before beginning the next cycle.
But that four-week break became seven weeks.
The first four weeks were planned. The additional three were not.
They were not medically recommended.
They were not my choice.
They were caused by an administrative breakdown.
During those three additional weeks, I learned exactly how much the treatment had been helping me.
🗓️ The Resolution I Couldn’t Keep
One of my New Year’s resolutions was to become more active in this space.
I did not keep that promise—not intentionally, but because life had been doing what life occasionally does.
Lifing.
While I wanted to write, I was fighting with the infusion company responsible for administering my Rystiggo treatments. I was communicating with my insurance company, contacting my neurologist, and trying to secure continued access to a treatment my body depended on.
At the same time, I was managing Myasthenia Gravis, Crohn’s Disease, work responsibilities, and personal obligations.
Apparently, autoimmune diseases do not pause while you complete insurance paperwork.
Advocating for yourself while actively experiencing symptoms is exhausting. The same body that needs you to make calls, document conversations, follow up, and keep pushing is also begging you to stop and rest.
I may not have honored my original writing goal exactly as planned, but I survived the interruption.
Eventually, I returned to this space to tell the truth about what happened.
💉 Was Rystiggo Actually Working?
During my earlier treatment cycles, I was not sure how much Rystiggo was helping.
I did not feel dramatically better, but I was not becoming noticeably worse.
Was my breathing improving? Maybe.
Was I still exhausted? Yes.
Did my neck still become too weak to support my head sometimes? Absolutely.
It was difficult to measure progress when improvement did not arrive with a flashing sign announcing:
Congratulations! Your treatment is working!
Unfortunately, autoimmune treatments are rarely that courteous.
After being forced to go without Rystiggo longer than prescribed, I could finally answer the question.
Rystiggo was helping me.
I knew because the symptoms it had been controlling began to return.
📋 When the System Fails the Patient
On January 1, 2026, my insurance changed because of a company transition.
I tried to be proactive.
Three weeks before my next six-week treatment cycle was scheduled to begin, I contacted KabaFusion, the company administering my Rystiggo treatments, and provided my new insurance information.
I wanted to prevent an interruption.
The day before my scheduled treatment, I realized I had not received the medication or necessary supplies.
When I called, I was told the company was missing the prescription identification information needed to request authorization from UnitedHealthcare.
My immediate thought was:
Why didn’t anyone contact me sooner?
Why was I discovering the problem the day before treatment?
Why had three weeks passed without anyone identifying—or at least communicating—the missing information?
The issue was not simply inconvenient. It meant I would miss a treatment prescribed by my neurologist to help manage a disease that affects my ability to breathe.
For the next two weeks, I called daily.
I was transferred.
Placed on hold.
Redirected.
Told to contact someone else.
I spent hours trying to locate the person who could solve the problem while my body slowly began to regress.
🫁 What Regression Felt Like
As the interruption continued, symptoms that had become more controlled began resurfacing.
Difficulty breathing.
Extreme fatigue.
Neck weakness that made it difficult to hold up my head.
Blurred vision after spending only a few hours working on my laptop.
Loss of bladder control.
Exhaustion so severe that my entire body begged for rest—while breathing problems prevented me from sleeping.
When I tried to rest, I would awaken choking and gasping, even while using my iVAPS machine.
The suffocating sensation returned.
So did the fear.
It felt as though I were watching my body betray me in slow motion.
As I approached seven weeks without another dose—three weeks beyond my prescribed break—I was told that UnitedHealthcare had denied authorization for the medication but approved the nursing visit.
I remember thinking:
A nurse cannot administer medication that no one has approved.
When I tried to contact UnitedHealthcare directly, I learned that communication had to go through Quantum Health. Through Quantum, I was told that KabaFusion had not submitted all the documentation required to establish medical necessity.
Meanwhile, I was the person struggling to breathe.
From my perspective, Rystiggo was not optional.
It was helping me function.
It was helping control symptoms affecting my ability to breathe.
And while different companies debated paperwork, my body carried the consequences.
I cried from frustration, fear, and exhaustion.
Then I started making calls again.
I contacted KabaFusion.
I contacted my neurologist.
I pushed for the missing documentation to be corrected and resubmitted.
Because apparently, being sick was not enough. I also needed to become the unpaid project manager of my own medical authorization.
⚠️ The Breaking Point
The following day, I attempted to drive to a property for a site visit.
I was speaking with my supervisor when the breathing spasms began, and I temporarily could not breathe.
My body immediately entered fight-or-flight mode. My muscles weakened, and I lost control of my bladder and bowels.
My supervisor became quiet before asking:
“Did you just stop breathing?”
I could barely respond.
All I could manage was a faint:
“Mm-hmm.”
She told me to turn around and go home immediately.
The truth was that I did not have much of a choice.
I returned home, removed my clothes, showered, and tried to regain some sense of control over my body.
Then the call finally came.
The medication had been approved.
It would be sent overnight, and a nurse would arrive the following day.
Relief and anger can exist in the same body.
I felt both.
Relief that treatment was finally coming.
Anger that the situation had been allowed to deteriorate that far.
Anger that it took weeks of calls, tears, worsening symptoms, and a frightening physical episode before the system finally moved.
💜 Returning to Treatment
Restarting treatment did not immediately erase what those additional weeks had done to my body.
It felt as though I were beginning again.
My body needed time to regain stability. My muscles needed time to respond. I needed time to recover physically and emotionally from what had happened.
But the experience gave me an answer I had not been able to find while treatment was continuing normally:
Rystiggo was helping me.
Treatment success does not always look like the complete disappearance of symptoms.
Sometimes it looks like stability.
Sometimes it looks like slowing the decline.
Sometimes it looks like being able to work, speak, hold up your head, or breathe with less difficulty.
And sometimes you do not recognize that stability until it is taken away.
📣 Self-Advocacy Should Not Be This Hard
Self-advocacy is essential, but we should also be honest about its cost.
It requires persistence.
Documentation.
Phone calls.
Names, dates, reference numbers, and follow-ups.
It requires understanding your symptoms well enough to recognize when something is wrong—and having enough energy left to convince someone else that it matters.
Patients should not have to physically deteriorate before receiving attention.
We should not have to become experts in insurance procedures while actively struggling to function.
We should not have to prove repeatedly that prescribed treatment is medically necessary while our bodies absorb the consequences of every delay.
I am grateful that my medication was eventually approved.
But gratitude for the resolution does not erase the harm caused by the delay.
🌿 What the Interruption Taught Me
This experience reinforced the importance of knowing my body.
I knew my symptoms were returning.
I knew my breathing was worsening.
I knew the delay was affecting more than my treatment calendar.
I continued pushing even when I was exhausted from pushing.
But this experience also reminded me that persistence must exist alongside grace.
Grace for missed goals.
Grace for slower days.
Grace when making one more phone call feels impossible.
Grace for the weeks when survival is the accomplishment.
I did not fail because I temporarily stopped writing.
I was busy fighting to breathe.
That deserved my attention.
🎵 Music Playing…
“Keep Breathing” — Ingrid Michaelson
Because there are moments when the next phone call, the next appointment, or the next breath is the only thing you can manage.
Sometimes you do not need to conquer the entire battle.
Sometimes you simply need to keep breathing long enough to reach the next moment.
💭 Reflection Corner
This experience taught me that treatment stability can be easy to underestimate—until that stability is interrupted.
It also taught me that self-advocacy is not always empowering in the moment. Sometimes it is frightening, frustrating, and deeply exhausting.
But my voice still mattered.
My symptoms still mattered.
My life still mattered.
A treatment delay is not merely paperwork when a patient’s ability to function—or breathe—is attached to the outcome.
If you have experienced a treatment delay, insurance denial, or interruption in care, what helped you continue advocating when you were already exhausted?
If you support someone living with chronic illness, remember that administrative battles can be almost as draining as the illness itself. Helping with a phone call, taking notes, or simply believing what they are experiencing can make an enormous difference.
🚨 A Note About MG and Breathing
Myasthenia Gravis can weaken the muscles involved in breathing and swallowing. Severe or rapidly worsening breathing difficulty, difficulty swallowing, an inability to manage saliva or secretions, or trouble speaking may indicate a medical emergency.
If you or someone you know with MG experiences these symptoms, seek immediate emergency medical assistance. This entry shares my personal experience and is not a substitute for individualized medical advice.
Thank you for spending time with my story today. Whether you are living with chronic illness, supporting someone who is, or simply learning, I am grateful you are here.
Until the next diary entry, remember: you are never alone on this journey. 💜
With honesty, hope, and a little humor,
Kia Lorice
Founder • Author • Advocate • Future Wellness Coach
The Dual Diagnosis Diaries
thedualdiagnosisdiaries.com
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