This space is where I document the in-between moments — the appointments, the flare-ups, the lessons, the setbacks, and the quiet victories. It’s where I tell the truth about navigating two autoimmune diseases while still choosing to live, lead, and breathe fully.

Breathing on Borrowed Time

How a 7-Week Treatment Interruption Impacted My Myasthenia Gravis

Today, I want to share what happened when I was forced to go seven weeks without the medication that helps me breathe.

The Resolution I Didn’t Keep

One of my New Year’s resolutions was to be more active in this space.

I did not honor that goal.

Not intentionally — but life has been lifing.

Since my last post, I’ve been fighting with the infusion company that administers my weekly treatments. I’ve been advocating with my insurance company just to continue receiving my Rystiggo infusions.

Advocating for yourself while battling active autoimmune diseases — Myasthenia Gravis and Crohn’s Disease — while also trying to show up for work and personal obligations is not easy.

This journey is not for the weak.

But I am still here.

And today, March 1, 2026, I am recommitting — to writing, to transparency, and to telling the whole story.

Is Rystiggo Working?

In my last post, I shared that I wasn’t sure if Rystiggo was working.

I didn’t feel dramatically better — but I wasn’t worse either.

Well.

I can now say with absolute certainty:

Rystiggo works.

How do I know?

Because I was forced to go without it.

When the System Fails You

On January 1st, my insurance changed due to a company transition.

I did what any responsible patient would do — I proactively contacted Kaba Fusion, the company that administers my Rystiggo infusions. I provided my new insurance information three weeks before my next cycle was scheduled to begin.

I wanted to avoid disruption.

The day before my scheduled infusion, I realized I had not received the medication or supplies.

When I called, I was told they were missing the RX BIN number required to obtain authorization from United Healthcare.

My immediate thought:

Why didn’t someone call me sooner?
Why am I finding this out the day before treatment?

That meant I would miss my infusion.

Treatment prescribed by my neurologist.
Treatment that stabilizes my breathing.

For two weeks, I called daily.

Transferred.
Placed on hold.
Redirected.

No one could clearly explain why the issue hadn’t been addressed earlier.

Meanwhile, my body began to regress.

What Regression Feels Like

The symptoms that Rystiggo had been controlling slowly resurfaced.

Trouble breathing.
Extreme fatigue.
Inability to hold my head up for long periods.
Loss of bladder control.
Blurred vision after just a few hours on my laptop.

I was exhausted — but unable to sleep.

Every time I tried to rest, I would wake up choking, gasping, unable to breathe — even while wearing my BiPAP machine.

The suffocating feeling returned.

That feeling of your body betraying you in slow motion.

As week seven approached — four weeks of the prescribed treatment break, followed by three unplanned weeks without medication — I was told United Healthcare had denied authorization for the medication but approved the nurse visit.

I remember thinking:

I don’t need a nurse if there is no medication.

When I attempted to contact United Healthcare directly, I learned communication had to go through Quantum. Through them, I was informed that Kaba had not submitted all required documentation proving medical necessity.

Rystiggo is not optional for me.

It is the difference between functioning and suffocating.

I was in tears.

From frustration.
From fear.
From exhaustion.

I contacted Kaba again.
I contacted my neurologist.
I pushed for documentation to be resubmitted correctly.

The Breaking Point

The next day, I attempted to drive to a property for a site visit.

I was on the phone with my supervisor when the spasms began.

I stopped breathing.

My body went into fight-or-flight mode. My bladder and bowels gave out. My muscles weakened instantly.

She paused and asked quietly,
“Did you just stop breathing?”

I could barely respond. Just a faint, “mm-hmm.”

She told me to turn around and go home immediately.

I didn’t have the heart to tell her that I didn’t have a choice.

I went home. I stripped. I showered. I tried to regain control of my body.

Shortly after, I received the call.

United Healthcare had approved the medication. It was being overnighted. A nurse would arrive the next day.

Relief and anger can coexist.

I felt both.

Relief that I could breathe again soon.
Anger that it took a physical crisis to make it happen.

Where I Am Now

I am currently in week four of this infusion cycle.

Because I went seven weeks without active treatment — four weeks as prescribed and three weeks unplanned — this round feels like starting over. My body is relearning stability. My muscles are rebuilding trust.

But here’s what I know now without doubt:

Rystiggo works.

And so does self-advocacy — even when it exhausts you.

What This Has Taught Me

Living with Myasthenia Gravis and Crohn’s Disease means:

Fighting your body.
Fighting administrative systems.
Fighting insurance approvals.
Fighting fatigue.
Fighting fear.

And still showing up.

Coping isn’t just about mindset.

It’s about persistence.
It’s about documentation.
It’s about knowing your symptoms well enough to say, “This is not right.”
It’s about pushing even when you are tired of pushing.

But it’s also about grace.

Grace for missed goals.
Grace for slower days.
Grace for weeks when survival is the only accomplishment.

I am still navigating this journey.

But I am recommitting — to this space, to transparency, and to honoring the reality of living with chronic illness.

If you are fighting your own invisible battle, I see you.

We are not weak.

We are warriors learning to rest between rounds.

Thank you for spending time in my story today.

If something here resonated with you — whether you’re living with chronic illness, supporting someone who is, or simply learning — I’m grateful you’re here.

This journey is not always easy. It is not always visible. But it is real.

And so are we.

Until next time — breathe gently, advocate kindly, and give yourself grace. 💛

— Kia
The Dual Diagnosis Diaries