Blog

Myasthenic Crisis

Crisis

On May 1 I had my first ambulance ride. I certainly believe in making it a *real* May Day. Fortunately, the fine crew of Fairfax County EMS did a wonderful job in keeping a terrifying situation calm and getting me to the hard working folks at INOVA Mount Vernon ER before I slipped all the way into the great beyond. I was in myasthenic crisis.

Living with Myasthenia Gravis - Crisis Emergency

A Somewhat Rare Disease

I have Myasthenia Gravis, and it was catching up with me quickly. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and obeying the P’s and Q’s of living with the disease.

I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk, couldn’t move, but very thankfully, had just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.”

Help on the Way

The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and possibly stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital.

My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenic crisis as best as I can. She has since forgiven the traumatic event.

During MG crisis, patients can (and possibly often?) remain lucid. I heard everything that went on. Whether the eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying I would’ve been with no vision.

A Crucial Question

I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. MG symptoms also worsen with stress. I took this golden opportunity to ask my caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stat notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.

At the ER my neurological strength was barely 2/5. That means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below, and definitately not involving Freddie Kruger, but still.

I still had to pee! When it came time to take my MG medicine from home,  we said “it helps with nerve / muscle communication.” My nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!”

How I became a Gourmet Vampire

The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies. I had started IVIG a month before, making me a sort of gourmet vampire. I only take choice parts of the blood.

In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion), and found someone reciting Greg Allman lyrics can be a great comfort. I was aware of someone coding in another bay, and thanked my blessings to still be alive. At some point during the morning I was transferred to my doctor’s hospital to continue the treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.

Progress

That was the most terribly spectacular day of my history with MG. The other most spectacular day was in late July, when I took my first purely recreational walk in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze.

There were other scares too and so much to learn about the condition. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your diagnosis. It’s complicated.

Follow along and subscribe. Don’t let news of posts get buried in social media. As health allows, I will write more about my experience and try to raise a little awareness for fellow sufferers and their loved ones. If this resonates with you, I welcome comments.

 

Forced Restart

I'm still here. An Introduction.

By way of introduction, let me say a bit about myself. My name is Susan. Susan Hicks, to be exact. Whereas my name is not that unique, it seems my life has been.

First off, I’m an artist. This in and of itself speaks for the need of original creation and expression of unique abilities and points of view. Secondly, I am a sufferer of Myasthenia Gravis – a not so widely known neurological autoimmune disease / disorder, which current medical articles always brag “was named Myasthenia Gravis because it was usually fatal in the past, but isn’t usually, in the present, with success of modern medicine.”

 

Dreaming the Muse by artist Susan Phillips Hicks
Dreaming the Muse

The Usual was Almost Unusual.

Sounds good, huh? Well, on May 1, 2018, if I hadn’t awakened in the middle of the night, only because of needing to go to the loo, I’d have likely slipped into the great beyond, being already a tad too close to being there already. The disease is not what has defined me, but in away, this forced restart has. This is my re-introduction to life.

Susan Phillips Hicks - Artist Melasdesign
Yup. It's me. No. It's not a selfie.

As my nerves and muscles allow me, I will create and post art. This is what defines me anew, every time I put color to surface, every time I shape new objects. This is what I am. This is what quite a few people have scoffed at or denied any credence to throughout my life. Art is slipping away from us; from societal elitists who bar art and music from public education, or sanctions that make art museums unapproachable for the high price of entry, to anyone who treats creativity as a dangerous thing or only accepts creativity for the purpose of business or institution. It is free thought, after all. I only started making headway once I developed a rather spiteful streak in just not listening to these controlling haters, and I am all the better for it.

And so it begins.

After sputtering starts at blog writing over the past few years, with new found strength and resolution, I will build on the humble success I’ve recently found as an artist, while also dealing with the trials and tribulations I’ve had in getting here. And I’ll also write of the joys and triumphs I’ve had. I’ll showcase where I’m at, and where I hope to go in the future. I will explain more about Myasthenia Gravis, because there are plenty of other sufferers who probably get tired of having people have no idea at all about their disease, *especially* when sufferers can appear so normal. I will cautiously illustrate what’s gotten me through, while also touching upon the drawbacks and pitfalls of the modern US health system. 

I invite you to follow along and comment. We’ll see how this life develops.