Am I Glad I Got MG? Maybe...

I had a life. I was healthy, the kids had grown up and moved on, and I had just retired and really didn’t know what to do for the final chapter of my life. Vacation? Binge on movies TV shows I had always savored to watch? Learn to cook and garden? Finally I'll have time to visit the kids and grand-kids? I was happily looking forward to retirement. Maybe finally take that Alaskan cruise!

And then, boom, myasthenia gravis (MG) changed everything. A complete unknown grabbed me emotionally and physically and upended the script of my life’s final chapter. What I thought I had earned (a happy retirement) was mercilessly stolen and I was apparently doomed to a misery-filled ending. Instead of living, I was resigned to constantly trying to reduce suffering and the possibly of dying early. Right?

Well, that’s not what has happened!

Let me explain.

It’s true that the onset of my MG 5 years ago profoundly changed my life, just like it has for most MGers.

Initially, like I imagine happens with most newly diagnosed MGers, I felt like a deer caught in the headlights. I had only ocular MG symptoms and sources told me that it might or might not evolve into more complex symptoms, but the eventual type and severity could not be predicted. So, I didn’t know what to do or what to expect over time. I was feeling anguish and grief about unknown hurdles I would have to learn to tolerate or overcome.

Eventually, by the second year the MG morphed into periodic months-long flare-ups of slurring, inability to swallow and facial muscle weakness.

At one point (about three years ago), I landed in the hospital for failure-to-thrive because of MG (I couldn’t swallow food or my MG meds (Prednisone and Mestinon). It was a frightening experience because few hospital staff knew anything about treating MG. I had learned very little about MG, and realized that, going forward, it would be necessary to advocate for myself, which meant learning everything I could about this rare condition.

After the hospital stay, I swore to myself to never end up hospitalized for MG again, if I could help it. With each subsequent flare-up I became frightened and anxious. Then gradually, over many months, I learned about the tricks and hacks used by other MGers (thank goodness for virtual support group forums!) and found useful articles on MG websites. I was finally able to gain some control over flare-up symptoms and some confidence in treating myself.

Doing research and finding support groups

Besides support groups, I found tons of MG information scattered online about treatments, research, medications, financial help, neuromuscular neurologists, seminars, health fairs and, most important, I found other MGers who wanted to share and help. I never knew I could learn and understand so much about one disease.

I joined my local support group and wanted to share with them what I had learned about MG and also nutrition. So, I created my website (something I never knew I could do!) for the group filled with connections to all the useful content I had discovered and used. I continue to add content to the website and improve it daily as a new life routine. What an enjoyable and fulfilling new chapter in my life! Visit my site here.

I have made friends with other MGers both locally and online (Zoom Friends!) and their understanding, advice and friendship have added much value to my life.

It turns out that the most important thing I learned in my MG research was how to eat properly. I studied nutrition and ended up completely transforming my daily diet into nothing but wholesome, fresh, and nutritious food, the opposite of the junk-and-processed-food diet I was on during all the previous decades of my life.

I feel so much better and healthier now and I am still in awe of the difference the diet has made. My MG symptoms and pain, and my meds’ side effects, are much more tolerable. I feel energetic every day. Feeling physically better has dramatically reduced my life-long clinical anxiety and also the recent anxiety and depression associated with managing a difficult and incurable autoimmune disorder.

Who knew all that could happen?!

Last year I discovered that I had writing skills! I had left a Guest Post on myasthenia-gravis.com and the Editorial Team was impressed enough to offer me a (paid!) position as Contributor. The article you’re reading now is my sixth one with no end in sight. And I’m thoroughly enjoying the writing experience (and hopefully inspiring others?).

So, everything positive that’s happened to me since the onset of my MG five years ago I can attribute to the MG itself. I now eat properly, learned to create useful websites, learned the physiology of MG and the immune system, and am aware of all the available MG treatments and clinical trials. I learned how to write compelling and helpful articles; and I made new friends.

Am I living a life of misery-filled doom and gloom? Definitely not. Am I glad I got MG? Well, as each day goes by, I’m increasingly likely to say YES!