Reaching Milestones While Living with Myasthenia Gravis

This year I turned 30.

For most of my friends, their 30th birthday meant they could have a big party and use it as an excuse to get together. For me, it was more of a celebration of life and the fact that I am alive.

Over the past year, I have been told many times that I “shouldn’t have survived that.” Having received a diagnosis of pneumocystis pneumonia (PCP) in January of this year, and (on top of this) being unresponsive to all treatments for myasthenia gravis, I had prepared myself for the worst. I was away from home for a month, and I was on continuous oxygen. I had over 30 tablets added to my daily medication to try to fight off the infection, as well as to prevent me from catching anything else.

I developed PCP because I was taking rituximab, but I wasn’t taking the impact on my immune system seriously enough. I was part of a community outreach program, and it was here that I picked up the infection. I hate making a fuss and going to doctor’s appointments, so I probably left this a lot longer than I should have. When I finally did go, I had an arterial blood test that showed low oxygen levels, and X-rays showed something funny growing in my lungs. I was rushed to ICU and into theater. My lungs were functioning at less than 20 percent.

I was told to say goodbye to family and friends. I ensured my will was up to date, and I told my friends and family members that I loved them. At 29, this was a lot to cope with, and I felt completely overwhelmed with the finality of it all. But I was also surprisingly calm. When surgeons, specialists, and your primary healthcare practitioner come together to see you, you know it is serious. And when they admit that they were scared to put you under, reality really sets in.

My birthday month — May — arrived, and I was still here, so I knew I wanted a massive celebration. Besides the fact that I had survived, I also wanted to celebrate the special people in my life who had stood by me, encouraged me, and carried me through this terrifying part of my life. I organized a cake smash photo shoot with friends. I bought a tutu and a unicorn horn to wear. We visited our hometown. I was alive. I am alive.

Sometimes we are given these terrifying moments to remind us about what is truly important in life. My medication has made me retain water and look puffy — but is it really so important in the greater scheme of things when it is keeping me alive? Is needing to have a nap every day so terrible when it means I can enjoy the time with my husband when he gets home from work? Is it worth trying so hard to fit in with society when most people have no idea what it means to be in a constant battle with your own body?

Life has so much more meaning to me now, and I am trying to find the good in every single day. Some days I want to cry about the unfairness of my situation, but then I look back on where I have been and where I am now. Life is good. Life is worth fighting for. And I am never, ever, going to give up.

We still don’t have a treatment for my MG, but we are currently in discussions to try a stem cell transplant. However, we have been told that there is not enough clinical evidence to support this option — and with a rare disease, there may never be enough evidence. But that’s a story for another day.

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