I was diagnosed with Myasthenia Gravis at the age of fourteen.
When the doctor first told me I had MG, I didn’t really take it seriously. I thought to myself “at least it’s not cancer or a brain tumor”. When I got discharged from the hospital, I didn’t take take my mestinon like I should of; I only took it when I felt like I needed it.
A year after my diagnosis, I became seriously ill. I got sick with pneumonia and that’s when my MG became more serious for me. It was also my first encounter with intubation.
That was my wake up call.
That’s when I knew I had to take care of myself, when I started taking all of my medications as directed. I’m now twenty-four, and in the ten years since my diagnosis, I’ve been intubated thirteen times, and been hospitalized many, many more.
I now have a healthy respect for the seriousness of MG.
I’ve gotten my thymus removed, experienced plasma exchange and IVIG (which caused aseptic meningitis), and most recently, I’ve started chemotherapy. Chemo has helped keep me out of the hospital for almost a year now. Several years ago, I had a port catheter placed so I could get plasma exchange. It wasn’t until last year when I began chemotherapy and went through four doses, that my catheter somehow became infected.
That infection almost cost me my life.
I wish I could say that was the only time my life has been endangered with MG.
My journey with this illness it has thought me not to loose faith or take anything for granted.
Even though everyday is a battle just to make it through the day, it has taught me to appreciate everything. Before I got diagnosed with MG, I took for granted everything I did, like showering, changing my clothes, eating, walking around my neighborhood and talking. And now, I cherish every single thing I can do on my own. Even though at time’s it’s not much, it is a victory. I thank God for waking me up the day’s that I have and even more when I wake up with energy wanting to do something. I may appear normal and my behavior may look “lazy” or fake to some but inside, my body is literally fighting itself and it takes everything I have to fight back.
I have a serious illness and it’s called Myasthenia Gravis and I will beat it!!
One thought on “I Didn’t Take Myasthenia Gravis Seriously”
Been thru it All, diagnosed At 15y/0′ and now 50. Thymectomy, over 15 meds, ivig, chemo, plasmapheresis. On vent over 30 x. Don’t know how I am still alive. Was in hospital 136 days last year. And admitted over 86 x in last 5 years. On vent over 50 x in my life. My trailer is in foreclosure, no car, $740 in Ssi. so guess I’m on the way to homelessness. My mom has Lupus ( auto immune) and has been stable . I feel so alone, mis understood. So happy to find others on this social media. I want to start a support group in South FL. But need help. Im trying to sell my mobile home b 4 I m kicked out.. this stress is making mg worse..