As part of MG Awareness Month, I wanted to share some personal stories written by individuals with MG.
I plan to include several of these personal pieces throughout the month of June, because all of us with MG are affected in somewhat different ways. I hope to shine a light on how MG impacts the lives of the people dealing with it.
The following was written by Kimberly Stillwell.
My Myasthenia Gravis Story!
I started out in 2007 having found a tumor that was 5cm in size in between my lungs. I had no symptoms whatsoever and no pain from this tumor. I had a severe chronic cough that I could not get rid of. So, the Dr scheduled several tests from blood work to CT’s. It was after several CT Scans that the tumor was finally found and I was sent to see a surgeon.
I had the thymoma surgery and had my thymus removed in March of 2008. The tumor was not cancerous, thankfully. Not long after that, I started getting to where I was not able to eat and swallow any type of food at all. I lived off of only Ensure for almost 2 years.
The Doctors did all kinds of tests and couldn’t figure out what was wrong with me because I already have CMT (Charot Marie Tooth) another neuro disease. It is very rare and the doctors told me it was almost unheard of for someone to have two neuro diseases like I do. So, it took even longer for me to get a diagnosis and the treatment I needed.
In December of 2010 I ended up having my crisis and ended up on a ventilator and was literally on my death bed. The doctors called my family in. Finally there was one doctor that suggested that I have MG. While I was on the vent, they started treating me for the condition saying that if I had it, the treatment would work and if I didn’t, nothing would happen.
With that doctor and many prayers I was getting better and was back at home with my family a few days before Christmas. I still have many MG symptoms daily, like having to wear sunglasses to drive or I will get blurred vision and drooping eyes. I also have to watch myself in the heat. But as long as i take my meds daily and see my Neuro doctor as required, I am much better today. I have never had to take any kind of meds daily in my life and my CMT isn’t very bad.
However, living with MG and taking my meds two times a day took a lot of getting used to. I am a mom of four kids who are active in sports too. I do what I can and try to live my life as normal as possible. However, it is sometimes hard not being able to do many of the things that you want to do. I can’t run or walk up steps easily and some days I find that I can get exhausted just by doing daily housework.
Life with MG takes a lot of adjustment on both the patient and our families, who become our greatest support system. It really helps knowing that there are the MG support groups out there too and we meet and make wonderful friends with those who know and understand what we are going through.
Thank you so much for sharing your story, Kimberly.