I’ve probably written about Myasthenia Gravis month 5 or 6 times. But, it is important to teach people what MG is and to ask for help in the form of donations or sharing.
Myasthenia Gravis and Me
I have had Myasthenia Gravis for 11 years now. My diagnosis happened when my daughters were 4 and 15. My husband and I were married for 6 years. And I had just turned 40.
You could say that this was one of the worst times to get news like this, but when is it a good time? I felt like I was getting old when I hit that 40 year-old mark. Add to that a diagnosis that would change my life forever and it seemed like I was sinking into a deep dark hole.
The worst feeling, though was about my daughters. My fear that I wouldn’t be able to take care of my youngest, Sammi or be there for the difficult teen years for Alicia. My worry that my husband would leave me kept me up at night.
Lessons from MG
Thankfully, none of those things happened. It was very tough to be a parent, but I learned that it’s not what you can’t do, it’s what you can for your children. Physical stuff matters, but not as much as emotional. Taking time for them, listening to them and laughing with them is the key to being a good parent. It helped me feel better emotionally as well. My husband is one of the best partners and fathers anyone could ask for.
I have good days and bad. I do my best to focus on the good. Imagine it taking a chronic illness to teach me that?
What is Myasthenia Gravis?
MG It is a neuromuscular disease that weakens the muscles. It is one of the Muscular Dystrophy diseases. Myasthenia Gravis can affect facial muscles, including the eyes, especially the eyelids and the mouth. Sometimes it is hard to smile. The neck, arms and legs are hit pretty hard too. The most frightening is when it affects swallowing and breathing. With MG, everyone’s symptoms are different. Some of us just have problems with our eyes, some of us can’t keep our heads up, and some have us need a vent to breathe. Because of this uniqueness, MG is often called the snowflake disease.
There are treatments, but no cure. The MDA and Myasthenia Gravis Foundation are working on better treatments and finally a cure. I pray that one day, MG is wiped out for good, even if it is after I am gone.
Have you ever heard of Myasthenia Gravis?