If you follow me on Instagram or keep up with me on Facebook, you may have noticed an increase in “teal” activity. Almost every cause and disease has a day, week, or month dedicated to it. As you can imagine, there is a lot of overlap. But for me, June is Myasthenia Gravis Awareness Month, represented by a teal ribbon (which again, shares a whole other host of worthy causes like ovarian cancer, anti-bullying, and PTSD). I have had the neuromuscular autoimmune disease for 12 years, 13 this Christmas.
I could start out by explaining the specifics and medical jargon associated with MG. It’s easy to google, though like any disease, you have to be careful what you read. When I was first diagnosed, my mom had binders full of information from doctors, test results, and the internet. It was strictly forbidden for me to read from them. It was overwhelming for an 11 year old girl to take all of that in.
What does it mean to have a chronic illness? There are a lot of terms to describe what is going on with my health. I call it MG, Myasthenia Gravis, “grave muscular weakness” in latin. It falls under the umbrella of the Muscular Dystrophy Association, but its not MD. It’s a neuromuscular disease because it affects my muscle function, but it’s not a genetic disorder. It’s autoimmune. But what it boils down to is having a chronic illness means you have to know your body and pay attention to it whether you like it or not. These days, MG isn’t usually fatal. Advances in modern medicine and the progression of research mean that for the most part, I’ll live a long and mostly normal life. But I need to pay attention to what my body is telling me, and there are definitely times when I don’t want to listen.
My mom and my husband have been my biggest supporters, outside of my pediatric neurologist who diagnosed me when I was 11 year old. I eat healthy, clean, unprocessed foods (for the most part). I exercise (this is a big one, probably worthy of its own post), and I sleep at least 7.5 hours every night (ideally 8.5-9). I take my medication as directed, and I seek out acupuncture and chiropractic care when I start to have symptoms flare up. I try to avoid stress, but this is my one down fall. Worry is basically my middle name, and I do it like it’s my full time job. This one will probably be a life long learning curve for me, but I am hopeful that I will gradually practice what I know in my heart to be true: when I look at the beauty and splendor of the world around me and truly believe that God created it all with good intentions, why should I worry about His provisions?
This is just the start of a dialogue that I will continue through the month. If it’s something that doesn’t interest you, then you are more than welcome to pick back up with regular art posts starting in July. Otherwise, please let me know if you have any questions. I would be happy to answer them!
And in case you are looking for a great explanation of MG in simple terms, follow this link. It will help you have a better understanding of my blog posts this month, and long term probably my painting as well.