2020: We’re still #MGStrong — even when we’re apart.
There will be challenges and many alterations in the raise awareness plans due to the COVID-19. I will persevere staying #MGSTRONG, keeping my faith through the adversities while participating in virtual events and sharing my 2020 #MGSRONG story.
One morning at daybreak I ventured through the wet dewy grass to the small vegetable garden to pick the vegetables. My balance is often unsteady, and as I reached to pick a ripened tomato I began to fall into the tomatoes. I was fortunate that morning that I caught myself on a tomato gage. At that moment the lyrics of a children’s song came into my thoughts, which brought a little humor at the beginning of my day, “I Think I Can.”
When life takes a tumble backward how do you respond? Do you respond with a negative attitude “I can’t do it,” or keep a positive attitude such as a fairytale, “I thought I Could?” “I AM #MGSTRONG,” and keeping my faith through the adversities.
Maybe my coping mechanism is different than most, but I developed a persevering can do attitude when I was in my early teens from my Mother and piano teacher. When I made the comment to my piano teacher, “I can’t do this,” she shook her #2 pencil at me and said, “Can’t never could do anything.” I first felt fear and then tears filled my eyes, but as the years passed it left a lasting impression in helping to develop the attitude which I have today.
I was living the life of a very happy, healthy, active mid-fifties year old, and I had all the energy that life had to give with some extra at the end of a long day. I was eating a healthy diet, exercising seven days a week. working forty plus hours a day, and battling the odds of having hereditary high cholesterol and hypertension.
Life can change drastically when diagnosed with an autoimmune disease, and unfortunately having one autoimmune disease often leads to others, such as in my own life. I thought that I had my life all planned out, WRONG! My last plan in life was not to be slowed down by a rare neurological disease, but I learned that life does not always follow the journey we have planned. My symptoms began in 2004 with sudden onset of extremity weakness, which improved after a couple months. Two months later I began to have jaw weakness while singing. In 2006 I developed bilateral eye ptosis, which is eyelid weakness, along with the facial and jaw weakness. After a night of rest the ptosis was resolved and I would go to work, but the weakness returned each evening. This continued for several months until one morning I had to call into work, and say that I was unable to work, due to bilateral eyelid ptosis. That day, through clinical evaluation and testing I was diagnosed with Myasthenia Gravis, also known as MG.
You may question what is Myasthenia Gravis? MG is a rare chronic neuromuscular autoimmune disease, which causes weakness of the voluntary muscles that control basic movements that we often take for granite; walking, talking, smiling, eyelid weakness, double vision, chewing and swallowing, arms, legs, and breathing. Then there is the Myasthenia Crisis, when the diaphragm becomes too weak to effectively breathe. The patient will often be placed on ventilator assistance. There are approximately 100,000 Americans that cope with the debilitating effects of MG. Myasthenia affects individuals of all ages, genders, and races. The Myasthenia Gravis Foundation of America is the only national organization dedicated to research, awareness and advocacy efforts to help MG patients. www.myasthenia.org
At one time I was very shy and I definitely was not a public speaker. Why would I even consider becoming an advocate for MG? Through the process of an insurance denial in 2014, I realized my healthcare is exactly that, mine. As a patient trying to live their best life with autoimmune disorders, I realized that I am my best advocate. I stepped out of my comfort zone and took an a active role of self-advocacy writing my own appeal, because I knew that no one walks in my shoes, as I do not theirs.
After receiving the approval from the appeal, I stepped out MG Strong as an advocate, organizing the first Southern IL MG Walk through the MGFA, and sharing awareness with others that do not know about MG. The Southern IL MG walk now has MG patients and participants from the areas of Southern IL, Western KY, Western TN and MO. www.mgwalk.org
I have learned that I AM #MGSTRONG, because when I am weak I am strengthened by keeping my faith through the adversities. I appreciate the opportunity to share with you, as I raise awareness of MG. I may walk the shoes of the rare disease MG and several other autoimmune diseases, but it is not the end of the world. I am thankful each day that I have kept a persevering, can do, positive attitude, and I truly know and understand the importance of the expressions: “Take time to smell the roses,” and “Live life one day at a time.”
Written By:
Paula McGinnis
MG Ambassador and Southern IL MG Walk Coordinator
