I am a 42-year-old business woman who was diagnosed with Myasthenia Gravis almost 10 years ago. It landed me on life support on Christmas Day, 2018, made me a stigma amongst former friends, and contributed to the end of my marriage, but I do not let that stop me. I’ve been blessed to become a successful business owner who helps many underprivileged business owners get funding, and I help disabled people start businesses of their own. My focus has been on informing people of the mental effects of having Myasthenia Gravis.
I feel blessed to be a voice of this illness, to share my story with others and bring awareness of what people with MG experience.
Tell us about your MG journey
It was rough! It started out with one incident - I went to a friend’s house one Sunday night, ate a cookie, and a few minutes after that my eyelid drooped. I couldn’t see properly out of my eye. I went to the ER, and they admitted me to the hospital. At the time, I was studying to be a paralegal, and it was finals week. Since the doctors had no idea what was wrong, I stayed in the hospital almost a week.
My eye went back to normal for about a year. Then my voice started messing up. I started having a hard time swallowing. I remember sitting at the Thanksgiving table eating some turkey, and my chewing was off. It was laborious trying to chew a piece of meat. I told my then-husband and friend, “Something is wrong with my mouth. I can’t chew right.”
My then-friend who happened to be my managing attorney told me I was crazy. I would go to the doctor, and they didn’t know what was wrong. I went to one doctor, who supposedly was a specialist, and she told me I needed jaw surgery. I got up and walked out of her office.
That’s when I started to do my own research. By this time a few years had passed. I had lost about forty pounds from not being able to eat well. I went to the ER one night — I couldn’t talk, could barely cough or sneeze, and I had a notepad and pen with me with some research I had done. I asked a resident doctor, a Black lady, to test me for myasthenia gravis. I’ll never forget it - the look she gave me when the test came back positive for Myasthenia. For some reason, she was the only one I noticed who was empathetic about the situation.
I started taking medicine. The medicine helps when it wants to. I would go into the hospital every year, twice a year – springtime and wintertime. I would get sick with an allergy or a cold, and it would take all the strength I had. I couldn’t close my eyes, could barely swallow, couldn’t cough or sneeze. It was like I was becoming a vegetable. I couldn’t smile, and my looks had totally faded.
In 2018 I had a big crisis. I remember going to the spa with my friend and son. I was very weak. I went home and felt my strength literally leave my body each minute. I asked my daughter to bring me soup, but I couldn’t swallow it. My muscles in my esophagus had begun to shut down. My chest felt heavy from shortness of breath, and although I didn’t want to, I knew I had to go to the hospital. December 24, 2018, I went to the hospital and passed out trying to use the bathroom. I woke up in a hospital bed on December 25 with an oxygen mask on. It was so uncomfortable.
I remember looking at the clock to see what time it was, and everything looked blurry. I remember barely being able to turn my head, and my arms felt like they had concrete weighing them down. I tried adjusting the mask and accidentally pulled the hose from the machine. I tried to take a breath, and nothing happened!
So I lay there trying to muster up the strength to push the button to call the nurse, all while suffocating. This African nurse walked in, and said, “What’s wrong, honey!” I couldn’t talk, couldn’t breathe, and was using what little strength I had to try and point. She saw the hose had been disconnected. She hurried and plugged it back into the machine, and I remember scribbling on my tablet, “LIFE SUPPORT” right before passing out.
I woke up on a cold table, surrounded by medical staff, and bright lights over me, with a nurse putting a catheter in me. I couldn’t move or turn my head. I kept my tablet and pen by me the entire time and chose to remain cognitive. I wanted to know what they were doing to me while I was intubated. I remember the respiratory therapist had to come in several times a day and push this apparatus down the tube to remove the mucous.
I don’t wish intubation on my worst enemy. I was intubated for two weeks while I went through treatment. It was my first time having the Plasmapheresis done. I had to write things like, “Please turn my head, please lower my bed, please turn me, please wipe me.” I was a baby all over again. I still have that notepad from that time in my life. I’m surprised the nurses could read my writing. I was writing with my left hand, and it was so weak, I could barely hold the pen. The entire time, I continued scribbling my morning meetings with God and telling myself, “This too shall pass.” I remember, a nurse came into my ICU room, and I could tell she had more experience than the others. She came in to clean the incision in my neck that had the tube in it for the treatment. She titled my bed back at about a 45-degree angle and went in. The pain was excruciating from the pressure of cleaning that area. I couldn’t yell, couldn’t move, I just had to take it.
Interestingly, I had planned a trip to Australia, and I didn’t figure I would make it. So, I wrote a request for the doctors to write me a letter to cancel the trip; it didn’t happen. I got out of the hospital a week before the Australia trip. I said a prayer and decided to go. I told my neurologist, and he was like, “You’re going down under by yourself!” I said, “Yes, I’m going to have my angels with me.” I requested special accommodations at the airport and boarded a business class flight to Melbourne, Australia. I wasn’t about to lose 40% of my money for canceling that trip. And I am so glad I went! YAHWEH, blessed me with a smooth trip that I’ll never forget. It was so inspiring that I wrote my first book, a children’s book, “Diary of Your Favorite Animals Near Extinction Volume 1.” I visited protected animals on a safari, and they reminded me of myself – saved from extinction.
I did so well after that. It’s like I was me again. I got my smile back. I gained my weight. My business really took off, and I was able to do things humans are supposed to do like run, eat a meal, laugh and smile. I felt my emotions change. It’s like my joy had literally been taken away. And after the life support and treatment, it returned. From my experience, I can tell MG does something to you emotionally.
A friend of mine got upset with me because I went to Australia, and I never heard from her again. That was disappointing. The steroids caused me to gain an excessive amount of weight, and since the Plasmapheresis is temporary treatment, I started losing my voice again, and the symptoms came back.
I searched for a doctor that I knew about when I was a child. He’s a functional medicine doctor. I know we are all different, but the doctors have a cookie cutter method for handling this disorder, and I’m not satisfied with that. So, I have dug deeper to see what deficiencies I have and correct them. I last went into the hospital in October of 2021. I read that low levels of Vitamin D can cause autoimmune symptoms. I asked the doctor to check my levels and they were excessively low. I see a neurologist, a functional medicine doctor and a primary care doctor. I can feel myself get better and better each day. It's a process, and I believe in a power far higher than any human. Almighty God has the last say over my health.
Why is it important to you to be an advocate?
People with MG are ostracized. It takes away your smile. Because of this illness, I have had a hard time with my weight, difficulty swallowing. I’ve had people say I was drunk due to my slurred speech. I struggle going out with friends because I’ve had such difficulty eating a meal. A lot of people don’t understand the strength it takes sometimes just to hold up my hand or put on a shirt. It’s an invisible illness, so I want more people to understand the difficulty - the social difficulty - of having MG. It takes a toll on you emotionally and can cause you to feel low self-esteem.
What do you wish others knew about having MG?
It takes empathy to view a person with MG. Picture your muscles just giving out after trying to work out. When that personal trainer says, “just one more!” And you know you don’t have one more; your muscles are exhausted. That’s what it’s like for people with MG. We’re not pretending.
It is even a bit traumatic, because if you have a career and a social life, that can become non-existent if you have a hard time finding the right treatment. This is what I’ll say to help you understand a bit better. Picture the last baby you took care of. Picture how that baby is when it’s learning to walk. Its muscles are weak, it can barely stand at times. If you let it go, it will fall flat on its face! Put a plate of chicken in front of that baby, it won’t be able to eat it. Its chewing muscles are weak. Well, thankfully due to medication, MG isn’t that bad unless a person goes into crisis like I did, but the muscles still get very weak from time to time, and sometimes the medication doesn’t help. Be patient with people who have MG. Don’t allow them to overwork themselves. They are down for days if they do. Help them as much as possible and show them love.
Tell me about your professional life.
I’m a business and bankruptcy paralegal who founded a business consulting firm, Moore Financial Services, in Dallas, Texas. I’ve been at this for almost 12 years. We help people start businesses properly. We help disabled people start businesses of their own. We work with professional athletes to start their businesses properly. We also serve disabled pro athletes who have suffered injury on the field. They want to start businesses to supplement their income, and we help them start their businesses properly. I have authored five books since 2019, and I’m writing a sixth one about the journey I have been on with Myasthenia Gravis. It should be completed in November of this year.
If you had one piece of advice for other MG patients, what would it be?
Love yourself, no matter what happens. It’s not your fault. I know it’s hard sometimes because you don’t even look the same at times, and you have difficulties doing things you love, but we have a better hope for the future. I believe in God’s word, and it promises at Isaiah 33:24, “No resident will say I am sick.”