In March of 2016, I started noticing that I was tired all the time. My body felt heavy. My eyes were weak. Since January, I was pretty much a gym rat. Living at the gym at least 5 days a week. But things that I used to be able to do with ease started to become difficult. My body was always sore and recovery time was longer. I didn’t get it. I was supposed to be getting stronger not weaker. I thought maybe it was just a cold or flu. So I took some vitamin C and kept it moving. I was on a mission to be sexy by Summer 16.
One day while at the gym, my vision was blurry. The picture wasn’t in focus. I looked in the mirror at myself and noticed that my left eye looked a little different than normal. I packed it in early and went home. Over the next few days, the blurry vision occurrences increased. This came with headaches and a lot of face pain and fatigue. As someone who suffers with both allergies and chronic sinusitis, I thought my symptoms were kicking in earlier than normal. I took meds but the situation didn’t improve. So I made a doctor appointment with my ENT (a month away smh).
In April, I went to the ENT who said that everything checked out normal. But I knew that was not the case. So I made an appointment with an eye doctor. Despite my worsening symptoms, I tried to maintain my fitness regimen. I had signed up for weekly 5k races with my mom. The day after the first race, things hit an all time low. I woke up to my left eye drooping and being immobile. Here is a pic of my face. Be warned it’s not cute at all.
Clearly something was wrong. I went to the eye doctor. Explained what I had been experiencing. The tech had me do the standard vision tests and all that jazz. I passed them all. It really wasn’t a surprise to me. I’ve always had great vision. I could see out of each of my eyes individually but when they were both open, the picture was blurry. The actual doctor came in and redid the tests. You know the test when you follow their finger with your eyes? She noticed that my left eye was not moving at all. Immediately she got up and ordered more tests. She sent me for a MRI and referred me to a neurologist. Scary right?
My MRI results came back normal. My trip to the neurologist was interesting. After listening to my story and looking at me, he said I think you have Myasthenia Gravis. Mya-whet?!?! He tested his theory by doing an ice test. Took a cold piece of ice and applied it to my eye. When he took it off, my eye opened right up and I could see again. Short lived victory though. Within seconds, it began drooping again. His diagnosis was preliminary. In order to confirm (and receive treatment), I would have to undergo more testing (blood tests, an electro test and 2 more MRIs). I was given a follow up appointment a month later.
I went home and did some research on what my tentative diagnosis was. From the looks of things I had it. But I couldn’t get any help until I was officially diagnosed. I could do nothing but wait until my follow up appointments. At this point I was so frustrated. I had seen 3 different doctors. 10 different appointments. Paid over $500 in copays and deductible and I was still no where. My symptoms were progressively worsening. My vision was blurry 80% of the time. I had headaches everyday. Not to mention the unattractiveness of a droopy eye. My speech started to slur. I was having difficulty walking up the stairs of my townhome. I started wearing an eye patch to not only help with the vision issues as well as cover up my unsightly eye droop.
I was the epitome of a wreck. Physically, emotionally, mentally and spiritually. Physically my body was failing me more and more each day. I would wake up and not be able to open my mouth all the way. I would have trouble swallowing water and end up choking. With each physical development, I became more depressed. I would cry every time I looked in the mirror and saw myself. Every time I would speak and could hear the slurred speech or feel the lazy tongue. Mentally I was depleted. All I could do is think about what was going on, how I had no answers, I was obsessed with worry. I couldn’t sleep even though my body was exhausted. And spiritually I was tested. What type of sick joke was God playing on me? To give me a disease with the same initials as my name. MG with MG. Ha. Clearly he was sitting up there in need of a good laugh and figured lets add this plot twist to what was seemingly an already steady sitcom of a life. Everyone kept telling me to pray, but I didn’t feel like it. I was angry, hurt and confused.
Finally the day of my follow up appointment came. All my test results returned normal. But the doctor was sure I had MG anyway. He said because of the nature of MG itself, its possible to have normal labs but still have the disease. So he started me on treatment and sent me on my way. Now as relieved as I was that I finally had an answer, I finally could say what my problem is, the doctor didn’t leave me with any hope. He basically said, “This is what you have. You can’t get rid of it. You’ll just have to take these meds and live with it”. It was quite discouraging. Just like that, the life I knew was over. The life I thought I would be living was over. Game over.
My mother (Thank God for moms) refused to take that as a final answer. She researched and found a specialist nearby that deals specifically with MG. While is does accept my insurance, so I have to pay out of pocket, I couldn’t be any happier with him. He’s given me hope for a quality of life again. He’s very knowledgeable. He takes the time to talk with me, answer my questions, help me through this transition. Since seeing him, my MG symptoms are finally under control. Now I do have a host of limitations and I’m a walking talking pharmacy. But my eyes are no longer drooping, my speech is normal, my vision is back to normal and I can make it through an entire day without feeling like my body is about to shut down.
I’m still new to MG but it’s going to be with me for the rest of my life. I’m learning to deal and adjust daily. My doctor seems hopeful that in time, I will be able to live a close to normal life. As I’ve come to terms with my disease, my focus is not only managing my MG, but also finding the purpose that was birthed through this situation.
I’ve accepted what is. I’m letting go of
what was. And embracing what will be. I’ll be documenting my MG journey here so stay tuned.
You can find more information about Myasthenia Gravis here.