Like many, my diagnosis was not easy to come by. I had traveled down the road of uncertainty, fear and anger before finally being diagnosed with yet “another disease”. I often wondered if this was indeed the one I had, the one that was making my body a stranger that I met in the dark alley that beat me up and changed me forever. I had been misdiagnosed more times than I could count. I rode the crazy train too, being the number one passenger. Especially if you asked numerous doctors who had given me the one way pass with no return. But I kept pushing, fighting, forcing doctors to listen to my anguish and tears.
I almost gave up, until one day I went to see my retina specialist. This dear doctor had seen me through many stages of my undiagnosed illness. The good, the bad and the ugly, he had met all forms of it. He kept saying there had to be more that was being missed. I will never forget the words he spoke to me the day that changed my life. He said “I’m going to give you some medicine. Will you be willing to take it and see if you notice any difference? It’s off the chart, just between us. I’m not giving you a name, I just want you to fill it and try it and call me in the morning.”
I thought sure, what the heck. I don’t even care. Maybe it will kill me. I’m so tired of fighting to find a diagnose that I don’t care if it works or knocks me out.
I had it filled and had my mom watch me. It was an instant change. It was as if I were superwoman! I came from sitting in a wheelchair to being able to move and talk and feed myself all within the same night. What was happening? Was this a fluke? What in the world did he give me? I wasn’t sure what to think. I had my doubts and questions but all I knew is that it felt as if he just saved my life, and I was thankful.
I called him the following morning and was so excited I couldn’t stand it! I relayed the great news. I’m not sure who was more excited, me or my doctor who had tried so hard to help me when no one else would. He had been seeing me twice a month for the longest time. He was my sounding board and sanity who tried to help me figure it all out. He said ” Felicia, you have Myasthenia Gravis. It was a long shot that we tried this and I believe, my dear, we finally have an answer for you. I need you to see a neurologist and have him confirm this diagnosis”.
What?! You want me to see another neurologist? I had seen everyone in the county and they had all written me off and said it was in my head. After all, being in your early 20’s apparently gave me zero credibility in the way that I felt. I was scared to see yet another neurologist, but I did. It was the best thing that I could have ever done. I saw Dr. Weiss with the MDA and he confirmed the diagnosis and was astounded that everyone else had missed this. EVERYONE. I started on mestinon and was scheduled for a thymectomy (major surgical procedure to remove an organ called the thymus gland that is believed to play a role in MG) all in a matter of months. I had a complete transternal thymectomy and was terrified. Scared again of something going wrong and what if they had been wrong and they slice and dice me for nothing? But in January of 2009, I underwent my surgery and came out stronger than I had ever been in my life. After my recovery of course! I went into remission. My life changed forever that year. I had my life back. I could be the mother and wife I had always wanted to be.
Sadly, it all came to a crashing halt when my “honeymoon period” was over. Remission lasted a year and a half for me. I was back full blown with my worst enemy. It’s been a bumpy road since then but I have learned more and I’ve become the person who knows what a real, life-long struggle is. I know that not everyday should be taken for granted. I know that the struggles are real and valid and that I can overcome each day by starting again the next. It may be my reality that I have to sleep for a week straight. Maybe I can’t cook, or my husband has to feed me my meals. Maybe I can’t walk the dog. Maybe I Netflix all day and pretend I’ve had an exciting day when in reality it’s just another day of struggling.
I do. I survive. I fight. I have Myasthenia Gravis. I’m proud to say that. I’m proud I have a name to a disease that almost took my life before I even knew what it was. I’m glad to have a name that ends the battle of all battles- the unknown. Now I just battle one thing. I have Myasthenia Gravis, I will survive and fight until my last breath.
Wife, Mother, Daughter & Fighter!
Story edited by Rebekah Dorr