MG story 3: Life Changing

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"The following is raw & from my heart. I'm posting to give the one's I love a glimpse of my reality, no sugar coating. I'm posting for others who have/are currently walking my steps know, you are not alone. I do have happy days, Faith, hope for remission. I'm not looking for sympathy I'm just sharing from my heart:

Once upon a time there was a girl who climbed trees, danced in the rain rode her bike on long adventures, she swam in the Great Lakes, fished, and played hide and go seek until after it was dark. That little girl grew up and she worked hard, she was a busy wife, she was a busy mom, she was a successful career woman, she volunteered, she loved to sing; even on stage, she was not afraid to speak to crowds or strangers.

Many times strangers became friends. She was very social and very active. She went to the gym at least 3 times a week, she took her kids on spontaneous adventures, she took trips, she cooked, she cleaned, she kissed boo-boos, she loved having people at her house and many came over often.

One day that woman fell and strange things happened to her eyes. The doctors shrugged, they didn't know why. Soon after, a stroke they thought she had at the young age of 31. Alas, after many tests, they were wrong, but she was determined and wouldn't give up. She had two children she adored and a husband who she not only loved but was also her best friend. She had friends and clients who relied on her. She knew there was an answer and she was going to find it.

6 months later a name was given to my disease - Myasthenia Gravis.

It's now been 5 years and I continue to decline. Still strong in the head but weak in the body. I won't give up. I love too many people to give up. I love my husband and kids too much to give up. I love the amazing friends I've made fight this illness to give up. Most days I keep my chin up. I go to events and cheer on my kids. I go to family gatherings and chat. I've spent countless hours with newly diagnosed patients...walking them through treatment options, ways I've learned to live more comfortably with this disease, reassuring them that I personally know people who have had remission.

But if I'm honest, if I'm raw and brutally honest. .. I'm tired of the medicine. I'm tired of the side effects. I'm tired of the weekly IV's. I'm sick of canceling plans. I'm exhausted from all the long hospitalizations. Hospitalizations that bring many unknowns, new doctors, complications. I'm scared.

I'm currently on an experimental chemotherapy treatment. It makes me sleep, throw up, forgetful, and not feel like me.  I've suffered from some pretty severe side effects after my August dose - including extreme fatigue, nausea, a 45 day long migraine the severity of which no word exists, severe memory loss, and depression. 

5 years ago life as I knew it ended. The strangers I meet are insurance reps on the phone...doctors, nurses, respiratory therapists, and patients. I miss me. I miss my life. I miss driving. I really miss singing. I miss cleaning. I don't look like me. My house doesn't look like mine. People stopped coming over years ago. I'm in the hospital so much, with each stay, less people visit. My last stay I was in a coma, on life support. More than anything, I'm sad that my kids miss out on events because of me. Or they participate, but my face is not in the crowd. Don't get me wrong I'm there when I can be. But the decline seems more rapid and the doctors eyes are more sad as time goes by. The neurologist I trust most patted my knee last time he saw me, I saw the fear in his eyes when he said 'we're running out of options.'

This is my true story. I won't give up on me. I won't give up on you. I won't stop laughing or making my friends and doctors laugh. As long as I am here I will keep fighting for remission. But I wanted to let you know what it's really like.

This is one of the hardest things I've shared, but it's true."