Thank you for visiting my "MG Walk" personal fundraising page!
I would like to give you a little background information about me and my experience with Myasthenia Gravis.
It was around April of 2013 when I first noticed weird things going on with my body, but I put it off thinking that I just needed to get back to hitting the gym. Needless to say, that didn't help. Things were getting more weird and becoming harder to hide.
It started with bouts of double vision; spells that would come and go. It wasn't until I spent the weekend in Warrensburg visiting college friends when I realized that something was horribly wrong. I was literally seeing double of everything and I had to force myself to drive alone from Warrensburg back to St. Louis. That was the longest, scariest drive in my life.
After that, I noticed that my arms would become quickly and easily weakened while I was washing my hair in the shower or doing other small, repetitive tasks. For the next year and half I dealt with weird, random things happening to my body before I was able to see several doctors and specialists about why these things were happening. I vividly remember my first neurologist appointment - after a quick exam he sat down and said, "Well, given your history of anxiety I believe that it is nothing more than that". I nodded and agreed with him, but inside I was in utter disbelief. I left the room and walked out to my car where I immediately burst into tears. Another horrible drive home....why did no one believe that there was something more serious going on with me??
Then something unexpected happened....I was referred to a new OB/GYN (thanks Tracy!) and since I was desperate to get answers from somebody/anybody! I talked to him about what was going on. He very simply suggested that "maybe it was some type of autoimmune disease like Lupus or something". As soon as I got home, I spent the WHOLE night researching and reading through the huge list of autoimmune diseases. Some sounded like they could possibly be the answer, some not at all....then, like a smack to the face, I read the description for Myasthenia Gravis and I could literally check off every single symptom! I was simply ecstatic at the thought that I finally had something to hold on to, something to call it by.
That happiness faded quickly and was overshadowed with excitement when I found out I was pregnant with our son. I knew the pregnancy was going to take all of my attention and energy. But honestly, I was also sad...not because I was going to be a mother but that I might not be able to be the mother that he needed. I was scared that I was bringing him into a world of mess that he didn't ask for.
My pregnancy was rough, but I sure as hell worked all the way until I was 39 weeks. During that time I dealt with even more severe double vision, ptosis (drooping of the eyelid), and very weak muscles in my mouth -- some days I could barely chew my food or swallow it. It was so bad that sometimes my mouth would just stop working and food would fall out of my mouth. I quite literally had to hold my mouth closed with one hand and use the other to help myself chew. Drinking anything was a disaster, but I quickly learned that straws are made from heaven! But even then I still had a hard time. Another embarrassing thing I dealt with was dysarthria (slurred or impaired speech). I would be talking fine then suddenly my voice became very weakened and nasally so much that it was hard to hear or understand me. Not an easy thing to deal with when you are expected to talk all day every day at work, but I managed.
One of the harder things for me then (and now) was trying to explain to people what was going on. Its hard for others to understand when they see you can being doing something perfectly fine one minute and the next you can't do anything, then you come back 5 minutes later and you are fine again. It sounds crazy, it looks crazy. Having an "invisible illness" is quite possibly something contrived from evil.
Forward to 2015...the day finally came when I was schedule to be induced but it didn't go as planned, my body just wasn't cooperating. I was rushed off to the OR for a C-section...and its all quite a blur, but I'll never forget hearing our son cry for the first time, seeing that head full of such dark hair and hearing the nurses in awe as they exclaimed that he was "the strongest baby they'd seen!" after he did a push up on the table they were cleaning him on! ((This bit right here was very important for me, because I was so worried that he may have been born with transient neonatal MG or congenital MG. ))
Back home, every little task was a workout; a marathon that I was not prepared for. From breastfeeding to changing diapers or giving baths to simply holding him in my arms - everything I did used some form of assistance. Being able to adapt in any given environment was (and still is) the key to our survival.
When he was about 2 months old, I was finally cleared by my OB/GYN to meet with my new neurologist where I was ordered to get a lot of blood work done and to complete several other diagnostic tests. Let me just say, if you don't know what an EMG is...you don't want to know. After all the results came back it was clear that I did indeed have MG. In that respect, I feel lucky...there are so many who either go undiagnosed or misdiagnosed because they are seronegative - the condition in which they have MG, but none of these tests are able show that.
The first treatment given to me was a high dose of Prednisone and drug called Mestinon that is taken three times daily. The next day after only my first dose of Prednisone, I was able to hold a smile again and whistle!! This was huge and gave me the boost of confidence I needed that everything was going to be alright. I now also take another immunosuppressive drug called Azathioprine that has helped to taper slowly off of the Prednisone.
I have to stop here and say: from day one, my husband was by my side. He never doubted me, he always believed me...he has always encouraged me to do what I need to do for myself and for our son. He has always given me support when I needed it the most - physically, mentally, emotionally. I don't always like to admit that I need help sometimes, but there is a LOT of credit that belongs to him.
Thank you Corey, I love you to the moon and back!
Our son is now an energetic 2 year old full of life and love! He is so helpful and supportive without even knowing, we are beyond blessed with him!!
2015 was a hell of a year....on top of that fact that it was the year I was diagnosed with MG, my husband and I bought our first house together, had our first child, planned our wedding and got married!! A year I will never forgot. I've had a couple health related scares arise in the last year, but I've been able to bounce back quick enough that I've almost forgotten them. I'm currently seeing a new neurologist and am excited to be on the path of wellness! I hope I was able to give you just a glimpse of what life with MG is, there are so many more things I could tell you about. If you want to know more, I am happy to answer any questions- awareness is so important. Please take a few minutes to browse the MG Walk website and see what its about, it's a great organization!
I am excited to be supporting the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis.
MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
Thank you for taking the time to read all this and for considering helping in any way.