I thought it would be a good idea to explain what this disease has done to me. Medically it is an autoimmune disorder where my immune system attacks my muscle receptors. This means that when my brain tells my arm to lift up and sends a nerve impulse to the muscle sometimes the message makes it to a healthy receptor and sometimes it ends up at a damaged receptor resulting in the inability to lift my arm or at times it is simply more difficult to lift my arm. My brain, nerves, and muscles are all there and the neuromuscular junction has many receptor sites to hit but the fact that my body thinks the receptors are a virus doesn't give my system the same shot at making the connection as it does in a healthy person. I liken it to a marrionette. With all of it's strings a puppet master is able to move the puppet in any way he/she commands, if you start cutting strings, the puppet becomes a rag doll. Is anyone else humming Pinnochio music in their head..."I've got no strings to hold me down, to make me smile, to make me frown:)" Thank goodness for parentheses and colons:):):) Okay so that is the technical mumbo jumbo dumbed down.
People with myasthenia can have different muscle groups attacked at different times. In my case my diaphragm was hit the hardest which affected my breathing and subsequently the only hobby I am passionate about - singing:( The first flare up I had also went after my wrists, grip, and arm strength. To apply it candidly, if I wanted to unload the dishwasher the first dish would feel normal to lift, the second like a 5 pound weight, the third like a sack of potatoes, and the fourth I would drop if I attempted it. With Myasthenia, the more you use the muscle being attacked the less it responds. It is possible to recover from an attack with rest and medication, primary immunosuppresants and IVIG or Plasmapherisis. Mestinon is a go to daily med for myasthenia which is a great help but it doesn't stop the destruction of the muscle receptors, it just sends more messages from your brain so there is a greater chance of the message making it to the muscle.
My second major attack went after my ankles and legs and I was unable to walk at all for 48 hours. Even after 5 days in the hospital with IVIG treatment I could not lift my foot off the ground and was sent home with a walker. Thankfully I recovered and by the end of December was able to ditch the walker except for bad days. An extra special thanks to Pam my visiting physical therapist. Her determination to help me recover and her compassion to learn about Myasthenia made a very difficult time a little easier.
Which leads me to the next part of the daily struggles with this illness. I tow a fine line between keeping active enough to maintain muscle mass and overdoing it resulting in muscle attacks which lead to atrophy. I have days where I feel normal for four hours and like I am paralyzed for the rest of the evening. I have days where I have energy for 8 hours and then I start tripping on my toes. The most embarrassing symptoms for me are when it affects my speech and my eyes. I end up with slurred speech, a hoarse voice, my mouth stuck in a 1/2 frown drooping on one side, and unable to open my right eye. It has affected my freedom in that I have frequent bouts of double vision caused by minor misalignment of my eyes from the muscle weakness making it scary to drive. Thank God for my in-laws, they have done more than I can ever thank them for. They have picked up my kids, gone to the grocery store when I couldn't tolerate the walk, babysat me so I could take care of my children while Pat goes to night class, brough meals, and on, and on.
And I have to give equal thanks to my Grandparents for the many hospital visits and nightly phone chats, my dad and step-mom for sitting with me during my three hour in hospital IVIG treatments and the many trips back and forth to Ann Arbor (and Trader Joes:), and my sister for working at my GP's office and making seemingly impossible communication possible.
It is hard to explain to people when i look normal why I have to park in handicapped parking, why I have to sit alot, why I can't talk on the phone for long periods, that going out for dinner or a long car ride could mean I can't do anything for the next few days. What tugs at my heartstrings the most though is how little I am able to do with my children compared to last year. Last year at this time a typical day consisted of getting up at 6am, dropping the kids off at school, working 8 hours, picking the kids up, stopping at the grocery store, going to the Y to work out and let the kids play or swim, coming home and cooking dinner, doing laundry, dishes, etc... Now I am exhausted if I work for 2 hours or put clothes in the washer and forget about carrying baskets. Instead of an hour on the elliptical three times a week, frequent walks with the kids, maybe a night out at karaoke, I strugle to do my physical therapy which consists of sitting and raising my leg 10 times and doing bicep curls with soup cans.
With all of that said, I am thankful that I have a wonderful doctor overseeing my care. I am thankful to have friends, family, and coworkers who have supported me in spirit and strength. I am thankful to my Church community for the meals and the phone calls just to check in. I am thankful to have such a loving and supportive husband to ride this rollercoaster faithfully (though not always joyfully)with me. And most of all kids who keep laughter and love in our home every day. They are content to play board games or watch a show or put on a show for me, this may help their future acting careers:)
So, that is basically how MG affects me. If you know someone with MG or have MG they may share some similarities but none of us is the same. We each face separate challenges, have separate strengths, respond differently to treatment, but we know emotionally how the new normal feels.
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