Living with Myasthenia Gravis...

Now I didn't title this post "Coping with Myasthenia Graivs" or "Dealing with Myasthenia Gravis". I titled it "LIVING with Myasthenia Gravis" for a reason. This is an illness that I have and I live with everyday. I was diagnosed shortly after Hunter was born.

Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often, but not always, involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected. (Also, they found in a handful of people, the cardiac muscle can be affected. I'm in that handful.)

Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction - the place where nerve cells connect with the muscles they control. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. Acetylcholine travels through the neuromuscular junction and binds to acetylcholine receptors which are activated and generate a muscle contraction.

In myasthenia gravis, antibodies block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction which prevents the muscle contraction from occurring. Individuals with seronegative myasthenia gravis have no antibodies at all to receptors for acetylcholine and muscle-specific kinase, which is involved in cell signaling and the formation of the neuromuscular junction. These antibodies are produced by the body's own immune system. Thus, myasthenia gravis is an autoimmune disease because the immune system - which normally protects the body from foreign organisms - mistakenly attacks itself.

This is just fancy talk for "I get really weak at times." lol. My symptoms started during labor giving birth to Hunter. It took all I had to deliver him. They handed him to me to hold afterwards and I couldn't. I was just too weak. I didn't think anything of it at the time. When he was six weeks old, I had to take him to his six week appt. I was so weak that I could barely carry his carrier. His doctor told me to get a check up with my doctor. I did. They sent me to a neurologist. I couldn't brush my teeth without taking a break, I couldn't go up stairs, I couldn't wash my hair without taking a break, etc. They did some testing and found that I have Myasthenia Gravis. It has been a difficult road. I have had surgery to remove my thymus glad which sits atop your heart. I did very well after this for about 2 years. Then I declined again and have been ever since. My Myasthenia Gravis is what you call unstable. (Mind you, I have a lot of stable times). I have had plasmapheresis treatments. This is where they put a port in your chest and hook you up to a machine, not unlike dialysis, and take out your blood and remove the antibodies and then put it back in. The last treatment I had did not go so well for me. I had a very bad reaction and lost my sight for a while. BUT, I have many good days as you all know from reading my blog. I take an immunosuppressive to reduce the antibodies that attack my cardiac muscle and the rest of my muscles for that matter. I also take medicine for the neuromuscular junction to fire. With these medicines, I have been able to LIVE with Myasthenia Gravis.

I take it as easy as I can most days. I have a lot of chores that need to be done for my family and I strive to get those done. I want to enjoy my life and not just "rest" all day in a chair and watch life go by. That's not living to me. I hang out with friends, go to cookouts, go to fairs, do chores, cook, vacation, etc. But, I do these things in stride. I am in pain every day of my life. You just get used to it and when it's unbearable, I rest in my beautiful rocking chair. :) I can't dwell on the pain or weakness. That's not what my life is about. My life is about loving the Lord and loving people. That's hard to do if you are always thinking about your pain and weakness. :) God has been so good to me that I have been blessed with perseverance. I am a strong woman when it comes to hard times. God has shaped me that way. I thank Him for that. This is His will for me. Who am I to complain?