What’s that disease you have?

What's that disease you have?

SINCE YOU ASKED….MYASTHENIA GRAVIS

It feels like concrete is being poured into my body. The more I try to do, the weaker I am. Sometimes I resemble a rag doll – limp, unable to move. You see me when I am at my best, but even when I am out, I usually say I am propped up. People with MG are affected differently. Some experience mild symptoms, others have life-threatening ones. Different muscles of the body can be involved:  eyelids, vision, neck, mouth, muscles for chewing, swallowing and speaking, shoulders, hands, legs and even breathing.

Since you asked, I have MG #IHaveHeardofMG Click To Tweet

WHOSE NORMAL IS THIS ANYWAY?

Often experts state most people with MG are able to live a “normal or near normal life.” Hmmmm. Maybe this is true for complete couch potatoes! MG is not curable but it is treatable and remission is possible, although usually not permanent or complete. Typicially, the first one to three years are the worst. Both men and women of all ages can be affected.

MG is an autoimmune disease, meaning the body attacks itself with antibodies.They block communication between muscles and the nerves, effectively interrupting the chemical signal. In other words, my muscles and nerves don’t communicate well. My brain thinks I can do something, and actually I can once or twice, but then it gets harder and harder to  move. It isn’t contagious or hereditary. In fact, the cause is unknown. About 20 people per 100,000 are affected.

SQUAT AND HOLD

That’s how I feel with simple tasks like standing or holding something. Literally everything I do requires monumental effort. I may start out walking or going up steps normally, then I run out of neurotransmitter. It’s like having gas in your car.  If you go fast or uphill, you burn up your gas more quickly. Once you are out of gas, you stop. It takes a while to regain strength.  I sometimes have to rest my arms while applying make up or opening the mail. Symptoms and severity can vary from day to day and even from minute to minute. In part it depends on how much I have done, what time I took my medicine and how warm it is. My hands used to cut swiftly through skin, fascia and myometrium, especially when a baby was in distress. Now on a really bad day I can’t cut up my own food. I cannot shake hands more than once or twice which is really awkward. Please no high fives either, but hugs are always welcome.

DRUGS

I take a handful of them and they have a plenty of side effects. Currently, I am weaning off prednisone because it caused steroid induced diabetes (which fortunately will go away).  I also take another powerful drug to suppress my immune system., so don’t come around me if you are sick, and please get a flu shot. I’ll get one too, but it may not work because of the drugs. I take a drug called Mestinon every three and a half hours. I receive an infusion of immune globulin (IVIG) every three weeks at the hospital. IVIG is comprised of antibodies from ten thousand blood donors, so please give blood if you are able. This is the first thing that has helped me significantly. I have also had plasmapharesis, which is similar to dialysis. Another treatment is removal of the thymus gland, which is located between the breast bone and is on top of the heart. I had mine removed robotically.

I DO NOT HURT AND I AM NOT TIRED,  I AM WEAK

“But he said to me, ‘My grace is sufficient for you, my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on  me.'”  2 Corinthians 12:9 (NIV)

Please don’t feel sorry for me. I am truly blessed. I had fifty years of perfect health. I was able to jump on the trampoline, roller blade and play kick ball with my kids, who are now grown. I have a husband who takes really good care of me. My friends, family, church and community have been absolutely amazing. The outpouring of support, cards, messages, and meals have ministered to me beyond measure. I have made a lot of new friends and rekindled relationships with old ones.

COUNT YOUR BLESSINGS

“Giving thanks always for everything to God the Father in the name of our Lord Jesus Christ.” Ephesians 5:20 (HCSB)

Whatever struggle you are going through, this really helps. I sometimes make a list so I can refer back to it on a hard day. I am not superwoman. I get frustrated and occasionally I cry.   Some days are harder than others, but I would suspect you would say the same.

DON’T ENVY ME

If you knew all the ways God has made Himself real to me, you would be so jealous. My journey has been indescribable. Peace and joy are worth more than temporal things like bicycling and working. I hope you have the opportunity to KNOW God in a real way too.

Jeremiah 29:13, “And ye shall seek me, and find me, when ye shall search for me with all your heart.”  (KJV)

18 thoughts on “What’s that disease you have?

  1. OMG! You described this illness to a tee! I was diagnosed 3 years ago, even though I had symptoms a long time before that and it is so hard to explain this disease to people.

  2. Vickie, what a blessing this blog is to everyone who reads it! Yes, God is so good and I can only imagine what plans He has for you. Thanks for sharing. Praying…

  3. Vickie,
    I just binge-read all your blog posts. I guess there are worse things to obsess over, right?! I hope you never, ever get tired of hearing that you are an inspiration! Your journey is amazing. Thank you for blessing us with your gift: “the pen of a ready writer”. Psalm 45:1 I look forward to reading more – and my prayers are with you.

  4. I hear your pain and frustration, I also hear God is using the evil disease for good and you are giving Him the glory. You are a inspiration to me and many others. Thank you.

  5. Consider yourself hugged!
    Thank you for sharing! God has given you the opportunity to be an instrument for Him.
    Love you! Always in my thoughts and prayers!

  6. I have been told that I have fibromyalgia…first it was CFS. I have been sick for over 2 months and I know it is something more. I had a horrible reaction to Prednisone, which I finished on January 4th. Your symptoms sound very much like what I’m experiencing, however, I am tired…very tired. Will a regular doctor be able to test for this, or is this similar to Lymes where you need a specialty doctor?

    1. Most are diagnosed by a neurologist. The characteristic feature of MG is fatigable weakness. Usually the eyes are affected first. Other muscles affected: shoulders, legs, mouth, neck and diaphragm. Hope you get answers soon

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