For those of you who don’t know, I have Limb Girdle Bethlem Myopathy Muscular Dystrophy. My mother, sister, aunt, great aunt, and three cousins also have it. My grandmother died from it. We believe her mother and sister also died from it, but it was long before testing was available to them.
My DNA test also has the variant of uncertain significance. My new neurologist didn’t think I had MD because of some random reflex tests and the variant of uncertain significance—despite my family history, their DNA tests, my DNA test, my former neurologist’s diagnosis, and my symptoms which have progressed. I can’t do near what I used to be able to do, I have severe pain and fatigue, the same symptoms as all my other family members who received the same diagnosis, and I use a power chair most everywhere I go.
After running my CK count and other bloodwork and doing 4 MRI’s, my new neurologist is back-tracking what she said and is now saying that she thinks I might actually have MD. Now she wants to run heart tests, an EMG, and possibly a muscle biopsy. Doctors don’t always know best. My mom knows more about our disease than most doctors we’ve seen. The doctors often call it MS instead of MD even in conversation. It’s infuriating what all they put you through and their lack of understanding about the disease. There doesn’t seem to be any real specialists out there.
It’s a long and rough road to get the “paperwork” to “prove” that you indeed have it. And then there isn’t a cure which is rough to say the least.
Our God is stronger, though. He is our strength when we are weak. Having MD, I understand a whole new level of weakness. One day, there will be healing. God wins.
In the here and now, we live each day at a time and let God teach us, use us to encourage others, and help us to understand the pain of this world so that we can better understand how great God’s love really is—to reach down and offer us a way to be saved from this world of sin and pain. Yes, one day it will be worth it all just to be with Him. What a small cross we have to carry compared to the pain he has suffered for us. It encourages me to know He loves us that much and will heal us one day. It makes nights like tonight, when I cannot sleep because of the severity of my pain, bearable. He really is with us through it all.
Praise be to God! If you don’t know Him as your personal Lord and Savior, I have great news!!!
He is the cure!!
Here I am with my husband at one of my favorite places. It just reminds me that sometimes we have to 'zoom out' to see the bigger picture to appreciate the beauty around us. Sometimes, we have to look beyond 'the chair' (the first thing many people notice) and see the love that God gave to my husband and me. He is such a blessing. Here's a 'zoomed out' picture of this beautiful place to show you what I mean. God sees so much more than we can.
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