Thank you for journeying with me. Together, we’ve been through a rare spine condition, migraines, Philadelphia doctors, New York doctors, praying for hours in MRI machines, and, finally, waiting in Cleveland to receive the news that I have muscular dystrophy. There won’t be a surgery or a therapy to fix this, in fact, there is no cure.
Limb-Girdle Muscular Dystrophy is a genetically inherited progressive muscle weakening disease, which affects the hips and shoulders (girdle) and the upper arm and legs (limbs). It can also weaken the heart and/or cause abnormal rhythms. (Yes, I am going to see a cardiologist)
This is from the MD Association website on Limb-Girdle Muscular Dystrophy (LGMD):
LGMD can begin in childhood, adolescence, young adulthood or even later. Some forms of the disorder progress to loss of walking ability within a few years and cause serious disability, while others progress very slowly over many years and cause minimal disability. At this time, progression in each type of LGMD can’t be predicted with certainty, although knowing the underlying genetic mutation can be helpful.
I have learned that other people in my family had been diagnosed with this disease previous to their passing. I was accepted into a research program at Emory University in Atlanta, Georgia for genetic testing to determine the genetic mutation that is messing with our muscles! I received the kit in the mail yesterday. Now I just gotta get spittin’ – a whole 5 ml…gross!
Each day I experience pain, weakness and fatigue to varying degrees. I don’t know if I’ll be needing a wheelchair next year or next month. My heart could give out next week. I move slowly and I need to rest a lot. Can’t take the stairs too much anymore, but I still take steps. Grace steps. Every time I put one foot in front of the other, it’s because of His grace. Each time I get to laugh with my kids. Feel the sun on my face. Share the love of Jesus. Read a good book. Listen to beautiful music. Eat…everything.
But he said to me, “My grace is sufficient for you, for 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
Let’s take some grace steps together. Thanks for reading.
My new website address is gracesteps.co