Mitochondrial Awareness Week (part 2)

Mitochondrial Disease is often referred to as an invisible disease. We "the sick ones" often look fine on the outside while our bodies betray us in various ways inside.

My friend Lauri raced her kids to the ER on a regular basis until after their diagnosis. Both children had life threatening illnesses around six years of age. The oldest was airlifted to Emory and put in an induced coma for several days. The youngest suffered encephalitis and wasn't expected to live.

Their bodies didn't produce enough energy to battle a basic ear infection. A minor illness could erupt into an emergent situation in a matter of hours. Now after a muscle biopsy and years on the "mito cocktail", a combination of energy producing supplements, they're thriving, growing, and stretching boundaries little by little.

Tina, on the other hand, has three children who presented in very different ways. The oldest exhibited weak muscles from birth, though a diagnosis took years. Looking back Tina remembers, "He conquered all the expected milestones, but since we were new parents, we didn't understand that he wasn't doing them as well as he should have." In time, the gap became obvious. Now in middle school, he faces continued muscle weakness and fatigue but excels in academics.

Her second child, however, is a thriving lacrosse player who battles extreme concentration issues in the classroom - perhaps even undiagnosed mini-seizures that couldn't be treated with normal meds due to side effects mito patients can't tolerate. And her daughter? She's struggling to eat, to gain weight. Her gastro system not up to par.

In many ways I feel blessed with my joint issues compared to their stories. But I struggled to pump the pedal while playing the piano yesterday; my ankles tiring easily from the up and down motion.
My arms felt heavy and flu like by the time I taught for two hours, the fatigue heightened from weekend activity. My left ankle reacted so poorly that in the end that I had no choice but to rest and allow heat to relax the tight muscles. I see an orthopedic doctor Friday and am hoping the tendon isn't in need of surgical repair. The pain concerns me. But surgery would bring a host of new issues.

When one area of our bodies requires more energy to heal, other parts suffer. I have two potential surgeries looming. Both would potentially solve current problems. But in this body, there's no telling what other issues could arise.

So I pray. I rest. I use the microwavable heating pad my mother gave me. AND I've spent hours in physical therapy this summer and early fall trying to strengthen what I can. I highly recommend Adam and Dustin at Physiotherapy in Kennesaw, GA. I've worked with Adam, but the entire team has made the experience fun, relaxed, and well worth my time.

Adam wasn't intimated by mito and has pushed me more than I expected. I'm grateful for the push. I think he's the reason I could climb more stairs than normal last weekend. But there's still a delicate dance to learn. Some days I get it right and others I end in pain.

But I wake to new mercies every day. I rest and start again, shut down and reboot, holding firm to the promise, " For what is seen is temporary, but what is unseen is eternal." (2 Cor. 4: 18)

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