What's Up with Mito?

I sat in a chair by the fire place at Bible study this morning. Coffee cups and plates covered laps and table tops. A question pierced through the chatter and caught me off guard, “How are you doing today, Susan?”

My first thought? I wonder if she saw.

For some reason when I got out of my car and walked the short distance to Paula’s back door, unsteady legs threw my gait, forcing me to grab the stair rail. I’d worn my tennis shoes, trying out inserts for my degenerative, left tendon. But for some reason, they threw everything off.

By the time I got inside I felt more in control. But Angela’s question made me wonder, “Do I look off? Should I confess to the walking issues? Or smile and say, ‘I’m doing well, thanks!’”

I opted for my new line, “My heart’s good. My body’s weird. But I’m okay.”

Just last week I engaged in an email exchange with my new podiatrist that didn’t end well. Frustrated at my continued quest to fully understand what's going on in my foot, he wrote, "Nothing SURGICAL is recommended" twice, with these suggestions:

1) Get pain medicine from PCP (Like the ones that gave me reflux to the point I aspirated in the middle of the night and was in so much pain Don called 911?)

2) Wear shoes made by ECCO, Merrell, Anhu, Mephisto, Birkenstocks, Clarks, Easy Spirit, Dansko, MTB, ROCS, Asics, and Ryka (If I start talking about me and shoe shopping this will go on forever.)

3) Consider physical therapy (Been there. Done that. Too many times. Makes me worse.)

4) Get a second opinion from someone else (Probably time.)

It’s not that I’m anxious for surgery. Really, I’m not. I’m just feeling unheard and brushed off when normal mobility is at stake.

But since I’ve been at this for over ten years now, the dismissal doesn’t unnerve me like it used to. Meaning, I haven't shed one tear.

So, why share all of that?

To illustrate the madness of dealing with just one issue relating to mitochondrial dysfunction. And there are many.

So, in honor of mitochondrial disease awareness week, I'm taking the easy way out and quoting from The Foundation for Mitochondrial Disease website:

"Mitochondrial disease or dysfunction is an energy production problem. Almost all cells in the body have mitochondria, which are tiny 'power plants' that produce a body’s essential energy.

Mitochondrial disease means the power plants in cells don’t function properly. When that happens, some functions in the body don’t work normally. It’s as if the body has a power failure: there is a gradation of effects, like a ‘brown out’ or a ‘black out’.

Scientifically, it is actually a category or group of diseases. That’s why mitochondrial disease takes many different forms and no two people may look alike.

It can look like any number of better known diseases: Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), muscular dystrophy, and chronic fatigue syndrome."

Living with this disease has opened my eyes to the underworld of chronic illness and the families that hang tough. There are many. All around. They inspire me, laugh with me, and remind me that I'm not alone. 

The financial stress, medical mayhem, and just day to day living grow wearisome. But I believe with all my heart that, "Our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (1 Cor. 4: 17 NIV).

In closing, if there's any chance you're in need of a one-of-a-kind, super cool t-shirt designed with my first husband's artwork, check out the link below. All proceeds go to The Foundation for Mitochondrial Medicine, which seeks to fund and find a cure for mito.

Looking for a Cure

All photos courtesy of pixabay.com