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When I prepped my coffee maker for this morning’s brew, I added two extra cups. Worn thin, I thought I might wake better knowing added fuel awaited. A handful of Advil went down with my first sips. So, I plan to burst forth from my painful haze and embark on a new day soon.

Words failed me last week. 

Between buying a new (used) car, teaching, and learning that I have a stress fracture in the second metatarsal of my left foot, I went under. Definitive x-ray proof validated my concerns. But, compensating for one side creates pain in the other. A circular problem, indeed.

Fortunately, I see a new hip surgeon tomorrow and hope for a better plan of care for the torn tendon in my right hip. I debated going. Even after strong encouragement. But a good encounter with the podiatrist gave me what I needed to keep from cancelling.

“I don’t know how someone with mitochondrial issues heals from a stress fracture,” Mr. Podiatrist confessed. “They don’t cover it in med school. I don’t know why... but they don’t.”

Stunned, I simply said, “Thanks for acknowledging that. For using the mito word.”

Since few doctors ever address the underlying issue that ties all of my medical stuff together, his words parted my foggy haze. Other docs may think it. But they don’t often say it out loud.

So, when I shared the rest of my recent doctor struggle and Mr. Podiatrist highly recommended I go for the second opinion, I left ready to face a new day. There’s no guarantee I won’t be dismissed tomorrow. But I now have the courage to try again.

And sometimes that’s all it takes to fill dark insides with vibrant color.

Weeks before, I told Don, “I feel off. There’s no sparkle in my soul. It’s like I feel brown.”

(Interpret that another way if you like. But I stuck with brown.)

When I wear an ankle brace on my left foot and a knee brace on my right leg, and use a walker or cane when out, I crawl into bed without crazy pain. And that’s a good thing. 

If I think too far ahead, the color might fade. So, I won't. Today, I'll celebrate a few things:

1) When I put an SOS out about the shin dig I hosted last night, my first elementary school friend offered to help. Stephanie drove over an hour. Arrived two hours early. And helped me get everything ready. 

I still can't thank her enough!

2) When numbers were low and another person cancelled, I reached out in different ways to a number of random people. All of my recent high school voice students rallied in less than 24 hours and showed up ready to sing. 

I'm still in awe that they carved out a last minute slot for me. 

3) Between Stephanie, my voice students, Hazel, Penny, Ute, Alex, Jimmie, Tina, and Julia, we made the video. My drive ways wasn't filled to overflowing, but man, I sure appreciate this crew. 

They learned motions and words in short time. And sang with enthusiasm. What more could I ask. 

Again, I'm filled with thanks.

Will we change the world or medical school text books? I don't know. But if we don't keep trying, people like me will continue to receive care from hesitant and overworked medical professionals.

So, here's to mitochondrial disease awareness week. Thank you for your t-shirt orders! Your prayers. Your donations. And support. 

I'm truly grateful. 

Most photos courtesy of pixabay.com

Concrete Steps

I woke in need of coffee on the third floor of an apartment building Sunday morning. My son had left for church so I downloaded the Door Dash app and eventually figured out how to place an order. Forty minutes later, a young mom delivered a two-thirds filled small cup of coffee... when I was certain I’d ordered an extra-large.

Disheartened, I savored each sip. Then, texted my oldest and asked him to pick up more on his way home. Guaranteed it was on the way, I laid back down in anticipation.

When a car door slammed outside my window, I sat up and watched Nathan exit the car. 

When he paused empty-handed, we both realized he forgot to stop.
The morning mishaps would’ve been avoided if I’d remembered to bring the old coffee pot my mom found in her basement. But no, I left it in my living room when I packed for two nights away. And with a probable stress fracture forming in my left foot due to the recent changes in my gait, I had to limit my time on the concrete apartment steps.

Thankfully, I’m home, only steps from my coffee pot, and all is well. 

But I once climbed Stone Mountain for the Easter sunrise service with my little boys in tow. Sam was not happy even in his new light up shoes. But I felt extra triumphant as we sang Christ the Lord is Risen Today with a view from high above—in matching train sweat shirts.

Now, I have to weigh how and when to climb concrete steps to visit my son. So, with mito awareness week fast approaching, let’s talk mitochondrial disease. 

As stated on the Mito Action web site, “Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure.  It is estimated that 1 in 4,000 people has Mito. It’s progressive and there is no cure.”

Further down on the same web page, they answer this question well: 

What are the Challenges of Living with Mitochondrial Disease?

Affects multiple organs, affects multiple family members, affects multiple generations.
Lack of awareness and understanding of the disease.
Families are continuously forced to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
Mitochondrial disease is often an "invisible disease."
Good day—Patients look fine and healthy. They have more energy and appear rested.
Bad day—Patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days" often lead to decompensation and patients have difficulty returning to baseline.
Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate recognition, medical care, insurance coverage, healthcare supports, and disability services.
Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.
An individual can become symptomatic at any time in life despite the fact that it is inherited.
It is difficult to diagnose.

[Read more at http://www.mitoaction.org/mito-faq]

While I’ve read that list in past years, I found renewed comfort in it today. I often feel misunderstood, sidelined, and overwhelmed by medical decisions and the fight for careespecially when new symptoms creep in—like last week.

One night just before bed, my vision split in two with my prism glasses on. Ever since, I’ve struggled to maintain focus. Questions haunt me: What did I do? Is it something I ate? Too much gluten? Why now? Will they ever stop getting worse?

An eye patch helps and bracing my left ankle today calmed the foot pain. But with my right hip tendon also in crisis, what’s a girl to do? 

Rest. Pray. Exist. Sing. Eat. Nap. Write. Nap. Teach. Pray. And pray more.

And as mito awareness week approaches, ask two things:

1) Will you consider purchasing a t-shirt to spread awareness in your circle of influence? The one with giraffes? You can find it here: Buy $15 Giraffe T-shirt Here

2) Will you consider donating to or buying a ticket to attend the Hope Flies Catch the Cure event? Sep. 21@ 7 pm @ The Fairmont. The Foundation for Mitochondrial Medicine partners with those who are working to find a cure. 

Trust me, I'm not comfortable asking for money because there are so many people in need and so many good causes to join. But since this is where I've landed in life, I'll push through my discomfort and hope that selling a few t-shirts and sharing about Hope Flies may somehow serve as concrete steps forward in the mito world. 

For now, this is the song I can't get enough of as I drive around town...

Most photos courtesy of pixabay.com

Superimposing His Truth

A cool breeze surprised me this morning. So, I sipped pumpkin-spiced coffee on our screened in porch with the faint scent of fall. Wrapped in the beginnings of a new season, I relished that all that is will soon morph into all that will be. Because change is coming. Ready or not.

Some changes excite me. Others overwhelm. But juggling both emotions seems to be the way of life. For all of us. 

The surgery scheduler finally offered me a surgery date in mid-October which I turned down. If I have to wait that long, I decided not to miss out on a few commitments I made toward the end of that month. In the meantime, I spoke to someone in administration who suggested I seek a second opinion. 

That appointment is a month away. 

So, I keep pondering one of my favorite stories from the book of 2 Kings:

“When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. ‘Oh no, my lord! What shall we do?’ the servant asked.

‘Don’t be afraid,’ the prophet answered. ‘Those who are with us are more than those who are with them.’

And Elisha prayed, ‘Open his eyes, Lord, so that he may see.’ Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha” (2 Kings 6: 15 – 17 NIV).

Wouldn’t it be cool to live with the confidence that those who are for us are more than those who are against us? Might the greatest miracle be to live with our eyes open to that reality?

Maybe that’s why Paul stated, “We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ” (2 Corinthians 10: 5 NIV). 

But just because he said it doesn't mean I know don’t how to do it. To take every thought captive. I tend to glance at that verse and move on, accepting it’s too much. A lofty demand, impossible to achieve. 

But it’s there. In black and white. Take every thought captive. Lasso the bad ones and replace them with right ones like, “Those who are for us are more than those with them.”

In a world where sirens blare, hurricanes blow, cars wreck, and cancer cells overtake good ones, the challenge to believe requires a mental sharpness I struggle to maintain. What about you? 

Our walk with God isn’t just about church on Sunday or a quiet time in the morning or even a loud one at night. It’s about, dwelling in the shelter of the Most High and resting in the shadow of the Almighty (Psalm 91: 1 NIV). And in my experience, there’s no way to do that without wrestling with and overturning the doubtful, fearful, and unhealthy dialogues that run a muck in our brains.

I have made my concerns known to the medical people I interface with in several ways. Will I hear back? Will they change their position? I have no idea.

But while I wait for healing, I'm determined to fight against the invisible feeling that often accompanies no answer, and makes me sink into my skin and fade into crime TV reruns.

I want to believe right now, even on painful days, that, "If I make the Most High my dwelling-- even the Lord who is my refuge-- then no evil will befall me, no disaster will come near my tent. For he will command his angels concerning me to guard me all of my ways; they will lift me up in their hands, so that I will not strike my foot against a stone" (Psalm 91: 9 - 12 NIV).

And that's coming from someone who lost her first husband to a brain tumor over 20 years ago. Did evil befall me then? It sure seems like disaster entered my tent.

But right in the midst of it all, the power of those words were superimposed on the struggles we faced, leaving me assured his angels still guard all my days.  

And maybe that's the best way to wrap this up. I want to always see His hope, His truth, His power superimposed on whatever I face, like the fourth dimension in my 3-D world. 

Oh Heavenly Father, lay your truth over us like a soft, heavy blanket that covers us on the coldest night. Keep us buried in your truth, held fast against the dark, cold winter that is this life. 

All photos courtesy of pixabay.com
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