A Double Vision Diversion

Don pressed the brew tab on our coffee pot as he ran out the door to work. A fresh cup was ready for me in minutes. I put on a light weight jacket, filled a cup, and sat on our screened in porch.

I soaked in the view, including blue skies, scurrying squirrels, falling leaves, and towering trees - like the talking kind in Narnia. At least that's what I like to believe. 

The view warmed my soul as the caffeine awakened my senses. By the time I dressed and drove to teach a morning voice lesson, I was crafting a song in my head - a jazzy one that's not quite finished. 
But I was thankful. Thankful that I even felt thankful.

I battle double vision more than I want to acknowledge. It's not that what I see is always split in two, although that happens on and off through out my day. But even when an image is single, my muscles are working more than they should, causing a constant feeling of pressure above and between my eyes. 

After a neuro-ophthalmology appointment last week and my stubborn refusal to limit computer work after, pain forced me to refrain from lap top use by the weekend. I called my mom and asked her to bring her dog over so I could get a Lily fix. But mom was busy helping dad with his his campaign, a sensible thing to do.




Without my favorite dog to comfort me, I made a phone call. And caught a friend in tears, fighting through her own place of overwhelm. We didn't solve much but found comfort in connection. 

And now that almost a week has passed with little time at my machine, I've rested, watched crime TV, and have just lived life without the intense need to accomplish. 

I'll never get a book written that way. So I hope prism lenses change things soon. (That appointment is scheduled for mid-October.) But this pause - this divine interruption - gave me the opportunity to enjoy what is. 

The talking, towering trees. The rustling, bustling squirrels. 


Bonnie's sixtieth birthday party in her wheelchair with our Bible study girls and more.


An unplanned visit from Courtney and Sam. 


An hour playing music at the hospice facility where my friend Debi died. 



Interaction with my voice and piano students that makes me treasure what I do, like an impromptu lunch with Sue and Gordon today. 

I've spent my life feeling like there's more for me to do. Something important yet to accomplish. And mitochondrial disease has slowed progress time and time again. I faced another road bump just last week.

So I just lived. Thankful I can see. With a touch of sad that chocolate, peanut butter, strawberries, and God's mercy soothed. 

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Mitochondrial Disease and Me

Mitochondrial Disease Awareness Ribbon Coffee Mug on Amazon
There was a day I didn't even own a coffee pot. A time I didn't care about coffee. And many years in which I never thought twice about the need for a caffeine rush.

That all changed in my early thirties when fatigue clouded my mornings. By the time my boys attended a school across town, requiring a daily commute, I often  slept in my car before driving home. For hours. With a stored pillow and blanket.

Often embarrassed by my need for sleep, I was relieved to learn I had high levels of the Epstein Barr Virus in my system. I remember thinking, "I'm not just depressed because my husband died young. I'm a tired person."

So we plugged along. Until my right arm started hurting a few years later, hindering the computer work I did for an insurance company.

I drove a hand specialists nuts. He couldn't find a viable reason for my debilitating pain. So I traveled to the Mayo Clinic since my hands and wrists are quite instrumental in my musical life. Doctors there noted Peripheral Neuropathy and prescribed Amitriptyline. It helped.

 


Fast forward three or four more years, and my leg issues began with Peripheral Neuropathy that startled me on a field trip and created a Wheelchair Detour. Within a few months, however, I walked through a drug store holding a small cart thinking, "This is why old people use walkers." Unstable legs moved in spastic strides.


It took another three or four years, but my son finally showed enough joint instability that a doctor sent us both for muscle biopsies and eventual spinal taps. Pages of medical reports indicated Mitochondrial Dysfunction.



Sometimes I wonder what I would have accomplished in life if I hadn't had to spend so much precious energy chasing answers that are still somewhat unclear.    




Mitochondria power our cells. Every cell in every organ system. They provide the electrical energy (so to speak) that makes your body move, digest food, and think clearly. Everything you do requires energy from your mitochondria. Everything.

People with mitochondrial dysfunction (or disease) live in bodies that don't power well. We're short circuited; a 30 watt light bulb shining in place of a 75 watt design. We have a smaller amount of energy to do the same amount of living as everyone else. And when we push too hard, for too long, we brown out. We crash. We sleep for hours, or a day, and sometimes require IV fluids to revamp the circuitry.

It's like blowing a fuse. Not the angry kind. The kind where your hair dryer and curling iron run at the same time as too many appliances in your kitchen and every thing shuts off at once.

Symptoms vary from person to person, creating much confusion in the medical community. Sam (my youngest) and I have same the biochemical markers. But he just ran a 10K in 40: 13. No joke.

I can't walk up a hill without weakness affecting my stride.

Yes, he's younger. Much younger. And much stronger than I ever was at his age. But the point is, different people suffer a different severity levels, very much like the stages of cancer.

But I'll never forget a wise PA who worked in a pain clinic I visited early on. After listening to my tale at length, she looked at me square on and said, "It's like you woke one day and your face was green and no one can tell you why. If you had cancer, people would rally. They understand cancer. But they don't know what to do with what even we don't understand. You're walking around with a green face."


A diagnosis helps. I don't feel quite so green.

But doctors still debate the science. What one mitochondrial disease specialists may diagnose, another sometimes questions. With the few professionals in our field debating the science, a local pediatrician has little hope of understanding the best treatment options for our here and now.

So we raise awareness. We write about the disease. We tell our stories in hopes of making it a little easier for the undiagnosed, the tired ones, and the moms holding their precious babies in need of a cure.


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Three Days in Philly

I downed one last sip, then set my travel mug back in the cup holder by my seat in my van. I needed all the caffeine I could swallow.

Soon, I met up with my mom at the wheelchair assistance counter in the Atlanta airport, Red Rollator Walker in tow.  Mom has been battling severe plantar fasciitis and borrowed a friend's orthopedic boot to manage our trip. So with my energy issues and her new limp, we  rode in style to our gate.

We arrived at my grandparent's two room apartment on the outskirts of Philadelphia, PA by mid-afternoon. They've lived in Riddle Village for almost twenty years. At 94 years of age, Grandma's health and Grandpa's Alzheimer's forced them to move to assisted living last winter. Grandpa wandered off one time last spring, so he now wears a bracelet that activates an alarm system when he leaves their floor.

So when we walked in the door and grandma said, "We'd like to go out for dinner tonight!" mom and I knew our adventure had taken a new twist. It became even more clear when Grandpa perused a menu and asked the waiter, "What's a French Fry?"

While I'd lugged my lap top through the airport hoping to get some writing done while we were away, I soon realized we'd entered an all consuming vortex. Grandpa needed new shoes and clothes. Badly. The soles on his favorite pair were falling off. Grandma was a bit stir crazy, her life limited by grandpa's illness and bracelet. Normally excited to take us to the fancy restaurant in their building, grandma just wanted to be out. Away. Free from the limits that bombard their aging lives.

So we maneuvered for three days with mom in a boot, me on my red walker; grandma, quite slow on her grey walker; and grandpa experiencing the world through the haze called Alzheimer's.

And it was crazy good.

For one, I haven't flown in three years. Traveling when chronically ill poses daunting challenges and forces one to face their limitations head on. I can maneuver around them when home. But when I navigate long hallways for days (even beautiful hallways in a retirement home), my legs tire and require assistance.



Second, while I long to make my statement in this world just like many others, putting my work aside to wander through life with the hobbling ones enriched me more than any words I can offer. News web sites, FB, twitter, and more regale us with stories, both humorous and tragic and all in between. The onslaught of information overwhelms me at times yet beckons my attention all the same.

Leaving it behind to just live with others in need enriched me in a way that reminds me to leave it behind more often. There are lives, real lives to be touched. Grandparents who need a lift. Grandpas who need new shoes - even when they argue the old ones shouldn't be thrown away because they're perfect for going out to the barn and feeding the chickens he hasn't fed since childhood.












By overcoming the insecurities that have plagued me when leaning on a walker or cane, I was able to make a difference for mom, my grandparents, and me. And I hope to travel that way again soon.



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Medical Musings - The Donjoy SERF Strap


While I enjoy writing about how I see Jesus in my day to day life, it dawned on me recently that I should to share more of the medical aspects of my journey. Surviving chronic illness requires trial and error with medicines, supplements, and medical equipment. What works for me may not work for you.

But you never know.

So I'll begin posting weekly medical tips today as I recover from a weekend trip to Philly to see my grandparents.

I lost normal use of my legs in December of 2005. It started with nerve pain but soon progressed to unpredictable spasticity. Some days my legs moved with ease. Others, they felt stiff and unsteady.

Bottom line, mobility concerns have been an issue for almost ten years now. While an L-5/S-1 back fusion (in June '13) eased the slap foot that exasperated the issues, my right leg is still weaker than my left and a source of daily struggle.

I've used a cane off and on and even succumbed to a Rollator walker for long distance walking. But a new orthopedic doctor recommended the Donjoy SERF Strap last spring and it has made a huge difference.

To clarify the physical reason, let me add that there's definitive muscle/nerve damage in my right leg, noted by a recent EMG. So discerning whether my ankle, knee, or hip needs the most attention remains difficult. But when recent hip pain flared, sending me back to orthopedics, the new doctor felt the ligaments in my hip were somewhat unstable and thus recommended the SERF strap.

And I love it. It's like wearing a cane instead of leaning on one.

DonJoy SERF Strap







Draw backs: It's rather tight around the bottom part my knee to the point of discomfort after hours of wear. The strap moves out of place if it's not tight enough around my waist. And some days I'm self conscious about the added bulk around my belly. (Simple vanity!)

Benefits: I can walk at least twice the distance on an average day with it on than I can without it. Hip pain is less. The ankle more stable. And I walk straight up, not tilted to one side like I was when I used a cane. The strap is designed to rotate your foot out for maximum hip stability. Some days I wrap it the way it's designed. Others I keep my foot more forward to allow different muscles to continue working. And it still seems affective.

And in case you're shopping for doctors, Dr. Morrison at Peachtree Neurosurgery performed my back fusion. Dr. Shu with Kaiser Permanente Orthopeadics suggested the SERF strap. And I highly recommend both specialists.

 Now for some closing inspiration:


Happy Monday!



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A Tale of Three Skydivers

As I sipped coffee this morning, Don and I mused over the weekend - the skydiving weekend.

While we'd discussed it in length already, I still wasn't prepared when he said, "You know I watched that guy fall, right?"

The enormity of it all sank in again. For not only did my boys and I go skydiving this weekend, we jumped out of an airplane the day after two divers collided in mid-air while we waited in the hanger for a flight the day before.



The story is all over the news: Beloved Father Killed In Skydiving Accident (11 Alive) &
Marietta Man Killed in skydiving incident in Polk County (AJC)

 While the young man's life ended last Saturday, our intersection with his began last May.

Sam, Courtney, and Nathan stayed in Atlanta this summer. The first in many. Since we haven't taken a trip without extended family in years, we decided to be intentional about making memories this summer, even if just close to home. 

Nathan's first suggestion? Skydiving.



Having just undergone my third spinal tap at the end of May, something in me snapped. "Let's do it," I blurted, overly confident. Why not? What did I have to lose? My body continues to betray me little by little. Why not have some fun in the mean time.

An episode of severe hip pain left me doubting my resolve just two weeks ago, however, and I planned to bow out with grace. As we parted ways after a recent meal, I asked, "Are you ready for me to make skydiving reservations for Labor Day weekend?"

Affirmative answers flew my way.

"OK then," I continued, "I'll figure it out tomorrow."

"Are you going to do it, mom?" Nathan asked.

"No," I sighed, "I'm concerned about..."

With that, animated explanations interrupted my flow. Nathan and Sam almost spoke in unison, with hand motions. Amazed by their adamance, I drifted back in time to the day they pleaded with me to go down the Cliffhangar with them at White Water.  A different kind of bonding occurred between this formerly widowed mom and her little men as we climbed the nine story platform. And Sam still remembers (and laughs at) my hesitance to take the plunge. But I did. And it mattered.


I turned to Don as we drove home and said, "I have to do this. I have to skydive with my boys. I don't know if they need it or if they know that I need it. Maybe it's a little of both. But I have to do this."

By mid-morning the next day, I'd made reservations through groupon.com for Skydive the Farm. And the wait began. I wasn't nervous or scared, rather divinely calm.

We arrived at 2pm last Saturday, expecting to take flight. After signing our lives away we sat in a large hangar where I heard a woman talk on the phone as if someone had been hurt. Within the hour, all flights were cancelled due to weather concerns. But after we rescheduled and drove off, Don called me from his car to say that while we were in the office, he overheard a conversation implying two jumpers had been seriously injured.

We passed three emergency vehicles a quarter mile down the road. A blue parachute lay just beyond the trucks, confirming Don's suspicion. An internet search proved futile. So we arrived Sunday at noon, not knowing exactly what had happened.




So I asked. Right after we checked in, I asked. The women behind the counter first informed me that a diver had undergone back surgery and would be OK. His fingers and toes still worked. But I knew two divers were involved. So I replied, "And the other?"

"He didn't make it."

Her calm demeanor defied the heartache inside. And it soon became clear that the entire staff was working to hold it together; to go on with business as usual.

Don wasn't with us the second go round so I called him, "One of those guys died yesterday."

"Does that make you nervous?" he asked.

"I don't know. Should it?"

"You'll be fine," he said with a resolve that settled lingering concern.

So when they called out our names not long after, I geared up with my boys.



There are so many cool details, I could write three blogs about the experience. For now, I'll just say I hope I get to do it again some day. The view was obviously spectacular. The best vantage point I've ever enjoyed. My instructor, Chuck Staten, and videographer, Mike Davidek, did a great job keeping me calm as the plane took off - with me seated right by the open door which was not closed until we were about a mile in the air.



The world stretched out far and wide, providing a perspective unlike any other. And I knew God was after me to trust Him in new ways. To rest in His promises just like I hung in that harness. If Chuck could get me to the ground, couldn't God safely walk me through however many days and nights are left for me on earth?



I'm writing a book I've talked about writing for years. I started it this summer. Will finish by the end of the year. It's a little scary, like jumping out of a plane. What if no one wants to read it? What if no one likes it? What if I spend all this time coaxing words from my soul to no avail? What if I jump out of a plane, collide with another, and my parachute doesn't open?


Jumping the very day Chuck and his cohorts grieved the loss of their friend reminded me that there is always risk when you jump. Always. But man I'm glad I got pushed out of that plane. Floating above the clouds, and even right through one, makes breathing a little easier on earth.

What I didn't understand until this morning was that Don actually saw one of the divers fall from the sky Saturday afternoon. He witnessed the event. But never blinked an eye at me doing the same.

I've spent a few years battling emotions that have made me want to shrink into my skin. Unable to open. Afraid of more hurt.

But my boys and Don said, "Jump." God says, "Trust." And I'm the better for having taken the plunge.

(One request... if you enjoy a post, will you comment and share it with others? I need some marketing help. And you're the best place to start.) 

And I almost forgot... here's the video link in case you want a first hand taste of sky diving. My instructor, Chuck, owns his own camera that allowed for a much longer video of the experience. 



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