To Fuse, or Not to Fuse: that's been my question

By mid-summer this year, my right leg grew weaker than specialists understood and I was encouraged to fight for its survival. So I got referrals and made appointments.

Physical therapy. Neurosurgery. Podiatry. Orthopedics.

The neurosurgeon suggested an L4-L5 Spinal Fusion in addition to cleaning out the S-1 nerve root. The podiatrist explained I have a Neuroma under the ball of my right foot causing several issues with my toes. The orthopedist recently discovered my left ankle ligament has loosened again, making it a candidate for a partial ankle reconstruction using a cadaver tendon to replace the existing ligament.

I looked like Sam in the above photo when I left the last appointment.

Through it all, I've worked with Adam, a physical therapist at Physiotherapy Associates, once or twice a week, and am finally convinced I'm building muscle strength.

The right leg is stronger.

I've seen three physical therapists since I fell in Nov' of 09', requiring ankle and back surgery five weeks a part. The first didn't know what to do with me after four weeks because I didn't have the mitochondrial disease diagnosis at that time. The residual numbness didn't make sense to him or anyone else until the muscle biopsy and spinal tap diagnosed weak muscles and unhealthy nerves months later. I tried therapy again six months after but worked with a female who once stated, "I don't know how you walk on this leg." I felt more fragile after my time with her than before I went in.

There's no doubt I was weak. But I've cut back on activity, another year and a half of walking has gone by, and Adam isn't afraid to push my limits. I'm getting used to new pain that sometimes signals progress and sometimes forces a shut down. But after pondering back fusion verses ankle surgery verses exercises in hopes of avoiding both, I'm choosing the latter for now.

My left foot hurts due to unstable ligaments and tendons. The right one is tight and numb almost three years after a ligament reattachment surgery.  My reality? They're never going to be normal. And for now, I value walking on one foot that's not numb.

Accepting there's no perfect fix is a step towards freedom.

I may be forced to go under again. But after years of feeling stuck and stymied by muscle weakness and pain, the progress I've made has me ready to overcome. I'm choosing exercise, diet, and even rest when needed. It's hard for mito patients to balance exercise and rest. But I've become a believer again that exercise helps. Even in small amounts.

"Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion." (Psalm 84: 5-7)

"They go from strength to strength..." I love those words. Have quoted them before. They resonate in my heart today.

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Mitochondrial Awareness Week (part 3 and final)

What more is there to say?

After mito mom Lauri and I shared our first cup of coffee, I walked away strengthened in a way I didn't know I needed. At the time, our table talk was more beneficial than any Beth Moore Bible Study (which I highly recommend!) While I valued sharing my life with someone who knew the mito lingo and was learning to live with the day to day reality of our disease, bottom line, I needed to know I wasn't alone in the journey.

What struck me the most when I met Tina was the peace she emanates in the midst of it all. Having traveled and lived large, I struggle to accept limits. But Tina and her husband see their role as parents to three diagnosed kids as a ministry. A trip to Disney? Probably not. Life as most know it? Not on the radar.

But Tina rolls with it all. And I think of her often.

I met a women in the nursery last night who has a child with a totally different genetic disease, with challenges much bigger than my own. After hearing stories about families in their disease community, I marveled at their "underworld". And it reminded me again of how many exist.

Cancer. Alzheimers. Lou Gerigs. Type 2 Diabetes. Spina Bifida.

And that's the few biggies that come to mind because I know people closely affected.

So while this is Mitochondrial Disease awareness week, perhaps the greater challenge is simply: be aware of those around you fighting through whatever challenge they face. Look it up. Google it. Learn something about it so you know how to discuss it with even just a basic level of knowledge. Believe me, your friend will be grateful.

Take a meal. Share coffee. Listen. Celebrate life. Lots of people live with low energy, severe limitations, and daily reminders that good health really is a fragile thing.

In closing, take a minute and absorb one more video. My music's in the background, the chorus sung at the end. Meet families from my underworld. Some are still journeying and some have fought the good fight. But together, a difference is made.



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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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Mitochondrial Awareness Week (part 1)

Mitochondrial Awareness Week began two days ago. I'm late joining the discussion because I battle mitochondrial disease. Last weeks energy allotment and part of this weeks went to the great furniture exchange that took place when a doctor decided my grandmother will never return to her assisted living apartment last Wednesday. I received an influx of furniture Thursday and have been sorting through it ever since.

I used to clean out drawers and closets with ease. I used to carry things up and down stairs without thought. Now I wonder which step will lead to the one too many that will land me in front of the TV nursing undesired pain.

My joints held up better than I expected over the weekend, but as my husband said Sunday night, "It's going to take you a week to recover."

I just couldn't put thoughts on the page yesterday. Too much fog to write. Too much tired to concentrate. Joints that turned to jello due to too much activity were in need of rest to coagulate once again.

I'm getting there.

So in honor of mito awareness week, I'll begin by posting a photo taken at the event, Hope Flies, a yearly fund raiser for mito disease. Two of my favorite mito moms joined the fun and we snapped a fuzzy picture:

Tina and Lauri both have kids who have battled mito since birth. Their stories are far more intense than mine and I find great strength spending time with them and hearing how they manage the daily challenges we face.

And since I have to keep this short today, I'm going to close by linking to a video created by "MitoAction and students from CDIA in Boston". Take a minute and watch:

The Way Energy Is Made.

You'll understand our lives just a little bit more.

And no matter how my mito cooperate on one day verses another, I try to lean into these truths: He is my source and my strength. My song in the night. My joy in the day.

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Lost in Manhattan One Year Ago Today





Meet my 91 yr. old grandparents: Gladys and Merrill Hughes from Media, PA, just outside of Philly. They've lived there for as long as I can remember. When their health issues raised concerns last fall, I decided to overcome travel fears due to my unpredictable body and visit.

I was also motivated by Sam's college test scores which resulted in mail from a few Ivy League schools. Since Don's oldest son graduated from Yale, and they sent the most, we combined a trip to Philly with a visit to his son's Alma mater. When schedules took shape, our trip coincided with the tenth anniversary of 9/11.

After a night in Philly, my cautious grandparents detailed a route for us to travel to New Haven, avoiding New York and all its bridges. But as we drove north, I got edgy. I wanted to see the sky scrapers - especially that weekend.

My husband and son tolerated my urge and we diverted, ignoring weekend warnings of explosives and closed bridges. Within a hour or two, I took this photo  of the George Washington Bridge as worship music blared and a shadow of Manhattan shimmered to the right. For me, it was the equivalent of bungee jumping.

The back seat view.



On the morning of 9/11, Don and Sam took the official college tour. I stayed behind because I couldn't have kept pace. But when they came back hours later, Don had secured a wheelchair to take me to all his favorite places. 

Smiling at the beginning of tour #2. 

 

We ate in  the Harry Potter looking cafeteria which is located directly behind Sam. Then we toured a museum to the right which holds a copy of the Gutenberg Bible. We even touched the glass wrong and set off an alarm.

 

 

As we left the museum, several black SUV's pulled up outside the president's office. It was like an episode of NCIS. Ready for a break, we sat on a bench to see what was up. A photo op soon broke out and we learned top Air Force military personnel had arrived on campus for a signing ceremony, initiating the return of the ROTC program to the campus this fall.

 

 

Next, we hiked to another corner of the university where this cemetery commemorates the lives of some very famous people. Don loved to jog here when visiting his son. 



Getting tired on tour #2. 

Don pushed me in the chair on bumpy and smooth paths for two or three hours. He never tired as he relived family memories. But due to flight costs, we had to catch a plane out of Philly the next morning. So we saddled up and headed south.

We could have been predictable. We could have avoided NYC. But the closer we got, the closer I wanted to be, especially on the tenth anniversary.

So we paid tolls. Lots of tolls. We crossed bridges. We went the wrong way on a highway that cost us about thirty minutes. And then finally traveled through a tunnel with plans to turn left on the other side and just travel around the edge of Manhattan. But when we rose out of the depths and buildings loomed tall over us, we had no lane choice but to go straight into the city.

I was delighted. Don was dodging taxis. Sam just wanted to get to Philly.

Manhattan isn't that wide so when we turned left onto a major thoroughfare, I knew we were paralleling the highway we were supposed to be on. So while Don avoided collisions, I soaked in the tall skyscrapers, the rush of cars, and the very big feel of the island city that never ever sleeps.

We drove for a while, not totally sure where we were, but found signs to our highway, and turned. As we sat at a light, we suddenly realized we were looking straight at the new World Trade Center building. We didn't get out. Or stop and walk. My feet wouldn't have carried me far. But we got really close to ground zero, somewhat lost in Manhattan, on the tenth anniversary.

And for this mito deprived, slow walking, low energy bodied self, it was even close enough.

We paid more tolls, crossed another bridge, watched the moon rise over the Statue of Liberty, and called my grandparents to admit we'd arrive much later than planned.



Ice cream and strawberries were still waiting when we walked in.

 

 

 I gave way to tears on the airport shuttle the next morning due to sharp nerve pain in my feet. The trip took a toll.  But Don and I had shared more of our lives with each other. I learned about Yale. He experienced the town of Media and my grandparents. And all three of us got close to the heart of a national tragedy that's posted on magazine covers still today.

More importantly, I didn't cave to mito travel fears that weekend. No, we made rich, timeless memories instead.

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Debi and the Place of Deep Healing

Debbie and her sweet family

I met Debi this summer. Her radiant smile and blond curls defied the stage 4 cancer growing deep in her body. Drawn to her effervescence (and sweet girls), I purposed to stay in touch with her in the coming months.

So I've called her about once a week to get the latest update. And there's always an update. Debi has a clotting disorder and when a doctor placed a port in her chest about a month ago now, two clots formed, delaying chemo and forcing her back on coumadin shots.

It's complicated.

Two blood clots alone would frighten the normal person. But Debi's taken it all in stride. Crying at times. Laughing more. And just trying to live in the midst of head shaking trial.

She surprised me Thursday morning with an early call. I didn't recognize the number or check the message for hours cause I slept late that day. But when I heard the request from her perky voice, I plopped back on my bed, looked straight through ceiling, and said, "Really?"

Debi had called to ask me to attend a healing service with her that night. Sounds simple enough. But it was a service held at a church that once left my soul in great confusion. I've never doubted the impact of the congregation's monthly healing services but just couldn't bring myself to go. Even now it's hard to explain. Was it pride? Unforgiveness? Fear? Or just wounds that would not heal?

I don't know.

But even though different folks have mentioned the service here and there over the last few years, I've avoided going. Debi didn't know I had any ties to the church so her call seemed an innocent nudge from above. It was time. Time to face the past so I could walk more fully into my future.

What humors me most is that I thought I was called to minister to Debbie: ms. stage 4 cancer. But no. God used Debi to take me to a place a great pain to experience more of His healing.

And it was good. It really was. Good to see old friends. Good to soak in His presence. Good to face what was... to live more complete in what is.

I love it when God surprises me like that.

And I really love my new friend, Debi. Will you pray for her this week?

I've lost a husband to cancer. Am married to a man who lost his wife to cancer. And I've been sick now for years. But that doesn't change that James wrote,

"And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective." (James 5: 15, 16)

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