Hope that Soars (Part 1)

Have you never heard?
    Have you never understood?
The Lord is the everlasting God,
    the Creator of all the earth.
He never grows weak or weary.
    No one can measure the depths of his understanding.
He gives power to the weak
    and strength to the powerless.
 Even youths will become weak and tired,
    and young men will fall in exhaustion.
But those who trust in the Lord will find new strength.
    They will soar high on wings like eagles.
They will run and not grow weary.
    They will walk and not faint.
(Isaiah 40:28-31, NLT)

I had a college professor who put these profound words from the prophet Isaiah to music and each time the song comes to mind I’m drawn back to how my journey toward a HOPE that SOARS began. Sophomore year of college, I had the opportunity to perform in a talent show with a dear friend, a song we had rehearsed for months. Prior to the audition, I remember feeling strange but couldn’t quite verbalize exactly what I was experiencing until, during the song, I blacked out completely. Living close to home allowed the school to contact my mother, a nurse, who believed it was most likely dehydration from an illness I had recently experienced.

Several similar episodes transpired throughout college and into my adult years, but we always attributed them to a vasovagal response to pain. I naively thought the pain was a normal part of being a woman, I was embarrassed about what I experienced each month. I thought isn’t this what everyone goes through?  Little did I know, not everyone faints from a migraine, or has to miss a week of work due to pain from their cycle.

During a hospital stay in 2010, I was advised to consider a life altering surgery that would most likely alleviate the source of my problem. This was an incredibly difficult decision as the doctor confirmed our fears of not becoming parents naturally, but I knew ultimately God had a plan for my suffering. Due to my age, the physician opted to perform a partial surgery but as they say, hindsight is 20/20… That decision led to multiple doctor visits, 2nd opinions, trying to pinpoint recurring pain, ultimately leading to a total of five abdominal surgeries in three years.

In the midst of navigating chronic pain, I began noticing other symptoms that didn’t quite match what I had previously experienced in an otherwise “normal” existence but wrote them off as having been thrust into surgical menopause. After all, I had already missed out on so much living, I didn’t have time for anything new, but God had an alternate plan.

My husband and I are blessed with nine nieces and nephews and we had the task of keeping our precious, then three year old niece, for a week in 2016 while her baby brother was born. I was so excited as this angel had wrapped me around her finger from day one. We played until bedtime, sang songs and did everything her little mind could imagine. On one particular day of our adventure together, I remember being at the park and having to stop to catch my breath every few minutes, my heart racing, feeling clammy and faint. I tried to hide my plight from watchful eyes, but couldn’t quite pull it off.

As the syncopal episodes increased, my mom suggested placing me on a holter monitor to see what, if anything, it revealed. The follow-up confirmed that my heart was beating too quickly, the majority of the time. Easy fix right, medication prescribed, I would be as good as new… or so I thought.

I began feeling frustrated as new symptoms surfaced and the episodes made activities of daily living difficult. Being interested in the research I tried to define exactly what I was experiencing so I could better explain myself when I was at doctors appointments. I began narrowing my research and it became increasingly obvious to me that my symptoms matched those similar to patients with Postural Orthostatic Tachycardia Syndrome. A relatively common condition but not widely recognized by the medical community, with no FDA approved treatment options.

Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia that is estimated to impact between 1,000,000 and 3,000,000 Americans, and millions more around the world. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.
http://www.dysautonomiainternational.org/page.php?ID=30 

Fortunately, my family physician had four other patients in his practice experiencing these challenges, so he proved an invaluable resource and referred us to a leading specialist in the field practicing at Toledo University.

The nine month wait to see the “POTS guru” was well worth it, he spent nearly three hours explaining the Autonomic Nervous System and how dysfunctions lead to these abnormalities in some people. His evaluation helped us understand that I had most likely experienced this since early childhood with symptoms waxing and waning throughout adolescence into adulthood.

To say I was relieved following that visit is an understatement, I felt validated, what I had been experiencing wasn’t all in my head. I had a plan of action and a goal to work toward to improve my quality of life.

But often times God uses those brief moments of clarity to remind us who is ultimately in control…

…Continued in Hope that Soars (Part 2)