My Journey to Health // Personal
"They Will Run and Not Grow Weary..."
I was running a marathon without ever having left the couch. My heart rate would be pounding in my ears and my breathing was somehow deep and shallow at the same time. Just standing had me on the verge of collapsing on the floor. My face and palms would even break out into a sweat.
Anxiety? Not to that extent. I just had no clue what was happening to my body. It took about a year of remaining in this clueless state before a doctor could finally give me a diagnosis: chronic fatigue syndrome.
Before being diagnosed, a million fears crept into my head as to what was wrong with me. I can remember watching A Walk to Remember and having the sudden revelation that had me crying to my mom: "I have leukemia!" Thankfully, my mom was always amazing at calming me down and reassuring me. She was also the best nurse without actually being a nurse (love you, mom!).
It's really hard to explain my illness. Any person given the diagnosis can back me up on how frustrating it can be to define it. Chronic fatigue syndrome is pretty much a blanket term for a disease that so many people have with similar symptoms but different causes. It actually goes by a new name now: systemic exertion intolerance disease. The most common response people have given me after asking about my illness is "So you're just tired all the time?" Well yes and no.
Now being healthy, I understand what it means to be tired and what it means to be fatigued. In fact having exertion in the name is probably more well-suited. When I feel tired now, I want to take a nap. When I felt tired then, I wanted to collapse on the floor. My body technically should have fainted to help reset my system, but because of the heart condition that I have (POTS), combined with an issue with low blood pressure (NMH) it wouldn't allow me.
Hardships and obstacles obviously dotted my day-to-day activities when I was sick, but here is a quick synopsis of how it effected my life by looking at my academic life: I was pulled out of elementary school in the 4th grade to be homeschooled, got sick the summer before my 6th grade year, entered into a private middle school for 8th grade with accommodations, attended a private high school for about three months, transferred to a public high school as a part-time student, dropped out to get my GED, started at a university part-time, and finally dropped out when I became completely rundown. In and out in and out. Always feeling like I was running, but never getting anywhere.
"But Those Who Hope in the Lord..."
There was a lot of hope in countless treatments to fix me that ended up not helping much, but it wasn't until I came to the Lord completely hopeless in my circumstances that I became completely hopeful in him. And you know what? He acted with an answer.
It started with ringing in my ears that I suddenly couldn't deal with anymore. "Mom, I need to just get an MRI." My incredible chronic fatigue specialist thought it was worth it and ordered it for me. What we found was not just shocking. For us it was a miracle.
"Why didn't she ever tell me she was in so much pain before?!" That was my specialist's reaction when the results of the MRI showed a severe bulging disc in my c-spine. The thing was though, I didn't have any pain. Sure I had kinks in my neck before and I can vaguely remember for maybe a year not being able to turn my neck completely to look over my left shoulder, but pain? It didn't even register!
My specialist was probably shaking his head in disbelief. And then he came up with some studies that led us on a rabbit trail to healing. Apparently having compression in different areas of your spine can cause different symptoms, even effecting heart rate and blood pressure. This was research that was only just grazing the surface of the idea that spinal cord compression could potentially cause fatigue, so the possibility of finding a surgeon willing to jump on that train was very slim. In fact, we even hopped on an airplane to Milwaukee to meet with a surgeon who had conducted his own research on the theory.
When the need for surgery was brought to our attention, I freaked out. I was absolutely terrified of the idea of not being in any control of my body and leaving it in the hands of a complete stranger. I instantly regretted ever watching Awake. You know... the movie about the guy that wakes up in the middle of open heart surgery and can't tell his doctors that he can feel everything they're doing to him!
My family and I took a lot of time to pray about the next steps in this journey, which led us to a man that I can't thank God enough for.
It was my old Young Life leader who recommended him. He had interned with the orthopedic surgeon and could not stop singing his praises. He was going to be the man who boarded the train with us. He was in agreement that having spinal cord compression from a bulging disc could produce symptoms alternative to the more popular pain symptom.
He believed that this could be how God would choose to heal me. This man spent longer than most doctors meeting with me about what the surgery looked like and what to expect. There was no evidence that this surgery would work, but he chose to hope in the Lord that it could. And it did.
One other thing that God managed to pull off for us before I continue. At the time, only a spinal fusion fell under what was insured. This limits mobility and puts strain on the upper and lower levels of discs meaning that it could be very possible 10 or 20 years down the road I would need more surgeries. My surgeon wanted to do a disc replacement which would would act as an actual disc, maintain the same mobility, and hold up a lot better without putting strain on those upper and lower levels.
But it wasn't insured! Well, after a year of prayer a friend of my dad's who was in insurance guided him to the discovery that insurance was suddenly covering the surgery. We booked the surgery for a month later.
"Will Renew Their Strength"
Again, I can't even tell you how grateful I am for my surgeon. I went in sobbing crying convinced I would not come out of that surgery and he just knelt down beside me and began to pray for me. I really don't know if I could have gone through the surgery without him. The next thing I remember, I'm waking up in the hospital feeling clear as a bell; super alert. No brain fog! (yeah that was another frustrating symptom)
Two weeks out of recovery, I started my first job as a dog-walker and a couple weeks later added on working as a veterinary assistant (I love animals). Things were never the same in the best way possible.
Looking back, it's actually hard to imagine what it felt like to be sick because now all I know is what it feels like to be healthy. Sometimes during spin class I remember what that racing heart felt like that I would experience just laying on the couch (yes, it was that bad) and the common cold that stuffs up my head is similar to the brain fog I would experience. I sort of need that reminder sometimes because I start to forget where I came from; how that part of my life formed me into who I am today.
I am so grateful to my doctors, the chronic fatigue specialist and the orthopedic surgeon. But none of this could have happened without God. You know how the Israelites would set up stones as reminders of the promises God fulfilled for them? This is my standing stone. I can see God in how he put together every piece of the puzzle that was for so long a complete mystery to us. The sequence of my desperate prayer, the MRI, the bulging disc, finding the surgeon, and the surgery suddenly being covered, it just has God's hands all over it. It was too perfect.
The surgery that I had ended up having led my specialist and surgeon to look at others displaying similar symptoms. Several of those people received the same surgery and came out of it a different person just like me.
I am so incredibly grateful that God not only renewed my strength, but also used my story to help others. I would not be the person I am today without my journey to health, which is why I felt that it was important to share my story with you guys today :)