Chapter Five: Even When We Cannot See It, God Is Still In It.

“Heal me Lord & I will be healed, save me & I will be saved, for You are the One I praise.” Jeremiah 17:14.

This blog post is probably the hardest I’ve determined to write thus far, & the memories have brought up a lot of long suppressed feelings & tears. But, it has also brought up  renewed awe at the Lord’s guiding hand on my health, & His constant, undeniable presence even on the hardest of days.

Today, I’m surrounded by memories of Thanksgiving last year & how much has changed. Actually, it has been almost exactly one year since receiving my first diagnosis. Since then, I’ve survived a feeding tube, pseudo seizures, chronic pain, a major vascular surgery, & more. I have absolutely no clue how I’ve managed to survive all of that, except the strength & grace of God.

Last year, I was feeling slightly better the week of Thanksgiving. I put on makeup for the first time in weeks & I even helped Mom prepare “Edgar the Turkey.” We were overjoyed because I was able to eat a deviled egg, a few bites of turkey, & some potatoes without unbearable pain or nausea. In fact, I was feeling so optimistic, I began to doubt keeping my appointment with the GI specialist because I thought maybe I was finally on the mend. Now, in hindsight, I was still in really poor shape. But I had forgotten what feeling healthy actually felt like, so even the slightest victory convinced me I was almost healed.

Thankfully, my parents knew better & still had me go. 😉 So, two days later, Mom & I made our first (of so many) roadtrip to UVA hospital.

Everything was very new to us, & we were both very nervous. Our worst fear was that once again we would leave with no answers.

But God had a plan.

A knock sounded at the exam room door & I jumped. An intern entered the room & introduced himself. He explained he was supposed to be studying in the library, but he was bored, & my particular case had piqued his interest. He requested to hear my situation & ask me a couple questions. Honestly I thought the whole thing was downright strange, but I consented. Next, the pediatric gastroenterologist entered. The intern had briefed him on most of my predicament, so he simply asked me a few more questions & then gave me his thoughts.

His first theory was that I had IBS…aka Irritable Bowel Syndrome. His second theory was depression. His third theory was high stress.  He asked me to try birth control & anti-depressants & to check back in a few months. But then…he mentioned he wanted to run a special test called an upper gastrointestinal tract series while I was there.

Saying I was discouraged was an understatement. “I knew it would be a waste of time, energy, & money. I knew they wouldn’t find anything again. I knew I would leave undiagnosed. I’m going home with no answers. I’m going home still severely sick. How in the world will I ever find healing.” 

But the day wasn’t over yet. 

It was a pretty simple procedure, & would turn out to be the very one that diagnosed me. They had me drink some liquid contrast, lay under a scanner, & then watched on a x-ray screen to see how my body digested/processed the liquid. We first got the inkling something was definitely amiss from the radiologist. She wasn’t legally permitted to tell us much, but she did tell us something was, “compressed & at a very narrow angle.” & “to keep your phone on because the specialist would definitely be calling asap.”

Sure enough, less than an hour later, we got the call. We were still feeling discouraging emotions from the visit, but I noticed Mom’s tone changed almost immediately. The doctor was a lot more serious on the phone than he had been that morning. He informed Mom my test showed I had prominent Superior Mesenteric Artery Syndrome.

According to the Radiological Society of North America, Superior Mesenteric Artery Syndrome, also known as SMAS, is one of rarest disorders known to medical science. Not even recognized by the US National Organization for Rare Disorders, only 0.13% of the population is officially diagnosed. SMAS is a gastro-vascular disorder involving the small intestine. The third and final part of our small intestine, titled the duodenum, is protected by a small layer of mesenteric fat. According to the U.S National Library of Medicine, SMAS is caused by the loss of this fat-pad, resulting in a compression of the small intestine by the superior mesenteric artery and the abdominal aorta. In English, this means when I ate or drank, it was stuck in my stomach, unable to digest due to the severity of the compression. This completely explained my severe pain, inability to eat, constant nausea, & frequent throwing up.

Now, in all our research, we had never, ever heard of SMAS. This was completely uncharted territory for us. I tried googling it on the drive home, but there was hardly any credible information about it on the internet, & the only two consistent phrases were, “extremely rare” or “can be fatal.” At the time, I had absolutely no idea what it was or how I would find healing. I had no idea the journey I was about to embark on. I had no idea everything I would face in the next year. But in that moment, I was simply thankful to finally have a diagnosis. I was relieved I wasn’t crazy. I was relieved it wasn’t all in my head. I was relieved we’d finally gotten an answer.

We found out later SMAS is usually one of the very last things doctors will check for because of its rarity. In fact, one in three cases are not properly diagnosed until autopsy. It’s basically unheard of to receive a diagnosis as quickly as I did. People can go for years without a diagnosis, causing all kinds of dangerous complications.

In fact, the specialist would’ve forgotten to run the test if Mom hadn’t thought to remind him.

We also found out about a month later it was the intern who suggested the gastro intestinal series. He made an educated thesis based off my height, skinniness, & rapid weight loss.

I look back at these three facts alone with complete wonder & amazement. That day was one of the most physically & emotionally trying of my life. But God was still overwhelmingly present that day….orchestrating each tiny detail leading to my diagnosis.

Even though I couldn’t see it, God was in it. 

To be continued…..

 

Chapter Four: Why Me, God, Why Me?!

“My ears had heard of You, Oh Lord, but now my eyes have seen you.” Job 42:5

It was now November, & nothing had improved. I’ll never forget one particular afternoon when the vastness of my situation hit with undeniable force. I was trying so hard to finish up some Chemistry homework & I was simply unable to do it. My eyesight blurred when I tried to read the textbook, & my mind wouldn’t cooperate & solve the equations. Chemistry was one of my best subjects (I loved it!) so it really frustrated me. I stumbled into the living room where Mom & Dad were talking & started to bawl my eyes out. My poor parents thought I was in pain again & I’m pretty sure my hysterical display was probably pretty disconcerting. I blubbered my dilemma & ranted my intense disgruntlement at my brain for not cooperating at my high standards. I didn’t comprehend my body was malnourished & low on electrolytes. I didn’t understand the harsh fight my body was facing. I simply didn’t understand.

I felt completely cut off from the world, but I was so sick I didn’t even have the strength to care. At this time; I hadn’t gone public quite yet. I’d kept this entire scenario hidden from almost everyone except very few close friends. Looking back, I believe a vast part of that decision was denial—the persistent belief everything would blow over if I was guilelessly  patient & gave it enough time. But I also believe even larger was all-consuming fear. The fear of gaining the status of the invalid friend…the one everyone pities & walks on eggshells around. The fear of suddenly being unable to measure up to the academic standards, the packed college resume, the successful conversation about all she’d accomplished since they’d last talked. The fear of being boring & unappealing to talk to. I feared the questions, the opinions, the unknowns, the reactions. I truly believed (& still do sometimes!) my entire worth as a daughter, sister, friend, & even future help-mate was completely in jeopardy & I was going to do everything I could to camouflage it from everyone I possibly could.

I was unable to do much at all. My days usually consisted of watching movies, (Luke & I managed to finally conquer some Star Wars movies!) attempting a shower, trying to eat, or tediously accomplishing some Chemistry homework. I’d basically gotten used to this cycle. I was used to being unable to eat more than a few bites of food. I was used to the constant nausea & pain. I was used to feeling sick all the time.

On November 18th, things took another turn for the worse. My pain was higher & even more concerning than usual, & I started to reject even water. Concerned, my Mother loaded me in the car for yet another visit to the ER. They ran all the typical blood-work & scans & per usual, everything came back normal. They gave me a high dose of morphine for the pain, but unfortunately that was when we realized I’m highly allergic to morphine, so it ended up making me feel worse, not better.

My best friend Hannah, her Mom, & her sister promptly came to visit as soon as they heard I’d be there for the evening. She totally surprised me, & I treasured her company as a welcome distraction from the fear & colossal unknowns. Her presence was a much-needed reminder of how God provides for our every need in times of distress. ❤

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Shortly after my impromptu ER visit, my parents made the executive decision to book an appointment with a pediatric gastroenterology specialist at UVA. The appointment was originally scheduled for January 2017, but praise Jesus, He provided an appointment for immediately after Thanksgiving…merely a week away!

& hence began the real journey…..

A lot of people ask me how I handled everything emotionally at that time….the unknowns, the questions, the tests, the paralyzing fear, the sacrifices, the loss… & the answer is I really didn’t. I was so focused on day-to-day survival that there was no energy to dwell on the emotional aspects. But I will say I struggled a lot with understanding why this was happening to me. That was a very real mental battle for sure!

Most of us are familiar with Job from the Bible. Man, what a guy! He was so faithful & obedient to God…so much so, in fact, that Satan decided to send all kinds of horrible tests, arrows, discouragements, & heartbreak his way. Yet through it all, Job continued to worship & trust in the Lord, even when others provoked him to just give up. But eventually, Job questioned God, “why me?!”

I love what happens next.

God didn’t directly answer Job, but rather asked him a series of questions that were impossible to answer. “Do you know where the clouds hide?” or “How does the sun move across the sky?” or “Can your voice thunder like mine?”  All the while demonstrating to Job that Job did not need to understand why, because Job is not God. God is God, & He is perfect, just, sovereign, loving, & so much more.

In response, Job declared, “My ears had heard of You, Oh Lord, but now my eyes have seen You.”

This verse is now my life verse. This verse is my testimony. I may never understand why I got so sick. I may never understand why God took Guatemala from me. I may never understand why. But I finally came to the point where I didn’t have to understand. My Heavenly Daddy granted me peace. I rested in this truth: God’s plans are not always our plans, but no matter what, His will & timing are always perfect.

As Job stated, I haven’t just heard of God’s works. I have seen Him working in indescribable ways, & that is a greater gift than ever imaginable. That alone makes this journey worth it.

To be continued…..

 

 

Chapter Three: God Doesn’t Call Us to Easy

“I just wanna know all the answers & I wanna know they won’t hurt. I want life to go according to schedule. I want each day to turn out exactly how I wrote it in my planner this morning. I want to see two hours ahead of me, but mostly I want to see what next year holds. I want perfection & I want control. I want to get As & I want to be organized. I don’t like the mess of this, this life. I spin quicker & quicker, & the more I spin, the more out of control I feel & the faster I keep spinning. Finally, the dizziness overcomes me & I fall into the cross. “Dear One, let me have it” He pries open my death grip to find a small, crumpled piece of paper with one word on it: control. He takes my small hands in His & together we drive a nail through it. I collapse into His arms, and once more, I am free.” -@sheiscaptivating

September of 2016 (mostly) went according to my schedule. I quickly discovered keeping myself crazy busy was a welcome distraction from fear of the unknown, so I continued with my usual activities. I vividly remember babysitting an adorable toddler one evening, & after he fell asleep, laying on their bathroom floor, shaking uncontrollably & throwing up the small snack I’d recently eaten. I ignored my physical limitations & continued to push on; refusing to accept weakness. I kept telling myself that everything would naturally resolve itself in time. I was going through a significant life change and I was under a lot of stress, so I figured my body was simply reacting to my current circumstances. But, my family was about to realize just how serious my situation was.

At the end of September, my family went to Myrtle Beach with my Dad’s side of the family to celebrate my grandparent’s 50th wedding anniversary. It ended up being one of the best times of my life. I enjoyed every second of relaxing on the beach, swimming in the pool, eating delicious food, shopping at outlets, & finally taking a break from school & life. (Okay, I admit, I had brought my Chemistry textbook along, but I genuinely loved Chemistry, so it was no hardship! 😉 Everyone could tell I had finally truly relaxed & let go of absolutely all my stress.

But strangely, I grappled all week with physical difficulties, & our last night Mom was particularly alarmed. In fact, she seriously considered taking me to the E.R; I was in such bad shape. I spent most of the car-ride home bent over & moaning…unable to keep anything down & feeling plain miserable. When we got home, I collapsed into bed with abandon & stayed there until Mom whisked me to the doctor’s office the next day.

My pediatrician ran more tests & blood-work panels, but everything continued to come back seemingly normal. I was told to continue monitoring my symptoms & report if anything changed/worsened. Yet one thing continued to nag us all: if stress was supposedly causing my turmoil, why did things become so much worse when I wasn’t experiencing any stress whatsoever? what if something was actually truly wrong with me?

October arrived, & everything continued to spiral out of control. My prior symptoms had drastically worsened, and concerning new ones had arisen. I was nauseated all the time, & couldn’t eat more than a few bites of food without throwing up. I tried eating a gluten-free, dairy-free, & sugar-free diet with no visible difference. I was battling frequent, extreme migraines that would end with me lying on the dark bathroom floor crying out in pain & hanging my head over the toilet vomiting. I was incredibly weak, dizzy, & shaky, startlingly pale, & could hardly even shower without either falling or yelling for Mom. But worst of all, I was experiencing severe abdominal pain–worse than anything I’d ever experienced.

There wasn’t a single indicator of what could be wrong. My pediatrician had no answers. The E.R had no answers. Every single blood-panel, test, & scan came back clear. Research led to dead-ends. We didn’t understand how I could feel so awful but seem so healthy.

My mental state was also distressed. I experienced intense fear & frustration as my health took over my life. My parents stepped in & kindly enforced me to stop over-exerting myself with activities. One by one I watched my security blankets slip away: school, babysitting, volunteering, & worst of all…my anticipated mission trip to Guatemala.

I’m not going to lie. I was downright angry at God for a few weeks. I didn’t understand why God would perfectly orchestrate everything, provide the monetary means, lay the passionate calling on my heart, & then rip it away from me…just like that. I didn’t understand why this was happening during my senior year….what was supposed to be my best, most exciting year yet. I simply didn’t understand. Period. & I was extremely bitter about that. I didn’t think it would be possible for me to ever love God again. But, I continued to (very grudgingly) do my daily devotions & pray, & I am really glad I did.

On what would end up being the last day of my funk, I opened my prayer journal to the very first page, & what was written at the top brought me to my knees in tears. At the beginning of the year, just 8 months prior, I had written, “My 2016 theme will be to trust God in all things.”

Wow.

God was preparing my heart even then. I had written that with the intent of trusting God through all things involving provision and guidance for Guatemala, but all along, He had a different plan to bring me to complete trust in Him.

The fact is, we’re all human, & we will all have human moments. We’ll all be confused, frustrated, angry, sad, & heart-broken about various situations. It’s simply inevitable. But I have learned it is all about how we handle our humanness. We can turn away from God, allow our funk to dominate our lives, & walk around with a dark Eeyore cloud over our heads 24/7. Or we can choose to have a God glorifying attitude despite our circumstances & use those very circumstances to point others to Him. Yes, this journey has definitely been a rough one. Yes there has been heartbreak, tears, frustration, & grief. In fact, those very feelings are present even today! But if I take time to look back at the bigger picture, I realize the past year has also been filled with victories, triumphs, and simply the Hand of God. There is beauty in tragedy, light in darkness, and triumph in trial.

You see, God doesn’t call us to easy. God doesn’t promise He will shield us from pain and suffering. But God does promise that His love for us is greater & more powerful than anything Satan sends our way. I don’t know what your current situation is, or what God is currently doing in your life. Maybe everything is going smoothly, or maybe you’re going through a time of trial. But whatever is going on, I promise you this: in the words of Corrie Ten Boom, “There is no pit so deep, where God’s love is not greater still.”

To be continued…..

 

 

 

 

 

Chapter Two: The Beginning Stages

“I’ll take it. I’ll take His words like a daring covenant, not knowing what’s yet to come: there is no growth without change, no change without surrender, no surrender without wound, no abundance without breaking. Wounds are what open the soul to plant seeds of deeper growth.” -The Broken Way

 

My story really starts in August of 2016. As a senior in high school & vigorous overachiever, I was living a very busy, full life. I was managing six scholastic subjects, studying for the SATs, volunteering at a non-profit, preparing for the upcoming speech & debate season, working out 4+ times a week, preparing to go on my very first missions trip in the fall, & babysitting on the side. Oh, not to mention attempting to keep up with a social life. You see, I had a non-negotiable life plan & schedule. I would graduate high school with the fullest resume possible, go away to the college of my choice, start dating, graduate, get married, begin my nursing career, have some kids, etc. You get the picture.

But, life threw a wrench in my “rock solid” plan. Actually, to be more accurate, that’s when God stepped in & said, “but here’s Mine.”

Suddenly, I began to experience peculiar symptoms. I was extremely thirsty, & consuming excessive amounts of water, to boot! Between 100-130 ounces a day, to be precise. I was frequently nauseated, & lost an appeal for basically all food. Disclaimer: I have always had a great love for food, so this was particularly strange behavior. I mean, this is coming from the person who ate an entire pizza with her best friend AFTER eating a full dinner….for a snack. So, my family & friends knew something was up! 😛

Like any great parent, my Mom promptly booked me an appointment with my doctor to get things checked out. After a consultation & extensive bloodwork panel, I was given a speech about how stress affects the body, a reminder of the high stress linked to senior year, & told there wasn’t anything visibly wrong with me.

I  promptly plunged back into my life schedule with relief. Thank goodness! Nothing was going to interfere with my perfectly organized agenda!

But little did I know, my journey was only just beginning.

 

Wow. If I’m being absolutely real here, I look back at where I was physically, emotionally, & spiritually a year ago & thank God that He changed my heart & my plan. To be even more shamefully honest, I thought I had everything perfectly together. I was painfully comfortable in my Christian walk. Yes, I was doing my devotions & praying, but I wasn’t dependent on God. I was dependent on myself. My plan. My day. My schedule. My to-do list. Me, me, me. I thought I could handle life on my own without Him. I thought it would be just peachy. I cringe when I look back on 17-year-old me. Oh, how wrong that mentality was.

But isn’t that usually how it usually goes though? We settle into a comfortable routine, think everything is adequate, and expect Jesus to follow us.

Yikes.

I plan on having a blog post specifically dedicated to this dangerous mentality, but for now I’ll just say this: “God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.” -Francis Chan

As I’ll expound in greater detail later on, God had other plans. He brought me out of my comfortable bubble to renew my faith. Did I cooperate immediately? Nope. Was it easy? Absolutely not! Did I fight Him? You know it. Were the plans anything like my own? Hahaha, no way! Is He done yet? Nope! But….did it renew my love for Him? Affirmative.  Has He been with me every step of the way? Yep! Has it been worth it? Absolutely!

You see, in that moment, one year ago, God loved me too much to leave me the way I was. & I am so glad He did.

To be continued…..

 

Chapter One: Faith over Fear

This is the post excerpt.

“God may ask you to rise up and lead in ways that will take humility and courage, and Deborah has set the example. But God is with you for every battle you face. The enemy may intimidate you with his strength, but God is able to overthrow him & his schemes.” -Patsy Clairmont.

A year ago, around this time, my health had just taken a drastic turn for the worse. I was completely bed-ridden, unable to eat, unable to shower, unable to do school, unable to babysit, unable to go to church, throwing up consistently, & battling severe abdominal pain. I was enduring test after test, needle after needle, & receiving no answers. It was also around this time God first laid the undeniable call to blog about my journey on my heart, and I replied with a resounding, “no, God! What if no-one reads it? What if I get negative feedback? What if I sound inept and stupid?” The protests went on & on for months….Satan was intimidating me with his lies.

Overtime, every so often, (and in completely unexpected ways) God would remind me of His call, and my protest was always the same. Honestly, I always would naively hope He’d forgotten! (Haha, what a joke, Grace!!) But, as He always does, He won over my anxious heart just a few short weeks ago, an entire year later. Sometimes I forget most people don’t know a fraction of my story. Sure, 90% of my social circle knows I’m chronically sick & struggle a good deal physically, but they don’t know exactly what I have, how its defined, what I’ve gone through, & most importantly, how God has worked through it.

You see, as I was having my quiet time a few weeks ago, I was praying out loud, and I petitioned, “Father, please use me and my experience to point others to You, because if my suffering doesn’t point to You, it is truly for nothing.” Wow. The impact of my words hit me like a massive tractor trailer truck immediately after I said them. “If my suffering doesn’t point to You, it is truly for nothing.” I seriously wonder if God planned that!

So, even as Satan’s lies began to whisper in my ears, I surrendered to the call. The enemy was intimidating me with his strength, but God overthrew his schemes.

I share this because through this blog, I want to tell you my story…the good, the bad, and the ugly. I want to be real and raw. My hope is that through this blog, people can understand these rare disorders better. My hope is this will be a tool to uplift & bless others. My hope is that through sharing what I’ve learned and how God has compassionately shown me His glory as He’s worked in my life, it’ll encourage & speak to even just one single person. Because if I hide my suffering, it is truly for nothing.