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…..