It’s no secret I’ve been sick. Or at least, I don’t think it’s a secret. I’ve shared a lot about it on Instagram (are you following me there yet? Come say hi @rachel.maier.writes!), but haven’t filled you all in here because the truth is, I have been very, very tired. Even thinking about writing posts with recipes wiped me out. And so, silence ensued.
But I’m feeling better now–or at least, I’m improving. I talked with my mom the other day and laughed because saying “I’m feeling better” suggests I am better, which of course by now you probably realize I am not. I am improving though. Minute by blessed minute, my body is responding to the miracle of having the right medicine for the right diagnosis–and Lord help us all, when you don’t have a complete picture of what’s wrong, it’s hard to know how to make it right.
It all started on my 40th birthday. Well that’s not true–it all started the summer before my senior year of high school. This particular flare up started on my 40th birthday. Instead of lighting candles on my birthday cake, my body flared up hot and angry. I got plenty mad about it too because I had just gotten over a nasty flare up last fall. Last time I evaded going to a GI doctor (I had yet to establish care with a new once since relocating here a couple years ago), but this time around I knew I had to finally go.
I sat in his office nervous, knowing the severity of my symptoms warranted a colonoscopy, so you can imagine how surprised I was when the doctor dubiously said, “It’s IBS, I think. Not Ulcerative Colitis.”
“Even with the bleeding?” I asked.
“Even with the bleeding,” he replied.
I wanted to shout BS at him. (But I didn’t. I have more self-control than that.) I bit my tongue and left that day, trying to wrap my head around the possibility that he was right. I tried to trust my gut, but I entertained the idea that perhaps I had overreacted to gut distress for all these years, and maybe, just maybe, God was giving me the answer for which I asked him repeatedly: a name for the crazy gut issues that stumped countless doctors for years.
I was so tired of hearing “You have Irritable Bowel Syndrome (IBS).” When I was almost 20 years old my family doctor diagnosed me with IBS and showed me to the door with a smile, telling me to eat plenty of yogurt as he waved goodbye. I heard that same story again in my early 30’s when wheat and gluten triggered similar responses, but that doctor scolded me for inquiring about Celiac Disease and shooed me out the door with an IBS diagnosis (again) along with strict orders to take a daily fiber supplement. Here I was 40 years old hearing IBS again. It threw me for a loop.
In all these years, only one doctor gave me an opinion with grace and insight. He guided my decisions and oversaw my gut health until we relocated three years ago, but his words still rang in my ears that day, nagging me and making everything even more confusing. That doctor specifically told me he suspected I had undiagnosed Celiac Disease, but recommended against testing for it because I had been gluten free for several years at that point, and I already knew what I really needed to know: that gluten wreaks havoc on my system, and my symptoms improved dramatically without it in my diet. In his words, adding gluten back into my diet to confirm the diagnosis is “just too dangerous.” After ordering a colonoscopy, he diagnosed me with proctitis and advised me to stay gluten free to control my symptoms of colitis, and that there was a high likelihood all the bleeding in my colon was related to my gut issues, despite the fact that the test didn’t show it yet.
But here I was hearing IBS again. In this doctor’s opinion, the results from my previous colonoscopy were inconclusive. He just wasn’t convinced I had Inflammatory Bowel Disease at all. So he ordered a colonoscopy to investigate and confirm his theory.
And this, friends, is why tests are so important: the colonoscopy settled once and for all that I do, in fact, have Ulcerative Colitis.
After the procedure he very matter-of-factly reported I do have ulcerations in my colon, which means I do in fact have a form of Ulcerative Colitis, and the condition will likely progress and it puts me at a significantly higher risk for colon cancer.
The weight of his words fell softly on my shoulders because I already knew all this. Somehow, deep down in my bone-tired gut, I knew.
I wasn’t sad about it, exactly, but wrapping my head around the facts that finally prove IBS does not capture the whole of what’s wrong stung. I felt like I wasted twenty years. If I had gotten better insight earlier, would things be any different than they are now?
The whole ordeal got me thinking back to the glory days before any of this started, back when gluten wasn’t off the table and disease wasn’t something I dealt with and food was just food. It was a friend, not a foe, and a source of joy and fun and comfort–not hurt or hardship or pain. I recalled the days when sharing a booth and a burger at Red Robin was a pleasure, not a pain. My best friend Molly would order the the Banzai Burger and convince me to do the same, and we would eat basket after basket of seasoned fries while we mapped out our route through the mall, hitting up Bath & Body Works and Express first; then on to Macy’s and the Disney Store before swinging by the Dairy Queen for Blizzards on our way out the door. It never crossed my mind that one day grabbing burgers with my best friend would be a distant memory, or that I would spend more time mapping out the mall for bathrooms instead of boutiques.
Clearly, things changed.
Twenty years later I know the truth: my gut isn’t just finicky; it’s inflamed. It’s not just distressed; it’s diseased. This condition is life-long, but shoot–it has already been life-long, hasn’t it? It’s ugly and uncomfortable and embarrassing too–but it’s my story, nevertheless, and I know beyond a shadow of a doubt that it’s valuable in its own way.
I was chopping up leftover pineapple a few nights ago as I wrestled with all this, frustrated again that all this transpired because of a flare up on my 40th birthday–and then it hit me: the timing was a gift, because truth be told I would not have gone to the doctor or had this procedure or gotten the diagnosis I desperately need to move forward had I not had a flare up that day.
I whisked together sticky, syrupy coconut aminos with sharp and biting vinegar, and I remembered again that life is sweet and sour at the same time. The good things and the hard things work together to build a life we can truly savor. Today’s heartbreak is soothed by the sweetness of the memories I brought with me from the time before things changed. I wouldn’t know how to make a dinner like this without a recipe to guide me had I not treasured the memory of munching on Banzai Burgers with my best friend all those years ago. I browned the beef and sautéed garlic and transformed leftover pineapple into a midweek meal that made me miss her like crazy. Then I sat down to the table and scooped out big portions to my girls who ate it up with the sort of gusto that reminded me of the way Molly always did. Banzai Burger Bowls redeemed the memory of those untouched days when gluten and allergies were yet unknown and made it a beautiful moment to treasure instead of a memory to bemoan, and suddenly, surprisingly, I was thankful for all of it.
God does that, you know? When we hand him all the smashed up, broken pieces of our disappointed hearts and let him make them into something new, he does–and what he does with it is good, because he’s good. All the messed up, unfair, heartbreaking circumstances of our lives transform into something beautiful, when we love him and trust his heart for us (Romans 8:28).
And because of that, nothing is ever wasted.
So here I am still recovering from the worst flare up of my life that turns out to be the biggest blessing I could have asked for. The results of the test are not what I had hoped for, but they handed me the answers I need to move forward from here, and friends, that is an invaluable gift indeed. I don’t have to wonder anymore, and I’m thankful for that against all the insufferable odds.
Blessed relief, the medicine is beginning to work. My body is responding to treatment and I see light flickering on the other side of the dark tunnel through which I have walked through for over 20 years.
I’m not well yet, but I’m on my way there. The irrepressible love of food isn’t wasted in my upside down kitchen. Good things happen here too–like Banzai Burger Bowls.