What’s in a Name: My 3-Year Wait for Health

Preface (or Disclaimer)

There is a growing body of research, testimonials, tweets, blog posts, and conversation about chronic illnesses. I am grateful for the worldwide embrace of chronically ill people and the efforts being made to find solutions. For all of the exposure, though, chronic illnesses still remain elusive in daily life. They are often silent, and invisible. Knowing that, the purpose of this post is to share my story of illness with you. It is not really an uplifting or resolved story (that will come later as I figure out how to communicate the things I’ve learned and the things I’ve struggled with). If you’ve read some of my other posts, you know that a lot of life-stuff has been going down over the past few years. It has been simultaneously awesome and awful; I’ve grown a lot and learned so many things about health, love, community, empathy, and myself. While I believe people are whole beings, this post is a uniquely narrow snapshot of my chronic illness journey in almost excruciating detail, including other life events only to mark time. This is partly intentional, as I have so much to tell and only so many words reasonably available in an audience-conscious blog post. It is partly unintentional, as I don’t quite know how to capture the emotional weight of my 3-year struggle for health without turning into a blubbering mess in the middle of a coffee shop (I mean, it’s happened before, but I try to limit it to once per coffee shop). Regardless of how completely this post conveys my experience, I find comfort in sharing my story and learning of others’ experiences. I think health, like many things, is a communal effort. I pray you find comfort in your own journey.

My Story Begins, Fall 2015

Three years ago, I stopped pooping. Yep. It’s probably as gross as it reads. Anyway, I learned my stomach was entirely compacted with processed food — refusing to take any more food in while refusing to let the slowly decomposing stuff out. My body stayed in constant pain, my bones ached, my sides had sharp pains, my brain “clouded,” and my entire body bloated so thoroughly that I couldn’t actually wear any of my clothes. I had just entered my sophomore year of college and I could no longer get out of bed most days, much less show up to classes. I moved off campus and moved back in with my family.

Eager to get on with life and go back to classes, I sought treatment. My doctors were pretty confused. First, they sent me home with Miralax and magnesium citrate. Then, they sent me home with… more magnesium citrate and ordered a blood lab that showed nothing. Finally, they ordered a CT scan of my stomach that showed nothing, and sent me home with more magnesium citrate. My typical week began to hinge on when I drank magnesium citrate so that my stomach could finally empty. (If you never have to drink magnesium citrate, you are a winner. It stealthily assaults your tastebuds with something similar to the flavor of diet sprite that suddenly turns salty, harsh, and unbearably dense like Alka Seltzer in too little water.)

Approximately three months after my journey began, I scheduled another doctor visit to see if we could find anything new. It felt like a last-ditch effort, but I went because… what else was I going to do? My doctor and I discussed my symptoms over and over – she was really patient with this process, determined to offer some solution. Finally, she reread my various lab results and noticed that not even the CT scan inspected my gallbladder. My symptoms were not very common to gallbladder diseases, but knowing the pain I experienced, she ordered a HIDA scan to monitor the function of my gallbladder. The HIDA scan takes about an hour, watching your body process a radioactive tracer that sometimes induces the symptoms you experiences with gallbladder pain. The scan revealed that my gallbladder had simply stopped working. I was elated to finally have an answer, and eager to have it removed!

About a month after we got the results, I underwent laparoscopic surgery to have my gallbladder removed. My gallbladder came out as a perfectly pink, pear-shaped organ. The only real issue with my gallbladder was that it functioned at 7% thus causing the incredible pains in my side. I was relieved to have it out. Even the pain of healing from surgery did not rival the pain I experienced with my gallbladder. In the following month (December), I prepared myself to go back to school in the spring semester, ready to  resume my life as it was after being mostly bedridden for five months. Honestly, those five months were some of the loneliest, most anxious months of my life. I thought the rest of my life would be spent in pain, in bed, in a mental fog.

The Story Continues, Spring 2016

Sadly, while the sharp pains in my side were blessedly absent, my body still ached, my stomach still didn’t work, and my brain was still really foggy. I continued to bloat beyond the capacity of my clothing (some days I actually thought I would explode like the giant worm in Tremors). A month into the new year, I went back to the doctor and back to the drawing board. Within another month, I visited a gastroenterologist who diagnosed me with IBS because I was clearly constipated but she didn’t see anything unusual. I put school on hold for another semester and started working full-time at a medical massage clinic, and learned a lot about holistic medicine. I found out how to massage my own stomach – something that makes me look an awful lot like Winnie the Pooh, and I learned about the necessity of vitamins and probiotics.

Later that summer, I was approached to start a new job in the fall. While I was sad to leave such a health-conscious and uplifting work environment, I was excited to try the position. I was feeling better than I had since all of my illness started, and believed I was on the mend. I could even make it through most of a day! However, a few months into the position, I began missing 1 – 2 days every two weeks. My health and energy nose-dived again, and I spent that winter attempting to adjust. I incorporated a ultraviolet sun lamp that we call my Happy Lamp to ensure that I was creating enough of the right chemicals to stay awake. I plopped the thing on my desk and used it religiously (to go with the angelic glow it cast on my face). My energy levels improved, but I still struggled with the pain and swelling. I still struggled to have enough energy to make it through a day or keep my brain from being “foggy,” again. I revisited my physician a few times in the ensuing months, checking iron levels (they were great), Vitamin D and B levels (they were also great), looking for mono (negative), and everything else under the sun. Even a solid probiotic merely held the worst of the symptoms at bay.

With my health forecast looking down, I attempted to workout again (as a dancer and marathon runner, taking a year off from exercise and spending most of that bedridden or sedentary was killing my morale). It. Was. Hell. I mean, I had a great workout partner on campus who would go to the gym with me no matter the time of day, and I lifted what I could, when I could, but I was exhausted. My muscles were finally getting much needed attention, I could keep a decent pace on a run again, and I always needed a nap (or 18 hours of sleep) after working out. I could do gentle yoga and need a break. It’s hard to explain… I felt good working out (I didn’t have uncharacteristic shortness of breath, paling, or dizziness), but I always felt like my whole body had been drained of every last bit of energy and I was a walking zombie. I couldn’t think coherent thoughts, or even focus my vision. After 7 months of working out, I finally eased up, settling for an occasional walk when I felt too restless.

Learning to Live in a Different Body, Spring 2017

By the following spring, I was back to believing that this would be the rest of my life. I also began to think that my illness was all in my head – with no diagnosis beyond IBS and no reliable way to improve my condition (or treat symptoms), I was pretty bummed. Showing up to a job I loved became a chore. One day, a coworker suggested the Whole30 elimination diet. This gave me hope, so my physician and I started monitoring my diet to see if I had developed any food intolerances. By the end of May, I’d eliminated legumes, dairy, and grains (not gluten) from my diet and they refused to reenter my diet pleasantly. In another few months, I’d also discovered the unpleasantness of sugar and eliminated meats.

This sounds awful, I know. I was, however, so entirely happy to have days when my stomach didn’t hurt and my body didn’t swell beyond what my bathrobe could cover that I embraced the change. I got really creative with potatoes, squashes, tree nuts, cassava flour, and veggies. Surprisingly, I still had a lot of foods available to me. We call these “Kelly-friendly” because there is no other intolerance name or diet name for it (I am big on names). I even discovered Holy Rollers‘ energy donuts (made with dates and coconut)! My friends, mom, sister, and co-workers were great about welcoming anything that would make me healthy. I transitioned into a different position at work as a healthier woman than I had been in a long time. I coped pretty well, avoiding those foods. I would have an off day every few weeks, and I certainly needed to recover if I ate anything on the “nope” list, but I could finally wear clothes and eat without sharp pain! I had bowel movements every three days instead of every week. I attempted to workout again, thinking it would improve my heath, but continued to experience extreme exhaustion after even light exercise. Heck, vacuuming my house felt like a session of P90X. I cut my losses with exercise and decided not to rely on my body for strenuous efforts, taking the good health where I could get it.

By January of 2018, I had a pretty good system for staying functional. I had emotionally come to terms with not improving beyond where I was, and decided to make the most of it. I enrolled in a few classes around my work schedule and hoped for the best. The best was, perhaps, a naïve thing to hope for. A month into the semester, I had to have my wisdom teeth removed. Not a big deal, but both the antibiotic and the pain medication stopped my stomach in its tracks. I was suddenly back to where I had been before my gallbladder surgery, with stomach pain, swelling, brain fog, and the works. I couldn’t go to the bathroom for weeks at a time. By the end of the semester, I had dropped to two classes, racked up a sizable medical bill, and eaten through my PTO at work. I learned a valuable lesson about taking medication without thinking about my whole body. Had I talked to my dentist before the procedure, I could have avoided the sharp downturn in my health. I learned that my body does not respond to things the way it used to. I am so glad I learned that lesson with something as simple as wisdom teeth removal.

Rounding the Final Bend, Summer 2018

With my normal-for-me health restored, May 2018 saw new work projects and office changes. It saw my friends graduate college, once again reminded how behind my health had put me, and left me determined to find more solutions. My body, I think, agreed, and forced me back into the doctors office with a new wave of health issues. By the end of May, I was experiencing symptoms I hadn’t had, and my existing symptoms were worsening (again). I began to swell randomly, my skin got rough, my hair became stripped and somewhat brittle. I would become nauseous anytime I ate — something I had been blessed to avoid until this point — no matter how empty my stomach was. My joints ached so badly, I would wake up in pain in the middle of the night. I had migraines for the first time in my life. It felt like I was living with a perpetual flu.

Within a few weeks, the scary symptoms kicked in; my hips would randomly stiffen and swell. I couldn’t walk even a few feet. My neck would lose mobility and I couldn’t turn my head to the side. My eyes had so much pressure behind them, I sometimes couldn’t see. My fingers would lock up and I couldn’t bend them (this would limit my ability to type, making work impossible), and my hands would shake. My limit for reliably being awake was four hours… Four hours out of twenty-four. I had plenty of motivation to seek answers, and a new primary care physician to join me on my journey. Within a few weeks, we ruled out autoimmune disorders and arthritis; I had an ultrasound of my entire digestive system that ruled out scary masses and organ failure. In the present, we are still looking for answers.

So What? What’s in a Name?

So, you’re all caught up! I recently had allergy testing done. Per some “universal constant,” there were a few complications with my reactions, so I am waiting for blood work to confirm results of the test. I may have answers, I may not. I still avoid the foods that bother me, take my probiotics, and I’ve started consulting with an herbalist to increase my nutrient intake as more and more foods get crossed off the “yep” list. A close friend recommended a silk worm enzyme for pain that I take religiously in the mornings (it is really effective for me, but has to be taken on an empty stomach) just to get out of bed. Every so often, I have really good days that remind me that I am not crazy, but my overall health is progressively declining. For a long time, I didn’t know or believe that I had a chronic illness, but three years later, I don’t know what else to call this progressive health decline. I hold out hope that I will know what to call it, soon, though! Finding an answer to my health conundrum means I can treat my symptoms — and maybe even the cause — more effectively. A name for my illness will allow me to effectively communicate what is going on in my body to new friends, new doctors, and myself. A diagnosis is something I can share with a community of other people with similar diagnoses — I can support them, find solace, and share solutions.