Kieva is an adventure seeking, Colorado based fitness and wellness coach. Binge watching The Office, and taking her Shih Tzu on long walks are just a couple of her hobbies. Kieva also enjoys working as a full-time, school-based Speech Language Pathologist providing therapy services to blind, and deaf-blind populations.
Name: Kieva Reynolds
Company: Good Gut Bugs
Industry: Health and Wellness
I’m originally from upstate New York and currently reside in Colorado. I am a full time Speech Language Pathologist specializing with blind and deaf-blind populations. When I became sick I realized the value of good health and what “health” means. I quickly learned that emotional well-being is not something to put on the back burner. It sounds simple but it’s something that happens all too often. It is important to find balance in our lives. Recently, I started my own business as a fitness and wellness coach. I am on a mission to get my strength back but more importantly help others on their journey. If anything positive can come out of this experience, it’s that other people might find comfort in knowing they aren’t alone.
Tell us about your journey with TRAPS. What was the path to diagnosis? What does “living with TRAPS” look like for you?
I was living my best life. I was active. I had big ambitions to climb Mt. Rainier in 2019. That was 8 months ago when one day it hit me. I suddenly had a fever, and my joints hurt. I was keeling over from bursts of pain in different areas of my abdomen. At the time I thought it would be an easy fix. That I’d go to the doctor and they’d have an answer; that there would be some “magic pill” that would make me feel better because that’s what I’ve always known. I had no idea that my journey had just begun. Eventually my symptoms grew to include chronic fatigue, faintness, loss of appetite, headaches, muscle cramps and spasms. Getting off the sofa to get a glass of water was an arduous task. The physical pain and discomfort was grueling. I was unable to sleep at night, and for the longest time I was lucky to get four hours of sleep even while taking melatonin supplements. It felt like my life was unraveling and that this would be my new normal. I had to find a doctor who would listen, see multiple specialists, deal with insurance, work my full-time job, and get myself to the Mayo Clinic. The entire time I was battling physical pain and depression. The thought that this would now be my new life terrified me. The thought that this would now be my new life terrified me.
As a young and otherwise healthy individual, I never needed a doctor until the day I became sick. Getting settled with a primary care physician was a challenge. It took months to be accepted as a new patient. Finding a doctor who would listen and take my symptoms seriously was an added challenge. I had a lot of doctors who were dismissive about my symptoms before I found one who realized something was wrong. I received a lot of mixed messages. I was told a lot of things that made me feel as though I didn’t know my own body. At times it seemed as though my doctors were skeptical about my symptoms. The first doctor I saw told me to take iron supplements and see if I felt better in 1-2 months. Time and time again I felt discouraged after my appointments. Amid the confusion, lack of communication, and all of the questioning, I couldn’t help but think “Could this all be in my head? What is wrong with me?” Luckily, after much persistence I’ve found a team of doctors that have been excellent in managing my care. While my symptoms were important, the only true objective measures that my doctors had were signs of inflammation including elevated platelet counts, elevated C-Reactive Protein levels and persistent fever. These were all general inflammatory markers and they showed that my body was experiencing inflammation, but not where or why. For the longest time I was labeled as having a “Fever of Unknown Origins”. Doctors acknowledged that more intensive testing was needed but the etiology was still a big mystery.
After 5 months with no answers and worsening symptoms, I met my breaking point. I was terrified, and depression hit me even harder. Coincidentally around this time, PBS had produced a documentary about The Mayo Clinic. I cried while watching it, not because it was sad, but because it instilled a sliver of hope. I had a feeling that this could be my silver lining.
I called The Mayo Clinic on a whim but suddenly found myself applying as a new patient. I went for it. I called The Mayo Clinic on a whim but suddenly found myself applying as a new patient. I went for it. A few days later, I learned that they accepted my case, but they weren’t able to see me for another three months. This meant another wait, but I called every day to check for cancellations, and I got lucky. They were able to see me the following week. When I hung up the phone I cried tears of joy. Finally, I was on my way to find answers, and I was the most hopeful I had ever been.
My mother and I traveled to the Mayo Clinic in Rochester, Minnesota. While there I saw specialists and underwent testing nearly every day. No time was wasted, and the doctors were compassionate and genuinely interested in finding the right diagnosis and treatment plan.
While there, my Rheumatologist mentioned another test we could consider; it was genetic testing for a variety of Periodic Fever Syndromes. Although, he warned that insurance may not cover it, and that the diseases are so rare it’s unlikely the test would yield any new leads. The ball was in my court, and I said, “Yes.” I traveled so far and wasn’t about to say “no” only to wonder “what if?”
About four weeks later, the results came back and showed that I am positive for an atypical mutation the results came back and showed that I am positive for an atypical mutation that is associated with Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS disease). This mutation, along with my symptoms, and our ability to rule out all other etiologies are what lead to my diagnosis of TRAPS disease.
TRAPS is an extremely rare chronic illness that’s the result of a genetic mutation. It is estimated that 1 in every 1 million individuals has the disease. Many remain undiagnosed as medical mysteries or are misdiagnosed. TRAPS disease consists of flare ups with persistent fever and accompanying symptoms.
It took seven months to receive my diagnosis. I saw dozens of specialists from a variety of disciplines including gastroenterology, infectious disease, rheumatology, pulmonology, cardiology, neurology, dermatology, and otolaryngology. I underwent a total of 100+ blood panels, a dozen radiological tests (including different MRIs, CT scans, X-rays, and PET scans), and several procedures.
The Mayo Clinic was the catalyst for helping me find peace in knowing what I’m living with. The doctors truly collaborated and spent sufficient amounts of time reading every test and every note that was written.
One thing I learned during all of this is that I am the expert on my body and I need to feel confident in that. One thing I learned during all of this is that I am the expert on my body and I need to feel confident in that. I knew how my body should feel, and I knew that something was wrong. I trusted my gut and I sought second opinions to confirm that I was heading in the right direction.
Now that I know what I’m living with I am ready to tackle it head on. I’ll need to be mindful of what triggers my flare ups, and I’ll need listen to my body. Currently, I am learning about different treatment options and am eager to find one that works. About a month ago, my doctors prescribed me a burst of cortico-steroids hoping it would end my flare up and eliminate my symptoms. The cortico-steroids lowered my inflammation and fever but not completely. Soon, insurance pending, I’ll be on a long-term injection medication.
How has living with a chronic illness affected you at work? How do you work through the hard days, and make sure you take care of yourself?
In the beginning, work was the perfect distraction. It kept my mind occupied and I was able to get through my days ignoring the physical and emotional pain. Choosing to ignore what I was going through was one of my biggest mistakes. Choosing to ignore what I was going through was one of my biggest mistakes. After a while, the hard days were piling on, and I was so encumbered by physical pain or frustration that I’d have to close my door so I could sit there and cry. I’d have to “sit out” and wait for the bursts of abdominal and joint pain to pass. There were also many days where I couldn’t think. It was like my basic cognitive functions were being impacted and it was completely out of my control. I’d be too exhausted or faint to work through the day and would need to leave early. I tried to stay for as long as I could and hated leaving. I knew that every time I left work I would fall further behind. I was barely staying afloat. As much as I tried to stay at work it would get to a point where I was physically unable to. Over time, I learned that I had to change my mindset to “I need to take care of myself before I can take care of others to the best of my ability.” I am extremely grateful for my employer. They were empathetic to my situation and did everything they could to help. They checked in often and helped to get me enrolled in different programs (e.g. donated leave program, family medical leave, short term disability). By enrolling in these programs I was better able to focus on myself.
What advice do you have for people living with a chronic illness? What are some resources you’d recommend for them?
Be an open book and talk about it. Be an open book and talk about it. All my life I’ve always had a “do it yourself” and “go get ‘em” attitude. It’s served me well, but it has also been one of my biggest flaws. When I became sick I spoke about my troubles with very few people. I felt like I’d be a burden and that “No one wants to hear about this stuff”. I didn’t want to be “that girl” and thought it would be easier and cause less worry if I kept quiet to myself. I couldn’t have been further from the truth.
Ultimately, the people in your life care about you. If you don’t share your story, the pain and anguish will bury itself deep and resurface later in a way that only causes more pain. I found that the more I talked about it, the more desensitized I became from the associated fear and frustration of having a chronic illness. You start to process and own what you’re up against. I put a lot of trust into my friends and family and now, even strangers who share a similar journey. It opens the door to learn from others. For me it’s been a cathartic experience. Once I was open in sharing my struggles, people were there for me every step of the way. They taught me that it’s OK to cry and that it’s OK to ask for and accept help from others. Don’t be afraid, allow people in. You’ll be surprised by their longing to leap into the chaos with you.
Practice mindfulness: This will look different for everybody. Do what helps you get in touch with your inner-most self. At the end of each night I write down one thing that went well during the day, or one thing that happened during the day that I am grateful for. This has helped me re-orient my thoughts when my thoughts were predominately negative.
Maintain a log of your symptoms and save hard copies of all medical records: One thing I learned was that adequate communication between medical facilities is hard to come by. As a result, I printed all my lab results and reports from my online patient portals and kept them in a folder to make it easier for my doctors to see what testing was done and what to do next. In addition to this, I purchased a symptom log book from Amazon called “My Pain Monitoring Journal”. In it I can document my symptoms, including the day/time and duration, as well as where my symptoms are occurring. Every page has different profiles of the human body, so I can write an “X” where my pain is occurring. It is hard to remember everything especially when you need to repeat it to dozens of different doctors. Maintaining this log helped me answer their questions and monitor the progression of my symptoms.
Get 2nd opinions and remember you are the expert when it comes to you and your body: Doctors are wonderful and ultimately want to help, that’s why they do what they do. I am fortunate to have found my team of doctors here in Colorado, and at the Mayo Clinic, but it was a journey to find them. I felt that many of my first doctors were dismissive, or their communication was poor, or I felt like I was being “put on the back burner” being scheduled for months out. You need to advocate for yourself and do your research. You know your body the best and you are the expert. Ask questions even if you think they are “a stretch”. Ask questions even if you think they are “a stretch”. Your doctors are there to help you find the answers you need. Trust your gut and if red flags are raised be sure to ask the tough questions and don’t hesitate to ask another professional for their input.
Treat Yourself. You deserve it: I was always so focused on my appointments, bills, and “all of the crappy stuff.” I was forgetting to take care of myself. About once a week I’d have a “spa day”, I’d run myself a bath, bust out my bath salts, candles, relaxing music, fancy face masks, and paint my nails. It all helped me feel relaxed and more “normal”, like I was a human again.
Improved diet may help: As my symptoms worsened, one of my doctors suggested that I try an anti-inflammatory diet to see if this lifestyle change would help me feel generally “better.” After doing some research, I decided to follow The Plant Paradox eating program. The focus is on restoring and maintaining good gut health. At first, I was skeptical but now I am reaping the benefits and see the value in changing dietary lifestyle for the better. Shortly after starting, I noticed that I had improved mood, and increased energy (even for being sick). In three months I lost 30 pounds returning to my normal healthy weight. I’ve been so successful that I’ve decided to continue the program for the long haul. My business Good Gut Bugs on Instagram is a platform where I share recipes, wellness tips, and fitspiration. Through this, I found a wonderful and growing community of people who motivate, inspire, and are excited to learn from each other. Many of whom have wellness journeys of their own and live with chronic illness. It’s been a wonderful community to be a part of and I am astounded by the impact that the Plant Paradox program has had on my body and well-being. The craziest part? I am eating like a champ! When I hear “diet” I want to throw up my elbows to protect myself. I’ve tried “diets” in the past, and I’ve failed. I think of The Plant Paradox program more as a lifestyle. It’s been easy for me to replace foods and ingredients with ones that are less inflammatory and promote good gut health . I’ve made all sorts of dishes, including ones that feel “bad” like fish fry, onion rings, ice cream, mug cake, cookies, triple cream brie, pizza etc. Committing to this lifestyle has been one of the greatest decisions I made, especially while being sick.
Find the things you CAN do: When I became sick eight months ago there was so much I couldn’t do. I was known as the rock climbing, and outdoorsy mountaineering girl. When my flare up occurred, I was no longer able to participate in the activities that I was passionate about. The things that were a huge part of my life were no longer an option for me. For the first few months I moped around and simply did nothing but lay on the couch and binge watch TV series to stay entertained. My body was in too much pain to do anything else. Eventually I became bored and miserable. Don’t get me wrong, I LOVE a good TV series but after a while I felt like a useless lump. What did my life become? I took up new hobbies and this seemed to help. I stepped outside my comfort zone and figured that doing anything different would be better and more proactive than what I was doing currently. My grandma works on puzzles every Monday and this inspired me to give it a try, I thought maybe I’d enjoy it…to my surprise I did! I started puzzling to keep my mind occupied and busy. I’ve even recruited some friends and family for a puzzle swap! I started reading self-help books, crafting, and sharing my experience with my new eating program on Instagram.
Music is powerful: I created a playlist on my Spotify account full of songs that I could relate to and songs that kept my spirits high. Some of my go to songs were “Rise up” by Andra Day and “Nearly Morning” by Luke Sital-Singh. Listening to my playlist was a positive way for me to reconnect and feel inspired. Listening to my playlist was a positive way for me to reconnect and feel inspired.
The Mayo Clinic is a viable option: At first, I had a preconceived notion that The Mayo Clinic “Couldn’t possibly accept my insurance” and that “My situation probably isn’t serious enough, there’s no way they’ll accept me as a patient.” My biggest regret was not calling The Mayo Clinic sooner. They accept most insurance, and they did not waste any time getting to the bottom of my diagnosis. They explored ALL possibilities, no matter how “far of a stretch” they seemed. Everyone I interacted with (even those from different departments like scheduling and billing) were genuinely empathetic and incredibly thorough. I am still paying medical bills, but the billing department at The Mayo Clinic recognizes the financial burden that their patients have and are flexible when it comes to payment plans. I am incredibly grateful for this institution.