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Learning to Live with a Chronic Illness

Updated: Oct 27, 2022

Yep, that's me. I had just finished my first Ironman 70.3, Ironman Augusta Georgia, and I was so proud. Getting to this race took a lot of hard work and grit. First, I found out that I panicked in water, not just open water, water. I hired a swim instructor, learned how to swim, then signed up for Luray Olympic Distance Triathlon to try out my new skills. Now THIS is when I found out the hard way that I panic in open water- an entirely new challenge from the pool. After some hard work, lots of tears, and what I felt were a few near death experiences in water (anyone who has ever panicked in open water know what I'm talking about-we're not being dramatic folks), I made it to Ironman 70.3 Augusta and finished my first 70.3 in 6:01. I hated that :01. I was ready to shave that second and more off of my time. What actually came next was something I could have never prepared myself for. I had already been diagnosed with Crohn's disease in this picture. It changed my life in many ways; my career, my lifestyle, and my awareness of the location of every public restroom in the DC area, but I was still able to live my life. Just a few months after this race though, my Crohn's disease got much worse. I continued to decline until I woke up one morning in January 2017 to run and collapsed just a couple blocks from home. I lost my ability to exercise, or do anything really, for two years. I suffered severe, debilitating pains, fatigue, GI issues...I couldn't leave my house most days because I was tied to the bathroom or unable to just keep my eyes open or get off the couch. Finally, I switched GI doctors and my new doctor felt that we should up my Humira to every week instead of every other week. It took some time, but I started to feel better. In 2019, I was cleared to exercise again and I immediately signed up for a race and joined Orangetheory. It felt good to be back. This is where the story starts to take a turn though and my Humira wasn't just keeping my Crohn's under control, I would later find out it was destroying my body. I had worked so hard to get my fitness levels back and had been training for Ironman 70.3 Chattanooga in February 2020 when I suddenly found myself in overtraining syndrome, something that is not unfamiliar to most athletes. Hey, we're overachievers. The problem was, I wasn't feeling better after rest and recovery. I couldn't exercise for weeks, I also couldn't see a doctor. The pandemic hit just as I was beginning to see real problems and I'm a chronically ill patient, I wasn't leaving the house any time soon. My symptoms began adding up; I had trouble breathing, I began getting numbness in my hands and legs, and I kept getting terrible chest pains. My GI symptoms started getting worse also. I eventually started exercising again but something was clearly wrong. I would start running and then my body would just quit. I was running slower to try and allow my body to go farther but it wasn't helping. This is when the heart rate spikes started. How does a runner suddenly get a heart rate spike to over 180?!?!? It went downhill from here. The numbness in my arm met with the chest pain and I was sure I was having a heart attack. I went to the ER only to be told I was fine. I continued with tests but nothing. I was now not able to run at all. I would try running very slow but could only go a few minutes then need to walk. I wouldn't be able to move for 2-3 days after even that sad attempt and I was in severe pain. Eventually I started getting sun rash, butterfly rash, and I started to lose my ability to walk. Now I'm sure it may be lupus but we're just emerging from a pandemic and each appointment I make is a 3 month wait--at least. At this point I've lost my ability to walk and have severe mood swings, suicidal thoughts, and I've started to get a strange twitch. I made an appointment with a neurologist and got in immediately. His first words-Why are you on Humira? This could just be a reaction to your medicine. I was floored and he turned out to be correct. How did I go 19 months, see 12 different doctors, 2 nurse practitioners, 1 physician's assistant, and countless RNs without anyone questioning the Humira? Advocating for myself got me to the neurologist but there were a lot of struggles, tears, pain, and unbelievable oversight of my medical situation to get there. This blog is about my learning to live with my chronic illness, advocate for myself when faced with doctors who insist nothing is wrong with me, and recovering from drug induced lupus and neuromuscular disorder when there is little known about this condition. I'm not alone and I hope this helps at least one person to better advocate for themselves and learn to live and thrive, while chronic.

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