Patient Story - Mara "Finding Answers"
"It’s hard to determine where my chronic illness journey begins. Is it when my mom passed away from stage 4 breast cancer when I was 8 years old - which would forever alter the trajectory of my life? Is it when I first turned blue and ended up in the emergency room while running during middle school PE class and was diagnosed with asthma? Is it when I was diagnosed with latent tuberculosis “accidentally” when I went to volunteer at my local children’s hospital when I was 16? My chronic illness journey has been the most non-linear, chaotic rollercoaster ride since it “began” over 10 years ago. For most of these 10 years I was collecting worrisome and at times, debilitating symptoms, but I was not able to find a matching diagnosis (neither in the singular nor the plural). There was a lot that couldn’t be explained for many years. Some of those symptoms have come and gone, some have lingered, and some have evolved into the diagnoses I have now.
At the start of the pandemic, my health took a turn. My usual chronic fatigue became so severe I could no longer walk my dog, and my virtual college coursework all got completed while I lay reclined on the couch. My chronic nausea, abdominal pain, and complete lack of appetite also reared their ugly heads. I felt like all my doctors had given up on me, and while feeling like I had nowhere to turn, I reconnected with one of my doctors at the Mayo Clinic in Rochester, Minnesota whom I had met 3 years earlier when I was diagnosed with POTS. Over a telehealth visit, I told her everything that was wrong and we spent nearly 2 hours on Zoom finally making a plan. For the first time in a long time, I had hope that we would find out what was wrong. It turned out I was severely iron deficient and my hematologist said I was weeks away from my bone marrow shutting down because of how hard it was working to compensate. This was our biggest clue that maybe these GI symptoms I had been having for 4 years were something more. It took 2 separate week-long trips to Mayo Clinic that summer to be diagnosed with Crohn’s disease. Finally, things started to make sense. I had an answer for my suffering, and most importantly, I had something treatable. I have been very lucky that my first biologic therapy put me in remission and I have stayed there since." Mara
Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job "being sick" entails, can feel like too much at times, and it is a weight you shouldn't have to carry alone.
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