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Living with My Medical Mystery

And What I've Learned

By Sarah GomboldPublished 7 years ago 4 min read
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The symptoms started the summer of 2015. My sleeping was getting worse; I kept waking up every few hours and no matter how long I slept for, I was still tired. It was only until my doctor noticed my thyroid looked enlarged did I start testing for medical problems. Since thyroid problems are already in my family, they tested the thyroid antibodies and the results came back slightly elevated. Then my doctor suggested I get a sleep study to test for sleep apnea since that is also already in my family. Nothing; the test was normal. With nothing obviously wrong, my doctor recommended a gluten free and dairy free diet and various supplements to improve my energy. And with that, I went off to college. Right after I went to the campus, the nausea started. Whenever I ate, I would get waves of nausea. I would spend a majority of the day so nauseous that walking made it worse. It was almost unbearable.

Within three semesters, I had transferred from my original campus to another and then, again, to online so I could stay at home. My energy was so bad that I could barely handle an entry-level college course; I rarely left my bed and I was sleeping at least 11 hours every night. My depression was at an all-time high and I barely talked to my best friends. It wasn’t until November 2016 that my family and I made my health the leading priority in the house. I took a medical leave of absence from school and we went to the first of many doctors who did a myriad of tests. Within months, it just became appointment after appointment and test after test. There were more doctors with specific specialties. I went to internists and gastroenterologists and nutritionists. I had an echocardiogram, an abdominal ultrasound, an endoscopy, and a colonoscopy. I was tested for pregnancy, HIV, hepatitis, heavy metals, Lyme’s disease, thyroid problems, hemochromatosis, autoimmune diseases, Wilson’s disease, adrenal problems, cortisol discrepancies, and so many others. I had an entire vitamin panel done. To test for celiac disease, I stopped the gluten free and dairy free diet. I learned I was a hemochromatosis carrier and that I have a fatty liver. I learned that I have low vitamin D levels and my cortisol is completely backward. Other than a few other tests, such as glucose and CO2 levels being low, everything was normal. I even had one doctor tell me I was a completely healthy young woman with some sleeping problems. It’s clearly more than that!

At the beginning of this process, I wanted medication to help counteract the symptoms. I had almost two dozen prescriptions within four months and, finally, I have an antidepressant, a sleeping pill, an anti-acid, and two pills to reduce nausea. A new doctor recommended seven new supplements to help with the debilitating fatigue and nausea. In July 2017, the same doctor also suggested the Ketogenic diet to help improve energy.

A few weeks ago, I went to the University of Pennsylvania clinic to have a team of new doctors to help me figure out my medical mystery.

Living with this unknown disease is exhausting, apart from the symptoms, as well as depressing. On some days, the symptoms are so severe, I can barely get out of bed or eat anything. Thankfully, there are good days too, although they are few and far between. On these days, I can do things like cooking or cleaning or, even, reading. On these days, I can be more active. Most of my days, I stay isolated in my room, watching TV or doing other dull activities. When friends come by to see me, I feel awful that I’m stuck in this period of unknowing while they are enjoying and living life. Living with this unknown disease, I feel completely alone because of my symptoms. I don’t know anyone who’s living with the same unknown as I am.

Contrary to these awful feelings and isolation, I have found the values of my experiences. I, now, know the importance of friendship. I, now, know the importance of activity; I miss being busy and being stressed about what I need to do. I, now, know the importance of sleep. I understand of valuable mental health is and how sleep connects to positive mental health. I, now, know that living with this unknown, I can empathize with others who feel that they are stuck. These past few years of suffering have inspired me to help others who feel that way I do now. While I am writing this, at this moment, I still don’t have a diagnosis but with my new-found knowledge and motivation to help others, I feel as though I am coming to the end stages of my medical mystery journey.

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About the Creator

Sarah Gombold

I'm a 21-year-old student who loves writing, reading, photography, and music. I have 2 dogs and a cat and they are my life. I have been writing since I was a young child. Most of my writings are about my life. Enjoy!

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