Sunday, October 5, 2014

The Butterfly in my Throat : It Sinks In

I’ve only ever experienced hypothyroidism (under-active thyroid) for a month. With Graves’ Disease, the thyroid is overactive. A person with Graves' develops hypothyroidism after a major treatment to kill the thyroid. I’ve met many people with thyroid conditions with unstable blood work results: one month, their thyroid is overworking, the next month it's underproducing. A constant roller coaster treated with too many pills, too few pills, frustrated doctors, and a slew of new symptoms every month. My condition was almost always hyperthyroidism, with periods of regulated thyroid hormones.

I was in college in January 2008 when I tried to eat better and exercise occasionally. It’s really hard to live a healthy lifestyle in that environment, but I tried to be proactive. I started losing my appetite and started gaining weight. I gained 20lbs that month. I remember I loved Nature's Path Organic maple brown sugar pop tarts. I could eat one and be satisfied for most of the day.

"A thyroid condition is just another great challenge. It makes a difficult process even more difficult." -  Bob Greene, Oprah's personal trainer. 

Mild depression started to sink in, I found myself feeling anxious, I moved slowly, and there was never a moment when I wasn’t tired. I was still Vitamin D deficient. My doctor lessened my dose of antithyroid medicine and although nobody expected it, my thyroid levels did eventually balance out. 

Fearing death. 
From Winter to Spring 2008, the disease and the T.I.A. completely sank in. Despite having decent blood work and feeling as good as I probably could at the time, the “what woulda, coulda, shoulda,” was ceaselessly on my mind. Fear began to creep in slowly and then like an avalanche, wholly consumed me. 

Being alone was traumatic. My thoughts began to race, anxiety started to build up, and I inevitably was on the phone with my parents crying. I didn’t want to die alone. I didn’t tell anyone at school because I was embarrassed. I didn’t want anyone to know that I laid in bed every night, alone in my apartment and prayed, “God, please don’t kill me tonight. Please don’t let this disease kill me tonight.” When I woke the next morning, I was filled with relief. I had survived. 

Whenever friends came over, I relished the fact that I had people with me. A few times, I fell asleep while friends were in my apartment because I felt truly safe. A couple times, I slept in my friends’ dorms because the fear was so powerful. Still, I never told them that I was so frightened. I was plagued with nightmares. There were nights when I wouldn’t get a single second of sleep. There were nights when I would sleep for hours, missing all of my morning classes, sleeping through alarms. 

Whenever I went home to CT, I went to all kinds of churches, prayer meetings, and deliverance prayer services, hoping and praying for a miracle. Often, I left the meetings and services feeling better and hopeful, but soon after, I'd start to feel sick again and fear would set back in. Total disappointment. Sometimes, I left the meetings and services feeling frightened and nervous.

Doubt was my best friend, fear was my boyfriend, hope was a distant friend, and health was a celebrity I would never meet.

Obsessive-Compulsive Hypochrondriac.
Every symptom I experienced sent me over the edge and to the hospital. If thyroid levels are balanced, it's still possible to feel sick, weak, malaise, etc. There's also side effects to the medications as well. Problem was, I couldn't accept any symptom or side effect as a simple part of the disease. Everything had a reason and the reason was, "Death is coming." I became an obsessive compulsive hypochondriac.

One day, I was having trouble breathing and I drove myself to the hospital. I remember that drive begging God, "Please don't let me die. Please don't let me die." I sat in the waiting room and pulled out a notebook. I wrote, "All I ever do is wait." That became my reality. Waiting for health, waiting for a doctor, waiting for God, waiting for a miracle, waiting to sleep, waiting to relax, waiting to die. In reality, I had a chest cold developing and couldn't inhale fully, which caused me to have an anxiety attack. The idea that an anxiety attack put me in the hospital was ludicrous. I honestly and truly believed that something more serious had happened.

I remember this one time... I was at an appointment with my second endocrinologist. I said in a frustrated tone, "I keep getting a shooting pain in my neck. I thought my blood work was normal?" I expected a scholarly answer. He looked at me and said, "Uh. Yeah. You have a disease. It's all part of it. Deal with it." I was certainly humbled, though frustrated that my doctor didn't have the exact reason. I needed a reason for everything.

My 21st Birthday.
My 21st birthday - the mother of all birthdays, finally came. I had an appointment with my endocrinologist that day. It was a frustrating appointment. I had been slowly losing trust in my doctor. We didn’t connect at all and any of my questions or concerns were met with her quick biting comments. There was always something to be concerned about and bad news about the future. “If you don’t do what I say, you’ll get really sick…” I was diagnosed with Graves' for 10 months at this point and I still felt just as confused as the day I was diagnosed. I was still trying to figure out how to live with it. 

Once I left the appointment, I got into my car and cried in the parking lot. I said, “I can’t believe I spent my 21st birthday at the doctor. I hate this disease. Is this my future?"... Basically. 

Later that evening, I went out with friends for dinner. I wasn’t feeling great, but I pushed through it and tried to enjoy myself. All of my 21+ year old friends ordered a drink except for me. I wasn’t able to drink alcohol while taking my heart or anti-thyroid medications. I always felt this need to explain myself: Why I couldn't do something, why I felt a certain way, why at the last minute, I had to miss a get-together. It made me feel less human. It made me feel like an inconsiderate pest. 

We don't choose to get diseases. They happen for a million reasons. Diseases can either break us down to nothing, or they can make us exceptional superheroes. 
My 21st Birthday

Be blessed and be well,


  1. Hey! Finally figured out how to follow you :) Loved this post and it spoke depths to me. I'm currently waning in and out of the fearing death thing and it is so taxing on the mind. Sometimes almost unbearable. I'm so fortunate to know you, you give me hope and strength. I can't wait to read the next part of your journey.

    ps - way to rock that stache :p

    1. Thank you for following me, Adam. You are a precious, sweet soul. I think fear is the worst part of any disease. I still occasionally struggle with it, years later. Fear has a way of stealing our hope and our joy, which are both so necessary to get through the hardest symptoms. I have seen many people face their own mortality and disease with grace, dignity, and peace just by hanging onto hope. <3