The Butterfly in my Throat : The Beginning

My thyroid

"It's an easy disease to live with." I’ve heard that phrase more times than I care to count. Problem is, Graves’ Disease has been one of the biggest hurdles in my life. A hurdle I’m STILL trying to get over 7 years later. 

Graves’ was lurking silently in my body. I had only one symptom of it... occasional heart palpitations, which I believed were genetic. They weren’t severe. I barely noticed them, and all the females in my family have heart palpitations and heart murmurs. It was never a cause for concern to me.

The Episode.

Going back to June 2007, I was living on my college campus south of Boston and working at the Admissions office. I visited the beach after work everyday. I spent a lot of time with my friends. I was rocking an adorable haircut. I felt good. I was motivated. 

June 2007

Father’s day weekend approached. I decided to leave that Friday and spend the weekend at home with my family in CT. I couldn’t have picked a better day - it was sunny, warm, perfect. In the car, I was listening to music and singing - my own private concert. About 45 minutes away from home, I started to see spots in my peripheral vision. Black dots with bright white centers. I  experienced this once before as a kid: a migraine. It was a severe migraine, so naturally I got nervous. I quickly pulled over onto the median and called my family to let them know about the impending migraine. They assured me I would be fine. I continued on, slowly in the right lane. I went blind in my peripheral vision temporarily. About 15 minutes later, the spots went away and my vision came back. 

I was nervous, but I continued to listen to music and sing to calm myself down. The strangest thing happened though. The words coming out of my mouth weren’t in English. They were some kind of gibberish. My heart started pounding... what is going on? I tried to pray for help, but the words wouldn’t come out. 

I don’t remember anything else from that drive. I do remember pulling into my driveway and forgetting how to put my car into park. I think I fell out of my car. I think I crawled to my front door. I think I crawled up my stairs. My family was waiting for me, astounded by the intensity of my "migraine". My speech came and went. I remember specifically telling my Mother not to bring me to the hospital. I did not want to sit uncomfortably in an emergency room over a bad migraine, just to get some Motrin thrown at me and sent home. I started to get a splitting headache. I thought perhaps this episode was a caffeine migraine, so I drank 2 cups of coffee. Then, I thought it was dehydration, so I drank a ton of water. No medicine calmed this raging thunderstorm in my brain. 

I remember I laid on my bed, my sister at my side. I kept asking for "watness," or water. I remember being oddly fascinated that we owned the same dress from "Hob Tobba," or Hot Topic. I remember my gibberish was making me laugh, although I was told later that I screamed and moaned in pain for a couple of hours. I don't remember this. Later in the evening, I was exhausted. My speech had returned, the headache and pain had subsided, but it left me wretched. 

When I woke up the next morning, symptoms of the Graves’ disease started to manifest themselves. My eyes were huge and bug-eyed. I remember my Mother sort of backed away from me when she first saw me. "Whattt... what is the matter? Why are your eyes so big?" When I looked in the mirror, I looked absolutely crazy, rivaling the mugshots of psychopaths everywhere. 

I felt “off.” Since that day, I've probably used this word as a side effect hundreds of times. I feel “off.” I wasn’t thinking straight, I was acting strangely and really goofy. Something wasn’t right. I assumed it was just post-migraine symptoms. I returned to my college campus, but my family was uncomfortable and wanted me to be checked out at a doctor. I was "off" that whole week, but I was 20 and somewhat reckless. I just wanted things to be normal and in my control. I ignored the pleas until I received a teary phone call from a family member begging me to go to the hospital. They were concerned I had suffered an aneurysm. I went - but not without calling the emergency room first to try and convince them that I was fine. 

I had difficulty explaining my situation to the nurses. I didn't understand them and I couldn't articulate well, though they said I sounded fine. It was 5 days after the episode. Whatever it was, they couldn't exactly pinpoint it. To my absolute frustration, I was kept overnight because I had a resting heart rate of 125-145. I had some scans of my brain and chest, blood work, 3am vitals check - which made me furious. I waited around the next day for a doctor. I was so jumpy and extremely fidgety- so much so, I accidentally unscrewed my IV and blood started to pool out of it. I became THAT obnoxious patient who calls the nurse every few minutes, frustrated that she has not seen a doctor yet. 

Later, I fell asleep and I woke up to a doctor talking to me about my condition. I didn’t hear a word she said. The nurse came in and gave me the rundown. I had hyperthyroidism and the episode was probably a mini stroke or a T.I.A. (Transient Ischemic Attack), associated with thyroid storm. They gave me a beta blocker, some information on specialists and sent me off. What 20 year old has a mini stroke? 

I did the thyroid uptake test, which was remarkably high. 69.9% (The normal range should have been 8-25%). The scans showed a slightly enlarged thyroid gland. I was put on a beta blocker to keep my heart safe.

I felt toxic, like my insides could not function. I struggled at work. I remember going into the supply closet and not remembering why I was there. I felt like I couldn't do an ounce of work more or I would probably die. I remember the smallest tasks were so impossible to begin, never mind complete. I stared at my computer, barely able to move my fingers on the keyboard. I felt like my body was shutting down, freezing up. After some guidance, I decided to go back home for the remainder of the summer. I threw my belongings in the car and went home. I had no energy or strength to pack, so my things were just haphazardly strewn everywhere in my car.

The New Symptoms.
It was a difficult summer. I was in bed for most of it. I lost a lot of my short term memory. I'm a person with an exceptional memory, and of all the things that happened to me, that hurt the most. I was eating 11 full meals a day but always felt hungry. I drank enough water for a pony, but always felt thirsty. I lost 30 pounds immediately and more each week. Bathroom trips happened every 10-20 minutes. Heart palpitations were incredibly common. I was always so hot and pouring in sweat. Red hot patches burned on my skin.

I became incredibly fidgety to the point where if something was in my hand, there was a good chance I would destroy it (I was the bane of the existence of water bottles, utensils, lanyards, pens, paper). I had difficulty holding things - OH! the innumerable spills. OH! the broken dinnerware. I wasn't allowed to hold pitchers of liquid anymore. I got migraines. My skin turned rough and full of acne. I got very weak and very lethargic. It took months for me to heal from cuts and bug bites. I started seeing eye floaters constantly. They were shiny, black and white, clear, and often millisecond twinkles of colored red, blue, white, and purple. The eye floaters linger to this day. I still see them more than the average person. 

The Diagnosis.
I remember the doctors' appointments. I remember the tests. The official diagnosis was on July, 19 2007. I had the "worst case of Graves' Disease ever seen." I had the "largest thyroid gland ever seen." My endocrinologist told me I had 18 months before I needed to make the decision to do a thyroidectomy (removal by scraping out all or part of the thyroid gland) or radioactive iodine therapy (a radioactive pill that is absorbed by the thyroid to inevitably destroy the tissue). It didn't look good. My doctors were scared for me. I was put on anti-thyroid pills, aspirin, a beta blocker, an anti-clotting medication, Vitamin D, Vitamin B6, B12, and Folic acid. 

I remember sitting in that chair, in that office, 7 years ago, thinking that it wasn't anything to get worked up about. I thought, "Okay God. I know You'll take care of this. I know You'll heal me. You have 18 months."

The progression of Graves' Disease: 

Feeling healthy in Spring 2007

Approx 1 week before the T.I.A.

After Diagnosis and 30lbs+ lost: August 2007

September 2007

The Lesson.
I felt like I lost a piece of myself back there. That pre-T.I.A. 20 year old is still trapped back in time. Disease has a way of chipping away pieces of your personality. Exhaustion gets in the way of everything. Symptoms and side effects are a daily part of life. After 7 years, I still can't accept that what I feel every day is normal. I never got used to it. 

This lesson took years to learn, but I realized I am alive and there's a purpose and a reason. By all accounts, I should and might not have made it home that day in June 2007. Life isn't chance. I'm alive for a purpose. You're alive for a purpose and it is special and beautiful.

Be blessed and be well,
J