The Butterfly in my Throat : Complicated Decisions

2014. 
My New Year's Eve was the same as it had been every year. I was alone, in my pajamas, sitting downstairs watching the Times Square ball drop on tv. I never felt well enough to do something on New Year's Eve. I pulled out a little notebook and began writing down things I wanted to change. 

I wrote a list of about 30 things, so I could look back at it on my next New Year's Eve and see that new things have happened. I wanted some affirmation that my life wasn't stagnant. I wanted to know that I wasn't under the governing power of my disease forever. 

I wanted to laugh more, I wanted to enjoy living a healthy lifestyle (even if my disease was technically keeping me from feeling healthy), I wanted to be a better friend, I wanted to pray more, I wanted to be a better person. At the end of the list, I wrote this, considering it already done: "2014 will be one of the best years you've ever had... And it will only get better!!!" 

So midnight came and went. I prayed. I teared up. I felt lonely. I felt disappointed that I wasn't out doing something fun, but I had my list of intentions for my New Year and welcomed the proactive feelings. 

Reboot. 
The first few days of my New Year were rough. I wasn't sleeping at all, and no amount of "sleepy time" teas, Benadryl, or melatonin were helping. I had committed to a healthier lifestyle, but I could barely stand up straight. I had been inactive for months because of the virus, but now that the symptoms had passed, I was physically exhausted. Since yoga had supported my body so much in early 2013, I looked for a January yoga program that could help usher in a healthier life, and help strengthen me, post virus. 

As mentioned in the previous post, I followed Yoga with Adriene and learned that she was releasing a yoga program for the new year called, "REBOOT: A 29 Day Yoga Experience." I fell in love with the title of the program. It was exactly what I was looking for. I faithfully stuck with the program for the month (skipping only a couple of days) and through the process, I learned how to nurture myself, especially with a disease that causes limitations. I was finally able to get control of my sleep cycle. I was feeling much stronger. I lost a little weight and for the first time ever, I was able to see actual defined muscle in my body.

I started incorporating more intermediate yoga routines into my life to challenge myself even more, physically. The practice helped me develop more discipline by focusing on my inhales and exhales, gave me a daily opportunity to let go of stress, taught me to stop allowing self-deprecating thoughts, humility by accepting where I was at the moment, and how to tend to my needs. Some days, I would not feel strong enough to handle a fiery practice and a gentle practice would suffice, or I would need a break altogether. It supported my new lifestyle and for the first time ever, I was able to take care of myself and stick with it. 

Diet & Exercise. 
My diet changed completely. For the first couple of months, I was experimenting with what worked for me and my body. After some time, I found a good balance of healthy grains, lean proteins, fruit, vegetables, legumes, minimal dairy, and I only used honey, maple syrup, and coconut palm sugar as added sugar. I avoided soy, processed foods, and gluten, however I allowed myself to occasionally enjoy a meal/dessert that didn't technically belong in my diet. It became my absolute pleasure to eat real, whole, healthy foods. I lost any desire to "cheat" or eat processed food. 

I began to exercise regularly, incorporating almost daily cardio into my life with some bodyweight toning videos. I lost a very small amount of weight, but not much. My endocrinologist informed me that I had been hyperthyroid for so long that my body wouldn't allow me to lose weight, as a way to keep me safe. Regardless, I was getting physically stronger. 

Longterm Damage. 
Despite feeling a bit better, my blood work was still the same. I still struggled with anxiety attacks, crazy headaches, intense brain fog, and I was still dosed up to the eyeballs on anti-thyroid medications. My doctor had enough. He began threatening to remove me from his care if I did not choose between a full thyroidectomy or radioactive iodine therapy. I asked about any other alternative treatments, but he gave me information from the American Thyroid Association and explained how most treatments that work for other diseases (for example, steroid treatment for Lupus) does not work for thyroid diseases. "We cannot reprogram these cells."

He explained the longterm damage of the disease. When he talked about the strain from hyperthyroidism on my heart, my eyes, my bone marrow, various other organs, I felt nervous. When he mentioned that the damage to my ovaries could prevent pregnancy, or cause my body to birth out a nearly microscopic baby, I panicked. I never realized how badly my disease could be affecting me longterm. 

The Decision.
The brain fog was brutal in the first few months of the new year. It was so common that I didn't even like leaving the house. I remember one time I was driving home and completely forgot where I was or how to get home. One morning, I got up and tried to talk to my Mom about something but stumbled over all of my words and couldn't remember what I was trying to say. Every healthy person has a "brain fart" or "senior moment," but that happened all day long, every single day. I remember talking to my Mom in that moment and breaking down into tears. "I can't take it anymore! I'm done! No more! I need treatment." 

I made an appointment with my endocrinologist. When he came into the exam room, guns were ablaze. He was already yelling at me before he sat down. I finally got a word in and was able to say, "I want treatment." His demeanor completely changed. The walls came down and he became my instant buddy. 

I am a voice teacher and a musician. Surgery was never an option in my mind, since the risk of vocal cord damage is possible. I did not want to take that chance. My doctor agreed to take surgery off the table for this reason. So, I decided to get radioactive iodine treatment. 

My doctor explained exactly what happens in this treatment...
The thyroid is the only part of the body that uses iodine. When the iodine is radioactive, the thyroid soaks up the iodine and the radioactivity damages the tissue. So the thyroid actually helps in destroying itself. The point is to kill off the thyroid gland and become hypothyroid, which is easier to treat  Once hypothyroid, the patient then takes synthetic thyroid hormones pills every day for life. It sounds easy enough, though the idea of taking daily pills made me uncomfortable. I knew I had to accept this for my future health. 

We set a date for treatment: Early May 2014.

Be blessed and be well,
J

The Butterfly in my Throat : Strength in Weakness

"I am glad to boast about my weaknesses, so that the power of Christ can work through me."  
2 Corinthians 12:9 

New Endocrinologist.

I was being treated by my primary care doctor for a short period of time. My monthly blood work results were getting a little better, but my symptoms kept coming and I wasn't feeling well. I was referred to a new endocrinologist. (Endo #4!) He practiced under the University of Connecticut. He had a world of knowledge, and was able to summon all kinds of thyroid research at the tip of a hat. After reading all of my records, he was not happy with my care and how I had refused treatment after all these years. We discussed all kinds of research and options. I was dosed up to the eyeballs on methimazole (50-60mgs daily), metoprolol (150mgs a day), and aspirin. 

Yoga and Strength.
I was seriously weak. I could not exercise or handle walking for long periods of time. I had a cane that I used occasionally.  As mentioned before, I had a problem lifting myself off chairs and walking up stairs. It took me 10 minutes to walk up a small flight of stairs and I was always so scared when I knelt on the ground and couldn't stand back up. 

In January of 2013, I found an AM/PM yoga DVD that my sister had purchased and I decided to give it a try, as a last resort. I started with the PM practice because it was gentle, and all on the floor. I remember the first time I finished the practice and I was resting in the final pose, tears streamed down my face. I did not even understand why I was crying. I was so intrigued by the practice, that I kept trying it, relying heavily on the PM practice. The AM practice was tougher for me and most of the postures were unattainable. It was an intense cardiovascular workout for me at the time, but I tried to do it every day. For every inhale that the instructor would take, I would take 5 inhales and exhales. Nevertheless, I did the practice nearly every day, feeling strength rise up inside my body. Every week, a new posture from the DVD became apart of my practice. After a month and a half, I felt I had nearly mastered the AM/PM practices and I was now bored with it. I was able to start moving better and walking upstairs became easier and easier. I started doing Pilates. I started doing low impact cardio workouts. I remember the day I was able to do a jumping jack; I ran into my parents' bedroom and showed them. 

I moved onto new yoga practices that I could find online, namely Yoga with Adriene. They challenged my body more and more, and I felt stronger than I had been in years. I stuck with the practice, constantly reading about postures and how they benefitted the body. I relied on my yoga practice to help relieve my pains, strengthen my body, help my flexibility, and ease my anxiety. I am so grateful for the practice.

Autumn Virus. 
The year was mostly uneventful. I was teaching voice lessons on and off all year as my only source of income, since I was still too weak and foggy for a legitimate job. I was very lethargic all summer, but pushed through it and still enjoyed it. I still practiced yoga, and occasionally worked out. I was able to walk normally again and walk up stairs again. I was able to pick myself up off the floor without pushing off or hanging onto anything. I still suffered with anxieties and symptoms, but it felt like my normal life. I was excited for my autumn. I craved all of the fall activities. I joined a choir, hoping to ease my way into more excitement and responsibility. I was able to attend a big faire in Massachusetts with my family, but a few days after the event, I came down with a little "cold." Soon, my throat started to hurt, the lymph nodes in my neck all swelled, and I was full blown 'sick as a dog.'

No treatment was making me feel better, no amount of stretching, no time in the sun, no tea... nothing. I finally went to an urgent care center where they discovered that I had mono, my white blood cells were low, and my liver and spleen were very enlarged. I was instructed to go to an emergency room. The doctors there were concerned that my anti-thyroid medications were the cause of my low white blood cells, so I was taken off of them, and needed a followup with my primary care doctor. After a week without my thyroid medicines, I woke up with heart palpitations and went back to the emergency room. My heart was jumping at a resting bpm of 125 and I was put back on the medications. 

Emergency Room - Oct 2013

I thought mono simply made a patient feel very tired. I was basically bed-ridden for two months. I had severe pains in my body, mostly in my legs, which was alleviated temporarily by compression socks. My throat, lips, and tongue swelled, my abdomen was always hurting from the enlarged spleen and liver. I lived on advil and tylenol to keep the fever and pains at bay. I lived on baby food. 

Breakdown.
I was so disappointed - I had to quit teaching lessons, and I quit the choir I had joined. I missed my entire autumn. I got sick when the leaves were green and started feeling better by the time everything was grey and snow was in the forecast. By early December, the virus was basically gone, but it had left me wretched. I was plagued with anxiety, 24 hours a day. I barely slept, I couldn't be left alone, I was afraid to drive anywhere, and I was physically exhausted and weak. 

I remember the night I was making Christmas postcards for my friends. I was up late, (since I was too afraid to sleep), sitting in the kitchen working. It was 3am. I began to feel the lethargy deep inside. I was so tired, so overwhelmed with anxiety and fear, and I began to cry. I felt hopeless. There was no light at the end of the tunnel in my mind. I broke down and prayed, "God, help me." Immediately, images of yoga, healthy food, sunlight, and other things appeared in my mind. I realized I had received an answer to prayer. Sure, my disease was going to do whatever it did best, but I had control over my food, my exercise, my sleep, my sunlight, etc...  I realized I had not laughed in a long time. That was going to change. 

Disease and sickness can and does make you wretched and strips you down completely. A person cannot rely on medication alone. Fight the good fight and resist the urge to slip into despair and darkness, where hope does not exist. 

This song became my prayer: 

"All my soul is troubled, All my will is worn,
Tired and discouraged, trampled on and torn,
Every breath a battle, Every step a war,
My heart, a broken vessel, 
This night an angry storm. 

When sadness crashes like an ocean,
when fear is deeper than the sea,
when I am swallowed by the darkness,
Will you come and anchor me?

I cannot see through this, 
Can you be my eyes?
I'm completely hopeless,
Can you shine a light?
I have no more strength left, 
Can you stand and fight?
I'm dying in this doubt,
Can you be my faith tonight?

Hold me still and hold me close,
Until it all passes away. 
I beg you not to let go,
All I really have to know
is that you are here and I am not alone." 
Lyrics © Warner/Chappell Music, Inc. 

Be blessed and be well,
J

The Butterfly in my Throat : The Search for a Natural Cure

Living on the edge.
I hated my options. I hated the idea that I had to get rid of my thyroid to be healthy. I didn't understand how destroying something in my body would make me feel healthier. I hated the idea of needing to be on replacement thyroid hormone pills for the rest of my life. Taking pills daily was already a chore that frustrated me greatly. It's nothing compared to the treatment of other diseases, but it drove me crazy. 

Every checkup with my doctor was met with scare tactics, that I now realize were all serious possibilities. My endocrinologist was concerned about atrial fibrillation and worried about thyroid storm. He mentioned that there was a small possibility that my thyroid could just burn out and stop producing so much hormone. I secretly hoped that this would happen, but it would take years, and now I know it would cause irreversible damage to my body. 

A New Specialist. 

My insurance changed and I switched endocrinologists again. This time, it was a scornful woman with a thick accent, who walked into my exam room for the first time and immediately started spouting off everything wrong with me. She started at the top of my head, pointing, "Your hair is thinning, you're missing 1/3 of your eyebrows, your skin is dry and broken out, your eyes are too bulgy, your lips are chapped, your neck is swollen, your heart is pounding, your blood pressure is high, you're not a healthy weight, your digestion probably is terrible right? Frequent bathroom trips I'm assuming? You're legs are red, and your ankles are really swollen."

She refused to prescribe medication, (not that I would take it anyway), and told me that I needed to choose between surgery or radioactive iodine. I ended the exam the same way I always did, "I'll think about it." I left the appointment and cried in the car the whole way home. I always cried after an appointment. I was always left with a sense of dread and failure. "I'm not getting better, and the future is bleak." 

These are the results from a blood test after that appointment:

Despite it all, I still fought to find my healthy body. A tiny bit of hope still lingered below the surface. 


The Search for a Natural Cure.
I had heard of other autoimmune diseases being cured naturally. Heck, I heard of cancer being healed naturally too. Why would a thyroid disease be beyond natural healing? I gathered so much information on autoimmunity, Graves’ Disease, and thyroid problems. I spent hours at my computer and in books trying to find the answer, praying always for a cure. 

With every story read about natural therapy healing a disease, my disdain for doctors grew. 'Money-hungry thieves,' I thought. I began to distrust them completely. I began to question the field of endocrinology completely: A patient with hyperthyroidism is treated by removing the thyroid or destroying the thyroid radioactively, leaving them to the mercy of synthetic thyroid pills for the rest of their life. A patient with hypothyroidism is treated with synthetic thyroid pills for the rest of their life. So to me, an endocrinologist was nothing more than a pill pusher. Each of my endocrinologists were unwilling to give me any other options or work with anything other than pills, looked down on me for even considering other options, and threatened to dismiss me from their care because of my views. 'This is my body,' I thought, 'and I'm not allowed to have any say in what happens to it.'

After I had found a decent amount of information, I sent it to my endocrinologist with a letter dismissing me from her care. She was infuriated by this, to say the least. I don't blame her. 

Becoming my own Doctor. 
I tried everything that I could think of and could afford. 

• I tried to avoid toxic chemicals, found in face washes and cleaners for example, choosing to make my own out of natural ingredients. 
• I sat outside in the direct morning sunlight for 15 minutes a day. 
• I tried to regulate my sleep cycle, but failed miserably. 
• I tried to take a vitamin B complex, but despite all of the different doses and brands, they all equally made me sick and lose my appetite. I instead opted for a whey protein that was loaded with vitamin B, but it was $65 for a small container. 
• I started exercising more frequently and got a gym membership. I kept my workouts very low-impact, walked on a treadmill, and did Pilates. I lost quite a bit of weight, but mostly from being in a hyperthyroid state. I remember checking my heart rate at the gym one day. An outrageous 200bpm. 
• I watched my diet, eating high in protein, researching paleolithic diets, avoiding caffeine, and making sure to eat many cruciferous vegetables (broccoli, cauliflower, brussels sprouts, collards, kale, cabbage) as I had read that they contained compound called 'isothiocyanates' which block an enzyme in the thyroid called 'TPO' (thyroid peroxidase). TPO attaches iodine to thyroid hormones to make them active. The thyroid is fueled by the iodine found in food. I started taking a cruciferous vegetable supplement as well, hoping it could potentially work as an antithyroid drug replacement. *NOTE: There has been no evidence to support that cruciferous vegetables decrease thyroid function.
• I had read of the benefits of iodine therapy, even for hyperthyroidism. After consulting with a naturopathic pharmacist, I started taking Prolamine Iodine. The first few times I took it, I felt temporarily drunk, but once I got used to it, I felt amazing. After a month however, I was feeling awful and almost toxic. The iodine was stimulating my thyroid so much, that it was probably producing more hormone than it was able to store.
• I took Thyrocsin, a complex that supports thyroid health. It contains ashwaganhda root, which I had read was beneficial to autoimmune disorders. Taking this supplement always made me feel faint and very foggy, however.
• I bought Vita-Fresh Life Greens, a green drink powder, which I tried so hard to drink but had to talk myself out of vomiting every time. It left me feeling very nauseous. 
• A friend bought me glyconutrient powder: a combination of fenugreek, turmeric, shiitake mushroom, kelp, whey protein, psyllium, lecithin, and bovine cartilage, said to help autoimmune disorders. It also made me sick to my stomach. 
• I took bovine colostrum supplements, a nutrient found in the first milking of cows that stimulate and support the immune system with disease fighting antibodies, proteins, carbs, fats, vitamins, and minerals. Colostrum was the only natural supplement that improved my blood work (specifically my ANA- antinuclear antibodies). *Read more about colostrum: The Colostrum Miracle: The Anti-Aging Super Food

*This post is not meant to discourage the use of any of these supplements. They are simply my experiences. 

Nothing was working.
My general practitioner was treating me, giving me options to try to beat the disease naturally: allowing me to try my supplements, recommending a vegetarian diet, and even acupuncture treatment (I did not try the latter for financial reasons). I was excited to be given options and to be listened to by a doctor. I'm grateful to her for this. Yes, I was happy, but my body felt so sensitive to every new supplement. Everything made me feel sick. My doctor was uncomfortable with my blood work which was still very abnormal. My heart rate was very high. I had an EKG again, and was put on aspirin to try and keep my heart safe. 

I was becoming very physically weak. Exercise was less and less of an option and I was prone to injuries more often. I developed hip problems and exacerbated a pre-existing knee problem. Walking up stairs became more and more difficult, to the point where I avoided going downstairs in my house. I could no longer push myself up off the floor, and I avoided sitting in some chairs for fear I wouldn't be able to get up. 

My stress level was uncontainable, which made coping all the worse. Between personal issues, my health, helping my best friend plan her wedding, having no money, and being unable to work, I was a ball of chaotic stress. I suffered with intense, powerful migraines and panic attacks. I was plagued with anxiety and depression. I remember the day my family sat me down and intervention-style asked me what was going on. I barely had any motivation to shower, I barely left my bedroom, I never made myself up, lived in my pjs most of the time, my bedroom was filthy and I stopped cleaning it. (Everyone who knows me knows well - Im a neat freak!) I stopped caring about everything. I also developed a stomach ulcer on top of everything else. 

I eventually made it back to the emergency room with an intense, terrifying migraine and panic attack. I was put on a beta-blocker (metoprolol) at the hospital and once I saw my doctor again, I was put back on methimazole and thankfully did not have the same reaction as I did last time (itchy all over). My doctor felt uncomfortable treating my disease and referred me to another endocrinologist.  

More than feeling old and exhausted, I felt like I failed. I was a girl in her mid-20s trapped in the body of an 80 year old woman. It was a miserable existence. I just wanted something good to happen. Something good to hang onto. I was always grasping at straws. I knew I needed medication and probably treatment, but I hoped for better things. I figured I'd make the best of it, and hope I would go back into remission, like it did before. I had a game plan. I could get back into remission and try to keep myself there naturally. Spoiler alert: it didn't work.

November 2012

Be blessed and be well,
J

The Butterfly in my Throat : Square One

Back to Square One. 

Back to the beginning. I enjoyed about a year of remission before feeling symptoms again. I went back to my endocrinologist. It was always the same exact exam. He checked my weight, blood pressure, temperature, asked if I had any heat/cold intolerance, made sure I wasn’t planning on getting pregnant, explained that the anti-thyroid medications can cause birth defects, he checked my heart, looked at my eyes and their movement, held out my hands to check my tremors and if I was anxiously nail biting, felt my skin to see if it had the velvety texture associated with Graves, and felt my throat. Sometimes he measured my goiter. 

He prescribed my medications again: the anti thyroid drug methimazole (or Tapazole), a beta blocker, and an aspirin. I stared at the pills and cried a little as I took them. I felt so defeated. It had been a year and a half since my last one. I forgot the chalky taste it left in my mouth. I had a reaction to methimazole this time though. I am unsure whether that was a stress reaction or just a side effect. Perhaps my body needed to get used to it again, but I felt incredibly itchy from head to toe, even on the inside. I was afraid that I had developed an allergy to it. I got nervous and refused to take it again. The only other option available was Propylthiouracil or "PTU." PTU came with a flyer of information about liver issues and other dangers. It was unnerving. I had to take PTU 3 times a day and was warned about forgetting doses, which I honestly did often. It had some strange side effects; the strangest being a horrible metal taste that lasted for 45 minutes after taking it. I had mints on me all the time but nothing could get rid of that taste. It made me so nauseous. I can remember it now, years later. 

I never went to the movement disorder specialist to whom my neurologist referred me. My tremors were all related to hyperthyroidism, so I didn’t bother. I didn’t bother going to the ophthalmologist either. I didn’t see the point if all of my issues were related to one problem. When my thyroid is functioning properly, I don’t shake and my eyes don’t bulge. 

I did go to the cardiologist a few times. I had multiple EKGs and an echocardiogram. I had tachycardia, bruit, and a heart murmur. Despite how fast it was beating, my cardiologist wasn’t concerned about the health of my heart, as long as I stayed on beta blockers and antithyroid meds. 

Job. 

I was feeling a bit better as the months passed. It wasn’t worlds different. I had less brain fog, less weakness. My thyroid didn’t respond as well to PTU as it had with methimazole, but it was enough that I felt I was able to pick up a part time job in summer 2011. It was nothing special. A cashier job. It started out well. I worked as hard as I could with a good attitude. Sometimes my PTU dose would fall into the middle of a shift, which was a bit embarrassing. I kept it in my pocket, and quickly took it when I thought nobody was looking. I felt okay, but I was always so hot and sweaty, nauseous and tired. 

It was all I could manage at the time. I took Wednesdays off so I could teach voice/music lessons from my home. It was a welcome break from the many customers and bright lights. I was safe at home doing what I loved, without worrying about getting sick. 

As the months progressed however, I was unable to get through my 8 hour shifts. I would feel faint, hot, fighting headaches, nausea, brainfog. It was just “not right.” Counting money was so exhausting to me. An incomprehensible puzzle. I didn’t realize how much being around people affected me. My bosses hated how obsessed I was with disinfecting my workspace. No amount of Purell could keep me from getting sick. I called out constantly. I left work early all the time. I had my shifts bumped down to 4 hours max. 

One day at work, an old classmate came to ring out his items. He was shocked to see me. “What are you doing here? You work... *pause*... here?” he asked cynically. I felt embarrassed and made up some excuse about another job and this was just extra pocket money. He said, “Well I work at a bank. I’m a manager there. Okay bye.” He rolled his eyes and walked away laughing. 

My old classmate, I wish I could be a stronger person and not let it bother me, but I feel like I am dying. My immune system is broken. I am really trying to be as normal as I can be. You aren’t strong enough to deal with what I deal with on a daily basis, but you succeeded in making me feel worthless. I hope it made you feel good about yourself.

Not surprisingly, I couldn’t hold down the job. With close to 20 work absences in 4 months and my deteriorating health, I had to leave. I did however continue teaching voice lessons once a week because it didn’t require too much energy.

Liver issues.

I was feeling sicker and sicker. I learned that my thyroid wasn’t responding to PTU anymore. Also, my liver enzymes were becoming dangerously elevated and my white blood count was too low. My doctor called me in a panic to tell me to stop taking PTU immediately, fearing liver failure. I had 2 giant bottles of PTU. They cost $200. I had to throw them out. 

Fearing that I was allergic to methimazole and obviously not able to take PTU, I was stuck. I had 2 options: a thyroidectomy (surgical removal of the thyroid) or radioactive iodine therapy. I did not like the risks involved in surgery and was terrified of having radioactive material in my body. I did not like the idea of requiring a replacement thyroid hormone pill to survive for the rest of my life. I wanted a different, better option. I was so angry at my disease because there were no options that I liked.

Thus began my, “I’m going to find a natural option to cure my disease” phase. 

Be blessed and be well, 

J

The Butterfly in my Throat : The Difference a Year Makes

My Happy Life. 
I spent the next few glorious months after my college graduation preparing for graduate school and I moved into my first REAL apartment with two of my friends in Quincy, Massachusetts. I worked 3 part time jobs and attended full time school in Cambridge, studying music. I commuted daily on the "T" through Boston, and despite being squished into the train, I was blessed to see the city every morning and night. In between classes, I walked to Harvard Square, bought a cup of tea, sat on the steps of Harvard's Memorial Church and did homework. Every day, I passed historical buildings, walking the same streets that America's founding fathers walked. Every day, the same man would heckle me for money, explaining in detail that he needed it to play poker with his friends at IHOP. 

It was one of the happiest times of my life. I was learning and experiencing so much. I rarely felt anxious. I was surrounded with things I loved. I was coming out of my shell. I never thought about my thyroid. I never thought about my disease. In my heart, I believed the worst of the disease was over and I never had to think about it again. 

How quickly things can change.
During my second semester, things drastically changed. I was starting to feel overwhelmed and an avalanche of stress quickly buried me to a degree that I didn't know was possible. I quit one of my jobs and gave up many responsibilities in another job. I was always exhausted, and slowly started to feel depressed and nervous. I easily snapped at my roommates and my friends.  

I was so desperate for a break, but no days off or any amount of holidays could refresh me. My favorite daydream was about being able to stop time just so I could rest for a few weeks. I was purposefully missing school and work. One morning, a representative from my school called and in a melodramatic movie-like moment, I crawled on the floor with a blanket over me, shaking, waiting for the phone to stop ringing. The representative called multiple times over the course of a few weeks. One day, I actually answered and she said, "Why are you avoiding me? What is wrong with you? Is something going on at home that you need to talk about?" 

"You have thyroid problem." 
One Sunday, I attended an Easter/Passover church event and a woman I never met sat across from me. She pointed to me, then pointed to her neck and in a heavy accent said, "You have thyroid problem." I defensively replied, "Not anymore. I did." "No," she said, "You HAVE thyroid problem." I uncomfortably shifted in my seat for the rest of the event. 

I was angry and frustrated that I still looked like I had a thyroid problem (as pictured below), but I absolutely refused to believe that the problem still existed.

April 2010

A few weeks before the semester came to an end, the thought of returning to school for even one more day made me feel physically sick. I made the decision to leave my grad school and move back home to Connecticut with my parents. I never felt so relieved by a decision in my life.

"...and the words start to sound weird?" 
That summer, I was so lethargic. I stopped getting my menstrual cycle. I developed tremors in my hands. My heart felt jumpy and fast. I started to have trouble remembering things. Common sense facts were lost to me. Conversations made me nervous and uncomfortable because I couldn't articulate well. Words sounded strange to me. 

"We're going to be just fine. You know how you say something over and over and the words start to sound weird? Going to be just fine, just fine, just fine..." - Holly, The Office: The Ultimatum, S7, Ep 13. 

I started to retreat. I stopped spending time with friends and people. I started to experience intense migraines and some of the worst panic attacks of my life. Moments where I was convinced I was dying.

That woman's heavy accent lingered in my mind, "You have a thyroid problem," but I didn't want to believe it. 

Bad news. 
I was in serious denial. 

After suffering through some intense migraines, I went to a neurologist. He sent me to get brain scans, a neck MRA, blood work, contacted my endocrinologist (against my wishes), made an appointment with a cardiologist, and made an appointment with a movement disorder specialist for my tremors. 

I remember sitting in a restaurant when I got a phone call from the doctor about the blood work results. I let it go to voicemail. I couldn't deny it anymore. I knew what the voicemail was going to say. I knew I wasn't in remission anymore, but I didn't want to believe it. I listened to the voicemail at home. My thyroid hormones were severely elevated and I needed immediate treatment. 

Besides my parents and sister, I didn't tell anyone about my returned hyperthyroidism for months and was infuriated when anyone would find out, via family members. It was obvious it had returned. You just needed to take one look at my swollen neck, large eyes, and watch how terribly I fidgeted. I really couldn't come to terms with it. I was so distraught and heartbroken. 

The difference a year makes. 
In the fall of 2009, everything felt so perfect. I was independent, excited, and dreamed big. My life was full of music, learning, friends, exploring. I was so happy.

In the fall of 2010, I felt like my life was ripped away from me. I was sick, anxious, depressed, and could not support myself, needing to live with the help of my family. I was so filled with regret. My life was full of sleep and doctors' appointments. 

Bitterness started to eat at me. "Why me?" "Why me?" "Why me?" "Why was I dealt this hand?" "What did I do to deserve this?" 

I have no answers. 

Be blessed and be well, 
J

The Butterfly in my Throat : Fear & Hope

Learning New Things.

That summer, I decided to live on campus after the school year ended, yet again. I was working, taking music lessons, and still lived alone in my small dorm apartment. The disease was ever on my mind. I was reminded of it multiple times a day. Symptoms here, anxiety there. The drive to feel normal kept me going. I was still learning new things about my disease and how it affected other parts of my body. I remember a pretty severe dizzy spell that lasted for a few weeks that summer. It was simply seasonal allergies, but it was a first for me. My body responded differently to things. 

I was well enough to take a vacation in the summer before school. I flew to Michigan to visit a friend. One day, we traveled to Chicago and planned to stay the entire day. By 2pm, I started feeling strange, weak, faint, and despite all the fluids I took in, I felt overwhelmingly dehydrated. We left early and I learned later that I felt sick because I was in the sun for too long. Somehow my medications reacted strangely when I had been exposed to too much sunlight. 

I still did not understand that I was suffering with an autoimmune disease. I still did not understand what was physiologically happening in my body. I did not understand the correlation between the physical aspects of Graves' disease and mental health. I never knew what to expect. I did not know what was a symptom of the disease or a side effect of medication. I felt I couldn't trust my doctor because she was fiercely negative, difficult, and argumentative. That summer, I switched endocrinologists.

The Visual Symptoms. 

Before school started up again, my hematologist (a blood specialist) released me, saying I was, “too healthy to continue in his care.” It was a magical moment. I walked out of that office so full of joy that my skin tingled. No matter how healthy or unhealthy, when you struggle with disease and a doctor says, “You’re too healthy,” you've basically won the lottery. The crushing weight of fear on my chest became a bit lighter. 

His office was located inside a large cancer center and his practice was shared with an oncologist. Despite all the frustrations and personal issues I dealt with, I was always humbled by walking into that building. Every person in that building, including staff, was visibly sick. 

Graves’ is a disease that bubbles below the surface. It can affect nearly every system in the body in some way and make you feel ceaselessly sick, but it is not noticeable. One will either lose or gain weight, the throat will look swollen (goiter), the eyes bulge out (Graves’ ophthalmopathy), one will appear tired and will fidget often, and sometimes one can develop a rash. These are not striking visual symptoms. Walking into a cancer center with a full head of hair, a swollen neck, acne, and slightly larger eyes made me feel like I was bragging. 

(Google image "Graves' Disease" and I promise you'll either laugh or have nightmares for days) O_O

Control.

In my senior year of school, I lived with two of my friends in a dorm apartment. Living with others certainly helped distract me from my fears and gave me some peace of mind. 

Sometimes, I tried to be apathetic and not allow the disease to bother me. “I have no feeling in my fingers or my lips today. It’s just part of the disease. Let it go.” Many times, I was overwhelmed and afraid. “I have been seeing spots all day. Am I in danger?” I always felt unsafe because there were so many unknowns. Familiar symptoms appeared randomly. New symptoms manifested themselves. I had a new specialist but still never felt any doctor was thorough enough with me. Experiencing these new things and not understanding symptoms or side effects made me feel very out of control. More than anything, I just wanted to feel normal. At the very least, I wanted to be accustomed to what I was feeling and know what to expect. 

Whenever I caught a virus, I felt so relieved. Normal, healthy-minded people would be discouraged, but I felt a sense of freedom. I could EXPECT all of my symptoms. I thought, “Thank goodness this is not some weird unknown part of the disease." Once I recovered from a virus, a small part of me started to feel nervous again. Back to the unknowns. 

A psychologist told me years later, "You are afraid to be healthy because you expect to be sick. You learned to be comfortable in feeling sick, because you expect what you are going to feel." Expectations were in my control. 

Fear.

My hypochondria convinced me that if someone had a disease, I was weak enough to also contract that disease. If someone fainted, I assumed I would faint. If someone had a heart attack, I assumed I would also have one. My mind was a constant whirlwind of fearful torture. I was busy constantly, but it kept me from collapsing under the weight of my fears. 

My prayers were not acclamations of love and praise, but the cries of a beggar. A person pleading with their attacker, “God, please don't kill me. Please don’t kill me. Please keep me safe. Please don’t let anything happen to me. Please, please, please.” 

I remember the morning God spoke to me through a Psalm... 

Psalm 91

Safety of Abiding in the Presence of God

1

“He who dwells in the secret place of the Most High

Shall abide under the shadow of the Almighty.

2 

I will say of the Lord, “He is my refuge and my fortress;

My God, in Him I will trust.”

3 

Surely He shall deliver you from the snare of the fowler,

And from the perilous pestilence.

4 

He shall cover you with His feathers,

And under His wings you shall take refuge;

His truth shall be your shield and buckler.

5 

You shall not be afraid of the terror by night,

Nor of the arrow that flies by day,

6 

Nor of the pestilence that walks in darkness,

Nor of the destruction that lays waste at noonday.

7 

A thousand may fall at your side,

And ten thousand at your right hand;

But it shall not come near you.

8 

Only with your eyes shall you look,

And see the reward of the wicked.

9 

Because you have made the Lord, who is my refuge,

Even the Most High, your dwelling place,

10 

No evil shall befall you,

Nor shall any plague come near your dwelling;

11 

For He shall give His angels charge over you,

To keep you in all your ways.

12 

In their hands they shall bear you up,

Lest you dash your foot against a stone.

13 

You shall tread upon the lion and the cobra,

The young lion and the serpent you shall trample underfoot.

14 

“Because he has set his love upon Me, therefore I will deliver him;

I will set him on high, because he has known My name.

15 

He shall call upon Me, and I will answer him;

I will be with him in trouble;

I will deliver him and honor him.

16 

With long life I will satisfy him,

And show him My salvation.”

I had spent the previous night like most nights: worrying, fearing, doubting, but this Psalm crushed my fear. From the moment I read it, I knew this disease would not kill me and I was not in danger of dying. The words were life to my body, my mind, and my soul. These words are my treasure. I prayed these words. I read them constantly. I kept them so close to my heart. They give me hope, strength, courage, and peace. 

In my senior year of college, I wrote a three movement string orchestra piece based on verse 7 of this psalm, called “In the Shadow of the Almighty.” The live performance is here, if you're interested: 

"Under the Shadow of the Almighty"

(My apologies! The recording got wonky and stopped for a few seconds at 12:47). 

Hope.
Sometime in the spring, I was taken off my medications. I don't remember exactly why; whether it was a trial and error thing to see what would happen, or whether my endocrinologist thought I didn't need them anymore. Either way, it felt amazing and liberating to be off medications.

I graduated in May 2009. I remember the morning of my graduation, my parents gave me a necklace that said, “Hope." It was so special to me. It reminded me that with hope, I could overcome anything. With hope, there's a vision, there's purpose, and there's a future. 

I went home that summer to prepare for graduate school in the fall. Despite everything my doctors said and all the fear that had convinced me otherwise, I went into remission.

May 2009

Be blessed and be well,

J

The Butterfly in my Throat : It Sinks In

Hypothyroidism.

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,
J