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 : 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