The Butterfly in my Throat : Good things come to an end

A day at the beach. Summer 2014

The Greatest Summer. 
It was the happiest summer of my adult life up until that point. I was enjoying the company of friends, meeting people, making new friends, going out a few times a week, spending every day outside, getting stronger, and living a healthy life. I felt that I had a sense of adventure. I was doing things that I had never done before, simply because I stepped out. I was experiencing new, amazing things. 

Horseback riding. Summer 2014.

I was also job hunting and preparing for the coming autumn months, hoping that I'd be working by then. I even started to dream again. I envisioned myself in a cute apartment with a decent job, writing music in my free time, finishing my masters degree and becoming a yoga teacher. I felt I was on the brink of independence and freedom. 

I remember having a long chat with a friend of mine on the phone. He said, "Maybe you feel better and you're happier, but you actually are responding to me faster and better. It is like your brain is working to full capacity now!" I laughed and teared up. It was a wonderful thing to hear. Full body health!

Yoga practice. Summer 2014.

Once mid August rolled around, life got a little complicated. My Grandfather was getting very sick and was deteriorating quickly, my cat got injured and almost died, two infant kittens that my family rescued died, and I was struggling with the seemingly nonexistent future of my romantic relationship of nearly 3 years. Stress definitely gnawed at my family and I, but we managed. I had some wonderful support from dear friends and family. God was faithful. 

All good things must come to an end, I guess? 
With thyroid treatment, the goal is to destroy the gland enough where it cannot function on its own anymore. Daily synthetic thyroid hormone would be needed in that case. I expected this result from day one. I hoped that the doctors would hit the jackpot and my thyroid would be balanced; just enough where I wouldn't need medication every day for the rest of my life. Of course, that is a super rare situation. 

Destroying a hyperactive thyroid and treating it as a hypoactive thyroid is safer and apparently easier. There is less risk. (With hyperthyroidism, long term problems are always an issue. Heart problems, osteoporosis, issues with pregnancy, and long term antithyroid drugs cause a slew of other issues as well. There are no long term side effects of synthetic thyroid hormones). I was told that it could take a long time for my thyroid to finally become hypothyroid. It was 4 months and I did not have any symptoms of hypothyroidism yet. 

Early September rolled around. I felt good, but I thought that allergies were really plaguing me. I felt pretty tired, hazy, and a bit foggy. I also thought that my thyroid hormones were possibly dipping too low. The time for blood work testing came and a follow-up appointment with my endocrinologist. My heart rate was resting at 120bpm when they took my vitals at the appointment. My blood work results were reviewed. "You're hyperthyroid again."  What I wouldn't give for it to just have been allergies!

The treatment was not enough. The nuclear medicine doctors had not taken into account the size of my thyroid. It had metabolized the radioactive iodine much too quickly for it to have worked sufficiently. "You have to go back on an antithyroid medication and make a decision about whether to do radioactive iodine treatment again or have surgery to remove the gland." I remember my doctor said, "Smile! You look so upset. You're going to be okay. I'm sorry."

On the drive home, I didn't think about anything. I didn't feel sorry for myself. I didn't feel empowered. I felt nothing. I think I may have cried a little when I got home. I felt so defeated when I stopped at the local pharmacy to pick up my antithyroid medication again. I was on methimazole and a beta blocker again. Same pills from 5 months earlier. 

I thought that by 2015, I'd have a life. A job, an apartment, dreams fulfilled. All of it was on hold again.

Biking with my cousin (right)

Despite the news, I still had just enough energy to enjoy myself. I went to faires, spent time with friends, and still felt a sense of adventure. Anxiety tried to creep in, but everything I felt, I had felt before. I knew all of my symptoms well. I knew that I wasn't in danger. I tried my best to ignore them. I tried my best to enjoy myself. Treatment, although insufficient, was enough to make my life more comfortable. It had helped.

Me (right) sliding with my Mom (left) at a faire

Me (right) and a friend (second from right) at a Renaissance faire

Me (top left) with friends and family at an Apple Harvest Festival

Life Changing October.
All of my symptoms returned, but not to the same severity. My goiter returned, albeit not as large as before. My eyes bugged out, though they were not as prominent.  

Within a couple of weeks, my life changed entirely. I was having nightmares constantly and feeling deep panic and stress. One night, I woke after a nightmare with an intense feeling that I needed to ask God's forgiveness. In my frustration during all the years of disease, I had blamed Him many times. I said many things to Him out of anger. I felt a desire to be closer to Him. It was a very healing moment for me. 

After months of debating and feeling a divine push, I decided to end my romantic relationship of 3 years. A couple of days after, my Grandfather was put in hospice care. A week later, he passed away.

My Grandfather and me

I spent most of my autumn with my Grandmother, my family, and my best friend. I went on a few dates here and there, met a couple of new people, and spent more time out of the house. I decided to do another radioactive iodine treatment. 

I began to prepare myself. I started an ashtanga yoga practice (6 days a week) to challenge my body in new ways and build strength before my treatment inevitably wore me out. I was the strongest and most physically fit I had ever been up until that point. 

Preparations.
The treatment was to be done at a university hospital. (The last treatment was done at a local hospital). I needed to be on a low-iodine diet for 2 weeks and off my antithyroid medications for at least a week. I was scheduled for tests and scans. The treatment was scheduled for January 9. All of the preparations needed to happen during the week of Christmas and New Year's Eve. 

There are few things more frustrating than going on a low-iodine diet during the Christmas season. (Low-Iodine Diet) No egg yolks, no dairy, no salt, no seafood, no soy, no chocolate, etc... THERE IS SOY AND SALT IN LITERALLY EVERYTHING. My family prides themselves on making amazing European foods and desserts. Needless to say, I was miserable. However, I took the diet extremely seriously. I wanted this treatment to work. I bought only organic food and refused to eat anything that I did not cook myself. I remember spending the afternoon with my Grandmother one day. She tried to make me lunch and I kept refusing. She ended up making a salad but was mortified when she couldn't season it with salt. She even froze her homemade Christmas desserts for me to have when my diet was over. 

I made quick oats every morning for breakfast with banana, raw nuts, raisins, and honey. I ate a salad with poached egg whites for lunch, and quinoa or basmati rice, steamed vegetables, and sometimes I added a very small amount of organic chicken for dinner. I cooked a lot of food in vinegar to imitate saltiness. Consequently, the diet made me feel so good, but the level of deprivation was beyond irritating. Everyone around me was eating pastries, baklava, rice pudding, and cookies. I was mostly annoyed that I couldn't eat cheese, which is my guilty pleasure! 

I left this note on the fridge to remind me: 

My cousins and I took a spontaneous trip up to Boston a few days after Christmas, where we met up with some friends. I had to pack a backpack with a day's worth of food in it because I could not trust eating at restaurants. It is not recommended that one eats out on a low-iodine diet. I had a lovely time, but on the way home, I was so hungry that I HAD to stop at a gas station for something to eat. Thankfully, they had coconut chips with no salt! 

Me (bottom left), cousins, and friends in Boston

New Year's Eve. 
I was planning on taking a solo trip back up to Boston to celebrate New Year's Eve, but I was off my medications, and traveling made me really anxious. Although I was not feeling as uncomfortable and sick as I expected, I still felt so tired, worn out, and foggy. I felt too sick to drive long distances. I hoped to enjoy my New Year's Eve. The last one was spent sick in my pjs, crying, and writing goal lists. I needed something more. I needed a celebration to remind me that my life was going in a better direction. 

Two friends from Boston surprised me for New Years and came down to my neck of the woods, got a hotel, and we had a little personal party. We watched a funny movie, played a game, ate snacks (I had to bring myself raisins, unsalted nuts, and raw vegetables) and we watched the Times Square ball drop. I finally had a celebration! I was so amped up for 2015. 

Treatment.
My radioactive iodine treatment was quickly approaching. Before my first treatment, I had hoped that the doctors would find that super rare, sweet spot where I wouldn't need synthetic pills for the rest of my life. Come second treatment time, I wanted the doctors to nuke my thyroid so much that no piece of it existed. I really didn't want to do this again in the future and a single pill a day was fine with me. With hyperthyroidism, I took many supplements on top of my 5-6 prescribed pills a day just to manage symptoms. Melatonin to help me sleep, colostrum to help my immune system and joints, glucosamine chondroitin for joint pain, Zylet for dry, inflamed eyes, natural supplements for thyroid function... From all of that to one pill a day is a miracle. 

My pills & supplements. Photo from January 2015

The week of treatment, I headed up to the university hospital to take a small dose of radioactive iodine for tests. 4 hours later, I returned to the hospital to have a thyroid uptake done. (A thyroid uptake measures thyroid function). The next day, I returned to have a 24 hour thyroid uptake and to be scanned. The rules and procedures were followed very strictly at this hospital. I couldn't have any liquids brought into the exam rooms with me. I was asked to urinate before being seen by the doctors to eliminate any radioactivity in my bladder from showing up in the scans of my neck. Everything was so spelled out. I deeply appreciated all of this. I felt like I was in better hands.

January's uptake results showed a very hyperactive thyroid

Thyroid scans: Jan 2015

2 days after my scans, I was on my way to get my actual treatment dose. I went alone this time. Worlds were different from treatment day May 9, 2014 and treatment day January 9, 2015. I had less fear, less anxiety, a lot of support, so much peace, and I felt God's divine presence near me the entire time. I always held onto the reins so much with my disease. With treatments like this, where the outcome is not always known and the timing is always random, you have to live presently and let things happen. Let go of the control, let God do what He will, and just be. 

This time, the dose was bumped up to 15 millicuries (11 last time). I wasn't nervous, but once I was led into the nuclear medicine department's room next to the lab, I got a little jumpy. The technician gave me a brief lesson on radioactivity, and even used a Geiger counter to explain how far away I will have to stand from everyone around me for the few days following. Doctors and technicians filtered into this tiny room, shaking my hand, giving me the rundown of the days after treatment. Same as before: Suck on sour candy, drink a lot of fluids, stay an arm's length away from others, flush the toilet twice, do laundry separately, keep my toothbrush in my room, spit close to the drain, use disposable plates, utensils, and cups, keep on the low-iodine diet for 2-3 days longer. 

I was given gloves to wear and a bottle of water. The pill was brought out in a little tube. I remember shaking a little bit as all the doctors and technicians watched. I stared at the pill for a few seconds and then a technician said, "You need to take that now because you're exposing us all to radiation." I said another super fast prayer to myself and took it. I got a ton of good lucks after that and was sent home. 

I felt relieved. I was happy. I was ready for the next few days and prepared for the next month. 

Post treatment.
From the hospital, I drove to the store to pick up lemons and sour candy. That evening, I started to feel neck pains and I loved them: a sign that treatment was ALREADY working. I was perfectly pleased. 

Sucking on a lemon to stimulate saliva production

After a couple of days, the worst side effect I was feeling was exhaustion. I allowed myself to rest as much as possible. I did not feel the same level of discomfort that I had during the first post-treatment process, so I was happy. I was also able to get off of my deprivation diet. I remember eating a tortilla chip and being so disgusted by its saltiness. Everything was too salty for about 2 weeks. 

3 days after treatment, I took these photos for reference. My neck was so much smaller. My trachea could actually be seen for the first time, and in a side shot, one could barely see a goiter. 

Throughout January, I felt very tired, but had just enough energy for my home yoga practice 4-6 days a week. I went out with friends occasionally, but mostly, I just rested. By late January, I posted this photo to social media with this caption: 

"Suck it Graves Disease, I have a human sized neck."

In early February, I noticed that my neck moved when I swallowed liquid. It was the first time in 7 years. I actually took video because I was so excited!

Be blessed and be well,
J

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