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 : Radioactive Iodine Treatment

Photo from late March 2014

April. 

April (2014) was a nightmare. I was so busy. I had appointments with doctors 3 times a week (some appointments were unrelated to Graves and just happened to fall in the same month). I was so overwhelmed that month. I was so exhausted.

Committing to anything was challenging. My favorite yoga teacher (Yoga with Adriene mentioned in earlier blogposts) announced that she was coming to New York City in April. She set up a class and a meet and greet. I did not want to miss it, but the nagging discomfort of my symptoms and disease gnawed at me. I was on and off my medications the entire month, and I was so afraid of getting sick in the middle of New York City. With encouragement from Adriene's community of yogis on Facebook, I got the courage to go. It was my first public yoga class ever. I laid out my yoga mat in the back of the studio and in the first posture, we were instructed to lie flat on our backs. My entire body went completely numb because I was so full of anxiety. Once the class started, I was able to find ease and comfort. I enjoyed my time so much! I met with Adriene and some fellow yogis. Of course, once I returned to the car, I got a terrible headache and felt sick. Nevertheless, this event was a remarkable beginning to building my confidence and fighting through the symptoms of my disease. 

April 13, 2014. Yoga with Adriene meetup in NYC

"The breeze of grace is always blowing - catch that breeze J!"

Earlier in the year, I was feeling motivated and in an effort to get the ball rolling in my life, I joined a local choir, despite feeling sick. Our big performance was at the end of April. Rehearsals were a few times a week and on weekends. I remember feeling slightly uncomfortable and full of anxiety every week, but I stuck with it hoping that it would help prepare me for a real life and real responsibilities. On the day of the concert, I was feeling perfectly content until I stood on stage and the first few measures of the music started. Immediate panic rose up in me from nowhere, it seemed. Instead of reveling in all the months of hard work for this final, beautiful performance, I shifted uncomfortably in the risers talking myself out of jumping off the stage and running to my car. Through prayer and lots of deep breathing, I managed to make it though the performance. I left in such a hurry and was so relieved to make it home. It felt like such a waste. I didn't even enjoy it. This was my life. I never enjoyed anything.

Photo of goiter from April

Graves' Disease eyes from April

Tests and Scans. 

I needed a thyroid ultrasound, a thyroid uptake and a scan. To get an accurate result, I was taken off of my medications for at least a week. I remembered how sick I was in the fall after being off my medications for a week. My heart was jumping and racing. I was not looking forward to this. 

From 50mgs of Methimazole a day to nothing: I was feeling it. I couldn't think straight or focus well. I was quite despondent, nervous, easily startled, and full of anxiety. I always felt under the weather and achy. I was getting intense mood swings. I would be perfectly content and within seconds, be full of screaming tears and self destruction. One night, I was reading and noticed that I was struggling to see straight. I read and reread the same paragraph 10 times. Then, I started feeling that something was not "right." Within 20 minutes, I had a full blown migraine complete with vision loss, confusion, slurred speech, tremors, anxiety, loss of feeling all over my face and arms, and of course, the worst pain radiating through my head. Like a small child, I slept in bed with my parents that night. I was scared.

Last Methimazole pills before treatment

My best friend came with me to the hospital for my tests. I did my ultrasound. It showed a very large thyroid with good blood circulation. I also did my thyroid uptake and scan. I took a small dose of radioactive iodine and the next day, the amount of radiation in the gland was measured. If the gland soaked up a large amount of radioactive iodine, then it was severely hyperthyroid and only a small dose of radioactive iodine treatment was needed. The logic is that the thyroid works with the treatment. The faster it metabolizes the iodine, the better the radiation will be soaked up, destroying thyroid cells. My thyroid had soaked up a lot of the radioactive iodine according to the nuclear medicine doctors, so I wasn’t required to take a large dose for therapy; only 11 millicuries. (For reference, thyroid cancer patients are often given around 150 mCi). I was given a radioactive tracer shot, with some terrifyingly orange liquid inside and was scanned. The scans showed an abnormally large gland. I was scheduled for radioactive iodine treatment a few days later.

Thyroid uptake: 83% and scans from April 2014

Here is a photo for comparisons: 

Source: http://fitsweb.uchc.edu/student/selectives/Luzietti/Thyroid_diagnostics.htm

Treatment day.

May 9, 2014. I woke up feeling a lightness about my decision. I was somewhat nervous, but felt like I had made the right decision. I dragged my entire family to the hospital with me for support. The pill was waiting for me in a little cup. I took a little photo of it. In my spirit, I said the fastest prayer of my life and took the pill. No going back.

My Radioactive Iodine Treatment Pill 

After the very short hospital trip, I asked my family if we could go out to eat. It was a very welcome calorie packed, greasy cheeseburger mess that I enjoyed immensely. It was followed with ice cream. In my heart, it was a celebration. I felt that I finally had a future. I finally felt that I had made the appropriate decision for my health. 

The few days after... 

I was told to drink a lot of liquids, suck on a lot of popsicles, and eat sour candy to stimulate saliva production for the next few days. This was to prevent any damage to the salivary glands from the radiation. I had to stay over an arm’s length away from everyone for 3-4 days, flush the toilet twice, spit as close to the drain as possible after brushing teeth, keep my toothbrush in my bedroom, only use disposable cups, plates, and utensils, and do my laundry separate from the rest of the family. 

My family surprised me with this little sign on my bedroom door

A day after treatment, I began to feel pains in my neck. They were both dull and shooting pains, but not enough to warrant any OTC painkillers. I had only one passing moment of regret: I had done something that I could not reverse. The moment was fleeting and I got over it quickly. My decision was true and healthy. 

After 2 days, I was starting to feel very strange. I could not think straight and I could barely leave my bed. I’ve never felt so internally exhausted in my life. I remember going with my family to the local greenhouse to buy flowers for Mother’s Day simply because I was too afraid to be left alone at home. I felt like I was walking around that greenhouse like a zombie. I slowly pressed forward with no motivation, spacing out, eyes glazed over, feeling like I just finished a marathon. There was not a single thought in my mind that would complete itself, except for, “I think I’m going to pass out.” That was lowest point of the post-treatment process. 

In the days following, I had moments of darkness and discomfort, but I knew it was part of the process. I had hope that healing was coming soon. I wrote this in one of those moments: 

“When you feel sick and miserable, it’s hard to see the light at the end of the tunnel. It’s hard to feel like this is the homestretch. It’s almost over... just a little more time. After 7 years, you’d think a couple more months wouldn’t feel like a difficult, seemingly impossible task. Right now, I feel very in the present moment - something for which people strive. I’m just too tired to think beyond the headache, the fogginess, the general malaise, the weakness, the lethargy, the neck pain.” 

Following up with my doctor 5 days after treatment. He said that progress was starting to show already.

A week later... 

I had planned on having a tag sale to sell some old, unnecessary things the week after treatment. For a couple of days, I went through every closet, the attic, and the garage. I thought I was being foolish, but I had just enough energy to gather all the appropriate items. On tag sale day, I was outside from early morning to late afternoon, and had no trouble with fatigue. I got so sunburnt for the first time in years that day. Sunburns and tans were something I rarely experienced while on antithyroid medications. I was tomato red, but I actually welcomed it! It was part of the evidence I needed to see that my body was working properly. 

A month later... 

I was starting to gain some more energy. I was starting to exercise more, I was eating clean, and I was enjoying my newly discovered health. I was losing a healthy amount of weight for the first time in years. I got a phone call one day in June that my T3 and T4 hormones were in the normal range. TSH (thyroid stimulating hormone) was still suppressed, but it was expected since it takes many months for TSH levels to change. (Here is some more information to learn how the thyroid hormones work: http://www.endocrineweb.com/conditions/thyroid/how-your-thyroid-works) It was a wonderful phone call  with happy news. I danced around my room that afternoon and posted this collage photo to social media: 

Celebrating my blood work results!

Two months later... 

My neck was slightly smaller, my trachea was visible for the first time in 7 years, and my eyes did not bulge as much as they did months before. It was not as dramatic of a change as I had hoped for, but change was still evident and I did not complain. I was happy. I was not on any medications. I felt amazing and strong. I was exercising often, I was doing intermediate power yoga practices daily, I was eating so healthy, and even was talking with a life coach weekly about how to honor my needs and how to start my life again. 

July 2014. Worlds different from the late March photo above!

On July 14, I had an appointment with my specialist. He walked into my exam room, stared at me with a look of pride for a moment and said, “So I bet you feel good, huh? You listened to this old man! I TOLD you the treatment would work! Soooooo... how’s life?” In his examination, he said, “You are one healthy girl.” He listened to my heart and said, “Now, that is music. It’s music.” It was the happiest doctor's appointment of my life. I was so blessed and so full of hope. I felt my life was finally beginning. 

Summer yoga practice - getting stronger every day!

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

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