There’s a butterfly that lives in my throat.
Its quite a mean little thing.
It flaps its wings and makes my heart race
And causes my ears to ring.
It chews on my teeth and swells up my eyes
And wakes me at night for a midnight surprise.
It pushes the hair right out of my head
It splinters my nails and fills me with dread.
I’m happy, I’m sad, I’m angry then nice.
I’m burnt up half the time, then cold as ice.
Its that insect in my neck you see
It does not want me to be me.
It stiffens my joints, it makes me fatigued.
It chokes off my air, it’ Simon LeGree.
It’s a mean little cuss, it swells up with pride
And laughs when my neck has lumps on its side.
When it gets frisky and flutters about
I shake like a leaf both inside and out.
I’ve called the doctor, I’ve taken the pills.
It calms the beast down, but he’s in there still.
It’s not always the same, every day’s something new.
Sometimes I wonder just what should I do.
But I hang on and press on, and I hope and I pray
That its wings will fall off or it’ll just go away.
That butterfly stinks but I do what I can
Perhaps I should call the pest control man.
~Unknown Author
This poem describes Grave’s Disease so well. Personally, I have not experienced all the symptoms above, but its been a journey I wouldn’t wish on anyone.
As 2021 came to an end, I reflected on all that happened this past year. It is a strange year, because while I have experienced some of my worst moments, I also have experienced the happiest moments in my life.
In February, to my surprise, I met my now wonderful amazing, God fearing fiancé. I really had not planned for this, but God likes surprises. It sounds so cliché, but His ways are so much higher than our ways.
March – April, my symptoms got really bad. I remember the week before Easter; I got tested for COVID before I could get other tests done. I was experiencing so much dizziness and I was so weak. I no longer had the strength to go on my daily walks with the girl I was babysitting. My attention span, thought process and memory were out the window. The uncertainty that I experienced was scary. I was convinced I was having an anxiety attack.
Finally, in May I was diagnosed with Grave’s Disease. It’ll take me a long time for me to forget May 18th. It felt like the trajectory of my life changed in the period of an hour. I was put on immediate medical leave that lasted 1 – 2 months. These months were excruciating. I was exhausted, weak, lightheaded, taking daily naps, unable to sleep due to a racing heart, and experiencing a rollercoaster of emotions. I remember one morning, I dropped and broke a glass container and I cried. My emotions were so raw, and I felt like a toddler, unable to control them.
In August, my health was slowly getting better. I had a little bit more energy and I returned to work part time.
But yet, excluding my health challenges, it was a wonderful summer, filled with many memories that David and I made. I am sure you have seen our pictures! 🙂 From the time we met, my dear David has been so patient, caring and understanding. These characteristics shown during my sickness, was a huge confirmation that I wanted to spend the rest of my life with this man. I remember a conversation we had early on. I asked him, why he continued our relationship even when I was sick. This was an affirming moment for me. He explained how the sickness I am experiencing is only temporary and that we aren’t promised an easy life, so we need to be there for each other through the good and bad times. God knew I wanted a man that was mature, a man that would ask and answer the hard questions, a man that made me laugh and I got all these and more!
September I started school and I was blessed with a Christian professor. It was a surreal experience to talk on the phone about spiritual matters; she even prayed for me. The first course of my Masters went well. It was in Sept., that I began losing handfuls of hair, another dreadful symptom of Graves. I began dreading washing my hair and I started having some bald spots. This hair loss lasted 4 months, thank God it just stopped recently.
The hair on the left was only a section of how much I lost per wash. On the right, is all the pills(including supplements) I take in the morning.
In October, I took a leap of faith and started playing soccer again. I had really missed it and I wasn’t sure if I was physically ready, knowing that I needed it for my mental health. It felt incredible to be back on the field. The first week, my body started complaining half way through the game, but with some stretching, things went uphill from there! I thank God for the outlet of soccer.
End of October, was a really high moment. Some of my thyroid levels were in range for the first time since I had been diagnosed and I was feeling amazing. I no longer was taking naps, which was a big deal. I was on the lowest dosage of medication I had ever been on. I finally felt that my health investments were beginning to pay off.
November came with my policy class and it was rough. The professor was hard on us and her style of teaching was stressful. She would start out classes with us discussing the news, which seriously began affecting my mental health. The policy world is a negative field, in general, because it mostly points out the flaws of the provincial and national policies and doesn’t mention the positive things that have been done. The assignments were out of my comfort zone, typically I don’t find writing a chore, but writing a policy brief did me in.
In the midst of the policies course came the excitement of getting engaged! I knew it was coming and I was expecting it at every turn, but David surprised me with the small and large details. It was an amazing moment!! I thank God for this man, he’s a precious gem!
The policy course ended and the following week was really rough. After the stressful course, I now rested and came to grips with the cancelation of my trip. I crashed. My Grave’s disease symptoms came back and I felt the same symptoms I had in April. My bloodwork results showed I had relapsed. I was heartbroken. It is interesting how just like the day I received the news I had Grave’s disease, David was presently with me again the day I was told I had relapsed.
I was so discouraged. The news made me feel like the work from the last 6 months, had all gone to waste. I was so excited to no longer take naps and I was hopeful to a new year of health and rebuilding my strength. But the news hit me, making me readjust some plans and ultimately rest. The night I got the news, David and I were at the theater, watching a Marvel movie. There was a statement in the movie, about trying too hard, and slowing down. David looked at me with these gentle eyes, and no words needed to be said. God has really been speaking to me about giving myself grace.
The gentleman that he is, he let me grieve and sob, and then he prayed for me. Sometimes I allow myself to imagine where I would be if I hadn’t had David on this journey. I would be in a very dark place and I definitely wouldn’t be doing well in school while simultaneously coping with Graves. God sent me a physical angel and I thank God for him!
Let’s be real, life is hard, but if this year has taught me something. It’s to be thankful for the people around me. David has been a Godsend, encouraging me and praying for me. My mom and Carl have seen a different Charmaine at times, but yet we are there for each other in the good and bad. I thank God for my friends, whom have allowed me to cry on the shoulder and finally we have encouraged each other.
Most of all, I am thankful for God. Even at my worst, when all I could pray “Help me God”, He was there and He carried me through some of the hardest moments of my life (up to date), when I felt so discouraged, rejected and hopeless.
Over Christmas and the beginning of January, I had lots of time to rest and this helped my thyroid numbers become regulated again! Praise God! Actually ALL of the numbers were in normal range, in Oct. compared to only some numbers being in range for the first time. This was a breakthrough moment for me.
Some of the months and moments in the last year are a blur, others are fresh on my mind; but today I make the choice to look forward and not give up, not on my own strength, but God’s. Recently I watched Captain Marvel (Yes, I am finally catching up on Marvel and I am loving it). I found the first half hard to follow, but I loved the last half. Captain Marvel was made a superhero for someone’s own selfish agenda, but once she accepted her story, she was unstoppable. She now used her powers for good, overcoming the evil around her. The story inspired me to fight this butterfly living in my throat. Acceptance is tough, but it makes us unstoppable. Satan hates it when we use his plans for good. But God never wastes our pain, he actually makes it beautiful! This process makes me think of the transformation of a caterpillar into a beautiful butterfly!
“You intended to harm me, but God intended it all for good. He brought me to this position so I could save the lives of many people.”
~Genesis 50:19
godsheartbeat4kenya 