My Body Has a Mind of Its Own

I’ve always felt my body and my mind live in two different realms, particularly when it comes to my health. I was born at 27 weeks in the summer of 1993. My mother underwent a liver transplant seven weeks prior to my early arrival and was looking forward to my birth sometime in the fall. But as the universe would have it, I arrived in an afternoon in August, weighing 2lbs 2oz. I stayed in the hospital until January of ’94 and I was hooked up to oxygen for the first three years of my life. This event has foreshadowed all the health issues I’ve experienced in the last twenty-five years of my life.

I’m not someone to complain about myself. I rarely ask “why me” and I’m always focused on looking for answers. Whether it’s with my lungs and how they’re functioning as someone who is thirty years older than I am now or my different leg lengths that causes my right hip to stick out more than my left, I’m all about finding out what’s wrong in order to treat it. Throughout the various health obstacles that have occurred during my young life, I always try to stay as positive as possible and keep on pushing forward.

That was until my thyroid became the final straw. I’ve never been fond of needles and I ran away from getting my blood drawn for as long as possible. I didn’t call doctors back because of the negative experiences of past labs put me off from getting tested. I waited ten months between getting my blood tested and when I finally returned for a yearly physical I put off for about six months or so, my thyroid numbers were unlike anything any of the doctor’s who saw them had ever seen.

This discovery has sent me on a journey over the past year of trying to come to terms with my thyroid while having everything be a jumbled mystery. In February of last year, I started taking a medication for Hashimoto’s called Synthroid. Throughout the spring and summer, there would be a frequency of dose changes to try to find out what my thyroid could handle and eventually become comfortable with.

On Labor Day, I woke up from a nap while traveling from Minnesota to Colorado. My dad and I went into a McDonald’s to get breakfast and I went into the restroom. I noticed almost immediately when looking in the mirror how puffy my eyes appeared. I was taken aback by the change in this appearance. I was confused as to what could be causing this. Months later, when looking through past selfies I had taken, I would realize that this puffiness actually began in July.

In early October, things took a turn for weird when I woke up with double vision. I went to my eye doctor, thinking (and hoping) she would tell me I was crazy and my vision was fine. She did not tell me this and it took several weeks to get a diagnosis on my eyes. The third week in October, after visiting an ophthalmologist, I was diagnosed with hypothyroid Grave’s eye disease.

In late December, I visited my endocrinologist for a three month follow up. My labs were very abnormal and because I was experiencing heart palpitations and my eyes were still off (though I was no longer experiencing double vision), my doctor decided to take me off the Synthroid. I was told I was a mystery and that she wanted to track my labs to see if a pattern occurred.

Five days later, after going off the medication, I had another lab test to make sure it wasn’t a lab error. My thyroid came back as normal functioning for the first time in over two years. While the Hashimoto’s antibodies were normal and the Grave’s was still high, my doctor decided just to monitor my labs closely. She said my body is playing tug of war between the Hashimoto’s and Grave’s and it has to be watched to see what’s the best way to go about treating this. A few weeks ago, my double vision returned and last week, it took an intense turn. Yesterday, I got labs done again to see how my thyroid is doing and how it could be impacting my sudden shift in double vision.

While I’ve written a little about this journey, I’ve been afraid to really dive into how it has impacted my life because it took me a long time to accept that initial diagnosis almost a year ago. It’s not easy to accept something you can’t see with your own eyes. With my past diseases and diagnoses, I could physically see or feel what was happening within my body. And while there were some signs that my thyroid was off, I attributed the weight gain and other things to different parts of my life. Once you convince yourself of something, it takes some time to rewire that original thought into what it really is.

Over the last few years, writing has become a way to deal with whatever I’m experiencing. And when all of this happened (both in February and October), I backed away from writing about how I was feeling because I was in denial of what was happening to me. I dove into other things to distract myself from what I was experiencing because it was, and still can be, very overwhelming.

When I could physically see something was off with my eyes, I instantly wanted answers because I knew something was really off. I went back to being the person who cared about finding the answers to what could be going on with my eyes. But when I was told it was because of my thyroid, I was in denial about it for a long time. Because I couldn’t wrap my head around the fact that my eyes were messed up because of something I couldn’t see. When I was told my thyroid and what was happening to me was a mystery, my initial reaction wasn’t wanting to find answers, it was an unsettling and scary feeling. While I’m grateful for my doctor’s honesty, it’s not necessarily the answer I wanted to hear.

I began writing this essay in October. And by begin, I mean I came up with a title. I knew I wanted to write about my experience of not knowing what was going on with my eyes. But then I got an answer and I put this essay aside. I was scared to write about it because writing about it means it’s real. I’m now five months into my thyroid eye journey and next week will mark the year anniversary of beginning my thyroid treatment. A year ago, I didn’t think much of what could happen. Now I’m here and I’m still processing it.

Last week, when my eyes got really bad, I got really scared because I didn’t know what might be happening. As I’m finishing writing this essay, I’m still not sure what the next steps will be. But I’m finally getting to a place where finding the answers are more important to me than the fear of not knowing what could be happening. I can breathe through my anxiety around getting my labs done. I can remember how far I’ve come to remind myself that this has been and always will be apart of my life in one form or another. And that’s okay.