My Not-So Heavenly Reality

by Heaven Palffy

Growing up, I always heard about people who had these rare disorders and how they are forced to live their lives around their disorder and I always thought, “Gosh, I am so lucky to not have anything like that.” I suppose I jinxed myself by saying this because when I was 17, I started experiencing the drooping of my eyelids and double vision. What I thought to be need of a new prescription in my eyes and my parents speculated to be my beginning to experiment with drugs, turned into something that would forever change my life.

Did I find it odd that my eyes for some reason had become so heavy that my lids were now resting at a droop and I could not physically open them any wider than they already were? Of course, but I attributed this to perhaps I wasn’t getting enough sleep or maybe I was due for another eye exam and needed to have my prescription changed. My mother, however, speculated something more. She began to constantly question my new appearance because at first glance, I looked under the influence. This sparked a lot of arguments for next three months between her and I. My biological father had been addicted to drugs and alcohol and after spending 17 years as a casualty of someone who was an addict, I vowed I would never touch any mind altering substances. I could not believe my mother, the woman who knew first hand what being close to someone who was addicted could do would even speculate that I would even think to smoke. I could not begin to explain my outright frustration with this, but she eventually opened her mind to the fact this could simply be the need to have my eyes examined.

The day we went to the optometrist, I was beyond angry with myself, even the woman administering the sight tests seemed to think I was under the influence. I knew I wasn’t using drugs, but it made me angry that my body was acting against me and I couldn’t do anything about it. Finally, the optometrist speculated that I had an eye lid infection from my contacts and prescribed me steroid eye drops and scheduled a follow up visit. One week later, I had absolutely no improvement and this concerned the doctor. She referred me to a neurologist. On December 13, 2019., the diagnosis came that would change my life forever.

Myasthenia Gravis (MG), you’d think after having to type it so many times, I’d know how to spell it, but I still had to google it as I write this. The original diagnosis came originally Ocular Myasthenia Gravis, a common misdiagnosis especially if found early on. However, what occurs in the body is the same. ACH, a chemical the brain makes to assist in muscle contraction, is blocked at the neuromuscular junction preventing it from getting to the muscles. My neurologist prescribed me Mestinon, a very common drug used to treat both MG and OMG), I had blood work done, and scheduled an EMG, a test done to detect neuromuscular abnormalities via needles that administer electrical shocks to the nerves to measure a reaction time. This was only the beginning of my new reality, however, because from that day forward, everything I thought I knew about my body would change.

As the months would follow, my health began to decline further. Not only was the mestinon seeming to not help, I was now choking on food, experiencing upper body weakness, and having slurred speech. These are all symptoms of generalized MG. So after months of constant frustration with my body, a relapse into my clinical depression, and feeling like a side show freak, I went back to the neurologist and explained I was only getting worse. Within 30 minutes, I had three of the best pediatric neurologists in my state on my case. This was clearly not Ocular Myasthenia Gravis, this was the generalized and it was spreading to the rest of my body. I was put on four new medications and the neurologist who would be performing my EMG now wanted to have me tested as soon as it was possible. That EMG test would eventually happen a week earlier than originally scheduled and he would after the test inform my mother and I that I had “a pretty severe case of Myasthenia Gravis”. This just confirmed what we already knew. This was my life now, I was chronically ill.

It has been almost six months since my original diagnosis and every single day is a teaching moment. I am on seven different medications for my MG, including the Mestinon which is to be taken every two hours, and while these medications allow me to have clear vision, eliminate the eye lid drooping , and allow me to eat without the risk of choking, I still am forced to limit the amount of energy I use throughout the day. I am easily tired by the simplest tasks and work every single day to gain back the strength I lost in my muscles. Even on my medicine, I do experience the occasional flair up which consists of visible muscle spams in my face and legs. I’d be lying if I said my mental health was perfect, it’s not, being chronically ill takes a massive toll on your mental health and self esteem, but it is so important to have a group of people around you who support you. I am learning to accept that this is my new reality, it’s not the reality that I want and I now have to consider my health in also every single decision I make involving a physical change in my body (i.e. a future pregnancy) and how often and for how long I am up and on my feet (i.e. working a part time or full time job). I have never done well with change, so as I’m sure you can imagine, adjusting is hard, but this is who I am. I am still the same stubborn, goofy, overly caring, fun loving, young woman I was, but now I also possess a trait that makes me unique from everyone else something that, literally, makes me rare, but I am still me.

You can follow Heaven on instagram @heavenpalffy, and read her own blog linked below!!

https://heavenpalffy02.wixsite.com/mysite