Warrior Wednesday 1/19/22
Meet Kylee
March 9th, 2012, a day that will forever be burned in my mind. I woke up to the realization that something was desperately wrong.
I had lost all my peripheral vision on my right side. My right eye felt funny, like it was swollen. I thought that maybe it was an ocular migraine; I sincerely hoped it was just an ocular migraine. I got up, hoping that it would pass as I started my day. It didn’t pass. In fact, it got worse as the day went on. My right eye started to bounce as if something was inside the socket preventing it from moving where I needed it to. Later, it slowly stopped tracking with my left eye. With the bouncing and the lag between my eyes, I started to get extremely nauseous.
I called my mom and told her what was going on; I was living with her during one of my college breaks. She said she would be home as soon as she could. But until she got home, I was utterly and completely alone. As the day went on, I tried not to move much because it would make the nausea worse. But when I had to move, I noticed that I was stumbling. Tripping and falling into walls. I thought “what is the matter with you, Kylee? Get it together”. But I couldn’t. I had lost any semblance of balance. This is when the fear kicked into high gear.
Once my mom got home, she helped me to the car. We figured, since it had started with my eye, let’s go see an eye doctor! That was the first time I heard “possible brain tumor”. He, very kindly, told us that he couldn’t do anything to help and sent us to my primary care physician. When we got there, I told my mom “I’m 21, I can go back by myself”. I wanted to seem brave, even in the face of terror.
When my PCP came in to talk to me, it was the second time I heard “possible brain tumor”, along with 4 other terrifying diagnosis. None of which included Multiple Sclerosis. He emphasized how quickly we needed to act: get blood work, order an MRI, and run about a thousand other tests. All of which, in his words, would cost about $15,000. I panicked and completely shut down. When the nurse came to draw my blood, I told her, with tears in my eyes: “I think I need my mom”. She let me go get her and the testing ensued.
I can distinctly remember the sound of the phone ringing when I knew they were calling with my MRI results. “Normal”. Nothing felt so relieving and so disappointing as that one word. I had been living with the same symptoms for over a week. Unable to drive, unable to walk, unable to really see.
My mom, bless her angelic heart, was keeping my family up to date on what was going on. After she told my aunt what the results of the MRI were, my aunt suggested getting the MRI itself to send to her. You see, her brother-in-law is a neuroradiologist. She wanted him to look at it to confirm that it was in fact “normal”. While we waited for him to review my scans, I was sent to an ophthalmologist, since my first symptom was my eye. This was the first time I heard Multiple Sclerosis has a potential diagnosis. I shut down again. I knew people with MS. I had done a report on MS. I knew what the battles were; at least I thought I did. Suddenly “possible brain tumor” didn’t sound so bad. It was treatable, curable even. But we still didn’t have answers.
The greatest gift from God, through the whole diagnosis process was my aunt’s brother-in-law. He told my aunt “she should probably go see a neurologist. There’s a spot that could be nothing, but it could be something”. Even though he couldn’t be specific, we knew that this was the game changer.
Thankfully, at this point, a referral to a neurologist was already in the works. When I finally got in to see him, it was almost April. I had been living with these symptoms for almost a month, and I was DONE.
Once I got in with the neurologist, things started going pretty quickly. I got a second MRI and was scheduled for a lumbar puncture (which was absolute hell, TBH). On April 9, 2012 it was confirmed that I, in fact, had Clinically Isolated Syndrome. Since this was my first official flare, it wasn’t technically considered Multiple Sclerosis yet. They started me on medication in the hopes that I wouldn’t have another flare. But I knew better. I knew my body. I knew it was just a matter of time.
That day, it felt like the rug was ripped right out from under me. That my life was now tainted and somehow mattered less. I had all of these beautiful dreams for my life that shattered in an instant. As dramatic as it sounds, I honestly thought my life was over.
In October of 2012 after another flare up, I was officially diagnosed with Multiple Sclerosis.
It’s been almost 10 years since that 21 year old thought her life was over. It’s been 10 years of growing, learning, crying, laughing, yelling at God, and pleading with Him. I’m almost 31 and my perception of my disease has done a 180 change.
My MS went from being the enemy to a deeply loved life long companion. This journey went from being agonizing to being one of the most sacred parts of my life. It has changed the way I view the world, it has shown me beauty that nothing else could, it has changed the way I see myself.
If I could go back, I would hug that terrified 21 year old and tell her “you hang on, don’t you quit. It’ll be better than anything you ever imagined”.
*Photo of Kylee from 10 years ago*
There are still days where I get annoyed, frustrated, emotional, and even angry. There are days where I feel immense gratitude, love, support, and dignity. I’m so grateful and blessed to say that, while at the beginning the hard days out numbered the good ones, things have changed. I have changed. I do my best to create a positive environment and relationship with my disease not only for myself, but for others as well. I try to use my Instagram to share light and love, even in the darkest of times. And now? The good ALWAYS outweighs the bad.
Follow Kylee’s journey on Instagram @kyleeann1
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