The Story of Kytten
Sometimes I view my life, my story if you will, as having two books. The first book is titled "Before" and the second is titled "After". They're separate books, but are still connected by a bridge, a link, a chain. And that bridge is Multiple Sclerosis.
In the first book was my life "before" MS. Which isn't technically accurate. I could say "before an official diagnosis" but that wouldn't be technically accurate either. I guess you could call it my life "before" I moved to Kentucky from Ohio and changed everything about my life. You see, "before" I was able to work. I was able to do the long shifts, working hard in the heat and the terrible conditions. Whether it was back of house at a restaurant, sometimes making milkshakes, sometimes putting burgers and fries on a plate (and /everything else/ that goes with it) or it was working for 5 years at a gas station, dealing with a crappy boss and crazy customers, getting screamed and cussed at for the most menial thing that wasn't anywhere near *my* fault, I was still ABLE to do all of that.
This "before" me feels like a distant memory. Like an entirely different person.
The "after" me is completely new. Changed in ways that I never thought I would change in.
You see, the "after" story starts in July of 2012 we, my fiancé (Dave, I call him Sir more often than not) and I, moved down to Kentucky from Ohio to take care of my ailing elderly grandmother. Well, great-grandmother. But that's a whole other story, and if I get in to that we'll be here all day.
But I digress. We moved down to take care of her.
It was...rough, to say the least. She was very set in her ways. But I loved her and, even though I hated it, I loved her enough to do this for her. This work, the menial labor, that was a lot like what I was doing "before", standing for long periods, cleaning, cooking, helping her bathe, helping her get dressed, all those kinds of things. Of course, it wasn't exactly like what I was doing "before", but the same kinds of principles applied.
[Now, fair warning before I continue: A lot of this is cobbled together from things I've been told, and the accounts of things happening that I pulled from Facebook. I remember almost none of this, it's all kind of a blur.]
But by the end of the year, 2012, and into the beginning of 2013 I started feeling...not well. Not that I had been entirely 'well' before, but this was...different in a way that I just couldn't quite explain. At first I thought it was just stress, the terrible hours, the manual labor. But then I started getting seriously ill. Throwing up constantly, extremely dizzy, light-headed. (The constant "are you pregnant? Hehe you're totally pregnant!" from my family wasn't helping either. *snort*) To the point that I went to the ER. They gave me some dizzy pills and some anti-nausea pills and were done with it.
But I wasn't done with it. End of January I went back to the ER again. Labryinthitis, they called it. Gave me more pills, and an antibiotic. Told me I'd feel right as rain soon enough.
But I didn't. I didn't really feel...better. But I was better...enough, I suppose.
End of March/beginning of April, Sir's gramma died, and we went to the funeral. It was a few hours drive away in West Virginia. While there, I started to feel ill. Really ill. I thought maybe it was an allergic reaction to something or a cold? Had no idea.
(Funny side-story: On the way home from the funeral, I had some ginger ale in a to-go cup from... I think it was Wendy's or something like that. Regardless, it was down in the cupholder. Ginger ale is kinda my go to drink when I'm not feeling well. Well, on the freeway, we got cut off by a semi. Sir slammed on the breaks and the center console, the arm rest, broke, slid forward and decapitated the cup, sending all of the liquid sloshing down into the little cubby down below the radio...where our cell phone was. So RIP that cell phone.)
I kept getting sicker and sicker, my eyes wouldn't focus, the left side of my face went numb, I was feeling really pukey and dizzy and was having trouble using the bathroom...it was pretty bad. My aunt, a nurse, demanded I go to the ER. So I did.
They told me it was Bells Palsy this time. Got prescribed prednisone and an antiviral and came home. I was supposed to take this antiviral FIVE TIMES A DAY. And it turns out I was allergic to it! So I stopped taking it, because it was making me puke.
By this point in time, the symptoms were so bad that I couldn't eat, because all I was doing was vomiting. So I was basically on a liquid diet. I could only actually use the bathroom when I was puking.
So, back I went to the hospital. White blood cells were up, supposedly the other symptoms were a side effect of the medicines I was on and I had a bad infection....somewhere.
Again, I was supposed to feel better.
Again, I didn't.
If anything, I got worse.
My aunt was livid. She told me to go back to the hospital and not leave until I got a definitive diagnosis. She knew something bad was wrong, and it wasn't Labrynthitis or Bells palsy or any of that stuff.
Back again I went.
They sent me for an MRI, ran some blood work, and cathed me. Having a catheter is a very...unique experience. And I wouldn't recommend it to anyone, to be honest. It's really...not fun.
Once the MRI came back, the ER doctor got into contact with another, at the time unknown but would later become my neurologist, doctor, to look over the MRIs. They then sent me back for another round, with contrast this time.
So, with that done, comes the waiting game.
The ER doctor comes back in, finally, after what felt like hours, and sits down. He looks at me and tells me He is 95% certain that I have MS, they have to do a spinal tap to confirm it, but they're admitting me. This was the night of April 27th.
The spinal tap came back confirming it. April 28th, 2013, I was officially diagnosed with Multiple Sclerosis.
I found out that the MS is in my brain stem, pretty badly, and all over my brain, but centered mostly on the left side.
Apparently, I was extremely...extremely ill. I was put into the CCU, the critical care unit, for a few days, while they pumped me full of steroids in the hopes of getting this under control.
They moved me to a private room up on the...2nd floor iirc, and the therapy began. Occupational, speech, physical. Physical to help, hopefully, with the walking. Occupational to help, hopefully, with the trouble I had with my fingers and arms. Speech to help with the numbness, the inability to swallow, the inability to hold air in my mouth without it escaping.
A few days after that they put me up on the 4th floor, the therapy floor, and installed a PICC line. Peripherally Inserted Central Catheter. It was an iv, basically, that they inserted into my arm and it went through the vein to my heart. It's used when you need to keep an IV in someone for long periods of time etc. I hated it, it was the worst. I still have a scar from it. Anyways.
Lots of therapy, lots more steroids, and then, on the 8th of May, I was let go.
And then, 8 days later, my grandmother died.
Cue a long, crazy ride of moving and struggling with the government attempting to get help and...
It's been a very long, long road, and it's not ending any time soon.
i've progressed to the point where I have a cane that I use almost all the time while walking, especially while i'm outside. My spinal column has lesions, my brain has a mass of lesions on the left side... I'm in the middle of switching medicines (Tecfidera to Tysabri) and fighting with the government again and...
All in all, I may look, or sound, like I'm doing alright, but I'm not. Every time I have a new or worsening symptom, I'm terrified it's a relapse, a new attack. The laundry list of side effects from the medicine are enough to shock the s#!t out of you. Every day is a struggle.
But I'm still fighting. I'm still going. Even if there are times where I'm ready to give up, I don't.
I have my family and my friends, and most importantly my fiancé, to keep me going.
Does your employer provide workplace accommodations due to your MS?