Monday, May 1, 2017

i'm afraid to share this...

but I think it's really important that you see it. This is the raw reality of this disease. And, now more than ever, I really need your help. #LymeDisease Challenge2017

Friday, April 28, 2017

Insurance cut off coverage & this will be my last week of IV treatment

published to Facebook April 24th, 2017

During class today, I became overcome with the feeling that something terrible was happening. You know- the pit in the stomach, lungs out of breath, speechless type feeling. There's been a little uncertainty with my med coverage lately but this was something more, something so very off. Then, my mom came home with some news: the drug company called to say that insurance has deemed my IV treatments "experimental" & has denied all future coverage. Tomorrow will be my last shipment.
This treatment has been instrumental in giving me my life back, in keeping my brain functioning. Now yes, we'll likely figure something out- we always do. But, I needed 20 minutes to just lay on the floor, scream my eyes out, and wonder when us patients will catch a break. Lyme disease is a long, lonely battle. You may not see us on the nightly news each day, but we're here. We're your neighbors, your students, the pale face passing you on the street- and we're all just trying to survive from one day to the next.
In the time it took you to read this, 18 people were diagnosed with Lyme. See us. Hear us. And next time you get annoyed at your news feed blowing up with Lyme Awareness posts, just keep in mind that somewhere on the other side of that screen is a kid desperately hoping for some government recognition & a bag full of IV meds. This #LymeDiseaseAwarenessMonth I'll be doing the Lyme Disease Challenge and I hope you'll all consider joining me. It may lack "trendiness," A-list celebrities, or the most "Instagram worthy posts." But make no mistake- it's so very needed. #May2017#TakeABiteOutOfLyme
Scared but still standing.
Onward & Upward,

Tuesday, March 28, 2017

Those Trips Around the Sun: Why Birthdays Can be Difficult with Chronic Illness

© Lotus Light Photography -- Gabbi Hicks
Birthdays.  A day to celebrate being alive. One more trip around the sun. You’re another year older and 365 days have passed. Or, 525,600 minutes (but hey, who’s counting?). You’ve grown another year older, gained wisdom, experienced new things, and passed milestones. You dress silly, blow out fires on top of calorie-loaded goodies, and ring in this new stage of your life. (At least that’s what I imagine they’re like). You see, birthdays when you’re chronically ill are a tad bit different. 

They’re odd. They’re bittersweet. Confusing and emotional. I celebrated my first at 13 and they’ve never quite been the same since. When you’re ill, birthdays are a reminder of all the things you’ve missed. Time which you can never get back (though I’m still holding out for that time machine any day now).

It feels a bit like lying deep in a coma, yet completely aware of your surroundings. Trapped. Paralyzed. You hear and see everything around you, suddenly a forced bystander in your own life. Friends move on, drive cars, study school, and quite literally move (away to college). Family ages. Siblings celebrate weddings and graduations. Phones get thinner, presidents get weirder, and planet earth keeps on spinning—yet here you are, stuck inside invisible quicksand.

Imagine waking up one crisp November ’09 morning, ready to take on the day as a healthy 13-year-old kid. You head to school: locker 830. Comfort surrounds you as friends laugh and plan out Friday’s dance. You’ve just won the student council election and next on the agenda is volleyball season. You head to Miss Spychalsky’s science class and sit in your usual spot (2nd row, 5th from the left). Electrons…protons….atomic numbers….what’s my name? No, seriously, you can’t remember your name. And where the heck are you? Suddenly your pen drops, your face droops, and your brain is, well, on a little vacation. Blackness. Blackness. More blackness.

Now wake up in 2017. You could head to school, but the teachers are long gone and the students exist only in dusty, ratted up yearbooks. There, you’ll find your picture as well (though you won’t quite remember taking it). Locker 830 is occupied by your baby cousin and his friends, though he’s a bit taller now and sports a 5 o’clock shadow. Eight years have passed. You’re now turning 21 in a world that just. Keeps. On. Spinning. And, you can't help but wonder "who would I have been" if things had turned out differently.

Birthdays are a cinematic tale. A showing, on repeat, of the 2,738 days that have slipped by you. They’re the high school trips and late night parties that would have been. The tiny, crammed up, but oh’ so proud college dorm room you would’ve displayed and the inevitable first nervous nights away from home. They’re a tale of your loved ones off soon to graduate while you’re going on year four as a freshmen. They’re the high school yearbooks filled with pages unknown to you. They’re a celebration of the passing of another year, and, that’s exactly the problem.

As each birthday approaches, I try to detach from it. “Just another day,” I declare to myself. Not to mention, I’ve got plenty to be excited about: I’ve come a hell of a long way in treatment and I’m pretty darn proud of that. Yet, here I am, seven bittersweet birthdays in (make that eight if you’re reading this come next week) and I can’t help but feel a little sad, a little off come that late March day. I desperately want to hop off the bleachers, tear off that bystander jersey, and start living my life. But, chronic illness works in mysterious ways and for now, I’m making the most of what I have.

Perhaps I don’t have to “fix” my birthdays and come up with the perfect game plan, a road map to my day’s mindset. Maybe they can stay just what they are: a day to reflect on all that I’ve made it through. For every minute I’ve missed, I’ve gained equal back in wisdom, character, and strength. I can’t get my eight years back, but I can live my days fully, never again to take for granted another idle moment. So, I’ll strap on that birthday hat, go along with silly traditions, and celebrate: I survived another year and that’s a pretty big deal!

Thursday, November 10, 2016

If you can read this, that's a pretty big deal...

Life With Neuro Lyme

The process of recovering from Neurological Lyme disease kind of feels like having a light switch controlling your brain. When the lights are on, you can actually accomplish stuff. However, at any given moment the lights can flicker, dim, or simply be turned off. You never know when that switch will be flipped off or when/if it'll be flipped back on. It's a constant state of uncertainty, unpredictability. The thing about recovering is that you take a minute to be frustrated here & there, then get back to appreciating every glimmer of light you receive, whether it be bright, so very dimmed, or a flickering mess. Because when it comes down to it, any of those options are better than the dark.
The human brain is an extraordinary, peculiar mystery. Every time that light dims for me, as I'm sitting there wondering when or if it'll return again, I have to remind myself how unbelievably lucky I am to have come this far since beginning my treatment journey 6 years ago. Life with neuro Lyme makes for a lot of things: fear, unpredictability, and continuous obstacles, but most of all: an intense gratitude for the little things.
If you were able to read this without any thought of a metaphorical switch turning off your "lights" at any moment, take a moment to appreciate your brain, your health. While you work on that, I'll take an extra deep breath and get back to writing my school assignment, with a very dimmed, uncontrollably flickering light of a brain. 
-Onward & Upward-