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-


Monday, October 31, 2016

A stranger harassed me for using my disabled parking permit- here's my response

Some studies say that up to 96% of chronic illness is "invisible." With 19% of America's population having some form of disability, taking a minute to educate yourself can make a world of difference. 

Click the link below to watch my new video: 

Monday, March 21, 2016

Tomorrow is a new day

A peak inside my lyme-filled, neurologically impaired, frustrated brain:

Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We chronic pain patients become a pro at hiding pain, to blend in. It's just part of the job.

Then there's the lungs. Every labored breath feels like a 40 pound bag of flour is sitting on your chest. Worst of all is the brain. As a former athlete, I spent 4 years needing a wheelchair and was often bed-bound. Trapped, like a prison cell. But the bars are invisible, and to the naked eye it looks like nothing's wrong.

The physical symptoms aren't nearly the worst though. It's the neurological stuff. I can handle pain, but when your brain is under attack, infested with millions of spirochetes spiraling their way into every crevice of your tissue, cells, muscles. When your brain is in a battle, you're not you. You lose your personality. In a matter of a week your reading capacity drops grade levels. Your IQ drops and if you're lucky maybe some of it will come back one day. I cannot put into words the feeling when you can't remember how to pick up a pencil & write. You can sit there for hours and hours, simply staring at it. But nothing changes. You're no longer you.

This is the reality of advanced neurological Lyme disease. I've come a long way. A hell of a long way. There's a light at the end of the tunnel, that I'm sure of. But some days, those days where you're alive but not really living, subsisting off pain narcotics just to get through the night, those days feel like that light is an oncoming train. That said, there's tomorrows for a reason. Tonight might be one of those nights, but I know without a doubt, there'll always be better days to come. So you take your treatment, distract yourself from the pain, & live to fight another day.

This is my life as an advanced tick-borne disease victim. And sometimes the only relief available is to say to yourself "tomorrow is a new day."

Onward & Upward,

Friday, March 18, 2016

"Don't waste a single second, promise."

The other day I was moving around the furniture in my room, when out of nowhere flew out a piece of paper. It was a letter that I must have written to myself years ago. I'm not sure where I was at in treatment at that point that lead me to write this, but it's clearly a message I wanted myself to remember and I found it on a day when I truly needed it! Sometimes it's hard to see out of the fog past where you are at this time and place, but the universe always seems to nudge you in the right direction. 

Tuesday, March 15, 2016

Keep calm and drink coffee: Lyme disease edition

Today is Tuesday, meaning my spring break is near half-way over. I've been struggling a lot with my symptoms and haven't left my bed much. But some much needed rest isn't the worst! I'm sitting here at Starbucks- I thought maybe if I was in a place where I couldn't simply go lay down when I didn't feel good, that I'd be able to get some work done. I have a paper due the first day back from break.

My coffee hasn't quite kicked in yet and at this point, the table looks like an awful comfy napping spot. Perhaps, miraculously, writing on my blog here will give me that boost I need. But first, a little people-watching.

Admit it, we all do this at Starbucks. Over-priced coffee and some fresh gossip: the two things you can count on here! It's evident the area high schools must be on spring break too. I'm surrounded by Ugg boots, excessive piercings, and about a dozen "non-fat, sugar-free white mocha Frappuccinos." If I hear one more "I literally can't even," my eyes may just roll out of my head. Okay, excuse the condescending tone. It's now also been made evident to me that my pain killers haven't quite kicked in yet.

Back to the people-watching; there's some even better gossip coming from the group of couches, this time in Spanish. At least my two semesters of college Spanish payed off for something. I really liked those classes, they made sense. Simply learn the words and put them all together, not much thinking on your own part. I enjoy my English class too, but it’s more of a challenge. First, there’s the readings. They’re all great works of art, ones every college student should read at some point. However, reading comes very difficult for me since the onset of my illness. I read each essay over and over and over again. Each word seems to go in my mind and gets lost in the fog, never to be seen again. Needless to say, it's a struggle. But forget that, then there’s the writing.

I went into this class very much so lacking confidence. The last formal English class I attended was middle school. I’d never had to develop a thesis statement, formulate an outline, or do a works cited page. My knowledge starts and ends with “use the hamburger method for writing,” and what to do with that I’m not quite sure. So, I go to every class I’m able to- doesn’t matter if I’ve spent the night in the ER and still have needles and tubes sticking in me, you’ll find me in room 012, sitting in the 2nd row with my cane and meds, attempting to participate. I need to put in my every effort possible, and if I fail, at least I’ll know I did everything I could.

So that brings me to my current assignment: a four-page thesis-support essay on poverty. Sounds feasible, right? Agreed! But with a brain and body filled with spirochetes whose life goal is to make your every move a struggle, just about anything can be difficult. "But, you're writing this, so that means you should be able to write your essay then, correct?" I would think so too. I just simply can’t seem to get the thoughts floating around in my fog-filled brain to come down and form a coherent paper. I could re-visit our poverty readings and gain some ideas, but between the short-term memory loss and brain fatigue, I can’t seem to read past the intro paragraphs. Nothing clicks. That was made clear to me after many hours spent staring at papers this week.

That brings me to right now: four in the afternoon, slurping up my last sip of iced coffee and likely looking productive to the other customers, (unaware that I'm typing up my silly thoughts on what is one step away from being a diary). I can't help but contemplate how, if I struggle so much with a basic 3 credit class, how on earth I will ever get a college degree. That question must day at a time: I made that promise to myself. So, back to my homework I shall go.

Until next time,

Friday, March 11, 2016

From frustration to motivation

A peak inside the mind of a chronically ill student, unfiltered.

I'm sitting in Colburg lounge, one of the nice dorms here on campus. There's a stretch of windows with an encapsulating view of the lake, one too perfect to describe in words. I tend to hide out here. This is my happy place. Correction: this was my happy place.

Every other minute, a different student walks through with their luggage & a wide grin of relief. Today begins spring break. There's laughing. Chatting. Talking of plans. They all seem to have a skip in their step. After the long dull winter, the bright sun & fresh air has Wisconsinites in bliss. Normally I would be walking out to the parking lot just like them. However, a brutal albeit brief series of seizures on the concrete outside Colburg last week has me unable to drive and not in the greatest shape.

Today is an okay day. I made it here with the help of my cane. I'm in severe pain & neurologically impaired to the point where it's difficult to function, but I'm out of bed, I'm conscious and alive, and so that makes today an okay day. Maybe even a good one in the grand scheme of things. But an "okay" day in the eyes of a chronically ill patient doesn't constitute what's needed for an okay day in college. I need to be at the top of my game. I cannot get anything out of class if every word I read is floating, flashing, completely incoherent. I cannot function in class if my hands are numb, unable to write or take notes. If the pain's too bad to focus, if a layer of fog is settling within my brain, making words float in and out with no apparent organization. So today is a good day for a patient who's simply grateful for the little things, but a mess of a day for a student.

By this point dozens of people have passed by. I don't know anyone at school yet, so here I am, penning down my random thoughts. I can't quite remember how I got here in the building, when I sat down, much less what I wanted to achieve with this writing. Lyme brain will do that to you. I'm grateful to be in college. Many lyme friends of mine haven't been fortunate enough to even graduate yet; I'm a lucky one.

I love school but at times I hate it. My once well-working brain takes ten times as long to do something & has to try ten times as hard just to get the same outcome as everyone else. That's okay. I'm at peace with my journey & grateful for my adversities. But on days like today, when no matter how much I try to overpower, Lyme controls my every move. Days like these I can't help but be a little frustrated. That's okay too. As long as I remember to turn that frustration into motivation. So maybe today was just an okay day, but I'll never stop fighting & hoping for better days.

Love & light to all my chronic illness warriors out there

-Onward & Upward-