Adventures as a Recent College Grad Living with Chronic Illness and Training a Service Dog

Sunday, June 29, 2014

There's More than Cancer

Before you all start freaking out- NO, I do NOT have cancer.

Everyone now a days has been affected by cancer in some way- themselves, their family, or a friend. It's an invisible monster of abnormal cells that ruins lives. It's indiscriminate in choosing its victims and leaves a path of destruction in its wake. You all know this. 

What brings me to write this is a thought that's been brewing for a few weeks now. I read The Fault in Our Stars, and I plan on going to see the movie too. I succumbed to the entertainment industry capitalizing on "the cancer story" and watched ABCFamily's new show- Chasing Life, about a 24 year old young woman with leukemia. Why? I honestly don't know. But, I did. 

I kept watching, just like I kept reading (which was really via listening to the audiobook). I can't read for fun. I watched Chasing Life while being hooked up to an IV bag of fluids, in my bedroom, in hopes to be able to run errands tomorrow. I still rely entirely on a wheelchair to get around- July will be one year since being able to walk. Max sleeps at the foot of my bed. 

I can't read for fun because I struggle to read anything lengthy at all. Multiple concussions from riding and falls from fainting contribute to that. I'm on regular IV fluids because I can't ever seem to retain enough to maintain my blood pressure. Also, I struggle to keep my body temperature down and IV fluids help me from overheating on hot days. I can't walk because of the crappy blood pressure. I love Max more than life itself, he's my guardian angel. As much as I love him, and as great as he is at working as my Service Dog- I wish that he could stay home and sleep all day like other dogs. I wish he didn't need to be there always for the 'just in case'.

The reason I found myself so tied to TFIOS and Chasing Life, is because they are relatable. I understand the barriers of not wanting to tell your friends or parents things about your health. I understand the overwhelming feelings of trying to decide what's the priority- work or having a social life. I understand the rarity of finding that one person that you can share everything with, and knowing that they will always be there with a hug or funny quote to cheer you up. At the same time, I understand the need to just sit there and cry because the situation that life has currently presented you just plain sucks.

How could I possibly understand all of these themes? I don't have cancer. I live with chronic illness. I have Autoimmune Autonomic Ganglionopathy, Inappropriate Sinus Tachycardia, and Gastroparesis- kudos if you think you might have pronounced any of those correctly in your head- it took me months.

There's a look that the public gives you when you say "I have cancer." It's a look that says "Awww", "How horrible for you" and "I feel so bad for you" all without a single word leaving another person's mouth. On the other hand, in TFIOS, they described them as 'cancer perks'- they are the little things that people might do because you have cancer: going to the front of a long line, get a special seat at a sporting event, or even having a fundraiser for your cause.

Back to one year ago when I was walking- I still had AAG, IST, and GP (I typically just say AAG as that's enough for people to give you a confused face). They are each invisible illnesses. Walking past me on the sidewalk, you can't see that my nervous system fails in the fight against gravity with every step, you can't see that my resting heart rate is double that of an average person my age, and you can't see that my stomach struggles to function. I got the look that 'how dare she park in that handicap spot. How horrible for her to use her grandparent's tag like that.' I got the look that people assume that I'm lazy. When explaining that I have a chronic illness, at times I was treated with the same stigma as mental illness, and that I was just another lazy millennial that didn't want to get a job. (I love going to school. I LOVE my job.) I feel pressure to not move my legs in public, because I'm now in a wheelchair, and the general assumption is wheelchair = paralysis. I've heard the whispers and had the poignant stares of people having the nerve to call me a faker because I crossed my legs while in my wheelchair.

My close friends and colleagues all have taken the time to understand this, and that is why I keep them close to me. This is more of a general perspective of my experience out in 'the real world'.

To avoid more meandering- here's that thought that's been brewing for weeks now: There is more out there than cancer. Cancer is a horrible, life-altering, evil disease. Beyond cancer, there are other horrible diseases of all systems of the body. Everybody has their own battle, and I just wanted to put it out there as a small reminder to have compassion for everyone going through hard times- whether it's cancer, chronic illness, or even mental illness. Just because you might not understand it, doesn't mean that person is any less deserving of your help or compassion.

More about the great parallels between The Fault in Our Stars and Chronic Illness:
Huffington Post- The Truths Behind The Fault In Our Stars

Saturday, June 28, 2014

Welcome to Texas- Here, have some RAIN

From the license plates to the oversized parking spots for trucks and everything having some sort of "Texas Edition", I would believe that I've moved to Texas. What has be confused- it has rained or thunder-stormed Every Single Day. 

But alas, we are here in East Texas! After our 20 hour journey from Northern Virginia to get here, we had strongly hoped for a smooth move-in process for our afternoon of unloading the very stuffed Rav4 and my Mazda. I went into the office at my apartment complex, and they didn't know I was coming... I signed my contract in April, and called to confirm 2 days before getting there. After 30 minutes, they assigned me a room- drove to the front of the building that my room was going to be in- no handicap parking. Are you freaking kidding me!?! Drive back up to the office, and after TWO HOURS of waiting, they came up with the idea to make one of the parking spots designated as a handicapped spot. But wait! the room they assigned me? It wasn't handicap accessible! Another half hour and we get the right room number, and all should be right. Oh but wait... it hadn't been cleaned for a new tenant; and the old one moved out in JANUARY. Dirty carpet, dirty bathroom, holes in the wall- oh my.

To wrap this part of the saga up quickly- I have the absolute best parents in the world. My mom cleaned almost the entire time she was here, and my dad (Mr. Handyman) installed another grab bar in the bathroom, changed the shower head, installed a storage cabinet, put up a curtain rod, put up towel bars, and installed lower closet organizers. Also, on Monday the maintenance man for the complex, Kirk (insert fantastic Gilmore Girls reference), came and fixed everything else, and has been really awesome since.

Work has been beyond awesome. I watched the US vs. Portugal game with my new co-workers the Sunday that I moved in, started work on Wednesday, went out that night for my birthday :), and then the whole department had a "field trip" to go watch the US vs. Germany game. I LOVE MY JOB!!!

Max has had a couple of rough days adjusting, but we're working through it. He's having trouble staying in his spot at work while I go across the room, so I have a feeling that some more Cheese Ritz-Bits (his favorite) are going to be coming to work to do some training. Around the apartment he's doing really great with now pulling open doors and shutting them! We've had some barking issues with the window in my bedroom now being at his height and he feels the need to tell me about every person who walks by- it's a lot busier than my place in Blacksburg, but that's just one more thing we're working on, and is getting better by the day.

Until next time...

Friday, June 13, 2014

Making a Habit

I remember back in elementary school that I had some teacher that would repeatedly say that if you do something consistently for a week, then it becomes a habit. Well, I'm calling BS because I updated this regularly for over a week, and now it's been almost 2 weeks of it being neglected.

I've been on vacation with my parents in Nags Head, and Max has been having his own vacation back in Lynchburg with his trainer for a last two weeks of "Boot Camp". I call it boot camp, but really- he gets to play with other dogs, go hiking in the woods, go on field trips to PetsMart, and there's even a swimming pool- he's pretty much on vacation too. I head back to reality tomorrow to my parent's place in NoVA and then pick up Max next Wednesday.

Scary realization: The 10 day forecast now includes me in Texas. Eek! Lots of packing, a bit more shopping, and a ton of driving in the days ahead. 

Max at 'camp'