5 Things I Want You Know As I Battle Chronic Illness

  1. This isn’t the life I chose & it’s a battle every day.

I didn’t get a choice; this life chose me. Someday it seems impossible to fight the invisible demon, but I’ll fight it till the end of time. I was always taught that I could do anything I set my mind to, so it’s never (and I do mean never) accorded to me to give up– and it never will.

  1. I’m not always going to be positive, but I can promise I’m always searching for the positive. 

Sometimes it’s hard to be positive when life is throwing you a million curve balls. I’ve ran out hands to catch all the balls, but I’ve learned to improvise. Many situations I find myself in are inevitably negative, but I learned from an early age that there is always a positive, somewhere, somehow. So while, at times, it seems I’m looking at something half-empty, I can promise you that I am trying my hardest to find the half-full

  1. My future is uncertain, and that scares me.

 Being a planner, the uncertainty scares me. I don’t even know what tomorrow brings, let alone what my five-year plan looks like. I can tell you what my future kids name are, but I don’t know if I’ll ever get the chance to be a mom (I’ll find a way, that I can promise you). Since my condition is progressive, I can’t tell you what tomorrow brings or how I’ll feel, and the uncertainty alone is enough to bury me. I’m trying to live the life I’ve always dreamed out, but it’s an uphill battle everyday.  

  1. I have to choose my battles- it’s the only way to survive.

I’ve tried being the people pleaser– it doesn’t work. Fighting any disease is scary, fighting a rare disease all on your own? That’s worse than anything you can imagine. I’ve learned that in order to get the best quality of life, I have to listen to what my body is telling me, even if that means upsetting someone, and sometimes that’s yourself. I’ve always had to remind myself, if someone is  meant to be in your life, they’ll understand that it took every ounce of strength you had to cancel plans. Some battles take every ounce of energy that you had for the next 7 days, and half of those aren’t worth the pain.

  1. I’m trying my absolute best.

Somedays it doesn’t seem like it, I know, but trust me, I am. I will never show you just how much this life takes out of me– it would scare even my parents away. But, I am trying, to not only be the best person possible, but also happy & healthy- most days I only get to pick one of those choices.

Meet My Furry Friends!!

I’m probably the most un-lucky, lucky person in the world. Medically speaking, I get all the weird, rare shit that even make the doctors laugh at me. But outside of my bizarre medical history, I’m pretty dang lucky. I have an amazing support system; but mostly I have had the two most amazing service dogs (not that I’m bias).

I got my first Service Dog when I was 8 and he changed my life. King Ralph III was a male lab-golden cross and he was a gentle giant. IMG_1375.JPGHe moved even slower than a snail or at Ralph-pace, as we so lovingly named it. He loved everyone, but he was always partial to our little family. He always knew who needed him & when, always thinking of us before him, right down to his last breath. You see, Ralph thought me a lot, but most of all he taught me about unconditional love.

Ralph went to school with me from 5thgrade to my senior year, so it was only fitting that he would graduate with our class, right? That was the plan… Until the “C-word” forever rocked my world. The day after Christmas 2013, Ralph was diagnosed with Stage 3 Cancer, that spread to his entire body. We were completely devastated, but hopeful for a miracle that maybe he’d make it to May to graduate. Then, our vet dropped a bomb, “He has 3 weeks, tops. I’ve never seen anything this bad”. I was losing my entire world, and there was nothing I could do to stop it. My boy was a fighter though and stayed with me as long as he could (3 & ½ Months). None of us were ready to say goodbye, but we knew it was time & he was living a miserable life, just to make us happy.

I’m thankful for every day I got to spend with Ralph, and though the “I’ll see ya later” rocked my entire world, I wouldn’t change a thing. I love & miss him every day, & 4 and ½ years can’t change that. (Learn more about Ralph!)

For a while, I couldn’t bear the thought for getting another service dog, even though I needed their help. It took me 14 months to face the fact- I needed another assistance dog. I knew this dog could never replace Ralph, but that I’d love them just the same.

I got Patience V in May of 2015, and again, she changed my life. IMG_0055She is also a lab-golden cross, but has more lab in her, whereas Ralph was more golden.  Patience is again my perfect match. She likes to test my patience (ha, fitting) & give me all the sass. She is my partner in crime & is always right by my side. She has a heart of gold & is always my sassy-silly princess.

Although Patience is perfect for me, she decided that she too needed a medical problem to be just like her momma. About a year ago, she was diagnosed with epilepsy, and I’m pretty sure it’s her way of saying “Momma, you gotta keep your eye on me, while I keep mine on you. Also, I’m tired of you getting all of the medical attention.” My sweet PayPay always putting herself in front of the doctors so maybe they’ll stop messing with me. She does a darn good job at always making sure her momma is okay, and I’m forever grateful for that.

Canine Companions for Independence has changed my life & continues to do so every day. Not only have they provided me with two outstanding service dogs, I have gained an entire extended family of puppy raisers, friends, staff, & support. I don’t know where I’d be without the gift of my two four-legged children, but I do know I wouldn’t be near as successful. So, thank you from the bottom of my heart.

I am so grateful that this journey has been paved with pawprints, because I couldn’t do this life without them.

Living A Positive Life

A lot of things seem to be going wrong lately. I have little aches & pains that I just can’t seem to shake & unfortunately, they keep multiplying. I’m in a ton of pain, my fur baby is in pain, and it breaks my heart.  I’ve noticed my personal life suffering because of things (& other people) that I can’t control. It’s hard to take a step back when your world turns into a tornado.

But instead of being Ms. Negative Nelly, and let it consume me, I took a step back. I changed my perspective. I can’t control my chronic aches & pains. I can’t control those around me & how they treat me. I can’t take the pain away from my baby. But what I can do, is change my outlook. I can’t change the people around me, but I can change who I let into my life. I can take steps to actively control my pain.  I can re-evaluate who I let into my life. And most importantly, I can take a step back & embrace the good things in life.

I have an amazing support system of both friends and family. I have the support of amazing doctors doing everything they can to make my pain & illness go away. I have my partner in crime who is always willing to go on any adventure with me. I have the ability to take the time to explore a life many would never know. I can rely on the little things, like getting Iced Tea every day or going to Target multiple times a week.

I’ve learned embrace a small life- filled with daddy-daughter dates, watching tv with my mom, taking my little family (my dog & boyfriend) to get sno-cones, and going on lots of Target trips.

Sure, I could choose to focus on the never-ending pain in my legs, arms, and back. I could choose to live a miserable life, but that’s never been my style.

My illness has tried to suck the light out of my life, but somebody forgot to tell life that I’m tougher than anything it has to throw my way.

I have 124,043, negative things to focus on, but I have 124,044 positive things to focus on. I’ve always lived a life half-full, and that’s how I intend to keep it.

The only thing half empty in my life is my glass of iced-tea.

5 Times Having A Chronic Illness is Like Being an Old Person

The Medicine

Have you ever looked at your grandparent’s medicine cabinet & think “wow, I take all of these medicines?” Yup… Same. You also become a walking pharmacy & can tell any one person “don’t mix this medicine with XYZ” I also have a list of medicines that could make up a short novel, please don’t make me list, spell, or say them all.

The Parking

It’s true, I’m only in it for the parking.

Hiring Help

Yes, I’m twenty-something & yes I already need to hire a caregiver to drive me everywhere and do my hair and take care of me. Yes, It’s really annoying relying on others. All. The. Time. (PS, I know why old people get cranky at this)

The Pain

Don’t tell me I’m too young to know what joint pain/back/knee/neck & everything in-between pain—I can promise you I know. Lucky me, I just get to live with it for much longer than normal!

The Doctor’s Appointments

Have you ever had to write down your symptoms just so you don’t forget to tell your doctor? Or how about having a list of doctors to communicate with weekly just to keep them up to date on everything?

Trust me, living with a chronic illness isn’t for the faint of heart. And it really gives you insight on why old people are so cranky about things.