Profile of An Overachieving Spoonie

Profile of An Overachieving Spoonie

My schedule is jam packed with work, assignments, writing, and homework. Occasionally, there's a hair appointment or an actual meal - you know, one where I'm not working or studying, but just eating and maybe conversing. But most of the time, it's all work and no play making this Jane a dull girl. I

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Playing The Cards We're Dealt

Playing The Cards We’re Dealt

I have been accused of being many things in my life, but I can assure you that one of them has never been being “too positive”. I have never been the type of person to intently stare at that glass of water and size it up as being anything but half-empty. It’s the way I’m hardwired. I am, by

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Life's Punching Bag

Life’s Punching Bag

I feel like life's a punching bag. I'm forever knocked down by pain or knocked out by opiates. At least it's consistent in its beatings. Each day brings the knowledge that something will be off...something will be wrong. I don't know what it will be, nor do I know the level at which it will disable

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I'm Still Me....Just Slightly Modified

I’m Still Me….Just Slightly Modified

A lot has changed in the 14 years since I first got sick. I've gotten diagnoses, lost diagnoses, lost old friends, gained new ones, given up on old dreams and discovered new plans for the future. However, even though the years since diagnosis have been uncertain and will likely continue to be that w

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It's All Greek To Some

It’s All Greek To Some

Recently, I needed some physical therapy. I had a torn core muscle, nothing too serious. The Physical Therapist asked me, “So, you’re young and healthy, right?” Um, NO. I handed him my large excel spreadsheet that I have with me at all times listing my medications, conditions, hospitalization

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I'm Thankful He Doesn't

I’m Thankful He Doesn’t “Get It”

“Your cells react to bacteria and viruses differently than mine. You don't get sick, I do. That's also clear…We're on the same curve, just on opposite ends.” Elijah Price, “Unbreakable.” I want to introduce you to my brother Justin. He’s three years younger than me; same parents, same

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Walking To A Place Where I Belonged

Walking To A Place Where I Belonged

How can a simple walk make me find a place where I fit, where I’m not looked down upon for the team of medical specialists I have on board or the number of ailments I battle?  It surprised even myself as I thought I wouldn’t be able to find that community outside of the “box” but found it I

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I've Learned...

I’ve Learned…

This hasn't been an easy road to travel the past 14 years. There's been a lot of moments I've wished I could get back, a lot that failed to go as planned. I've faced a lot of disappointments and seen a lot in my life change. I've learned that I'm not alone. I've found community and people who can

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Parenting From The Couch

Parenting From The Couch

Lauren Bacall once said “I'm not a sedentary person. I've always been active.” I stumbled upon this quote when tinkering online while my kids played and was something I could relate to back in the day. I say that with a wistful look as I can no longer say I’m that active person. For me I have

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The Perfect Spoonie

The Perfect Spoonie

From day one, I have been a perfectionist. I know that when I was in preschool, the teacher told my parents that if I could not cut with those rounded tip scissors on the exact line, then I just wouldn’t do it. And that was only the beginning of my quest for perfection. But that’s a pretty diffi

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