staystrong

Spoonie Poem

Symptom 1 and Symptom 2,

This one’s old, that one’s new.

I thought my body was mine to rule

But it looks like I’m again the fool.

One thing goes wrong after another,

And I’m left attached, feeling smothered.

Brought to my knees again tonight,

Crying, aching, giving up the fight.

If I could sleep it might improve,

But late at night I cannot snooze.

Spoonie life is hard to take,

I may bend but I’ll never break.

xo
Courtney

ps- whoever’s photo I am using as the feature photo please let me know if you see this so I can give credit!

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closed-eyes

When I Close My Eyes

When I close my eyes I see myself dancing around my room getting dressed for the morning.
When I close my eyes, I’m back in my dream job, working my daily 9-5.

When I open my eyes I’m still stuck in this bed with a nightstand full of pill bottles.
When I open my eyes I watch the same shows on Netflix that I’ve seen a million times.

But when my eyes are closed I’m backpacking through Europe with my husband.
When my eyes are closed I’m doing cartwheels and handstands through grassy fields.

But when my eyes are open I am going to the same doctors appointments.
When my eyes are open I get my weekly injections and pray for no side effects.

When I fall asleep at night I dream of the life I could have had, would have had, should have had.
But the truth is, when I fall asleep at night I thrash and groan and cry.
When I fall asleep at night I dream I’m healthy. But I don’t have to wake up to know I’m not.

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It Was All a Dream

If I woke up to a healthy body, would I know how to live that way?

My pain-free life seems so long ago, like it was a different person entirely.

If there was a switch to turn off these illnesses, would I flip it?

Obviously. But I will never forget the lessons the pain taught me.

If even one of my conditions was one day cured, how would that change my life?

Drastically. Each illness has its own unique set of tortuous symptoms.

What would happen if this all went away?

I have gained such a great perspective and I don’t want to lose it.

If this was all a dream, it would have been a nightmare.

A nightmare that I would wake up from if given the chance.

But I don’t know how.

 

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Thank you

Thank You

I know I’m in pain, but you might have it worse.

I can writhe and close my eyes, but you have to watch it.

You glance over helpless or turn your head away, because this is something you can’t fix.

I’m not the girl you fell in love with, I may be a wreck now but you married me healthy.

If you want to leave, you’re not letting it show.

Instead you gather my meds and bring me to the doctors.

Trying to help the only ways you know how, and it’s everything to me.

I toss and turn all night, thrashing around in pain.

I may be keeping you awake as pain steals sleep from us both.

You may have it worse. Helpless, hopeless.

Pain demeans us both, in different ways.

I don’t know how you deal with this.

Watching your loved one suffer and fade away.

I’m half the girl I used to be, and you’re twice the man I could have ever hoped for.

 

Thank You.

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20160527_142943

My name is Courtney and I ruin parties.

Good Afternoon, Friends!

As usual, please check out the Song of the Week page for a rockin’ good tune!

Back to the good stuff, now.

Hi,

My name is Courtney and I ruin parties. I don’t do it intentionally. I don’t mean to draw attention to myself when I need to move because the pain shooting down my legs is unbearable. I don’t drop my cane on purpose so people feel sorry for me. Trust me, the pity is the absolute worst. I don’t leave early to be a buzz kill, and I certainly don’t avoid social gatherings because I’m a loner or a snob. My reality is just different than yours.

I don’t want to miss your wedding or baby shower, I would love to be there to celebrate these moments.
I don’t want to miss concerts or plays, these were my favourite things in the whole world.

The truth is that it kills me that I’m not able to attend places where my walker would be an inconvenience and I hate being the girl who has to call ahead to check for accessibility. The truth is that it’s embarrassing to constantly have to alter the room set-up for optimal comfort, and even then I have to leave earlier than everyone else due to pain, discomfort, or other health related reasons.

Chronic pain and illness makes me stick out like a sore thumb as I limp around and my eyes well up with tears. This does not feel like the girl I was meant to be, but it is the girl I am. I try to make the best out of every situation, but when awkward seating at a restaurant causes me to stand to finish my meal or my legs are squished during an outing with family, I am thrust back into the harsh reality of these illnesses.

I don’t want to rush people into finishing a meal they’re enjoying, or for people to feel bad as they see the discomfort on my face. This is my reality and as much as I try to hide it and make it not so, you are part of this reality also and for that I could not be more sorry.
So if I rsvp no to a future Facebook invite or a proper mailed invitation, I am not trying to be rude, I am trying to spare you and your guests from this reality. The reality of back cushions, leg lifts, mobility aids, and a rattling pill case full purse.
I wish I could be the fun loving chick I once was who could close down a bar like a whiskey shooting bad ass, but this is no longer something I am capable of. Now my resume boasts such goodies as “Netflix Aficionado,” “Pillow Setter Up Extraordinaire,” and “Snack Queen.” If you’re down with that, I’m here for you. In a couch, bed, or otherwise properly comfortable seating situation.

Thank You For Your Understanding,

Courtney

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20160514_113319

Hope for the Hopeless

Good Morning Everyone!

I am back in blogging action!

Before we get started, check out today’s Song of the Week for an awesome Bon Jovi tune!

Now, where was I?
Right, blogging!

I have been having a hard time deciding what to write about. Do people really want to listen to my inner ramblings? Is my writing any good, really? Am I helping anyone at all?

Even if the answer to all of those questions is a resounding no, should I stop writing? Another giant NO!

Writing is so therapeutic, whether anybody reads it, understands it, likes it, or not.

I am not an expert at anything other than being myself, but I have stuff to stay, I have a voice to be heard, and I write words to be read. Even if I’m the only one reading them.

When I was younger I wrote poetry about loves I never experienced, heart break I never knew, and poured out feelings I could only imagine. As I grew I matured in my prose, spilling out angsty tales of my parent’s divorce and my overcoming cancer. It was real, raw, and maybe a touch pretentious. I put away my pen and paper for a decade when I became preoccupied with real romance, education, working three minimum wage jobs, and living my life slightly recklessly.
In the last couple of years, as my body has failed me yet again, I traded in my pen and doodle covered notebook for the ease of a laptop and click-clacked my feelings for hours. That is how my journey into blogging began.
I realized quickly that there was a place for me in the sea of chronically ill folk. My folk. Folks who get me.

Folk is an underrated word.

Every time I experienced a symptom or encountered an awkward situation, or felt the weight of my illnesses about to crash down on my fragile body, I just typed the letters until they became meaningful words that only my people would understand. And they did. They responded so strongly I felt, even if only for that minute, like I was less alone. And isn’t that the point of this anyway?

Isn’t the point of writing, reading, listening, being alive, to connect? To realize we’re not all walking this earth alone?
It would be a huge disservice to ourselves and each other if we seclude ourselves and muffle our voices. Because you might have a story somebody needs to hear.

You might be the answer to someone’s prayers. You might be the one who can write the words to someone else’s story. You might paint the canvas of someone else’s life. You might lend a listening ear to someone who needs to share their soul. You might be the hope for the hopeless. You might be the one to inspire the world.
And even if you’re not, isn’t it worth a try?

Love,

Courtney

 

 

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