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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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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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Fibromyalgia Awareness Day!

Hello Friends, Family, Acquaintances, Awesome Readers,

Before I get into it, please check out the Song of the Week page for an awesome, fighting tune!

I am sitting here with throbbing shoulders, swollen fingers, and an aching head because what I’m about to write needs to be written.

I have fibromyalgia. It is not my only diagnosis but it is the most debated of my illnesses. I’m very lucky that I have an amazing team of doctors that believe in my pain and chronic illnesses enough to diagnose and attempt to treat said conditions. That being said, I know so many friends around the world who are not so lucky.

I have rheumatoid arthritis and because of that I already had a rheumatologist to diagnose my fibromyalgia. If I did not already have a specialist I wonder how long I would have been waiting for that diagnosis. My guess is I’d still be waiting, in agony, for someone to believe in my pain and help me. For a fibromyalgia warrior, or really any person in the world, living in chronic, debilitating pain with no answers and no treatment is not only maddening, it’s downright unbearable.

What makes it worse, is people telling you your pain isn’t real, it’s all in your head, or if you just exercise more or take this magic potion everything will be better. It is real. And there is so much evidence now to back it up that your argument is not only unwarranted, it is wrong and doing far more harm than good.

I remember the day I was diagnosed with fibromyalgia like it was yesterday. I remember what I was wearing (purple shorts and a white and purple t-shirt), I remember the doctors office and the tender point test (ouch), and where I went after and spending the rest of the day in a dumbfounded haze. What did this mean? What really is fibromyalgia?

These questions I’ve had to answer myself through experience, trial and error, and several unsuccessful treatment protocols. But I am muddling my way through it, like so many other fighters out there. And we are all in this together.

One of the things I’ve learned about fibromyalgia is how it can take one good moment and turn it into days of unrelenting pain. It can take one dedicated, hardworking person and turn them into a shadow of their former self. Everything you thought to be true completely flips upside down and you feel like you’re drowning, except nobody around you can tell. It’s absolutely isolating. But thankfully, I know I am no longer alone.

On this day, May 12th, we come together to celebrate our victories over fibromyalgia (however small they may seem to the typical person, we know they are monumental for us) and fight towards awareness, acceptance, research, and treatment. Our battle is not yet over, but united we will continue to push forward!

 

Not my photo! But So True!
Not my photo! But So True!
Not my photo! But heck yes! Fight until the end!
Not my photo! But heck yes! Fight until the end!

 

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I’ve Lost Track.

Good Morning!

I’m sorry I’m over a week late for this, but I have updated the Song of the Week page (finally!) and it’s a pretty good one, if I do say so myself!

These illnesses have taken so much from me, limiting me to the point where I feel like a prisoner in my apartment, bedroom, and body.

I have lost track of the things these illnesses have taken from me.
I’ve lost track of the number of times I’ve cursed these conditions, this body, and God.

I’ve lost track of the number of times I’ve said “I can’t do this anymore” and thought that I meant it.
I’ve lost track of the number of times I’ve wanted to quit my life, and thought I would.

I’ve lost track of the number of times I’ve prayed for the pain to end.
I’ve lost track of the number of times I’ve prayed for my life to end.

I’ve lost track of the number of days I’ve been unable to work a job I loved.
I’ve lost track of the number of friends I’ve lost because nobody wants to deal with this.

I’ve lost track of the number of tears I’ve cried and profanities I’ve spewed.
I’ve lost track of medications I’ve taken and the side effects I’ve endured.

I’ve lost track of the plan for the life I thought I would have.
I’ve gained an appreciation for the life I have now.

I’ve lost the need to plan, because I lost the life that could be planned.
I’ve gained friends along the way who have opened my eyes.

And I’m thankful for the journey.

Love,

Courtney

 

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A Letter to People who Don’t Think my Pain is Real

Good Afternoon!

As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!

Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,

This letter is for you.

I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.

I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.

I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing).  These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.

This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.

I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.

I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.

Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.

Love,

Courtney

Oh just another Monday. Last week.
Oh just another Monday. Last week.
Couldn't survive without these two.
Couldn’t survive without these two.

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Someday

Good Afternoon, Friends!

Today’s Song of the Week totally changed my attitude and mindset for the day! As I’ve mentioned before, Rob Thomas (the lead singer and writer for Matchbox 20) has a wife who lives with a lupus-like condition so he has written several songs about what it is like watching his loved one in pain. Her Diamonds is a beautifully amazing song that I posted a while back, but today’s song (Someday) is more relatable and inspiring for spoonies and non-spoonies alike! That being said, it’s time to live a life you love!

As a chronic illness warrior so many things are out of our control, including seemingly simple day-to-day tasks like bathing or even getting out of bed. We can resign ourselves to despair, because that’s the type of existence chronic illnesses expect of us, or we can fight back. Now, fighting back when you’re physically unable to get out of bed may seem ridiculous and like an outrageously tall order, but I don’t mean literally dukes-out fighting. Attitude is key here, folks.

Here is the first verse to Someday:
“You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry”

Now if that isn’t a spoonie anthem, I’m not quite sure what is. I feel like we so often are dragged through these days and they begin to blur into one another. Endless days of pain and medications, appointments and blood draws, sleep and insomnia until we have forgotten the day or month or even year. We carry on and on and on.

Here is the chorus:
“And maybe someday
We’ll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we’ll live our lives out loud
We’ll be better off somehow
Someday”

Now, we may never figure any of this out, but we can live our lives out loud. We can make our voices heard. We can support one another and learn from one another. We will likely never understand these illnesses or be able to look into what the future holds, but we can make it through one day at a time together.

Here is the bridge:
“Cause sometimes we don’t really notice
Just how good it can get
So maybe we should start all over
Start all over again”

We get so lost in these illnesses that we can miss the real beauty in the world. Try and watch a sunset or sunrise every now and then. Try and look up at the stars in the sky. Hug someone you love. The little pleasures in life really put things into perspective, I’ve found. Michael and I grew up in the county and we love going back to see the stars at night. It changes everything, even just for a moment.

So we can start over, today. We can choose to live out loud, a life we love. And we will definitely fumble and fall and fail, but what’s important is that we get back up and try again. And keep trying until our lives are ours to love and change. We control more than we think we do. Attitude is key.

We can’t control our illnesses, but we can control how we live with them. That’s much easier to do together.

Yours in battle,

Courtney

Rob_Thomas_Someday

 

 

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A Love Letter To My Illnesses

This may sound weird, shocking, even wrong. Who thanks an illness that, from the outside (and sometimes inside), appears to have ruined their life? I do.

These illnesses have changed my life but I don’t believe they’ve ruined it. And here’s why.

Dear Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, and Others,

I am writing this letter to thank you for how you’ve changed my life.

Before you I was a selfish person. I went through my life with a sort of self obsessed confidence. I was carefree and eagerly focused on my career and my shopping habits. Gossiping and drama were the center of my days while I should have been aware of the real world instead of my narcissistic universe. I would get enveloped in everything that did not actually matter.

When I began feeling pain everywhere I was angry. I know this sounds like a natural response to a body that is failing an otherwise healthy 25 year old woman, but I was filled with bitterness that was unbecoming of my prior bubbly self. I pushed through, because that’s what I did back then, not knowing that I was further wrecking my already damaged spine. My broken body fueled the drama that was my work (and home) life.

After my first spine surgery I began my Tumblr blog and found my place among the Spooniverse. I had no idea this was even a thing. I had no idea that there were so many illnesses and people like me, suffering with  bodies failing young women and men around the world. It shook my egocentric self to the very core. This was so much larger than myself! Through this I realized there were people in far worse shape than I was! There were warriors fighting courageous battles with smiling faces and I was moved by their spirits.

It gave me faith that I could do that, too. I could smile through my challenges and brighten people’s lives, and open their minds and hearts. I could look outside of my own problems and dedicate my life to helping others get through their days, weeks, and months. I could support and mentor new spoonies like I was (and still am!) supported and mentored by powerful, inspirational warriors!

It was around this time when I took stock of my life. I looked around and fell even more in love with my friends and family. They stood by me through my ups and downs, my good times and bad, my selfishness and my thoughtfulness. It was their love and support that propelled me to where I am now. It was their hours spent arranging pillows and filling pill cases and attending chronic pain workshops. And if it wasn’t for them I wouldn’t be the person I am today.

Throughout this whole experience I have been changed. I never knew how strong I was before you took over my body and made it your own. You have affected every aspect of my life and altered my reality and future. I no longer know what tomorrow will bring, let alone the next month or year, but I know I will get through it. You may be trying to break me, but you won’t. I am loved and supported and cared for by people who I never would have met if it weren’t for you. You thought you were ruining my life but you have enriched it in ways I never could have imagined.

So, dear illnesses. You have changed me. And for that, I am entirely grateful.

Thank you,

Courtney

Also, check out the Song of the Week page for an upbeat jam!

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Beginning and Letting Go

Good Afternoon!

As usual on Mondays (or Tuesdays, or whenever I get inspired!) please check out the Song of the Week page for a new addition to your feel good soundtrack!

Today, as I was emptying the dishwasher (because we have one now! Way too excited about that) and heading back to bed, I felt the horribleness of self-pity. I was trying to remember my last true “good day” and wondered when things would turn around for the better. I tried to remember every time I had that thought before. How many times do we plan for our next good day rather than make the best of what we have?

Here is where I begin. Here is where I change my way of thinking. Here is where I let go of the self pity, anger, frustration, and negativity. Here is where I alter my perception of my life and future.

This is not to say that I will never experience those feelings again. I’m only human after all. What I am working on is acknowledging those feelings and moving past them. Refusing to wallow in despair about my situation may be hard, damn near impossible some days, but I am a work in progress. Aren’t we all?

So this is my challenge. Today and every day. Make the most of the days I have, because some people aren’t so lucky. Smile every chance I get, not just for myself but for others. Love the family and friends I have, because they are the good in my life. And do what I can with what I have.

Even if I feel absolutely terrible, I want to feel the sun on my face every day. I want to experience my life as fully as I am able.

Our lives may not be what we had imagined, but they are the lives we were given. And we should fight to live them!

To new beginnings!

Love you all so much,

Courtney

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Smiling through the hospital visit. Yay for antibiotics and horrible UTI's.
Smiling through the hospital visit. Yay for antibiotics and horrible UTI’s.

 

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The Importance of Community

Good Morning!

As always, check out the Song of the Week for a great tune!

This past week I have been fortunate enough to be surrounded by friends and family. People that love me, care for me, and take care of me. Friends that let me (or tell me) to sit when I need to, rest if I’m tired, and eat with my medications.
Having these people in my life reminds me that nobody fights alone. We aren’t meant to. It’s biology. It’s evolution. It’s in our DNA. We need each other! “We are all just walking each other home– Ram Dass.”

Community can mean a couple of different things. It can mean a group of people who live in the same vicinity or people who share a common characteristic or trait. I am so lucky to have amazing communities in accordance with both definitions!
The people who live around me, that I’m in constant contact with, are incredibly supportive of my needs. They may not completely understand the challenges I live with, but are always ready to grab my walker/cane, pick up things I can’t, arrange my pillows in a comfortable way, and offer their hand to assist my balance. All of these seemingly little gestures are more helpful and moving than anyone could ever know.
My spoonie community, the people who share a common characteristic of chronic illnesses, is without a doubt the greatest blessing I never saw coming. I hadn’t heard the word spoonie until I began my Tumblr blog and now I don’t know how I ever made it so far without this tribe. I have learned so much about my illnesses and myself through the spooniverse and I could not be more grateful. Sharing tricks of the trade and support from those who understand has been immeasurably instrumental in where I am today.

Sometimes these communities overlap, like when I have friends and family members who are also battling chronic illnesses. Like my friend who was over this week who has suspected arthritis! Or my parents and grandparents who suffer with arthritis, ankylosing spondylitis, degenerative disc disease, and others.
Look around you right now (assuming you’re not alone), and you will find people who are fighting battles you don’t know about. Talk to them, get to know them, they are your community. Your tribe. And even if you don’t live with them, you might have common characteristics or traits to bond over. Nobody can walk this road alone. It’s much more fun to have someone to chat with along the way.

Who is in your community?

I’ll be in yours if you’ll be in mine! :)

chronicallycourtney@gmail.com

Love,

Courtney

IMG_20160312_115011-COLLAGE IMG_20160316_174122-COLLAGE

 

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The Bright-ish Side

Good Evening, Friend People!

As usual on Mondays (or sometimes Tuesdays, and rarely Wednesdays), please check out the Song of the Week page for some uplifting and feel good tunes! You get a special two-for-one deal today!

I titled today’s post “The Bright-ish Side” because sometimes the other side, or what some people refer to as The Bright Side, is not always all that bright. Sometimes it’s a touch bright-er but that sounds a tad too optimistic and a little misleading. Often what I have found is that the side is more of a shade of bright-ish than bright. But nevertheless, it is the better option.

Today started rather happily for me and then quickly went from happy to not-so-happy. When I am feeling not-so-happy (or like today, various shades of angry/frustrated/sad) I try extra hard to find the bright-ish side. So, here it goes:

I cleaned the apartment, took my pup for a walk, chatted with a friend and had a wonderful few hours of relatively pain free (as pain free as chronic pain warriors get) enjoyment. When the pain decided to return full force I became frustrated. It is so maddening, having to pay for a few hours of happiness with unrelenting pain. I compared this situation to an overprotective father waiting up for his daughter who is past curfew. “What did you think you were doing going out and enjoying your life! You know better than to be happy! Enjoy being grounded for a week!”
On the bright-ish side, I got to leave the house and enjoy the sun on my face. Those hours of joy cannot be taken away, even if the pain tries to do just that. I have photographic proof that I enjoyed (at least parts of) today.

My husband sat down to do our taxes and realized a couple of things related to my disability and work forms are not accessible online so I will need to phone for them. I began panicking and my anxiety became overwhelming. I can not think of two phone calls I would like to make less.
On the bright-ish side, I have a husband to help with the taxes and friends to talk me down when I can feel a panic attack coming on.
There are times I am sure that I can not survive one more day in this much pain.
On the bright-ish side, I know tomorrow is coming and there is a chance it could be better than today.

Sometimes I feel utterly empty and like I am as useless as they come.
On the bright-ish side, I have about a hundred people who will tell me that is not true.

There are times I am scared that nothing will make sense ever again.
On the bright-ish side, does anything ever really make sense? 😉

On the absolute bright side, I have amazing supports in all of you. I am more grateful to you than I can express. You are the bright side.

And if you ever need help finding the bright-ish side, I’m your girl. Practice makes perfect.

Love,

Courtney

Enjoying the sunlight

Enjoying the sunlight.

 

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