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

 

 

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

 

Chronically Vlogging!

Oh hello there, friends!

I know it has been a while and I appreciate your patience!

As you know, the life of a chronically ill person is unpredictable and often inconvenient. Plans made around us are in faint pencil and subject to change at any second.

In exciting news, however, I have begun my journey into vlogging!

It has been a terrifying ordeal but the support I have received has been amazing and overwhelming, so thank those of you who have checked them out.

For those of you who have not and this is brand new information, here are my videos!
Please feel free to comment, like, subscribe, and/or share!

I will be adding a brand new video to this lineup today (hopefully, if the stars align! haha) so stay tuned for that!

Thank you again for your ongoing support!

Love,

Courtney

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.

How to Have a Relationship in Chronic Pain

Good Afternoon, Warriors!

As usual with a new post, here is the new Song of the Week to empower you and give you strength!

I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!

  1. Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
  2. Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
  3. Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
  4. Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and Arthritis Sex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
  5. Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
  6.  Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
  7. Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!

    I hope this was even a little bit helpful! If you have any questions please email me at chronicallycourtney@gmail.com.

    Love,
    Courtney

    *Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*

 

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

IMG_20160319_092355

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

 

Box of Dreams

Good Morning, Lovelies!

As you know, I’ve just moved into an apartment for mobility reasons. While putting things away in their new, proper homes I’ve come across things that were just heartbreaking to see again.

No, I’m not talking about old photographs or home movies.. I’m talking about my Teaching Portfolio, Flute, Kids Books, and more.

These things from a life I thought I was going to have but is no longer in view. These artifacts are now in Courtney’s Box of Dreams… hidden far beneath bins in the back of my (walk-in!) closet.

When I was in grade school my best friend was in the school’s band so I decided to try out for it and really began loving the flute. I loved it so much my mom bought me my own flute! Things were going well with the flute until cancer kicked my butt and I was no longer able to play. I could never get enough breath to practice while on chemotherapy and when I rejoined my classmates for year 2 of high school the band teacher was not interested in helping me catch up to where I needed to be. I was so disappointed and now the flute is buried in my box of dreams.

Along with my flute is something even more painful to look at… my teaching supplies. I have huge Rubbermaid bins absolutely full of teaching supplies. These include crayons, text books, curriculum books, pocket charts, bulletin boards, binders of lesson plans, stickers and so much more. I ended up giving a lot to my sister who is an Educational Assistant, but it breaks my heart beyond words. This was a career I worked so hard to achieve and now my thousands of dollars worth of supplies are of little use to me in this condition.

All of my Educational Assistant supplies are buried in drawers. I’m not sure why I hold on to them when I am painfully aware that I will never be able to do that job successfully again. My back just won’t allow for it; but I can’t give them up. Working with kids with special needs is my passion, beyond anything else.

So what do I do now? Wallow in my broken dreams? That doesn’t sound like me.

Instead, I am creating a new passion. A new dream. Courtney’s Desk of Dreams, if you will.

In our new home I am getting my very own desk and on that desk I will write. I will colour. And I will do something I haven’t mentioned before now.. I will Vlog!

Once my precious desk is set up exactly to my specifications I will begin Vlogging! This is something I’ve never done before and I am extremely nervous about the situation but also thrilled and excited! I’ve never so much as posted a video on YouTube before so this is bound to be an interesting experience for us all!

It’s not about wallowing in what could have been. It’s about making the choice to find a new passion and a new dream. And you are all part of mine!

Thank you for being my purpose! Thank you for caring enough to read my words and connect with my feelings!

Thank you for always being there for me and helping me see what I can do instead of focusing on what I am no longer capable of.

And if you ever need anything, please let me be there for you too!

Love,

Courtney

 

 

***** This cover art is done by The Psych Scrivener*****

You’re Not a Bug.

Good Afternoon, Friends!

I know it’s been a while.. but some things never change. Check out today’s Song of the Week post to hear an old favourite of mine.

So, I’m all moved into the new apartment! It’s amazing. I feel so lucky to be here and to have had the help that we did; we really could not have done this on our own. In under a week the apartment is put together and looking like a home. Thankfully the pets transitioned well- far better than I expected! Lola is adjusted to not having a backyard anymore but now she gets 4 walks a day to make up for it, so I think she’s quite enjoying this new arrangement. And I am, also! I have more energy now than I could have ever expected. It could be adrenaline propelling me forward, but I’m grateful for it, whatever the case.

The title of today’s post seems a little weird, I know, but I was watching something a couple of weeks ago and jotted down “you’re not a bug to be squashed. You’re a warrior.” I’m not sure what I was watching and when I Google these words nothing familiar comes up. I could have been hallucinating the whole thing, but I am as inspired now as I was when I first heard (imagined?) it.

Our lives as spoonies can be just one appointment after another, one symptom after another, one doctor after another, one medication after another, until it is all consuming and your identity is lost. There is no shame in this. It is what it is. But what can happen is that you begin identifying as a patient, as an illness, as a collection of symptoms. You can begin identifying as something far less than you are. When you look in the mirror and see uncombed hair, unbrushed teeth, blotchy skin from a tear-stained pillow, you begin to see yourself as small. As a bug. As something that needs taking care of.

You are not these things. You just aren’t. You are a person. And more than that, you are a warrior.

You are not a bug to be squashed. You are not a problem that needs to be taken care of. You are not something that is to be ignored or removed. You are not an inconvenience. You are not just a patient or an illness. You are a force to be reckoned with. And if nobody ever told you this, I am telling you this now.

It is one thing to hear it/read it/say it, and another to truly believe it. So how do you put these words into practice?

I enjoy mantras or affirmations. Stick some Post-It notes on your mirror that say “I am Fierce, I am more than my illnesses, I am Powerful” or whatever it is you believe will be most effective for you. Whatever you need to hear every day until you believe it.

Ask some friends or family members what they think your biggest strengths are. It’s always nice to hear from other people’s points of view, especially if you’re having a particularly difficult time thinking of your strong points right this minute. I struggle with this myself sometimes. Write them down and look at them whenever you need to be reminded of the power within yourself.

Start writing. Even if you never show anybody. Even if you think you suck at it. Even if you don’t think you have anything to say. Even if you think nobody will care. Just sit down with a pen and paper (or your laptop) and just begin. You don’t have to start at the beginning. Start where you are in this moment. You can’t change anything about the beginning, but if you start now you can certainly change the ending.

Make your own rock star playlist. You can take from my Song of the Week section if you’ve been enjoying the tunes I’ve been selecting, or you can start fresh with all your picks. If you have a song that you think it amazing and really speaks to you, please feel free to share it with me! I’d love to use it one week and will totally give you credit! 🙂 We’re all looking to be inspired!

And, as always, message someone who has your back when you’re feeling like a bug again. I’m here for you if you want to chat. I know how strong you all are and would love to give you a pep talk if you’re in need.

Go out into the world and remember your strength.

Love,

Courtney

Breaking Up with my Make Up

I feel like I’ve been in a little writing rut as of late. So many things have been happening and I didn’t know if I should share them, or even how to go about stating the mile-a-minute thoughts in an eloquent way.
Nevertheless, I have things to say so I’m going to go ahead and just say them.

Firstly, check out the Song of the Week section for a pick-me-up chosen by my husband! If you like it, go ahead and comment or send me an email at chronicallycourtney@gmail.com!

In effort to speed through the changes that have been happening lately, I will bullet point what I can!

  • I got kicked off of my Long Term Disability Benefits but am fighting it! I have heard from a bunch of other Spoonie folks who unfortunately have been in this situation and I thank you for your words of support!
  • We are MOVING! And by moving, I mean we get the keys tomorrow! We are moving from this three floor townhouse into a beautiful apartment building where we are on the FIRST floor with easy access to the doors, laundry, and lounge room. There is also an indoor saltwater pool on the premises! So excited! But as you fellow spoonies know, this is an exhausting and extremely taxing process on our bodies. All for the best, though!
  • My toe surgery is over but now I feel like there has been a complication. I revisit the surgeon next week so I’ll keep you posted on that.

Now on to the real post….

We have been packing for a while now, clearing out the house of all the things we no longer need or will have room for in the new place, and it’s been a process to say the least. It’s always hard to pack when you’re still living in the place you’re packing! Some things are easy, like I could pack two out of my three drawers of panties (I know, it’s out of hand), but some things were harder to box up. The hardest being my gigantic makeup bag.

If you’ve been following my journey for a while I’m sure you’re no stranger to my relentless selfie taking and posting. As obnoxious as it may seem to my family (I’m looking at you, Michael), it is how I/we chronicle our days/hospital visits/weird reactions or symptoms/new makeup techniques/let the world see how gorgeous we are.  My husband can point to the exact selfie spot before and after I bought my contour kit.

These illnesses take so much from us; more than anyone could ever understand who isn’t in this position themselves. Dying my hair, piercing my ears/nose, getting new tattoos, buying cute leggings/pajamas, and doing our makeup all fancy is how we control our bodies when all other control has been taken away. I can not control when my stomach decides it didn’t like what I ate. I can not control the weight gain from meds when my back makes exercise near impossible. I can’t control when the misophonia will hate a particular sound. I can’t control what textures are tolerable. I can’t control what part of my body will hurt when or how to make it stop. Our lives seem to have been ripped apart before we even knew what was happening.

It makes sense that I’d hide behind these things. And I do. I completely admit it. Before my body got torn apart I was tattoo free with limited piercings and natural blonde hair. I currently am sporting 7 tattoos (2 more happening next month!), 11 piercings and purple hair. I also have more makeup than one person could think necessary. I hide my up-and-coming double chin with clever contour tricks and hide the pain behind killer smokey eyes. It’s the mask I show to the world. But it’s packed in a box now. Purposefully.

I feel the hairs on the back of my neck stand straight up as I think about leaving the house tomorrow with my makeup packed in a box I can’t identify. I feel the anxiety mounting higher and millions of butterflies in my stomach (not the lovey ones). I feel panicked. But I will brave the world tomorrow, fresh faced and ready. Not hiding, but open and prepared to show my true self as I go from one appointment straight to pick up the keys from our new place!

Who knows, this may just be the best thing for me. A little break up from my makeup. Even if it is anxiety inducing, it is good to let my skin breathe every once in a while, right? But don’t fret, my pets, I am in no way breaking up with my makeup for anywhere close to good. As soon as that box is unpacked  I’ll be back to my selfie taking self in no time!

Do you have any things like this? What is your mask?

Love,

Courtney

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New rook piercing in my ear and full on smokey eye

 

Makeup free
Makeup free

 

 

It’s Just Pain

Good Afternoon, Friends!
Please check out the Song of the Week for an updated weekly anthem!

It’s just pain, I whisper to myself again and again.

It’s just pain, I lie to myself over and over.

It’s just pain, I say as tears fall down and down.

It’s just pain, but who am I trying to convince?

If it were just pain, that might make a difference.

If it were just pain, it would be easier to explain.

If it were just pain, I could accept this burden.

If it were just pain, there could be an end in sight.

It’s just pain, but my voice is shaking.

It’s just pain, but my heart is breaking.

It’s just pain, but I know it’s not true.

It’s not just pain. It’s just me and not you.

 

It’s just pain, but it’s really not.

It’s a full on, every day, complete assault on our bodies.

And if it were just pain, it might be easier to digest. It might be easier to explain and comprehend. But it’s so much more than that, and that makes it harder for others to grasp. People have a hard time wrapping their heads around these types of illnesses because it is basically being tortured by your own body or immune system. Our bodies are killing us, pleading for us to give up whatever information they need but we don’t have it! We’re on our own here, it feels like. But we’re not. We’re joined together in this Spoonie War Zone, where it’s us against our bodies, ableists, and unkind doctors. It’s us vs them, and we’re experienced warriors. I’m so glad to be fighting this with you guys.

You’re all my Valentines.

Love,

Courtney