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.

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

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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.

 

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

Finding the Bright and Shiny in the Dark and Twisty

Good Morning Friends!

I’ve already had a pretty terrible morning beginning with a migraine, that-time-of-the-month cramps, and continued by a call from my surgeon saying that there is scar tissue in my spine so I will need injections to hopefully settle it.

This has me feeling pretty dark and twisty (any Grey’s Anatomy fans?) today instead of my usual bright and shiny self! What has recently helped, however, was a suggestion from one of my Instagram friends telling me about this song called “Try Again” by Dilba. This is an artist I’ve never heard of but apparently it was a hit in Sweden and cowritten by my Spoonie Friend! Now this song is pretty uptempo and techno-vibey but the lyrics are spot on!

I hope it brightens your day, too!

It really made me dig into myself and pull me out of my “woe is me” head space.

Something that has been weighing on me lately is the notion that you can be both “dark and twisty” AND “bright and shiny.” You totally can, and I recommend it. I myself lean towards being “Bright and Twisty.” It’s healthy to be able to look at yourself and take the good with the bad (even when the bad seriously seems to outweigh the good), and be able to recognize and accept both.

Back to my Grey’s Anatomy metaphor, Meredith was never successful in being bright and shiny, was she? No. And do you know why? Because bad stuff happens.

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Meredith knew that you didn’t have to be happy all of the time to still be a well-adjusted human. You take the good with the bad and make the most of it when you can. Even if you have to fake the happy sometimes, you are still able to find joy where it is and love with your whole (dark and twisty) heart.

So how do we find the Bright and Shiny when the world is cloudy? How do we navigate the dark waters that even a Netflix binge can’t even rescue you from? I think it depends on the person.

But I will give you a (somewhat dorky, but hopefully helpful) lesson from my Pain Group last week.

This is called Thought Recording (stay with me here..)

We all have these Automatic Thoughts that are sometimes horrible and hard to shake. They seem to come on randomly at first and then can build and build over time. They can build a wall so high that you truly believe them so you cling to these thoughts so hard that it makes it almost impossible for good people or good thoughts to break through.

Let’s give an example:
Situation: I went out with a friend for lunch and had increased back pain for two days afterwards.
Moods: Angry (100%), Depressed (100%) Hopeless (90%)
Thoughts: This is hopeless; I’m never going to get better. I won’t be able to do things I enjoy in the future. My future is going to be crappy. My friends won’t bother inviting me everywhere…. etc.
Hottest Thought: I shouldn’t bother trying.

Now think for a moment… what evidence is there to support that hot thought? That the pain got worse when you did something. But what evidence is there against that thought? It was important to try something so you can learn what works and what doesn’t. The chairs were hard and uncomfortable so maybe bring a cushion next time. If you don’t try something you will miss out on things that make you happy or could help in the future. You are learning new ways to manage pain… etc.

There is so much more evidence against the thought than there is for the thought.
I know these thoughts come and they’re so believable and you don’t feel like doing this homework, but if you never take a close look at these thoughts you will not see the mountains of evidence against the hazardous ways you’re thinking.

Never forget you’re loved and supported. I promise you have at least one person on your side; me.

And you help my bright and shiny come out…. even when I’m feeling super dark and twisty.

If you have no idea what the Grey’s Anatomy references are about, I totally suggest watching it on Netflix! I could probably recite every episode. Yes, I have a problem.

Love and Spoons,

Courtney (aka Meredith).

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Starting Out Spoonie?

Tips and Tricks of the Trade From One Spoonie to Another

Good Morning(ish) to you!
As always, give the Song of the Week a look at for some spirit lifting or good time tunes.

Before I knew what the term “spoonie” meant or the significance of spoon reservation, I was a free wheelin’ fun lovin’ University student. I worked full time while studying course overload semesters and enjoyed many a fun night out with my  girlfriends. Life was my oyster, so to speak.

It all came to a halt when chronic illnesses began to take over my body. I was no longer in control and the career and future I had planned on was not possible anymore. I felt lost. I felt utterly alone and scared. I began having panic attacks for the first time at 18 and had been free of them for years until the horrifying loss of bodily control saw them raging back, more powerful than ever. After what felt like decades of suffering, thinking I was the only one in the whole world who drew the short stick in life, I began a Tumblr blog to share my thoughts with whomever would listen. Not knowing what to do with Tumblr at the time, I eagerly searched for other blogs to follow and typed in “chronic pain”. This is where I first saw the word spoonie. Immediately I recalled hearing Christine Miserandio’s The Spoon Theory years ago and before I knew it I was YouTubing it again with new, desperate eyes/ears. Tears began streaming down my face as I connected with the words that I had struggled to find for so long.

Whether or not you relate to The Spoon Theory (some people simply do not like the comparison and have found other thoughts or theories they connect with more which is absolutely wonderful!) we tend to use the #spoonie name to find one another among the different Social Media channels. After my tangle with Tumblr (where I still occasionally blog/post/creep) I became quite obsessed with Instagram, and from there I began this website! I flirt with Twitter a bit and am working on connecting with every spoonie I can find! Spoonies stick together!

So You’re a Spoonie. Now What?

Once I found this community, the whole world changed. I found people who got what I was going through! I wasn’t alone in my “poor me, my life is awful” world anymore! I met people around the world who had a variety of illnesses and who were kicking major butt! My spoonie friends are strong as hell and more supportive than I can even say.

Six Steps to Spoonie Success

Step #1 when you begin to relate as a spoonie, find your people, find your tribe! Having this support is vital. They will help you in more ways than you can imagine. They will share their own tips and tricks and encourage you on your medical, spiritual, and emotional journey!

Step #2 is to become an advocate for yourself! I am in the process now of fighting for more referrals and getting appointment dates for doctors. It is stressful and exhausting; the life of a spoonie is not a particularly fun one as there is always stress on top of stress, but know you’re not alone! Doctors don’t always know what to do with us. It is tricky and sometimes takes years to get diagnosed with any type of illness (unfortunately), but stay on top of the doctors and fight for yourself and your health!

Step #3 is to understand that not everyone will understand your illness/es and that has to be okay. Sometimes family/friends/doctors don’t want to accept what is really happening. Some physicians don’t believe in several diagnoses (even with the mountains of evidence to the contrary). At times it can feel like you’re hitting your head against a wall trying to explain what is going on in your body, but you can choose to walk away if it gets too much. Let go of the toxic relationships and focus on the ones that support you and encourage growth. You have enough on your plate, you shouldn’t have to prove how sick you are to anyone.

Step #4 may sound silly but, find a hobby. Truly. These illnesses may keep you house bound and addicted to Netflix, but you need to find joy where you can. Write, colour, scrapbook, read, do puzzles, whatever your heart desires. I tried my hand at crochet but was unsuccessful. I did Tai Chi and was not the best student. I really enjoyed my venture into sewing and would love to get back to that! Give whatever you can a go! These illnesses take up so much of your energy and mind that we need some way to express ourselves being wrapped up in the weight of our pain/exhaustion.

Step #5 Make your life as easy as possible. Change what is not good for you. I realize you don’t want to be seen with a cane, but if it does more harm than good to go without it, bedazzle a walking stick and get over it. If the stairs are making you cry in agony, make the house as accessible as you can and if that means you need to move, so be it. I’m in the process of moving to a one floor apartment now. It’s heartbreaking but necessary for my health. If you can’t bend or lift, put whatever you need within reach. These things may sound sad and just a touch pathetic, but we’re all in this together and our lives are hard enough, let’s not make it any harder for ourselves. Also, take bubble baths. Do it.

Step #6 Find some local support as well! I’ve found a Fibromyalgia Support Group in my city and attend a Pain Management Group on Thursdays. I’m also a committee member for the London chapter of The Arthritis Society. It’s great to know what is available for you in your own city/town and what supports you can access.

I hope this helps in some way! I know how intimidating and terrifying this is. It’s a whole new world but you’re not in this alone…. I can show you the world…. hahaha

Love and Spoons!

Courtney

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Spoonie Stuck in Stress

Good Afternoon Lovelies!

First, as usual, check out my Song of the Week page for some mood music to go along with today’s post.

Stress is not a friend to spoonies, which is almost comical (if it wasn’t so darn painful)because our lives are full of stressors, from doctors appointments to dealing with insurance companies. There are rarely stress-free days for people who are chronically ill.

On any given day our pain begins at a 6-8 and more than likely will escalate before anything else. If we’re staying home we are plagued by housework we may not be feeling well enough to do, trying to book appointments, possibly dealing with insurance or social aid for disability benefits, prepping for hospital stays, or trying to convey the weight of your illnesses to any number of individuals who may question the severity or reality of your pain.

All of these things make for a very unpleasant atmosphere for people who are already dealing with extenuating circumstances. I have yet to meet even ONE chronically ill person who wants to live like this. We are not beggars, fakers, or attention seekers. We are people who want to live a normal, healthy, happy life and we do not need to be questioned, antagonized or have to prove the gravity of our illnesses.

But this is a part of our lives. I’ve heard from friends that have been cruelly approached about using their parking permits or mobility aids, and I’ve heard horror stories from people who have cried themselves to sleep because friends and family do not seem to understand what they are going through.

It is an impossible feat, living this way. But we do it because it have to. Judgement and skepticism come along, part and parcel with being chronically ill. But aren’t we in enough pain? Aren’t our lives painful enough? I think they are.

So here we are. What do we do for stress? Colour. Nap. Watch Netflix. Practice Deep Breathing. And always remember that you’re not alone. You have your own built in support system with me here. I can rant, complain, and cry with the best of them.

Keep your cool, kids. We’re in this together.

xx

Courtney

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