Yesterday I shared a very personal blog that I felt could relate to a lot of people going through similar times.
Not even necessarily sick people, just people who have had fading relationships for multiple reasons after changes in their lives.
It seems it was really relatable because The Mighty approached me to publish my article!
If you missed it, here is the link !
Please take the time to read and share, maybe it can help someone more than you know.
Pheo VS Fabulous 💖
Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. There’s nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until there’s no more communication. Everyone just went away...
You can’t help but blame yourself,
if I wasn’t this sick, I’d still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldn’t push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new “sick” me.
If only I wasn’t intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that I’m the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole I’d understand, but I’m the very same person.
This is the first time I’ve ever expressed how much it hurts.
How at my sickest I’ve never been so alone.
When someone says, “you must have a lot of people around you!” And you just don’t know how to respond.
How I don’t want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But I’ll never be normal.
So it shall remain…
What I will say is I’ve learned a few things while these relationships have come and gone.
Pheo VS Fabulous 💖
Facebook: @pheovsfabulous
Instagram: @pheovsfabulous
If ever there were a time to watch the news, tonight is the night. I will be on CTV news tonight at 6 with Emily Campbell discussing one of my most difficult events that happened to us so far.
It’s been a hard day, please support and tune in to see another part of what we as the terminally ill go through.
Once it’s aired , as it’s net cancer November… SHARE! Please share the story everywhere possible!!!
It will be my first time seeing it at 6 too, so I’ll be with all of you, hopefully you’ll be with me too ❤️🙏🏼
It’s CTV Montreal EST, I’ll also share the story here afterwards online, or watch it on https://montreal.ctvnews.ca/mobile/video?clipId=434385
If you asked me two months ago where I was going to be today, my answer would be very different than right now.
I’m a positive person, but when you can’t walk or talk … there’s a point where positivity and realism needs to be used with caution. Which is why we dream, and dream, and dream some more. Which is what I did.
They say a dream is a wish your heart makes, well my heart did a lot of wishing for me…. but it came true ❤️
When I was admitted into the hospital unable to speak or walk, with so much pain, little to no mental function, and almost none of myself left…. if you asked me where I’d be in two months, I wouldn’t have guessed how I got my wish, and how I’m able to write about it with all of the people I care about so much.
….But here I am, doing just that.
Isn’t it beautiful?
Not giving up?
Hope
What is it I always go on about?
I’ll never let this disease take my ‘Fabulous’, well it took a lot of pieces of me this time, but I still hung onto my fab so tight… the year leading up to this was hard. The hardest year so far, but I can honestly say that we didn’t once let that stop us from smiling, no matter how awful it got. That’s what got us through.
I can also say that I smiled through just about everything.
You have to.
Because for better or worse this disease isn’t going anywhere, so you have to make a decision. Live with it, or fight against it. Eventually people can lose a fight, but I can keep finding ways of living with cancer. Makes sense huh?
I think I’ve figured out this nasty little turd, shhhhhh!
I truly wanted to update everyone and tell you that for right now I’m feeling much better all things considered, I’m not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I haven’t done anything ‘crazy’ like that in a long time! 😂
The reason why I wanted to share this is because we’re far too hard on ourselves and we don’t celebrate the small stuff. I’ve come such a long way and I don’t ever recognize some major milestones even though they may seem like small ones. It’s about time we realize things like this may not come around again. So celebrate EVERYTHING!
And don’t forget that beautiful smile 😀!
I just wanted to share a bit of good news, I’m feeling MUCH better. I don’t know where I’ll be in the coming months, but as for right now…. I’ll take it. I have a long road ahead of me, but as long as I keep smiling, I’m sure my fabulous can get through anything.
Pheo VS FABULOUS
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.
When you hear hoofbeats, we are trained to think horses, not zebras … 🦓
This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.
NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄
As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…
Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.
I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩
With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.
Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting.
I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?
It’s the unfortunate truth.
This is your life. It’s yours to save.
We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it.
We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.
Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.
We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust
🌎✨🌈
Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…
My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷
My heart is so full of gratitude, and I wanted to take this opportunity to share that.
Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂
Pheo VS Fabulous
XOX
I will try & update as much as I can, (on my good days) 😘
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Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥
It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of revelations.
Such as, did I just type a sentence?
Or spell revelation without going into one of my “coma like states”?
Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice 😐 ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️
Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …
I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my “Fabulous”
….Then, what good is it if there’s no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didn’t know how or where to even begin.
Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?
You’re telling me.
I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn 🥵 , you start to question WTF IS HAPPENING TO ME!
This isn’t Just MY disease anymore.
This can’t be happening.
This can’t be happening.
This can’t be happening.
This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.
But before I get into any of that..
I just want to share one very important thing, without support we are nothing, and over the years I’ve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.
It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isn’t me.
I would never distance myself like this by choice.
So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.
Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but it’s the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.
Hope is something no one can take away from you. Not even cancer.
This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that don’t belong, but it can’t change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.
That’s the thing when you come after a fighter, eventually they WILL find a way to fight back.
Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.
I’ve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.
Yes, you heard me. A diagnosis. What? Don’t you already have 17 diseases some may ask?
*insert laughter attempt here*
I thought I had enough as well.
WELL Apparently not.
This is what I’ve been getting at.
Some may be thinking, how come no one helped sooner?
WELCOME TO THE DANGERS OF BEING RARE
I have never been sent home so many times to die in my life.
That part was a little depressing.
One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ➡️ …..
…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If you’re going through something similar, whether you’re in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.
Through my suffering I’ve been able to reach out into so many people’s hearts and lives:
Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.
Through the tears I’ve laughed harder than I’ve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.
I love all of you more than I could ever describe my beautiful zebra unicorns 🦄✨
Read my other pages for more information or visit my Facebook to say hi & sometimes quick updates 💋
📸 @pheovsfabulous
THE Unicorn 🦄
