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 💖
I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”
It took me a long time to push past this, and focus on what’s important. Living
We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.
I’ll never forget anymore, what I’m fighting for.
I beat the odds, I am a miracle.
It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.
I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.
Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.
I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.
Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.
I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.
But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.
We have to take these small victories and celebrate them!
I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.
I’m here to tell you that I’m still fabulous, despite the odds.
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 🦄
Either way
…There’s so many quotes out there
Well, I say Create your own Fabulous.
Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.
Cancer is still going to be there despite the way I look, but it makes me FEEL a heck of a lot better when I don’t look like I have cancer 💋
“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous
Are you guys following my new FACEBOOK and INSTAGRAM?! 🙏🏼💖✨💄➡️👤 FB: Link ➡️📸 Insta: Link @mirandasimard
Although I would like to think that I use every day as an opportunity to make this disease a little more exposed, february 29th 2016 is rare disease day.
A day to remind the world that although rare… diseases like mine do in fact exist, and because they are rare, they don’t get any attention, and as a result – we suffer.
We suffer through misdiagnosis, delayed diagnosis, and lack of information when dealing with our rare conditions. We suffer through painful surgeries, lack of treatment options, and invasive trials, with no cure in the end. We suffer in silence.
February 29th is our day to make our voices heard, help me get a little bit louder.
I have pheochromocytoma cancer, adrenal insufficiency, I’m 25 years old, and I am rare.
Rare disease day, 2016
#mirandastrong #pheochromocytoma #netcancer #ai #zebra #rarediseaseday #pheovsfabulous
Since I was diagnosed with metastatic pheochromocytoma a little over a year ago, there have been very few times I’ve felt out of control. Despite the grim future, the poor prognosis, the “palliative” care options, the complicated nature of the disease, I have kept myself distracted by always having a plan. I felt that if I kept ahead of everything, and stayed engrossed in the process, I wouldn’t feel victimized by the illness. I also wouldn’t be able to stop and slow down and really “feel” much of anything. I chose the path of resistance, I thought that by doing this, I would somehow be able to fight this disease.
We don’t ‘fight’ cancer, we live with cancer.
We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment, we fight for the ability to wake up and maintain the impossible level of positivity we possessed when we started.
We fight for the ability to not scream when someone asks us if we are okay, how we are doing, and not break down in that moment because we are unsure whether to answer the way we think we should or just answer honestly.
We fight for the patience to explain ourselves over and over and over again to people when they ask what we have, because our disease is so complex, and so rare, one cannot begin to comprehend we cannot simply answer by saying _______ cancer… because it’s far too complicated, and it deserves awareness, we deserve awareness.
We fight for the strength to continue to cope with everything we are facing so that we can muster up the strength to continue to ‘live with’ whatever you want to call this, cancer.
In the beginning of my diagnosis, I still felt closer to my regular self. I could fake it a little more, it was easier to play the part of ‘normal’, and I could even take part in my own denial. There is always a multi level plan when it comes to cancer, mine went something like this: first we do surgery to remove as much cancer and infected organs possible, then we will do MIBG radioactive therapy to try and kill some of the cancer we cannot remove during surgery, and then later down the line when that is no longer an option and there’s nothing left that we can do, we essentially do chemotherapy and then typically people die. Now mind you every case is individual, that’s why the textbook 1-5 year prognosis is debatable. Some people can live longer, depending on their condition.
See, for the last year and a little while… I’ve had something to say “okay, this is next”, except now that the ‘multi level plan’ is dwindling away, I am feeling a bit like… okay, “what now?”
The fact of the matter is, there has to come a time when I have to start accepting the nature of my illness. I think that I have finally started to ‘feel’ the gravity of my situation vs trying to manage, plan, and control. Over a year has flew by, I’ve already had surgery, I’ve already done MIBG, and of course without these, I’d be dead by now, but that doesn’t mean I feel any better. In fact, my quality of life has gotten significantly worse. I feel very grateful that I am alive, but I still wish the life I have left could be spent living.
That’s the problem with cancer, every single step designed to treat you… will ultimately feel like it’s harming you in ten ways to help you in just one.
Living with death hanging over me constantly, while still trying to smile and stay positive is incredibly difficult. So far I have managed to do so by remaining in the moment, focusing on what’s happening right now. Although I will always hang on to my positivity, because it’s who I am, I would be lying if I didn’t tell you that this is becoming more and more difficult for me.
When you are given a time limit, you think… I’m going to do all of these amazing, incredible things. I will see the world, I will fulfill my wildest dreams, I will check off all of the things on my bucket list. Well what if you had a time limit, and you weren’t even able to do the simplest of things, how can I possibly fulfill my wildest dreams if I cannot even take a shower or climb a fight of stairs in my own home? I don’t want to ever utter those words, it’s not fair, but it’s not fair. You picture yourself being able to at least do what you wish with the time you have left, should you be in this situation, but often it’s so far from that movie-like fantasy. Forget my wildest dreams, at this point… I crave normal, I yearn for normalcy. I just wish for the remainder of my time to be spent with the ability to be normal, to carry out normal tasks, to be able to contribute and feel a sense of pride and accomplishment again.
I resent the fact that I am finally at the stage where I feel discomfort when someone speaks about something in the future, I feel a twinge of uncertainty suddenly. I just want to enjoy the time that I have, but I don’t know how to do that while I am so ill and in pain. I want relief, I have been enduring more and more pain in search of relief… only to find more pain.
All I can think about lately is a special Miranda friendly dream home tucked away in the woods, designed for peace and serenity… with NO STAIRS!, surrounded by nothing but the sound of nature, a porch with a nice cozy chair that I can sip hot tea and just sit and relax… that way if I continue to be able to do nothing, at least nothing could be stress free and fabulous…
Pheo VS Fabulous
