Zebra or Unicorn 🦄

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 🦄 😂

https://youtu.be/AHerMoNa9AY

Pheo VS Fabulous

XOX

I will try & update as much as I can, (on my good days) 😘

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I am rare – Rare Disease Day

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

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I turned twenty five

A day to celebrate magic

A night to let go of all fear

Your birthday has come, and you’re still here 

You’re so full of love, your sparkle is bright, how can we forever encapture this night?

With every obstacle faced, we now can revel in the win of this fight

Never over, never far, but not out of reach… when your Fabulous is on guard 

I turned twenty five, and it was just as sweet as I imagined it would be. Getting older is an indescribable gift, it is recognition for all of the hard work that goes into treating me.

My birthday gifts were filled with adorable home decor items, unbelievably soft robes, the pinkest of pink pillows to help me travel to and from my appointments, sexy ‘houndstooth’ gloves to keep my little hands warm and fashionable, Ralph Lauren towels to wrap myself in after a nice hot bath, an apple TV so I can watch all my favorite shows from the comfort of my bed, you see the trend? Fabulous pink, purple, and soft comforting items.. anything that brings warm and comfort to my life.

The gift that I was most grateful for? The unusual amount of energy, stamina, and excitement I could carry through all evening.. to enjoy this beyond amazing evening my family prepared for me.

Being around more than a couple people at a time when you’re ill is extremely difficult, but my family knows how to keep things comfortable, even my seven year old nephew became the ‘miranda police’ and would deliver citations when people were speaking too loud, or too close to me, it was the most adorable thing I have ever seen.

My mother made my favorite feast, homemade chinese food, which my bestfriend and I ate twice (no judgement on your birthday) and that’s what a birthday should be. Eating too much, laughing uncontrollably, making memories with family that I will hold so dear in my heart forever.

Happy Birthday, to everyone who is living moment to moment, keep sharing your fabulous, I know I will!

My Memories – 25!

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My 'lucky elephant' from my 7 year old nephew, he is a heart breaker

My ‘lucky elephant’ from my 7 year old nephew, he is a heart breaker

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Half of the fam who braved the cold

Half of the fam who braved the cold

I can't take a picture with my sister without making her laugh uncontrollably, and I wouldn't have it any other way

I can’t take a picture with my sister without making her laugh uncontrollably, and I wouldn’t have it any other way

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FEAST! Mother's homemade chinese food <3

FEAST! Mother’s homemade chinese food ❤

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Squad goals

Squad goals

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My bestfriend, and my dad, we always need one picture that isn't 'pretty'

My bestfriend, and my dad, we always need one picture that isn’t ‘pretty’

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The cake that exceeded perfection... <3

The cake that exceeded perfection… ❤

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My bestfriend

My best friend in the whole world

My strength

My strength, my love, my fabulous! ❤

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Remember, there is something good in EVERY day. You just need to open your heart and find what that good is, and share it with the world!

“Fabulous is your light, your smile, your energy, your posivitity, your willfulmess, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it!” – Pheo VS Fabulous