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
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