The Danger of being “Rare”

Most things designed to help you do just that, help.

………… But what if they didn’t?

What if the things meant to help you, were actually hurting you?

What if I told you the one thing that’s supposed to take away pain and suffering, is actually what’s causing it, making you worse.

Imagine going through life doing all of the right things to help yourself, but you still go backwards.

Let me start off by explaining what happens when you’re “rare”

…The danger of being rare is feeling unsafe.

…The danger of being rare is not being heard.

…The danger of being rare is you’re “too complicated” to help..

Passed off to someone else, one after another, or just simply sent back home.

…The danger of being rare is often receiving a misdiagnosis.

…The danger of being rare is trying to figure out what’s right and what’s wrong.

…The danger of being rare is having to be your own advocate.

The danger of being rare is losing hope.

The danger of being rare is losing your ability to speak, and no one knowing why.

The danger of being rare is losing your ability to walk, with no solution in sight.

The danger of being rare is being refused care.

The danger of being rare is suffering so much everyday you think you’re dying, and being right.

….But what if it wasn’t your disease killing you?

The danger is in the misunderstandings, misinformation, and misdiagnosis.

The danger of being rare is when it can be avoided!

Many of you who know my story are probably thinking I’m referring to just that. The beginning of my journey. Although the information applies directly to it, it isn’t what I’m referring to.

I swore I would never let this happen to me again.

some things are out of our control

We trust those who are taking care of us. That trust is essential, this is your LIFE!

But what happens when you can no longer trust what’s being done to help you?

I spent two months having my life saved in the hospital figuring that one out. ➡️ read here

Over the course of my journey with this disease, I was literally deteriorating. Each day became a new understanding of how this cancer would kill me, except I found out in the end it wasn’t just my cancer making me deteriorate. It was how I was being treated. In a year this got so bad that I eventually lost my ability to walk, talk, or do anything for myself.

… WHY??????

Although I don’t use the word normal very often, this was not NORMAL.

Being palliative is a very delicate thing, because the understanding of what palliative is … is sometimes misunderstood.

Being treated palliatively, is even more delicate. There are different stages of palliative care. Sometimes you get put into a stage where you don’t belong.

I lost over a year of my life to the most painful suffering because of a lack of understanding.

THAT is the danger of being rare.

People hear “pheochromocytoma” and say .. wow this is very rare, I’m not sure there’s much I can do for you.

When often what you’re there for is completely unrelated to the Pheo.

I won’t lose any more of my life to these misdiagnoses, misunderstandings, and misinformation.

It seems it’s up to us to protect ourselves, and ultimately seek the type of care needed in order to live with a rare disease.

Self advocacy saved my life.

It’s not acceptable to go through this time and time again, no one has enough life left in them to gamble it away with misjudgments and mistakes.

Read more below for an update

*I am now recovering and doing much better, for those of you wondering. After I started rehabilitations in the hospital, and received proper care from my super doctors 🥼… my days have been a whole lot brighter.

I will be returning back to the PRRT clinical trial, as it turns out, it actually WAS working for me. So I’ll be completing some more treatments eventually.

For now …

I will continue to use this platform as a way of educating, helping others with diagnosis, and help navigate through this crazy pheochromocytoma pathway.

My goal is and always will be to prevent what happened to me from happening to others. In order to do that I have to share my story, at times like this with such personal and difficult information, it gets really hard for me to share. I have to re-live everything as I write, so I hope you understand my absences.

I hope I have touched your life in some way or another, I can’t tell you how much you all have kept ME going.

Until next time 💖

Pheo VS Fabulous



One comment

  1. This is the reality I want everyone to know. This is what I want to shout from the roof tops. It’s not just the cancer that you have to watch out for, the medical care you receive can be just as dangerous. Your doctor matters, and even the top specialist in their field may not have enough experience with your rare disease. You cannot assume anything. You have to educate yourself and be your own advocate always. Yes it’s hard. It’s the hardest thing you’ll ever do, but this is how you survive when you’re rare.

    Liked by 1 person

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