“It’s not me…!” It’s my cancer!

“Harmonious self regulation is the body’s natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses only”.

Let’s talk about this 👆🏻 I read this last night in one of my @chopra novels.

It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning ⚠️

On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…

Imagine your body being able to cause this stress response to ignite… WITHOUT the presence of a threat, or any type of apparent stress 🤯

Pheochromocytoma tumors produce those stress hormones, the very ones he’s talking about.

Igniting the body’s natural response state to stress, except… I’m stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying “but for you, the chasing never ends. You’re always being chased, and your body can never rest”

We don’t get the option. We don’t have that basic human function to decide if we are happy or not 😂 our body decides for us.

I know some of you may not get this, you may be thinking “you just need to do more inner work to find your true happiness”. It’s a normal response to something people can’t possibly understand, which is why I’m doing my best to explain it.

What I’m getting at is that this is a physiological time bomb we carry around that decides chemically how we’re going to feel for a certain period of time. It’s an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.

That can manifest differently for some. If someone’s untreated and undiagnosed, they’ll feel it normally as if they’re suddenly going to die. It’s not just an emotional response, it’s a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.

For most, they have to adapt to it for a few months and then they get surgery. But me, we’re friends for life. We’re in this till the end, me and Pheo. Pheo and I

Since I’ve done countless treatments, and am well managed with medications, I don’t experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.

I don’t want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. I’m basically a little bomb of chemical reactions 😂

So I thought it’d be a good time to just kind of touch on this subject since I don’t talk about it very often.

I’ll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.

Around 10pm… it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If there’s ever a time to feel happy and at peace… it’s when making brownies

For those of you reading this that don’t have the disease, Imagine your worst PMS outburst you’ve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.

The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause 😐

That’s my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.

Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasn’t accompanied by the physical response I normally experience. It was purely emotional. To me, there’s nothing worse than feeling out of control of my body.

I did everything right, and my body still betrayed me. It also feels like I’m a broken record when I say “it’s not me, it’s my body! I can’t control it!”

It FEELS like a load of BS, even I sometimes challenge whether or not that’s true and I have the damn disease. So I can’t imagine how hard it is for the people who love us that are in the war path when this happens. That’s the part I hate the most. I’d give anything to be able to control myself at least when it comes to the people I love, I’m sure anyone reading this knows the feeling I’m talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, it’s when you react badly to your loved one. It’s wounding in a way I can’t quite explain. The heavy guilt that comes with it, especially as you utter the words “I can’t control it” …

Even if they know, they understand, and they love you regardless, it doesn’t erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesn’t make it worse. But … that doesn’t change MY guilt, rational or not, it still sits heavy in my heart

I’d do anything to be able to control my feelings, sometimes I’d prefer the physical response rather than this irrational emotional eruption. Because then it’s just me that has to feel the wrath of my cancer when it’s physical. But then I remind myself, that’s not true either. Your loved one still very much feels it.

And that’s the worst part for me.

Pheo VS Fabulous

What’s your biggest struggle when it comes to living with this disease?

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