Testing Positive


Can our lives of constant tests be a positive?


Above: Super-robot-woman just kicked this treadmills belt. (running belt is the technical term for what you walk on on the treadmill lol .. yes i’m a nerd, comes with the territory)

Testing, Testing, Testing

The Positives

It doesn’t have to be a negative.

This life of testing is just all we know. We can’t imagine a life without going to get blood tests, EKG’s, Echos, unexpected emergency hospital visits at the most inconvenient times, etc.

We also can’t imagine what it’s like to NOT know how awesome we look in hospital gowns

at every stage of our lives. ;P


As a girl it’s fun to spin around, pretend you’re in your dream princess dress and pretend

you’re anywhere else but where you are.

As a boy, I’m guessing it’s fun to imagine it’s your Batman or Superman cape and you’re flying around to save the world.

CHD Parents – It’s very helpful when we have adults who help play into these fantasies that help distract us. Even as we grow into teenagers and adults it’s fun to keep a sense of humor and fun imagination to help each other through the stress of doctors appointments and long tests.

Testing can be turned into positives through all ages with a great imagination.


I am 30 years old and the hilarious stories my boyfriend and I come up with when I’m all dressed up in my hospital gown that is swallowing wires and tubes, while I look like an alien-robot are absolutely hilarious. Haha.

Another positive of constantly being tested throughout your life is that it is comforting to know where your whole body stands – especially as you get older!

Since our defects are within the main organ that runs your body: the HEART, everything is constantly being tested because EVERYTHING can cause heart damage if not caught. Therefore, if something is going on in some other organ, or any part of your body for that matter, chances are they will catch it. If not we will get sick really quickly, as we do.

Always knowing where my body stands personally motivates me to be healthier.

Everyone has different needs to maintain their health because we all have different defects and those different defects affect our other organs.

This is why it is so important to know YOUR OWN body!

Watch / listen to learn more about the importance of figuring out and maintaining your individual body!

I have had my years of avoiding doctors. I have had my internal struggles of hate and rebelling against my disease for the first 27-28 years of my life. Not consistently, but also … consistently. .. lol .. That’s where all of the depression, anxiety, anger and emptiness sneaks in.

During the times you think you feel on top of the world and then BOOM you get sick and taken down without choice.

Then begins the cycle of hating yourself all over again.

We usually don’t just get sick like “oh I have a cough/cold/flu, it’ll go away.” It’s like “I’m coughing or may have the flu and if I’m around any humans that have one tiny piece of bacteria around them this cough or flu symptoms will turn into bronchitis or pneumonia and then

I’ll be in the hospital if I even survive.”

Yes that’s technically called “Catastrophizing,” however it’s also a very REAL reality for us.

With that said, for example, although there is a lot of anxiety and build up to cleaning out your car or organizing the garage / junk room / drawer(s), once you do it it’s like YAYYY!!!

And then you feel a little lighter.

That’s how I feel about going to the doctor. Not just my cardiologist, just any doctor. It’s hard getting myself there, but once I go I’m proud of myself and happy for going.

It feels like some type of internal cleanse and huge weight off of me that I didn’t even know was lurking on my shoulders.

Every time I go to a test or an appointment, I know a little bit more about my insides (which I then celebrate by destroying my insulin with ice cream cones or something childish because we are and always will be kids at heart – no pun intended haha).

Lastly, another positive about this life of tests is you get to see your insides!

It’s fun to see your heart in real life, and all of your other organs on occasion. It makes things real.

I’m like la la la laying there during an echo thinking about 500 different things and then all of the sudden I’m like “awww, hey there little guy .. wow you’re REAL! I need to take care of you …oh and sorry for my teenage years and early twenties .. I promise I’ll make it up to you!” ;P

Seeing our organs make it REAL and makes you want to take care of them better.

Especially when you’re seeing them on a regular basis. And especially when you have awesome Echo Techs who actually talk to you and explain things. They are the best!

Another favorite positive is having nothing wrong and my own diagnosis of myself

confirmed at the doctor’s office.

I’ve always been my own doctor since I could hold a stethoscope and when I’m right about my own self diagnoses I’m like hehe YES I knew it!

Overall, it’s a great feeling to go get check-ups once a year, right? Well multiply that by 100, and that’s what it feels like to be us.

We may not always know what’s going on with our hearts or what they will do next,

but I am thankful for what we do have and that is our life of testing

confirming what every other organ is doing.

Try to allow yourself to appreciate the little things instead of hyper-focusing on the big thing

that we cannot change- our hearts.

Sometimes it’s in the not knowing where the beauty lies.

I hope you can relate to the positives of living a life of tests with me and never feel alone in this.

If you are looking for positives or negatives in something,

remember, anything you look for, you will find. Stay funny my friends. Never stop laughing through it all. Except when the laughing turns into not breathing. Then take a break, drink some water, and laugh again. ;p

Keeping a sense of humor is vital! ;P


“Never doubt that a small group of thoughtful, committed citizens

can change the world.

Indeed, it’s the only thing that ever has.” – Margaret Mead

Thank you for your support.

Thank you for existing.

Your existence gives me hope.

Educate. Inspire. Heal.

Copyright 2019 | By: Stephanie Romer

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