A Month is Never Enough

It’s that time again friends, the time of year when we pay attention to our hearts, how we’re damaging them, and how not to make it worse.

It’s February and that means it’s American Heart Month, 28 days of heart health awareness.

This week, February 7th – 14 is CHD (congenital heart disease) Awareness week.

If I come off as bitter, it’s because I am. American Heart Month gets a whole 28 days, but we only talk about congenital heart disease seven out of those 28.

Now, before you turn the wolves on me because, well, every other medical condition or disease also only gets a month in the spotlight so why should I have my panties in a twist? I want you to know, I don’t think that’s right either.

But if we made every day of every month about breast cancer, colon cancer, heart health, multiple sclerosis, thyroid awareness… you get the idea. The point is this; if we did that, focused on all of those illnesses and diseases every day of the year, we’d be exhausted, burned out, depressed, stressed, and probably feel a little hopeless.

This is how I’m feeling now. Sure, every February, people get a little more heart conscious than they were in January or the rest of the year.

When the world is done giving heart disease its due and everyone has moved on, I will still wake up with the reminder, the awareness that I live with a congenital heart defect. It’s there when I take my medication every morning and night, it’s there when I run out of breath and when my heart starts pounding from five minutes of playing with the dogs, when I feel my chest ache, or when my scars itch. It’s there when I shower. Visible and invisible reminders that I don’t get to shut off my awareness.

Rinse and repeat.

But the worst is when I think I’m doing everything right to take care of myself only to find out I’ve had a setback, or the current therapy isn’t working.

Like right now. I’m in atrial fibrillation and my heart (or pacemaker) hasn’t paced itself out of it this time. I can’t figure out what I did wrong. My blood pressure is down, my weight is down, and my heart is acting like an ass. This is the second time in a span of three months that I’ve been in Afib, and this time it’s been hanging on since November last year.

This is A-Fib in a “normal” heart.

Maybe I didn’t do anything wrong. Who knows? It doesn’t stop the feeling I get in the pit of my stomach or my brain from spiraling out of control with the worst-case scenario. Instead, I’m focused on the symptoms; symptoms which, sadly are also side effects of my medications, and the knowledge that I didn’t notice the symptoms because I have never noticed them. Except for the once-in-a-blue-moon feeling that my heart is either skipping a beat or it’s adding an extra one. I can never tell.

I try to keep my bitterness confined to the lack of adult congenital heart disease programs in the US – in the world.

So please pardon me if I sound bitter about my CHD.

But maybe I need to say this.

To tell you how furious I am with my own heart. Because, maybe there’s someone out there who’s bitter about their invisible (or visible) illness and is pissed off that their body doesn’t behave as it should, and the world only dedicates 28-31 days out of the year to awareness.

If that’s you, I see you. I see your irritation and bewilderment when you think you’re on the right path only to be thrown off course. I hear you when you whisper to yourself, “why me?”

I wish I had a solution for you. For me.

I wish science and healthcare, and the medications we’re given were better.

But most of all, I wish for someone to hold you while you clench your fists and cry (or scream!) and tell you it’s okay. Let it out.

If you have that, then my wish has come true.

But if you don’t, I’m here.

Let it all out because sometimes a month isn’t enough.