The Scare That I’ve Kept Behind Closed Doors — Till Now

'Well, Jen, this is it,' a columnist thinks in one episode of living with PH

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by Jen Cueva |

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As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is extreme fatigue.

The more I thought about my topic, the cloudier my mind became. But then, it hit me. Why couldn’t I write about my current struggles? If I’m experiencing these hurdles, maybe others experience them, too.

Many assume that I’m an open book. However, much of my life, beyond writing this column, is hidden. I sometimes write about the challenges, but I often close with a positive twist. My posts on social media are often on my “good” days, when I’m dressed and outside, enjoying life. Writing about my experiences with pulmonary hypertension (PH), I feel like I’m already putting my life out there for the world. I think that’s enough.

But is it?

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Because parts of my life with PH are hidden from public view, I relate to the secrecy in murder mystery shows like “Behind Closed Doors.” The idea of the show is that those outside looking in have no idea what goes on behind closed doors. I started thinking about how this relates to life with PH and my coexisting conditions.

The clues may be buckets of tears cried behind closed doors. Or possibly the blankets and pillows across our couch or floor, evidence that I’ve had downtime. Maybe it’s the yelling as my family and I try daily to balance life in general with the weight of PH and other health concerns, like anxiety and chronic kidney disease (CKD).

Am I doing myself and my readers harm when I don’t share every little struggle? I don’t know the best answer. But I think there should be a balance between allowing the world to view our lives and sharing certain specifics with only a few close loved ones.

Here’s one story I’ve decided to share publicly to help others who may be coping with struggles.

A few weekends back, my husband, Manny, and I were watching a comedy movie when I jumped up from the couch, complaining that I was hot. I felt lightheaded and dizzy as I made my way to the kitchen. Of course, he jumped up and looked me over, scanning for anything out of the norm. He asked me several questions to try to pinpoint what caused this attack.

Because I’ve experienced “seizure-type” episodes before and that feeling of déjà vu came just before the other symptoms, I believed this attack was not new. Yet it’s still a mystery to my medical team and me.

Manny helped me sit back on the couch as he brought me some ice water and continued looking me over. I remember him saying, “Stay with me, Boo,” in a shaky voice. He recalled that I fell back on the sofa and was unresponsive for what he thought was seconds, but felt longer.

Then, I remember sitting up and asking what the hell had just happened. Like him, I was scared to death. In those few seconds, I thought, “Well, Jen, this is it.” But the PHighter in me said, “No, it can’t be; I have so much left to do and see.” This couldn’t be my ending, as my daughter, Kayla, was thousands of miles away, and I couldn’t do this to her, Manny, or others.

Next, I remember getting out of a cold bath, which I later realized was his idea to cool me off. I think that shocked me somehow as after that, I was back to my norm, or almost. Immediately after, I experienced extreme fatigue.

Now, weeks later, Manny and I are both paranoid that something else might come. Not only are we on standby, but others are, too, because Manny thought it was important to share this with Kayla and my mom. We’re all on guard.

Some may question why we didn’t call 911 or go to the hospital. Manny says he asked me several times, and I was adamant about staying home. After several tests the last time, there was nothing they could find, possibly because I wasn’t actively having a seizure. Once a few others knew of this latest episode, I agreed to see my primary care physician (PCP) if another occurs.

In fact, I have an appointment next month with my PCP and will ask her thoughts and possibly have her refer me to a neurologist she thinks could decipher this mess. If anything like this happens again, I imagine Manny will automatically call 911 because I’ve never seen him this frightened.

As in the show “Behind Closed Doors,” no one truly sees the complete picture when only my husband and I are inside; it’s more like a trailer for a movie.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Cathy Brown avatar

Cathy Brown

So sorry you're experiencing yet more challenges. Those episodes sound really scary! And I'm glad you shared. It's good for me to see that others sometimes struggle to remain upbeat because I sure do.

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Jen Cueva avatar

Jen Cueva

Hi Cathy,
We all do certainly have our struggles and days when it's a challenge to remain positive while frightened. That's when we lean on others and share those struggles, so we feel support. You're an excellent example of doing that in the PH News forums and by reading and offering your thoughtfulness here.

Thank you, my sweet PHriend. I appreciate your support and taking the time to comment more than you know.

Take care and enjoy your weekend,
Jen

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