Select Page

Owner Of A Broken Heart (Much Better Than Owner Of A Lonely Heart)

Hey, The Band, February is Heart Awareness Month, and we’d love your story.

This is my story:

Most of us, well, we don’t think much about their hearts.

 

From A&P, I saw precisely what one looks like and was a little disappointed. It also looks like a fatty Nerf football, which doesn’t do it and it’s job any justice.

I know I’ve waxed poetic about the brain, but honestly, without the heart? There would be no brain function.

For years, I simply ignored my heart because, well, it worked. It’s a luxury most of us don’t have to think about until we’re old and wrinkly. Yeah, yeah, yeah, I mean, I KNEW about a heart healthy diet, I knew things could happen to your heart, or you could be born with a congenital heart defect(s).

The first time I became aware of my heart, I was leaving Las Vegas (no, not that depressing movie).

I’d had a migraine, because, obviously, VEGAS, so I popped a few triptans into my mouth and let them melt in my mouth. I’d not had luck with them so far, but my ancient, forgetful neurologist insisted I try them. He even gave me a garbage bag full of samples, (which is neither here nor there, excepting that if I’d tried to travel with them, I’d have been accused of drug trafficking), and urged me to try these breakthrough migraine meds.

Which leads me to the plane going home from Vegas.

I’m not a nervous flyer, I wasn’t stressed, I wasn’t upset in any way. In fact, I felt great.

Until my heart started a rockin’ beat in my chest. Started, I looked down at my chest to note that while it felt like my heart was going to burst through my chest wall and flop down onto the tray table like a fish out of water.

It took a second because it made things a bit blurry, but I realized that I was experiencing palpitations. So much for my garbage bag of triptan samples. When I returned to the neurologist, I mentioned my rockin’ heart beat and he asked, “are you sure?” (which he may have been directing at old skull on his desk) and I assured him that yes, I was entirely sure. He explained that it was a rare side effect of the triptans, but did look a little oddly at me – I think he’d finally realized who I was.

BAM!

No more triptans. It wasn’t a huge deal – they’d not really helped and shit, heart palpitations aren’t a joking matter.

At this point, I should have seen a cardiologist.

Clearly, I did not.

Years later (late 2016), I was admitted to the cardiac ICU after going to the ER to figure out why I’d been falling so often – now sober, it made no sense. They ran my labs and my calcium was super high and admitted me. They twerked around my medications a bit, and kept me hooked up to that medusa-like EKG for what seemed like days because it probably was days. Outcome? Prolonged QT-syndrome – chemically (medication) induced.

I should have seen a cardiologist, but I was homeless and broke and let myself forget about it. I mean, it stayed there in my mind, gnawing in the back of my brain stem, but still, did nothing.

I’m a terrible patient.

Last year, I’d found out that my mother had hypertrophic cardiomyopathy – which has a genetic basis, and ignored it again.

Finally, after that stupid little voice in my head reminding me in increasingly annoying levels that hey, this heart-thing is important, Dumbo, I made my appointment at a random cardiac clinic near my house. I went in, Nathan in tow, expecting nothing whatsoever to be wrong. I mean, really – I had enough issues already – and my heart, with those few minor exceptions, was fine.

I got to wear a cardiac event monitor for 30 days (somehow it ended up at 35 days) and every single day/night I wore it, I was in hell. The electrodes itched, they popped off randomly, and they’d choke me now and again. Which is why I took it off around day 20, waiting for the call from the company that monitors for abnormal rhythms, and since I never got the call, I never put it back on.

Bad, BAD patient.

During my scheduled ECG, I laid on the table, knowing they wouldn’t find anything. I mean, I didn’t even think I HAD a heart, much less problems with one.

A couple days later, I was told to get a cardiac MRI. At this point, I kinda rolled my eyes because CLEARLY THERE WAS NOTHING WRONG.

Several days after THAT was complete, I was called back into the cardiologists office, again, Nathan in tow.

“It’s fine,” I told Nathan on the 3 minute drive to the cardio practice. “It’s not a big deal.” Nathan didn’t look like it was so fine, but for all I knew, he could just have been constipated.

My cardiologist steps into the room and starts with, “we’re going to send you downtown to Northwestern,” and that I needed “a genetic screening” because I “had hypertrophic cardiomyopathy.”

“Okay,” I replied, thinking I was making a major gift for geneticists everywhere. I mean, certainly my genes were awesomely superior.

In the meantime, Dave and I worked out a plan to take the kids to a pediatric cardiologist.

The genetic test took approximately 100 years to complete (I never said that I was good at math) and had a failure rate of 60%. Thankfully, my body, like me is highly competitive, and it did work because I was soon to learn that I’d had had five genetic markers for the test (four of which the meaning was indeterminate). The one that I DID have showed that my HCM was genetic, and I had a 50% chance of passing it on to any of my babies.

My heart sank at that – you hate to leave a genetic legacy like THAT to anyone. I’d prepared myself for it, however, because what else beyond teeth-gnashing and pearl-clutching can you do?

At their appointment with the pediatric cardiologist, their hearts were examined and they showed no signs or any development of hypertrophic cardiomyopathy. They’re young, of course, and the yearly monitoring will help the doctor to catch any new developments in their hearts. Plus, I mean, it’s a combination of gene mutations that cause HCM, and with all genes considered, there may be protective genes that reduce the chance of the development of HCM, even if they are carriers.

At least, that’s what I tell myself.

My geneticist was kind enough to send out kits for the kids, and in approximately 150 years, they will find out if they’re carriers.

Until then, we’ll wait and see.

Great.

If life has taught me nothing over the last five years, it’s this: life is precious, precious gold, and if you squander it away, whelp, you’re probably not going to get a second chance. If you want to make your mark in this world, get the fuck out there and do it. Don’t be scared, fear can be a good thing – it means you still have something to live for.

“We’re all going to die. We don’t get much say over how or when, but we do get to decide how we’re gonna live. So, do it. Decide. Is this the life you want to live? Is this the person you want to love? Is this the best you can be? Can you be stronger? Kinder? More compassionate?

Decide. Breathe in.

Breathe out and decide.

Nothing is permanent you’ll never know when your time is up.

So do it. Live.”

-Richard Webber

Dose of Happy For 2019

This oughtta be pretty easy.

I’ve got a big ole dose of happy today.

It’s 2019!

I trust that you all have had a wonderful winter break with the kidlets, a Happy Hanukkah, Merry Christmas, Happy Kwanzaa, Awesome Festivus and Amazing New Year!

Mine has been great and today is being spent getting the decorations down, my calendar organized and my plan for implementing the few resolutions I’ve made for myself written down.

Here’s to a full year of happiness to you and your loved ones!

Share your Dose of Happy on your blog, on Facebook, on Twitter (#DOHMonday #WithTheBand) or write it on a napkin. Link up below and show the others some love!

Ask The Band: What Would You Do?

Hi The Band,

I feel kind of dumb typing this out, but I need to talk to somebody – out of respect for my husband and his feelings, I can’t tell the people I’d normally go to for support. I’m not even sure where to start, so forgive me if this is disjointed.

I’ll start here: I have an incredibly complicated situation with my in-laws.

Some background: my in-laws are lovely people, and I genuinely love and care for them, BUT they drive me a bit crazy. Sometimes, my in-laws act in a less than socially appropriate manner – they want to be as close as possible to my family and me.

Before my husband was born they had a stillborn daughter, followed by my husband (who is healthy), followed by 10 miscarriages. Then, my in-laws adopted my brother-in-law, who has had mental health and behavioural problems from the get-go.

I don’t think they’ve ever really dealt with the death of their daughter. Back in those days, baby losses weren’t really acknowledged, you know? So when we got married, I was embraced as the daughter they’d never had, and frankly, I felt smothered by their desire to know everything – to be a part of everything in my life. I’m a private person and feel uncomfortable answering questions about my sex life (why in the world would you want to know what your son and I do in private?!) or other personal stuff from my husband’s parents.

Anyway, the smothering got worse when my daughters were born. I totally understand how precious it is for them to have granddaughters, particularly after the pain they’ve experienced, so we tried to be understanding. Although there have been issues over the years with boundaries being crossed, we’ve worked hard on getting along, and my girls have a good relationship with them (I’m super careful not to say negative things about them).
Fast-forward to a few months ago.

My father-in-law came over, and as we had some errands to run, he offered to look after the girls. No big deal; that’s happened plenty of times before. This time, though, while we were out, my oldest daughter called, upset, and begged us to come home NOW. We did. She was settled; everything seemed normal, but after my father-in-law had left, I asked her about it. She said she had felt really uncomfortable around him and didn’t want us to leave them with him again.

I felt sick.

She assured me several times (and has when we’ve discussed it since) that he didn’t say or do anything wrong, didn’t touch her or anything like that, just that she felt really uncomfortable. She’s very open with me, and I am confident she’s not lying; she seems really confused about why she felt that way, but is adamant that she did feel that way. Thinking back, I wonder if it was a culmination of my in-laws’ more “natural” approach to things (e.g. they had a naked photo of themselves kissing on their fridge for a while (just a Polaroid, not an artsy one) and on one occasion my toddler had gone into the toilet with him and he didn’t send her out (I called her to come out and he was cranky about that).

I wonder if it was something like that.

I genuinely don’t believe that he would molest a child. One of the things I really respect about my in-laws is that they supported a childhood friend of my husband who had been molested by their minister and went to court to testify, despite enormous community and family pressure not to. They lost “friends” through that process, but did the right thing.

I really don’t think he has done anything to my daughter. HOWEVER, obviously, I will never leave her in a situation where she isn’t comfortable, so my in-laws won’t be babysitting any more. That’s really awkward, though, because they’ve babysat before.

My husband and I have talked and talked about it and just can’t find a good way forward. My in-laws want as much contact with our kids as possible and now want sleepovers, too. We won’t let that happen, but how can we possibly explain it? They would be SO hurt, and I think their good relationship with our eldest daughter would be very damaged. It would be impossible to explain in a way that doesn’t hurt their feelings, and honestly, there is NOTHING they could do that would make it okay to look after the kids again. My father-in-law will forever have this question mark lingering around him – since I don’t know why my daughter was upset and uncomfortable with him. My mother-in-law has MS and can’t cope with them on her own. It’s just a nightmare.

My husband is so sad that we’re in this situation. He loves his parents and wants them to be happy, but what they want isn’t a possibility. My littlest daughter is only 2, so I see years and years ahead of conflict about access to our girls. It’s meant that we never leave the kids at the moment because if they hear that we’ve used other babysitters they’ll be even more hurt – no more dates or possible weekends away. I don’t see a good way forward.

*sigh*

I don’t actually know if I even want this published, but I just needed to get it out. I don’t want to go on and on to my husband because it’s so hard for him but it bothers me everyday, and I just want to bounce it off of somebody, you know?

Anyway, if you’ve read this far, thank you for your time.

What would you do? Am I making a big deal out of nothing? Or am I not reacting enough? I’m going nuts just thinking this out!

Ask The Band: How to Make a Father Be a Daddy, Too

I have so many different stories I want/need to share with The Band, it is hard for me to sit down and write just one. I think I have one that needs to come out now before I explode, though.

In another life, I was married to my high school sweetheart. I was an Army wife and a stay-at-home mom, and I think I was pretty damn good at it. I thought things were perfect. Sure, things could have been better, but the grass is always greener, right?

My husband left for Iraq before our 3 kids were even in school. He was gone for 2 years. A lifetime happened in those years he was away. We grew as a family. He came home expecting us to be the same, and we weren’t. He came home from Iraq and was expected to be a family man, father, husband again after being a bachelor of sorts while he was gone. Things happened; we divorced. It is still hard for me to accept. He was my world! I’m moving and trying to get past it, though.

I do pretty well until he calls and says things like “I love you,” “I miss you,” “I want us again.” I try really, really hard not to, but sometimes I fold. I do love him, miss him. This last time though, I told him NO. Not until you are no longer with your girlfriend. Not until we go to counseling as a family, a couple, and you alone. I also told him that I want more than just to be with him: I want my kids to have their DAD. They deserve that. I told him taking them for a couple hours every couple months and canceling on them 9 times out of 10 is not all right. I am NOT covering for him anymore. He agreed. Promised to take the kids 3 times now.

And guess what? He has canceled every. single. time. I have been wiping tears and hugging hurt little people for 2 weeks now. He doesn’t get it. He always says “sorry, something came up.” I tell him “take them with you,” and his response is “I can’t afford it.” WHAT! I am raising our children with NO help from you! Nothing. Okay, I just started getting child support again, but I am not talking about the money; I mean emotionally, physically. They just want to be with you. They don’t care if you sit on the couch or in the car. They would LOVE to just be near you. Believe me.

I am so tired of covering for him. I can’t handle the questions: “Am I not good enough for Daddy?” “Why am I not special enough?” “Do I have to change so he will love me?”

How do I answer those? I don’t think my hugs and answers are enough anymore. I think my kids, my little hearts, are starting to think I am just blowing smoke.

Help me, The Band. How do I fix their hurt?

The Spectrum of a Bad Day in a BPD World

“How are you feeling?”

I hate that question more than anything. Sometimes I don’t know how I’m feeling. Other times, I’m too overwhelmed by feeling tired to feel anything else. Then sometimes I really don’t feel like blurting out, “Well, today I’m mostly just suicidal with a dash of anxious, cranky, and irritable.” Who wants to hear that?

Okay, yes… there are a handful of you who really do want to hear that so you can help, get me help, or stay out of my way. I understand that. I really do. But sometimes when I feel like that, and it’s just a feeling – not a threat toward action – I really do just need to keep it to myself.

Why cry wolf?

If every time you ask how I’m feeling, I answer suicidal, how will you know the difference when I come to you and ask for help? That, and I just don’t get off on drawing attention to how I’m feeling when I’m feeling low and/or below. Honestly though, more often than not, I just feel tired or cranky and nothing else is really noticeable on my bad days.

On a good day? Oh, you’ll hear about those!

Thankfully, I’ve had them more often lately!