Wednesday, December 13, 2017

Note To Self: This is Not A Tragedy

If I could ask one single thing, if I could have one wish out of life, I think it would really be that my story is not a tragic one. That it was not something you heard and go "well, how horribly sad." 

It doesn't mean things have to go right all the time.

But, pff, wouldn't that be nice...

But just that it winds up an uplifting story, that would be enough. 

A lot of the pulmonary hypertension stories I get to see about women who are my age are literally testimonies of bravery. And in most of them, I see them surrounded by family. They darn well should be, and everyone deserves to be, but particularly in that situation. 

I don't have the primary PH form they initially thought, just a lesser crud that should improve with access to a breathing machine overnight, as it has a relationship with sleep apnea. It's not a good thing to have, and I've lost some lung power and gained some crossed heart wires, but all in all, it's a walk in the park, especially in comparison. 

I'm grateful for that. Very grateful. That turned a monster who was about to eat my life alive into some kind of poisonous snake I have to just go out of my way not to step on. It's a totally different situation. A far easier one than the people whose stories have inspired me, and the PH community who helped me and answered my questions with a new diagnosis.

And yet, I'm still admittedly kind of jealous of the people whose parents hug them before surgeries. 

Of the people who have parents who celebrate their accomplishments. 

Of the people who know in their life adventures that a safety net exists. 

For those of us who had an addicted parent, an abusive one, a mentally ill one, or the winning combo of all three, it's this weird reminder to be sick and to have all of those people who were supposed to love us just be absent or actively abusive (or absent because their default is actively abusive). 

It still hurts. You'll really have a lot of moments of wondering why you weren't good enough. 

I won't ever forget the kindness people who weren't obligated by familial ties showed me or my family. 

The friend who tried to show up at my house to be with my children before what was supposed to be a 5AM surgery, the one who celebrated with me when the more dangerous diagnosis was officially kicked in the butt. 

But it's a not a switch that gets flipped, it's more of a journey, the coming to terms with the loss of something you didn't really have. Being that sick made me really frightened that my husband and children wouldn't have everything they needed when I got worse or passed away because neither he or I grew up in functional homes (which might explain why we were so close in college when we met-there was attraction, shared interests and views, but there was also the fact that both of us were survivors in different ways). 

The people who showed up, who loved us by choice, did help that. They may never know how much they helped, even if I told them every day. 

But I sometimes have moments where I look back on my family history and think, well, how horribly sad. 

But their stories won't change as long as they don't.

Mine, though, is still evolving.
And, hopefully, it will be one that people can hear and think that it's motivating, positive in one way or another. That would be enough. 

I've recently tried to reframe the "why did this happen to me" with the "what led me here, and what can I do with that?" Days where your heart feels a little punched in the face, it does help. 

Stoicism also helps, and reading daily meditations about that helps to shake off the residual funk. (People get a little put off when you mention Stoicism, but just trust me- it's not the weird, cold, unfeeling thing modern culture kind of painted it as; think of it as a way to deal and handle the bad stuff that happens, not one that will make you impenetrable to it).

There is also a great website here about modern stoicism, and the author of the blog also has a book about just that subject if you feel like this philosophy has anything to offer you. 

I have to keep in mind that some days are just going to hurt a little bit and that's fine. I have to keep in mind that I'm trying to be all the things that weren't in my young life to my children. I have to keep in mind that it's possible to keep moving on, and this is not going to be a tragedy. 

Sunday, December 10, 2017

A Review of "Show Your Work: 10 Ways to Share Your Creativity and Get Discovered" by Austin Kleon

That guy who wrote about stealing ideas like an artist has another book about connecting with people through what you do. "Show Your Work" by Austin Kleon is a short and easy book to get through, and I kind of think of it like a sticky note all of us probably need to go back and read even if this stuff sounds like common sense. 

And most of it probably is common sense coupled with some modern tips. 

That said, some pages gave me a lot to think about. To connect with people requires both that you showcase (honestly) your stuff and then go out and support other people. That second part often trips me up. I'm just as shy in the digital world, I promise. 

And sometimes life with a family is so busy that I can't even get my work done, let alone uploaded and then start working to support other people. That just has more to do with the particular season of my life as a mother of small kids with an illness than it does with anything else, but it's a hurdle I have to be aware of if I intend to make it over it. 

And that's what this little book is about, just awareness of what you need to do to make a name for yourself. 

This book isn't just for artists or writers or photographers. I'm looking into getting a copy for a friend of mine who runs her own business because this advice applies to anyone who needs to be conscious of getting client attention or noticed for their work. 

Show your stuff. Show what you do that you love, show the intricate details from behind the scenes, show other people's stuff who need support (WITH APPROPRIATE CREDIT) and show your story. And use books like this as sticky notes to remind you about doing that. 

This is worth a read for literally anyone trying to make a living doing what they are passionate about. 

Saturday, December 9, 2017

Some Serious Praise for Channel Zero

I hadn't heard a word from anyone about  SyFy's Channel Zero when it aired, and had I not come across a review of it recently, would not have known it existed. 

That kind of embarrasses me, because while being as much of a tech introvert as I am a daily life introvert kind of interrupts keeping a pulse on horror news, I feel like I should have known about this to cheer it on from day one. 

But I'm glad I found it, so there is that. 

If you're searching around for things to watch after binge-watching Stranger Things 2, and you don't mind things getting weirder and insanely darker, you will probably find Channel Zero a really great fit. 

The acting struck me as wonderful. The first season centers around child psychologist, and he's portrayed just as soft-spoken and evened-out as you would expect him to be even in the deadly situations he keeps finding himself in. The second season starts out in a typical teen horror movie theme and runs it right the hell out of there on wheels of fire with interesting portraits of who the teenagers are as friends and people. All this is set against scary backdrops, creatures, and goings on that never ring as trite and are sometimes eerily poetic. It has good reviews, but I get the feeling this series is underrated for everything it accomplishes. The story lines are based on some of the best Creepypastas. 

Watching them as a fan of the genre, you can't help but think that this is the kind of beauty possible only in dark storytelling. And that is amazing.  

There are two full seasons as of right now, and should be a third in 2018. You can find "Candle Cove" of season 1 and "No-End House" of season 2 on Amazon Prime currently if you feel this calling to you. 

A Review of "Fliers" by Nathaniel Russel

You know what the best part of walking around modern art museums is? Those moments where you find something both deep and downright damn hilarious. It doesn't happen often, but when it does, it is the best. 

Art can and is supposed to do a lot of things. The part of it that can crack you up is special, even more so in this day and age.

That's what this book is, that is all this book is. 

A series of posters that feel for all the world like part of a visual art museum. A hilarious part. My husband and I loved it, and our older kids begged to take some of the posters for themselves. Needless to say, this is a good gift idea. And my copy (no, I didn't let the kids take any pages out) is going to a friend with a lovely and strange sense of humor. 

If you need a break from the world, smiles at the absurd, or just some clever stuff to hang around your house, then "Fliers" is perfect. 

**I received this book from Blogging For Books for this review**

Friday, December 8, 2017

The Snowy Day

Or evening, actually. 

Snow didn't hit until pretty late and, knowing it would melt before noon, I and many parents around Houston woke our kids up early to play in the snow before school. My son's teachers were able to take their students outside before the big melt, but my oldest would have missed it save for the beautiful, cold drive to her class. Our youngest had never, ever seen snow. None of them could believe waking up to everything wrapped up in a sparkling white blanket. 

The last few years it snowed, 2008 and 2009, were when my middle child was born and around his 1st birthday (we recently celebrated his 9th with a Christmas themed-outing). He was extra excited it came back around after all these years without it. 

We're snow-spazzes around here, but most of our winter holidays are spent with us gazing longingly at portraits of traditional winter places and wishing we had a few days of that here (not all the time, as we do enjoy shoveling all that sunshine out of our driveways, but as a seasonal beauty-snow is amazing). 

It was a strange thing seeing layers of snow on our palm tree-lined streets, but we're so grateful. 

And on a surprise snowy day, there isn't a better book than Jack Ezra Keats "The Snowy Day". Like snow, it just feels like magic. 

We also watched Amazon Prime's animated adaption of it, which is just beautiful, and a sweet Christmas show to make a family tradition. (We all watched it last year, too, but it was followed by the kids asking if it will ever snow here. This year, it was definitely something special). 

2017 has been one for the memory books. 

Tuesday, December 5, 2017

"The Dark Tower I: The Gunslinger" or How I Found A Stephen King Book I Liked.

I'm not a huge Stephen King fan. There, I said it. 

I know, it's weird to be involved in the horror genre and not worship him. 

And while I didn't like many of his books, it doesn't change the fact that he did so much for writing and horror that he deserves his rightful place as a master of both. And his life story is, like most of the masters of anything, uplifting for a lot of us. 

My dad talks about reading IT in nearly one sitting. If you knew my dad and how little he reads horror books, you'd know that was really something. 

For some reason, with any of the stories I tried, I felt that the characters weren't what I personally needed or liked. They weren't sympathetic for me. 

It doesn't mean there was anything wrong with them, but I've noticed something; having the privilege of being friends with some other horror writers- we all have this favorite bubble of brand of scary. Mine is more mythic. A place where terrible, horrible things happen but there are heroes, real heroes, as reminders that things must somehow be set right again. 

My husband rented The Dark Tower film for me, and while the movie does fall short of what it should stand as, the ideas of it were intriguing. And, I thought, hey, this right here sounds like a mythic horror. That's my home. I need to give that a try. So I hunted down the first book in the series, The Gunslinger. 

I had the chance to read it on my second overnight hospital stay for sleep observation with a face-hugger oxygen mask strapped to my head. I finished it in that evening. Not as impressive as my dad's binge-read, but seeing as how I wasn't sure anything King wrote was ever going to speak to me, this was nice. 

Roland is a more fallible kind of anti-hero than some of my favorites (like D) but still a mythic archetypal hero. The bad guy, the man in black, fits in that theme, too. But, around that skeleton, there are so many fleshed out characters and stories and creatures and scenery that I found myself really enjoying the novel. 

The language in it is beautiful. Even the gory parts of it. Or especially the gory parts, which will stick in your head long after you don't want them there anymore (like brains and blood shooting out like streamers...). It was a comfortable and imaginative read on a long night for me. 

So, yeah, I guess I'm kind of a King fan now. I'll definitely be looking at getting the other books in the Dark Tower series.

If you haven't seen the movie and have heard bad things about it, watch it anyway. If nothing else, Elba and McConaughey carry it really well and their scenes together are worth seeing. 

Wednesday, November 29, 2017

My Journey with Sleep Apnea Related Pulmonary Hypertension

I've always been a medical weirdo. 

Allergic to my own body, always heavy,  sinus tachycardia, with a left kidney that forgot it was a kidney, I was still relatively okay or could pretend that I was. 

But nearly four years ago, my heart jumpstarted itself to over 200bpm. 

I was heavily pregnant with my rainbow baby and alone in my house with just my preschool-aged son. 

I can still vividly remember that feeling-that I was going to lose this child, too, that I was going to die in the house and leave my preschooler without a way to get help, that this. was. it. 

I grabbed my son, I grabbed the phone, and I ran outside to my neighbor while I called for help. Having had more episodes like that and knowing how debilitating they can be, I look back on that like a real act of strength and determination, but it wasn't enough. 

My body continued to deteriorate throughout pregnancy, and I stopped breathing during labor and so did my baby, who was born at 35 weeks with only a nurse attending the lightning-fast delivery, and the cord was around my newborn's neck. She was born sick and with torticollis and severe reflux and needed all the help we could get her; including a physical therapist and occupational therapist. And my body was on a slow descent, too. 

I kept trying to ignore it. That had worked with my other medical problems which eventually seemed to take care of themselves. 

I went back to university while taking care of my family and new, sick baby. And on the weekend I had finally graduated, had the biggest tachycardia episode since my dangerous pregnancy. 

A beta blocker for irregular rhythm helped and I thought that was all I needed, but the episodes kept coming and my cardiologist just shrugged it off. I switched MDs after my friend told me about a local cardiologist that specialized in arrhythmias and after rounds of testing that I needed, we found it.

High lung pressure. 

When I heard that it wasn't my heart, I thought that was great news. "No, actually, this is very bad," My doctor said, his normally smiling face was somber. I'd never even heard of pulmonary hypertension. I didn't know it was a thing, or that it had a relationship to the tachycardia episodes I'd been plagued with. 

We hoped it was sleep-related, and the signs seemed to fit. Sleep apnea-related pulmonary hypertension is the easiest form to deal with, but my test came back negative.

My local care providers wanted to do a heart catheter to measure the pressure in my lungs seen on echocardiograms, but after a failed attempt at surgery, I transferred to my PH center of excellence in my city.

It was harder to get to, required my dad's and my husband's help to even get to appointments, and took forever thanks to the devastating flood, but there I was told that this was not the worst, angriest, form of PH they thought it was. It had to be sleep-related, having ruled out blood-clot related forms. And the damage was mild to my lungs.  

The alarm never went off for my lack of breathing during my next test, but it did record what happened.

A type of sleep breathing disorder was found in my second overnight sleep apnea test. 

I can't even describe how thankful I am about that, which sounds stupid but finally knowing that we have a definitive diagnosis that is treatable is a victory beyond belief for me. 

I've gone from being told I would be dead in 1.8 years to having a chance to live without being overly plagued by episodes in which my heart cannot beat correctly and I can not breathe. It's still a little scary. This has been going on for a long, long time. I wonder what it has taken from me and what I will get back with the right treatment. With SVT I guess I won't be off of my beta blocker anytime in the near future, but I have heard people say treating this helps everything, so maybe at least it will improve.

The CPAP machine won't be enough, as diet and exercise play a role, too. I can't wait to be able to actually move around more, I do okay right now but there is a huge difference in what I can do versus who I was athletically before this started. 

This is the finish line in a long, hard race in which I was only one step ahead of a monster. 

I can't wait for it to be over with and to start a new chapter.