Friday, May 26, 2017

Wrapping Your Head Around It.

I began to study covering my hair awhile back and learning some of the techniques. It's an artform, no question. 

I can think of a few more controversial topics other than head-covering, but it's definitely on most people's-most women's-top ten. Here's a pretty good article on the subject if you want some history on it. And there is a lot of history since many different cultures engage in it. Chances are if you are lucky enough to be in possession of ancient family photographs, you will see someone in headgear of some various type. Some Native American tribes like the Yuchi, Natchez, Creek and Shawnee wore turbans (though that was a boys only thing back then).

There is some argument on whether it came into practice before religion, but from the practical standpoint of protecting your head and cleanliness, I would bet that it did. 

The truth is the decision to wrap your hair probably won't be cut and dry. Many do so for religion, including Christianity. For others, it's spiritual. For some, it's illness. For others, fashion. 

I'd spent another day on a scan table for hours that couldn't accommodate a pillow, and my head was killing me, again, when someone from my support group talked about why she wrapped her hair. 

It sort of stuck as an idea. I'd covered my hair before, but not in the way she had. It was beautiful. The suggestion for those of us facing scary medical stuff is to reward ourselves for the medical hurdles we have to leap with new accessories or scarves, and each time we wear those, we are reminded of our bravery. It also saves me wasting time on styling my hair, which is incredibly thick and long enough again now to be a problem, at a time in my life where I've been told I might actually be running short of time. 

And, if you are lying down on those medical treatment or exam stations for long periods of time, it's slightly less uncomfortable. 

For the most part, I wrap my hair because this is a new time in my life where I have to be a warrior. I have to be a queen. And there are no other options because sick or not, those of us with families have to be that. Wearing something that makes me feel that way has helped psychologically, I can tell. There is an element of spirituality for me with it, but it's more of a private thing. I was taught pretty early on to be ashamed of my hair, too. It was the first thing a lot of people made fun of. This takes it off the table. 

Every person who decides to cover has their own complicated story, all of them are fascinating. 

If you find yourself called to it, don't be afraid of it. And don't treat anyone you see in head coverings any different if you aren't. 

The beauty lies in the choice. 

I don't think anyone should be forced to either cover or bare their hair. The choice, the intricacies of how we express our souls to the world, is the beauty and power behind it. 

For me, it's armor for the coming storms PH brings. It's a marker for my growth and change... sickness forces so much negativity into life-but the growth part, the bravery, is a positive. 

A lot of the scarves I have and the headbands have come from Wrapunzel, an organization who also donates scarves to those fighting cancer, which is amazing. So, if you are looking for a good selection from a place set on doing good in the world, that's your stop. 

Wednesday, May 24, 2017

Drawing With Skinner: The Art Show You Didn't Know You Needed.

Have you seen the new awesome that is the Youtube art show called "Drawing with Skinner"? It's worth looking at. I promise. Not just for people who specialize in that type of dark or psychedelic art, either. 

It's got a Pee-Wee's Playhouse (of darkness) vibe and a little bit of Bob Ross art expertise molded in. But this is mostly a free-form show, he won't tell you how to do a specific tree. Skinner will spin a wheel of fate to find the theme and give you steps like "INK IT!". But, that kind of instruction allows you to be really free within the confines of whatever theme is picked. 

That benefits you the same way sketching will. It's why your art professor told you to carry around a sketchbook. That time spent developing ideas and allowing yourself just to make something, anything, is invaluable to artists. It's what daydreaming is to writers. It's how you grow, it's how you find courage for new techniques or styles. 

Any show that does that and makes art an everyday conversation gets five stars from me. 

It did have some cons, I'm not really into or supportive of drug and alcohol talk. As a child of an addict, I've learned to tune that stuff out. I have literally zero interest. But...I don't control other people: they can do what they chose and talk about whatever they want, and some of that content was expected. It's not enough to skip watching the series, but keep in mind it's not for kids. Turn on Bob Ross for them, instead. 

And if you surf over that stuff, Skinner and his guest get into some important talk too. One of the first questions he asks is along the lines of "who first told you that you couldn't draw?". All of us that studied art can answer that (and about 90% of the time, it was one of our instructors...). They talk about the processes and materials, and for the most part, it's pretty entertaining. 

Combined with watching the artworks develop, I'm going to go ahead and say art fans and artists need to watch it. 

Waiting for an MD appointment, I finished a sketch with the theme of the day the Wheel of Fun picked-"hallucination." My toddler helped me fill in the color while in a waiting room, and this is the most fun I've had working on something I started on because of an art show. I look forward to doing more pieces while tuning into Drawing With Skinner. 

Drawing With Skinner piece "Hallucinate". Instead of canvas and paint
I had to use Prismacolor and paper, and some help from my toddler. The darker shades of ink are digital.
Maybe next time I can be able to use an actual canvas, but paper and Prismas are the king of accessible in my house right now...Anyway, this was fun. Try it. Watch the show, and absolutely try working along with these guys. 

Give the show a shot. You can take a look at some specific pieces by Skinner here to get a feel for the type of art he specializes in. My favorite might be the brain creatures...and don't worry, paintbrushes talk smack to everyone. 

Monday, May 22, 2017

An Angry Sponge That Stands Up For Itself.

I can remember from younger days Damon Knight's warning that listening to other people's advice on writing can really screw you up...

I have literally had to leave certain writer's groups. 
I was sitting there, reading how perfect these authors were so sure they were and seeing them tear apart other people in order to "help". I'm not sure anyone needs that kind of help. If you aren't great, you probably know it, and the good news is that is not a fixed thing. It might take practice, or a good professor, but how good you are is not set in stone. I know I'm not good enough to ever turn down those learning opportunities. But, perfect is not a thing indie authors are going to reach. No amount of belittling will change that.

It might not be a thing any of them reach, but the more money you have, the closer the copy, proof, and smoothing editors can get you. But that kind of perfection in the independant world is often chased and seldom fulfilled. 
It doesn't mean you don't have a worthwhile story.

For awhile I was pretty paralyzed, and even withdrew my first book to be released again after another edit. But the fear of failing, of never having perfection was just immobilizing. 

I had to let that go. And I had to silence the critics. I had to do that in order to try to write again. 

I can't hear that kind of talk from a distance, which is where you should hear it. Growing up how I did, I am still fighting being a sponge. You learn to absorb everything in a toxic home-you learn to walk into a room and soak in the mood to determine safety. You do it to survive and because they are telling your repeatedly that this is what you should do-be this absorbant, catering creature. 

Don't do that in your adult life. 

It's a slow process to shut that off, and until I really can, I find I just have to get out of places where negativity is being thrown around like water balloons.  

Maybe I'm still a sponge, but I'm an angry sponge that stands up for itself now. 

Also, don't let this put you off trying new writing groups. Some are the most lovely people you will ever meet and some suck lemons, you just have to try and see and be willing to leave when it's not working for you. 


Saturday, May 20, 2017

For The Love Of All Things Kind Of Scary...

I was sort of taken aback last Halloween by a young girl wearing a Five Nights At Freddy's costume. But, she was genuinely happy with it, scary as it was, and I realized I'd forgotten I was that kid at that young age...Staying up late to watch things like Vampire Hunter D because the realm of horror was my comfort zone where everything was fascinating and taught you something. 

Some kids may never feel that tug, but I think it's more common than we realize and not every person wants heart and rainbows farting from every smiley-faced package all the time-even as youngsters. 

My older kids are, well, older, and I'd always distanced them from horror stuff. It's one of those things, it can be normalized by other people but shouldn't be initiated I think. And so much of it is inappropriate for kids of any age. But, recently, they've started playing fun horror games like Hello, Neighbor and Tattletail, and Bendy and the Ink Machine (which is like the darkest of the three, so we play these together, and it may end up being too dark). They went there on their own, they loved it on their own. I won't lie, I'm sort of thrilled. Things like FNAF have a following of all ages again suddenly, and I think this is one of those times where it's more fashionable to venture into the darker realm of things. 

We're getting the influx of things like Goosebumps books, too. 

And it's just AWESOME. 

I feel proud of them for not being afraid.

So much in horror is a lesson, a discovery. a good practice run for the monsters you end meeting in real life that walk around like people. 

That said, if neither had ever had any interest in the scary, I'd of still been very proud. But, it's a fuzzy feeling to have that common thread. 

So, if you are parenting a kid who loves the frightening, here are some tips

1. Watch the movies, read the books, play the games with them. Even if you don't like them, that participation matters and you can also gauge that way if it's appropriate or too deep, dark, and scary. There have been historic happenings of mentally ill adults and children getting fixated on all the wrong stuff, you need to be the watcher for those signs and the guardian of what they are exposed to. Being involved with them will help you do that. And bonus, you can talk about and put into perspective everything you encounter. 

2. DO NOT belittle them for liking that stuff or call them weird. Please. You have no idea how long it takes to shake things like that said to you by your parents. You may not understand it, you may be that person that can't walk into a Halloween store without crying, but please don't do this. Remember that horror has been around since we were story-tellers, and it's definitely okay to be a fan of that. It won't always show up at an early age, but mine did and many others did as well. 

3. Support their interests. They like writing scary stories? Ask if they want to join an author summer camp. They like drawing monsters and ghosts? Sign them up for an art class. They like making costumes? Get them supplies to do spectacular stuff on Halloween. 

4. Pay attention to age ratings AND what people are saying about things like indie games. Make sure this is an age appropriate level of scary and the right level for your kiddo. 

So, you know, do all the parenting stuff you normally do for things your kids love.

Friday, May 19, 2017

Body Wars Without Representation.

We recently had another one of the few plus-sized people in the spotlight opt for weight-loss surgery. 
Which, okay, their body, their time, their money, their health...

But boy doesn't it suck to be reminded that once any of them come into the situation where it can be "corrected" that they do not want to be like you anymore. 

Or, I think it does. 

Can you blame them for not wanting to be marginalized or abused just for existing in their bodies? It's not easy. Just existing in a super plus sized body, let alone being out there and active and happy, is an exercise in rebellion. And it's exhausting to do it all the freaking time. 

Dealing with what I am health-wise, where no surgery would even be an option, I try to keep it in perspective. And, unfortunately, one of my risk factors for pulmonary hypertension was being given a dangerous diet drug as a girl of thirteen years old. Something I was given to change my body might be playing a role in killing it. While I hope, for many reasons, that this isn't the cause, I can't understand wanting to change or hate myself at this point. I won't do it. I won't apologize for my weight, I won't be spoken over or down to. I am beautiful and worthy not in spite of my differences, but because of those. 

Our world is so large and awesome that you can't get hung up on the people who want nothing more than to see you blend in with them and accept their ideas or disappear. Even if there are a lot of them. Be so busy with life and doing wonderful things that that criticism has no choice but to die out like the useless noise it is, because if you get hung up on it...It can hurt, it can immobilize. And life is so fleeting that you can't afford to let that happen. 

There is no disputing the scientific evidence that body shaming hurts people, even those trying to lose weight, and that those who approached being healthy in a weight-neutral way were better off. But people who hate others because of their body do not care about your health. Them wanting to hurt you or feel superior is at the heart of that. 

You can tell people who care about health because they will be up to date on the science, they'll be giving their time and energy and money to ways to make that more accessible to every single person regardless of size, class, income, race. And they won't be out there abusing people in any way. 

So, yeah, we lost another representation of us. 

But, hell, maybe we don't need them. 

Maybe it's enough that the rest of us keep existing and being happy with our bodies, and doing important things. Whether we are quiet or loud about that, it's all part of showing that humans of every size can be amazing. 

The most fun I've had doing a digital piece in a long time...

Wednesday, May 17, 2017

Let Me Show You The Thing (Neo by Alphasmart review) and A Chapter.

Have you seen the $300-$500 dollar writing machines that are just word processors? They look cool, and being able to type without the distraction of dealing with either the internet or fighting with a typewriter sounds great. But, don't buy those. 
Best Mother's Day gift. 

Get one of the Neo by Alphasmart models. It's just over thirty bucks. It doesn't load anything to a cloud, but transfers the text you type in line by line, all you do is open a word processing program and use the USB cable to plug in the Neo. It does look a little weird to see it type in the text, but it is relatively fast and works well. It saves in 8 different file locations so you can go through multiple chapters without uploading if you need to. 

You can only see a few lines of text at a time, so you can't get hung up on editing. And the battery life is amazing. 

This has helped me a lot. I know I've mentioned I generally had to revert to handwriting chapters because I couldn't find time on the computer. But man is that discouraging to go through that and still need to type up everything. Somehow it always takes me forever. 

I needed something portable that was of genuinely no interest to my kids. I needed typing not to be another thing on my list, and I needed the gadget to be within my budget, and the Neo helped me with all of it. It's particularly nice now because I'm spending so much time in MD offices and in testing centers that I can get even more writing done. 

I figured I'd share one of the Chapters I'd written with it so far, too. The formatting went fine other than straightening the titles. It's unedited, but I wanted to show how well it transferred over. You'll still be doing clean up, but it's minimal. 

Chapter One

The thing was cornered, but it didn’t have any idea yet. I watched it crawl sideways so quietly I could hardly detect the grating of soft skin on limestone rock. The Carrier was barely breathing. It was just three feet away from Bainbridge.
            That was close. That was too close. A single drop of fluid, a mouthful of breath even, was enough to infect hundreds of human beings. Bainbridge was covered, decked out in the heavy plastic suit and face guard standard issued for anyone dealing with medical waste in the field. But it would take a drop of that body fluid rolling the wrong way when a suit was peeled off: one needle-like tooth puncturing that plastic, and Bainbridge would join the ranks of the zombified Afflicted.
            Three feet was too close.
            The carrier noticed me, smelled me and I saw the grotesque eyeless face star upward as I jumped down upon it. I’d crushed a part of its jaw with the dark gem handle of my dagger on the way down, but the lop-sided mouth fastened around my arm, anyway.
            “You go right ahead, fucker, that won’t save you,” I pushed the dagger so far into the soft spot of the sensing organ in its I lost grip of the handle. The carrier spun backward. It was leaching out the pus from its boils and the inky blood was like a broken fountain spraying in every direction.
            I was breathing so hard it hurt. I looked to make sure Bainbridge had gotten away. It looked like he was approaching and I motioned for him to wait. He was a safe distance and he needed to stay there.
            The Carrier wasn’t moving anymore, the wetness of it soaking into the dusty ground and the flow slowed to a trickle. I felt the familiar sting of the venom sloshing around in my bloodstream from the bite.
            My arm had been padded with a bite guard and the damn thing had broken through it even with a broken jaw. Ridiculous. I sighed and tried to shake it away, shake the pain off. I had little more than four hours before the Heartsease.
            Working off a bite from a Carrier was going to seriously slow me down.
            It hurt, everything hurt acutely. My vision kept trying to gray out, but I’d collected venom so often that I could do this part blind.
            I took the vials from my backpack, they each sat in insulated cases to avoid breaking, but werewolf packs were tightly wrapped cattle skins with ingenious amounts of lacing and pockets and they probably would have been fine riding around.
This Carrier was still juicy. All I had to do was press the vials to the broken skin and blood drained quickly.
            I capped each vial and tucked it back into its insulated casing. Naked empty vials were one thing, naked vials of super infectious agents were another.
            I pulled out my dagger, it would need to be cleaned before I could even walk near Bainbridge. I flipped the corpse back over.
            It wasn’t until now that I saw how skinny this one was. Like it hadn’t eaten in months. It was a positive thing, considering what they ate, but very strange. “You really should have been easier to kill,” I said to it.
            I used my dagger to slit open the unruptured boils from the Carrier’s back and filled the rest of the vials with the pus. I managed to get everything back in the pack but was too weak to stand up.
            “Calling in help, just stay there,” I heard Bainbridge yell faintly.
            My head was killing me. Some werewolves ended up with swollen brains from Carrier venom, and I’d forgotten to worry about that until now.
            A recon team, all wearing the same flimsy crap they’d given Bainbridge, began preparing the Carrier for incineration at the spot. One of them tried to help me up, probably to get me out of the range of the fire so they could get started. I waved them off. I was splashed and nobody needed that risk.
            Finally, another werewolf, still in the same gear, came with the cleaning stuff. I was hosed off and my clothes were taken to burn with the dead creature. My dagger was drizzled with antibacterial and antiviral goo, then rinsed with water from the same portable tank they dosed me with until nothing stank of infection.
            I was having trouble trying to put my new shirt on. Bainbridge, always too dumb to be scared of this stuff, came over to help me get dressed.
            My black wolf ears, unchangeable even in my human form were tightly wrapped and packed down with bandages. Those had been covered by my now ruined hood, but the bandages were clean, and there were three layers of cloth so that if one needed removing, I was not exposed.
            It was not uncommon for wolves changed by the sentient virus Blight to find that parts of their werewolf skin never faded from the human body. But advertising that meant trouble.
            The story we gave was a head injury combined with being born with limited hearing so that using sign language was inconspicuous. I could hear somewhat, but it was limited under the packing. Bainbridge and I were fluent in wolfen signing, having been taught together as small children the rare knowledge of it.
            Bainbridge signed “They say you (were) careless. I had (a) gun. Could have taken a shot if you had gotten away from (it) instead of standing like a giant blockade in front of the world’s skinniest Carrier. People have told (you) you’re not that thin, right?” He let the werewolf with the water tank rinse off his suit and mask before he peeled out of them. Bainbridge hadn’t come in contact with any fluids from the creature, but it was protocol. His clothes were light and bright colors, but that many layers under that suit still cooked humans in this heat. His blonde hair, normally a blue mohawk, was just a wet mess against his face like a short waterfall, and it hid the small black mark under his left eye. That was a mark given only to humans who’d been accepted as werewolves.
            “And if (you) missed, if (you) hit it and pissed it off, it would have zeroed in on you. The things go through humans like sheets of paper. Not worth it,” I signed. I rubbed my head and my burning eyes. “You shouldn’t be out here as bait," I was having trouble moving my hands without shaking. 
            “We’re here together, that’s just how it goes,” he sighed as he signed back. “Just need to trust (me) more,” he said.
I heard one of the field techs say we had collected enough today and that we were free to go, but Bainbridge signed back what she had said to me anyway and I nodded. 

Monday, May 15, 2017

Replacing Messages.

Lately, I tend to think I'm doing pretty good. Then I always encounter something specific that sets me back a few miles. Like a written out diagnosis. Or a damn commercial.

It was a happy, calm Mother's Day where I didn't have to cook and we all went to the park. We watched Charlie Brown (which is like an all-time favorite for me) and got everyone in bed, and then I see a commercial online for Gatorade. No, it's not that I hate the sports drink and it ruined my day. It was a commercial about a baseball player whose mother died from pulmonary hypertension. Because Happy Mother's Day, I guess? 

She's suddenly weak, all the fun stuff she used to do with and for her kid disappears, and we cut to her asking him to take out the trash and him breaking down because he is having to take care of the entire house on his own-and then she's dead. 

Thanks for that. I'd nearly forgotten the pale shadow of death was hovering over myself and my family for a second, there. 

Can't have that. 

So, I guess the moral of the story is be careful what you watch, even accidentally, because it all affects your outlook. 
I did find some more positive stuff, too, but boy it takes a lot of that to suck the venom out of the bad stuff you get hit with. Especially when all of this is new and scary. 

Friday, May 12, 2017

Reviewing Reviewing

To talk about reviewing for a second...

I was listening on the radio to people and experts arguing back and forth about the new sound of Linkin Park, and not just whether or not they liked it, but whether or not the band who changed several genres of music had a right to change things up now when so many loved the old, familiar noise. 

And I remembered a similar conversation that happened when Anne Rice began writing on religion. And when J.K. Rowling wrote adult fiction. (But not so much when the Red Hot Chili Peppers kept changing...maybe we expected that evolution since they'd done that with every album??) 

The truth is no artist has any obligation to do the things you like, or do them repeatedly. 

And, who the heck wants art like that, anyway? The on-demand-because-it-sells isn't ever going to be authentic. Or innovative enough to get us to love it like we loved the past things. 

I find people get very set, and very emotional, over nostalgia. And that is part of what dictates to how we react to the new, so it's important to keep in mind that things change, and they have a right to. 

Also, when reviewing, try to keep in mind what the target audience is and whether or not you fall into that. When you dislike something, bring the detailed reasons to the table so that you can figure out who this would better fit, and why. That, to me, is why we are reviewers. We're helping people discover the new things that would suit them. 

If you find yourself too eager to tear something someone else has created apart, I'm not sure you should be in the realm of critiquing or reviewing. I don't think you belong here. 

It helps to have been on the other side of whatever art form you are reviewing, but I think just careful consideration of "was this actually meant for me?" and "who would be looking for this right now" works. 

You're allowed to dislike whatever you want. 

You totally are. 

But the end goal of sharing your thoughts as a critic or reviewer should be something more altruistic than knocking someone down or needing a creator to stick to the familiar for personal taste preferences. The world doesn't need more "gatekeepers". We need more new. More fearless. 

A Memory, A Reminder...

There are creatures walking around among us whose souls are so empty that they attempt to eat away their own children. 

There, I reminded you of that. 

And, having done that, I think days like Mother's Day are really out of place with the real world, and even the creator of it tried to wipe it away. I'm thankful my children's school doesn't force them to celebrate because all I can think of is how the kids who don't have mothers or functional mothers feel. What a nice reminder that must be. 

It's sort of like Valentine's Day. It's really cute, but that is really all it is. 

On days like this, I remember that who you are related to is a coincidence.  A family is who loves and cares for you. 

Back when I was newly in college: tired, kinda of scared, awkward, and for some reason still awake well past eleven in the evening at my best friend's house. Being smarter, my friend had gone to bed when she should. I remember just sitting there in the kitchen in these retro cushioned chairs at a table that belonged in a diner. My best friend's mom, who was still up also, just starts popping open Tupperware containers of food. 

Because she knows I haven't eaten in a long time. She knows even when I don't tell her. And I kind of want to cry, and all I can remember is that I don't want to go back home.  

Everything about her is warm. Her skin color, and her dark hair and eyes, and her loud voice. She sort of paces and then sits down and tells me she understands completely why I'm hurting. She's seen it, she's lived it. And that was probably the first time I knew someone totally saw me. Saw the things I couldn't talk about. She'd always been inviting and protective of me, but I had no idea that she saw what I was dealing with and running from without having to be told. She sat down with me, and I ate. I'm sure she was tired and wanted to be in bed. But that was love. That was what love was like. 

Because of my best friend and her family I had the courage to talk to my future husband. They threw my baby shower. They did stuff for my graduation. They helped us settle in when moving after getting married. And they didn't have to do any of it. Ever. It was a choice. But I will never forget the night she told me just that she SAW me. 

My best friend's mom wasn't perfect. You don't have to be perfect. For the love of everything, no day you have as a mom will be anywhere close to perfect. That's the scariest part about parenting. You will screw up. And you'll screw up on a least a few bigs things. 

But, perfect isn't what it takes to be good. That's a different thing entirely. 

So celebrate Mother's Day if that was something you were lucky enough to have, and celebrate it on the days where it doesn't get a holiday, too. Not all of us will be born into it, so help your friends who weren't, because they need it. This kind of love is important. That's why it gets a flimsy holiday. That's why a million stories and poems were based on it. 

For me, it's also a reminder to be the best mother I can be. And to apologize when I can't be everything my kids deserve. And to keep learning how to be better, so one day they can look to me the way I looked to the woman who didn't have any blood ties to me but acted like a mother. 

Thursday, May 11, 2017

Getting Back Some Hope.

I was really worried going into the local lung center. I had no idea what to expect, but meeting new medical professionals I am always worried.

The first thing I noticed in the office was a big quilt, and on it, instead of the warm grandma-looking things you normally find, were 3D dark spiders and snakes and lizards. So puffy, and with embroidered bright eyes of all colors. Everywhere else on the wall were written reminders to do as much good as you can. And at that point, I figured I was probably in the right place. No medical professional that sucks keeps 1. a quilt like that in the waiting room or 2. that many reminders to be a good human being. 

And I was right. my pulmonologist is as well loved as my cardiologist, they are local celebrities in that right and for good reason. He listened, and we made a plan to do all of the testing available in hopes of shaking off the primary pulmonary hypertension diagnosis. 

Because, as I've said, if you have to invite PH to a party, primary is one of the ones you don't want showing up. The sleep apnea test was negative, but they might try that again as well. Just to be sure. And first the round of blood tests for genetic disorders, the scan to find any shady clots that could cause this, and the catheter they run into the right side of the heart to measure pressures. That one kind of scares me.

It will be my cardiologist handling it, and I should just get a local anesthetic, but I have heard some horror stories already and just am not looking forward to that at all.  But it's still the gold standard for measuring that. 

It sounded pretty similar to what they offer for some SVT sufferers. They break up the wiring in the heart causing the attacks by burning or freezing the pathways. Only this will just be a measurement, so it should be even less invasive. 

The idea of anyone running a wire into your veins and going in through your heart while you are hanging out awake, though...

That's going to be rough. 

But the idea that maybe this isn't the bad ass form of PH, and that even if it is, this MD has a plan, that made me feel less hopeless. My pulmonologist gave me a sense of security and upbeat thinking that I have found really hard to come by recently. And I can't ever thank him or the people at his practice enough for that. 

When you get bad medical news, it sort of feels like the world starts sinking in around you. 

Maybe I don't get lucky enough to outrun the diagnosis I was left with, but even if I don't, I have some of the best medical professionals on my side. 

And they'll help me deal with it. 

I managed not to try to squish the big puffy spiders and snakes and stuff on the quilt this first visit, but no promises for next time. 

Monday, May 8, 2017

Tachy Coffee Habits

It's weird to have something that helps you so much in daily life but also screws with your health. Okay, that's probably not that weird. 

For those of us with heart problems, specifically tachycardia, the much worshiped substance of caffeine poses a problem. Speeding up an already spastic heart is generally a bad idea. 

Coffee has become one of those things I have to use to actually live my life. The medication used for things like SVT can make you tired. And life can make you tired. And in combination I have found it drags me to the ground. The caffeine boost gives me a jump start at times when I'd normally need a nap just to function. 

I've had some MDs say just take the nap, but how many parents can do that? Not to mention sleeping before bed messes up my schedule so that I can not fall asleep and rise early the next day. 

Caffeine can also help with overall moods, so that's nice also. 

But, today, with everyone in my house taking turns getting really sick, I drank an iced coffee. And forgot to eat. Which means I didn't take my SVT medication in time. Which means I almost passed out. 

I have several friends with heart problems who have entirely cut out coffee, chocolate, all of it as soon as they found out it was a trigger. 

I know it is one of mine. 

I also know I have to function. Coffee helps me do that. 

So, here are the rules for my own tachy coffee drinking...

1. Do not to have more than one serving once per day. It's just too much to handle. Watch things with hidden caffeine like chocolate, too.

2. Drink a water at the same time to avoid dehydrating.

3. Take the morning dose of my meds with at least some food or a small snack before touching coffee. Most meds to treat things like SVT need food to be absorbed properly. This one I struggle with. It's hard to fight the urge for a fast wake-up, but worth it. I'm still dealing with feeling bad from not doing this before I had my coffee today. 

Always if you have any health problems talk to your MD about your diet, and your caffeine. Always. Do not use anything I say ever as medical advice. Or anything online. Only your MD can help you with this.

I think those of us with heart stuff can find ways to get stuff done or enjoy certain things, but it will be different than everyone else, so it takes some professional input.

Sunday, May 7, 2017

Online Grocery Shopping and Making Life Easier.

When the idea of ordering groceries online started really gaining momentum I heard the same thing over and over again: That it was another excuse for people to be lazy. 

Apparently, your level of productivity in life can be measured by you picking out your own almond milk. 

All joking aside, if this is your line of thinking, then I need you to take a moment to yank your head out of the darkness of your butt just long enough to realize not every single person in this world is living your experiences or has access to the nice things that you do-like extra time, energy, or support. 

Walmart has pioneered it in my local area, offering covered pick-up areas, their massive store variety for online ordering, and wonderful, fast service. It sort of freaked me out the first time I tried it, but I had to face that between MD appointments and things for the kids I had no time to run our weekly huge grocery trip. It was out of necessity. I'm generally a picky shopper, so the idea of someone choosing my food for me or shopping my list was pretty foreign. 

However, after talking to Walmart about how they ran the trips-things like not keeping anything cold out for longer than fifteen minutes, a feat I can't even manage when I plan the sections of dry pantry goods first, I felt better. And they have always been nice and concise with every single order. It also helps me because I'm always trying to stay under a budget number-ordering online means you can't possibly mess that up. 

For me, it was and has been a lifesaver. I can get what I need for home cooked meals without hurting myself to do it. 

I'm not sure people understand how important that is. How important it is for people who are chronically ill, or who have kids who are. How important it is for those who don't have time or headspace to get everything they need. 

This service changes the quality of life. 

And how wonderful is that? 

Man, we get a lot of Mom's Best...

If you've needed something like this but have been scared to try it, please don't be. You may not be a Walmart shopper, and I didn't go there often when I had to physically walk the store, but more and more grocery chains are picking up the idea of running the orders with no additional fee-Kroger and HEB in some locations are trying it. You probably will soon have your pick of where to shop that offers all of this. 

Don't let anyone lucky enough to have all the resources to shop for themselves and their family make you feel guilty for doing this, either. There are so many ways to be a great member of society, and feeling superior about picking your damn peanut butter off the shelf on your own is not one of them. 

Saturday, May 6, 2017

What Do You Do With It?

It was PH day yesterday. And oddly enough I got my call and appointment at the lung center to start more testing and treatments. 

And I was reminded, with the average survival rate listed as three years, how dangerous this is. 

Connecting with other people with PH has helped. Some have the same diagnosis and have been around from anywhere from 7 to 50 years with it. The trouble with a rare disease is that it's rare. There might not be enough data, or certain treatments weren't available at the time, or any number of things lacking that contribute to not being able to tell you what to expect. Right now my paperwork reads as primary. Primary, or Pulmonary arterial hypertension, is a monster I didn't expect. 

Sometimes you continue on each day, each week, and try not to think about it-any of it. 

But, on bad days, all you remember is the three years. You move in slow motion, trying to memorize your child's smile in the morning, or how to feels to hold them while watching television at night. And I think three years is not enough for this. To have climbed out of the dark hell I was born into and finally have the life I always wanted-for just three more years? 

What do people do with terminal diagnosis? People have to face them all the time from any number of things, so what do you do with it? 

Do you take a big vacation? Finish your books? Just spend quiet time with your family? What do you do with that number? 

We're so absorbed as humans that we forget things die, that we die. All the time. We're not special. We're not protected. And we will die. 

I hadn't really dreamed I'd be looking at that this soon. But, then again, maybe I did. I lived the way someone short of time lives. Met my one love before twenty, had my children before thirty, I was running to stay ahead of something. I just didn't know what it was yet. And now I plan my days wondering what happens when I'm gone and can't do these things anymore for the people I love the most. That's what hurts. 

Some days are positive. Some days you agree with Neil deGrasse Tyson's speech on being unafraid of the unknown and getting something worthwhile done while you're still breathing. And some days all you see is that number, your remaining life, and the way it is peeling down too fast to zero. 

I imagine it gets easier. That you get more information or more support and it gets easier. That the reality of it gets more real and less bizarre, and you stop seeing the number anymore.