Monday, September 18, 2017

The Waiting Game with Pulmonary Hypertension.

Anyone who has had a run in with an illness that required testing can tell you about the waiting game. 

It's that time period that feels like a million years for every week. 

It's between you and getting the help you need. 

And it's hell. 

And that's where I'm at with it. Waiting. For another week to finally get my rotation into the center of excellence for PH care. The hurricane delayed things we shouldn't have waited on by another solid month.

It's harder to breathe now. Harder still to get anything noteworthy done. 

When you sleep, which is difficult when you feel like you've inhaled a bowl full of fiberglass, you wake up fighting for your breath. Sometimes the pain is more like a boot through your chest, but it's always there to remind you that, hey, your body is trying to kill itself. 

I'd been unnerved by getting a right heart cath done, but now I just want everything to hurry. I want to be done with it. I want to be in the month or so of new treatments when finally I can feel better, feel more like me. 

One week for answers. One week for help. 

I was told the right heart cath may be done on an emergency basis, and sometimes if your lung pressure is too high, you'll be kept at the hospital. Don't get me wrong, those things are still heartbreaking. And still a little scary. 

But I've never been more ready to fight to get better.

And "the waiting game" can officially kiss my ass. 

Tips for staying sane while playing "the waiting game"...

1. If you can avoid having to do it, fucking avoid it. It might mean a different hospital, but if they can offer you decent treatment, take the one without a waiting list. Many times that won't be the case, and the rarer the disease or the more rural your area, the more it just isn't possible. But, if you get a choice of two good facilities...

2. The time between you and getting the medical help you need should be as happy and as calm as possible. Anyone who can't help but be an asshole needs to disappear (generally I recommend that as a rule of thumb anyway, but especially right now). 

3. Watch all the things you haven't had time to watch. Eat like you need to but don't be afraid to get the healthy take-out or prepped meals. Have help with the housework. Many of us need permission to take downtime. Take it now if you are at all able to. It's embarrassing and it sucks, but let other people help. 

4. Spend time with the people you love. It's hard when you feel terrible. But it might be the only thing that helps. You might not be able to do big outings for a while-stick to the small stuff. 

5. Connect with other people who've been down your road. It helps to know it's possible to get through all of this.

6. And, most importantly, don't give up fighting. This might be a crummy portion of this journey, but it's truly just the beginning. There are worse and darker days ahead, but there are so many better ones, too. And you can face them both. 

All there is to do now

 is wait. 

Giving credit to the photographer who supplied the image for my drawing-

Friday, September 8, 2017

Matching Glass Sets for Horror Fans: A Review of "Quinsey Wolfe's Glass Vault" and "The Bride of Glass" by Candace Robinson.

It's not very often that I would call a horror book fun. It's just often hard to combine the two in a successful way. But Candance can do that, and she did not once, but twice. 

If you find yourself nostalgic for scares combined with your favorite story book characters, "Glass Vault" was written for you. It's a kind of giddy fun like a Tim Burton film, but with a far darker edge, and a lot more blood and guts. All of the main characters are barely adults, and I kind of find myself wishing this book had existed when I was that age. 

The second novel, fairly recently released, "The Bride of Glass" I think is a revealing of the portrait that was beginning to be painted in the previous book. You get a lot of the why's filled in here for each character, and a lot of different experiences, but with the same dark fairy tale style served up in the predecessor, if a bit more on the serious side as the stakes become higher in a worldwide sense. Both are fun rides, but not intended to be standalone, so grab the first book and read in order. 

My favorite parts of these books have to be the character creations from the Glass Vault. All of them are so inventive. I mean, where else are you going to be in danger of being attacked by a mermaid that's rotting to pieces? 

Characters too fun not to create fan art. 

Seriously, supporters of horror shouldn't pass these up. You can get the first book here, and the second here

Wednesday, September 6, 2017

The Narrative That Gets Erased When We Compare.

One of the biggest "screw-you's" of pulmonary hypertension might be that people don't know what it is. It's rare so chances are they don't know anyone with it (except you). So explaining what's going on with your body on repeat is just a constant thing both to medical providers who aren't on the ground level of your care team and to people who just want to know what's going on. 

I recently had an instructor tell me she knew exactly what I was feeling because she was a breast cancer survivor. 

With no intention of offending; no, you and I are not the same. 

And you, while your brush with death is no less real, don't understand automatically what everyone else in the terminal illness camp is facing, given the wide variability of that. 

With this disease, there is little hope of outrunning your monster. "Beating it" is impossible (at this time). 
Most of us are already trapped in the same building with our's, and we're frantically looking for weapons or dark places to hide-while knowing, knowing for sure THAT hope will do nothing. No help will arrive. 

There is no cure aside from a new pair of lungs and, if you have my type, a new heart to match. 

Drugs are a slow-down, a management of keeping the thing shutting down your body to a minimum. We get to be upbeat but in a different manner. Beating PH won't be a thing in our lifetimes, but getting to live a longer life while fighting it might be. The research is getting stronger every year, the treatments are too. 

And I couldn't possibly have any concept of what cancer warriors go through. Some PH treatments aren't fun, but are nothing in comparison to the twin hells of chemo and radiation. And some cancers have a much better survivability rating than others. 

The truth is fucking none of us get to compare our experiences like that. I don't know what you're feeling because heart and lung problems are the monsters that I know. 

We get to unite on the ground that all terminal illnesses suck. They just suck. Robbers of life, vitality, and meaning and deliverers of intense suffering. 

They are unfair, in the worst sense of the word. 

But I won't pretend to understand what it is everyone else faces, I wish they wouldn't do the same. 

As for me, there may not be a cure for PH, but I intend to stare that number on my life expectancy into the damn ground and then some. 

That's the other thing we get to unite on, I guess. The tenacity to fight back. 

Monday, September 4, 2017

"Dearie: The Remarkable Life of Julia Child" by Bob Spitz Review

I had no damn idea how to cook as a young woman, and even eventually as a wife and first-time mother. 

I didn't have the family needed to show me those things. Those of us who don't have exposure to that are at a serious disadvantage in the kitchen. 

I learned a lot from my husband, who completely was at home while over the stove or the grill. I even had to learn from him how to shop for groceries! Yeah, I was that hopeless. And the rest? I learned from PBS. 

I kind of wish I was kidding, but I'm not. It was only then that I learned who Julia Child was, mostly through one of the most informative and entertaining segments I'd ever seen on food, Julia & Jacques: Cooking At Home. It focused quite a bit on technique and covered a wide variety of foods.

I was lucky to be able to view all kinds of different cooking shows from all over the world. I'm not a chef now, or even a talented home cook, but I think I have done alright thanks to the enormous amount of cooking information we have at our fingertips. The Food Network, cook books for everything you can imagine, food bloggers. All of it is amazing.

And one of the most influential cooks that ever gave us a recipe is Julia Child,  and she is still a giant, even among the vast information on how to prepare and enjoy food we have now.

"Dearie" is a long read, it's a long comprehensive work about the inner workings of Julia's life.

The beginning of it, reading that Julia was a California rich girl, kind of phased me. While I'm not sure she would have been able to be who she was without that financial comfort, you always kind of want to believe your heroes start like everyone else.

Spoiler-she didn't.

You get to read about her antics as a teenager, and her listlessness-the kind of listlessness that sets in for young women when we don't know WHAT THE HELL we are supposed to be doing with our lives, and her early life in government work that placed her as far away as India (but into the reach of Paul Child).

The most fascinating parts of the book are definitely the early years of assembling "Mastering" and her first television appearances. This book, as it says, does cover her life. It details things I didn't hear about, like her support of Planned Parenthood. Her support of new and young chefs as the culinary landscape here in American changed.

And it covers the sadder things, like Paul's commitment into a home. Then even sadder things, like friends and lovers dying as they tend to do as one gets into a certain age bracket. These parts of the book are no less interesting. But they will break your heart.

I definitely recommend the "My Life in France" book and "The French Chef in America". Those are up close, intimate accounts.

This, on the other hand, is exactly what it says it is. A sweeping story of the life of someone who changed the world for cooking, and for women. It's detailed in a way that something a little removed can only be, and that's what makes it a good read. It isn't where I would start as far as books on Julia go, but it should be on the reading list for fans.

I'll stop reviewing Julia related books now, I swear. Probably. 

But if I can get my hands on Bob Ross biographies,  I will never, ever shut up. 

Wednesday, August 30, 2017

Diary of a Flooded Town part II: It's Over.

The rain finally stopped.

It felt like it never would. And every damn inch it added to the ground was maddening. Our cities were drowning, and some are still struggling against overflow even as the skies are quiet. 

We've all found each other, and, even if briefly, gone over what we lost. My loved ones here and I have been incredibly lucky. 

The surreal experience of messaging my best friend while a tornado danced with her house and near her family left me shaken. 

I didn't suffer any fainting or bouts with SVT or low oxygen during the storm, and my husband's work was good about making sure he could be here in the worst of it in case I went down, and the kids needed one of us. The entirety of the disaster does make me consider moving nearer to my cousin or best friend. My neighbors have helped me on occasion, but it isn't even close to having loved ones who always know what is going on. 

There are so many displaced, and hurt. People who have lost everything. And any of us could have been on that side of it. Or, worse. We lost an officer in Houston,  and some rescuers can't be found. Nobody is even sure what the death count is yet, and it won't be reliable until the flood waters are gone. 

I don't think anything here will ever be the same. 

We're already jumpy. The next, predictively small, rain coming on us for Labor Day will scare us all and that's okay. Those of us on the Texas coast will all be watching the newest baby of a storm to see where it goes. 

Food isn't plentiful yet. There are lines at grocery stores who are open, sometimes with timers for control. 

I have no idea if The Lung Center survived or when they will be taking patients again. 

I'd been scheduled just the 28th of August, an appointment to discuss test results, expectations, and rescue methods from attacks before surgery. Everyone is just waiting. We don't know what's left. Or what to expect. 

I'm not even sure if our school will be operational yet, though it won't be until next week that any educational facilities here try to open their doors. The kids were a week, just a week, into classes when this began. 

The first stories I saw on NPR were about our cities. Here is one on how you can help Houston. 

The catastrophe is over, but the unfolding of what it has done has just started for many. 

The obscenely lucky, like myself and my family, are searching for normal. Hot food not mass-prepped to be able to fit in an icebox, the ability to walk down the street, or buy bread and eggs. 

And we'll be looking for ways to help, as the obscenely lucky must do. 

Sunday, August 27, 2017

Diary of a Flooded Town

If you've seen or read any news, you know about Harvey. You know about the serious damage and danger that sudden sonofabitch brought here to the Texas coastline. 

We were lucky, we missed a direct hit here in Houston. I can't imagine what the folks who were in the path felt. But right now we're getting the dirty rain bands one after another after another. There are houses on no existing floodplain and on high ground in which water nears their door, our's included. 

This is not the first time I have seen high flooding. 

This is the first time in my life I have seen flash flooding. 

The water moved through our neighborhood like rapids, with white crests every few seconds and rain that drove sideways. It created a cloud of mist, the mailbox now barely visible. We've hours to go in a long night of this. And possibly days before the rain stops altogether. 

This morning was so quiet, that this just seemed a sudden nightmare. 

The local wildlife doesn't appreciate this bullshit either.

On the news, it flashes in red text lines that our body count here is already at least one. Just due to the water. The fast, deep, unwelcome water here in our hometown that refuses to leave. 

We have food and water. But for a week would be stretching it. It would be peanut butter for breakfast and walnuts and tomatoes for dinner stretching it. I worry about the kids. I worry about my husband. I try not to let them know I'm worried about them. 

Stepping on wet chalk to ease the boredom.

My husband, a first responder, returns to work tomorrow and might not leave again until the threat is over. I'm not sure our vehicles will work. We can't hide them from the water, either. 

I can't tell you what is running through my head now, with having suffered fainting even in the last few weeks with PH, but I have hanging up our evacuation bag, and a large walking stick waiting for us in the garage. Because there is a chance we'll be fleeing this flood, alone, in the future.

I can pretend my wrist bp monitor is a PIP BOY 3000, right? 

And like so many other times in my life, I HAVE to believe I can handle it. 

I have to. 

There's a constant stream of texts and emails in the constant streams of rain, we're all trying to watch out for each other, separated by miles or more.  We're all awake. We're all listening for the next alert, or worse yet, the siren. 

But, right now, we have power. If we keep it through the morning, it may be our's through the storms. I don't know how likely it is, but I have to be hopeful. 

I have to. 

I'd optimistically packed away my writing things, to know where my little word processor was. I had this passing fancy that a storm would be a good thing to write in. But in life, we end up against times that take so much from us that dreaming and living in the writing world is physically and mentally impossible. I went through one of those, a long one, after the loss of my last baby and the worry over my new one. Sometimes life takes too much. Steals it from you even when you have dangerously nothing. 

Writer's Block is not much of a thing for me personally. If I have the headspace, that world belongs to me. Writer's overwhelm is so much of a thing that I'm surprised we don't have a proper name for it. 

Stay safe, and if you are safe, spare thoughts and prayers for everyone affected by this behemoth hurricane turned- everlasting-bastard in Texas. 

Saturday, August 19, 2017

A Review of "Cleaving: A Story of Marriage, Meat, and Obsession", (or Julie's Other Book).

I'm studying a little about butchery for my current novel project. a fantasy community which hosts, yearly, a butchery kind of festival. 

That's not even the dark part of the book, I swear. 

A lot of my research has come from people like Christopher Kimball, who likes to talk about the history of certain food practices. When someone mentioned that A. Julie from the Julie/Julia Project had A SECOND BOOK and B. That it dealt with mostly the art and practice of learning to butcher animals, I was really excited.

And then I read the other reviews. 

And I was almost upset. I'd read Julie Powell's first book-the modern walkthrough of Julia Child's "Mastering the Art of French Cooking". I also adore the film. 

I felt like, based on the warnings, I was going to read this and the magic and heart that ran through the first book would just straight up die. 

But I had to read it. I had to. 

And, you know what? I'm glad I did. 

Here are some talking points though: Some of the things Julie does are downright despicable. She cheats on her husband, repeatedly, and in a way that suggests he is, in fact, a non-person to her; not warranting the truth of any situation. It's horrible to read. She also stalks the side-lover when he loses interest. And casually addresses that as if it were not the terrible, scary thing to do to another human that it is. 

You could tear most of those pages out of the book and burn them and what you'd be left with is remarkably good. 

Burnt out on broken shards of life, Julie starts chasing a butcher's apprenticeship. Which apparently isn't easy to find anymore, even in and around NY. 

In that aspect of her life, she is relatable, especially to women honing a craft. 

That is more like the Julie we know from the first book. 

She's nervous and rehearsing what to say as she goes from meat shop to meat shop asking to be taken into learning the trade, she's terrified but resolved at getting better at her craft every single day in a way that is brave and admirable. 

The ins and outs of cutting up a dead animal are described pretty well. I've mentioned before that as a family we rarely eat meat, but this doesn't stop me from appreciating the work that goes into what these professionals deal with-and it's a lot of work. Possibly dangerous, always rough, and requiring so much study and know-how that it's daunting to even think about. Julie's entrance into that world is worth the parts of the book that might make you really dislike her.

She even travels to observe the dealings of meat in other countries, and those chapters are less hands on, but not less interesting. That's coming from an anthropology fan, so take that for what you will. 

So the magic got tossed in the dirt. And left to sit there for awhile, but it's STILL there in this book. 

And then there is the discussion that the author doesn't have to make us like her, or accept her decisions as not personality-disordered or anything...

Writers just don't owe us that. 

They do owe us good writing, and that's here.

So, I'd recommend this to fans of Julie's other book, I really would.