Pulmonary Hypertension (PH)

Today is Pulmonary Hypertension Blogging Awareness Day. Sorry if this isn't a detailed enough entry, but I thought I just had to be 'aware' this month, not blog about it.

Trust me, though, I am always aware of PH. My father has it. Not only does he have it, he has it secondary to sarcoidosis, which is a rare complication of a rare disease. I always knew he was exceptional, but he should have limited himself in this regard.

What is pulmonary hypertension? It is not the 'regular' hypertension you see in the drug commercials on TV, and it can't be measured by an arm cuff. Basically, pulmonary arterial hypertension is high blood pressure in the artery that takes the blood from your heart to your lungs... you know, where it gets the oxygen your body needs. The general cause? Narrowing/blockage of that artery or in the blood vessels of the lungs. Your body WANTS that oxygen, it NEEDS it, but the pipelines are blocked. The heart pushes harder. The blood backs up and the pressure increases. Honestly, it's easier to understand if you think of it as a plumbing problem.

Consequences? Shortness of breath and feeling faint are common symptoms. You're trying to get more oxygen into your body, but the problem is really that the blood has slowed to a trickle. Your heart may try to beat its way out of your chest or you could develop chest pain at even minor exertion. Taking oxygen helps. Dad has one of those little rolly oxygen concentrators now.

Plus, EVERYTHING tires you out. You don't have that much oxygen to work with, so your energy burns out quickly. This sucks, especially if you're impatient, a workaholic, or a general Type A person. What sucks even more? Some people with PH need medication delivered directly into their hearts. They carry a pump on their person at all times, and it has a tube that literally goes INTO your body and enters your heart! What sucks the most? Eventually, the high blood pressure will damage your heart.

Dad was diagnosed with sarcoidosis since I was 16. I'd like to say that only five years had passed since then, but you've already seen my picture. At the time, they told him that he probably had 10 years to live. He made liars of them; he's still around. In 2005, he was diagnosed with PH. The pulmonologist wasn't much help: shortness of breath? That's to be expected, considering the number of granulomas (my father calls them 'granolas') in your lungs. Come back in a year. If it's worse, we'll try prednisone again.

Bull. This wasn't the shortness of breath Dad was used to. He went to a cardiologist. The cardiologist ran various tests, and then proposed a stress test. A friend's father had died of a heart attack brought on by a stress test, so I wasn't too keen on the idea, but Dad did it. Walking? He'd done that all his life, fat or thin. Soon into the test, the cardiologist stopped him. He said he wouldn't have believed it if he hadn't seen it. My father had PH. The doc had only read about it.

Most docs don't know a lot about pulmonary arterial hypertension because it's so rare. The cardiologist didn't know much. It was a pulmonary problem, so he referred Dad back to the pulmonologist. This was the same fellow who had ignored the rapid heartbeats, the chest pain, and the drowning feeling. Dad wasn't going to go back to that 'idiot'. Since I work in CME, he thought I might be able to find better information, or at least a better pulmonologist.

My father doesn't really spend a lot of time looking up his ailments. That would involve thinking about the ailments, which causes him stress. The regular world offers us enough of that. For me, though, research eases stress, even when a quick cure isn't available. I Googled medical sites like WebMD and MayoClinic.com, and learned what I could about the subject. Eventually, I found the PH Association webpage. This is a support group primarily for PH patients and their families, but they also work with healthcare professionals to provide physician education on this rare disorder.

The site is great! It has understandable information about PH and its treatment, contact information for support groups across the country, news on PH research, and reading material you can order if you need more in-depth info (for example, for people who developed PH after taking Fen-Phen). They also had information on PH specialists, and I found one my father could see.

Since that time, which was scary as hell for everyone, my father's condition seems to have stabilized. He uses oxygen, but doesn't require a Flolan pump as of this writing. The current life expectancy for PH after diagnosis is five to fifteen years; Dad is chugging along at four. Let's hope he makes liars of the doctors again.

For more information, check out the PH Association's webpage.

Monkey Dancing at Bouchercon

The first night at Bouchercon, we went to the Thursday Evening Extravaganza at Gameworks. All the games were free, plus there was music with a live D.J.

Well, I'm half Greek. You may not know this, but Greeks are compulsive dancers. Once Austin Camacho and his squeeze took the floor, I quickly followed. The evidence is below and, mercifully, quite dark. Just look for the moving stripes.

NaNoWriMo is Nearly Upon Us!

(Don't know what National Novel Writing Month is? Click on the Web badge to learn more!)

Once again, I teeter on the edge of the cliff. Last year, I entered NaNo with a good story idea and a rudimentary outline (unusual as a SEG starting maneuver). I'd even 'interviewed' two different characters to take the lead role.

It sounded good in theory, but in practice, I wrote a very small amount. I didn't even break 7500 words. I haven't even doubled that in the year since. To say that I was discouraged and disappointed in myself would be an understatement.

Here I am again, though, preparing to try another Nano with this story and these characters. Yes, it's scary. What do I have this year that I didn't have last year, besides more existential angst?

(Yes, this is a rhetorical question. I figure no one else reads this blog but me, so I might as well talk to myself).

Well, at Bouchercon (pics to follow one day), I got some encouragement. I took part in Hallie Ephron's plot-writing workshop, and she said she liked my story concept. No, I am not going to reveal it here, since we have already established that I am talking to myself, and I already know what the idea is.

I've had another year to work on backstory. Unlike my vampires, who cavorted around in my head for years before I began writing about them, I entered NaNo last year with an entirely new cast and story setting. I'm still getting to know these people.

I also got some hints and advice from people at Bouchercon. Liz Zelvin helped me figure out some questions I should be asking about my character, and several of the panels addressed my story concerns. I also had a small epiphany or two, since my subconscious spent some time stewing on the subject.

These are the positives I must remind myself about as November approaches. I will need them to get past the mental blank-out I experience when I open my manuscript.

Good fortune with your writing!

My NaNoWriMo Confession

My tale of woe: I use National Novel Writing Month to 'grow' whatever novel I'm already working on. The frenetic pace, the write-ins, and the 'shut off your inner critic' approach help a lot. Yes, I know that's against the rules, and I never claim 'victory' no matter how many words I've written unless I actually STARTED the book during NaNo.

The latter case only happened once, and I didn't win that year. Hell, I still haven't 'won' with it, and that's part of why I haven't posted here in a long time. I liked my first book, my friends liked it, some of my not-so-close friends liked it. I couldn't sell it to an agent, though. So, I came up with a NEW idea, new characters, new plot. I sat down during NaNo to work on it, and was totally blocked. It's not nearly as much fun as the first book was, and I use that term (fun) very loosely. This was when I identified a very important problem in my nature:

I'm lazy.

I view my time and effort as an investment. It's very, very hard for me to write fiction. It's like pulling teeth - the front ones, where all the nerves are. It seems like no matter how many shots the dentist gives you, you can always feel the pain. I have no problem stringing a couple of sentences together, but creating something out of nothing is a lot harder than typing words on a screen.

Writing and being unable to sell the product is a bad investment, in my -er- book. No matter how interesting and fun the character is to me, I just don't have that much lifetime left. It took me 3 years to complete my first book. I understand, from other authors, that about 7 books need to be published before the process really start paying for itself (unless you hit really big, natch). I must reiterate here that I AM LAZY. This means I'd really like to retire BEFORE I qualify for Medicare.

I could quit, I suppose, and stick with my day job. NOT writing, though, drives me nuts. Sometime in elementary school, I decided that I wanted to be a writer. That hasn't changed. NOT having a story in the works makes me feel useless and fills me with existential angst (Google it if you're that concerned). A palm reader once told me that I had a "finger with an agenda". Writing is that agenda.

If you have a suggestion for resolving this dilemma, go ahead and comment. Sympathy is also welcome (telling me I'm a whiner isn't going to be news). I wasn't expecting people out there to solve the problem for me, but I feel better for explaining it to you.

Write anyway. I plan to.

Greetings!

I've been away, but not sitting on my hands. Well, okay, SOME of the time I was sitting on my hands.

My new novel with new characters and a new angle: can we say writer's block? I knew you could. It's easier to write a story when you already know the people well. I'm still getting to know this group.

Short stories: I will probably have something in the next anthology coming out from my chapter of Sisters in Crime, but that's a bit down the road. However, I WILL have a story in the first-ever SinC Guppies anthology! My story was chosen out of a large number of submissions, so I feel very flattered. The Gups are looking for a publisher now.

In other news: I have lost nearly 70 pounds. I'm not where I want to be yet, but it's been at least 15 years since I was this slender.

I hear your wheels screeching now. Screw what she's writing, how did she lose that much weight? I did it through a combination of old school and new tech: I ate less, exercised more, and logged it all at SparkPeople.com.

Keep NaNo Going for Next Year!

Please donate to NaNoWriMo!

Even $10 can help keep National Novel Writing Month going till next year. The NaNo folks do so much more than host a web site for annual novelists; they provide NaN-based language arts curricula for young writers, even loaning out AlphaSmarts to classrooms without computers. During a time when the arts are being cut out of the schools, NNWM is helping develop new authors.

Last year, the NaNo hosts got the donations they needed and more. This year, everyone is short of money and the funds have not been forthcoming. Won't you lend a hand?

NaNoWriMo

National Novel Writing Month is upon us again.



As usual, I'm using it to kick-start my writing. This year, I started my new novel, which introduces a new character, a new city, and a very different plotline from my first novel. Writing has been slow, since I am still settling into the new characters and setting, but I have worked on it steadily through the month.