Tuesday, December 16, 2014

On the Couch

I've been sleeping on the couch for five days. I don't recommend it. Except it does allow me to mostly sit up and not bother my husband with all the hacking and nebulizing that goes on all night long.

Kiddo is sick now too. Which is alarming as one of her classmates just passed away due to asthma complications. So very sad. I've been very vigilant about her inhalers and so far, so good. It's not hitting her as hard as it has me (which probably has more to do with luck than any meds I've given her. Asthma that plays for keeps doesn't really care what you throw at it in my experience).

I didn't think she was going to get it at all. For a week, she was like "I don't feel good" followed by "Oh I'm fine" and then boom, the hammer fell.

We're hanging in there. I'm going to try not taking prednisone tomorrow and see how that goes. Yesterday, I wasn't so sure, but since then the coughing has become much looser and more productive, breaking gunk up instead of winding it tighter. Nights are still pretty bad with lots of asthma regression, but days show signs of hope.

I just wish I felt better. The malaise with this bug is as bad as adrenal insufficiency. My kiddo is a lump and I'm not much better.

Saturday, December 13, 2014

Two Steps Back

Adding in more steroids. Crazy. Yesterday felt more like the tail end of things than the start of the next big step down. I thought I would be pretty much back to normal after a good night's sleep. Might not even need the full five day burst.

Ha.

So I'm now up to the full dose 40mg of steroids. Taking every inhaler I own. Round the clock nebulizer treatments. I've used up all the tools in my tool box.

I got nothing else.

Hope my body figures this out.

Friday, December 12, 2014

Super Sick, Super Fast

Well, this has been a whirlwind. The second this bug hit me, it went straight for my lungs. By 12 hours, the asthma was serioulsy flared, but my awareness lagged behind a bit. It wasn't until I had to park a billion miles away from an entrance and walk in that I realized I wasn't doing so well. Breathing and walking weren't compatible.

By 24 hours I was beginning to realize I was in trouble. It was either take steroids or go to the ER. And what ER wants  to see me if I hadn't even started steroids? So I took the steroids and every thing else I could find in my medicine cabinet. Lots of pulmicort and 20 mg of steroids later, it's not as acute. Still bad, but I don't see the ER in my future. I hope.

Yes 20 mg is a pretty low dose, but I can always take more. Steroids work pretty fast. I figured if I didn't see any relief in a few hours, I would take another 20mg, but thankfully, the lower dose is effective.

The new nebulizer should be here soon. I got that moving pretty quick.

I thought I would be devoting my day to scoring some Tamiflu as I think I may actually have the flu, but the fever broke early this morning and my main issue now seems to be asthma. It's probably too late for Tamiflu.

The bug that hit me like a nuclear bomb in 2010 was fast like this one. Very aggressive. Typically there's a lag between the time the bug manifests and when the asthma activates. This time, I got the one-two punch.

I don't think this will end up being as bad as 2010. I started all the steroids and asthma meds pretty quickly. In 2010 I played a lot of phone tag trying to get medicine. I wasn't stocked up like I am now.

Still, this is a serious flare. I'm completely wiped and there's enough fluid in my ears that I'm concerned about an infection starting up for next week.

I'm hoping to write today, but I've been up all night and am not even at 50%. I don't want to lose momentum on my book either. It's going very well and it's a story readers will like. So I'm hoping writing this will warm me up enough to take a stab at some fiction.

And tonight we have theater tickets for the Nutcracker. Somehow I will go out to dinner with my little family and sit through the theater performance. I seem to have lost some of my coping skills, though as I am not confident I'm really up for this. I used to suck it up a lot better. This time around, honestly, I just want to stay home and sleep. Or go to the theater in pajamas.

Thursday, December 11, 2014

Lack of Oxygen

This is my karma.

I ship my nebulizer to the other side of the country in an effort to keep my parent out of the hospital and promptly become sick.

I have a pulmo appointment soon and will request a new neb then. My unit is pretty old anyway. I guess in the interim I will make do with spacer delivered albuterol and pulmicort added to the Symbicort already in use.

To boot, I was just getting into a good groove going on the exercise, too. I cannot win. Like ever.

I also took a stab at making an appt with the pancreas specialists the GI doc recommended. This is in the system where I repeatedly have been unable to make an appt. This latest attempt was no different. Heavy call volume, please press 2 and we'll call you back....except option 2 malfunctioned.

Naturally.

I feel like my medical care is an SNL skit.

Also, I'm not breathing so well, so the stringing words together thing may be kind of loopy.

Oh and my parent is doing well. Bouncing back very fast, so fast, you would think they were 40 and I was 65. Gah. I'm glad they are recovering well, but it is depressing to see how much more resilient they are than I am. I don't bounce back and being younger seems to offer no advantage in my body.

Writing Update

I'm not sure I'll be a paid writer for much longer. The industry has continued to devolve in apocalyptic ways. My earnings are now back to what they were when I first published, back when no one knew my name and I had no idea how to market a book. If I can fall that low when I have fans, a strong marketing skill set and several popular books...well, it does not bode well.

The truth is, you can hit bestseller lists and have a fan base and still see everything you built disappear. There are no guarantees in this business.

I haven't decided what I'm going to do. A lot will depend on what actually happens in 2015. I can get by making less money (which the way things are going it will be a lot less) but I also have to make enough to cover expenses.

Most of the problem is Amazon's KU program, which has not been a boon to authors (or readers). It's complex, but basically Amazon favors KU books over all other books, so if you're not exclusive to Amazon (which KU requires) you're kind of SOL. And they cut royalties by about 30% (more in some cases, depending on the book price). So where I used to earn $2.10 per sale, with KU, it's $1.33 and declining.

If writers go with short stories or serial stories, they can make KU work for them at a 99 cent price point, but while I do  tend to write short, I'm not interested in being locked into 99 cents or in only writing short stories. There's a point at which writing becomes sweatshop labor, where I will work harder and harder for less and less. That's why I stopped pursing traditional publishing. I value my quality of life. If I'm going to work like a dog, the pay has to reflect that. Otherwise, I'll find something else to do.

Scammers are all over KU. I just saw a book titled 'All About A' that's in KU. If you look inside, all you see is AAAAAAAAaaaaaaaaaaaaaaaaaaaa. The whole book. That's it. And Amazon allows that to be sold and take up space on their site to compete with legitimate authors.

Meanwhile, none of the other platforms can compete with Amazon on sales volume (although with KU mucking things up royally, that may change shortly).

Further, there's a ton of saturation. Too many books. Too many writers when the number of readers has stayed the same.

And my genre may be weakening. That's my gut feeling. I could be wrong (I hope I am) but my sense is my genre isn't selling like it used to.

I would like to continue. I have more stories I want to tell, but writing may have to go back to being a hobby. I don't know.  Plus I have no idea what kind of job I want anymore.

Kiddo Update

She's really good at math. I think I've mentioned that, but I'm still stunned. Like really good at math. Like working out multiplication on her own. Wow.

And she's discovered legos. So I'm thinking she's going to be a math person. We'll see. I'm still crossing my fingers that she will find her love of reading, too.

I read over some things I wrote when she was a baby and the gifted stuff was so obvious even at such a young age. I was aware that she was ahead back then, but I didn't understand it. I still don't, but I'm learning.

She had the bug I have, but in her it was an hour long sore throat. For me, it's asthma central. Funny how that works.



Wednesday, November 26, 2014

ACA in Action

My parent is in the throes of a prolonged severe asthma episode. While they've had asthma for a while, this is their first bad flare. They don't have the arsenal that I do. No nebulizer. Hardly any meds and what little has been prescribed, the insurance company refuses to cover.

They finally got into a pulmonologist today who confirmed it's bad. My parent needs a nebulizer, but with the Tday holiday, has no way of getting one any time soon. The prescription has to go to the PCP and the insurance has to review it, a process, which for medications, has taken two weeks previously. (And they said no.)

The doctor is already concerned that my parent will need to be hospitalized.The inability to obtain the prescribed medication and medical equipment in a timely fashion makes it seem like a done deal.

I told my parent that they do not want to end up in the hospital if they can avoid it. I'm going to overnight my nebulizer on Friday (we already missed the last UPS truck today) as I'm pretty sure I'll be faster than the insurance company.  (I don't need it unless I'm in the middle of a flare, which I'm not.)

Meanwhile, I've urged my parent to put the word out and see if anyone can loan them a nebulizer for a few days. They need round the clock treatments if they're going to have a shot at avoiding more medical care. And steroids. And antibiotics. And everything else.

"Sit and do nothing," I advised. "You've got a four day weekend to rest and see if you can get ahead of this. If you feel worse, go straight to the ER."

"That's what the doctor told me."

"Good. Listen to them."

I was happy when the ACA passed. I recognized it was an imperfect bill, but I hoped it would lead to something better. However, right now, in practice, it is extremely flawed and serves profit before patients.

I realize some of the problem is the holiday and just bad timing, but my parent and I already know from previous experience that this particular ACA health plan denies claims as a general rule and their approval process is so convoluted and bloated, patients either give up or pay out-of-pocket (as my parent has done).  It feels like The Rainmaker by John Grisham. 'If we just say no long enough we're only out the ten bucks an hour we pay to the admins!'

The ACA serves as a money funnel to insurance companies, but not much of it is coming back to the patients.



Wednesday, November 5, 2014

The Longest Blog Post


I think I'm finally over the chaos wreaked by the food poisoning. It really aggravated the SOD for a while and I had some significant pancreatic type pain. Fortunately, the worst of the pain is always fleeting, something for which I am very grateful, but it is alarming nonetheless.

I also made things worse by eating gluten. Sometimes wheat hits me extra hard. I suspect ingesting it so soon after the food poisioning caught my system at an unusually weak moment. So that made me sick. Instant GI symptoms with a side of asthma. Fun.

I'm usually very good about avoiding wheat, but it sneaks into my food. Usually it's not a huge issue and I head off as much of the reaction as I can with Alpha Lipoic Acid, but every once in a while, gluten hits me like an apocalypse.

Anyway, my system was still in an uproar the day of a wedding we'd been invited to. If you've read any of my previous posts, you may recall I'd bought my daughter a fancy dress for the occasion. This wedding was a highly anticipated family event, but I was so sick that day, I wasn't sure I would make the reception. I barely made it home from the ceremony in one piece. My body purged every calorie I'd ever eaten in the history of food and then I passed out on the couch, utterly exhausted.

Fortunately, things improved by evening. I made it to the reception and was even able to eat for the first time that day. From there, we progressed right into dancing. Can I just say, how awesome it was to boogie without feeling all the energy drain from my body? Especially after feeling so awful most of the day! I did a solid hour straight and I wasn't tired. I had all the energy I needed. As in, there was no deficit. I love it when adrenal glands work!

The kiddo looked adorable in her dress and she boogied down with us like a pro. Several relatives came into town for the wedding and we just had a really fabulous time. Given how the day started though, I didn't think it would end so well! I'm glad I pushed through and didn't give up.

Off topic updates...

The kiddo.

Is fabulous. She's just going through an awesome phase right now. I'm so impressed with her. This kid practices her piano without complaining. She does her homework of her own free will and is generally a delight.

She's a whiz at math. The school told me she's ready to start third grade math. For reading, she's aced all their assessments so they need to administer more to figure out her  reading level.

We do still deal with some perfectionist melt downs. She did her math homework perfectly one night and then freaked about it afterwards, clearly anxious about the new concept. I ended up doing some extra exercises with her to reassure her that she knew what she was doing. How odd is that? She's got the math down, but her perfectionist streak doesn't let her see that. Gotta love perfectionism.

The teacher asked us to come up with a goal for her learning plan and I drew a blank. I can't think of anything more I would want her to do. She's doing so great, I don't want to mess it up with any extraneous expectations. (I wouldn't focus on the perfectionism because that's really a maturity and life experience issue. And we work on coping techniques all the time already. There's really nothing to add on the P front.)  

Writing.

Eh. Who knows? Every day is different. I'm scrambling, trying to figure out how I'll make any money this month. Plus, trying to get new work done. Writing is going so sloooooooooowly. OMG. Come on stories! Why can't you spill like water?

I was invited to another secret author group. *eyeroll* At least this one is better than the last one, full of powerhouse authors (i.e. names you probably know if you read a lot) who talk a good amount of shop.

The thing that struck me was how many people I knew in the new group who never thought to reach back and bring me up with them. These are people who've I helped and materially impacted their book sales for the better. As in, half their sales strategies are innovations I came up with.

I don't get it because my first thought when I get into a group like that is 'who can I include?'  Apparently, I am strange. And also chopped liver.

It's not just my network either. I see the same dynamic in other members of this group. I've been around long enough that I know some of the buddies and super friends and reciprocal networks pretty well. It's interesting who is in the new secret group and who wasn't invited.

Well, like I have said before, there are a lot of narcissists who are authors. Eh, screw 'em. I can't even say I'm surprised anymore.

I'm working on a new marketing concept and I'm excited because I think I finally have a list of authors I want to work with who I'm pretty sure aren't jerks. Crossing fingers it goes well.

Sunday, October 26, 2014

Degrees of Separation: Ebola Version

The theory goes that any one person is six degrees of separation from Kevin Bacon, right? Somehow we all know someone who knows someone that in six easy steps will lead to the Footloose alum.

Well, currently, I'm two degrees of separation from people with ebola.

The root cause of this is the poor policy and lack of appropriate and effective guidelines from the US government.

Containment was an afterthought.

I don't know what the US government was thinking or why they decided doing nothing was a good idea, but they screwed up. Big time.

Also, you quickly do not give a shit about how many people die from the flu each year when you actually know people under quarantine through no fault of their own. They did nothing wrong and are paying for our government's mistakes.

Further, the number of people in Africa predicted to die from ebola this year is about the same number of deaths the US sees from the flu. Ebola is quite capable of giving flu death stats a run for their money. Something, the US government is, apparently, committed to testing for themselves in a real world scenario.

Again, I ask, what was the point of the flu comparison the media has been blathering on and on about? It's like a pop science distraction. A 'Xanax-ian' propaganda that folds under critical assessment.

The other bug up my butt about ebola is the 1% is being ignored. A 21 day quarantine does NOT catch all ebola cases, just most of them. Something like 2-3% of cases won't manifest until the 30 day mark or later. (I don't have have the source for this reference handy, but I'll try to come back and link it later.)

I've been the 1% exception a lot. And I do mean, A LOT. To the point where I think it's a form of insanity to discount those outliers. It's not that they don't exist, it's just that they're a minority. There is a difference!

But see, in medicine, the patients of the 1% are ghosts. They aren't counted in the treatment plan.

The same thing seems to be happening with ebola. The majority medicine paradigm is a big problem because it's blind, it can't see anything outside the norm.

Oh well, there's nothing I can do about any of it.  All I can say is we've been pretty damn lucky so far. Let's hope that luck holds, it's the only thing we've got going for us.

***

On to other things...

Got food poisoning from undercooked chicken which has, in turn, aggravated the SOD. So that's been fun.

I'm trying to ignore it, hoping it will go away but I probably need to switch to a biliary duct friendly diet of yogurt, followed by more yogurt with yogurt for dessert.

And when I get tired of yogurt, I can have...more yogurt. Blech.

***
Writing wise...

I've seen some decent recovery in my earnings. I still wouldn't recommend publishing just now as the holidays are about to hit. As a general rule, that's a very volatile time for book sales. It's not that you can't do well, just the odds are more against you than at other times of the year. Wait for more favorable conditions is my advice.

Plus, I wouldn't be surprised if my sales went right down the toilet again. Ha. I've worked through my bag of marketing tricks, released everything I'm going to publish this fall and don't really have anything else I can do to stimulate sales so I'm kind of stuck for now.

I'm going to hoard what I have ready and publish starting in January.

I will say, brand building is going well. I'm hitting my goals earlier than planned. Same goes for that business venture I started a few months ago.

So I'm positioned well. Just need to write more books, wait for the holidays to be over and then hit it hard.

***

Kiddo wise...

The homework abruptly became more difficult. Ha. That will teach me! I just wish the teacher would've given us all a heads up that this was a 'warm-up' period. I wasn't the only parent wondering if their kid had been placed at the right level.

Also, I went to an academic presentation on Leonardo Da Vinci and Michelangelo and I had to laugh as I spotted their perfectionist tendencies along with what I call the 'boredom of mastery' that often goes along with being gifted. The perfectionism was patently obvious in the things they wrote and said. If you know what it looks like, you can't miss it.

I had never thought of the great masters and geniuses of the past struggling with the pressure to be perfect, so the presentation gave me a new view of the world. It was interesting to see how the two artists' lives played out in an era where there was no advice on how to manage crippling anxieties or disinterest in mastered skills.

Da Vinci, in particular, actually painted very few works and was known for never finishing art projects. Woe to anyone who paid him before the work was done!  I suspect he found it dull. While his work was a revelation for others, Da Vinci wasn't dazzled. (Alternatively, he may have been tied in knots by perfectionism, but I suspect boredom is more likely as he had no problem finishing all sorts of gadgets.) He was much more interested in his inventions, he had a passion for them that drove him forward and nothing could stop him, not even the burden of perfectionism.

Michelangelo, on the other hand, what he excelled at--art--was also his passion. He was lucky. Of course, he hated painting, but suffered through it for various patrons. His true love was sculpture. And he finished his work, which says to me he had developed some kind of coping skills to get him past the hump of his perfectionism.

Ultimately, I divined no solutions for our own little perfectionist from the presentation, more the reassurance that it will all be okay. Plus, the entertaining mental image of Leonardo and Michelangelo at my kiddo's age having an epic melt down of an intensity that only perfectionists can produce. I would pay good money to go back in time and talk to their mothers. They probably were bald from pulling their hair out.

(And no I am NOT saying my kiddo is equal to Da Vinci or Michelangelo. You don't have to be a super genius to have issues with perfectionism.)