I Called It

Hubby's down.

Fever of 101F.

"I'm achy," he says.

"It's the flu," I say.

"No, no it's not." His lips tighten and he glares at me.

Diagnosis? Denial.

But thermometers don't lie.

So we'll see whether I succumb or not.

The Coming Storm

So the last post I wrote about asthma past, present, future never did get around to what I really wanted to say which was this:

It is clear that, while things have improved, I still struggle. I need to plan for a future where I'm not as capable as I am today. I am not reliable.

The asthma is going to continue to be a problem and my lung capacity will continue to erode. Right now, my oxygen level only flirts with the cutoff for intubation, It has become more and more apparent to me that this asthma gig is a progressive one. I really don't see the asthma going backwards, only forward. I hope I'm wrong, but if you think aging is a bitch on your skin, you should see what it does to fussy lungs. Not a good scene.

So the writing is a good way  for me to produce income, but it requires high output and a fully functioning brain on a consistent basis. One bad asthma episode and my income will be wiped out. Should I find another job with an outside employer, I would not be able to meet performance expectations. Between the fatigue and cognitive issues from steroids and subsequent low cortisol levels, it would be easy for me to be unemployable for a year or more.

For the record, I think half the reason I'm such a slow writer still is because I still have word recall issues. The phrase or word will be on the tip of my tongue, but I can't get it out. I spend a lot of time editing to get my prose up to snuff. The effects of the last few years are far reaching.

So what am I going to do about all this? I have some ideas. The trick is to leverage what I know about being a successful writer into a business model that doesn't require me to create content on a weekly basis. In 2013 (assuming the world doesn't end today) I will be launching a few micro business initiatives around the indie publishing phenomenon. I will continue to write in the hopes of building a fan base that will wait for my work, which will help me weather any long lulls between stories.

Today the sun is shining and life is good, but I'm preparing for the storm.

Ghosts of Asthma Past

My hospitalization in 2010 was preceded by my daughter being sick for a good three months straight--back-to-back bugs. The last bug savaged my lungs like a cannibal on (ha!) steroids.

So here I am today and my kiddo has been sick since before Halloween. She is on at least bug number two, and, at the moment, is worsening as the gunk climbs up from her lungs to her sinuses. I am concerned for her, but there's nothing to be done beyond worry. No need for antibiotics right now or breathing treatments, just hope that it clears up soon.

On top of that....Thanks to Facebook, I can now say I know more people with the flu than without. How we don't have it yet is  mystery, but I worry that it will be bug number three and history will repeat.

When I was in the ER back in 2010, one of the research docs came down to see me. They wanted my DNA as a "non responder asthmatic" (meaning I took all the meds and the asthma didn't care) and they talked at me for a while (I was a bit of a captive audience). Their words haunt me.

Their spouse has bad asthma and the early school years with their kids were--and I quote--"hell because of the bugs". The spouse stayed home in an effort to stay out of the germ pool.

The look in their eyes as they told me all this was chilling. It was the look of knowledge someone wishes they didn't have, of knowing the hard road ahead and holding back the directions because it would spare no pain. It was pity.

I don't remember a lot of being in the ER and in the hospital during that particular episode, but I will never forget that doctor. They're my own personal ghost of asthma past, present and future.

In Search of a Second Wind

I'm without progesterone and I've had fairly active asthma the last few days.

I'm tired.


We ran some errands and went shopping...I hit the wall big time.

I ate, but it wasn't enough. So add in some low blood sugar. 

I need to work but I'm barely with it enough to write a coherent blog post. I would like to lay down but that's probably not going to happen for a while longer.

Ugh. Dislike mucho. Today is going to be a wash.

My Heritage

Well the kiddo is sick, but it's not the flu. Some ongoing respiratory bug that has moved from a cough up to her sinuses. Hegemonic germs.

I think I've just horribly abused the word hegemonic, but I don't care. I like the way it sounds.

She's not feverish and is in good spirits...the whining is at its usual full bore. She's currently running through the house blowing a New Year's noise maker loud enough to make my ears fold over to protect themselves. So, full steam ahead.

I have the asthma just in time to not enjoy a lovely Spring-like day less than ten days before Christmas. The asthma does not like temperature swings and is generally a cantankerous life companion. I would like a divorce and a restraining order. Someone tell me how to get one.

Anyway... story about my parent of the spine surgery.

They were t-boned yesterday by someone who failed to yield when they were supposed to.

A dramedy of errors, this surgery.

They are okay. Only minor whiplash, but goodness. Really? And I thought I was a real calamity Jane.

At least I know where I get it from.

Oh! And someone asked about the kiddo's diagnosis. Initially I did not share because I had a run-in with another parent who had a conniption fit of some kind. Apparently, that parent kept a weaponized score card and, without understanding the game we were playing, I lost. Therefore I sucked as a mother and other nastiness that I'd sooner like to forget. I wasn't interested in what infertiles call the 'Pain Olympics' so I thought I would just keep my mouth shut here regarding the Name of Things.

Now, I'm withholding information as it is identifying. Not that I would shrivel up and die if one or two trolls looked me up, but I think, for her privacy, I should be circumspect.

Patients Are the Answer

I'm thrilled to report that, so far, I'm paranoid with delusions of flu. Let's hope it stays that way.

Today we drove almost two hours to a family meet-up for the neurological thingamajig the kiddo has. It was edifying, and I am so glad we went.

On the way down, all I could feel was the weight of my other obligations pressing on me. I couldn't remember why I wanted to spend two hours in the car with a screaming child (she hates the highway, it's a sensory thing for her) to meet people I didn't know that we probably had little in common with given that my kid is allegedly on the 'mild' end of her disorder's spectrum. I have so much work to do at home, it seemed like a poor use of my time to go.

Then we arrived and all the shared real life experiences opened my eyes. I learned things I needed to know. I realized that being discharged from OT/PT is not a discharge from the diagnosis. We still have work to do and a road ahead of us to navigate.

I mean, I kind of knew that, but thought we were in an okay place. She's within the realm of normal on pretty much all the motor stuff now.  She won't be crafting pop-up books or Star Wars snowflakes (it's a real thing) any time soon, but she can meet the criteria of 'motor normal'.

And then one mom showed me how some of the recent behavior issues we've been trying to resolve were all hooked into our kid's neurology. That was a big light bulb and will inform our parenting moving forward.

Patients live with the diagnosis. Doctors only see it in an office visit, a very controlled environment. Patients are much more knowledgeable about what the disease really looks like naked and how effective various medical treatments are. When they get together and swap information, they change lives.

It's really amazing when patients are on the cutting edge while mainstream medicine is behind the eight ball. I think we'll see this phenomena more and more thanks to the internet. Eventually patients aren't going to take this shit anymore and will coordinate online in such a manner that they can't be ignored. That will be an interesting day.

It's Coming

The kiddo has the same hollow-eyed look as the neighbor kid. I would bet she's 24-72 hours away from impact as that seemed to be the time delay with the neighbors.

Or not.

Oh how I want to be paranoid! I wish it was paranoia! Team Nuts for the win!

I'm over here all adrenal because I'm off progesterone for the next however many days. So I can't tell if my body is just pissed I'm denying its hormone of choice or if I'm on the flu's hit list too.

Either way, I spent the better part of the after noon in bed for the first time in a long time.

Watching this. 

Dr. Lustig continues to be my science crush. Sigh.

Now I'm going to meander a bit...

Took the kiddo to the ped yesterday. She did her antibiotics, was well for all of two days and then began hacking like Santa after centuries of cigar smoking. Initially, it didn't seem too bad, but we recently progressed to shortness of breath on activity and now she sounds worse than Santa after centuries of cigar smoking.

Surprisingly, she's not up all night coughing.

Ped had nothing to say other than they didn't see anything serious. We're going to treat it like asthma and see if it improves. If not, back we go...or not, I haven't decided.

On our way out of the office, the kiddo says, "Now I'll be like you, mommy." This was in reference to the inhaler she's to take. She was happy about it too, whereas my stomach sank.

I took a deep breath and did my best to explain what mommy has is something I hope she never has to endure. "Be like your Daddy," I told her. "He's never sick."

This confused her. I foresee some work ahead on this issue. Surely as much as she's seen the sick she's also seen how mommy always plans crafts, read books, takes her to school and other events plus works? I'm not exactly a Victorian hysteric (this blog aside).

Anyway...the shooting in Connecticut...my heart breaks. We have a society and political system that would rather be on the sidelines of funerals for five-year-olds than fund the programs or create the legislation that stop the violence before it starts. Once is a mistake. Two, three, four, five, six mass shooting--all just since I've been an adult-- is unacceptable tolerance of a sick, toxic status quo.

It needs to stop.

And all the gun nuts whining 'but you can't take mah guns' need to stfu.