Monday, February 27, 2012

The House of Sick and Well

First, thanks for all the comments. Sorry to be so quiet, just crazy to the max over here.

I am doing well. I saw the endo and I've been discharged unless things suddenly slide backwards, which, you know, is actually possible and scares the shit out of me. But I was glad to leave a doctor's office on an optimistic note for once.

The endo agrees that I will need to stress dose for illness and that I may have to play exercise by ear, but the fact that my system now shows some ability to stabilize itself is good. I didn't have that ability even last summer when I stopped steroids and was supposedly 'cured', so this is good progress and took nine months.

Damn, just counted that out. Kind of slow, no?

Anyway, onward and upward. I just hope my endo has learned as much as I have about this adrenal shiznit.

I did get them to laugh. They had tested my thyroid last visit and when they said the results were normal, I snorted and said, "Of course, thyroid would be too normal and easy."

Doesn't seem so funny when I write it out, but I believe that if I can make someone laugh, we'll get along okay.

The toddler is sick and managed to get us all worried last night when she bloomed a huge red... hive? on her cheek. Pink eye came with a nasty cold for her and she's not getting better, just morphing into different kinds of sick.

She stopped eating or caring about food on Saturday which, that never happens. Whether she actually eats anything or not is immaterial, this kid bugs me for food like she's part labrador retriever. Half the time she doesn't even eat it. So I notice when she's not nagging me about lunch two hours early.

I flirted with that cold a lot myself and was quite adrenal on Saturday, but decided not to take steroids unless I got worse. I wheezed a bit. Hacked a bit and now seem fine? So a win for my immune system.

Other than that, I'm good. Toddler is adorable. OMG. She kills us. She is so bossy and funny right now. I keep forgetting to write down all her best lines to preserve them for posterity. We're so senile, we have pillow talk about how cute and funny she is before we go to sleep, but neither of us can remember what she actually said.

Writing has been interesting. I am making money and I continue to work furiously to position myself to make more. However, whenever individuals make any serious money online, corporate interests move in to seize the pie. There's a lot of market consolidation now, which is resulting in fewer avenues of distribution and less opportunity for independent writers.

Big Business realized we could take their space on best seller lists and get our own movie deals (not me, others) and they have made a series of competitive strikes the last few weeks. I think they thought that their eye for quality was so precise that independent authors were surely all dreck and a non issue in terms of competition. To their surprise, they've missed quite a few gems and are getting spanked online.

Having observed this business pattern before, I would say that the golden era of being an independent author is dimming. If you were toying with the idea, don't wait too much longer.

Tuesday, February 21, 2012

Not Funny

So it would appear that 2 1/2 days of food poisoning is not be enough.

Now we have pink eye.

With a side of cold germs.

I shit you not.

Further, the timing is really bad for me as I have some real life face-to-face stuff that cannot be put off as it is very important.

So I took the toddler to the pediatrician and then called my doc to beg for meds STAT figuring I had pink eye despite the lack of symptoms.

That was a very good call on my part as my tear ducts are now red and bulging in both eyes.

There's more chaos, but I'm holding off on full disclosure until the real life stuff really gets real.

My goal now is to not infect anyone and to hopefully not look like I smoke a shit ton of pot in my spare time.

Oh yeah, the adrenals are pissed. Naturally.

Monday, February 20, 2012

I Lived!

I'm better. Sick for most of the weekend. It must be food poisoning because no one else is sick. I thought for sure this was IT though as the preschool has been working through the stomach flu in slow motion.

For about month someone has been out with the pukes or sitting in the hallway with a trash can waiting for their parents to pick them up. So we were kind of due for a demonic GI possession.

Anyway, the cool thing was I was able to exercise Sunday even though I was still symptomatic that morning. It's really amazing to have the ability to 'bounce' to not crash and burn with every little thing.

Also, by the way, we never got lice, but guess what? Once you start looking for nits, you never stop. Wow. The paranoia. Huge.

Saturday, February 18, 2012

Of Battles and Wars

I think one of the worst ways for the stomach flu to arrive must be in the midst of cooking a huge batch of chili for the church chili competition.

Especially if you went to bed, all drowsy and ready for the Land of Nod, only to jerk upright with "I forgot to make the chili." Commence the midnight cooking session, pepper it with yawns of resentment.

I felt fine. It really hit me out of the blue. The only possible hint that I was sick was wicked heartburn that was resistant to medication the last two days.

So there I was dumping everything in the crock pot and the food didn't smell so good and then...well you can imagine, right?

Once again, I'm the only one sick, but I do think this one is an actual bug and might spread. We'll see.

It played very adrenal. Lots of adrenal pain, huge wave of weakness, breathlessness, shaking and that horrid stomach pain along with that even worse feeling that something was really wrong. I fought and fought and fought not to throw up because that probably would have pushed my system over the edge.

I prevailed in controlling my stomach and the adrenal stuff receded a couple hours later--there goes that resiliency I've been missing for almost two years. I am still sick, the stomach flu told me "ve have our vays, you vill pay" and that threat turned out to be true.

I am still adrenal as well, mostly with weakness, but nothing compared to what it would've been in the past. So a victory of sorts.

Now just to win the war on dehydration.

Wednesday, February 15, 2012

Wednesday is for Whining (Or Humping, Your Pick)

So yesterday...trying to keep good notes.

In addition to what I already whined about mentioned, my sense of smell went kind of crazy. Hubby was eating Cheezits two rooms away and I could smell them.

At dinner I couldn't finish my food and there was a distinct lack of enthusiasm for ice cream.

Some adrenal flank pain.

Also, very very cold. Like shaking, teeth chattering. I sat in front of the gas fireplace and relished the sensation of imminent combustion. After an hour of that, I was just warm. Ridiculous.

I kind of think the fire alarms yesterday escalated things. First, they were very very loud and they came in unexpected bursts, which just about made me incontinent--I startle easily, like whoever is lamer than a wimp, that's me. The alarms really got me going. I remember feeling very anxious and on edge.

Second, I had a strong surge of momma bear hormones regarding the fact that my kid was hysterical and her PT was cut short due to the alarms. We kill ourselves to pay for PT, so they were f*cking with my kid and my wallet and I think the noise itself just pissed me off, priming the pump for irritation.

Anyhoo, despite my whackadoo body, Valentine's Day was fun. We kept it low key and low cost. We had a ton of veggies for dinner (that made me happy) and the toddler even ate them. Then she played 'restaurant' making our hot fudge sundaes for dessert. Hubby brought home balloons so we each had some tied to our chairs.

We also went to a (free) magic show at the library. The toddler is always making up crazy magic tricks and putting on shows, so she loved it. We got an autograph too as the guy is a ummm whatever you call a magician that is famous but not a household name. Yet. Kind of well-known?

After dinner we played games. As evidence that I'm really Amelia Bedelia reincarnated... I cut myself on the Trouble game. My hand slipped off the dice dome and hit a perfectly smooth game piece with enough force to draw blood and require a band aid (featuring Dora!). Do not ask me how that happened. All I can tell you is that this is normal for me.

You don't have to laugh at me because the hubby is doing it for you.

Tuesday, February 14, 2012

Tuesday Makes Two

Two posts in two day! When was the last time that happened?

Of course it's because I'm not feeling so hot and frustrated about that. Looks like some GI stuff is starting and appetite seems to be fading (although it might just be messing with me). BP skyrocketed with the GI stuff, so I'm now waiting to see if it calms down or not.

So...tired, weak and loopy. Blech.

Toddler had PT today and some idiot thought it was a great idea to blare the fire alarms repeatedly during her session. Yeah, like that goes well in a facility full of kids like mine who are terrified of loud noises. The toddler was hysterical and we had to leave early.

I'm consoling myself by designing the room in hell those idiots will occupy when they die for doing that to a bunch of kids.

Now we are off to preschool and then a magic show and then I cook our V-day dinner, plus write. All while feeling like my head is a whirligig.

Living the adrenal dream.

Monday, February 13, 2012

Monday Report

Friday sucked. The most adrenal crapola day I've had yet. Not sure what the trigger was, I just sort of slowly deflated to that point. I also had those low immune symptoms--sore throat, feeling like I'm coming down with a cold--but I couldn't tell you why.

Toddler is now 46 1/2" which is completely off the growth chart (although I have seen kids taller). She's also been going through a rather unpleasant phase. Lots of bad attitude. We signed her up for a karate class, which we bartered our services as slaves to cover the tuition. The instructor is going to be so good for the toddler. Boundaries. Respect. We have those at home, as I'm actually kind of strict, but this is a whole new level and it's great to have help.

Also, she'll never have the right physique for dance, but martial arts might be a good fit for her long term. We'll see. I watch her and I can picture her at competitions when she's older. Assuming she ever graduates from PT.

This blog post has no plot. Sorry. I used all my plot up last week.

Wrote 20k words. This week is focused on editing to get two stories up and out into the world. I also worked some promo and hit 12 on the Hot New Releases list on Amazon as well as their top 100 list, that was pretty cool, albeit short lived.

I have been working very hard to pull this together. It is going very well, knock on wood, kill a chicken and do a voodoo ritual naked under a full moon etc.... The downside is I have no time for anything else and it's the kind of work that sucks you in. I don't remember much about Sunday other than the stories I worked on, for example. The rest of the world faded away--it's like that when I read too.

Then when I go to bed, I can't shut off my brain. Even cheesy, lowest of the low genre writing is like working a mind twister 24/7. So I talk to the hubby, but he just wants to sleep. Last night he finally suggested if I was so wired that I go downstairs and work on his research paper for school. Anyway, it's all consuming. I hope it's not the reason the adrenals are tanking.

Interestingly enough, on Friday when I felt so bad, I couldn't work. I had to take the day off. Which is why I hate being adrenal, it eats your brain up.

Exercise has been in and out. I got in one workout last week and then took it easy after that as I didn't feel well. Not sure how it will manifest in my life this week.

Thursday, February 9, 2012

Not Bad, But Could've Been Better

Today was a low energy day. Did Zumba yesterday and then climbed 130 stairs despite my knee's loud, clicking protests. (By the way, the knee is my other souvenir from that asthma hospitalization. I guess it was a two-for-one deal. Messed up adrenals and a bum knee due to deconditioning.)

Exercise resulted in a wave of adrenal fatigue and weakness. Again, nowhere near strong enough to take me out or necessitate steroids, but I was annoyed.

It didn't help that I got up at 6:30 am and started writing. Hubby's morning toilette woke me up and I couldn't go back to sleep so...I wrote. I was awake and pretty alert on only 6 hours of sleep, which is kind of new. There were delusions of doing that everyday, but the Zumba induced fatigue squashed that fantasy. Maybe in a couple more months.

So the day went. I was kind of run down from the adrenals and the early start, but I did a lot anyway. Went to a movie by myself at night. Hubby bugs me about 'getting out of the house' when I whine about never getting a break from being the primary caregiver. I've been telling him for two years now, that I don't have the energy to go out. If I did, I would.

As for today, I'm tired out. Normally I would exercise again today, but instead I am taking it easy. Again, nowhere near the intensity it's been, it's just that the malingering Groundhog's Day nature of this adrenal crap is wearing thin.

Other changes...

My body is hosting a Welcome Home party for the PCOS which is raging at full strength. Acne everywhere. Weird ass PCOS hair. Bloating. Sugar cravings. It's very obvious to me that I've had ongoing never-ending adrenal issues even if I and everyone else thought I was 'cured.' The adrenals clearly dominated over the PCOS.

The PCOS kind of ruins my adrenal recovery victory lap.

The adrenal stuff was also pushing my BP down. Now it's creeping up and I'm going to need adjustment in the BP meds. So, basically, if a patient is hypertensive and then goes through adrenal insufficiency, their BP is depressed, but it may not go low enough to meet clinical definitions of adrenal insufficiency due to underlying hypertension.

Also adrenals do not stop white coat, this is something that multiple adrenal patients have experienced. Yet the medical community continues to deny this is possible.

I get that there's a physiological basis for that denial, but we need to go back to the drawing board on that one. It's the same with the idea that a crisis can't have high blood pressure. I can find multiple patients with better blood work than mine who prove these conventions wrong. There are HUGE gaps in the science here for adrenal issues. HUGE and no one, except the patients, cares.

On the writing front, I have written 13k word this week and should top out at 15 to 16k. With last week's 10k, that's two short stories, one novella in progress and a novelette (which is almost a novella). They still need to be edited, pretty heavily in fact, but I've been very productive over all.

I have also discovered the train wreck that is Dance Moms. Watching it makes me glad my kid is going to be 6 feet tall and stocky, I could not handle it and neither could she. However, we have signed her up for formal dance classes at a studio with a competition team. Fortunately, the four-year-old class is not on anyone's radar. Also, she can't plie or ball change for love or money. I'm okay with that.

Monday, February 6, 2012

The Next Stage

So Sunday I woke up to full body aches and I was a little nervous. My morning elliptical work out was awful. I was tired and I just couldn't get myself going. Despite everything I've written here, I did not take steroids.

But it was okay. I got a little more tired after the work out, but it passed in a couple hours.

Then I took a delicious nap because we had agreed on a lazy Sunday after church.

And did another Zumba workout.

All without steroids.

We'll see how it all pans out, but I think I'm transitioning to the next stage where I may not need to stress dose for exercise anymore. Illness remains to be seen.

A couple things have changed in my body's status quo:

1. I don't get the 'adrenal pain' so much anymore. It used to be almost constant but now it's mostly gone. Medicine doesn't recognize this pain, but since it correlates so well with when I feel adrenal and now that I'm not so adrenal, I'm comfortable blaming it on the adrenals.

2.I can gain weight now. Not so much lose, but I have to be careful with what I eat. So far I'm maintaining, but I really have to watch the scale and remember my carb free pass is now gone. All those times I ate ice cream and cake and candy and didn't gain weight? Yeah, that's over.

I do still have issues with low appetite when I get run down and I have continued to have low immune symptoms after exercise, just not every work out.

As for baby shower gifts... yes gift cards are really awesome because, even though you put the entire store on your baby registry, there's always something you need that didn't know you needed until after the baby arrived. Plus, diapers are expensive. So are breastfeeding and formula feeding, those gift cards are great financial cushions.

My favorite gift was from work where they presented me with a $500 Target gift card that somehow lasted us a year. It was a huge help.

And,when in doubt, books. Babies need books. Tactile books. Classics like Cat in the Hat. Just books. Nobody buys babies books and it's a crying shame. At 7-8 weeks their vision is such that they like to look at the pictures and hearing mommy or daddy's voice? Is just gravy.

In case you wondered, I got them several books and then a few outfits in bigger sizes, because everyone gives you cute newborn outfits and then your baby has to go naked after their first big growth spurt (about five minutes after birth) until you can get some bigger clothes. Not that I know anything about that because I'm a perfect mother. Ha.

Saturday, February 4, 2012

Just Take Steroids

I have a lot to do, which means here I am procrastinating online.

First, so I do not forget and so you can remind me I said this, the reason I take 5mg on the days I exercise is so I don't feel like roadkill later. Did two work outs yesterday. One jumping around making things up and then a Zumba Wii work out.

Today, busy as all get out: work, baby shower, dinner party and I'm okay. Because of the 5mg.

Duh. When will I get this?

So....Consulting went okay. Client informed me the day before they weren't in the same country, which, you know, would have been nice to know before I spent three days putting things together assuming they were from the country on their gmail account. It matters. A lot.

Then we did the baby shower, which I enjoyed because people were interested in what I had to say regarding various'the business of writing' related things. It is not often anyone gives a shit and, for some reason, I had a very interested audience.

Hmmm, now that I think about it, maybe they were frustrated writers?

But hey, people wanted to hear about me and what I thought and they were suitably impressed. I felt important! At a baby shower.

Also, it's kind of comical to watch parents-to-be unwrap presents with absolutely no clue about what is to come. Oh, they laugh at that butt paste stuff now, but wait until it fails to cure the diaper rash from hell.

And their confusion over hangers as baby shower gifts. They have no idea there are never enough hangers. Ever. The gift of hangers always come from experienced parents who've been hanging their kid's baptism outfit with a potato chip clip and some pipe cleaners...for the last five years.

Your first baby, you think you need everything. We were the same way. I bought all these changing pad covers and then ended up using just bath towels folded in half--they were much easier. Should have registered for some nice towels instead which would have lasted years, but noooo, had to have the useless changing pad covers that ended up in the land fill.

I had no idea about hangers either.

Thursday, February 2, 2012

Just Right

Penelope asked about secondary adrenal insufficiency and my recovery. My rather garbled response is below.

There are several kinds of adrenal insufficiency. You'll most commonly hear about Primary and Secondary. What is the difference?

Primary is pretty much a complete failure of the adrenal glands. So your brain is doing its job, sending all the right signals, but the adrenals are asleep at the wheel and unresponsive.

In Secondary, the system failure is in the brain. I think medicine does not address the fact that decline can be slow and gradual with symptoms appearing long before tests will reveal anything useful. You can retain some functionality of the HPA axis with Secondary and medicine has no freaking clue what to do about that craziness, so it ignores the problem.

Medicine is all about total failure when it comes to adrenal glands. 99% of the time medicine misses the nuances of adrenal problems and the tests are not cutting edge, which does not help. The textbooks are lacking, which leads me to think the hands-on training is pretty lackluster too.

The end result of primary and secondary is pretty much the same, not enough cortisol in the system. Treatment is roughly the same, but Secondary doesn't always have the blood pressure issues of Primary. With Secondary it is good to image the brain to look for tumors or other bad actors--unless yours is steroid induced.

The main cause of Secondary is steroid use and affects something like 6 million people (US). For comparison, GERD affects about 7 million people (in the US) and look at all the meds and commercials for them! Adrenals get nothing! That is insane!

I do not know if I will ever fully recover. I would expect, at a minimum, that I will always need to stress dose for surgery. Right now I still need to stress dose for exercise and illness. I could get worse, I could get better. Hell if I know.

I have corresponded with someone who has Secondary but also retains some functionality and I feel very similar to them. (Except they test better.) They struggle to know how much steroid to take because their system isn't completely dead. I'm on that tightrope now.

I hope that answers the question and that I remembered everything right. I like the Merck Manual for the basics and would suggest you start your reading there.

As for me...

1. Did not exercise today so I wouldn't have to take steroids. That is just not cool. I'm trying to commit to stress dosing for a month and then see where I'm at, but sometimes it's just easier not to exercise.

2.5 mg is not enough. I need 5mg when I exercise, so at least I know that much now, but I keep resisting the whole thing, like that's going to help.

2.I got a (small) consulting gig. Holy shit. My competence remains to be seen and I am nervous as hell.

3.I wrote 10,000 words in 4 days which is pretty cool considering how busy I've been. Unfortunately, the story is no longer streaming through my brain, now it's work.

4.Some business-y post I wrote went viral and I got mentioned on a huge blog that I majorly respect. Sadly, I am probably the only person I know who can go viral in such a way that it sells no books.

5. We got free entry and free pizza due to the puke and play incident I bitched about.

6.The zumba people still have not refunded my money. I will SO fry their asses via a Better Business Bureau complaint.