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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

On Polar Vortices and Hot Water

The polar vortex is passing through Virginia, so thankfully we’re going to be warming up soon. (And no, it’s not a liberal hoax.) Temperatures near me yesterday morning dipped down to -10 F (-23 C), with the windchill even worse than that.

On Monday, Jennifer blogged about squawking in the shower and how our kids sometimes complain — very loudly — about their morning bath routine.

In a bit of an ironic coincidence, this morning I did a bit a screaming in the shower myself. I woke up and dragged myself out of bed, undressed, and turned on the shower.

No hot water.


I briefly considered my options. Back when we started blogging, one of the first articles I wrote was about how morning showers are a must for me. Skipping my shower altogether would mean I’d exude an unpleasant odor from my built-up skin throughout the day, and that I’d be really uncomfortable throughout. And since I had a bunch of in-person meetings at work scheduled, I felt that probably wasn’t the greatest idea. 

I briefly considered heading out to the kitchen and boiling a few pots of water to add to a bath. Then I looked at the clock and contemplated my early-morning meetings. Ugh.

So I did the cold-water dance. Fortunately, the water wasn’t ice-cold; but it was still several notches colder than “tepid”. I may have woken up the neighbors with my exclamation upon jumping into the water stream. It was really quite…brisk. And a minute or two after getting in, I think I had managed to convince myself that the water was actually warming up.

(It wasn’t — what can I say, sometimes I delude myself.)

Our family had spent the holidays with family in Ohio, and the house where we were staying has a slightly smaller hot water tank than the one in our house in Richmond (or the system in my apartment building). We joke with the children about the consequences of not timing things, how the person taking the last shower runs the risk of running out of hot water, and about how others in the house sometimes don’t take our showers into account and turn on the washing machine or decide to wash a car while our family is in the middle of using up all the hot water in the house.  “Yes, it’s 6am. Go take your shower now before everyone else. If you wait until after Grandma washes the dishes, you’ll wind up doing the cold water dance.” The older ones have learned the hard way over the years. Funny how eager they are to get right in now!

When we were in Ohio, it was bitterly cold even before the Polar Apocalypse hit. The kids were great about getting their showers, but on at least three days, all they wanted to do was go play in the snow. When they came in, they had the usual pink cheeks and wanted to chug hot chocolate, but with the long showers and adequate creaming, their skin held up alright, with only a few cracks and dry spots. Avoiding the cold water dance paid off for them.

Let’s just say that I practiced that dance quite a bit this morning. Perhaps I’ll share some moves with the kids this weekend? In any case, after 20 minutes or so, I felt like I had done enough to get my skin issues under control and to be hydrated enough to be comfortable throughout the day, but three hours later, I already feel some itchy patches on my torso and elsewhere.

I’ve been writing here about my experience on 40 mg/day (0.6 mg/kg/day) of isotretinoin (also known as Accutane and other names). I feel like the isotretinoin has made a really big difference in my quality-of-life — it’s made my skin a lot more flexible and easier to care for. But while I’m able to ease off on the cream and I don’t need to do as much scrubbing off of the scale, I can’t ignore skin-care altogether. Going to work without a morning shower still isn’t an option for me. And for the past couple of days, given the really cold and dry air, I’ve been using cling wrap on my feet at night. It would be really unpleasant for me not to deal with that.

I hate to think how uncomfortable I’d be this winter without the isotretinoin. Ugh.

Oh, and the cause of the lack-of-hot-water? The apartment building engineer helpfully told me, “Oh, right. We had to switch over from electric to gas this morning.”

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