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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.

Daily life with ichthyosis: Lack of mobility

Over the past few days, I have been thinking a lot about mobility (or lack thereof). For me, the cold and dryness of the winter always brings with it a decrease in mobility, but the past few weeks have been a lot more severe than usual for me.

Jennifer wrote last week about the boys limping around a bit more now, given the cold. That’s certainly continued for us!

We were fortunate this year that, despite a grazing hit from Hurricane / Super Storm Sandy, we had mild weather for Halloween. This year, the three boys dressed up in homemade costumes as Daleks (the iconic villains from Dr. Who who shout out “Exterminate!”).

Daleks in Dr. Who are scary villains, but they were somewhat less-scary in the early history of Dr. Who, given their apparent inability to climb stairs. (This weakness was resolved once the special effects budget increased to show the Daleks hovering and then flying around.) Just like the original Daleks of the ’60’s and ’70’s, our three little Daleks also had difficulties with stairs, but that was mostly due to the fact that their costumes didn’t allow them enough room to lift a foot over the step (as opposed to, say, Jennifer not installing the appropriate anti-gravity module).

But costume-related problems weren’t our only mobility issue on Halloween. Both Cookie and I had some issues with our feet which made the evening rather uncomfortable.

October 31 of this year was the first day that Cookie went into school with his cane. He got off the bus on the afternoon and began — very slowly — clumping the block-and-a-half from the school bus stop to our house. I met him at the bus stop and debated carrying (60 pounds!)  him, or having him wait while I ran back to the house and fetched either our car or a rolling wagon. Fortunately, my waffling was cut short by a very helpful postman who offered Cookie a ride in the mail truck.

Cookie’s recent decreased mobility that afternoon was the unfortunate combination of the cold and dry weather making additional moisturizers necessary, a rushed schedule which resulted in less cream than usual on the feet a few days earlier, and larger cracks/fissures on his feet as a result. So that meant he had decent mobility fresh-out-of-the-shower early in the morning, but as the day progressed, it became a lot more painful for him.

Our solution on Halloween was that in the afternoon, we tossed Cookie into the shower for his second hour-long soak of the day, in the hope that the afternoon shower would leave him mobile enough for walking around the neighborhood in the evening.

The plan worked ok in theory. We wound up spending time doing last-minute adjustments to the costumes and doing a madcap run around the house for some accessories and other sundries. Our family walked around the neighborhood for about an hour. Cookie, with his afternoon shower, was more-or-less mobile; but his youngest brother, Momo (age 4) was not. I think that for Momo, it was a combination of the dry skin, the much-shorter legs making him have to work harder to keep up, and general tiredness of a 4-year-old running around at 8pm, all balanced against the excitement of being out on Halloween.

And then, there was me.

Rachel’s foot, evening of October 31, 2012. (c) 2012, all rights reserved.

To the right is a picture of my left foot, taken after I had returned home and we had gotten the kids out of their costumes, gorged on candy, settled down (hah!) and into bed. I must confess, I hadn’t thought that *I* would be the one with mobility issues that night, but as the night dragged on, I started feeling more and more pain in my feet.

For the past few days, I had been having problems with some sores on the arches of my feet. I have a sneaky suspicion that a skin infection I had elsewhere on my body spread to my feet. I can’t be sure, but I think that some scratching I did on my feet much earlier last week might have gotten aggravated and, well, take a look at the picture.

Bottom line, the treatment for those sores for me was putting on a protective layer of Aquaphor in the morning and evening, and being mindful of the shoes I was choosing to wear to work. (Boots are useful for all kinds of reasons. So maybe the fall isn’t all bad!) I continued to put cling wrap on my feet at night, but was trying to balance keeping my feet moist and flexible during the day against the risk of giving the sores at an even higher risk of infection.

So because of the fear of being too infection-prone, I hadn’t put the plastic on my feet before we went out on Halloween. But after less than an hour of walking around the neighborhood on Halloween, I was starting to feel quite uncomfortable and not-entirely-mobile. With Cookie limping quite badly, and Momo (age 4) really struggling to keep up, too, we decided to cut it all short and head home.

Fortunately, the foot problems I experienced on Halloween healed pretty quickly, and the sore spots on my feet had almost vanished by the weekend. And so between Monday and Tuesday of this week, I contributed 28 hours of my time to one of our candidates running for office, and my time on Election Day on Tuesday was spent mostly on my feet at a polling place. And while I was tired and my feet were sore on Tuesday night, I didn’t think it was anything above and beyond the tiredness one might feel from that level of activity and excitement.

Thursday night, though, I began experiencing something totally different on my right foot.

At work on Thursday, I was feeling more-or-less normal, except that my right foot started hurting a bit more than usual in the afternoon. I went home in the evening and put on some extra cream (like I usually do) and I hopped in the car, headed for Richmond. During the two-hour drive, the pain in my right foot worsened, up to the point at which pressing down on the accelerator pedal with my right foot was extremely uncomfortable, up to the point where I was wondering if I could make it home safely. I did, and I limped into the house, whined at Jennifer to help bring in my purse and other stuff, and promptly plopped into bed, hoping that things would be better in the morning.

I was wrong.

Rachel’s foot, evening of November 9, 2012. (c) 2012, all rights reserved.

So here’s a picture of my right foot, taken on Friday night. An important “looks can be deceiving” lesson — this one might not look as bad as the picture from Halloween night, but it hurt an order of magnitude more. On Halloween night, I was gritting my teeth and limping around, but I was more-or-less mobile during the evening. But on last Friday afternoon and last Friday night, I was unable to put any weight at all on the ball of my right foot, and was in so much discomfort that I was pretty much confined to bed.

I woke up on Saturday morning, and things were still not any better. I went into the bathroom and soaked my feet in the tub for about an hour. I broke out the Dremel (yes, I use a power tool as a personal hygiene device) and sanded down the part on the ball of my foot on top of the purplish area in the picture.

What I thought was happening was that I had a blister on my foot, but the thick scale on my foot was preventing the blister from popping, and that the pressure building up from all of that was what was causing my pain. And I was right — a few seconds with the Dremel was all I needed to “pop” the blister and out oozed, well…ooze. And with a little Neosporin and a bandage, I was more-or-less ok, although I still used a cane to get around on Saturday. Sunday morning, things were better, but my foot was still oozing a little bit.

It was a beautiful day outside on Sunday, so I’m a little chagrined that I wasn’t able to be outside raking up all the leaves and doing yardwork. Ok, that was a blatant lie about the leaves and yardwork, but I’m still disappointed that I’m not yet quite fully mobile.

I think one of the hardest things for people to understand about the way ichthyosis affects my life is how different things can be for me from day-to-day. On Tuesday (Election Day), I was on my feet the entire day, walking around from 5am until 9pm. And I was fine. But on Friday, it was extremely painful for me just to make it down a flight of stairs. Sunday morning, I was fine at church (albeit dragging a bit); Sunday night, I’m getting around slowly with the aid of a cane. And by the time Tuesday comes around and I head into the office, I’ll probably be back to “normal”.

 

2 comments to Daily life with ichthyosis: Lack of mobility

  • Pauline

    Hi Rachel.

    I can relate to you so well, your feet are exactly like mine, and mobility is a huge issue for me. And yes people find it hard to understand that one day you can walk and the next day you are bed ridden 🙂 My feet cannot even walk for 10 minutes without blistering. I spend a lot of time with my feet elevated up in bed, and they never blister then. But I have to live a life, so I pace myself and do things in short bursts, such as washing, and shopping on another day, in my motorised scooter.

    While I am on Neotigason I am not getting many blisters on my feet at all, just every day water ones, and certainly not under the thick stuff, as they are really low at present.

    Thanks for sharing the day in the life ‘of your feet’.

    Love Pauline

  • SP

    Hi, Thank you for this post. I am parent to child with ARCI (under 1.5 yo). Our dermatologist has observed child may have some mobility and function issues in hands and feet due to tightness of skin causing fingers and toes to bend and not straighten. They recommended massaging and stretching fingers and toes as well as applying Tazorac cream to hands and feet (reducing scale contributing to the tightness). Was wondering if you have any experience on this and improving the mobility and function issue in the hands and feet? Thanks.

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