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Posts Tagged ‘Alopecia universalis’


I know it’s a scary place, but bear with me……….

In my own head, I am funny.

Quips are off the cuff, and leave people digging for their dictionaries.

Actually, I used to be. Once I got sick, it became a struggle to even understand what I was thinking in my own head, much less spit it out and have a result that made any kind of sense. I confess I’ve gotten to the point where the strange looks people give me don’t bother me as much. It’s part of life. I deal with it and move on.

In my own head, I am skinny.

Yep. Skinny. Like I used to be. Only older. When I look in the mirror, I find myself thinking “They always say the camera adds ten pounds….” and then come crashing down as I realize that I’m just using my eyes. I’m pretty sure they are broken………

Now, before all of y’all go off on me and give me the speech about loving my body and size doesn’t matter as long as you are healthy blah blah blah, let me just say this: if you’ve been in a position where your body has become an alien and something you don’t really have much control over at all, then you might be able to understand my thinking without too much work.

Of course, if you’re a girl, you probably don’t need to reach to understand this, since you’re sitting there nodding your head. I’m considering investing in one of those full-length fun house mirrors that lengthen you, but that would add to my stuff problem, and I’m really, really still trying to be good in that department.

In my own head, I am young.

Ok, so I’m not really old. I’m 40. Shhh, don’t tell anyone. 😉

This is one of those things where most some days, I scratch my head and wonder when I got old enough to have kids. And then I realize I don’t just have kids, I have kids AND teenagers. 😯

Ya, I know. Our oldest is going to be 16 in 2 months. And that just can’t be true, because I am not old enough to have kids. Well, ok, maybe a toddler or two, but teenagers? Sheesh.

I’m so anal with things that I actually have documents saved that chronicle time- time having done this or that, because thanks to my brain mush (which must mean I really am not young), wait- what was I saying?  Oh yeah……. I keep track of stuff, like how long I’ve been doing certain things, because at some point, it’s all a jumble and I honestly can’t remember.

I keep track of things like how much I run; how many miles are on my shoes, and that kind of stuff. Recently, my last batch of dates was how long I’ve been doing my Community Bible Study (CBS), because I’ve lost track. Turns out, that’s been 8 years, 5 of which have been in the children’s department.

And homeschooling? Yep, we’re brand new at that is what I think in my own mind, but now we’re getting settled, since it’s been a few years. The reality is that it’s been 9 years, and our son begins his final two years of high school in the fall (except he’ll probably start some college classes then).

I’ve been out of high school, too, for over 20 years. I’m not sure how that’s possible, but apparently it must be, because that’s what the calendar is telling me. Heck, even Big Dog is about 10. Ya. We got her when the baby wasn’t out of the box yet. By default, that makes Barfy Cat 8.

My head is a great place to be, because then I can ignore things like those pesky facts. Yep, I am still young……..

In my own head, I am still smart.

I can’t remember where I wanted to go with this…….. oh yeah- In my own head, I am still really smart, like I used to be. Things started changing when I got pregnant for the first time, although it wasn’t too bad. Initially, I chalked the brain farts on pregnancy brain; then it was breastfeeding brain. Since I haven’t done either of those in a number of years, I pretty well have to confess that maybe it’s age related. Meh.

And then I remember that it’s probably disease related………. Used to be, I was blessed with a photographic memory. As in, I could read something and remember what it said usually verbatim, in addition to what part of the book it was in and where on the page it was located.

I used to be able to memorize anything and everything- when we got our first car (a ’94 Mustange GT, bought in ’93), I memorized the VIN number at home that first night. No idea why; I think it was by the time I recited it to insurance it just kind of stuck. 3 4 years ago when we traded it in for hunny’s truck, that number was still in my head. No idea why.

I was considered by some to be a “compendium of information” and I really had a good time with Trivial Pursuit. I haven’t played that game in 20 plus years, and I had to struggle to remember the name……. 🙄

Nope, when I got sick, loosing this was the thing that scared me the most out of everything. It continues to be the thing I miss the most, too. The one thing I could count on 100% of the time is gone, and some other kind of mush is taking up space up in there. We figured out this was basically the result of the constant inflammation, and if I could just get rid of that, I’d get my mind back. I think I’m about at 50%, but I’ll take what I can get. I don’t really have a choice, and for the most part, I can remember driving places, so that’s a win in my book. Something is better than nothing!

And sometimes………. I have a moment of clarity. Sometimes, things are crystal clear to me, like they used to be. I had an episode a few weeks ago where I left the shopping list at home because I forgot where I put it. And it was a LONG list, with unusual items on it. Surprisingly, I didn’t miss a single item on the list, and I could remember it, just like the olden days. It was fleeting, but it made me smile. *sigh*

In my own head, I am still beautiful.

This is one of those that is completely superficial, so if it’s going to make you think less of me, click away now………….

In the olden days, I looked good. I’m too short to be a supermodel and I was probably never emaciated enough, but I had some decent qualities- good skin, decent (although very fine) hair, dangerously long and dark eyelashes, and good muscle tone.

Now, my mantra is: Thank goodness for makeup!

The first sign of things to come was losing a good size chunk of hair off the top of my head. To be fair, we tried to convince ourselves it might be related to post-pregnancy hair loss, even though I had a suspicion it really wasn’t. Fortunately for me, I only had to do the comb-over every other year for the following years, although there stands a good chance that eventually, it’ll go from being alopecia areata to alopecia universalis.

Honestly, I’m looking forward to that, because then I can just get some wigs and be done with it. And truly, there are only so many bald thin spots you can comb over before your remaining thin hair is all used up. It’s bad, I know, but when you hair is extremely thin and very fine, it’s just a disaster. Besides, it would be nice to not have hair some places anyhow. If I lose it all, I won’t have to worry about shaving my legs, and that would be another score in my book.

Then there is the skin……….. while we’d like to attribute the discoloring to my medication, the truth of that is that it started happening before the new medication, which has a sun warning on it (as in, don’t go out in it ever unless you are totally, completely covered from head to toe, as IF that is going to happen when you live in a desert……) While my retinas are suffering from de-pigmentation, I’m picking up pigment in places I’d rather not.

And muscle tone? Puh. I’m one of those people who absolutely does not look like a runner, because despite the miles, I usually have no muscle definition. I thank the inflammation for that one, too.

So, ya, I have to say thank goodness for makeup and for hunny, who is still somehow convinced I’m beautiful. Maybe I ought to be thankful for rose-colored glasses or delusion, too, from which he seems to be suffering.  😆  No, really, that’s the power of love, and is a fantastic example of what real love looks like. We always said real love looks like wiping your partner’s/spouse’s behind when they’ve had surgery and can’t, or holding their hair when they barf……… I think this will have to go on that list.  😆

In my own head, I am tall normal height.

Yes, that’s right. In my own head, my 11-year-old neighbor isn’t taller than I; I’m not shorter than 1/2 of my kids, and I don’t need to pack around a step stool to get to the second shelf of my upper cabinets. In my own head, I don’t need help reaching things numerous times a day because I am tall enough to get them on my own.

Not much more I can add to this.

In my own head, I am 100% healthy.

I believe in the power of positive affirmation, so this is something I literally tell my self numerous times a day; particularly when I am trying to talk myself into just doing my run already. Ya, I need to say that a little louder today, because the other side of my brain is being stubborn and ignoring me.

In my own head, I am infinitely interesting.

You can stop laughing now. It’s my delusion, and I’m keeping it.

Yep, in my own head, I am infinitely interesting and multi-faceted, so much so, that random strangers give pause to ponder the wondrous information dripping from my lips.

The reality is, I’m pretty boring. We strive to be drama-free by design. I give that effort two thumbs up, because the reality is that the most excitement we get around here is counting how many eggs have been laid today………. And who is pecking who- don’t forget that! 😆 Oh! And how many nesting boxes do we think we’ll need once the babies get to that point…………..(seriously, you didn’t think I’d not say something about chickens, did you? :lol:)

My head is a great place to live, I have to say. I’m pretty sure I could get lost in there and be endlessly entertained with the fallacies contained therewithin- and the characters that live in there, like Frank and Macy, for example.

What’s living in your head?

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