We Mutants

“Now remember — you’re special, just like everyone else!”

It seems that classic punch line (for all the jokes on useless self-esteem boosters) was never truer.  At the ever-entertaining NeuroLogica Blog, Steven Novella explains recent findings that everyone is a mutant.

Given my numerous neurological quirks, I had long assumed my mutant status to be true, and when finally diagnosed with prosopagnosia (which can result from a single point mutation), I then took it to be a given.

As Novella, points out, not all mutations give one super-powers; in fact, most of mutations are neither beneficial nor detrimental.  There’s certainly nothing exciting about hyperacussis, as I’d previously described in Can you sue your Fairy Godmother for malpractice? Some things like the are just annoying; were I graceful, the hypermobility might have enabled me to be a dancer or gymnast.  Instead, I’m just arthritic and bruised, for all it’s handy to always be able to reach that itchy spot.

100 – 200 mutations per person may be trivial in the genomic sense, but is far from trivial when considering human diversity.  Mutation is normal.  It’s ubiquitous.  Not only are there no “perfectly average” people, but we’re all mutants.  Now, can we finally lay disablism, transphobia, and the rest of the xenophobic rot to rest?

Now ’scuse me while I go for a soak in the tub; maybe I can distract meself from this silly jingle that’s gotten stuck in my head:

I’m a mutant, you’re a mutant, xe’s a mutant, too.

We’re all alike in our differences, so whatcha gonna do?

Periods

Every now and then someone asks a question that helps you define an issue in life.  Recently a nurse asked me, “Do you have days when you’re not in pain?”

I considered this for a few seconds and replied, “I have periods during the day when I’m not in pain.  Usually because of my meds.  But I haven’t had any days without pain for a long time.  Since … I can’t remember when.”

I fidgeted thoughtfully for a moment, then remembered to make some conversational eye contact and added, “The thing that’s hard to explain about ‘pain management’ is that it’s not that I ‘get used to the pain’, but that I get used to ‘being in pain’.  It makes it too easy to overwork, and not get enough rest, and get sick easier.”

We chatted a bit more about other stuff in life, and bid our farewells.  Alas, she had nothing to offer by way of remedy for the situation, aside from reminding me to get some sleep.  She’s not my medic; she’s my student.

But she did me a favour anyway by asking me a question that gave me the opportunity to re-assess and get a better perspective on my life.

Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

Comfort-able

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

shrinking

My Things To Do list has lain dormant in my purse all week. Not for having forgotten which Very Safe Place that I stuck it into. Not for having too few things to do to bother writing them down (as if).

Rather, because there is so little I can get done in a day. The effective list of Things To Do is reduced to:
dressing and eating breakfast,
working at job #1,
eating lunch and grading papers for job #2,
working at job #1,
eating dinner and preparing something like a lesson for job #2,
teaching job #2,
doing a bit more preparing something like a lesson,
and crashing in bed.

On Saturdays there are exciting departures from this plan: Read the rest of this entry »

Meet the Zebras

A large, black and white striped butterfly nectaring no a purple coneflower

A large, black and white striped butterfly nectaring on a purple coneflower

In the field of medicine, there’s a saying that, “If you hear hoofbeats, think horses, not zebras.” This means that although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will resolve to common causes (“horses”).

Which of course does not mean that one won’t encounter “zebras”.  Once a very great while there will be someone with the rare genetic disorder or unusual psychological glitch.  Mayhap even someone with several rare genetic disorders and unusual psychological glitches!  This insect profile post is dedicated to all you readers out there who are “zebras”.  (Wave to the crowd folks; let them know that “rare” is not synonymous with “you’ll never meet them”.)

Like medical zebras, Zebra Swallowtails (Papilionidae: Eurytides marcellus) are rare amongst butterflies.  They are not endangered, but unlike Monarchs, Cabbage Whites or Painted Ladies, you don’t see these zebras very often.  This is a big butterfly, about 6-9 cm (2.5-3.5″) wide.  They live in the eastern half of North America, and can be found wafting around the borders between fields and woods or streams.  The reason such a large and striking butterfly lives in such obscurity is not for limitations in ecotone; it will live most anywhere but montane and alpine zones. It’s not even limited by breeding season; there are two broods in northern populations, and four broods in southern.

Rather, they are rare because the larvae are monophagous (a fancy word for “only eats one kind of thing” — a parent might lament, “My child is seemingly monophagous upon Goldfish crackers”).  Well, plenty of catepillars out there are picky.  But Zebra Swallowtail ‘pillars will only eat the leaves of pawpaw trees (Asimina triloba) and other species of the genus.  Unlike the ubiquitous callery flowering pear trees or purple barberry shrubs, homeowners and parks managers do not go around planting pawpaws.  Unacommodated by the lack of host plants, the butterflies spend their lives beyond the outskirts of the developed world. Only butterfly enthusiasts and rare fruit fanciers who go around planting pawpaws Just Because, or residents of diversified country wilds will have much hope of seeing zebras.

It’s not that medical or butterfly zebras don’t exist, but that you have to know where to find them.  You also have to be willing to support their particular needs to have the opportunity to get to know them.  But either one of those conditions requires understanding that zebras even exist.  Yes, you might even (gasp!) have one in Your Back Yard!  It’s true.  And now that you have a better search image, I guarantee that you will be much more likely to meet them.

Bits and Pieces

I’ll never earn a Good Blogkeeping Seal of Approval* if I don’t get around to mentioning these diverse pieces of news!

I am remiss in mentioning Greg Williams’ wonderful cartooning work; he does a weekly piece called “Blogjam” for the Tampa Tribune (Florida newspaper), where he illustrates people’s stories as described in their blogs. Recently he did one based up my prosopagnosia page, “I’m Strange, You’re A Stranger”.

There are updates on my Hypermobility page for the curious, including handy-dandy medical information links for those who “Need more input!” (An “Ooh, shiny!” for whomever can name that movie reference?)

The latest Circus of the Spineless is up at the Seeds Aside — my antennae are all a-quiver with excitement. Such great reading for wasting time relaxing after a long day’s work, especially if you are also “feeling sluggish” like some of us.

My mum used to tell the tale that as a mere tot I tried to check out (shoplift) a book of dirty limericks. Of course, everyone assumed that I couldn’t read them … those limericks came back to haunt me when Akusai produced the 87th Skeptic’s Circle: Dirty Limericks Edition.

And just for fun, the connection with Asperger’s has been made before, but A. A. Gill does it best of all.

* No, I don’t think there really is a GBSoA — and I certainly wouldn’t apply for a housekeeping seal with the amount of clutter everywhere from these three dozen ongoing projects!

“Made of Win”

Stupid Human Trick # 6,517: spraining my right ankle while walking on flat pavement into my rheumatologists’s office. Actually, my ankle rolled over sideways and I tried to step onto the dorsal (upper) side of my foot. The good news is that I got it iced immediately. I sat there on the bench seat by the doctor’s desk, one foot on the ground, and the other leg folded sideways with my foot on the bench by my hip. “You really are hypermobile, aren’t you?” she asked.

“Yeah,” I sighed, “hence the sprained ankle and shoulder subluxations and tennis elbow…”

She gave me an extra prescription pad sheet with a list of things to do, including one that said to use a cane. Since I was just about to go on a trip, that sounded like a good precaution. While getting some medication, I bought a new elastic bandage, an ankle wrap, and a cane.

Not just any cane, one with a built-in small compass (cheap, but it works), an equally cheap magnifying site (but I did use it to read a sign I couldn’t decipher otherwise), a wrist strap (an excellent feature, so I don’t leave it somewhere), and best of all, it folds up! This is truly “made of win”, as the kids would say.

The eldest was so impressed that I have been instructed to buy another should they be restocked. I also packed my weight-lifting gloves, as they allow for a better grip on luggage, and even give me a little sun protection: Read the rest of this entry »

In which I am Stiff

It is morning after some afternoon yard work (a couple hours spent lopping back a shrub by 2/3, and then cutting down those branches for pickup), and I am waiting for arthritis medicine to kick in.

Then I realise that it has. Enough time has passed, and this is “better” (at least for the medicinally-mediated improvement). Which-all leaves me wincing, and wiping wet corners of my eyes on my shoulders. I am tearing up less from pain than frustration-with-pain. When I see my rheumatologist in a few weeks, I will have to explain that pain meds are not working so well, as even post-medicated I am in pain much of the time. I cope with it and “keep on truckin’ “, which is not to say that it doesn’t affect me. (I haven’t even been tracking my blood pressure, which I should be doing now that we actually have a mini-clinic on campus.)

Today I am not just creaky and feeling nauseous before breakfast and after breakfast + meds, but I am also stiff. It shows in the halting progress of my first foray down the stairs and the bumbling around the kitchen. (Thank you, hubby, for making the coffee! Again.) I fumble, and more than once drop things, and then in Slow Motion must bend over to retrieve them from the floor. Knees locked, legs straight, I reach down with my fingertips straining to touch the floor and pick up my sock.

Now, you would think that Read the rest of this entry »

Natural Therapy

Last night I was digging through a giant box full of 35mm transparencies (slides) looking for specific pictures for a new class I’m teaching in a couple of weeks. Naturally, the effort took far longer than I anticipated, partly because I kept finding other interesting pictures, such as vacation photos. I finally did find what I was looking for, but once again, it was after midnight before I got to sleep.

One picture was of me back in 2000 when I was building our backyard pond. Kitted out in a tank top, a pair of knee-length boy’s cargo shorts, a pair of leather gloves and my hiking boots, I was hardly a fashion plate. But boy was I buff. I had muscles, and it showed because I was holding a very large chunk of limestone up above waist level. The long rock was about six inches / fifteen centimeters thick and wide, and stood on end it would have reached my hip bone. The piece weighed about 90 pounds / 41 kilos, which is less than I’ve ever weighed as an adult, so hardly something braggable in the world of bench-pressing barbells, but it was still a respectable lunk of solid rock to be schlepping about.

Nowadays the arthritis slows down the yard work considerably. I can’t work as long, and it takes me longer to get going in the morning because I have to eat before taking my meds. Continuing to do some form of weight-bearing exercise is important to avoid the osteoporosis that runs through my maternal line. But I also have to take care to protect my joints against non-Tennis-playing Elbow and the stupid shoulder subluxation.

I have to force myself to work out at home or the gym during the winter. Frankly, this winter I’ve been especially lax in doing so, partly because by the time I get off work I’m so tired and achey I can’t bear to go to the gym.

It’s funny though, how if you have a physical impairment, what would ordinarily be getting exercise somehow gets turned into Receiving Therapy after its trip through the “disability grinder”.

The last time I visited the “Physical Terrorist” was a few years ago when I went to the university clinic for something-or-another. I left with some over-photocopied handouts describing exercises, and a prize (better than any shiny piece of costume jewelry from the dentist’s “treasure chest”), my beloved rice sock for re-heating and draping across sore places.

The PT encouraged me to come back for more therapy, but I found the exercises to be sufficiently effective on my own. I’m not keen on people manipulating my body. Other people think that if my joints can move within the normal range of motion, that I must be okay. But in truth it means that I’m actually injured and stiff because they are reduced in range of motion from my usual hypermobile state. It’s also hard to convince them that I normally have oddly-placed or large bruises about my body, and that I really can’t remember getting them, and that “No, nobody is abusing me, thanks for asking.”

Any kind of therapeutic exercise is more fun, easier to do, more beneficial, and more likely to be engaged in and maintained if it is combined with one’s daily activities, rather than done strictly as PT or gym exercises. I continue to schlep my briefcase or luggage-size tote with my teaching references around campus (frequently switching which side I’m carrying it on), and try to get in as many staircases as the routes require during the day.

The turnabout is that even dull exercises can be more inspired or inspiring if I think of them as antecedants for doing the fun stuff. I need to start stretching out and doing dumbbell reps again, because spring lurks around the corner.

The daffodils are poking up through the mud and leaf litter, reminding me that I need to rake. And once gardening season starts, I can get in lots of stretching, range of motion exercise, weight-lifting, deep knee bends et cetera, just from fun things like turning over and hauling compost, digging, planting, weeding, deadheading and all those other fun “chores”.

I’ll just be doing them for an hour at a time now, instead of eight hours solid. I hear it’s warmish and sunny tomorrow …

Random bits from bed (thoughts before arising)

I tossed and turned all night.

Well, not really. Tossing and turning implies far more bounciness and energetic mobility than I had. Rather, I woke up every couple hours when it was time to shift to another sleeping position. There were no comfortable positions to be had (there never really are), but with enough pyjama-straightening to remove the deadly little wrinkles pinned under my hips and shoulders, by shifting the spare pillows to completely pad between my bony knees and feet, and plumping up my head pillow again, I could reach a level of acceptable discomfort and fall asleep again.

I get plenty of REM sleep; in fact, it seems like all I do is dream because any disturbance wakes me from a dream. (An article in Scientific American describes just how more interrupted sleep results in longer and more intense dream periods.) I just don’t know that I’m getting enough deep, restful sleep. When I’m sick I’ll be in bed for eight to ten hours more-or-less sleeping, but I still seem generally stuck at six-hour nights. I can’t remember the last time I slept through the night, but it was several years ago.

The good news is that Read the rest of this entry »

Weights and Balances

Today I joined hubby for a short visit to the health club. I’d not been in a large number of months, but decided that this would be a good opportunity to scope things out with regards to what they had. I need to get back into the habit of getting some regular exercise. I figured that scoping things out ahead of time and figuring out what I needed, and when I was going to go, would be a good way of easing back into the habit. Why wait until New Year’s Day to make a resolution?

There are a number of good reasons for me to get some exercise, but an equally weighty number of reasons why it’s been increasingly difficult to do so. Read the rest of this entry »

It’s a Real Pain

Bath time. I steady my balance by holding the sides of the tub, and ease myself into the hot water. There I play “What’s My Bruise”, trying to figure out how I acquired all the motley souvenirs. There’s a large turquoise blodge shaped like Antarctica on the top of my right foot, a constellation of dark purple marks on my left knee, several random fading-green spots on my forearms, various dull plum-coloured dings on my thighs and calves, and a deep tissue olive-green zone the covers most of the fleshy area between my left thumb and the back of my hand. As usual, I have no idea how or when these happened. I bruise easily, and between my joint hypermobility and crappy proprioception I’m always bumping into things. There’s nothing to do about the bruises, but I monitor them to make sure that things do heal up and disappear within a couple of weeks (my mother had diabetes), and to watch for infections (like the ingrown toenail cellulitis for which I just finished a round of antibiotics). And so it goes.

Unless you have a rare CIP mutation (Cogenital Insensitivity to Pain), you’re familiar with aches. We’ve all experienced the ordinary headache, the run-of-the-mill bruised limb, the annoying paper cut. These “owie-boo-boos” are annoying and ephemeral. Many people experience severe but thankfully brief* pain with childbirth or traumatic events such as broken bones or appendicitis. Yet none of them begin to describe the issues faced by those with chronic pain problems such as arthritis or TMJ, or the re-occurring severe pain of migraines.

We tend to view pain as strictly a physical problem, treated with various analgesics and/or physiotherapies. You hurt, you take treatment, the pain goes away, your wound heals, the event stops. That’s the way it’s supposed to work, and if it doesn’t, then you’re not doing it right. We even have child-birth classes to teach people the “right way” to have pain (yes, I say “people” because their partners are there to learn how to reinforce the appropriate responses during L&D).

But chronic and re-occurring severe pains don’t follow that socio-medical model. Read the rest of this entry »

Small Comforts

“You know when you have a few good days and you begin to wonder whether the bad days could have possibly been as bad you imagined they were and then you have a few bad days and wonder how on Earth you ever were able to do the things you did on the good days? No? Well, I do.” ~ The Goldfish

It’s a pain. No, it’s many pains.

I’m getting over a migraine, which makes me just generally tired and gives me brief flashes of visual auras, pain twinges, inconsistent light sensitivity, and word retrieval problems when speaking. This rather much overshadows the arthritis business. I’m also trying to get a bunch of errands done and phone calls made prior to packing for a trip, which unto themselves are stressful activities. I also forgot to take my ADHD med this morning, so I’ve been in a what-was-I-going-to-do? fog all day long as well, above and beyond everything else. “Ain’t we got fun.”

But after I tracked down two cats and took them to the vet (putting the suddenly-hexadecimal cat into the carrier is always entertaining – picture here ), I went for my semi-annual tooth cleaning. I have no idea if I’ve had this particular dental hygienist before, having no memory at all for faces not seen daily, but she was nice enough to shut the window blinds for me on account of my migraine “hangover”. I was also due for some dental x-rays (roentgenograms), so the she draped me with the lead apron. Although having the bite-wings stuck inside my mouth is less than fun, I always enjoy the comforting pressure of the lead apron.

In fact, years ago when I realised that a lead apron was such a fabulous deep pressure aide, I got one from a retired dentist. When I stagger to bed with an incipient migraine, I compose myself in the dark room and drape it across my thorax. I’ve also used it on nights when I just can’t seem to settle down because I feel twitchy on the outside. The lead drape is one of several small comforts that I have found useful. Everyone deals with stress in their life, both the eustresses (the good sorts that help “push” us in beneficial ways) and the distresses (the bad sort, which need no further introduction). But we all differ in the things we are stressed by, and how those stresses affect us. My distress-reduction is accomplished by several means. Read the rest of this entry »

Oops. Ouch.

Here’s one of those quandaries: Which is worse, accidenting one’s self frequently, or not responding well to anæsthetic?

It’s not that I react badly to local/topical anæsthetic, just that I don’t react to it much at all. But I’m getting ahead of myself. Which is not unusual because I’m often unsure of where I am in space.

Being chronically uncoördinated is technically known Read the rest of this entry »