Category: Excuse of the Week

Dysautonomia Awareness: You’re Not Insane, You Just Feel That Way

It’s Dysautonomia Awareness month, and I’m hereby aware.  Dr. Google can tell you all sorts of things, but my favorite link is to Living with Bob, FYI slight language warning (which I don’t approve of), but I like the assortment of information.  When you visit Dr. Google and the major advocacy organizations, what you mostly hear about is POTS, to the point that some outfits equate the two.  That’s sort of like equating “leg pain” with “broken femur.”

[FYI: You don’t want POTS.  Or a broken femur.]

Dysautonomia, aka Autonomic Dysfunction, is when your autonomic nervous system doesn’t work right.  That’s the part of your nervous system that does all the things you don’t have to think about and really don’t control.  Any underlying illness or injury that affects the nervous system can cause autonomic dysfunction (MS, diabetes, lupus, spinal cord injury, etc.), and there are an assortment of disorders that have autonomic dysfunction as their chief complaint.

Since blogging is all about self-absorption, let’s talk about me.

Complaints, Complaints, Complaints

The most dramatic and pressing element of my dysautonomia is Inappropriate Sinus Tachycardia, which drama longtime readers know all about, check the archives.  What happens is that on exertion my heart rate accelerates excessively, which leads to dramatic shortness of breath and an inability to do, well, anything.  Conveniently I’m one of the people who responds very, very well to a low-dose beta blocker, so the symptoms are under control.

Curiously, this study from 1966 recreated exactly what my heart rate does.  The difference between the “control” and “parasympathetic blockade” heart rates is pretty much me before IST vs. with IST. “Double blockade” is what I look like with IST controlled by a beta-blocker.

In everyday terms: One day on vacation last spring I forgot to take the beta blocker.  After a leisurely breakfast, about noonish I started getting ready to go out and do something fun.  Brushing teeth? HR of 120.  In the shower? 140.  In contrast, on the beta blocker, 120 would be my heart rate having just jogged up two flights of stairs carrying a full bookbag.

On the vacation story, once I noticed I’d obviously forgotten something, I went and took the beta blocker and was fine to go out and be a normal active person traipsing around the city all afternoon.

One of the things that people will say about these kinds of idiopathic tachycardias is that they must be due to “deconditioning.”  When I first started with severe shortness of breath on exertion, I had just gotten home from a trip up north where I’d spent one morning climbing up and down a snowy hill sledding with the kids, no problems.  You don’t decondition that quickly.  Likewise, once I was diagnosed and treated, I went in the space of an hour (time it takes to make propranolol start working) from unable to walk an 1/8th of a mile slowly to doing laps at the school walking track as quickly and for as long as I liked.

I assure you that if you are so deconditioned that you can’t walk an 1/8th of a mile, the lowest available dose of a beta blocker will not instantly improve your conditioning by a factor of twenty. Dysautonomia is not deconditiong.

Stupid, Annoying, Incurable

Because the tachycardia responds so well to treatment, it’s not a significant problem as long as I’ve got access to the drugs.  I would say the most debilitating and limiting symptom I have is that I will, intermittently, get lightheaded when talking.

It’s a sensation a lot like hyperventilation, and the effect is similarly cumulative — you can handle some amount of it, but eventually you have to quit.  It’s a fairly common complaint among people who have POTS (which I don’t have, but which is a different tachycardia), and one that there is basically no discussion of in the literature that I can find.

I manage this symptom by daily reconsidering whether maybe I should have been a Carthusian.  Just kidding.  I’ve never even had chartreuse.

What really happens is that if I’m particularly feeling it, I just avoid talking to people.  This is a tad socially awkward.  Alternately, I talk to people and secretly resent them for being a person that I’m talking to (tad immature); or I feel guilty for making my brain hurt having so much fun (tad scrupulous), because it does take a toll on my ability to do other things as the day wears on.

Much like the way people who get migraines or stomach aches don’t necessarily have those symptoms 24/7, sometimes I’m just fine.  So that’s even more socially awkward, because one day I might be, say, subbing teaching a class with no difficulties, and another day I might want to hide from people because they persist with this crazy idea about talking to each other.

On a medium day I can get away with pacing myself.  I do better if I’m the one choosing how quickly I talk and if I’m alternating with someone else. So a phone call to my grandmother works great; group Rosary not so much. On a medium day I might sing most of the best two hymns at church, but with a certain amount of lip-syncing interspersed because the pace is still more than the brain can take.

Simple, Manageable Paths to Insanity

The reason I’m writing today, mid-awareness-month, is not just because I’m procrastinating on other work (true) but because I was made suddenly re-aware of one of last year’s most interesting developments.

What’s happened is that we are now, thank you Hurricane Matthew, having beautiful southern autumn weather.  Lows in the 50’s, highs in the 70’s, huge clear blue skys, low humidity, you can’t ask for anything more idyllic.  This morning I dropped off the 5th grader at school and then picked up a few groceries on the way home, perfectly comfortable in jeans and a long-sleeved t-shirt.  Sitting in the shade in the early morning, you wanted a flannel shirt — remember it was in the 90’s a week ago, so we southerners get a flannel shirt pass, thanks.

But let me emphasize: This weather is PERFECTLY COMFORTABLE.  Important to the story.

So anyway, later in the day I laid down for a quick nap (because: procrastination makes me sleepy, ha).  The bedroom was a comfortable 70 degrees.  I’m wearing jeans, socks, long sleeve t-shirt, flannel shirt.  All clothing is that perfect fit for temperature regulation, not-to-tight-not-too-loose.  No gaps at the waist or ankles or anything.  On top of this, because we humans cool down when we sleep, I pull on blankets.

Not just any blankets: A down comforter, and on top of that a synthetic comforter.  You are now thinking to yourself this girl’s going to wake up a sweaty mess in half an hour.

Nope.  It’s fall!  We’re down to a brisk SEVENTY DEGREES!  So it’s time to resume . . . the thing where we wake up shivering immediately upon falling asleep.

No, Really, I Can Do Winter

I spent many decades camping in the winter.  When the huge ice storm hit twelve years ago, and we had no power for a week and the house was 45 degrees inside?  No problem.  I won’t say I enjoyed it, but we all slept great.  I know how to sleep in cold weather.

What’s happening with the dysautonomia is that my body temperature drops too quickly when I fall asleep.  In the summer, it’s not a problem — hence the fact that I had two comforters on the bed even though it was in the 90’s last week.  Humans intuitively grab the amount of bedding they need, that’s a basic survival instinct.

I don’t have persistent hypothermia (which happens to some people).  My body will eventually warm up the clothing and bedding and I’ll be just fine all night.  But because of the steep temperature drop on falling asleep, I’ll go through three or four attempts at sleeping before I can stay asleep.

This will make you feel like an insane person.

You will remember that sometimes when it’s very cold, people will wake up in the middle of the night looking for more blankets.  And then you will have to remind yourself: Those people aren’t going from perfectly-comfortable to body-shaking-shivering in the minute it takes to drift off to sleep.  Under a lot of blankets.  When it is seventy degrees in the room.

The Insanity of Dysautonomia

The maddening part of autonomic dysfunction is that every thing that happens is something that your body might also do under normal circumstances.  People get hot or cold.  Heart rates go up or down.  Something like getting dizzy talking or singing?  Hyperventilation happens.  You have to remind yourself that gosh, no one else in church is begging the organist to slow down so we don’t all pass out.  Every. Single. Hymn. in the hymnal isn’t some manic composer’s effort to see how many people have the breath to pull it off.

It’s not normal for an ordinary Sunday service to feel like some kind of survival-themed reality show.  Last Congregant Standing — Do You Have What It Takes To Sing All Four Verses?!!

But humans adapt marvelously, and this only makes you feel crazier.  You get used to the idea of needing an external heat source* in order to not be shivering on a seventy degree day.  You get used to the idea of assessing how much conversation your brain can take before you really have to stop.  You lose track of the fact that other people aren’t constantly managing all this weird stuff.

There’s more to complain about, but I’ll stop there.  To summarize: Dysautonomia is a condition whereby your autonomic nervous system has gone off its rocker and is trying to take you with it.  The end.

File:Stories for the household (1889) (14772566743).jpg

Artwork courtesy of Wikimedia [Public Domain]

 

*For an external heat source, think electric blanket or heated mattress pad.  Basically it converts your autumnal weather back into summer in the area adjacent to your body.  If you also happen to need an extra two hours of sleep in the winter months because of the energy it takes to keep your body warm, if you religiously use such a heat source whenever you are sitting or lying still, it can buy you a couple more hours of wakefulness.

Related: Inside Tired World

A Thing You Should Do, and the Jen Fitz Mid-Summer Update

What’s with the radio silence?  Let me just tell you.

But first, the reason I’m breaking it: My friend Sarah Reinhard asked me to blog on Theology of the Body stuff in the lead-up to this fall’s Theology of the Body Congress, which you should attend if you have the opportunity.  The line-up of speakers is stellar, and yes I would go myself if I possibly could.  So put that on your calendar.

The expression Theology of the Body among Catholics is a bit of a code word for, “Let’s talk about sex now.”  I usually stick to code on these things.  But there’s more to your body than just the parts and processes that make you a boy or a girl, as Susan Windley-Daoust will remind you periodically.  I’m going to write not-about-sex today, and come back to racier topics here and over at Patheos in the next few weeks.

***

Now back on topic.  A little Applied Theology and the answer to the question, “Why on earth has Jen Fitz completely dropped off the internet?”

Short answer is: I’m not doing as well, physically, as I would need to be doing in order to both take care of my primary vocation (marriage, parenthood) and this secondary vocation as a writer.  So first things get to be first, and the rest has to wait.

File:Souq Waqif, Doha, Catar, 2013-08-05, DD 107.JPG
I needed a picture that would preview well. I love this one. It’s by: Diego Delso, Wikimedia Commons, License CC-BY-SA 3.0. Click on the image to see all the details.

The very, very, long answer:

But here is something completely cool, because God is like this: Just in time for me to have something someone really wants me to write about (instead of just me running my mouth off, which is my usual niche), I can totally sit at the computer and not be light-headed!  Isn’t that cool?!  I keep forgetting this new fact, and thus my e-mail is way behind.  June was a pretty long month, computing-wise.

I theorize in part it was positional, which means I probably need to rearrange the workstation.  Here’s an interesting link about cartoid sinus hypersensitivity, which might cause you to suspect I’m really an old man just posing as a pleasantly-plump middle-aged housewife, but you’ve seen the photos, so whom do you believe? Sports Illustrated or my cartoid sinus barocepter? Anyway, my parlor-trick for June was that I could drop my pulse twenty points just by, um, taking my pulse.  No true cartoid sinus massage needed, just touch the thing.

It quit doing that, though, as far as I can tell.

Some other interesting body-things for this summer:

Dang it I can’t talk anymore again.  The speaking-part works fine, don’t panic, it’s the getting light-headed while I do it that is at about 80% of the time.  This is pretty common in tachycardia-themed autonomic dysfunction. (POTS people talk about this all the time in conversation, even though it never seems to make any list of medical descriptions, not sure why there’s that disconnect in the medical literature.)  80% isn’t 100%.  On a good day I’m completely normal, on a lousy day I’ve given up even lip-syncing at Mass.

–> Autonomic dysfunction creates these weird eddies of backward expectations.  Mass is pretty much my least pleasant activity, because it involves sitting still then standing still, with positional head changes (bad — I keep being reminded not to bow the head, just don’t do it), combined with talking.  So on a miserable Sunday I can feel extremely overwhelmingly bad by the end of the hour.  But because the problem is not at all with my heart’s ability to pump blood or my blood’s ability to hold oxygen, I’m the person who’s desperate to lay down while standing still, but will then escape without difficulty at full speed to the car and feel better as a result of the vigorous activity.

Basically I have this cardiovascular problem that makes being still feel worse and being active feel better.

Except for some other problems.

The stamina isn’t there.  This is a thing that keeps confusing me, because I swing all day long between being really quite fit and functional and being completely incapacitated with fatigue.  Here are a series of excerpts from a description I came across that describes me dead-on:

Patients might be able to muster adequate energy for periods of time but it is usually short-lived and they tire quickly, not unlike a battery that discharges too rapidly. . . . A period of rest or sleep is generally required before energy levels are restored. Following rest a patient may demonstrate apparently normal stamina and a clinician will not detect weakness on examination . . . .

This is me completely: Do something, then flop on the floor utterly exhausted, and then in a bit I’m fine again.  Happens hour-by-hour, and then also from day-to-day.  More on that below.

I don’t know whether or not I have a mitochondrial disorder (very difficult to diagnose) but I get this, too:

Impaired oxidative phosphorylation  [don’t know my cause] not only causes muscle fatigue but also muscle cramping with or without tenderness, or a feeling of extreme heaviness in the muscles. These symptoms are especially severe in those muscle groups being used, and patients often complain of discomfort in the legs or even muscle spasms.The discomfort may be felt immediately following the activity or later on, waking up the patient from sleep.

Funny story: I mentioned to a relatively new acquaintance that I’m prone to decrepitude, and the question she asked was, “So are you basically in pain all the time?”

The answer is that at this writing, no I am not.  But I have picked up what is turning out to be mild-but-intractable intermittent pain (in my legs, if you’re curious), and yes it keeps me from sleeping well, and yes, I’ve tried all the things, and the things help quite a lot.  (Other than deep breathing to relax, like the kind that works so well for childbirth — used to be my go-to, but now it just gives me a headache.  Which stinks, because it’s a good method if your autonomic nervous system functions properly.) But I think it’s very funny because the words “every day” and “intractable” do apply even if the pain itself is not very bad.  So if you use those adjectives, it sounds way worse than it is.   I think most other people can also use those adjectives.

[By “intractable” I mean “intractable using means that don’t require a prescription.”  I haven’t gotten around to being bothered enough to plead for the good drugs.  So no, nothing to worry about at this time.]

And this cracked me up, because every receptionist I’ve ever met knows this about me now:

Exercise intolerance is not restricted to the large muscle groups in the body but can also involve the small muscles. Writing can be a challenge; too much writing leads to fatigue and/or cramping or spasms. The quality of penmanship can be observed to deteriorate over the course of a writing assignment with letter formation becoming more erratic and messy.

This is why you don’t want to receive handwritten correspondence from me. Nothing new, story of my life.  Interestingly, I always take handwritten notes in classes, and if I don’t have a computer I’ll do my other writing longhand — but the writing degenerates fast into this baseline scrawl that’s just barely legible to me, and only because I already know what’s written there.  Once it gets down to worst-level, I can sustain it for a long time.

And one last one which caught my attention, from the same source:

. . . Debilitating fatigue can occur with infectious illnesses, may outlast the other symptoms of the infection, and the recovery time can be very prolonged.

This thing I hate.  I never know whether a cold is going to cost me a few days or six weeks.  Weirdly, I used to go into nasty bronchitis every few years following a cold, and knock on wood that hasn’t been a problem lately.  I just get all the fatigue.  (Um, and I always have a cough.  So, gosh, I don’t know. Don’t make me laugh and we’re good.)

Exercise does help.  The supreme challenge is in figuring out how much to do.  Too little, and you sleep poorly and lose conditioning. Too much, unfortunately, is not evident during the exercise.  I can work out and feel great and be sure I’ve figured out a great balance between rest and exercise, and then at the end of the week completely collapse and require days and days of recovery before I’m functional again.

–> The convenient thing here is that I can in fact borrow time.  If I know I want to be up for something, I can plan ahead, build up reserves, stretch them during the event through the clever use of pharmaceuticals, and plan to pay back afterwards.  Difficulty being that the mortgage interest is steep.  There’s no getting more out of the body than it has to give.

The inconvenience is that all the things I do are exercise, but some exercises are more valuable than others.  So if I want to work on my core muscle strength, which is key to preventing the injuries to which I am prone, then I have to not work on helping you out with that thing you wanted me to do.  Your thing is also exercise, but it’s a lower priority exercises, so out it goes.

Yes, I tried that thing you suggested.  Not being snarky there.  I’ve had a number of good friends recommend possible ways to improve the situation, and some of the ideas have been very helpful. (Even if the idea came after I’d already come across that suggestion and tried it, and thus could immediately report, “Yes! Thanks! That does help! Excellent idea, glad you mentioned it!”)  Some things people have suggested and that I tried did not help for the reason proposed (I am not, for example, allergic to wheat) but do help for a different reason (minimizing wheat products makes more room in the diet for intensely potassium-rich foods, which help a ton).

So a thing that’s got me occupied this summer is obsessively managing all the micro-factors that can make the situation as better as possible.  I think (but can’t be certain) that I’ve got the diet tuned to a spot where I can happily live off the things I seem to do best with, but also get away with deviating from the Ideal Thing at food-themed social events and no disaster ensues.  If all that proves to be true, I’ll chat about it later.  It might be just lucky coincidence.

Meanwhile, here’s the surprise of the summer:

Heat intolerance!

It took me a long, long time to figure this out.  Here’s the difficulty: The heat doesn’t bother me.

I live in a warm climate.  I don’t mind being sweaty.  I know how to dress for the heat, how to acclimatize as the hot season arrives, and how to get the most use out of a hot day.   Since I cultivated these skills, I’ve never had any difficulty with the heat whatsoever, other than some mild irritation about the truly obnoxious portion of sauna-season, which you just have to deal with and move on.   I even know the trick about watching for Seasonal Affective Disorder when the heat starts getting so annoying you hide indoors despite yourself.  (Same solution as per winter – bright light & vitamin D).

The problem I had in figuring out this one is that (a) I’m still functional above the temperatures when people from up north start whining profusely, (b) I still don’t mind the heat or being hot, and (c) since I have any number of other things that also make me feel terrible, it’s not like I was able to say to myself, “Gee, I feel wonderful all the time except if I’m someplace hot.”

It’s a perfectly manageable problem, it just came as a bit of a surprise.  Amusingly, my cold intolerance is getting worse, too.

The hardest thing: Not being able to concentrate.  Since I’m a master-complainer, I don’t know that we’d call this my “chief complaint.”  But it’s certainly my loudest.  As in: If I told you I NEEDED the house to be QUIET so I could do this thing, that’s what I meant so please go OUTSIDE.  This is the #1 reason I haven’t been writing.  I’m home all day with four kids.  There’s noise.  There are interruptions. Note that my entire career as a writer has been carried out under these exact same conditions.

What happens therefore is that I drift through the day doing tasks that are super-easy, and then if I find myself in some unexpected situation like trying to cook while other people are in the room, it’s alarming to everyone just how badly things go (until I communicate my distress so emphatically that everyone goes and hides).  And then I go back to easy things, and wonder why things that take my full attention just never get done.

So that’s the answer to the perennial, “How’s it going, Jen?” topic on this blog.   I’ll emphasize here that as much I just used my crotchety trans-old lady powers to moan about the ailment for very many words, it’s not as bad as all that.  But here’s a story that sort of sums up the situation:

Yesterday I was halfway through this post when I had to leave and get ready to go to a social thing at the lake.  Sunday had been horrible, Monday was not that great, and Tuesday wasn’t impressing me.  I was only going to this thing because (a) I wanted to go to it, and (b) my kids really, really, really wanted to go to it, and they’d done all the things I told them they had to do if they wanted to go.

So we went.  And I was fine.  Dreamy fine.  No problems.  Felt completely normal for the full three hours I was there, conversing, walking around, standing around, watching kids, etc.  Some of the time, I’m completely, totally fine.

Moments like that can make you think you’re crazy.  Maybe I just need to relax at the lake more often?  Two reality checks:

  • Part of being fine was that I aggressively managed as many factors (fluid intake, electrolytes, staying out of the direct sun) as I could.
  • If it comes as a surprise to you that you went to an enjoyable, relaxing, time-limited social event and had no experience of illness during all three hours, probably the fact that this was an unexpected occurrence tells you something.

So we can add this to my list of signs something is not normal: If you get to where it’s a surprising occurrence when you feel well, we can infer that there’s a problem.

And dang my legs were like lead when I dropped a kid off at VBS this morning.  So yeah, CAWOG.  I’m rolling with it.

I figured since this was the All About Me post, if you made it this far you’re the type of person who wants to see my new haircut.  (Hi Mom!) The third one is me posing in front of the dog’s blanket, which is still hanging up to dry on the screen porch a week after I told a kid to put it there.  I guess it’s dry now.  But I needed the contrast because I kept getting photos where the new haircut looked exactly like the SI photo shoot.

So How’s it Going, Jen? Thermostat Edition

True story: This update is prompted by a combination of ennui and reading about people’s winter thermostat settings.

So everything is holding steady, which is good.  Miracle drug still doing its miracle thing.  I got hold of a fitness tracker this winter and have started watching the daily exertion count, which makes it much easier to manage my activity level, but also maybe a little more depressing (she said buoyantly).  Basically the pace of six days on, one day off works pretty well, as long as the six days are “average”.   I’m getting trained to take a second rest day preemptively if I know I can’t afford to bonk later in the week.

What doesn’t work: Continuing with a few extra average days, because you feel fine and anyway there are important things happening . . . talk about high-interest loans.  Try to skip one rest day, and find your brain slowly draining away during the last couple “just one more normal day” days, and then your body is utterly laid out, as if you had the flu only you did not have the flu, for five days.  Try to gain one day, lose five, and also alienate a few folks by your lousy social skills during the pre-collapse decline. Yeah, that was a neat experiment.

So that trained me to be aggressive about managing rest, and overall it was a beneficial experience because without the certainty that rest is a non-negotiable, it would be much harder to set the boundaries.  Also, I discovered all these interesting BBC miniseries, so it worked out.  Essentially I can tell how sick I am by how interested I am in television.  Healthy = Zero Interest.  Medium = I’d rather be writing.  Desperate = Is There a Law that Brendan Coyle has to be in Every British Period Drama Ever Made Since 1991?

The surreal part of all this is that I find myself thinking, about myself, Well, um you don’t look sick to me.  That’s a good thing (yay modern medicine) because pallor and gasping and feeling perpetually buzzed is overrated. The new normal is operating like a completely normal person, and without any particular difficulty, other than that normal happens to be at the limit of my physical capacity. But that at-the-limit situation doesn’t how I’d think: It’s no problem at all at any given moment to quick sprint across the yard, or take a long walk, or haul boxes of stuff in and out of the truck, and so everything seems completely not-sick. The hitch is in the number of days I can pull it off for, before I find myself suddenly struck by the Useless Fairy because I used up my minutes.

The other confusing thing is that if I’m on an even keel, things that other people find difficult, like spitting out massive quantities of punditry, are easy.  Effortless.  Which makes it seem like I’m a person of leisure and boundless productivity, when what I’m actually doing is preventing myself from going absolutely mad while I ration the physical exertion like an exercise miser.

I think that’s what it is: Being actively sick was like being exertion-destitute.  Now I’m upgraded to the exertion counterpart to living on a very frugal budget: It isn’t that you can’t live on it, and have nice things and go places and all that; it’s that in order to make normal life happen without careening from crisis to crisis, you have to spend your limited resources very carefully.

***

Oh, so the thermostat story: We’re the kind of people who don’t turn up the heat in the winter.  Normal winter thermostat settting was low sixties during the day, down to 55 at night (if it got so cold indoors, which is only in the depth of winter), and with a little blip up to 65 in the morning during shower-time.  Also we’d push it up over 65 if guests came over, because people don’t always dress for winter during winter.  We have a small wood stove in the living room that lets us do the cozy-around-the-fire thing in the evening if we want to as well.

Seemed to us like a fairly moderate regime, far less rigorous than the norm throughout the bulk of human history, but perfectly manageable even living in one of these societies where you’re expected to engage in full-immersion bathing every single day of the year, no matter how cold it is outside, thank goodness for hot water heaters.  (I don’t mind a hot shower nor the benefits of obsessive hygiene, this works out for me, product of my time as I am.)

But what happened was that as soon as the house got cold, I completely turned into a slug.  The new-normal wasn’t sustainable.  I theorized after a little research that since I was already living at the limits of my endurance (which sounds more dramatic than it is, but still, is the case), the extra load of trying to keep the body warm was pushing me over the edge.  I set the thermostat to “hold temp” at 65 night and day, and sure enough the body reverted to its normal cycle of productivity.

So now when I see people talk about thermostat settings, I have a whole new layer of curmudgeonly thoughts that I don’t share.  To summarize: You don’t need to turn the heat up, unless you do.

Update: What is wrong with people?

The answer to, “How’s it going, Jen?” remains, “Pretty well, thanks!”  I resurrected the Nine Annoying Things Novena over at the blorg last week, and the pray-ers did well.  Hence today’s story:

So I go see Dr. Maybe yesterday, and they did the dreaded Six Minute Walk.  And here is the very, very, What is wrong with people? situation: I did almost as well as predicted.

Seriously?  Is this really all they expect out of pleasantly-plump 40-somethings?  You’re kidding me.

You do the walk with a pulse oximeter, which means you can cheat and watch your heart rate.  This is handy if you are the kind of person who knows at about what heart rate the gasping kicks in (see archives below for the secret), and thus you can maximize your distance by walking right at that special speed where you’re coughing a bit and your head feels like you just tossed back two glasses of champagne on an empty stomach, but hey, you aren’t going to faint, and even though death feels like the perfect next step, you can do it for six minutes.  Or at least, you can do it that long if a stern nurse in pink scrubs gives you a face like she’ll spank you if you quit early.

It appears the pulmonologists aren’t big believers in pedestrian transportation.

***

Anyhow, I like the new guy, whose brain jumps around so much I finally pulled out a notebook and made a list of all the tests and appointments he was rattling off, because I had a feeling one or two might get lost in the shuffle if no one wrote them down, stat.

Ruled out again this morning — for good, this time? — pulmonary embolisms.  Sent away three vials of blood — I’m not sure he’s quite to the point of looking for tropical diseases (I’ve never been to the tropics), but he’s almost there.  More interesting tests coming along soon, looking for weird variants on regular asthma and exercise-induced asthma, and also he’s going to see if he can get my heart rate up high enough (on a treadmill, not with those evil chemicals) that the O2 levels drop, or something else interesting happens that gives us a clue.

We’re having real problems with finding clues.  The trouble we’re having is that I’m dreadfully healthy for someone who’s sucking wind and coughing while ambling at grocery-store pace, minus the cart.

***

Blorging over the past couple weeks, for those who don’t subscribe:

May 7, 2014 Religion is about Reality – and so is the Black Mass  In which someone in the combox accuses me of “shooting off my mouth”.  What exactly is a blog for, if not that?

May 6, 2014 It’s Not Friendship if it Can’t Withstand Disagreement Because I have the coolest friends.  Yes I do.

May 5, 2014 What I Write, Why I Write, How I Write . . . #mywritingprocess  This is the truth, but I’m going to reveal more details at CWG later this month.

May 5, 2014 Tell Me About Your Favorite Homeschooling Conference @CatholicMom.com  Listen, if you know about a good homeschooling conference, go over the link in this post and leave a comment.  I can’t believe no one did this, even after I bumped the CMom post to two different conference-hosts that I knew about.  Sheesh.

May 5, 2014 Inside the Glamorous World of Religion Blogging – Parody for the 5th Blorgiversary, featuring a video of me making everyone else seem as glamorous as Jen Fulwiler.

May 3, 2014 Guns in Church: The Divide Boils Down to Subsidiarity – I don’t much write about gun stuff.  But when the Archbishop of Gunlandia does something to tick off all his redneck parishioners, someone has to get out some catechism quotes, right?  FYI – post includes a link to my A/C article where I say there, concisely, what I’ve said here, verbosely: This is a topic on which Catholics of good will can disagree, and catechists need to leave their agendas at home.

May 2, 2014 Pomp without Vanity: A True Story from a Parish Photo Directory – My kid is as cool as Fr. Longenecker, and much, much prettier.

May 1, 2014 Fun Stuff: Beautification Claws From the Case Files of DragonEye, PI – Free short story. Catholic dragon.

May 1, 2014 Tried and True Ways to Eliminate People With Disabilities #BADD2014 – Review of what I blogged for BADD here last year.  Because it’s still true.  Quit trying to kill the people who bother you.

April 30, 2014 Something Fun: Armored Combat League World Championship May 1 – 3 – Because I have the coolest friends.  Have I mentioned that?

April 30, 2014 Just Say No to Needy Busybodies

April 29, 2014 Heart Rate Training for Fitness in Chronic Illness – This is actually a useful post.  It’s how I managed to nearly pass the 6-minute walk, despite being seriously seriously not well.  And if I’d taken the walk two days earlier, I would’ve aced it out of sheer racing-preparation common sense.

April 29, 2014 Mid-Easter Evangelization: Time for an Egg Hunt! – Link to my column at NE, which got picked up as a reprint by at least one parish bulletin.  I can die happy now.  I have succeeded as a Catholic writer.

April 28, 2014 Trusting God When Life Isn’t Easy – Link to Pauline Media’s brand new, free, digital magazine.  I wrote one of the articles in it.

April 28, 2014 Midlands Homeschool Convention – Last Day for Discounted Registration – Your one and only chance to see me speak in 2014.  Turn out.  It’s going to be cool.

April 28, 2014 Classroom Management for Catechists – Spanish Edition for Fall 2014 – I do a happy dance.

April 26, 2014 Why is Obedience a Virtue?

April 25, 2014 Real Life Prayer Gardening  A picture of the dog who keeps my prayer life going.  And my garden.

April 24, 2014 A Deadly Faith – Gospel Reflection @CatholicMom.com – I had forgotten all about writing this, but then I read it, and it was really good.  Surprisingly good.  Follow this to get the link to the CMom piece, and yes pastors, you may run it as a reprint in your bulletin next time Holy Week comes around.  Or whenever.

April 23, 2014 Divine Mercy Sunday – What’s it all about??  – Relevant every day at 3pm.  Or other times you have 7 minutes to spare and your prayer life needs a little something.

Click to read my blog at Patheos

Liturgical Living

Went confession last night, and sneaked over to Mass this morning.  Happy happy.

Kids were off here, there, and everywhere, so SuperHusband sneaked me over to a very good (not expensive, just good) restaurant after confession, and I lasted 2/3rds of dinner before I was ready to go lay down or something.  The poor waitress was mortified, because, sure, the service was slow.  But it wasn’t that slow.

A little PSA . . .

Dear Jennifer,

Today at Mass, the lady in front of me just wouldn’t kneel.  She sat through the entire Mass! Leaning against the wall!  And she hardly said anything out loud, at all!  It’s like she was really tired or something.  There was a big open space in my pew, so I could have scooted over, I suppose, if I wanted to kneel. But it seemed like a much better idea to insist on kneeling right up against her — personal space is so, so, contrary to the spirit of the Gospel, isn’t it?

Please tell me I did the right thing.

Sincerely,

Pious but Clueless

 

Dear Pious,

Personal space is not contrary to the Spirit of the Gospel.  Consider scooting over one space in the pew if the person in front of you is not kneeling for some inexplicable reason.

Jennifer.

Meanwhile, over at the blorg . . .

  1. More meat talk. Because even in America, you can do this abstinence from meat thing all year round.
  2. Giving up the Sunday Work Habit. Which is not as simple for Catholics as it is for everyone else, but still, it’s something you are supposed to do, if you can.
  3. Music for your Lenten listening pleasure.

So How’s it Going, Jen?

1. CatholicMom.com is temporarily under the weather, but when it comes back up (pray for Lisa Hendey’s sanity), my monthly homeschooling column should be there.  I talk about homeschooling-while-sick, but no handy tips, mostly just, “Yeah, my kids are awesome.”  I’ll link to the article when it recovers.

2. Prayer request for me: I’ve got two kids coughing and sneezing. Ordinary colds.  I’m keeping my distance.  I really, really, would be better off not catching this thing.  Recall: I’m already coughing just laughing or moving around too much.  Not in one of those dramatic, “time for the tear-jerking moment in the musical” ways, but still  . . . I’d just rather not go there. Whereever Me + Cold turns out to be.  Thanks.

(If I seem like I’m on social media a ton, instead of hovering over my children while they do their homework, it’s because yes, I’m trying to be in a different room than them. We’re in communication, yes we are.  School is happening, just more hands off than usual.)

3. Speaking of suffering, here’s a preview of my new blorg outpost:

The blog is still under construction, FYI.  Waiting on the header art, need to learn how disqus works, lots of little jobs. But I’m going ahead and getting a few posts up so that the living room isn’t empty when everyone comes over for the big housewarming party.

And yes, I discussed my assimilation situation with Larry D. and he said he’d pray for me.  (Um, seriously, I loved Larry’s Star Trek piece, which I can’t seem to find right now.  Larry & I are good friends online, and respectfully agree to disagree on the prudence of blorging.  Y’all: Larry’s got a special intention he needs prayed for, so regardless of your level of vexation regarding the blorg, say a prayer for him today?  Yes?  Thank you.)

I’ll announce again once the paint is dry and the curtains are hung.

4. What I do with my free time instead of watching infuriating television shows: I break into the spouse’s video editing software, and mostly don’t botch it that badly.  A few technical errors, but for my first attempt at making a movie without swearing or punching walls, I’m okay with it: Lord Have Mercy, There’s a Baby in my Church.

The artwork is from Wikimedia, and the soundtrack can be downloaded here, for free.  Pick the “Whitbourne Conf. Mass.”  Funny story: St. P’s did this twice, once on the weekend, and once for the Confirmation Mass, recorded with two different setups.  Jon asked me to pick which of the two I liked better.  I liked the sound on this recording better than the other, but I also really, really liked the babies.

St. Peter’s doesn’t usually put babies in their choir, but the bishop came, so they pulled out all the stops.

5.  People want to know how I’m doing. So, sometimes, do I.  What I know:

  • I feel perfectly normal as long as I’m sitting around.  I’m getting a lot of writing done.
  • Animated conversation kills me, but calm conversation is okay.  I thought I needed more boring friends.  I think I just need to not talk so loud, and listen more.
  • I cough when I laugh out loud.  This happens all the time, because of the people I live with.  I think it’s probably pretty safe.
  • I cough if I move around too much. I’m getting better at avoiding this.  I’m not sure if it’s from just breathing too deeply, or if it’s something more nefarious.
  • But a little bit of up and down, in moderation, isn’t a problem.  I’m getting better at figuring out what “in moderation” looks like, so I feel better and am less tired than a week ago.
  • Otherwise I’m totally normal. No problem with speed, balance, snarky comments, etc etc.
  • Actually I’m better than normal, since my other minor signs of decrepitude are all aggravated by walking around too much, and I’m nowhere near that level of activity.  Long term, of course, that’s a good way to die early.  But short term it’s pretty funny that being seriously ill = being not in pain, at all, unlike normal life in which a handful of minor aches are just everyday reality.

To do items for this week: Keeping aiming for that exact right combination of rest and activity, and avoid catching the girls’ colds.  Heart cath next week.

6. I’m not freaked out because, you know, catechist.  Forget the nonsense about facing serious illness with a “we can beat this!” attitude.  I mean sure, I’m all about that, and am doing my share to see it done. I strongly, strongly prefer being alive, thank you.  But sooner or later you’re going to drop dead.  Either you’re okay with that or you’re not.  Probably catechesis is not for you if the prospect of eternal life doesn’t take the edge off.

 

 

Speaking of vexation . . .

Jen Fulwiler nails it this morning:

Look in the mirror. If you don’t see a beautiful person who is worthy of love no matter what size clothes she wears, forget about weight loss for a while. Spend some time talking with friends who build you up, praying, or even getting therapy to help you embrace your status as a beloved child of God. It’s not time to start trying to lose weight until you’re secure in the knowledge that your worth has nothing to do with a number on a scale.

If you pass that test, read the rest of her Lazy Nerd’s Guide to Weight Loss.

***

I’ll be going in for another round of vexation this afternoon at 2.  Thanks for your prayers, and please keep the SuperHusband in your prayers especially.  He bears the brunt of the vexation.  Also please pray for a special intention on behalf of some lovely friends of ours — the intention isn’t fit for public consumption, but it is most certainly a worthy cause for five lovely souls.  Thanks!

Effort & Illness: The Confusing Habits of Sick People

Since I surround myself with people who know better, no one’s yet given me the dreaded words You don’t look sick. Even people who do look sick often don’t look as bad as they feel*.  As Jen Fulwiler explained it last year:

I feel self-conscious that I’ve been doing better, and have no visible symptoms of being ill. . . . I worry that the folks dropping off the food are starting to suspect this is some kind of scam. The other day a super sweet lady from the parish came by with a steaming gourmet dinner for our entire family, complete with appetizers and dessert. I had just gotten back from a doctor’s appointment so I was dressed up and wearing makeup; I’d been resting most of the day so I was unusually energetic. She seemed tired from having worked so hard to cook for our entire family in addition to her own, and I used my Neurotic ESP to determine that she was wondering why I wasn’t cooking for her.

I told Joe that I should get some crutches for when I answer the door for people delivering meals, as a symbolic gesture to assure them that their efforts were not wasted. He looked at me like I was insane, and pointed out the obvious fact that my problem is with my lungs and that I would have no use for crutches under any circumstances. I said that I know, but they sell them at the grocery store, and I didn’t know where to get my hands on a ventilator — and, again, it’s all for symbolism anyway. He backed away from me slowly and went to pour himself a large glass of wine.

Yes.  This. I put a short section in my catechist book on invisible disabilities, because it’s something that comes up in religious ed more often than you’d think.  Mostly among catechists, but among students as well.  That one chapter is the one I get the most thank you letters about.

You can be seriously ill without being 100% incapacitated.

It’s pretty rare for someone to be completely felled in a single blow.  This causes confusion, because you see people wandering WalMart who look like they’re going to collapse any second now.  So if your sick person still has good balance and coordination, and manages to answer the phone in a cheerful manner, you think, “Must not be that sick.  There are people at WalMart who look much, much worse.”

The people at WalMart might be worse.  But that doesn’t cause the sick person to be less sick.

Some people are good at putting on.

I knew a lady once who would answer the phone cheerfully even if you woke her up at 4AM.  It wasn’t that she wanted you to call then.  She just had excessively good phone manners.  And thus the Perceived Illness Paradox: Some people complain a lot, other people don’t.  Some people are good at masking their symptoms, other people aren’t.  Some people are good at coming up with clever work-arounds that keep them high-functioning, other people aren’t.  You really can’t judge how someone feels inside by how they’re acting outside.

Rest makes a difference.

Anyone who races knows you manage your training schedule so that you peak when it counts.  There are days when you can ride hard and fast, no problem, and days when you can’t.  Depends on how much sleep you got.  What you did the day before.  What you did the week before.

Illness doesn’t change that, it just changes the scale.

Figuring out an unpredictable body is exhausting.

Normal people spend most of their time operating well within the margins of their abilities.  If you knew you had to ride 100 miles on your bike sometime soon, you’d have to plan ahead to make sure you could do it.  You’d strategize how to make it happen with as little trouble as possible.  But you wouldn’t feel the least bit of guilt if you misjudged: “Wow, that was easier than I thought it would be, why did I make such a big deal out of it?”  Or conversely, “I knew it would be hard, but I didn’t realize how hard!”

Sick people have to figure out the 100-mile ride about everything they do . . . and then get in trouble if they misjudge.  “Why’d you spend half an hour answering e-mails? You should have rested up so you could talk to your mother on the phone!”  Or “Why’d you put off that phone call, look, you talked for twenty minutes, no problem!”

It’ll make you bonkers.  You hear the mail truck go by, and you think to yourself, “Should I walk to the mailbox?  Or get a kid to do it for me?  What’s the best thing here? How will this decision impact my family life?”

What you like is easier than what you don’t like.

Sick people are confusing because their gifts don’t go away.  Okay, if your gift is watching football on TV, everyone will think, “Look he spends all day watching football games, he must be sick.”  But what is hard for you is effortless for someone else. What is easy — even fun — for you is difficult for someone else.  It’s not about the sheer physical energy required.  It’s the mental energy.

So my son might say to my daughter, “I see you have plenty of time for scrapbooking.  Why don’t you research computer components?  What’s wrong with you?  Just lazy, I see.”  And she’d point out to him that he received a photo album for Christmas, and he’s supposed to put his photos in it.  He had time to build a computer, and even more time for playing computer games . . . why so lazy with the photo album?

Everything costs.

There’s service to your fellow man, and then there’s letting your fellow man turn you into his servant. We live in a hyper-critical age.  What you wear, what you eat, what your hobbies are, how you spend your money — all of it is subject to the approval of seven billion self-appointed guardians.  That doesn’t change when you’re sick, it just becomes harder to please the seven billion, because you’ve got less to please them with.

Normal people might say, for example, “Is it worth it for me to give up an hour of my time to visit my crotchety uncle who invited me for dinner tonight?”  When you’re sick the question becomes, “Is it worth it for me to set aside an entire afternoon to rest, and give up getting any chores done, at all, the entire day, so that I can physically pull off the feat of visiting my uncle for an hour?”

In normal life, a dysfunctional friend is the one who makes inordinate demands on your time and energy.  In sick life, everything is an inordinate demand.  But some of those demands are very gratifying, so you organize your life to make them possible. The chief sin of sick people, I suspect, is in gratifying too many whims.

Order in all things.

Sick people are confusing because of the scale change.  With so little room for covering-over, it becomes obvious what the sick person values most.  It becomes obvious where the conflicts lie, because there’s no margin where you can quick slip in a nod towards other people’s priorities.  As in academia, the rivalries can be so bitter because the stakes are so small.  “Just a few minutes of your time” is now also, “all your time”.  How are you going to spend all that time? The way you want?  The way I want? Something in between?

The Darwins have a novena started on just this question.

*Sometimes things look so bad that you assume the other way, “It’s not as bad as it looks, I hope?”  To which I’ll observe: A badly scraped knee looks horrible.  But it feels even worse.

Papal Economics + We Don’t Want Your Stinkin’ Snow Plow

Over at the the blorg bookshelf, I do a book club bleg.  I’m reading Papal Economics, which is a good book, but one that wants to be discussed.  So if that’s your scene, get a copy and chat with me.  Your place, my place, whatever suits.  Let me know what you like.

***

Meanwhile, speaking of economics:

1) Usually snow does not actually cause any more problems in the South than it does anywhere else. That thing going on in Atlanta is an aberration.  And really? Atlanta?  It’s Atlanta.  ‘Nuf said.

2) Ice causes problems.  There is an economic case to be made in favor of below-ground power lines.  But the call-before-you-dig people probably have the winning charts, so I bet our lines stay overhead for a long, long time.   And really, the ice mostly just makes things cold and unpleasant.  It can cause the same terrible problems it can cause anywhere. But most people don’t experience that.  So you’d have to have some serious cost-benefit studies before even taking on much in the way of anti-ice measures.

But, please, dear northern friends, do not form a 501(c)3 and start collecting funds for poor, snowplow-deprived southerners.

3) Because here’s the clincher: When we get “winter weather”? We want to stay home.

Not only is there no financial justification for, say, your county owning a snow plow when you have a perfectly good Sun that will be back again by Friday . . . who’d want one?  Why on earth would anyone want to go to work on the only snow day in a year? If you’re lucky enough to get snow that often. Way better to get out the ATV, hitch up a towline and an inner tube, tell the kids to hang on tight, and do donuts on the school playground.

Clarification: I don’t actually think parents should do this.  But I approve of the spirit of such recreation.  Only mean nasty evil people think innocent children should do school work during the Snow Minutes.  Sheesh, one shouldn’t even have to do housework doing the snow minutes.  You shouldn’t have to go to bed.  You should just admire, photograph, touch, shape, throw, sculpt, and roll in the stuff.

I do feel cheated, though, because NOAA’s revised their forecast, and it’s not supposed to hit 60 by the end of the week.  I was looking forward to short sleeves.  Meanwhile, yes, of course we have harvested our icicles and tucked them away safely in the freezer.  Waste not want not.

12 Days of Plague – Cats, Acts, Magic Books

Since last I wrote:

1. Yes, we’re having a lovely Christmas.  Some of the neighbors kept the lights up until 2014, but it appears we’re the only ones going in for the full 12 days.

2. On the 1st Day of Christmas, we upgraded from Plague Lite to Plague Medium.

3. Using the ever-reliable “ask at the office method”, we had a successful Cat Day of Christmas.  SuperHusband’s colleague seemed very, very eager to deliver her son’s gently-used cat to us.

4. So I had about 30 minutes from “Just calling to see if you guys wanted to meet the cat today” to “Here she is!”.  That, because said colleague lives on a farm outside of town.  I told the children that if they wanted a new cat, they had 30 minutes to clean the house.  I said, “It’s okay if it looks like we’re busy, but not if it looks like we’re slobs.”

They wanted a cat, so they did what was necessary to perpetuate that particular lie.

5.  She is mostly a petite, very friendly, tortoiseshell-colored cat who’s had her kitten shots, and is due for a follow-up with the vet now that she is all grown-up.

6. But she’s partly a walking 12th-day-of-Christmas present.  We’re taking bets on when the kittens are due.

7. Colleague swears she had no idea.

8. I know! I said the same thing.

In other news, not-about-a-cat edition:

9. I’ve been writing a ton, but all of it offline.  I’m hoping it will see light of day in a year or two.  More later.  Much later.

10. I’m getting wildly excited about the retreat coming up in February.  Discovered that certain hymns you’d swear would be easy-peasy to find online out-of-copyright just aren’t.  Luckily, there are other hymns.

I solved my previously-mentioned problem by using iBreviary’s web page to download the LOTH for the 22nd (Feast of the Chair of St. Peter – man is that cool or what?), but not before I had stumbled upon the magic green book. Read more about it here.

For the maximum of magic, you want the one for your archdiocese.

So, btw, do I.  I lost mine already.  It’s so small.

11.  You probably already saw what I came up with for New Evangelizers for December.  It’s here.  Short version: When you tell me, “It’s the thought that counts,” I certainly do agree with you.  But if there’s an action involved, the action counts, too.  Don’t be all goofy and go around thinking that what you do with your body doesn’t matter.  It matters.

12. I know.  Easier thought than done.