Retired Waif

So it was pneumonia.

And I’m on the antibiotics, and when I’m a little more bathed-and-groomed and a little less breathless and hacky, I’ll take some photos with all my pretty meds, ‘kay?

For now, unless you live near me, I know you, and you want to babysit or help me with graduate school applications, I’ll be incommunicado for a bit.

Yeah, so I’m dealing with optic neuritis and waiting to see if bronchitis become pneumonia.  Not fun.

Working.  Or trying to.

This is a placeholder post, holding the place in which I describe the 2-day monstrosity that was my “quick trip to Drew.”  Drew was wonderful.  The trip was not.  Here’s a picture, to give you an idea, before I come back and tell you all about it.

Hannibal!  And his elephants!  That’s what it was like!  Both kids!  Babysitter in Philly!  School in Central Jersey!  Home in Bronx!  The sheer stupidity of the planned itinerary probably crashed Mapquest!

All right.  Later.

I didn’t post yesterday, because there isn’t anything I can really say.  I hope for the best.

I have not worn glasses since I was 14.  Contacts only.  Contacts changed my LIFE.  I literally went from Dawn Weiner to Veronica Sawyer in one day.  I went from being tortured to chatted up.  I swore I’d never wear the damn things again.  Due to some new health problems, my eyes are bothering me.  So, here you go.  I actually put on a red power suit and put my hair up and, well, it’s scary.

You betcha.

Mary Poppins is judging your ass.

Mavericks nurse their toddlers. And don't clean their houses. Word.

Quod Me Nutruit, Me Destruit.

So I promised to tell you all about the health woo, and how I got that way.

Around the time of my last relapse I decided to use the artificial jolt of energy the steroids had given me to jump-start myself into a bit more physical activity.  Simultaneously, I wasn’t nursing as much and felt more comfortable with weight loss, so I decided to see if I could get some of the pregnancy weight off without too much agony.  Here I am at my post-pregnancy, thirtysomething “normal” weight (I’m the one in the green and black):

I actually don’t see too much wrong with that, to be honest–but I wanted to lose a little.

Historically, I eat an incredibly healthy diet.  I wasn’t about to go into some weird unsustainable food-system alternate universe, having had that experience with macrobiotic and paleo eating in the past (both were good, but living and dying according to a food system is just not my thing… I’ve got to be a bit more wash-and-wear than that).  I tinkered a bit with what I ate–not much–and ended up just cutting portion sizes while being a bit more careful about nutrition.  Basically, I eliminated what few junk foods I eat, supplemented myself up to optimal levels (especially of B vitamins), and then just took what I would normally eat (a pretty optimal fruit-and-veg, lean-protein, whole-grain diet with a ban on processed crap) and… cut it by a third.  And waited to see if I’d feel starving or weak or headachy or or or…

Well.  

First of all, I got thin.  Fast.  This had a lot to do with the fact that at the same time, I got my Razorblade and was wheeling all over creation building up my arms.  This, by the way, was the ideal workout–I could push myself as hard as I wanted, provided it wasn’t too hot out, because when I got tired I was already comfortably sitting down.  So I started spending the better part of the day out and about, which also helped my mood.  My baby became a toddler then, I couldn’t afford a housekeeper anymore–a host of factors got me more physically active.  So that helped.  But keeping up the “diet”–which really wasn’t a diet at all–had a lot do with it.

Essentially, over the course of 2008, I’ve gone from 165 lbs (the photo above) to a low of 110, currently holding at 113.  A BMI of exactly 20.  Here’s what that looks like:

So, yeah, OK, I’ll admit it.  Fun.  Size 2 jeans and all that.  But that really isn’t the point, this is:

Since I started eating this way, I’ve had no real relapses and my symptoms have abated.  I also have tons of energy, and am just, in general, so much healthier.  And yet I knew–knew–that this was all wrong, based on everything I’d been told.   I knew for a fact, being an OCD nutrition-person, that I wasn’t getting the calories I “needed,” and that by rights I should be having all sorts of problems.  Which I wasn’t having.  In fact, the longer I kept to this, the better I was feeling.

Googling around, all “wtf?”, I came up on calorie restriction.  This is the sort of thing that would have seemed mad woo to me if I hadn’t basically been doing it for months and getting every positive effect that these people go on about.  So I’ve been digging into it a bit further, using a bit more of its structures, and, um…

I’m converted.

Seriously.  It’s working for me health-wise like you wouldn’t believe.  I can’t pretend I don’t like how I look, although that does piss some people off.  I love the energy, the clear skin, all of it.  Plus, my husband and I get to play all sorts of fun starvation games with each other (don’t ask) and I’m actually bringing him around to eating remotely healthily–a biggie, because my father-in-law now has prostate cancer, and I plan to keep this man of mine around forever.

So, yeah.  If anyone wants to, you know, bug me about CRON and ask how to do it or whatever, I’m available for that, and am now swearing by it.  I’m eating about 1300 calories a day, which will probably go down to 1100 or so when I’m not nursing.  It takes some doing to make sure that’s nutritionally complete, but I’ve expanded my diet and gotten into new foods in order to make sure I get all the nutrients and well… that’s a plus, too.

Is CRON woo?  I don’t know.  But right now I’m really feeling it.

I have every intention of living forever.  I have a 100-year-old great aunt.  I will get there.

Madonna of the Prairie

Yeah, so baking bread always makes me get all idealistic about the coming apocalypse.  I make really good bread, so it’s kind of worth it, but it takes me to that primal, Continuum-Concept, I-wanna-live-in-the-forest-and-scavenge-from-the-derelict-cities, warm fantasy place.

Why is it that lately so many of my friends and I have found ourselves discussing what we’re going to do when It All Goes to Shit?  More importantly, why is it that these conversations have led to the realization and resolution that a few of these post-apocalyptic changes might be perfectly in order right now?  Have you done this?  Have you weighed the options and the drawbacks (no more Copaxone or Acuvue lenses!) and decided, eh… you’d deal?  And then started thinking about how you’d deal, and realize you could kind of be dealing that way right now, and the nice little jolt of superiority that gave you while you watch everyone else scream about the economy and chase their tails made you decide fuck it.  I’m there.

Is it just me?

I’ve done a few things in the past year.  The most important are that I’ve transitioned to entirely from-scratch cooking instead of mostly, I’ve begun paring down our possessions and budget, I’ve even started what AA might call “a searching and fearless inventory” of what exactly my strengths and weakness are in the post-apocalyptic usefulness department.  Suddenly, I’ve gone from being someone who lives and dies by city rhythms to someone who has learned an awful lot about solar panels and has no desire to live near too many people.  Self-sufficiency.

Anyone else here with me?

I have a whole pile of things that piss me off that don’t bother other people at all.  At the top of the list would probably be someone petting my arm, but I also don’t like cold cereal with milk, white foods, or when people quote The Simpsons.  However, special hatred is reserved for truncations of words.  Those cutesy little shorten-ings y’all so love to do these days?  No.  Prisoners are not being mistreated at “gitmo.”  A bank called “wamu” did not recently, spectacularly, fail.  And I most certainly am not participating in something called (feh) na blo po mo.

That said, I’m trying to do that posting-every-day thing for November.  Because I’m swamped with academic work, I have too much to do, and I get more done when I take on too much.  If the expectations are sky-high, in attempting to meet them I usually surpass what I’m capable of when operating with “reasonable” expectations.  A wildly productive failure, as it were.

This is something I should have realized about myself the instant I got sick.

No matter.  I’m back to the blog and have many, many things to write–all about my year-long spiritual crisis and its possible resolution, my re-dedication academic life, the fact that I’m embracing a couple of “alternative” MS treatments (don’t worry, I still take my medicine) and actually finding it helpful, how I used my wheelchair to build my body back up to a functional state, and how some recent new acquaintances have made me realize that I owe a tremendous debt to the disability community.

This last subject is huge, and I don’t know if I can do it justice.  I’ve now met several other crips or chronic sickies who, for whatever reason, have chosen to be outside the disability community, and their level of debility, of broken-ness really, is simply staggering.  And I know–I know–that I would have been the same god-damned way if I hadn’t found my way here.  The fulfillment of the sick role, as it were.

SO thank you, first of all, Jen.  You were the inspiration.  And thank you Disability Studies at Temple, and Not Dead Yet, and Ragged Edge, and ADAPT, and Katja Stokely and Kay Oleson and Amanda Baggs and Dave Hingsburger and Elizabeth McClung and and and.

My Academy Awards speech notwithstanding, I find myself now on the other side of the fence.

The challenge, I think, will be to extend my understanding, offer options without proseletyzing, and to keep my anger in check.  The anger arises, by the way, when I meet someone who has convinced themselves that a sick person “cannot” or “should not” do X thing–generally something I do–because I experience their defeatism as a direct threat to my own freedom, the freedom I’ve wrestled and fought and clawed to get away from the disease.  So yeah–it gets hard for me to meet someone who not only is not clawing but who smiles patronizingly while intoning what can and cannot be done, without wanting to start slapping them over and over until they get up and stop me.  Because I’d rather see them angry than so complacent in debility.

Over at Multiple Sclerosis Sucks (link forthcoming, it’s a super-cool site) there’s a spiffy little essay about how people who try to tell sickies that “you’re only as sick as you feel!” need to shut the fuck up.  And, well, word.  That is not what I’m talking about  doing.  By all means, tell me how sick you are, and I’ll believe you.  But don’t tell me how sick sick people are in general.  Particularly when you don’t know any, because the community has nothing to offer you, and so you’re the Sick One among your social scene and deeply locked into that role.

I want to start writing again about the pain and anger and sometimes humiliating physical aspects of what I’m experiencing, and I want to do it without seeming like I’m giving up or like I’m “overcoming.”  And yet everything I say seems to fall into one of those categories.

I’m giving up because I accept myself as defined by the diagnosis (diagnoses, now, and I’ll write about that too) and take it as an intrinsic part of who I am.  There’s no “real me” hiding within the illness–it is me.  And the fact that I’ve chosen to live a highly demanding life (physically, mentally) does not mean I’ve “overcome” anything–simply that I, the sick I, have chosen to drag my sick body around in this demanding way, and I have a right to do that.  

The world is full of motherfuckers who will tell me I should have the “right” to die, because my life is worth less than a whole, hale and healthy person, but who will deny me the right to push sleep deprivation, exercise, rough sex, whatever to the point that I do.  Because, you know, I’m sick.  And sick people don’t.

Lots more to write, I think.  Happy November.