Yesterday was one of those complicated, sad, difficult days that I can’t talk about here.  The only thing good that came of it was the feeling of connection to Husband, who as it turns out can crack me up even when I’m in distress and getting sick *and* hungry all at the same time.  I can’t say enough about how much my quality of life and happiness are increased by his presence.

Side note: we tried to go out for dinner last night, and had our first total veg flop.  We went to Nick’s Spaghetti House, which I fond memories of, but it turns out there is not a single vegeterian option on the menu!  All the pastas are meat sauced.  It was very hard to leave the delicious smelling restaurant in search of something else.  Of course the dinner we ended up having was a disappointment.

Today I might post a recipe since I’m going to be making one of my favourite soups of all time (fennel and white bean), but first I have to whip myself into a cooking frenzy because I am actually sick and my energy is poo poo.  If I end up reading on the couch all day, I guess I could post pictures of that instead.

I am having a shit morning.  Couldn’t sleep last night and then finally sacked out this morning around 6, slept until 9, and that’s too late in the morning to facilitate getting back on a regular 11pm bed time tonight.  Grarrgh!  It amazes me how I never stop feeling enraged and hopeless when I can’t sleep.  You’d think by now I’d know to just mellow out about it, but these are well worn emotional paths.

But nevermind that.  Read this:

Inflatable dog turd sculpture escapes Swedish museum, wreaks havoc.

So my dad, as I wrote recently, has rheumatoid arthritis.  He’s had it for about fifteen years, and for most of that time it’s been pretty well controlled.  He skis, he golfs, he carries out strange construction projects around his house, that kind of thing.  But over the last six months or so the gold shots he’s been on have lost effectiveness, and his rheumatologist has been experimenting with different drugs for him.  Nothing’s really working well.  Once he had a dangerous hemorrhage from the medication he was on.  And in July, he basically became crippled with this recent terrible attack.  For the first time he’s getting those characteristic twisted, enlarged joints that people with RA get.  He can’t sleep, can’t do any sports, is ground down by constant pain.

Husband and I had done a lot of research about diet and RA because some of our vegan books had mentioned a low fat vegan diet can help.  We went to the medical literature and found that there are actually quite a few studies on this question, and what it boils down to is this: many people with RA who switch to a low fat (ie, no added oils, all fat coming from whole plants themselves) vegan diet experience significant symptomatic relief.  We printed off a bunch of articles for him, and a few days later, he told me he wanted to try eating like we do.

So last week I went out to his place and spent the day cooking.  I made five big recipes of food he could freeze in meal sized portions.  We talked all day about veganism - how to plan meals, what nutritional needs must be considered, how to shop, all of that.  It was an exciting but sadenning day for me.  This was the day he couldn’t unload the grocery cart.  He had to take a nap in the afternoon.  He could barely get up and down the stairs - he had to take them one at a time like a child, placing both feet on the same step before going on to the next.

And guess what?  Four days later my dad called me - he’s had a major remission in symptoms!  Yesterday he went out for a two hour walk that included stopping at the book store and visiting friends - normal things he hasn’t been able to do because of stiffness, pain, and exhaustion.  I was elated!  And so is he - he was really afraid of what his life would become if he was this housebound, pain-ridden creature for the rest of his days.  His quality of life has increased a lot.

There’s no way to know if the diet is the reason.  In the literature, people who get benefits from this diet tend to have them pretty quickly - within a week or two.  So my dad’s experience does fit with that picture.  But it might be coincidence.  And that’s how he sees it - he doesn’t credit the diet entirely (though he’s not going off it for now).  I think what will happen is a natural A-B-A-B experiment, wherein he falls off the vegan wagon, has a resurgence of symptoms, then goes back on it and feels better.  That would increase our ability to attribute his improvements to the diet.

But in any case I don’t care what the cause of it is.  As long as he’s feeling better I’m thrilled.

Here is the short version of the appointment: I am in perfect health and there is no diagnosis (which I expected).  There is no treatment, not even for symptom management (which I did not).

Here is the short version of the rest of my day: lots of blubbering and despair.

The happy ending is that I did consult a different doctor, and he says there are indeed a few things to try, which he figures my GP just wouldn’t have known about.

It was a bad appointment.  I was made to wait an hour past my time to get in, and when I did, the whole meeting took less than five minutes.  After telling me there are no treatments at all, which let me tell you, was incredibly awful and hopelessness-inducing, she then went on to give me the speech about how if she doesn’t know the cause of the problem, it can’t be treated, and medical science doesn’t know everything.  This is irritating because a) I already know the latter part, duh, and b) the first clause isn’t even true.  Medicine treats things which have an unknown etiology all the time.  Schizophrenia and depression come to mind as a couple examples but there are scads more.  The field of medicine advances largely through clinical work, where doctors just try stuff out and see if it works, not through research, where a bunch of scientists come up with something and then gift it to the front line docs.  This is not a first-principles-first sort of process - quite the opposite.  Induction, not deduction.  Her comment was largely designed to put me off and shut me up.  How annoying.

Anyway, at this point I will admit to doing something totally embarrassing, which was to start to cry in the office.  Honestly, this whole process has just been going on for so long and has taken on epic proportions in my life and to be told by my doctor that nothing can be done was devastating.  In addition to feeling crushed and scared I was feeling totally embarrassed, and all I managed to blubber out was an apology, then managed to choke out that the whole thing was just rather frightening.  At which point she prescribed me some sedatives to take at the next attack, and gave me a little talk about how we’d work on a solution together.

We need to unpack this a little so you can understand why this was intensely infuriating.  One, I have never once said anything about anxiety in relation to these attacks.  I don’t get anxious when I have them, I get pain.  Pain is uncomfortable and it can be scary but I’m not exactly hyperventilating over here.  So she’s prescribing not based on my presenting problems, and in fact she didn’t ask me about anxiety - what was going on there is she thinks my problem might be some sort of somatizing issue, and doping me up might resolve it.  This played right into my fear of that very thing, which okay, might be legitimate, but also managed to be deeply invalidating and insulting at the same time.  I just felt like she didn’t get it at all, didn’t get how terrible it is, how it entirely cripples and shuts down my life.  You can’t just say there’s no hope and send me away in under five minutes.

And what is this talk of finding a solution together?  Did she not just tell me, in no uncertain terms and repeated several times, that there are no treatments?  Which the fuck is it, there is no symptom relief or we’re working on a solution together?  What kind of solution, exactly, did she have in mind?  Either she was just spouting platitudes, which is retarded, or again she figures it’s emotional in origin.  The fact that I am at that very moment crying into my lap does nothing to help my case for saying it’s not a hysterical problem.  This appointment is the culmination of a year of uncertainty, fear, testing, and worry - after all that, to hear there is no hope, I imagine many people would break down.  This doesn’t mean I’m some sort of wandering womb hysteric.  And if she has some grand design to track my stress or emotional wellness or whatever, she is doing a shitty job of approaching it, because she didn’t ask me about any of those things.

Another possibility is it just kind of freaked her out that I fell apart, and she was trying to be reassuring.  Lesson one in therapy school is to not give false reassurance because people smell it a mile away and it tends to infuriate them.  Someone should give my doctor the head’s up.

Anyway, at this point, three minutes after her arrival, it was clear we had nothing more to talk about, so I left.  I was too choked up to really say much, I just accepted the script for sedatives, and collected my things and left.  On the way out, she says, brightly: “Have a nice weekend!”

I could have murdered her.  Kiss my ass, that’s what kind of fucking weekend I’m going to have.

Okay.  The good news is I now have rock solid proof that my brain and spine and nerve function is absolutely top notch, no problems at all.  I have written here several times “it’s not like I have a tumour” and that is designed to make it look like I’m not worried, most importantly to myself, but the truth is I have been really scared that there’s something growing up there.  There isn’t.  I am intensely, intensely relieved.

I also know that my GP is not the final word on treatment.  Hence my consultation with someone different.  And lo, there is hope.  Also intensely relieving.  But I didn’t know that when I got out of the appointment - at that time I was just freaking out, calling my husband and speaking in monosyllables because, I don’t know about you, but I can’t talk and cry at the same time.  It was actually pretty pathetic.  I’m embarrassed at how poorly I handled the whole thing - emotional breakdown, taking the patronizing doctor talk without challenge, just being a spaz.  Ugh.

Anyway, that’s all done with now.  Today I plan to finish my novel and try to just unwind a bit, you know?  Yesterday was an emotional wringer.  I’m wrung out.

I need a beer.

This morning I was supposed to go to my doctor and hear the final word on just what the hell is wrong with me (I know, I know, it’s sure to be a huge list).  What actually happened was the clinic called to cancel my appointment because my doctor is sick.

If anybody needs me today, I’ll be at home wringing my hands and staring miserably into the middle distance.

I have allergies, and this morning I woke up with Terrible, Awful sinus pressure.  I just want to say that it is incredibly, deeply unfair to have to suffer through months of headaches and sinus pain and itchy eyes just because there happen to be trees on the planet.  I mean, come on!  It’s actually sort of pathetic - hay fever, I mean. You’d think my body could come up with something better to do to me.

Oh wait, it did.  This Tuesday I go for the results of months of testing (which culminated in the never-to-be-forgotten three hour MRI) to see what my pesky nerves are getting up to.  However, I am pretty sure they’re going to tell me they don’t know.  The reason I think this is that my care has been handed back from the neurologist to my GP.  If you have something serious like MS or whatever, the neurologist keeps you.

Also, when I finally broke down and called the neurology clinic on Monday to see when my results would be available, it became clear that they’ve been available for a while, but no one bothered to call me.  So it can’t be anything too serious.  Right?  They call you if you have a brain tumour.  I’m sure they would call if my brains were about to leak out of my ears or something.

So what I expect to hear is this: “We have no idea what is wrong with you.  Your body is a special snowflake whose mysteries we cannot hope to unravel.  In the meanwhile, take these pills when you get an attack.”

Okay.  There was a time when that would have been a disaster.  I really wanted a diagnosis, because the uncertainty was killing me.  I figured if there was a diagnosis, it would mean there were treatments - and, it would mean I’m not just crazy and somehow doing this to myself.

Now I realize that a diagnosis actually isn’t good at all, because the kicker of neurological diseases is almost all of them can’t be fixed.  And, if I have something significant enough to have been defined in the medical literature as A Disease, it’s probably pretty bad, right?  So I don’t want a diagnosis now.  I’ve learned more about this stuff and apparently it’s not uncommon for nervy stuff to stay mysterious in origin, it probably doesn’t mean I am crazy, and even without a formal diagnosis, there are lots of different medications to try to treat the symptoms.

So I’m all ready for the no-diagnosis diagnosis.  I’m a little nervous about the medication because a doctor I know figures there’s one certain pill I have a very good chance of being prescribed, and one of its side effects is “cognitive blunting.”  I asked, “So, like, I have a little trouble focusing or something?  I forget where I left my keys, that kind of thing?”  And he said, “No, like you can’t count backwards from ten.”

And though he went on to explain this particular side effect is rare and only happens in chronic users, I will be very suspicious of that med if I get it.  Quick - would you rather be in pain or stupid?  It’s actually a pretty tough call!  The pain is, no question, terrible.  But so would being stupid, ya know?  I don’t know.  Obviously I have been prescribed nothing yet and know nothing yet, I’m just ruminating over here.  As you might guess I’m pretty nervous about this appointment on Tuesday.

So until then I will stuff my traitorous body with antihistamines and try to keep my imagination reined in.

I got this thought-provoking comment from my friend Puck about my somewhat vague post on food from yesterday:

Eating’s a pleasure. “Eat Food: Feel Good.” Granted “Eat Food” in this case can also end up with “get fat and unhealthy” but it can be controlled without having to resort to “Almost never Eat Food and when you do restrict your input incredibly”.

I don’t see any reward — aside from no risk of eating too much — of not enjoying yourself. Neither of us believe in some sort of finish line to life where you get rewarded for what you did in it.

You get rewarded in life *by* what you do in it. And that’s why I eat yummy food.

I had a strong reaction to this comment because of the bit about almost never eating and restricting input incredibly.  This could be a reference to either veganism or to regular eating just highly restricted - and both of these are things I have experienced.  So I thought, why not blog about it?  I do live for your comments!

In the old days, when I ate the standard North American diet, I struggled a lot with my weight.  I found it very difficult to manage my food intake so that I wasn’t overeating.  The pleasure I took from chips and burgers and fries was always tainted by a sense of guilt and shame, because I knew I was paying for that pleasure in pounds.  I never really freely enjoyed all that bad food, because I was never able to just accept and love my overweight body.  I also suspected, though at that time had done no research, that the kind of food I was eating was probably also bad for my health over the long term.  So I can only speak for myself, though I suspect others will identify: eating was not a pleasure, or at least not a pure one.

I dieted for years, and dieting did feel like starving.  I had to really cut back to see any progress, which was depressing as hell and impossible to maintain.  So I can see why making the changes required to maintain a healthily low weight feels so impossible and like such a deprivation. Like frogs in a pot, I think we get blinded to the reality around us, which is that we have created an environment of plenty and therefore artificial need.  This, I believe, is the source of much of the difficulty with dieting.  Losing five pounds wouldn’t be hard if we weren’t so thoroughly accustomed to eating chips and fries and doughnuts and chocolate bars all the time.  We have come to accept this kind of eating as the normal set point; now even a whole foods carnivorous diet would seem extreme.

The problem is that the pleasure we derive from food has become associated with the worst kinds of food - deep fried, heavily salted, prepackaged, full of high fructose corn syrup.  We’ve lost our taste for regular old food, fresh from the ground or the animal.  Giving up these bad foods is experienced as an intolerable punishment - we feel entitled to the bad food, and enter an endless cycle of eating, feeling guilty, gaining weight, trying to lose it, failing, experiencing hopelessness, and returning to the bad food.  We have become slaves to our conveniences.  “Eat food: Feel good” has become a trap.

Here is the best part of being a vegan: I eat like a hog and can lose weight.  In addition to eating only plants, I really work to keep my fat intake down to around ten percent of calories.  This means in practice that I get my fats almost exclusively from the plants themselves, not from added oils.  This also means that my food is not very calorie dense compared to the normal diet.  So I eat all the time.  I usually have four proper meals every day, and I snack on fruit and veggies throughout the day.  I never feel deprived.  I never go hungry.

The irony is that now that I have restricted my diet, I finally have the freedom I craved to truly, purely enjoy food.  I don’t worry about my weight at all now.  So when I sit down to a meal, there’s nothing on my mind except whether to have my salad before or after the main course.  The guilt is gone and the lard is going.  This is what it is to truly enjoy food in an environment of plenty.  Puck, I eat yummy food too!

But of course I pay a price.  I can’t just eat anything at all.  I can’t have an ice cream sandwich, for example, which is surely one of summer’s chief joys.  The question is, Is this a real deprivation?  It might be, if I were constantly hungry and frustrated with being a vegan.  But my belly is always full, and who cares about ice cream sandwiches when there are fresh fruit smoothies?  The more I relax into this lifestyle, the less it feels like a chore or a deprivation.  It’s becoming more and more normal to me, and along with this normalcy comes comfort and pleasure.  It hasn’t always been easy, as I said yesterday.  I’m going against a lifetime of eating differently than I do now, and there are things I miss a lot.  But it gets easier, and now I’m in a pretty good place with veganism.

So to Puck I would say I do enjoy myself, thoroughly, full-bellied-ly.  My relationship to food is no longer conflicted.  Will I be rewarded for this lifestyle within my lifespan?  Only time will tell, but assuming I fall within two standard deviations of the norm, epidemiological data says I have a great chance of avoiding heart attacks, obesity, and certain cancers, and diabetes.  It’s just a matter of deciding if it’s worth it to you (anyone).

I’m sure there is also a way to eat a carnivorous diet that doesn’t involve a sense of deprivation or weight gain, but alas, I never discovered it.  Of course I was never able to kick the junk food habit, which surely contributed.  I doubt deprivation is the necessary state for meat eaters who want to stay trim, though avoiding deprivation from hunger probably requires abandoning junk food almost entirely.  I don’t think I would advocate anything so strict as almost never eat and when you do restrict incredibly - there must be some middle ground between overeating and undereating that allows people to feel full, to purely enjoy food, and provide for all nutritional needs.  I mean besides veganism. 

Months of reasonably successful sleeping tricked me into thinking I might be transforming into one of those normal people who just sleep when they’re tired.  But ha ha, it was just a trick.  Woke up this morning at four to pee and haven’t been back to sleep yet.  I finally gave up, got up, and cleaned the living room.  I feel like four pounds of shit in a three pound bag.  But startlingly awake and alert!  I can actually feel my eyes opening as wide as possible.  It’s enraging, basically.

When you are an insomniac, being tired has nothing whatsoever to do with sleeping.

I live right near Science World here in Vancouver.  For those who don’t know anything about this city, my neighbourhood should conjure up images of water, parks, and nice yuppie families strolling with babies through one on the edge of the other.  Well, the west side of my block is like this.  The east side is full of junkies and panhandlers, but we’ll let that go for today.  Anyway, Vancouverites will know this.  What they might not know is the Horrible Truth about the park across the street from me: it’s where the dragon boaters go.

I don’t know what a dragon boat is.  It looks like a big canoe with too many rowers to me but what do I know?  Also, it appears to be powered entirely by fear and shouting, because each dragon boat has some loud mouthed shouter in it, screaming at the line of rowers, and they all furiously row, I assume to prevent the shouter from peeling their skins off like a banana and rubbing salt on what’s left over.  It’s the only thing that explains the violence and energy that goes into the rowing.

Did I mention the shouter?  Did I mention I can hear those fuckers in my bedroom at the crack of fucking dawn?  Did I mention I don’t like being shouted at at the crack of fucking dawn?

Especially when I am in the midst of a nerve attack, my first in several months.  It came on last night while out with friends (Lara, welcome to the strange world of BV where you find out more about me from the blog than from real life).  A group of us ladies hit a bar and swapped stitches stories while drinking - and by around ten I could tell my crazy nerves were getting agitated (for those new here: I have some kind of thus far undiagnosed problem with neuropathic pain).  I hung on for an hour or so but realized I needed to get home pretty soon so I could get the horrible, irritating clothes off my body and lie around in extreme discomfort for the rest of the night.  And on until it abated.

Plus I have a paper to finish today that is due tomorrow.  Which seemed like the better reason for leaving to put forward, since I didn’t know everyone there and didn’t want to be all, “Hey new people I just met, I really feel like ripping my clothes off, so I have to go home now.”  Anyway, I said goodnight and came home, to do exactly as planned: try not to move and just be miserable most of the night.  Finally around three I fell asleep, and this is great because there is no pain in sleep, or at least there wasn’t, until some mother fucking piece of shit dragon boat shouter started up and woke me.  May the fleas of a thousand camels infest their nether regions.

Now I’m up, preparing to dig into the paper, and feeling seriously crabby about how shitty I feel (and wouldn’t be, if I was still sleeping).  Let’s hope it improves enough for me to go to Mission tonight for a game I’m playing out there.

I went to my first meditation class tonight.  I really liked it.  It seems incredibly simple yet incredibly difficult at the same time - most intriguing!  Also, it felt great (but hard).  The teacher was really encouraging and interesting, and they served tea and cookies afterward!  Looks like this will be a weekly event for the members of the BV household.

Anyone out there meditate?  Thoughts on the matter?