dear 18-year-old me

Dear Me, circa 2002:

You just graduated high school. Nicely done (not that there was any doubt). You’re moving away from home, and you’ll be surprised just how much that helps in the long run.

Enjoy your time at U of T. Go to class more. Try to sleep more. Eat better. Stay vegetarian—you’ll just be jumping back on that train in a couple of years anyway. Cherish the friends you make there because they are some serious kick butt people. Enjoy Toronto more—you’ll be wishing you still lived in a city 10 years from now. Go out drinking and dancing more because you won’t be able to do that for as long as you think. Go sing karaoke: Seriously. Just do it.

Go out and be young while you can: Things are going to get serious faster than you expect. You’re going to get hit out of nowhere with a chronic illness. You’re going to get married young. You’re going to be a journalist, which means you’re not going to have money. You’ll be lucky enough to find work in the midst of a terrible economic downturn. Your husband will go on to get two master’s degrees. You’ll become a Sunday school teacher (weird, right?). You’ll move to the South. You’ll run a newspaper. And all of this? It’ll happen before you hit 30, which seems really far at 18.

Most importantly: Relax. Things will work out for you, even if it’s not exactly the way you expected. Despite everything, life is pretty awesome.

Cheers,

Me, circa 2011

 

P.S.- Stay away from “The Matrix.” The second two movies aren’t worth the $30 you spent to see them.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

spoonie envy, or why my disease is worse than yours

I overheard something that makes me me angry, frustrated and really sad all at once. A woman was talking about her rheumatoid arthritis, something a (younger) family member has as well. But then she said, offhandedly, “Oh, her RA is nowhere near as bad as mine.”

I have several problems with that statement.

First, how can any of us really know the pain someone else endures? Most of the time, I look—and act—100 percent pain-free; many would not guess that I have psoriatic arthritis, that I’m multiple drugs just to keep me functional though hardly without pain. Since none of us can actually slip into another person’s skin, not a one of us can say with any certainty, “My pain is worse than yours.” Period.

Then, of course, is the fact that it’s not as though it’s a competition, as if there’s only a finite amount of pain in the world that must be gobbled up in order to garner the sympathy of others. The fact that someone else is hurting doesn’t actually have any impact on the amount of pain I’m in—which is why I’ve never understood when people say, “Oh, you shouldn’t complain. [X person] has it sooo much worse than you.” I always want to bop people who say that on the head; my aches and inflammation aren’t conditional upon those of someone else. My pain doesn’t diminish because someone hurts more.

But perhaps more import than both of those points is this: We could all do so much good if we weren’t so concerned with who gets to wear the pain tiara or with maintaining the division of diagnoses that run between us. Separately, those of us with various kinds of autoimmune arthritis—or even just autoimmune diseases—don’t have the numbers to have as much clout as, say, Susan G. Komen for the Cure. But together, we number in the millions; the many can do more than the few. Why not pool our resources so we can really get some stuff done? Imagine if as many people who donate for breast cancer research or to the American Heart Foundation knew—and, more importantly, cared—about autoimmune disease. That would be huge. But we’re certainly never going to get there—or it will be a long time coming—if we can’t all work together.

blue bird

I must be insane.

This is one of the busiest times of the year for me, professionally. My newspaper is small enough that we run the pictures of all the graduates in a keepsake edition, and that means hounding the school district PIO for the pictures, editing them (greyscale, curves, resize, save as!) in Photoshop, matching the student ID number (which is how the pictures are named) with the master list and renaming the files alphabetically, double checking the names, putting mug shot boxes on the pages, filling them with pictures, resizing the pictures again, putting the names under the pictures, double checking the names again….

Plus, you know, we still have all the regular, small-town stuff to cover, which is a lot since the weather is finally turning nice.

So, what do the Professor and I decide to do? Paint our apartment, of course!

Sigh.

It’s going to look awesome when it’s done, but it’s definitely exhausting me. Painting is hard work on the joints! And, since we’ve been doing it after I get home from work, it makes for some long days. But, I have tomorrow off for Memorial Day, so we’ll do some more then—after I sleep in some. I can feel it in my bones; if I don’t start taking better care of me, I’ll be paying for it.

(Also, for those wondering how the cake batter shake turned out, it. was. awesome.)

#HAWMC day 28: not anymore

(I won’t lie—I really wanted to name this post “At Least I’m Not As Sad (As I Used To Be)” but I already did that. Damnit.)

(Also, incidentally, last poem of the Heath Activist Writer’s Month Challenge!)

Not anymore

I used to be carefree. But I’m
not anymore. I
used to be weak. But I’m not
anymore. I used to be aloof.
But I’m not anymore. I used
to be afraid of losing. But
I’m not anymore. I used to be
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(Now, I’ll leave you with fun.’s “At Least I’m Not As Sad (As I Used To Be)”. Because that song is awesome.)

#HAWMC day 22: more cowbell

There are so many things I wish were actual factual prescriptions for psoriasis or psoriatic arthritis. Take shopping, for instance. I wish at my appointment next week, my NP would turn to me and say, “Nessie, you know what will cure what ails you? A trip to the mall or that awesome thrift store or the flea market. Girl, you need to get your shop on.”

Spending the whole day in bed reading would be another kick-butt Rx. “Nessie, no more of this working hard nonsense. For the next week, you need to spend the day in bed, reading all those books you’ve started but haven’t had time to finish.”

Ooh, I wish eating red velvet cake (or, better yet, red velvet cupcakes!) was a scrip. “We need two red velvet cupcakes over here—STAT!”

Getting dressed up and going out somewhere fun—like dancing or to a show—why can’t that be a prescription?

Clearly, we all need to ditch Dr. No Fun and start listening to Dr. Awesome—the kind of doc that prescribes stuff like I mentioned above. But we all know pretty much all of those things would not really make us feel better. (Well, not for very long, anyway. I’m looking at you, red velvet cupcakes.)

What do you wish could be a prescription? (More cowbell, definitely.)

#HAWMC day nine: worth overdoing

Today, I really overdid it.

All week, I could feel  my body fighting something off. I was fatigued and achy. My throat become sore later in the week. And then, like an idiot, I took my methotrexate injection; I was so drained, I didn’t even think about what a bad idea that was.

And today, I woke up feeling terrible. But today was my local Walk to Cure Psoriasis, and I’d been looking forward to it for months; I wasn’t going to let a little thing like being sick get in the way. Plus, my mum and mother-in-law were coming in from out of town, and I didn’t want to disappoint them.

So, the Professor and I got up early, and somehow made our way over to where they were holding the walk. And it. Was. Cold. Friday was sunny, beautiful, with a high of 83. Sunday is supposed to be about the same. Today? I don’t think it got out of the low 50s, if even that. But we made it through the walk, and then headed out to get breakfast. That was helpful; I had fruit and a bagel and a big glass of freshly squeezed OJ. That perked me up a bit, so my mum, mother-in-law and I headed over to the local flea market. We all found some great stuff—including, for me, this great, 1940s citrine ring and a great, vintage needlepoint broach—before heading back to my mother-in-law’s place. The Professor and I had planned to stay for dinner, but the whole week of just relentlessly pushing myself and ignoring the signs my body was giving me came crashing down. We came home, and I went to sleep.

I don’t know why I keep doing this; I think I can just push through feeling terrible without any consequences. And that’s just not true. Even though I’ve had psoriatic arthritis for almost six years now, it’s a lesson this crazy disease keeps beating me over the head with: There are consequences for every action. Doing one things means I can’t do something else. And ignoring that gives me a day like today. Still, even if it wasn’t necessarily the best of ideas, I’m glad I went out to the walk; it was to see so many people supporting people like me. And that’s just what the doctor ordered.

#HAWMC day three: stupid questions

Though it’s been said, “There are no such things as stupid questions”—hell, I’ve even said it myself—some of the queries I’ve been subjected to as a result of my psoriasis or psoriatic arthritis make me want to change my mind about that nugget of popular wisdom.

The granddaddy of them all, however, is probably the most harmful question those of us with (mostly) invisible illnesses face: You look so healthy/normal; how can you be sick?

Of course, psoriasis isn’t necessarily invisible; the itchy, flakey, red, angry patches are easy to see if they’re on a part of the body that’s easily seen, like your face or hands. Luckily for me, my psoriasis is mostly confined to my scalp (at the moment), though it hasn’t always been that way.

And for some people, arthritis isn’t invisible, like the destructive form of psoriatic arthritis mutilans. But for me, in both cases, it mostly is. So, why is it so hard to believe that people could be struggling so hard just to look normal when they do, in fact, look completely healthy?

Well, at least in my case, I try really, really, really hard to make myself seem normal. I do my hair. I put on makeup. I wear nice clothes and shoes. I drink caffeine to give me energy. I take lots of pills to keep the pain and stiffness at bay. I sleep an insane number of hours on the weekend and try to take it easy after work. There’s actually quite a bit of effort into looking and acting effortless.

People often also have an expectation that the sicker you are, the worse you should look. There have been days when I have felt exceptionally horrible and no one was the wiser. That’s kind of the point: It’s an invisible illness. It’s not out there for the whole world to see in the same way being in a wheelchair is.

So here’s the rub: Just because we don’t look sick doesn’t mean we’re not. Just because we look like we’ve got everything under control doesn’t mean we do. And just because we’re good one day doesn’t mean we will be the next. That, my friends, is the fun of an autoimmune disease.

so much to say

Which medicines to take—and whether to take them—is definitely a pressure I’ve felt as a person with two chronic illnesses: psoriasis and psoriatic arthritis.

Sometimes those pressuring me to take fewer pills and injections may have good intentions: take more vitamins, eat fewer nightshade vegetables, exercise more or differently, take XYZ miracle cure.

While I appreciate the (I hope) kindly sentiment behind those and other suggestions, I find the implications behind people’s repeated suggestions that I manage my diseases differently a little offensive, as if I don’t know what I’m doing. I have done the research into my treatment. I have looked into alternative and natural solutions, and I incorporate a mix of modern medicine and natural options. As I’ve mentioned before, I became a vegetarian in an attempt to help my symptoms; despite what some people think, I don’t eat pork, beef, poultry or seafood, and I’m working to cut out as much dairy and egg as possible, except if I know the source (i.e. I pick it up at my local farmer’s market and I can ask the farmer who produced it how he made it).

But my decision to do this was based on my own research, my own experiences. It was a decision that I made and was supported by my doctor and nurse practitioner. As it turned out, it was the right decision for me and has helped alleviate some of my symptoms; it certainly is not a cure and I would be insane to get off the drugs I’m on.

I think the ideas espoused by Dr. Lee are dangerous.

To wit:

JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time.

Oriental philosophy traces these negative responses to the child’s conception and gestation. It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences.
Stress, anger, medications, vaccinations, emotional problems, drinking and drugs all affect the child throughout conception and gestation. These factors cause the parent’s energy to be imbalanced and it is passed along to the baby, which presents itself as a weakness of some sort after the baby is born.
This is one of two philosophies behind all infantile or early-childhood diseases. The other stems from environmental problems, such as radiation from electricity, poisons or pollution in the environment and household, toxins in food, and poor nutrition.
The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection.

Telling people JRA is “usually temporary” is setting them up to blame themselves when their child—shockingly—does not get well with massage, good eats and love. Auto-immune arthritis is not the result of my parents’ bad energy or stress; it’s not their fault because they would not have wished it on me had it been in their power to prevent it.

This article is taking the nosy, think-they-know-better-than attitude that I’ve experienced from family and friends and people I barely know to the extreme. If massage, affection and herbs were enough to make me feel normal, I wouldn’t be taking multiple potential toxic drugs.

What would I like to say to all the people out there who think they know better than I do or my doctors do? What I would like to say is neither politick nor productive. So, what I’ll say is this: You are entitled to your opinion as to what you think is the cause of my disease and what you think the best treatment would be. But until you’ve lived it the way I have, until you have felt the pain and exhaustion and fear, until you’ve felt the relief brought by these dangerous drugs and experience the indecision as to whether you should go on them or stay on them, your, perhaps well-meaning, advice is not worth much. Modern medicine—yes, the methotrexate, the ENBREL, the Plaquenil, the etodolac—is the only thing that allows me to get up every morning, to get dressed, to go to work, to be a good wife, to walk my dog, to do everything I do. Without them, without the right combination of them, I am in intense pain, I’m stiff, I can’t focus or remember the sentence I started just a few words ago. Without the meds, I would not be able to hold down a job, to be a productive member of society.

Yes, I do other non-medicinal things to increase my overall health: I’m a vegetarian, I do yoga. I am open to adding other things to my regimen, to my arsenal. And doing most or all nutrition or acupuncture or herbs works for you, that is wonderful. But it doesn’t work enough for me to cut out the drugs that allow me to function.

So, I guess that’s the biggest thing I would want the people who expound on their chosen “cure” to know is this: What works for one person won’t necessarily work for someone else. And what works for one person won’t necessarily keep working for her. Those of us with chronic illness have to be willing to try almost everything; but recommending the equivalent of a Band-Aid or sugar water for our very real problems doesn’t help. If you really want to help, stop talking and start listening.

why i don’t eat animals

Cover of "Eating Animals"

Cover of Eating Animals

For my long trip this past week, I knew I would need something to keep me entertained in the car. I love to read, but doing it in a vehicle usually ends in tears (or at least nausea) for me. I decided to give audio books a try, and so I downloaded “Eating Animals” by Jonathan Safran Foer (of “Everything Is Illuminated” fame) to my iPod.

“Eating Animals” is the story of Foer’s decision to delve into what exactly is it we’re eating when we pick up a pork chop or chicken nugget and pop it into our mouths, something that became important to him with the birth of his son. Though Foer is vegetarian, it’s not a book that tries to convince you that’s the only way to eat; instead, Foer discusses the horrors (and really, it’s awfully horrific) of factory farmed animals’ lives and deaths.

Before reading (or rather, listening to) this book, I was already a vegetarian. My reasons were mainly those of health: having psoriasis puts me at a higher risk of metabolic syndrome and, quite frankly, eating meat just made me feel bad and often triggered flares or mini-flares. It just wasn’t worth it to eat animals anymore.

After listening to this book, my decision to go veg is now also influenced for reasons of animal welfare, if not necessarily animal rights. The atrocities Foer mentions are unnecessary but an unsurprising by-product of a system (factory farming) that sees animals as dollar signs and workers as expendable.

I just don’t see the need to pay into that system, to give my farming proxy, as Foer put it, to some big corporation shoving antibiotics and God knows what else into these animals, keeping them as sick as possible because that maximizes profits.

So, now, my goal is to make sure none of my dollars go to factory farms: not for eggs or for dairy. In fact, I’m going to minimize my use of those two groups by either doing without or using substitutes. (If anyone knows of any good ones, please send them my way! I haven’t had much luck with dairy substitutes.)

Now, I’ve just got to convince the Professor to stop eating factory farmed meat and go with locally raised animals, and we’ll be all set. And if I could get people to stop accidentally feeding me animal products (I’m looking at you, quinoa cooked in beef bouillon) or telling me lobster/fish/poultry isn’t meat (duh, of course it is; those are all animals), then I’ll really be good to go.

So, if you’re interested in food, animal welfare or rights, public health, increases in autoimmune disorders, vegetarianism or you just eat meat, this is a must-read.

(brain) fog’s rolling in

I was waiting for it and here it is, right on schedule: the inevitable crash following a long weekend with too much driving, too much working and too many obligations.

I was almost useless today at work. I sat and stared at a blank Word document for most of the day, hoping the blinking cursor would provide inspiration. (It didn’t.) I couldn’t hold a thought it my head for more than a few seconds and I forgot doing something within seconds of doing it—like putting my keys in my purse after taking them out of my car’s ignition. I listened to every song on my iPod twice because I couldn’t remember it the first time. I’m exhausted, cranky and fighting tremendous brain fog. Not even a square (or two) or Godiva milk chocolate and caramel could bring me out of it.

So, I’m settling in my Remy across my arms and Otis at my feet and watching a few episodes of The Big Bang Theory with the Professor and then hitting the hay early—and hoping I’ll feel better tomorrow.