#HAWMC day seven: stop calling, i don’t want to talk anymore

Well guys, I bucked up and recorded a voice memo to my health. Because I go the extra distance. For you. You’re welcome.

Click here, since apparently I can stream audio through WordPress without a space upgrade. If anyone knows a good audio streaming site, let me know!

#HAWMC day four: panacea

Guys, I have some great news: To cure autoimmune arthritis, all we have to do is eat all natural, organic foods and poof! All better. I know, right? Such a relief.


It seems everyone has a favourite “cure” for autoimmune disease, but one of my personal faves is healthy eating. (Yes, this is coming from someone who has had limited success with a vegetarian diet and who is considering going gluten free.) But it’s the extremes to which this can be taken—literally, as if eating raw carrots at every meal will suddenly make me all better—that makes it so bizarre.

My favourite cure-all for psoriasis has definitely been dunking the afflicted area in apple cider vinegar. Because, you know, that’s sounds completely sanitary.

Then there’s the one that says Tylenol will make me all better. (And don’t even get me started on those arthritis caps! I hate those dang things.)

Though it’s good to laugh at all the ridiculous suggestions we get for psoriasis/psoriatic arthritis/whatever cures—and I know I’ve heard some doozies, like literally that love would cure me; as great as love is, I don’t think it can do that—it just goes to show how important health advocacy is, even if it doesn’t feel like that’s what we’re doing. Even if it feels like we’re just blogging into a void, eventually our voices will all join together and make a chorus too loud to ignore.

And then we can go around telling healthy people how to live. Yeah, that’ll be the day.

nerd i am

I am

Image via Wikipedia

When we first learned the Professor would be teaching at his alma mater for at least an academic year, we were ecstatic. When we learned he would have a writing intensive section, I offered to go over his students’ papers for grammar and style. For their last papers, I got that chance.

Today, I got through all but three of the papers during my down time at work. Reading the work of these university students—most of them upperclassmen—reminded me of two things: how much I love copy editing and how little most of these kids know about the English language. (For the love of God, possessives and plurals are two different things!) Even though most of them were absolutely terrible, I still do love words.

But, with writing articles, editing pages and reading papers, I’m all worded out.

as big as saucers

So, in my continuing effort to take good better care of myself (see: adding a PCP to my army of doctors), I had an appointment with a new ophthalmologist today. I had my prescription checked (my left eye is now worse than my right) and she checked to make sure the Plaquenil hadn’t caused any damage (it hadn’t).

But, she decided to dilate my pupils several hours ago, and they are still ginormous. That, truth be told, makes writing really difficult.

So, instead, I leave you with a video of a flash mob performance of “Safety Dance.” You’re welcome.

all i have to give

via We Heart It

Giving back is hugely important to me, especially now that I have a chronic illness.

Before my slow downward turn, I volunteered at a local animal shelter; the same one, in fact, where the Professor and I eventually adopted Otis. I worked with the cats and was on the education committee, bringing dogs into elementary schools to teach kids how to respond appropriately to animals. I loved it, but it was a lot of hard physical work, so I eventually had to give it up.

Now, I teach Sunday school to a group of kindergarten-age kids, I volunteer occasionally with the middle school youth group at my church, and, as I’ve mentioned before,  I’m a peer mentor for the National Psoriasis Foundation. I enjoy these for different reasons, I guess in the end it really just boils down to two: I like helping people, and it makes me feel good.

Being around small children is rejuvenating, in a way; they are so filled with energy and life and light. The kids in my class love to laugh and draw and play Memory. They find the simplest things so joyful: colouring a picture, playing outside, talking about their pets and families. But the subject matter is also, of course, really wonderful to talk about. Talking to kids about faith—and about how they see God—is just really encouraging. I always walk out of Sunday school with a smile.

Now, volunteering with the National Psoriasis Foundation moves me in a different way. I’m connecting with people who, like me, have psoriasis or psoriatic arthritis or both. Some are older; some are younger. But we’re all bound together by one simple fact: We know what it feels like. I’ve had psoriasis for more than a decade; PsA joined the party about seven years after my initial diagnosis. I’ve had good doctors and bad doctors. I’ve been on drugs that helped, drugs that hurt and drugs that did nothing at all. The common thread is that I have been through what they have been through. Though people in their lives may be sympathetic (or not, unfortunately), I can be empathetic. That is very powerful. None of us are alone.

Volunteering, getting involved in whatever way I can, it’s essential. In giving to others, I also receive. And for someone who always has to worry about counting spoons, getting a few back every now and then feels like a blessing.

lighten up! it’s just fashion

I used to wear heels every single day. Seriously. Going to work? Heels. At the grocery store? Heels. Running on the treadmill? Heels. OK, maybe not on the treadmill, but you get the idea.

Now—and it’s really embarrassing to admit this, even to my fellow spoonies—I have been known to wear these: That’s right, Sketchers Shape-Ups. Comfy, they are. Stylish, they are not. (The horror.)

I understand having to change what you wear because of a chronic illness. Hell, not only have I (mostly) given up heels (for now), while I’m waiting for my likely de Quervain’s tenosynovitis to heal, buttons are difficult at best, though I have developed a method of buttoning up shirts and pants that doesn’t involve using my left thumb. (It’s probably best if you didn’t ask how. It involves tears, cursing and maneuvering my fingers in ways God never intended.)

But I don’t think ugly, dumpy, frumpy, elastic waist-banded clothes should be our only options. There are ways to look put together—even fashionable—with psoriatic arthritis or rheumatoid arthritis or ankylosing spondylitis or any other potentially debilitating disease.

For days when I don’t have the manual dexterity needed to unclasp and re-clasp a necklace, I have a few giant ones I can pop over my head. When I don’t want to fight with putting on tights, there are pants or skirts and dresses with higher boots. When buttons are a no-no, I thank God for pullover sweaters and tops.

So, seriously, ladies: Step away from the elastic waist pants. You deserve better than that. Oh, and if anyone finds a comfy pair of heels? Put me on speed dial and let me know. For real.

(As an aside, season two of Project Runway was so awesome—until Chloe won. Seriously, judges: What were you thinking?)

to brighten your day

My cat, Remy, has hit upon a new game she likes to play. After we shut her up in the office for the night (since she has a rather unhealthy tendency to chew on wires) but before we head into our room to go to sleep, she’ll stick her tail out under the door in the hopes that one of us (OK, me) will try to grab at it. When we (I) do, her little paws will shoot out and try to play with our hands.

It’s quite adorable, actually.

So, the other day, I decided to set my camera down while she was doing it, and this is the result. It certainly brightened my evening when I saw it. Hopefully, it will do the same for you.

the yellow dart

So, I had my first foray into the wilds of methotrexate injection tonight.

When I asked my pharmacist how to go about doing it, she said she wasn’t sure. Apparently, she decided to call a friend who worked at some clinic, and she said to just inject a dose’s worth of air into the bottle and then go about my business.

Since those directions were less than stellar, I turned to the internet for help and came up with the Canadian Rheumatological Association‘s methotrexate injection sheet. That was more helpful.

So, I followed the instructions: I washed my hands with soap and warm water. I cleaned the area I was going to inject (my thigh, in case you were wondering). I injected half the dose’s worth of air into the vial. I pulled out the dose — which, incidentally, I’ve decided to nickname The Yellow Dart, since metho is yellow and the CRA kept referring to the syringe as a dart.

As usual, I had to make a few practice runs before jabbing the needle into my subcutaneous layer. This comes from when I injected Humira, which hurt like crazy. This was before they had the auto-injector pens (which I used for Enbrel and prefer), and it was always a dramatic affair for me to inject it.

Anyway, once I got through that, The Yellow Dart didn’t sting anywhere near as much as Humira or Enbrel. It doesn’t look like I’ve got any site reaction, which was immediate with the biologics. We’ll see how it goes, though. I’m hoping the horrific, gaping mouth ulcers don’t make a reappearance and that I don’t get any of the nasty side effects. I guess we’ll just have to wait and see.

calamity! hilarity!

OK, so I was finishing my marathon sprint through Mariah’s blog (which I had tons of time for today, since my boss is super slow and super disorganized on our production day [I work at a newspaper] ), when I came across this lovely gem about her, her fiance, a bad magazine and a big jerkface.

I laughed out loud when I read this one. Then, I e-mailed it to myself so I could show it to my husband when I got home.

Seriously, if you don’t think this is funny, then I don’t think even more cowbell could improve your sickness.