counting down the days

I am more than ready for my upcoming rheumatologist appointment. So ready, in fact, that I had them move it back three days, from next Thursday to Monday because I wasn’t so sure I could make it the additional 96 hours or so. It’s amazing how quickly things can go from bad to worse; just last week, I was telling the Professor that there’s no point in moving my appointment back, as it wasn’t all that big a difference to push it back by just three days. Oh, how I long to go back to last week, when that was true.

I’m trying to figure out ways I can get across to her just how poorly I’ve been doing and how far I’ve fallen in terms of feeling halfway decent. The Professor is actually coming to this appointment, so I’ve tasked him with making sure I don’t make light of it and pretend everything’s more or less OK. I’m sure that will help. I was doing well for awhile in tracking my symptoms, but lately I’ve been forgetting. (Thanks, brain fog!)

I guess I’ve got a lot riding on this appointment. I’m not really sure where we’re going to go from here. I’ve tried most of the biologics out there, and the ones I haven’t tried are so brand new that I’m not so sure I want to be a guinea pig for them. My pops wants me to try Celebrex, which he’s apparently taking for lower back pain and is convinced it’s a panacea that will make everything better for me. I told him I’d bring it up with my rheumatologist, so I guess that’s one potential new avenue for me.

I just want to feel better. I’m not even shooting for great at the moment; I’d settle for simply not as bad as I’m doing right now. Once we clear this hurdle, though, I’m going to be gunning for awesome all over again.

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(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.

be here for me

National Public Radio

Image by Kim Smith via Flickr

I was listening to my local NPR station driving home from my parents’ house the other day. A rerun of the day’s “State of Things” was playing, and as it was the run up to Thanksgiving, they were talking about gratitude. I don’t remember how the panelist got on the subject, but she said something to the effect of this: If you’re helping me because you pity me, go away. But if you want to help me because you see my struggle, you are welcome.

I found that really powerful, like someone vocalised exactly my own thoughts. I’ve read and talked to so many people (not just those of us with chronic illness) who struggle asking for help when we need it. I know I do. I also tend to snap when someone offers  me help when I don’t need it. And I think I may have figured out why (or at least part of the reason why). So much of the time, it seems people offer help because they feel sorry for you or they think you can’t do whatever it is you’re struggling with or some other reason that makes you an object of pity. And just because we’re sick doesn’t mean we can’t see that.

Sure, I can’t open a jar, turn a door knob, sit in a car for long periods of time without pain. I can’t run or wear high heels or even some days button a button. But there is still a lot I can do. And just because I can’t do those things—and I don’t necessarily know at a given time whether I’ll be able to do those things (and others) or not—doesn’t make me useless or helpless or any less of a person.

No one wants to feel like they need help all the time. Or, at least I don’t. And on those occasions I do need help, I don’t want to feel like you’re doing your good deed of the day by opening a jar of spaghetti sauce for me. But if you see I need help, lend a hand and move on, I will notice and I will be grateful. And, to boot, I’ll get to keep a little bit of dignity.

a little joy

The cast of The Big Bang Theory on a panel at ...

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Red velvet cake.

Snuggling with the pup.

Kitten massages.

Hugs from the Professor.

The Big Bang Theory.

Fresh, raw corn.

Listening to Christmas music while wrapping presents.

The smell of a real Christmas tree.

Good music.

The Story with Dick Gordon.

These are a few of my favourite things. What are some of yours?

so so sleepy

So, I just worked a nine-hour shift on my feet, running around like a crazy person (why did I agree to help out at this national retailer on the busiest days of the holiday season again?). I am exhausted. I’m about to eat some pie with the Professor, snuggled up with my pup, making sure the kitten doesn’t try to chew on the Christmas tree (again).

I hope all of you stayed home today instead of hanging out at the mall, trying to score crazy deals. If not, what did you get?

so, so thankful

 

via Snoopy.com

One of the awesome things about  being a Canadian in the States is getting two Thanksgivings. One year, I’d love for the Professor and I to be able to get up to see my family in Ontario for Thanksgiving. I haven’t been up there for one since I was at university, when my grandma was still well enough to make a huge spread—with turkey and ham—and we’d eat on my grandparents’ ping-pong table covered with a giant tablecloth.

 

But no matter. Yesterday, the Professor, the pup and I headed over to see my folks and my younger brother. Mum doesn’t celebrate the holidays, but we had a lovely dinner together anyway, with delicious food (no turkey for me, but the Professor said it was delicious) and great company.

Today, we’re heading over to see my in-laws, and my younger sister (in-law) invited some of the girls from her team, so there will be lots of people around the table. The Professor made two pumpkin pies (I was lucky enough to awake to their delicious aroma, and I don’t even really like pumpkin pie!), and I’ll add one of my awesome salads. My mother-in-law bought a tofurkey for me, so I’ll be able to have some and some cranberry sauce. Excellent.

Overall, one theme runs throughout: I have so much for which to be thankful. I have amazing friends, incredible family, a trouble-making cat who is ridiculously sweet (and who gives a great massage), a pup who wants nothing more than to cuddle, a job, Sunday school students who are just so filled with joy (and one of whose pictures of butterflies and flowers is up on my fridge), a Christmas tree all decked out and so, so much more. I am very blessed.

I hope everyone has a wonderful Thanksgiving, filled with joy.

chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren’t related to. Too much eating can lead to weight gain or eating food triggers or stuff you wouldn’t normally touch. All of it can mean pushing yourself passed your limits. It can be a disaster.

There are some things that I’ve learned through 13 years of having a chronic illness. A lot of the same things that apply during the rest of the years help during the holidays. Limit your stress as much as possible. I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. But keeping everything in perspective is essential. Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. The way I (try to) prevent overeating is I only allow myself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on Last.fm and sipping on hot apple cider or (soy) egg nog.

jingle all the way

So, I was inspired by Mariah’s decision to participate in the 2010 Jingle Bell Run/Walk for the Arthritis Foundation. While I may not be the fundraising juggernaut she is, I figured why not throw my hat into the ring, try to raise some money for a great cause and try to walk 5K—which, with how I’ve been feeling lately, will be a feat of itself.

I’ve started my goals pretty modestly—$200 and five people on my team. Well, there’s already me and the Professor, so I’ll at least have someone on my side as I’m walking (limping?) down the road. I’m going to try to get my in-laws and my parents involved, too, and that would bring me up to more than five if they’re all on board.

I know there aren’t walks in every city, but if there’s one near you, get involved! Or feel free to donate some cash to my team. It doesn’t have to be much; really anything at all would be appreciated so very much.

Participating in this run/walk is a big step for me, one that started with this blog. I can’t be the advocate I want to be if I’m hiding the fact that I do have autoimmune diseases and they’re not going anywhere unless people stand up and start making a lot of noise. We all deserve a cure. And I, for one, will not longer leave the work of advocating for that to someone else, someone who is a little more comfortable than I am being out in the open about my psoriasis and about my psoriatic arthritis. Because, really, we and I have nothing to be ashamed of; we didn’t do anything to deserve our illnesses and me hiding behind a facade of healthiness won’t do much to change people’s ideas of what arthritis looks like. Yeah, it’s definitely scary to put myself out there like this, but I think it’s something I have to do.

Here goes.

round of applause

So, I was at about the three-quarter mark in a very long day, when I ventured a peek into my e-mail, not expecting much of anything. Instead, to my surprise, I found an award!

As it has been a pretty rough day pain-wise, it was a nice little pick-me-up to get an accolade. I’m glad people find my rambling helpful; I know it certainly helps me to get stuff off my chest here, instead of either bottling it up or spewing it all over the Professor (or both).

A lot of other great blogs were honored, too. Click on the image to find out who; maybe you’ll find a new blog to start reading; I know there are some on there I’ve never ventured into before.

another recall

Logo of the U.S. Food and Drug Administration ...

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Right on the heels of the methotrexate recall from a few weeks ago, here’s another: The FDA pulled Darvon and Darvocet from the market. It is the most recent painkiller to be prescribed to me, but as it’s not one I took very often, it’s not the blow the MTX recall was. Still, it’s just one fewer weapon in my arsenal to fight the psoriatic arthritis.

It’s kind of scary that, after decades on the market, a drug that was thought to be safe could be pulled off, just like that.

It makes me wonder what we’ll learn about the drugs we’re on now 10, 20 or 30 or more years down the road. I guess it’s a balancing act for patients: On one side of the scale, we’ve got to trust our physicians, pharmacists, the FDA, everyone involved in allowing us some semblance of health; on the other, we’ve got to do the research ourselves and trust our guts if we feel as though something isn’t right for us. I guess it all really just underlines one thing for me: the need for a cure. For all of us, regardless of our autoimmune disease. One day—maybe even within my lifetime—I would love to be able to take some treatment, pill, whatever and be done with it all. Until then, though, I’ll keep slugging alone, taking whatever drug straddles the line between helping and harming.