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.

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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?

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.

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

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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.

no place like home for the holidays

One of the houses I grew up in.

After we got married, the Professor and I set up an arrangement: One year, we’ll spend Christmas with his family, and the next year we’ll spend it with mine. Sure, there are some inequities; since we live near his family, we see them every  (American) Thanksgiving, and we never go up to see my relatives for (real Canadian) Thanksgiving.

This year, of course, is our year to go up to Canada to see my family, and for awhile, it looked like we might not be able to go. We can’t afford plane tickets (and I’m not really a fan of the TSA’s new full-body scanners or the groping new pat-down techniques), and there’s just no way I was going to be able to sit for 14 hours in our fuel efficient, yet incredibly uncomfortable Honda Civic.

Then, Mum and Dad came through for us: They’re going to rent one of those giant, 15-person vans, so I can have an entire seat to myself and lay down, to make the trek. Instead of our usual one-day, no stopping marathon sprint, we’ll make the drive up to my grandparents’ house in a leisurely two.  And $200 or so later (thanks, extra fees for applying for a U.S. passport for the first time!), I will (hopefully) be good to go. And, you know, come back.

I’m still a bit nervous, though. It will still be a long time in a vehicle for someone who gets stiff and painful after 30 minutes. It’s still going to be my dad behind the wheel, and I have horrendous memories of trips to Myrtle Beach when I was a small child and being unable to stop for pee breaks until my brother or I started crying. (Mum says he’s mellowed. I guess I’ll find out.) And, if I can’t get in to see my doctor in time, who knows where I’ll be pain-wise.

Even so, I’m super, ridiculously excited. I haven’t seen my dad’s family since Christmas 2008 and my mum’s family since before that. So, merry Christmas to me! Even if I end up stuck in bed for a week, it will still be worth it.

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.

flaretown, pop: me

An illustration by W. W. Denslow from The Wond...

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This latest flare of mine has definitely taken a turn for the worse. Everything hurts, even joints that don’t normally trouble me: both shoulders, the top and bottom part of my spine (but not the centre), hips, knees, my left wrist. I feel a bit like the  Tin Man, from the Wizard of Oz; if only all I needed to keep from being rusty was a bit of oil.

I guess this means the triple therapy my rheumatologist suggested at our last meeting isn’t working. I’m not really sure what my options are now; I’ve tried a lot of different things already to various degrees of success. I guess that’s why I see my rheumatologist, to have a partner in finding the best treatment for me right now.

I tend to do best on biologics, even if they don’t push me completely into remission. I’m not too keen on trying Simponi—one of the few I haven’t been on—because of the side effects; maybe because it’s usually more effective for people with psoriatic arthritis, like me, its potential side effects are particularly devastating. But I guess I’ll hold onto my concerns and see what my rheumatologist has to say. I have an appointment next month, but I hope she can see me sooner; I’m not so sure I’ll make it to my appointment in one piece.

Still, I’m trying to look on the bright side. I had to leave work early today, but at least I got a short nap in. All of this pain and exhaustion is forcing me to slow down, which means I get to spend more time with the Professor. That’s always a good thing.

So, I wait and see, and try to keep my spirits up. At the moment, that’s enough.

handmade for the holidays

Where I live, buying local is a big deal. It’s something I never really thought much about before I moved out here, but it’s an idea to which I’m really attracted. Something about supporting small shops and artists just really appeals to me, instead of just buying into mass commercialism.

So, I have decided to make a pledge to myself (and I guess now all of you): Most of the gifts I give this year will either be handmade by me, bought from someone who made it his- or herself, or bought at a local store. This is actually pretty convenient for me, since my church is having its awesome alternative Christmas market this weekend.

I don’t have a lot of people to buy for, just the Professor (aka the mister), my dad and brother, the Professor’s immediate family (three people) and a few others, so it’s hopefully something I can accomplish.

There’s already a Flickr group set up for people doing the same (or a similar) thing. So, here I go!