daily challenge

Inspired by Elisabeth, I joined Daily Challenge. I think it will be good to help me get healthier all around. You do (shockingly) different challenges every day ranging from mental health and emotional well-being to physical health and eating better and way, way more.

If you’re on there, look me up! We can encourage each other and help each other reach our goals. Nice, right?

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one turn and now i’ve learned what it really means to see

Today’s prompt reminds me of one of the questions that we ask student athletes in a feature we, creatively, call “Athletes of the Week.” This question routinely stymies our young respondees, mostly, I think, because it’s so broad. The question? “What is your dream job?”

When I read today’s prompt (if you could do anything as a health activist—money being no object—what would it be?), I imagine I had the same look on my face that I get each week from the high schoolers I interview: bug-eyed, slack-jawed amazement. My mind was a complete blank.

What would I do to benefit the arthritis community, the chronically ill, those with invisible illnesses if money or anything else was no object? Where do I even start? There are the obvious ones—universal healthcare, universal access, ending discrimination, affordable drugs—but is that enough? An affordable cure would render everything else moot, so that seems like a no-brainer.

But how much control to I really have over that? Not much. Which brings me to, perhaps, a more realistic question: What would I do based on the very real limitations that I have? I think raising awareness is huge; when most people think arthritis, what they’re really thinking of is osteoarthritis. Having people know that there are multiple kinds of arthritis—kinds that are nothing like what you’re got in your little finger or what Grandma’s got in her knees—well, that would be a start.

Still, it’s not enough. I think what I’d really like to achieve is the call to action: getting people to care enough to donate money, participate in walks, to write letters to the editor and to their members of Congress. Basically, I want for autoimmune arthritis and psoriasis—hell, all these diseases we all struggle with—is what Susan G. Komen for the Cure has done for breast cancer. I want people to associate the colour blue immediately with arthritis the way they do pink with breast cancer.

Can I do it on my own? No, ma’am. But maybe with all of us working together—joining forces as those with autoimmune diseases instead of each of us focusing solely on our disease—it could happen.

 

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

always something there to remind me

It all started about seven years ago.

I had just gotten home from an amazing vacation in Bermuda visiting some friends. I was sitting in my first class at a new school when I got the first twinges of what I would eventually be told was psoriatic arthritis. The nearly yearlong wait from first symptom to first rheumatologist appointment was horrific; the only thing my regular doctor would give me while I waited was an old-school prescription NSAID—so I mainlined that and took far more than the recommended daily dose of Aleve.

It’s crazy to think that one thing changed my life so drastically. I’ve had flares and good periods, been on so many drugs and met a ton of awesome people, in real life (thanks National Psoriasis Foundation volunteer conference) and online (thanks, blogging). But I guess it hasn’t changed much at the same time. I’m doing well in the field of my choice—one that’s demanding and difficult for the healthy. I’m married. And I’m happy.

As I sit here, thinking about my life and enjoying my drink of the month (a Dogfish Head Punkin Ale, yum), I’d say I’m doing pretty well for myself, with or without chronic illness. That’s not to say life is perfect—I’ve still got more pain and inflammation than I’d like, and I’m still grappling with some potentially life-altering decisions. But overall, life is pretty good. And I’ll take that.

start fresh

Where has September gone? I feel like just yesterday it was the end of July.

Anyway, this lovely meme has been making the rounds for Invisible Illness Week. I’ve done it since 2009, but it’s always fun to see what’s changed.

1. The illness I live with is: psoriasis and psoriatic arthritis.
2. I was diagnosed with it in the year:  psoriasis in the late 1990s and PsA in 2005.
3. But I had symptoms since: Psoriasis was a quick diagnosed, but I was diagnosed with PsA in 2006, then changed and now I’m back to PsA again.
4. The biggest adjustment I’ve had to make is: changing my footwear options. Seriously, people: How hard is it to make cute, comfortable heels?
5. Most people assume: that only old people get arthritis. Ugh.
6. The hardest part about mornings are: stopping myself from hitting the snooze button. Again.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: my iPhone. Seriously, how did I get along without that thing?
9. The hardest part about nights are: when I’ve overdone it and everything hurts.
10. Each day I take 10 pills and two weekly injections. 
11. Regarding alternative treatments I: believe they are a part of my treatment regimen but not the whole solution. I don’t function well without the aforementioned pills and injections.
12. If I had to choose between an invisible illness or visible I would choose:  definitely invisible. I’ve kind of got both; psoriasis, when it’s flaring, is extremely visible. It’s better to be incognito, I think.
13. Regarding working and career:  I love my job. Love, love, love it. Who I am is largely defined by what I do. I would put up with quite a bit in order to be able to work.
14. People would be surprised to know: that I’m in my 20s, apparently. My writing voice must sound older because, in real life, people constantly ask my if I’m a student at nearby major university. It’s the freckles, I think.
15. The hardest thing to accept about my new reality has been: that I had a new reality. It’s kind of a bummer.
16. Something I never thought I could do with my illness that I did was: run a newspaper. Successfully. (Though I guess it’s a little early to start celebrating on that front. Stupid bad economy.)
17. The commercials about my illness: I don’t have cable, so I don’t see them.
18. Something I really miss doing since I was diagnosed is: not needing nine hours of sleep to feel fully functional.
19. It was really hard to have to give up: I’m trying not to see things in a pessimistic way. So, instead of giving up heels, say, I’m trying to see it as a chance to expand my rockin’ flats collection.
20. A new hobby I have taken up since my diagnosis is: sewing.
21. If I could have one day of feeling normal again I would: drink some peach sangria and stay up all night reading.
22. My illness has taught me: that even bad things can have upsides.
23. Want to know a secret? One thing people say that gets under my skin is: “You have arthritis? So, what? I totally have that in my finger/toe/other insignificant joint.” Jerks. I have it in just about every joint and mine happens to be an autoimmune disease, so not quite the same.
24. But I love it when people: just accept me the way I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Pretty much all of Job.
26. When someone is diagnosed I’d like to tell them: that they are not alone and that, thought it may seem like it right then, life isn’t over. It’ll just be different.
27. Something that has surprised me about living with an illness is: just how many others are dealing with some kind of chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: get me supplies for the greatest bubble bath of all time.
29. I’m involved with Invisible Illness Week because: our diseases are only as invisible as we are.
30. The fact that you read this list makes me feel: well loved.

i remember you

When I first was put on Plaquenil (or, rather, the generic hydroxychloroquine), it absolutely destroyed my appetite. I remember not really eating for the first couple of weeks I was on it, before my desire for sustenance returned, albeit much smaller than it previously was.

After I stopped taking it last summer, my appetite returned (as did all the weight I’d lost while on it, boo). So, when I was put back on the drug at the end of last year, I was expecting much the same thing: a severe reduction in my appetite. It didn’t happen; in fact, it seemed as though I was hungrier than ever (which is a side effect I associate more with the dreaded ‘roids than with this anti-malarial).

At least, this was the case until a couple of weeks ago. I just stopped being hungry. At all. There were a couple of days where all I had was a cup of coffee (thanks, Dunkin Donuts K-Cups) with a big of coconut milk creamer, a few bites of an apple and maybe a latte or a cup of tea. Now, tough, I’m up to a cup of coffee, some kind of small lunch and a light dinner. After doing some research, apparently what I’ve experienced isn’t that uncommon.

But the side effects of some of these drugs can be crazy, from increasing or suppressing appetite, changing our emotions or even altering the texture of your hair (thanks, Arava, for giving me the wavy hair I always wanted)—and that’s without considering some of the more dangerous potential complications. But I guess that’s the price we pay for feeling (mostly) normal.

psoriasis isn’t contagious but awareness is

I got this today in my mailbox, and I think I’ll be giving it a go:

Psoriasis isn’t contagious, but awareness is! Each August, the National Psoriasis Foundation sponsors “Psoriasis Awareness Month,” dedicated to raising awareness about psoriasis and psoriatic arthritis, dispelling myths around these diseases and educating the public. This year, we are putting the lens on life with psoriasis and psoriatic arthritis, with its ups and downs, frustrations and realizations. Do you have a story to tell? We invite you – and the followers of your blog – to participate in the first-ever psoriasis and psoriatic arthritis online film festival.

Submit a short video for the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival in one of six categories:

Youth – Calling all kids! Get out your video camera and show us what it’s like to be young with psoriasis/psoriatic arthritis.

Action – Have you taken action recently to help find a cure? Show how you are taking a stand through grassroots advocacy and volunteer activities.

Comedy – Are psoriasis and psoriatic arthritis funny? No! But you can help bring a lighthearted spin on living with chronic disease when you submit a comedic video.

Horror – Sometimes dealing with a chronic disease can be downright scary.

Music video – Got a song about psoriasis or psoriatic arthritis? This category encourages you to let the music flow.

Animation – Superheroes, aliens and talking animals can play a starring role when you tell the tale of life with psoriasis and psoriatic arthritis. Not an animator? Try this software: www.xtranormal.com.

Competition is open to anyone with psoriasis and/or psoriatic arthritis and the people who love them. The grand prize – as determined by the most online votes – is a $500 Visa Gift card. Deadline to submit a video is Aug. 28, 2011.

Read the Festival FAQ and the competition rules and regulations at http://www.psoriasis.org/pam.

27

I just about an hour, I will officially be 27.

Somehow, 27 seems much, much older than did 26—it’s that much closer to 30 (which, thanks to Lindsay, I am totally looking forward to!)—but it’s not really.

It’s been a bit of a crazy year: I went from doing well to a crazy flare and back again; I went from hating my job and actively looking for something else to getting promoted and turning down other opportunities; the mister and I celebrated three years of marriage; and I’m coming up on about 13 or so years with psoriasis and 7 years with psoriatic arthritis.

Today, though, I’m not thinking about any of that. I’m just enjoying time with the mister and my in-laws, getting a mani-pedi and some Starbucks (my relaxation fix of choice) and being grateful that I’m alive and in relatively good health.

always something (there to remind me)

Flourless Chocolate Cake with Chocolate Glaze

Image by Rooey202 via Flickr

Now that I’m nearly vegan—and my lactose-intolerant insides thank me for finally going back to being dairy-free—I’d noticed that I was still feeling gross sometimes after eating, the way I would after I would down some ice cream before, and I couldn’t figure out why. But then it hit me: I felt awful after eating stuff with gluten in it.

So, that’s what I’m trying next: going gluten-free. As I was doing some research as to the best way to go about this, I ran across an interesting study published in 2001 by doctors at a Swedish university (here’s a WebMD article that breaks it down) that had some really interesting findings about gluten and autoimmune arthritis, namely that a significant minority of people with (in this case) rheumatoid arthritis round relief in a gluten-free diet.

That’s really exciting to me; going vegetarian and then vegan has helped somewhat, especially in the face of the six-month Enbrel effectiveness dip I always seem to hit. If going gluten-free was even as effective as that, I’d be feeling pretty darn good. Of course, it won’t be easy; being a vegan already restricts what I can eat, and obviously going gluten-free would be even more restrictive. Still, it can be done (and I found a vegan GF cookbook!). And, even if it doesn’t help, it’ll certainly be healthier, which is another benefit.

But for you GF folk out there: What are your favourite resources?

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.

from end to end

Now that enough time has passed, I feel like I can really delve into the impact my escapade to the Washington, D.C., area for the National Psoriasis Foundation‘s National Volunteer Leadership Conference and Capitol Hill Day a couple of weeks ago.

As I said before, I asked for a preemptive steroid taper  to help me get through the drive to D.C. and all the walking I knew I’d be doing once I got there. I finished that today, actually, though my NP was awesome enough to add a refill to it in case I need a quick taper again. And despite the fact that I managed to stave off prednisone weight gain by working out on our borrowed NordicTrack just about every day and the crazy thirst that made me have to pee 4,506,597 times per day and the oddly vivid dreams and nightmares, I know I would not have survived that trip very well without it.

The Professor and I went up to the D.C. area a few days before the conference for two reasons: to see the sights (like the Newseum!) and to give me time to recouperate from being in the car for several hours. We timed it pretty well and ended up not hitting any traffic around Richmond, Va., or D.C. Our first full day there, we took it pretty easy, just running a few errands and grabbing the first of many cinnamon dulce iced soy lattes from Starbucks. (Yum.) On Saturday, the day before the conference, I seriously overdid it. We went to the Newseum (!)—which was amazing; we didn’t have time to see everything, so we saw the Katrina, 9/11 and Berlin wall exhibits and the Pulitzer gallery—before hitting the Washington Monument and the World War II memorial. That was a ton of walking, and my hips were sore for days after. But, thanks to the prednisone, I was able to push through.

The conference itself was amazing; if I ever get the chance to go again, I would definitely built in more rest time so I felt able to do more socializing! But it was great to meet people who so totally got it—as well as people from the National Psoriasis Foundation that I’d talked to on the phone or by email before. It was nice to get a face to go with the voice or the name—especially since not a one looked the way I pictured.

Overall, now that I’m back home and back into my regular crazy routine, all of that didn’t knock me out the way I had expected it to; my psoriatic arthritis is still not perfectly controlled but not any worse than it was and my skin still hasn’t decided whether it wants to flare or not, but it hasn’t been pushed over the edge (yet). So, all in all, I guess the trip was a success in more ways than one.