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.

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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?

guest post: time to fit in

Alyssa Jacobs, an internet writer who enjoys many topics like health, politics, lifestyle, fitness and skin care, works with AcneCenter.com to give the best reviews of various acne products. She asked to write a guest post, and I hope you enjoy reading it as much as I did. Take it away, Alyssa!

Time to Fit In

The social world of today is a strange, scary environment. Fitting in isn’t always the easiest thing to do nowadays. The social butterfly has to be sure to fit in with the business world, friends, family, and now even social networks. What is an individual to do? Are we supposed to have a different social structure for every relationship? Are we to make fitting in different with everyone? The answer is no, fitting in with everyone is not the solution. You have to learn to fit in with yourself.

Fitting in with yourself is something completely different from fitting in with others. However, in a way they are mutually beneficial. When you can find your own niche and be comfortable in your own skin, people take notice of that. A new-found confidence will exude from you and that can help you to know your audience, and still be yourself, as opposed to wretched attempts to fit in with everyone.  It is very important to keep your foundation of moral and personal standards. Being a people-pleaser is, in itself, is not very pleasing to yourself.

It isn’t easy to fit in with yourself. Everyone has unique unique characteristics that define who we are. The important thing to note, is that you may spend many years finding out who you are, in all areas of your personality. The one thing that is important during this time is not to change for people or define yourself by others. Relationships with others are supposed to be mutually beneficial. That doesn’t mean they always are going to be pleasant. For example, you may not have the most pleasant relationship with a boss, but the benefits are a career, networks, and references. If you chose stray away from your moral barriers to make things simply more pleasant, then your mutually beneficial relationship is no longer present. The benefits you have to offer as an employee is to make the company more money, not to be everyone’s best friend.

Still others might think they have greater issues fitting in. As a young adult, or teenager, we are in the most socially awkward stage in our life. All of the sudden you are growing into a new body, you might go on your first date, and for the first time you might have to deal with acne. Usually at this time, all someone is looking to do is fit in. Look at it this way, if you can find an identity, people who are unsure of themselves might just want to fit in with you. This approach makes for a much better situation. If you can be happy with yourself, you won’t look for others to fill that void, and therefore will be a better person for it.

For all of us, fitting in can be a scary process. There is nothing wrong with hearing advice and trying to better yourself, as long as you are not compromising your beliefs. My advice for fitting in is to first try fitting in with yourself. You will be happier, able to express yourself, your confidence will grow, and people will take notice. So go ahead and try it; be a little selfish, and start doing things for you.

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.

we, the patients

I think just about everyone who deals with chronic illness has had at least one terrible doctor. I know I have: I’ve had a dermatologist who told me psoriasis is only a skin condition and was the result of a reaction to using a new shampoo (both wrong, by the by), and I had a rheumatologist who only wanted to treat me with pain pills (which is horrible for so many reasons).

Everyone has the right to adequate medical care, and part of that is seeing a doctor who is willing to work with you; of course, the patient must be willing to shoulder some of the burden for his or her own health, too. So, the National Psoriasis Foundation Medical Board and Board of Trustees worked with Dr. Jerry Bagel, director of the Psoriatic Treatment Center of Central New Jersey and a clinical associate professor at Columbia University, to create a patient’s bill of rights to make sure both doctors and patients know their responsibilities in making sure psoriasis and psoriatic arthritis are properly treated.

Some of the highlights are:

  • People with psoriasis and/or psoriatic arthritis have the right to receive medical care from a healthcare provider who understands that psoriasis and psoriatic arthritis are serious autoimmune diseases that require lifelong treatment.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be actively involved in managing their disease by participating in healthcare decisions, closely following treatment plans recommended by their healthcare providers, and making healthy lifestyle choices to ease their symptoms.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be honest with their healthcare provider about their health and lifestyle decisions that may affect the success of his or her treatment plan.

The rest of the document is filled with other good expectations for doctors and patients. I hope this helps doctors and patients communicate with one another and realise that we’re all on the same side—or, at least, we should be.

brace for impact

Today was supposed to be a good day.

The weather’s nice. It’s Friday. I bought myself some sunflowers at the farmer’s market, and they’re making my little office cheerful and bright.

But then some jerk guy decided to back up into my car.

(OK. I have tried twice now to get WordPress to post the full version of this blog. Hopefully third time’s the charm.)

Luckily, no one was injured and the damage to my car is minor. Things could most certainly have been worse. But it’s brought something into my life that I just don’t need right now: more stress.

I can feel myself on the edge of a flare; I feel as though if I stray to far to the left or right, I’ll plunge on down into one. To prevent that, I’d been trying to take it easy and to really take care of myself: eight hours of sleep per night (that one can be tricky), full compliance on meds, gentle workouts, good food. But all the self-care in the world won’t prevent someone else from blundering in and making a mess. And that’s what this guy did when he hit me; of course, he’s making it worse by trying to come up with different scenarios of how this was my fault that he backed his car into mine, but that’s another story.

As always, I can’t control how other people act, but my actions are up to me. And so I’ll be taking it easy this weekend and hoping against hope that I can pull myself back from the edge of a flare. Fingers crossed.

time to end psoriasis

The United States Capitol in Washington, D.C.

Image via Wikipedia

Guys, the National Psoriasis Foundation’s National Volunteer Leadership Conference (if you follow me on Twitter and saw a lot of #psonvlc, that’s what it was referencing) was awesome—and a great excuse to take a few days off work and hang around Washington, D.C. I’ll write more about the trip itself—and its impact on me, health-wise—later.

The conference was really great; there was an exhibit hall with vendors and information, all kinds of breakout sessions on everything from raising awareness to raising money and—of course—the big event: Climb the Hill for a Cure day, when psoriasis advocates hit up their Congressional representatives for support of the Psoriasis аnd Psoriatic Arthritis Research, Cure, аnd Care Act of 2011. (I was unable to go to that, unfortunately, since Tuesdays are a big day in newspaper-land.)

The breakout sessions I attended were on raising awareness on social media and in the traditional media (I actually got to talk a bit about being a blogger and the editor of a newspaper, though the latter half on newspapers was more of a rant on what annoys me and leads me to not publish things in the paper), a round-table discussion with some of the other mentors in the One to One program and a presentation on the highlights of psoriasis research and drug development. If you guys want, I can post my part of the social media presentation here; I’m also trying to get a hold of the PowerPoints from some of the other presenters, since I’ve had requests from people who weren’t invited to the conference. If and when I get them, I’ll post ’em here, too.

But one of the coolest parts of the conference was meeting so many amazing people, like Marie B and Kathryn and Chris, mum to Carly and Katelyn. It was so refreshing to be in a room with people who get it, who have gone through what I’ve dealt with because they have psoriasis or they have psoriatic arthritis—or they know and love and support someone who does. I left the conference feeling like anything was possible. Just a few days later, I’m struggling with putting that feeling into action, but if nothing else, I left feeling hopeful. And that’s a good start.

already pretty: body gratitude in the face of illness

I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.

Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).

But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.

Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.

But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.

#HAWMC day 27: quotable

I love a good quote. The right one can turn one’s day completely around. It can make you feel strong in the face of a bad day or completely turn your attitude around.

One of my most well-read posts was one where I wrote about the “Litany Against Fear.” It’s one of my favourite posts, so here it is again, for your reading pleasure:

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

#HAWMC day 26: totem

Hoaxed photo of the Loch Ness monster

Image via Wikipedia

I had a hard time coming up with a spirit or totem animal to describe my condition. I mulled it over all day, bringing up and discarding animal after animal. I was about to give up and just phone in something for my blog, when it hit me; it had been staring me in the face all along.

My spirit animal is definitely the Loch Ness Monster. (I know, right?)

Just like the good ol’ Nessie, psoriasis and psoriatic arthritis are kind of a mystery; people really aren’t sure what causes it, and there’s certainly no cure. The information floating around in people’s minds about it is hazy and fuzzy, like photographic evidence of the Monster. Some people don’t believe it’s real, just like some I’ve encountered with their kooky opinions on autoimmune arthritis.

My experience with psoriasis and psoriatic arthritis have been monstrous at times, too; the flares, the embarrassment, the pain, the oddity of having arthritis at 20. And the worst part: Never knowing when I’m going to flare, when I’m going to feel bad and when I’m going to feel good—or at least better.

I kind of like the idea of equating my diseases to an animal, especially a potentially fictional one. (Just kidding—Nessie is totally real.) It’s certainly got the potential of making me smile when I’m feeling especially crappy—and that’s definitely something I can use in my arsenal.