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.

a victory—with pockets

I ordered myself a sewing machine (a Brother CS-6000i) as an early birthday present. It came in the mail a few weeks ago, and I love it. My first project—what else? A tablecloth for my (teensy) sewing table—was a bit of a disaster, with terrifically crooked seams. I did, however, learn some lessons that I applied to my next project: a skirt tutorial found on Pinterest.

It took me all last weekend. I ripped apart many a seam until they were all straight as arrows. Still, it’s not perfect, but I absolutely adore it. It even has pockets, people! (Pockets are crucial in my line of work.) And, better yet, it has an elastic waist but doesn’t look frumpy. Since my hands have been giving me trouble lately, a cute skirt with no buttons or zippers to fumble with is just what the doctor ordered.

Plus, I love that I have a hobby that I can do even when I’m not feeling great. With jewelry making, it my hands are sore and thick, it’s hard to manipulate tiny beads and thin wire. But, I can push a yard of fabric under the needle even with club hands. So, hooray!

keeping up

via Glamour

So, apparently Kim Kardashian has psoriasis. I’m not so sure I like the tone of this L.A. Times blog post, but at least the writer mentions it is an autoimmune disease (though the off-hand mention of methotrexate as a treatment for it leads me to believe someone didn’t quite do his homework, despite the mention of the National Psoriasis Foundation’s website). But, I digress.

I was lurking on some of my psoriasis boards, and I came across something interesting—and it was the same on pretty much every forum I visited: People universally wanted Kardashian to step up and use her notoriety to gain some recognition and awareness for the disease (as if showing the entire world [that watches "Keeping Up With the Kardashians," at least] the moment of her diagnosis wasn’t enough). I was pretty surprised at my reaction.

I completely disagreed with them.

I know, right? Isn’t that exactly what I’m trying to do with my little blog? Sure, it is. And it would be awesome if she decided to become a spokeswoman for the NPF. I would be right behind her. But I’ve had psoriasis for more than a decade, and it took most of that time for me to accept it, to be willing to talk about it with others. How can I expect someone else—regardless of where she falls on the obscurity-fame continuum—to be I bigger person than me? To be braver than me? Hell, I still blog under a pseudonym, and she let perfect strangers into her doctor’s office with her, let them watch her reaction to finding out she has a lifelong autoimmune disease.

Honestly, I think even if she didn’t lift a finger to raise any more awareness about psoriasis, I’d say she’s done quite a bit. After all, we’re all talking about it, right? And so are quite a few people. Searching Google for “Kim Kardashian psoriasis” brings up about 554,000 results. Yowza. So, right on, Kim.

always something (there to remind me)

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?

Related articles

• Wheatless Wednesday: Gluten-Free Funfetti Cupcakes…. (rollinoatstampa.com)
• Adopt A Gluten-Free Blogger: Diet, Dessert and Dogs (Adzuki Bean Spread) (tastyeatsathome.wordpress.com)
• The elusive flavor of gluten-free beer (sfgate.com)

medical jargon: studies show anti-TNF drugs don’t raise cancer risk

There was an interesting Arthritis Today Magazine article sent to me by the Arthritis Foundation not too long ago: Several studies have found there is not statistically significant cancer risk for those who take anti-TNF medications, like Enbrel or Remicade.

This could be a big deal; even though I take a TNF-blocker (hello, Enbrel) and I’ve been on several others in the past (hi there, Humira and Remicade and Orencia) because they’re the only things I’ve found so far that make my psoriatic arthritis manageable, I was and remain aware of the potential for an increased risk of cancer. I imagine all of us on these types of drugs have that knowledge in the back of our minds, and I’m certainly aware of people who decided not to take these drugs because of that risk. It’s a choice only each of us can make.

But, perhaps, this will put some minds at ease and allow more people to get on these treatments—if that’s what they want. I know they’ve helped me, and I wouldn’t be able to do everything I do without Enbrel, as I found out last year when I went off it for just six months and quickly found myself in one of the worst flares I’ve ever experienced. So, despite the risks, I’ll take my weekly injection; even so, this will let my mind rest a bit easier.

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.

just desserts: vegan peanut butter chocolate chip cookies

I love peanut butter chocolate chip cookies. Love. Them. Before I went vegetarian/vegan, I would get these delicious cookies from the local grocery co-op near my work; however, as they were made with dairy and eggs, I had to give them up.

Then—inspired by Chocolate-Covered Katie—I realised I could just turn my favourite peanut butter cookie recipe vegan. So, I did. And the results are delicious! (Except when I get too impatient to eat them, and I take them out before they’re fully done. They’re still tasty, then, but they don’t stay together very well. Oops.)

Amazing vegan peanut butter chocolate chip cookies

2/3 cup peanut butter

2/3 cup vegan margarine

2/3 cup brown sugar (I’ve also used agave, with yummy results. Use less and reduce the liquid if you go that route)

1-1/2 teaspoons Ener-G egg replacer

2 tablespoons water

1 teaspoon vanilla extract

2 tablespoons non-dairy milk (I’ve used soy and almond)

3/4 cup non-bleached all-purpose flour

1/2 teaspoon baking powder

1/8 teaspoon salt

non-dairy chocolate chips to taste

 

1. Preheat oven to 375 degrees. Mix egg replacer and water in a small bowl. (I use a whisk. You really need to make sure there aren’t any hidden lumps, which is fun.) Set aside.

2. In a big mixing bowl, cream together peanut butter, sweetener and margarine.

3. Mix in soy milk, egg replacer and vanilla.

4. Sift in flour and baking powder a bit at a time. Add salt.

5. Add chocolate chips.

6. Place cookies on a lightly greased cookie sheet.

7. Bake for 8 to 15 minutes or until edges are lightly browned but centre is still soft.

8. Let cool and enjoy!

 

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.

i love ‘running with scissors’

Image via Wikipedia

The Professor and I headed out to local big box bookstore today to spend the gift card that was sort of an early birthday present for me. (It’s complicated.) The book I planned on buying—”Extremely Loud and Incredibly Close” by Jonathan Safran Foer—was not available at my local big box bookstore, so I whipped out my trusty iPhone and looked for authors similar to him (and, incidentally, Kurt Vonnegut).

And I’m super glad I did.

One of the first hits was for Augusten Burroughs‘ memoir “Running With Scissors.” I’m not very far in, as I’m in the midst of typing up meeting tape and then writing an article on said meeting, but I’m loving it so far. Why am I telling you this? Imagine my surprise when, on page 12, there’s a mention of psoriasis. No, really:

My father was otherwise occupied in his role of highly functioning alcoholic professor of mathematics at the University of Massachusetts. He had psoriasis that covered his entire body and gave him the appearance of a dried mackerel that could stand upright and wear tweed. (Burroughs, p. 12-13)

While not exactly the kindest description of someone with psoriasis, I have to admit that certainly conjures up a vivid image—and one that’s not entirely unrealistic.

Just a few paragraphs later, we learn Dad has arthritis, and—though it’s not explicitly stated—it’s likely he has psoriatic arthritis.

My father had a bad knee. Arthritis caused it to swell, so he would have to go to his doctor and have it drained. He limped and wore a constant pained expression on his face. ‘I with I could just sit in a wheelchair,’ he used to say. ‘It would be so much easier to get around.’

Dad may not be the best representative of us chronically ill, but it’s better than nothing. And, since it’s a memoir, it’s not like Burroughs can change his dad. Regardless, it was nice to see someone with psoriasis and (psoriatic) arthritis in the popular media. So, kudos to you, Augusten Burroughs. And thanks.

n.y. times take on psoriasis

Yvetta Fedorova / N.Y. Times

The N.Y. Times had an interesting article about psoriasis today.

The author, Jane Brody, hits the high (or low, depending on your perspective) points about having the disease: the shame and embarrassment that so often is an unwelcome side effect; the underlying immunological factors; that genetic and other factors contribute to psoriasis; the various comorbitities that can wreak even more havoc on a person’s life.

And she should know; her husband has psoriasis (well, she writes he had psoriasis—but we all know that even if it’s in remission, it’s never really gone).

Brody shares some good tips for psoriasis sufferers: don’t scratch the legions—no matter how intense the itch; be patient; moisturize, moisturize, moisturize; and, of course, seek treatment.

Overall, I thought it was a good piece, though I would have been interested in hearing from her husband, to hear more of how it has been for him in his own words. Maybe it’s just me, but I like hearing the stories of others with the disease; I like swapping war stories and treatment solutions, like finding out the crazy things doctors say to us that weren’t funny then but have to be funny now.

Most of all, I like it when people with the disease are allowed to speak for themselves, to be their own voices, instead of having healthy people speak for us. I wouldn’t go so far as to accuse the Grey Lady of ablism—I’m not so sure that’s what’s at work here—but it would be nice if one of the 7 million people with psoriasis would have been tapped to write something. (N.Y. Times, in case you’re wondering, I am always available to write a piece. Just saying.)

Regardless, it’s nice to have some pub—especially good pub like this—in a newspaper as widely read as the N.Y. Times. It can only help when good information is put out there; maybe next time readers will see someone with psoriasis and not edge away. I’d call that a victory.