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.

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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!

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?

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.

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’

Running with Scissors (memoir)

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.

i’m just a little unwell

I’m in the midst of one of those flares where it seems I can feel the joint destruction. The pain is just a little more intense, a little more malicious. It’s hard to describe, but it’s as if my psoriatic arthritis has decided to kick things up a notch.

Maybe it’s silly to see my arthritis as some kind of creature–and one that’s often malevolent, at that–but during this type of flare, that’s exactly how it seems to me. Joints that normally don’t hurt, not really, are grinding and sending out horrible, grabby tendrils of pain shooting up my limbs, tightening already knotty shoulders.

If it stays like this much longer, I’ll have to get in touch with my NP. I hope it will pass, though, with a little relaxation. Fortunately, that’s exactly what I have in mind for this long weekend: lots of reading and resting, with some NordicTrack and vegan cooking thrown in for good measure. I’m feeling better just thinking about it.

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.

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.

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.