brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

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

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

all i ever wanted

'N Sync~N Sync

Image by bamalibrarylady via Flickr

(Sorry for the *N SYNC title. I just got back from a show, and one of the groups sang a cover of an *N SYNC song. It’s been stuck in my head ever since.)

So, five things that changed my life as a patient? All right. I’m game.

  1. Getting sick in the first place. So, that might seem like cheating but my first psoriatic arthritis flare was rough. I went to an emergency walk-in clinic after suffering through for a few weeks and the good doctor, in his wisdom, gave me a mild anti-inflammatory. It took something like eight months for me to get an appointment with a rheumatologist, and those eight months were horrible. I remember going through Aleve like it was candy. I was a student at the time, and I worked at a retail chain on my feet. It was torture. But, I eventually saw Dr. Awesome, and she introduced me to No. 2.
  2. Biologics. God bless whoever invented biologics. Without first Humira and now Enbrel, I would not be able to function—or at least not very well. Humira stopped that first flare in its tracks, which was huge for a twentysomething scared she would be trapped in her grandmother’s body for the rest of her life.
  3. iPhone. My iPhone is seriously a godsend. I can use it to stay connected to people, sure, but perhaps just as important, I can take pictures of myself in easy outfits for days when my brain can’t handle getting dressed in work-appropriate clothing. Seriously people, taking pictures of myself—a la style blogger—is a huge help when I’m stuck in a brain fog or my tendonitis decides to act up again. I can just pull up my album of tendonitis appropriate clothes—buttons are an especial no-no—pick an outfit and voila! Work appropriate.
  4. Flats. Ah, the days when I would wear heels all day, every day are long gone. Sure, I have a few heels that have passed the delightful test that is my double-digit hour workdays, but they are usually a) expensive and, therefore, b) few and far between. In between heel days, I subsist on flats—but they have to be cute, that’s a given. (And come spring, No. 4 will be supplanted completely by TOMS ballet flats. So. Excited.)
  5. The mister. Last but certainly not least. My hat’s off to all of you single ladies who do it on your own; I don’t think I’d be able to survive without the mister to help me out. Most Some days, I have nothing left after work: no energy for cooking, cleaning or doing anything except putting on my jams and watching Scrubs. But regardless of all that, the mister is always there for me, always able to buoy my spirits when I’m having a Bad Disease Day.

What would make your top five?

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

move to improve

Today is World Arthritis Day, and this year’s theme is one I definitely need to take to heart: move to improve. I know that’s advice I need to take to heart. I work at a computer most of the day, but I’ve been trying to incorporate getting up and moving—even if it’s just for a quick walk around the office—into my days.

Still, I can do much better. I need to get back in the habit of working out again and not let my insane schedule talk me out of being healthy. But here’s what my good friend and yours HHS Secretary Katherine Sebelius had to say about World Arthritis Day:

Today is World Arthritis Day, a perfect time to get the word out to friends and loved ones about some of the simple steps that you can take to prevent and manage arthritis. Almost all of us know someone dealing with arthritis. Today, one in five adults suffers from the condition. Each year, it leads to more than 40 million outpatient visits and roughly one million hospitalizations.

Beyond the painful human costs, the disease also carries a high economic price tag: $128 billion annually in medical expenses, lost earnings and reduced productivity. The good news is that arthritis is not inevitable or untreatable. For osteoarthritis, the most common type of arthritis, prevention is possible. Relief is available for many forms of the disease. And more promising treatments are on the horizon.

The theme of this year’s World Arthritis Day is “Move to Improve”. That is because one of the best things you can do to manage arthritis is to simply get moving. Physical activity is good for your body. It decreases pain, improves function, and delays disability. Even a small amount of extra activity around the home can make a big difference for your health.

That’s why we in the Obama Administration are supporting community efforts across the country to promote active lifestyles. And it’s why as part of the Affordable Care Act we made a historic investment in preventive care for seniors.

To learn more about new benefits for people dealing with arthritis, visit Healthcare.gov. And for tips on what you can do to prevent arthritis and how you can get involved in finding ways to conquer the disease, visit http://www.cdc.gov/arthritis.

Together, we can reduce the pain and suffering that arthritis causes for millions of Americans every day.

This couldn’t come at a better time. A recent National Psoriasis Foundation surveyfound one in four people with psoriasis may have undiagnosed psoriatic arthritis. That is insane. If you have psoriasis—heck, even if you don’t—

and you have the following symptoms, please get checked out by your doctor:

• Pain, swelling or stiffness in one or more joints;

• Joints that are red or hot to the touch;

• Frequent joint tenderness or stiffness;

• Sausage-like swelling in one or more fingers or toes;

• Pain in and around the feet and ankles;

• Changes to the nails, such as pitting or separation from the nail bed;

• Pain in the lower back, above the tailbone.

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.

loving what you do

What a difference a year makes.

It amazes me to think that this time last year I was actively looking to leave journalism. I was desperately unhappy with my work situation and having to work insanely long production days  simply because of a lack of planning on my boss’ part. I’m convinced this was, in large part, responsible for the insane flare that eventually saw me back on Enbrel, methotrexate and Plaquenil, a therapy I’m still on to this day.

Now, I’m the boss. I am working more hours than I was at this time last year, but I love every one of them. I have discovered a knack for writing columns—thanks, I’m sure, to this blog, which has helped me develop a more conversational tone than is appropriate in the average news story. Even on the verge of crazy weeks, such as this—a back-to-school section, two weekly papers, a monthly paper, the start of football season and weekend events galore—I’m excited to be up to my elbows in what I do.

And though my psoriatic arthritis is not completely controlled and is not where I’d like it to be—and that pesky tendonitis in my left wrist still bugs me from time to time—I’m living well in spite of it. That’s not my goal; I’d love to be back in the remission I enjoyed after my first, long flare. But even if that’s not in the cards for me right now, I’m surviving, even thriving, where I am. And that’s enough.

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.

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.