double edged sword

Methotrexate Teva 100mg_ml 1x50ml

Methotrexate Teva 100mg_ml 1x50ml (Photo credit: Haukeland universitetssjukehus)

Taking a forced vacation from methotrexate due to a drug shortage led me to some interesting discoveries. The first few weeks off the drug, I felt great. Amazing, even. I was less tired; I had more energy; I got fewer headaches. But that didn’t last.

Enter phase two: what I like to call the “remembering why I was on MTX in the first place” phase. I hurt more, so I was exhausted all the time and short-tempered. My psoriasis came back on my scalp. My PsA was definitely much less well controlled—which is funny, because I didn’t think it was doing all that well even on the MTX.

But my awesome NP found a pharmacy that had a supply of the stuff coming in, so she sent in a scrip for me. It has the preservative, which is different but not bad. I took it for the first time in a long time last night, and I feel downright horrible today: nauseated, delightful headache, hot flashes—the whole nine yards. I don’t know if it’s a reaction to the preservative or just to getting back on my favourite highly toxic drug, but there it is. (And it’s not from mixing alcohol and MTX; I was DD for yesterday’s Super Bowl festivities, so I didn’t touch even a drop.)

When I first found out about the drug shortage, it seemed a little like Providence: Maybe this was a sign that I could get off one of the three main drugs I’m taking (which are MTX, Plaquenil and Enbrel) and still be OK. Maybe I can reduce my drug load a bit and still feel the same as I do on them. That turned out not to be the case. And while that definitely bums me out some, I’m glad that I can feel something close to normal even if it takes two injections and 42 pills per week to get there.

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

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.

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.

climb the hill for a cure conference

Tweeting bird, derived from the initial 't' of...

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I’ve talked before about volunteering with the National Psoriasis Foundation, especially the One to One peer mentoring program. As a result of my work with the organization, I was invited to the Climb the Hill for a Cure conference in Washington, D.C. It starts Sunday, and I couldn’t be more excited. I get to be involved in workshops on getting my point across (blogging, social and traditional media), the One to One program and psoriasis research.

But even better than that, I get to use my knowledge as a small-town newspaper editor and a blogger with many tens of readers to talk about—you guessed it—getting your point across. And while I’ll definitely be blogging and Tweeting the conference, I want to pick your brains: what do you see as the purpose of your blog in particular and patient blogs in general? Are you an activist offline as well as online? How do you use your blog and social media to raise awareness about your disease and or chronic illness?

#HAWMC day 28: not anymore

(I won’t lie—I really wanted to name this post “At Least I’m Not As Sad (As I Used To Be)” but I already did that. Damnit.)

(Also, incidentally, last poem of the Heath Activist Writer’s Month Challenge!)

Not anymore

I used to be carefree. But I’m
not anymore. I
used to be weak. But I’m not
anymore. I used to be aloof.
But I’m not anymore. I used
to be afraid of losing. But
I’m not anymore. I used to be
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(Now, I’ll leave you with fun.’s “At Least I’m Not As Sad (As I Used To Be)”. Because that song is awesome.)

#HAWMC day 6: why i write

I have loved words for as long as I can remember.

As a kid, I was always writing or reading, burying myself in the impact words can have on the imagination. As I grew older, I relished losing myself in books, pretending to be so very far away whenever my life seemed less than ideal. Now, I still love reading, and I make my living with words: writing them, editing them, using them to inform.

It took me a long time, though—perhaps longer than it should have—to turn my love of writing into a health-centred blog. It was scary to put myself out there, to admit to the whole wide Web that I have a chronic illness, that I am not normal, whatever that is.

My first health-related post was during Invisible Illness Week in 2009. At that time, my blog was more about my life in general than patient advocacy, and I didn’t anticipate writing much more about my challenges with psoriasis and psoriatic arthritis. I remember the horrible pit in my stomach—the way my tummy feels during that first big descent on a roller coaster after the long, slow climb—as I hit the publish button.

Slowly, I started adding more content about PsA, until it completely took over my blog. Why did that happen? A couple of reasons: At that point, not a whole lot of people in my life knew about my health difficulties, and few of them really understood exactly what I was going through. Posting online was a way for me to connect with people like me. It also served as an outlet, as a way to release the sometimes ugly emotions that are one of the worst side effects of autoimmune disease—worse even than moon face (aka fat face).

Now, my motives still incorporate the desire for empathy and the need for a release, but there’s something more. I wanted to educate people as to what it’s like to be trapped in an 80-year-old’s body, what it’s like to have a chronic illness. I love being able to help people, to connect with people and to reach more people than I otherwise would be able to. I love being a patient blogger, a health advocate, a voice standing up and saying, “Yes, I have arthritis. No, I’m not 80 years old. And no, it doesn’t ruin or run my life.”

#HAWMC day one: acrostic

Though I am a few days late, I’m jumping on the WEGO Health Health Activist Writer’s Month Challenge. To rub? Write a post a day on a topic decided by the lovely people over at WEGO Health.

The first post? Write an acrostic poem using your disease. For once, I’m kind of jealous of Kerri for her diabetes. (Because it’s short, people! Geez.)

Without further ado, Psoriatic Arthritis: The Poem.

People often think psoriasis is contagious,

Something that can be caught from shaking hands.

Oh, how I wish they’d wake up and realize this:

Read my lips: The stupidity is more than I can stand!

I didn’t get the P because I don’t shower,

And PsA isn’t something that afflicts the old,

Tis true, they are both the result of the same power: an

Immune system that’s totally out of control.

Caring people can still make my burden lighter,

Although most days I need lots of pills, too;

Rarely predictable, this has turned me into a fighter,

To seem normal, a lot of acting I must do.

Help—though I may need it—is hard to ask for,

Running fast, just to stay in place.

It may seem strange to work so hard to go nowhere,

To use all my spoons to stay afloat,

It all seems worth it when I can be there

Stuck between the healthy and those in my same boat.

(IU)D-Day

I finally did it. I  bit the bullet and got an IUD put in Thursday. Though I know there are several choices out there, I went with Paragard. (Apparently people on immunosuppressants shouldn’t use Mirena; who knew?) Except for the financial part (my insurance doesn’t cover contraception, apparently, because we’re in the Stone Age), it was an easy decision: I don’t do well on hormonal birth control, I’m on MTX and need highly effective contraception (hello drug used in abortions and can cause massive harm to a fetus!) and I don’t need to think about my IUD until a) we decide to have kids or b) it’s 2021 and it needs to be removed. That’s right. It’s good for 10 years.

Getting an IUD just made sense for us, though clearly it may not be the right choice for everyone. With all the problems I had with hormonal birth control (hello no sex drive and lots of random mood swings!) and our desire to not have children for at least two years, it just made sense. Plus, it means I get to get off one drug. How awesome is that?

Getting the IUD inserted and the few days after were definitely an … experience. There’s a ton of stuff I wish I had known; it wouldn’t have changed my mind but I certainly would have been more prepared. And I like being prepared.

For example, I am used to needles. I give myself an injection of MTX and ENBREL every week. But the needle used for the pre-IUD insertion block? Sitcom large. That pictures is only a slight exaggeration.

Would I have backed out had I known a two-foot-long needle was going to be inserted into my bajingo? Nope, of course not. It would have been nice to have prepared myself for that eventuality, though.

Second: I was told to expect minor cramping after the procedure.

Minor cramping my ASS.

For the rest of the afternoon, I spent my time on the coach holding a hot water bottle to my abdomen and grimacing, curled up on the couch watching copious amounts of “Law and Order: Special Victims Unit” while mainlining lemonade and Cadbury Mini Eggs.

The Professor was kind enough to keep me fully stocked in anything I needed, even though he had plenty of work to do getting ready for his next lecture. I have never had such painful cramps in my entire life. Seriously, for the rest of the weekend, I stopped taking my prescription NSAID so I could ingest as much Midol as was medically advisable. (Random aside, why are there so many formulations of Midol? I seriously spent 10 minutes at the drug store staring at the shelf just lined with different versions of the same thing before closing my eyes and picking one, just so I could leave the store.)

Only two things really helped: Streak fries and, umm, well, I’ll let the cast of Scrubs say it for me:

That first five or six hours, I was in the bathroom so long I read an entire issue of National Geographic from cover to cover. I still am not really sure what that was about, but I’m glad that part is over.

The rest of the skinny on the IUD: I apparently can look forward to heavier periods and cramps from now on. The worst of it is supposed to be the first year, so I guess I’ll find out.

But even if all of that is true and even with the fallout from the first couple of days after the insertion, I’m still glad I made the decision I did; fewer pills and the increased likelihood that we won’t get pregnant (though we still will continue to use two methods of contraception, as is indicated for women of childbearing age on MTX) is no small matter. If this can help me get one step closer to normal, I’m glad I did it. Though, if I had been a normal, healthy twentysomething, I’m not so sure I would have even considered this. I guess that’s something I’ll never really know, though. So, with the life I live now—in reality—I’m extremely glad I did it. And even with all the quirks, I’d do it again.