staring out into the future

One of the things I love about my favourite health bloggers—like Kerri—is how much they always have going on. One day, I would love to be able to make health activism my job, but I’m not there yet (and I’m not so sure I want to leave journalism. But that’s another story.) I’m a huge fan, too, of how much she does for her community, and I think she’s a great model of what health activism can look like.

I think the future of health activism is just more: more patient advocates sharing their own experiences. I think we’d all do the most good if we banded together instead of just focusing on our own diseases. My psoriatic arthritis isn’t so different from Wren‘s or Jillbean‘s rheumatoid arthritis. We’re helped by many of the same drugs and have many of the same demands.We’re hit with many of the same problems. Plus, added all together, those with different autoimmune diseases number many millions strong; imagine if we spoke with one voice. We’d be unstoppable!

So, I hope the future of health activism is more inclusive, more welcoming to different groups—and to people with symptoms but no diagnoses; I hope we one day realise a rising tide lifts us all to higher ground.

 

(Edited to add: See this? This is exactly why Kerri’s so awesome.)

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

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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

the case of the missing monocyte

This came across my inbox at work, and I thought it might interest some of you, as it did me:

The case of the missing monocyte

 

CHAPEL HILL, N.C. – An estimated 1.3 million people in the United States suffer from rheumatoid arthritis. The causes behind this chronic disease — which can exhibit itself as pain, swelling, stiffness, deformation, and loss of function in the joints — have eluded scientists for centuries. A new study by UNC researchers offers tantalizing glimmers about the roles of a gene called CCR2, an immune system cell called Th17 cell, and a missing monocyte. The study contributes to a better understanding of the disease mechanism and has implications to guide the clinical trial strategy, said lead researcher Peng Liu, MD, PhD, research assistant professor at the UNC Thurston Arthritis Research Center. Her team’s findings were reported online in PLoS One on Oct. 4. The mystery began several years ago when arthritis researchers zeroed in on a gene called CCR2. CCR2 is highly expressed in the joints of patients with rheumatoid arthritis, which led researchers to believe it might contribute to the disease. “Scientists thought that if you inhibited CCR2 you would have a beneficial effect,” said Liu. “But actually, the result was the opposite.” Studies revealed that suppressing CCR2 in fact cannot ameliorate joint inflammation, in some cases, it leads to disease exacerbation.Intrigued, Liu and her team used mice to investigate how CCR2 affects immune system cells. The immune system is critical because rheumatoid arthritis is an autoimmune disease, in which the immune system attacks the body’s own tissues, causing inflammation. They found the smoking gun when they looked at a type of immune cell known as Th17 cell. Arthritic mice without the CCR2 gene produced three times the amount of Th17 cells, increasing the inflammation in their joints. “We found that an enhanced Th17 cell response is responsible, at least in part, for the increased disease severity,” said Liu. Inhibiting the activities of Th17 cell, therefore, may be a promising new direction for drug treatments for rheumatoid arthritis. The team also found that a particular type of monocyte (a type of white blood cell) disappeared from certain tissues in the mice without CCR2. They hypothesize that the CCR2-expressing monocyte plays an important regulatory role, so without the monocyte, Th17 cells proliferate. “The potential link between CCR2 and the Th17 cells is the monocyte subset,” said Liu.“This subset of monocytes may have a suppressive function in autoimmune disease,” said Liu. The finding opens the door to new treatment possibilities, such as injecting this monocyte subset into patients with rheumatoid arthritis: “Finding this monocyte may be important for later development of cell-based therapy,” said Liu. Other collaborators from the UNC Thurston Arthritis Research Center include Teresa Tarrant, MD, Alan Fong, PhD, Rishi Rampersad, Christopher Vallanat, Tatiana Quintero-Matthews and Michael Weeks. Additional collaborators include Denise Esserman, PhD, from the UNC Department of Medicine and UNC Department of Biostatistics, Jennifer Clark of the UNC Department of Biostatistics and Franco Di Padova, MD and Dhavalkumar Patel, MD, PhD of the Novartis Institutes for Biomedical Research, Switzerland. For a report of the research, see: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0025833. Support for the research comes from the North Carolina Translational and Clinical Science (NC TraCS) Institute, home of the UNC-Chapel Hill Clinical and Translational Science Award (CTSA); the Arthritis Foundation; and the National Heart Lung and Blood Institute.

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.

#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 three: stupid questions

Though it’s been said, “There are no such things as stupid questions”—hell, I’ve even said it myself—some of the queries I’ve been subjected to as a result of my psoriasis or psoriatic arthritis make me want to change my mind about that nugget of popular wisdom.

The granddaddy of them all, however, is probably the most harmful question those of us with (mostly) invisible illnesses face: You look so healthy/normal; how can you be sick?

Of course, psoriasis isn’t necessarily invisible; the itchy, flakey, red, angry patches are easy to see if they’re on a part of the body that’s easily seen, like your face or hands. Luckily for me, my psoriasis is mostly confined to my scalp (at the moment), though it hasn’t always been that way.

And for some people, arthritis isn’t invisible, like the destructive form of psoriatic arthritis mutilans. But for me, in both cases, it mostly is. So, why is it so hard to believe that people could be struggling so hard just to look normal when they do, in fact, look completely healthy?

Well, at least in my case, I try really, really, really hard to make myself seem normal. I do my hair. I put on makeup. I wear nice clothes and shoes. I drink caffeine to give me energy. I take lots of pills to keep the pain and stiffness at bay. I sleep an insane number of hours on the weekend and try to take it easy after work. There’s actually quite a bit of effort into looking and acting effortless.

People often also have an expectation that the sicker you are, the worse you should look. There have been days when I have felt exceptionally horrible and no one was the wiser. That’s kind of the point: It’s an invisible illness. It’s not out there for the whole world to see in the same way being in a wheelchair is.

So here’s the rub: Just because we don’t look sick doesn’t mean we’re not. Just because we look like we’ve got everything under control doesn’t mean we do. And just because we’re good one day doesn’t mean we will be the next. That, my friends, is the fun of an autoimmune disease.

#HAWMC day two: abstemious

Abstemious: adj. \ab-STEE-mee-uhs\
1. Sparing in eating and drinking; temperate; abstinent.
2. Sparingly used or consumed; used with temperance or moderation.
3. Marked by or spent in abstinence.

Having psoriatic arthritis is a study in refraining. Though I often try to concentrate on everything I can do rather than what I can’t, to be upbeat and make the people around me feel good about my having a chronic, incurable illness, part of being a health advocate means sometimes I have to make it crystal clear what having two lifelong conditions is like.

And, sometimes, it’s marked with things I can’t do, with things from which I must abstain.

Take alcohol, for instance. I am on methotrexate, that wonderfully toxic drug that somehow lets me function more like a normal human being. But it brings with it the potential for liver damage. Since I like my liver and I’d like it to continue working, I have to cut out other things that have the potential to harm it. This is where me abstaining from alcohol comes in. This is harder than I thought it would be. Even though my parents, say, and my in-laws know I can’t drink—and know why—they all still insist on offering me glasses of wine or cosmopolitans. And, yes, I’ll admit that now and then I indulge. But for the most part, it’s not worth it.

Then there are days when I want to abstain from everything. Days my meds aren’t working the way they should and days when I’d love to hit pause on my life and just sleep until I felt better. But in all honesty, I take methotrexate and many other pills so that I don’t have to abstain from doing most of the things I love. And that makes giving up the few things I do have to let go that much easier, in the long run.

chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren’t related to. Too much eating can lead to weight gain or eating food triggers or stuff you wouldn’t normally touch. All of it can mean pushing yourself passed your limits. It can be a disaster.

There are some things that I’ve learned through 13 years of having a chronic illness. A lot of the same things that apply during the rest of the years help during the holidays. Limit your stress as much as possible. I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. But keeping everything in perspective is essential. Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. The way I (try to) prevent overeating is I only allow myself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on Last.fm and sipping on hot apple cider or (soy) egg nog.

can i have phil mickelson’s psoriatic arthritis?

via AP

Golfer Phil Mickelson’s recent announcement that he has psoriatic arthritis has been blowing up my Google Alerts since his press conference. And though I have read many of the articles about it, I’ve found most of them to be incredibly disappointing. Many of the reporters evidently decided to take what Mickelson said about PsA at face value, instead of doing the five seconds of research that would suggest that starting Enbrel does not mean everything will be coming up roses.

Here’s some of what Mickelson said at the press conference as well as an NBC reporter’s take (via NBC Sports):

Weekly shots have brought the disease under control, and Mickelson said there shouldn’t be any negative impact on his long- or even short-term health.

“I’m surprised at how quickly it’s gone away, and how quickly it’s been able to be managed and controlled,” he said. “I feel 100 percent, like I say. But when I (was) laying there on the couch and I (couldn’t) move, yeah, I had some concerns. But I feel a lot better now.”

Weekly shots of Enbrel lower his immune system, and Mickelson said the difference was noticeable almost immediately.

“I feel great now and things have been much, much better,” he said. “I’ll probably take this drug for about a year, and feel 100 percent. I’ll stop it and see if it goes into remission and it may never come back. It may be gone forever.”

“It’s not that it’s cured, but it may never come back,” he added. “Or if it does come back, I’ll start the treatment again and should be able to live a normal life without having any adverse effects. So I’m not very concerned about it.”

Wait, what?

I’m pretty sure that’s not how it works. Since Mickelson went to the Mayo Clinic, I’m hoping his doctors told him biologics, like Enbrel or Humira or Orencia or Remicade — all of which I have been on and all of which stopped working for me after a promising beginning — don’t necessarily always keep on working. For some of us, they may never work or they just might stop helping after awhile.

Regardless, psoriatic arthritis — a chronic, potentially debilitating condition — is something to be concerned about regardless of whether the current treatment is working. This New York Times article does better job of explaining what Mickelson faces. And I get why Mickelson is (hopefully) just downplaying the seriousness of what he has. When I was first diagnosed, I didn’t really want to face it either. I did the same thing, though my doctor’s optimism led me to believe it wouldn’t be so bad.

Still, it’s really disappointing that the many reporters didn’t take the time to take a step back and phone a dermatologist or a rheumatologist or even hop onto the National Psoriasis Foundation’s website to find out more than what Mickelson was saying. Now, I’m sure there are many people out there thinking PsA isn’t a big deal, that it’s just a matter of popping onto a drug for about a year and everything will be hunky-dory. Never mind that Enbrel, and other biologics, are powerful meds with potentially dangerous side effects. Never mind that psoriatic arthritis is different than the arthritis Grandma has in her knee, that it’s a chronic condition.

I think it’s a shame that what could have been a really great opportunity to raise awareness about immuno-arthritis and other chronic illnesses has turned into a joke, with sports writers devoting more space to Mickelson’s turn to vegetarianism than to his disease.

I hope that Mickelson’s predictions come true for him. I hope it does only take a year on Enbrel and his symptoms never come back. But even if they don’t, his PsA isn’t gone just because his joints don’t hurt. I hope Mickelson’s symptoms go away for good, but I won’t hold my breath.

everything will never be ok

My recent birthday was an anniversary of sorts. My 21st birthday five years ago was the last one without chronic disease. I guess that’s kind of a morbid anniversary, but it’s there nonetheless. Five years seems like a long time to be sick, and it is. Five years is the difference in being and undergrad and working in the “real world.” It’s the difference in being happily single and happily married. It’s the difference in knowing I wanted to be a journalist and realising that it’s not all it’s cracked up to be.

But, looked at another way, it’s not very long at all. It’s taken me almost all of these past five years to come to terms with the fact that chronic illness means forever. That, unless something changes over the course of my lifetime, I will have psoriatic arthritis and psoriasis for the rest of my life. If the average lifespan is 77 years and I’m 26, I have (God willing) at least 51 years left if I hit the average. In that span, five years doesn’t seem like all that many.

In the last five years, I’ve accomplished quite a bit and experienced many changes — getting married, moving eight (!!) times, getting two degrees, adopting a dog and then a cat, coming out of remission, the ups and downs of trying new drugs — and I expect the next five years will hold so many things I can’t see now. I guess the point is this: Life doesn’t stop — for me, for my loved ones, for the rest of the world — because I got some bad news. It may have taken me most of the past five years to accept that things will be different for me from now on, but I don’t think that means giving up. I will live life with as much gusto as I can manage — or fake — for as long as I can. I’ll keep trying and re-trying different medications until I find the combination that works best for me. I’ll take care of my physical body — with exercise and good food — as well as my spiritual life. I will keep experiencing
the things that make life so full and good: the laughter of children, curling up with a good book, seeing the beauty in things great and small, the sound of my husband’s voice, the joy with which my little pup Otis takes in everything and so much more.

I am lucky and blessed in so many ways. It would be a shame for me to dwell so much on the negative — on what I don’t have — instead of loving what I do. Lindsay posted this great quote that sums up so much of what I’m feeling that it seems right to end with it:

The psychological war with illness is fought on two fronts: on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. … Self-pity is a poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.
– Richard Cohen