dear 18-year-old me

Dear Me, circa 2002:

You just graduated high school. Nicely done (not that there was any doubt). You’re moving away from home, and you’ll be surprised just how much that helps in the long run.

Enjoy your time at U of T. Go to class more. Try to sleep more. Eat better. Stay vegetarian—you’ll just be jumping back on that train in a couple of years anyway. Cherish the friends you make there because they are some serious kick butt people. Enjoy Toronto more—you’ll be wishing you still lived in a city 10 years from now. Go out drinking and dancing more because you won’t be able to do that for as long as you think. Go sing karaoke: Seriously. Just do it.

Go out and be young while you can: Things are going to get serious faster than you expect. You’re going to get hit out of nowhere with a chronic illness. You’re going to get married young. You’re going to be a journalist, which means you’re not going to have money. You’ll be lucky enough to find work in the midst of a terrible economic downturn. Your husband will go on to get two master’s degrees. You’ll become a Sunday school teacher (weird, right?). You’ll move to the South. You’ll run a newspaper. And all of this? It’ll happen before you hit 30, which seems really far at 18.

Most importantly: Relax. Things will work out for you, even if it’s not exactly the way you expected. Despite everything, life is pretty awesome.

Cheers,

Me, circa 2011

 

P.S.- Stay away from “The Matrix.” The second two movies aren’t worth the $30 you spent to see them.

 

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

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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.

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.

start fresh

Where has September gone? I feel like just yesterday it was the end of July.

Anyway, this lovely meme has been making the rounds for Invisible Illness Week. I’ve done it since 2009, but it’s always fun to see what’s changed.

1. The illness I live with is: psoriasis and psoriatic arthritis.
2. I was diagnosed with it in the year:  psoriasis in the late 1990s and PsA in 2005.
3. But I had symptoms since: Psoriasis was a quick diagnosed, but I was diagnosed with PsA in 2006, then changed and now I’m back to PsA again.
4. The biggest adjustment I’ve had to make is: changing my footwear options. Seriously, people: How hard is it to make cute, comfortable heels?
5. Most people assume: that only old people get arthritis. Ugh.
6. The hardest part about mornings are: stopping myself from hitting the snooze button. Again.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: my iPhone. Seriously, how did I get along without that thing?
9. The hardest part about nights are: when I’ve overdone it and everything hurts.
10. Each day I take 10 pills and two weekly injections. 
11. Regarding alternative treatments I: believe they are a part of my treatment regimen but not the whole solution. I don’t function well without the aforementioned pills and injections.
12. If I had to choose between an invisible illness or visible I would choose:  definitely invisible. I’ve kind of got both; psoriasis, when it’s flaring, is extremely visible. It’s better to be incognito, I think.
13. Regarding working and career:  I love my job. Love, love, love it. Who I am is largely defined by what I do. I would put up with quite a bit in order to be able to work.
14. People would be surprised to know: that I’m in my 20s, apparently. My writing voice must sound older because, in real life, people constantly ask my if I’m a student at nearby major university. It’s the freckles, I think.
15. The hardest thing to accept about my new reality has been: that I had a new reality. It’s kind of a bummer.
16. Something I never thought I could do with my illness that I did was: run a newspaper. Successfully. (Though I guess it’s a little early to start celebrating on that front. Stupid bad economy.)
17. The commercials about my illness: I don’t have cable, so I don’t see them.
18. Something I really miss doing since I was diagnosed is: not needing nine hours of sleep to feel fully functional.
19. It was really hard to have to give up: I’m trying not to see things in a pessimistic way. So, instead of giving up heels, say, I’m trying to see it as a chance to expand my rockin’ flats collection.
20. A new hobby I have taken up since my diagnosis is: sewing.
21. If I could have one day of feeling normal again I would: drink some peach sangria and stay up all night reading.
22. My illness has taught me: that even bad things can have upsides.
23. Want to know a secret? One thing people say that gets under my skin is: “You have arthritis? So, what? I totally have that in my finger/toe/other insignificant joint.” Jerks. I have it in just about every joint and mine happens to be an autoimmune disease, so not quite the same.
24. But I love it when people: just accept me the way I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Pretty much all of Job.
26. When someone is diagnosed I’d like to tell them: that they are not alone and that, thought it may seem like it right then, life isn’t over. It’ll just be different.
27. Something that has surprised me about living with an illness is: just how many others are dealing with some kind of chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: get me supplies for the greatest bubble bath of all time.
29. I’m involved with Invisible Illness Week because: our diseases are only as invisible as we are.
30. The fact that you read this list makes me feel: well loved.

still speaking: remembering 9/11

I have already said or written many words on what Sept. 11 means to me; over the years, I’ve written columns, made speeches and just plain talked it over with friends, family and even strangers. Still, I didn’t want to let today pass without making mention of it somehow.

Normally, I check my email before I head out in the morning, but today I got a late start and had to be at church early to help parents register their kids for Sunday school. So, I didn’t get this until after I got home, but it seems appropriate.

Under One Sky

Isaiah 43: 18-19

“Did you not know?  Have you not heard?  I am doing a new thing. I am making a way when there was no way.  I am making a road through the desert, rivers in the badlands.”

Reflection by Donna Schaper

On this tenth anniversary of the invasion of American sky by attacking and suicidal airplanes, my congregation is putting up prayer flags. There will be hundreds of them across our grand interior sanctuary, each hand-calligraphed by artist Carla Shapiro on pillowcases.  In the year after the attack, she wrote out 2,500 obituaries of those who died in the World Trade Towers on prayer flags. She then hung the flags over the Esopus Creek in upstate New York, where the printing weathered into what can only be called an ancient script.  Now the words are blurred, like the words on an old tombstone. The language looks Arabic or Aramaic in script, but words can no longer be read.  Shapiro was trying to tell us something. She was visiting the 9 – 11 grave. She was mourning.  She was remembering. Ten years later what she remembered is that memories fade. Images blur. Time moves on.

After last year’s downtown anti-mosque campaign, courtesy of the hate people and their signs, “Jesus hates Muslims” and “No Mosque on Sacred Space,” the fading and the blurring is welcome. We will learn again that no one religion can own Jerusalem or ground zero or Jesus or God. We will know sacred space in a blurred obituary, a prayer flag, a neighborhood, anywhere and everywhere but in an expensive fight for it. Sacred space will be known by the wars it does not create instead of for being their instigator.

Across the street from Judson Memorial Church, on the South End of Washington Square Park, a seven-story Spiritual Life Center is opening at New York University.  Jews, Muslims, Christians, Sikhs and more will cohabit a space.  Students will learn a new way of campus ministry. We joke about whether such ecumenicity is too close or too far from ground zero. Framed between this new building and our own rises a new smaller tower at the World Trade Center.  From the arch at Washington Square Park North, you see all three buildings, as though they were always there, as though we hadn’t lived through a decade of emptiness in the sky or immature religion on the ground, and Americans, Afghanis and Iraqis uselessly dead in wars no one really understands.  The artists and architects have given us what we couldn’t find ourselves.  They have shown us a new sky and a new scape.  From these we will also draw a new spirit, a mature religion, and a revenge-free way of living under one sky.

Prayer

God of earth and air and sky and water, God whom no one faith can capture, draw near and let this next decade be one of remembering how much we love each other.  Help us beyond high-priced, useless revenge into free and abundant relationship.  Amen.

new biologic side effects warning

Fda

Image via Wikipedia

I got this new warning about anti-TNF drugs in my inbox not too long ago and thought I’d pass it along:

“The U.S. Food and Drug Administration, or FDA, is warning that people who take tumor necrosis factor-alpha blockers, also known as anti-TNFs or TNF-blockers, may be at risk of infection from the bacteria Legionella and Listeria.”

For the rest, click here.

For the record, I take a biologic: Enbrel, currently. I’ve been on several others (Humira, Orencia, Remicade). Will this stop me from taking it or any other sin the future? No, probably not. But I’ll certainly be careful—as I already am, as much as I can be—in exposing myself to sick people.

short: long weekend

I have worked my share of holidays.

I worked in retail for more than a decade, and journalism is not known as a profession that allows employees a lot of three-day weekends.

So, do you want to know the best part of working at a weekly instead of a daily? Not being the only person in the office on a holiday.

Happy Labour Day weekend, everybody!

hey, i felt pretty when they turned out the light

Being a woman can be pretty awesome; we can wear dresses and skirts (or not), have children (or not) and do just about anything we want. But being a woman can also mean internalising a lot of potential harmful stereotypes about what’s beautiful—and what isn’t. I’m sure we’ve all been made to feel less than beautiful (hello, high school), even if it’s just by the ubiquity of one unrealistic type of body being paraded through the media as the ideal.

But there’s a whole different set of self-esteem and body issues that come up when you’re chronically ill. Some of my favourites (that was sarcasm, in case you couldn’t tell): steroid weight gain and associated fat moon face and breakouts; nail pitting and bed separation from psoriasis; psoriasis in general, because who doesn’t love flakey, itchy and sometimes bloody skin; the fried, damaged hair that is the hallmark of repeated use of a coal tar shampoo (it also smells just lovely); swollen hands and feet (and just about anything else) from arthritis; and brain fog, which isn’t necessarily physical, but it’s certainly let to some bat-shit insane wacky off-beat choices in make-up, hair and clothes. (What did I miss?)

Why should we feel ashamed of any of that? Why should I wear nail polish to hide my freaky nails, wear light clothes and long sleeves to hide my psoriasis or elastic waist-band pants (ugh) on days my hands are flaring? I guess that’s really a question only each of us can answer for ourselves. I think there’s a fine line between accepting ourselves as we are and giving up, and between looking good to feel better and just plain covering up the truth.

As for me, I’m sure I’ll continue to care about my appearance, to wear flattering clothes and paint my nails fun colours and eschew elastic-waist pants. But I do it to express who I am, instead of hiding it. Yes, I have psoriasis and, yes, I have psoriatic arthritis, but I’m also young and interested in style, and looking good helps my self-esteem. So, take that media and take that, chronic illness; I am beautiful despite all of that.

 

(Also, since the last time I used a song lyric as a title, I got tons of people finding my site by Googling that lyric—and, in fact, still do—the song from my title is “Bullet” by Steel Train. You’re welcome.)

i remember you

When I first was put on Plaquenil (or, rather, the generic hydroxychloroquine), it absolutely destroyed my appetite. I remember not really eating for the first couple of weeks I was on it, before my desire for sustenance returned, albeit much smaller than it previously was.

After I stopped taking it last summer, my appetite returned (as did all the weight I’d lost while on it, boo). So, when I was put back on the drug at the end of last year, I was expecting much the same thing: a severe reduction in my appetite. It didn’t happen; in fact, it seemed as though I was hungrier than ever (which is a side effect I associate more with the dreaded ‘roids than with this anti-malarial).

At least, this was the case until a couple of weeks ago. I just stopped being hungry. At all. There were a couple of days where all I had was a cup of coffee (thanks, Dunkin Donuts K-Cups) with a big of coconut milk creamer, a few bites of an apple and maybe a latte or a cup of tea. Now, tough, I’m up to a cup of coffee, some kind of small lunch and a light dinner. After doing some research, apparently what I’ve experienced isn’t that uncommon.

But the side effects of some of these drugs can be crazy, from increasing or suppressing appetite, changing our emotions or even altering the texture of your hair (thanks, Arava, for giving me the wavy hair I always wanted)—and that’s without considering some of the more dangerous potential complications. But I guess that’s the price we pay for feeling (mostly) normal.