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

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!