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.

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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.

#HAWMC day 25: red ink

Today’s challenge is to find an old post and edit it, revise it to how I would write it today. I like to think that I’m a fairly good writer; after all, I do it for a living. But even so, there’s always a way to make something better. Here’s the post I chose, and here is the new version:

This week’s Patients for a Moment question is easy to answer and profound at the same time: Who would you be without your illness?

That question is kind of simple but stunning in its implications. Unlike a lot of the bloggers who responded, I remember a time when I wasn’t sick; I remember being able to wear heels all week or stay up all night reading or go a few days (or weeks) getting little sleep, without any consequences. I remember when my life wasn’t filled with doctors visits, lingering pain and sleepless nights. I remember a time when I didn’t have to think about questions like this.

I noticed a lot of the others posted blogs about how they were glad for their illnesses, glad for the compassionate, strong, caring people it made them. Maybe I’m just not at the point they are at with accepting their illnesses and what it’s taken away, but I wouldn’t say I’m glad. I wouldn’t say the good its brought out in me has necessarily been an even trade with what I’ve lost. There are a lot of things I miss: not worrying about what I eat, not worrying about how much I work or how much medications cost and what I’ll do when my patient co-pay benefits run out on the only thing that seems to make a difference. I miss somethings some things I’ve never had and am not even sure I want, including the ability to talk about having kids without discussing how pregnancy will affect me and whetherafter going through nine months off my medicationsI’ll be in any shape to take care of a newborn. (Answer: Probably not.)

But, I am thankful, too, for what I have been able to accomplish, despite my illness. Even though some days I’m so drained I can barely make it through, even though I’m still recovering from a Thanksgiving to Christmas where I worked every day—with literally no days offI’m proud that I work in the field I do, with people out in the world who don’t know what I’m going through and who think what I produce is great, regardless. I’m good at what I do despite my illness. That’s a victory, no matter how small it may seem on days where I can’t even type because my fingers are so swollen, when sitting hurts as much as standing, when my brain is so foggy I can barely string three words together, much less write an article worth reading.

Who would I be without my illness? I’m not really sure that question is even productive, much less truly answerable. I am who I am because of my illness, at least in part. I couldn’t really say who I would be without it.

#HAWMC day 19: ‘it’s a living hell’

I was really prepared to write something grumpy; though today has been pretty good (we finished production at 5:20! That’s almost a normal quitting time!), I’m all out of sorts, at least partially because I haven’t taken Enbrel or MTX in two weeks because I’ve been sick.

But before I decided to unleash an angst-ridden post reminiscent of the Live Journal of a 15-year-old girl, I decided to check my email. And found this:

Life’s Greatest Risk

Excerpt from John 12:20-36

“Very truly, I tell you, unless a grain of wheat falls into the earth and dies, it remains just a single grain; but if it dies, it bears much fruit.”

Reflection by Ron Buford

A friend complained about his mom, a wealthy woman who wanted for nothing…but was miserable. “It’s a living hell,” was her constant refrain while shaking her downcast head, when even life’s smallest things went wrong.  This so bothered my friend that their time together was difficult.

Dressed up and driving to a party with the same friend one evening, we caught every green light along the way, sailing as if on a magic carpet. Finally, a red light stopped our flying.

I turned, looked at my well-dressed friend and passenger and with mocking tone and gesture  said, “It’s a living hell.”

Laughing, we pulled over and rolled out of the car.  From that day forward, when minor things went wrong, in unison we’d say, “It’s a living hell,”…and laugh. The phrase helped us see the relative ridiculousness of our angst, swimming on lakes of privilege. It also helped my friend suspend judgment with his mom. Anticipating her phrase, laughing, he began to say it for her, “I know mom, it’s a living hell.”

And then one day, instead of saying it, his mom actually laughed at herself. My friend let his old adolescent relationship with his mom die. A new adult peer-to-peer relationship was born. Both son and mom were set free. “Unless a grain of wheat falls into the earth and dies, it remains just a single grain; but if it dies, it bears much fruit.”

Prayer

Gracious God, there are things in my life that need to die in order for my life to bring forth a bumper crop of joy. Help me see what blocks joy in my life so that my life may glorify you today. It’s time Lord, it’s time. Amen.

(Source: UCC Daily Devotionals).

Well, that just turned my bad mood inside out. So, I’m deciding to be in a better mood for the rest of tonight (as short as that may be) and tomorrow, too. Because when the tiniest things go wrong, they can add up to what feels like a catastrophe—even though it’s not.

It’s a living hell, eh?

small doses

An ice skate

Image via Wikipedia

I did something I was afraid I would no longer be able to do today. The last time I went, it caused so much pain that it’s been two-and-a-half years since I tried it.

Ice skating.

As a child, my parents would have to pull me off the rink to get me to stop. I could skate forwards and backwards, execute skate-over-skate turns and loved being the end of the whip. I loved the schink-schink of freshly sharpened skates on smooth ice, having to skate fast enough to keep warm on outdoor rinks and getting hot cocoa afterward. I loved going to Play It Again Sports each year to pick out new skates. I loved everything about ice skating.

Last time I went (before today), I was hoping to recapture those same feelings, to feel like a kid again, if only for a few moments.

But it was not to be.

It was excruciatingly painful, and after just a few minutes, I was done with skating, though I fought through it as best I could for awhile, trying to allow those who were with me to enjoy themselves.

Today, skating still hurt, but instead of being frustrated that I couldn’t skate for hours on end as I could when I was six or eight, I tried accepting my limitations, resting when my feet hurt and skating when they didn’t. And while I’m nowhere near as graceful or steady on skates as I once was, I can still glide across the ice. I can still enjoy skating.

So, that’s one thing I got to take back from this psoriatic arthritis. And it felt pretty awesome.

(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.

keep fit and have fun

Netflix

Image via Wikipedia

All of us with chronic illness know how important it is to at least attempt some kind of fitness regimen. Psoriasis has been linked with metabolic syndrome, hypertension and diabetes, among many other things. Exercise can at least help reduce the risk of those things, along with eating properly, medication and more.

For me, exercise is important. I don’t do it as much as I should, and it’s so easy to get off track. There are a million excuses, even excluding the usual suspects (laziness, too busy, procrastination): flares, brain fog and mind-numbing fatigue, to just name a few.

So, what’s a girl to do? I try doing things that are enjoyable, to at least increase the probability that I’ll make time to exercise. I do yoga at home; Netflix even has a yoga for aches and pains available through instant stream that is incredible. It’s also about 45 minutes long, so I definitely have to plan that one into my day. Now that it’s warming up and the flare that plagued me last year has (mostly) eased up, I can kept back into my morning walks with my dog and joining the Professor on evening walks with Otis. I really enjoyed getting up and outside before most people were out and about; it gave me a good amount of time to just centre myself and get ready to start my day.

I think exercise needs to become a must-do for me; none of this putting it off to a later that never comes. I need a little accountability, I think, or maybe a reward system, like Elisabeth has. Anyone want to be workout buddies?

i’m here standing

 

via Toothpaste for Dinner

It’s kind of funny that my last post was all about heels and my enduring love for them, because today I spent the entire day in a pair of pointed-toe pumps.

 

But let me start at the beginning (and explain what makes this unbelievable occurrence even more extraordinary).

Saturday and Sunday, I worked my final two shifts at the large retail establishment at which I had worked for about three years; I worked eight hours on Saturday and nine hours on Sunday. It was kind of insane and illustrated just how far I’ve come since that first (again) shot of Enbrel a few weeks ago; the four or five hour shifts I worked around Black Friday left me exhausted and unable to move for the rest of the weekend.

Not this time.

After my shifts this weekend, I felt a bit sore, but nothing outrageous: My feet hurt a bit and my legs, but nothing more.

Today, I had an interview for a promotion within my company; to me, professional attire (and especially interview attire) will always mean heels. So, this morning, instead of looking sadly at my pumps before putting on a pair of flats, I put on my long pants, a silk top and a blazer (the tan one, not the black one; my psoriasis is acting up) and broke out a favored pair of more conservative pumps. Though I know they really had nothing to do with it, I’d like to think my heels—and the increased confidence they gave me—helped me nail the interview and get the promotion.

More likely, it was my hard work throughout the year and, if I’m honest, how much better I’ve been feeling lately. I would not have been able to drive for two hours, sit through a 30-minute interview, drive for another two hours and hang out at my office for six hours before driving 30 minutes home. No. Just a few short weeks ago, just getting up and going to work would have taken away so many spoons, I wouldn’t have many left over for much of anything.

Regardless, it was nice for my efforts to be lauded, nice to be able to wear heels again and so very nice to feel well enough to be up to both of those things.

D(r) day

US Navy 050627-N-6495K-036 Physician's Assista...

Image via Wikipedia

Today was my long-awaited trip to see my rheumatologist to find out if we could come up with some kind of plan to get me back on track. The Professor was with me, and he was very good at making sure I didn’t leave anything out—and if I did, he piped up. I definitely felt as though she heard me and understood how unlike myself I’ve been feeling.

The NP seemed shocked by how poorly I was doing when we ran down the list of symptoms: lots of pain, joint pain in new places (like my jaw, which pops all the dang time now), sleeping poorly, muscle pain, fatigue, brain fog, the weird (and likely) pleuritic chest pain…. It felt like the list went on and on. Both she and the student physician’s assistant with her gave me a full exam.

She decided to pull me off the sulfasalazine, but keep me on the methotrexate, the hydroxychloroquine (Plaquenil) and the NSAID. (She was flatly against the idea of Celebrex, which I suspected she would be. We’ll see how Dad takes it, though.) I’m back on the Enbrel, and she gave me a few samples to take home until I can get things straightened out with my insurance and the co-pay assistance program. Since Darvocet was taken off the market (and I wasn’t a huge fan, anyway), I’m going to give Percocet a try. If that doesn’t work, I’ll be on the Tylenol with Codeine, since I’m super sensitive to pain killers. She also suggested a steroid injection before I go up to Canada for the holidays, since it should help me get through the stress of driving up and driving back.

I’m hopeful this will work. I was certainly doing better while on Enbrel, and maybe in conjunction with the Yellow Dart and the Plaquenil, I’ll start feeling like myself again. Maybe I’ll even be able to pull my heels out of the closet again. That seems so far from where I am right now. But after that appointment, one phrase is back in my vocabulary: I hope.