#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 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 26: totem

Hoaxed photo of the Loch Ness monster

Image via Wikipedia

I had a hard time coming up with a spirit or totem animal to describe my condition. I mulled it over all day, bringing up and discarding animal after animal. I was about to give up and just phone in something for my blog, when it hit me; it had been staring me in the face all along.

My spirit animal is definitely the Loch Ness Monster. (I know, right?)

Just like the good ol’ Nessie, psoriasis and psoriatic arthritis are kind of a mystery; people really aren’t sure what causes it, and there’s certainly no cure. The information floating around in people’s minds about it is hazy and fuzzy, like photographic evidence of the Monster. Some people don’t believe it’s real, just like some I’ve encountered with their kooky opinions on autoimmune arthritis.

My experience with psoriasis and psoriatic arthritis have been monstrous at times, too; the flares, the embarrassment, the pain, the oddity of having arthritis at 20. And the worst part: Never knowing when I’m going to flare, when I’m going to feel bad and when I’m going to feel good—or at least better.

I kind of like the idea of equating my diseases to an animal, especially a potentially fictional one. (Just kidding—Nessie is totally real.) It’s certainly got the potential of making me smile when I’m feeling especially crappy—and that’s definitely something I can use in my arsenal.

#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 24: the best day ever

I think it’s a really awesome idea to think about the last week and be grateful for something that happened in it. There was a lot of work to be done, crammed into a four-day work week. But I think the best part came Thursday night. The Professor dug out my old GameCube. When we were in university, we would pay the Cube all. the. time. And doing that again this week brought a lot of that back—the nervous, flirtatious part before we officially started dating; the giddy early parts of our relationship; the falling in love parts; all of it came rushing back as we beat the crap out of the other team in Mario Kart: Double Dash and Super Smash Bros.

Spending that time with him—and all the time I spend with him—that was easily the best part of my week.

#HAWMC day 23: rhyme-tastic

Alright, guys. Today’s prompt for the Health Activist Writer’s Month Challenge is to rhyme Dr. Seuss-style. I’m not going to lie; I’m kind of over all the rhyming that’s been going on this month.

Instead, I leave you with the poem “Health is Wealth” by Raja Basu:

Health is our most precious wealth, I hope you agree
No doubt, health is the sweetest fruit of our life’s tree.
Money is certainly important, and so is social prestige

But it is a good health that is the source of a constant bliss.
You may have the money to tour the world, but can’t if your health does not permit
You can buy all the food of the world, but your bad health will not let you eat.
You might have huge honor in the city, with everybody bowing before you

But you will fail to enjoy it, if you regularly develop health problems new.
In this way the bad health will always play a serious bar
In the way of your enjoying what you have, wealth, house or car.

On the other hand the good health is a source of constant happines
That will automatically turn your life into one of charm, pleasure and grace.
Take good care of your health, and develop a body that is sound and strong

And ensure a life that is happy and charming, besides being long

#HAWMC day 22: more cowbell

There are so many things I wish were actual factual prescriptions for psoriasis or psoriatic arthritis. Take shopping, for instance. I wish at my appointment next week, my NP would turn to me and say, “Nessie, you know what will cure what ails you? A trip to the mall or that awesome thrift store or the flea market. Girl, you need to get your shop on.”

Spending the whole day in bed reading would be another kick-butt Rx. “Nessie, no more of this working hard nonsense. For the next week, you need to spend the day in bed, reading all those books you’ve started but haven’t had time to finish.”

Ooh, I wish eating red velvet cake (or, better yet, red velvet cupcakes!) was a scrip. “We need two red velvet cupcakes over here—STAT!”

Getting dressed up and going out somewhere fun—like dancing or to a show—why can’t that be a prescription?

Clearly, we all need to ditch Dr. No Fun and start listening to Dr. Awesome—the kind of doc that prescribes stuff like I mentioned above. But we all know pretty much all of those things would not really make us feel better. (Well, not for very long, anyway. I’m looking at you, red velvet cupcakes.)

What do you wish could be a prescription? (More cowbell, definitely.)

#HAWMC day 21: run lindsay run

Though there are many people I admire online and off, I want to stop and give props to someone I met through blogging: Lindsay of RunLindsayRun fame. (She also has a mostly gluten-, dairy- and sugar-free food blog.)  Lindsay is pretty kick ass; she owns her own business, she’s a mommy to an adorable toddler, she’s a wife—the list goes on and on—and she does it all with rheumatoid arthritis and fibromyalgia. She’s also kind, sometimes snarky and outrageously funny. When I first discovered her blog, I remember quickly devouring her archives; by the end, I felt as though I knew her.

Lindsay is hardcore; she puts herself out there on her blog: her triumphs, her failures, stories that don’t show her in the best light. She doesn’t make light of her conditions, but she shows how she’s living well in spite of them. All in all, her health activism is one of the best kinds: a life well-lived, surrounded by people she loves and who love her. She shows that it is possible to have an awesome life, even while you’re struggling with the pain, fatigue and, yes, heartache of chronic illness.

So, here’s to Lindsay: Keep on keepin’ on!

#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?

#HAWMC day 18: right on schedule

As a journalist and editor, I don’t really have a typical day; I might copy edit or write one day, paginate and proof the next, and go out in the field and do interviews the next. But, I guess I could write down what my schedule looks like for this week.

Monday
7:04 a.m.: Alarm goes off. I hit the snooze button in nine-minute intervals until about 7:30.
7:31 a.m.: Shower time. It’s slow going, and I have a lot to do: hot oil treatment, shampoo, exfoliate my face, cleanse my face, condition, exfoliate the rest of me, shave.
8:03 a.m.: Breakfast time. Today I had a bowl of corn Chex, a banana and a mug of Lady Grey tea with honey. I surf the Web until about 8:30.
8:29 a.m.: Time to get pretty. I blow-dry and flat-iron my hair, brush my teeth, moisturize my face and body, put my make-up on.
9:05 a.m.: Time to get dressed. I had the worst time deciding what to wear this morning. Since I had a meeting tonight, I had to look extra professional. I eventually decided to go with wide-legged trousers, nude shell and a belted cardigan. (In case you cared.)
10:15 a.m.: First meeting of the day. I’m on my feet for way longer than expected—until about 10:45. It was a relief to get into my car and drive to my next appointment.
11:05 a.m.: Second meeting of the day. More sitting. Much better.
11:37 a.m.: Back at the office. I start going through the 300-plus emails I got over the weekend. Sigh.
12:04 p.m.: Lunchtime. I have some baked ziti with spinach the Professor made last week. I type up what came out of my first two meetings while I eat.
1 p.m.: Coffee break! My reporter and I walk down to the coffee shop, where we get entrenched in a 20-minute conversation about pie. (Seriously. It was awesome.)
1:22 p.m.: We head down to the local cafe to get a delicious cookie.
1:38 p.m.: Back at the office. I start fixing 20 photos from my Sunday event in CMYK and greyscale for the paper, since I don’t know how much colour will have at this point.
2:45 p.m.: Finally done with pictures. I start on stuff for our market-coverage freebie that gets sent to all the homes in our area.
3 p.m.: Get done with everything I can do until the reporter gets back from her meeting and gets me a story. I start putting the community calendar together, culling past events and adding new ones.
3:45 p.m.: Reporter gets me the story. I tell her it needs a graphic element, so she gets me the info I need for it. I futz around until I get a graphic I think I like. I put the four-page extra together.
4:45 p.m.: After printing out the proofs, I realise I hate the graphic. It’s too big. I make it smaller.
5:30 p.m.: Extra proofed, PDF’d and sent. I make my dinner—a peanut butter sandwich. Yum.
5:34 p.m.: I decide to work on the photo page for the weekly paper using those 20 photos I Photoshopped earlier. I use six of them.
6:42 p.m.: I head over to my school board meeting. There’s no parking, so I park in a nearby church and walk.
7:01 p.m.: The meeting starts. Throughout, I take notes on my laptop and write 1.5 stories for the weekly.
9:03 p.m.: Meeting’s out. Now, I drive 30 minutes home.
9:32 p.m.: Home. The Professor and I watch two episodes of “That 70s Show.”
10:24 p.m.: The Professor and I take the dog for a walk.
11 p.m.: We’re home. He settles down to play a video game, and I finish up some work.
12 a.m.: Bed time.

Tuesday
6 a.m.: Wake up. Wash face, brush teeth, make up, dress.
7 a.m.: Out the door. Drive 30 minutes to first appointment.
7:35 a.m.: Interview with student and her mom.
8 a.m.: In the office. Finish writing the story with the student/mom interview and write up the meeting from last night.
9 a.m.: Print out three stories that haven’t been proofed to copy edit. Reporter arrives.
9:15 a.m.: Proof reporter’s stories.
9:30 a.m. to 6 p.m.: Paginate newspaper.
6 to 7 p.m.: Proof pages.
7 to 7:30 p.m.: PDF pages, proof them one more time and send them to the press.
8 p.m.: Home.
8:04 p.m.: Walk the dog with the Professor.
9:12 p.m.: Home again. Watch a bit of TV or read a bit before getting ready for bed.
10 p.m.: Bed.

Wednesday
7:17 a.m.: Wake up. Shower. Blow dry and flat iron hair. Eat breakfast. Brush teeth. Make up. Get dressed.
8:30 a.m.: Off to work.
9 a.m.: At work. Check emails that I ignored Monday and Tuesday.
9:30 a.m.: Put up the eEdition of the paper.
9:47 a.m.: Put up the website and get later updates ready to go.
10:14 a.m.: Sigh of relief that busiest part of week is over.
10:15 a.m.: Talk with reporter about what we’ve got going on for the week. Assign stories as needed.
10:40 a.m.: Look at what other newspapers had. Curse if we’ve been scooped. Laugh maniacally if we scooped them.
11:40 a.m.: Go over the other newspapers in the company with reporter. Point out good and bad design. Eat lunch while doing it.
noon to 1 p.m.: Cover the office while office manager is out. Help customers. Take ads. Etc.
1 p.m.: Lay out monthly publication.
4 p.m.: Proof, PDF, send to press.
5 p.m.: Quitting time!
Then, I’m meeting a friend for (vegetarian) sushi! Yum.

Thursday
This Thursday, I’m taking the morning off because of how much I worked Monday and Tuesday. In the afternoon, I’ll write and I’ve got an event to cover.

Friday
It’s Good Friday! I’ll go to church, and then we’re heading to my parents’ house.

There’s not a lot of time in there for self-care, but on days I feel bad, I try to make time for myself. On the weekends, I usually take it easy, though I do cover weekend events, too. It’s a busy life I chose, and it’s often not compatible with taking good care of myself. But I love it, and that keeps me going.