#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.

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#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 13: ‘if a fair world was what you were looking for, he said, you had to appreciate irony’

In the world of patient bloggers, there’s a lot of talk about what’s fair. And I get, really. It’s not fair that we should have to deal with these diseases. It’s not fair that we should be in pain and exhausted and fight to remember words. It’s not fair that our loved ones should have to watch us struggle to do ordinary tasks. It’s not. I know.

I have days when I strive—and sometimes fail—to accept that. I have days when I just want to stand in the middle of a room, stomp my feet and shout, “But it’s not fair!” Or maybe, “Why me?”  Still, usually before long, I see the humour in that image and shake it off.

And honestly, to answer my whiny unhelpful question with another question, “Why not me?” If not me, then who? I don’t know if it’s just who I am or if the PsA and psoriasis had a hand in making me this way, but I feel like I’m a pretty strong person. Most of the time, I’d say I cope with this just fine. If not me, then maybe the person who would have gotten this in my stead wouldn’t be able to deal with it, wouldn’t have an amazing husband, great doctors, awesome friends and a boss that understands—or at least tries to.

I guess the irony in my life is that I’ve got it pretty good, even with dealing with a chronic, life-altering disease. So, maybe, instead of asking, Why me? all the time, I should do better at appreciating what I’ve got. (But don’t get me wrong—I reserve the right to have a pity party every now and then! It’s part of the membership perks of being a Chronic Babe.)

 

(Title via Pete Dexter‘s “Spooner.”)

poetic license

I was reading Sharon’s blog this evening. She mentioned Laura Hershey in her most recent post and a poem Hershey had written. After getting lost in Hershey’s writings and mourning her loss (she was only 48 when she died in November) and the fact that I stumbled across her work too late, I went on and read the poem. It definitely hit home for me—I’m going to print it out and tack it to my wall at work—and I hope you all enjoy it as much as I did.


You Get Proud by Practicing
By Laura Hershey

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

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.

pampered

Is it Saturday, yet?

This weekend will be the first one in awhile that I haven’t had to work. Conveniently, my mum also doesn’t have to work Saturday, so she’s venturing out my way and we’re going to get some mani/pedis. Normally, I do my own nails every week (right now, they’re OPI’s Who The Shrek Are You? And, yes, they are Shrek-coloured), but it will be nice to let someone do them for me.

Doing something for myself is so important, even though I’m feeling more like my old self. I find it really easy to go not be so hard on myself when I’m feeling down or exhausted or in the midst of a flare. It’s so much harder to cut myself the same slack when I’m doing ok. But thanks to an awesome Christmas present from my dad (thank goodness for Spa Finder gift certificates), I can make sure I do just that.

an addition

30 for 30 5 days, 6 outfits

Image by karenthings via Flickr

Some of you may have noticed the new tab at the top of my header. (If not, no worries.) I’ve decided to embark on Kendi’s 30 for 30 challenge: 30 items of clothing (including shoes, excluding all other accessories) and no shopping. I’m on day two, and so far, I’m hanging in there. I’ve been sick with some kind of cold/flu/sore throat demon the last couple of days, and it was actually kind of nice to just have a few pieces from which to pick. It’s certainly made getting dressed so much easier.

But, I just thought I’d give those of you interested in what I wear every day a head’s up.

In other news, this sore throat has lead me to try to talk as little as possible; in fact, I’ve taken to whispering whenever I do have to talk, since it doesn’t seem to aggravate my throat as much. And it’s kind of funny, but a throat that feels raw—as though someone rubbed it with rough sandpaper—makes me consider all my words, think about whether I really want to say what I’m about to say. It’s something I have a tendency to not do, usually; I tend to speak without thinking, a very bad habit.

Who knows; maybe this sore throat is a good thing, eh? The beginning of a new era. But, honestly? I would settle for thinking before I speak just some of the time.

raise the roof with shouts of joy

What a crazy few weeks.

I’ve been plagued for the last couple of weeks with these weird headaches; they feel almost like migraines—head pressure, nausea—but the pain isn’t nearly as intense, and no light sensitivity accompanies them. I’m not really sure what’s causing them, though I have some ideas: stress, lack of sleep or maybe some food trigger. (Or maybe it’s my new awesome glasses. More on those later!)

I guess it’s kind of a blessing in disguise, though; by the end of the week, it makes me go to sleep earlier, which is always a good thing. I don’t sleep well in the best of circumstances, so a few extra hours can really make a difference.

Even with this weird new symptom—and the feeling, despite the Enbrel, the MTX, the Plaquenil, that my symptoms are hiding just beneath the surface, that I’m not in a true remission—I have had a good week; I’m enjoying my new position, my new employee has arrived and she is awesome. My boss is happy with me. I’ve finally found a good concealer that hides my under-eye circles and looks natural. I’m going to get to make some jewelry this weekend, and eat some good food while watching the Steelers (I married into a Pittsburgh family). I see my NP this week and have good news for her for once, instead of the same slow and steady decline. My psoriasis is all but cleared up; I’ve just got a few small patches on my scalp, hidden by my hair. Hell, I’ve even worn heels twice this week!

Despite the bad, it’s really easy to find the good this week. And for that, I am really, truly grateful. I am reminded of the promise contained in this verse, that even when things are bad, they will get better:

God will let you laugh again; you’ll raise the roof with shouts of joy. [Job 8:21]