brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

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

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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.

loving what you do

What a difference a year makes.

It amazes me to think that this time last year I was actively looking to leave journalism. I was desperately unhappy with my work situation and having to work insanely long production days  simply because of a lack of planning on my boss’ part. I’m convinced this was, in large part, responsible for the insane flare that eventually saw me back on Enbrel, methotrexate and Plaquenil, a therapy I’m still on to this day.

Now, I’m the boss. I am working more hours than I was at this time last year, but I love every one of them. I have discovered a knack for writing columns—thanks, I’m sure, to this blog, which has helped me develop a more conversational tone than is appropriate in the average news story. Even on the verge of crazy weeks, such as this—a back-to-school section, two weekly papers, a monthly paper, the start of football season and weekend events galore—I’m excited to be up to my elbows in what I do.

And though my psoriatic arthritis is not completely controlled and is not where I’d like it to be—and that pesky tendonitis in my left wrist still bugs me from time to time—I’m living well in spite of it. That’s not my goal; I’d love to be back in the remission I enjoyed after my first, long flare. But even if that’s not in the cards for me right now, I’m surviving, even thriving, where I am. And that’s enough.

just desserts: vegan peanut butter chocolate chip cookies

I love peanut butter chocolate chip cookies. Love. Them. Before I went vegetarian/vegan, I would get these delicious cookies from the local grocery co-op near my work; however, as they were made with dairy and eggs, I had to give them up.

Then—inspired by Chocolate-Covered Katie—I realised I could just turn my favourite peanut butter cookie recipe vegan. So, I did. And the results are delicious! (Except when I get too impatient to eat them, and I take them out before they’re fully done. They’re still tasty, then, but they don’t stay together very well. Oops.)

Amazing vegan peanut butter chocolate chip cookies

2/3 cup peanut butter

2/3 cup vegan margarine

2/3 cup brown sugar (I’ve also used agave, with yummy results. Use less and reduce the liquid if you go that route)

1-1/2 teaspoons Ener-G egg replacer

2 tablespoons water

1 teaspoon vanilla extract

2 tablespoons non-dairy milk (I’ve used soy and almond)

3/4 cup non-bleached all-purpose flour

1/2 teaspoon baking powder

1/8 teaspoon salt

non-dairy chocolate chips to taste

 

1. Preheat oven to 375 degrees. Mix egg replacer and water in a small bowl. (I use a whisk. You really need to make sure there aren’t any hidden lumps, which is fun.) Set aside.

2. In a big mixing bowl, cream together peanut butter, sweetener and margarine.

3. Mix in soy milk, egg replacer and vanilla.

4. Sift in flour and baking powder a bit at a time. Add salt.

5. Add chocolate chips.

6. Place cookies on a lightly greased cookie sheet.

7. Bake for 8 to 15 minutes or until edges are lightly browned but centre is still soft.

8. Let cool and enjoy!

 

blue bird

I must be insane.

This is one of the busiest times of the year for me, professionally. My newspaper is small enough that we run the pictures of all the graduates in a keepsake edition, and that means hounding the school district PIO for the pictures, editing them (greyscale, curves, resize, save as!) in Photoshop, matching the student ID number (which is how the pictures are named) with the master list and renaming the files alphabetically, double checking the names, putting mug shot boxes on the pages, filling them with pictures, resizing the pictures again, putting the names under the pictures, double checking the names again….

Plus, you know, we still have all the regular, small-town stuff to cover, which is a lot since the weather is finally turning nice.

So, what do the Professor and I decide to do? Paint our apartment, of course!

Sigh.

It’s going to look awesome when it’s done, but it’s definitely exhausting me. Painting is hard work on the joints! And, since we’ve been doing it after I get home from work, it makes for some long days. But, I have tomorrow off for Memorial Day, so we’ll do some more then—after I sleep in some. I can feel it in my bones; if I don’t start taking better care of me, I’ll be paying for it.

(Also, for those wondering how the cake batter shake turned out, it. was. awesome.)

#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.

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]

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.

you have to walk a mile in her shoes

One of my favourite pairs of shoes.

On my way home from work yesterday, I decided to stop at DSW for a little shoe shopping, ostensibly to pick up a pair of work-appropriate flats to continue babying my aching joints and muscles.

I wandered through the aisles, finding a few I liked. But by the time I hit the end of the women’s shoe section, most of the boxes I held in my arms contained pumps.

Oh, how I enjoyed trying them all on! I sashayed around the store in my favourites, feeling sexy and feminine and powerful in a way I haven’t in in a long time, since, well, since I was last able to wear heels comfortably.

Though there was one pair of shoes I especially loved and another I really struggled with leaving behind (I’ll take them in an 8.5, thanks!), I didn’t end up buying any. Even so, that experience was a boost I needed; though I may not be 100 percent ready yet, I’m closer to being able to wear heels full-time than I’ve been in a long time. And knowing that is worth more to me than any (extremely hot) Ann Marino pumps.