year in review

Ah, yes, the staple of blogs, newspapers and radio shows everywhere: the year in review post/article/show.

2011 was a pretty good year for me, overall, so it’s good to look back at where I was then before considering how I want to make 2012 even better.

january.

I had just restarted Enbrel and was starting to feel better after the horrible slow decline of 2010. I got a promotion at my job (wahoo!), and my new reporter started. I was feeling pretty optimistic that things would be awesome.

february.

I fought the winter blahs and got an IUD. I got mad at people’s assumptions. I fell back in love with journalism, despite its potentially negative impacts on my health.

march.

I went ice skating—and learned to accept my limitations.

april.

I started the Health Activist Writers Month Challenge. I participated in the Walk to Cure Psoriasis. I was named a top 40 arthritis blog!

may.

I was incredibly busy with work, as summer events started rolling in and school events kicked into high gear before the end of the year. The mister and I painted our living room a lovely, bright blue.

june.

I traveled up to Washington, D.C., to visit friends and—best of all—present in and soak up the National Psoriasis Foundation’s volunteer conference! The mister and I celebrated three years of marriage. I set up a Facebook page for the blog.

july.

I had a bit of a nasty flare. I sewed my first garment. I turned 27.

august.

I got sucked in to Dragon Age: Origins (for the first time, anyway). I felt pretty (when they turned out the lights).

september.

I remembered 9/11. I worked Invisible Illness Week.

october.

I looked back on seven years with psoriatic arthritis. I posted my measurements for World Arthritis Day. Halloween! Real Thanksgiving! The mister and I visited my folks at their new home for the first time.

november.

I wrote a letter to my 18-year-old self. I started and didn’t finish National Health Blog Posting Month. I cooked my first vegan Thanksgiving.

december.

I worked an insane amount of hours, dropped off the face of the earth blog-wise, celebrated Christmas, joined the Christmas choir at my church, drove up to visit my parents and so much more. It was an action-packed month.

Whew! What a year. Peace out, 2011. Here’s to hoping 2012 is even better.

i’m loving … syd rocks

I was reading through my blogroll the day and stumbled across an awesome site: Syd Rocks. Sydney makes necklaces out of beach rocks on the shores of Lake Michigan. Why? Here’s a bit about her, taken from her website:

Sydney started her rock necklace business when she was only 8 years old. She found beautiful rocks on the beach of Lake Michigan and turned them into necklaces with a simple string. The necklaces were a hit among family and friends. She saved up the money she earned and planned to use the money for something important. Now she knows what that is…
In Sept. 2007 at 10 years old, after a lesion was discovered in her cheekbone, Sydney was diagnosed with LCH, Langerhan’s Cell Histiocytosis, a rare blood disorder. The cause of the disease is unknown and it is estimated that Histiocytosis affects one in 200,000 children each year in the U.S.
LCH is considered an “orphan” disease, meaning there is no government funding allocated  to research the best treatments and ultimately a cure. After a biopsy  confirmed Sydney’s LCH diagnosis,  Sydney underwent surgery to have a  port implanted in her chest to receive six months of chemotherapy along with high doses of steroids. Although
Histiocytosis is not classified as Cancer, it requires some of the same treatments.
Sydney has been doing well since she stopped treatment and plans to continue making and selling her rock
necklaces until a cure is found for LCH.
100% of the money earned from her Syd Rocks for LCH necklaces will be donated for medical research to find a cure for LCH and $10 from each t shirt sale will be donated to the Giving Rocks Foundation established to help other charities and projects Sydney has come to know and love.

Spoonies have to stick together, and I love that she’s been able to raise awareness about LCH in a tangible way. I know what I’ll be adding to my birthday list.

#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 17: be here now

Today was a really awesome day. The Professor and I spent our afternoon on a local farm tour, enjoying the sights and sounds of our area away from the hustle and bustle of our daily lives.

My favourite farm—other than the winery, which was just fun—was our first. The sun shone brightly and warmed our bodies. The sky was perfectly blue, not a cloud in sight. I felt a cool breeze and vegetation brushing my legs and feet, crunching underfoot as I walked. The sound of turkeys gobbling whenever they heard a loud noise, hogs snarfling over food, chickens clucking and kids running around, delighted at the day and the sights and the sounds. I’d describe the smells, but I’m still pretty congested.

Today was awesome even though I couldn’t be mindful about it—I was taking pictures for work, so I spent my time framing shots, getting IDs and striking up conversations. But those around me didn’t have those same concerns, and I could see the impact the day had on them. And looking back over my pictures, I can remember vividly just how everything felt and sounded and looked. It was a great day and a lesson in enjoying myself regardless of what I’m doing. Today could have been miserable; it was Sunday, and I had to work. But the Professor came along, and it was a beautiful day. And when I think back on it now, a smile makes its way across my face and my whole body just relaxes.

It was a great day.

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]

the end of an era

Happy New Year!

Image by smoMashup_ via Flickr

The last post of 2010.

I hope everyone has the happiest of New Years! To celebrate, the Professor and I are heading over to his parents’ house for dinner and then heading downtown for the First Night celebration, with fireworks and everything.

So, everyone be safe and have a great night, whatever you’re doing.

as big as saucers

So, in my continuing effort to take good better care of myself (see: adding a PCP to my army of doctors), I had an appointment with a new ophthalmologist today. I had my prescription checked (my left eye is now worse than my right) and she checked to make sure the Plaquenil hadn’t caused any damage (it hadn’t).

But, she decided to dilate my pupils several hours ago, and they are still ginormous. That, truth be told, makes writing really difficult.

So, instead, I leave you with a video of a flash mob performance of “Safety Dance.” You’re welcome.

round of applause

So, I was at about the three-quarter mark in a very long day, when I ventured a peek into my e-mail, not expecting much of anything. Instead, to my surprise, I found an award!

As it has been a pretty rough day pain-wise, it was a nice little pick-me-up to get an accolade. I’m glad people find my rambling helpful; I know it certainly helps me to get stuff off my chest here, instead of either bottling it up or spewing it all over the Professor (or both).

A lot of other great blogs were honored, too. Click on the image to find out who; maybe you’ll find a new blog to start reading; I know there are some on there I’ve never ventured into before.

all i have to give

via We Heart It

Giving back is hugely important to me, especially now that I have a chronic illness.

Before my slow downward turn, I volunteered at a local animal shelter; the same one, in fact, where the Professor and I eventually adopted Otis. I worked with the cats and was on the education committee, bringing dogs into elementary schools to teach kids how to respond appropriately to animals. I loved it, but it was a lot of hard physical work, so I eventually had to give it up.

Now, I teach Sunday school to a group of kindergarten-age kids, I volunteer occasionally with the middle school youth group at my church, and, as I’ve mentioned before,  I’m a peer mentor for the National Psoriasis Foundation. I enjoy these for different reasons, I guess in the end it really just boils down to two: I like helping people, and it makes me feel good.

Being around small children is rejuvenating, in a way; they are so filled with energy and life and light. The kids in my class love to laugh and draw and play Memory. They find the simplest things so joyful: colouring a picture, playing outside, talking about their pets and families. But the subject matter is also, of course, really wonderful to talk about. Talking to kids about faith—and about how they see God—is just really encouraging. I always walk out of Sunday school with a smile.

Now, volunteering with the National Psoriasis Foundation moves me in a different way. I’m connecting with people who, like me, have psoriasis or psoriatic arthritis or both. Some are older; some are younger. But we’re all bound together by one simple fact: We know what it feels like. I’ve had psoriasis for more than a decade; PsA joined the party about seven years after my initial diagnosis. I’ve had good doctors and bad doctors. I’ve been on drugs that helped, drugs that hurt and drugs that did nothing at all. The common thread is that I have been through what they have been through. Though people in their lives may be sympathetic (or not, unfortunately), I can be empathetic. That is very powerful. None of us are alone.

Volunteering, getting involved in whatever way I can, it’s essential. In giving to others, I also receive. And for someone who always has to worry about counting spoons, getting a few back every now and then feels like a blessing.

mr. bump

I have been giving myself shots for a long time. I started Humira injections in 2005, and since then, I’ve added Enbrel and methotrexate to the list.

For most of those five years, I used plain, ol’, boring band-aids to cover up the injection site.

But not too long ago, I had an epiphany: Why not use some of those fun band-aids? But that was easier said than done. Most of those bandages are marketed to kids, and they feature things like Cars or Hello Kitty or the new Strawberry Shortcake. I feared I would never find something whimsical that I could relate to to plaster onto my body every Sunday, after injecting the Yellow Dart.

Then, I did.

As a kid, I always loved the Little Miss and Mr. Men books. Even now, seeing them in the local used bookstore brings a smile to my face. And so I was thrilled to find “fabric bandages” with all my favourite characters on them, including Mr. Bump. (Right now, I’m sporting Mr. Strong!)

Sure, giving myself an injection every week kind of sucks, but now at least I can slap on Little Miss Sunshine or Mr. Tickle and find something to smile about, instead.