(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!)
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
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.
I used to be alone.
(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.)
Posted in healthcare, i so hate consequences, music, poetry, your secret's safe with me
- Tagged 30 day experiment, beauty, chronic illness, HAWMC, memories, my chronic life, PsA, psoriasis, psoriatic arthritis, upside-down frown, WEGO Health
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.
Posted in book love, immune, quotes, well ok maybe it was just borrowed
- Tagged 30 day experiment, advocacy, chronic illness, Conditions and Diseases, Frank Herbert, HAWMC, health, methotrexate, National Psoriasis Foundation, Nelson Mandela, part deux!, PsA, psoriasis, psoriatic arthritis, WEGO Health
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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.
Posted in but you don't look sick, christmas spirit
- Tagged 30 day experiment, arthritis, chronic illness, Conditions and Diseases, HAWMC, health, Loch Ness Monster, my chronic life, PsA, psoriasis, psoriatic arthritis, WEGO Health
I’m pretty late jumping on this, but I was named one of the top 40 arthritis blogs by NursingDegree.net! Most of the other blogs on there I already have on my Google Reader list, but there were a few new ones I can’t wait to devour.
Thanks, NursingDegree.net (and Corrine for letting me know!) Happy reading, guys!
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 whether—after going through nine months off my medications—I’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 off—I’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.
Posted in changes, patients for a moment
- Tagged 30 day experiment, advocacy, arthritis, causes, chronic illness, Conditions and Diseases, HAWMC, health, memories, my chronic life, patient bloggers, PsA, psoriasis, psoriatic arthritis, that writing thing, WEGO Health
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.
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
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.)
Posted in book love, but you don't look sick, dance dance holiday, i so hate consequences
- Tagged 30 day experiment, advocacy, arthritis, chronic illness, Conditions and Diseases, HAWMC, health, my chronic life, PsA, psoriasis, psoriatic arthritis, upside-down frown, WEGO Health
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!
Posted in but you don't look sick, ChronicBabe, public displays of friendship
- Tagged 30 day experiment, advocacy, arthritis, chronic illness, Conditions and Diseases, HAWMC, health, patient bloggers, upside-down frown, WEGO Health
My blogging is normally done while I’m stretched out on my brown coach, Otis (the pup) curled up beside me. Sometimes, Remy (the kitten) hunkers down on my chest, leaving me unable to see the monitor or the keyboard. (Hi, typos!)
In a perfect world, I would have my own office—a space for me to decorate to my own tastes. There would be a wall filled with frames of pictures, prints and other things I love. There would be shelves filled with books, lots of colour and fresh flowers. I’d have a little iPod stereo, so I could play my music. Years of working in newsrooms makes it hard for me to write when it’s completely quiet. I like having things going on around me.
Back in the real world, I’m sitting in my living room, this week’s edition of my newspaper on the coffee table. Normally the Professor is either watching some James Bond or playing Modern Warfare while I write, which is at least some background noise. Our drying rack is set up with some laundry underneath our breakfast bar. I can see most of the apartment from here—including how much I really ought to be tidying up instead of writing. It’s distracting.
I think if I can’t have my own space, a coffee shop would be the next best place for me to work; there’s plenty of noise, plenty of coffee and it’s where I used to study when I was in university. I think having a dedicate space for my work—including blogging but also crafting and copy I bring home from the paper—would be really helpful. It would be a place I could go to be creative and a place that was mine.
Still, I do like that I’ve got Remy and Otis nearby, even if Remy has decided to lay across my hands, making it extra fun to type. I think she’s trying to give me a hint.