#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 nine: worth overdoing

Today, I really overdid it.

All week, I could feel  my body fighting something off. I was fatigued and achy. My throat become sore later in the week. And then, like an idiot, I took my methotrexate injection; I was so drained, I didn’t even think about what a bad idea that was.

And today, I woke up feeling terrible. But today was my local Walk to Cure Psoriasis, and I’d been looking forward to it for months; I wasn’t going to let a little thing like being sick get in the way. Plus, my mum and mother-in-law were coming in from out of town, and I didn’t want to disappoint them.

So, the Professor and I got up early, and somehow made our way over to where they were holding the walk. And it. Was. Cold. Friday was sunny, beautiful, with a high of 83. Sunday is supposed to be about the same. Today? I don’t think it got out of the low 50s, if even that. But we made it through the walk, and then headed out to get breakfast. That was helpful; I had fruit and a bagel and a big glass of freshly squeezed OJ. That perked me up a bit, so my mum, mother-in-law and I headed over to the local flea market. We all found some great stuff—including, for me, this great, 1940s citrine ring and a great, vintage needlepoint broach—before heading back to my mother-in-law’s place. The Professor and I had planned to stay for dinner, but the whole week of just relentlessly pushing myself and ignoring the signs my body was giving me came crashing down. We came home, and I went to sleep.

I don’t know why I keep doing this; I think I can just push through feeling terrible without any consequences. And that’s just not true. Even though I’ve had psoriatic arthritis for almost six years now, it’s a lesson this crazy disease keeps beating me over the head with: There are consequences for every action. Doing one things means I can’t do something else. And ignoring that gives me a day like today. Still, even if it wasn’t necessarily the best of ideas, I’m glad I went out to the walk; it was to see so many people supporting people like me. And that’s just what the doctor ordered.

Walk to Cure Psoriasis

I’m going to go out on a limb and say that pretty much everyone who reads this blog either has an autoimmune disease or knows someone who does (or has stumbled upon it because I often use song lyrics for blog titles. Oops.). That means we all know the effect arthritis or lupus or AS can have on people we care about, and most of us know how expensive and exhausting it can be just to feel normal. We know how many pills and shots and infusions we need to sometimes just tread water. And I think we can all agree that the most important thing would be a cure for all of these autoimmune diseases.

And—at least in my case—that’s why we walk. We pull our protesting bodies out of bed too early on a Saturday morning to walk 5K. We harass ask our friends and families for funds. We write letters to the editor trying to raise community awareness.

Which brings me to my point: I am walking in the 9 April Raleigh, N.C., Walk to Cure Psoriasis. I would love to have more support. Here’s the email I sent out to friends and family:

Dear friend,

I am asking for your help with a cause that means a lot to me: improving the lives of people with psoriasis and psoriatic arthritis.  In my efforts to make a difference, I am participating in the Walk to Cure Psoriasis.

I believe most people would be surprised and saddened by the impact of the disease and the lack of awareness about how difficult it is to live with. Psoriasis is more than a simple skin rash.  It often can encompass major areas of the body and can even become debilitating.

As many as 30 percent of people who have psoriasis will also develop psoriatic arthritis, which is a very painful and potentially crippling form of arthritis.  In addition to the skin condition, they have to deal with intense joint pain, swelling and other symptoms that limit their ability to carry out the routines of daily life.

More than 7.5 million Americans have psoriasis, yet very little is being invested in public education or research for a cure.  I am asking for your help.  Through the Walk to Cure Psoriasis, we will bring in money to help find a cure and create public awareness about the disease.

Please support me by donating online or joining me on my walk.  Your help is greatly appreciated.

Or, join in at a walk near you!

getting crafty

So, as I’ve written before, I’m doing the Jingle Bell Run/Walk for Arthritis tomorrow. Since the theme is (clearly) jingle bells—we’re to tie them to our shoe laces and everything—I decided to stop at Michael’s and pick up so small jingle bells and beads and make some earrings with some of the leftover chain I had from making a skeleton key necklace. Though the bells weren’t as small as I’d hoped, it still looks very festive and fun, which is the idea.

I only wish there were more people on my team, so I would have a reason to make more than one pair! They were surprisingly easy (and they dress up my DIY earring holder very nicely), even with a hand that still refuses to grasp things or twist.

Regardless, I’m pretty excited about attempting walking 5K tomorrow and being a part of something so much bigger than I am. I’m glad the Professor will be there with me; I wish they would have let dogs go, too! We got Otis an adorable knit sweater, and he would have looked positively festive with his red sweater and green leash.

It’s got my really revved up for the Walk to Cure Psoriasis in April, which I will also be doing for the first time next year. It’s kind of funny; when I posted my first 30 things about my chronic illness during Invisible Illness Week, I never expected it would prompt me to become so much more involved with other spoonies: becoming a National Psoriasis Foundation mentor, blogging more openly about my illness, participating in this 5K and even getting interviewed for articles (which was weird for me, since I’m usually the one asking the questions, but that’s another post entirely). Just one little post brought so much change. I guess it’s really hit home what Gandhi said: We must become the change we want to see.

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.

not so young, not so fast

via National Psoriasis Foundation

via National Psoriasis Foundation

World Psoriasis Day is today, Oct. 29. The focus this year is something near and dear to my heart: the challenge of childhood psoriasis.

While I may have been too old for teddy bears when I was first diagnosed with psoriasis, I was pretty young: about 14 or so years old, a freshman in high school.

I was lucky to have not been teased so much for the fact that I had psoriasis as much as I was for being Canadian, but it was still there. I was certainly luckier than some kids: 38 percent of kids who responded that they had been bullied in the last six months (in a National Psoriasis Foundation survey) said the bullying was the result of their psoriasis. When I first read those statistics, my heart broke a little. Sure, kids can be cruel, but this kind of ignorance is inexcusable.

What’s also devastating is this: There are no FDA-approved treatments for children with psoriasis. None. Zip. Nada. And every year, 20,000 children under the age of 10 are diagnosed with psoriasis. I know from experience that there wasn’t a lot offered to me when I was diagnosed. My dermatologist at the time didn’t tell my mum, who came to the appointment with me, and I that it was an autoimmune disease; in fact, he let us leave the appointment thinking it was a reaction to a new shampoo. I’m pretty sure the only thing he gave me was something tar-based that I was supposed to leave on my head all night long and rinse out in the morning. It smelled awful, it made my hair look and feel terrible and it didn’t do me a whole lot of good. I remember at subsequent follow-up appointments, he blamed me because my plaques hadn’t cleared up yet, saying I must have not bee using the topical properly. At the time, I believed him, even though I followed the prescription directions to a tee. Now, of course, I know that wasn’t the case. Psoriasis doesn’t always respond to medication and it certainly was not my fault the plaques were still there by the next time I saw Dr. Jerkface.

I don’t think kids or people of any age should have to go through that or the teasing or, yes, bullying of their peers. Enough is enough. Kids are being forced to grow up so damn fast these days and those with chronic illness have that extra burden on their shoulders. We should be doing all we can so that they can stay young and innocent and carefree as long as possible.

we will be victorious

I wish I could say the long delay in between blog posts was the result of me being pain- and psoriasis-free, that I’ve been so busy living my new and fabulous life that I have just not had time to blog. I would love to say it, but it would be patently untrue.

Un-awesome things that have happened to me this week:

  • Literally crying while trying to button up a shirt, which lead to me throwing it onto the ground, stomping on it a few times and throwing on a nice, easy no-buttons-or-zippers tank top and calling it a day.
  • A lovely migraine with my trademark nausea, light and sound sensitivity, and tunnel vision.
  • Flaring in joints I didn’t even know I had.
  • Having dreams of telling my boss off that were so real, I thought I had done it and expected work this morning to be awkward. (It wasn’t.)
  • Falling into the bad eating habits of my teenage vegetarian foray.
  • Working more than 50 hours—and that’s with taking most of Thursday off. (As in, I went into work for a meeting, and that’s it.)
  • Much, much more!

I can’t complain too much, though. I’ve had some pretty great things happen to me, too.

  • Connecting with one of my National Psoriasis Foundation mentees! I got one who was born within the decade, and she’s really great. Really, all my mentees are pretty awesome, so I have no cause for complaints there!
  • I finally figured out the name (and downloaded) of the Muse song they performed when the mister and I saw them on tour with U2. (Hence, the post title.)
  • Finding a copy of Vegetarian Times with comfort food in it! I can’t wait to try out some of them this week.
  • Teaching Sunday school to a bunch of really incredible kindergarten-age kids and volunteering with the middle school youth group. I love those kids!
  • Getting an opportunity (maybe) that I can’t talk about yet but would be super amazing if it comes to fruition!
  • Reading the many, many awesome patient (and fashion!) blogs out there. Lindsay’s posts—especially with pictures of her adorable ray-of-sunshine daughter Briony—always brighten my day.
  • Oldest Living Confederate Widow Tells All” by Allan Gurganus. Such a great book

Still, as rough as last week was for me disease-wise, it was still a pretty good week. I think I’ll take a cue from my new favourite Muse song (“Uprising”) and have a really kick butt week. And maybe, you know, blog more, too.

one to one

So, I’ve gotten a few questions about the National Psoriasis Foundation One to One Mentoring Program. It’s a fairly new program that allows those with psoriasis and/or psoriatic arthritis to be matched up with mentor volunteers who have similar experiences. They try to match us with people of the same gender, similar age and geographic area, but that obviously doesn’t always work. People can also select if they have a gender preference; if so, I imagine that factor is given preference over geography and age.

To be a mentor, we had to go fill out a volunteer application form, submit references and go through an hour of training. We also had to submit a practice e-mail with a dummy patient, showing how we would respond when we got sent a mentee match. The training was really informative and helpful. There were a bunch of us new mentors on the call — and a few who had been doing it for awhile — as well as NPF workers and a psychologist. I definitely felt a lot better prepared after that call, especially since they sent us the slides they used and a handbook.

All the information we get on mentees is confidential; we can’t talk about them to other people at all. But everyone struggles with chronic illness: wanting more information, sometimes a shoulder to cry on, sometimes just to talk to someone who has been there and understands what he or she is going through. That’s what the One to One program is all about. The only negative thing that I have to say about the program is that I wish it would have come out sooner! It would have been super helpful to me more than a decade ago when I was first diagnosed with psoriasis, and even five years ago when the psoriatic arthritis hit. But it’s doing a world of good now, and I’m so glad that I can be a small part of it.

waiting for my real life to begin

Awareness is a funny thing, one of the many things that changes once you’ve been diagnosed with a chronic illness. The healthy have the luxury of not needing to raise awareness or not needing to learn how to be an advocate or being able to stay quiet. But I think it goes deeper than that.

Even in the first few years of having psoriatic arthritis (and certainly for the years I had psoriasis — which I hadn’t even been told was anything other than a skin condition), I had no need, no desire to sound the alarm and marshal the troops to raise the public profile of PsA. I didn’t blog about it. I didn’t research it. I didn’t really talk about it. I certainly didn’t make any concessions for it, didn’t allow that things were going to be different for me now.

But raising awareness of my own illness in particular and chronic and invisible illness in general has become important to me, especially now that I’ve allowed myself to be angry and grieve and to slow down and (try to) be OK with not being the same girl or doing the same things I used to be and do. There are just so many misconceptions about chronic illness and arthritis, it just seems impossible to not add my small voice to the chorus to give good, real information. It’s important to stand up and to bust through the ignorance that allows people to think arthritis is a disease of the elderly and that being sick means looking sick and that I could get better if I wanted to.

I also think it’s important to help those who are struggling, who are newly diagnosed or who just want to feel they’re not alone. There are so many ways to do that: posting on message boards, chronic communities or on blogs; starting or participating in support groups; being willing to blog about what chronic illness looks like for me. But, I’m lucky in that the National Psoriasis Foundation has recently started up a really cool program: the Psoriasis One to One Mentoring Program. Mentors are linked up with those requesting assistance for peer support; we’re here to listen, to help (not to give medical advice, though!) and to just be there. We get it; we have psoriasis and/or psoriatic arthritis, too.

I think that’s kind of crucial. All the awareness-raising would be a little hollow if it didn’t allow us to reach out to one another. How can we expect others to care if we don’t care ourselves?

(Image via We Heart It.)