#HAWMC day 28: not anymore

(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!)

Not anymore

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
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(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.)

From “Confessions of an RA Superbitch”

This just popped up on my Google Reader, and it was too good not to share. It’s nice to know that other people see what we’re going through, eh?

Hubby: Honey, you are doing so well. You manage to get up every day despite debhilitating pain and stiffness and still remain the most positive person I know.

Me through tears: You don’t get it. The ONLY reason I do get up every day is for you and our son.

Hubby: But that’s ok because you get up.

Me through worse tears: You don’t get it. That’s the point. I don’t want to.

Hubby: No! The point is that you DO…because if I were you, I don’t know if I would.

Via Confessions of an RA Superbitch

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.

be here for me

National Public Radio

Image by Kim Smith via Flickr

I was listening to my local NPR station driving home from my parents’ house the other day. A rerun of the day’s “State of Things” was playing, and as it was the run up to Thanksgiving, they were talking about gratitude. I don’t remember how the panelist got on the subject, but she said something to the effect of this: If you’re helping me because you pity me, go away. But if you want to help me because you see my struggle, you are welcome.

I found that really powerful, like someone vocalised exactly my own thoughts. I’ve read and talked to so many people (not just those of us with chronic illness) who struggle asking for help when we need it. I know I do. I also tend to snap when someone offers  me help when I don’t need it. And I think I may have figured out why (or at least part of the reason why). So much of the time, it seems people offer help because they feel sorry for you or they think you can’t do whatever it is you’re struggling with or some other reason that makes you an object of pity. And just because we’re sick doesn’t mean we can’t see that.

Sure, I can’t open a jar, turn a door knob, sit in a car for long periods of time without pain. I can’t run or wear high heels or even some days button a button. But there is still a lot I can do. And just because I can’t do those things—and I don’t necessarily know at a given time whether I’ll be able to do those things (and others) or not—doesn’t make me useless or helpless or any less of a person.

No one wants to feel like they need help all the time. Or, at least I don’t. And on those occasions I do need help, I don’t want to feel like you’re doing your good deed of the day by opening a jar of spaghetti sauce for me. But if you see I need help, lend a hand and move on, I will notice and I will be grateful. And, to boot, I’ll get to keep a little bit of dignity.

jingle all the way

So, I was inspired by Mariah’s decision to participate in the 2010 Jingle Bell Run/Walk for the Arthritis Foundation. While I may not be the fundraising juggernaut she is, I figured why not throw my hat into the ring, try to raise some money for a great cause and try to walk 5K—which, with how I’ve been feeling lately, will be a feat of itself.

I’ve started my goals pretty modestly—$200 and five people on my team. Well, there’s already me and the Professor, so I’ll at least have someone on my side as I’m walking (limping?) down the road. I’m going to try to get my in-laws and my parents involved, too, and that would bring me up to more than five if they’re all on board.

I know there aren’t walks in every city, but if there’s one near you, get involved! Or feel free to donate some cash to my team. It doesn’t have to be much; really anything at all would be appreciated so very much.

Participating in this run/walk is a big step for me, one that started with this blog. I can’t be the advocate I want to be if I’m hiding the fact that I do have autoimmune diseases and they’re not going anywhere unless people stand up and start making a lot of noise. We all deserve a cure. And I, for one, will not longer leave the work of advocating for that to someone else, someone who is a little more comfortable than I am being out in the open about my psoriasis and about my psoriatic arthritis. Because, really, we and I have nothing to be ashamed of; we didn’t do anything to deserve our illnesses and me hiding behind a facade of healthiness won’t do much to change people’s ideas of what arthritis looks like. Yeah, it’s definitely scary to put myself out there like this, but I think it’s something I have to do.

Here goes.

it’s looking like a limb torn off or altogether taken apart

It’s been a rough … well, I’m not exactly sure how long, but it’s been awhile.

I’m in the kind of slow decline into a flare where each day is just ever-so-slightly worse than the one preceding it. But since the increments are so small that I don’t realise it until I’m thinking back to last week or last month and it hits me that I felt so much better, then.

It hit me this morning when my mum called while I was getting for work. After just saying, “Hi, mum. … I’m doing alright, and you?” she asked if I was sure I was doing OK because I sounded “sad.” Well, dang, Mum, I guess I am a bit sad.

I know I have no real cause for complaint; despite my illnesses, I have a pretty awesome life. I feel like a jerk for adding a “but”—but there is one, after all. I guess it’s just a piling on of little things: a long and exhausting flare, a job I don’t love, medications that don’t work and a host of other insignificant details that, taken together, just feel like too much right now.

I know everyone feels this way at some point and that those of us with chronic illness are perhaps more likely than the average Joe to feel like it never ends, but that doesn’t make it easier to deal with. I know the steps I should be taking to try to make things better. I just need to buck up and get to it.

Today, it feels like that’s easier said than done.

in the eye of the beholder

It’s no secret that I like lipstick; the name of my blog and my header both contain references to that most awesome of pigmented products.

Still, not all lipsticks are created equal. Some have great colour but dry out my lips. Some are moisturizing but have terrible colours or colours that don’t last. Having a lipstick that doesn’t dry out my lips is key; I don’t know if it’s my psoriasis or something else entirely, but when I have a bad psoriasis flare, my lips get all flaky and rough. That means, of course, lipstick doesn’t settle properly.

But, at last, I have found the holy grail of lipsticks: The Body Shop’s Colourglide Lipstick. (Disclosure: The Body Shop has not given me anything for this review. Though I wouldn’t turn it down it if they did!) Oh, and another thing that helps is their Lip Scuff, which feels like a mix of Burt’s Bees chapstick and an exfoliating scrub. Seriously, after one use my lips looked normal again.

But as for the lipstick, I have two colours: a nude (clover pink) and a lovely dark colour (midnight berry). Even though I normally find darker lipsticks really dry out my lips, after a few days’ exclusive use of the berry colour, they feel fantastic. They both wear well (instead of the odd patterns of wear that sometimes accompany lipstick), make me look great and feel amazing on.

It’s just another trick in my arsenal of looking healthy and normal, of not looking like someone with chronic, painful, embarrassing diseases.

Plus, of course, I love The Body Shop’s commitment to social justice: They don’t test on animals and they are huge supporters of the anti-human trafficking movement.

The bottom line: Every other lipstick I have in my collection should beware. The Body Shop’s Colourglide Lipstick is hands-down the best I’ve ever tried.

at least i’m not as sad (as i used to be)

Methotrexate

Methotexate // Image via Wikipedia

It’s kind of perfect that it’s Invisible Illness Week, with the way I’ve been feeling for the last few days. I don’t know if it’s a reaction to the flu shot I got Friday, a flare, side effects from my increased dose of the yellow dart (aka methotrexate) or something else entirely, but this week has not been a good one, disease-wise. I’ve been extra sore, extra exhausted, nauseous (blech) and headache-y, plus the tendons in my left hand — which had been doing OK after a prednisone taper — have decided that they were just kidding about feeling better. Awesome.

(So, I took a break from writing this to paint my nails, and my left hand is so bad, holding the polish brush to paint my right hand left me in tears. I’ll be phoning my rheumatologist in the morning. Geez.)

The point is this: No one around me (with the giant exception of my husband) knows how hard this day was for me. Not my boss, not my co-workers, not any of the people I interviewed today, not my neighbours. No one.

The invisible part of invisible illness is a mixed blessing. The fact that no one knows it’s a Bad Day™ is both a good and bad thing. To the average person, I look like a vibrant, healthy twenty something. And that’s a good thing because, as much as I am all about advocating for those with chronic illness, it’s nice to have the option not to do that all the time (or, at least, when my psoriasis isn’t visibly flaring). But I struggled today. Things that should have been easy were hard: opening a door, holding an empty mug in my left hand, sitting in my chair at work, painting my nails, focusing on conversations. Today, I could have used help. But, other than my husband, no one offered—not even those who know I have a chronic illness. And I think that’s because—and I know everyone out there with an invisible illness has heard this at least once—I don’t look sick.

That makes things hard sometimes. I don’t like asking for help, but that’s on me. Having a chronic illness has forced me to change how I approach things, and I think that’s OK—at least now. I won’t lie: I struggled with that for a long time. But everyone has something they’re dealing with; life isn’t perfect, even for healthy people. And that’s OK, too. I’m not thankful I got sick, but if there is one think I’m thankful it did for me, I’m thankful for that. I’m thankful I can recognize life is hard for everyone and maybe we should all do what we can to make it easier, to make people feel happier (or maybe just less sad) and less alone.

It’s a thought, anyway.

one to one

photo1884

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.

be calm

chickenanger_large

Ah, prednisone, how I haven’t missed you one bit.

The rage that rises out of nowhere and is completely overwhelming — until it’s gone, leaving no trace. The bloating, the insomnia and all of the other super fun side effects — I could live without them. But when my NP heard that my left hand was in so much pain that there were days when I couldn’t use it, days when the wind blowing on it hurt so much it would bring me to tears, she set me up with a quick prednisone taper.

And, it seems to be working. (Well, that and icing it multiple times per day.) Only three days in, and my tendons are no longer strung out like piano wire just before its breaking point. Typing is n longer excruciating. (Hooray!) So, that’s always good. Still, I’ll be glad when I can sleep normally again. Prednisone insomnia + Flexeril sleepiness = a very lethargic me.