epic oops

So, I had a bit of a problem last night. I decided to give myself my methotrexate injection in my tummy, to give my thighs a rest from the dual weekly injections.
And as I was getting to the halfway point with actually pushing it in, some squirted out around where the needle comes off an splattered all over my shirt, making it look like I peed on myself in some highly unlikely and acrobatic manner.
Here’s to the unintentional hilarity that comes with chronic illness.

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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]

‘we must be as pure as the ends we seek’

3. Martin Luther King, Jr., a civil rights act...

Image via Wikipedia

Today is Martin Luther King Jr. Day. For many, it was just another day off. Not for me—journalists don’t get days off for many holidays.

But I took the time today to read King’s “Letter from a Birmingham Jail,” and it was as eloquent and moving today as it was the day it was written. If you want to join me in reading it to commemorate King’s life, it’s here.

I must make two honest confessions to you, my Christian and Jewish brothers. First, I must confess that over the past few years I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro’s great stumbling block in his stride toward freedom is not the White Citizen’s Counciler or the Ku Klux Klanner, but the white moderate, who is more devoted to “order” than to justice; who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice; who constantly says: “I agree with you in the goal you seek, but I cannot agree with your methods of direct action”; who paternalistically believes he can set the timetable for another man’s freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a “more convenient season.” Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is much more bewildering than outright rejection.

I had hoped that the white moderate would understand that law and order exist for the purpose of establishing justice and that when they fail in this purpose they become the dangerously structured dams that block the flow of social progress. I had hoped that the white moderate would understand that the present tension in the South is a necessary phase of the transition from an obnoxious negative peace, in which the Negro passively accepted his unjust plight, to a substantive and positive peace, in which all men will respect the dignity and worth of human personality. Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.

and doctor up this disease

On Monday, I discovered just how essential Enbrel is to my well-being.

Despite the fact that my mail order pharmacy has had the prescription for about two or three weeks now, they still haven’t gotten my order straight, and I’m still not set up for home delivery of it yet. That presented a problem Monday, when I missed a dose. Actually, my body thought I missed it Sunday, since I’d had to take my shot a day early the week before, while we were traveling. After being without it for one day—one measly day—I could feel my pain coming back. But, I thought it was no big deal; surely, I thought, the pre-authorization needed to get Enbrel had gone through my insurance company by then. I would just call up, get them to authorize the one-time courtesy refill I’m always hearing so much about and I would be OK until the mail order pharmacy thing got straightened out.

Wrong.

The reason the mail order pharmacy hadn’t contacted me for delivery was that they hadn’t received the pre-authorization from my insurance company. There was no real reason for that as far as I can tell when I phoned the insurance company to find out what the frig was going on. It’s just taking awhile, they said.

Well, that’s all well and good, but I needed my shot. I won’t lie: I was terrified Monday night, terrified of the idea of going back to how I felt a month ago. I didn’t want to go back to being in constant pain, so exhausted that I was pretty useless to everyone around me. I lay in bed crying that night, begging God to give me the strength to get through this. I can remember only a couple of other times I was as scared.

Luckily, my rheumatology team is incredible. My NP let me have three additional samples—that’s on top of the three she’d already given me—and the Professor picked them up from me, since he was still on winter break from school. I took it, and all was well again.

But it was a brutal reminder that even though I’m feeling better—well enough, in fact, that I wore heels twice this week—my psoriatic arthritis isn’t gone; it’s just hibernating. Eventually, one or more of the drugs will stop working, and I need to come to terms with that (again). I am grateful for the time I have feeling well or even better than bad. And I am strong enough to get through the times when I feel terrible (again).

chronically a babe

Before I got diagnosed with psoriatic arthritis, I had a vision of what a chronically ill person looked like, though I’m not really sure where it came from. Think dingy grey robe, sad pink fuzzy slippers and terrible, slumping posture. Of course, I know now that’s not (necessarily) what chronic illness looks like, but I still think that image of perpetual illness persists for a lot of people. Maybe that’s why it’s so important to me (and I’m not alone, clearly) to keep the babe in chronic.

Even the BBC’s Newshour took a stab at this via New Year’s Resolutions (chapter 9 is where it starts), the idea that the outside really matters.

[You might say,] ‘Oh, I don’t know if I’ve got the energy or the self-belief to really make that leap.’ That’s where I think making a few personal changes, like to the way you look, perhaps, can really kind of just give you a little bit of that instant boost and give you that extra energy you need to tackle the bigger issues head-on. If you can start there, then I think it’s much easier to make those fundamental changes going forward.

And I really think that’s true. I know a month or so ago, when I was in the grips of that awful flare, it was really hard to care about how I looked; it was hard to make that extra effort—to use those extra spoons—to put on some lipstick, do more than just comb my hair and really think about the clothes I was going to put on my body. But on those days I didn’t do all those things, I actually felt worse.

And that makes sense; looking at myself with flat, limp hair and no make-up just reminded me of how crappy I’d been feeling. (Not that I needed a reminder!) So now that I’m feeling relatively good, I’m working to get down my favourite products, tips and tricks to being not just a Chronic Babe but a babe, regardless of health status. And, in the tradition of the fashion blogger, here are a few of my must-haves to get me on my way to babe-dom.

hair.

  1. Giovanni Tea Tree Triple Treat Shampoo and Conditioner. This shampoo and conditioner duo are great (and cruelty free; they don’t test on animals and don’t use animal by-products in their shampoos and conditioners). My hair feels silky, clean and light after I use them, and the rosemary, tea tree oil and eucalyptus help take the itch out of my psoriasis and cut down on the flaking.
  2. The Body Shop Rainforest Moisture Shampoo and Conditioner. Since my hair gets used to products pretty quickly, I alternate brands so I can use them longer. This shampoo and conditioner (again, cruelty free) make my hair soft and manageable but not greasy, unlike some moisturizing products can do sometimes.
  3. V05 Hot Oil.  Love this stuff. I used it all the time as a teenager, but fell out of the habit when I moved back to Canada for university. Now that I’ve rediscovered it, I used it once a week to help protect my hair from styling damage done by blow-drying and flat-ironing my hair.
  4. John Frieda Luminous Color Glaze.  I use the clear glaze once per week and it makes my hair super shiny, like I spent a ton of money on it.
  5. The Body Shop Macadamia Straightening Balm. This is a must-have part of my cold weather hair routine. In the summer, I often wear my hair wavy, since that’s wash and wear, but in the winter, I don’t want to leave home with wet hair. This stuff lets me have straight hair with volume. And it smells delicious.
  6. Kusco-Murphy Bedroom Hair. I use this as a finishing balm after I’m done straightening my hair (or for hold and frizz control when I leave it wavy).

body.

  1. The Body Shop Body Butter. Right now, I’m using up the rest of my (discontinued, sigh) Black Velvet Apricot. Once I’m done, I’ll be heading back to Moringa. Just a little bit of this body butter and I’m good and moisturized for a day or two.
  2. Aveeno Positively Nourishing Smoothing Body Wash. While I love this stuff, I’m going to have to stop using it for one reason: It’s hard to get the body wash out of the body and into my hand. I have to squeeze unreasonable hard to get any to come out, and that’s just too hard on my hands.

face.

  1. Aveeno Positively Radiant everything. I use the daily scrub and the cleanser in the morning before slathering on the facial mositurizer with SPF 30 (a must for someone with fair skin who also happens to be on MTX). At night, I use the makeup removing cleanser, which does a good job of getting even the most stubborn eye makeup off my face.
  2. Neutrogena Healthy Skin Blends Sheer Highlighting Blush. It’s soft, fresh and it stay put. ‘Nuff said.
  3. Maybelline Eye Studio Lasting Drama Gel Eyeliner in Plum. I love this stuff, and I normally hate applying liquid/gel/pencil eyeliner. It’s easy to get a nice thin or thick line that looks straight and stays on all dang day.
  4. The Body Shop Eye Shadow Palette. This one has a couple shimmery purples and corresponding highlights that I just love. It’s easy to apply and stays on all day. And—a bonus—it doesn’t burn the way some commercial eye shadows do (or maybe that’s just me).
  5. The Body Shop Colourglide Lipstick. A lipstick that’s actually good for your lips. Sign me up.

Now, of course, I’m still a babe whether I’m all decked out or at home in my sweats, but it certainly doesn’t hurt to look good. And really, it boils down to this: When I look good, I feel good. That’s the most important thing.