I recently discovered a relatively new psoriasis blog, “Me With Psoriasis.” The author was recently diagnosed with psoriasis and keratitis and is super open about the impacts on her. It’s a great read, and I’ve definitely added it to my blog list. Enjoy!
I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.
Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).
But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.
Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.
But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.
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!
In the world of patient bloggers, there’s a lot of talk about what’s fair. And I get, really. It’s not fair that we should have to deal with these diseases. It’s not fair that we should be in pain and exhausted and fight to remember words. It’s not fair that our loved ones should have to watch us struggle to do ordinary tasks. It’s not. I know.
I have days when I strive—and sometimes fail—to accept that. I have days when I just want to stand in the middle of a room, stomp my feet and shout, “But it’s not fair!” Or maybe, “Why me?” Still, usually before long, I see the humour in that image and shake it off.
And honestly, to answer my
whiny unhelpful question with another question, “Why not me?” If not me, then who? I don’t know if it’s just who I am or if the PsA and psoriasis had a hand in making me this way, but I feel like I’m a pretty strong person. Most of the time, I’d say I cope with this just fine. If not me, then maybe the person who would have gotten this in my stead wouldn’t be able to deal with it, wouldn’t have an amazing husband, great doctors, awesome friends and a boss that understands—or at least tries to.
I guess the irony in my life is that I’ve got it pretty good, even with dealing with a chronic, life-altering disease. So, maybe, instead of asking, Why me? all the time, I should do better at appreciating what I’ve got. (But don’t get me wrong—I reserve the right to have a pity party every now and then! It’s part of the membership perks of being a Chronic Babe.)
Is it Saturday, yet?
This weekend will be the first one in awhile that I haven’t had to work. Conveniently, my mum also doesn’t have to work Saturday, so she’s venturing out my way and we’re going to get some mani/pedis. Normally, I do my own nails every week (right now, they’re OPI’s Who The Shrek Are You? And, yes, they are Shrek-coloured), but it will be nice to let someone do them for me.
Doing something for myself is so important, even though I’m feeling more like my old self. I find it really easy to go not be so hard on myself when I’m feeling down or exhausted or in the midst of a flare. It’s so much harder to cut myself the same slack when I’m doing ok. But thanks to an awesome Christmas present from my dad (thank goodness for Spa Finder gift certificates), I can make sure I do just that.
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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).
- 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.
- 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.
- 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.
- Neutrogena Healthy Skin Blends Sheer Highlighting Blush. It’s soft, fresh and it stay put. ‘Nuff said.
- 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.
- 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).
- 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.
The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren’t related to. Too much eating can lead to weight gain or eating food triggers or stuff you wouldn’t normally touch. All of it can mean pushing yourself passed your limits. It can be a disaster.
There are some things that I’ve learned through 13 years of having a chronic illness. A lot of the same things that apply during the rest of the years help during the holidays. Limit your stress as much as possible. I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. But keeping everything in perspective is essential. Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.
Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. The way I (try to) prevent overeating is I only allow myself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.
But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on Last.fm and sipping on hot apple cider or (soy) egg nog.
The always wonderful Maya of Loving with Chronic Illness has posted a plea for help on her blog. Her boyfriend’s two sisters have Friedreich’s Ataxia, and his mother is participating in Ride Ataxia Philadelphia, a bike ride to raise money for and awareness about the disease. I know times are tight with everyone, but head over and read her post. We Chronic Babes have to stick together, right?
Here’s an excerpt from her boyfriend’s mum’s letter to friends and family, taken from Maya’s site:
I remember at Sara’s diagnosis in 1996 when the doctor said that potential cures would be the year 2000 or beyond; that seemed like a lifetime. Well, never in my wildest dreams did I think that in 2010, I would still be waiting. Little did I understand what it takes to cure a disease.
On September 26, Sara and I are travelling to Philadelphia to the Children’s Hospital to begin a drug trial that will last a couple of months with 5 separate trips to Philly. This is one of several studies that are underway or will be underway in the months to come. Both Sara and Laura will participate in another study here in Rochester next Spring. Finally, a little hope has arrived at our door. Our years of fund raising and contributing have meant something.
I am somewhat behind on this, but the 12th Chronic Babe blog carnival is up for your browsing pleasure. The topic this time was health care reform and our thoughts on it.
Here are some of my favourite responses:
- Kerri at Six Until Me writes about the hope she has that this bill will be a good thing for those with diabetes and other chronic illnesses, that we won’t have to let fear of lapsing insurance coverage rule our lives.
- Diana Lee at Somebody Heal Me writes about the effect of health care reform on those with mental illness.
There are a ton of other great posts over there, so get to reading!
It’s strange to think that health care reform was passed six months ago. Six months ago, there was a lot of hard-to-stomach rhetoric floating around: baby killers, death panels for the elderly and health as a commodity. But, as so many have said — and those with chronic illness know too well — it’s the healthy who have the luxury of seeing insurance that works when you need it as something to be taken for granted.
This health care reform bill is not perfect. It’s not universal coverage. For me, it doesn’t go anywhere near far enough. The provision that will actually help me — relief for those of us with those pesky pre-existing conditions — doesn’t go into effect until 2014. The government is, of course, toting all that happens now, all those who are helped now or who will be helped soon. But, really, I was and continue to be pretty disappointed in the so-called “reform.” Nothing substantial has changed. Sure, I’m glad that in four years, I would have to worry as much about losing my insurance and not being able to get that back.
I know there’s no such thing as a free lunch. I am willing to pay for my health care. But I don’t think it’s right that people should have to choose between eating and taking the medications. I don’t think it’s right that people should have to stop taking drugs that help them because they can’t afford the co-pay. I don’t think the insurance companies should have been the big winner in health care reform, with millions of mandated customers coming their way because of these changes.
There’s a lot more that could have been done if the powers that be really wanted to help the uninsured, the under-insured, those of us with pre-existing conditions. And they didn’t. Maybe in the future Congress will man up and do a proper job of it. But for now, I am not impressed.