at the carnival

So, the most recent editions of both Patients for a Moment and the Chronic Babe Blog Carnival are up. Here are some of my favourite posts from the both of them.

For PFAM, the question was, “What keeps you going?” For the Chronic Babe carnival, it was, “How do you deal with the medical establishment?”

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doctors are people, too!

I went to the pharmacy today, hoping to ask a question about the yellow dart (a.k.a. methotrexate) (whether I can use a vial of preservative-free MTX multiple times — unfortunately, I’ve gotten conflicting information on this, which is super awesome). But apparently, the pharmacist decided she’d rather talk to the people paying for a Snickers bar about starting up a swimming program for 10 minutes. (I wish I was kidding.) You’d think with how many doctors, nurse practitioners, pharmacists and other medical professionals I see and have seen, I would have known what to do. Instead, I decided to leave and phone a (different) pharmacist later.

Still, there are ways to deal with the incredible number of medical personnel we encounter with ever-increasing frequency, it seems. I think the most important thing to remember is that they are human. Doctors, nurses, pharmacists, the woman who runs the front desk at the doctor’s office: All of them are people, too. They all have bad days and good days. “Please” and “thank you” work wonders. It seems really simple, but I think remembering that is really helpful. Being polite never hurts, and I think we’ve all seen how well yelling and screaming at people works at getting them to be willing to go the extra mile for you. (Read: Not very well.)

Sometimes, it’s hard for me to remember that, even though I live this every day, the doctors and nurses and all the others are doing their jobs. I think it’s good to remember that it’s up to me to help them to understand how bad I’m feeling or what symptoms or side effects are bothering me at the time.

So, really, my big secret for getting what I want from my doctor — or having a relationship where I can lay that out — is no secret at all. In fact, I’m pretty sure we all learned it in kindergarten: Treat people as you want to be treated.

(Photo via We Heart It.)

breakdown, go ahead and give it to me

The newest edition of the Chronic Babe blog carnival is up! Here are some of my favourites:

Enjoy!

nothing feels good being under the gun

“Well, crap.”

When everything goes to hell, that is usually the first thing my inner monologue can come up with. Helpful, right? (Not, not really.)

But when everything starts tanking, I usually retreat to one of two responses: Curse a lot, feel overwhelmed, whine, cry, complain, et cetera or step into a pencil skirt and a sassy top, put on my biggest statement necklace, curl my hair, pop on some red lipstick and a pair of fierce high heels, put on my best “Mean Girls” stare and, hand on hip, cut that beyotch down to size.

When I start feeling overwhelmed, it helps me to at least look put together. When my life seems to be spinning out of control, when work deadlines pile on top of housework and the dog decides to eat something that doesn’t agree with him and so has it shooting out both ends, when I’m flaring, it seems the only thing I can control is my appearance, the face I present to the world. And so that face seems so much more important than it does when I’m feeling well (or well-ish).

Subsequently, if I look like I’ve got it all together, I start feeling like I do, too. And then that mountain I feel like I’ve got to conquer starts looking more like a pile of beans.

But the thing I’ve found helps me best is to be really organized. This is not, unfortunately, my nature, but I’ve learned I function best when I write everything down (especially when the brain fog starts rolling in) and when everything has a place. It took me a long time to organize my office (cubicle) the way I  need it to be; now that it is, though, it helps when I feel like everything is crashing down around me.

Of course, sometimes I still need a good cry or a good yell or a good cuddle or to just sit in my pajamas the whole day eating frozen yogurt and crossing absolutely nothing off my to-do list. The thing is, most of the time, I just don’t have the energy to start freaking out over whatever this week’s big crisis is. Most of the time, I put my head down and muddle through. But every now and then, with all those plates up in the air, one of them will fall. If you’re lucky, someone else will be there to catch it before it hits the ground. If not, you’ve just got to dust yourself off and try again. (And maybe invest is some Corelle dishware, next time.)

(PS- I took that photo when I was at university, after a hurricane blew through. I had never had school canceled because of rain before. Snow, yes. Rain, no. I can’t say that anymore.)

here’s to you

The most  recent Chronic Babe blog carnival, on advice to newly diagnosed Babes, is up. Here are some of my favourite posts:

So, head on over and read! There are a ton of great posts.

an open letter to you

To you, the newly diagnosed or newly symptomatic or newly accepting:

Take a deep breath.

So, you’ve recently been diagnosed with a chronic illness or, maybe, you’ve started to get weird symptoms — you’re tired all the time, you hurt, you feel like your body has betrayed you — but whatever it is, you’ve become a member of a club no one would willingly join: You’ve got a chronic, maybe invisible, illness. You didn’t ask for it and certainly don’t deserve it, but, for whatever reason, you got it. And it sucks, I know. Trust me: I know.

I think the first and most important thing is it is OK to grieve. Of course, it is. Hell, it’s necessary. This illness, whatever it is you have, if it hasn’t taken anything from you yet, it will. It’s critical to mourn that part of your life, the part when you didn’t have to worry about side effects and drug interactions, letting down friends and family, people who don’t understand and the spoon theory. Mourn your health, the changes its loss will bring and the choices you never thought you’d have to make.

For too long, I did not partake of this crucial step. I thought by the force of my will I could make my recalcitrant joints and that bully, my immune system, obey. I would power through, not give myself the breaks I didn’t think I needed, ignore the consequences. I hope it doesn’t take you five years to come to grips with your new reality. I think I’m still in mourning for that lost girl, but at least I’m no longer stuck at denial. Please, take the time to grieve.

Now, something almost as important as mourning: Find yourself a great doctor/nurse practitioner who listens to you and doesn’t belittle your symptoms. I have had one amazing rheumatologist, one fabulous nurse practitioner and one horrid doctor. I stayed with the bad one far too long, as he wasted time on things that didn’t work, prescribed me drugs I did not want to take and ignored my phone calls and my symptoms. If you don’t click with your doctor, move on. Life with illness is hard enough; your doctor should be in your corner. If he or she isn’t, find someone who is.

But, even with a great doctor, it may take awhile to find something that works for you. Try not to get discouraged. There are a lot of drugs out there, and it often takes some creativity and blind luck to figure out what will give you relief. In the meantime, don’t settle. The goal should be remission. You may not get there, but it’s something to strive for.

Now, explaining to friends and family, bosses and co-workers about your illness is difficult. Being sick 365 days per year is something healthy people can’t really understand. Some won’t even try. That hurts; I know it does. People you thought you could count on may work their way out of your life. It’s OK to decry the loss, but it’s better to just let them go. Some will come back; some won’t. Celebrate the ones who remain, who want to stick with you through thick and thin. But remember: This is hard on them, too. Sometimes it will seem like your loved ones aren’t giving you the support you need. It may just be that they are burnt out or maybe they feel helpless. It has to be hard, to watch a friend, partner, spouse, sibling, son, daughter be sick and in pain. People sometimes forget that the ones closest to us carry a heavy burden, too. Appreciate the ones who help you, but let them know they too need to take care of themselves.

And when the people in your life can’t or won’t support you, there are so many of us out in the world that are ready and willing to commiserate, offer advice or just listen. Even though it may seem like it sometimes, you are not alone.

(Image via We Heart It.)

ChronicBabe blog carnivale no. 6

I am really digging the submissions to the ChronicBabe blog carnival on passion.

  • Selena over at Oh My Aches and Pains writes about how having a chronic illness can make you feel like you have to put your life on hold, so you can properly deal with it and get some answers from someone, anyone. But, without passion, how can you be sure to have fun every day?
  • Migrainista writes about a passion thief who blocks her access to the things she loves. A beautifully written and lovely piece.

So, what are you passionate about?

lighten up! it’s just passion

Passion.

via We Heart It

There are a lot of things I could write about with that. I could talk about the Hubs or writing or church or any number of things. But, really, when I think of passion, one person comes to mind: my best friend Ree.

For as long as I have known her — since high school — Ree has been so full of life and passion for everything and everyone. She had big ideas and big plans to save the world — or at least her corner of it.

I remember one day I told her I admired her so much for her passion; it meant so much  to her, she tattooed the word onto her chest. Like I said, the woman’s got passion.

And I still admire her for it. She has the drive to really make a difference in people’s lives, and she’s certainly made a difference in mine. I know a lot of my own spark, my own passion comes from her. Sure, the direction of this passionate — the nexus of my desire to write and the inability to remain silent any longer about my illness — are of my own making. But she, even if she doesn’t know it, is the push that got me started, the one that let me know it’s OK to be vulnerable sometimes.

So, no matter what she’s doing, I know she’s living her life with vigor and endurance and love. And as much as I wish we lived in the same town or state or region, knowing she’s out there making a difference somehow makes the distance OK.

So, here’s to Ree.

Passion, it lies in all of us, sleeping… waiting… and though unwanted… unbidden… it will stir… open its jaws and howl. It speaks to us… guides us… passion rules us all, and we obey. What other choice do we have? Passion is the source of our finest moments. The joy of love… the clarity of hatred… and the ecstasy of grief. It hurts sometimes more than we can bear. If we could live without passion maybe we’d know some kind of peace… but we would be hollow… Empty rooms shuttered and dank. Without passion we’d be truly dead. — Joss Whedon. (via Think Exist)

fake it until you make it

I know for this ChronicBabe blog carnival we’re supposed to write about our tips and techniques for taking care of ourselves. I could write about hot water bottles or bags of frozen peas, drugs that help or meditation techniques that make me feel better. But I’m not going to do that.

For me, the most important part of taking care of myself goes beyond flares and remission, beyond migraines and PSA. For me, the most important thing is simply this: What can I do to make myself feel more like the me of old, the healthy me, the me that didn’t worry about self-care tips and tools?

And that’s a mite trickier. (At least, for me it is.)

I don’t know about anyone else, and I’m certainly not trying to be a mouthpiece for all patients — or even all of us out there with PSA — but I struggle to find a balance between the me-that-was and the woman that’s here now. I’m not even sure if striving to stay true to that girl is healthy or even feasible, but at this point in my life, it’s something I need to at least try to do.

So. How do I do it?

The makeup I have on me at work.

First things first. I am all about makeup tricks that make me look like I’ve got a healthy glow, instead of a pale, bags-under-eyes whatever the opposite of glow is. Un-glow, maybe. For that, my friends, I need makeup and skin products. Not a ton, mind you, but some are certainly needed to mask lack of sleep or a face taunt with pain. But before you can put makeup on, you must start with a clean face. In the morning, that means two Aveeno products: the Positively Radiant morning scrub and the Positively Radiant moisturizer with SPF 30 in it. I don’t compromise on the SPF. It helps my face look brighter because it’s got some kind of light-reflecting pearls in it. I don’t know really how it works, but it does, so I don’t ask questions. On days when I’ve got puffy bags under my eyes, I’m a fan of the Aveeno Positively Radiant. But, when my dark circles are so bad that they’ve got to be concealed, I use MAC’s Fast Response Eye Cream, which is a great base for under-eye makeup, but not so much for de-puffing the eye area. To conceal, I’m a big fan of the Physician’s Formula concealers, for under the eye and for the odd pimple I get.

So. Not looking tired anymore? Check.

Now, for the rest, I love to use the makeup I used before I got sick. I’m a fan of MAC, L’Oreal HIP and some Revlon eye makeup. You’ve got to use what works for you. But, to look really awake, I curl my lashes and apply one coat of mascara. I already have long lashes, so I use a volumizing formula, like L’Oreal’s Volume Naturale, or Cover Girl’s Eye Lights in Ruby Negro (since I have green eyes).

I don’t use foundation because my skin’s pretty good. When I did, I liked Neutrogena’s tinted moisturizer; it looks like your skin, but better. I’m also a huge fan of Neutrogena’s Healthy Skin Blends for blush or NARS blush in Orgasm, which looks good on pretty much everyone. For lips, I go back and forth between a few different lipsticks. I use Jemma Kid’s nude lipstick, but it’s a bit drying, so I put on some Rosebud Salve underneath. I have a MAC cream lipstick in a red/magenta colour to use when I want some drama. I also love Maybelline’s Color Sensational Lipcolor (I have three!). It’s really hydrating, so I don’t need to worry about lip balm underneath.

Now, for hair. On bad days, days when I’m not up to blow drying or running a flat iron through my hair, I use John Frieda’s curl collection and air dry my hair. Once it’s dry, I just put a bit of anti-frizz cream on it and I’m good to go. And I don’t know about the rest of you PSA ladies, but my skin is super dry. I love Nivea’s body lotions; they are amazing and keep my skin super soft.

And that’s it. It just takes 20 or so products to keep me looking like I did before I got sick. But, when I look better, I feel better, so that’s really important to me. What tips and tricks do you all use to keep the world from knowing just how bad you’re feeling?