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.

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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.)

mindfulness

An interesting article (and now old) from The New York Times describes how the doctor-patient relationship has been changed because of the increasing intrusions into a doctor’s day and increasing demands on her time.

All of us had had the experience of “disappearing” into the meditative world of a procedure and re-emerging not exhausted, but refreshed. The ritual ablutions by the scrub sink washed away the bacteria clinging to our skin and the endless paperwork threatening to choke our enthusiasm. A single rhythmic cardiac monitor replaced the relentless calls of our beepers; and nothing would matter during the long operations except the patient under our knife.

We had entered “the zone.” We were focused on nothing else but our patients and that moment.

But my more recent conversations with surgical colleagues and physicians from other specialties have had a distinctly different timbre. While we continue to deal with many of the same pressures that my mentor dealt with — decreasing autonomy, increasing administrative requirements, less control over our practice environment — the demands on our attention have gone, well, viral.
Extreme multitasking has invaded the patient-doctor relationship.

It is painfully obvious when a doctor has checked out and no longer cares about the individual patient or the patient as an individual. I’ve experienced it myself — to disastrous results.

But the article made me think a little; I know kicking that man, a doctor who didn’t treat me as singular, who was clearly used to either treating patients who didn’t question or were much older than I am and thus needed different kinds of treatments, to the curb was the best thing for me, but doctors certainly need to think about being mindful, taking joy in their profession and seeking to help their patients.

Of course, patients need to take some responsibility, too. Constantly e-mailing or phoning doctors for things that reading the drug pamphlet provided by the pharmacist could answer or unnecessarily taking up doctors’ time (notice I said unnecessarily) adds to the burnout that causes doctors to withdraw. I think sometimes we too often think of doctors as adversaries or as their job, instead of realising they are people too. I think more mindful doctors — and patients — would lead to better relationships and overall better care.

Food for thought, I guess, about doctors, who really are a lifeline for their chronically-ill patients.

the bends

I’ve started doing yoga recently.

I am not very good at it.

I’m not flexible (the forward bends Rodney Yee expects me to do are just out of my league, at the moment) and apparently I don’t have much balance either.

Even so, I adore yoga. I wish I had time to do his “A.M. Yoga” before I went to work and some more intense yoga in the evening, as a workout. But I don’t. So, for now, I’m alternating them; or, if I have a particularly stressful day ahead of me, I’ll go with “A.M. Yoga” because I am super relaxed afterward.

Still, relaxing and being fit (read: toning up/losing weight) aren’t the only reasons I’m doing this; like nearly everything else, it seems, I’m hoping yoga will help me get a handle on my PSA. Since I’m about ready to add Enbrel to the long list of biologics that started and then stopped working for me (see: Humira [twice], Remicade, Orencia, Enbrel [twice]), I’m desperate to find something, anything that will help.

If I keep up with it — yoga, that is — it should help; it will make my muscles stronger, taking tension off of sore and inflamed joints. But most of all, I’m hoping that sense of calm and strength will power me through the days when I’m feeling helpless, when nothing seems like it’s working, when the pain makes me snappy and quick-tempered. And that hope keeps me going, propels me out of bed on days where I’m so tired I just want to fall back into bed, crawl under the sheets and sleep for a hundred years.

(Picture via WeHeartIt.)

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?

alive and kickin’

The newest ChronicBabe Blog Carnival on parenting is up and running!

I’m really enjoying the posts so far. Laurie Edwards of A Chronic Dose, of course, wrote a really lovely, “As Long As It’s Healthy.” But, then again, I always love her stuff (including her book!); she was actually the one who inspired me to start blogging about my health issues.

Annie’s post on It’s Time To Get Over How Fragile You Are is also really awesome. She talks about trying to figure out whether she wants a child and how it’s complicated by having a chronic illness.

There are a bunch of other great ones, so head on over and enjoy!

new normal

Forgive  me if I’m not super eloquent today, but some kind of Something Nasty is kicking my butt, alternately plugging up my nose and making it run like Niagara Falls. I feel like someone’s replaced my brain with cottage cheese or maybe a nice down pillow.

But I thought this column in the New York Times was too good to ignore. Loren writes about how, even though she is currently in remission, her UC never really goes away. It dogs her, like a shadow, sometimes barely visible but always there.

While in remission, it’s easy to convince yourself that illness was just a bad dream, a nightmare, and that this healthy, robust you is the real you. It’s easy to forget (but not really forget, just ignore) all the things that you have to deal with: side effects to drugs, friends and family not really getting it, the knowledge that you live with an incurable disease.

It’s hard. I know it’s something I struggle with every day, even though I’m not in remission and wake up every day hit full force by the effects of PSA. Sometimes a chronic illness hits you in places where you didn’t even know you were vulnerable, like Loren at her company’s blood drive (don’t even get me started on company blood drives and those stickers).

How do you cushion the blow? I don’t know. But if any of you figure it out, please feel free to let me know.

Laughter — really the best meds?

Is laughter really the best medicine?

Now, I know that’s not really this week’s Patients for a Moment question (that was about a funny moment in my illness).

But I think the idea that laughter can help a person get through an illness is really powerful. I don’t know that I’m at a point where I can laugh at my PSA yet — hell, I can barely talk about it without tearing up. But laughing, even just for a little while — maybe while watching “Scrubs” or “The Office” or having some crazy conversation with my husband or friends — it makes everything seem somehow less dire, more manageable.

It makes me feel like maybe I could laugh at this one day.

Oh sure, there have been some funny moments, I guess. Like when I first started using injectable biologics and would bargain with myself or trick myself into thinking that I was not about to stick a needle in me. “This time it won’t hurt, Self,” I would say. “Wuss.” (I’m a big liar.)

Mostly, I am just glad I still can laugh, even if not at myself just yet. I can laugh when I’m singing silly songs in the car. I can laugh with my husband, when we make ridiculous faces at each other. I can laugh at the poem a good friend wrote me. (I’m not being mean; it’s meant to be funny!) I can laugh at TV shows, movies and musicals. I can laugh at political candidates responses to our questions on Election Day (“I’m making a sandwich” still wins, hands-down, as a response to, “How did you spend your Election Night?”).

So, laughter is the best medicine? Yeah, I think I’ll have a double dose.