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.

A haiku about my lunch

Image via Flickr.

Here’s to my delicious lunch. The Hubs and I (though, really, it was just the Hubs; I was feeling terrible yesterday. It was such a Bad Day that I relented finally and took some of the Percocet my NP prescribed me.) made a delicious meal; we got some turkey — which we had never made before — and made sweet potato and butternut squash mashed potatoes, roasted vegetables, fresh bread and cranberry sauce. Yum.

Turkey. Cranberry.
Sweet potato. Delicious.
Thanksgiving in June.

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.)

here, right here

So, Annie over at It’s Time To Get Over How Fragile You Are has challenged her readers to find 25 words to describe at this exact moment. Well, Annie, I accept. So, here goes:

  1. Tired
  2. Sore
  3. Expectant
  4. Loved
  5. Unpredictable
  6. Melancholy
  7. Determined
  8. Stubborn
  9. A writer
  10. Reader
  11. Indie
  12. Fashion-loving
  13. Strong
  14. Soft
  15. Loyal
  16. Proud
  17. Numb
  18. Advocate
  19. Optimistic
  20. Pessimistic
  21. A friend
  22. Classy
  23. Sassy
  24. Sarcastic
  25. Generous

What about you? How would you describe yourself?

(Photo via my husband.)

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.

Changing Perspectives in Russia (via Opening Our Eyes)

This post in particular — and this blog in general — are amazing. I’m slowly working my way through the archives and just reveling in the compelling stories this mother-daughter team tells. The one today about Yulia Simonova, a woman in a wheelchair in Russia, and her fight for inclusion in a county that cares more about the masses than the individual, really hit home. I don’t consider myself disabled, but even in a country that values the individual, it’s still hard to be different. I can only imagine what it’s like for Yulia, who had to be home-schooled because schools in Russian weren’t handicap-accessible when she was a child.

So, enjoy and be thankful; I know I did and am.

Changing Perspectives in Russia One of the first things we noticed after arriving in Moscow was the poor quality of services for pedestrians. Sidewalks are bumpy with very high curbs, there are no elevators in the metro stations, and if you’re lucky enough to find a ramp, it’s extremely narrow, steep and slippery (we could barely roll our luggage up the one at the high-end Hilton Hotel). These are the kinds of obstacles that Yulia Simonova and other disabled people face everyda … Read More

via Opening Our Eyes

i want, i need

Inspired by Abigail, I decided to enter my name and the word “needs” into Google and see what pops up. Here are the top 10 things I need:

  1. a hug.
  2. new glasses.
  3. an explanation.
  4. to complete her journey.
  5. a new home.
  6. her family.
  7. water to survive.
  8. a scarf.
  9. to wipe that smile off her face.
  10. to go back to the Loch.

That made me smile.

(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?

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)