Winter on my mind

polar vortexSo, is everyone warm? Are you sipping hot cocoa laced with whiskey? Are you bundled up to your eyebrows? You did get your best, warmest knit cap—yes, that one, the one that makes you look like a demented elf—back out of the hall closet where you chucked it after the last polar vortex?

Believe me, I feel your pain. I feel your pain as I gaze out the living room window at my quiet neighborhood street, watching a girl in a powder-pink parka walk her French bulldog. The parka looks… um… ridiculous. Because this is California. We’re having a drought—Scott Pelley, the anchor on the CBS evening news actually said we were, so it must be true—and we’re in our 48th day of what we so fondly call “the rainy season” but there hasn’t been a drop of rain. The girl in the parka looks ridiculous because, though the calendar says it’s winter, it’s not cold.  Sure, it’s cool early in the morning, like it is right now, but no self-respecting world traveler—such as myself—could call it cold and hold her head up. Why, I remember (she adopts an old crone’s trembly-but-petulant voice) when it was so cold in Germany that ice formed on the cobblestones and stayed for a whole week! We had to dress in so many layers that it took ten minutes to get them all off! A cup of hot gluwein (spiced wine) cooled right down in mere minutes, so you had to drink it fast. Such a hardship! I remember my fingers would get so cold they went numb, and then it hurt like a you-know-what later, when I was back indoors and they started to warm back up.

And here, at this moment on a droughty California morning, a girl is walking in the bright, 61 degree F sunshine  and wearing a parka over her pedal-pushers. It’s enough to make a crone cry.

To all my friends suffering through 34 degrees below zero windchill and shoulder-level snow: my thoughts are with you. I’m worried about you. I know how painful your RA can get when it’s that brutally cold. So I’m mentally sending you visions of California sunshine and warmth and dry, clear streets without ice. I wish you shorts, sandals and sunglasses.

Please stay warm. Please stay safe.

And remember: this, too, shall pass.

Introducing: HealClick!

A new, really unique health website launches this morning!

HealClick is a warm, social, friendly website. It matches patients who have similar medical conditions up with each other. The idea is to make sharing treatment experiences easier, then to use the resulting online data to fuel new medical research.

The founders of HealClick believe their platform will be most beneficial for poorly-understood, frequently-overlapping neuroimmune and autoimmune conditions. These include lupus, rheumatoid arthritis, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia and Lyme disease.

When patients share information about their condition with each other on HealClick, the data goes to medical research.

Patients who share medical details and post content on HealClick agree that other HealClick members can view their information.  Before any data is shared with researchers, HealClick de-identifies it according to HIPAA guidelines. And usernames, pictures, and profiles will never be public.

HealClick’s goal is a patient-driven revolution of personalized research and health. They hope that with a large enough database, they can create new research opportunities and data to help doctors improve early diagnosis and treatment outcomes.

Membership on HealClick is free. There is no advertising, and the site is funded only by the founders and stakeholders who share their vision and aren’t interested in milking patients.

The HealClick story in 2 minutes: http://vimeo.com/80001271

Go ahead! Check it out. Become a member. I did.

An interview with author Lene Andersen

Back in 2009, when I searched the Internet for RA blogs, hoping to discover a community of people who shared this disease with me, The Seated View was one of the first I found.

Lene Anderson, author of "Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side-Effects and Pain."
Lene Anderson, author of “Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side-Effects and Pain.”

I was hooked instantly.

Lene Andersen is natural writer, one of those magical scribblers who can make you feel treasured , cozy and comfortable in just a few sentences. You settle right down to read, and before you know it you’re there with her in Toronto, shaking your head over how her windows freeze shut in the winter, and about how Spring melts the ice and softens the air. You grin at her cat’s goofy antics, share in the joy she feels for her family, marvel at the beautiful photographs she takes and …  well, you catch my drift. Lene makes you feel like a friend.

But she also writes about rheumatoid arthritis, the proverbial elephant in the room.

Lene doesn’t sugarcoat what she writes about her RA—or the facts about RA, period. She writes about it calmly, with open eyes. When she says that starting one of the biologic DMARDs saved her life, she isn’t exaggerating. She means exactly that: the medication saved her life. When she writes about the physical and mental pain RA causes, you get exactly what she’s talking about. Her description fits like a glove.

Lene-Your Life with RA book coverAnd so does her empathy. When I learned that she was writing a book about RA, I was intrigued. When she announced that it had been published, first as an e-book and then later, as a paperback, I was delighted. I bought the Kindle version of “Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side-Effects and Pain” the same day.

And you know what? It’s good. Really good.

I’ll be posting my review of “Your Life with Rheumatoid Arthritis” soon. But first, I’d like to share my recent e-mail interview with its author, Lene Andersen.

Wren: First, a quick bio: Where were you born? When did your family move to Canada?

Lene: I was born in Denmark and lived there for the first almost-20 years of my life. At that time, my father had been working for the Canadian branch of the Danish company for a few years and my parents decided they would like to actually live in the same country (I know… How radical). The whole family moved to Canada for what was supposed to be a year or two. Thirty-one years later, I’m still here.

Wren: Having a disability makes the everyday logistics of attending college and going to school a real challenge. How did you manage it?

Lene: Juggling parallel transit with homework and RA-related fatigue and pain was a real challenge. By the time I went to graduate school, I finally figured out that I didn’t have to do things the same way and on the same time line as everyone else. I did my Masters degree part-time and it was a tremendous help. I had more energy, could focus better on homework and assignments and got better grades.

Wren: What career did you choose? (and “Why?” again…)

Lene: I’ve wanted to be a writer ever since I knew what one was. However, my practical side insisted on a “real” day job. For a long time, my career goal was to help teens with chronic illnesses or disabilities, so I majored in psychology and did my Masters in social work. Halfway through the latter, I discovered policy development and realized that I was much better suited for that. I ended up working in employment equity and human rights and loved every minute of it. That is, until the employment equity law was repealed by a new provincial government and I lost my job.

Wren: What do you do today, work-and-career-wise?

Lene: I’ve come full circle and returned to my lifelong dream of being a writer. I had a huge RA flare in 2004 and came very close to losing my life. Thanks to the Biologics, I got a second chance. You can’t waste a gift like that, so I decided to live more authentically. And that meant being serious about writing.

Wren: Another big challenge: writing a book. How did you do it?

Lene: There’s a wonderful joke that sums it up perfectly:

Q: “how do you eat an elephant?”

A: “one bite at a time.”

Writing a book is very much like that. You show up every day, you write one bit at a time and if you keep doing that, sooner or later, you’ll have a book. It takes discipline and perseverance and being really stubborn about your goal. That will get you in front of the computer during the periods where it’s a mindnumbing slog. Even during the gazillionth rewrite when I’m sick of my own words, there’s nothing else I’d rather do.

Wren: Seems like all of us with RA can name a “worst” experience with the disease. What was yours?

Lene: The 2004 flare. I thought I was going to lose my life, it felt like I had terminal arthritis. I reached a point where I gave myself another six months to find a solution and if I didn’t, it would be okay to kill myself. It wasn’t that I wanted to die, it was because the pain was unbearable. Luckily, I started a biologic and everything got better.

Wren: RA often causes depression. Have you ever been depressed?

Lene: I’ve been depressed on and off for years. Growing up with a chronic illness and disability wasn’t easy. I’ve struggled with finding meaning in it, but didn’t have much luck for a long time.

Wren: How did you recover from depression?

Lene: I’ve seen several counselors in my “career” with RA, starting at age 18. The most helpful approach was cognitive behavioral therapy, because it helped me think differently about my disease and how I live with it. But more than that, it was recovering from my 2004 flare that changed my life. Coming that close to losing everything has given me a different perspective and I haven’t been depressed since. No matter what happens, I have an awareness that nine years ago, I truly believed I wouldn’t be here past the summer of 2005. That puts everything in perspective. I’m living a miracle every day and it’s done wonders for my ability to cope. I also work very hard to focus on what I have, instead of what I don’t have. Practicing gratitude has been key for me.

 Wren: Any suggestions on how people can deal with RA-related depression?

Lene: One of the things I realized when I was seeing my last counselor in the early 2000’s was that sometimes depression is because your disease isn’t well controlled. Although I’m a big fan of counseling, especially cognitive behavioral therapy, there are times when the appropriate expert is not a psychologist, but a rheumatologist. Antidepressants can be an excellent tool to helping you cope better, but so can effective RA medication. If your RA is well-managed, it’s a lot easier to find joy in life.

Mindfulness can also be tremendously useful. Practicing being in the moment makes it easier to see all the things about life that are still wonderful. There’s a profound quote in Mindfulness for Beginners by Jon Kabat-Zinn about living with a chronic or serious illness. He says that as long as you are still alive, “there is more right with you then there is wrong with you.” That’s a terrific bit of perspective.

Wren: Special diets and other alternative “remedies” for RA are as popular today as they ever were. Have you tried any alternative remedies? Did they work?

Lene: I tried acupuncture for the first time when I was 13 and have been a huge fan of it since. For years, acupuncture and shiatsu massage were essential parts of my pain management toolbox. I’ve never adhered to any particular diet. When I was a child, a rheumatologist told me that becoming vegetarian might help my symptoms. I told him that my life was already crappy enough and I had no intention of giving up steak. That said, before I found a medication that worked for me, I did notice that certain foods — tomatoes, fried foods, sugar — exacerbated my symptoms, so I tried to steer clear of them.

Wren: The daily small aches, stiffness and pain of RA can be almost as frustrating as big flares. How do you get through each day with them?

Lene: I take meds on a schedule, which allows me to stay ahead in the race against the pain. I also rest for 1.5-2 hours every afternoon. When I got tired of people telling me how nice it must be to nap every day, I changed the name to Mandatory Rest Period. This emphasizes that it’s an essential part of managing my pain, rather than an indulgence. I’ve also developed really effective mental filters to block out a fair bit of my pain. I think that’s something all of us do. When you live with chronic pain, you learn to ignore it until it really starts interfering with your ability to get things done.

Wren: You’re a vocal advocate for accessible design. Was there any one situation that prompted you to speak out?

Lene: I started using a wheelchair when I was 16 and very quickly became aware of the extra planning and additional steps involved when you travel seated. There was a difference, though, between being aware of barriers and the feeling you get when you experience discrimination. I remember flying somewhere in my early twenties, using a particular airline for the first time. I’d flown several times before, but this was the first time an airline required a letter from my doctor stating it was OK for me to travel. Needing a doctor’s note to go on vacation just because I used a wheelchair was my first experience of discrimination. No one else needed a doctor’s note. Young as I was, I still knew it was wrong that a disabled person had to provide documentation, but someone else with an invisible illness, such as a heart condition, didn’t. Years later, I worked in human rights and became much more familiar with the laws against such treatment. Combining my personal experience with discrimination with my knowledge of legal rights was a very empowering experience.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available as an e-book on Amazon, Barnes & Noble, iBooks and Kobo Books. The paperback is available on Amazon.

For further information, visit the book’s website.

And hey! Don’t miss Lene’s personal blog, “The Seated View. “

There’s tender, and then there’s “tender” …

I have reason today to meditate upon the word “tender.” Usually, I reserve its use to describe grilling chicken breasts to the perfect point of done-ness, when the meat is neither undercooked and still slightly pink, or overcooked so that it’s tough and stringy. “Tender.” Cooked through but still moist and piping hot, firm to the bite but eminently chewable … you catch my drift.

I also frequently see the word used to describe gentle affection, as in “the

I prefer this perception of "tender," personally ...
I prefer this perception of “tender,” personally …

mother gave her little girl a tender kiss.” Lovely. We all get that one.

And then, there’s tender. As in sore. As in … ow. That’s the best way to describe how my hands have been feeling the last few days. They’re … tender. They ache, but it’s a low-level ache, hardly worth noticing most of the time. But then there’s that tenderness… like when I pick up my coffee cup and the joints in my knuckles and fingers feel like they’re being pulled apart, with the accompanying sharp, poking pain. Ow.

Or as when I’m typing, like now. Mostly, it’s not bothering me much (or I wouldn’t be doing it). It’s just that when I stretch my fingers to reach certain keys, I get that mean, pulling sensation again. It takes my breath, forces a frown and then it’s gone.

Tender. As in painful under slight pressure.

I do get weary of the sensation. And, of course, I worry about it. This is happening while I’m taking a big handful of DMARDs (disease modifying anti-rheumatic drugs) every morning and every night. It’s happening even though I’m taking Tramadol every six hours, rarely missing a dose. It’s happening in spite of the odd Vicodin here and there, when tender turns into “holy s**t that hurts!”

And despite all the medications, anti-rheumatic, pain-killing, etc., my knuckles are still swollen. Day and night, every day.

In a few days I’m going to the lab for my quarterly blood tests. I’m really curious to see how the sedimentation rate, which measures the level of inflammation in the body, looks. It was somewhat higher (for the first time in a couple of years) last quarter. I’ll be floored if it’s not higher still, this time.

But I’ve been disappointed surprised before. Perversely, sometimes lab tests simply don’t reflect perceived pain levels or actual disease activity. I guess that’s why “healing” when applied to medicine, is an “art.”

Hmm. Two more words to meditate upon …