Being Creative

 

I’ve wanted to create my own artwork for RheumaBlog’s banner for a long time, now, but I just couldn’t seem to translate the vision in my mind to an image on paper.

So I used Wassily Kandinsky’s version of St. George and the Dragon for the banner instead. I adore this painting. I love its rawness, its blazing primitiveness, its perfect flow and constant movement. I love the artist’s magnificent use of contrasting and complimentary colors; combined, they pop the image right off the canvas and bring it alive. I love the dapple-gray warhorse and most especially I love the wry, knowing grin on the dragon’s face. Did Kandinsky put it there on purpose? I think he did. Everyone fights dragons of many kinds during the course of their lives, but only a very few actually slay them.

The only part of the painting I’ve never much cared for was the sacrificial maiden, set off to the right of the action as if she was an afterthought. In fact, she’s looking away from St. George and the dragon, a dreamy look on her moony face. Silly, overdressed twit.

You may have noticed that while I used Kandinsky’s wonderful art for my RheumaBlog banner, I usually cropped that brainless-looking girl right out. See, the brave knight attacking the dragon is me. And the dragon himself is my rheumatoid disease. In my ongoing battle with him, there’s simply no place for a helpless woman.

Still, as compelling as Kandinsky’s artwork is, I’ve long wished I could create some art of my own to use as RheumaBlog’s banner. And now, finally, I’ve done it! I had to crop it tightly to fit WordPress’s parameters, but I think it still works. The smirking rheuma-dragon is there–and so am I: small, chubby, but fierce and determined.

Here it is, uncropped:

I’d really like to know what you think of it. I realize it’s much less dramatic and more humorous than Kandinsky’s work (and jeez, he was an actual Famous Artist!), but I’ve used humor and whimsy as my armor against this disease from the start. Finally, my own art works best!

I’ve changed the page’s colors to match up with the new banner. I realize that some of you may have difficulty reading the type on a colored background. Please let me know if the pale yellow is a problem and I’ll be glad to change it back to white. I’m just playing around with the design elements right now, tweaking here and there for looks and readability. I want to hear from you so I can make sure it’s accessible for everyone.

I created this artwork with my imagination, my new Surface Pro tablet computer and stylus, and the wonderful illustration and manga program Clip Studio Paint.

And now, it’s late. The rheuma-dragon, that monster, is gnawing that tearing at my fingers, hands, and wrists. So I’m bugging out for the night, achy and weary, my dragon still un-slayed. But you know what? I’m also really happy.

 

Wanna Help Me Out?

I’m excited!JointDecisions

I’m attending the Joint Decisions Empowerment Summit in early November. This year it’s being held in Sausalito, California alongside the American College of Rheumatology Conference taking place in San Francisco at the same time.

Sponsored by Creaky Joints and Janssen Biotech, the summit is an amazing gathering of the most inspiring, creative, caring, informed, and influential patient bloggers/advocates in the nation. I feel incredibly honored (and humbled) to be included among them. Each one of us, like you, lives every day of our lives with one or more (!!) autoimmune rheumatic diseases, including rheumatoid disease, lupus, psoriatic arthritis, and ankylosing spondylitis.

If you’d like to see a short video summing up what the Joint Decisions Summit is all about–and see clips of such influential bloggers as Rheumatoid Arthritis Guy, Britt Johnson (Hurt Blogger), Carla Kienast (Carla’s Corner), Mariah Leach (From This Point. Forward), and, well, me, all of whom attended the JD Empowerment Summit last year, click here.

This year, I’m also participating as a panel member in a Creaky Joints virtual web seminar–a webinar–during the summit on Saturday, Nov. 7 at 8 p.m. EST. The subject: “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.” If you’d like to be part of it–and it promises to be chock full of valuable information–please register here.

An open, honest give-and-take between doctor and patient is something I believe is absolutely vital to any sort of success in treating not only disease, but the whole

patient–the whole human being. After all, rheumatic diseases do affect our everything, from getting out of bed in the morning, to caring for kids, to working and playing, to our relationships both intimate and otherwise. And I believe communication is an area in which both patients and doctors need  a lot of help.

To that end, I’d like to pose some questions to all of you. Your answers will help us make the webinar both educational and–more importantly–useful and empowering to all of us.

So, without further ado (I love that word!), here are my questions:

  1. Your rheumatologist walks into the exam room and says, “how are you feeling?” Well, I don’t know about you, but “pretty good” or “fine, thanks,” pops out of my mouth automatically, even when I’m in pain. I’m so used to hiding how I really feel from others, it’s hard for me to be truthful even with my doctor. What might be a better way for the doctor to phrase that question? What could they say that would prompt you to share how you really feel?
  2. What’s your relationship with your rheumatologist like? What’s helped or hindered it?
  3. Does your rheumatologist include you in their decision-making process regarding treatment? When you make your own decisions/changes, such as stopping meds or changing/adding diet, exercise, or supplements, do you share them with your doctor? Why or why not?
  4. What physical and/or emotional barriers to your health and well-being do you face? How do you address them? What’s worked for you?

Your answers will be anonymous and enormously helpful. I can’t thank you enough for taking a few minutes to answer them in as much–or as little–detail as you choose.

I write RheumaBlog, articles and posts about RD for RheumatoidArthritis.net and other health websites, and I tweet about RD on Twitter because I want to connect with others who also have this difficult and frustrating disease. For many, many years I felt totally alone with it. Finally being able to meet and interact with others, even if only virtually, was and continues to be a balm to my soul and a light in my heart.

But more importantly, I write and tweet because I want to help others who may not have as much experience in coping with this disease as I do. I clearly remember being a rheumatoid disease newbie. I didn’t know anything about it or what to ask my doctor. I coped with dreadful, disabling pain even as I worked full time, did aarthritis_by_thevilbrain great job at being a parent to my daughter and a wife to my husband, took care of our home and all the chores associated with that, wrote and made art, and tried my best to be a social person, as well. It was tremendously hard, and I did it without having anyone who really understood the pain, fatigue, and fear the disease could cause to talk to.

But with the Internet and social media, that’s all changed. It doesn’t have to be that way anymore–we don’t have to spend our lives isolated inside this disease. Do, please, take a couple of minutes to think about and answer the questions I’ve asked above. Your answers may help someone else cope better with their RD and may give them hope and calm their fears. Consider taking part in the webinar on Nov. 7. And always, always feel free to reach out to me here on RheumaBlog, or on Twitter ( I’m @RheumaBlog_Wren), or via email: bluewren56@gmail.com.

I love talking to you.

Out of a Table-sized Box …

… comes an art-sized table.

When I started putting my new drawing table together on Saturday, I discovered that it would require screwing in about a thousand screws. My hands just aren’t up to that, unfortunately. So, after a bit of thought, I decided to head to the hardware store to buy myself (hopefully) an inexpensive electric screwdriver.

An hour or so later, I had one. Made by Black & Decker, and only $20! Yay! I headed home, opened the box my new tool was in, and came to yet another dead stop. It had to be charged for at least 16 hours before use. So, shaking my head, I plugged it in and put off building the new table until Sunday. Disappointing, really.

Sunday, mid-morning, arrived. After reading all the directions, it was clear I was going to need some help, even though I had a magic electric screwdriver. Along with screws, there were Alan wrenches involved, and of course, balancing one piece on or next to another other for joining by screws and Alan thingies. So I enlisted Mom. To my surprise, she was happy to help!

And so, two hours later, after much discussion, a little arguing, occasional grunting, much laughter, a few cries of dismay, and finally, an exhausted high-five, we were done. My drawing table was ready to use!

I cleaned up the construction mess, unboxed the task lamp, and attached it to the table. Both are “vintage” styles, and they look great together. Then I laid out my art things and a work-in-progress that I’d had to stop working on when we moved back in September, and as a final touch, put my Laughing Buddha at the top of the table, overlooking everything. Gazing at it made me smile. There were other chores to take care of Sunday, though, so no opportunity to use it all, yet. But Sunday night I went to bed a sore but happy camper.

Today, I had a writing assignment to complete, but tomorrow I’m planning to give the whole day over to art.

My hands are flaring painfully as I write this, and I’ve been alternately icing and heating a flared left shoulder. Still, I’m hoping for a restful night’s sleep tonight, and a mild-pain day tomorrow.

Here’s my already-beloved art-making place:

New Drawing Table

Revisiting an Old Passion

Vintage Drafting TableI took a big step forward this week. For some time now I’ve yearned to start drawing and painting again. The talent I was born with is still with me, but it’s been decades since I’ve created anything beyond the occasional doodle. Since moving to our new apartment back in September of last year, I’ve been slowly collecting art supplies: paper, paints, colored pencils, drawing pens in the hope that I could start exercising my art muscles again, practicing and burnishing old skills, and preparing myself to learn new ones.

But until recently, I’ve had no space to spread these things out where I could work on something off and on as time and my rheuma-hands permit. Creating art does take time, and the creative urge (at least for me) is easily squashed when I’m forced to get all my supplies out and then put them all away again an hour or two later every time I want to work on something. For me, art is a spontaneous undertaking: the muse beckons or time and inclination merge, and I need to get to work. Right then, not later, not after having to set the space up yet again. Not being able to do this was frustrating.

But now, I have a Room Of My Own (ROMO). For the first several months after Mom and I moved, we had to use the big third room in our new apartment to store all of mom’s excess stuff. But that’s all now in storage elsewhere. So, after saving my pennies for a while, and comparing prices all over the place, I finally took the plunge. OnTuesday this week I ordered and paid for a beautiful, vintage-style drawing table, a sturdy, ergonomic adjustable chair, and a good task light.

UPS is delivering them today. To say that I’m excited is an understatement. It’s been too, too many years since I’ve been able to have my art supplies out where I can work on my art whenever I have the time and the urge.

Of course, the rheuma-dragon is being particularly unkind these days. He’s taken to concentrating most of his fury on my wrists, hands, and fingers, and I sort of need those to make art. But I figure I’ll just take it slow. Do what I can, rest, pace myself. Make the whole process more contemplative, and use it as a distraction from pain and frustration.

When my new “studio” is put together, I’ll post a photo.

For me, the decision to buy these artistic tools cements my determination to be visually creative again, something I can add to my writing as a way to express myself and help me cope with life’s stresses and the particular anxieties that having rheumatoid disease causes. I’m  now a step closer to making that happen.

Dreaming …

kandinsky-stgeorge-RheumaBlog“Fantasy is silver and scarlet, indigo and azure, obsidian veined with gold and lapis lazuli. Reality is plywood and plastic done up in mud brown and olive drab. Fantasy tastes of habaneros and honey, cinnamon and cloves, rare red meat and wines as sweet as summer. Reality is beans and tofu, and ashes at the end. Reality is the strip malls of Burbank, the smokestacks of Cleveland, a parking garage in Newark. Fantasy is the towers of Minas Tirith, the ancient stones of Gormenghast, the halls of Camelot. Fantasy flies on the wings of Icarus, reality on Southwest Airlines. Why do our dreams become so much smaller when they finally come true?”

–George R.R. Martin

I Saw New York City

I really did. There it was, that iconic American city, turned into the real thing just by spending seven cramped hours squashed into an airliner with 200 other people. Now it was just a not-impossibly long, cold swim across the Hudson from where I stood. NYC shimmered in the westering sun, curiously weightless–even ethereal. And, like the old cliché, it was so close–and yet, so far away.

April 18, early evening

April 18, early evening

It was the evening of April 18, somewhere around 5:30 p.m. I’d spent the day inside a huge conference room at the Hyatt Regency Hotel, Jersey City, learning with about 60 other patient health bloggers/advocates how to do what we do better. The program was fantastic. The things I’d heard, seen, and learned were swirling in my head, a mix of images and ideas I had yet to separate and pin down.

And now, there was New York City. It was right there. There was a subway station and a train a short stroll away that could shwoosh me beneath the river and spit me out within a block or two of the World Trade Center. I’ve dreamed of going there for a long time to pay my respects at the 9/11 Memorial, and being realistic, I knew I’d probably never have another opportunity to do it. Sure, I still had a dinner with several of my fellow patient advocates to attend, but after that, I’d be free to board the train. In mere minutes I could be peering up at those incredible skyscrapers–including the newly finished Freedom Tower–from my own, 5’3″, wide blue-eyed perspective.

There was just one problem. I was so stiff, achy, and exhausted I didn’t know where I was going to find the energy to make it through dinner, let alone to wander NYC on foot afterward.

The fact was, my rheuma-dragon had sucked away most of my oomph. The old beast was making my hands and feet hot, swollen, and painful, and making the rest of my body feel like it had been stuffed loosely into a barrel with stones the size of fists and kicked rudely down a steep hill.

I decided to go to my room and lie down until dinner, hoping to recover a little bit of energy. And instead of ruling a trip across the Hudson into the city out, I decided I’d wait and see how I felt after the meal.

As you might have guessed, I didn’t go to NYC that night. My dragon had just taken too much out of me. But I wasn’t sad about it then, and I’m still not. I got to see that magnificent city with my own two eyes, even if it was from a distance.

And really, I got a much greater gift from the weekend than an hour inside a postcard from Manhattan: I got to meet dozens of truly remarkable, amazingly brave, resilient, selfless, loving and laughing people–and all of them fighting their own personal dragons, each of which is as big, as cruel, and as merciless as my own old rheuma-dragon.

I wasn’t the only one at the HealtheVoices15 conference who was in pain, ill, and exhausted that night–but who looked perfectly normal on the outside. I wasn’t the only one laughing and talking, exchanging anecdotes and email addresses even as I groaned inside. Every single person who attended the conference was a smiling warrior fighting a serious (and often devastating) disease, like metastatic breast cancer, ovarian cancer, and prostate cancer; leukemia, CLL, MM, and WM; HIV; hepatitis C; psoriasis and psoriatic arthritis; cardiovascular disease; IBD and Crohn’s disease; mental illnesses such as schizophrenia; multiple sclerosis; Type 1 and Type 2 diabetes; lupus; and like myself, rheumatoid disease.

It was overwhelming. Humbling. Inspiring. Seeing all these people–men and women just like me–who were not only living well with their diseases but making it their business to reach out and help others like them gave me such incredible hope for the future.

This is human kindness, love, and resilience in action. And the sponsors of the HealtheVoices15 conference (Janssen Biotech and Everyday Health) brought us all together to help us learn new (and in some cases, better) ways to reach out to others like us to offer our support, encouragement, love, and care. We learned how to protect ourselves against compassion fatigue, how to measure our success online, about how to make the best of our online resources, and how to stay on the right side of the law while blogging, tweeting, and otherwise writing for the public, and we learned about how we might turn our patient advocacy into a full-time career, if we wanted to do that.

But the best part of the conference was still the people who attended it. The biggest eye-opener, for me, was that we all shared the same feelings about our diseases and how they affect us. We’d all felt alone and isolated from the rest of the world. We’d all felt misunderstood and often minimized by society–and even the healthcare industry we depend on to treat our disease. Almost all of us had begun our journeys into health/patient advocacy because we wanted information about our diseases that our doctors couldn’t–or wouldn’t–share with us, so we started looking for it on our own, on the Internet. And we all wanted to find others like us. Once we’d found them, we were hooked.

It’s taken me several days to wrap my mind around what I learned during the HealtheVoices15 conference. It’s taken that long just to recover from the travel, renew my energy, and get my rheuma pain back down to manageable levels. But it was worth it, all of it, for the huge gift of meeting my peers and making so many new friends.

I’m just babbling, now, so I’ll bring this post to a close. First, though, a little housekeeping:

1) Jannsen paid for my travel expenses for HealtheVoices15, but of course all the thoughts and opinions I’ve expressed here are entirely my own.

2) As you’ve probably noticed, I’ve changed RheumaBlog’s design to better fit a variety of devices. (Update: I’m still working on the site, so don’t be surprised if further changes occur without notice. It’s just me.)  😉   You can read it much more easily now on your tablet or cellphone, if that’s how you roll. If you’d like to see my blogroll, more about me, my twitter feed, and archives, scroll to the bottom of the page and click the little triangular button.

Wren Flies East for the Weekend

NYCfromVuCafeHyattJC

My photo of the New York City afternoon skyline on Friday, April 17, taken from the Hyatt Regency Hotel, Jersey City on the Hudson. Ahem. NYC!!!

OK I’m not a bird, but I share that wee, brown, feisty-tailed featherfluff’s name. I might have had a feisty tail [wink] once upon a time, but today “feisty” fits my general attitude better. And while I don’t have wings, I still flew all the way from California to Jersey City, NJ yesterday. As I write this, I’m at the Hyatt Regency Jersey City on the Hudson, just back to my room after cocktails, schmooze-time, and dinner with 60-something other patient bloggers/advocates. It was a great start to the HealtheVoices15 event, put on by Jannsen and Everyday Health, and it continues tomorrow.

With RheumaBlog, I write about living well with rheumatoid disease, hoping to reach out to others, like you, who share it with me. Blogging allows me to share what I’ve learned about RD (and what I’m still learning!). It gives me a way to offer my support, comfort, and encouragement, and to let others who have this disease know that they are not alone and that I understand their pain, frustration, and fears absolutely. And blogging lets me build cameraderie and lasting friendships with everyone who stops by RheumaBlog to read. Writing it has been, and continues to be, one of the most transformational, hopeful, inspiring, and just plain fun things I’ve ever done. I’ve met so many incredible people!

My companions at HealtheVoices15 this weekend are patient advocates representing a large number of other diseases, including breast cancer, psoriasis, psoriatic arthritis, diabetes, prostate cancer, HIV/AIDs, Crohn’s disease, Hepatitis C, and more. Each one of

My rheum-mates Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Britt Johnson Hurt Blogger), and Leslie Rott (Getting Closer to Myself) joined me in the Vu Cafe this afternoon! Laughter ensued.

My rheum-mates Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Britt Johnson (Hurt Blogger), and Leslie Rott (Getting Closer to Myself) joined me in the Vu Cafe this afternoon! Laughter ensued.

them reaches out to others with the same need to communicate, to tell their stories, to help others not to feel alone, and to offer their support and encouragement. Sitting there tonight, sharing a meal with so many amazing, selfless, inspiring, and just plain nice people was an honor I won’t ever forget.

Jannsen and Everyday Health gathered us here to help us learn how to be even better patient advocates through the use of social media. I’m just a barely fledged Twitter tweeter, so I can stand to learn how to do it more effectively. And there are so many other forms of social media out there. It’s like having the world open up before my feet. I feel so honored, and humbled, to be chosen to participate in this historic (it really is!) event.

I’m feeling very accomplished. And very, very tired. So, although I’m not going to write much more tonight, please stay tuned. My typing feathers are preened and primed, and there’s more to come.

NOTE: Jannsen paid for my travel expenses for HealtheVoices15. All thoughts and opinions expressed here are my own.