Category Archives: Patient Advocacy

Wanna Help Me Out?

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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.

Revisiting an Old Passion

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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.

I Saw New York City

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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.