Tag Archives: emotions

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.

Out of a Table-sized Box …

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… 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

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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.

Dreaming …

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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

Wren Flies East for the Weekend

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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.

Today it rained a little …

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… but I can hardly get myself to look out the window at it. It’s because I know this rain means nothing in this fourth (and now critical) year of drought. It can’t help us. It won’t fill the reservoirs to brimming again, even if it rains for days in the valley and snows in the mountains. It’s too little, too late. It’s a mean tease, like a couple of older kids who ask you to play ball with them, put you in the middle, then throw the ball to each other over your head, higher than you can reach even when you jump. You want to like playing with them, but they only frustrate you and make you feel inadequate and stupid, and in the end you just can’t.

That’s spring rain in California during a drought.

I’ll tell you about this stupid little rain. The parking lot pavement got wet and shiny black, and there are a few thin puddles. Water is beading on the metal hand-railings by the steps and on the on the leaves of the hedge gardenias outside the door. I don’t want to like this, because it’s too much like giving in, but the scent rising from the wadded-up little ivory flowers is sweet and heavy, but fresh, too. The beads of water form translucent pearls on the little dark green, blade-shaped leaves of the potted azalea on the back patio. The old fence is wet halfway down, contrasting dark above with light below. The traffic-y air smells washed and clean. There’s a sharp little breeze.

They say we’ll have some more rain tomorrow. It’s an awful tease, but I hope we do.


This is Day One of Writing 101: Building a Blogging Habit, WordPress’s free, 20-day writing course for bloggers. The assignment was simply to write for 20 minutes without preparing first, then posting it to my blog. I’ll be writing something new each day, following Writing 101’s prompts. I’m excited to see what shows up.

Shot in the Belly

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Just thought I’d stop by and tell you how my last Humira injection went.

If you read my last post, you’ll know that self-injecting this medicine has been fraught with jitters for me. It hasn’t mattered that I know the shot won’t hurt as much as my imagination is sure it will. It hasn’t mattered that I know the stuff may send my rheuma-dragon into a stupor and, perhaps, put an end to at least some of the neverending pain that claims so much space in my consciousness each day.

Nope. Doing this twice-monthly jab has simply been crap.

Many, many nice people, fellow-rheuma-travelers all, responded to my post. They commented here, on RheumaBlog, and at RheumatoidArthritis.net, where the post was published in full. The vast majority commented on RA.net’s Facebook page.

I just want to say thank you, right now, to everyone who commented, for being so incredibly supportive. I didn’t really think that I was alone in hating to jab myself, but I had no real idea just how many people who take subcutaneous biologic DMARDs have almost exactly the same fears that I do, and that they face and overcome them every single time they inject, too. I realize, now, that I’m an unwitting member of a huge secret society. It’s called the I HATE JABS Society. 😉

Many of those who commented suggested I switch injection sites from my upper thighs to my abdomen. I chose to inject into my thighs, originally, because it seemed to me that if it was going to hurt, it would probably hurt less there. The idea of sicking a needle into my belly gave me the heebie-jeebies.humira-pen-figure-j-90-degree-angle

But so many people said it hurt less in the abdomen. A lot less. So many people, I reasoned, couldn’t all be wrong. So when I injected the other night, I did it in my tummy.

Heheh. Wow. It … worked. There was no pain. OK, maybe a second or two of “ah, there it is, here comes the burn” but then that went away and there was no burn at all. There was no pain when I removed the pen, and no pain when I put the little bandage over the tiny bead of blood that welled where the needle had penetrated.

No pain. No nothing!

So, I’m pleased to say that I’ve no longer any reason to dread these injections. I am so glad–and so incredibly grateful to everyone who commented. Let me give the advice, now: If you inject DMARDs, seriously consider injecting in your abdomen, even if the idea makes you shudder.  It’s so much better!

Now, if only my super-charged immune system will slack off a bit and let the Humira do its job. That would be the real triumph. Fingers crossed.

Driven to Distraction

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Renoir-woman-at-the-garden-1873self-portrait-pierre-auguste-renoir-SAFEThe pain, fatigue, and malaise of RA can be completely overwhelming. It can keep us from working, going out with family or friends, or simply stop us dead in our tracks. How was the beloved Impressionist Pierre-August Renoir, who had severe, disabling RA during the last 20 years of his long life, able to keep on? His art–and with the power of distraction.

Read about how Renoir’s drive and courage can apply to our own lives with RA in my latest post at RheumatoidArthritis.net.

Vintage

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Writer/curator Maria Popova used the word “vintage” in a recent post on her delightfully fascinating website, Brain Pickings, referring to a children’s book published in 1971.

I love Brain Pickings (I love books, and art, and illustration, and it satisfies all three appetites), and I love Popova for her informed, whimsical style, but vintage? Vintage?

I was 15 years old in 1971, teetering on the cusp of high school. But yes, I know. That was, um, forty-three years ago, but I swear it only feels like 13. Maybe. So how can a book written in 1971 be vintage?

I mean, doesn’t that make me vintage, too? Since I’m … ah … even older?

When I think of something that fits the word “vintage,” I think of a really old bottle of wine. A vintage book, to me, is Moby Dick or The Last of the Mohicans. (A really vintage book might be anything by Plato). Vintage clothes, to me, comeVintage clothes from the 19th and early 20th centuries, and a vintage car is Packard, not a ’68 Mustang (which I owned).

But maybe I’m looking at the whole concept of “vintage” too narrowly. If I think back to how I perceived life when I was 30 (that was about five years ago, memory-wise), I saw things that had happened or were made around 40-50 years before as “vintage.” Meaning, of course, “old,” but in a fond, venerable sort of way. Some of those events, like WWII and Hitler and the slaughter of the Jews were horrifying, tragic, and mind-shudderingly awful, but they were also safely “vintage” in my mind, lost in a past, in times, and in circumstances I felt sure we’d never, ever repeat.

So it shouldn’t really surprise me that Maria Popova sees the 1970s and earlier as “vintage.” She’s about 30 years old, bless her heart. My daughter is 32, and I know she thinks I’m rather old. Given how I felt at their ages, I guess I can forgive them both.

And maybe there’s nothing wrong with being of a “vintage” age and era. Vintage wines, after all, are the best. Of course, if they turn to vinegar they can also be the worst, but in real life, a little vinegar now and then keeps us humble and honest.

I’d have never believed that I’d ever be “vintage” when I was 15 years old and the world was a vast, inviting, dazzling playground, filled with dreams and adventures and spread out in front of me like a magic carpet, inviting me to take a ride, but here I am.

And you know what? I don’t mind a bit.