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.

Today it rained a little …

… 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.

Even better arthritis-friendly key caps!

I have some good news!

In July of last year I posted about a nice little product called “Label Label Key Caps.” They’re small, stretchy, color-coded rubbery covers for all the keys on oldkeycapsyour key chain, and they come with nifty labels so if the colors aren’t enough to help you tell them apart, you can label ’em, too.

That’s all great, but the real reason I reviewed the key caps was because of their arthritis-friendly qualities. Because they make the top of the key a little bit larger, thicker, and softer, they’re easy to grasp with dodgy arthritis fingers. Keys can be hard enough to turn without also digging painfully into tender joints, and the key caps helped with that, as well.

I liked the Label Label Key Caps a lot, except for one thing. They were kind of hard to put on the key. It took some twisty maneuvering and a surprising amount of muscle to stretch them over the top of the key. On a bad-hands day I’d need to have someone who doesn’t have rheumatoid disease or osteoarthritis do it for me. It wasn’t a deal-killer, but it was something to consider.

Eight caps, 16 labels, both pre-printed and blank.

Eight caps, 16 labels, both pre-printed and blank.

So what’s the good news? Label Label Key Caps has come out with a new and improved version of their product! I like them a lot better.

They’re still colorful, and there are still those nice, sticky little labels. The difference is in how stretchy and malleable the small, rubbery caps are now.

My hands are about the sorest and tenderest they’ve been in two years right now. Almost everything I do makes me mutter “ow” under my breath. Occasionally, the “ow” is accompanied by an explosive expletive.

But as I stretched one of the new key caps over a largish square-topped key, my “ows” remained soft and of the single-syllable persuasion. It took about

My pretty new pink Laundry/Gym key.

My pretty new pink Laundry/Gym key.

15 seconds to work it onto the key. (That’s about half the time as last time.) And not only that, the soft, rubbery material they’re made of is even softer than it was before. They make the key even easier to grip–and they stay on the key better, as well.

The packaging is still super-easy to get into. None of that awful, tough, clamshell plastic that you end up prying off with the help of scissors, muscle, and blood. The key caps are arranged on a small card, along with the labels. The plastic is formed over them, but merely folded over the edges of the card and fastened down with a single staple on each side. No pain. No blood.

It is to like.

There are still eight key caps and 16 labels. Eight of them are pre-printed with words like OFFICE and HOME, and the other eight are blank so you can fillLabelLabelKeyCaps them in yourself. I labeled my test key WASH/GYM. You know. The laundry room and gym at my apartment complex.

If you’d like to try out some Label-Label Key Caps for yourself, visit www.LabelLabelKeyCaps.com. The 8-Pack in bright colors is just $8.99, and shipping is free. That’s a pretty decent value for something this arthritis-friendly. And they’ll last for years and years.

Tattoos, and How I Messed Up

This is going to be a catch-all post. Please be patient. First:

No, I didn’t get a tattoo.

I rather like them, but I’ve never had the nerve to get one myself. Recently, though, the nice folks at Healthline, who named RheumaBlog one of the Best Rheumatoid Arthritis Blogs for 2014, pointed out to me that getting inked with a285x285_Best_RA_Blogs_2014_1_0 rheumatoid disease-related design can be a powerful reminder that you’re stronger than your condition. It is, they pointed out, a great way to raise awareness about it, too. To illustrate that point, Healthline has set up a slide-show at their website that shows off some pretty cool tats. You can take a look at it here.

It turns out that there are lots of people who cope with rheumatoid disease who’ve had the courage to get a tattoo–and they got designs that help them advocate for themselves and the disease. Others have RD-related designs tattooed on various body parts to lift their own spirits and remind them of their own awesome strength and courage in coping with such a difficult, painful, and often disabling disease.

Well, I’d never thought about tattoos quite like that, before. What a great idea! So, here’s the deal: Healthline is putting together a second slideshow about rheumatoid disease-related tattoos. If you have one, and you’d like to see it included in the new slideshow, just do this:

  • Send a clear photo of your tattoo (at least 285×285 in .jpg or .png format) to nlascurain@healthline.com with the subject line “My RA tattoo” by April 3, 2015.
  • In 90 words or less, describe the inspiration behind your tattoo.
  • Please identify if you’d like your name published or not.

Healthline will then publish them in the new slideshow on their website, and share with their Facebook community.

My Mess-Up

I tend to be a little scatterbrained sometimes. OK, a lot scatterbrained. Take a creative, artistic, right-brained woman, add a little rheumatoid disease brain-fog, and yep, look up “scatterbrained” in the dictionary and you’ll find me. But really, I outdid myself this time.

I had an appointment scheduled with my rheumatologist last Saturday morning. It was important; I’d been looking forward to it for months. My doc and I planned to discuss starting me on a different biologic, probably Enbrel, because Humira just hasn’t stepped up to the job after a full half-year. My rheuma-dragon has become increasingly aggressive over the last several months. Sometimes I think he’s laughing at me. And of course, intending to show him who’s boss, I wanted to get this switch-over going as soon as possible.

And then my cousin, who I rarely get to see because she lives in Idaho, came with her husband to visit last Friday. We enjoyed a great day with them, catching up, talking about everything and then some more, sharing a tasty dinner and some nice wine and lots of laughter. They spent the night.

The next morning, we were all enjoying a cozy, mid-morning breakfast, complete with bacon, toast, and eggs, laughing and talking, when Mom suddenly said, “Didn’t you have an appointment with the doctor this morning?”

Aww, man! I’d missed my 8:20 a.m. rheumatology appointment, the one I’d waited and waited for! I tried to call them, but it’s a specialty Saturday clinic, and the VA’s operators are, for all intents and purposes, off work for the weekend. And I knew from long experience that my rheumatologist’s Saturday clinic is packed; he sees about 25 patients every Saturday, and many of them travel considerable distances to see him. The chances that he might be able to squeeze me in were pretty slim–those appointments are like gold. So I had to just suck it up and wait until Monday. I rescheduled my appointment for the Saturday after next, the soonest they had an opening.

If there’s a tiny silver lining to this doofus mishap, it’s that I’ll be able to take another dose of Humira before the next appointment. Somehow I ended up with two extra doses, and I was feeling bad that they’d go to waste. I’d talked to the VA pharmacy about bringing them back, but apparently the law says they can’t take them. Nor can any regular pharmacy, once they’ve been shipped out. That seems a terrible, shameful waste to me, considering how incredibly expensive these miraculous drugs are. But at least now, I’ll only waste one dose instead of two.

Here’s the other reason I’m sorta glad I can take another dose. I noticed about four days before I took the last one, two weeks ago tomorrow, that I was hurting more than usual. These days, I pretty much hurt all the time–my hands and feet, mostly–and my energy levels are pretty pathetic. But it seemed that as the injection day got close, all of that intensified.

I hadn’t noticed Humira having any effect before that, though. So it made me wonder if perhaps it is actually doing something. Not enough, but something. And, just like last time, for the last three days my pain and fatigue have increased at least two-fold. After I inject tomorrow, I’ll pay closer attention to how I feel during the days that follow. By taking this last dose before I see my rheumatologist, maybe I can tell him that it was slightly effective and not a total waste of good medicine and time. After taking it for six months, it would be nice to have something good to share about it.

So. This wasn’t a very exciting post. But I did get to tell you about Healthline and their search for RD tattoos. I hope you’ll get in touch with them before April 3 if you have one you’d like to share with the world.

NOTE: Catesanseraser, a really smart and very kind reader, quickly commented below to remind us to be careful about getting tattoos if we’re taking drugs to treat RA: “… (T)hose of us with compromised immune systems due to Humira and similar drugs should be extremely cautious [about getting tattooed]. Infections are easy for us to get and hard to shake if we get them. Anyone who is taking a biologic should be certain to discuss it with their doctor first. Some docs recommend prophylactic antibiotics. Know your artistic and make sure they understand that you’re immune compromised before getting a tattoo.”

A Very Nice Surprise

This frog and I like the rain.

This frog and I like the rain.

So, this morning it rained.

I know that means nothing (or less than nothing) to everyone who doesn’t live on in California, but to us—to me—rain is a Big Deal. When I woke up and, after creaking out of bed, shuffled into the kitchen for coffee, my mom said (she was already up and in there) “My newspaper was in a puddle.”

I blinked at her. “A puddle?”  Unless someone had come along in the night with a secret watering can and anonymously watered the potted hosta in the covered hall outside our apartment door, that sounded impossible.

“Yes, I think it might have rained a little bit overnight.”

I didn’t believe it. For the last week the weather guys on TV had been talking about the slight rain that just might happen by today, building up our hopes. But by yesterday they were assuring us that it was nothing to get excited about. Maybe the far, far north end of the state might get a light sprinkling, and the highest-elevation Sierras might see an inch or two of snow, but the rest of us were going to be dry as an old bone in the Sahara. In fact, in a couple of months, they might even change the name of the state to “Sahara II.”

I gimped over to the window and pushed the vertical shades aside a little. And gasped, because the parking lot was wet. Wet! “OMG, Mom!” I cried, “it’s raining!”

Unless you’ve lived someplace where a bona fide drought has set in, you probably can’t really imagine how good seeing a wet parking lot and puddles with raindrops making little rings in them make me feel. “Mom,” I said, “I bet the weather guys told us it wasn’t going to rain just so when we got up this morning, we’d get this great surprise! Wasn’t that nice of them?”

She gazed at me, unmoved.

“All the different weather guys from all the local TV and radio stations must have had a conference call! ‘Let’s not tell them it’s going to rain,’ I bet they said, ‘so everyone will get this great surprise when they get up in the morning!’”

Mom just looked back at her damp newspaper. She didn’t have to say anything. Her whole demeanor said “Oh, right. That totally happened.” Obviously, the weather guys just miscalculated a little, which is just so much less interesting to think about. Oh, well.

So I just poured my coffee, took my morning pills, and shuffled back to my room, where I sat looking out the window at the rain for a while. The gray sky and all the wet plants and trees and cars and stuff just sort of ease my soul, even though I know this little rain isn’t going to have any effect on the drought. Sunny California is a wonderful thing, but like any wonderful thing, you can get too much of it. We’ve had four years of too much of it.

It’s not raining hard. It’s a typical California rain. You can go outside without an umbrella because most of the time you’re not going to get very wet unless you stand out there for 15 minutes or so. But I’m absolutely not complaining. I’ll take any kind of rain the weather gods want to toss at us, particularly if it snows in the mountains. That’s where nearly all of the state’s year-round supply of water comes from—and there’s almost none up there right now.

—LATER—

So, it’s still damp and cool, and the pavement and earth is still wet, but the rain has stopped. It continued to fall for about two hours, which was heavenly, and the cool, rain-fresh air is lovely. And, now that the rain stopped and the barometer is starting to rise again, I’m feeling the change in my hands, hips, and feet.

That was another nice thing about the rain this morning: I barely hurt when I got out of bed. Usually I’m as stiff as the Tin Man, and as soon as I put my feet on the floor, they hurt. When I pick up my robe to put it on, my hands yelp at me. And as I walk, the bursitis in my hips starts aching, deep inside each one.

But this morning, after a night during which the barometer bottomed out and stayed there, all that was mercifully silent. I slept well, too, from about 11 a.m. until 5 a.m. when my bladder woke me up, and then again until 6:45. It was good, restful sleep, the kind I’d just about kill for most other nights.

Now the rain is done. The weather guy on the TV just said this little storm system is on its way out. I haven’t checked the barometer, but I know it’s rising again because my hands, feet, and hips are starting to hurt again. Tomorrow is supposed to be another beautiful day, sunny and warm, and by weekend, the temperature will be in the low 80s.

I’m glad I got to enjoy the rain for a little while. It was so nice.

Your Care Moments: Surveys & Money for Free

Recently, a nice young man from company called Zitter Health Insights emailed to ask if I’d participate in project they’re doing. Called “Your Care Moments,” it consists of a series of surveys about patient’s healthcare experience, and in my case, as a patient with rheumatoid arthritis. Zitter chose me as a possible participant because of my RA blog activity.

Slide2

Results from one of Your Care Moments survey questions. Click to embiggen.

In return for completing the survey, the fellow stated, Zitter would pay me. Then he asked if he could call me and tell me more about the project. He sounded so nice, and so earnest, that I said OK. A few days later, Keith—the nice young man—called and explained in more detail what Zitter and “Your Care Moments” were all about. He was just as pleasant on the phone as he was in his email, and I decided to go ahead and participate.

The following day I registered and filled out the first survey. It was simple, less than 10 minutes to complete. When I’d finished the last page, a window came up. It thanked me and assured me that there’d soon be a small stipend payment in my Pay Pal account in return for my information and time. And, it stated, in a few weeks, they’d send me another survey.

Keith called a couple of days later to ask how the survey had gone for me. I told him it hadn’t been a problem at all, and thanked him for picking me to participate. And that’s when he asked if I might tell all of you about it.

I told him I would, because I think what Zitter and Your Care Moments are doing is important and helpful for all of us as patients.

Zitter Health Insights does market research for pharma companies with the payer side of healthcare: medical directors, pharmacy directors, and managed care professionals. “What they think and recommend about different drugs … is

More question results. Click to embiggen.

More question results.

so important,” Keith stated in an email, “but the most important decision sits with the patient who actually takes medicines and experiences our healthcare system.”

Your Care Moments provides insights into consumer habits, decisions, and healthcare experiences. They do this through short, online, anonymous surveys that they send to their registered patients. [like Keith did for me.] The surveys take 5-10 minutes to complete on computers or mobile devices, and Zitter pays per survey. The company keeps in contact with each participant over time to follow when they’ll next see a doctor or pick up a prescription in order to survey them when the information is still fresh in their minds. Patients don’t need to worry that Zitter might share their identities; the company never asks for names or addresses.

“We give patients a voice to their healthcare experiences and a way to make some money while doing it,” Keith stated. ”Pharma companies want to know what patients go through, think, and want. The more people we bring on board, the better our research results will end up and the more opportunities there are for patients.”

The amount of each payment for completing a survey varies according to its type and length. Zitter informs registrants how much each individual survey will earn before they start.

Zitter receives and analyzes the information they collect, then sells it to bio-pharmaceutical companies to help them gain insight into patient healthcare experience, opinions, and habits. Zitter doesn’t work for any specific company or drug. They never sell or share email addresses, and all information you share with them is safe.

If you’re interested in participating in Your Care Moments, like I do, and would like to make a few bucks for your survey answers and time, click here. To learn more about Zitter Health Insights, click here.