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.

Posted in RA

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.

Posted in RA

Shot in the Belly

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

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.

The Storms in my Joints

Everett Shinn, "Snowstorm on Broadway"

Everett Shinn, “Snowstorm on Broadway”

With winter still pummeling large parts of the U.S., it seems like a good time to talk about how the weather may affect rheumatoid arthritis. Because I’m here to tell you, I don’t care what those skeptical scientist/doctor-types say. For an awful lot of us with RA, the weather does have a rather big effect on how we feel …

Read the rest here.

Posted in RA

Moody

Remember mood rings?

Heh. Well, unless you’re of a certain age, you probably don’t. Created back in 1975, mood rings were these quirky, goofy rings with a fabricated stone that responded to–the makers claimed–your mood. If you were happy, the stone was a lovely aquamarine blue. If you were depressed, it was gray. Angry? Red. And etc. They were all the rage for a couple of years, and then, like most gimmicks (think Pet Rock), they faded mostly off the market.

 *Note: A quick googling tells me that mood rings are still out there, now in a huge variety of shapes and settings. Who knew?

Anyway. Back in August of last year, when I was in the middle of packing up and moving Mom and myself to our new apartment, I bought not a mood ring, but one of those little solar-powered toys for a couple of dollars to cheer myself up. It was a rough time for both of us: physically and emotionally exhausting at once. My toy is a daisy that nods its flower head from side to side, and sorta flaps its little leaves up and down when the sun hits the sensor. I used a black Sharpy to draw a little smiley face on the yellow middle of the daisy, too. It just tickled me.

Since then, I’ve gotten into the habit of setting it in my window when I get up in the morning so it nods happily nearby as I work. No matter how much pain I’m in or how blue I might feel, it makes me smile whenever I look at it.

So you can imagine how I felt this morning when I started to move the blinds aside a bit for my Happiness Daisy–and discovered

IT WAS BROKEN!

BrokenHappyDaisy1Oh, woe! Somehow my toy daisy’s stem got broken at the curve. It’s little head was drooping sadly.

Now, here’s the thing. When I saw it, my mood just flopped to my slippers. It’s silly, I know. I can replace that toy without much effort or cost. But it was special because of when and why I bought it, and that time is past, gone, and can’t be reproduced.

And that’s what made me think of those goofy mood rings. If I had one now, I wonder what color it would be. Black? Olive green? Brown?

I’m going to try a drop of epoxy or tape or something to fix my Happiness Daisy. In the meantime, I’ll just have to remind myself that life does go on, and in spite of the highs and lows, it’s usually pretty darned good–today included.

Here’s hoping that your Happiness Daisy, whatever it is, is smiling for you today.

Posted in RA

Wren Interviewed

Recently, HealthyNew24 got in touch and asked me to answer a series of interview questions about living with RA. Here’s the result.

Rheumatoid Awareness Day

Rheumatoid Awareness Day is today, February 2. Let’s join the RA Day’s founder, the Rheumatoid Patient Foundation (RPF), in taking up the banner to help spread the word about rheumatoid arthritis, a confusing and misunderstood disease…

Read the rest at RheumatoidArthritis.net.

New Blogger Alert!

Starting a blog takes a special type of courage. You’re putting yourself out there for the whole world to see, baring your thoughts, details about your life, and sharing your hopes and dreams.

Now add that you plan to blog about growing up with Juvenile Rheumatoid Arthritis, and about what it’s like to live with the disease as a young adult, just as you’re getting a good start in the world.

Please join me in a warm welcome to Stephanie, who’s just started her new blog, “All Grown Up With JRA,” to the online RA community. Stop in and say hi, won’t you?

To read her first post, click here. You can also find “All Grown Up With JRA” in the blogroll to the right.