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.

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.

Anticipation

AnticipSubcutaneous_injectionating a delicious meal or a fun outing is one thing.

Jab day is another. Am I being childish, or just human? Find out.

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.