RheumaBlog

Same dragon, different day.

Weasel Words

Illustration courtesy RheumatoidArthritis,net

I believe the two most disheartening words you can hear from a doctor are “chronic pain.” As in “You have chronic pain.”

Or worse, “You just have chronic pain.” This was what a rheumatologist, one of the rotating team of doctors I see these days, told me recently. The reason? My hands hurt even though my lab tests looked fabulous and there was no visible swelling or redness in my joints. This doc didn’t know why, so he said, his frustration with me plain in his voice, “You just have chronic pain.”

Ah. Well. That explains everything.

Please read the rest at https://rheumatoidarthritis.net/living/weasel-words/ .

 

Categories: RA

Gorilla and KittenHi, gang!

I hope you don’t mind, but I’ve been creating more artwork over the last several weeks and like all artists, I want to show it off to someone other than my mother and my cats. Thanks for being there, for caring, and for your encouragement. Really.

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Categories: RA

[Editor’s Note: This post was first published recently on the excellent RheumatoidArthritis.net website. You can read it, and many other posts by myself and an incredibly informed tribe of RD bloggers/writers by clicking right here. Thanks!]

Discovering that you have rheumatoid disease is a life-changer. First, isn’t all this weird joint pain something that only old people have to deal with? Arthritis—sheesh! Break out the stinky deep-heat ointment and grab a cane!

An RD diagnosis and all that it means

If you’re a young or young-ish person, say in your 20s or 30s (I was 31 at diagnosis), the news that you have arthritis is a real shock. Learning that it can distort your joints to the point of disability over time is frightening and sobering.

Discovering that this particular type of arthritis may adversely affect other parts of your body—your heart, lungs, or vascular system, for instance, is also scary. And that there is no cure for RD—yet!—is terrifying.

crazy-drugs-dogRD treatments can be scary too?

All that’s enough fright for anyone, right? But wait, there’s more. Now add to all of the above the fact that the drugs that treat RD sometimes cause unpleasant or even, well, nightmarish side-effects. Even … cancer.

Whoa! Flood the moat! Pull up the drawbridge! Bar the doors!

There’s no point in pretending that the powerful drugs we use to slow or stop the progression of this disease aren’t potentially dangerous. They are. But here’s the thing: the danger they may pose is very, very small. It varies from dose to dose, from person to person, and from case of RD to case of RD.

My own rheumatologist, when I shrank from the long list of scary-sounding side-effects of the first drug he prescribed, reminded me that without treatment, I could expect the disease itself to be plenty scary enough. Untreated RD can attack not only the synovial joints, causing severe pain and disability, but the linings of the heart, lungs, and veins, causing terrible, disabling illness and even death. RD can affect the eyes, causing vision loss or blindness, as well.

Risk posed by RD treatments is small

Taking the drug with its very small side-effect percentages seemed more worth the risk after I thought about it. And when I considered the fact that almost none of the side-effects were life-threatening, debilitating, or disabling, taking it seems like a no-brainer. So I did.

It turned out that I did suffer some side-effects from the drug—the more common ones of fatigue and malaise. Since they didn’t fade away, we decided to discontinue the drug and try something else. It worked.

I’ve experienced a few side-effects since then. For instance, I’ve slowly lost (and regrown), over a long period of time, nearly a whole head of hair. The new hair came back in curly, where it had once been straight, and brown, where it had once been blonde. Neither change bothers me. I’ve always wanted curly hair, after all. And I’m not sorry that no one ever mentions “blonde moments” around me anymore.

Now, if I make a mistake, it’s just that. I like it.

I’m not saying you shouldn’t be cautious and learn everything you can about the drug or drugs you take for your RD. You should. I take three traditional DMARDs, an injectable biologic, and an NSAID, myself, and believe me, I googled. And googled. And I think that it’s because of these drugs that I’m still able to type, to walk, and to live a relatively normal life. I don’t like to think about how things might be without them.

Now, it’s true that some of the drugs used for RD may cause various cancers in tiny percentages of patients. But there is some good news on that front. A recent study of RD patients showed that treatment with methotrexate and TNFi (TNF inhibiting biologic medications) didn’t increase their chances of contracting malignant lymphoma.1

Another recent study showed no increased risk of melanoma among RD patients taking a considerably long list of the RD drugs, including TNFi’s.2

Not being so afraid of the Big C is a relief. Knowing that my RD is under as much control as I can manage is a relief, too.

Categories: RA

 

I’ve wanted to create my own artwork for RheumaBlog’s banner for a long time, now, but I just couldn’t seem to translate the vision in my mind to an image on paper.

So I used Wassily Kandinsky’s version of St. George and the Dragon for the banner instead. I adore this painting. I love its rawness, its blazing primitiveness, its perfect flow and constant movement. I love the artist’s magnificent use of contrasting and complimentary colors; combined, they pop the image right off the canvas and bring it alive. I love the dapple-gray warhorse and most especially I love the wry, knowing grin on the dragon’s face. Did Kandinsky put it there on purpose? I think he did. Everyone fights dragons of many kinds during the course of their lives, but only a very few actually slay them.

The only part of the painting I’ve never much cared for was the sacrificial maiden, set off to the right of the action as if she was an afterthought. In fact, she’s looking away from St. George and the dragon, a dreamy look on her moony face. Silly, overdressed twit.

You may have noticed that while I used Kandinsky’s wonderful art for my RheumaBlog banner, I usually cropped that brainless-looking girl right out. See, the brave knight attacking the dragon is me. And the dragon himself is my rheumatoid disease. In my ongoing battle with him, there’s simply no place for a helpless woman.

Still, as compelling as Kandinsky’s artwork is, I’ve long wished I could create some art of my own to use as RheumaBlog’s banner. And now, finally, I’ve done it! I had to crop it tightly to fit WordPress’s parameters, but I think it still works. The smirking rheuma-dragon is there–and so am I: small, chubby, but fierce and determined.

Here it is, uncropped:

I’d really like to know what you think of it. I realize it’s much less dramatic and more humorous than Kandinsky’s work (and jeez, he was an actual Famous Artist!), but I’ve used humor and whimsy as my armor against this disease from the start. Finally, my own art works best!

I’ve changed the page’s colors to match up with the new banner. I realize that some of you may have difficulty reading the type on a colored background. Please let me know if the pale yellow is a problem and I’ll be glad to change it back to white. I’m just playing around with the design elements right now, tweaking here and there for looks and readability. I want to hear from you so I can make sure it’s accessible for everyone.

I created this artwork with my imagination, my new Surface Pro tablet computer and stylus, and the wonderful illustration and manga program Clip Studio Paint.

And now, it’s late. The rheuma-dragon, that monster, is gnawing that tearing at my fingers, hands, and wrists. So I’m bugging out for the night, achy and weary, my dragon still un-slayed. But you know what? I’m also really happy.

 

This info is from my dear friend and fellow RD blogger Carla. For me–and for so many others–there is a lot of hope tied up in this news. Bravo, Sanofi/Regeneron!

Carla's Corner

Late Monday, May 22, the FDA gave approval to Regeneron Pharmaceuticals, Inc. (NASDAQ: REGN) and Sanofi’s new biologic RA treatment, sarilumab, under the U.S. brand name Kevzara. It is the latest addition to the Interleukin Inhibitor (IL-Inhibitor) class of drugs that also includes Kineret and Actemra. The medication comes in an auto-injector and is administered every two weeks. The primary focus for this drug are patients that have “failed” on at least one other biologic. It can be used with or without methotrexate. The news release from the company can be read here: http://investor.regeneron.com/releaseDetail.cfm?releaseid=1027419

I am personally thrilled that there is a new option for RA patients, especially those like me who have been on numerous treatment plans that eventually quit working. Like other products, such as computer processors, each new product holds promise of improvement over the ones that came before it.

Actual availability for patients is, of course…

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Categories: RA

May is National Arthritis Month, raising awareness among Americans of the variousRD Hand 051117cropped diseases and conditions that we know collectively as “arthritis.” They afflict more than 50 million adults in the U.S., and of those, more than half (about 27 million) have osteoarthritis (OA).

Rheumatoid arthritis (which I prefer to call rheumatoid disease) affects just one-and-a-half million Americans.

What’s the difference? Why should we care? Please visit RheumatoidArthritis.net to find out.

Coping With ItI turned off the dryer and reached in, burying my hands in the deep-heated load of towels that had just finished the dry cycle. Oh, that felt so good! For a long moment, I just left them there, wiggling my fingers and letting the heat sink into my achy hands …

Life doesn’t stop just because I have rheumatoid disease. It goes on–and so do we. Please read more at RheumatoidArthritis.net.

Categories: RA

As you might have noticed, I got into a redecorating mood again and gave RheumaBlog a new-ish look. This particular WordPress theme, Bloggy, will work better whether you’re reading this from your smartphone, your tablet, or your laptop or desktop computer. I figured I probably ought to bring RheumaBlog into the 21st Century, even if I had to do it kicking and screaming.

DragonSlayer

Illustration by Howard David Johnson

I’ve been skirmishing with the rheuma-dragon frequently these days. He tends to attack my hands and feet, for the most part. That damned dragon means to bring me to my knees.

I categorically refuse. I’m keeping my weapons sharp: three different DMARDs; the biologic Orencia, which I self-inject weekly; the nerve-pain medication gabapentin; Cymbalta, an anti-depressant indicated for chronic pain; an NSAID, and the usual vitamins and minerals. I’m also keeping an eye on my nutrition and portion-control; the gabapentin and Cymbalta have increased my appetite–an aggravating side-effect of both drugs–so I’ve gained weight, the very last thing I need.

My hands and wrists ache and twinge every day, but I’m still art-ing and still writing, but I’ve had to restrict the latter to writing articles for RheumatoidArthritis.net, a truly top-quality website that reaches thousands upon thousands of my fellow rheuma-dragon fighters. By doing that I’m saving my hands for my art, which I’m creating almost exclusively in a digital format, now.

I’ve found that sketching and painting via computer is a bit easier on my joints; I don’t need to use much pressure on the stylus, and my digital art program allows me to cover what would be large areas of paper or canvas with color without much effort. I’m still learning how to use this wonderfully magical new tool, but I’m having so much fun with it! Every day I learn something new about what the program–or “app,” which I think is the current correct name for it–can do. And by participating in the Twitter art challenges @AnimalAlphabets and @colour_collective, I never run out of things to draw and paint. Twitter has also introduced me to literally hundreds of my fellow artists/illustrators. I’m learning from them, as well, simply by looking at the wonderful work they post. And some of them have blogs or websites in which they actually teach. I’m an avid, hungry student!

I thought I’d share some of my recent digital artwork with you. And, while I’m not quite there yet, I hope to make some of it available for purchase one of these days soon. Prints, T-shirts, totes, mugs … we’ll see. I’m dreaming.

The art:

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Categories: RA

I plan to take part in this helpful and informative Twitter chat. Join me there! And thanks, Carla, for reminding me and others about it!

Carla's Corner

On Thursday, April 13 at 7 pm ET, Megan Starshak (@TheGreatBM) and Keri Ann Flaccomio (@keriannecdotes) will host the first #FinelyTuned Twitter chat, “Being Your Own Advocate in Treatment Decisions,” with special guest Aimed Alliance (@aimedalliance), a non-profit organization committed to improving access and transparency around quality, patient-centered health care. To participate in the conversation that evening, all you have to do is follow the #FinelyTuned hashtag on Twitter.

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Categories: RA

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