RheumaBlog

Same dragon, different day.

A smart, serious essay on the continuing “opioid crisis” and its terrible effects on long-term pain patients, starting with how it affects the writer. But Charis doesn’t leave us without solutions. She’s spelled a heaping handful of them, all of which require simple, level-headed, and compassionate action from the medical and insurance industries, and common-sense action from our government. Well worth a read–and a share with others, if you can.

BeingCharis

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty…

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Categories: RA

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Just a little mental drenching …

I’m a winter-person. I’ve always loved chilly weather and wild, rainy storms. Even after my rheumatoid arthritis (RA) diagnosis 30 years ago, when I lived in cold, dark, wet Northern Germany, I loved the winter weather. My joints didn’t care whether it was sunny or sleeting – they flared either way.

These days, I live in Northern California and I still have RA. Winters are short here, but now, when the barometer changes abruptly and the sweet, much-needed rain falls, my joints hurt more than usual. I love living in Northern California anyway.

But there’s another sort of rainy-season, one that can be much harder to cope with at times. It’s the one that sometimes comes when my RA symptoms worsen. This dark season exists only in my mind. My mental barometer shifts, it gets dark and dreary, and the soul-rain falls. And falls …

… and falls. It feels like it will never end.

When the soul-rain comes, I struggle more with my RA, resenting each joint twinge or throb, each bout of no-reason-for-it fatigue and malaise. My old, die-hard optimism fades as my mood plummets. Why me? I wonder. Why did I get this stupid disease? What did I do to deserve this?

And finally, how long will this last? Can I live with this forever?

It’s a fact: coping with an invisible disease like RA ain’t for sissies. It’s hard. It forces us to live with its often-invisible symptoms nearly every day of our lives, whether we like it or not. We might have stiff, aching joints, and feel fatigued, exhausted, or ill, but we still somehow get up each morning and go off to work or proceed to whatever we need to do each day. RA doesn’t pay the rent, buy the groceries, or keep the house tidy. That’s up to us no matter how rotten we feel. And because we may not be comfortable talking about how we feel to our employers or to others, we often bear our frequent pain alone, in stoic silence, and without their knowledge or support.

So really, it’s no surprise when the soul-rain drenches us. We can’t control it any more than we can stormy weather.

But like the weather, soul-rain storms always clear up, too. For me, sometimes it’s in a matter of hours, but other times it can take days or even weeks. Eventually, though, the storm passes, even if the cause—my RA—doesn’t, I just tell myself tomorrow will be better. If it’s not, then maybe the next tomorrow will be, or the next and so on.

I don’t blame myself for an occasional rainy-day-of-the-mind, but I don’t just sit around just waiting for them to lift, either. I use several tried-and-true tools to make enduring the soul-rain—and the pain—easier. Sometimes, these tools can even encourage the storm clouds to move along, so…

… Move yourself. If you’re able, step outside a few times a day and take a brisk walk. It doesn’t have to be a long one. But just the act of changing your surroundings, moving your body, breathing deeply, and taking in the sights and sounds around you can help lift your spirits. Notice the flowers, the trees, the changing colors of the season, the birds. Greet anyone you pass with a smile, and while we’re talking about that …

… Smile. Sure, I know. It’s tough to do when you’re feeling down but do it anyway. Turn up the corners of your mouth. Go to a mirror and practice smiling. Seek out others who smile a lot and smile with them. Watch a funny movie, or read a funny book or website and laugh out loud. I know it sounds nuts, but there’s real science behind this advice: studies have shown that when the muscles of your face curve your lips into a smile, your brain releases chemicals that help, physiologically, to lift your mood.[1] So, do it! Smile—even if it makes you laugh—and then …

… Distract yourself. When we hurt, it’s easy to fall into deep puddles of despair. The best way I’ve found to wallow out of them is to distract myself. There are lots of ways you can do this: read a good book; listen to your favorite music with your full attention; watch an absorbing movie or TV series; bake some cookies; fix something that needs fixing; spend time on a favorite hobby; or try a new one. Anything that takes your mind off your pain and discomfort will work!

… Unclutter your head. The easiest way to do this that I’ve found is to allow myself to simply sit still and be present, right here, right now, and not lost, wandering and alone, in some frightening future, near or far. After all, there is only now. The past is over. The future is unknown and uncontrollable. So, for a minute, or five, or more if you can, first recognize your pain. Note carefully where it is and how it feels. Accept the fact of it. Then move your attention elsewhere: to your heartbeat, to your breathing, to how your hair feels as it grows. If your pain or some other thought or worry comes to mind, notice it, then gently push it back into the ether. Bring yourself back to the present. Focus on the air flowing over your skin. If your tongue is clamped to the roof of your mouth, relax it. Breathe. Be. The simple trick here is to put your mind at ease and notice the small gifts the world has to offer. Once you’ve mastered these small practices, repeat them whenever you get a chance, and you might notice a break in your mental storm clouds—and the glimmer of hope that comes with it. Again, this is something I found that works for me!

… Reach out to others. In my decades-long journey with RA, one of the most important things I’ve learned is that hiding my soggy mood from my family and friends for more than a day or two just serves to double or even triple-down on my misery. Not only do I resent the pain and other symptoms my RA is doling out, but I resent that the people closest to me haven’t even noticed the raincloud that’s following me around. Now I’m really in the doldrums. Don’t they even care? Of course, they do. But they have their own problems, worries, and lives. Like it or not, none of us are telepathic, so it’s unfair for me to expect my family and friends to be tuned into me all the time. But how do I tell them how bad I feel? Won’t they think less of me? That I’m just being whiny? Here, again, the best way forward is the shortest way. “My RA is making me feel sorta low,” I say. “I get so frustrated and hopeless sometimes! I could really use a hug/a listening ear/a pep-talk/all of the above.” Talking it out means airing it out. People who don’t live with this disease 24/7 can have some surprisingly promising ideas on new ways to deal with it. Or, if nothing else, they might offer to keep you company as you take a walk, watch a movie, or prepare a meal. Another thing that can help? Listening to their problems in return. Everyone needs a sympathetic ear now and then and hearing you are not the only one with bad days helps.

 … And a couple more: If you’ll share this post with others in your life or online, it might help improve their general understanding of invisible illnesses—RA included—and about the importance of emotional self-care. And you can check out the Joint Decisions Facebook page at https://www.facebook.com/JointDecisionsRA for more information and resources about living with RA.

Used alone or together, these tools work for me when my RA and my emotions combine into the soul-rain. I hope they’ll work for you as well. Finally, remember that your doctor can help, too. Talk to them about these things. There might be a new treatment for your RA you haven’t tried yet, or you can ask about other practices that might help lift your dark, dreary mood. Together with your doctor, you will find the best way out of the soul-rain and back into the sun.

Note: This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. Janssen compensated me for the time I spent collaborating on content for Joint Decisions, but all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

[1] https://www.psychologytoday.com/blog/cutting-edge-leadership/201206/there-s-magic-in-your-smile

Categories: RA

Carla's Corner

I’ve been seething since I read Prime Therapeutics’ October 17 news release asserting that patients are being prescribed biologics outside of American College of Rheumatology (ACR) guidelines. The referenced Prime Therapeutic reports assert that patients are being switched from conventional DMARDs to more-expensive biologic treatments before the DMARD therapy is given a proper chance to work (as much as 24 weeks – or almost six months). The report concludes this has caused an unwarranted higher total cost of care for RA patients. The conventional first-line DMARD is methotrexate (MTX) and the triple therapy of MTX/hydroxycholoquine/sulfasalazine was also discussed.

For those of you who are not familiar with Prime Therapeutics, they manage pharmacy benefits for health plans, employers, and government programs including Medicare and Medicaid. Their opinions affect more than 20 million people. For many, this is the entity that determines whether or not their prescribed medication treatments are approved and…

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Categories: RA

My dear friend Carla’s heart is as big as Texas:

Carla's Corner

The Global Healthy Living Foundation (www.ghlf.org) has sent a list of links below that can provide assistance to those needing medical assistance in the wake of Hurricane Harvey. In addition, this link (Take Action Now) will provide you with the phone numbers and talking points for the governors of Texas and Louisiana to ask them to request the U.S. Department of Health and Human Services (HHS) activate its Emergency Prescription Assistance Program (EPAP). This program will ensure that eligible patients can receive their desperately needed prescriptions at no cost from participating pharmacies.

As a resident of Dallas, we were largely unaffected by the Hurricane, but we are now receiving thousands of evacuees as people are able to leave Houston for safer ground. These people need all the help we can give them.

Thanks for anything you can do.

Helpful links to share:

  • Infusion Center Locator (

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Categories: RA

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.

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