Joint Compassion

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.

Mind over Matter: The Placebo/Nocebo Effects

Placebo-NoceboThe first time I heard of the “placebo effect” was way back in the 1970s on M.A.S.H., a TV sitcom about the staff of a field hospital in war-torn Korea. The episode portrayed it perfectly: when the fighting delayed the delivery of morphine to relieve the pain of the wounded soldiers at the hospital, the doctors, desperate to help their patients, reluctantly decided to bet on the power of suggestion: the placebo effect. They gave their patients carefully scheduled doses of sugar pills, telling them that they were receiving strong, opioid analgesics.

In all but a few of the men, it worked—at least until the real analgesics arrived …

Please pop on over to RheumatoidArthritis.net to read the rest.

Wanna Help Me Out?

I’m excited!JointDecisions

I’m attending the Joint Decisions Empowerment Summit in early November. This year it’s being held in Sausalito, California alongside the American College of Rheumatology Conference taking place in San Francisco at the same time.

Sponsored by Creaky Joints and Janssen Biotech, the summit is an amazing gathering of the most inspiring, creative, caring, informed, and influential patient bloggers/advocates in the nation. I feel incredibly honored (and humbled) to be included among them. Each one of us, like you, lives every day of our lives with one or more (!!) autoimmune rheumatic diseases, including rheumatoid disease, lupus, psoriatic arthritis, and ankylosing spondylitis.

If you’d like to see a short video summing up what the Joint Decisions Summit is all about–and see clips of such influential bloggers as Rheumatoid Arthritis Guy, Britt Johnson (Hurt Blogger), Carla Kienast (Carla’s Corner), Mariah Leach (From This Point. Forward), and, well, me, all of whom attended the JD Empowerment Summit last year, click here.

This year, I’m also participating as a panel member in a Creaky Joints virtual web seminar–a webinar–during the summit on Saturday, Nov. 7 at 8 p.m. EST. The subject: “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.” If you’d like to be part of it–and it promises to be chock full of valuable information–please register here.

An open, honest give-and-take between doctor and patient is something I believe is absolutely vital to any sort of success in treating not only disease, but the whole

patient–the whole human being. After all, rheumatic diseases do affect our everything, from getting out of bed in the morning, to caring for kids, to working and playing, to our relationships both intimate and otherwise. And I believe communication is an area in which both patients and doctors need  a lot of help.

To that end, I’d like to pose some questions to all of you. Your answers will help us make the webinar both educational and–more importantly–useful and empowering to all of us.

So, without further ado (I love that word!), here are my questions:

  1. Your rheumatologist walks into the exam room and says, “how are you feeling?” Well, I don’t know about you, but “pretty good” or “fine, thanks,” pops out of my mouth automatically, even when I’m in pain. I’m so used to hiding how I really feel from others, it’s hard for me to be truthful even with my doctor. What might be a better way for the doctor to phrase that question? What could they say that would prompt you to share how you really feel?
  2. What’s your relationship with your rheumatologist like? What’s helped or hindered it?
  3. Does your rheumatologist include you in their decision-making process regarding treatment? When you make your own decisions/changes, such as stopping meds or changing/adding diet, exercise, or supplements, do you share them with your doctor? Why or why not?
  4. What physical and/or emotional barriers to your health and well-being do you face? How do you address them? What’s worked for you?

Your answers will be anonymous and enormously helpful. I can’t thank you enough for taking a few minutes to answer them in as much–or as little–detail as you choose.

I write RheumaBlog, articles and posts about RD for RheumatoidArthritis.net and other health websites, and I tweet about RD on Twitter because I want to connect with others who also have this difficult and frustrating disease. For many, many years I felt totally alone with it. Finally being able to meet and interact with others, even if only virtually, was and continues to be a balm to my soul and a light in my heart.

But more importantly, I write and tweet because I want to help others who may not have as much experience in coping with this disease as I do. I clearly remember being a rheumatoid disease newbie. I didn’t know anything about it or what to ask my doctor. I coped with dreadful, disabling pain even as I worked full time, did aarthritis_by_thevilbrain great job at being a parent to my daughter and a wife to my husband, took care of our home and all the chores associated with that, wrote and made art, and tried my best to be a social person, as well. It was tremendously hard, and I did it without having anyone who really understood the pain, fatigue, and fear the disease could cause to talk to.

But with the Internet and social media, that’s all changed. It doesn’t have to be that way anymore–we don’t have to spend our lives isolated inside this disease. Do, please, take a couple of minutes to think about and answer the questions I’ve asked above. Your answers may help someone else cope better with their RD and may give them hope and calm their fears. Consider taking part in the webinar on Nov. 7. And always, always feel free to reach out to me here on RheumaBlog, or on Twitter ( I’m @RheumaBlog_Wren), or via email: bluewren56@gmail.com.

I love talking to you.

Revisiting an Old Passion

Vintage Drafting TableI took a big step forward this week. For some time now I’ve yearned to start drawing and painting again. The talent I was born with is still with me, but it’s been decades since I’ve created anything beyond the occasional doodle. Since moving to our new apartment back in September of last year, I’ve been slowly collecting art supplies: paper, paints, colored pencils, drawing pens in the hope that I could start exercising my art muscles again, practicing and burnishing old skills, and preparing myself to learn new ones.

But until recently, I’ve had no space to spread these things out where I could work on something off and on as time and my rheuma-hands permit. Creating art does take time, and the creative urge (at least for me) is easily squashed when I’m forced to get all my supplies out and then put them all away again an hour or two later every time I want to work on something. For me, art is a spontaneous undertaking: the muse beckons or time and inclination merge, and I need to get to work. Right then, not later, not after having to set the space up yet again. Not being able to do this was frustrating.

But now, I have a Room Of My Own (ROMO). For the first several months after Mom and I moved, we had to use the big third room in our new apartment to store all of mom’s excess stuff. But that’s all now in storage elsewhere. So, after saving my pennies for a while, and comparing prices all over the place, I finally took the plunge. OnTuesday this week I ordered and paid for a beautiful, vintage-style drawing table, a sturdy, ergonomic adjustable chair, and a good task light.

UPS is delivering them today. To say that I’m excited is an understatement. It’s been too, too many years since I’ve been able to have my art supplies out where I can work on my art whenever I have the time and the urge.

Of course, the rheuma-dragon is being particularly unkind these days. He’s taken to concentrating most of his fury on my wrists, hands, and fingers, and I sort of need those to make art. But I figure I’ll just take it slow. Do what I can, rest, pace myself. Make the whole process more contemplative, and use it as a distraction from pain and frustration.

When my new “studio” is put together, I’ll post a photo.

For me, the decision to buy these artistic tools cements my determination to be visually creative again, something I can add to my writing as a way to express myself and help me cope with life’s stresses and the particular anxieties that having rheumatoid disease causes. I’m  now a step closer to making that happen.

About your bones …

Updated at end of story, Thursday, May 28:

May is Osteoporosis Awareness and Prevention Month, a fact I only learned about late last week. And while the month is nearly over, awareness of this insidious, invisible, potentially devastating and even deadly disease is important all year ’round, not just in May.

Your bones are alive. A healthy body replaces dying bone tissue with new, strong, healthy bone tissue. But osteoporosis causes the bones to lose tissue faster than the body can replace it. The resulting brittle, lattice-like bone structure breaks easily. Even something as simple and everyday as bending over or coughing can cause an osteoporotic fracture.

Osteoporosis_Infographic

A broken bone is difficult for anyone. But for the elderly or those with compromised health, it can mean catastrophe: loss of independence, permanent disability, or even death. The most common fractures occur in the hips, wrists, and spine.

According to the American College of Rheumatology (ACR), about 4.5 million women and a little over a million men over the age of 50 have osteoporosis. It’s a “silent” disease; there are no symptoms. Most people don’t know they have it until they break a bone. You’re at higher risk of osteoporosis if:

  • you’re of older age (over 30, but more commonly over 50);
  • you’re female;
  • you have a non-Hispanic white or Asian ethnic background;
  • you have lowered sex hormone levels (mainly estrogen loss during menopause and after);
  • you have a small bone structure;
  • you have a family history of osteoporosis;
  • you have inflammatory arthritis (rheumatoid disease, ankylosing spondylitis, etc.);
  • you take certain medications, such as corticosteroids;
  • you smoke cigarettes
  • you drink alcohol to excess. More risk factors can be found here.

There are some pro-active and simple steps you can take to avoid osteoporosis, or to treat it if you already have it:

  • If you smoke, stop. Smoking hastens bone loss.
  • Limit alcohol to three or fewer drinks per day.
  • make sure you’re getting enough Vit. D from your diet, sun exposure (but be wary of sunburn) or from supplements. Vit. D works in tandem with calcium throughout the body in many different ways, including building healthy bone tissue.
  • Do weight-bearing exercise regularly. It can be as simple as brisk walking for a half hour a day, five days a week, or doing gentle weight training or resistance exercises for the same amount of time. Many people mix them: walking one day, exercising the next, or 15 minutes of one, then 15 minutes of the other each day. Exercise is vital to build and strengthen bone tissue and to build and strengthen the muscles that support the joints and bones. Note: Tai Chi and yoga are excellent forms of exercise for osteoporosis. They strengthen muscles and bone, and they improve your balance, making falls much less likely.

Once osteoporosis is diagnosed, treatment is available in the form of medications, too. Some, called bisphosphonates, slow bone loss. They include such well-known drugs as Fosamax and Boniva. Other drugs may include Calcitonin or selective hormone replacement therapy.

Rheumatoid disease can cause changes in the bones that can make osteoporosis more likely to occur. It’s smart to have your bones scanned to determine you bone mineral density, or BMD, According to the ACR, “dual energy x-ray absorptiometry (referred to as DXA or DEXA and pronounced ‘dex-uh’) is the best current test to measure BMD. The test is quick and painless. It is similar to an X-ray, but uses much less radiation.”

Unfortunately, osteoporosis can sometimes lead to the need for knee or hip replacements. The American Recall Center has asked me to let you know that one option for knee replacements, the Zimmer Persona Tibial Plate, has been recalled due to issues that have forced some people back into surgery. To learn more about this, visit http://www.recallcenter.com/zimmer-persona-knee-replacement/ **

For further information, visit the ACR’s osteoporosis web page, or see the National Institutes of Health’s RA/Osteoporosis web page,

**UPDATE:  With the unfortunate weakening of the bones, sometimes osteoporosis can lead to knee or hip replacements. Be sure to always treat any surgery with care and ask appropriate questions. Do your research on the device that’s going to be put in. There has been a few recalls on these, the Zimmer persona knee recall being one for the loosening of the tibial plate. Mishaps like these can happen, which is why it’s important to get educated.

Wrist Watch

I’ve just got to tell you! I’ve reached an significant milestone in my long battle with the rheuma-dragon: wearing wrist braces.

Wow! Earth-shaking, right? I know, I know. Pretty low on the excitement scale, isn’t it. But here’s the thing: I’ve tried using wrist braces in the past, and I’ve always ended up taking the miserable things off within a few hours. Purchased at a drugstore, in the smallest adult size available, they were nevertheless too big, heavy, clunky, and uncomfortable. Within a few minutes my aching wrist was aching even worse. What’s more, it wasn’t long before the stiff brace began chafing the skin around my thumb where it meets the palm, the top of my hand at the knuckles, and where the brace ended on my forearm. Finally, the

AN IMAK COMPRESSION GLOVE with an elastic support bandage helped with wrist pain, but wrapping and unwrapping was a PITA.

AN ISOTONER COMPRESSION GLOVE with a sticky elastic support bandage helped with wrist pain, but wrapping and unwrapping was a PITA.

rigid metal bar inside the brace, meant to prevent my wrist from bending too far, in fact merely impeded any attempt at normal movement.

It was all very frustrating.  Having some sort of wrist support when my wrists flared would have been a relief, but after trying a couple of different brands, I gave up. In the end, I just wrapped my hand and wrist firmly with an elastic support bandage. It was cumbersome and came undone easily, but it was better than nothing.

So you can imagine how intrigued I was when I ran across the Wellgate for WomenWellgate for Women PerfectFit Wrist Support PerfectFit Wrist Support on Amazon.com. The company claimed these braces were light and slim, made with the slender contours of a woman’s wrist in mind. Furthermore, the company claimed they were actually comfortable.

Unconvinced, I added them to my wish-list. They were a bit pricey–$18.99–and I needed two, since I never knew which wrist was going to act up. Having been burned on this type of product in the past, I wanted to think about it before I spent that much.

Months passed. And then a couple of weeks ago I was glancing through my Amazon Wish List again. My wrists have been giving me particular hell over the last couple of months, so I pulled up the info on the Wellgate braces again. They were still tempting, but …

… Oh … oh, wait!

The price had dropped considerably. I almost couldn’t afford not to get them! And they were rated four-and-a-half stars out of five, with more than 900 reviews.

So I took the risk and ordered braces for each hand. I figured if they didn’t work out I’d just send them back and get a refund.

I WEAR MY Wellgate for Women PerfectFit Wrist Support, Left Hand, with my Imak Compression Glove. I have a brace and glove for the right hand, as well.

I WEAR MY Wellgate for Women PerfectFit Wrist Support, Left Hand, with my Imak Compression Glove. I have a brace and glove for the right hand, as well.

Well, no way that’s gonna happen! You’d have to shoot me to get my new wrist braces away from me now. I mean, I. Love. These. Things! They’re everything Wellgate claims they are: soft and comfortable (made with memory foam), slim and form-fitting, plenty of support, lightweight, and they fit neatly beneath long sleeves. They don’t rub, cause hot spots, or chafe my skin. They’re also pretty decent-looking for something as dull and utilitarian as a body-part brace. The artist in me approves.

But best of all, these braces work. Wearing them lowers my pain levels. There’s a stiff support sewn into them, but it isn’t hard and obstrusive. It’s gentle. The braces are fully adjustable for tightness, too. The part around the thumb and palm fits close, with no gaps, and it feels good and secure. The only time I really notice I have them on is when I try to bend my wrist more than 10 degrees in any direction. They stop the movement gently but firmly, without raising my aggravation meter.

Finally, the materials they’re made of breathe. My skin got hot, damp, and sticky in no time when I wore the old braces. These don’t, though–and that’s even when I also wear my Imak or Isotoner gloves (for the extra compression and warmth). The Wellgates seem to be extremely well-made, too, with secure stitching and high-quality materials. I’ll let you know if they start falling apart, but honestly, I don’t expect them to. They’ll probably outlast me.

Wellgate didn’t ask me to promote this product, and I’m not getting any sort of payment or reward for doing so from them or anyone else. I just wanted to pass along this very good news about their very, very good wrist supports/braces to people who I know will really appreciate it. 🙂

Pain and honey

I went out to lunch with my Mom yesterday. Unsure of what we wanted to eat, we ended up going to old town Folsom (yes, the same one that’s named in the famous “Folsom Prison Blues”). After considering and rejecting an American café-style meal, a heavy European meal, and spicy Mexican food, we decided upon Hop Sing’s Palace and had a delicious Chinese lunch for a price I hadn’t seen since the late 90s. Mom even had a glass of wine.

Afterwards we wandered up and down the raised, Old West-style boardwalks, browsing the gift and antique shops. The day was cloudy and cool, very pleasant. There were quite a few people out and about, which surprised me until I remembered it was Veteran’s Day, and anyone with a government job was off work for the day.

It was really nice – except that I couldn’t figure out a way to carry my handbag without making my hands cry. I ended up hanging it on my forearm (the straps aren’t long enough for my shoulder). It worked, but made me feel awkward and clumsy as I moved up and down the narrow aisles in the tiny shops, trying desperately not to knock anything over.

I was getting tired and cranky and trying not to show it.

It was in the last shop we visited that I saw a small display for a line ofbaklava_close_up hand and body creams made in Idaho. I’m not usually real interested in hand creams – most of them make my hands and fingers feel greasy, which I hate. But my hands, sore as they’ve been, have also been very dry and itchy lately. So I tried one of the samplers.

You know how those singular “moments” can sneak up and just surprise the heck out of you? Well, this was one of those for me. The cream, made with glycerin and an eclectic combination of flowers and herbs, was warm and soothing on my achy hands. As I rubbed it in, massaging them gently, it sank into my skin, so it felt silky and soft, but not greasy at all. For a brief time, the world slowed down as I took care of my hurts and the scent of the hand cream rose into my nostrils. Honey. It smelled like honey. It smelled like warm baklava tastes.

Well, that was it. I bought a tube of the stuff. I’ve rubbed it into my hands three times since yesterday, and each time it felt heavenly, though the sweet scent is a bit more overpowering here at home than it seemed in the shop. That’s all right, though. It beats the scent of Deep Heating Rub!

My hands are swollen and painful again today. I haven’t gone to the gym since last Friday. I can’t face using them to push and pull and brace myself on the exercise machines, though I have done some walking. But man, I’m just feeling flattened – I guess from not sleeping well and from the continuous, unrelenting pain, which is making me worry. I also feel guilty for letting the rheuma get me down and keep me from doing things I know I should do. This is not good.

The new meds my rheumatologist prescribed for pain and insomnia haven’t arrived in my mailbox yet. I hardly dare hope they’ll be there today when I check, but I do have a little more hope for tomorrow. And I’m hoping, too, that this awful, low-level but unrelenting flare will ease off soon. Some days I just don’t have the wherewithal to stay upbeat, hard as I try.

Yeah, I know. Stiff upper lip and all that. Nothing that a good night’s sleep won’t help! (That’s an absolutely truism, that one.) Well, I’m working on it, OK? But for the moment, I’m going to rub honey-glycerin cream into my hands and wallow. I’m sure I’ll feel better tomorrow.

Always do.