Tag Archives: Tools

Wanna Help Me Out?

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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.

Out of a Table-sized Box …

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… comes an art-sized table.

When I started putting my new drawing table together on Saturday, I discovered that it would require screwing in about a thousand screws. My hands just aren’t up to that, unfortunately. So, after a bit of thought, I decided to head to the hardware store to buy myself (hopefully) an inexpensive electric screwdriver.

An hour or so later, I had one. Made by Black & Decker, and only $20! Yay! I headed home, opened the box my new tool was in, and came to yet another dead stop. It had to be charged for at least 16 hours before use. So, shaking my head, I plugged it in and put off building the new table until Sunday. Disappointing, really.

Sunday, mid-morning, arrived. After reading all the directions, it was clear I was going to need some help, even though I had a magic electric screwdriver. Along with screws, there were Alan wrenches involved, and of course, balancing one piece on or next to another other for joining by screws and Alan thingies. So I enlisted Mom. To my surprise, she was happy to help!

And so, two hours later, after much discussion, a little arguing, occasional grunting, much laughter, a few cries of dismay, and finally, an exhausted high-five, we were done. My drawing table was ready to use!

I cleaned up the construction mess, unboxed the task lamp, and attached it to the table. Both are “vintage” styles, and they look great together. Then I laid out my art things and a work-in-progress that I’d had to stop working on when we moved back in September, and as a final touch, put my Laughing Buddha at the top of the table, overlooking everything. Gazing at it made me smile. There were other chores to take care of Sunday, though, so no opportunity to use it all, yet. But Sunday night I went to bed a sore but happy camper.

Today, I had a writing assignment to complete, but tomorrow I’m planning to give the whole day over to art.

My hands are flaring painfully as I write this, and I’ve been alternately icing and heating a flared left shoulder. Still, I’m hoping for a restful night’s sleep tonight, and a mild-pain day tomorrow.

Here’s my already-beloved art-making place:

New Drawing Table

Revisiting an Old Passion

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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.

Wrist Watch

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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. 🙂