RIP memorial demitasse, or the perils of living with autoimmune arthritis

Assessments used to measure the progression of autoimmune disease—like the one I live with—often include questions about how symptoms interfere with daily life. When arthritis afflicts the small joints of the hands, sufferers like myself experience the perils of managing common fragile objects.Starbucks wish you were here ornament demitasse - 3

Case in point: the demise of a demitasse cup I used every day.

This cup was a gift from my mother who passed away in 2019. Today, I fumbled it while loading the dishwasher. It cracked when it hit the counter, one corner crumbling to bits, then continued on to finish shattering against the tile floor.

R.I.P. Starbucks “You Are Here: Oregon” demitasse cup!

Starbucks wish you were here ornament demitasse - 1

My favorite vessel for my daily shot of espresso joy is hardly the first victim of my less-than-nimble MCP and PIP joints.

There’s a particular glass pitcher I use to refill my beloved Zojirushi countertop hot water boiler.

Because my hand slipped perfectly between the pitcher’s handle and body when my joints weren’t swollen, it was my yardstick for physical manifestations of arthritic flares. Swollen, the knuckles—where the base of my fingers meet my hand, or, less often, even the middle joints of my fingers—were too thick to slide into that same space. It made me feel less crazy to have confirmation that my symptoms were real,* physical, and not “all in my head.”

One clumsy morning, I bashed the handle off the pitcher as I maneuvered it between faucet and kettle. Somehow, I managed to rap the fragile handle against the edge of the counter as I lifted it out of the sink.

The result is a far less useful, slightly sharp nub on an otherwise pretty jug:Patterned clear glass water pitcher with top stub only of broken off handle

It was such a lovely pitcher, I still use it—though with even more care—for the same task. The vessel just can’t serve its secondary medical alert function anymore. Also, it is rather trickier to keep a hold of, so I tend not to fill it full to keep the weight manageable.

In the grand scheme of things, these are trivial losses. My hope in sharing this story of small failures is to illuminate—for those fortunate enough to enjoy fully able bodies—another of the small daily battles waged by someone living with even minor infirmities.

They take a toll. They have a cost.

Living in a world designed and built to be adequate to your needs—which is the happy reality healthy people inhabit—is extraordinarily convenient, yet easy to overlook until some change in one’s own status lays bare every discrepancy.

* For many patients with conditions that can’t be definitively diagnosed by simple tests like blood work—especially when the complainant is a woman or a person of color—it is common to feel, if not to be, dismissed as a mental patient instead of acknowledged as the unlucky sufferer of a valid physical ailment. A recent BBC story describes how even physicians with disabilities are greeted with suspicion by the medical establishment.

BraceletStreet offers accessible necklace manageable by arthritic hands

I like to wear a little jewelry even when I’m “only” visible to my household. The pandemic hasn’t affected my daily wardrobe at all!

Rings, watches, and most bracelets feel to me as if they interfere with my daily activities, but earrings and necklaces make me happy. Adding a little sparkle—and even more color—to an outfit is something I do for myself, not to show off or impress others.NZ capsule wardrobe jewelry - 1

Yet another annoying side effect of systemic arthritis is the sometimes unpredictable stiffness in my fingers that makes tiny clasps difficult to manage. It’s no accident that all the earrings in my photo above are hooks that don’t require attaching itty bitty backs!

Add slightly paranoid tendencies to even mild physical disability, and I can end up feeling frantic* about a necklace that I can’t get off when I want it gone. This scenario triggers my claustrophobia, in fact.

For this reason—and because my only simple, black vinyl? pendant cord c. 1994? recently broke, leaving me with no aesthetically pleasing option for wearing a favorite amber bead—I went looking for a replacement with an easier to manipulate clasp. I wanted to upgrade to a thin, genuine leather strap with a magnetic fastener.

Et voilà!

Bracelet Street 15" black leather 3mm necklace with magnetic claspI turned to Etsy, though I often struggle on that site to identify actual self-employed artisans vs. foreign outfits with unknowable labor practices. I ended up buying two leather necklaces with magnetic fasteners made by Bracelet Street USA, a woman-owned business in Kentucky if I’m reading their About page right. I’ve had no personal contact with this company aside from making the single online purchase.

First, allow me to admit that I feel like an utter fool for having waited this long to seek out more manageable jewelry clasps. Obviously, it could be costly or impossible to retrofit a large collection of mostly inexpensive, costume jewelry, but there was nothing preventing me from making this useful discovery except my own lack of attention.

Sometimes, the steady barrage of failures that come from living with autoimmune disease can prevent me from even trying new solutions that turn out to be easy fixes.

When everyday life confronts you constantly with “trivial” activities you can no longer manage for yourself, it is easy to become disheartened and just give up on stuff. This sometimes applies to things you love. Even silly little victories—like wearing a favorite pendant—enhance the texture of life’s fabric, and are worth pursuing.Pendant necklaces: amber bead on black cord, ammonite fossil pendant on brown cord, blue stone on bronze cord

For those with fully able bodies, some of the visible manifestations of the Americans with Disabilities Act (ADA) can seem excessive or superfluous—“too many” empty handicapped spots in an otherwise packed lot, or the lift at the public pool that a healthy observer never sees used—but the reality is that, for those who have been cut off from so many common daily tasks, accommodations like these make the difference between feeling welcome to participate in the world at large…or not.

My new necklaces aren’t going to suddenly empower the disenfranchised or fundamentally change the world, but they do look nice, work precisely as they should, and offer me the dignity of doing one more thing for myself. That makes the purchase money well spent.Etsy order confirmation for two 3mm round leather necklaces with magnetic clasps

I ordered two magnetic clasp, 3mm diameter necklaces, one a #25 Natural Black (15 inch) and the other a #3 Bronze Metallic (18 inch), paying $26.56 including tax. I was sent a third (18 inch Metallic Tamba) for free as an unexpected “gift with purchase.”Bracelet Street 18" leather cord, magnetic clasp necklace with 3mm diameter in Metallic Tamba color

I’m assuming such little additions are par for the course with this company. Bracelet Street could have had no way of knowing I am a blogger** who might write about the purchase. I didn’t even login to my existing Etsy account since I was accessing the site from my phone instead of my desktop and I couldn’t remember the password. I wouldn’t have seemed like a special customer of any sort.

Bracelet Street USA shipped their products in sufficient, simple packaging that protected what was inside without creating too much superfluous waste. Each necklace came in a labeled mini zip top plastic pouch. I save these for use to keep earrings separate and chains untangled when I travel, so they will be re-used.

The inclusion of a hand-written thank you note made an impression on me, and very much increased my desire to share my positive experience with the company. I appreciate a human touch to my purchases, especially when I’m buying hand-crafted items online. I always hope I’m supporting small businesses with satisfied employees, but it can be so hard to tell who you’re doing business with on the web.

If you plan to wear an existing pendant with one of these magnetic clasp necklaces, be aware that I had to have a larger ring added to my amber bead in order for it to fit over either end of the Bracelet Street USA 3 mm leather necklace. The non-opening end of the simple metal “springring” clasp on my old vinyl cord was smaller.

Fortunately for me, my mother-in-law is a hobbyist jewelry maker, so it was easy for her to add a larger link to my pendant. Actually, I believe she gifted me all three of the pendants featured above on my new Bracelet Street necklaces. If, like me, you are buying magnetic clasp necklaces due to a lack of dexterity, you may need a friend or loved one to help you attach a larger bail to some of your own pieces to make them compatible with these thicker fasteners.Close up of Bracelet Street magnetic necklace clasp slot end

I would also like to add that the little bump or nubbin on the insertion side of the fastener is not a button requiring fine manipulation. I wasn’t sure how it worked when I first looked at it. The two ends of the magnetic closure will “snap” together on their own due to the magnet’s attraction, but you aren’t quite done when it does! A slight twisting motion slides the nubbin into the slot on the other side. This seems to provide extra security to what could otherwise be a “breakaway” clasp.

Breakaway jewelry might be ideal protection if you’re operating a lathe, but it’s kind of a bummer when you’re wearing the pendant great-grandma carried with her from the Old Country.

With a lightweight charm, I believe you could get away without the gentle twisting required to get the clasp fully closed, but I did have a heavier pendant (the ammonite fossil visible in my photo above) fall off into my lap before I’d quite mastered the fastening process. Since I learned to fully secure the clasps by twisting, this hasn’t happened again. To be clear, though, I rarely wear heavy jewelry as it exacerbates the discomfort from my systemic arthritis.

If you’re looking for a simple necklace that can be put on and taken off in spite of mild- to moderate-dexterity issues in your hands, I recommend those sold on Etsy by Bracelet Street USA. They are fairly priced, functional, and the company really seems to care about pleasing its customers. Each has a clean, simple aesthetic—appropriate for anyone, masculine or feminine—with 36 colors available in lengths ranging from 12 to 26 inches. I can’t speak to longevity after just a couple of weeks, but my initial impression of the three necklaces in my order is that they offer good quality for the price.

* Even my kids have been subject to my sudden demand to “help, help, help me get this off before I have to start yanking on it!” Since some of my jewelry was my departed mother’s finer stuff, ripping it apart would be less than ideal…

FYI, “Metallic Tamba” as a color name doesn’t mean much to me. I’d describe the shade as a multi-hued, warm-toned, mostly dark brown metallic melange

** Frankly, I’m also not a very significant blogger, so I’m not sure “knowing who I am” would have any effect on the way any merchant would treat me!

I had to look up the proper name for the round, metal circular fastener with the tiny lever you have to pull with a fingernail to open it, pulling an itsy bitsy wire out of the center of the hollow hoop. The internet told me it is a springring clasp, invented around 1921.

One viciously toothed object is key to conquering the kitchen with arthritis

If my parents hadn’t bought a dowdy condo with an out of date kitchen configured for an elderly lady, I never would have discovered the single most useful object that empowers me to help myself to prepare food with my arthritic hands.

V shaped wooden jar opener screwed to bottom of upper cabinetIt’s a jar opener with a double row of teeth that might put a very small shark to shame. I found a modern one called a Gator Gripper online at SMC Woodworking in 2018. At $16.95 + shipping, I rate it a great bargain after many months of use.

There’s no brand name on my parents’ original jar opener, but it was screwed into dark brown stained cabinetry circa 1970. It could have been made by a friend or it might be a commercially manufactured object. The previous owner of the condo lived there for decades and the unit wasn’t sold until after her death. I’m just grateful that the lady bought this magic gripper because it makes any screw top a breeze to open, regardless of hand strength or manual dexterity.

Unless weakness of the hand makes it necessary for one to hold a jar with both, most people can easily open jars single-handedly with the Gator Gripper. Better yet, its design makes tiny lids as easy as large ones to grip. I’ve opened vitamin and nail polish bottles with this thing as well as water bottles, sauce jars, and home-canned mason jars. It works equally well gripping plastic and metal tops.

Opening bottles and jars safely before I remembered the probable burst of pain with which my hands would react was one of the longest lessons it took me to learn* when I developed autoimmune arthritis. I might be feeling fairly well, but the grip and squeeze and twist of a sealed jar almost always leads to lightening bolts of shock up multiple fingers.

Coffee bottle, Chameleon Cold Brew brand

Coffee trapped inside a glass prison!

Coffee bottle with screw top wedged into jar opener’s gripping teeth

The fight for liquid freedom!

Coffee bottle with lid off

Success for coffee lovers everywhere… in my kitchen

My husband has a more equivocal relationship with the jar opener than I do, though he’s the one that actually ordered the Gator Gripper for me. Now that one lives in our kitchen, he has trust issues. DH recognizes that I prefer being able do things for myself, and that being unable to get past a step as trivial as “open the jar” when cooking is demoralizing.

Then again, the jar opener does employ very sharp teeth to do its job, and DH is something of a pessimist. The design of the product is an open, inviting v-shape. It hangs, welcoming, beneath the upper cupboard near the fridge where I usually stand when I’m preparing food.

I see the jar opener as welcoming my tightly shut twist-off; DH sees it as welcoming unsuspecting fingers, hungry for human blood.

“Someone could cut himself,” my husband says doubtfully. “There’s nothing to prevent you from sticking your hand in there and slicing open a finger.”

It’s true. This is a grown up’s kitchen implement. Then again, I see very few of my visitors patting or probing the undersides of my upper cabinets when in my kitchen.

The Gator Gripper’s position more than four feet above the floor and over a countertop workbench is enough to ease my mind that visiting toddlers are unlikely victims. My own kids are plenty tall enough to reach it, but also plenty mature enough to understand that sawtoothed blades and phalanges don’t mix.

Large knife block full of Cutco knives

Warning: Knives are not toys

I figure, in a kitchen with a knife rack in plain sight, the jar opener represents only a minimal additional risk.

My parents sold their condo and moved back into a house when my mother couldn’t make the adjustment to a downsized life. They unscrewed that jar opener and brought it with them to their new home, however, and I’m grateful that they did.

There are minor renovations I would enjoy making in my own kitchen, but I can’t imagine any scenario in which I’d live without my jar opener going forward, save, perhaps, for the abolishment of all screwtops by executive order.

And, even then, I’d probably keep my trusty Gator Gripper tucked away under that cabinet just in case. After all, someone could show up with contraband. Prohibition taught us that plenty of bottles make their way around even after the most teetotaling fiat.

*The other contender for “why can’t I make this adjustment?” was opening heavy commercial doors. I’ve gotten much, much better and trained myself to always use the power/disabled access button where available, and I almost always remember to turn around and push doors with my back instead of using my hands and wrists now, but making this a habit took several years.

“Accessible” space differs for every disability; hand washing with arthritis requires warm water

Before one has experienced a measure of disability, it can be easy to dismiss accessible space as a one-size-fits-all inconvenience to the rest of the world.

No parking space for you, but six empty handicapped ones? Sigh.

You make do, go about your day, and think little more of it.

Even I, living every day with an array of symptoms, still regularly find myself drawn up short when some mundane activity suddenly presents an obstacle I didn’t anticipate.

This winter, a frequent such shock was public restrooms that lack hot water for washing.

Lavatory sink in primitive restroom with only one cold water faucet

I have arthritis which troubles primarily my small joints, i.e., hands and feet.

It’s pretty easy to manage one’s feet in public. Socks and shoes keep them warm and protected, though walking long distances raises challenges. These are foreseeable challenges, however. I can plan for them.

Hands, however, are another story. Grabbing, twisting, the hard jabs required by the ever-more-ubiquitous touchscreens replacing human clerks… Life can be hell on an aching hand.

I become more grateful every day for the power doors that open themselves for me.

For those that don’t require a powerful push with aching fingers to activate, I mean!

Add to those unavoidable discomforts the regular painful shock of a blast of ice cold water in a public lavatory. The pain can be momentarily crippling. The effect of washing in very cold water can persist via stiffness and discomfort for the next couple of hours.

I have the option of not washing, of course, but that’s disgusting. It also means I’m selfishly exposing others to nasty germs until I find a better option for a thorough hand washing. Hand sanitizer is no substitute for soap, warm water, and sufficient agitation.

I expect primitive facilities without hot running water at parks and campgrounds, but the specific washrooms I can recall with this problem from this winter include my sons’ pediatric dental office and a Starbucks in the densely developed suburban community where I live.

There’s no excuse for medical offices’ or chain restaurants’ premises to lack warm water in public restrooms. It lowers hygiene standards for everyone, and presents an actual health hazard to some of us with special needs.

Do building codes allow public spaces to offer these sub-standard facilities? If so, how and where do I report them? If not, is local government and the permitting office the correct level at which to agitate and ask for better?

With tiny, on demand water heaters available to fit beneath any sink, this isn’t a technical problem to overcome. Instead, it is a question of what we can reasonably expect in a developed society that likes to claim superiority over the rest of the world.

American flagUniversal access to clean hands seems like an easy achievement in the United States of America!

Key Straps save my stuff: how Tom Bihn’s bags keep arthritic fumblefingers from ruining my day

In other posts, I’ve referred to the way Tom Bihn bags often make my life better. I want to expand upon that point lest I sound like a mere company shill.

Tom Bihn PCSB and Cafe Bag with Sunday Afternoons hat on hotel desk

Tom Bihn bags and Sunday Afternoons hat

Today I’ll talk about how one “key” feature of this particular brand helps me stay organized and deal with the ongoing issues of a chronic medical condition. I’m talking about removable Key Straps that can be attached to O-rings integral to Tom Bihn bags and many other anchors on luggage or in hotel rooms.Tom Bihn Clear 3D Organizer attached with Key Strap to handicapped rail in hotel bathroom

Key Straps are the “key” feature

I carry a Cafe Bag ($70, size: Medium, color: Original/black Halcyon with Wasabi lining) almost every day, sometimes swapping it out for a Travel Cubelet ($40) or my Packing Cube Shoulder Bag (PCSB, $34) when I travel light. My Cafe Bag is generally fitted out with six separate Key Straps at once, each serving a unique function.

Tom Bihn yellow Key Strap on Cafe BagKey Straps ($5) come in 8-inch and 16-inch lengths, and are currently offered in seven colors. Many of mine are the older style, sewn from folded Dyneema/Halcyon nylon fabric. Newer Key Straps are made of webbing instead. Key Straps come in two varieties: with a snap hook on both ends, or a snap hook on one end with an O-ring on the other.

Additional Tom Bihn accessories that go virtually everywhere with me include:

  • Clear Organizer Wallet ($17) for cash on Wasabi TB Key Strap
  • Coach purple leather card wallet on Steel/grey TB Key Strap
  • Solar/yellow TB Key Strap left empty for… my keys!
  • Pocket Pouch ($10) in Aubergine with Wasabi lining for lip balm attached with its own integrated clip
  • Eagle Creek pouch on Ultraviolet TB Key Strap
  • Aubergine Small Q-Kit ($18) on Iberian/red TB Key Strap for medication
  • Wasabi Mini Q-Kit ($15) on Wasabi TB Key Strap for electronic charging cables and earbuds
  • Clear pouch with red back for paper and longer objects I want to carry, often including a checkbook, a full length emery board (nail file), or a passport

I attach non-Bihn items by various methods. You can see the Key Strap snap hooks attached to a key ring on my card wallet and a fabric loop on my Eagle Creek purple pouch in my detail photos. The integrated O-rings and detachable Key Straps are tiny things that make a tremendous functional difference in my Tom Bihn satchel, but these accessories play very nicely with other brands.

By designing modular pockets, pouches, and parts for the end user to attach or not with separate Key Straps, every bag can be customized precisely for its specific purpose. This works really well for me.

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