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.

No resolutions, but I’ve defined goals for 2021

Making New Year’s Resolutions has never been a habit of mine. Nevertheless, I do have goals.

I schedule time to re-visit my values, asking myself whether the actions I’m taking in my life align with what matters to me the most. The most natural time for me to do this is at the beginning of the secular (January) and the Jewish (Nisan) year.

Here’s a redacted version* of some things I will doon purpose, and with intent—in 2021.2021 goals in a table, listing intellectual, financial, physical, relationship, and career objectives

Since I’m not a finance blogger, I’ll keep the details of my personal economic goals to myself redacted with green lines. The pink strikethrough covers a commitment to enhancing a particular relationship.

Really, what I’m trying to share here is an approach that I have found helpful for working toward what some might call my Life Plan. I aim to write down specific, achievable, list-tickable items that I know are within reach, but which will move me, inexorably, toward loftier ambitions.

I consider what I want from my life in a few key areas:

  • intellectual,
  • financial,
  • health,
  • personal relationships,
  • and career/vocation.

The bigger goals might be described as:

  • I will continue to exercise my mind until I’ve lost it.
  • I want financial security for myself and my family.
  • I will nurture my physical body.
  • Human relationships are fundamental to my enjoyment of life.
  • Though I’ve opted to stay at home, raising my children, I still have a role in the wider world which I’m expressing via this blog.

Resources abound with other, far more specific approaches to success. I’ve read books that will tell you how many “core values” you can/should have and how to cultivate them. I’ve seen Warren Buffet’s advice on narrowing your focus to just a couple of aims in an article about being a better leader.

I’m not a guru, and I can’t change your life. Only you can do that! Thanksgiving give thanks - 1

I am, however, a person who finds something to be grateful for every day. I believe that paying attention to what you want—and why—is key to happiness.

I could be happier; I could be more successful. I’m satisfied with who, what, and where I am, though, so I’m sharing my simple process in hopes of spreading some empowerment toward self-acceptance.

happy faceFor me, a short list of targets I know I can meet provides fuel for my willpower engine. If you feel you’ve “failed” at New Year’s Resolutions in the past, consider trying this method for yourself. Little victories may also prove to be your catalyst for bigger wins.

The head of the Jewish year also happens to align with the start of the academic calendar and all of its associated beginnings. As an inveterate nerd, I doubt that even the graduation of my children from school will break me of the habit of seeing autumn as the time to begin new projects.

* …just in case anyone is wondering just how much detail I, in particular, choose to include in this kind of longish term thinking. Because, sometimes, it is easier to try something new with a blueprint from a person who went there before you did.

Trampoline exercise to ease chronic pain & stiffness

A mini trampoline probably won’t solve your chronic pain issues. My JumpSport 550fi rebounder* has not cured my autoimmune disease, nor did I expect it to. What it has done is offer me is an opportunity to rise up from my seat and move in a way that doesn’t aggravate my sensitive joints.Hardback library book on JumpSport fitness trampoline to show relative size

JumpSport 550fi specs

I ordered my fitness trampoline from Costco.com and received it in mid-July, 2020. I believe the JumpSport 550fi model sold by Costco is simply the manufacturer’s 550f model with the optional Handlebar accessory included.

Here are the specs if you’re interested in the same rebounder I have:JumpSport 550f/fi specs including price, size, weight

My JumpSport 550fi came with two workout DVDs and a one year subscription for additional streaming content. The former was at an intensity too high for someone with my health issues, and I never attempted to access the latter. Watching the instructor led exercises on the disc was helpful for getting ideas about how I might adapt moves to my own level, however.

I wouldn’t go so far as to say I’m “bouncing my way to fitness,” but I am getting up off my backside and moving vigorously more often than I did without the trampoline. When even common, everyday tasks present you with physical challenges, this feels like a big win!

Recent studies suggest that even very sedentary people gain massive improvements in health and longevity from fairly small amounts of exercise. My personal goal is to always—every day, no matter how bad I feel—get my blood pumping on purpose for at least ten minutes. During pandemic lockdown, my fitness trampoline has become a key component in achieving that.

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Hot water bottles to warm up 2020’s chilly COVID socializing & studies

It’s 2020, autumn, and the pandemic did not miraculously resolve after the election. For those of us who believe in science and value the health of others, the only safe way to socialize these days is to take our meetings outdoors.

Red autumn plant by fence - 1I suffer more from the cold since developing an autoimmune disease, but November in New England isn’t traditionally known for sedentary al fresco activities. Even hale and hearty young people become uncomfortable sitting still as the mercury drops much below room* temperature.

Snow sprinkled evergreen trees in autumnAnd, of course, we got weather like this in October!

The first step to staying comfortable outdoors is wearing appropriate clothing. It is always wise to bring at least one layer more than one thinks is necessary for extended jaunts on cool days. Wear a cap, and bring your gloves, too, of course. But if the sun sets, or the temperature drops below 60º F or so, the amount of clothing required—or the need for expensive, highly specialized gear in which you may not wish to invest—can become burdensome.

teal softshell rain

Why I use hot water bottles at home and outdoors

I send my child to outdoor classes—and welcome visitors to our yard for socially distanced visits—with a cheap, simple, classic, soothingly warm hot water bottle. Adding a source of radiating heat beneath a blanket or tucked into a jacket can add hours of comfort for anyone, and, as a bonus, it also helps ease pain for those of us with arthritis.

Unlike a heating pad, you aren’t tied to an electrical outlet with a hot water bottle. And, while I also use microwaveable “warm bags” —which I’ve heard friends call “rice sacks,” “heat pillows,” and also “heating pads”— the grain filled type weigh just as much, yet cool down relatively quickly compared with the long sustained warmth of water with its very high specific heat capacity.

Red rubber hot water bottle on bed

My history with hot water bottles

Before I married my husband, I’d never even seen a hot water bottle in real life. I knew what they were from old novels and cartoons, but hadn’t noticed they were still sold in stores.

Quaint and old-fashioned hot water bottles may be, but I’ve become a convert. I’ve found them readily available in major chains and tiny Main Street Mom & Pop drug stores across America. Ask the pharmacist—or the oldest person on staff—at your local shop, and you will probably get what you need.

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LunchBots stainless containers for life, even lids lost 10 years later

It can be hard to splurge on expensive items designed to last a lifetime when cheap, semi-disposable alternatives abound in our stores. Their ubiquity makes them seem like the obvious choice.

For parents preparing to pack daily lunches for school, stainless steel and glass containers are a perfect example. I can buy a week’s worth of plastic sandwich boxes for the price of a single stainless steel one.

Screen grab shows $17 for stainless sandwich box vs $8 for 3 plastic ones

Kids lose things. Kids break stuff. Kids aren’t necessarily careful with something just because Mom paid more for it.

And, after all, they are just children! While I want mine to grow up to be careful stewards of their possessions, I’d also like for them to be able to enjoy a meal without fretting about my reaction if the fancy new lunchbox gets dented or scratched.

In spite of such obstacles, the LunchBots brand proved to me this week that I was wise to invest a bit more cash in their products vs. the cheaper plastic competition in 2010. They stand behind their products, even 10 years after purchase!

LunchBots is one of a few companies I’ve personally patronized that opened for business c. 2008. That’s when plastic-as-poison was gaining mainstream steam, leading suburban moms like me to look for non-toxic alternatives to plastic food containers laced with BPA and other endocrine disrupting* compounds that may or may not leach at dangerous levels into what we eat and drink from them.

In 2020, LunchBots replaced a ten year old lid that my child lost. They didn’t charge me a cent, not even the actual cost of mailing it!

Replacement LunchBots Pico lid next to well worn 10 year old version Continue reading