Monthly Archives: November 2022

Here and Now in the Land of Polymyalgia Rheumatica

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Here are some things we all know:

Nothing lasts forever.

Attitude makes all the difference.

Sleep makes moving in the world possible.

Family, friends, and neighbors – love – make us stronger.

And, yet, sometimes when bad shit happens, we just want to curl up under a comfy duvet with a good book, ignore the phone, ignore all the things we know will make us feel better, and WALLOW. Does it make anything better? Nope. Does it at all change the bad shit? Unh unh. Not a bit. Do we know it’s counter-productive even at the very minute we’re doing it? Yep. But there it is. We’ve all been there.

So I’ve had an image of myself for a very long time. Maybe since I was seven years old. Dysfunctional family. I’m the youngest. Given/took on lots of responsibility from the age of seven. I’m not complaining. It was quite empowering. It was a process that has served me well all my life. And as I aged that image stuck with me. Healthier and more flexible than my cohorts. Quicker, more energetic, more adventurous. Sure, my body was creaky and achy in the morning, but it didn’t prevent me from doing all the stuff I wanted to do.

And then…Polymyalgia Rheumatica. Otherwise known as WAKE UP CALL.

One day teaching six yoga classes a week and driving all over tarnation to visit grandkids. The next day taking 20 minutes to get dressed using strategies that would make a contortionist proud. Legs didn’t lift on their own. Shoulders didn’t rotate on their own; or otherwise.And the pain? We won’t even go there.

Two weeks of that. Googling MS, ALS, and every other dire possibility. To be honest, I didn’t really wallow all that much. Scared myself silly but not a lot of wallowing. A few minutes every morning when I contemplated maneuvering myself out of bed. Sometimes in the middle of the night when the pain of turning over in bed woke me up.

But, here’s the thing. Not just writing a post to rehash the last one.

All those things above that we all know? They’re all true! And they add up to another thing we all know about – resilience. The capacity to recover from difficulties; the ability to spring back; elasticity.

After two weeks, I received a diagnosis and could take MS and ALS off the table (whew!). Uncertainty is such a basic and inevitable part of life, but sometimes it’s more challenging than others. Weird as it sounds, I made my peace with dire diagnoses and death during those two weeks. Glad I can pack them away for now but also glad to have done the work.

All my life I’ve been super careful about medications and medical interventions in general. Recreational drugs are one thing. Drugs that ruin your liver, lead to dialysis, or send you out into the streets looking for opioids are another. Aches and pains? One ibuprofen, maybe a couple of times a week. Torn meniscus? No surgery for me; I’ll treat it with yoga, thank you very much.

So here’s reality staring me in the face in the form of steroids. Steroids! Yikes – the boogeyman of medications. They eat away at your bones. Lead to mood swings. Water retention. Moon face. Can cause skyrocketing sugar levels.

On one side, all those side effects and a lifetime of avoiding medical intervention. On the other side decreased pain and increased mobility.

Not even close.

It won’t last forever. I’m relishing in every minute of walking, slowly, carefully, avoiding stairs, in the glorious autumn weather. Sure, the steroids make sleep elusive but on the 3rd night when I’m so exhausted that I actually sleep for 4 or 5 hours straight, wow!, living takes on a new meaning. I hired a cheerful, energetic cook, to free up my good hours for other things and happily peruse the refrigerator feeling like I live in a restaurant.

I can laugh at the list of 11 medical appointments coming up over the next 5 weeks. Hell, I can laugh at anything.

In Buddhist philosophy, there are lots and lots of lists. One of them is a list of five obstacles. The fifth is considered the most difficult. The fifth is doubt.

I spent a bunch of time during that first two weeks, and occasionally during the past week as well, standing, huffing and puffing, in front of that fifth obstacle. Taking deep breaths. Gauging its height. I gathered 20 years of dharma talks and yoga poses and psychology books, the love and support of family, friends, students, and neighbors, the lessons of my own strength and possibilities learned early in my dysfunctional home, the belief in the meaning of life and God’s plan, took a running leap and now find myself on the other side of doubt.

It’s a tricky disease, this Polymyalgia Rheumatic. Some people are on steroids for a year and wean off them and are fine – maybe an occasional flareup. Some people are on a low dose of steroids for years, or until they die (of something else).

I have good days and not-so-great days. I take advantage of all those things we know. I thank goddess for resilience. And I invite doubt for a nice Indian tea from time to time.

If you thought you knew…

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I thought I knew about aging. After all, I turned 60 a full decade ago. In kindness to my knees, I stopped teaching hip hop and aerobics. Took up yoga instead. Out of kindness to my brain, I became more selective about the books I read and the movies I see. Out of kindness to my heart, I stopped following the news. Out of awareness of the generation gap and changing society, I became more curious about how my grown children were making child-rearing and professional decisions and less opinionated about all that.

I thought my practice of acceptance of the aging process in so many areas was pretty admirable.

Aching knees, varying levels of lower back pain, a 15-year acquaintance with sleep problems, sight issues.

Check, check, check, and check – all accepted graciously.

I think of myself as an optimist but not disconnected from reality. I realize that sickness and death are inevitable. Looking around me at friends with cancer, MS, joint replacements, and a general decrease in energy, I sometimes wondered what awaited me…specifically.

But no more than the occasional and very brief thought.

And then over a period of a week my quadriceps decided to work at 25% capacity and provide unwelcome pain, my shoulders and collarbone joined the party, and my knees refused to be left out.

I went from 90% mobility to 20% mobility over that week. One morning it took me twenty minutes to get dressed. Pain moved in as a permanent body mate.

I felt and walked like a 90-year-old woman…and not a healthy one.

In the past ten days, I’ve seen my family doctor 3 times. I began a series of tests for everything imaginable. Being fortunate enough to live in a country with excellent national health insurance and health care, the bureaucracy is daunting but the availability and affordability are there.

I’ve gone through the process of learning to let go of activities I love like a ninja on steroids. I haven’t driven to visit with grandchildren or taught a yoga class in over a week. I haven’t met friends for coffee, shopping, or a museum visit, either. My walks have gone from 4 or 5 kilometers a day to 1 kilometer on a flat surface…on a good day. Cooking, which I love, has become the simplest preparation with the least standing time. And sometimes I leave the whole thing to my very supportive, caring husband.

I love to read, but when that’s pretty much the only thing I can do it gets old. I love to watch tv series, but I’ve discovered the limits of that, too. I’m super appreciative of my friends who drop by to chat, pick up a few things at the grocery store for me, or just check in to see how I’m doing.

I’m pretty careful about the meds I’m willing to use and how much. I’ve always been very stringent with things like ibuprofen and even simpler pain medications. My pain threshold is pretty high. I went from an ibuprofen or two a week, to one a day, to two a day, and then on to something stronger. Waking up to debilitating pain in so many joints and muscles every day has turned me into a junkie for the 3-7 hours of significantly decreased pain that a Naxyn 500 pill can give me.

My kids are great. They call. They listen. They’re supportive.

The hard truth of this thing, though, is that all of the wonderful people in my life give me a big morale boost and are very logistically helpful, and necessary, but ultimately pain is an individual experience.

Twenty years of meditation and learning Eastern philosophy have been helpful to me in so many areas of my life. And I’m finding that they get me through the occasional moments of deep feelings of loss – loss of mobility, loss of the activities I love, loss of comfort in my body – and allow my natural optimism to revive from occasional panic.

Exercising my deep, mindful breathing muscles and doing a lot of acceptance, living in the moment, and letting go. My ego gets in the way from time to time and the monkey chatter gets really loud, but so far I mostly can reach that sweet spot of equanimity.

Hopefully, we’ll get to the bottom of this. Find a diagnosis and management plan that works. Hopefully, I’ll be able to go back to some or all of the activities I love. Hopefully, we’ll still make that 4-month trip to India in late February.

Meanwhile, it’s been one of life’s toughest lessons yet and I’m grateful for all the many blessings in my life that are coming to my aid.