I logged in to my Pandora music app and Ella Fitzgerald came on singing “Have Yourself a Merry Little Christmas.”
And I thought, wow, how time flies. I like to use music as therapy, as a guide down memory lane, as a soundtrack to my life in general. What a way to measure time, Christmas music right before April Fools’ Day. It brought me up short as to how much time had passed that I hadn’t needed to lean on Pandora.
Mariah Carey came on next (I had to finish listening to Ella’s beautiful voice) with “I Don’t Want a Lot For Christmas.”
I would shorten that to: I don’t want a lot. Peace, quiet, family, friends, music, the bright yellow orb in the cloudless sky, an ocean breeze every now and then, a place to write, books to read.
2023 came in with a bronchitis bang. It was a lovely Christmas where I had the joy of having all four of my kids and my four grandkids under my roof for the first time in a few years. It is rare that this happens so I reveled in the chaos of these little people so dear to me romping about the house. I think my husband enjoyed it as well, though he would take periodic breaks in his office, I think to come up for air. He’s been spoiled with just the two us rattling around the house for a while.
But I basked in my recliner taking it all in, especially the banging of pots and pans in my kitchen as my daughter-in law cooked for all of us.
Pots and pans that I wouldn’t have to clean! What else could I want for Christmas? But as it happens, I had a birthday in-between Christmas and New Year’s. It usually gets rolled up in all the festivities, but not this time. Because it was a milestone birthday, my kids cooked up a 70s celebration, secretly decorating the patio like a disco of yore and dressing up in hot pants and knee socks, while my grandson kept me busy in my bedroom listening to him read from his new book.
It was a glorious day capped with a large arrangement of white roses from my son and his family, he whose wife cooks up some delectable Mississippi magic in the kitchen. I like to describe her food as the kind you can’t stop eating. When she volunteers to cook, I say, yes, please, and get out of the way.
Sadly, by New Year’s Eve all was nearly back to normal. I said goodbye for now to all but one visitor and the next day arrived my latest guest: illness. It started with a cold. I’m used to colds lasting a couple of weeks. Rotten immune system and all that. But this lagged on. Seemed to get better, then got worse, then seemed to get better, then got worse. I finally succumbed and went to urgent care. I bypassed my doc as they couldn’t test me. But since it had been over a week, the doc said no point in testing for covid or flu. He merely treated my bronchitis and sent me on my way.
But through all these weeks of painful coughing, now thankfully much, much better, I’ve had the memory of this holiday season to keep me warm and comforted. There really is no better medicine.
I hope you all had a wonderful holiday and that 2023 treats you kindly.
I will have a full house this year, to celebrate another milestone birthday. And I’m grateful for that. I truly am. I wonder how it is I got to be this old. I still feel twenty! But I have survived a year since the slipped disc diagnosis. Slight, I keep reminding myself, as if that alleviates things. But, hey, the pain is more controllable. For that I am grateful.
I tell myself how lucky I am to have illnesses that hurt worst in the morning. I have never been, and will never be, a morning person, so how apropos is that? I can linger in bed, read, write, play on my iPad. My responsibilities have lessened with age. One perk, I suppose. Or maybe, I have downsized them by instinct. Self-preservation.
Whatever it is, I give thanks to have all my kids and grandkids with me this year in what may be the very last Christmas spent in this house. I may have to change my header from palm trees to mountains. Palm trees or the sight of palm trees has always been soothing to me. They represent home, home in south Texas that is, but they have also been representative of home here in south Florida for over thirty years, though I’ve never felt of this place. Have just been passing through for three decades!
I look forward to making plans for next year. I am making mental lists of what goes with me, what gets sold, what gets given away. Something else to think about, occupy my mind. But for now, I will enjoy my family and give eternal thanks for all that I have been given in this life.
All.
I wish everyone the merriest Christmas, happiest holidays, and the very best 2023!
Education has always been a high priority for me. I don’t think I’ve ever stopped going to “school,” stopped taking classes, stopped learning. Stopped wanting to learn.
My environment growing up did not cultivate that in me. Nor in my siblings. I wondered what was wrong with me, at times. To always have my head stuck in a book, when no one else in my family picked up a book willingly.
I picked up book after book, even at risk to my well-being (more on that someday). But I persevered, and picked up a lot of books in nursing school, and afterwards. And although I did not achieve all that I wanted to academically, kids, job, life, etc., I’ve had the unparalleled joy of watching my daughters reach higher than I did.
I’ll take that, Life, I’ll take that.
My daughter, graduating with a master’s degree in English Literature a few days ago.
I do these match-three games in bed on my iPad in the mornings. I usually lose so my five lives end quickly, but I’ve downloaded three of them, so there! I do them while I run through my exercises and stretches. A slipped disc has joined the party, slight they say, but boy, does it make itself felt sometimes.
So, I tap on the screen looking for things that look like each other while doing my knee-to-chest contortions, and double and single leg lifts. Letting my brain mull over the next chapter I’m working on. I like to write and revise in my head, which I later transcribe onto the screen.
I typically zone out while the ads come on, but this game promo caught my eye. I wasn’t sure I’d read it right, so I paid attention when it came on again. It said: I never knew anxiety till I played this game.
Whaaaa???
Is that reverse psychology or something? Isn’t the object of the game to relax and enjoy it? Are they playing with our minds or do they just think we’re dumb? Or maybe, maybe they just need an editor, in which case I suggest: I never knew (the end of) anxiety till I played this game.
Enjoy some John Lennon, with a touch of French. (Sorry England, Go France!)
I remember my transistor radio. It was a bit bigger than a pack of cigarettes. I lived with that radio, or rather, it lived with me, the music constantly piping through to my ear. It soothed me and my teenaged angst while I cried my “96 Tears.”
I remember listening to the Beatles’ “Eight Days a Week” while taking down my much older sister’s laundry from the line. I would go to her house down the block from ours to escape the never-ending chores. Doing chores at her house seemed like a break, a holiday from doing them at home, where it seemed I did chores eight days a week.
Besides, she had a telephone before we did. A thick, black, clunky thing on which I could call the boy I had a crush on in junior high. Only to hang up when he answered. There was no call waiting, or caller ID back then so no evidence. I found his number by looking up his last name in the fat phone book delivered to every household that had a phone. To this day I remember his last name but not his first. Weird. And I can’t remember what he looked like either. I’m only sure of one thing: He didn’t know I was alive.
I remember sitting on the bench behind the house that held the wash tub where I’d scrubbed clothes against a washboard before we had a washing machine. I felt I was hiding though I’m sure the sound of my radio gave me away should my mother find another chore for me. As I leaned back against the wall my sister appeared over the back fence like a disembodied head. Come with me to the store, she said. I sighed, but she was pregnant with her second child, so I got to my feet.
My radio of course went with us as we plodded down the hot, sandy soil of the alleyways to the small neighborhood store. I paid no attention to what my sister was selecting as we strolled through the aisles. At the checkout, I became painfully aware that she was short of money. She stared into her coin purse for a moment, then began removing item by item of her meager haul as she watched the numbers on the register decrease. Finally, the cashier said, you can pay me later, and my sister nodded her thanks.
I don’t remember the music on the way back. Perhaps it was “Magic Carpet Ride” which could whisk me away. I just remember aching for my sister as we walked in silence. She hadn’t needed me after all.
Fast forward about a decade or so and I see myself dancing to “Ladies’ Night” in my own kitchen late at night. The music now coming from a much bigger radio, one that I couldn’t tuck away and hide from prying eyes and perked up ears (Mom). But I had no need to anymore.
After I put my toddler to bed, I stole time from my studies to dance until I was as hot and sweaty as if I’d spent an hour on an actual dance floor, all the endorphins streaming wildly. It was my therapy. I needed it to get me through those long and lonely years when my only true companions were my son and my textbooks.
When I left the sad north to head back to Texas, my collection of 8-track tapes accompanied me as I drove cross-country. I had a small suspicion that when I got home, I might find myself a cowboy who would teach me how to two-step through the rest of my days. But the only cowboy boots I saw and heard were the ones that clicked onto the pavement when their wearer jumped down from his red pickup in the middle of night, leering at me as he tried to coax me aboard.
He and his male companion had seen me alone and vulnerable at the bus station’s outside public phone waiting for my father, my car had broken down and had to be left behind in a one-horse town to get fixed. My dad arrived in time to save the day, but that incident put me off cowboy boots forever.
Instead, I chanced on motorcycle boots. We met amidst the loudest music, “Funkytown,” and he continued to make music in my heart for months. Even now, my soul sings when I remember his touch, his gentleness, his essence. His promise. The music remains, like “Brass in [my] Pocket.”
Today my transistor radio has been replaced by another hand-held item, a phone that is a minicomputer. But regardless of its many high-tech capabilities, its most valuable feature is its ability to pipe music through to me. From my twenty-some Pandora stations, or my recently set up iTunes account. My pain relief, I mean my music, is always available. And though there has been decades of music released since the advent of that tiny radio, I find that my choice of music remains the same, primarily the art of the 1950s, 60s, and 70s.
In these soulful melodies lies the prescription that takes my pain away. That sends me back to a time that my teenage self felt was so horrendous, when in effect it was nothing, nothing, nothing.
In a few days we will have an ablation. I say we, because whatever the outcome is, it will affect me. Us. My husband is lucky. When he had a massive heart attack five years ago, while doing a bike trail, kindly bystanders called 911. The paramedics at that moment were rolling by returning to their station, and he happened to crash in their presence. Fell into an arrhythmia not compatible with life. Later at the hospital, the paramedic told me that he had continued with resuscitation because he saw that he was fit, that he took care of himself. So, I kept going, he said. I focused on his muscular arms as he talked to me and I imagined the power he had put into doing CPR. They were so kind; they even collected his mountain bike from the park where he had nearly collapsed forevermore.
The doctor came to me hours later, during a respite where my husband was not trying to die, and told me that he could not do a bypass. That there was not enough well tissue to work with. I understood. In order to build a bridge, you must have solid ground on both sides. It took months, but because of the collateral circulation he’d developed as a result of his athleticism, he recovered well enough to resume most of his activities. He did have to cut down to 20-mile bike rides instead of the 50 or 75 that he’d done in the past. The doctors were amazed every time he jauntily walked into their office, sometimes with hat tipped rakishly over one eye. Miracle Man, they called him. I felt like asking the doctor, are you writing him up for a medical journal?
Now he has developed AFib. Extra beats that are stealing future beats. His electrical conduit is misfiring. And it must be burned away. He worries about not seeing his granddaughters. Is this week the last he will see of them? It annoys me. He was not as present with his own children as he is with his granddaughters. And I wonder, is it because time with them is temporary? Meant only to enjoy? And with his own children it was 24/7 responsibility. Is it because with time, we see the future in these small beings? Blood of our blood.
I worry about my leg thing, as I have come to think of it. It can be particularly cruel in the mornings and he must be there by 0800. I think I will not sleep that night and trick it into thinking it is just the continuation of the day. Normally it stops hurting in the afternoon and by bedtime I have forgotten about the spinal nerve pain. Or at least, have pushed it aside for a little while. He says he will drive himself and they can call me afterwards. But how will I ever find the car in that huge garage? And how can I even think of not being there? But will they let me be there? They are so strict with visitors in this covid age. But I will limp there regardless and if they turn me away, I will drive home and wait.
That’s what my wonderful and amazing physical therapist said to me. She was having me walk side by side with her while she held her hand up, palm towards me, and had me lean my left shoulder against it as we walked. It was to retrain my brain, though she didn’t specify that, I knew that was the purpose of the exercise.
I tend to favor my left leg, therefore, I walk crooked. My gait is off, with the resultant muscle cramps on that side. Muscles screaming at me, hey, this is not our regular job!
But that’s what naturally happens with an injury, you subconsciously splint whichever part of the body has suffered, to protect it. It is primal, it is reflex, it is the survival instinct.
After the horrific pain I experienced for weeks, due to sciatica and a slipped lumbar disc, my brain wants to avoid a repeat. I don’t even have to think it. It’s like breathing. I limp when I don’t have to.
Now, I have to interrupt the distress signal that’s automatically being sent out. I have to teach my brain that it’s OK now. It’s OK to put my full weight on my leg. It’s OK to walk normally. It’s OK to climb one step with it, and step back down with it. I won’t crumble.
Now at the end of week 6 since this saga began, I am doing much better with medication and even better with PT, after only two sessions so far. I thought for sure there would be hell to pay the morning after my first session, but amazingly there was almost no pain in the morning, which is when I suffer the worst pain of the day, usually.
My therapist is showing me what my leg can still do, putting it through a workout, which even includes pedaling a stationary bike. At first, I was skeptical, but I got on the bike, put my feet on the pedals and got going, and it was like: Look, Ma, no pain!
I have to admit that my favorite moments of that hour and a half are the heat treatment in the beginning, followed by massage to my sore left side and leg, and the ice treatment, along with lower back muscle stimulation, at the end.
In between those moments, I could very well be at a gym with my own personal trainer coaching me through one exercise followed by another and then another. Everyone is masked, given the age we live in now, and everyone is pleasant and accommodating.
I actually look forward to going to my twice-a-week sessions, and I’m thankful to having my leg back in action and my pain mostly gone. And I do my exercises faithfully every day to strengthen my leg and my core. And hopefully, I will need no further intervention.
As I hope all is well with you.
My new exercise ball with which I do stretches while sitting in a chair. My grandkids will have fun with it as well.
I realized with a shock that I haven’t been using my Refresh eye drops for over three weeks now. Normally, my eyes are so dry upon waking that they burn like fire and it hurts to open them, and it hurts to blink.
Every morning, I would reach out my arm so my hand could dive into the drawer of my bedside table where it would search for a single-dose plastic vial. I would instill the drops in both eyes for sweet relief. I could blink, I could open them, I could read, my morning ritual.
But lately, I’ve had no need to go hunting for the eye drops. My eyes were closed so little. They didn’t have the chance to develop dryness. In a way that was good. But in another, that was bad.
Pain was the culprit. Stress the other. Causes for my sleeplessness.
When I first went to my PCP for my leg pain, the nurse walked me to the scale. “Wait until it says zero zero,” she said.
I heard the words clearly, but the message did not compute. I stepped onto the scale while it was still recalibrating.
“You did too soon!” she said.
I stepped off, the message having been delivered, and then I did it right.
“Pain distorts everything,” I said.
And it does. It distorts your blood pressure. It distorts your pulse rate. It distorts your breathing. It distorts your motion. It distorts your awareness. Its distorts your sleep. It distorts your life.
Everything becomes about controlling the pain. Everything revolves around that goal. Those of us with RA pain, or other chronic pain, know this intimately. The invisible pain that we sometimes, or always, live with.
I am lucky. I rarely have RA pain nowadays, strictly speaking. And when I do, when something flares up, I zap it with a few days’ worth of Prednisone. My rheumatologist has me keep it on hand. “You know what to do,” he says, relying on my years of nursing experience. He lets me be my own nurse. I am, in essence, my only patient now.
But this nerve pain thumbs its nose at steroids. I did two Medrol Dosepaks in two consecutive weeks. Each a six-day course. With not much noticeable improvement at the time, but now two weeks after that, I am much better. Before on a scale of one to ten, I rated my pain at twenty. Now it hovers at two to three. For short, blissful periods it drops to zero. And at others it can climb to five or six, so yes, much better.
The problem is the lull fools me. I do stuff. I cook dinner. I have the audacity to change the bed, seeking help for that fourth corner. That tug that I know I shouldn’t do. I do laundry, picking up nothing heavier than a single item at a time. I wash dishes by hand, always a therapeutic exercise for me. The only minus I perceive is the stooping and bending to load the dishwasher.
Though bending in itself relieves the pressure. In the morning, when the pain is at its apogee, I bend and grab my ankles. I drop my hands to the floor and hold the pose. I rinse, lather, and repeat. The best relief is when I do it in a hot shower, ahhhh, hydrotherapy.
But if I do too much, the next morning when I take those first few excruciating steps of the day, I’d say about twenty, I should count them next time, distract myself from the pain, it is so much worse. But once I get those first steps out of the way, the pain starts to ebb. The tide recedes little by little. And I can walk unaided for the rest of the day.
Yesterday, a friend compared me to Sisyphus, but I disagree. His boulder didn’t get smaller.
Today, I awoke at seven, when normally the pain wakes me by five. And the pain registers at about one. I could walk unaided from the moment I left my bed. It could be improvement, or it could be that I did nothing yesterday. Either way, I am eternally grateful.
I am definitely sleeping for longer and longer periods at night. So, I’m thinking I should restock my bedside drawer with more Refresh eyedrops. Whoever thought I would be looking forward to artificial tears when I’ve shed plenty of real ones these past few weeks.
I have found ways to cope, and music is my crutch. Without it , I don’t think I could cope with anything. I finally set up an iTunes account and have been giving my credit card a workout, setting up a playlist to help me start my day. And sometimes end my day.
This song, with a Texas bent, of course, I dedicate to the relationship between my body and me. Yes, stand by me.
Beating Rheumatoid Arthritis 