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 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.
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.
For a while now, I’ve been drinking green tea. Bottled green tea, that is, which I mix half and half with Vitamin Water. I suppose this would be called, in my parlance, half-strength tea. I used to drink straight black tea for the caffeine jolt I needed. I switched to green tea a few years back after reading about its health benefits (improved brain function? bring it). But I always drink it iced.
I cannot tolerate hot tea, thanks to my mother. She didn’t go for any fancy or expensive store-bought medications. When we were sick, she brought out her teas. We hated them so much we would sometimes suffer in silence unless, of course, it was something that was difficult to hide such as diarrhea or vomiting. Those kind of gave you away and along came the tea with a homemade hot pack or two.
I can see her still, walking through our small house holding a steaming cup in front of her, and cradling it in her other palm as if it were precious. She would stand over you while you reclined in bed and waited for you to drink it, no faking that! When we were little, she would sweeten it with some sugar or honey, but once we passed a certain age, we had to down it straight. No more pampering.
It’s hard to say which was her favorite to dole out, but I remember orange leaf tea made with freshly picked orange leaves from the tree in our backyard. She would boil the leaves and then bring us this dark liquid to drink sweetened only with her love and good intentions. And no, she didn’t read the tea leaves left in the pot, at least I don’t think so.
Another was mint tea, made from leaves picked from the mint she grew in a little herb garden in our front yard. That wasn’t so bad, but we rarely got that. It was mostly taken by Mom and Dad. And then the ultimate was manzanilla tea (chamomile), the cure-all and be-all of all teas. If you sneezed, you got manzanilla to drink and it didn’t taste good. She bought the manzanilla in little bunches at the local H-E-B.
Her teas cured our GI upsets, our headache’s, and our general feeling of malestar (discomfort). And the key word is cured. We truly did feel better afterwards, but maybe it was a combination of our trust in her belief that it really would help and the strong desire to avoid drinking any more tea.
She did keep a few aspirins in the house for such things as sore muscles or sprains, but she relied mainly on her home remedies. Even when my brother injured his leg falling from a tree, that he shouldn’t have been climbing in the first place, she tried hot packs and poultices until I noticed a purplish looking lump on his calf and said, “It’s broken.”
At that, they bundled him up and drove him to the hospital. Sure enough, it was a severe enough fracture that he was admitted for several days. But when he got home, cast and all, he had to drink his share of tea. Just punishment, I say.
Though doctors and hospitals were available and accessible for my mother, she considered them a last resort. If we had a raging fever that her teas and home remedies could not touch for a couple of days then it was time for that last resort. Our family doctor was part of a large practice and it didn’t matter if you had an appointment, the wait was interminable. The waiting room was usually standing room only. You had to be really sick to sit, or stand, in that waiting room for half a day, or you had to believe that your child was so sick that you could not help him or her.
I drink my (iced) tea each and every day, and I think of her. Her philosophy of help thyself. Her willingness to use all in her power to make us well and keep us well. She was born in the month of October and I think of her more at this time And, somehow, I have a strong feeling that my mother has been plying the angels with her teas these past eleven years
Not a day goes by that I don’t get an email from a certain hospital extolling the nursing supervisory positions that are available for me to consider. I get at least one email, sometimes two. One day they broke the record and sent me four. And the jobs come with sign-on bonuses, $10,000 dollars, $15,000, more.
I was at the dentist one day checking my email while I waited for her to come to my exam room. When she walked in, I held up my phone to show her the screen. She peered at it wondering what was up.
“$20,000!” I said, “Just to go work for them.”
She pulled up a stool and sat next to me. “Imagine,” she said, “how hard that job must be if they’re offering that much.”
I didn’t have to imagine. I’ve been there, and done that. Past tense. I haven’t practiced in over a decade and I finally let my license lapse two years ago. It took me a while to completely let go and accept that that part of my life was over.
They must know my license is not active. I suppose they figure I can reactivate it. And there’s probably still refresher courses and long orientations to the job. But how to reactivate my feet to pull thirteen-hour days with no lunch and barely any potty breaks.
But all that doesn’t worry me because I’m not going to do it. Those days are done for me. What worries me is what it all means. What it all points to: A lack of nurses.
Nursing care is why you get admitted to the hospital. Just about everything else can be done outpatient, labs, x-rays, nuclear med, etc., even some surgeries. They can open all the ICU beds they want but without ICU nurses those beds cannot be filled. There not being enough nurses is a scary, scary thought.
I graduated at the height of one nursing shortage in 1980. I had a job lined up two months before graduation. I’d decided to go back home to Texas and sent feelers out to several hospitals in different parts of the state. They all responded with offers of perks and freebies of all kinds. But the palm trees of Galveston captivated my eyes. They reminded me of the palm trees of my home in The Valley.
I went there and faced the streetcar named Reality Shock head on. That first year was sink or swim. I swam and it made me into what I remain, still in my heart, an ICU nurse. But the nurses I have the most respect for, of all the disciplines, are pediatric oncology nurses. My God, their fortitude. They are angels walking this earth.
So when I see that our number is decreasing once again, I worry. I worry because we need them. Because they are indispensable. They see us on the way in and they see us on the way out. And in-between, they keep us as healthy as is humanly possible.
They spend all day and all night with us in the hospital, allaying our fears, answering our questions, holding our hand when the terrors strike, and even covering our loved one with a warm blanket when they collapse in the visitor’s chair out of exhaustion in the cold of night.
My graduation picture as I look toward the future. As students, we wore the stripe up one side of the cap. Upon meeting all grad requirements we got to wear the stripe around the cap. My cap is long lost. I never wore it in the real world.
Awash in the possibilities awaiting me, on the shores of Galveston Island.
I have been away so long, I forgot my login. Thankfully, I don’t rely on the old noodle. I write it down. I write just about everything down. It’s like a nervous tic. Or a need. Or something.
Right now I’m listening to cry-in-your-beer mariachi music. I was in the mood. Not for beer, never beer, some Moscato maybe. Not in the mood for crying either. It’s just that sometimes I get homesick, I miss Texas. Can you imagine? Missing Texas! Maybe it’s true what they say, you can never go home again.
Just feeling a little nostalgic perhaps. Wishing for some do-overs. Some time travel. I always think what if. What if I’d chosen this, what if I’d chosen that, maybe I would have missed the turn that took me straight into RA’s arms.
Maybe, maybe, maybe.
These past eighteen or so months have been eventful and at the same time uneventful. It was January, 2020, when my gallbladder tried to kill me. I showed up septic at the emergency room. It worked so quickly, in hours I went from epigastric discomfort to hardly being able to drop from the car into the wheelchair my husband had trotted over to get for me.
My son surprised me the day of my surgery. I was holding an icepack to my head for the unrelenting headache and had my eyes closed. I heard the door and thought it was my angel of a nurse with my pain med. I opened my eyes and saw him pulling his carryon into the room. “What are you doing here?” I asked.
He was supposed to be in San Francisco where he had been setting up a hospital with their digital documentation system. He smiled and said, “What are you doing here?”
The next day, he sat at my bedside and said there was a new virus out west that he was concerned about. And the rest, shall we say, is history. He made one final trip and has been working from home since.
I didn’t leave my house once between March and September 2020. I’m a homebody at heart, but that was somewhat in excess. I made somewhere between 500 and a 1,000 masks. I lost count. They are all over the country, literally from coast to coast. I’m still making them, though not as many.
I make them with a filter pocket and I stuff a blue paper surgical mask, sans ear loops, in there, so I brave the world with six layers between me and whatever is out there. Not often though. Still sticking close to home.
Two days ago I did venture out after another two months of hibernation to go to my trusty CVS for my third vaccine. I read if you are immunosuppressed or on Methotrexate, you should get a third one. That’s me, so I did.
I had such high hopes, but well, we shall continue to be vigilant.
Boy, Linda Ronstadt could sure belt out mariachi songs. Wow!
If anyone needs masks, I’d be happy to send you some. Here’s a pic of what they’re like.
In the past few years, I’ve tended to buy the lightest cookware and dishware because the heavy ones hurt my hands. Last Christmas my daughter-in-law, bless her heart, gave me the most beautiful cast iron dutch oven cookpot, ruby red.
It looks lovely on my countertop.
Someone, don’t know who, left a clear plastic drinking glass in my kitchen. If you didn’t know better, you’d swear it was made out of sheer sparkling glass. I hefted it, it weighed nothing. I went out and bought some.
One day at one of my favorite shopping haunts (Target), I ran into a back-to-the-dorm sale of cheap dishes. I lifted the bowls. Again, nothing. I bought eight. My ceramic bowls are now backbenchers. Nice to serve in, but not to hold up and eat from.
So as time went on, I made allowances for my hands. After all, I’d say, you’re not getting any younger. RA is not gonna disappear. Osteoarthritis is gonna get you, each day a little more. Can’t let it get you down. Gotta go with the flow.
But now, weight doesn’t matter because nowadays I can’t touch anything. I have what the dermatologist calls “a problem with no solution.” My fingertips split (fissures) and bleed. For no reason that we can determine. I don’t think he even gave me a diagnosis. I meant to ask, but forgot. I guess he’d already named it.
It’s nothing new. This has been happening off and on for a long time. Twenty years ago, that dermatologist told me to stay away from soap and hot water. Right! I was working in an ICU and had young children. My hands were always being washed, gloved, scrubbed, and alcohol-rinsed.
Then I transferred to a desk job. Then my children grew up and left home. Then RA got worse before it got better, before I quit work. Or as I believe, it got better because I quit. And then my hands got lots better; the scourge mostly disappeared for years and years. If my skin broke down, it recovered within a few days. And then, wham!
About three months ago, my affliction returned. Perversely. Persistently. Stubbornly. Tenaciously.
It’s been three months now of pain and suffering. As I told my doctors, it’s almost disabling. And so depressing. Most days I can’t type. I can’t sew. At times, I can’t exert pressure on anything that I hold or the skin on my fingertips will either split or shred. (Sorry for the imagery.)
It’s like death by a thousand paper cuts. Feels like it too. We have so many sensory receptors in our fingertips. It’s what makes touch so thrilling, or so distasteful, depending.
I’ve tried everything in the book. Every cream. Every ointment. Every prayer. I even bought a box of exam gloves, just like the ones I used at work. Back then I considered them a culprit. Now I consider them a protective framework to hold my skin together.
I hit upon an answer by accident. One of my RA treatment modalities is to do a Prednisone hit whenever something physically taxing is on the calendar. I was going to have all my kids (4) and all my grandkids (4) in the house for a week. So I started Prednisone on day 1. And by day 7, my fingers, bless the ground they all step on, were practically healed.
I had a dermatology appointment and his eyes lit up when he saw my hands spread out like a stop sign before him. “Don’t get too excited,” I said. “It’s not your ointment. It’s Prednisone.”
He slumped back down on the stool. “But you can’t be on that forever,” he said.
Truth. And since I was on weaning doses, my fingers broke down just in time for my rheumatology appointment one week later, this past Wednesday.
He agreed. We will do a Prednisone treatment, not prophylactically this time. But again weaning down, though on a more gradual descent, till we get to zero. And healthy fingers. I hope.
“I leave it to you,” he said, in regards to the pace of weaning.
“It’ll be like titrating drips at work,” I said.
He smiled as he tapped away on his laptop. And I smiled as I padded out the door.
Beating Rheumatoid Arthritis 