Pain

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.

Sigh-Atica Part 2

My pretty IV. Never had one that’s pink and purple before.

just like I never had sciatica land me in the hospital before.

it’s been a wild two weeks. I had faith that my doctor’s conservative treatment of steroids and nerve pain medication at bedtime would do the trick.

just like I had faith in him. For the past twenty years or more.

Exactly one week later on Monday, I returned to his office, after making it clear to his staff that it was either his office or urgent care.

Can you be here within the hour? they said. I could and I did. He suggested that we increase the nightly nerve pain medication dose and that I start a narcotic to treat the pain that had settled like hot daggers in my calf. Plus Motrin 600 mg every 8 hours for pain as well. And he would order an MRI.

I said, what about the inflammation? He said since the steroids didn’t work, why repeat them? He said that the Motrin would help with that too. Now, he knows who he is talking to. I gave him a look and all he said to me then was, “OK, Irma?”

Since this wasn’t McDonald’s, I couldn’t change my order at will. I took my prescriptions and limped to my car where my husband waited. I scheduled the MRI, the soonest was Thursday, while in the car waiting for prescriptions to be filled.

The pain was doing me in. Especially in the mornings. I don’t cry easily, but I did a lot of crying Tuesday, Wednesday, and Thursday morning. Bent over whatever countertop I could get to, I bawled with the pain, a walker at my side. We ended up with two of them from when my husband had an MI five years ago, and boy, did they come in handy now.

I ended up taking one Motrin 600 mg. It tore my stomach up. I took it with trepidation, but I was desperate so I took the plunge. I lived to regret it. The narcotic he put me on was like taking water for the pain I had. I sought relief from hot showers, letting the water soothe my leg. And from my trusty heating pad, half expecting to incur 3rd-degree burns before it was all over. Sleep? What was that?

I made it to the MRI on Thursday evening. I was glad it was an evening appointment because that was when my pain was near tolerable, but still, lying in that constricting tube with my eyes tightly shut, my ears plugged with soft foam plugs, and covered with heavy headphones that were supposed to provide music, music that was overpowered by the loud clicking and clanging noises of the machine, all I could think of was that my leg was hurting me. I had to lie flat on my back, and that position was not the most forgiving. And I had to lie still, 30 minutes the tech said. I couldn’t move, even if I’d been able to, wedged in as I was.

That night I made an effort to sleep, but by 4 a.m., when I’d struggled to the bathroom, I lay in bed and cried. I knew the gig was up. It was time for the ER. I took one of my fake pain pills, and gave it an hour. Meanwhile, my husband was up and ready to go. Don’t push me, I said.

We got to the ER at 7 a.m. and it was blissfully empty. Not a soul except the staff. That was a bonus in this covid age. I was in the back getting an IV started within 10 minutes. My nurse was this cute little guy that could have been my son. He pushed Dilaudid and Decadron into my vein and smoothly removed those boiling, hot daggers from my leg. I almost cried again with relief. They’d been in there for over a week.

I had a barrage of doctors come by. They all agreed on the treatment, steroids to reduce the inflammation around the nerve, potent narcotics for pain, a strong muscle relaxer, double the administration of the nerve pain medication, among other meds, and admission until pain controlled sufficiently to go home.

A neurosurgeon had been called and he was the first to arrive. I saw the MRI, he said. You have a slipped disc which is causing pressure on the nerve. It’s a slight protrusion he said, but you have degenerative changes and I would not want to go in there to fix it. Thanks, RA! was my first thought. But I didn’t want him to go in there to fix it, either.

An injection into the nerve was also suggested, but I decided to make that plan B. We would go with the meds, body mechanics, exercises, and physical therapy first.

Last night, I had another great nurse. We spent half the night talking. When the day nurse had asked me what I wanted to share about myself on the info board in my room, I said I have RA, thinking clinically. And she said no, something personal, so I blurted out what I like to do best, reading and writing. He noted that and the conversation started from there and went on most of the night.

He held my hand on the way to the bathroom and back. This was an observation unit where the rooms do not have their own bathrooms. It wasn’t far from my room, but it might as well have been miles away. And once on the way back, which was the most painful part as my nerve was now awakened to the fact that I was upright and moving, I said the bad word that rhymes with truck.

I immediately said sorry, but he started laughing. By this time we felt we knew each other, and he said, I never thought I would hear that word from you. And then I started to laugh, in-between gasps of pain.

I fell asleep between 3 and 6 a.m., when he woke me up for my meds. And later, when I managed to get to the bathroom alone as the day nurse didn’t respond to my call, I discovered that half my pain was gone! It only hurt from the knee down and that was cut in half as well. It was hallelujah time, and time to arrange for going home. The meds had made progress in less than a day.

The board in my room.

Sigh-Atica

Photo credit: Emilia Navarro, Atlantic Ocean. This shot reminds me of my current fire (sciatica) in an otherwise calm sea.

Ouch and double ouch!

I activated the launch sequence by being butt-in-chair writing furiously for the last few weeks.

Not to mention the sewing and the quilting. How do people who work in offices five days a week do it? How do long-haul truck drivers?

Meds are on board and heating pad at the ready. Will have to write standing up. If it was good enough for Papa . . . Can’t let the muse escape.

Y’all take care.

Hot Stuff

I take a lot of flak from some members of my family (husband) for not being able to eat jalapeños and other spicy foods. What kind of Mexican are you? they say. Well, the Tex-Mex kind that doesn’t eat hot, mouth-burning foods.

I grew up seeing five-alarm dishes being served to my dad by my mother. In fact, it was my chore to grind the chiles in the molcajete that went into those five-alarm dishes. There was a chile piquin bush growing right by our kitchen door. All my mother had to do was open the screen door, reach out and pull some colorful, pea-sized chiles from it, which she then dumped into the rest of the spices I was grinding.

I remember it made me cry. The aroma, the steam, the fumes coming off those seemingly innocent tiny orange and red chiles. They might have been benign looking but they were not benign at all. For their size, they packed a powerful punch. I don’t know how my dad could eat them, but he seemed to relish anything spicy. As did my mom.

I did try breaded jalapeño peppers once when I visited my son in Mississippi. They came as an appetizer, cut crosswise, breaded, and fried. “They’re good, Mom,” he said, popping one after another into his mouth. I looked at him amazed. He doesn’t eat hot foods, either.  

The second time we went to that same restaurant I caved and tried one, after making sure I had a tall glass of water handy. Was I surprised; they were good! And not the least spicy. Whatever they did to them in preparation, they became, in a sense, emasculated. They lost their sting. Or their stinger.

Now I read that instead of water, you should drink milk to quash the fire in your mouth. I can’t drink milk; it’s just not appetizing to me. So, all the more reason for me to stay away from the hot stuff.

The mouth-burning effect reminds me of the year I suffered with what my doctor could only call thrush, though we knew it wasn’t. It presented as redness and irritation in the mucous membranes, which translated into a constant fire inside my mouth. We couldn’t figure out what was causing it.

At the time, I was the director of three nursing units (with 24-hour responsibility), had very young children (with 24-hour responsibility), and a husband who traveled constantly. I couldn’t eat; it hurt too much. I lived on ice chips from morning till night. I went down to a hundred pounds. The last time I’d weighed one hundred pounds was when I graduated from nursing school seven years before. I couldn’t eat then because I didn’t have time, between my child, school, and two jobs, who had time to eat?

Of course, with the stress my body was now under, I ended up as a patient in my own hospital. The doctors were perplexed. Asked me all sorts of questions, interrogated me actually. Had I traveled outside the country? No, who had time for vacation?

They looked at me as if I was a puzzle to be solved. After much poking around, they hit upon the reason for my “thrush.” A vitamin B12 deficiency. For some reason, my gut was not absorbing enough of it from my food. Since then, I take a supplement religiously. If I slack off, the burning will start creeping back.

Subconsciously, anything hot and spicy takes me back to that awful year, so I pass. I know that capsaicin, an ingredient found in hot peppers, has some health benefits. For one thing, it will clear your sinuses. Fast. Just try some chips and salsa.

Y’all stay healthy.

These are “dress” dish towels I made for family members, with the appropriate theme, of course.

Tea

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

Y’all take care, now.

My mother and me when I was about 2 years old.

Needles and Pins

Needles have factored in my life ever since I was ten years old when I hand sewed clothes for my rescue Barbie. I call her that because that is what she was; my father rescued her on his sanitation department rounds. Picked her right out of someone’s trash and brought her home to me. She was dirtied and naked, but I cleaned her up, and dressed her, and loved her.

I come from a long line of women who sew, by choice or necessity, or both. A lot of my clothes were made by my mother, who made many of her own dresses as well. My much older sister also contributed to my wardrobe by making for me a green plaid skirt that came with attached suspenders. I was surprised because she seemed to always have it out for me, accused me of being the pampered one, once proclaiming that I got to have new shoes, but she only got new soles. Perhaps it had to do with the fact that I was growing and she was grown.

I guess the suspenders were her way of getting even. But if that was her plan, it failed. I liked the skirt and wore it often. Working with needles was ingrained in us, as demonstrated by her choice with which to do battle. Of course, I ended up picking a profession in which needles factored greatly. In days past, I could get an IV into the tiniest and rolliest of veins. It was nothing laudable, just part of my job, just something my limber, strong, young fingers could do.

Today, I am retired from my profession and am an active sewer and quilter. And my fingers are not so limber and stealthy anymore thanks to RA, and the osteoarthritis that comes from wear and tear. But I blame RA more. Always more.

This year, I found myself getting pricked too frequently by the straight pins that I would use to hold piecework together so that the seams and the corners turn out perfectly even as they are sewn. I know my poor fingers weren’t stabbing themselves on purpose, but I got pretty darn tired of it.

I decided to retire the straight pins and switch to these darling little clips. They have almost a death grip and hold the pieces tightly together. But they are a little hard to open if I don’t grasp them just so. And they do pinch me on occasion, but it hurts a lot less than a needle stab. I love them. Not going back to pins unless there is some particular instance why it must be a pin that is used.

So no more this.

The moral of the story is, I suppose, adapt or (hobbies) die.

Yes, please

One of my projects in progress, safety-pinned and ready for quilting. I decided to make myself a scrap quilt using 2-by-2-inch squares out of each of the fabrics I’ve worked with. I reached the size I wanted (just covers the top of my queen-sized bed) without running out of all the fabrics I’ve used for many other projects. But there’s always more scrap quilts to come.

Perhaps I will plan a quilt for my sister. I should incorporate some green plaid fabric, and maybe a shoe print fabric.

Y’all take care now.

I’m Worried

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.

Y’all take care, now.

Hello, Again

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.

Y’all take care, now.

Re-Purpose

I spent a couple of days last week repurposing some sheets.  My-daughter-in-law had given me a queen set when they’d upgraded to a king. It’s soft bamboo fabric, but the bottom sheet wouldn’t stretch enough to go over my mattress. So I lopped off the elastic and turned it into three pillowcases. I also had cut up a sheet of silky, white cotton and I turned that into two more pillowcases.

I like the idea of repurposing. It’s what I did when my fingers were making me suffer so. When my thumbs, index fingers,and middle fingers were taking turns developing fissures, and were consistently in different stages of breakdown and healing, I called on my ring fingers and pinkies to pick up the slack.

I repurposed them. And they, like troopers, jumped to the task. They became my go-to fingers, to work my cell phone, my tablet, even my keyboard. They went above and beyond the call of duty, and the same fate thankfully did not befall them. Though I lived in constant worry that it would.

I was advised by my doctors not to wrap my fingertips with adhesive bandages, which I had been doing every single night in order to keep the prescribed ointment from rubbing off on the sheets while I slept. Too much stress on your skin, they said. Use white cotton gloves, I was told, so I ordered some.

But alas, once I put them on, I could not use my gadgets. Their screen needed to feel my warm, live fingers, apparently, and I cannot go to sleep without reading myself to sleep. So I said, I don’t need all my fingers covered and chopped off the parts of the gloves I didn’t need. I digitally altered them. Problem solved.

They look funny, but it works. And it’s easier to work my gadgets with my own digits than to use a stylus pen. Don’t have to worry about where I last left them. And it looks like I am making my way out of the woods. My fingers are on the mend. (Knock on same woods.)

Just one of the many twists and turns life makes you navigate. But with purpose we go forward, and when that purpose is thwarted, re-purpose.

 

 

 

 

 

 

Journal: The Undertow

It’s something I’m not really conscious of, yet realize I live with on practically a daily basis. Anxiety. What will today bring? What new ache, on what new spot, old spot? How bad will it be? How long will it last? How will I treat it? Will I have to drag out my old friend and foe, Prednisone?

I’m sure every day can be a little anxious for anyone, but we who have RA are accompanied by this evil scourge, just lurking and waiting to whack us one more time for good measure. Arthritis and Anxiety, not a good combination. But they can become an undercurrent in our daily life and we must not let them become an undertow that drags us down.

 

*(I’m working on a writing project and ran across this. I was surprised to see that I had written it five years ago. Surprised in that it still applies, and that I continue to remain free of the undertow.)