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.
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.
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.
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.
The moral of the story is, I suppose, adapt or (hobbies) die.
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.
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.
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.
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.
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.)
So, my hands.
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.
I’ve been lax with this site. Writing in my head, but not on my screen.
I want to say that I can’t believe this year has flown by, but I do believe it. It has.
I want to say that this coming year will be different, that I will not only finish the projects I start (and have started), but that I will begin projects that have existed, again, only in my head.
I want to say that time will tell if that comes true, but I can’t, for time does not control what I do or don’t do. Only I control that.
This has been a good year, all things considered. I did a bit of traveling and spent a week in Mexico City. Months later, I am still under the spell of having visited Frida Kahlo’s home. I find her inspirational, not only for what she suffered emotionally, but also physically. She rose above and turned her pain into art.
My family knows of my Frida addiction and I live surrounded by Frida gifts given to me over the years, from an apron with her image on it to a Barbie doll version of her. But the best part about finally getting to walk through what had been Frida’s home was being escorted by my younger daughter, the world-traveling writer who is living the life I could only dream of.
One thing that I’d never dreamed of doing was going on a cruise, but my younger son finally managed to convince me after several years of trying. We did the Caribbean route and it was amazing, the ship itself. A floating resort. What sticks with me about the ports of call is the color of the sea, an aqua blue that glitters like jewelry in the brilliant sunshine.
And the sunsets at sea. I have no words. But I do have a photo.
An image of hope. It can only get better tomorrow.
Another thing I want to say is that I wish everyone a Happy New Year. May all you wish for, and all you dream of, come your way.
Beating Rheumatoid Arthritis 