Category Archives: Uncategorized

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.)

Osteo and RA and Age, Oh My!

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.

 

 

A New Year Wish

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.

sunset at sea

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.

Energy Banking

“The pajamas are right near here,” I say.

“Later, I want to look at shoes now.”

I sigh. We are at the mall, in one of its biggest stores, with lots of acreage. We are there because he wanted more pajamas. There’d been no mention of shoes, and immediately, a thought assails me: the men’s shoe department will makes us walk miles to find.

“You know how I deal with this dis-ease?” I ask, as I chase his long strides. “Like I have an energy bank account. And I can’t spend $100 when I only have $50 in the bank.”

It is his turn to sigh.

We end up skipping the pajamas. He has plenty anyway. Besides, he finds the shoes he’s been wanting. After we pay, he turns to me. “I wanted to go upstairs and eat. Do you think you have enough in your energy bank?”

Wow, maybe after all these years I have finally found a way to get through. To help him visualize how it is sometimes. How the lethargy settles over me, and the energy seeps away. How I’m so tired of being tired.

Now, with no kids underfoot, and no regular job to get in the car and drive to, I should be overflowing with energy.

RA is such a thief.

And this year it seems more greedy than usual. But I try to economize.

Last month our anniversary fell on a Friday and we went out for a nice dinner. We thought we might add a movie to our night out, but the show times were on too late.

It would have been after midnight by time we left the theater. And the next day we had his work picnic and a train ride to go on with our kids and our granddaughters. And I definitely did not want to be tired for that.

So we decided to catch a movie later that same evening, when we could sleep in on Sunday morning. Things are far more enjoyable when I know I can schedule a rest and recovery window.

Though I don’t really “rest.” I occupy myself with things that don’t require much of an expenditure of physical energy, like reading, or writing, or quilting. I make new energy deposits by doing the things I love to do.

I’ve now picked up another activity that takes me away from the tiredness, and the aches and pains, that like to visit me more often than I’d prefer. I’ve taken up coloring. It makes me feel so retro, though I do have my detractors.

“Didn’t you color when you were little?” he says, when I start working on the umpteenth page.

“Nope,” I lie.

I’m pretty sure I got to color in kindergarten. Wasn’t staying within the lines part of the curriculum? But I don’t remember having the luxuries of unlimited crayons and coloring books at home.

Coloring is now being touted as therapy, as it lets you unplug from the day’s trials and tribulations, sort of. I know I can never release the hatch that jettisons RA from my life, but I can allow myself time to forget about my parasitic passenger.

Below: some of my moments of zen. And as Mr. Spock says, “Energize.”

 

Dream

Always dream.

joy

Have faith in you.

joy1

Find joy in all the little things.

elliot

Live this Eliot quote.

 

Future Planning

I read somewhere, some time ago, that RA can steal ten years of your life. I doubt that is still true, if it ever was, I mean how could anyone pinpoint the exact amount of time RA took from you? With new advances in treatment maybe there is no specific loss of days attributed solely to this disease process.

Luckily, I haven’t had to test the waters of the new meds out there. I’m still stuck on my weekly Methotrexate. Nine pills, no more, no less. I want less, but my doc is so very conservative with change. His philosophy is: don’t break what’s not broken, while mine is: let’s take it to the limit, none!

Ah, I can only wish.

But I am holding steady, and that’s nothing to sniff at. One must feel gratitude. And I do, but still, what I read about the ten years pops up in my head every so often. Like yesterday during our appointment with our financial planner.

He knows I want low risk in anything we do. If I was younger, I tell him, perhaps I would go for broke, but I’m not as young as he is. He smiles and then gives me options, perhaps a five-year annuity sounds better than a seven-year one? Yes, five sounds better than seven in this case.

What if in five years I’m sick and need the money and it’s stuck in a seven-year pit where if I take it out I forfeit some?

Then again, what if I’m sick in three years? Two years?

But what if I’m still sailing along on MTX seven years from now?

How can we know? And do we want to know?

I don’t think I do, so I will keep that ten-year thing at the back of my mind. It helps to motivate me to make the most of today. To make the best future plans. Because what if the countdown has started and liftoff is looming? 10 . . . 9 . . . 8 . . .

 

Life, etc.

So, I’ve been gone so long, I forgot how to get into the admin part of this site. I shall have to use their newfangled platform. New to me, that is.

You know what they say, life is what happens while you’re busy making other plans. Or as my mother used to say: Uno pone, Dios dispone. (one plans, God decides)

But as they also say, life goes on, RA and all. I don’t want to exclude my little parasite for fear that it might resent being ignored, like Glenn Close in the movie Fatal Attraction.  That was a great line, “I’m not going to be ignored,” she said. Why would Dan think that a force like her could ever be ignored.

RA is like that. It won’t be ignored, but we can try. Every day. Some days I’m more successful than others, and presently, it’s behaving itself. I have been doing manual labor for five weeks. I decided to go on a remodeling binge. My husbands pleads, “This it, right? We won’t do this again, will we?”

Funny thing, he has to do nothing, except put up with a little inconvenience, like sleeping in the other bedroom for a couple of weeks while they worked on our bathroom and closet. And maybe skirt around the furniture while they paint the walls. He’s at work all day. I’m the one home juggling the needs of several crews at once.

But I did bring this on myself. I never knew how many books I own, or how many framed pictures and artwork were on my walls. Seeing them all together was eye-opening. And I’m willing to lug my beloved books from room to room, no matter how heavy they are.

My only complaint is that if I sit too long in between spurts of activity, I have a hard time getting restarted. I feel like the tin man, rusty as hell, frozen in place. But as I told my rheumy who laughed at me (laughed with me?) it’s age, wear and tear, not specifically RA. Though I’m sure it’s in cahoots with the osteoarthritis, and we won’t specify the age. I’m years young, not years old.

It’s been a busy year. I was psyching myself up to live through another June 11th, the day my husband tried to check out last year. We are both still traumatized by those events. And while I was dreading the day arriving, my son had a car accident. He had an injured ankle, which turned out to be fractured. But the cause of the accident rocked my world. He’d had a heart attack, at the age of 35.

This was June 2nd. And at three o’clock on the morning of June 5th, while I was trying to sleep but couldn’t because they were going to do a cath that day to find out what heart damage there was, my older son called me.

You know that a 3 a.m. phone call is a bearer of bad news. I held my breath as I reached for my phone, thinking about his children, him, his wife. But they were all O.K. He had called to tell me his father had just died. From a heart attack.

He’d had three already, and had been told his only possible treatment was medications. I knew the day would come, but you are never ready. I’d spent part of my life with this man. And though we went our separate ways, we remained connected through our son.

I immediately wanted to split myself in two. Both my sons were in trouble and needed me. One, alas, far from me. I had to think. I know my older son has a wonderful support system in his wife and her family. I see how they love and respect him.

And my younger son was scared to death, his wife is pregnant and she has no real family close by. I had to stay put. But it was really, really hard living through the physical and psychological trauma of one son, while aching to be with the son who was feeling such emotional pain.

I will see him and his family in a couple of weeks. We are meeting up in Disney World. And then we see each other again for Christmas. I can’t wait.

My younger son is dealing with his new, hereditary health status and is still limping around. It will be a while before his ankle, tendons, and ligaments, recover to where he can get back to his karate training. He had scheduled to test for his 2nd degree black belt at the end of June.

Meanwhile we await the birth of his little girl in nine weeks or so. I can’t wait for that either and have broken out my sewing machine. More baby quilts to make.

Through all this, RA has maintained a presence, though not an overly aggressive one. I am completely off Prednisone and have had no other med changes. My labs are slightly off, but then so am I.

Hope all is well with you, dear reader.