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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.

 

 

 

 

 

 

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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.

 

Have You Gotten Stuck Yet?

Two Novembers ago, I was stuck in the hospital with pneumonia. I’d been diagnosed with the flu two days prior at the urgent care center. That day, I’d waited for my husband to get home from work because I didn’t feel well enough to drive myself to the doctor’s office.

I wasn’t surprised to learn I had the flu. I felt bad enough. I recalled how it’d been over a decade since I’d had the flu so I figured I was due. The only thing I remembered from that time was my husband’s near-carrying me the few steps from our front door to the car. I was that sick.

What was surprising this time was that instead of getting gradually better, I got gradually worse, so much worse that in less than 48 hours I barely had the strength to dress myself to go back to the urgent care. When I reported chest pain, their mood changed from what can we do for you? to how soon can we get you out of here?

They offered to call 911, but I said we’d drive the couple of miles to the hospital ER, where, after innumerable hours of waiting, during which they stuck me for blood and IV placement, and took x-rays of my lungs, it was determined that I had pneumonia.

I knew I was bad off. My fever was soaring and I was drowning. When my husband said, “Maybe they’ll send you home,” I heard myself say, “I’m afraid to go home.” As if from outside myself, I realized how truly terrified I felt at the thought of leaving the haven of the hospital.

By the end of five days, I was ready to blackmail someone into letting me go home. By then, the heavy-duty IV antibiotics had done a number on those nasty little bugs in my lungs.

I’ve put these memories away for the most part, memories that are only triggered every October when I take steps to prevent another “November.” Until last Saturday, when my seven-year-old granddaughter, who lives with us, became listless and feverish. She wasn’t displaying asthmatic symptoms, which are par for the course for her when she has a cold, probably because she didn’t have a cold.

My daughter wanted to wait till Monday to have her seen at the doctor’s office, but I nixed that idea. The fact that she presented no other symptoms to explain the high fever was concerning. Sunday she was diagnosed with Influenza A.

I was relieved to know what it was, but I was also worried about how it would affect her, and afraid that the rest of us would succumb. For the next few days I watched her acutely for any worsening, while I tried to tamp down my worry. But she took it like the trooper that she is, instinctively resting and taking in a lot of fluids. And after lolling around the house for three days, she returned to school. Yesterday, she came home tired but in good spirits.

My fingers are crossed that we in this house are done with the flu for this year. It’s too soon to tell if anyone else will come down with it. All we can do is watch and wait. And that brings me to my original question: Have you gotten a flu shot?

 

Not a Second Longer

So, after all that we have endured in 2016, I hear tell that it’s going to last a second longer. Imagine. Of all the years to add another second to. I’m not all that interested in the particulars as to why that is, I just find that extra second a tad too much.

This year started out pretty much like any other, with promise, like all new years do. There we were moseying along and then, wham!

We’ve lost so many artists this year, my head spins. Including George Michael of Wham! I can’t even get my head around the loss of Princess Leia. Wow! She made girls sit up and take notice way back in the 1970s. What made Princess Leia a force to be reckoned with was the force of the person who portrayed her, Carrie Fisher. (And now her mom. Wow, again.)

Carrie Fisher’s loss felt close to home. She suffered an incident in midair. Where there were no paramedics at the ready to deploy the paddles immediately. There was no IV in place, no monitor to signal exactly when a shock was needed to preserve life.

I feel sorry for her daughter and her family, because there, but for the grace of God, go us. When my husband had a massive heart attack in June, all those variables were in place. He decided to code after the paramedics had him hooked up to monitors and had already placed an IV.

That moment sent us on a roller coaster ride that hasn’t yet ended. The car has slowed down, the dips have leveled off, but we’re still on it, and will be on it forever. But the operative word here is: be. A state of being, as opposed to a state of having been.

The main thing I had planned for this year was to pursue a third copyediting certificate. This one would take four semesters and be the most intensive training so far. The last semester scheduled to end this December seemed so far away. And right when I was due to start the third course, I found myself in the ER trauma room watching them work furiously to save my husband’s life.

His recovery took center stage, but I began my course with faith that I would persevere and so would he. I had little sleep and little rest for months. Every spare moment I had, I worked on my assignments, always wondering why I felt so stressed editing for my teacher when I didn’t editing for others. That was weird.

I also prepared for the inevitable flare-up that would appear. I waited for the mother of all flare-ups to knock me down and not even let me type. But when I went to my rheumy in September, all was normal. I sat speechless. How could that be? After three months of intense stress? There was no explanation.

By then, my husband had returned to work, thanks to the collateral circulation his heart had built up during all his years of being an athlete. The doctor called him his “Miracle Man”  when he sauntered into the doctor’s office wearing his Stetson Fedora with the brim tipped down rakishly over his eyes. I couldn’t tell if the medical students trailing the doc that day were more in awe of his cardiac history or his hat.

By all that is written, he shouldn’t be around sauntering anywhere, but he is. I shouldn’t have aced my certificate program, but I did. And I shouldn’t have a second round of normal lab results this month, but I do.

Color me bewildered. I don’t understand it. But as they say, don’t look a gift horse in the mouth. Today is my birthday, and maybe after our dinner out I will stop to buy a frame for my new certificate from UC San Diego. I didn’t know they were going to make it look so impressive. Everyone says I must hang it up.

I’ve never been happier to say goodbye to a year as I am to this one. I give thanks for all the good this year has given us, but I don’t want to have to wait a second longer than necessary to hang it up.

I wish all of you kind readers a Happy and Prosperous 2017!