Tag Archives: RA

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.

 

 

Nightgowns and Shoes

I’ve been on a nightgown-and-shoe-buying kick lately. I know, strange bedfellows. I don’t think I want to know how many nightgowns I’ve bought, but I know how many pairs of shoes, three.

Why this particular bent? It does go deeper than mere materialism and is far more consequential than just acquiring more to stuff in my closet, for I soon realized I’d been subconsciously heeding the call for rest and comfort.

What triggered this consumption? The Great Prednisone Failure of 2015. My failure, my 2015. The experiment was a total bust. The pain came back. The hands, the feet, the general malaise. After a few weeks off Prednisone my body sat up and noticed. Hey! What happened to Pred?

It didn’t just beg the question; it screamed it. So I scurried into the safety zone, the metaphorical orange-cone ring made up of little white pills.

“You know what to do,” my rheumy said when I confessed my shortcoming. He proceeded to share how he handles flares with the help of our common little frenemy.

I nodded. Yes, the tiny, precious pills that can wreak havoc within your body in so many ways, and in the process grant you the ability to get up in the morning without feeling like a tin woman who needs a squirt of oil into every single cell.

“I want quality,” I said. “Not quantity.” Now it was his turn to nod. I’d rather have five good years and not twenty bad ones. He understood.

In the midst of renewed pain, sleep took supreme importance. Sleep is a great pain reliever, if you can get it. And so in direct correlation, I concentrated on updating my sleepwear.

Nightgowns are the only thing I like to sleep in. Sometimes I prefer silky soft, sometimes cottony soft. The style must needs be flattering, comfortable, and not bunch up under me. Sometimes I swear I’m related to The Princess and the Pea character. Every little wrinkle in the sheets drives me mad and I have to pull it straight. I’ve made my husband promise that he will keep my bed tidy when the day comes that I can’t do it myself. I doubt he will, but it makes me feel better to know he promised. 🙂

The brand matters not, so much as the cut and the fabric. Color matters in that it affects mood. I tend toward black, so refined, so elegant and sexy, too, because why shouldn’t you look nice while you’re sleeping?

And if sleeping is important, getting up and staying up is much more so, and that’s where the shoes come in.

I mentioned in a previous post that I am partial to Clarks. One day, I came across the most comfortable pair in the entire universe, not hyperbole I assure you, at least according to these feet of mine.

Their only drawback was that they were only available in white and it was way before Memorial Day, when I would have license to wear them according to fashion dictum. I couldn’t remember the last time I owned a pair of white shoes. It might have been back when I was wearing saddle shoes to grade school.

But there they were, on sale, and they fit deliciously. Or as Billy would say, they felt mahvelous. I took them home and when I went online to search for a pair in my signature black, there were none to be had in my size. I did find a similar style with the same cushioned footbed.  When they arrived I was pleased to discover they fit just as mahvelously. Since then, I’ve added a third pair in beige and am debating whether I need the navy ones, too.

Perhaps I don’t, after all black goes with everything, and pain-free feet go with eeeeverything. My heels don’t hurt anymore, no matter how much I walk in these shoes. And they were. The pain intense, indescribable, every step jarring needles poking me.

These sandals take me everywhere. I dress them up and dress them down. Whether it’s a leisurely stroll down the Art District, a dinner/movie/drinks date or just chugging up and down the grocery store aisles, these babies come through.

I am back on a very low dose of Prednisone, a tiny buffer between me and the pain. He mentioned injectable Methotrexate as a possibility. I said I would take it under advisement. We shall see, but we shall see in comfort.

"I wanna put on my, my, my, my, my, boogie shoes." -- K.C. and The Sunshine Band

“I wanna put on my, my, my, my, my, boogie shoes.” — K.C. and The Sunshine Band

My Buddy

The culture I come from has a special term for someone with whom you can identify. A someone who can commiserate with you, who can empathize, who can feel what you feel, almost.

The strictest translated definition of the word is co-parent. It describes the person who baptizes your child and becomes their godmother or godfather. With this process they become your comadre or compadre.

In casual use, in the slang form perhaps, it means something much richer. Your best buddy is your comadre or your compadre. You do not need to have a child needing baptism to acquire a compa.

This insightful post by J.G. Chayko made me stop to think about who I have to share my RA trials and tribulations with face to face. Sharing in the sense that they don’t just hear me grouse, but totally get it.

Not my husband, who at first gave me a wide berth, sailor that he is. He thought, since I was in so much pain, that his backing away and not placing demands on me of any kind was the kindest thing to do.

It wasn’t. And though he is now supportive to the nth degree, he cannot know what I feel.

Not my children from whom I hid my disease with a passion for many years. I did not want to let them see me sweat. Must be strong, must be strong for those whom I brought into the world and depended on me.

Now I educate them as to what RA can do when it decides to do it.

Not my coworkers who absolutely depended on me, especially when the buck stopped with me. My pride wouldn’t allow me to let them know how much pain I was in, though I did eventually enlist two of them to help me with Humira injections to my arms, an area that I could not reach myself.

This problem ended when I retired from nursing. Sadly, but I knew it was time to pass the baton. My oldest son is now the R.N. in the family. Though he and his wife, a pharmacist, can relate to the theory of RA and its treatment modalities, they cannot know what it is really like.

So I closed my eyes and searched. Who was there for me? Who was my compa?

And it hit me like a lightning bolt. Of course! I’d just seen him today when we’d put our heads together once again and shared war stories about ways to defeat and one-up RA. We do that every two months, more frequently if RA is being more horrid than usual to me.

He is there for me, always. I can call. I can email. I can visit. My rheumatologist is my compa, for he has RA and he knows.

The Body Shop

It feels like I never leave the body shop. The shop that keeps my body going. It’s not one location; it’s many. I’ve been adding dates and building new relationships.

It used to be only my bimonthly visit to the rheumatologist. This year, I have renewed my relationship with my primary care physician. I have met and learned to trust a new ophthalmologist, new to me at least.

Now I can add an endocrinologist to the list. I swear I’ve been his patient before but they can’t find my name in the system. Perhaps I’m confusing my visits there with my daughter’s because I know I’ve been there before. She just had a second body scan ten years after her thyroid cancer, all clear, thank goodness.

Thyroid problems are part of my inheritance from my mom. Who knows how far back it goes in our history. Two of my sisters and myself have thyroid problems, my older daughter had thyroid cancer at 19 and my younger daughter has a couple of nodules that they’re tracking.

It goes without saying that I trust this endocrinologist. He checked me out and proclaimed me healthy. Funny, I feel healthy too. In fact, I feel great. I’m down to two weeks of Prednisone and then finis. My last dose is scheduled on my daughter’s birthday, so two things to celebrate in NYC that day.

But of course proclaiming me healthy wasn’t the end of it. “I like data,” he said.

I nodded. I already knew I wasn’t leaving that office without a long list of testing orders. I don’t present with any symptoms of hyperthyroidism so it’s unclear what’s causing my TSH levels to bump around.

We’re checking that again, delving deeper into the mysteries of my metabolism. Also ordered are a thyroid ultrasound and a CAT scan. And since it’s time, a bone density scan. More dates, more appointments, more waiting in waiting rooms. Sigh.

But I suppose it’s these visits to the body shop(s) that keep me humming along, operating at full capacity. My motor revs up at the touch of a button and I kick into gear the moment I hop out of bed. Luckily, the few permanent dents I do have are not readily visible.

And there’s no denying I have RA as my daily companion. My rheumatoid factor came back 294, normal is below 14. My rheumy doesn’t check this on a regular basis, but since it’s been ten years since diagnosis, I suppose he just wanted to make sure. Yep, my anchor is dragging along.

I’m reminded of a poem I wrote several years ago, called If I Were Slightly Dented.

If I were slightly dented
and came to you “as is”
would you find it in your heart
to accept me as I am?
There’d be no pretty box
No tissue wrap or twine
to disguise any scratches
or signs of others’ touch

If you were slightly dented
I’d want to know your scars
to trace them with my lips
and to whisper my hello
for it’s those nicks and flaws
that make you who you are
And for that very reason
I’d love you all the more

The Upward Slide

I own a new adjective: hypertensive.

It’s been over a week since I had the eye injection and the sight in my right eye is somewhat improved. It could be coincidence. It could be that time was going to take care of the problem. It could be the Avastin. It could be both.

The reason I can tell it’s better is because when I look at a straight line, the dip in the middle is now minimal. When I follow the line, it undulates as the dip moves along my line of vision. It’s a phenomenon that makes me want to say: Far out, Man.

Before, the line had a steep downward curve past the midline of my vision field. One reason I could not read with that eye, the words were distorted and blurred in the middle. Now I can make out the words, though they are still a little blurred and slightly curvy in the middle.

My new ophthalmologist was immediately concerned about my blood pressure. Though no vital signs were taken at his office, he wanted me to have it checked out. The ophthalmologist I’d been seeing for years never mentioned my blood pressure when he diagnosed me with a retinal hemorrhage. All he said was let me stick a needle in your eye. But this new doctor was persistent and I promised I would.

My BP ran around 110/60 for years and years. Even on the busiest, non-stop days at work, I hardly broke a sweat. “How do you stay so cool?” the other nurses would ask me. “Why raise your blood pressure?” I would respond.

And now, now that I am retired from all those adrenalin rushes and working at something I enjoy when I feel like it, NOW I get high blood pressure? I suppose a contributing factor could be the sedentary aspect of “ass in chair” that writers suffer. Perhaps a standing desk over a treadmill is in order. You’d think all the years on my feet would have immunized me against hypertension.

It took a few years for it to trend up. First 120’s, then 130s and now 140s/80s. I can’t say I didn’t notice it. All the while I was being seen by a doctor every two months for over TEN years. But no comment was made by either one of us. Vitals are taken as part of the ritual. Something to document. Something to prove you’re still around, heart beating. It’s amazing how tunnel vision develops and you end up focusing on one big thing.

RA.

That’s all we saw, every two months. RA and RA-related numbers. The irony is that RA is probably complicit in these numbers as well. All along, my up-and-coming hypertension was hiding in plain sight.

I’m now on Lisinopril 5 mg daily. “It’s a little dose,” my doctor said. He wants me in the 130s. And he wants to check it again in two weeks. He retook my blood pressure himself, with a sphygmomanometer and a stethoscope, though the nurse had already taken it with the blood pressure machine. I liked that he did that. That’s how I started out taking blood pressures on my patients. The good old-fashioned way, where you can trust your own ears and not a mechanical object.

So, heads up: Learn your numbers and talk to your doctor about your blood pressure readings. Stay active and maintain a healthy weight. And if you love salt, cut it out! In all seriousness, I hope no one else has to worry about their BP.

 

Idle Hands

I did an unwitting experiment yesterday. My only intention was a day of rest. It had been a long while since I’d had a day to myself. Normally these are luxuriant days, doing only what I desire to do, but they come few and very far between.

My husband had taken up the challenge of doing the MS Ride once again. 75 miles to Key Largo. And back. On a bike.

Last year he’d said he wasn’t doing it again and I agreed. He’s not exactly 16 anymore; he rides frequently, just not 150 miles in two days’ time. But his company came up with the dough for donation and yesterday he took off at dawn.

I figured since he’d be away all weekend, I’d chill. My daughter and granddaughter, who are staying with us at present, left for the whole day too. I’d kept Alyssa on Friday and we’d worked most of the day on a quilt that she’d designed.

I’d shown her my collection of quilt sketches drawn and colored on graph paper and that made her want to draw her own so that I could make her a blanket she said. I took her scribbles and translated them into alternating squares and rectangles, which she then filled in with color pencils.

It took several days for her to select a fabric from my stash to match each square and rectangle. I then cut them out while she watched. Friday, we took advantage of her staying home from preschool to finish all the cutting and to lay out the pieces on a piece of fleece that I use as a “design wall.” (The cotton fabric sticks to the fleece and provides me with a road map to follow as I sew the pieces together.) It was a busy day that culminated with both us falling asleep early that night.

Yesterday, I slept late and then watched TV all day. Or rather, I glanced at the TV all day while I read. I did make the bed but didn’t get out of it, getting up only to grab breakfast, lunch and dinner. Simple, light meals that required no time at all.

I didn’t feel one smack of guilt for hibernating. Not even a smidgen. In fact, I didn’t feel much of anything until late in the evening when I was preparing to pour some green tea and the ice cubes fell through my fingers. I had a bunch in my hand transferring them from the ice container in the freezer to my glass and then, they were all over the floor.

My husband hates that I do that instead of using the ice dispenser on the door, but it’s so noisy I prefer to just open the freezer and grab a handful. Normally it goes smoothly, but this time I was left staring at shards of ice splayed around me on the floor.

Why had I dropped them? Why had the ice cubes slithered through my fingers so easily? The day before I’d been wielding a lethal rotary cutter slicing through 64 different fabrics with exacting precision.

I flexed my hands and noted that my fingers were stiff and swollen. They felt as if I’d just woken up. But it was the evening, when my fingers are supposed to be most nimble.

But my hands didn’t know it was evening. My hands didn’t know they were supposed to be loosened up by then. They only knew that they’d done next to nothing all day. That they’d been mostly at rest as if the night had extended on through the day. The most intricate thing they’d done was to hold a phone, a tablet or a TV controller.

There’d been no fine motor functions expected of them. No cooking, no housework, no driving, no typing, no writing, no sewing. In essence, there’d been no wake-up call for them at all.

Why did it take me till evening to notice? I have no idea. Maybe I was enjoying the idleness too much. But one thing was definitely reinforced by my inaction. Idle hands become frozen hands.

Quilting

Placing down the pieces, one by one.

Proudly done!

Proudly done!

My fabric stash, or rather part of it.

My fabric stash, or rather, part of it.

Retinal Hemorrhage

Looks like I started the year with a bang, or an “explosion” as the retinal specialist stated.

On New Year’s Eve, I went to see the ophthalmologist one week ahead of schedule. I was due for a six-month follow-up. Since RA made its debut, I’ve had yearly or biyearly eye exams. This time he wanted to keep a closer eye on me, as it were.

Sunday the 28th of December, I woke up with a blur in my field of vision. I thought my reading glasses were smudged, but no, it was my right eye, not the glasses. It didn’t change for the better or for the worse, so Monday I called to move up my appointment.

I knew the news would not be good, so I was not quite receptive to all he said. Once I heard the word “hemorrhage” my brain went on overload. It didn’t really matter at the moment that he wasn’t going to treat it, that all he said was to come back for the specialist.

This past Monday, I went back and absorbed the news, even as my eye had not yet absorbed the blood that had leaked out of a retinal vein. At first, the retinal specialist called it a stroke and after that explosion sounded much better.

The ophthalmologist called it a “retinal hemorrhage” and he took the pictures to prove it. He also wanted to do a test where dye would be injected into a vein in order to visualize retinal circulation. It was the afternoon of December 31st. I wasn’t in the mood and I could hear the lack of enthusiasm in the tech’s voice when she said, “I’m the only one here.”

So it was done this past Monday. The tech told me it was a natural dye made of carrots and tomatoes. (?) I took his word for it and signed consent. When injected, it felt like a hot brick had been applied to the back of my hand and turned it a fluorescent yellow for 24 hours. The huge yellow spot on the back of my hand is now a purple/green bruise and four days later the site is still tender.

The specialist’s recommended treatment is monthly injections (I didn’t ask of what med, my brain was too busy receiving to analyze) for at least six months. He says I have a fifty/fifty chance of it resolving itself. And if I wait too long it could get worse and I’d be doing the treatments to get back to where I am now. Still, the thought of a needle in my eye . . .

The vision in my right eye is worse in the morning, as I have read it normally is due to the blood settling during sleep. As the day wears on, it’s hardly noticeable. It’s a small blurry spot right below where the twelve is on the face of a clock.

My one concern on Monday was flying. I have two trips scheduled in the next five weeks. When I asked if I could fly, he said, “Yes, you can fly.” It made me imagine myself with a pair of wings floating away and reminded me of the joke about the postoperative patient who asks his doctor if he can now play a particular musical instrument. When the doc says yes, he responds, “Good, cause I never could before.”

My other concern was computer time and that was given the green light as well. Today I see the optometrist. I’ve never used corrective lenses, other than reading glasses, and my vision is not 20/20. I think at this point my reading glasses could use some help, as I am doing a lot of reading and writing, and will be until all becomes a blur forevermore.

Has anyone done this sort of treatments? And if so, how did it go?

 

 

A Gift For Others . . .

Four days till Christmas! How did that happen? How did the year fly by so quickly? I should be glad it’s on its way out. It was not a kind year to us. Seems like the years that end in four turn out that way. That means I have a ten-year reprieve. Or is nine?

I managed to get done all that I wanted, well mostly. I survived two major parties at my house, given by my children. I was merely an innocent bystander. And they both went surprisingly well. I dreaded having a bunch of five-year-olds tramping through my house like mini tornadoes, but they were surprisingly well-behaved at my granddaughter’s birthday party.

My son and his wife decided to throw a Roaring Twenties party, a la The Great GatsbyGreat Gatsby

I was to make myself a flapper dress. Well that didn’t happen. I ended up wearing a designer hospital gown a couple of weeks before. Recovering from that event and my wrist going haywire took care of the cutting, pinning, fitting and sewing required.

They turned my patio and back yard into a veritable nightclub. I couldn’t believe it was my house. I couldn’t believe it was my neighborhood, the cars took up three lawns. We had to park two houses away when we returned from taking our granddaughter to see Santa.

aly2I made countless trips to the post office. My wrist did not appreciate lugging all those packages. Now I have to make one more. I found this incredible wool and cashmere scarf for my NYC daughter. I worry about her having to live through these winters, but now she’s looking to move California-way. Yay.

I decided to make her an afghan to keep her toasty warm at night. I started out using leftovers, but I didn’t have enough so the stripes got bigger and bigger as I bought more yarn. I wanted it to look wonky anyhow.

photo (22)

It’s made in single crochet, which means it’s painstakingly slow going. The rows measure about a quarter inch in height. But this is the look I wanted. Something solid, not full of fancy, decorative holes. I want my girl to be warm.

My wrist and thumb complain when I first start working, but they surprisingly quiet down after a few minutes. This has always been good therapy for my hands. A gift for others becomes a gift for me.

I am almost done, there is only the green stripe to finish and I can mail it out, though withphoto (23) my setbacks she won’t be getting it in time for Christmas. No matter, I figure every stitch is a stitch against RA.