Tag Archives: RA

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.

 

She Called Me Septic

I hate that word. Hated it when it applied to my patients, hated it even more when applied directly to me.

From merriam-webster.com: Sepsis is “a toxic condition resulting from the spread of bacteria or their toxins from a focus of infection.”

I was not in a position to argue her diagnosis, flat on my back as I was. But the word felt like a stinging slap across the face. Back at the urgent care, I had accepted that I had pneumonia. Had accepted that it was an eventual result from the flu and the fact that I am immunosuppressed.

But septic? That brought up visions of septicemia, of septic shock, of life-support, of death. And I was not quite ready to check out of this world.

Out in the ER waiting room as the bacteria made steady progress against my puny little white army, my husband had touched on where else we might get antibiotics. He was suffering the expected affliction of seeing your loved one sick and being unable to do anything but wait. To him, scooping me up and leaving to find the answer elsewhere seemed a reasonable alternative.

I couldn’t wait either, at least not sitting up. My energy was waning. I staggered to an empty small loveseat and curled into a ball. I wasn’t just out of gas; I was running on the whiff of fumes. Showering and dressing had been nearly insurmountable obstacles back home. Now even the floor seemed a welcoming place to collapse on.

“Maybe they’ll see you and let you go home,” my husband said.

“I’m afraid to go home,” I gurgled. And I was, terrified of both going home and staying.

When the physician called me septic, I knew my fate was sealed. I was locked, in combat.

They say you can deal with anything if you know what it is you’re dealing with. That it is fear of the unknown that is most disconcerting.

But what about the fear of the known?

My five days as a hospital patient progressed pretty much as I expected. I received excellent care. I had attentive physicians, Internal Medicine and Infectious Disease. Both were concerned with my comfort and listened to what I said. And remembered what I said.

The nurses were caring and supportive. Half of them were male, which to me is a sign of the profession improving as a whole.

The nursing techs not only gave comforting comfort care, but they wielded a mean needle. (They did the blood draws.)

There was only one wrinkle. The phone.

Each staff member is issued a cell phone. And I mean every single employee. Those five days in the hospital were a cacophony of ringing phones. At first it didn’t matter to me. I was too busy trying to breathe and cough, and make it to the bathroom in time.

But as the days progressed and so did I, I remembered something that had happened in the ER. The first thing done after my EKG was the placement of an IV catheter. Blood was drawn from it and then its tubing curled up and secured to my inner left elbow.

Once in the ER bed, fluids were started. A short while later more blood was needed but the fluids were interrupted and it was taken from the IV site.

Not long after that came another blood request. This one for blood cultures to ascertain what bacterium was running around in my system. I knew those samples could not be taken from the IV site. That venipuncture had to be uncontaminated, as pure as it could be.

Which is why at the edge of my awareness, I noted the tech answering his phone in the middle of a sterile procedure.

I couldn’t react at the moment, but I filed it away. As the days went by, I noted that everyone stopped what they were doing to answer that phone on the first ring. Everyone. No matter what they were doing.

Both the nurse and the tech made sure I noted their numbers posted on a board in my room. The first thing they did upon starting their shift was to update the board with their particular phone numbers. I preferred to push the call button when I needed something. It somehow felt wrong to interrupt their work because I needed more water or something minor.

I called my nurse on the phone only once. While receiving the very last IV antibiotic dose, I noticed the site leaking. My vein had finally given way. I stopped the infusion and called my nurse directly.

The answering of the phone during a blood draw happened once more. At 4:00 a.m. when I was dizzy with sleep and disoriented by the bright lights overhead. My eyes were closed when I heard the tech say “hello” as he waited for my blood to flow into the collection tube. Though this blood draw wasn’t as crucial as the blood cultures, it still made me angry. They should not have had to be answering a contaminated phone while they were poking a new hole into me.

But it’s not the staff I’m angry with. I have just received the hospital survey to fill out. I decided not to go into this when they phoned to check up on me the day after discharge. I prefer to put it in writing.

Client satisfaction is important in any business. But it strikes me that hospital administration has the wrong priority. It should be keeping the patients free of infection, not free of complaints. Especially those already compromised.

***I want to thank you for all your kind words. I’m sorry I haven’t been able to answer yet or keep up with my reading. I’m feeling better every day and this week I have both my precious granddaughters with me. There is no better medicine. 

I wish everyone a Happy Thanksgiving!

Dx: Pneumonia

I’m tethered. Captive in a small room, its walls closing in on me, shrinking it smaller.

I want to get out. I must get out. But I can’t. I mustn’t.

The door to the bathroom looms in the distance, three feet away. I must go there at least. The cough, the cough makes me want to go, and it makes me want to not move. For to move is to cough.

But I must go. The fluids, the fluids run into my arm continuously, 100 cc per hour. More than three ounces. Every hour. Who drinks that much?

I know if it was left up to me, I would not drink so much. For it only makes me need to get up and it’s hard to get up. It’s hard to maneuver the distance. I have to push the IV pole along with my right hand.

And I have to carry the densely solid electronic brick in my left. It is cold and smooth, heavy. It pulls at the circular patches glued onto my chest and abdomen when I forget it’s there. Its colorful wires mock me, can’t get away, they say, can’t get away.

It is my portable monitor, tracking my heartbeat and respirations. I imagine there is a main terminal at the nurse’s station down the hall where someone is keeping an eye on my rhythm. No, the nurse tells me, it is being read in another building. Another building?

Why can’t I be in another building? The one I live in for instance?

Another hour has passed and I must go to the bathroom again. I grab on to the bedrail and pull myself upright. I remember the box, grab the box. I stand. The room spins a little; the cough pushes me forward.

Afterward, I cross the tiny room to the sink. Why is the sink placed so far away, on the other side of the room? At least it’s not in another building.

I settle back into bed fixing the wires around me. The IV line must be on top of the covers or else it pulls at my left inner elbow, and it’s sore from receiving the powerful antibiotics. I bend my arm and feel around the entry site. It’s soft. That’s good, I think, the vein is holding up.

I lie on my left side, where the pneumonia is. I can hear the expiratory wheeze when I exhale. I shut out the room and concentrate while breathing in. There’s no inspiratory wheeze audible. That’s good. In between breaths, I hear the gurgling, the bubbling in my chest. It’s almost a purr. I sound like a cat, I say to the nurse when she’s in. She laughs.

Everyone is so nice, especially when they are carrying needles. I have to draw blood, they say. I groan. What is your full name and birth date, they ask me. I murmur my answer. I’ve said it so often, I no longer have to try to remember. I know it’s a safety check along with checking my ID band. I know the drill. I’ve been there, on the other side.

A Bubbling Mess

I walk onto my 45-bed med/surg unit. The day-shift R.N. meets me at the nurse’s station with her typical greeting: “It’s a mess.”

No matter what is going on, in her world it is always a mess. Sometimes, though, she is right. She’d been trying all day, she says, to get an IV in. The IV nurse will be on her way shortly.

The IV nurse would have been the one to deal with the “mess,” but she’d seen her chance to go on to better things when I hired on. I couldn’t blame her. It was a big unit, and it took lots and lots of steps to cover it during an 8-hour shift.

After report, I gather my supplies and make my way to the lady who needed the IV. In spite of her bulk, she seems to disappear into her bed. She peers at me over the covers and her eyes get big and round when she sees what I carry.

“I promise,” I say, halting by the door, “I won’t try unless I think I can get it.”

I sit on the edge of her bed and gently massage her arm while I look for a vein that hasn’t been assaulted yet. She visually relaxes as I run my fingers lightly up and down her inner forearm. It is my favorite spot on “hard-to-get” patients. It offers a straight, and normally untouched, avenue, plus the site allows the patient both elbow and wrist mobility.

My heart goes out to her. I can sense her fear and her dread. I see the faint bluish line of the vein tracking up her arm. This is it. My one and only chance.

Her eyes never leave my face and I must betray my relief at the sight of flashback into the IV catheter hub for the strain leaves her face and she smiles.

“Where have you been all day?” she cries, as I secure the line and restart her fluids.

I can see this lady clearly today because for five days last week, I was that lady. Knowing needles were coming, knowing that they were vitally necessary, but dreading them just the same. It seems ironic that shortly before this I’d written about my dislike of needles.

It started with a tickle in my throat. I thought, great, another cold, right when I’m having the house painted and Thanksgiving around the corner. By next afternoon, I knew it was no regular cold. I had chills, fever, body aches. But when body aches can be a constant in your life, it’s hard to give them much credence as a barometer of your overall health.

That evening, I made a trip to the urgent care, Influenza A. Fantastic. It’d been at least 20 years without a flu, so I sucked it up. Deal with it.

That was the plan, but 48 hours later I was in the emergency room. The urgent care had sent me there. My main complaint upon returning was chest pain, so they went into defensive mode: EKG, baby aspirin, and 911 to ER. They mentioned the possibility of pneumonia, but offered me an ambulance ride for good measure.

I said no; we’d drive the ten minutes. Once there they checked me out, started an IV, drew lab work and ordered a chest x-ray, and then booted me out to the waiting room for what seemed like hours. (It was. Definite way of knowing you’re not having a heart attack.)

I seriously doubted cardiac involvement, but I was quite worried about my respiratory status. I was weak and unsteady on my feet. I felt on fire and my chest felt as if the flames lit up higher every time I coughed. Worse was what I was producing when I did cough, and the amount increased steadily. I was bubbling over.

I worsened as I waited for an ER bed. Once there the nurse took my temp, 103. “Huh,” she said as she looked at the reading. She took it again. “Yep,” she said.

Yep, I was bad off.

 

A Terminal Case of Butterfingers

No, I don’t mean the candy bar. Though I haven’t had one in about a thousand years (Ok, I exaggerate), I can still savor the crumbly, peanut-buttery taste that slowly dissolves in your mouth. Unless you crunch down and chew it away quickly. And who wants that?

I refer to actual fingers. Mine, to be exact. And I suppose those of many others who deal with some form of arthritis. In my case, both osteoarthritis and rheumatoid arthritis.

OA comes from wear and tear. And after thirty years of mostly bedside nursing, raising children, and keeping house my hands are worn and torn. Not visually, mind you. Visually, they’ve held up pretty well.

But inside, oh, inside they hide the impact of their hard work.

Now RA comes uninvited. Unbidden, as I referred to it in one of my poems. I’m not sure when mine came knocking, but it was formally introduced to me in 2004. Ten years this relationship has lasted. Ten official years of living together.

The first thing I noticed, the first physical thing, other than a generalized malaise and lethargy, was the declining agility and flexibility of my hands. They seemed to be stuffed with cotton. Or stuffed in several layers of mittens. Mittens, not gloves.

Suddenly, the people behind me at the grocery check-out line had to wait patiently while my clumsy fingers dug out small coins from my wallet. Even the bills seemed to be stuck together in a way they’d never been before. I’d always paid cash with the correct change for my groceries. Something my father taught me, I suppose.

No one said anything, but I could feel the eyes on me as they waited. And waited. I began to feel self-conscious about it and that made the going even slower. My heart beat at a higher rate as my turn approached to lay my things on the conveyor belt.

It’s silly, isn’t it? To worry about being able to dig money out of your wallet fast enough. But that wasn’t the only thing my seemingly thickened, somewhat petrified fingers affected.

The sewing needle seemed to have disappeared. It’s girth reduced to nothingness. I could see it, but picking it up and holding it was another matter. It was a minute, slippery, slithery snake that I could barely control.

Along came steroids (Prednisone), and with that a new day dawned. Or maybe an old day, when I had full control of my fingers, when they were dexterous once again. And, painless.

I have had many years on steroids, and many years off steroids. Off is better. Better for your overall health. On is better for your fluidity of movement. Though it is an artificial suppleness.

Currently, I’m off. And plan to stay that way. At least, 90% of the time. With RA you learn there is a lot of give and take. And if you don’t give, it will take.

I have come to accept that I will henceforth live with a terminal case of butterfingers. At this point, a slight degree of painless butterfingers. One that does not stop me from doing anything I want to do. From writing to typing, from cooking to hand sewing, from housecleaning to holding an actual book in my hands. From caressing the lovely little faces of my granddaughters to whipping out the credit card to buy them things.

And speaking of the art of buying, we’re going shopping today. I think I will pick me up a bit of that crumbly, peanut-buttery escape.

Writing To You From Flare City

This is not a place I recommend you visit or aspire to be, but to drive that point home, perhaps I should take you on a virtual tour of its many destinations.

First there is Feverville. It’s a warm and cloying place where you can immerse yourself in the experience of a low grade temp.  A rise in temperature just high enough to make sure you are not left bereft of the accompanying chills. For what is a fever without those earth-rattling chills? Which reminds me, if you plan on coming here anyway, don’t forget to pack a sweater.

Immediately adjacent is Fatigue Island. This is not a location where you want to hang out indefinitely, believe me. You want to get out, the sooner the better, but there is no one else around to vote you off. And even if there was, time apparently moves at such a glacial pace that if you could muster up the energy to pack your bags, you would be doing so in such slow motion that it would be undetectable. Face it, once here, you are stuck for the duration.

Not too far away is Body Ache Development. It is called Development because no matter how many times you come by, there is always something new, something different going on. It’s an area that is filled with nooks and crannies where pain can take a hold. Rest assured, there is a special something here for every body, and for every part of that same body. Beginning at the narrow neck, it proceeds to a broader expanse called The Back. This is a wide area that can host lots of pain. And it does.

Then there are the byways, four of them, long corridors that can nurture little pockets of pain here and there. These are really dead ends for there is no jumping-off point. You can traverse them looking for a way out, but at the far and painful end you must needs make a U-turn. A U-turn that will take you back to a main component of this Complex:

Stomach Central. Here you can indulge in forbidden foods. Fried shrimp, French Fries, Coke, ice cream shakes and other sugary substances. They taste good and make you forget where you are for the moment that it takes to chew and swallow. They are classified as comfort foods only for that space of time, for once ingested they rebel, leaving you with remorse and regret as souvenirs.

None of these foodie temptations will get you home. There is no pain-free ticket to ride. No red shoes to smack together on hurting feet, no magic phrase to utter. There is only an intangible capsule called Time, and you must wait, desperately but patiently, to be ferried out and carried home.

.