There once was a chore that I hated to do
Being sent to the kitchen always brought on the blues
But now with RA
And hand pain array
I love plunging my hands into hot dishwashing stew
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.
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.
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
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.
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.
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.
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?
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.
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.
I 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.
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 with my setbacks she won’t be getting it in time for Christmas. No matter, I figure every stitch is a stitch against RA.
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!
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.