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
“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.”
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 . . .
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.
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?
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!
I’ve been cleaning out my office, getting rid of old papers and transcribing some of the hundreds of handwritten pages I had stored away into my word processor. Writing has always been my catharsis, my therapy. And I’ve come to realize just how much as I go through the stack of pages and numerous journals.
Reading these pages have brought back memories, and I suppose I could also say, have wrung back memories as well. Sometimes it hurts to remember. Sometimes remembering brings back the pain, emotional and physical.
I have always known that I’d had RA for some time before I was officially diagnosed in 2004. I knew I’d been sick, tired, listless, and pain-ridden for several years before my current rheumatologist finally produced that Aha! moment, when I finally knew what I was up against. Prior to that moment of revelation, I’d blamed it all on being a busy mom at home and a busy nurse at work.
But my assumption was that it had been only a couple of years. It couldn’t have gone on for more than that without a proper diagnosis, could it? Without my searching for and demanding an answer as to what ailed me.
Imagine my surprise when I found a letter I’d written to my husband who was out at sea in 1995. By the looks of it, I never mailed it. I probably meant to, but was so busy I forgot. Or maybe I changed my mind and decided not to burden him with my tale of woe. More than likely, I felt so much better after pouring out my angst onto the paper that I didn’t need to.
What I wrote astounded me in that apparently, I’d had RA back then. I had it and didn’t know it. And neither did my doctors because when I started the letter I was sitting in the internist’s waiting room, waiting to find out my lab results regarding my “inflammatory process.” Waiting to find out what was wrong with me. In it I write:
I tried going off my Prednisone. I hate being on steroids but my hands became very painful so I went back on it. But my right hand is worse, My grip is weak because it hurts when I try to grip things like when wringing the mop. Yesterday, I met a new doctor at work and he shook my hand. To me, it seemed so hard, I saw stars and it hurt for hours. . . . My hands getting worse is very depressing.
I go on to describe a nightmare I had about something drastic happening to my left hand. I will not subject you to the details. Suffice to say, it was so horrible that it yanked me terrified out of my sleep and I could not go back to sleep for the rest of that night.
It just goes to show how RA can affect our subconscious, as well as our body. And unless I come across other writings, that describe my symptoms so accurately, from before the summer of ’95, it would appear that I have had RA not for twelve or so years, but for at least twenty-one.
In my last post, I mentioned how my lab numbers are now normal, after a supposed twelve-year span. But with this new/old information, I’m wondering if perhaps, like my kids, RA has reached its maturity and has moved away.
One can only hope.
BTW, my left hand is just fine. So far.
When you arise in the morning think of what a precious privilege it is to be alive, to breathe, to think, to enjoy, to love — Marcus Aurelius
I shall celebrate.
For the moment.
Had my rheumy check-up yesterday. Hadn’t been there in four months. I’d anticipated his incredulity when I told him what I’d been busy doing this summer.
It was not the usual summer, not by a heartbeat. But we made it through, almost. In nine days it will be fall. Or autumn, if you prefer. And summer will be behind us. My husband is doing cardiac rehab, working out and lifting weights, with a portable heart monitor weighing him down while he does it, mind you. He complains they go too easy on him. He stopped requiring dialysis weeks ago and the dialysis catheter was finally pulled last week. He’s driving and back at work.
I doubted that this day would come. I knew too much. I read the cardiologist all too well. His eyes shared with me what his words would not. And because I was also weighed down, albeit not with a temporary portable monitor, but with a permanent dread and a constant worry, I doubted. And I wondered, as I stumbled through my never-ending days, when my own collapse would come.
I’d taken precautions of course. When you have RA as your constant companion you cannot ever go without protection. I fortified myself by increasing my daily dose of Prednisone by an extra 4 milligrams on The Day After, as it will be forever known in my mind. I had already made the decision to stay on 1 mg forevermore. I want quality not quantity, I’d told my rheumy. He understood perfectly; he deals with the demon himself.
And so to forestall the demon rising and knocking me down when I could least afford it, I upped my Pred. That gave me some peace of mind, but still I waited and watched and wondered every morning when I took my dose. Would today be the day? Was it there? Closing in on me? Lurking?
A couple of weeks ago I caught a cold and felt like poop and I thought this is it, down I go. Thankfully, it happened after he’d been given the green light to drive. How’s that for lucky! I could give in to my cough and my sniffles and my lethargy as much as I pleased. And that I did, for two whole weeks as it turned into some sort of viral bronchitis.
But eventually, it went on its way and it came time to draw my labs for my upcoming rheumy visit. I was curious as to what the results would show. How bad would they look? I visualized the numbers based on the previous ones when there’d been no life or death crisis to live through. Well, yesterday I found out how they look.
They look normal.
I haven’t been normal, well at least in this way, for twelve years. Twelve long years.
I don’t know why now, and I won’t ask. I’d already started the weaning process of saying goodbye to the extra Prednisone sloooooowly. My rheumy agreed and slowed it down even more. That’s OK. I can do slower. I see him again in December and by then I’ll be back down to the 1 mg dose, which I’d vowed to continue indefinitely.
Time will tell, as it does with all things. For now I’m to continue with the 22.5 mg of Methotrexate weekly. He’s so cautious he wouldn’t let me decrease my dose, not even by one tiny pill. I don’t want to change more than one thing at once, he said. All right then. I can take it. Literally.
So I shall rise above my disappointment regarding that and dance in my happy place.
For just a little bit.
And then, I will resume my plans to go see my precious baby grandson. A trip that was delayed by the events of this summer. I saw him born last fall and God willing I will see my beautiful boy this coming fall when he turns one.
This past Saturday morning I wanted nothing more than to snuggle deeper into the covers and stay there. After a month of early rising and little sleep, I wanted to remain in my cocoon and hide from the world.
The very idea of rising to shower, dress and leave the house when there were no appointments to go to seemed like a punishment I didn’t deserve. But my daughter-in-law had put me on notice.
While we were all consumed with being at the hospital, she quietly took over the care and feeding of the troops, including the out-of-towners. And she paid special care and attention to my granddaughter. We didn’t know what to tell her, she being only six. My first impulse was to protect her and tell her nothing. But how to explain the sudden disappearance of her beloved Pa?
My daughter-in-law handled it all, quietly and efficiently. So quietly and efficiently, I began to feel guilty. My son was a constant at my side, and took turns with me spending nights at the hospital, while his wife was left alone to carry the ball for the whole family.
I made a mental note to do something for her, someday, when I was not so tired, but she got ahead of me. She was taking me out to lunch and a massage she said. And though I reluctantly got out of bed and left the house that morning, leaving my son at home with his dad, I felt a little lighter by the time we made it to the corner a block away.
It turned out to be the right medicine for me. To move away, just far enough, just long enough to breathe free air.
We enjoyed a leisurely lunch of specialty pizza with a lot of much-needed sangria. And afterwards we walked down blistering hot streets to the massage place. Even the boiling sun felt good.
The massage hurt, though I’d asked for light to medium pressure to be applied. Too many tense and knotted muscles in my back. Later when we compared notes, I found out that her massage had hurt too, for the same reason.
Nonetheless, it was a good experience. The dim lighting, the gentle, soothing voice of the masseuse and her otherwise healing touch, the sense of letting go and just allowing myself to be was something I hadn’t realized how much I needed until that moment.
Now I have something else to be grateful to her for. And I still need to come up with something to do for her.
When I didn’t know if he was to live or die, he kept appearing to me.
Not flat on his back in a hospital bed attached to alarming machinery, with snaking lines, twisted together like translucent spaghetti, connecting him to countless, beeping IV pumps. My brain could not accept. I was in a familiar place. A place I knew intimately. A place where one must act quickly, quickly.
I’d been there so many times. So many times.
But not in this way. Not in this way. Not when I could do nothing but sit. Sit and interpret all that was said. All that was not said. I heard those words the loudest. The ones not said.
And to muffle the sound of those unspoken words, the vision would come. I would see him standing in that way of his, one long leg forward, shoulders hunched in just a tad, shoulders wide from years of surfing. His hands by his side, one thumb caught in a pant’s pocket, the tilt of his head with that smile on his face, like he knew, he knew the sight he presented.
He would appear at all hours, day and night. When I least expected it, he’d be there. And I would compare the man in my vision to the man in the bed and my brain would recoil. No, that was not him. Not him.
The him in the bed was unrecognizable. I didn’t know that person. I’d never met him before. He was a stranger, and yet, a stranger that belonged to me.
I didn’t know who the man in the bed would be when he woke up.
Or if he’d ever wake up.
If he’d ever stand.
Stand in that way.
Knowing who he was.
Who we were.
And so I welcomed the man, the man in my vision.
For he seemed to be there to deliver a message.
“I’m still in here.”
And that gave me peace.