Tag Archives: Resilience

Re-Purpose

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I spent a couple of days last week repurposing some sheets.  My-daughter-in-law had given me a queen set when they’d upgraded to a king. It’s soft bamboo fabric, but the bottom sheet wouldn’t stretch enough to go over my mattress. So I lopped off the elastic and turned it into three pillowcases. I also had cut up a sheet of silky, white cotton and I turned that into two more pillowcases.

I like the idea of repurposing. It’s what I did when my fingers were making me suffer so. When my thumbs, index fingers,and middle fingers were taking turns developing fissures, and were consistently in different stages of breakdown and healing, I called on my ring fingers and pinkies to pick up the slack.

I repurposed them. And they, like troopers, jumped to the task. They became my go-to fingers, to work my cell phone, my tablet, even my keyboard. They went above and beyond the call of duty, and the same fate thankfully did not befall them. Though I lived in constant worry that it would.

I was advised by my doctors not to wrap my fingertips with adhesive bandages, which I had been doing every single night in order to keep the prescribed ointment from rubbing off on the sheets while I slept. Too much stress on your skin, they said. Use white cotton gloves, I was told, so I ordered some.

But alas, once I put them on, I could not use my gadgets. Their screen needed to feel my warm, live fingers, apparently, and I cannot go to sleep without reading myself to sleep. So I said, I don’t need all my fingers covered and chopped off the parts of the gloves I didn’t need. I digitally altered them. Problem solved.

They look funny, but it works. And it’s easier to work my gadgets with my own digits than to use a stylus pen. Don’t have to worry about where I last left them. And it looks like I am making my way out of the woods. My fingers are on the mend. (Knock on same woods.)

Just one of the many twists and turns life makes you navigate. But with purpose we go forward, and when that purpose is thwarted, re-purpose.

 

 

 

 

 

 

Journal: The Undertow

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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.)

Life, etc.

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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.

 

A Revelation

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handwritingI’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.

hand

The Body Shop

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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

Writing To You From Flare City

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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.

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My Daily Bucket

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photo (7)When I arrived to care for my toddler granddaughter a month ago, I was presented with this bucket. It bears a butterfly made with her footprints. “I will put it in my office,” I said, immediately wondering what kind of plant I could put in it once I returned home.

Meantime, I placed it on the dresser in my room, and it occurred to me that it was the perfect place to hold my pill bottles. Up and away from curious little fingers.

I’ve reached a point in my life where I don’t have to worry about where I place my pills. Though they each have a certain “home” in my house, it mattered not where they went. Now, I have to be conscious about the whereabouts of my concoctions.

What’s in the bucket? Prednisone, my frenemy, 2.5 mg once a day. I’d weaned off, but after a week my hands were hurting so bad I had to cave and go back on it for the duration. When I was young and raising my children, I had no idea the workout my hands took. Now every twinge reminds me that caring for a toddler is manual labor. Though with great and bountiful rewards.

There are days where my hands still hurt, like today, and my wrists as well. Foreseeing that, I packed a wrist brace, which I’ve had to use several times. I wear it at night and in the morning the pain is gone or diminished. Perhaps it’s mind over matter, a placebo effect, but I’m not questioning its efficacy.

Also in the bucket is Folic Acid, the rescue drug for Methotrexate. Nuff said. I take MTX on Wednesdays so it doesn’t rate a place inside the bucket.

There’s my eye vitamins, prescribed by my ophthalmologist. They contain Vitamin C, Vitamin E, Zinc Oxide, Copper, Lutein and Zeaxanthin. I’m supposed to take them twice a day, but usually take it once. They are mostly prophylactic. My “apple” a day, you might say. Or maybe, the apple of my eye.

There’s Vitamins B1, B6 and B12, prescribed by my PCP to treat shingles pain. It is now almost 14 months since I had shingles, but the pain is not completely gone. On a scale of 1 to 10, it is a one, sometimes a two. It depends on how that part of me is affected by my activities. But it took its sweet time climbing down that ladder. I was scared  to death worried it would be a 10+ forever.

Also in the bucket is acetaminophen (the ingredient in Tylenol). Since Naproxen and/or Plaquenil gave me tinnitus I have to stay off NSAIDS (non-steroidal anti-inflammatory drugs).  So, hello, acetaminophen, which I take once or twice a day. Some days none at all. The good days. The tinnitus is practically gone. I only hear it when I concentrate on it. And I don’t have much time to concentrate on it right now.

And of course, Vitamin D3 and calcium  supplements, which also contain D3. I’ve been on Vitamin D since 2006 and I give it much credit for my turnaround that began in 2009. I know it was a mix of things that allowed me to rise to the surface and breathe again, but Vitamin D was a major factor. I take 2000 IU’s a day. Each calcium tab gives me another 500 IU’s, so I end up with 3000 on most days.

It would be nice to say that is the extent of my personal pharmacy, but no. photo (2)

In a large Baggie in my unmentionable’s drawer are:

Gabapentin, in case of more severe shingles nerve pain,

the MTX,

Naproxen, if bursitis rears its ugly head again, I will have no choice but to bite the bullet,

the Fosamax, which I’ve yet to start. I know, I’m bad,

and most important of all, cyclobenzaprine (generic for Flexeril, a muscle relaxer). My rheumy prescribes it for sleep. And we know if we don’t sleep, our pain is that much worse. I take 5 mg nightly and when it’s been a painful day I take ten.

No longer in the bucket, its empty husk having joined the inhabitants of Baggie World, is Acyclovir, the antiviral my rheumatologist ordered for a year to prevent a shingles recurrence, Lord forbid. I ran out a few days ago, but I’ve crossed the year mark and now I cross my fingers. We shall see what, if anything, develops.

 

 

 

The Pain of Thawing

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Snow in New York City Photo credit: Emilia Navarro

Snow in New York City
Photo credit: Emilia Navarro

I remember. The crisp clean air, cutting through you like a knife, the painful jolt of it as it burns through and hits the lungs. The brittle blue sky dome stretching tautly overhead. The bare tree branches wrapped in brilliant crystal, nature’s luminescent ornaments. The quiet of the icy day, for though there are other’s sounds, the cold has blocked your ears.

I remember the slush on the roads, the slipping and sliding away, sideways, along the street hoping no one crashes into you while you work to concentrate, turn the wheel into the skid, yes, into the skid, pump the brakes ever so lightly. Think, think, think, in slow motion, yet it all takes no more than several seconds.

Then back on the road again, like nothing happened, until it does once more. Boots crunching on the piled snow along the sidewalks. Boots slipping on the ice, oops, bottom hitting the cold, glassy surface with a sudden sting. Bounce right back up like an Olympic gymnast. No one notices; all too busy keeping their own feet safely on the treacherous ground.

Covered from head to toe, parka snapped and zippered shut. Crocheted scarf wound tightly around neck and mouth and nose. Eyes alone braving the frigid air.

Step by step, you stealthily make your way to the warm enclosure.

And then once inside, the pain of thawing.

***For my daughter, a dear friend and all who are currently braving this brutal winter.

Fanfare

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Flare visited me last Wednesday. He hadn’t been around in so long, I’d not quite forgotten him.

I assume the day dawned dark and stormy for when I woke up I was surprised to see it was already 8:30 a.m. From the darkness of my room, I’d expected it to be at least two hours earlier.

As is my habit upon waking, I went to flex my hands. This time they refused.

They were not only stiff, but painful, and worse, swollen. And as I came to full consciousness, I realized the rest of my body felt the same.

I contemplated the door to my bathroom. Normally, it is only a hop, skip and a jump away. This day, as I moved through the fog toward it, the ten feet in distance became agonizingly longer.

Outside I could hear the raindrops falling on green grass that, at present, was growing faster than I was moving. I knew without looking that the accompanying sky was a dreary, dark gray.

I made my way to the kitchen, to the medicine curio, to down the magic formula that obviously wasn’t working.

I then stepped down to my office; perhaps I could at least catch up on some emails. But the words my eyes saw on the screen did not completely make it to my brain.

Then when the shivers hit, I gave it up. Instead, I backtracked to my bed to wait out the fever my visitor had so kindly awarded me. I knew then, without a doubt, that Flare had arrived with all his fanfare.

About This Blog

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I started this blog a long time ago. At first, I wanted to record and share how I dealt with RA. But then it hit me. It shouldn’t be about how to live with RA. It should be about how to live in spite of RA.

Every day I wake up and test the waters, so to speak. I don’t dip my toe in, rather I grab air with my hands. Most days I can grab a handful and make a fist. And then there are those days when I cannot. Even ignoring the pain doesn’t allow me to bend my fingers.

On those days it can take hours, sometimes four or more hours, before my hands loosen up and my fingers become pliable. This doesn’t mean I can’t do anything at all during these hours. It just means I can’t do anything that requires fine motor skills. I can’t go about using my rotary cutter to cut quilt pieces, or even chop vegetables, unless I want to run the risk of losing a finger, which I don’t.

Sometimes I look at my hands and remember all that they have done. From doing the simple, ordinary care for my own children to performing the intricate procedures required of me during my nursing life. I can no longer depend on my hands to allow me to function in that capacity. And it’s something I miss terribly. I was good at it, dammit!

But RA cannot take away my interactions with others. It cannot stop me from giving to others. It cannot prevent me from helping others, in whatever way I can.

This blog allows me to give, and take. It allows me to share and be part of a community. It gives me much satisfaction to learn from others and to share what works for me, what helps me. Though I do wish I had the answer to one of the most searched items on this blog: how to keep fingers from going crooked from arthritis. How I wish I knew the answer to that. I wish I had the secret potion. But, I don’t.

All I know is that we must stay active, our bodies as well as our hands. We must beat this uninvited adversary at its own game. If it takes motion away from us, we must stay in motion, always. And so besides exercise, I crochet, I sew, I quilt, I type, I write, and I blog about all those things. Perhaps at the risk of giving this blog a “flight of ideas” feel to it.

But all those activities not only help my body and my hands, they also help my spirit. Most days when I look at my hands, I see not only what they have done, but what they can still do.