Category Archives: Resilience

The Pain of Thawing

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.

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There’s Sick and Then There’s Sick

I’m sitting here with my feet up, reading, catching up on the day’s news and an article caught my eye.  A lady with two special needs children found a nasty note on her car because she’d parked in a handicapped spot.  It brought to mind a blog post I’d read from a fellow RA sufferer (her blog is no longer available, hope she’s OK). She wrote about needing extra time to get to her seat in the movie theater and how other people gave her impatient stares.

And it made me remember being on a forum a long time ago and reading a teacher’s comments about RA. She wrote that it was very hard for her colleagues to understand how much pain she was in because she didn’t look sick. She wrote that she cried herself to sleep. I responded that my physical pain was so severe in the mornings, I cried myself awake.

That has to be what stings the most from this insidious disease. Unless we use something visible like a cane or a wheelchair, we appear perfectly capable to the naked eye. We don’t look sick.

But we are.

My feet are up after a busy morning. It started out with Tai Chi class, which is worth two feet and more. They didn’t hurt during the hour and a half that I was on them, shifting my weight from one to the other as I went through the moves.

And they didn’t hurt while I hung around discussing the needs of putting together the upcoming Fall Festival Banquet. I signed up for the setting up; I figure both quilts in my queue will be done by then.

Nor did they hurt while I shopped for more fabric. Put me in a fabric store and I’m like a kid in a toy store, or maybe the candy store. Who’s thinking feet?

But once I got home and took off my comfy tennis shoes, my feet said, Time out, Sister! I can walk, but I see stars. And no, I don’t need a cane or a wheelchair just yet. All I need to do is rack up a few hours’ rest and I’ll be good to go.

And there’s the difference between my sore feet and the author of that note. For that person, there might not be enough time for a cure.

About This Blog

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.

Knock on Wood

prednisone

 

I have escaped the clutches of this little entity once again. The first time we met was after I ended up in the hospital with a pleural effusion and a pericardial effusion eight years ago. That’s how I was formally introduced to Rheumatoid Arthritis. It did not come calling lightly.

Instead of the chest tube I visualized upon hearing my diagnosis from the ER physician, I was put on a steroid regimen. A drug I’d administered countless times to my patients now became my lifeline. For a while. After several months, I successfully weaned off and stayed off, until this past year.

It started back in February of 2012. My right hand became so painful; I could barely run a brush through my hair. The pain soon had a stranglehold on my hand and on my day.

Forget cooking, forget housework, forget laundry. And worst of all, forget my bike. I couldn’t hold on to the handlebars with just one hand and remain steady as I pedaled. The endorphins my exercise produced were canceled out by the electric fire of pain. Anything that touched my hand sent an exquisite shooting pain up my arm. The joint at the end of my index finger was swollen into a ball and I had to use a brace to keep the finger immobilized.

Eating became a trial. I could barely hang on to a fork, and wielding a knife became an impossibility. It was the same with a pen. I think that hurt me the most, not just physically, but in my soul. Even so, I stubbornly wrote volumes of notes for a friend while I sat in the library. My ace-wrapped hand a blinding nest of pain, I held that pen and I wrote and I wrote. RA was not going to deprive me of even that.

I moved up my regular appointment a few weeks, but I still had to wait too many days before my rheumatologist could see me. I feared a cortisone injection was coming. I was afraid I’d wimp out at the sight of a needle going into my hand, though needles going into my arm every two months doesn’t seem to bother me.

But, he didn’t touch my hand and there was no mention of needle sticks. One glance sufficed. “It’s a wonder,” he said, “how RA can knock you down. Just one affected joint can immobilize you.”

Oh, yes.

Enter Prednisone. Ambrosia of the gods, it seemed. In short order, it gave me back my hand. Handed me back my life.  It became my crutch. I welcomed it and it moved in, lock, stock and barrel.

Oh, I tried to evict it after a while. Several times I started on my journey to displace it from my life. But then my hand would hurt and I’d run back to its protection, its shelter, its sanctuary. I was afraid of the pain, but I was terrified of my immobility.

Pain I could deal with. Loss of independence, I could not. So, I sought my fix. A literal fix, a repair. I turned and returned to the tiny white pill that had restored my life to me.

My attempts to sever that relationship continued, however. I did not like the dependence. I did not like how a bunch of little pills controlled me. The Methotrexate I accepted, the Prednisone galled me.

I began a hit and miss schedule. If I remembered, I took it. And many days I would conveniently remember to forget. Every morning, I’d flex my hand. There would be some tightness, some stiffness, some soreness, sometimes. Most days, my hand felt fine.

My labs have come back normal the last two visits. My CRP, sed rate, all the numbers fall where they should. The Prednisone stays in its bottle. And that stays in the medicine cabinet.  I give myself permission to hope that it also stays in the pharmacy.

Now, if you’ll excuse me, I’m going to go knock on wood.

 

Eyeing the Eye

I find myself threading a needle these days the same way I sometimes had to start IV’s. Not because I can see the target clearly, but because, innately, I know where the target is. Seems I had a lot more success finding those hard-to-see veins than I’m having finding the apparent eye of a sewing needle.

Though I miss my bedside nursing days, I knew that eventually my body wouldn’t be able to handle all those hours on my feet. I accept that that is the way it is and I’m OK with it. That was then and this is now.

But, I never factored in my eyesight when I thought about entering decrepit old age. Other than reading glasses, I don’t need corrective lenses. At least, I didn’t at last year’s checkup.

My ophthalmologist did put me on “eye vitamins.” Giant capsules that contain mega doses of several vitamins. I guess I’ll find out if they’ve helped my eyes when I go back to see him. The one thing they have done is make my hair and nails grow exponentially fast.

And that’s great, but I would prefer to be able to thread the sewing needle exponentially faster. My years as a nurse brought me much satisfaction and I had to thread that IV needle countless times. (Threading is what we call advancing the catheter while simultaneously withdrawing the needle.)

Alas, my fingers have lost certain dexterity, age plus RA, don’tcha know. But I can still quilt, something I took up years ago as my nursing days waned. Maybe I just have to be around needles, I don’t know. I just wish I could see that freaking eye a whole lot better!

Quilt just finished. It had 70 thread tails to be worked in. I had to thread that needle 70 times!

Quilt just finished. It had 70 thread tails to be worked in. I had to thread that needle 70 times!

Next up, Spring Flowers. A quilt for my Tai Chi group's Chinese New Year's raffle.

Next up, Spring Flowers. A quilt for my Tai Chi group’s Chinese New Year’s raffle. You bet I’m gonna minimize the amount of thread tails on this one.

Last year I decided to take a picture of my hands every year. A visual track of RA's effects. So far so good, though my right hand is the worse for wear.

Last year I decided I would take a picture of my hands every year. A visual track of RA’s effects. So far so good, though my right hand is the worse for wear.

A year ago.

Picture from a year ago. My rings serve as a “barometer” to gauge morning stiffness and inflammation. When they are loose on me, it’s a good day.

I Storm Electric

Tarsal Tunnel Syndrome. Am I weird or what? For all the typing that I do, I should have Carpal Tunnel Syndrome instead. But, that is what Dr. R., my rheumatologist, says.

Only after researching it, I’m not so sure. I don’t have many of the supposed symptoms. My ankle doesn’t hurt, my toes don’t hurt, my foot is not swollen, my leg is not painful. In fact, the only symptom I have is the positive Tinel’s sign.  “A tingling electric shock sensation that occurs when you tap over an affected nerve.” (Wiki)

I have that in spades. This morning I scooted up on the bed to see if the gardener was in my back yard, and Yowza! The top of my foot pressed against the bed and instead of green grass I saw stars. Not sure what color those were.

He wants to see me in six weeks, as opposed to the normal two month interval. I suppose given time, I might develop those other symptoms. His plan is to do nothing, but wait till then. And if it doesn’t get better, he’ll stick a needle in there, by my ankle. Oooh!

“I’ll think about it,” I said.

I’ll go along with his plan and wait. But, I think if I need needles stuck in my foot, I may go to the man who knows my feet intimately, Dr. L. He’s such a trip.

For now, I’m just happy that my foot doesn’t bother me 24/7. And only my strappy sandals cause me pain. I can walk, I can dance, I can pedal my bike at 20 miles an hour.

So I give thanks. And hopefully, this case of neuralgia resolves itself, as Dr. R. said it might. I will think good thoughts. I don’t need any more electrical impulses shooting through me.

(Note: I had reserved this title for a series of naughty poems I’m writing. I couldn’t resist using it here. Should I post them, they will go in my other blog. I will advise. Hey, whatever gets you through the day!)

Joy Street

When I was a young girl my father gave me two books. When he brought home the first book and held it out to me, a gesture accompanied with his usual silence, I accepted it gratefully. Until that day, I had not known that my father appreciated my love of reading. Up until then, I was not aware that he saw me that clearly.

I do not remember if I spoke, if I thanked him, but the look on my face must have been thank you enough, because later on he brought me another one.

These books became treasures to me and I guarded them reverently. To me they held a meaning beyond their story. They were proof of what could be done with words; evidence of what intricate power could be woven between two simple cardboard covers.

There was no greater gift, besides his love, that he could have given me, because you see, these were not store-bought books. They were books salvaged from someone else’s trash can. My father’s job was to drive a garbage truck. And I imagine that before he was “promoted” to driver, he was one of the men who picked up the trash cans and dumped them into the back of the truck.

How he noticed that there were books amidst the trash from his perch inside the cab, I don’t know. But just as he’d noticed that his little girl loved to read, so he espied those books and brought them home to her. I read and reread these books countless times, though one was missing the last half of its last page. It would be many years before I knew the ending to that story.

And as they gradually fell apart in my hands, these books served as propellant for my own writing. I accumulated notebooks full of stories, stories that my English teachers praised and led them to encourage my endeavors. I dreamed of going away to college to study journalism. For hours at a time, I would disappear into my own little world dreaming up stories, and reading and writing.

My mother did not understand or accept this as there were four younger children she needed my help with. One day when I was fifteen, I came home from school to discover that everything had been thrown out. All my writings were gone, and worst of all, my books.

The loss left me devastated and I stopped writing, for decades. And what made my pain worse was the thought that my mother had probably coerced my father into helping her discard my things. The irony of him having to return those books to the trash heap made me laugh, as well as cry.

I took this assault on my psyche in stoic silence. I was my father’s daughter and I said nothing to no one. Since then, I’ve never been able to talk or write about this and few people know about it. I bore this event in my life as a mark of shame, though I don’t know why. And as a result, I have never gotten over it. It has hurt to this day.

A few months ago, I did manage to relate this story to my daughter-in-law, with my voice only breaking once or twice. I didn’t realize how intensely she’d listened until I opened my Christmas gift from her.  It is an exact replica of one of my missing books, the one that had the last page ripped off, Joy Street by Frances Parkinson Keyes.

The last page on this copy is intact, however, and now, so am I.

I want to wish all my readers a Merry Christmas and may joy street always find you.

I want to wish all my readers a Merry Christmas and may joy street always find you.

 

Shoes, etc.

I did ten miles on my stationary bike today. I decided, while I was pedaling, that I would keep track of mileage as well as time. That way I could take an imaginary trip around the world while I engage in this endeavor. Though I do hope I don’t have to go all the way around the world to lose the extra pounds I have on board.

To document my origination point, I weighed myself this morning. It kind of hurt, but I’m a big girl (!) I can take it. Once the numbers stopped fluctuating on the scale readout, it settled at 149. According to my BMI, I should weigh no more than 136 for my height of 5’ 2”. But, I felt fine and looked fine, so I was told, when I was at 138. So that is where I’m headed.

And since ten miles is the distance I used to travel taking my youngest to school and that was south of me, I guess my “circumnavigation” will commence in that direction. Hopefully, I’ll hit my target weight before I “reach” the South Pole.

If I were truly headed down there, my gear would be a top concern. But since I will only be biking and walking in South Florida weather, I don’t need a parka, et al, just good shoes. After spending almost 30 years on my feet during my nursing career, I am especially conscious of good, supportive footwear.

SAS were my shoes of choice; they cushioned my feet and were worth every penny. I had my last pair for over five years, but then I began working out in earnest and wore them out within eighteen months. I meant to replace them, but then I found these.

Bought them at Macy's. They are Clarks shoes.

Bought them at Macy’s. They are Clarks shoes.

Love these shoes! They feel like I'm walking on air. Hope they hold up to the workouts I'll be putting them through. Hope I hold up!

Love these shoes! They feel like I’m walking on air. Hope they hold up to the workouts I’ll be putting them through. Hope I hold up!

And of course, my vehicle. It's a little dusty and rusty. Just like me.

And of course, my vehicle. It’s a little dusty and rusty. But then, so am I.

Our Daily Prompt

Today’s daily prompt says to write our obituary.
My first reaction was eww!
I prefer to write about living,
the joy, the sadness,
the longing, the hope
that makes us go from one day into another.
Because no matter what happens today,
whether it’s good or bad,
uplifting or devastating,
we go to bed knowing
there’s always tomorrow.