Tag Archives: Health

One Quarter Inch

One of the most unexplainable things is hand pain. Undescribable and indescribable.

Another is the absence of hand pain.

You cannot know one without knowing the other. If you’ve never had hand pain, the kind that makes you want to chop them off, you cannot relate to hands that have stopped hurting.

The pain consumes you and sabotages every act you engage in, or try to engage in. It’s depressive and depressing. “I can see you’re not feeling well,” my doctor said a few moments after walking into the exam room on my last visit.

Body language. My body had spoken volumes without my saying more than hello to him. I smiled. No need to add words to what my body screamed out loud.

Later, when he went to bend my fingers one by one, as he always begins his exam, he noted that there was more tension. My fingers were harder to bend. More tension in fiction is great, in my fingers, not so much.

But, I refused to give in to it. During this flare-up, I made two quilts with those hurting hands. Hands that could, once again, barely touch forefinger to thumb.

So while making this last red and white quilt, I came to a decision. I would make a concession. I would no longer do hand-stitched bindings. Instead, I would machine stitch them. And that meant I would have to cut the binding strips wider, not 2 and 1/2 inches, but 2 and 3/4 inches wide.

These days I am feeling lots better, My fingers are much more pliable, and machine stitching the bindings will speed things up, making me far more productive as I head into the holiday season.  But now, I have an exact measure as to how much this latest skirmish has cost me. How much ground I concede to RA this time.  Exactly one quarter inch.

quilt

Inspired by this site.

quilt

A wall hanging I made for my granddaughter’s first birthday. How time flies.

High Noon

I felt like Gary Cooper
and his beleaguered Marshall Kane
Danger threatened from without
while the threat drew ever closer,
as the clock marched on towards me

There was no stopping at the church
to ask for some assistance.
Though the church did stop by me,
in the person of my neighbor
Say a prayer, she said to me,
ask for a drop of blood from Jesus
My brain recoiled at the thought,
but I smiled and said nothing
as I walked her to the door

Nor did I make my rounds
searching help from every corner
or try to call in favors
from them not so afflicted
Had there been will to help
there was nothing they could do

Instead I took the time
to mull things over all alone
To come up with a strategy
in how to deal with these offenders
There was no way to fend them off
No, there was nothing to be done,
but to inch myself on forward
and take my chances as I went

But, I had to choose a time
for the train to chug right in
That being the one sole thing
under my limited control

And so I chose high noon
then stood up resolute
Straightened up my RA badge,
and walked outside to meet them
Into the middle of that dusty road
where I confronted them head on

Two came up side by side
small and, seemingly, inconsequential
But what they lacked in size
they made up for in great baggage
I am to be their porter
in this never ending dance
For I must relive this High Noon
for as long as I can see them

***

Plaquenil and its side-effects gang.
Two little pills to be taken at the same time every day.
I took ten days to think things over and then took a deep breath and dove.

 

 

 

 

Quality vs Quantity

quilt

 

As I toil away on the next quilt, I notice that repetitive motions make the going difficult. 

I find that if I mix it up, the cutting, the pinning, the stitching, the pressing, it goes much easier. My body doesn’t get the chance to stiffen up and ache.

So I stand at my cutting/work table for a little bit. Then sit at my sewing machine for a while. And from there, I stand at the ironing board pressing each piece just so. Always pressing toward the dark side.

I always laugh when I think of it, the dark side. The idea is that the seam allowance won’t show as much if you press toward the darker fabric. But I can’t help thinking that applies to life itself. At least, to mine.

RA is the dark side. Trying desperately to recruit me as a permanent resident. Well, hell no, I won’t go!

I see the doc next week. I will stress quality vs quantity. I am more afraid of pain than I am of death. To me death is nothing more than a library filled with books, real books, and all eternity to read them.

I am not being morbid. Death comes to us all, as the saying goes. It’s something inevitable, unavoidable. We can do nothing about it.

But, life. That we can do something about. If we want to.

A few years ago I stopped working in order to increase the quality of my life. I’d lived in a fog. Pain had taken over the driver’s seat and left me trailing behind. Only I couldn’t bring myself to actually quit, to sever those long-held ties. So I just didn’t go to work one day. Months later they tenderly let me go with a letter that said: let us know when you want to come back.

Today that fog, that malevolent mist, is circling, beeping inside my radar screen, waiting for the opportunity to make its undesired approach. But I won’t let it land. My little traffic controller is acutely aware of it; it’s been in the trenches before. Surprise is no longer on RA’s side.

Still, sometimes it causes me to do funny things. For instance, I unwittingly wrote this title backwards at first, quantity vs quality. Freudian slip perhaps?

And today, while in the lab’s waiting room, I almost burst out laughing. I went to catch up on my emails and opened my DailyWritingTips newsletter. Today’s topic was on “gratuitous capitalization.”

Only I misread the title. I read gratuitous capitulation.

I’m still laughing. I’m thinking that would make a fantastic title for a short story.  The possible storylines are endless!

BTW, this isn’t what the quilt will look like. I was just playing around with the possibilities. Life is full of them, you know. Possibilities, that is.

Fanfare

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.

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.

On This Earth

A writer I much admire once wrote, “. . . waiting is the tense in which life is truly written.” Those words struck a chord with me when I read them three years ago. They’ve never left me. And sometimes when I am sitting in my rheumatologist’s waiting room, I think of how true those words are.

Reading Billies’ excellent post on waiting reminds me I meant to write about my time spent in that waiting room. While I was there in May, I came to the hard decision of looking for another doctor. Though things flow at a creeping pace at this office, I arrive on time at 3:30 p.m.

At 5:00 p.m. I see the front desk receptionist walk by me with her purse. She hasn’t yet taken my co-pay. I’d signed in and exchanged pleasantries with her and then taken my seat in the crowded waiting room. Deep into my reading, I only entertain a passing mental query as she goes by. After all, there is other staff.

At 5:30 p.m. the tech who does the preliminary workup, vitals and the dreaded weigh-in, sees me through the open sign-in window. “Did they pull your chart?” he asks.

I shrug my shoulders. How do I know?

He walks around and opens the door for me. “I’m sorry,” he says, as he escorts me toward the back. He chats with me as he works, asking how my writing is going. Fine, I say.

Before I’m shown to an exam room, I have to go up front and give my co-pay. “I can’t take a credit card. It’s after five,” says the young girl left at the front desk.

I shrug again. Not my problem. I’ve been there more than two hours by then. Somehow she gets it done.

I text my husband: “Two hours and haven’t been seen.”

“Unacceptable,” he fires back.

Sometime after 6:00 p.m. the PA comes in and makes himself comfortable. He takes an extensive history, dating from my last visit two months previously. He conscientiously taps onto his laptop my every utterance it seems. He asks me how to spell a word; I tell him. “I hate English,” he says with a sheepish grin. “It has its quirks,” I say.

He spends over 30 minutes with me, typing, chatting. I feel like I’m with family, the whole process is so familiar. With a shake of the hand he leaves me to my reading and waiting.

Around 7:00 p.m. my doctor walks in; smiling, he extends his hand towards me. He’s always smiling and he always shakes my hand. “How are you doing?” he asks. “Sorry about the wait.”

“It’s OK,” I murmur.

He meticulously reads what the PA wrote, then reviews certain comments/complaints. Satisfied with my responses, he asks me to step up onto the exam table.

He bends every one of my fingers by turn (ouch), then has me lie back and proceeds to bend my legs, my arms (no problem there), and listens to my heart, my lungs. He guides me to sit up and then checks my eyes and inside my mouth searching for RA’s sidekick, dryness of the mucous membranes. All checks out and he goes back to the desk. I step down and go sit across from him.

He checks his phone researching something for several long minutes, then comes to a decision regarding my current medications. He goes over the protocol with me. “You’re doing very well,” he says with that smile.

Returning his smile, I lock eyes with him for a moment. We are coming to the end of this slow-moving ballet we’ve engaged in for almost a decade.

And I remember why.

Because of him, I remain here, on this earth.

We shake hands and I make my way to the front desk. I schedule my next appointment, then exit the office. It is now 8:00 p.m.

Written for: Weekly Writing Challenge: Fit to Write

In So Many Ways

I’ve settled into a Tuesday and Friday Tai Chi class routine. Granted it’s only been one week. But it feels good. I’m renewing friendships and meeting new people. I met the lady who won my Native American Culture themed quilt at the raffle. (See my post, Done!) She was ecstatic and stopped the class to verify I was the quilter. “I love it!” she said. Talk about a shot in the arm, gave me renewed vigor to finish the class.

I’d wondered if my legs would hold up. It’s all a matter of shifting your weight from one leg to the other as you dance your way through the 108 moves. All this weight-bearing helps build bone, something mighty useful to me now. But I needn’t have worried, my legs remembered. They held up admirably, while the rest of me had a harder time remembering some of the hand moves.

Though they started the same week, these classes are independent of each other. That means that on Friday I get to repeat what I learned on Tuesday. This works well as I am a perpetual beginner, having yet to complete all 108 moves. Monday and Wednesday classes start in two weeks and I plan to take those too.  There’s nothing like reinforcement. And camaraderie.

And I have another reason for taking all these 10:00 AM classes. They will help me to structure my day so I can fit the most into it. Freelance editing is occupying more and more of my time, and that’s a good thing. But working from home, I’ve let myself maintain a non-schedule schedule, working all hours of the day or night. There’s been no clock to punch, and no boss but my lenient self. As long as the deadline is met, your client doesn’t care when you work.

But now, I need to adopt a daily discipline so that I can accomplish all I want to do. Such as my own writing (my WIPs won’t write themselves, sigh), and then there’s my quilting. I do want to keep up with it, and I plan to make a bunch of children’s quilts for the homeless shelter our Tai Chi Branch supports. For Christmas.

So you see, Tai Chi to the rescue. In so many ways.

Fluid

It’s been kind of a bad year, health-wise, but life goes on and tomorrow I go back to Tai Chi class.

I didn’t realize how much I’d missed that social interaction until I saw the familiar friendly faces when I stopped at the Center to drop off the quilt I’d made. And how much my body missed the physical poetry that is Tai Chi.

Below is my blog post from August, 2011, called In The Zone.
My goal is to recapture the fluidity I had then.

~~~

Standing tall, I take a deep breath as I raise my arms straight out to shoulder height. My open fingers mimicking a falling rain, I lower my hands to waist level. They float toward each other, palms down. My right hand then slices the air like the flat of a blade leading me to pivot on my right heel in that direction. The left foot adjusts its angle and I “drop” into position, bending at the hip and flexing my right knee.

Poised in a protective stance, I sense strong energy pushing back on my extended right hand, pressing against my outward facing palm.  I am holding it back away from me, keeping it at bay. My left hand, palm down, hangs low in front of me, guarding my center, shielding my core. I hold this position for a moment, letting the opposing force know I am ready and prepared for it. I am invulnerable.

Standing tall again, my right arm gravitates down while my left arm rises towards it; they cross at the forearm, as though suspending something in front of me, something round. I visualize a delicate sphere, it is my world; I am hugging my world. I am the unbroken shell surrounding it. No harm will come to it as long as I cradle it, making it invincible.

My weight resting on my right leg, I lift the left foot and step out on the diagonal, advancing against the unseen force. The motion is fluid, my left hand leads; my body follows, turning to confront that which comes at me from yet another direction. I allow my body to flow with the motion. I concentrate and think of nothing but continuing with the synchronized moves. I am part of a formation, a phalanx, performing a silent ballet. I am in the zone, the Tai Chi zone.

The dance progresses; the right hand moves up by the left shoulder and forms a fist. The left hand retracts against the body gathering energy then pushes back as the fist lashes out. The fist continues its momentum coming to rest by the right hip; the body follows its arc, swinging to the right, back foot pivoting on the toe. I am now crouched and ready to strike. I push that invisible force back once more and step forward with purpose, delivering my right-handed thrust.

I do not fight any one person in these pseudo matches, though I do face an enemy. Locked in a pitched battle against my personified disease, I withstand and do not cower. It is a contest I engage in daily, this struggle to gain and maintain my equilibrium, to meet the challenge of life’s burdens and its inequities.

When I practice Tai Chi, I achieve a level of serenity and all around peace no other form of exercise can give me. My worries succumb; my stressors evaporate. The poetry of the motion is beautiful and graceful, the camaraderie of performing it with others comforting and soothing. Performing it in solitude becomes meditation in motion. I withdraw to my innermost self and find medicine for my soul.

~~~

tai chi

In case anyone wants to join us!

tai chi

We are the largest Branch in the country and the most diverse. For our 20th anniversary, I printed out flags for all the different countries represented in our Chapter. I then had to figure out how to place them on the cake. The answer came to me at the party store. Swizzle sticks!

Off-Kilter

And so it begins. My succumbing.

To Bisphosphonates, that is.

I have resisted for over two years, or longer. It’s been a tug of war between my rheumatologist and me. I am the first to admit, I am not the most compliant of patients. I didn’t like what the literature had to say about these drugs and I chose to abstain, after consuming them sporadically for a few years.

His one complaint about me, to my hearing at least, is that I read too much. But, I believe your health care is a compact between you and your doctor. I’m sure a lot of that has to do with my being a nurse. I always saw doctors and nurses working in partnership, in tandem, though they didn’t see that way for the most part.

Now this particular war is over. My bone density test wasn’t pretty. Wasn’t exactly earth-shattering, excuse the partial pun, but it’s come time to grit my teeth and swallow. I don’t even know what he ordered. If it’s something I have to take once a week, or once a month, or . . . never? I just know it’s ready and waiting because my pharmacy texted me before I even reached home from his office. “Irma, your order is available for pickup.” Shouldn’t that be ‘pick up’? Two words?

Digital-age surprise awaits me tomorrow. A little pharmaceutical gift. Another modern medicine marvel to join the ones that already make themselves at home in my medicine curio. One positive in all this is that Prednisone gets kicked to the curb. Or I should say, gently eased to the curb. It doesn’t like any rough stuff, but as it likes to eat bone, it’s got to go. We might have to add another ingredient to my RA cocktail to replace what benefit I derived from it, but time will tell what and when.

I can’t complain, though. The other thing he says about me after every visit is: You’re doing very well. I suppose everything is relative. To him. But, I do feel a little askew. And maybe that’s why I subconsciously chose to place the borders to my panel quilt off-kilter last night.

quilt