Category Archives: Hope

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

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!)

Dancing Away, Away, Away

Wouldn’t you know it. Just when I get in the mood to go dancing, my foot starts acting up. I haven’t been out dancing in a few months, what with my trip to see my new grandchild and then the holidays, and then all my deadlines cropping up. Every time my husband brought it up, I was like, “No, not tonight.” And no, I didn’t have a headache.

Now I have both a foot ache and an itch to go dancing. I can dance fine, at home, barefoot. But, I don’t think I can go out that way. I’ve been relegated to using my daughter’s left-behind flip-flops for the past few days. Normally, I can’t stand anything between my toes, but I have to suck it up.

Today I had to go visit the vampires in preparation for my rheumatology appointment next week. Gotta keep tabs on all those pesky little numbers that tell you if your meds are helping or hindering. I didn’t want to go out in flip-flops, as nice as these are. So, I tried my tennis shoes and wallah! they didn’t hurt! It made me fall further in love with those shoes.

They cradle my feet and I can walk without having to favor my right foot. The foot is still sore, but tolerable. As long as nothing presses down on the top of it. As happened the other night in my sleep, when I pressed it against the bed. Almost jumped out of my skin, let alone the bed. Next week I’ll consult with my rheumatologist, see if I can play with the steroids some more. Anything to avoid the podiatrist. I go to the doctor enough already.

Now I just want to go dancing.There’s nothing like losing yourself to the music and leaving your earthly cares behind. The beat pounding in your ears, the music flowing up from the floor through your body, filling your lungs, racing through your bloodstream. The ice clinking in your drink as you sway, sway, sway, unable to stand still. Letting go, you close your eyes and are transported away, away, away. So far away you don’t want to come back.

As JLo says:

Dance the night away
Live your life and stay young on the floor
Dance the night away

Tonight we gon’ be it on the floor

Well, not tonight exactly, but this weekend maybe. I’ll have to figure out what shoes to wear with my slinky little dress. It can’t be my tennis shoes. But then again, maybe I’ll start a new trend?

Double Drat

A few days ago, I woke up and hit the ground running as I usually do. I don’t mean to imply it was at the crack of dawn. I’m a night owl, sometimes up till 3 a.m. when I get involved with whatever I’m reading, writing or studying. After my “morning” ablutions, I stuck my feet in my sandals and proceeded to walk out of my room.

My brain was aswirl with all the deadlines I had pending, finish writing an exam, critique an article, plan a Chinese New Year‘s quilt and finish a Christmas quilt that was promised, ye gods! for Christmas. As I walked out of my room, there was pain in my right foot. But it didn’t really register. The pain was like the squeak of a mouse clamoring to make itself heard above the roar of lions and tigers and bears, oh my.

It wasn’t until a few hours later when I got out of my car and gave that first step to cross the parking lot that the pain shot high enough to solidify in my brain. Surprised, I immediately began to favor my right foot as my nursing assessment skills automatically kicked in.

It couldn’t be my shoes. I’d just been bragging to my husband how comfortable they were. “Most shoes begin to bother me after an hour or so,” I’d said to him. “But these, I can wear all day long.”

“They’re Eccos,” he’d said, as if that settled the matter.

The day before I’d been dancing and jumping around the living room to my favorite reggaeton music. Dancing is one of my preferred methods of exercise. And since I had my granddaughter with me it doubled the fun. My feet were fine while I gyrated barefoot for almost an hour.

What could it be, I wondered? How did I hurt my foot and not know it? How was it that the feather-light suede strap across my foot was suddenly intolerable? As I limped up and down the grocery aisles it four-letter-word hit me. Neuroma! But no, it couldn’t be!

Back home, I managed to unload the car while dodging my demanding 17-year-old cat, Tigress. She can be so annoying when she wants something, wrapping herself around your feet. Once done, I kicked off my sandals and pressed down on the top of my foot below my third and fourth toes. And zing! An exquisitely painful electrical impulse shot forward and the side of the toes facing each other went numb.

It had to be another case of Morton’s Neuroma. I’d suffered from that many moons ago. I knew the drill, but even so I looked it up. One treatment is administering cortisone shots, which is how I’d been treated. The other was surgery. No, thanks.

Me, being me, I decided to up my Prednisone dose. Do a hit and run like my rheumatologist suggested, take a bolus dose and then wean down, all within six days. “It’s easy with you,” he’d said, smiling. “Cause you know what you’re doing.”

Yeah, a little ignorance could bring some much needed bliss my way.

I really, really don’t want to go see my podiatrist again. Last time I saw him was eighteen months ago when he had to cut away an ingrown toenail. I’d spent the year exercising my brains out and since my left foot twists in a little, it can make my second toe lie up against and partly under my big toe with continued stress. I didn’t know the nail was going to end up forcibly embedded, else I would have eased up on my activities.

I’m still smarting from the shot he gave me to numb my foot prior to taking what looked like a pair of pliers to it. It hurt so bad, I called a friend. But, after six or seven follow-up visits, he patted my foot and said, “That’s it. You’re all cured now.”

“You mean the relationship is over?”

“Yes,” he said, still sitting by my feet. “It’s over.” Then we both laughed.

Believe me, I never wanted a relationship to be over so badly. And now it looks like I might have to set up another date(s). I’m not at all interested in receiving his “caresses.” They’re delivered at the end of a needle while I lie in a pseudo dentist chair.

Double drat on that!

To The Future!

Today is the first day of the rest of my life. That sounds so cliché.

Today is the first day of the second part of my life. That sounds horrendous!
Who wants to live 120 years?

Today is just another day, another Saturday in a long string of Saturdays I have lived through. Another Saturday in perhaps a future string of Saturdays awaiting me. I hope not too many.

Both my parents lived another 29 years from the point I’m standing in now. 29 years. I think if I was offered another 29 years, I would say, No, thank you.

If I knew I could live what would essentially be the last third of my life as I am now, the physical status I’m in at present, RA and all, I might say yes. Enthusiastically, yes!

But, we can’t know what is to come. There are no guarantees.

And I suppose it’s just as well.

So, I raise my glass in a toast as I blindly go where I have never gone before.

To the future!!

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.