Category Archives: Dealing with disease

Peals

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Many moments in my life ring in my ears
Things that I’ve done
Things I’ve not done
Words that I’ve said
Not said

I hear the voices, the conversations
Sometimes they keep me up at night thinking what if
If only
If I could do it over
If I’d had the chance to do it
Once

Sometimes the conversation is only with myself
My now self and my past self
Other times, it’s with that other person
I hear the words as I relive the moment in my head,
the voices clear as day deep in darkest
night

Some are joyous to remember
and I bask in memory’s glow
sinking deep into my pillow
as it lulls me gently into such sweet
sleep

Some have the force to make me cry
as if they were happening anew
As though time reversed itself
and sent me back to suffer pain, again
Why?

One can never know
I can never know
But I’ve learned to live
with the sounds of bells’
peals

Until this last continuous sound,
a noise which cannot be
contained,
maintained,
sustained

No, this incessant din
I will not abide
For it is naught
but an artificial ring
caused only by my
pill

 

***Tinnitus, ringing in the ears, compliments of Plaquenil.
     I’m jumping ship, until disproven.

The Worst Patient

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When I was delivering direct patient care, we were given a two-hour window during which to administer medications. If a med was scheduled for 1 p.m. (1300 in hospital-speak) it could be given between noon and 2 p.m. (1200 to 1400). It was one of the ways Administration acknowledged that we nurses had a lot on our plate and the day was only so long.

I don’t know if this is still the case at the bedside as I’ve been gone a long while now, and I don’t expect to ever return. The curtain has lowered on those days, but I am reminded of that window every time I take my own meds late. Or forget to take them at all.

These days I have only one patient’s needs to meet. There is only one patient for me to give primary care to. Only one patient whose meds I have to keep straight in my head. Me.

And I find that it’s not any easier. One does not simplify things, especially when that one researches and investigates every little thing. And at times does not even comply with the treatment.

I once confessed to the Nurse Practitioner taking my history that I was noncompliant with one medication. She paused in her note taking to look up at me, then we locked eyes and laughed. It’s common knowledge that doctors and nurses make the worst patients.

As it stands, the nurse in me is trying to come up with a workable plan of care for the patient in me. For a while now I’ve been toying with the idea of making a MAR for myself (Medication Administration Record). Or would that be on myself?

We used to get the MARs every day from the pharmacy; they covered 24 hours’ worth of documentation. I don’t need to get as specific, but I would at least need to list all my meds and the times they are due. That way I would be able to check them off, sign off on them so to speak, as I take them. And thereby no longer wonder did I take that calcium this morning? Or that Gabapentin last night?

As it is, there’s no way to tell. I have so many things on my mind, so many things that need to get done. And subconsciously, I don’t want to take my meds. Or more accurately, I don’t want to have a reason to need to take my meds.

But alas, I do.

I already have my phone set to alert me that Wednesday is Methotrexate Day. Unfortunately, every day is Plaquenil Day and noon seems to come around all too quickly. I swear there are less than 24 hours between noons. Or maybe it just seems that way. It’s that old noncompliance thing tugging at me.

So I’m thinking a “MAR” should keep me on the daily straight and narrow. Back when I supervised three separate nursing units, my last task each day was to list all the things that needed to get done the next day. Those were the steno-pad days, before the now ubiquitous computers. I would leave the hand-written list on the center of my desk so it was the first thing I saw upon opening my office door.

And it really worked. I got so much done that first year; it still makes me tired just thinking about it. But they do say that if you write down your goals, they are more likely to get accomplished.

It’s definitely come time to make myself another action plan. I just have to decide on the form, or the format. A dry erase board comes to mind. But I don’t think I can find room on the wall for one that big. Anyway, I don’t want it front and center, spoiling the “décor” of my home office. So I’ll design it on my laptop, then print it out so it can join the jumble on my desk.

I’ll program my phone to remind me to look at it. Or for it.

One Quarter Inch

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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.

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.

There’s Sick and Then There’s Sick

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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.

Knock on Wood

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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.

 

“More Medicine, More Medicine, More Medicine . . . More Medicine”

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She throws up her little hands before pronouncing the last “more medicine.” She is reclining on my bed, relaxing against a bunch of pillows. I am setting up her nebulizer for her 1 pm aerosol when she starts reeling off the “more medicines.” But, she is complaint to the nth degree. She knows the drill. Sadly, she knows the drill.

Her compliance breaks my heart. No three-year-old should be hogtied to a medical regimen. No toddler should be thinking about more medicine. They should be free to run and play and the only concern should be how to avoid naptime. Or how to delay bedtime.

But, here we are. And thankfully, here we are. We can employ the verb “to be.”

Amid all the hubbub of her illness and hospitalization, my “more medicines” became less medicines with my having forgotten my own drill. It hardly seemed important at the time. Vaguely I knew I was due to take something, sometime, and I managed to get around to it, sort of.

I missed some. I know that. My hand knows that. My ex-friend/lover, insidious little entity that he is, came calling. Wanted to renew the relationship. I said OK, for a little while. I kind of like having a flexible right hand. So I let him give me ten kisses today, I mean ten milligrams. Tomorrow I am cutting him down to five.

And I’m thinking I will allow him to hang around for a fleeting moment each day. 2.5 milligrams worth. For a while anyway. Prednisone, he is both enabler and disabler. Need to walk a fine line with this guy.

But in the end, I want the “more medicine” story to be mine, not hers.

 

Double Drat

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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!

Summit

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I’d forgotten the exhilaration. The heart pounding, the sweat pouring, the lungs breathing oh, so deeply.  The oh, so alive feeling. The crescendo, up and up and up, to that mountain peak, that climax so delicious when reached. My legs working at maximum expenditure, my arms reaching, my hands grabbing on so very tightly, holding on to that life-giving force.

No, I’m not talking about sex, though that does have its virtues. Especially with someone you love. I’m talking about exercise. It used to be my almost daily routine, more so than not. I looked forward to it. I longed for it. My stationary bike called to me, come, come, come.

And I would come. And then stay, for a long while, an hour, an hour and a half. I pushed and pushed, faster and faster, to find the limits of my endurance. I wanted to know how far I could I go, how many miles on my bike that went nowhere. It would keep track for me, if I so requested. Sometimes I didn’t want to know distance; just time and it would comply. I wanted to know how long it would take to hit my summit.

But, I never reached that climax, that peak. I found I could go on and on and on.  The only thing stopping me was will. How long I wanted to ride. It was a race against myself that I could not lose. No matter how hard I tried.

Until I stopped. I don’t even remember the exact reason. Some emotional upheaval. Some physical flare-up. Something I let beat me, suspend me, interrupt me. And that led to a very real flare, a flare we all know only too well, those of us who can claim RA as an unwanted companion. It took my hand, my right hand. Tried to claim it for its very own.

I gave in to the pain. For a little bit.

I let myself be led into a big dark hole. For a little bit.

And then, I fought back. And I will continue fighting back. Forever.

I’m back in the saddle and wondering about a little nugget I picked up during my daily reading.

What’s this about women reaching orgasm during exercise? Interesting. . .

Sleep-Inducing Figs

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With the help of steroids, I can hold and wield my pen. It is miraculous. Pen and paper are my friends. Friends that do not abandon me. Friends that do not betray me. Friends that do not grow tired of me. I carry them wherever I go. I write whenever I can.

I do not hesitate to write all over the white space of the latest book I’m reading. It is a book on writing creative nonfiction and the juices stir. Not even the margins are safe from my flying pen. While I wait during the interval between the Physician’s Assistant and the Rheumatologist, I scribble.

I scribble with my new pen; it feels right in my hand. It is where it belongs, the purple ink flowing resplendent among the fine black text. I’ve been reading an essay about artistic space. How you should carve it out of nothing if you must. How you must value it and not let anything take it from you. How you must snatch it from the very jaws of life.

Because life will attempt to take it from you, snaking out tendrils of despair to coil around your creativity, thereby starngling it. If you allow  it, if you succumb, it is akin to eating “sleep-inducing figs.” Partaking of this poison dish allows you to go through life somnolent, numb to the call. Under the influence of a narcotic that makes you quiescent.

The author’s words resonate with me. I recognize myself. I hear her; she is writing about me. About what has been me, so far. There has always been something else to do, someone else to do for. Compulsively, I would begin pieces, stories, journals, only to abandon them before finishing. Later, I would tell myself, I will write later.

Sitting in my doctor’s office, I realize later is now. Later must be now. I block out the sounds of both hesitant and purposeful footsteps along the hallway. I ignore the office staff’s susurrus voices and the other patients’ nervous responses, and I write. I write furiously and needfully, dreading the moment I will have to stop, my brain a flurry of words, thoughts and feelings.

I marvel at how I can grip my pen so easily, without pain. I feel grateful for this simple gift. I am nothing without a pen in my hand anymore. I jealously guard these moments while the margins of my book disappear in a sea of purple. Every few minutes, I glance toward the open doorway; I am like a starving man guarding his food. Words are my sustenance.

Eventually, my doctor walks in and, reluctantly, I close my book. We talk, we plan, we concur. I’m to stay on steroids to control the pain. I’m to see a pulmonologist to evaluate the persistent productive cough. He reaches for his phone and immediately contacts that office for me. They will call you shortly to verify the appointment, he says.

I gather my things and stand up. He smiles and shakes my hand, holding it gently, always so gently. I walk out of the hospital in which I worked for eighteen years. In the parking garage, I decide to walk up to my car. My body feels light as I climb the sunny open stairwell. When the door to the fourth level slams shut behind me, I realize the only sign of my exertion is a fire in my chest. And that fire makes me feel strangely alive. Acutely awake.