Tag Archives: Hope

The Man in my Vision

 

When I didn’t know if he was to live or die, he kept appearing to me.

Standing.

Not flat on his back in a hospital bed attached to alarming machinery, with snaking lines, twisted together like translucent spaghetti, connecting him to countless, beeping IV pumps. My brain could not accept. I was in a familiar place. A place I knew intimately. A place where one must act quickly, quickly.

I’d been there so many times. So many times.

But not in this way. Not in this way. Not when I could do nothing but sit. Sit and interpret all that was said. All that was not said. I heard those words the loudest. The ones not said.

And to muffle the sound of those unspoken words, the vision would come. I would see him standing in that way of his, one long leg forward, shoulders hunched in just a tad, shoulders wide from years of surfing. His hands by his side, one thumb caught in a pant’s pocket, the tilt of his head with that smile on his face, like he knew, he knew the sight he presented.

He would appear at all hours, day and night. When I least expected it, he’d be there. And I would compare the man in my vision to the man in the bed and my brain would recoil. No, that was not him. Not him. 

The him in the bed was unrecognizable. I didn’t know that person. I’d never met him before. He was a stranger, and yet, a stranger that belonged to me.

I didn’t know who the man in the bed would be when he woke up.

Or if he’d ever wake up.

If he’d ever stand.

Stand in that way.

Knowing who he was.

Who we were.

And so I welcomed the man, the man in my vision.

For he seemed to be there to deliver a message.

“I’m still in here.”

And that gave me peace.

 

 

That Which is Me

I usually don’t focus on how sick I was. Mayhap I’m hoping that if I “forget” it, I won’t have to relive it.

But I was. Sick, sick, sick. So sick it made me sick to my stomach. You know, holding-the-bile-down kind of sick while you try to function with every single cell on fire, and without letting on how vilely ill you truly are. I even withheld the truth from my rheumatologist. The real one, not the “fake” one who let this disease land me in the emergency room, excuse me, emergency department.

I’m fine, I would say, not letting on that it took every drop of willpower to lift myself off of the waiting room chair, which I’d been locked into for hours, and walk as unobtrusively as possible down the hallway to the exam room. I refused to show that every step was agony. I was a pretender, pretending that nothing was wrong with me.

The lab numbers told a different story of course. Your blood cannot lie as well as you can. But, hey, everyone has an individual tolerance for pain, a pain threshold all their own. Therefore, he accepted my story that it hurt here and there, but not too bad. When in truth the pain was so bad I wanted to run down the street screaming, except that I physically couldn’t do that.

And then, everything changed. I don’t really know if it was gradual or all at once. But I’m pretty sure that what jump-started the process was me taking a breather from my job. That’s all I thought it was. I’ll just rest a few months, I thought. Those months turned into years, and still counting.

And then my kid graduated and went off to college. Check! Last kid launched.

And then, I started to actually pay attention to me. I was no longer a pain-wracked automaton. I was a person, a person with needs and wants. And my biggest want was for the pain to go away. I was feeling better, thinking better, the brain fog was all but gone and I realized that I wasn’t going to continue to go downhill and die.

I was going to live! So I began to celebrate, with spirits. No, not with THE spirits, but the spirits that come in a bottle. In the Before, I could count the drinks I had during a year on one hand and have fingers left over. I went from being a near teetotaler to having one drink, maybe two, in a single week.

And that numbed the pain even more. Not the orange juice with the dash of vodka or the glass of sweet white wine, but the thought that I was letting myself enjoy life, whatever life was still left to me.

And that loosened up my inhibitions, voilà, to the winds. I grabbed my pen and I began to write, and write and write. Millions of words either gushed forth or were purged from my lowest depths. A catharsis, or an enema for the soul, who’s to know?

All I knew, know,  is that my new-found energy and sense of well-being was the biggest high money could buy. I exercised, or maybe exorcised, my bane away. I don’t know what produced more endorphins, my daily workouts or my renewed sense of self.

Or perhaps it was the anxiety seeping out of me,  along with the steady flow of blue ink from my pen, that made the difference. Who needed a couch when I had my blank page? I found me on those pages, and though my writing did tend to lean toward the hopeful and sentimental, it did sometimes take a turn toward the naughty.

But nice.

DELECTABLE

 You look so sweet,
so smooth and slick. I
wrap my hand around your
stem. My fingers grasp and
gently tug that which is you to
bring you close and firmly wrap
my lips around your rounded rim
whose velvety feel brings forth
ambrosia the gods themselves
were not allowed. I take a sip
inhale deep the silken fluid
clear as the light that
gushes forth, ever
so sweet, blankets
my tongue. I
swallow
deep
and
lick
my
lips
so’s
not
to
lose
a
drop
of
savory dew, that which is you

 (© 2011 Irma A Navarro)

 

 

 

 

 

Crook of a Crooked Finger, Redux

I am humbled by my end-of-year WordPress report. Apparently this little blog gets around. Way more than I do. It makes me feel a little guilty for leaving it on autopilot sometimes.

And it seems that for some reason many readers like this post a lot.

I myself like the photograph I attached to it.

March 12, 2012

 

I’m not sure why I do. Maybe because it’s proof I beat RA back, and my finger recovered. Maybe it’s because that’s what this blog, and part of my life, is about. Beating Rheumatoid Arthritis. Over and over again.

I say “part of my life” because I refuse to let RA encompass all of my life, my every waking moment. Sure it forces itself to center stage time and again, but I work to bring that curtain down ASAP. This particular show is not entitled to go on with impunity.

And I say “beating” because it’s an ongoing, never-ending conscious battle. I don’t mean to say that it rears its ugly head every single day, that it forces limitations on me every day. It did once, but I beat it back.

I am very lucky in that way. Very, very lucky, in many, many ways. And as long as my heart is beating, I will write about beating RA.

This doesn’t really qualify as a “new” resolution for this coming year. And I won’t bore you with any resolutions I might have made. I know there is only one that I will adhere to and that is: write, write, write.

Thank you dear Readers. I wish everyone the best of health for this and all the years to come.

Feliz Año Nuevo!

 

A Pair of Wings

So I donned a pair of wings
once more
Before,
it was to say hello
This time,
it was to say goodbye

~~~

This past year or so I’ve seen the inside of more airplanes than I probably have in the past 20 years.  August’s trip to Los Angeles was to attend my father-in-law’s 84th birthday. We all knew, including him, that it would probably be his last.

He’d come close the previous June, so close we rushed to his side, fearful that we might not make it in time.  He was so sick then, I doubted he would see his 83rd. But he rallied after chemo was stopped and he was placed in hospice. This gave him not just an extra year, but a quality extra year.

A very good year capped off by the gift of one more birthday. His eldest daughter arranged to hold the celebration in a Mexican restaurant on Pacific Coast Highway. Ortega 120, where you can find “heart felt Mexican cooking.” Its rustic decor made you feel at ease immediately upon entering. And its theme of Dia de los Muertos seemed to coalesce with the religious artworks displayed. Death and hope rolled into one.

My husband led me around the restaurant where we were awed by the hundreds of artworks displayed, murals and ceiling paintings, the Mexican culture that we could both only imagine. I wanted to buy everything, but the pieces I truly wanted were not for sale.

It was a wonderful gathering, the reserved patio filled to capacity with extended family that I hadn’t even heard of. All there to wish Don Alfredo one more happy birthday.

The day before the funeral, my husband’s two sisters were debating where best to take us to lunch. While driving around in search of a place, they remembered Ortega 120. When we arrived, we were shown to the exact same table where we had sat the month before, with my husband ending up in the seat his father had occupied then. We were all struck dumb for a moment as the realization hit us. We’d been taken there, by Al.

The service was held in a wondrous chapel at the top of a sloping hill. From this height, the breathtaking expanse of Al’s beloved downtown Los Angeles lay below us.

My feeble attempt to capture Skyrose Chapel as my husband is walking out alone.

My feeble attempt to capture Skyrose Chapel as my husband is walking out alone.

Again, the venue was filled to capacity, as was the reception later. I was presented to and approached by numerous family members who became a flurry of names to me. We lost track of how many young people came up to tell us how Al had made a positive impact on their lives. Many went up to the microphone to recite stories about him.

There were many peals of laughter as story after story was told. Though few were able to get through their stories without stopping to wipe away tears. The one story that I think sums up my father-in-law and his self-deprecating humor is the one his good  friend recounted. He’d gone to visit Al on a day when he seemed pensive and this is what he said:

“I’ve been supposed to die for several years and yet here I am. So I asked God, why am I still here?”

“And what did God tell you?” his friend asked.

“He said, Al, you just have to wait. There’s too many Mexicans in heaven.”

~~~

Enjoying the sunset in Redondo Beach, California

Enjoying the sunset in Redondo Beach, California

sunsetsunset

My youngest who is traveling in Costa Rica made this token for her grandfather. She used "half of a rotting coconut to symbolize death, a rock washed up on the beach to represent the earth, a piece of palm to represent our family and home, and a flower for life." And then she sent it out sea.

My youngest, who was traveling in Costa Rica, made this token for her grandfather. She used “half of a rotting coconut to symbolize death, a rock washed up on the beach to represent the earth, a piece of palm to represent our family and home, and a flower for life.” And then she sent it out to sea.

Staff Sgt. Alfredo Navarro has answered his final call to duty.

Staff Sgt. Alfredo Navarro has answered his final call to duty.

In Her Own Words

Today’s Daily Prompt: Happy Happy Joy Joy

The subject matter hits me straight in the heart. My youngest, world-weary traveler, was home for the holidays. I hated letting her go back to the frigid north, but alas, what’s a mother to do but pray. And come close to a nervous breakdown!

I wanted to write it all out and relieve myself of the increased cortisol production my stress induced, but my little writer says it best in her own words:

After 33 hours of travel, which includes three delayed flights, two airplanes, two layovers (if you count 15 hours in Boston), the longest lines I’ve ever queued in, a number of subway trains, AND one bus ride later, I’m finally settled in my Brooklyn apartment.

And she still has to go pick up her suitcase, which made the trip without her. She is in the young, invulnerable stage of life. I must do the worry duty for her. I do try to remind myself that at her age I thought nothing of blizzards and zero degree weather and try to ease back on the worry throttle a bit.

But, those hours were no fun for either of us. They lasted forever, and I was eternally grateful for the umbilical cord I still have, her cell phone.

I’m extremely happy that she is back safely after that arduous trip, but I stressed that more bad weather is coming and she must take care.

I pray that everyone in those freezing temperatures stays safe. And warm.

I’ve Been Thinking

Thinking about yesterday. And all that I’ve lived. Lived through. Lived with.

Thinking about today. My family, my granddaughters. I see myself in them.

Thinking about tomorrow. My birthday comes at the end of the year and it always makes me reflect not only on the year ending but the year ahead.

Thinking about celebrating ten years of beating Rheumatoid Arthritis. October will mark the official date of the first salvo fired in its direction. My arsenal has changed somewhat over the years, been modified, added to, deleted from. But one mainstay remains: Methotrexate.

I don’t remember the exact date; it’s in my chart. My doctor doesn’t know it yet, but I plan to get access to it. I figure I will put the three hours I spend waiting in his office to good use. Or, I might pay for them to print it out for me. Whatever method, I need some of that data. I plan to compile some of my posts on this site, as well as added material, into a book: Beating Rheumatoid Arthritis.

I will come up with a subtitle in due time. And perhaps I will write a sequel in 2024 to mark 20 years of engagement. Or if things turn out to be more eventful than expected, perhaps in 2019, after 15 years. For I know I am experiencing an unceasing battle, or perhaps more of a Mexican standoff at times, but not a victory. Yet.

I’ve been thinking about my readers and followers. I appreciate you all greatly. I send good thoughts your way and I wish for you the very best of wellness in this coming year, and all the years to come.

 

Peals

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

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.

Paperless Woes

Has your doctor gone paperless?

You know, no actual paper lab order form that tells you exactly what tests will be performed. The paper that clues you in as to whether you should not eat beforehand so your results won’t be skewed. Or lets you know to drink a lot before getting there so you can deliver that urine sample. Last time I had to go back to the lab the next day; I was, ahem, not prepared to deliver.

I’ve gotten used to him not having to plop down a thick, heavy paper chart on the desk in front of me. Instead he reviews my notes and history on a sleek new laptop. I just hope that it’s backed up somewhere. The Cloud? Carbonite? A master hard drive? I really don’t care who finds out about my medical history. I care more that it not get lost into the ether.

In a way, this blog helps me keep track of where I am on the RA continuum. It’s a record, granted a digital record. But after this last visit, I decided I am going to do something more; I’m going to keep a written log: Star Date, blah, blah, blah . . .

And I am going to do one more thing, be more proactive with my plan of care.  I started to on this last visit. When the check-out clerk tried to do the “this is your appointment card and this number on it is your lab order” routine. I said, no, I need the actual order form. I don’t like this computer code number thingy and neither does the lab. So I got my piece of paper.

But (big but), I didn’t insist on at least verifying with him what, if anything, he was going to order for me at the pharmacy with his one click of a button. I understood he was and I waited for the text from the pharmacy telling me it was ready. Nada, zilch.

I called them this morning; they’d received no clicks in my direction. I called the office. They verified my old prescriptions. But, but, but, I said. There was to be something else. For my bursitis of the foot. After he made me jump a foot off the exam table by pressing into the most painful area of my heel, I understood he was going to order a prescription-strength anti-inflammatory. True I couldn’t think straight or hear right after that, but I swear he said he would.

Well he did mean to and they are now, and I once again await the pharmacy text. I appreciate the digital era I live in, but I’m a writer. I have a love affair with paper. It’s hard to let go.

 

What Is Going On?

I have a foot. Actually, I have two, but one is acting up. Acting up so very, very badly.

It started a few months back, perhaps several weeks ago. I’ve lost track. I thought nothing of it at first, but then the pain began to visit me more and more often. Often enough for me to stop in my tracks and pay attention.

I remember telling the PA, “My heels hurt.” He stopped tapping on his laptop long enough to glance in my direction.  I could read his expression, Meh.

“I know with age you start to lose the padding on the soles of your feet,” I hurried up and said to fill the silence.

He nodded and kept on tapping. My life story, or at least my RA life story, used to be a file inches thick. Now I don’t know. It’s held within a slim, flat black box with cold, hard keys. It makes the operator of it a little cold and hard, I think. Not because that’s how he is, but because he has to pay attention to where his fingers land; before he could write with his pen while still looking at me like he was interested in what I was saying.

It’s a dichotomy. I try not to interrupt his tapping, yet if I don’t speak he has nothing to tap about. Anyway, I just wanted it for the record. My heels hurt, but not that day. Though I was a little stiff from sitting in the hard waiting room chair for two hours, I didn’t have much to complain about that day.

On the next visit, I told the doctor, “My heels hurt sometimes. “ Just in case he hadn’t read the previous notes. He glanced up from his iPhone and smiled at me, then his eyes went right back to the screen.  He is on the cutting edge, treatment-wise, always researching each new step from every angle.  So I said nothing further. I trusted he would store that little nugget regarding my feet and pull out the magic formula when the time came.

On this visit we were more concerned with having to add Plaquenil to my cocktail, so my feet were low priority. “I want to see you in six weeks,” he said, making himself a note. “When are you back? How long will you be gone?”

I love a man who listens.

“I’ll be back by then,” I said. I’d told him I was traveling to see my baby granddaughter.

By the time we left, I had an angry right foot. It could be somewhat mollified with Advil, Tylenol or Aleve. They took turns stifling the fire. The pain made itself most at home in my right heel. I’ll rest it; it’ll be fine, I thought. Hah!

It was busy, busy, lots to do. Strolling down Bourbon Street was fun while it was happening.

“Oh, my God,” my daughter exclaimed. “That bar was in Bar Rescue.” She had all the backstory portrayed on the TV show about the rivalry between it and another bar up the road. I stopped and looked at it; it didn’t look like much from across the street.

And that was exactly the trouble. It was across the street.

“Go inside and look around,” I said. “I’ll wait here with the kids.” She is a bar aficionado. Wants to own one day. (!)

She stared at it for a bit, then shrugged and kept on walking. I was relieved. As long as I kept moving, I could quell the fire. My synapses were busy concentrating on other parts of my body, but when I stopped, oh my! Even the sugar high from the beignets was not enough to distract my brain from the pain while sitting.

I blamed the extra activity for the acuteness of the pain, but once I returned home and had all the leisure I could desire I had to find another culprit.

Maybe I fractured something?

Could it be RA being its mean old self?

Yesterday, I couldn’t bear weight on my heel.  Walking on the ball of my foot hurt exponentially worse. It was so bad, I saw stars while I limped from room to room. And I thought twice before moving. Did I really have to go pee? Right then? Could it wait a bit?

I went to bed with one thought: see my PCP, get an Rx for an x-ray, and then hobble over to the diagnostic center.

Today it barely hurts and I managed to walk the grocery store without a problem. I’m stumped. As Wolf Blitzer would say: What is going on?