Category Archives: Hope

You Never Know

You never know when you leave home what things are going to transpire without you. You imagine life will go on as it always has. You imagine you will be missed, but that time will pass and then things will return to the before.

I knew that leaving home for two months would shake things up a bit. But things are different now; there is less to shake up. It’s only my husband and me at home. And he’d gone away and left me behind countless times. Times at sea, business trips, times at sea and now back to business trips.

I said to him, now I’m not going to be left behind. Now I go with you. “Yes,” he said. There are no small children at home anymore. I have only two cats that my neighbors are happy to feed. There is no job to request time off from. I’m a freelancer now. I work when I want. My work is portable to boot. Have WiFi, will travel.

He’s had to make one day trip so far, a meet and greet with the other Directors. “If you were with me, I’d make a weekend out of it and stay in nearby St. Augustine,” he said. I regretted that couldn’t be so. I do so want to see that city. But knowing there will be future trips to headquarters was consolation.

I thought that would be the worst thing that could happen during my time away from home. That he might have to take trips I couldn’t partake in. Sadly that proved to not be so.

While I was away, he decided to move his mother from California and place her in an assisted living facility close to our home. She’d been suffering from dementia and worsening rapidly. He found her a highly rated, top-notch place. The best that money could buy. “It’s so nice, I want to live there,” he said.

During my short trip home, I had a long talk with his sister. Explaining to her what was happening to her mother and promising that I would look after her. When I get back, I will fix up her room, I said. I’ll hang some family pictures and brighten up her room with flowers and mementos. Things to keep her grounded to today.

My husband planned to take her out for the day once she’d settled into her new routine. Shopping, dining, walks in the park. He was upbeat. She liked it there, she’d made quick friends. The reports on her were positive. She was always an ebullient personality. She’d made her living in sales. A people person.

Five days into her stay, she was transferred by ambulance to the hospital. Pneumonia it turned out to be. She’d smoked for nearly sixty years. Her lungs were weak, but she soon recovered and was scheduled to be discharged within the week. Before that could happen, she had a massive stroke. There was a high likelihood of another stroke, the neurologist said. And there would be no recovery from that.

She left us on Sunday, June 15th. Father’s Day. We all think she just wanted to see her son once more. That somehow she knew what was happening to her mind and didn’t want to live that way.

I can not wish that her life had been extended artificially. I would not want that for myself. I’ve seen too much of that kind of suffering during my Nursing days. My husband did not want that for his mother either.

I know that the room, at the appropriately named The Palace, is empty of her spirit now, but I still feel the need to go fix it up for her. I will do so in my dreams during the moments I can sleep. And in my prayers during the time that I’m awake.

I have had to hit the Prednisone bottle more often than not these past few days. My body and my spirit are torn and aching wanting, and needing, to be in two different places at once. There is no Tylenol for the soul.

And while I try to adjust to this momentous change in all our lives, I am informed that our cat, Tigress, is no longer. A sudden illness took her. It will be strange to go home and not see her welcoming shiny, green eyes staring up at me as they did for nineteen years.

Tigress 1995 - 2014

Tigress, born in my home June 19, 1995.

 

 

 

 

 

 

 

 

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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?

 

 

 

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.