Tag Archives: Hope

Osteo and RA and Age, Oh My!

So, my hands.

In the past few years, I’ve tended to buy the lightest cookware and dishware because the heavy ones hurt my hands. Last Christmas my daughter-in-law, bless her heart, gave me the most beautiful cast iron dutch oven cookpot, ruby red.

It looks lovely on my countertop.

Someone, don’t know who, left a clear plastic drinking glass in my kitchen. If you didn’t know better, you’d swear it was made out of sheer sparkling glass. I hefted it, it weighed nothing. I went out and bought some.

One day at one of my favorite shopping haunts (Target), I ran into a back-to-the-dorm sale of cheap dishes. I lifted the bowls. Again, nothing. I bought eight. My ceramic bowls are now backbenchers. Nice to serve in, but not to hold up and eat from.

So as time went on, I made allowances for my hands. After all, I’d say, you’re not getting any younger. RA is not gonna disappear. Osteoarthritis is gonna get you, each day a little more. Can’t let it get you down. Gotta go with the flow.

But now, weight doesn’t matter because nowadays I can’t touch anything. I have what the dermatologist calls “a problem with no solution.” My fingertips split (fissures) and bleed. For no reason that we can determine. I don’t think he even gave me a diagnosis. I meant to ask, but forgot. I guess he’d already named it.

It’s nothing new. This has been happening off and on for a long time. Twenty years ago, that dermatologist told me to stay away from soap and hot water. Right! I was working in an ICU and had young children. My hands were always being washed, gloved, scrubbed, and alcohol-rinsed.

Then I transferred to a desk job. Then my children grew up and left home. Then RA got worse before it got better, before I quit work. Or as I believe, it got better because I quit. And then my hands got lots better; the scourge mostly disappeared for years and years. If my skin broke down, it recovered within a few days. And then, wham!

About three months ago, my affliction returned. Perversely. Persistently. Stubbornly. Tenaciously.

It’s been three months now of pain and suffering. As I told my doctors, it’s almost disabling. And so depressing. Most days I can’t type. I can’t sew. At times, I can’t exert pressure on anything that I hold or the skin on my fingertips will either split or shred. (Sorry for the imagery.)

It’s like death by a thousand paper cuts. Feels like it too. We have so many sensory receptors in our fingertips. It’s what makes touch so thrilling, or so distasteful, depending.

I’ve tried everything in the book. Every cream. Every ointment. Every prayer. I even bought a box of exam gloves, just like the ones I used at work. Back then I considered them a culprit. Now I consider them a protective framework to hold my skin together.

I hit upon an answer by accident. One of my RA treatment modalities is to do a Prednisone hit whenever something physically taxing is on the calendar. I was going to have all my kids (4) and all my grandkids (4) in the house for a week. So I started Prednisone on day 1. And by day 7, my fingers, bless the ground they all step on, were practically healed.

I had a dermatology appointment and his eyes lit up when he saw my hands spread out like a stop sign before him. “Don’t get too excited,” I said. “It’s not your ointment. It’s Prednisone.”

He slumped back down on the stool. “But you can’t be on that forever,” he said.

Truth. And since I was on weaning doses, my fingers broke down just in time for my rheumatology appointment one week later, this past Wednesday.

He agreed. We will do a Prednisone treatment, not prophylactically this time. But again weaning down, though on a more gradual descent, till we get to zero. And healthy fingers. I hope.

“I leave it to you,” he said, in regards to the pace of weaning.

“It’ll be like titrating drips at work,” I said.

He smiled as he tapped away on his laptop. And I smiled as I padded out the door.

 

 

Advertisements

A New Year Wish

I’ve been lax with this site. Writing in my head, but not on my screen.

I want to say that I can’t believe this year has flown by, but I do believe it. It has.

I want to say that this coming year will be different, that I will not only finish the projects I start (and have started), but that I will begin projects that have existed, again, only in my head.

I want to say that time will tell if that comes true, but I can’t, for time does not control what I do or don’t do. Only I control that.

This has been a good year, all things considered. I did a bit of traveling and spent a week in Mexico City. Months later, I am still under the spell of having visited Frida Kahlo’s home. I find her inspirational, not only for what she suffered emotionally, but also physically. She rose above and turned her pain into art.

My family knows of my Frida addiction and I live surrounded by Frida gifts given to me over the years, from an apron with her image on it to a Barbie doll version of her. But the best part about finally getting to walk through what had been Frida’s home was being escorted by my younger daughter, the world-traveling writer who is living the life I could only dream of.

One thing that I’d never dreamed of doing was going on a cruise, but my younger son finally managed to convince me after several years of trying. We did the Caribbean route and it was amazing, the ship itself. A floating resort. What sticks with me about the ports of call is the color of the sea, an aqua blue that glitters like jewelry in the brilliant sunshine.

And the sunsets at sea. I have no words. But I do have a photo.

sunset at sea

An image of hope. It can only get better tomorrow.

Another thing I want to say is that I wish everyone a Happy New Year. May all you wish for, and all you dream of, come your way.

Future Planning

I read somewhere, some time ago, that RA can steal ten years of your life. I doubt that is still true, if it ever was, I mean how could anyone pinpoint the exact amount of time RA took from you? With new advances in treatment maybe there is no specific loss of days attributed solely to this disease process.

Luckily, I haven’t had to test the waters of the new meds out there. I’m still stuck on my weekly Methotrexate. Nine pills, no more, no less. I want less, but my doc is so very conservative with change. His philosophy is: don’t break what’s not broken, while mine is: let’s take it to the limit, none!

Ah, I can only wish.

But I am holding steady, and that’s nothing to sniff at. One must feel gratitude. And I do, but still, what I read about the ten years pops up in my head every so often. Like yesterday during our appointment with our financial planner.

He knows I want low risk in anything we do. If I was younger, I tell him, perhaps I would go for broke, but I’m not as young as he is. He smiles and then gives me options, perhaps a five-year annuity sounds better than a seven-year one? Yes, five sounds better than seven in this case.

What if in five years I’m sick and need the money and it’s stuck in a seven-year pit where if I take it out I forfeit some?

Then again, what if I’m sick in three years? Two years?

But what if I’m still sailing along on MTX seven years from now?

How can we know? And do we want to know?

I don’t think I do, so I will keep that ten-year thing at the back of my mind. It helps to motivate me to make the most of today. To make the best future plans. Because what if the countdown has started and liftoff is looming? 10 . . . 9 . . . 8 . . .

 

Life, etc.

So, I’ve been gone so long, I forgot how to get into the admin part of this site. I shall have to use their newfangled platform. New to me, that is.

You know what they say, life is what happens while you’re busy making other plans. Or as my mother used to say: Uno pone, Dios dispone. (one plans, God decides)

But as they also say, life goes on, RA and all. I don’t want to exclude my little parasite for fear that it might resent being ignored, like Glenn Close in the movie Fatal Attraction.  That was a great line, “I’m not going to be ignored,” she said. Why would Dan think that a force like her could ever be ignored.

RA is like that. It won’t be ignored, but we can try. Every day. Some days I’m more successful than others, and presently, it’s behaving itself. I have been doing manual labor for five weeks. I decided to go on a remodeling binge. My husbands pleads, “This it, right? We won’t do this again, will we?”

Funny thing, he has to do nothing, except put up with a little inconvenience, like sleeping in the other bedroom for a couple of weeks while they worked on our bathroom and closet. And maybe skirt around the furniture while they paint the walls. He’s at work all day. I’m the one home juggling the needs of several crews at once.

But I did bring this on myself. I never knew how many books I own, or how many framed pictures and artwork were on my walls. Seeing them all together was eye-opening. And I’m willing to lug my beloved books from room to room, no matter how heavy they are.

My only complaint is that if I sit too long in between spurts of activity, I have a hard time getting restarted. I feel like the tin man, rusty as hell, frozen in place. But as I told my rheumy who laughed at me (laughed with me?) it’s age, wear and tear, not specifically RA. Though I’m sure it’s in cahoots with the osteoarthritis, and we won’t specify the age. I’m years young, not years old.

It’s been a busy year. I was psyching myself up to live through another June 11th, the day my husband tried to check out last year. We are both still traumatized by those events. And while I was dreading the day arriving, my son had a car accident. He had an injured ankle, which turned out to be fractured. But the cause of the accident rocked my world. He’d had a heart attack, at the age of 35.

This was June 2nd. And at three o’clock on the morning of June 5th, while I was trying to sleep but couldn’t because they were going to do a cath that day to find out what heart damage there was, my older son called me.

You know that a 3 a.m. phone call is a bearer of bad news. I held my breath as I reached for my phone, thinking about his children, him, his wife. But they were all O.K. He had called to tell me his father had just died. From a heart attack.

He’d had three already, and had been told his only possible treatment was medications. I knew the day would come, but you are never ready. I’d spent part of my life with this man. And though we went our separate ways, we remained connected through our son.

I immediately wanted to split myself in two. Both my sons were in trouble and needed me. One, alas, far from me. I had to think. I know my older son has a wonderful support system in his wife and her family. I see how they love and respect him.

And my younger son was scared to death, his wife is pregnant and she has no real family close by. I had to stay put. But it was really, really hard living through the physical and psychological trauma of one son, while aching to be with the son who was feeling such emotional pain.

I will see him and his family in a couple of weeks. We are meeting up in Disney World. And then we see each other again for Christmas. I can’t wait.

My younger son is dealing with his new, hereditary health status and is still limping around. It will be a while before his ankle, tendons, and ligaments, recover to where he can get back to his karate training. He had scheduled to test for his 2nd degree black belt at the end of June.

Meanwhile we await the birth of his little girl in nine weeks or so. I can’t wait for that either and have broken out my sewing machine. More baby quilts to make.

Through all this, RA has maintained a presence, though not an overly aggressive one. I am completely off Prednisone and have had no other med changes. My labs are slightly off, but then so am I.

Hope all is well with you, dear reader.

 

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.