Tag Archives: Health

My Mother’s Kitchen

I am always looking for my mother’s kitchen. The scents, the sounds. The tastes, the textures.  The colors, the flavors. The love she used to stretch each meal so that we were all left satiated once again. Each meal a true labor of love, whether it was a simple dish of eggs scrambled with tortilla bits, called Migas. Or a grand presentation of Mole Poblano, chicken in a spicy chocolate-based sauce.

I doubt I will ever find even a semblance of it, not even in my kitchen as my own table pales by comparison. She is cooking in heaven now and I am left with memories that propel me to keep looking so that every time I walk into a Mexican restaurant I wonder, is this it?

Chips and salsa

An occasional treat. If I eat too much corn, I notice swollen hands the next morning. RA imposing its limitations. The salsa has several health benefits, but what is salsa without chips?

wine

White Zinfandel. Something not found anywhere in my mother’s kitchen. Or my own actually. I keep Moscato around, and I found a strawberry Moscato that hits the right spot after dinner. Who needs dessert?

avocados

Guacamole. Avocados were a mainstay of my diet growing up and are a frequent part of my diet now. Avocados are loaded with vitamins and minerals, plus they are delicious plain or mixed to make guacamole.

Beef Tacos

Beef tacos. Another thing I don’t indulge in often, red meat, especially when it comes in a corn tortilla embrace. Another staple from my childhood was rice and beans, though  I gave up white rice a long time ago. The beans (B vitamins and Folic Acid) remain an important part of my diet, minus the sour cream and cheese topping. 

Pinata lanterns

We were enchanted with the star-shaped hanging lanterns. When we asked our server where we could buy some he said, “Guadalajara.” Hmm, that’s a ways away; maybe I’ll check online. 

Though this was a lovely place, the food delicious, and we received excellent service, it was not quite my mother’s kitchen. I know it no longer exists, but I can’t help wanting to find it.

***One of my favorite novels: Like Water for Chocolate, (Como Agua Para Chocolate) a luscious love story with a bonus of delectable recipes preceding each chapter, written by Laura Esquivel and translated into English by Carol Christensen and Thomas Christensen

 

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An Apple a Day

I mentioned before that I’ve been studying foods for a few years now. When I decided I would write some food-related posts on this blog, in my own roundabout convoluted way of course, I surprised myself with just how much information I had gleaned.

I was also surprised to find composition books filled with neat penciled, cursive writing. Such patience. Such yearning. Such neatness. Such legibility. Such heartache. Running my fingertips lightly over the words as I read, I felt the me of so long ago. The me who had written them, as if the careful writing down of this vital information would somehow help my pain go away.

Fear not. I do not plan to impart solely the clinical. More so the personal, and share what I believe has helped me. The main objective for this study of foods was/is to combat inflammation. That to me is far more important than thwarting fat. Because having a few extra pounds of fat on board is not as lethal as having a few extra ounces of liquid on board.

I learned that the hard way a few weeks before being formally, officially, definitively diagnosed with Rheumatoid Arthritis. Prior to that event, I ended up in the ER with fluid squeezing my heart and lungs to the point that I presented as an MI patient.

I’d known there was something wrong with me for a while. Something that rest and sleep (hard to come by with a job and kids) and regular doses of OTC pain killers couldn’t seem to touch. My primary care physician mentioned the possibility of RA and handed me over to a rheumatologist.

Unfortunately, this rheumatologist turned out to be the wishy-washy kind. “It could be this. It could be that.” I don’t remember him laying a finger on me, not to examine me nor even to offer a bit of sympathy. And not surprisingly, he never came up with a diagnosis.

But he did treat. Vioxx, right before that blew up. Advil, yeah, like I hadn’t thought of that already. Paraffin wax baths for my hurting hands, hah! I’d read about those in my Fundamentals of Nursing textbook in 1978. This was 2004!

I thought we’d come a long way, baby, but apparently he hadn’t. In August of that year, I went to my PCP and spoke my mind. “That man is going to kill me.”

Little did I know.

He referred me to another rheumatologist and I was given an appointment for mid-October, new patient and all. I tried to think positive. Help was coming. I could see the light at the end of the tunnel.

On Oct 3rd, what I saw were the bright overhead lights of the ER exam room where at least ten people floated around me, sticking needles into my veins, needles into my radial artery, pills under my tongue, O2 onto my face, leads onto my whole body for a 12 lead EKG.

And the funny thing was that I didn’t care! I didn’t care what all they were doing to me because when you can’t breathe you don’t give a crap about anything else.

After 24 hours of very expensive testing, it was determined that my heart and lungs were fine. As the ER physician put it as he sat next to my hospital bed, “It’s your inflammatory condition.”

It was not his place to diagnose a specific ailment and then come up with a long-term treatment plan for me, to do the job of the specialist who should have. It was his job to pinpoint the obstacle to my heart and lungs functioning as they should right then. I returned his wry smile with my own. We both knew why I was there, why my status had deteriorated to the point where he and I ever had to meet at all.

I immediately envisioned chest tubes being inserted into me to drain the fluid. I’d lost track of how many times I’d assisted a doctor with their placement in critically ill patients. Had I been thinking clearly I would’ve realized that had I needed that particular intervention, I would already have a Pleurevac hanging off the side of my bed.

Though I lay amidst wires, lines and tubings, which made for one very restless night, it was only IV lines, heart monitor leads and an oxygen sensor clipped to my index finger that held me captive to the bed. That, and my yet-to-be-diagnosed disease.

I was sent home on oral steroids to treat my pleural and pericardial effusions. That’s when I first met up with my buddy, Prednisone. We’ve had a rocky on and off relationship these past ten years. Mostly off, but I like to keep my buddy handy, or as I tend to think of him, my frenemy.

Our first dalliance lasted till the following February. By the time I got to see my new rheumatologist, I’d gone through the one week’s worth of treatment prescribed by the ER Doc. The first thing he did was to put me right back on the steroids. “We don’t want it happening again,” he said. No, we sure didn’t.

The next five years were a blur of pain, but at least I knew why.

Come 2009, something happened. I’d left my job several years before and my youngest child had flown away to college.  I began to feel better physically. The fog was lifting and I began to look around. And I thought wait a freaking minute. There’s gotta be more to this than pain and drugs. And so began my journey, into exercise, into foods, into love. Into me.

“What’s Your Donkey?”

A few months ago, I attended a business conference and one of the presenters, a videographer, told a story about filming in a small village whose name I can’t pronounce nor remember. She asked the women what would make life easier for them in that remote village and they said, “A donkey.”

At first she was surprised at such a simple request, but they explained how a donkey would help them till the soil and then carry their produce to market. There were other reasons as to why a donkey would make such a difference in their day-to-day existence so they organized a means to get the village women their donkey.

That talk, in reference to setting up a business and figuring out our needs, made quite an impression on me and it got me to thinking. What’s my donkey?

In my stand-off with RA, there are several inflammation markers I keep track of. As far as I remember, my sed rate has been normal or close to normal. (I am now the proud owner of my medical history for the last nine years. I asked and I received a CD of my chart. I will peruse later.)

The other marker, the one that more closely reflects how I feel physically, is my CRP. That has spiked more often than not over the years. Last fall I was feeling a little crappy and sure enough my CRP was 16. At last month’s visit it was nine. When it’s close to normal (4.9 or less) I feel terrific. Nine is good, awful good.

When my CRP is normal or near normal, I feel 20 years younger and just as spry. A while back we had to replace the water filter on our fridge and without even thinking, I went into a full squat, my tush almost raking the floor by my feet. My husband stood by my side, confident that I could not dislodge the filter from the bottom of the fridge without his muscles.

This is a man who road and mountain bikes, surfs (when there’s a swell, he once got kicked out of a surf spot because he was catching all the good waves. He’s used to Pacific Ocean swells; the Atlantic doesn’t quite cut it) and is younger than me. Since he was annoying me, I ignored him until he cried out, “I can’t do that! Squat like you’re doing now.”

I pressed on the end of the filter and it popped into my hand. I stood up, coolly handed it to him, then left him there, transfixed, with his mouth hanging open. This is also a man who had seen me at my worst, when I thought the fight with RA was lost or would be.

But, I said no, not yet.

And so, that is my RA donkey: a low, or normal, CRP.

And the continued flexibility to do full squats whenever I darn well feel like it.

 

 

Ride

What does it mean when I don’t even feel hot until the 28th minute of my 30-minute workout?

Does it mean I should pedal faster, or pedal longer to get the cardio I need, and to lose the dreaded extra pounds? My short-lived goal of ten miles in 30 minutes has been, oh, so met.

I had decided that for the sake of consistency, I would limit the time on my stationary bike to 30 minutes and do it at least three days a week. Once I’m on the bike I revel in it, but it’s the getting on it that sometimes gets lost in the course of the day. There are so many other things to do! So I told myself: It’s only 30 minutes!

But the deal was that I couldn’t just meander through my bike ride enjoying the blue skies and puffy white clouds seen through my patio’s screen enclosure. I had to make it count. I had to make it comparable to my Tai Chi exercise, if not in length, then in sweat equity.

Tai Chi class is an hour and a half long; granted we do break for tea and cookies, and live chatting. And we spend almost half of the rest of the time watching the instructor go through the moves, which we then try to copy. She is poetry in motion; we are discordant verses.

Tai Chi is a real workout even though it’s slo-mo martial arts. By the end of class I’m usually sweating and my legs are crying out for a chair. Any chair. I used to get the same workout reward from my bike. The endorphins would fly as the sweat would pour. It was awesome.

But apparently, the three-minute mile is not good enough to even get a bead unless I do a whole lot more of them. Lately, I’d been having fun just increasing my speed, beating my personal best, 18, 19, 20, 21, 22, 23 miles per hour. Whooeee! That was fun; now it’s time to get to work.

I’m feeling good and as usually happens, when I feel good I tend to work out more, or should I say, harder. Which then makes me feel even better, a win/win. For I see exercise as money in the bank. If I put in a little bit each day, or almost every day, I will accumulate a mighty reservoir of health to dip into now and then as I ride this roller coaster called RA.

The I’s Have It

I chose a very ambitious path for myself this year and I have been mulling over my decisions while keeping my finger on the pause button. I haven’t exactly been idle, mind you. My brain has been working at a furious pace, while my body’s given the impression of languid ease. 

There are so many things to consider as you set forth on a new journey. Even if it’s a journey you imagined taking for years and years. You must visualize the twists and turns of the road up ahead. The inevitable forks in the road, forks not yet taken. Be ready to confront all, or almost all, the obstacles that will plop down in front of you like newly fallen trees. Find a way to sail over them. Wings, you must sprout wings.

Wings of knowledge. Wings of courage. Wings of faith.

I’ve been thinking about all this the past three weeks as I allowed myself to be consumed by a work of science fiction. While I let the story overwhelm my consciousness, my subconscious was left free to think, and to plan.

I was doing all my reading on my devices, laptop, tablet and even my phone. Wherever I was, wherever I went, I had my story with for me. But this method of reading provides one benefit that reading hard copy doesn’t: it allows you to increase the font to your liking, to increase reading ease.

And it reminded me that I needed to deal with one foggy issue. My eyes, or rather my eyesight. At my last check-up I was given a clean bill of health. Mechanically speaking. Everything was working fine, or should have been if not for one chemical variable, Gabapentin.

It was prescribed for me to treat nerve pain when I was diagnosed with shingles back in April. (Can it be almost a year? Where does the time go?) I was to take it three times a day and I did. Initially.

I was copyediting a manuscript at the time and racing to completion when all this occurred. It was through sheer grit that I managed to complete the project on time, although the author was quite supportive and understanding.

As time went on, I noticed things were starting to get really blurry. Until one day (duh), I decided to check the prescription flyer for the side effects. And there it was, in the tiniest print possible: may cause blurry vision.

Aha!

I cut my dosage down to once a day, and since it also said it caused drowsiness I took the dose at bedtime. Things seemed to clear up after a while, but not as clear as I would prefer. I blamed eyestrain, too much reading, too much computer time.

But here I was facing even more computer time, even more writing, rewriting, revising, editing and proofreading on hard copy. So while I read the sci/fi saga, my brain said: Stop.

And I did. I stopped my nightly dose and have solely continued the B vitamins also prescribed for the nerve pain. Nerve pain that by now occurs only rarely, knock on wood. Shingles leaves you in fear of its recurrence. But I say fear begone, because now on a clear day, I can practically see forever!

***

What have I been reading?

 

****

Ooops report: I was scrolling through and mistakenly hit the “like” button. I didn’t know you could “like” your own posts. Now I don’t know how to cancel it. Anybody know?

A Little Bit

Today is my sister’s anniversary. 51 years of married life. I can hardly comprehend that. That’s almost as long as I’ve lived on this earth.

We don’t keep in touch. She lives far away. All my sisters live far away. We don’t keep in touch, ever.

Sometimes that feels strange to me, and at other times, I don’t think about it at all. It just is.

But this wasn’t what I planned to write about. 

I planned to write about guilt. One type of guilt, for there is always a variety of it to go around.

As I go through my entries on this blog, and  compile those I might possibly use, all sorts of memories are being triggered. Some memories have nothing to do with RA, while others send me headlong into the world of constant pain that I lived in for what I assumed would be forever.

There’s no denying that RA changed me. It changed my outlook on life. It changed my ability to function, productively as well as effectively. It changed my career and career focus. It changed the trajectory of my future.

But looking back from ten-plus years, for I really do not know when this dis-ease arrived, I cannot say it is a bad thing. Not entirely.

I have benefited from the care of a wonderful doctor, who puts up with my self-treatment and self-diagnosis. Perhaps my intimate involvement with my treatment process has meant the difference. For though I no longer practice in the field, I cannot stop being a nurse. I cannot stop wanting to bring wellness to those whose lives I touch.

I have seen the depths and I have seen the light, to use one worn out cliché. And because of that, I feel guilt.

Guilt that while others suffer excruciatingly from this ailment on a daily basis, I am forced to agree with my doctor’s mantra. “You are doing very well,” he says to me after every visit.

And I am. I feel better and more mobile than before RA checked in.

I’m not really sure what I have done to make this happen. From the research of my writings, both posted here and those still tucked away in my journals,  I suppose I will find out, glean some sort of insight. Is it diet? Is it exercise? Is it love? Is it companionship? Is it finding like-minded friends to talk to? Is it knowing that people out there care about me? Is it caring for others? Is it all of the above?

I know that the treatment for RA is not a one-size-fits-all. But perhaps my story might help. Just a little bit.

 

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?