A Change is as Good as a Rest.

This past Saturday morning I wanted nothing more than to snuggle deeper into the covers and stay there. After a month of early rising and little sleep, I wanted to remain in my cocoon and hide from the world.

The very idea of rising to shower, dress and leave the house when there were no appointments to go to seemed like a punishment I didn’t deserve. But my daughter-in-law had put me on notice.

While we were all consumed with being at the hospital, she quietly took over the care and feeding of the troops, including the out-of-towners. And she paid special care and attention to my granddaughter.  We didn’t know what to tell her, she being only six. My first impulse was to protect her and tell her nothing. But how to explain the sudden disappearance of her beloved Pa?

My daughter-in-law handled it all, quietly and efficiently. So quietly and efficiently, I began to feel guilty. My son was a constant at my side, and took turns with me spending nights at the hospital, while his wife was left alone to carry the ball for the whole family.

I made a mental note to do something for her, someday, when I was not so tired, but she got ahead of me. She was taking me out to lunch and a massage she said. And though I reluctantly got out of bed and left the house that morning, leaving my son at home with his dad, I felt a little lighter by the time we made it to the corner a block away.

It turned out to be the right medicine for me. To move away, just far enough, just long enough to breathe free air.

We enjoyed a leisurely lunch of specialty pizza with a lot of much-needed sangria. And afterwards we walked down blistering hot streets to the massage place. Even the boiling sun felt good.

The massage hurt, though I’d asked for light to medium pressure to be applied. Too many tense and knotted muscles in my back. Later when we compared notes, I found out that her massage had hurt too, for the same reason.

Nonetheless, it was a good experience. The dim lighting, the gentle, soothing voice of the masseuse and her otherwise healing touch, the sense of letting go and just allowing myself to be was something I hadn’t realized how much I needed until that moment.

Now I have something else to be grateful to her for. And I still need to come up with something to do for her.

Us, a few Mother's Days ago.

Us, a few Mother’s Days ago.

 

 

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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.

 

 

The Long, Long Road

I thought I would have caved in by now, fallen in like a deflated souffle.

It’s been 25 days since our life radically changed in one split second, or perhaps it occurred over the course of many hours. Hard to tell, hard to know.

All I’m sure of is that the days we used to have are gone. Gone forever, or gone for a while, we don’t know.

His sister says to tell him, “Chin up.”

Oh, if it were only that simple. Simply a matter of will.

I worried about me. Once I stopped being consumed with worry about him, I remembered me. Twenty-four hours in, when I left the hospital for a shower and change, and a quick nap that never happened, I made the conscious decision to increase my prednisone.

I’d spent over a year weaning down, weaning off. And I did stop, for about a month, but then the old pains came knocking and I gave up. “I’m done,” I said to the nurse practitioner at my last rheumy visit. Done, done, done.

If a little prednisone is the difference between feeling good and feeling bad, then bring it on. I told her I was on one milligram, and would stay that way. She nodded, but I didn’t need anyone’s permission. My body, my life, my decision.

So that Sunday at home for the first time after his massive heart attack, after I knew that he’d made it through that first night, that first 24 hours, I told myself what to do to keep myself going.

I would increase my prednisone to five milligrams, five times what I was getting before. And I would stay on that dose indefinitely, for as long as it took, till my slow, self-plotted days resumed.

Right now my days are nonstop, nonstop, a whirlwind of medical appointments hither and tither. Nights that don’t include much sleep, or much rest. Nights that when I do sleep a little, I do so halfway, alert for any sound, any need.

And therefore, I find myself surprised that I’m feeling fine, physically. I am tired. I am exhausted at times, and I can’t think straight at other times, but that is normal. That is a normal reaction to such a crisis.     

As we proceed down this long and tortuous path toward recovery, I have to give thanks that at least one of us is feeling normal, and that so far I can still claim the fortitude to keep on traveling down that seemingly endless road.

This song keeps playing in my head, the mournful beat and the words:

You know I can’t let you slide through my hands

I watched you suffer, a dull, aching pain

Faith has been broken, tears must be cried

Let’s do some living, after we die

 

I Ain’t Got Time to Bleed

If you’ve ever seen the movie Predator, you are familiar with that line. Jesse Ventura is hit, bleeding, but he’s focused on taking out the alien predator so he’s got no time to bleed.

I feel the same way right about now. Only the blood I want to shed, but hold back, is not red, it’s clear. And comes from only one source, my eyes, and originates from only one site, my heart.

I don’t know when I’ll have time to do anything but move forward. When I will have time to stop, curl up in a ball and release all the pent-up emotions. I don’t know when that tomorrow will come, or what that tomorrow will bring.

Or perhaps, I do know. Perhaps I know too much. And therefore, my desire to “bleed.”

 

A Heart Too Broken

I want to thank you all for your kind thoughts and words. They are a crutch for me to lean on in this trying time. I hold foremost the enemy within and I am doing my best to not let it out of its cage. I realize I will be no good to anyone if I let a flare overwhelm me. I suppose we are never strongest than when it’s crucial that we be so.

It’s been two weeks now since my husband’s massive heart attack. It’s taken this long to determine what route to take in treating it. I was hoping for the possibility of a bypass where they would build new coronary vessels to do the work of the arteries that are no longer perfusing the heart.

Sadly, that is not an option. There is not enough viable tissue left for the doctor to form a bridge to. Yesterday, they placed an Automated Implantable Cardioverter-Defibrillator (AICD). 

This tiny device will monitor his heart and, when necessary, will deliver a shock to reinstate a normal rhythm. We do not know what his overall prognosis is. The major organs do not do well when they are deprived of oxygen for a prolonged period of time.

For the present, he will continue to receive dialysis, while we wait to see if kidney function returns to normal. His mentation is now improving. His initial confusion was also due to the kidneys not clearing out the sedation he was given while on full life support. With dialysis, he is coming around.

It’s a long road ahead, a long, long, arduous haul. There are no easy answers; we just have to wait and let time heal, if it can.

I urge everyone to run, not walk, to the ER if experiencing symptoms of a heart attack. Unfortunately, the first instinct is denial. Please don’t listen to that. Go!

 

How Can You Mend a Broken Heart?

I’ve been off the grid for a while. It had been due to mundane, everyday reasons.

But now it’s because of my husband, I don’t even know how to say it. To write it, for writing it makes it real.

He is in the hospital. And that’s the good thing, that he’s in the hospital.

The planets aligned just right so that when his heart gave out, it did right in front of the paramedics.

He’d gone on a bike ride. No big deal, just for one hour this time, not the normal three or four. Just to the park ten minutes away, not the 50-mile ride he always does.

The kids were coming over for an early dinner, by a fluke all three of them. Our youngest, on a whim, came down from NYC for the weekend.

“I’ll be back,” he said.

He didn’t come back for seven days. Seven days where he rode the waves of full life support.

It’s been nine days since he went for that last bike ride and the journey to recovery has barely begun. The journey that we all embarked on when I answered the phone without thinking. Normally, I won’t answer unless I know who’s calling, but this time something made me pick up, even though I was in the midst of cooking and cleaning.

The journey that continued down that long, cold, endless ER corridor, my eyes drilling holes into the floor in front of me as I followed the tech who escorted me, afraid that if I looked up I would suddenly be confronted with a team in crisis moving in that synchronous, familiar ballet of saving a life.

This time with my own husband at the center of it. Lying there, helpless, colorless, and I feared, lifeless.

Hours and agonizing hours later, they came to me. They’d been successful in stabilizing him, enough to be moved to an ICU bed, enough to say he was still alive.

And he remains there, slowly, slowly moving along the slippery bonds that bind us to this precious earth.

Redondo Beach, California

Last summer at his beloved Redondo Beach, California, where he grew up surfing the waves.

Guacamole Day

avocados, guacamole in a molcajeteGuacamole is made with the delicious avocado.

Which is derived from the Spanish word aguacate.

Which comes from the Nahuatl (Aztec) word ahuacatl.

Which was used to make ahuaca-molli, avocado sauce.

And from there, you finally get to dip into the guacamole.

Avocados were a staple in my house when I was growing up. There were always avocados on our table. Sometimes there was even guacamole.

My mother didn’t need to mash them up for my father to eat them. She would merely slice them up and serve them as a side dish with his enchiladas, or whatever else was on for dinner.

When she did make guacamole, she made her own salsa. Chopping and dicing, and then grinding the ingredients in her molcajete (Nahuatl mulcazitl), a stone mortar and pestle. I watched her closely to make sure she didn’t add too many piquin chiles, which she conveniently picked from the bush that grew right outside our kitchen door. Those colorful pea-sized peppers packed a great punch and transformed whatever food they were added to into a four-alarm fire in your mouth.

I steered clear, but it didn’t seem to bother my dad. I guess it’s an acquired taste that I never acquired. And though I acquired the knowledge to make my own salsa, I didn’t inherit the need to.

Avocado in molcajete. Aguacate en molcajete

Down to one as usual.

Store-bought mild salsa works fine if I choose to mash up the avocado in a ceramic bowl with a spoon. You see, my molcajete only serves to hold my aguacates. It’s not used to make guacamole or even to serve it as some Mexican restaurants do. It’s mainly an artifact, a period piece in my kitchen that I have a sentimental attachment to because it reminds me of my heritage.

When I can’t think of what to have for lunch, I end up grabbing an avocado. It’s rich, buttery taste is scrumptious in a rolled up, warm corn tortilla. Avocado enchilada or avocado taco? Who cares, it’s nutritious and delicioso.

Some recipes you might find worth trying. I think I will try the second one.

Enjoy your guac!

 

 

Mine Eyes Have Seen

Books

My latest finds.

I was browsing through a bookstore the other night. The very act of walking through the aisles and by tables full of books, while being free to linger my hand lovingly upon them, is almost erotic to me.

A bookstore is like a candy store full of beckoning treats, or a bakery full of savory scents luring you inside. Thrilling delights for the eyes. Everywhere.

Books have been my companions, my buddies, always there to fill my needs. I coveted and collected them, all types finding a happy home with me, until the usurper’s (RA) unwelcome arrival forced me to give up reading hardcovers.

Their unyielding weight hurt my hands and my wrists, and robbed me of my pleasure. How could I escape into my story if the pain formed a blockade around my brain?

A self-admitted book addict, I switched to strictly paperbacks to feed my passion. They were softer, more pliable and lighter, and they didn’t hurt my hands or wrists as much. But on some the print was a little too small, and my bedroom lighting suddenly seemed too weak. I found it a strain to read myself to sleep at night, as had been my ritual since forever.

The magic of Kindle came to try to save the day. I could enjoy my stories once again at any time of day or night, albeit with a tiny light attached. If I held it in a certain way, I could avoid having the glare bounce back from the screen directly into my eyes. But still, I missed the feel of a book. I longed for the aroma of its silky pages. And I missed having those actual pages to turn. I’d enjoyed flipping back to reread a passage, or forging ahead for a sneak preview of what was to come.

A backlit smart phone followed. I could read without any other lighting even though the screen had shrunk right before my eyes. My husband berated me for straining my eyes by reading on that tiny device. He solved the problem by surprising me with a tablet one Christmas, nine inches of backlit screen with adjustable fonts. Awesome.

A second, more powerful tablet followed that one. And then one New Year’s Eve morning, half the screen went partially dark. I wake up as I go to sleep, reading. At first, I tried blinking the blur away. I wondered if perhaps I was still asleep, dreaming that I couldn’t see all the words. But no, I really couldn’t.

I learned that I’d had a “stroke in the eye.” There was a blob of blood obstructing the vision in my right eye. The cure they said, or rather the treatment, was injections. Injections into the eye. Now I’m no coward when it comes to what life has thrown at me so far, but a needle in the eye? Come on, man!

Nevertheless, I psyched myself up for it, or rather, them (plural). I mean, how can I live without reading? In the past sixteen months, I’ve had four shots and, no, it doesn’t get easier the more you do it. You don’t get the hang of it and it doesn’t become second nature. It’s sort of like dealing with RA, whom I should probably blame for all this. After all, I blame everything else on it.

But let me tell you, thank goodness for modern medicine, and thank goodness for doctors who stay razor sharp. The blur is almost gone, so tiny as to be insignificant.

When this first happened, I went and got prescription readers. Till then I’d resorted to the cheapie drugstore kind. I had a pair in every room of the house. At that point, the optometrist could only do so much for my right eye.

Last month, I went for my checkup and got a new pair of glasses, a progressive intermediate and reader. Neither the OTC glasses nor the old readers were really helping with my computer work.

Well, night has turned into day. I can read real books again. Because not only has my vision improved, but so have my hands and wrists. And during this window of time, I’m grateful that I can indulge my passion again. That I can browse and touch and feel, and accumulate to my heart’s content.

 

Life Happens

Remember the saying life happens when you’re making other plans?

So true.

I have mentally blogged many times in the past month. So many little life episodes that I have subvocalized as if I had a tiny, invisible stenographer sitting on my shoulder. Alas, I do not, and as our nursing mantra goes: if it’s not written, it’s not done.

A lot has happened.

We had another anniversary, 35 if we go strictly by the calendar. That’s a freakishly long time. I remember seeing a documentary about George Harrison after his death. His wife of 23 years was asked how you make a long marriage. Her answer was striking and it has stayed with me. It’s simple, she said, you don’t get divorced.

So, so true. In 35 years you collect a lot of reasons to get divorced over.

But you also collect, or can collect, many reasons to stay together.

This year we celebrated by going to D. C. I’d always wanted to go, just to soak up the history. The place is so alive, you can inhale the adrenalin. It has a vitality that defies explanation or description. In short, we are going back.

We decided to drive, so that gave us four full days in enclosed proximity. If anything is going to drive you batty in regards to another person that will certainly do it. But the whole trip left us with nothing more than pleasant memories.

Except for one other thing. Within five days of our return my husband was complaining of UTI symptoms. I confess my initial reaction was: Been there, done that. But his being a man meant that his symptoms were far more complicated and unendurable than anything women might go through.

Of course.

We saw a kindly urologist. I’ve rarely run across a doctor so personable and I’ve run into many. Along with giving him some prescriptions, he suggested we buy a couple of books. One, he said, is called How Not to Die by Michael Greger.

I admit I laughed when he mentioned the title. Advice on how not to die seems kind of facetious. Snake oil, anyone? I mean, does anyone live forever? Does anyone want to?

Its subtitle, however, is: Discover the Foods Scientifically Proven to Prevent and Reverse Disease. And I am nothing if not a sucker for anything that has been scientifically proven. So we shall see what it’s all about when I delve into it, because I know he won’t. He’s symptom-free now so that means it’s all so yesterday.

The book will have to wait its turn, though. Right now I’m knee-deep into the Konmari Method of tidying. The Life-Changing Magic of Tidying Up by Marie Kondo. Her initial advice: “Start by discarding, all at once, intensely and completely.” And she advocates keeping only the things that “spark joy.”

Hmm . . . . That reminds me of the woman who said she got rid of 175 pounds all at once.

She got a divorce.

Cherry blossoms

Me among the cherry blossoms

 

Single-tasking

Without Prednisone for over a month now, my hands feel a little plumper. That sounds better than a little swollen, doesn’t it?

And a little stiffer. They look the same, but they don’t feel the same. And they don’t act the same. The Prednisone made them more limber, yet I still had some trouble with the digital multitasking of yore.

Today, my hands work better performing one gripping task at a time. Hold a pen, or hold the phone, or hold the notepad, or hold the remote, or hold a glass. If I try to manage several items at once, one invariably hits the floor.

My heart stops when it’s my phone that crashes on the tile. How can anything be so expensive? But in the grand scheme of things, it’s a small price to pay in exchange for pouring less medication into my system on a daily basis.

I wasn’t content to nix only one med, though. I told my rheumy I also wanted to wean down on the Methotrexate and he asked me a funny question.

“Can you afford it?”

I noticed the sudden perplexed look from the medical student shadowing him that day. One doesn’t consider paying for less medication as something one cannot afford. But I knew exactly where he was coming from and I didn’t hesitate.

“Yes,” I said.

“Because when I’m stable, I have to leave things unchanged,” he said.

He, unlike me, has to show up to work at his office every day. He cannot afford a flare.

But I can. My office is at the other end of the house. I don’t even have to get out of my jammies to show up at my desk.

I don’t want a flare, but I’m willing to take the chance. So I’ve been counting out nine tabs, instead of ten.

If worse comes to worse, I’ll go back to ten tabs a week. If a flare comes calling, I’ll chase it away with a Prednisone hit. After all, we’re not divorced, only separated.