Escape From MS and Other Sundries

I apologize for my long absence, but I made it home, yay! My return came in a roundabout way as my SO (significant other) booked a July 4th weekend stay in merry Coconut Grove.

Coconut Grove

View from our 19th floor balcony.

The eighth floor pool area gave us uninterrupted access to the sight of hours of brilliant fireworks, an awesome production that went on and on and on to the delight of my four-year-old granddaughter. It was a great re-bonding experience with my family and proved to be a nice buffer between there and here. Here being the place where you easily trip and fall into a rut.

I’d never been gone from home for two whole months before and it proved difficult for everyone. Even though it saddened me to think that I wouldn’t see my precious Carmen every day anymore, I longed for home. I dreamed of home.

My Lovely. I shall see her again on Thanksgiving.

My Lovely. I shall see her again on Thanksgiving.

And while my plane landed on a Thursday, I didn’t truly make it home till Monday. I walked in the door with resolve, and with what I call a late onset attack of spring cleaning. It’s an incredible catharsis to throw away stuff that’s been sitting in your house taking up space for a quarter century.

Rut begone. This is a new era. A new era of organization and production. I’m back to my writing and freelance editing. My finger is off the pause button.

***I had my rheumy check-up a few days ago. All labs normal. The usual, “You are doing very well.” There was only one fly in the ointment. Apparently, my CRP is 0.76. Meaning less than one??? I wanted to celebrate and then Doc said, “Creatinine is 0.76.”

Now you know that’s too great of a coincidence. Since we changed insurance companies, these results came from a different lab and I highly doubt they are identical numbers.  There’s no way I went from a CRP of 13 to less than one. I shall have to wait until the next round of labwork to confirm, but Doc is right, I am doing very well. Seems my trip to Mississippi was more of a plus than a minus overall.

***Just read that Levi’s CEO advises not to wash your jeans too often as a way of helping the environment. To spot clean them, and he says when he does wash them, he hand washes them. When I read that all I could think of was my hands, how much that would hurt my hands. I may be doing well but some things are beyond me forever thanks to OA and RA. Wringing out thick denim is one of them.

But I will heed his advice and wash my jeans less often, as well as continue to do my bit for the environment in other ways. Our children and grandchildren deserve a clean and thriving Earth. As do we.

 

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Writing To You From Flare City

This is not a place I recommend you visit or aspire to be, but to drive that point home, perhaps I should take you on a virtual tour of its many destinations.

First there is Feverville. It’s a warm and cloying place where you can immerse yourself in the experience of a low grade temp.  A rise in temperature just high enough to make sure you are not left bereft of the accompanying chills. For what is a fever without those earth-rattling chills? Which reminds me, if you plan on coming here anyway, don’t forget to pack a sweater.

Immediately adjacent is Fatigue Island. This is not a location where you want to hang out indefinitely, believe me. You want to get out, the sooner the better, but there is no one else around to vote you off. And even if there was, time apparently moves at such a glacial pace that if you could muster up the energy to pack your bags, you would be doing so in such slow motion that it would be undetectable. Face it, once here, you are stuck for the duration.

Not too far away is Body Ache Development. It is called Development because no matter how many times you come by, there is always something new, something different going on. It’s an area that is filled with nooks and crannies where pain can take a hold. Rest assured, there is a special something here for every body, and for every part of that same body. Beginning at the narrow neck, it proceeds to a broader expanse called The Back. This is a wide area that can host lots of pain. And it does.

Then there are the byways, four of them, long corridors that can nurture little pockets of pain here and there. These are really dead ends for there is no jumping-off point. You can traverse them looking for a way out, but at the far and painful end you must needs make a U-turn. A U-turn that will take you back to a main component of this Complex:

Stomach Central. Here you can indulge in forbidden foods. Fried shrimp, French Fries, Coke, ice cream shakes and other sugary substances. They taste good and make you forget where you are for the moment that it takes to chew and swallow. They are classified as comfort foods only for that space of time, for once ingested they rebel, leaving you with remorse and regret as souvenirs.

None of these foodie temptations will get you home. There is no pain-free ticket to ride. No red shoes to smack together on hurting feet, no magic phrase to utter. There is only an intangible capsule called Time, and you must wait, desperately but patiently, to be ferried out and carried home.

.

 

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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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Godspeed, Mary

Once upon a time I met a sailor. A sailor in the making. It was a dreamy night, hot and humid as south Texas can be. I was not impressed, with the weather or the sailor.

In spite of that, a friendship developed. Almost against my will. I was not ready. Not ready. Not ready.

One day I let him convince me to visit his mother. We drove to her one-bedroom apartment in Houston. I was unsure what to expect. I was a divorcée with a five-year-old son. This sailor was her one and only son. The sun and the moon rose with him.

She accepted me with open arms. Boisterous, talkative. There were no corners in her home where dull moments could hide.

She spent that night in the living room with her son, giving up her bed for me to sleep with mine.

In the morning, unbeknownst to me, she caught her son staring at me through the partially open door. I was asleep, he said, with my long hair spread out all over the pillow. “I couldn’t take my eyes off you,” he said.

She made fun of him later that morning. Perhaps because she knew. Knew that her son was hooked.

And that she would be part of my life for 34 years.

RIP, Mary. Godspeed.

 

Mary, on her wedding day.

Mary, on her wedding day.

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Dancing Shoes

photo (1)On my way to New Orleans six weeks ago, I was pleasantly surprised at the TSA check.

“You don’t have to take off your shoes,” the lady said.

It was like Christmas and my birthday rolled into one.

Imagine how such a small thing can mean so much.

I prefer to travel in tennis shoes. They are comfortable enough to be worn for long periods. The drawback is they don’t slip on and off.

That means that besides having to hurry and stuff my laptop and tablet back into my carry-on, grab my purse before it whizzes by, all while holding onto my boarding pass and ID with one hand, I have to go find somewhere to sit to put my shoes back on.

It’s a travel nuisance, but when you have fingers that have a tendency to not cooperate the second you want them to, it seems to be a little more than that. Stress makes my fingers sluggish. Or maybe they just get sluggish when they have to do things I don’t want them to do.

As luck would have it, I had to go home for a few days after three weeks of being here. And again I got the same gift. I began to feel special. Wow! I rated being on the OK-to-not-take-your-shoes-off list.

But returning to New Orleans once again, I was rudely awakened to reality. No more special treatment for you, RA Lady. This time I not only had to remove my shoes, I had to submit to being x-rayed. At least I didn’t have to wear one of those designer gowns they hand out at doctor’s offices and hospitals.

It must have been a fluke, both times. I’d hit the shoe lotto and now I was broke again.

But you know what? After almost two months of being away from home, I’ll take my shoes off and walk barefoot all the way to my gate if they want me to. I’m tired of seeing green grass and green trees out the windows. All the windows. A big green 360.

I want to kick off my tennis shoes and slip on my dancing shoes.

I want to go to a club and hold a drink in my hand.

I want to dance to slow reggae.

I want to feel the dizzy creeping up from my feet all the way to my head.

I want to close my eyes and sway the night away.

I want one more blissfully . . . blissful . . . moondance.

 

 

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A Ten Milligram Day

Yesterday I had one of those under-water-death-fatigue day. I treated it with an extra dose of strawberries and whipped cream. And while scarfing that down I wondered, if strawberries have anti-inflammatory properties and sugar exacerbates your symptoms, do they cancel each other out?

At the moment I didn’t care. It tasted so good, it made me forget that I was moving in slow-mo. And that it’s kinda hard to chase a toddler in slow-mo. But I figured out a solution to that, too. I don’t.

She loves being chased. It’s a game, but not to Abuela. At least not on these kind of days, so I just stand still and say, bye bye. She comes running back to me because the one thing she loves more than being chased is being included.

Bye, bye is what I also say to RA, but it too comes running back to me. Sometimes with a vengeance.

I am not an athlete, unless you count raising four kids, running a household and keeping up with a profession athleticism. Nor am I a warrior, though I like to think I have warrior blood in me.

photo (15)So I don’t know how to classify what happened to my right hand two years ago when it swelled up to the point of being useless for a month. Is it a sports injury or a war injury? But injured it is and every so often it swells up again to remind me.

I keep yearly photographic evidence of my hands. To see how they are holding up under duress. Today I can see the lumps and bumps between the metacarpals, the joints at the base of the fingers. The swelling is obvious.

The pain not so much.photo (13)

The dilemma this morning was how to untwist the cap and break the seal off  a new gallon jug of tea. I’d decided to up my Prednisone from the daily 2.5 to 10 mg. A veritable shot in arm, you might say.

But first I had to grip that sucker and twist for all my hand is worth, today. I can tell you it hurt like a **** but I am nothing if not persistent. It took three attempts that left me with the reddened imprint of the cap on my palm.

photo (12)

The Arthritis Foundation sent me a little gadget to open stuff. I remembered I’d packed it and ran and got it. Unfortunately,  it doesn’t work on caps this size.

photo (14)

 

 

I could have used this back in the day when I had to ask my nursing staff to open my bottles of lemonade. I hated the thought of having to ask for help, but RA makes you humble.

It also makes you stubborn and determined. I would have my glass of tea!

And I did.

Now to wait for the extra dose of Prednisone to do its job. I think I feel it working already. Or maybe it’s the hot water I ran over my hand for five minutes. Who would’ve thought washing dishes was therapeutic? Or maybe it’s the typing. Exercising my fingers goes a long way toward reducing the pain. Idleness is the bane.

photo (17)But there is no time for idleness now.

Not with these footsies to keep track of.

 

 

 

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My Daily Bucket

photo (7)When I arrived to care for my toddler granddaughter a month ago, I was presented with this bucket. It bears a butterfly made with her footprints. “I will put it in my office,” I said, immediately wondering what kind of plant I could put in it once I returned home.

Meantime, I placed it on the dresser in my room, and it occurred to me that it was the perfect place to hold my pill bottles. Up and away from curious little fingers.

I’ve reached a point in my life where I don’t have to worry about where I place my pills. Though they each have a certain “home” in my house, it mattered not where they went. Now, I have to be conscious about the whereabouts of my concoctions.

What’s in the bucket? Prednisone, my frenemy, 2.5 mg once a day. I’d weaned off, but after a week my hands were hurting so bad I had to cave and go back on it for the duration. When I was young and raising my children, I had no idea the workout my hands took. Now every twinge reminds me that caring for a toddler is manual labor. Though with great and bountiful rewards.

There are days where my hands still hurt, like today, and my wrists as well. Foreseeing that, I packed a wrist brace, which I’ve had to use several times. I wear it at night and in the morning the pain is gone or diminished. Perhaps it’s mind over matter, a placebo effect, but I’m not questioning its efficacy.

Also in the bucket is Folic Acid, the rescue drug for Methotrexate. Nuff said. I take MTX on Wednesdays so it doesn’t rate a place inside the bucket.

There’s my eye vitamins, prescribed by my ophthalmologist. They contain Vitamin C, Vitamin E, Zinc Oxide, Copper, Lutein and Zeaxanthin. I’m supposed to take them twice a day, but usually take it once. They are mostly prophylactic. My “apple” a day, you might say. Or maybe, the apple of my eye.

There’s Vitamins B1, B6 and B12, prescribed by my PCP to treat shingles pain. It is now almost 14 months since I had shingles, but the pain is not completely gone. On a scale of 1 to 10, it is a one, sometimes a two. It depends on how that part of me is affected by my activities. But it took its sweet time climbing down that ladder. I was scared  to death worried it would be a 10+ forever.

Also in the bucket is acetaminophen (the ingredient in Tylenol). Since Naproxen and/or Plaquenil gave me tinnitus I have to stay off NSAIDS (non-steroidal anti-inflammatory drugs).  So, hello, acetaminophen, which I take once or twice a day. Some days none at all. The good days. The tinnitus is practically gone. I only hear it when I concentrate on it. And I don’t have much time to concentrate on it right now.

And of course, Vitamin D3 and calcium  supplements, which also contain D3. I’ve been on Vitamin D since 2006 and I give it much credit for my turnaround that began in 2009. I know it was a mix of things that allowed me to rise to the surface and breathe again, but Vitamin D was a major factor. I take 2000 IU’s a day. Each calcium tab gives me another 500 IU’s, so I end up with 3000 on most days.

It would be nice to say that is the extent of my personal pharmacy, but no. photo (2)

In a large Baggie in my unmentionable’s drawer are:

Gabapentin, in case of more severe shingles nerve pain,

the MTX,

Naproxen, if bursitis rears its ugly head again, I will have no choice but to bite the bullet,

the Fosamax, which I’ve yet to start. I know, I’m bad,

and most important of all, cyclobenzaprine (generic for Flexeril, a muscle relaxer). My rheumy prescribes it for sleep. And we know if we don’t sleep, our pain is that much worse. I take 5 mg nightly and when it’s been a painful day I take ten.

No longer in the bucket, its empty husk having joined the inhabitants of Baggie World, is Acyclovir, the antiviral my rheumatologist ordered for a year to prevent a shingles recurrence, Lord forbid. I ran out a few days ago, but I’ve crossed the year mark and now I cross my fingers. We shall see what, if anything, develops.

 

 

 

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Tethers

My internet connection is now new and improved, and I can actually get some work done. That also means I can stream my Pandora stations at will and I find that I keep going to the same one. My two dozen stations range from Big Band music to Mariachi music, from Tex-Mex to Reggaeton, from Disco to R&B. Yet I find myself going to the same Reggae/Bob Marley station. I must be homesick.

Amazingly, it’s been two weeks since I left home. Things are easier now; a routine has developed and though I’ve had to dip into the honey/poison jar (the Prednisone bottle) all is going fairly well.  Carmen and I have acclimated and assimilated to each other, with each other?

We are forming a new and improved bond. The kind that naturally results from daily exposure to each other. She keeps my day full till Mom and Dad come home in the evening, but she also keeps my heart full with her smiles, her hugs and her remarkable comprehension skills. Babies must be new and improved nowadays as well.

I miss my other grandchild tremendously. Though by now I usually see her only once or twice a week, I was her main caregiver during her first two years of life and that bond, that tether, will never be broken or weakened as long as my heart beats, and perhaps even beyond. When my daughter sent me this picture, it gave me a visceral pang.

party

Celebrating at a birthday party.

Of course there is the one person to whom I’ve been tethered to for more than half my life. And though that bond has waned and intensified during the peaks and valleys as the years passed, it seems to remain unbroken.

One of the first things we found we had in common was our love of Reggae. Me, from a little Texas town, and he, from the big city of L.A., somehow connected on a little island in the Gulf of Mexico and discovered many shared likes and dislikes. It was the strangest thing, to find a person who for some reason thinks like you.

That first night, we met at a Disco no less, was spent talking on the phone till the sun came up. Now some of the Marley songs take me right back to that time. He’s not taking my absence well. But lucky for him, I have to make a quick trip home next week, when, I suppose, we shall reinforce that tether.

Meanwhile I dedicate this song to him.

 

 

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Ergonomics

–A science that deals with designing and arranging things so that people can use them easily and  safely.

–The parts or qualities of something’s design that makes it easy to use.

Source: http://www.merriam-webster.com

It was after I’d had my third child at the ripe old age of 31 that a pediatrician told me only the young were meant to be parents. I laughed because I felt old already. In nine years I’d tallied up three children and two husbands. Who wouldn’t feel old after that?

I am reminded of that incident now that I can truly relate to what he was saying. Once you hit middle age, it’s no time to start having kids, or running after them on a full-time basis. Nature even made sure of that. I guess you could call it nature’s ergonomics.

This isn’t the first time I take over the care of a grandchild, nor is it the first time after RA made its presence known. But I can hardly remember my first granddaughter as an infant and toddler, and she’s not even five yet. All I can recall is the comforting warmth of her little body as I rocked her before her naps. Emotional ergonomics.

I think the main difference now, in caring for my second toddler grandchild, is that I’m not in my own home, where I have adapted things to compensate for my unpredictable aches and pains. Physical ergonomics.

After one full week of being in charge of her care during the better part of the day, my hands are complaining. Loudly. The challenge in this new environment is that I will have to adapt to it, not the other way around. Personal ergonomics.

washing dishes

I’m opting out of using the dishwasher, and instead washing the dishes by hand. The hot water is super soothing to my aching hands. Though some things will have to remain unwashed, at least by me, as my decreased grip does not allow me to open them. Also, the cooking pots and ceramic dishes are quite heavy and tax my hands, but I bear some responsibility for that as some were gifts from me!

sweeping

Necessity is the mother of invention they say. Having a toddler insist on feeding herself guarantees mess on the floor. My broom at home is very light; the broom here is quite heavy. The answer? Carmen’s toy broom to the rescue  and her toy hoe as my dust pan! She follows me around saying, “Hoe, hoe, hoe,” until I rinse out the hoe and give it back to her.

high chair

Her high chair is beautiful. An Amish work of art given to her by her grandfather. The only problem for me is that it is made of solid wood, therefore the tray is quite heavy and hurts my fingers when I lift it. There’s no answer to that, but I do miss the plastic tray that my other granddaughter had.

I have to say the worst part about being in this small town is having unreliable internet service. Music plays a big part of my day. It’s a stress reliever, an analgesic, and a muse sometimes. One day I wanted to run my Pandora Reggae station; it wouldn’t come in at all, though I tried countless times to start the streaming. Right when my frustration reached its peak there was a knock on the door. Two friendly gentlemen stood there. They handed me a pamphlet and said, “We just stopped by to give you this.”

photo (8)

Spiritual ergonomics?

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Be a fountain . . .

. . . not a drain.

I had this terrible habit of writing down sayings that stopped me in my tracks and then not noting where I’d gotten them. Thus, I cannot attribute this particular saying, but I know I didn’t write it. And I give thanks to whoever did.

It’s good advice I am trying to follow.

Be a fountain of giving. Giving of my time to my youngest granddaughter. I have moved into her home for a spell. She needs me. I need her. She has astounded me with her vocabulary and her comprehension. At eighteen months old, I expected her to still be more of a baby than a toddler. Well, she’s having none of that. Her development is in fast forward.

Be a fountain of words. My work of course came with me. I even found a piece of luggage called “Office” to lug it all in. An office on wheels. The advertising copy promised it would fit under an airplane seat, but when I tried to stuff it in there, it wouldn’t go. Too tall and too wide.

Then I realized that the compartment under the aisle seat was narrower than the one under the middle and window seats. I had no choice but to stuff it in the overhead compartment. I’m short and the thing was heavy, but the worst part was that it had my laptop in it and I prefer to keep that with me.

We landed in New Orleans with such a bang that it would not have made any difference where my laptop was. It would have shaken, rattled and rolled wherever it was. The flight attendant joked, “Don’t forget to check the seatback for any belongings. In fact, check all over the aircraft for your belongings.” That was funny, but note to self: no more aisle seats.

Be a fountain of love. What else but love could compel me to leave the people I love to come be with the people I love. I will miss my other baby. I gave her extra kisses and hugs the last time I saw her and I lost track of how many I love you’s we shared on the phone before my flight. Her tiny little voice almost made me not want to leave.

Be a fountain of health. My personal pharmacy came with me as well. Have pills will travel. My hands are not happy that I’m not taking Prednisone anymore, the left more than the right, but since I’m right-handed, it’s not that bad.

And it’s really not that bad overall. I expected it to be worse, but I’m glad it’s not. If I keep moving, the rest of my body feels fine. It’s only when I sit too long that I feel stiff, but that might not be RA. That might just be me. One thing I know, having to chase after a toddler will inoculate me against sitting around.

And be a fountain of youth. Of course. I keep telling myself how young I still am. And nowadays, it is young. But I just have to keep reminding myself. Inside, I still feel 20. And outside, I’m glad I’m not. If I could be 20 knowing what I know now, maybe.

Hanging out at South Beach, obviously not missing Na at all!

Hanging out at South Beach, obviously not missing Na at all!

Watching Abuela work and ripping apart her Post-its.

Watching Abuela work and ripping apart her Post-its.

 

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