Tall and Straight

Life throws you curveballs making you scramble to figure out how to handle them. Do you catch them or evade them?

In the middle of personal tumult, you reach for what or who is handy to give you comfort. It could be a person you are close to, your spouse, your child, your sister, brother, cousin.

Sometimes, when the hurt is too deep, or when it’s too difficult to relate to anyone or for anyone to relate to, we might find comfort and solace in an artistic rendering. In an artist whose beautiful artwork lets you melt into the scene they painted and allows you to leave the pain or the heartache behind. If only for that moment.

Sometimes it’s a book whose author has written in such a way that it swallows you whole, so completely that you forget the here and now. A book that you can touch and hold and smell its papery scent. A book whose spine sits tall and straight on a bookshelf waiting for you, as an example of how you should stand up to adversity, tall and straight.

Sometimes it’s a film, or a TV show that allows you that escape, that makes you laugh or even more movingly, makes you cry, and therefore forget your own pain. You reach for that helping of relief time and again. You buy the movie, or watch all the reruns that you can, taking a breather from what hurts.

And sometimes it’s an actor’s portrayal of a character that reaches out and escorts you into their world. That grabs your consciousness and never lets go. Years, decades pass and that character stays the same, always there, bringing you a dollop of delight, dependable in their sameness. The world around you might twist and tilt threatening to jettison you without warning, but this character, this story, affords you a reprieve. It may only be for a little while, but it doesn’t matter because you know you can visit with them again.

One such presence for me was Leonard Nimoy’s Mr. Spock on the original Star Trek.  He was always so stoic. So rational. So logical. He was a bastion upon which Captain Kirk could hang his hat, a solid presence who would always be there for him no matter how much trouble he got himself into. He could violate the Prime Directive knowing that Spock would back him up or help him face the repercussions. He could flirt with all the women of the galaxies knowing that Spock was there to take command just in case he ended up tying knots that could not then be unraveled. Spock was his unfaltering second in all that he did.

I loved Captain Kirk, but I revered Mr. Spock. He stood like a book, tall and straight. He carried planets’ worth of strength and knowledge on his slim shoulders. He was resourceful and unerring, mostly. And when necessary, he knew how to bend so that he would never break. I wanted a friend like him, but most of all, I wanted to be like him.

I know there’s a new Spock now, but there will always be only one Spock for me.

Rest in peace, Leonard Nimoy.

Live long and prosper, Mr. Spock.

 

***I had the ultimate pleasure of hearing Leonard Nimoy speak at my daughter’s college graduation. Today, I was sorry to hear that he had died.

 

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Gratified

Ever since I was diagnosed with a retinal hemorrhage in my right eye seven weeks ago, I’ve been wondering what my rheumatologist would have to say about it. I requested that a copy of my test results be sent to him from the ophthalmologist’s office. The main things I ascertained with the ophthalmologist at that time was that, yes, I could fly, as I had two trips pending. And yes, there was a 50/50 chance that it would clear up on its own.

Though I’ve been seen by this group for years, I was not comfortable following through on their suggested treatment, intraocular injections. Perhaps it’s unfair of me to say so, but they didn’t inspire confidence in me, not the kind where I would willingly subject myself, and my eye, to their prescribed treatment.

Since I did have the upcoming trips, I decided to lay low, go on about my business and wait to see what would happen. I knew I ran the risk of it worsening. As the ophthalmologist stated, “You might end up doing the shots just to get back to where you are now.”

The fact of the matter is that I see almost perfectly, when my left eye is compensating of course. When I close the left eye, it appears that I am seeing through a smudged glass door, not the whole door is smudged, just the top center portion. And with my new glasses for distance, it’s like I’m seeing 3D, as I told my son making him laugh. But as the optometrist told me, “I can’t fix what’s going on with the right eye.”

My readers (expensive compared to the 20-dollar-over-the-counter kind) don’t seem to afford me better vision than the 20-dollar-over-the-counter kind. I find that they are great when reading on my tablet or my phone, but not so great when reading on my laptop. I use an old cheap pair for that. In fact any old cheap pair as I have a pair in every room of the house. I’m not sure why the difference, perhaps it’s the distance from the screen. Who knows?

But that is what is most concerning to me, my ability to read. When I close my left eye, the words are blurred at the top and clear at the bottom. It’s possible to read, but difficult. I can’t imagine not being able to read at all. I’ve always read. As far as my memory goes, I’ve read. I don’t live one day without reading, ever.

My rheumatologist was concerned about this development and asked if the ophthalmologist had mentioned it having any relation to RA. I told him he’d said that we’d have to “work real hard to find a connection between the two.”

He agreed that I should get a second opinion and referred me to a retinal specialist he knows. Since I trust my rheumatologist implicitly, I feel I already trust this new specialist without ever having laid eyes on him. But that’s a good start. We shall see what he has to say and go from there.

Of note, my labs were all normal with two exceptions. My CRP was slightly elevated, but that usually is. It bounces up and down depending on what I don’t know. My left wrist is still bothering me, though it’s not persistent RA pain. I know what that’s like and that’s not what’s happening here.

But there is definite swelling on the left side of the inner wrist. While examining it, he turned it this way and that, twisting my fingers into a pretzel and bending my wrist in all directions without it causing a bit of pain. But then he pressed down on the swollen part and yes, that hurt!

I’ve been on very small weaning doses of Prednisone for over two months, and I would think that the wrist would have gotten worse, and the CRP higher, but there’s been no effect on it whatsoever. It’s not worse but it’s not better, so I’m to have it x-rayed. Perhaps it’s osteoarthritis because it’s not acting like RA at all.

The other abnormal lab was my white blood cell count; apparently it’s high and he wants me to repeat it in a week’s time. I explained that while I was with Carmen she caught a cold and gifted it to me. It’s been ten days now with cold symptoms, but it does take me a while to shrug these things off.

He wasn’t to be swayed from repeating the lab test even after I explained the probable cause for the WBCs being elevated. So here we go, another needle poke, but at least I’m gratified to learn my immune system does work. Somewhat.

 

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System Glitches

I went to spend a week with my precious little Carmen. I tried to keep up with my reading while I was gone, hard do to with a two-year-old commanding all your attention, and I went with no illusions of being able to post anything. By the time I got to my room at the end of the day I was pooped and ready to recoup for another twelve-hour day. I took only my tablet with me, which is serviceable for reading but not very user-friendly for writing; it’s gotten slower than molasses. I’ve now replaced it with a new one. This one is Speedy Gonzales compared to the old one.

My laptop is on its way out as well. I hope I didn’t jinx it by typing that. It’s my writing tool and I have no idea what to replace it with. I don’t want to be rushed into anything so I suppose I will have to shop around and make a decision. That way I will be ready when it never comes back from its update, which it’s threatened to do a couple of times but the Geek Squad coaxed it back.

I, on the other hand, managed to come back from my overnight updates every dawn without any coaxing. Come 7 a.m., I was ready to go. There was only one application on my personal hard drive that wasn’t (isn’t) up to par; the one that powers my left wrist. At least I can give thanks it isn’t my left foot.

I’ve learned to compensate for it, though, by instinctively using techniques that spare the full use of my wrist. After all, I’ve had since August to come up with a plan B to circumvent this little glitch in the system.

It did hurt more than usual, at times giving me sharp, continuous, stabbing pains that made me imagine I was reliving a variant of the Psycho shower scene, music and all. I would grit my teeth and groan while grabbing my wrist and pressing down on the swollen part through the brace I wore. Somehow that made it feel better after a bit, or it could have been my imagination still at work.

Poor Carmen would stare at me with her big, hazel eyes and say, “Your arm hurts, ‘huela?” “Yes, baby,” I’d squeak out, pushing on my wrist with all the strength my right hand could muster.

But I remained on weaning doses of Prednisone. Never once was I tempted to increase the dose to give myself a hit, or I should say, an extra hit. In fact, I only took an extra week’s worth with me just in case, which amounted to a mere 25 mg that I never took. But it truly wasn’t all that brave of me to leave the whole bottle behind. My doctor is a phone call away and CVS is ubiquitous.

The week flew by when I measure it by Carmen time. When I measure it by work pending, it moved along at a turtle’s pace. But all good things must and do come to an end. I’m back at my desk and running at full steam. If only my laptop deigns to keep up with me. One thing for sure, there’s no rise of the machines here.

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Strong Women

I am reading Isabella, Braveheart of France by Colin Falconer. The book itself is unputdownable. Which sounds funny because it’s an ebook. But this makes it easier for me not to part with it, to keep up with it, whether it be on my tablet, my phone or my laptop, where I’m supposed to be working.

Rarely does a story capture me in this way, but this one sates several of my appetites. It’s based on history. It’s based on French and English history, which fascinate me. It’s based on a woman, a strong woman, with whom I can easily identify with.

I don’t consider myself a student of women’s studies, but I often wonder how women did it. Since the time Eve supposedly went rogue. How did they handle life’s challenges? No matter the culture, no matter the society, women ended up relegated to second class status, if even that high.

How did they handle their personal and family needs in primitive times? How did they get up each morning to ferry the water from the river or the well and carry it home on their head or on their hip, how did they go out to cut the wood to build the fire to cook the food that perhaps they themselves had grown or gathered?

How did they deal with illness when there was no science to lead the way, or at least point the way? Many died in childbirth and there were other diseases that killed them outright. But RA doesn’t do that, not so genteelly, for it is vulgar and rude. It toys with you like a cat with a mouse.

I’m sure this scourge of a disease existed way before we ever put the wrong name to it and I wonder how all who suffered from it dealt with its invasions and assaults. What fortress did they have to shelter them from its slings and arrows? What did they do when it battered at their gates?

I wonder about all its sufferers from the past, but mostly I wonder about the women. For all that we are called the “fair sex” or the “weaker sex,” we have to be mighty in all that we do. Even while being accosted by an uninvited, malevolent presence we have to grit our teeth and bear it.

And so it cheers me when I read about strong female characters, real historical figures. Though obviously fictionalized to some extent, these women did exist. These women did persevere. These women did prevail, and even flourish, in spite of it all.

Women like Doña Antonia Avero, whom I “ran into” at the Castillo de San Marcos in St. Augustine.  avero2

I was both surprised and impressed to read
the words next to her portrait. I had not known this fact about Spanish Florida.

avero

 

I had never heard of her either, but I plan to find out if there is more to read about her life. Even at my age, I am always looking for role models, and for inspiration to help me face life with hope each day.

This might be another story I can share with my granddaughters. Already they have demonstrated a love for books and reading, which pleases me no end.

For you are never bound to one station or one place when you can read yourself away or beyond. When the portals to dreams and possibilities are opened for you by those who came before.

 

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The One Thing I didn’t Pack

st aug garageI was lucky to spend this past weekend in St. Augustine, Florida, this being the year of its 450th anniversary. Right when we got there, we were confronted with how beautiful it all was.

We’d already seen the remarkable ocean view from our room. The sound of the waves hitting the beach was soothing and addictive. We didn’t want to leave the cozy room, but we also wanted to see the city.

So we headed out and our first stop was the Castillo de San Marcos. Built in the late 1600s, it took the Spanish 23 years to build the fort, out of basically solid rock.

I can imagine their determination and their faith prow
in what they were doing so far from home in a place
they called Florida (flowery).

It didn’t take long for the sailor I married to note that the corners of the fort were shaped like the prow of a ship, with even a “figurehead” at the top.

prow2

 

 

 

 

The top of the fort was laid out with cannon after cannon. Some of them carved with intricate designs. I wondered what must have gone through the ancient artisan’s mind while he adorned a killing machine so beautifully. carved

It seemed a shame to have cannons pointed at such a pristine inlet. But I guess that was the point, to keep it serene and beautiful. To keep it theirs, though that did not happen to be the case after all.

inlet

 

 

 

 

Regardless, their attention to detail was amazing, from the curves of their rooms made of solid stone to the sharp, well-defined angles of the outer walls.

fortroom

 

 

And I suppose in testament to their faith, the doors to the chapel were centered within the courtyard, easily accessible to all in a moment of need.

insidect

 

 

 

 

We walked the grounds of this fort knowing that it was very possible one of our very own ancestors had walked here way back when. On impulse, I took a picture of my feet upon those grounds.

feet2

 

 

 

For this trip, I packed my sense of wonder, my imagination and my energy. The one thing I didn’t pack was my RA.

 

 

 

 

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And Did You See That Pass?

After my husband spent a wild day and a half in meetings, alternately being patted on the back for a job well done and being pressured into achieving new goals for the coming year and beyond, while I spent that same time snuggled up in a cozy hotel room with all the amenities, we drove to St. Augustine where we had a fantabulous time that ended all too quickly.

And I know this isn’t a sports blog, but we realized we would be lifting off homeward right at Super Bowl kick-off. But we were on JetBlue, with our own individual TVs in front of us. At one point during the second quarter, we had a slightly bumpy ride. I don’t think anyone noticed. There was absolute silence in the cabin, everyone seemingly focused on the screen in front of them, earbuds in place.

We landed right before halftime and left our seats 30 seconds too early, merely to wait in the aisle, and missed Seattle scoring a touchdown. At least that’s what we were told at the baggage carousel. We beat ourselves up over that, then raced to our car, hopped in and listened to the third quarter on the way home.

We got there in time to see the last quarter. And right at the end, after that totally awesome flippety-floppety fumbling catch, we were on the edge of our seats, drinks suspended halfway to our mouths, breath held and then, and then . . .  did you see that pass?????

Whoever called it, and they know who they are, can probably relate to the saying on this T-shirt I ran across on my travels.

tshirtmaya

 

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The Word “No”

photo (32)Reading Anne Lamott this morning, one of my favorite writers, I came across something that connected deeply with me: ‘“. . . the word “No” is a complete sentence.”’ (AARP Dec/Jan)

I was going to glance through the magazine and then file it away in the trash can, but as I flipped through its pages I kept tearing some out, to keep, to read later, which I sometimes end up never doing or doing it months later. But her words immediately drew me in.

The gist of what she was saying is that with age comes the power to say “No.” You learn to value yourself and more importantly, your time as well as your capabilities.

When I was younger and torn in different directions, I found myself unable to say no to the extra shift, to the extra committee, to the management position, to driving a gaggle of kids to the mall, to the theater, or to having my house become grand central. There was always some new kid hanging around.

I longed for the days of an empty nest, of retiring, of spending my time reading, writing, or doing nothing at all. Back then it seemed those longed-for days would never arrive, but now those days are here and thanks to RA, I have learned how to say no.

No to the request for a quilt for the Christmas Tai Chi raffle. If there’s anything I love more than quilting it’s giving them away. But I was recovering from an illness and dealing with the stress of the holidays. It had to be no.

No to the short-notice invite from my son to take me to brunch. It was Sunday morning; my husband was out on his road bike. I was cozy in bed reading and tired from a night out. As much as I love spending time with my children, I knew I needed to recoup. It had to be no.

No to housework duties when I feel a flare coming on. This one I especially feel no guilt for. What is that saying, a woman’s work is never done? It sure feels like it and I’ve done enough of it. Now I have to take care of me and enjoy life. So when that feeling hails, I answer by battening down the hatches. I stop. And say no.

Conversely, I have learned how to say yes. Yes to my family taking over some duties for a bit. Yes to my daughter making dinner not quite my way. Yes to my husband vacuuming not quite the way I’d like. Yes to the coffee and bagel that pops up at my bedside the mornings I don’t feel so hot.

And yes to the things I really want to do. Like agreeing to accompany my husband on a business trip and extending it so that we can visit St. Augustine, Florida. I’ve wanted to go there for years, to experience the history of it. He tells me he’s made it his goal to fulfill my bucket list regarding travel, and so we leave in a few hours. It should be crisp and cool and beautiful.

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Foot Love

“Guess what?” I said. ”I did an inventory of my shoes and guess what I found.”

He leaned back in the patio chair and gave me the look. “That you have too many shoes?”

I returned the look. Can a woman ever have too many shoes?

“No,” I said, “I found that most of them are the same brand.”

I paused for emphasis. I wanted what I said next to sink in.

“I’ve been buying comfort and I had no idea I was buying the same line of shoes.”

He studied me as if actually digesting what I’d just said. I knew better.

But no matter. Since I picked the profession that I did and hit hospital floors running many moons ago, I have been after comfortable shoes. Walking, running, 12 to 14 hours straight on those hard, unforgiving floors was not exactly a recipe for foot pampering. Now adding, ahem, a certain amount of years, plus RA/RD, comfortable, supportive shoes have moved from a want to a definite must have.

On this particular day, I’d been to see the optometrist. I’d decided my eyes needed some TLC after the bad news I’d received at the ophthalmologist. I ended up spending the equivalent of a month’s grocery money on two pairs of glasses, reading and distance. I didn’t want to deal with the whole learning curve thing required with bifocals, and why put that up-and-down-bobbing strain on my neck?

We’d met at The Cheesecake Factory for dinner after my appointment. I had a two-hour wait before the glasses would be ready so we hit Macy’s. He wanted a shirt and I headed for the shoe dept. Because I have two upcoming trips to cold weather country, I wanted a closed shoe with a heel, a shoe that was a cross between a low boot and a clog. And of course it wouldn’t hurt if the shoes looked good and made me feel like I looked good

But the main criteria the shoes had to meet was that they be out-of-the-box comfortable. When I found the cushiony softness I sought, I was not surprised to find that they were Clarks®. I was, after all, wearing buttery-soft (or as they call it: “marshmallow-soft”) leather sandals of the same brand. I kept them on, placed my sandals in the box and went to give the man some money.

This “coincidence” prompted me to investigate my shoe collection when I got home. I was curious as to what was left in the closet after I’d given away several pairs of shoes that were still fairly new. And the reason they were only slightly worn is because they’d failed to provide the comfort level I craved and needed.

Halfway through my nursing career I’d given up the white shoes and wore black. And even though those were more stylish, they were still work shoes. My feet have taken a beating over the years and today, when comfort is even more of a priority, I don’t want to have to resort to wearing “work” shoes again.

I want/demand style. Style reminiscent of my twenties when I sailed through life in clogs and jeans. That reminds me, I need more jeans. For the trips, you know.

 

and have some fun!

and have some fun!

Ready to kick my heels

Ready to kick up my heels

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The Cost of Being Well

I’m still debating the eye thing.

There was so much coming at me so quickly that I focused on just one bit of info. What size needle gauge? (30) What immediate effect will it have on my vision? (“Some patients report seeing bubbly for few minutes.”)

I said I had to coordinate with someone to drive me, at least for the first one. It’s not the distance I said, it’s the traffic. You need more than two good eyes some days.

But what I really should have asked is:

What is the med?
What are its side effects?
What is the cost?
How much will insurance cover?
And: Is it experimental?

That’s why it’s recommended that you take someone with you when you go to the doctor. I’m everyone’s patient advocate for my family, but who is mine? I have the luxury of working at home. I work at will, when I have the will. The rest of my family doesn’t, they have to show up at the office every day. And anyway, it would be like the blind leading the blind.

Of course there is such a thing as moral support and I know I won’t have to go alone if I don’t want to. But in the end, all I could think of during my time with the doctor was: A needle in my eye? Are you sh*****g me?

All this got me to thinking of drugs and medicine in general. Things are changing a bit. Insurances now have to specify how much goes toward your care and how much to running their company. But what about the pharmaceuticals? Who’s yanking at those reins?

AARP Bulletin (Jan/Feb 2015) has a good article on specialty drugs. The first on the list is Humira. According to their chart, it had 5.4 billion in sales for 2013. Billions. I can’t even comprehend one million, let alone a billion.

When I was on it back in ’06 and ’07, the pharmacy said it cost $1,500 for two shots. My prescription was for an injection every two weeks. So every month I doled out a co-pay of $250. I have no idea what it costs now, but something tells me it’s not less.

A while back my ophthalmologist put me on Restasis to treat dry eyes. When I went to pick it up at the pharmacy, I almost lost my cookies. My co-pay was forty bucks, but the actual cost of the prescription for one month’s worth was $367. You’d think the sting you feel when you use the drops would be insult enough.

I won’t even spend that much on a quality leather purse, maybe at a nice resort hotel for a couple of nights, but geez, louise, how can anybody afford to be sick?

Sick on a chronic basis. Or even, sick on an acute basis. A few weeks ago, I got the insurance statement for my five-day hospital stay in November. If the numbers are true, I could have bought a very nice car with that amount.

 

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Retinal Hemorrhage

Looks like I started the year with a bang, or an “explosion” as the retinal specialist stated.

On New Year’s Eve, I went to see the ophthalmologist one week ahead of schedule. I was due for a six-month follow-up. Since RA made its debut, I’ve had yearly or biyearly eye exams. This time he wanted to keep a closer eye on me, as it were.

Sunday the 28th of December, I woke up with a blur in my field of vision. I thought my reading glasses were smudged, but no, it was my right eye, not the glasses. It didn’t change for the better or for the worse, so Monday I called to move up my appointment.

I knew the news would not be good, so I was not quite receptive to all he said. Once I heard the word “hemorrhage” my brain went on overload. It didn’t really matter at the moment that he wasn’t going to treat it, that all he said was to come back for the specialist.

This past Monday, I went back and absorbed the news, even as my eye had not yet absorbed the blood that had leaked out of a retinal vein. At first, the retinal specialist called it a stroke and after that explosion sounded much better.

The ophthalmologist called it a “retinal hemorrhage” and he took the pictures to prove it. He also wanted to do a test where dye would be injected into a vein in order to visualize retinal circulation. It was the afternoon of December 31st. I wasn’t in the mood and I could hear the lack of enthusiasm in the tech’s voice when she said, “I’m the only one here.”

So it was done this past Monday. The tech told me it was a natural dye made of carrots and tomatoes. (?) I took his word for it and signed consent. When injected, it felt like a hot brick had been applied to the back of my hand and turned it a fluorescent yellow for 24 hours. The huge yellow spot on the back of my hand is now a purple/green bruise and four days later the site is still tender.

The specialist’s recommended treatment is monthly injections (I didn’t ask of what med, my brain was too busy receiving to analyze) for at least six months. He says I have a fifty/fifty chance of it resolving itself. And if I wait too long it could get worse and I’d be doing the treatments to get back to where I am now. Still, the thought of a needle in my eye . . .

The vision in my right eye is worse in the morning, as I have read it normally is due to the blood settling during sleep. As the day wears on, it’s hardly noticeable. It’s a small blurry spot right below where the twelve is on the face of a clock.

My one concern on Monday was flying. I have two trips scheduled in the next five weeks. When I asked if I could fly, he said, “Yes, you can fly.” It made me imagine myself with a pair of wings floating away and reminded me of the joke about the postoperative patient who asks his doctor if he can now play a particular musical instrument. When the doc says yes, he responds, “Good, cause I never could before.”

My other concern was computer time and that was given the green light as well. Today I see the optometrist. I’ve never used corrective lenses, other than reading glasses, and my vision is not 20/20. I think at this point my reading glasses could use some help, as I am doing a lot of reading and writing, and will be until all becomes a blur forevermore.

Has anyone done this sort of treatments? And if so, how did it go?

 

 

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