Monthly Archives: January 2015

The Word “No”

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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.

Foot Love

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“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

The Cost of Being Well

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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.

 

Retinal Hemorrhage

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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?

 

 

Crook of a Crooked Finger, Redux

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I am humbled by my end-of-year WordPress report. Apparently this little blog gets around. Way more than I do. It makes me feel a little guilty for leaving it on autopilot sometimes.

And it seems that for some reason many readers like this post a lot.

I myself like the photograph I attached to it.

March 12, 2012

 

I’m not sure why I do. Maybe because it’s proof I beat RA back, and my finger recovered. Maybe it’s because that’s what this blog, and part of my life, is about. Beating Rheumatoid Arthritis. Over and over again.

I say “part of my life” because I refuse to let RA encompass all of my life, my every waking moment. Sure it forces itself to center stage time and again, but I work to bring that curtain down ASAP. This particular show is not entitled to go on with impunity.

And I say “beating” because it’s an ongoing, never-ending conscious battle. I don’t mean to say that it rears its ugly head every single day, that it forces limitations on me every day. It did once, but I beat it back.

I am very lucky in that way. Very, very lucky, in many, many ways. And as long as my heart is beating, I will write about beating RA.

This doesn’t really qualify as a “new” resolution for this coming year. And I won’t bore you with any resolutions I might have made. I know there is only one that I will adhere to and that is: write, write, write.

Thank you dear Readers. I wish everyone the best of health for this and all the years to come.

Feliz Año Nuevo!