Wednesday, May 29, 2013

News from the Arthritis War Front

Lupus, ruled out. Gout and pseudo-gout, also nixed.

My official diagnosis, as of this morning, is rheumatoid arthritis. So begins the newest fight in my life.

While I was awaiting the test results, my moods have consisted mostly of anger and frustration. I don't have time for this s---! I'm a caregiver, family member, therapist, friend, lover, and overall eager explorer of life, with all its myriad, delightful aspects. This arthritis B.S. was not part of the plan!

When I first suspected what was going on, I recalled my late paternal grandmother. Shortly after we moved here to California in 1964, she began to complain--loudly, bitterly, and without end--about her "ar-thur-ITE-issss." Grandmother C. was not a happy person; right after we settled here, she promptly decided she hated California and "all the crazy Californians." She isolated herself, and rebuffed any attempts of others to reach out to her socially. Mostly, I remember Grandmother sitting in the living room for hours at a time, bemoaning her loneliness--and taking massive amounts of aspirin. Her "ar-thur-ITE-issss," by the way, was never confirmed by any doctor. She rarely went to a doctor more than once, especially if a diagnosis was not to her liking.

I am not going to be another Grandmother Cook.

No, dammit, I'm waging a massive counter-offensive. My primary doctor was positive in his presentation, saying that treatments are continuing to be more effective in cases like mine. As startlingly rapid as the onset has been, I'd like to think managing arthritis early on will have its advantages. As soon as I got back to my car, I called and made the appointment with the rheumatologist. The earliest I can get in is June 26, but in the meantime, I'll take my Mobic and keep reading up on the Arthritis Foundation's website. They've got a wealth of information on diet, exercise, and other everyday strategies for maximizing mobility and minimizing pain.

Writing and typing are do-able right now. I've already become skilled at grasping a pen while allowing my right index "sausage" finger to stick straight out. I've found a way to support my wrists when I'm on my keyboard. A friend uses the Dragon Naturally Speaking Home computer program. I've been fascinated with observing her using it, and now it may be time I got on board with it.

Other things are going to call for adaptation -- the opening and closing of plastic bags is pretty tricky, as are hooks on clothing and jewelry. Moving a casserole dish calls for creativity when my left hand doesn't want to mind me. If it's not a hot dish, I use my right hand and balance the casserole on my left forearm, but there must be a better way. The manual can opener will have to go in favor of an electric one. Turning pages, texting, and counting coins in front of an impatient cashier are also interesting tasks. So many things to think of that I used to take for granted!

And then...there's taking care of Mom. I'm so grateful for Esmeralda, who has stepped into her role with such cheer, reliability, and professionalism. Sometimes, though, when Esmeralda isn't here, I have to take over the tasks. Changing clothing, diapers, and bedsheets were a snap a mere month ago. Now it's a painful scenario for both Mom and me. I try not to wince or groan, but I'm not always successful at hiding my discomfort. Mom, in turn, feels bad, and wonders out loud if she can "do anything" for me.

With regard to my dear gentleman friend, I feel so remorseful when I snap at him, too. Needless to say, pain isn't the best mood enhancer. So far, he's patient and understanding. Suddenly, I have a glimmer of empathy for "grumpy old people," including my grandmother.

Still, I'm very hopeful. I've got the Arthritis Foundation website, http://www.arthritis.org/, bookmarked, and try to become as educated as I can about this disease. On my immediate to-do list is their Walk with Ease program. Not only do I want maintain my mobility, but there's the embarrassing reality of how much I currently weigh (No! I'm not going to confess it--here or anywhere else online. It's a secret among my healthcare professionals and me.).

As a proactive step toward comfort, I got myself a left wrist brace while at the pharmacy today. Allow me to show it to you. It takes getting used to, but my wrist already feels better with the support.



The AF estimates 50,000,000 of us adult Americans and 300,000 children deal with arthritis. If you can, look at the video entitled, "Faces of Arthritis." I'm glad to join this fight, because there are so many of us on the same side.

Saturday, May 11, 2013

May 11: Thoughts of the Garden, Our Anniversary & Mother's Day

It's too early to bug people with phone calls, and paper work can wait. No clients till mid-afternoon.

Last evening, while enjoying my House reruns, I tried to hop on my recumbent bike and pedal, as part of my efforts to recover my right knee mobility. Alas, my knee would not yet allow even one cautious turn, dammit!

So, I decided earlier that today was the day to carefully venture out into my long-neglected back garden and do some work. No bending, and definitely no kneeling to carve out weeds, but certainly it's okay to clip off the dead roses and make room for more blooms. I'll just fill up a green barrel and let Eric deal with it when he visits next week. And where's the harm of dragging the hose to different spots and allowing the fountainhead sprinkler to rescue the poor, parched areas? It's time.

Being outside was an immediate mood boost, with the mild temperature and a clear sky. I thought of a Young Rascals song I loved while back at John Muir Junior High (it wasn't "middle school" then).

I remembered then that today would have been our 30th wedding anniversary. Given that we married in a small, quiet rite in a friend's home--breaking the news to family and friends afterward--the day has been celebrated in my private thoughts ever since.

Lyle liked my gardening pursuits, so what better way to honor this day, and his memory, than to reacquaint myself with the out of doors? And he also liked this Rascals song.



I also wanted to share an image of my son's Mother's Day gift. He, and everyone else who's close to me, knows well my unpopular distaste for the whole holiday, and bless him, he still feels he has to "get me something" to alleviate his social guilt. The offbeat humor of this token won my heart, and I welcomed his sentiment:



Now, I have to figure out where to display it. (Haven't moms throughout time had the same thought about the sweet little knickknacks they get each May?)

I'm in a better mood than I've been for quite a while. Now, to savor those rose petals...

Wednesday, May 8, 2013

Ugh! Crash landing.

I've been doing pretty well since my knee surgery last Friday, thanks to good doctors, good supportive help at home, and good meds.

Last night, however, I think I hit bottom, hard.

The pain began at about 6:30. Strange, though, it wasn't in my knee. I had fiery ache (the only way I can describe it) all over...my neck, my shoulders, my right arm, my back. It was all I could do to get up from my seat (after contemplating it with dread for about five minutes) and drive home (2.2 miles) with extra caution (by now it was about 7:30, and traffic had thinned out).

Easing myself into bed soon after, I fell into a sleep meant to escape discomfort, and then awoke at 3 AM. My Ultram bottle reads, "Take one tablet every 4 hours for mild pain, and 2 every 6 hours for moderate to severe pain."

Two it had to be.

I'm not a habitual user of analgesics, and the fact that it's now 11:53 AM, and I'm still a little fuzzy. Thank goodness Esmeralda is here to help with Mom, and it's my regular day off.

Postoperative pain/recovery. Great, two more subjects to google obsessively. As much as I love Google Scholar, I'm just not up to the heaviness of some of the material today, and then my search could extend to the other end of the readership (Ladies' Home Journal, etc.).

This episode is another reminder that I'm not invincible. Gee, it was only outpatient knee surgery. Whiny, wuss, drama queen...labels I don't like to assume. I think the answer is to just dial back the pace a bit, as one of my Facebook friends and former high school pals had gently suggested.


Saturday, May 4, 2013

The Knee: Expanding the Meaning of "Okay"

The knee surgery is over, occurring approximately 19 hours ago. According to my orthopedic surgeon, it was a pretty straightforward fix.

One of the hardest parts, actually, was forgoing my morning thermos-full of coffee yesterday, a key ingredient in my breakfast. That, and having to remind myself moment-by-moment to NOT drink any water, or take my now-routine "senior pills" (Omega-3, Vitamin D, and a 50+ women's multivitamin). Not even being allowed my anti-inflammatory pill was beginning to affect my comfort. As Laura, my dear friend and expert geriatric caretaker, bundled me into her vehicle and drove off to nearby Glendale, I kept up this manta, this will be over soon.

After an impressively efficient pre-op, the anesthesiologist gave me "a little something just to relax" me. Relax, indeed; the next thing I remember was hearing a cheery nurse say, "Hey, honey, you okay? It's all over."

Laura schlepped me home, and in my feel-great afterglow, I seem to recall telling her, "Yeah, the doctor says I can walk on this as much as I can tolerate." She guffawed, and cautioned that my momentary can-do confidence was influenced by the anesthesia. "Just see how you feel tomorrow."

Once home, I was ready to party. I decided I deserved some post-op comfort food. I shared a steak-and-cheese pizza, barbeque wings, and diet Coke with Esmeralda, the newest member of my mother's tag-team of care providers. My base camp was set up in the living room, with Law & Order reruns as background noise. I wasn't capable of much focus; I kept reaching for my 8-inch-high stack of magazines, picking one at random, then perusing it for about three minutes before putting it back down. Poor Tiggy, usually so blase, kept coming over with wide eyes, wondering why Mom was lying wasted on the sofa on a weekday.

Moments of "This isn't very productive" messages instantly gave way to "Yeah, so what?". I became strangely fascinated with my discharge paperwork, with its list of at-home exercises I was to begin as soon as possible...tomorrow maybe...

3 PM. "Purple haze" was giving way to "When's the pharmacy going to get here?" When the doorbell finally rang, I almost forgot my condition, and Esmeralda had to remind me that she also could answer it.

Little blue bottles of Ultram and Toradol...come to Mama!

8 PM. It was amazing how fast post-op sleepiness came. And how wide-awake I then felt at 11:30. I resisted the temptation to trundle out with the walker to watch TV, opting instead for nighttime classical music radio. That cushy pillow between my knees felt soooo good...ahhh...

5 AM. My usual wake-up time. Forgetting yesterday's events for a moment, I started my usual slide to the bedside, and was brought up short by the massive wrapping around my right knee. Oookay, I need to make some adjustments...

I eased myself up, and was amazed that the sensation was more rigidity than pain (which evened out over the next hour or so). Yeah, those exercises are going to be necessary.

While leaning heavily on the walker, I began to consider how easily a patient could develop carpal tunnel. Last week, my new crutches were simply handed to me at the front door by a delivery person, without even a cursory how-to instruction. My use of this equipment has been by a self-taught process. Is this more often the case than not? How many others out there risk injury by not using assistive equipment properly? This is a topic for another time.

I checked in on my mother, reminding her that Esmeralda would be here momentarily to assist with her morning routine. The fact that Mom remembered this arrangement was a good sign. Anticipating the front door opening filled me with relief. It's another sign that I won't be a wounded caregiver for long.

Hobbling around for brief periods of time, followed by exercises prescribed by the doctor. Showing Esmeralda the breakfast routine, then staying out of her way so she can assist both Mom and me. It's an elaborate dance.

I can do this. I will be okay, and then eventually more than that.

Thursday, May 2, 2013

On Becoming a Chessmaster*

*Nothing to do with the board game, by the way.

In order to conduct my life these days, I have had to call upon whatever executive skills I have -- and even those I didn't realize I did.

Life is always chock-full of inconvenient occurrences. Right now,there's the pool of water on the utility room floor, most likely from a leak in the refrigerator filtration...the pharmaceutical refills...a mother who has decided she DOESN'T WANT ME to do necessary care for her this morning...the work-related deadlines and paperwork facing me this morning...all to be dealt with before my knee surgery tomorrow.

Whatever. One thing at a time.

All the while, there are these slow, subtle changes in my health. I've already written plenty about my knee injury. When I went to the orthopedic surgeon on April 22nd, he used a detailed wall chart to point out to me what was injured, how it probably occurred, and how he was going to go in and fix it. I felt like I was in a medical school lecture hall. Fascinating...but just being given (for me) what was "TMI" made my knee throb.

And now...my hands. I recently posted my layperson's opinion that my left hand's ache has been due to my improper grip of The Cane. Then, in some private moments of honesty, I have had to acknowledge that more might be going on here.

For about a couple of months "pre-knee," I've noticed pronounced swelling, stiffness, and warmth on my right index finger. While reading the Arthritis Foundation's website, http://www.arthritis.org/, I saw the word "sausage." OMG, my finger looks just like that! Then, taking a swallow, I looked more closely at my left hand, and admitted that the top of the knuckles are beginning to puff, too, even with my ergonomically-correct cane grip.

Gripping a pen, with right index finger extended stiffly out, is so awkward. Typing on this keyboard, ditto. Trying to tend to my mother is getting more difficult. And the list of impositions goes on...

Let me clearly say here, I'm not qualified to diagnose arthritis, even in myself. This is a conversation I need to have with my doctor, and the sooner the better.

Going back to the chessmaster metaphor, I find myself going into strategy mode. How can I cope with this, if indeed it is the onset of arthritis? I've begun reading articles, online and in print, many of which include the word "fight." Line up my game pieces, survey the other side's moves, proceed aggressively but thoughtfully...

One idea that comes to mind is to investigate any treatment clinical trials that might be available. In addition to making any interventions affordable, I'd be honored to contribute to the necessary research for prevention, treatment, and eventual cures of arthritis. Education. Treatment compliance. Cooperation with my doctor.

All designed to gear up for a successful battle for a good quality of life.