Wee beasties

As  you might have guessed, today’s post isn’t specifically about rheumatoid arthritis. It’s about my wee beasties.

AnxiousLogan
"Do you have to point that thing at me?!"

This is Logan. He’s a Queensland healer/border collie mix. He’s a bit over 13 years old now and he’s always been very shy about having his photo taken. He’ll sit still for it, if he must, but he’s very anxious for the whole ordeal to be over. I took this one with my cell phone — it doesn’t even look like a camera, but Logan knew I was about to take his picture anyway.  You know those old stories about how there are some people who refuse to have their photo taken for fear that the camera will somehow steal their soul? Maybe that’s what Logan thinks, too, as I tell him to sit, and stay, and raise my camera. If so, he’s just as brave as he is anxious.

OhPIBLogan and my 14-year-old tuxedo cat, PIB (Puss in Boots) can always rustle a laugh out of me, no matter how tired or achy I am. When my fingers hurt, Logan lets me sink them into his warm fur — it’s so thick, I can lose my fingers in it up to the first knuckle. PIB is my wee shadow. Wherever I am, he’s there, somewhere close. He’s good at soothing aches, too. He’ll drape himself over my sore hip or ankle or knee, if I’m laying down, and let his furry warmth sink into my joints. And as you can see from this photo of him, he’s sort of a ham when it comes to cameras.
Although I did my workout this morning, bright and early, I’m really fatigued and sore today. My beastie buddies are helping me keep things in perspective, however, as they put up with my whims. And I love them for it.
Companion animals are good for us. Their uncomplicated acceptance and affection, their soft fur and warmth, even their purring and nuzzling touch the parts of our brains that have to do with pleasure and comfort, and cause a release of seratonin, a chemical that helps sooth pain, relaxes our tight muscles and puts a smile on our lips. Logan and PIB are a vital part of my life, my wellness.
Do you have pets? Do they help you deal with pain, fatigue and low spirits? I’d love to know. And thanks for stopping by!

Apprehensive

It’s a little after 7 a.m. I’m waiting my turn in the bathroom (daughter is prepping for work, son-in-law-to-be is heading out with her on his way to a physical therapy appointment. When they’re done, I’ll dress in my workout clothes and head to the gym for my 45 minutes of strength-and-cardio training.

I’m a little apprehensive this morning. My right pointer-finger is full of a nauseous ache; the other fingers are twingy and sensitive, as usual. And of course, all of the resistance machines involved in my workout require my hands – some actively, others as braces.

So how will I do? I’m enjoying these workouts. They’re vital for any numberexercise-cartoon of reasons – toning flabby muscles, working and strengthening my body and heart, burning calories, lowering cholesterol and blood sugar levels without additional drugs. As I get stronger, I’m counting on the fact that strengthening my muscles will be beneficial as I deal with rheuma flares. I’ve doubted, a little, the fact that the rheuma is active and “severe” again (as my rheumatologist describes it) because until recently, it’s been mostly in my hands and mostly twingy.

But I don’t doubt anymore. Each day, each week re-introduces a heightened level of pain. Bathroom is free. Can’t put it off any longer. I’ll check in later.

Update: Well, that wasn’t so bad. Sure, that particular finger is shouting at me right now and my hands are sore, as usual, but I can deal with this. Today, the rheuma didn’t stop me from moving anything — which pleases me to no end. Really. The icing on the cake is that I worked all my muscles, got sweaty and kept my heart rate up and steady for a little over a half-hour. And the icing on the icing? I had fun.

Wonders never cease.

Fighting the dragon

I’m no St. George buRheumaDragont
I’m hunting my old dragon
just the same.

Known long as Rheuma
he’s wily-strong with blunt fangs of dull steel.

Rheuma sneaks unseen
from behind grocery carts
and dogwoods.

With malice he slinks
from beneath my bed to curl
in my joints.

Clad in Arava
bristle-armed with quiet anger
I push on.

Rheuma waits for me
crouched, radiating misery
his bite swift.

He lunges at me
sinks his teeth into my hip
and clamps down.

But today my sword
swings, slices Rheuma deep and
wyrm-blood flows.

Dragon and I
retreat to our lairs overwhelmed
pained and tired.

I’m no St. George and
my dragon will never die
but I’m brave.

The power of sleep

allcreatures

RA Guy put up a post today about his recent, two-week-long battle with truly awful rheumatoid arthritis pain. Like most of us who have the disease, I understand and empathize with him as he writes about it, particularly the shoulder pain. I’ve been there. My shoulders were often the site of rheuma attacks. (Not so much now, at least not yet. Fingers are crossed …)

Guy wrote clearly and descriptively about the pain, but he also writes about how he coped, both physically and mentally.

Toward the end of the two weeks his doctor offered him sleeping tablets. Guy writes about how he’s always been reluctant to take sleeping aids (and with reason). This time, he took them – but just half-doses. As a result, he was able to get several longish, uninterrupted stretches of sleep over a period of a few days. Not full nights of sleep, but a lot more than he’d been getting.

Now, and for the last two days, he’s feeling much, much better. The pain, while not “gone,” is mild and bearable. He’s on a “streak,” he says.

During the initial, dreadfully painful years after I was diagnosed with rheumatoid arthritis, I did a lot of thinking about it and what might be done to relieve the flares of pain. I knew for a fact that when I was able to sleep deeply, and without waking, for a good stretch of hours, I generally felt better. My body needed that rest. More, my mind needed it.

The late Dr. James Herriot, the British veterinarian who wrote about caring for the animals and people of his beloved Yorkshire Dales in the 1930s, wrote a chapter in one of his books about a little dog. As I remember it, the dog had been grievously injured; Herriot patched the little guy up, setting his broken bones and stitching his wounds. He was pleased with himself – the job had looked impossible at the start, but after hours of concentrated perseverance, he’d succeeded. The little dog would live and, once healed, be almost as good as new.

But the little guy didn’t recover well. He was in terrible pain. He was dying in spite of the vet’s dedicated work. Herriot wrote frequently about how animals experienced and coped with pain, at least as he perceived it. He felt that because animals couldn’t really understand why they were hurting or what it was that was hurting them, serious pain frightened them. They were unable to flee this particular threat, and the constant flow of adrenaline exhausted and weakened them.

He looked into the little dog’s eyes and saw abject suffering and terror. He’d given the animal the usual dose of painkilling medication, but it wasn’t enough. The trouble was, a larger dose would kill the dog. But if it continued to suffer this way, its own terror would certainly kill it anyway.

Herriot was flummoxed. That night he got into his books. He read and read. It bothered him deeply that the dog was suffering like it was – and he knew if he could just get it through the next few days, it would heal enough to cope.

So he took a huge risk and injected the dog with a drug that would put it to sleep. Too much, and it would die. Too little, and it would do no good. With his heart in his throat, he took the little animal to the very brink of death, and monitoring it closely, kept it there for several days, letting it sleep and sleep and sleep.

Herriot’s theory was that if the dog was sleeping and unconscious, it wouldn’t be feeling the pain of its injuries, and thus would also not be in a constant, silent state of sheer terror. In sleep, its body – and mind – could rest and heal. He wasn’t sure if it would work. He’d never heard of anyone trying this before, and of course the risk of accidentally killing the dog was ever present.

To his relief, it worked. When he stopped injecting the sleeping drug, the little dog woke up. It was still in some pain, but now the painkiller he gave it, in safe doses, was enough to keep it comfortable. The animal lived – and to Herriot’s delight, it healed and went on to live an active long life, bringing great daily joy to its elderly owners.

A happy ending.

When I’m experiencing a bad flare – and these can often last days and days – sleep is hard to get. The pain wakes me over and over in the night, and it takes a long time to find a comfortable position and get back to sleep. Sometimes I can’t. So on top of the pain and its attendant fatigue, I’m sleep deprived. Exhausted.

I’ve often remembered that story about James Herriot and the little dog he saved by helping it sleep, and I’ve wondered how such a treatment would work for humans. Then I shake my head. There’s no way a doctor would risk the life of a human being that way; certainly not the life of someone who has chronic, debilitating pain but is otherwise healthy.

I understand the stance of the healer, but at the same time, I’m frustrated. Pain starts a vicious but instinctual cycle going. Pain makes us anxious – we want to “get away from it,” but we can’t. That anxiety makes us tense. Our muscles tighten up. We breathe faster, more shallowly. And that increases the pain, which makes us more anxious … and so on and on.

Narcotic painkillers interrupt that cycle to a great degree. So do other pain medications and techniques, like electrotherapy, ultrasound therapy and acupuncture. But I wonder, particularly after reading RA Guy’s post this morning, if simple, deep, uninterrupted sleep wouldn’t work just as well. Sleep that would give our minds a rest along with our bodies. Sleep deep enough that, when we woke up, we’d be rested and stronger, perhaps more able to cope.

Unlike injured or sick animals, we pretty much know why we hurt. Unfortunately, that knowledge isn’t always enough to help us avoid that awful cycle of pain-anxiety-more pain. Wouldn’t it be wonderful if we could simply sleep through it?

Fall follies

raking_leaves_1I felt way too good yesterday.

It was beautiful outside. Mid-60s, sunny, a hint of woodsmoke spicing the cool fall air. I spent the morning indoors, busy with my laptop, but after lunch I couldn’t stand it anymore. I had to get outside. I had to move.

The wind-and-rain storms that blew through a few days back knocked down scads of dead leaves. So out I went, thinking I’d sweep and rake the fallen leaves off the patio and do a general “neatening up” out there while the weather was still mild and gentle.

 And it was lovely. I got started on the sweeping, but decided that since it was so nice, I should go ahead and prune back the wild wisteria, grapevine and blackberry bramble growth that took place during the summer. The combination was closing in, once again, on the path along the back of the house. I found my pruners and got busy.

An hour later, I had piles of prunings dotting the path behind me. Much raking ensued. The resulting pile was so large, raking the whole thing to the patio seemed like a lot more work than I wanted to do. So I went in search of our old yard cart — a sort of super-wheelbarrow. I found it on the back-40, full of pots with soil in them. Husband had meant to do something with them, but had forgotten to carry on with the “something.” I emptied the cart and rolled it back into civilized territory, found a pitchfork, and started filling the cart with prunings.

Still feeling great, enjoying the sun and the light breeze, I wheeled the big, green, yard-waste can around and filled it from the yard cart, using the pitchfork to stuff everything down. I still had that sweeping to do, but my, the path looked nicer!

It was as I was sweeping the steep driveway – yes, the original idea was just to sweep the patio, but I was feeling so good! – that the rheuma caught up with me. Suddenly I was completely exhausted. My feet started aching. My hands were twinging angrily. My right knee got creaky and shot painful bolts up and down my leg as I moved. But I kept on. The sun was westering. The Stellar’s jays were shouting back and forth to each other in the trees, settling down for the night. I wanted to finish the job I’d set out to do.

And I did. When I finished, the back and front of the house looked great. The leaves were raked and in the yard-waste can. But oh, was I gimping. Along with the rheuma, muscles all over my body had abruptly started griping about the unaccustomed exercise I’d put them through at Curves the previous morning. Shuffling my feet now, I put the brooms, rake and pitchfork away, rolled the yard cart out of the way but handy for the next job, and went inside. Took a long, long hot shower. Climbed into my jammies, robe and slippers.

Son-to-be Matt grilled a tri-tip for dinner, so I didn’t have to cook. A good thing, too, because I was all done in. I ate a little, read for a while, then dragged my sorry self off to bed. Slept like the dead in spite of the aches.

And then I got up this morning, early, and went to Curves again for another workout. I think I’m just going to refer to Curves as “the gym” because somehow “Curves” sounds all wishy-washy and pinky-frilly-girly to me. Well, OK, it’s girly, but dang, it’s not wishy-washy. A half-hour on those exercise machines, running in place between each one, and believe me, you work up a sweat – particularly if you’re in the sad physical shape I am. I weigh a lot less than I did at this time last year, but wow, I’m flabby. I know if I’m patient, going to “the gym” three or four times a week will get rid of most of that.

I did the workout, in spite of hands that were yelling at me. In spite of sore muscles and a twingy, aggravated right knee. Despite my rheuma-sore feet. I did it, but when I got home and showered again this morning, that was it. In the midst of all that raking and pruning yesterday, I’d been entertaining the idea of cleaning up the other side of the house today.  Clearly, I was a bit over-ambitious. Because lemme tell you, I am just flattened today. I took a three-hour nap this afternoon. Three hours! And while I did make chicken soup for dinner tonight, I enlisted hubby to chop the vegetables for me. Fortunately, he likes to play with his chef’s knife. 

 I love days like yesterday, when I’m so full of energy I feel unstoppable, when the pain from the rheuma is only a whisper and therefore ignorable. Yes, I paid for working and playing so hard, but you know? It was absolutely worth it.

I’m hoping to get busy on the rest of the yard this weekend.

Cussing in cadence

hydraulic exercise equipmentI was up early this morning, heading for the local Curves gym. It was my first time there, and, I’m almost embarrassed to admit, my first time trying any sort of gym workout since I was in Germany. There I tried to take advantage of the Nautilus machines at the U.S. Army post gym, but the rheuma was just too severe at the time. There wasn’t a single machine I could use without causing myself excruciating pain. So I gave that up.

I didn’t feel too bad about it. I got a decent amount of exercise anyway — I walked just about everywhere. We had a wire-haired dachshund, Max, who needed his walkies every morning and every evening — and more often on weekends. Nothing like a dog for motivation, right? And rather than drive and fight for parking when I needed to go downtown, I’d ride the bus and then walk and walk, doing my shopping. On Saturday mornings, if the weather allowed, I’d walk the 10 or so blocks to the little store where I bought my coffee, trying to converse with the proprieter in my truly awful German while she put the coffee beans through the grinder for me. Lots of laughter resulted. I walked to a big, nearby park at least once a week, and then walked all over it, following the wide footpaths through the forested grounds. There was a large pond — almost a lake — with ducks, geese and a pair of grouchy, dangerous and beautiful swans. There was the rose garden. The little boathouse where you could buy a cup of strong, delicious coffee and a slice of cake. The towns and cities in Germany, and the other parts of Europe I visited, were made for walking, built before cars came along.

And I walked during and in spite of bad flares in my feet, ankles and knees. Man, it hurt. I limped and gimped. When I was in basic training for the Air Force, way back in 1979, they taught us to march as the instructor counted cadence. After a while (and I learned my right from my left), it was easy. There was a sublime rhythm to marching. To my surprise, I liked it.

When I was walking along the sidewalks and roads in Germany, walking Max or to a bus stop or to a shop I wanted to visit, I used that training to help myself keep on going in spite of the pain each time I stepped on the flared foot or put my weight on the flared knee.  “Hup-two-three-four, hup-two-three-four …” over and over I’d mutter the words to myself, setting up a pace, a rhythm. Sometimes (OK, frequently) I’d sprinkle cuss words into the cadence. Doing that helped me vent my anger and frustration at my body, which was doing its best to keep me from moving, to make me miserable.
 
Today, here at home, I can’t just take a walk. The roads are narrow and twisty. There are no shoulders, just steep drop offs or ditches. Most of the roads aren’t very busy — we’re in a small mountain town — which is nice, but the locals are used to them and tend to drive fast, flying around curves. For a walker, it’s a fright a minute. So if I want to walk, first I have to get into my car and drive several miles to a walking trail. Or I can drive down into town and walk Main Street.

It’s not the same. I miss walking around the German city I lived in for six years. I miss the sidewalks. I miss all the other walkers, of all shapes and ages, because there, everyone walked. Footpower worked well. Here, not so much.

But back to this morning. Curves. I learned how to use each of the hydraulic exercise machines. It’s early evening now and the only part of me that hurts are my hands. I was able to do all the exercises. I enjoyed it. And yes, I had to drive to get there, but I guess I should either just accept that or move to a big city, like San Francisco or maybe New York City. There’d be busses. Places to walk. Other walkers.

I’ll be working out at Curves three times a week. I want to keep my joints moving as much as I can, and I figure the exercise can’t hurt my continuing program of weight-loss. I’ll get stronger, lighter, more flexible. It will be very good for me. Very good for my mind and my mood. And on the days that I have flares, I’ll just skip the machines that irritate my flared joints.

Wish me luck. I’m determined. Counting cadence and cussing a mile a minute.

I have RA. Should I get a flu shot?

I’ve seen this question pop up all over the Internet these last several months. I’ve asked the question myself. But it was only today that I discovered, while perusing the weekly Centers for Disease Control (CDC) H1N1 Flu Update I get by email, that CDC now has instructions aimed specifically at those of us whose immune systems are suppressed by disease or medications, or both.

The answer? Yes. Absolutely get the H1N1 (swine) flu shot just as soon as it’s available through your rheumatologist or primary csymptoms_of_swine_flu_svgare physician. Get the normal, seasonal flu shot, too.You’re at a much higher risk for complications from either or both flu types.

However, do NOT get the type of vaccine that has the live virus in it. Only get the type with the dead virus. Be careful. Ask before you get jabbed. This is important, as your body might not be able to fight off the live virus and you could possibly get sick.

According to the CDC, “Medications that can weaken the immune system and increase the risk of influenza-related complications include corticosteroids, disease modifying anti-rheumatic drugs (DMARDs), and biological response modifiers.” Lots of us who fight the day-by-day battle with rheuma take these medications. They help us battle the disease but leave our bodies far more vulnerable to infections, both viral and bacterial.

“Although the exact type and severity of immune dysfunction that correlates with risk of influenza-associated complications has not been well defined, patients with more severe immunosuppression are predisposed to serious complications such as prolonged or increased severity of illness,” states the CDC on its website.

If you have any of the following rheumatological diseases:
•Rheumatoid arthritis (RA)
•Systemic lupus erythematosus (SLE)
•Psoriatic arthritis
•Anti-phospholipid syndrome
•Polymyalgia rheumatica
•Systemic sclerosis/scleroderma
•Spondyloarthropathies
•Sjögren’s syndrome
•Polymyositis/dermatomyositis
•Vasculitis (e.g., giant cell arteritis)
•Necrotising arteritis
•Sarcoidosis
•Polyarteritis nodosa
be sure to get both the seasonal and swine flu shots as soon as they’re available in your area.

H1N1 (swine) flu is widespread all over the United States now. Take precautionary measures to prevent yourself from catching or spreading the flu:

–Try to avoid contact with people who have the flu.
–Wash your hands frequently with soap and hot water, or with antibacterial gel.

Symptoms of the flu may include:
•fever *
•cough
•sore throat
•runny or stuffy nose
•body aches
•headache
•chills
•fatigue
•sometimes diarrhea and vomiting
*It’s important to note that not everyone with flu will have a fever.

If you develop flu-like symptoms:
•Contact your healthcare provider.
•Avoid contact with others. Seek medical care early. You should stay home and avoid travel, including not going to work or school, until at least 24 hours after your fever is gone except to get medical care or necessities. Your fever should be gone without using fever-reducing medications.
•If you leave the house to seek medical care, wear a facemask, if available and tolerable, and cover your coughs and sneezes with a tissue.
•Do not stop taking any medicine you take for your arthritis unless told to do so by your physician.
•Seek medical attention early. Treatment is available for persons with severe disease and those at high risk for complications. Persons with inflammatory rheumatic disease are considered high risk for complications from the flu; therefore, your health care provider may choose to prescribe antiviral medications for you if you get the flu.
•If you are exposed to someone who has flu, consult your health care provider.  They may prescribe medication to help prevent you from getting the flu or watch you closely to see if you develop flu symptoms.

Note: People with osteoarthritis are likely not at increased risk for influenza-related complications unless they also have another high risk condition such as asthma, diabetes, heart disease, or cancer.

For more information, visit the CDC website page specific to those with rheumatalogical diseases: http://www.cdc.gov/h1n1flu/arthritis_clinicians.htm

For more general information about the H1N1 flu, visit http://www.cdc.gov/h1n1flu/general_info.htm

Here’s hoping that all of us stay strong and healthy throughout the 2009/10 flu season.