Review: Your Life with Rheumatoid Arthritis

If you could help someone else through the shock and dread of an unexpected rheumatoid arthritis diagnosis and its aftermath, you’d try, wouldn’t you? I know I would. I only have to remember my own bewilderment 27 years ago when my doctor said “You have rheumatoid arthritis.” Looking back, I’d have given anything to talk to someone who had experience with this disease beyond a briefLene-Your Life with RA book cover rheumatology course in medical school.

Well, offering help for RA newbies is exactly what Lene Andersen has done with her book, “Your Life With Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.”

Except she’s done far more than “try.” The book Andersen wrote isn’t just for newcomers to the unpredictable world of rheumatoid arthritis. It’s an eye-opener for us old hands, too. And no surprise, really. Andersen shares a literal lifetime of first-hand experience on coping with RA. She knows of which she writes.

“Your Life With RA” is an amazingly thorough primer on this nefarious autoimmune disease. It doesn’t just skim the treetops of the subject, it gets down into the weeds, answering with frank directness the questions most of us who have this disease wish we’d asked back when we were first diagnosed. Like “What is RA?”

She explains, briefly, that RA is an autoimmune disease that causes inflammation in the joints. Right. I remember my poor doctor, a young Army internist, telling me that, and how I accepted it without question. Well, I was stunned speechless. Only very elderly people had arthritis! It wasn’t until much later that the obvious question came to me. What does “autoimmune” mean?

Andersen answers this question directly, too.

“When you have an autoimmune disease, it means that your immune system gets confused and attacks your body. Instead of protecting you, your immune system undermines your health.”

And she goes on to explain about how RA attacks the synovial tissues that surround the joints—and similar tissues that line certain organs—and other eye-opening details.

How I wish I’d had this book back in 1987. And how fortunate for the more recently diagnosed that “Your Life with RA” is available now! Looking RA up on the Internet isn’t hard by itself, but it can be hard to separate the carefully researched, credible information from the vast jungle of flashy webpages that shout their uninformed opinions and myths and hawk folk remedies and miracle cures for RA.

Andersen’s “Your Life with RA” is that credible, well-researched source of information.

She explains, with humor and in detail, about the various types of medications used to treat the disease, the side effects you should be aware of from mood swings to high blood pressure to weight-gain, and ways she’s found to help you cope should you find yourself facing any of them. She also covers the very rare but far more serious side effects that some RA meds cause in what she calls “the scary chapter.” It’s good information—and foretold is forewarned.

Finally, Andersen talks about the 300-pound gorilla in the room: pain.

For most of us, inexplicable pain is the first indication that something is going wrong. Mine was a couple of incredibly painful fingers that prevented me from hand-writing notes during a conference I attended in Frankfurt, Germany. I had no idea what I’d done to them. The next day they were just fine. A few weeks later, excruciating pain in my right foot pretty much ruined a getaway weekend with my husband. Silly goose, I chided myself, you know better than to go sightseeing on foot in new shoes! But the shoes hadn’t hurt my feet at all when I’d tried them on.

When the mystery pain temporarily disabled a shoulder (making getting ready for work more than a little difficult), then a knee, and then settled into both feet for the duration, I’d run out of possible explanations—and excuses. I finally went to the doctor. And he had a diagnosis of RA for me less than a week later.

Andersen addresses RA pain with a section in her book she calls the “Pain Management Toolbox.” In these pages she discusses the physical pain that we all have to deal with and offers a number of ways to cope with it, from taking painkillers to ice packs to meditation. She notes, as well, that pain can be more than physical:

 “One of the most important tools [for coping with pain] is your attitude … The experience of pain can be paralyzing and can fill you with fear. Putting pain in perspective is the beginning to finding your way out of that fear. Coming to understand that pain isn’t the worst thing that can happen—not living your life is—will help you more than you can imagine. Remember that, even if you have a lot of pain. Find some part of the day that belongs to you alone, that represents your life. It will help you fight back.”

So will Andersen’s book. It’s not the end, either. She’s busy writing Volume 2 of “Your Life with Rheumatoid Arthritis” right now.

“Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” is available as an e-book for Amazon Kindle, Kobo Readers, Barnes & Noble Nook, and Apple iBooks .

You can purchase the paperback from Createspace, Amazon, and Barnes and Noble.

Finally, you can learn more about Lene Andersen by reading my January interview with her here. And don’t forget to check out Andersen’s award-winning blog, The Seated View.

The expedition

I took my uncle to his physical therapy appointment yesterday. It rained on the way to pick him up, then on the way to the medical center, and it was still raining as I unloaded his lightweight transport chair from the trunk of my car. Not complaining, though–I love rain!

An aside: This chair is probably 10-15 pounds lighter than his regular wheelchair. He bought it out of concern for me, not wanting Drive-Travelite-Transport-Chair-tc005me to hurt my back trying to lift his regular chair into and out of the car. The new chair has small wheels, footrests, and handles on the back for pushing. It moves easily, but is harder to push overall because of the small wheels.

I unfolded the chair and brought it around to the passenger door so Uncle could get into it. And we were off, both of us exclaiming about the windy rain. To me, it felt delightfully cool, the chilly tingle of the raindrops on my face and hands exhilarating. To Uncle, however, the rain and wind quickly became too cold. You’d think I’d realize by now—caring for him and my mom, both of them octogenarians—that they get chilled easily, their skin paper-thin. If I’d been thinking, I’d have taken the time to search for a closer parking space.

But, too late. We were about two long blocks from the physical therapy building, at the other end of the medical center campus. I decided to head first for the main entrance, which wasn’t too far away. That way we could walk most of the distance through the dry, warm inner halls, at least.

And here’s where I experienced, first-hand, poorly planned disability accommodations. Although the space I’d parked in was one of a bank of nice, wide handicapped spots, each with extra room on either side for loading and unloading, there was no accessible sidewalk. I had to wheel Uncle along the side of the single-lane, one-way, rough-surfaced, asphalt street, with cars passing uncomfortably close to us. Unbelievably, the VA medical center had neglected to provide a safe, smooth walkway for disabled patients to travel on from patient parking to the facility. And I’d estimate that a quarter of the vets it serves are disabled.

Although Uncle was wearing a jacket, by the time we made it inside he was cold. And to my dismay, five minutes of pushing his transport chair had awakened my rheuma-dragon. He was now aggravated and gnawing on my knuckles with hot glee.

Still, pushing Uncle’s transport chair was easier on the smooth facility flooring. I gritted my teeth and kept on, knowing I could rest my insulted hands once he was at his appointment. As we reached the doors at the far end of the facility, I figured we were almost home free. Just one more brief walk through the rain and we’d be there.

barrier fencingI hadn’t taken into account the continuing construction work going on all over the campus. Our local VA medical center has, over the last year or so, added several new buildings, a covered parking garage, and covered outdoor parking (which was all full when we arrived!). And the work is still progressing. As we came out the far door of the main building, we discovered that the usual walkway was blocked off with barrier fencing, forcing us to go all the way around what was once a parking lot to the new physical therapy building. Our first try for the entrance was a dead-end sidewalk. We turned around and went back. (cue in wind and rain here.) To my further dismay (and Uncle’s), we discovered that the only way to gain entrance was to walk all the way around the building so we’d be approaching it from the opposite direction.

A simple opening in the barrier fencing would have made that long, long walk unnecessary.

By the time we finally made it into the building, Uncle and I were both wet—and he was shivering uncontrollably with cold. My hands were aching like you-know-what. I helped him take his jacket off and draped it, warmed by his body, over his legs to help warm him up. It worked. Uncle was remarkably mellow—even cheerful—about the whole debacle.

When we left the physical therapy building an hour later, the rain had stopped and the sun was out. I had to put my sunglasses on. (I love springtime…) We went back to the main building and stopped at the lab so Uncle  could have blood drawn for one of his upcoming appointments. And then we made it back to the car without any further trouble.

By the time I got home—smack-dab in the middle of rush-hour traffic—I was exhausted. My hands were stiff, painful claws at the ends of my arms. I won’t deny it. I took drugs.

Today I’m still pretty fracked. My hands are swollen and tender, but much better than last night. A nap is in order this afternoon. But there’s a part of me that’s proud of getting through yesterday’s challenge tired but still smiling. Life would be pretty dull without a little hassle now and then…

…right?

 

 

 

 

A welcome watering

Oh, my. It’s storming outside the window. Rain is pummeling the roof, spattering against the window-glass, driven by the wind. It’s hitting the ground so hard it’s bouncing back up three feet into the air, creating a waist-level mist. Tree branches drip and sway. RainEverything is moving in the storm, reveling in the much-needed water.

Later, I’m taking my uncle to his physical therapy appointment. For the first time in a year we’ll be driving in the rain, parking in the rain, being dampened as we trot into the building. Oh, how good this will feel!

And, unbelievably, my rheuma-dragon is quiet. My always-swollen knuckles are still swollen, but they’re not painful. A gift, this is. Just like the rain.

 

 

A Day in My Life (with Autoimmune Arthritis)

This post will be included in the International Foundation of Autoimmuneleonardohands.jpg Arthritis’s World Autoimmune Arthritis Day Blog Carnival.

I am so lucky.

A day in my life today (with rheumatoid arthritis) is, first and foremost, not as painful as a day in my life was when I was first diagnosed in 1987. Since then I’ve experienced years of truly awful pain, years when my RA seemed to go to sleep and I was blessed with the elusive “remission” we all dream of, and finally, the recent years, when the “dragon” woke up again.

Today, when I wake up in the morning, my body feels stiff, sore and sludgy. The knuckles of both hands are swollen, so I have to be careful not to drop my handful of RA meds when I take them. I pour myself coffee (one hand grasping the handle of the glass carafe, the other supporting it with a potholder) and gratefully, I settle into my armchair. I pick up my laptop computer, open it, and sip coffee while I read over the news of the day, enjoying the peace of the morning—and the fact that I don’t have to rush around anymore …

Not like the old days, when waking up meant stiffness and sludginess, just like now, but it also meant that standing up from bed gave me my first breathtakingly sharp, rude jolt of pain for the day. My RA attacked joints in my feet all day, almost every day. It made every step I took painful. Some days my joints swelled, and I’ve have to wear loose, slip-on shoes. And if I was lucky, that was all I’d have to deal with. If I was unlucky, another joint would be flaring as well: a knee, an ankle, a shoulder, the pointer-finger of my right hand…

Today, by the time I’ve been up for two hours the worst of the stiffness has gone. The Tramadol I took first thing has sent the pain in my hands to a back room in my brain (though they remain swollen and a bit clumsy). By 9 a.m. I’ve finished my coffee and had a little breakfast. I go back upstairs to take a shower and get dressed, and now I can walk up the stairs comfortably. Going to work is a breeze: as a professional freelance writer, my workplace is my desk upstairs.

What a difference! In the bad old days, there was no time to wait for my meds to work. (And since they consisted of NSAIDs alone, they didn’t work anyway.)I was into and out of the shower first thing. Dressing could be interesting; putting a shirt on over a flared shoulder or tugging my slacks up with flared fingers was an exercise in stoic determination. I tried to keep any moans and groans to myself, not wanting to worry my daughter. She was seven. Once I was dressed, I’d wake her up, get her dressed, comb her hair… all those things moms do on school-day mornings. I’d get us some breakfast and pack her lunchbox. Some days that was easier than others. Somewhere in the middle of all that, my husband took off for work …

Today the knuckle at the base of that same index finger is fairly painful—it’s just annoying, though. It won’t slow me down much. At my desk, as I wait for my laptop to boot, I put both hands through a series of exercises, warming them up, getting the joints moving more smoothly. That one knuckle is going to be aggravating.  I take a deep breath, accept it as it is, and get to work.

Back in the late 80s, getting to work meant driving my little stick-shift car. Work wasn’t far away, but driving could be an agonizing—and dangerous!—undertaking when my left knee, or my big toe on my left foot, or any joint in my right hand flared. Some days instead of risking my life or the lives of my fellow drivers, I’d take the city bus instead. But that meant walking several blocks to the bus stop, and then standing there for 10-15 minutes waiting for the bus. Walking and standing were dreadfully painful every day. It felt like I was walking on gravel. And once on the bus, which was always crowded, I’d usually have to stand, hanging on to a hand-strap. By the time I got to work, I couldn’t wait to get to my desk so I could take my weight off my throbbing feet.

Today, my days are pretty darned good in comparison. My feet hurt sometimes, but never as bad as they used to. I generally don’t have flares in any of my larger joints anymore, either. Because my hands are swollen, a bit stiff, and sometimes painful, I can never really forget that I have RA during the day. It’s not like breathing, which we mainly do without even thinking about it. But I’ve got to say right here that I realize how lucky I am. I realize how fast things could change for the worse.

It could happen overnight. Just like the onset did. Just like the remission, when it came in the mid-90s. And just like the way my RA returned after a six-year nap. Like Jack Nicholson in The Shining, there it was, wielding its wicked knife to thrust into my joints. I’m b-a-a-a-a-k!

By tonight’s early evening my hands are a little more swollen. They’ve become more painful, too. The Tramadol isn’t working so well anymore. But usually by then my work is done for the day. No more typing. I can relax, dip my hands in the paraffin bath or microwave my lavender-scented gloves and slip my hands into their soothing, moist warmth. When I go to bed, if I’m lucky—and I usually am—I’ll be able to drift off to sleep without too much trouble.

I try not to remember those miserable, countless nights in the old days. I was often in so much pain there was no way I could sleep. I can remember nights when I stood crying at the bedroom door because it hurt too much to open it. Nights spent sitting on the sofa, rocking, trying to concentrate on the book in my lap instead of the monstrous pain. And other nights spent floating gently in a narcotic fog, aware of the pain that lived in it, somewhere, but thankfully locked up for a few hours.

They’re behind me, those times. And if my luck holds, that’s where they’ll stay.

Drama queen

“If aches and pains are like a light summer rain, arthritis is like a storm, and rheumatoid arthritis is like a hurricane.
–from “Conquering Rheumatoid Arthritis”
by William Bensen, Wynn Bensen, and Martin H. Atkinson

What an elegant description!

Now, maybe this sentence didn’t stun you like it did me when I read it for the first time last night. I just sat there, breath caught, and contemplated it for a while. It’s … it’s … it’s … a perfectly elegant analogy for a rheumatoidhurricane-RA arthritis flare.

For me, RA is the physical equivalent of monster-size clouds and gale-force winds; of slashing, drenching, merciless sideways rain that just goes on and on and on until …

suddenly, it’s gone. And the sun comes out.

And you’re left with the ruins.

When I look at my hands, I see hillocks between my knucklebones where valleys should be. The small, tough muscles feel turgid and feverish, and my skin, which has always been a perfect fit, has somehow shrunk a size. And yet, someone other than me looking at my hands probably wouldn’t see anything “off.” They’d just think I was, maybe, a bit of a hypochondriac. A drama queen.

The damned hurricane is invisible, too.

Busy hands are happy hands. And achy hands ….

WritingMickey

I just realized that February is almost over. Tomorrow is it. Buh-bye, February 2014.

I’ve been so busy, so full of things to do that it barely registered. And I gotta say here: I’m glad. I’ve finally put unemployment behind me—I’m freelance writing and bringing in about the same income that I did right before I was laid off.

I should probably qualify that a little. It is freelance work, which means it could dry up anytime. But I don’t think it will, at least, not right away. And in the meantime I’m racking up experience and a useable portfolio for the day it does dry up.

February. Gone. Amazing. Did I mention how pleased I am? How good it feels to be paid for work well done? And to be so lucky and blessed to be working at what I love. Incredible.

Okay, back to Earth. My poor hands are not so good. Swollen, achy, some days worse than others. The medication change and addition of an NSAID don’t seem to be having much affect, but as we all know, when you’re dealing with RA meds, changes take time.

In the meantime, I’m using my paraffin bath and my cinnamon-scented, microwave-heatable mitts and squeezing a squashy exercise ball in spare moments. Oh, and typing all day. ;)

The next time I post here at RheumaBlog, I’ll be doing so from my new laptop, which I am able to afford because of that stuff I wrote about above. I’m very relieved, because this old one (seven years last month) presented me with a Blue Screen of Death last week. Fortunately, it seems it was only kidding, since here I am. But my previous experience with the B.S. of D. (when the laptop before this one went belly-up) tells me the first B.S. of D. is a warning. The second one is Real.

I should have my new laptop by the middle of next week.

Here’s hoping that everyone is feeling decent and in good spirits. The seasons are changing, whether we want to believe it or not. The Endless Winter is going to end. (Like the Endless Summer here in California, at least for a few days. It’s raining! And it’s supposed to keep raining into early next week! Water from the sky! Whoopeee!!)

My best wishes to all.

Bad toebelly

What is this nausea in my big toe?

On my left foot. Right

Now. How dare that toe mimic

The sickness of my hands?

This toe-nausea burps memories

All buried in the far deepest

this turtle looks like how my toe feels.

this turtle looks like how my toe feels.

pit of my mind. I’ve

dreamt-begged the source

To never never return never.

But now I have this big toe that

longs to puke. I move it, slow

With my breath held but it

Rewards me with pulsing throbs

And I cannot believe it.

I cannot.

Ahem.

I visited my rheumatologist last Saturday morning. My blood tests finally match how I feel, with a wildly elevated sed rate and CRP levels. Seems stupid to feel so triumphant, but I can’t help it because now there’s proof the pain’s not all in my head.

So much for that remission I already knew I wasn’t “in.”

My doc, a bit subdued, is increasing my Plaquenil dosage. It’s the only one of the three DMARDs  I take every day that isn’t already maxed out. And I’m to start taking Lodine, an NSAID I’ve not tried before, as soon as it arrives in the mail.

Then I wait three months. Or maybe six, if I’m feeling exceptionally patient and brave in the face of growing pain and danger of disability. And then, if I still have belly-aches in my hands (and toes … sigh), we’re loading for bear. I’ll start shooting up Humira.

I’m shaking the threat of it at my grubby old dragon like a shaman’s rattle, hoping to scare him back into his pit again.

Shaking … from the threat of it, too.

Please forgive the bad poetry. Sometimes the ol’ mood demands it and I just have to give in.