I’m up late tonight. I watched the great old movie, “Guess Who’s Coming to Dinner?” until well after midnight, and because going to bed means trying to Sleep While Tossing, I’ve stayed up, waiting for another dose of Tramadol and Tylenol to kick in.

So it’s very quiet. The TV is off. The only sounds are the quiet click of my laptop’s keyboard, the occasional car passing on the nearby road, and my elderly cat-friend’s snore as he snoozes, curled up against my hip. Oh, and one other sound: the strange, melodic chirp and trill of a bird as it sings outside.

“Strange” because it’s so unusual to hear birdsong in the wee hours of the night. So I listen, charmed, with a half smile on my lips, remembering the last time I heard a bird singing in the dark.

It was about 20 years ago. It was unusual then, too—unusual enough that it became a cherished memory. Early in the early spring and late fall mornings, before the sun rose, I’d be up, taking a hot shower as I got ready for work. I’d open the window in spite of the cold to let the steam out. And it was then that I’d hear him, a blackbird singing an intricate, liquid melody so lilting and fine that I’d have to stand still and just listen for a while, enchanted and knowing that I was hearing something extraordinary, something I might never hear again.

Remembering evokes the sharp sting of cold air invading my steamed-up bathroom and the invigorating scent of the nearby sea it carried on it. Remembering brings me fog horns lowing in the harbor, and the clack-clackety of the train on the elevated tracks a few blocks away from my flat as it slowed, approaching the downtown station, and of that train’s long, lonely whistle. It’s a sound that has always meant “Come, let’s go, let’s go see other places and other people. Let’s find an adventure,” to me, and makes me long to do just that. Remembering the nightsong of that small, unseen blackbird makes me smile again, just as it did every time I heard it, just as enchanting now, tonight, as it was two decades ago.

I’ll go to bed now. The mysterious singer has gone quiet in the here and now, but he left me with a gift: a lovely memory of that earlier singer and that earlier time in my life.

Of trains and the excitement of traveling into the unknown for the sheer joy of it.

Well, this is it. The day I’ve been waiting for. Today I’m finally getting a physical therapy session that will address my hip bursitis.

I have only a smidge of hope left for this. Two sets of corticosteroid injections—seemingly the miracle cure for bursitis—have failed. (I’m sure in my records it says that I failed the injections, rather than the other way around. Grrr.) My previous experience with PT, for RA, consisted of a very nice therapist giving me instruction sheets for some general strengthening/flexibility exercises. I expect there will be more of those today, pinpointed for my hips and the specifics of trochanteric bursitis. Will she do more? Ultrasound? Massage? Ice packs? Hands-on, therapist-directed, real-time exercise in the clinic? I don’t know, but I really, really hope so.

My bursitis has gotten much worse during the last two weeks. It’s always been a low-level, constant, aggravating and draining sort of ache in my hips, but now it’s as if the volume has been turned up suddenly, a blaring, achy-sharp pain that stretches from my hips into my seat and down to my knees. The racket has awakened the rheuma dragon, too. To my dismay, he’s stretching his claws and idly gnawing on my knees, my shoulders and my finger-joints.

Whine? Me? Well, yeah. Right now I’m whining. But don’t worry. I’ll have myself back under control soon. The Blues don’t stick. I’m a born glass-half-full type, and even as I gripe and indulge in a little self-pity, I remind myself that this all could be much worse. I may be hurting right now, but I’m still mobile. I am comfortably warm, dry, well-fed and loved. I have painkillers that help damp the ache a bit, and I’m taking RA drugs that are, I must assume, keeping the dragon from going on a real, seriously disabling rampage.

And outside the windows, the signs of the upcoming Spring are everywhere. The almond trees are covered with white blossoms; the Japanese plums and ornamental cherry trees with ethereal pink. The squirrels are awake and scampering up and down the trees, busy as can be. I heard a robin the other day just singing his little heart out. And here at Mom’s house in the low foothills, we’ve had a nice mix of rain and sunshine during the last couple of weeks, even as many feet of snow has fallen high in the mountains. At my house up in Camino, Mr Wren reports we had two feet of it. So It seems California’s drought has ended—at least for this year. That’s really something to be thankful for.

My Mom continues to recover. It’s slow—it takes time to come back after being down for so long—but her spirits are mostly good. She’s eating much better. I made her a loaf of whole-grain banana bread on a whim (we had some overripe bananas that were about to get tossed) and, to my surprise and delight, she loves it. She’s been knoshing on banana bread several times a day. Although she does still wake in the morning with sciatic pain, one tablet of painkiller knocks it back, and she needs no more of it until the next morning. She’s getting well. And, in one of those whimsical turnabouts life tosses at us, while I fight this newest battle she’s helping me to take care of ME.

While I’m at the hospital today I’ll also be getting a blood test done, and I’m going to see if I can get an earlier appointment with the pain doc for more steroid shots (why not? Maybe a third try will be the charm) and an earlier appointment with my rheumatologist. I’m not scheduled to see him until May, but with the RA suddenly worsening, I really don’t want to wait that long.

Wish me luck.

Later: Arghhh! I should have known! Just got a call from the PT clinic. My therapist called in sick this morning. They had to reschedule my appointment. Fortunately, they were able to fit me in on Friday this week. The bright side? This time, the appointment is only days away, not several weeks. A good thing, or I might have just shot myself.

Sigh.

“Hi, Dr. Lim,

“I’ve had RA for 23 years, but it has only been during the last three years or so that I’ve really learned about this disease, thanks to Internet medical websites and patient/doctor bloggers. When I was first diagnosed, there was very little info about RA available to patients. My doctor at the time, an internist, explained the basics to me, but of course, the basics really aren’t enough. I spent many, many years deeply frustrated by having to take medicines with unpleasant and sometimes dangerous side-effects, only to discover that, one by one, they didn’t relieve my pain nor cure my disease.

“Today, I understand a lot more about RA and the drugs used to treat it. I know and accept that RA is a uniquely individual disease; not only do the symptoms and intensity of the disease vary from person to person, but how each person’s body reacts to the different drugs varies as well. I understand, now, my own frustration and anger (and have forgiven myself for it). And I also understand how frustrated my poor internal medicine doc must have been when his compassionate attempts to treat me failed time and time again.

“Today, with the help of a good rheumatologist, a combination of drugs and a much better education about the disease itself, my RA is under fair control.

“I guess what I’m saying here is thank you. I’m simply delighted that good doctors like yourself are doing all they can to educate not only their patients about their illnesses, but also pass that vital information on to the world at large. It’s SO important for patients to understand all they can about the diseases they battle, particularly diseases like RA: mysterious, terribly painful, potentially disabling, sometimes deadly and so far, incurable. Thank you for taking the time to post about your specialty and the diseases you treat. Your dedication, care and compassion for those of us who cope with these diseases is greatly appreciated. I’m looking forward to reading more of your posts in the future. Knowledge translates to hope and empowers us all.”

I wrote the above as a comment to a post written by Dr. Irwin Lim, an Australian

Dr. Irwin Lim

rheumatologist, a few weeks ago. Dr. Lim recently took up blogging. He writes that he was encouraged by his business manager to start a blog as a marketing tool, something that seemed vaguely mercenary to him. For a long time, he resisted.

And then, this:

“A few more weeks passed. During this time, I experienced a strange run of patients developing unpredictable, serious side effects to medications I commonly use to treat their pain and to prevent their joint destruction. In all cases, the patients attended hospital and there were aspects to their treatment that suggested a lack of understanding about their underlying disease states and the medications they were using. And this lack of understanding occurred on the part of the staff treating them, and to an extent, the patient’s family members.  I had previously thought that I was good at communicating and educating my patients. I need to do better. I accept that I have a responsibility to educate the people around them, both medical and social. One way of doing this is through this blog.

“I hope to share with you my thoughts on musculoskeletal disease, healthcare in general, and our Connected Care philosophy. While I know that I am opinionated, I hope that I can interest you and maybe, even educate you in some way. Who knows, I may even be able to use social media to actually help someone. ”

Well, yes.

Dr. Lim is not only a good doctor, he’s a good writer. His posts are chock full of useful, insightful information. Still, I hesitated to add his blog to my blog roll because its main purpose is to market his medical group. Nothing wrong with that, of course, but by adding his blog, I felt I’d be perceived as advocating his medical practice. Since I live on the other side of the world from Dr. Lim and am not one of his patients, such advocacy seems both unwise and untoward.

It was a real conundrum. Today, I visited Dr. Lim’s blog again, and found even more useful information about a variety of subjects, including sciatica (his wife has been battling it), osteoporosis, RA and several posts by his colleagues about physical therapy.  Impressive. All of the posts are thoughtful and well-written. It’s info that people like me, who cope with rheumatoid arthritis and other autoimmune and musculoskeletal diseases, can use to better understand and manage their condition.

While I in no way advocate Dr. Lim’s business, I surely do advocate his knowledge and ability to put it into layman’s terms in his excellent blog posts. Such good information should be shared, and to that end I’ve added BJC Health: Connected Care, to my blog roll. I encourage you to visit Dr. Lim’s blog and hope you’ll find it as inviting and informative as I have.

P.S.: I’d like to extend a heartfelt thank you to all of you for your compassionate thoughts and comments regarding my Mom as she battled sciatica and, later, that serious and debilitating nausea. The good vibes you sent our way helped me keep my own spirits up. Mom is doing very much better with each passing day. She feels good, her pain level is nearly nil and, to my astonished delight, she’s eating with real gusto and enjoyment. The change in her is night-and-day. What a huge relief!

And thank you, too, for your constant encouragement regarding my hip bursitis. There’s not much to say about that at the moment, except that it continues, it hurts and I look forward to physical therapy soon in the hope that it will provide some relief.

Have a lovely, peaceful Sunday, friends. Walk in beauty.

Good news!

Mom is recovering. It’s been a long slog, but because of a compassionate gastroenterologist and a caring pain doctor, she’s doing much, much better.

The tummy doc (sorry, but my term for “gastroenterologist” is not only easier to type, but I think it’s much more appealing) gave up a morning of his day off in order to discover why Mom was so dreadfully nauseated. She couldn’t eat. She couldn’t even comfortably drink water.  Desperately worried and frustrated because the stomach med he’d given her was having no effect, and because the soonest the doc could do the upper GI endoscopy was a month away, I called his office and left him a message that said, “If you don’t do this now, there won’t be anything left of her to scope!” I used those very words. Mom was losing weight fast. She was so weak she could barely walk. She was disoriented and confused. She couldn’t remember from moment to moment what was wrong with her or why, only that she felt awful.

She was slowly starving to death before my eyes.

That good doctor responded to my concern by arranging for the procedure the very next day (last Friday). Fortunately, he discovered no terrible diseases. What he did find was a stomach that was producing way too much acid, and places near her esophagus and in the lining of the stomach where the acid had caused injury. He took some tissue samples for biopsy, just in case, but his diagnosis was a severely acidic tummy. He also said that the narcotic pain killer she’s been taking for the last month and a half was causing further upset in there, even though she was now taking very little of it.

His solution? A new form of strong acid-reducing medication, taken in the morning. Her recovery began the following day, as the nausea lessened and she was able to eat. She even got hungry. And now, a week later, it seems like she’s hungry all the time! She can only eat a little at a time, but she eats frequently. The change in her general health, both physical and mental, is profound.

Stomach acid. How amazing that too much of it could bring an elderly woman to the brink of starvation. And that once neutralized, her recovery could take place so quickly.

It’s a huge relief, believe me.

The sciatica, while greatly improved, was still causing her some pain. At rest it was bearable, generally no more than a dull ache. But if Mom tried to walk around for more than a couple of minutes, it would wake up and shoot pain down her right leg. She’d have to stop. Combined with the lack of water and nutrition, it was still serious. And though she didn’t take more than a tablet or two a day, she still needed the narcotic pain med.

She saw the pain doc again a few days ago. He gave her another steroid injection. She was quite sore afterward, but by the end of the following day, she felt great. Yesterday, she wanted to go out and buy some new jeans—her old ones had gotten way too big. So off we went.

She shopped for a full hour and a half before tiring. Got her new jeans. And then, hungry as a horse, directed me to Panda Express for Chinese take-home. When we got home, she ate well. She had very little sciatic pain—certainly not enough to cut her shopping short. And through it all she was mentally sharp, oriented, and totally enjoying herself.

I cannot tell you how relieved I am.

As for me? The last steroid injections a month or so ago failed again. I’m still waiting for my physical therapy appointment, during which I hope to learn exercises that might relieve the bursitis pain in my hips. That appointment was originally scheduled for last Friday, but I had to cancel it so I could get Mom to the tummy doc—far more important, at the time.

So, I have a new appointment coming up on March 7. My hips still ache constantly, but the intensity of the pain varies. Sometimes they hurt a lot, sometimes only a little. And so far, they haven’t affected my ability to move or walk. I count my blessings.

I’ve had the occasional rheuma pain in my right hip as well, though that seems to be transient. And of course, my hands are always stiff and achy. Tramadol helps though, taking the sharp edge off the pain in both my hands and my hips.

We’re having a lovely rainstorm here in Northern California today. Twenty-five miles up the mountain at my house in Camino, it’s snowing. They got about two feet of new snow up there about a week ago, and the forecast now is for about the same amount between now and tomorrow afternoon. I’ve talked with Mr. Wren, with my daughter Cary and her fiancé, Matt. They’re all doing just fine. The woodstove is blazing, they’re nice and warm, and they’re stocked up for the weekend. Shadow and Finny are having a ball playing in the snow.

I miss seeing them, and I miss the snow, but I have to admit I don’t miss having to shovel paths through it so I can carry in firewood. I’m pretty spoiled down here in the low foothills with Mom—we have central heat, no need for a wood stove and nothing more serious than a little wind and rain.

I think we can handle it.

We’ve begun that age-old dance, my mother and I. It’s the one that most parents and their adult children do, eventually; the one during which we exchange our lifetime roles. As we dance, my mother becomes the child and I become the parent.

It’s difficult. Mom and I are equally reluctant to do the dance. It’s painful. Infinitely tender. We’re unsure of the steps; we find ourselves awkward in our sudden intimacy; shy with love, two women who share ancestral blood and the complex history of mothers and daughters. There’s no way of knowing how long the dance will last. It could be a marathon. It could be very short. Whichever happens, we’re both in it for the duration. We’ll see its end together.

The sciatica Mom’s suffered with for the last three months is nearly gone. We’re celebrating its slow departure, delighted that she now has so little pain. But in its place has come a low, evil brown nausea.  It’s stealing her appetite, her enjoyment of life, and burdening her with frustration… and fear.

In the morning she’s having an upper GI endoscopy. We hope to discover what’s causing this dreadful, debilitating nausea. Mom has lost nearly 12 pounds, most of them in the last three weeks. She can barely eat or even drink water; I took her to the ER a week ago because she became so dehydrated. They gave her IV fluids and sent us home.

The lack of food and water has not only left Mom alarmingly weak, it’s also affected her ability to think clearly. She’s confused and forgetful. She cannot understand why she’s so sick. She cries, and I try not to. To stay strong.

Tonight, a few hours after going to bed, she got up to use the bathroom and fell, scraping and bruising her back. I helped her up and back to bed, cleaned the ugly scrape and painted it with antibacterial salve. Mom said that no other part of her seemed to hurt, but of course I’m worried about her ultra-fragile bones, or that she might have irritated her sciatic nerve again. She was able to walk back to bed unaided, though, which I think is a good sign. I think—I hope—she’s all right.

That fall scared the dickens out of both of us.

I hope the gastroenterologist will be able find out what’s causing her awful nausea. I hope he can treat it quickly and effectively, so she can get on with recovering her strength and stamina. And I hope that we’ll be allowed to stop dancing, at least for a little while.

There is no breakfast more utterly delicious in the world than warm Quiche Lorraine. The perfectly baked, flaky-golden, buttery crust and the egg, Swiss cheese, bits of savory bacon and sweet diced onion filling are, simply, sublime.

Sip a glass of dry, bubbly Champagne with it and you might reach nirvana.

That’s in my own humble opinion, of course. I respect that you may not agree with me. In fact, your favorite breakfast in the world might be a crock full of hot oatmeal with butter, brown sugar, cinnamon,  and a splash of cream. Or cold pizza. I can respect that, since I’ve indulged in both, but I don’t think the Champagne would pair up well with either of them.

So, what is all this French breakfast pie praise about?

Well, it’s what I just ate to break my fast, along with a sweet, juicy tangerine. No Champagne, but you can’t have everything. It was leftover quiche from yesterday’s restaurant breakfast, the one Mom and I had following my bursitis injections, a sort of hopeful pre-celebration of their success. That Quiche Lorraine was delicious yesterday, but I have to say it was even better today.

I wish my hips were, too, but so far they’re not. I remain in more pain now than before I saw the doctor. Still, enjoying that lovely breakfast two days in a row put me in a sweet mood this morning. I remain hopeful. Hard not to be, really: outside, it’s sunny and cool. The air is almost crystalline. It’s enough to make me feel almost guilty as I read about the sub-zero temperatures, snow and ice much of the rest of the country is suffering through. But this is California. This seriously mild winter weather is why most people decide to settle here.

I don’t really have anything else to write about, today. Just quiche, sunshine and hope. I wish you all the same.

Hi All…

I’m headed out in a few minutes for my appointment with the physiatrist for a second round of steroid injections for my tronchanteric bursitis. Nervous but determined. Wish me luck?

Also… decided over the weekend to once again give the blog a new look. I like it. Artsy, isn’t it? 🙂

Later…

I’m home. To my considerable relief, the injections were painless, done quickly and without fanfare or dramatics by my young, hyper-fit and very serious new physiatric doctor.  (He looks like he could easily pick me up with one hand while dribbling a basketball with the other.) Unfortunately, at the moment my hips are about 30 percent more sore than they were before the shots, but he warned me that might happen. It’s not unusual, he said, though quick relief is more common. He also told me (as did my rheumatologist when he injected me a couple of months ago) that if the steroids work, I should get relief from the pain in between 24 hours and a week. If the injections don’t work … well. No change.

Believe me, my fingers, toes and even eyes are crossed in the hopes that they’ll work.

But he’s not leaving my fate up to just steroid injections. He’s also setting me up for a couple of sessions of physical therapy, where I’ll learn gentle exercises that will stretch the long ligaments that lie over the bursae in both my hips. Dr Fit-n-Trim said that right now, those ligaments are shortened and very tight, which keeps the bursae constanty aggravated, inflamed and painful. Stretching them will relieve that pressure and, over time, allow the bursae to heal and go back to their normal state. And with luck, stretching the ligaments will also prevent a recurrence of the bursitis.

I’m all for that.

Other positive news: After the injections, Mom and I went out to breakfast. She was hungry! And not hurting very much! And after we ate, she wanted to go to Target and wander around a bit. She also got to talking about different recipe choices using the fresh salmon fillet I picked up at the grocery store the other day.

My friends, this is huge. Planning a meal ahead means she believes she has a future!

It’s the first time in two months that Mom has cared, even a little, about what she eats for supper or how it’s prepared. She’s still taking pain meds, but she’s getting stronger each day, and the pain has declined enough that she can think with hope about other things. I’m pretty sure that, given another two weeks of pain relief, more nutrition and a gentle, slow gain in strength, she’ll be just fine.

And I can go home.

I’ve finally some good news in regards to my mother’s health!

The steroid injection for her sciatica finally started working on Tuesday last week, dropping her pain level by about half. All of you, as people who cope with chronic pain, know what a huge relief it is when the pain level decreases, even when it doesn’t disappear entirely.

For my Mom, it’s been wonderful. She’s able to get up and about much more easily, and mostly does so without the hated walker. Her appetite has improved. Since the narcotic pain relievers are to be taken on an “as needed” basis, she’s been able to get by on three-four tablets a day (as opposed to six), lengthening the time between doses, and has also been able to decrease the neurontin dose to twice a day, rather than three times.

As a result, she’s been much more interested in the world. On Thursday, I took her to her hairdresser and she had her hair highlighted and cut — and I got a haircut, too. We went out to lunch afterward. And yesterday, after having a shower, she dressed herself in her nice clothes, put on makeup and even wore one of her pretty necklaces. I think I mentioned that she’s always very put together, always color-coordinated and neat. It’s wonderful to see her getting back to normal.

And I got a bit of a surprise. I’d let my hair grow quite long–it was about two inches below my shoulders. I liked it, but was getting a bit tired of washing and drying all that hair, and, unless I wanted to spend a lot of time with curling irons and the like, my style options were limited. I could wear it loose (which irritated me, as it was always getting in my face or strands caught in my mouth), or clipped up in a twist, or in a ponytail.

So I decided to go ahead and get it cut again. And the surprise? My hair has become quite wavy and curly! With it long and heavy, the waves were there but not all that noticeable. But cut shorter–wow. I’ve had dead-straight hair all my life, so this is something of a novelty for me. And the only thing I can think of that might cause such a change are the RA meds. It’s been a long time since I tried methotrexate, but I’ve been on Arava now for about two years. Both cause some hair loss, and while I’m not losing any right now, I did for months. Might the chemicals in the Arava have changed my hair folicles? Hmmm. Well, if they did, I’m not complaining. I like my new hair!

It’s also much darker than it used to be. I’m a natural blonde who’s resorted to blonde highlights over the last few years to brighten my natural color up. The remainder of the highlights were trimmed off the other day, so my hair probably appears a bit darker because of that. But it’s not, I think, just the missing highlights. Overall, my hair has darkened by several shades. Interesting.

I’m so relieved to have good news regarding my Mom. Next week she’ll see the pain doctor for a follow-up, and I’m pretty sure he’ll give her a second steroid injection, since the pain hasn’t gone completely and is still pretty debilitating. My hope is that the second injection will take it all away, so that the only task we’ll still be facing is building her overall strength back up. She still gets alarmingly exhausted when she’s up and moving around, though there’s some improvement in that, too, since the pain levels have dropped.

Overall, things are really looking up. I’m pleased.

GUILT.

You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?

I’ve had rheumatoid arthritis for about 23 years. The only time I haven’t felt guilty about my disease was the six-year period when it went into remission and I didn’t experience any symptoms. No pain, no disability, no inexplicable fatigue. No guilt. But the other 17 years, when the disease was active, I did, and still sometimes do.

Why do I feel guilty over a disease I didn’t ask for, did nothing to bring on myself, and certainly didn’t—and don’t—want? Here’s the truth. I’m not guilty about the RA itself. It’s just something I have, like blue eyes, a great imagination, and the occasional ocular migraine (one of which I’m having as I write this). Why should I feel guilty about things like that?

But I do when my disease affects others: my family, my friends and my co-workers.

Like almost all Western women born in the second half of the 20^th Century, I was raised to be pleasant, helpful, gentle, kind, honest, generous, unassuming and responsible. As a girl who reached adolescence and womanhood in the Sixties and Seventies, my culture also exposed me to feminism, which made me strive to be strong, proud, independent, hard-working and self-sufficient. I was determined to be all of those things, and until I was 31 years old, that’s exactly what I was.

I am Woman, hear me roar!

Then I got rheumatoid arthritis. Suddenly, while I could still be almost all the things I was raised to be (pleasant, helpful, kind, yadda yadda), I couldn’t always live up to what my culture expected of me. It’s tough to be proud while limping heavily on a severely flared foot. Hard to be independent when you have to ask for help getting dressed because of pain and disability. Sometimes, instead of being hard-working, I had to take unscheduled days off work, or ask others to help me with it. Self-sufficiency became increasingly difficult. Sometimes it seemed like a pipe-dream.

While my RA didn’t disable me continuously—only, say, four days out of seven each week—my reaction to it was guilt. Guilt because the nature of the disease meant that the pain and disability shifted. Sometimes it would attack one hand, sometimes the other. It might be my right knee one day, my left shoulder the next. I might start my day leaning heavily on a cane because of a swollen, incredibly painful great toe, only to end that same day running lightly up the four-story stairwell to my flat, easy as pie when the flare eased, as quickly as it had come on. I felt guilty because my illness changed so frequently, it embarrassed me. It made me feel that others must think I was malingering or attention-seeking. That I was weak. A wuss and a whiner.

I know now, of course, that they probably weren’t. Never once did any of my colleagues or professional acquaintances ever imply such a thing. They were all kind and amazingly understanding.

At home, my family was also mostly understanding. I say “mostly,” because I know that the mercurial nature of the disease frustrated my husband and bewildered my parents. I felt guilty asking him for help with silly things, like cutting up vegetables, opening jars and helping me fasten my bra in the morning. It made me feel weak and sometimes, pretty damned useless. I felt guilty because I couldn’t participate as much as I wanted to in my daughter’s playtimes, or help her practice her soccer kicks and moves. I felt guilty when my husband and I traveled and went sightseeing and I couldn’t walk quickly, or had to stop and rest, or go back to the hotel sooner than we’d planned. And when I got angry having to handle housework like laundry on my own when I was hurting and disabled, I felt guilty for getting angry. After all, my husband was being as helpful and understanding as he could.

To counteract that guilt I pushed myself hard to keep doing everything I needed and wanted to do in spite of the pain, in spite of sometimes being seriously disabled and often exhausted because of it. Looking back, I know I pushed myself too hard. I expected too much of myself, trying to keep up the appearance of normalcy. I cannot tell you the number of times I gritted my teeth while keeping a smile on my face as I shook peoples’ hands, my own hands hurting so badly that even a light touch could increase the pain from awful to excruciating. But shaking hands was a traditional way of greeting others in Germany; people shook hands all the time. To avoid it would be taken as a serious breach of manners. But to explain why I didn’t want to shake hands was embarrassing and often, difficult. My mastery of the language was less than perfect. Okay, it was abysmal. So I shook hands with people, screamed with agony inside, and then felt guilty for wishing I could somehow avoid it.

I also felt guilty when I couldn’t do things I’d arranged to do with friends and family because of RA. I hated having to cancel outings and engagements at the last moment, something that anyone with RA is often forced to do. Once again, though, I was lucky. I was blessed with friends and colleagues who gave me lots of leeway and understanding, and a family who did, too. Plus, I only canceled when I really had to.

Well. That’s a whole lot of guilt for one small woman, isn’t it?

Today, with many, many more years of dealing with RA on a daily basis under my belt, I no longer feel so guilty when it affects my interactions with others. Telling them about my RA doesn’t embarrass me anymore. I don’t mind explaining what the disease is and what it does to me, and if they don’t want to listen, I’ve learned that it’s their problem, not mine. I don’t mind.

These days I don’t feel silly if I have to use a cane, or wear compression gloves, or splints. Instead, I’ve learned to give myself a break. I give myself the same understanding that I hope to receive from others. And I acknowledge everything that I can do in spite of RA, because there’s an awful lot. I go out of my way to give myself pats on the back for doing the best I can—and for recognizing my limits. I admit to being human. I admit that I’m not always the strongest, most independent, most self-sufficient woman in the room, my town, the state or my nation.

To counteract any guilt that worms its way in—and it does, because I’m only human—I just do my best to live my life fully. I do everything I can to treat my disease and minimize the symptoms. I use all the tools I have available to help me live well. If that means strong medications, painkilling narcotic analgesics and canes, crutches, and the like, then I use them. If it means using a special knife to cut vegetables and levers instead of knobs on my doors, fine.

And what about those other qualities, the ones that my parents raised me to have? The kindness, the helpfulness, the gentleness and generosity, the courage to take responsibility for myself and my actions? The care and empathy for others? And the compassion and patience I’ve learned to have in abundance because of my own shortcomings and disabilities?

Well, those I can still do, all the time, no matter how much my RA bungs me up. Sure, sometimes it’s hard. Sometimes I’m not the sweet, loving person I want to be. But that never lasts for long. In the end, I’ll never stop having those qualities or being that kind of person. I’m still strong, still responsible, still proud of being a woman and a human being. Still able to love.

I’ll never feel guilty for that.

Note: I wrote this post for “Patients for a Moment,” a blog carnival being hosted by Rachael, the writer of the excellent blog “Glass of Win” tomorrow, Jan. 12. The subject this go-round is “guilt;” writers were asked to answer the question this post started with. Please be sure to read all of the submissions–this is a subject we can all identify with.

I’ve got to admit I’ve been feeling kind of low lately. There are some decent reasons—I’ve been away from home (my nest and comfort zone) taking care of my mother 24/7 for a couple of months, now; my Mom’s condition hasn’t improved; I miss my family and my wee beasties, PIB and Finny; my bursitis hips are a constant, often serious, discomfort; and my hands and wrists are always twingy, sore and achy. My next, uncertain chance for pain relief from the bursitis is weeks away, and of course, the rheuma pain will never really go.

Today I’m blue because the steroid injection Mom had a couple of days ago hasn’t relieved her sciatica pain. Yet. I emphasize “yet” because the doctor said (as mine did regarding the steroid injections I took for the bursitis a few months ago) that the drug could take a few days to work, and I’m still holding on to some vague hope. Still, I worry that it won’t have any effect on my Mom, just like it didn’t have any effect on me.  What then?

And I’m worried about her. Her mental health is suffering along with her body. Being the strong, healthy woman she’s always been, this pain and disability just boggles and depresses her. She doesn’t understand it. She doesn’t know how to fight it.

My encouraging words sound like platitudes, even to me. “It will get better, Mom.” “This pain will go, soon.” Like her, I no longer really believe them.

I worry because for each day she spends laying down, not moving unless she must, she loses more physical strength. I worry about her non-existent appetite, and the tiny amounts of food I manage to get her to eat each day. I know it’s not enough to fuel her body and mind, and each day can only bring more weakness. I fear that I’m simply bearing witness to her gradual decline, helpless to stop it.

The only physical comfort she experiences is during that short stretch of time when the narcotic pain killer is at full effect, or when she sleeps. My presence here, keeping her company and helping her get through each day is a comfort to her, I know that. I’m glad and thankful that I’m able to.

I’m trying to turn all this glumness around into a more positive attitude. I’m looking for the bright side, because I know there always is one. But so far, the only bright side I can find is that being here with Mom day and night for weeks on end has brought us much closer and has given us both a certain joy that has always been absent in our relationship. For that I’m grateful, and I’m mindful that if Mom hadn’t been stricken with this sudden illness, we likely would have never found it. Perhaps that’s enough, eh?

I want to thank you all, my friends, for your patience and continuing support as I work through this difficult phase in my life. Your comments uplift me, make me smile, and help me feel less alone. I know that this rough patch is temporary, that it will pass just as rough patches always do. But it’s a comfort knowing that you care and that you’re rooting for me. Thank you.