Quiche, sunshine and hope

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.

Hip shots–Round 2 (UPDATED)

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.

 

 

Looking up

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.

About that guilt …

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 20th 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.

Rough patch

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.

 

 

 

No parking

Hi, friends. Here’s another update on the current situation:

Mom’s sciatica pain increased so much that I took her back to her doctor again, right before New Year’s eve. The doc kindly increased her narcotic pain medicine dose to every four hours (rather than every six). Then he prescribed a walker for her, since walking is so painful and she’s so unsteady on her feet.

She absolutely hated that she had to get a walker. To her, it means “frail old lady.” Her doctor assured her that the walker was simply a tool to aid her mobility until her sciatica could be treated and relieved. It’s temporary, he said.

So we got the walker. It’s pretty darn nice—it has wheels, handbreaks and a seat. And to my delight, once she started using it, Mom’s attitude toward the walker did a 180. It makes moving much less painful for her, and she feels a lot more secure on her feet. (I’m relieved, too. I was so worried that she’d fall, and that I’d be unable to catch her in time or even injure her more trying to).

She gets exhausted very quickly when she’s up, so she appreciates the seat on the walker. She sits down at the sink to brush her teeth, fix her hair and put on makeup, all of which make her feel better. That walker has made a really big difference in her outlook.

Finally, it was time for Mom to see the pain specialist. He did an epidural lumbar injection of steroids in her low back yesterday, hoping to relieve her sciatica. As of this morning, nothing has changed—she’s still in great pain—but he warned us that it could take a few days before it takes effect. So we’re being patient and hopeful.

In the event that the injection doesn’t work, he said we should call him. And if she does experience improvement, but not a complete eradication of pain, then he’ll do another injection in two weeks.

And my bursitis hips?

Well, the lack of a parking space at the VA hospital nixed my opportunity to, once again, try steroid injections. Yep, you read that right: the lack of a parking space. I went to my appointment on Monday, only to find every parking lot surrounding the VA hospital facility completely full. There was no place to park, period, and there were so many people cruising the lots looking for spaces that the moment one opened, it was taken.

I ended up parking illegally in front of the physical therapy clinic, went inside and told them what was going on. I was already 20 minutes late at that point, so I didn’t have much hope that they’d still see me. They wouldn’t, and I understood why. Instead, they rescheduled my appointment for Jan. 24.

I was devastated about missing my appointment for such a stupid reason, but I’m over it. I’ve toughed it out this long, so I guess I can tough out another three weeks or so with seriously achy hips. And I have to admit that since the first round of steroid injections didn’t work, I don’t have a lot of faith in this second round. Still, it seems to be the only real possibility for relief.

On the bright side, the weather is simply gorgeous. We have bright sunshine, clear blue skies, and it’s snappy cool but not cold. I’m planning to take a short walk in a while, while Mom naps. The walk has to be short; I can’t walk or stand for long before my hips start killing me. But I really need the fresh air and a change of scenery.

I hope this post finds all of you feeling well and enjoying this first week of the New Year. While it has started out a bit grim for me, I have a feeling that 2011 will be a better year than 2010 was. Yep, I’m an optimist. I can’t help myself.