Reunion

An old friend found me on Facebook and got in touch recently. It’s been many, many years since we’ve talked; I’ve thought of J frequently and wished fervently we hadn’t lost contact with one another. Needless to say, I was totally delighted to hear from her.

What a lovely gift for the new year!

We chatted with Facebook’s IM function for a while, exchanged email addresses and phone numbers, and promised not to lose touch again. I came away from our short, happy conversation with a big smile on my face. She is one of the most beautiful, joyous people I’ve ever known. From the moment we met, we hit it off. J is a soulfriend. There are so few of those! She has the most wonderful laugh … and the most wonderful heart.

As we talked, I told her I write a couple of blogs. When she read the name of this one, she asked, does that mean you’re still having that awful pain?

I told her I am, but it’s not nearly as awful as it once was. I changed the subject and we talked about other things.

But later, I got to thinking about it. My old friend J is the only person, other than my daughter, who remembers the awful RA flares I used to go through when I lived in Germany. In fact, she frequently stepped in and ran my office for a day or three at a time when I couldn’t make it to work; when I was so crippled from joint pain and so out of it from pain meds that I was barely coherent.

It’s strange how isolated a person can feel with this disease. Cary remembers how I was back then, but her memories are, naturally, those of a child. Since she’s been an adult, she’s never seen me battle a flare as bad as I used to have. Mr Wren and I were married to other people back then. When we first got back together in the early 90s, he knew I limped and gimped now and then and I told him I had RA, but he’s never seen me deal with a serious, truly debilitating flare. My Mom and sister haven’t either. My fearsome memories are mine alone.

Sometimes I feel like I’m whining, like I’m a little too obsessed with the return of my RA symptoms. While they’re not as bad as they were before I went into remission, this disease is so damned sneaky. With each twinge and ache I flash back instantly to those agonizing old days. My mind cringes away from the memories and I fill with dread. I know that rheuma can ramp up at any moment. It won’t give me any warning. And the fact that I haven’t had a truly horrible flare, but just medium-sized, painful ones and little, nagging ones since the symptoms returned does not reassure me that I never will have a really bad one again.

I know better.

And yet I treasure the time I spent living and working in Germany. It was a life-changing time, a time when my mind opened, a time when I learned more than I ever thought I could. The rheuma pain is a part of that time in my life, woven deeply through it. There was so much I did in spite of the debilitating pain.

So. Am I obsessing about my RA? Am I being overwrought? Am I fearing something I have no real reason to fear anymore? I don’t know. But getting back in touch with J and having her validate my memories the way she did went a long way toward putting that niggling worry to rest. I’m not hysterical. I’m not a hypochondriac. This isn’t just in my head. My RA was and is real. I have lived through and coped with truly excruciating pain, and I did it with grace and, to the best of my ability, with a smile on my face.

I remember. And my dear friend does too.

A storm a day

That’s what the “Severe Weather Alert” for my part of the world says is coming. The first one, a wee stormette, is supposed to breeze through tomorrow, but isn’t expected to drop much rain. But then, on Sunday, a big one moves over us … and then another on Monday, and then Tuesday, and on like that until Friday. A storm a day.

Which, um, explains why my hands and wrists feel like they both have bellyaches today.

I think I’ve mentioned before how badly we need this rain – and even more, snow – here in California. We’re incredibly lucky; we haven’t had to do much water rationing so far, in spite of the drought moving into its fourth official year. It could be much worse. Nevertheless, a series of good, moisture-laden storms coming in off the Pacific to soak the northern part of the state is very good news. We’ve already had a nice series of storms in early December – remember my freakish 18 inches of snow? – and last week, we had several days of good, soaking rain here and snow higher up the mountain. It hasn’t been very cold, however. Days have topped out in the mid-to-high 50s.

And now this new system with its “storm a day” attitude is spiraling in. It will be quite a lot colder. We’ll have lots of rain and lots of snow. I’m almost afraid to hope for it, but could this mean the end of the drought?

Oh yes, please.

Of course, with the barometric pressure boinging up and down, down and up , my joints are probably going to be screaming at me. Never fear, dear joints. In fact, chill, OK? I have my Thermogloves right here. I have plenty of warm blankets. I have a heating pad and I know how to use it. A paraffin bath for angry hand-dipping, too. We have three cords of stovewood, and with Matt and Cary living here with us this year, I’ve got a couple of strong young people around who can do the heavy work of carting in wood and stacking it by the stove for use. I won’t have to struggle with it alone.

I am grateful.

My plans today include a trip to the grocery store to stock up on perishables, and then to the computer store for an external hard drive (My puter is telling me it’s internal drive is just about full, which sorta blows my mind, but that’s another post). So I need to do some backing-up, and then get on the phone with Dell if that doesn’t do the trick. Wish me luck – I’m off!

Storm’s a-comin’, honey!

Breakfast today …

… was a bowlful – about a cup – of pre-cooked quinoa, bulgur wheat and steel-cut Irish oatmeal, nuked until steamy. Mr Wren, the dear, likes to mix things up. He also has no sense of proportion, so we have a huge container full of cooked grain cereal in the fridge that needs to be eaten soon. I whittled about an eighth off the top this morning.

Normally, I eat just Irish oatmeal with a teaspoon of brown sugar/Splenda blend, a generous shake or three of Saigon cinnamon and a scant splash of evaporated milk. This, I’ve learned over the last year, is a delicious, filling, low fat, slow-carb breakfast. It’s wonderful on cold mornings. It sticks to the ribs and provides a nice, slow-burn energy boost. I usually make about four cups at a time and refrigerate the leftover cereal, which microwaves well. Since I don’t like it every single morning – I eat an egg with whole grain toast or toast with a slice of Tillamook sharp cheddar on the non-oatmeal days to avoid breakfast boredom burnout – four cups of oatmeal lasts me about a week.

But yesterday Mr Wren got up wanting hot cereal and, being himself, wasn’t satisfied with just oatmeal. So he got out the Dutch oven, pulled a bunch of different grains, and made himself some. Lots of it. Now I’m helping him eat it before it goes bad. Cary and Matt don’t eat hot cereal at all. They’re both grown-ups, but they prefer Lucky Charms and Cap’n Crunch.

I despair.

I’m writing about this because, like a lot of people who’ve worked 9-5 most of their adult lives, I’m terrible about eating breakfast in the morning, regardless of whether it’s a nutritious one or one that just puts me into sugar overload. When I was working every day, I simply couldn’t make time for brekky before I started my 50-minute commute down the mountain at dawn. And, I was never hungry at that time of morning. I’m one of those people whose metabolism doesn’t really wake up until about three hours after the alarm goes off. That meant that at 8:30 or 9 a.m., I was suddenly, stomach-growlingly ravenous, but way too busy to stop and eat a nutritious, time-consuming breakfast.

So instead, I ate the cookies or donuts, sometimes both, that my colleagues and I frequently brought to the office as a form of tasty sustenance and bribery.

Eighty pounds later …

Back in my slender Germany days, we’d do things a bit differently. I mostly didn’t eat breakfast back then, either, which meant a long stretch of empty-stomachness until 11, when I’d take off like a flash for a slice of pizza and a Diet Coke in the Burger Barn. There weren’t any grocery stores or donut shops handy along the route to work in the morning, and the commissary didn’t open until 10 a.m. But about once every two weeks, my colleagues and I would pick a day and we’d all, German and Americans alike, bring Frühstück foods to the office on a day when we knew the boss would be out. Sneaky, weren’t we?

Everyone brought something – crusty, chewy, sliced bread, Brötchen ( plain German bread rolls, deliciously crispy and golden on the outside; soft, white and fluffy on the inside), several different types of cold cuts, cheeses of all varieties, some sliced, some spreadable. Jam. Pastries. Fresh fruit. Soft dairy butter. Orange juice.

And then we’d crank the poor old office coffeepot into overdrive.

Naturally, people from other offices on the U.S. Army post would stop by our office for this or that – we were Army  Public Affairs, after all. No problem – or kein Problem, as my Germany colleagues said – we invited them all to join us. It was always quite a jocular little breakfast party. If Fred (the fortuitously absent boss) knew we were using the big conference table in his office as a breakfast spread in his absence, he never said a word. But we never even considered asking him to join us, as he’d have nixed the whole thing.

You see, Fred always ate his breakfast before he came to work. It was always a big, hot breakfast, one of his “things.” His wife made it for him, and he ate it while he read the day’s Stars & Stripes. I kid you not – he made sure we knew about it. Fred was a nice but rather humorless man. He didn’t have a lot of imagination and was obviously bored to tears. I figured he was just serving out his time as a high-ranking civilian, waiting for the dayl he could retire on his comfortable government pension .

Oh, boy. There I went, off on a tangent.

OK. Back to it: my point was that while I’ve always been bad about making a healthy breakfast part of my day, I do it now. I think my health has improved because of it. Part of the reason I’ve been able to change my habit is that I’m not working outside my home these days, so I don’t have a long, crack-o-dawn commute to face. And while I’m looking for full time employment again, that’s one thing about it I don’t look forward to. I’d grown to hate that long drive at the beginning and end of each workday. I hope I can find work a lot closer to home this time.

But even so, nuking pre-cooked cereal is something I can do. It’s quick. Eating it doesn’t take long. I can even bring it to work with me and nuke it there, if there’s a microwave handy. I don’t mind eating at my desk – but these days, I want to make sure what I’m eating is good for me and isn’t going to add to my middle-aged spread.

There. I did it! I wrote a post mostly about nothing, just for the fun of writing, and got to take a nice little trip back down memory lane in the process. The only trouble is that now, I’m craving Brötchen. Guess I’ll have to google up a recipe …

 Have a great day, everyone!

Buckle Me Up: No more invisible RA

I wish there were  real, flesh-and-blood human beings who also have rheuma in my community. Because I’d like to get to know those people. I’d like to talk to them, compare notes. Find out how they cope with the day-to-day “aches and pains” of the disease. I’d like to commiserate with them and exchange ideas on ways to deal with the “aches and pains” (read agony) of rheumatoid arthritis.

But it appears they don’t really exist. As I go about my days I don’t see other people limping along on painful feet. I don’t see people fumbling their wallets at the cash register in the grocery store, trying to slip the debit card out of it’s too-tight slot with hands and fingers stiffened and rendered breathtakingly painful by rheumatoid arthritis. I certainly never see anyone else struggle to put a jacket on because of an RA-impaired shoulder joint, or try to put food in a mouth that will open only an inch or two because the joint that hinges their lower jaw to their skull is inflamed and exquisitely painful upon movement.

No. I don’t see any of these people or any of these conditions. I only experience them myself.

But I read that there are about 2 million people in the U.S. who suffer with RA just like I do. I’m No. 1,457,932 in that exclusive group, I guess. I don’t have a card, so I can’t be a card-carrying member of the Hey-I-Have-RA Club, but according to the Wise Statistic Keepers, I belong to the club anyway.

Two million American men, women and children share this rotten disease with me. Yet I’ve only met one of them personally. That was 20 years ago in Bremerhaven, Germany, when I lived there. That man had it mainly in his spine. I was married and he was always trying to hit on me, so it was uncomfortable talking with him, but he absolutely recognized – and empathized with – my pain. He suggested alternating hot and cold packs on sore joints as a possible method for relieving my pain. It sometimes worked for him, he said.  I’ve tried to follow his compassionate advice (when I can bear the cold-pack part) ever since.

He and his wife were transferred to Italy not long after I met him. At the time, I was relieved, but I’ve often thought of him since then. I’ve wondered how he got along, whether the warmer, drier climate in Italy relieved any of his pain. I hope it did.

When I’ve admitted to others that I have rheumatoid arthritis (perhaps they asked, solicitously, why I was limping so heavily) a frequent response is “Oh! I know what you mean! I have arthritis in my knee! Isn’t it a bitch getting old?” And then they launch into their experience with their painful, creaky knee. I listen respectfully. I know osteoarthritis hurts, too. A lot.

But really, they don’t have a clue.

I wasn’t “old” when I was diagnosed with RA. I was just 31. I was a young mother whose career was just starting to take off. I’m “old” now (whatever that means), but I sure wasn’t back then. Rheumatoid arthritis isn’t a “wear and tear” disease, a natural (if annoying) part of growing older. RA is an autoimmune disease. That means the body, which is profoundly confused, attacks its own joints as if they’re foreign invaders. The body is out to destroy itself in order to save itself. Go figure.

Rheuma attacks randomly, carrying out clever ambushes so diabolical and unexpected that the Special Forces could learn stealth tactics from it. The inflammation and pain it causes can range from mild to horrific. It can cover that range during the same day, or perhaps over several days. Or a week. Or longer. The pain can hit more than one joint at a time. It can move around. Today my left knee hurts. Tonight, it might be my right shoulder, or my right ankle. Maybe both. Maybe neither. I never really know what to expect.

Try explaining that to skeptical family members and co-workers.

Sometimes RA only slows me down a little. Other times it literally disables me, giving me an unwanted glimpse into my own future. Gee, thanks, I think. I really wanted that image of myself gliding down the mall on a chunky little motorized scooter, my fat, flabby, polyester-clad arse spilling off both sides of the saddle. Yeah. Thanks so much.

Such images give me real motivation, however, to move my body as much as I can. I don’t want a future of RA-imposed weakness and obesity, a life where my only real pleasure is eating. The very idea appalls me. So in spite of the pain – or perhaps, because of it – I do what I can to prevent that particular image of the future from coming true. I mind my calories, eat healthy foods and exercise for flexibility and to maintain my independent mobility.

Yet it’s possible that RA will disable me anyway. I’d prefer not to think too hard about that.

Even though these fears and experiences, this daily pain and stiffness, these frequent schizoid sneak attacks my body wages on itself are shared by 1,999,999 other Americans and many more millions of people all over the world, I deal with my day-to-day, intimate and personal case of RA utterly alone.

How can that be? Why aren’t there local support groups for people with rheumatoid arthritis? How come there are no special exercise classes, or classes on how to cope better with the disease available? Why aren’t they part of every town’s park and recreation program, available for free or for minimal cost? Why, in the last century and during the first decade of the new millennium, hasn’t medical science found cure for this disease? Why don’t people know what it is and what it’s not? Why is it so hard for me to find others who also suffer with RA?

I don’t have answers to those questions. But I’m working on starting up those classes I just mentioned. I’m going to do it myself. I’m at a point in my life where I won’t mind getting up in front of a group, talking about and demonstrating ways to cope with RA. I want to do this. I want to help others who are struggling with this disease find some comfort and camaraderie. I want them to have hope.

The flesh-and-blood people who have RA in my community are invisible, just like me. But if I have anything to do with it, we won’t be for much longer.

~*~*~*~*~*~

 

Did I mention hope? Well, here’s some: A new advocacy and charitable nonprofit organization that will work for people with autoimmune arthrits is forming right now. Read on:

What if autoimmune arthritis conditions were universally understood? What if you never again had to hear, “you’re too young to have that!” or “why don’t you take some aspirin to make the pain go away?” or “but you don’t look sick!”

 Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night’s sleep? What if there were in-depth, age-appropriate exercise programs available where you live that catered to different levels of disability and fitness preferences?  How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients?  What if there was a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability?

Hopefully beginning in 2010 these wishes will start to become a reality.

The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*.  The mission: Eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life for those who have it through education, partnerships and support.  The IAAM is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.

The IAAM is not in competition with any existing charity.  In fact, part of the mission is to partner with existing organizations to assist with autoimmune arthritis awareness efforts.  Recently the IAAM joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. 

Founder Tiffany Westrich is personally working with the Arthritis Foundation’s “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an intricate role.

In addition to partnerships, a primary focus of the movement is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis.”  Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease; developing the first official autoimmune arthritis charity bracelets; and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009).  

The IAAM hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.

If all the autoimmune arthritis sufferers around the world come together, we can make this a reality.  But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit.

Today, many autoimmune arthritis blogs (just like RheumaBlog, which you’re reading now)  are joining forces to reach out to our community of sufferers for help. The IAAM is asking for $1 donations to assist with nonprofit start-up costs.  Every dollar earned will bring all of us who cope with autoimmune arthritis one step closer to being understood.

 To view a complete list of start-up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.

 Note: This piece has been cross-posted in my other blog, Blue Wren.

Starting out with mindfulness

The truth from my bathroom scale tonight.

Nine pounds.

Sigh.

Yes, nine pounds is better than ten pounds, or Oh. My. God twenty pounds.

Where did those heavy-bottomed nine pounds come from? I’ll tell you.

They started on Thanksgiving, when I made many, many delicious things with real butter and real cream, because foods taste so much better that way. From Thanksgiving until now there has been a cinnamon cake. A cranberry-pecan tart. There have been cookies. Peppermint bark and Lindt truffles and candied fruit slices. Crackers and chips. Sliced salami and cheeses of various savory colors and textures. Chocolate mousse with whipped cream. Hazelnut cocoa, steaming in the mug. Oh, and breads. Rich, soft breads, toasted with jam, or buttered and mopping up gravy.

And all this plenty because the end of the year was upon us. Solstice. Dark days. Darker, longer nights. The promise of ice and cold to come.

But now, the year has turned. We have a fresh page! The days are getting longer. Just by a minute or two each day, but that’s enough. Longer days, shorter nights. Before we know it, it will be spring. Then summer.

For now, though, it’s still cold. Snow is waiting in the wings, preparing a surprise.

I’m celebrating this new year with mindfulness. Mindfulness is my watchword for The Year 2010.  I now put aside the childish, joyous gluttony of the past month or so and embrace the real joy of being healthy and strong, full of energy and light. I know how to do this, how to eat well so I can be well. It’s time to renew that pleasant effort.

I am nine pounds backwards today. But it’s all right. They’ll be gone before long and I’ll be back at my old end, with momentum built up for a new beginning. Slowly, gently, there will be less of me. And less. And I will be lighter. It will be hard to stay on the ground. I might float away …