Taking my life back

Kelly Young, who writes the excellent blog “Rheumatoid Arthritis Warrior” posted a piece about cooking with RA and invited her readers to send her their stories, their tips and their recipes.

The idea intrigued me. So I responded. But I also decided to post my response here:HomeCooking1

A little over a year ago I made some massive changes to my diet. Why? My annual check-up with my GP produced this sobering news: My blood sugar was high — I was borderline diabetic; and I was obese and getting obese-er. With a family history of heart disease, I was a living, breathing example of “metabolic syndrome,” the popular term for those of us who are over 50, live sedentary lives and overeat. We’re walking time-bombs. That we will be sick sooner than later is a given.

On top of that, the RA that had been in remission for about 10 years was back, mainly as stiffness and mild pain in my hands. I knew from past experience that it wouldn’t stay mild, that eventually I’d be facing disabling pain and deterioration of my joints.

My doctor suggested changing my diet, both to lose weight and bring my blood sugar under control. She hoped, as I did, that by doing this I’d avoid Type 2 Diabetes and avoid having to take drugs to control it. I’d also be doing my heart and my joints a great favor.

I walked out of her office truly scared. My weight gain had taken place over a period of about 15 years; I’d pretty much given up trying to keep it in check. Coming home tired from a full day of work each evening had made me a rather lazy cook, depending more often than not on processed foods out of boxes and cans, or fast foods picked up on the way home because these were quick and easy. And while I tried to avoid snacking, it was a losing proposition. I loved my crackers and chips too much to give them up in the evenings and loved the donuts and other goodies my co-workers (and I) brought to work most mornings to share.

Yet I knew, now, this was serious. I had to face it. I could become very ill. Diabetes could blind me or cause me to lose a limb. My weight, along with making me feel ugly and blob-like, could trigger a heart attack. It could cause, with the RA, terrible damage to my joints. I might end up in an extra-wide wheelchair or worse, bedbound and dependent upon others for everything in my life.

And scariest of all: I could die. It wouldn’t be a dignified, painless or gentle death, either.

So I started researching diets. Oh, I knew how to diet — I was a chronic and chronically defeated dieter. But this time I looked into nutrition. I looked into the ingredients in processed foods. I learned how the sugar I ate (in many forms in many products) destroyed my body’s ability to use it efficiently, and how that excess sugar in my blood was damaging my body. I learned that “giving up sugar”  would take more than just saying “no” to a couple of donuts with my coffee each morning.

I didn’t want to have to weigh everything I put into my mouth, or count calories obsessively. I didn’t want to feel like I was missing out on tasty foods, restricted to bland salads dressed with rice vinegar. Ugh. But after reading and learning, thinking hard about it all and readying myself for the change, I knew what to do.

Basically, I simplified the whole shebang.

Today, I eat only fresh chicken breasts, pork loin or fresh fish. If I eat red meat, it’s lean lamb stew meat, cooked into soup. I’ve given up “white” foods — white flour, white rice, white pasta, potatoes — in favor of whole grain flour in bread and pasta, and brown basmati rice. The reason? These “white” foods all turn into sugar once you eat them, making the body’s blood glucose level spike way up. Whole grains take a lot longer to digest, so they don’t cause that dangerous spike in blood glucose. They also provide excellent fiber. I eat beans of all kinds. And I eat a lot of fresh fruit and vegetables. The fruit I make into smoothies with yogurt and soy milk; the veggies are steamed, stir-fried or made into salads. Snacks consist of a piece of fruit or a handful of almonds or other nuts.

Yes, it seems restrictive, all written down like this. But what was amazing, to me, was how easy and quick cooking this way was. I use an indoor, electric grill for cooking the meats and fish. While they cook, I steam or wok the veggies, or perhaps make a salad. The other amazing thing was that I liked what I was eating. Grilled foods, subtly seasoned, are scrumptuous.

By making my portions smaller (except for veggies, which I eat as much as I want) and eating everything fresh, I started losing weight. It was slow. There were a lot of plateaus during which I lost nothing. But I kept with it, learning new ways of cooking and trying new recipes. I discovered Indian food, which I love. And a little over a year later, I weigh 50 pounds less.

My doctor is pleased with me. I am no longer a “metabolic syndrome” patient. My blood glucose levels are normal. I’ve lowered my risk of heart disease. And while I still have RA (and as I expected, it has slowly ramped up in terms of pain levels) I feel confident that at least, I’m keeping my weight from doing even more damage to the joints in my hips, knees, ankles and feet. I take Arava and sulfasalazine for the RA, see a rheumatologist every three months, and have my blood tested every six weeks. I’m a healthy work in progress.

And, to my surprise, I don’t miss donuts, candy bars, potato chips or crackers. If I want something sweet, I put Splenda in my coffee or I treat myself to an occasional “no sugar added” fudgesicle, which lets me enjoy the sublime taste of sweet milk chocolate while not causing my blood sugar to go through the roof.

I don’t eat out very often any more, it’s true. But guess what? I spend less money that way. And when I do go out for a meal (once a week or less) it’s a treat. I eat what I want for that one meal, and then I go back to my healthy food.  I take healthy leftovers from home for lunch rather than buying fast food. I spend less overall on groceries since I no longer buy snacks and processed foods in boxes, cans, and out of the freezer section. Goodbye, Hot Pockets and Red Baron!

As a result I feel much, much better. My clothes are smaller, they feel less restrictive, they’re prettier and I’m enjoying looking nice again. I can bend down and pick something up off the floor without cutting off my own breath. I have more energy. My self-esteem has improved greatly. And even showers take less time — I have less of me to wash!

Most of all, I feel as in control of my life as I can be. I know I can sustain this diet, this lifestyle, indefinitely, keeping my weight down while eating mindfully and with my own overall health at the top of my agenda. I don’t know what new problems RA will face me with in the future — only that it will. But at least I will be able to face them with a stronger, healthier body and a positive attitude. I’ve taken my dignity back.

 

I’m b-a-a-a-a-c-k …

I’m back from the family reunion. The aircraft I flew in didn’t crash on take-offs or landings, and they didn’t fall out of the sky. No wings tore off, no engines caught fire, no landing gear stuck. In fact, the flights to Tulsa, Oklahoma via Denver, Colorado and back to California were some of the gentlest I’ve ever been on. There were hardly even any turbulence bumps, and only a couple of those stomach-tickling little swoops in mid-air.

I think I’ve finally gotten over my life-long fear of flying. I have only one thing I can attribute this to: the iPod Touch my family gave me for Mother’s Day last May. Really. As soon as my daughter tapped my arm – the signal that we were well off the ground and at cruising altitude, so I could open my eyes and start breathing again – I stuck my iPod’s earbuds into my ears, cued up some soothing music and started playing Wordology. And then Solitaire. I even watched an episode of a PBS Mystery series I’d downloaded.

I wish I’d had an iPod when we flew to Europe and back in the late 80s and early 90s. I wouldn’t have needed those tranquilizers.

The reunion itself was a hoot, just like I expected. Mr. Wren’s family is pretty large. His dad had eight brothers and sisters, and they all went on to have large families themselves. Mr. Wren was the middle child of five. While not everyone in the extended family showed up at Feyote Park in Cleveland, Oklahoma for the reunion, 93 of them did. They ranged in age from just over a year to ninety years. And with the exception of us, the California branch, they all live within a hundred miles of each other in Oklahoma.

It was fun – and a little bit disconcerting – to have everyone I met that day share my last name. I got to meet a brother-in-law and three sisters-in-law that I hadn’t been able to before. I met nephews and nieces, and my first grand-nephew. There were so many names that I gave up trying to remember them all, but they were such nice people – they were smiling and friendly and as pleased as I was that we finally got to meet.

The weather in OK – hot, a bit humid, and breezy – made the rheuma nasty all four days I was there. Hands were constantly sore, and my right knee kept getting stiff and achy. But when a volleyball game was suggested, I surprised myself and joined it. I haven’t played volleyball since high school (when I was very good at it), and while I was less than competent playing it now, I did have a lot of fun. At first, I was berating myself, anticipating severely aching hands and wrists after the game, but that didn’t happen. Isn’t that something? I also tossed a Frisbee around with my nephew, my daughter and two of my sisters-in-law. We had a blast. I haven’t played with a Frisbee in years, either, but I did just fine. I even ran! And tripped and fell! And had to have a bunch of wicked little stickers plucked off the back of my shirt and jeans…

Since coming home, I’ve developed an itchy rash on my forehead next to my hairline, at my jaw line and along my neck. Annoying. I’m pretty sure it’s because of the sulfasalazine I’m taking for the rheuma. Photosensitivity is a pretty common side-effect. I knew that, but I wanted to play. I needed to play.

And that’s a new experience for me. I’m almost 53. Running, jumping, playing with balls and tossing Frisbees weren’t part of my repertoire any longer, and hadn’t been for many, many years. But my weekend in OK taught me something new and joyful – I CAN play, at least sometimes. I’ve lost a lot of weight during the last year, and I’m sure that’s one of the reasons I felt like I could – and I want more. I’m going to buy a Frisbee one of these days soon. My daughter and I plan to walk to the local park – and we’re going to play Frisbee. The idea just delights me. It will be good exercise and a great stress reliever for both of us.

Outahere … for a while

flying_c5Yep, once again I’m about to board a jet plane and zoom away for a while.

It’s funny, but for almost 15 years I managed to do all my traveling on the ground. I was in a car or on foot, period. Then in 2007 I flew to Washington, D.C. In 2008 I flew to New Mexico. And this year — tomorrow morning, in fact — I’m flying to Tulsa, Oklahoma. Haven’t been there since 1980.

A long time ago.

The occasion is my husband’s gigantic family reunion. It’s going to take place this coming Saturday and Sunday at a local park; there will be pickanicks, barbeques, frisbee games, a few scratch softball games and who knows what all else. Three-legged races for the kiddies?

Certainly, there will be a lot of meetings and greetings, coversations and laughter. I’ve met most members of Mr. Wren’s immediate family, of course, but I’m given to understand there will be many more people there bearing his Americanised, Dutch patrinomic name. People he hasn’t seen since he was a child; others he hasn’t seen since they were children.

Should be a hoot.

So, send courage through the ether at me one more time. I’m a huge coward when it comes to flying. I hate it. I spend the entire flight in a state of clenched-jawed non-movement, as if my moving will somehow cause the aircraft to fall out of the sky. It’s an old, old phobia, this one, connected directly to an irrational childhood fear of heights.

I’ll get through it, just as I have before. This time, I’ll be on the ground just long enough for my stomach to settle down, and then we’re flying back. On Monday. Early, early in the morning.

I’m taking my camera. We’re also visiting a place called “Woolaroc” on Friday, which I hear is rather wonderful. I’ll shoot some photos and, if they turn out OK, I’ll share them here.

Bye, gang. Back next week as long as the airliner doesn’t lose a wing or something. In which case, well, it’s been fun …

Under pressure

My hands are stiff, achy and swelly tonight. There was a time when I’d have had no idea what could have brought on any particular flare — they all seemed incredibly, frustratingly random.

Sometimes they are. That’s just how rheuma is.

But I know why barometermy hands hurt.  The barometer is rising, and a high pressure area is settling in to the west. That’s all it takes.

Although tomorrow is fall equinox, I live in Northern California, and it’ll be hot outside for the next several days. Temperatures generally stay quite warm through mid-October around here, then it cools down slowly and gently after that. November and December finally feel sharp, crisp and autumny. If we’re lucky, the rains come. My home is in the Sierra mountains about 50 miles west of Lake Tahoe. Even at 3,200 feet above sea level, it usually doesn’t get truly cold until January.

I’d always heard that older people moved to warm, dry states because the higher temps and lower humidity helped their aches and pains. So it always puzzled me that it never seemed to matter what the weather was like when my joints flared. When I was first diagnosed with RA, I lived in Northern Germany, right at the edge of the North Sea. It was damp, windy, cold and rainy about nine months out of the year. Summers were pleasantly warm, never hot, and sometimes humid. The rheuma attacked all year ’round. I absolutely loved it there.

When I returned to California in the early 90s, I thought the warm, dry weather here might help. It didn’t. Wet and cold, warm and dry, it made no difference at all.

I lived here for five years before the RA finally went into remission all on its own. I wasn’t taking any medications for it; I’d gotten tired of popping pills and dealing with unpleasant, risky side effects while never getting any relief from the flares or the pain. I’d given up. I was living with it.

… More to come …

Rheuma semantics

I have rheumatoid arthritis.

I’ve had it for 22 years. Our relationship has never been friendly.

On some blogs about this disease people state “I take X for my arthritis,” or “I couldn’t go to the party because my arthritis flared up.”

There were so many statements like this, on so many blogs, that it started to bother me. “My arthritis is worse in humid weather.” “It’s hard to explain my arthritis to others.”

What bothers me is not what medications the writers are taking for the disease, or what it does to limit their lives, or how it’s worse at one time than another, or even how difficult the disease is to understand and explain. All of those things are part of having rheumatoid arthritis. I can identify and empathize with each one.

What I can’t figure is the “my” part.

Rheumatoid arthritis is a disease of the body’s autoimmune system, which for some reason sets up a continuous attack against its own tissues, treating them as if they were a foreign entities that must be destroyed. Rheumatoid arthritis causes the synovium, a sort of fluid-filled capsule between the joints, to become inflamed, which makes the joints painful – often excruciatingly so. Over time, this constant attack on the joints causes them to distort or freeze up. The disease eventually disables and cripples its victims. Sometimes it does it fast. Other times it can take decades.

Rheumatoid arthritis can attack other organs in the body, too. It can affect the lungs, the heart, the circulatory system and the eyes. It can make the sufferer feel as if they have the flu all the time. It can make them feel worn out, fatigued for no good reason. It affects each individual differently, so it’s very difficult to treat. A drug that works for one person won’t necessarily work for another.

And the worst thing is that rheumatoid arthritis is incurable.

So where do semantics fit in with all this?

Well, I have it, but damn it, rheumatoid arthritis is not “mine.” I don’t own rheuma and I don’t want to. It’s a malevolent stranger, a sneaking dark enemy that’s attacking me. It’s a disease I must fight against and even learn to cope with, but it sure as hell isn’t “mine.”

I believe the words we choose to use in our thinking conversations with ourselves and in our everyday conversations with others have a profound effect on us. If I start talking about the disease I’m afflicted with as “mine,” then I believe that I’ve accepted it. That I’ve learned not only to cope with it but to live with it, even to nurture it. After a while it really is “my” arthritis. Like “my” cat or “my” shoes, “my” house or “my” daughter. It’s as if it’s an old, familiar but not particularly pleasant friend.

So I fight against using those words. Rheuma is not my friend, will never be my friend.

It’s out to stop me from moving. To stop me from cooking, or sweeping the floor, or driving to work. It’s determined to make me sit still and suffer, not daring to move any more that I must. It means to keep me from playing, from sleeping, from making love. Ultimately, it’s out to cripple me and someday, to kill me.

Why in the world would anyone want to accept that? To own it? To nurture it? Rheuma is absolutely not “mine.” I will not claim it.

But I will fight it.

As in any war, I win some battles and lose others. There are times when I have to retreat, wounded, and take the time necessary to recover my strength, my courage and my will to go on.

I’ve been lucky. It retreated – went into remission – for about ten years. Or at least I thought it did, since I was no longer hurting every day. My life went back to normal. I could walk without pain. I could open doors without pain. I could sleep. I went hiking, started gardening, went camping and fishing. I worked. And oh, I was relieved and thankful, but ever mindful of the fact that there was no reason rheuma couldn’t come back anytime and ambush me, just like it did in the beginning.

I was wrong, though. It wasn’t gone. It was still in my body, working slowly and quietly to undermine my foundations. And about four years ago, it began attacking openly again.

Today I fight rheumatoid arthritis every day again, but this time, I have a variety of weapons. I have medications, I eat mindfully, I get plenty of sleep during the lulls between battles, I drink lots of water. I’ve lost nearly 50 pounds and I’m keeping it off; to me, that’s like taking and holding a major strategic city. I’m working on losing another 20 pounds. When I reach that goal, I’ll be at the optimum weight for a woman of my height and build. Why do it? Less stress on my joints. Less stress on my body, period. I’m stronger. It’s like armor.

This blog is about my battle with rheumatoid arthritis. At the moment, I’m writing it for myself, mainly, but if you’ve found me and you’ve read this far, I’ll be delighted if what I learn and write about helps you as well.

We can’t cure rheumatoid arthritis. But we sure as hell don’t have to surrender to it.