Main » September 2004
September 29, 2004
About Writing
Today, I'm trying to write myself out of fatigue. I'm trying to do anything it takes to just feel like the Renee I am when I'm not having an RA day.
It's a chillier day, a gray fall noon in Ohio that reminds me that summer is over. I tend to like these days, I get a lot done, and think of the world in terms of letters then words then sentences on a page. Gray fall days are for the imagination, for writing or for reading a book, for taking myself outside this world and into that creative space I crave.
When I enter the realm of my creative self, my RA is not longer a factor. I become the Renee that I know I am without worry about the outer shell that deals with fatigue and ailments and swelling. It is the core essence of who I am; I put to paper thoughts and ideas, imagining characters and situations and paint a landscape in words.
Maybe this is why I write stories; they free me from my present self and take me on a journey of discovery. I'm currently working on a story called "Theme and Variation," which is grounded in my experience in ballet. Even though I can't physically be in that world, when I write about it, when I create the world of the story and the characters it is real to me all over again. Here's a bit of what I've been working on:
"Lucinda Gates was a ballet mistress. She was a tall slender woman whose hair I never saw. She kept it pulled back and tightly knotted under one of a collection of exotically colored silk carves. It had the effect of making her head look much bigger than the rest of her body, as if her chest would collapse at any moment, sending her head rolling off her long, thin neck. Her features were severe: cheekbones that stood like regal plateaus over caved, sunken cheeks; a slim nose that was slightly crooked in profile; large, rolling eyes caked with dark shadow, liner and mascara. Her threadlike, china-red lips were polished to a high sheen with lipstick and gloss, giving them the look of a scrap of patent leather. Lucinda Gates was scary; there was no two ways about it."
I hope that when it is all said and done, that I'm remembered not for having RA, but for writing stories. RA can be a footnote that reads, she never let it stop her from doing what she loved the most.
Posted by renee at 10:06 AM | Comments (0) | TrackBack
September 28, 2004
My Visitor
For the past couple of days, my ol' buddy Fatigue has come to visit. It's the same stuff with him: overstays his welcome and leaves me tired out, without helping with the laundry or the dishes!
I tend to be the kind of person that is intolerant of being tried. I try to make it a mind over matter situation, and this is often not good for me.
But, as usual, I do have some things that I do to overcome that unwanted houseguest, Fatigue:
1. Plenty of sleep. The old adage of "early to bed, early to rise makes a person healthy, wealthy and wise" applies here. Fatigue usually requires a full 8 hours of shut-eye for as many nights in a row as possible.
2. Eat good foods. While I might feel like my body is going to shut down at any moment, a meal of junk-food snacks isn't giving me the fuel I need to get better. Fruit, veggies and protein work better than corn chips, ice cream sandwiches and a box of crackers when it comes to getting on with it.
3. Asking for help. This one should be my #1 because it is the one I'm the absolute worst at. But asking for help is the critical factor to dealing with exhaustion caused by RA. Delegating chores or work to others... and not feeling guilty about it.
4. Recharging psychologically. For me this is reading, listening to music and meditating.
5. Taking breaks in the day to rest and recharge. Often, I go for a massage, too, when I need it. I don't know if the massage helps the RA, but it relaxes the overused muscles and works out the knots of tension that cause my RA to be more difficult to manage. The other thing is a power nap -- 20 to 40 minutes -- that allows the body to relax and repair before moving on with a busy day. If I can't get a power nap, I'll take 15 minutes and have a cup of tea or something else relaxing.
The worst part about RA is the things I can't control. But flare-ups and fatigue can be managed. Which reminds me, I need to go get my tea kettle started and put on some soft music. Nothing like trying to follow my own advice.
Posted by renee at 2:11 PM | Comments (0) | TrackBack
September 22, 2004
About Help
My little dog, Emmie, got something lodged between her jaw and her gum today. She didn't want to let me put my finger back there to try to get it out, so I called the vet. But the vet couldn't see her until 2 pm, which was three hours from the time I called, and Emmie seemed so uncomfortable. She kept smacking her lips and trying to get her tongue back to remove the obstruction, but to no avail. Next she tried to hack it up. Then she'd flop on the floor, with a desperate little sigh and looked up at me with her big brown puppy eyes.
So I called my dad, who, luckily, lives less than 5 minutes away. He was trying to open her mouth wide enough to see whatever it was that was in there. Instead of getting a look, it had the effect to pop it out. But before we could tell what "it" was, Emmie had swallowed it whole. I kept an eye on her all afternoon, but cancelled with the vet. By 3 pm, she was looking at me to take her on a walk.
Funny how a little thing like this can happen to my dog, and I'm all over it calling for help and vets and even my husband at work. But when it comes to my RA, I usually try to make it a mind over matter, call my doctor only when it's gotten to the point of no return and feel bad about asking my husband -- or anyone else -- for help.
Maybe I'm just a stubborn, orenery West Virginian.
Or maybe admitting that things don't feel right, that I'm not, each and every day, altogether well is just relinquishing too much of myself to RA. Maybe it's a fear of losing my independence.
Emmie the beagle didn't seem to have any problem letting me know she was uncomfortable and wanted my help. Once again, I'm learning lessons from the dog.
I often wonder why I don't just ask for the help I need when I need it. Why does this seem like the most difficult thing to do?
Asking for help is different than feeling sorry for myself or wanting pity. I know this as an intellectual concept. But as an emotion, well, I'm still back to my old ways. It's tough to know the line, to when to grit your teeth and move ahead and when to say, please, a little assistance here.
I don't have a lot of wisdom here; I don't always take my own advice. I know that those of you who read my thoughts (and I certainly appreciate that a bunch!) may be wondering what I'm trying to say here. I'm not sure I know what I'm trying to say, expect sometimes it is easier for me to take immediate action for someone else than for myself. And that's not always a good thing.
At least Emmie's back to normal. She's taken over the Lay-z-boy chair.
Posted by renee at 6:22 PM | Comments (0) | TrackBack
September 16, 2004
Seasons
Today I saw the first tree turned its colors for autumn; it stood there in burnished copper leaves reminding me that the world moves in inevitable cycles.
For a minute I could relate -- the cycles of RA and feeling good and feeling poor -- that all things end and begin in their due time.
I've been thinking a lot lately what it means to write about this, to put these feelings as closely as I can into words. I've pondered on the facts of my condition: the days of swelling and the days of reprieve, the medicines, the fact that my life span will most likely be cut short 15-20%.
Sometimes I think we sleepwalk our days, we forget that --RA or not-- none of us are getting out of this life alive. What are we doing to make each one count? What am I doing -- I, that should be most aware -- to make each day something? And what should it be? Accomplishment? A creative act? Once again I find myself with more questions than answers, with more unknowns than knowns.
When I think about the fact that I may not live as long as everyone else, it's like that first autumn tree- the first to show its color. The lesson I think make it a blaze, make the life you've got a bright and beautiful thing, even if you're the first to shed your leaves. The late-harvest colors of golds and rusts and browns are lush with possibilities and I feel best when there is the crispness in the air.
I am quietly soothed by the fact that fall is coming. To all things, there is a season, but if one might be mine, I think it is autumn.
Posted by renee at 4:36 PM | Comments (0) | TrackBack
September 13, 2004
Putting The Big Bad Truth Out There
We were lying on my bed on a Saturday afternoon, watching a movie. My roommate was in the living room watching the University of Kentucky play basketball.
It's never easy to tell someone that you have RA. It just doesn't roll off the tongue, "hey, I've got this disease that makes my joints swell up and hurt and look ugly."
But sometimes you have to take that leap of faith and trust someone else. Trust that they won't leave, or think less of you. Trust that you're worth being around and that the RA won't change things.
Matt had his arm around me and we were just lying there when I opened my mouth and out came those words, "I have something to tell you."
In any relationship saying these words -- I have something to tell you -- can mean instant death to any future relationship. The represent some doomed and flawed you that you are going to share with another person, usually against your better judgment.
"Well," said Matt, "What is it?"
I began to think "it was fun while it lasted" but stopped. I really liked this guy and I thought he was sweet. He took me out to nice places and opened doors -- even the car door -- for me. On our first date, he asked before he kissed me goodnight.
"I have this thing called Rheumatoid Arthritis."
"Oh," he said. "What does that mean?"
"It means that sometimes my joints fill up with fluid and hurt. Sometimes it keeps me from walking normally. Sometimes I have trouble with my wrists."
There. The big bad truth was out there.
"What can you do about it?" he asked.
I started telling him about all the drug treatments, all the shots, all the Daypro and Celebrex. I found myself telling him about the doctor taking fluid off my knee with a syringe and following it up with cortisone. I found myself explaining what my joints sometimes looked like -- the misshapen lumps of fluid at the wrists and why my skirts always covered my knees.
He seemed to take it all in, after I kept babbling on and on about what it meant to have RA. Several times my brain said, "shut up, shut up you little fool, he's going to run for the hills and never look back." But something else inside me kept talking, a quiet pent up me that had never said anything to any guy about RA for fear of running him off.
It was quiet for a moment, after I finished. Matt turned and kissed my forehead. "I'm glad you told me," he said.
Last June, my husband, Matt, and I celebrated our third wedding anniversary.
Posted by renee at 2:12 PM | Comments (3) | TrackBack
September 9, 2004
Funny What Comes Out When You Just Start Talking
Since my RA support group only started meeting in June this year, the first two meetings felt stilted, more like meet and greet:
When were you diagnosed? Which Doctor? Hmmmm. Do we want to bring in any speakers? Oh, great.
Because of the Wine and Dine event put on by our local Arthritis Foundation chapter, we met on an off night. Only four of us could make it.
We met in a booth at a local Panera Bread. Typically we reserve the community room, but because we changed last minute, we had to make do. With only four of us there, it worked. It had more of a get-together feel: Dave ordered a salad, I got a green tea ice tea and a bagel. Joanna got there a little late because she was caught in a meeting at work and Jeff seemed to be more at ease sitting in a comfy booth rather than a wooden chair.
See, that's an RA thing- to notice someone likes a cushion-y booth rather than a hard chair.
But the power came in the talking. Not just the polite chatter of, I'm on Enbrel you're on Humira -- let’s compare, but "I never use the automatic handicap doors on my office building because I feel self-conscious about it."
Hey, wait a sec. I feel that way.
Or, 'when I have a flare up, it’s difficult to get my office door open.'
'I like the lever door handles opposed to knobs. Knobs are much harder to use on those days."
Yes, we talked about the mundane workings of doorknobs, how much pressure a knob will put on a swollen wrist as opposed to a lever, where you can use more of your body weight and have less twisting. But more importantly it was about the self-conscious aspect of it. I thought I was the only one who felt mortified over struggling with a door handle. I've wanted to talk about this kind of thing a million times. But with whom? Who else would know the joy that is a lever?
And then Dave asked about handicap parking. There have been times that I could barely move without the aid of a cane and yet I have never once inquired about a handicap sticker. I have always had the secret need to not be labeled handicap. And why? For pride? Ego?
Joanna and Jeff have never gotten one either. Dave has one he uses for the ice and snow. He's a little older than the rest of us and much wiser -- RA and winter freeze are a terrifying combination of trying not to fall and wondering if you will get up if you do. So why don't I get the sticker?
Only one of the four of us has. I am not the only one with this hang up.
And there is a power in this discussion because even though my thinking about getting a handicap sticker may be all warped by what I think it signifies, two other people think exactly like I do about it. Even Dave reserves it only for those days when the weather is bad. But we live with a chronic condition... why do we feel that we shouldn't use a handicap sticker?
Maybe it is for the same reason that I wear clothes that best mask the outward appearance of my RA. I wear skirts and pants that cover my knees, the joints that have taken the most visible beating from the disease. I almost never let people see them, see the way they look.
Maybe this is part of the way we cope, even if it is denial.
"You know what my pet peeve is," started Dave toward the end of our discussion. "When I see a car parked in a handicapped spot at the grocery store with the handicapped person sitting inside and the perfectly agile person jumping out of the car and into the store."
"Yeah," we all said back to him. And what we mean is, we're with you.
Posted by renee at 2:52 PM | Comments (0) | TrackBack
