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August 31, 2004
Thoughts on the Arthritis Foundation Wine and Dine
A woman who looks vaguely like Jenny McCarthy shuffles through the crowd lead by a rather handsome man who gives the impression that he is more handsome because of the girl accompanying him. As they walk between items displayed for the silent auction, they look horrendously bored, occasionally swirling and sipping from wine glasses etched with the word "Celebrex."
I was on Celebrex for a time.
A woman comes in dressed in a long red gown. Behind her, a man in a sharp sportscost, jeans and loafers. Around the room are tables set up with warmers of food or bottles of wine, people gather in helter-skelter lines, waiting for a miniature chicken wrap or a taste of Beaujolais. Except for the friend I came here with, I don't know anyone. I don't recognize anyone. It amazes me that I can live in a town for almost ten years and when I go out I do not recognize anyone. There are hundreds of people here.
I feel I have a secret. The people around me don't know it but they are here for me.
I'm only 31, which really doesn't seem or feel that old, but tonight I do feel old, maybe older than I conceive of myself. There are tables with placards for law firms and radio stations and it seems like the people around them are young, junior staff, very alive and vibrant. It's Thursday night, eight-ish and if these people weren't here I'd imagine they'd be at swank bars, sipping martini cocktails. And who could blame them?
I kind of feel like a fly on the wall, watching. My friend has gone up to a table that has a chocolate fountain; I'm holding our seats. We both have rheumatoid arthritis, but no one knows that, except for the few familiar faces we encounter. And even if the others knew I don't know if it would register. The thing is I'm not really sure I care if they do or not.
The guy with the Jenny McCarthy look-alike guides her to another wine table with his hand at the small of her back. She has pointed to things and he dutifully leans over the table, writing on the silent auction bid sheets with a Mont Blanc pen.
I have a Mont Blanc pen that was a gift from my dad.
A friendly -- if not a little drunk -- woman starts a conversation. She is sweet and relaxed from wine, here on a date. The man seems to be a new one, an early budding relationship and the two are very charming in their new togetherness. I tell them that I have arthritis and she seems pleased that I tell her. I've let her in on a secret. I find out that she's originally from Ravenswood, West Virginia, which is near the place my family is from. I should have known by the friendliness that she was a West Virginian, because as a general rule, we're a friendly lot. The friend I've come with is surprised that I just told this woman, a total stranger, that I'm attending this Wine and Dine event because I live with RA. I'm a little surprised myself. This woman from Ravenswood is the only stranger I had a conversation with that is someone I don't know.
My husband is always telling me that I should just tell people about my RA, that nobody will think differently of me because of it. I think having RA makes you more aware of it, how others see you because of it.
I don't know if the lovely people of Columbus, many which seem to be here, care or not, and I'm not sure that it matters. If they are going to spend their money, why not for this cause, why not for something that could help.
At my table I wait for my friend to return with her plate of chocolate. I'm comfortable waiting alone, watching the flow of people, holding a secret that I'm all too willing to share if someone would happen to ask.
Posted by renee at 4:39 PM | Comments (0) | TrackBack
August 22, 2004
When Tired Is An Everyday Feeling
One of the worst parts of RA, in my opinion, is those times when fatigue takes over. It's beyond being just tired: it is a day after day sack saddled to you, it is the feeling that you'll never again have a spring in your step, that you can never get any rest from sleep.
If Dante had RA he would certainly have created the fatigue ring of hell in The Inferno.
In some ways, I can deal with the pain and swelling better than the fatigue. Maybe because the fatigue seems less real to me. Swelling is apparent. Pain is usually preceded by swelling. Fatigue feels like it should be a mind over matter thing. But it isn't.
One of the struggles with fatigue is that our society has no patience. Not just a lack of patience for those of us dealing with conditions that include fatigue -- our society is all about movement, quickness, the fast lane, instant gratification. There is little time for stillness and no appreciation for it. A friend of mine recently told me that that feeling "still" makes her anxious. "I feel stagnant," she said. "Maybe that's why I have no patience."
Hmmmm...
I have yet to figure out a true strategy for dealing with fatigue. The blessing is that when it comes it also goes; and in between the times that it wanes, I try everything in my power not to feel that way again.
I've also thought a lot about the phrase, "taking time out for me," since I was diagnosed. It is as if we place so much importance on movement in our life, the so-called rat race, that stillness and reflection have become this sort of afterthought. I sometimes wonder if RA is some sort of lesson for me in patience and acceptance, and if fatigue is my lesson in stillness and slowness. I guess this is a little philosophical, but I suppose that being more philosophical, or at least looking past the surface of the situation is one of those things I've done to deal with RA.
Two years ago I walked only with the help of a cane. People shook their head, and said things like, "such as shame," and "what a pity." I decided I hated that and worked so that I wouldn't have to walk with the cane. But should their be pity or shame in this condition? Really? I just can't bring myself to come to believe that.
This is one of those things where I haven't reached conclusions, only gotten clearer about the questions. I think I can accept that there will be times when tiredness is an everyday feeling, and maybe try harder, or better, to pay attention.
Posted by renee at 12:17 PM | Comments (0) | TrackBack
August 18, 2004
What I've learned from Emmie the beagle...
Emmie was most likely abused. When we got her, she was very shy and took a long time to warm up to people. Most of the time she curled into a little ball and slept. She'd been shuffled around from place to place, stuck in the pound and various foster homes for rescue dogs. Someone had even taken her in for a while but given her back to the rescue.
This once orphaned little girl is now the most popular dog on the block. The neighbor down the street always comes out with a treat for her when she sees Matt or I walking her. My neighbor Jack stops by just to pet her. Joan, my next door neighbor wants to borrow her to chase bunnies from the tomatoes she's growing. Even my parents stop by "just to visit the dog."
All Emmie ever needed was a little love.
And maybe that's all we need to be better. I'm not saying that love alone gets us through a painful day of RA. But having her snuggle up to me when I'm feeling fatigued or my joints are swelling makes it a little bit more bearable. Every ounce of love that I've put into my 16 pound, eleven inch dog, she gives back twice over. It is the thing that helps me get through what I don't think I can get through.
Emmie loves to be around people -- she is patient with kids and affectionate with adults. And except when she sees a rabbit, she hardly ever barks or howls, which is unusual for the breed.
She's the perfect example for the power of a second chance (or third, or fourth...). I've got to believe in second chances. Any of you who regularly read my thoughts here, you already know that I trained as a classical ballet dancer. So, RA really hit me hard. Even just getting diagnosed was an issue -- my condition went undiagnosed for several years because the pain was mistakenly considered, both by me and my doctors, as dance-related injuries. Only when the swelling became apparent in multiple joints did I get the blood test that showed an RA Factor. That period of time, and the time after I was diagnosed was a real transition.
But during that transition I found out something very important about myself. I love to write. And, I might have a bit of talent at it too. I earned an undergraduate degree in creative writing, and even was given a scholarship. Next year I will start the Masters of Fine Arts in Creative Writing at West Virginia University with a graduate teaching assistantship.
I might never have pursued writing if I didn't have RA. Writing is my second chance.
So Emmie and I are alike -- in some ways we're cast offs, rescues -- we need that little extra bit of love. During the day when I write, she sits by the edge of my desk, and when I need a break, she comes over to my chair to be petted.
Posted by renee at 1:32 PM | Comments (0) | TrackBack
August 13, 2004
The Exercise Entry
As promised (threatened) here is the blog on exercise. And I'd like to thank Shelly, another blogger about RA, for asking the questions that inspired this entry. Make sure to check out her thoughts on RA here at healthdiaries.com.
Now, on the exercise:
There is something you must know about me before we continue. I spent most of my early life studying classical ballet. A ballet background gives you a very high level of discipline from a very young age. Even though the ballet is gone, the discipline is not.
So, when I was diagnosed with RA, not exercising was like saying, "Stop breathing." It was not an option for me. Determined to exercise, I worked with my rheumatologist and others to figure out what would work for me.
I started exercising by attending Arthritis Aquatics, a warm water based program developed through the Arthritis Foundation. If you want information about water exercise programs, contact your local AF chapter, which should have information on these kind of programs.
Arthritis Aquatics is based on the principles that your body needs exercise but not stress on the joints. The focus is on increasing mobility. This is critical for anyone with RA who is beginning an exercise program. The water allows you to move without putting stress on your joints because your body is more buoyant in water than out of water. Think of it is alienating your body's weight from your body.
I started going to Arthritis Aquatics twice a week, and the better I felt the more I increased the amount of times per week I went until I was up to 5 days a week.
An important thing to remember about any exercise program, but especially an RA exercise program is to start with a manageable amount. So, if you haven't exercised in a long time, do not set out to work out daily. Go twice a week for a month or two and see how that goes.
Another thing to be aware of is that if you first start an exercise program you will experiences some soreness. There is a fine line between the soreness your body will feel after exercise and the pain of doing something that is not good for it. A good way to tell the difference is if your experience general tiredness in the muscles or joints versus feeling sharp shooting pain. If you feel sharp, shooting pain, stop and consult your doctor.
After I had worked up to every day in the pool, I worked up to exercise outside of the pool. Now, I work out by circuit training. I use exercise machines, but these machines are specifically designed to be used by people like me -- they are built using s system of hydraulics instead of actual weights, and are often used by physical therapists. Again, this was a transition that I did by easing into it -- two days on the circuit, three days in the pool until now where I'm five days on the circuit and in the pool to augment what I'm doing. It has taken me several years to get to this level. Committing to this exercise plan has been a long range goal, and I caution people to set realistic and long term goals. Be in it for the long haul.
Even if you can just do the twice a week in the pool, as I did when I started out, I think you will feel some short term benefits. One is psychological. It is the feeling of yes, I can exercise. But also, the body produces endorphins when exercising, and this too, will make you feel better before you see other physical results. I recommend keeping a log of when you exercise. If you feel down about it, go back and see how you have committed to it. If you have not achieved what you want, then refocus your efforts.
Also, recognize that exercise is not easy, not even for people without a limiting factor like RA. Recognize that by doing something that you are doing more than what most people would do.
Reward yourself for short term goals. If your goal is to go twice a week for a month and you achieve it, reward yourself with something that will keep you motivated. I asked my husband to take me to my favorite restaurant to celebrate hitting different milestones.
Finally, find someone to help be your exercise champion. For me, this was my father. He is a dedicated runner and exerciser himself. He praised me for setting and hitting realistic goals, which was critical. When I felt down and out or unmotivated, he helped me to get the motivation to get back on track. He didn't push me to do what I could not do, but to commit to what I could. Find someone who is positive and has your best interest at heart.
And, if you are feeling really motivated, post your goals here and updates on your progress!
People always ask me if I am sad about not being able to dance anymore. Of course I am. But, I think the thing that has made a difference for me is I don't beat myself up over it. It is something about my past that I'm very proud of, but I recognize too, that now I am a different person with new challenges and goals.
Posted by renee at 7:45 AM | Comments (2) | TrackBack
