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July 15, 2004

Don't Go It Alone

Last night I had dinner with two friends, Joanna, a fellow RA patient and Allyson, who introduced us.  I met Allyson when she was Director of Volunteers for the local chapter of the Arthritis Foundation.

 
Joanna was diagnosed with RA as a child, and probably has a much, if not more, of a never say die attitude than I do.  Even on those days that aren't so good, she has a smiling, fresh face.  I value her friendship because she is the first person I've felt completely comfortable talking to about RA.  People don't seem to associate the condition with people in their 20s or 30s (or, children, for that matter).  I can talk with Joanna about things like dealing with RA while thinking about raising a family, or how to balance career and the pain and fatigue that are inevitable with the condition.  And it doesn't slide into a big, "woe is me, woe is you" session.
 
It becomes a, "what looks yummy for dinner,"session (of course for me, without potatoes!).   And then a normal get-together between friends. 
 

Allyson is one of the easiest people to be around.  I can see why she worked with volunteers!  She tries to bring people like Joanna and me together so that we're not alone.  When you're dealing with a condition like RA, you should never go it alone.
 
Recently a couple of other RA patients started a local a support group.  We meet once a month -- both Joanna and I go to meetings, with about 4 others.  We are trying to get the word out and grow.  Having a group to talk to, I hope, will become another resource, not just for me, but all the others involved.  

 
As the poet John Donne wrote, "No man is an island."  It's helpful to remember when you have RA.  Connecting with others -- on websites, in support groups or through friendships is vitally important to dealing with this condition. 

Posted by renee at 2:40 PM | Comments (3) | TrackBack

July 10, 2004

Please, Don't Pass the Potatoes

People often ask me how R.A. has changed my life. I sigh. Where to begin?

Here's one of those little things that I've changed in my life. I don't eat potatoes. Yep, that's right. Now I've only lived a spud-free existence for a couple of months. Why have I suddenly turned my back on the pomme de terre? Simple- when I eat them, my joints swell up.

RA has been linked to food allergies, and for me this includes potatoes. I thought giving up the spud would be quite a task. Who can say no to golden, delicious fries? A round of 'tater skins for appetizers? Hash browns with that perfect omelet? And chips!?! Who can live without chips?

Me.

I think it was discipline to begin with, but as I started to feel better, I didn't miss the chips, hash browns, fries and the rest. I happily substitute onion rings.

It seems to me that most people with a condition like R.A. are looking for one big sacrifice or huge thing they do once to help them. But it's the hundred of little things you do each day that make the big difference. That's not what people want to hear, but it's true.

Others say, "You're just a strong person," or "Discipline comes easily to you." I find these statements a little discouraging... I'm sometimes a strong person, but have my share of doubts and fears, failure or fatigue. I cry sometimes, I laugh other times. And discipline is never easy, but it's a choice. Not really easy, but a choice, something I have control over.

The choice for me is this: discipline is difficult, but it sure beats the alternative of feeling miserable day after day. (And just wait until I write about exercise!)

So, friends, family, please don't be offended when I say, "Please don't pass the potatoes."

Posted by renee at 11:49 AM | Comments (0) | TrackBack

July 6, 2004

And Now a Thought About Needles

One of the things that you just have to get used to with RA is all the needles. Most people have a healthy fear of needles, which is reasonable. I mean, who wants to pierce themselves with a sharp, shiny object, in say, the thigh or the stomach?

For me, it was no big deal when someone else gave me a shot... like, say, the nurse or other trained health professional. I'm okay with taking blood, or any other routine thing. Even when my rheumatologist stuck a needle into my knee joint to pull out fluid. (Okay, that one was a little scary, but with my looking away and his engaging me in conversations about books -- I love books -- we got through it no problem.) What changed my relationship with ye olde syringe was a therapy for RA patients called Enbrel (http://www.enbrel.com/index.jsp).

For me, Enbrel has been a sort of wonder drug. After just a short time on the medication, I started to feel better. My husband noticed I was more upbeat and up to doing more things. My family and friends didn't think I was cranky from RA fatigue. Now, Enbrel will not work for all RA patients and work with different levels of success. But for me, Enbrel is the ticket.

With one minor exception. Twice weekly shots.

As I explained earlier, I wasn't so much afraid of shots until I was the one giving them. Plunging the needle into myself was a pretty freaky, wacky thing for me to imagine myself doing. The first time, my leg shook spasmically, as if it weren't attached to the rest of my body. Then, the hand that was to deliver the shot shook in a similar manner, until it seemed I would not be able to coordinate the effort of these two limbs to get this medication. And this was with the nurse right there. What the heck would I do when I had to do this at home, alone?

Here is the thing I have learned about shots. The better you feel, the easier it is to give yourself the injection. Also, it's never as bad as you think it is going to be.

After the first time, with the nurse's hand on top of mine, when the needle had actually punctured the skin (it only has to be subcutaneous, or just under the skin) and gone in, my words were (I kid you not) "That's it?"

I've been giving myself injections for over a year now. Although my husband still turns a little white at the prospect, since, unlike me, he still has a healthy fear of needles. At first, I rewarded myself with little things, like a piece of chocolate, for getting through another injection. But now, and I kind of hesitate to say it because it is a little weird to admit, but the shots seem rather ordinary, routine. Sure, I would give them up in a minute if there was an easier way.

But for the moment, as I work on keeping my RA under control, and if the Enbrel continues to work (knock on wood!) the needles and I continue to get along okay.

Posted by renee at 2:43 PM | Comments (0) | TrackBack

July 4, 2004

Intro To My Life With RA

When people ask me what Rheumatoid Arthritis (RA) is like, I'm sometimes stumped to explain to them in terms that they would understand. I don't mean this as if people couldn't understand, just that sometimes the right words fail me.

I suppose that RA is a lot like the ocean having tides. Sometimes it's low tide and the water gently laps the shore. Not too much sand is eroded away, and the beach reveals its treasures: shells, coral, the occasional hermit crab scurrying around. Things are calm. Then the tides shift and come in. The waves hit the shore more aggressively, taking more of the beach away into the ocean. Water begins to cover the spots that were previously in the sun. This is kind of how it feels when the joints in your body start to swell from RA.

I was diagnosed with RA in my early 20s, although I had symptoms before that... I just didn't know what it was. It was a shock to learn what was happening to me. That's putting it pretty clinically. I really went through the gamut of emotions: grief, anger, frustration, sadness, fear, and finally acceptance. Acceptance came only after I realized an essential truth, my life was not over.

RA can make life different. But since I adopted a "never give in" attitude about it, I don't feel like I've given up. Maybe that's the most important part.

As way of introduction, this is pretty short and sweet, and a little, well, introduction-ish. My goal is to write about living with RA, and about how to get past the things that would otherwise limit me. And I hope that others with RA can relate or get ideas for their own life. If you let RA limit your life, it will. But then again, I watch others limit their lives with a whole host of other things. We all have our problems, our crosses to bear. It's in the how we do it that makes the biggest difference between giving up or not.

My name is Renee, which in French means "reborn." I've been trying to live up to it.

Posted by renee at 11:12 AM | Comments (0) | TrackBack