Main » October 2004
October 27, 2004
Treatment?
It's just a small white pill, smaller than a vitamin or aspirin, almost barely there. But prednisone is making a deal with the devil. On the one hand, it does what it is supposed to do -- it decreases swelling in joints that are wrecked with RA inflammation. But then it exacts its toll -- depression, mood swings, insomnia.
I've never been on it for more than a couple weeks, carefully tapered and managed. The physical benefits are clear -- ease of movement, reduced swelling and pain. But at a price -- the price of my personality. And I wonder if the price is worth it?
There are those who say that it's all in my head, that a little man-made steroid couldn't possibly have this kind of effect. They say, "you're paranoid" and shake their heads. Then there are my loved ones who will exhaust every other possibility before saying, "yes, Ren, maybe you do need it." My husband winces, my parents shudder. Prednisone. I turn from Dr. Jekyll to Mr. Hyde.
After having the 32 mL of fluid taken off my knee, my doctor wrote me a prescription just in case I needed it. I've been trying to beg off using it because it makes me feel crazy -- crazy and out of control.
So when do you make the deal and decide it is time? You hurt and swell and it's hard to move. But you feel relatively happy, or at least in control of your own emotions. The small vial of prednisone is sitting in my bathroom, ready and waiting, but I just pray that I don't need it. I don't want to need it, even more than I want to feel better physically, I think. I want to be able to deal with the world. And prednisone doesn't allow me to do that.
Since the fluid was drained off, I've been getting around pretty well. So the prednisone stays in it's vial behind a childproof cap. Maybe it would crack open if I'm desperate for relief, but what relief would I be getting? The choice of one kind at the expense of another. While I still have choice, I don't want it. Choice. It's such a wonderful thing that we take for granted.
Posted by renee at 1:27 PM | Comments (1) | TrackBack
October 19, 2004
32 mL of fluid. This
32 mL of fluid. This is what my rheumatologist drained off my right knee today.
Tomorrow I get on a plane for Savannah, GA to attend my brother's wedding. My right knee had been on-again, off-again for the last week or so but this morning is was just too painful and swollen. I called my doctor’s office:
"This is Renee Nicholson. I hate to bother you, but I'm supposed to fly to Savannah, Georgia tomorrow for my brother's wedding and my knee is swelling. It's about the size of a grapefruit. I was calling to see if there is anything I can do or take to help with that."
I finished the call with my return number and hung up. I thought, "Wow, this is going to be something." Maybe I'd just have to lug my knee around town and limp about at the wedding. "Hi, I'm Renee, and I'm a little gimpy." At least it would be conversation.
Kathy, my doctor's nurse, called back and got me in for a 3 pm appointment. I love my doctor's office for this reason. They always seem to be able to help me in a pinch. I think this is something rare among doctor's offices.
When I got in the examination room, one look from my rheumatologist and we knew it was needle time.
"You haven't taken up any new hobbies like Roller Blading or Soccer, have you?" Dr. Hedrick always knows how to get a smile out of me even when he has to stick a needle in my joint and suck out the bad stuff.
Ironically, my friend Tim recently broke his collar bone and some ribs playing soccer. We had just talked about it earlier this morning.
Propped up on the exam table I pushed my pant leg up way over my knee (the joy of wide leg pants!). Under my knee, the nurse put a pillow with a towel taped over it. Then is the preparation for the needle to go into my knee – rusty colored stuff smeared on my skin, then clear stuff, then the stuff that is so freezing cold that it tickles.
The worst of it is when the needle first enters. I know that if I get past that part, the rest is down hill. But the fluid coming off is a weird mixture of pain and relief. As it comes off, it's like muscle soreness or stiffness or spasms but the joint eases and relaxes as the pressure is released. 32 mL is the most I've ever had drained.
After the fluid is drawn I get a quick injection of cortisone.
Considering the build up of the whole thing in my mind, it seems a little anticlimactic to only have a band-aid over the area where the needles poked into the joint. It seems like such a to-do when it is happening, but the evidence afterward is small. The relief, however, is fantastic. At first the knee is shaky and I have to watch the amount I do and just sit and relax a while. But then it is easier to move around, even easier to sit and relax.
Tomorrow I will get on a plan for Savannah as if none of this even happened. I hope my brother appreciates it though – his sister being mobile for his wedding. I've got a prescription of prednisone, just in case, and a shot of Enbrel in the morning (I'm so thankful for small, subcutaneous needles – how easy in comparison).
Anyway, I'll be on a mini-hiatus until I return from Savannah.
But, when I return, I'll let you know if I make it to the Clary Cafe of Midnight in the Garden of Good and Evil fame!
Posted by renee at 1:20 PM | Comments (5) | TrackBack
October 12, 2004
October
I love October.
It's still nearing 70 degrees today, but the trees have started in earnest to turn. Some are dusted with the color to come, red peeking through the skin of leaves like a soft blush or rash, others in full color, golds and reds against the blue sky.
Even though my right knee has been bothering me, been achy and swollen, it hasn't gotten me down. The glorious fall days are just too much to take in to let me knee get in the way. So much color!
Emmie likes to crash through the piles of leaves on our walks. It must be a good thing to be a dog.
I just love October.
This weekend my husband and I had to take our cars in to get maintenance and even that didn't diminish the feeling that autumn instills in me. I noticed the big orange pumpkins being sold in front of groceries and schools and churches. I thought of the glee a child takes in pulling out the pulpy insides and carving a face, roasting the seeds. I felt the warmth of a cup of coffee.
It would be easier for me to think about my RA, my swollen knee, but it certainly wouldn't be better. The world has a wonderful capacity to fill you up, if you let it.
Posted by renee at 11:52 AM | Comments (0) | TrackBack
October 4, 2004
Waiting?
"Some people aren't afraid to die," says Matt.
"I'm not afraid to die," I answer.
It's true. It's something I've thought about and I'm not afraid to die. It's different than wanting to die, I'm certainly not wanting to die any time soon. But I've come to the belief that my time is my time.
Matt and I get on this topic, as we do many, as a tangent. Something said to something said about something else and an oh by the way.
My cousin Donald, who is really my granddad's cousin (after his favorite cousin and friend, Addison, my granddad, passed away he said I should take his place as his favorite cousin) said that our Aunt Carrie died around 99. Some of the "old" family lived to be well over a hundred. But they never were feeble. They pretty much got around and did chores and stayed active and then one day expired. Work on Friday, pray on Sunday, die on Tuesday. Not a bad formula.
When I was a teenager I thought about death in a sort of adolescent fascination that included lots of poets -- from John Donne to Matthew Arnold to Sylvia Plath -- and other writers -- Albert Camus and Ernest Hemingway. "Lady Lazarus" and "The Short Happy Life of Francis Macomber" were more than just English class assignments.
And Edgar Allen Poe! The man obsessed with the deaths of beautiful young women. Cried the Raven, "Nevermore!" And all that jazz.
Once I got to college, I thought a lot less about death and whole lot about what was happening in the here and now: parties, homework, late night runs to Steak N' Shake for the chocolate shake with the cookie on the side (how much did you love 24 hour restaurants in college?).
It wasn't until after I was diagnosed with RA that I thought about my own mortality. First, my body was failing me, big time, in swift, hard strokes to my knees, ankles, wrists and elbows. I was tired. I was poked week after week with injections -- at the time gold shots -- in the hopes my body would be re-jump started. This got me thinking about dying. Not that I wanted to, but how fast and far the body can fall.
Then I read the mortality rates for RA patients. 20% less life than the average person. Not exactly something you would want to do cartwheels over, if you could still do cartwheels.
Okay, as Shakespeare said in one of his plays, here's the rub. You can focus on the 20% less part and make every day miserable thinking about how your not going to live as long as everyone else.
Or, you can make up your mind that quality is really much more important than quantity and that if you have something important to do, you better the heck do it now.
In my case, I decided to write. Writing, to most folks, is this thing that seems like a cool thing to do. You put words on paper and people read them and you put down more and they read more. Only the words have to be put together in a way that makes them interesting or beautiful or profound or stark… basically, a really hard thing to do. Then, there's the rejection. Writers get a heck of a lot more rejection than acceptance.
One literary magazine I know of gets 40,000 submissions a year and accepts about 1% of them.
So why write if you've got a short leash on life and the profession is full of rejection?
For me, it's about the process. It's about figuring out what and how to say something. It's about imagination and worlds. It just about the doing it part. The acceptance and rejections are just two of many results of writing.
And, while it may frustrate me or be difficult to say exactly what I want to say it is also the one thing that makes me the most happy in the world. It makes me present in the moment. I'm defined by what I do, not by the fact that I have RA. I am not my disease.
I don't know why people don't try to do what they really want to do. Does it take learning your life could be cut short by 20% to get motivated? Maybe. But there are no guarantees about anything. Not in the world before RA, not after after, not ever.
So what are we waiting for?
Posted by renee at 7:20 PM | Comments (0) | TrackBack
October 1, 2004
And Now A Message From Emmie, the RA Spokes-Beagle
This week has been a banner week for me -- several people have commented on reading "Life With RA" and this feedback makes me so excited and humbled. Every writer, I think, secretly wonders if their work is ever read. Hearing from friends, colleagues, fellow RA patients, family, friends of family… it has truly been a blessing and an honor to know you are all out there reading.
The number one thing people mention to me? Why, of course, it's Emmie the Beagle. I'm thinking she has become Emmie the RA Spokes-beagle. And with a face like hers, who can resist?
This week Emmie and I have a full plate. Well, she still falls asleep on her pillow by the sliding glass door of my office while I punch at the keyboard. The reason I've been so busy was due to the fact that this week I attended my first Arthritis Advocacy meeting.
Dictionary.com defined advocacy as: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. After attending this meeting, my belief is that "active support" is the most important component of advocacy.
Nick from the Arthritis Foundation got us together at the Columbus Metropolitan Library. From what I've been told, he recently earned a masters degree and he looked ever bit the part of a scholar: new squared glasses, camel-colored corduroy blazer and red tie. He knows a ton of facts about arthritis and rheumatic diseases, but more importantly, he was just itching to get in front of Congressmen and women and Senators to advocate on behalf of all the men, women and children in Central Ohio that have these conditions. The most important thing, right now, is that our lawmakers, Republican and Democratic alike, know about the first piece of legislation in 30-years geared toward those of us that suffer from arthritis or related diseases: Arthritis Prevention, Control and Cure Act of 2004.
I think it is important, during this election year, to point out that this legislation is bi-partisan.
Nick, who has the enthusiasm of a boy getting ready to trick-or-treat when it comes to advocacy of arthritis, suggested to me that I write about this issue here. Of course, he mentioned this to me after he mentioned that he had read all about Emmie the beagle.
So, I'm taking his advice. If you're concerned about RA, or other related diseases, if you have friends or family that have been affected, or if you want to make a difference in health policy, I urge you to become involved - become an advocate.
Okay, so what does that mean?
Remember that part of the definition of advocacy is "active support." An easy way to lend active support is to go to http://www.arthritis.org/ and along the top toolbar, click on the tab marked "Advocacy." This takes you to some interactive tools that allow you to write your legislators about the Arthritis Prevention, Control and Cure Act of 2004. It can create an email or letter for you that you can send to your representatives in the House and Senate.
I've sent emails from the site and am crafting a personal letter to my Congresswoman, who happens live in the same area I do. Who knows, maybe I'll take Emmie the Spokes-beagle on a walk past her house. Who couldn't be swayed by those big brown puppy eyes?
My friend Joanna got me involved with advocacy. She's the volunteer leader of the advocacy committee and also an RA patient like me. She is definitely not the kind of person who sits on her laurels when it comes to being involved with things that can positively affect RA, RA research and day-to-day issues that impact patients. In fact, this year, I believe, will be her tenth year of having a team for the Jingle Bell Run, an event that raises money each year for the Arthritis Foundation (more on this in upcoming musings). What Joanna helps me to do is focus on those things that are active, that can make a difference for us. Advocacy must come from those of us who struggle with the condition. Positive changes and awareness is effected by me, and her, and anyone else who stands up and tells their stories.
Another member of the committee that I must mention is Dr. Gloria Higgins, a pediatric rheumatologist at Children's Hospital. She told me something that was completely staggering -that there are over 500 cases of JRA and related rheumatic diseases in children in Central Ohio - more than juvenile diabetes or cystic fibrosis, which tend to get a lot more media coverage. Many more children never get diagnosed or don't see disease-specific health professionals. Dr. Higgins, a fellow West Virginian (Joanna says I can spot a fellow West Virginian anywhere), is a slight woman with a kind face and a passion for helping kids with rheumatic disease. What would bring Dr. Higgins great satisfaction would be a fellow in pediatric rheumatology at Children's. Because they are understaffed currently and because research is vital, this position could be a huge benefit. But like most other institutions, budgets are tight and internal politics are not in favor of a fellow being established. It also wouldn't make money for the hospital. With a stipend for the fellow and related costs, the position would require an investment of under $100,000.
I'll see if I can get Emmie the Spokes-beagle to add that to her busy agenda. Right now, she's sunning herself in a shaft of light fromthe sliding door, so it will have to be tabled until such time as delicious treats can be established.
I'll say one thing for our favorite hound; it's good to be a celebrity.
Posted by renee at 7:08 AM | Comments (0) | TrackBack
