Tuesday, August 16, 2011
RA - One Year Later
It's been a year since I was first diagnosed with rheumatoid arthritis. I guess the worst part of it came last week when I saw my rheumatologist and asked him, "So when do I get off the Methotrexate?" and he answered, "Never." What...the...hell?
After I picked my jaw up off the floor I reminded him that during my initial visit a year ago he claimed we could put the RA into remission by dosing me heavy with the horrible MTX. Was that just a ploy so I wouldn't feel "devasted" by my diagnosis and sink into deep depression? He countered some people do go into remission, but it's very rare. In order to qualify that someone is in remission, my RA level and inflammation level would have to be "normal" and I would have to be pain free for over a year. I am nowhere near that.
I finally stopped taking prednisone three weeks ago and the consequences of that action have enabled me to sleep better, but also have raised my inflammation and pain levels. It's a damned if you do, damned if you don't. And damned, I don't want to be on it anymore, so I am dealing with the pain as best as I can.
To look at me you wouldn't know I have this disease unless you could read something in my eyes, or notice I cannot open a jar without help. You wouldn't see my struggle to get out of bed some mornings, but my husband does. I try not to complain but he knows when I'm having a flare up. He's been very good with it, although it gets really annoying when he still asks me, "What can I do to help you?" There is nothing you can do to help me. It really irks me when he follows up with, "I could never imagine that you would get something like this." You don't have to "imagine" it, it's happened. "There's got to be something you can take."
There are no magic pain pills. I can't even take Tylenol because the MTX is hard on the liver and so is acetaminophen. And so far I've been "lucky" that my liver has been able to handle the MTX. I go for blood work every other month to make sure. It seems my pattern of taking the chemo pills on Monday and then waiting until Thursday evening to drink is working. I've pushed the envelope a little and allow myself to imbibe throughout the weekend, clearing out my body for 24 hours before the Monday MTX dosage. But I can't drink as much as before, and not only because of the potential liver damage. My blood counts are so low that my body reacts as if every drink is equal to two drinks. I know exactly how many glasses of wine I could tolerate. So far, so good.
Another side effect of taking a chemo medication is loss of hair. Lately I've noticed I've been losing more strands than usual. It could be a seasonal thing so I'm not going to panic, yet. If it happens I will buy a wig in every color and have fun with it. In the beginning, I used to keep a pain chart based on the weather, humidity, and barometric pressure, trying to determine if I could see a pattern. Once I realized even if I did find a common link I still wouldn't be able to do anything about it, I figured I was just wasting my time. And if there's one thing RA has taught me is that time is precious and not meant to be wasted.
When I say I don't have a year to spare I mean it. I live on the edge of wondering if today is the day I wake up and I'm rendered severely disabled. Yet, in my glorious belief in miracles, I know I can be cured. I believe in healing. Don't know when, don't know how, but do know life is meant to live now. Waiting for that "special" occasion to wear that "special" dress will only gather dust. Everyday is special.
Nope, I don't have a year to spare. And that's another reason I've decided not to go the traditional publishing route for my book. Too long to print. Deadlines? Yeah, I want to set my own. And that trip out West I've always dreamed about? That's happening next year. I don't want to drive a Hover-round along the Grand Canyon's rim. I'm hiking it. I'm taking a month to drive tothe West and visit all the locations I've always felt drawn to. No more waiting for the, "We'll go out West after -- insert parental obligation here -- is finished."
So, on this RA anniversary -- physically, I feel much better than I did one year ago when I thought I had bone cancer. RA sucks, but it's nothing I can't handle. There's much worse diseases out there. Mentally? Better than I felt a year ago. It's liberating when you give into your heart.