It’s Getting Better All The Time

It is so nice to feel like me again. I want to gig, I want to practice, I want to teach, I feel creative ideas coming at me faster than I can implement them, and it’s great. I used to get frustrated when I couldn’t do everything, now I’m grateful that I can do anything.

Yesterday I rode my bike for 13.35 miles. Maybe that doesn’t sound like much, and I averaged 9.5 miles per hour, but with the snow and ice I haven’t been on my bike for about three months. That ride I went 15 miles, so pretty good for not having been out. Come to think of it, I had to walk through ice a few times, so maybe that’s what dropped my mph. And then today I went to yoga class. I went last week too, and I’m proud that I was able to get through the whole hour. I did all the poses and didn’t have to rest. Last week I did skip a few sun salutes to catch my breath, but I made it through more than I expected.

It’s so nice to be able to do these things. A year ago I could barely walk. I would say to myself, “I can sit here the rest of my life, or I can get up.” That’s how I got myself out of bed, off the john, or to the john. The choice of staying on the john for the rest of my life was so absurd I had no choice but to get up. Not to mention we have only one bathroom.

I’m a little bummed that I’m scheduled to go down a milligram of prednisone this week, so this feeling terrific is temporary. I keep telling myself that I will get back to feeling this good, but I’ll have to spend a couple weeks being stiff and sore again. Maybe it won’t be so bad since I’m in better shape now than the last time I went down a mg. The goal is to get off prednisone altogether. My goal is to get off all meds and not have lupus anymore.

I’m trying to not think about the goal though, and think about where I am now. Instead of focusing on climbing the mountain, I’m looking at all the trees.

So where was I in my little story.

The next med was an immuno suppressant, which I didn’t like the idea of AT ALL. I really didn’t want to take it, but the choice was clear. Continue to feel this awful, or maybe feel better. I knew I couldn’t keep going like I was, so now I was taking methetrexate, which is a chemotherapy drug used to treat some cancers. Just like the last drug, I felt like it was getting a little better, but at my next appointment the doc wasn’t satisfied with my progress.

One hears so much about doctors who don’t listen to your complaints, or who assume that since you’re on the right drug things are getting better, or a patient’s frustration at being misdiagnosed. I didn’t have any of that. I always thought I was getting better, but he wasn’t happy with my progress. I realize now that I probably should have been more vocal about some of my weirder symptoms, but I was so scared that he’d tell me I have something awful that I wasn’t as communicative as I could’ve been. That might sound like me making excuses for him, but I didn’t tell him about the muscle fatigue, and I mentioned the foot feeling like it was going to sleep while I walked and he didn’t really have an answer for that. I started getting episodes where my fingers would turn dead white and lose all sensation. It’s called Renaud’s Syndrome, and apparently it’s common with lupus patients. I mentioned it, he identified it, and that was the end of it. My left foot developed this sensation like it’s been shot full of novocain, the surface has no feeling but there’s feeling deeper in. I still don’t know what the hell that is. I’ve learned to live with it. I mentioned my weight loss, the assistant said “good for you!” and that was it.

About the time I started the methetrexate I started to lose my appetite. I couldn’t eat much of anything. Most times I was simply too tired to eat. Many times I would lose my appetite in the middle of dinner. We would go out to eat because I couldn’t cook and I would order food and then not eat any of it. Once all I ate as the fruit garnish. I started dropping weight. At first, I was okay with it, I’d wanted to lose those ten extra pounds you put on when you turn 40. But it just kept on coming off, and I couldn’t make myself eat. I got to the point where I was eating whatever awful junk food I wanted, just to get some calories. I lost 25 pounds altogether, I was the weight I was in eighth grade. Too bad I don’t still have those jeans.

I think I’ll always remember the day that I went to the emergency room, May 1, 2009. All week I’d been having pains when I breathed, I went to the chiropractor for the first time to get adjusted, I had massages, I had Tom try to crack my back. It felt like when you have a rib that’s gotten out of place, and cracking your back or a back rub takes care of it. It eventually got so bad that I thought maybe my lung had collapsed. Tom had that happen twenty years ago, so I knew it could happen, and at this point I didn’t know what might go wrong. That morning Tom took me to the ER, and it felt like I had broken my ribs. The pain was excruciating. He had to avoid driving over every bump in the road because it would hurt if he drove over a manhole cover. Man, that was bad, I don’t think I’ve ever experienced pain like that.

We spent seven hours in the ER. They gave me fentanyl, the drug that all those nurses have gotten busted for stealing. What a great drug! It felt like I’d had about six margaritias. They told me that I probably had a pulmonary embolism, which after watching all sorts of people on T.V’s ER die from that it really freaked me out. They took me to do a CAT scan, and it only showed a little pneumonia in my right lung. Then they decided it was probably gallstones, they did an ultrasound, confirmed the gallstones, and we started talking surgery. They wanted the expert to confirm the gallstones, but they were sure. The expert, who reads ultrasounds all day every day, saw nothing. Never mind. No gallstones. They finally decided that I had pneumonia and pleurisy, which is inflammation of the lining of the lung. They sent me home with percocets and antibiotics.

So now, on top of not being able to move, I couldn’t breathe, either. It hurt to take a breath, it hurt to lie down, it hurt to get up, it hurt to walk, to sit, to be. I had thought things couldn’t get worse!