Saturday, March 27, 2010

Everything's gonna be fine, fine, fine

I’ve made a discovery.

Sitting around feeling crappy makes me feel crappy.

If I feel crappy, get up and do something. Might as well be productive and feel crappy. If I Still feel crappy after an hour, take a nap. At least I tried.

March 27, 2010

It’s been a lot of up and down lately. Really up, like running up and down the stairs up, and really down, like needing to be helped up the front stoop. At least the bad days don’t last very long. I wonder if those are the “flares” I hear about. So far they haven’t lasted more than about four days and then I feel pretty good again. I was supposed to go to no prednisone, but at the time I was supposed to do that I was really sore, so I didn’t. Then I got pretty good, and I thought maybe I should do it, and then I got sore again. I keep trying to figure out what it is that makes me sore, and the common denominator always seems to be stress. So now I’m trying to let go of Ego, that part of you that tells you that you don’t measure up, you should’ve done it the other way, that’s not good enough. I find that when I can let go of Ego I feel better. Most of the time the pain comes when I have to be around my family. I love them, but they’re the source of my never quite measuring up.

So, after my little ER visit, I went home with percocets and tried to breathe. It’s interesting, if you can’t get enough air in your lungs a sneeze just goes away. I didn’t sneeze for three months. I still don’t always sneeze when I want to, when I do I see it as a sign of improving health. I sneezed this morning! A sneeze is such a wonderful thing!

I continued to lose weight, have no energy at all, no appetite, muscle and joint pain, and be extremely out of breath. After a month I went to my internist, who told me there was nothing wrong with my lungs, so bed rest for five days and then we’ll see. I had a show at the Gaylord Street Fair the next day. My trusty sherpa, Tom, carried and set up every piece of equipment, and I just played. People told me I sounded great, and I hope I did. I know it sure felt good to be playing for people, no matter how awful I felt. So after the gig I did the bed rest thing. Boy, that pissed me off. The last think I wanted to do was be forced to “only read and watch TV”. But it seemed like I was feeling better, so I tried a few more days. Then I got really sick of it and decided to get out of bed anyway.

Things just continued. I had an appointment with Gensler, the rheumatologist, and my white blood count was dangerously low so he wanted me to stop the methetrexate. So here I was again on no medication at all. I was really getting sick of not being able to breathe. I got winded walking across the lawn. Before all this I did aerobics three times a week. So I became more vocal with my doc. He was going to put me on Embrel, but they tell you that there’s an increased risk of TB so have your lungs checked.

They sent me to have another X-ray of my lungs, and the X-ray tech told the doc that I had pneumonia. Still! I’ve had it for three months! No way. And then we were talking about it, and he said he wanted clarification because I wasn’t acting like someone who had pneumonia, I was just out of breath. Turns out I still had pleural effusions. I’m not really sure if that’s the same as pleurisy, but it was keeping my lungs from fully expanding. That’s when he called and told me that pleurisy really doesn’t go along with arthritis, and neither does the white blood count dropping, so he went over all the old blood tests and X-rays and decided that I have Lupus. Oh man, it was like he it me over the head with a brick and punched me in the stomach at the same time. I barely remember the rest of what he said, only that one of the first things he told me was something like “where it’s true that people can die from Lupus, that doesn’t mean it will happen to you. Many people have only the symptoms that you’ve already had and there’s no reason to think that it will get any worse.” Well, at the time all I hear was “die from Lupus”, but with time I remember more the part about it not getting worse.

So, a new course of meds. In order to get me breathing again, we started with 20 mg of prednisone with a taper, and plaquenil, which is actually an anti-malarial drug. They call it a “disease course altering drug”, and apparently they don’t know how it works. A little disconcerting, but given the alternative, I’ll take the drug.

With the prednisone I instantly was able to do everything. Suddenly I could just get up from a chair, or walk, or hold a full glass of water. I started calling myself “Super Josie” because I had all my super powers back. The super power of being able to drive my car, the super power of being able to walk up and down the stairs, to stand up. It’s still great, and every day I appreciate being able to reach over my head to put something away, or lift the water pitcher with one hand. But, I had lost a lot of muscle strength. I found I could pick up a chair, but I didn’t have the strength to lift it over my head. Bit by bit, I’ve been able to get it back.