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!
Sunday, January 17, 2010
Thursday, January 7, 2010
Going Mobile
It’s been happening a lot lately, people saying to me “you sure look a lot better than you did!” Some tell me I looked like I was beat up with a baseball bat. It’s nice, but a little disconcerting. It happened today at the grocery store. I ran into one of my neighbors, people who we’re friendly with but not close to, and she was telling me how they could tell something was wrong. She described watching me walk slower and slower, and becoming more and more stooped, and she said I got whiter and whiter. Every time she saw me. And she commented on my weight loss. She said she wanted to ask if everything was all right but felt uncomfortable doing so. She didn’t need to feel uncomfortable, I would have welcomed the concern, but I can certainly understand how she felt. I wouldn’t have walked up to someone and asked them if they were okay, either.
It’s kinda weird, realizing how much my decline affected people. I was just trying to survive it. I didn’t notice at the time the effect it had. It must have been hard for Tom to see me like that. Sometimes he would just watch me go through the process of getting up, and I could tell he wanted to just make it go away. He’s told me numerous times that it’s nice to have me back. It’s nice to be back.
It’s been a year since my first visit to the Denver Arthritis Clinic. My first visit they did a full work up, blood tests, X rays, detailed history, etc. About a week later the doc called and told me that I tested negative for Rheumatoid Arthritis and Lupus, but there was an indication of inflammation in the blood work. I don’t know exactly what he was seeing, but it meant that there was definitely something systemic going on. He did tell me that I tested positive for the genetic marker for Lupus but not the antigens or antibodies or whatever they are. I’m a musician, not a doctor. Anyway, since I’ve had a history of psoriasis, he diagnosed psoriatic arthritis. It’s very similar to rheumatoid arthritis in symptoms and treatment but the cause is different. It’s also an autoimmune disease where the immune system attacks your joints. Great. What was going to happen to my music career?
So he started me on a heavy duty anti-inflammatory. Come back in six weeks. It will take about three months to tell if this is the right med. Okay. I have a colleague with RA, and she told me it took them a couple years to get the meds dialed in. I always knew I would be okay, so I was ready for it to take some time to find the right med.
I thought I was getting better, but six weeks later Dr. Gensler didn’t think the improvement was enough. He thought it should be better, and we could keep trying this but he didn’t think it was the right med and let’s try something else. The next step was an immunosuppresant, and it’s hard on the liver. So I had to have a liver panel before starting it. Okay, standard procedure.
Turns out my liver wasn’t working right after the anti-inflammatory. Mild liver failure. Take nothing for two weeks and we’ll recheck. Still mild liver failure. Two more weeks with no meds and we’ll recheck. So I had to go about six weeks with no meds at all while my system stabilized.
Meanwhile, I couldn’t go up and down the stairs very well anymore. I had to take them one step at a time, like a two year old. I couldn’t lift anything very heavy, and it got to where I needed two hands to lift a glass of water. I was tired all the time. I thought the constant pain was wearing me out, and maybe it was, but now I know that fatigue is a symptom and I wasn’t aware that what I was experiencing was called fatigue.
I had pain all over. It also would move around. For a few days my jaw would hurt so much I could barely eat. Then that would go away and my feet would hurt too much to stand for more than five minutes. My arms and legs were always stiff and achy, like I had done a triathlon or something. I was getting this weird burning/itching sensation in my hands and feet. It would happen for an hour or a day, sometimes both feet, sometimes one hand. It was strange and unpredictable. The things I was feeling never stayed long enough to tell the doctor about, and they were so strange I couldn’t describe them. I told him about my feet feeling like they’re falling asleep while I’m walking, and he didn’t have an answer for it. So I just waited to see if the next med would help.
It’s kinda weird, realizing how much my decline affected people. I was just trying to survive it. I didn’t notice at the time the effect it had. It must have been hard for Tom to see me like that. Sometimes he would just watch me go through the process of getting up, and I could tell he wanted to just make it go away. He’s told me numerous times that it’s nice to have me back. It’s nice to be back.
It’s been a year since my first visit to the Denver Arthritis Clinic. My first visit they did a full work up, blood tests, X rays, detailed history, etc. About a week later the doc called and told me that I tested negative for Rheumatoid Arthritis and Lupus, but there was an indication of inflammation in the blood work. I don’t know exactly what he was seeing, but it meant that there was definitely something systemic going on. He did tell me that I tested positive for the genetic marker for Lupus but not the antigens or antibodies or whatever they are. I’m a musician, not a doctor. Anyway, since I’ve had a history of psoriasis, he diagnosed psoriatic arthritis. It’s very similar to rheumatoid arthritis in symptoms and treatment but the cause is different. It’s also an autoimmune disease where the immune system attacks your joints. Great. What was going to happen to my music career?
So he started me on a heavy duty anti-inflammatory. Come back in six weeks. It will take about three months to tell if this is the right med. Okay. I have a colleague with RA, and she told me it took them a couple years to get the meds dialed in. I always knew I would be okay, so I was ready for it to take some time to find the right med.
I thought I was getting better, but six weeks later Dr. Gensler didn’t think the improvement was enough. He thought it should be better, and we could keep trying this but he didn’t think it was the right med and let’s try something else. The next step was an immunosuppresant, and it’s hard on the liver. So I had to have a liver panel before starting it. Okay, standard procedure.
Turns out my liver wasn’t working right after the anti-inflammatory. Mild liver failure. Take nothing for two weeks and we’ll recheck. Still mild liver failure. Two more weeks with no meds and we’ll recheck. So I had to go about six weeks with no meds at all while my system stabilized.
Meanwhile, I couldn’t go up and down the stairs very well anymore. I had to take them one step at a time, like a two year old. I couldn’t lift anything very heavy, and it got to where I needed two hands to lift a glass of water. I was tired all the time. I thought the constant pain was wearing me out, and maybe it was, but now I know that fatigue is a symptom and I wasn’t aware that what I was experiencing was called fatigue.
I had pain all over. It also would move around. For a few days my jaw would hurt so much I could barely eat. Then that would go away and my feet would hurt too much to stand for more than five minutes. My arms and legs were always stiff and achy, like I had done a triathlon or something. I was getting this weird burning/itching sensation in my hands and feet. It would happen for an hour or a day, sometimes both feet, sometimes one hand. It was strange and unpredictable. The things I was feeling never stayed long enough to tell the doctor about, and they were so strange I couldn’t describe them. I told him about my feet feeling like they’re falling asleep while I’m walking, and he didn’t have an answer for it. So I just waited to see if the next med would help.
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