I can see clearly now, the rain has gone
I can see all obstacles in my way
Gone are the dark cloudds that had me blind
It's gonna be a bright, bright, bright, bright sun-shiny day
Recorded by Johnny Nash
I think the “secret to my success” can all be traced back to meditation. Meditation opened the doors of self-awareness that gave me faith and the confidence to follow my instincts.
I found the benefits of meditation immediately, and they just keep multiplying exponentially. The time that I spend on meditation I get back a thousand fold in simply being more focused. I’m less likely to lose things, or walk into a room wondering why I’m there, or lose my train of thought. When I do, I recover much more quickly.
I became intrigued by the idea of meditation after reading a newspaper article about how Zen is the training of the “monkey mind”. “Monkey mind” was an extremely accurate description of my mind, constantly jumping from one idea or thought to another. One of my favorite sayings was “I just wish my brain would leave me alone”. The idea of training my mind to not do that sounded wonderful. I picked up a copy of The Idiot’s Guide to Zen Living and discovered a new way of being.
I found out that meditation wasn’t as difficult as I expected it to be, and that it wasn’t as great of a time sacrifice that I was afraid of. Like so many people, I was strapped for time. There are far more obligations and expectations and ideas and desires than a person has time for in a day. “Stop the world, I want to get off!” would go through my head. With meditation, I was able to do just that, for a little while.
One of the assumptions I made about meditation was that it would take too long. I don’t have an hour a day to just sit and do nothing, are you crazy? Well, it’s unreasonable to expect anyone to go from not sitting at all to sitting for an hour. So, like jogging, you build up to it. When my husband started jogging it was for 30 seconds with ten minutes of walking and then another 30 seconds. I started my meditation practice with five minutes a day. I got a kitchen timer, that I still use, and set it for five minutes. I did that for a week, then increased it by five minutes. Eventually I built it up to thirty minutes every day. The book says ideally it should be two thirty minute sessions every day, but I’m happy with one.
Another assumption I made was that I had to sit and say “ommm” out loud. I’m not an out loud kind of person, and that would make me too self-conscious. I don’t say anything to myself. There are numerous tricks to get one to empty your mind, and that’s one of them. Another is to “follow your breath”, but I never really understood what that meant. Another is to count your breaths, from one to ten, and then start over again. All of these are just tricks to get your mind to stop its chatter. I do what seems like the right thing to do, and it changes every day. Some days I try to have no words in my head just at the point of my exhale. Other days I have whatever word or phrase pops into my head, like “fluid and smooth” or “healthy and well”. I think if I tried to follow a formula it would become stale.
The most common assumption I hear from people is that the “can’t meditate”. If you could do it already, you wouldn’t need to practice it! It is extremely difficult to actually empty your mind, I’ve even read that the Dalai Lama says he can’t do it. Well, if he can’t do it, then it’s okay that I can’t do it. If nature abhors a vacuum, it also abhors a vacuum of thought. It’s normal to have a new thought pop into your head just as you empty the old ones out, but the fun thing is all the new thoughts that now have room. I’ve found solutions to problems popping into my head, I believe because I let the old things that didn’t work go.
I see the mind as one of those wind-up toy monkeys with banging cymbals. When I begin my meditation, the monkey is banging furiously. As I sit, the banging gets less and less as my mind winds down. Sometimes it comes to a stop, usually just as the timer is about to go off. Most of the time it just unwinds to a manageable speed, and then I’m not starting my day at wound up as tightly as possible, with the monkey banging in my head.
We start life needing to practice everything. We don’t come out of the womb already aware of how to speak, to walk, to eat with a fork. We have to practice all these things. Somewhere along the line we get the idea that we’re supposed to know everything already. When I look back on my path, I think this happened around the age of fourteen. I thought I was supposed to know everything already. I think I’m not unusual, I bet everybody starts to think that at fourteen. Since it’s not in our nature to automatically know anything, so why should we automatically know how to meditate? Meditation takes practice, just like tying your shoes or learning the alphabet. I think this made sense to me because of need ing to practice the violin every day. If I don’t do that, I start to play badly. Now I find that if I miss meditating, I think badly.
If this sounds intriguing, I recommend you try it for a week. Five minutes a day for a week. You won’t empty your mind, but you’ll probably feel more focused and relaxed as you start the day. I would be very interested to hear of anyone else's experiences, feel free to leave a comment!
Sunday, December 5, 2010
Wednesday, April 14, 2010
Always Look on the Bright Side of Life
I did aerobics today for the first time since fall of 2008. This is a real benchmark for me. I’m getting my life back, one step at a time.
Once upon a time I did an hour of strength training/aerobics three times a week. I tried to keep doing it, but I couldn’t hang onto it. My movements were too stiff and slow to keep up, and the worst part was the neuropathy in my feet. They would get pins and needles in them after being on them for just a few minutes, and it got worse the more active I was. I still get it, but not all the time, and it’s not as bad. If I get off my feet for a few minutes it goes away.
I’ve been dreaming about doing aerobics lately. It’s not like I was some sort of fitness freak, I never really LIKED aerobics, but I liked how I felt after wards. It kept my weight down and gave me more energy and it really helped keep anxiety and depression at bay. I haven’t really been missing it, I’ve replaced it with yoga and I really like doing that. In fact I had pretty much resigned myself to the idea that that was something that I used to do. When I started dreaming about doing aerobics I figured it was the cosmos telling me something.
I’ve been trying to get my lungs working to full capacity again. A year after the pneumonia/pleurisy began I still can’t take a full breath. I have a ritual of blowing up a balloon twice every day. I figure that I have to ask from my body what I want my body to do. I’m not going to just be able to breathe if I don’t make it happen. So I figure it’s the universe telling me that if I want to breathe, it’s time to start exercising my lungs more, to push it.
So the aerobics I did today was a drop in the bucket compared to what I used to do. I have on VHS these tapes from an aerobics show that aired in the 80’s for half an hour. So it was a warm up, eight or ten minutes of aerobics, eight or ten minutes of floor work, and that’s it. I used to do 25 minutes of actual aerobics with warm up and floor work taking up the other 35 minutes. Well, I guess it’s not quite the first time since fall of 2008, I did try once maybe nine or ten months ago. I was so winded I couldn’t do the whole eight minutes, and I had some sort of relapse right after that. I got through it today. I was winded, but not dying like I was that other time. Maybe I can start to add that back into my life, and get even closer to whatever normal is.
During the whole ordeal of thinking I had arthritis and having all the meds have adverse effects I always knew that I would get through it. I can’t explain it, but it would happen during my meditations. It feels like I have a cheering section telling me that I can do it, I’m going to be all right. I always knew that I would be okay. I was determined that I was going to get my life back, and today I can say that I do have it back. I can do in a day almost everything that I could do before I got sick. I pictured what I wanted my life to be like. I have on my music stand a list of priorities, so I see it every day. The things I want out of life are to breathe, walk, ride my bike, and play the violin. Those were the things I was most in danger of losing, and I made sure I didn’t.
A friend of mine in my pottery class said the other day,”We had a shell, and now we have a person back.” My best friend said the other day that that whole year I looked frail. It blows me away to hear that, I was so inside myself busy trying to survive it didn’t occur to me that anyone really saw. I guess they did.
Another thing I have on my music stand so I see it every day is “Live each day as if you already have the things you want”. I want to not have Lupus, and I try to remember to live each day as if I don’t have it. People with Lupus don’t park their car a few blocks away and walk, so that’s what I do. If I’m wondering if I have the stamina to do things, I just pretend I don’t have this and go about my business. It’s working so far!
I just sneezed! With no huffing and puffing first, looking like a cat trying to hork up a hairball!
Once upon a time I did an hour of strength training/aerobics three times a week. I tried to keep doing it, but I couldn’t hang onto it. My movements were too stiff and slow to keep up, and the worst part was the neuropathy in my feet. They would get pins and needles in them after being on them for just a few minutes, and it got worse the more active I was. I still get it, but not all the time, and it’s not as bad. If I get off my feet for a few minutes it goes away.
I’ve been dreaming about doing aerobics lately. It’s not like I was some sort of fitness freak, I never really LIKED aerobics, but I liked how I felt after wards. It kept my weight down and gave me more energy and it really helped keep anxiety and depression at bay. I haven’t really been missing it, I’ve replaced it with yoga and I really like doing that. In fact I had pretty much resigned myself to the idea that that was something that I used to do. When I started dreaming about doing aerobics I figured it was the cosmos telling me something.
I’ve been trying to get my lungs working to full capacity again. A year after the pneumonia/pleurisy began I still can’t take a full breath. I have a ritual of blowing up a balloon twice every day. I figure that I have to ask from my body what I want my body to do. I’m not going to just be able to breathe if I don’t make it happen. So I figure it’s the universe telling me that if I want to breathe, it’s time to start exercising my lungs more, to push it.
So the aerobics I did today was a drop in the bucket compared to what I used to do. I have on VHS these tapes from an aerobics show that aired in the 80’s for half an hour. So it was a warm up, eight or ten minutes of aerobics, eight or ten minutes of floor work, and that’s it. I used to do 25 minutes of actual aerobics with warm up and floor work taking up the other 35 minutes. Well, I guess it’s not quite the first time since fall of 2008, I did try once maybe nine or ten months ago. I was so winded I couldn’t do the whole eight minutes, and I had some sort of relapse right after that. I got through it today. I was winded, but not dying like I was that other time. Maybe I can start to add that back into my life, and get even closer to whatever normal is.
During the whole ordeal of thinking I had arthritis and having all the meds have adverse effects I always knew that I would get through it. I can’t explain it, but it would happen during my meditations. It feels like I have a cheering section telling me that I can do it, I’m going to be all right. I always knew that I would be okay. I was determined that I was going to get my life back, and today I can say that I do have it back. I can do in a day almost everything that I could do before I got sick. I pictured what I wanted my life to be like. I have on my music stand a list of priorities, so I see it every day. The things I want out of life are to breathe, walk, ride my bike, and play the violin. Those were the things I was most in danger of losing, and I made sure I didn’t.
A friend of mine in my pottery class said the other day,”We had a shell, and now we have a person back.” My best friend said the other day that that whole year I looked frail. It blows me away to hear that, I was so inside myself busy trying to survive it didn’t occur to me that anyone really saw. I guess they did.
Another thing I have on my music stand so I see it every day is “Live each day as if you already have the things you want”. I want to not have Lupus, and I try to remember to live each day as if I don’t have it. People with Lupus don’t park their car a few blocks away and walk, so that’s what I do. If I’m wondering if I have the stamina to do things, I just pretend I don’t have this and go about my business. It’s working so far!
I just sneezed! With no huffing and puffing first, looking like a cat trying to hork up a hairball!
Sunday, April 4, 2010
Hey Now, You're a Rock Star
I started meditating after my dad died in 2004, so I had been practicing for four years before this all started. If I hadn’t had that in place I’m sure I wouldn’t have made the recovery I’ve made. It’s hard to explain it, but when I meditated I just knew I was going to be okay. I knew that this was going to pass, that I would get my life back. I knew when the right medication was going to happen. I didn’t know about the change in diagnosis, but I knew the next drug was going to be the right drug. And I’ve always had in my mind the time frame of a year and a half. From when, I never knew for sure, but it’s been a year and a half from the start of my symptoms.
I think the whole reason I’m doing as well as I am is because of my strategy of pretending I don’t have a chronic illness. I live each day as if I don’t have Lupus. I don’t read up on the latest research or the possible symptoms, I’d rather be ignorant. Let my doctor think about that stuff, that’s what I pay him for. I am fully expecting to go into remission, and I live like that has happened.
So I spent a year of my life feeling like I was suddenly 84, instead of 44. It was a decline that took about six months, so when I get asked if it was fast or gradual I’m not sure what to say. Quickly gradual, I guess. I can really empathize with my 84 year-old mother now. I know why little old ladies carry their purses in the crook of their elbow. It takes too much effort to sling it over your shoulder, and it hurts, and holding it in your hand hurts your fingers. I was leaving the lids off my pill bottles because even the easy open ones were too painful to open. People asked me if I was journaling, but it hurt too much to hold a pen or to type. Besides, the effort of getting up to go to the computer or to get a notebook was just too much. I would see little old ladies with walkers and get jealous that they earned walking like that and I didn’t. I stopped taking my violin to teach lessons, mainly because I couldn’t carry it anymore. I also wasn’t able to just pick it up and demonstrate what I wanted them to do.
Man, I think about that time, and the day I had today. After Easter brunch with friends, I came home and went on a 14 mile bike ride. After a little lunch I went out and weeded a flower bed for a couple of hours. Then I did a few chores round the house. Now I’m writing this.
I wish I had documented my regaining my life. About the time that I went to the ER I was just getting tired of not having my life. It was pissing me off that I couldn’t do anything anymore. Tom was doing EVERYTHING around the house. I couldn’t grocery shop, I didn’t cook, couldn’t go down the stairs to do laundry, so Tom did it all. Sometimes he had to help me dress or get out of the bathtub. Those were low times. I am so lucky to have him, he just did what needed to be done. I’ve been told that I was brave. I just survived. Tom was the one who was brave, watching his wife lose her health and not being able to do anything about it. It must have been rough on him. He’s amazing.
At some point I decided that I had to try to get some movement back in my body. I started with some very slow yoga, I would stretch my arms up (mountain pose) and do a forward bend three times, and that took about ten minutes. I gradualy was able to add more poses, but it took a long time before I could get down on the floor and get back up again. My walks started with a block and a half before I had to turn around. My calf muscles felt like I had walked miles. Every time I would start to build up my stamina, something would come along and knock me back. First was having to stop the anti-inflammatory because of liver failure, so I was on no meds for a couple of months while I got that out of my system. Then I got pneumonia. Then I had to stop the next med because my white blood count dropped too low. So again, no meds for a couple months. Then they tell me I still have pneumonia. I’d get to where I could walk ten blocks, then I’d have to go off meds and lose any ground I’d gained. It was frustrating.
Every summer we take my neice to the Rennaisance Festival to see my good friend who plays the Queen. It’s so much fun to know the Queen, and to have my nine year old neice get special treatment from royalty. I was bound and determined to be able to go to the festival that summer, and I started “training” for it in May. I would try to add an extra block to my walks each time so I could build stamina. As luck would have it, I started the prednisone the week we were going, and I was Super Josie! I was able to walk the whole day, and it was great.
The following weekend Tom and I had planned to go to Glenwood Springs for his birthday. I wanted to take him somewhere where he could get waited on instead of having to wait on me. I was feeling great, and we rode our bikes and played miniature golf and soaked in the hot springs. I was still feeling like I’d been handed a death sentence, and that weekend I decided that I wasn’t going to be a Lupus patient. That life would be one of worrying about what the disease is going to do next, sitting in waiting rooms and discussing symptoms and meds. I’m going to have an active life, one where I can ride my bike or walk a couple of blocks to a restaurant. One where I don’t always have to think about whether or not I can do something. I’m just gonna do it.
That weekend was a turning point for me. It has been helpful to follow the buddist doctrine of mindfullness, which is really just be in the moment. I know I feel good now, so feel good now. Don’t worry about what might happen. It’s not always easy, and of course I get scared once in a while, but I figure I pay my doctor good money to worry, so let him do the worrying for me. Stress has a huge impact on how I feel, so if I can not stress about what I might feel like I feel a lot better. And like anything, it gets easier with practice. The more I don’t stress about it, the easier it gets to not stress about it. It’s like AA, one day at a time.
I think the whole reason I’m doing as well as I am is because of my strategy of pretending I don’t have a chronic illness. I live each day as if I don’t have Lupus. I don’t read up on the latest research or the possible symptoms, I’d rather be ignorant. Let my doctor think about that stuff, that’s what I pay him for. I am fully expecting to go into remission, and I live like that has happened.
So I spent a year of my life feeling like I was suddenly 84, instead of 44. It was a decline that took about six months, so when I get asked if it was fast or gradual I’m not sure what to say. Quickly gradual, I guess. I can really empathize with my 84 year-old mother now. I know why little old ladies carry their purses in the crook of their elbow. It takes too much effort to sling it over your shoulder, and it hurts, and holding it in your hand hurts your fingers. I was leaving the lids off my pill bottles because even the easy open ones were too painful to open. People asked me if I was journaling, but it hurt too much to hold a pen or to type. Besides, the effort of getting up to go to the computer or to get a notebook was just too much. I would see little old ladies with walkers and get jealous that they earned walking like that and I didn’t. I stopped taking my violin to teach lessons, mainly because I couldn’t carry it anymore. I also wasn’t able to just pick it up and demonstrate what I wanted them to do.
Man, I think about that time, and the day I had today. After Easter brunch with friends, I came home and went on a 14 mile bike ride. After a little lunch I went out and weeded a flower bed for a couple of hours. Then I did a few chores round the house. Now I’m writing this.
I wish I had documented my regaining my life. About the time that I went to the ER I was just getting tired of not having my life. It was pissing me off that I couldn’t do anything anymore. Tom was doing EVERYTHING around the house. I couldn’t grocery shop, I didn’t cook, couldn’t go down the stairs to do laundry, so Tom did it all. Sometimes he had to help me dress or get out of the bathtub. Those were low times. I am so lucky to have him, he just did what needed to be done. I’ve been told that I was brave. I just survived. Tom was the one who was brave, watching his wife lose her health and not being able to do anything about it. It must have been rough on him. He’s amazing.
At some point I decided that I had to try to get some movement back in my body. I started with some very slow yoga, I would stretch my arms up (mountain pose) and do a forward bend three times, and that took about ten minutes. I gradualy was able to add more poses, but it took a long time before I could get down on the floor and get back up again. My walks started with a block and a half before I had to turn around. My calf muscles felt like I had walked miles. Every time I would start to build up my stamina, something would come along and knock me back. First was having to stop the anti-inflammatory because of liver failure, so I was on no meds for a couple of months while I got that out of my system. Then I got pneumonia. Then I had to stop the next med because my white blood count dropped too low. So again, no meds for a couple months. Then they tell me I still have pneumonia. I’d get to where I could walk ten blocks, then I’d have to go off meds and lose any ground I’d gained. It was frustrating.
Every summer we take my neice to the Rennaisance Festival to see my good friend who plays the Queen. It’s so much fun to know the Queen, and to have my nine year old neice get special treatment from royalty. I was bound and determined to be able to go to the festival that summer, and I started “training” for it in May. I would try to add an extra block to my walks each time so I could build stamina. As luck would have it, I started the prednisone the week we were going, and I was Super Josie! I was able to walk the whole day, and it was great.
The following weekend Tom and I had planned to go to Glenwood Springs for his birthday. I wanted to take him somewhere where he could get waited on instead of having to wait on me. I was feeling great, and we rode our bikes and played miniature golf and soaked in the hot springs. I was still feeling like I’d been handed a death sentence, and that weekend I decided that I wasn’t going to be a Lupus patient. That life would be one of worrying about what the disease is going to do next, sitting in waiting rooms and discussing symptoms and meds. I’m going to have an active life, one where I can ride my bike or walk a couple of blocks to a restaurant. One where I don’t always have to think about whether or not I can do something. I’m just gonna do it.
That weekend was a turning point for me. It has been helpful to follow the buddist doctrine of mindfullness, which is really just be in the moment. I know I feel good now, so feel good now. Don’t worry about what might happen. It’s not always easy, and of course I get scared once in a while, but I figure I pay my doctor good money to worry, so let him do the worrying for me. Stress has a huge impact on how I feel, so if I can not stress about what I might feel like I feel a lot better. And like anything, it gets easier with practice. The more I don’t stress about it, the easier it gets to not stress about it. It’s like AA, one day at a time.
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.
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.
Sunday, January 17, 2010
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!
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!
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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