If you want to live high, live high!

Dec 5, 2009

My intention was to write more often, and to chronicle the path of my illness. I guess what I wanted to write and what my idea of what this was “supposed” to be didn’t match up. I think that’s the source of the stress that led to this, my idea of what I was supposed to be got in the way of me being who I am. My friend Leonard calls this ego, in buddhism they call it self. I guess it’s all the same thing, getting in the way of being who you are because you’re trying to be who you think you are. Or should be. Maybe whoever translated the Tibetan didn’t know the word “ego”.

I had this idea that I would tell the story with the big surprise (at least to me!) ending, in some literary genius manner, and I guess I really want to write about what’s going on now. So I’ll do that, then come back to telling the story. So the big surprise ending is (don’t look if you don’t want to spoil the surprise) I have lupus. So far, it’s not as bad as I was afraid it would be.

I know it can be awful, and every once in a while some chipper person makes sure I remember that, but I’d really rather not think about it. “Ignorance is bliss” has always been one of my favorite sayings, credos, really, and I’m using it. I get scared sometimes, but I tell myself that I feel good now, and now is what matters. Buddhism is coming in handy.

I’m really feeling pretty good. After what I’ve been through, I appreciate being able to do for myself the minutiae that is everyday life. For example, I was just able to get out of the bathtub. I could put my arms behind me, push, lift my own weight, get my legs under me, and stand. All things I couldn’t do last July. Four months ago.

Everyday something hurts, and it’s usually something different each day. I guess that’s one of the things that makes this so hard to diagnose. But it doesn’t hurt enough to stop me from doing the things I want to do. I’m pretty much having normal days again, where I can do whatever I’d like to do. I haven’t decided to go for any mountain hikes, but I can walk a couple miles.

My mom calls me every day and tells me she feels like dog shit. She is soon to be 83, and has her own health issues, but her cardiologist just told her her heart muscle is stronger than ever, and her blood work was “perfect”. She does nothing to help herself feel better, except call me and dump it there. I work my ass off to stay feeling good. Sometimes my whole day is taken up with trying to feel better so I can have a productive day the next day. This has got me thinking a lot about how much I do every day to just stay feeling good.

Every morning I wash the dishes. Sounds strange, but it gets me moving in a gentle manner with no straining. I think it probably moves most muscles, reaching and walking around the kitchen putting dishes away warms me up. Then I meditate for half an hour. Then I practice. If I don’t then my hands stiffen up and it’s harder to play the next day. Somehow, also, it makes me feel better. It takes away my pain, and it eases my mind. Maybe my own music is soothing my savage breast. Then I do half an hour of yoga. So this is a minimum of two and a half hours that I HAVE to do every day.

Then I add to that something else most days. I try to go for a walk when I can, if too much time goes by without me walking my knees get sore and it’s hard to walk. I go to an acupuncturist, get regular massages, go to Feldenkries class, which is a kind of physical therapy, for lack of a better explanation, where you reeducate your patterns of movement with body awareness. I go to the hot tub when I get really stiff, sometimes I soak in my own tub with bath salts.

I watch what I eat. I’ve stopped eating dairy, and with that most processed foods, mainly because they all contain dairy. I take a bunch of supplements each day in addition to prescription meds.

And I try to be positive. I’ve made a playlist for my ipod of happy, feel good music that I listen to. That’s where I get the titles for these blog entries, either the titles themselves or lyrics from the songs. I listen to them all the time. The words reverberate in my head and help me when I’m feeling down.

It’s a lot of work. At first I was so exhausted after walking, meditating, practicing, and yoga I had to rest. It took up my whole day, but I felt better doing them than not doing them. And after all that, I have to go to work. Thank god I don’t have a regular nine to five job, or I think I’d have to quit.

Lupus can go into spontaneous remission. I don’t know how often it happens, and I don’t want to know. It’s part of the reality I’m creating, I’m going to go out of this just as suddenly as I came into it. If I find out it happens rarely then I’ll be qualifying my possibility of remission, and I don’t want to do that. So if you know, keep it to yourself. My plan is to have lupus as long as I need it, and to get rid of it when I don’t need it anymore.

As much as I’d rather not have lupus, it has given me a lot of gifts. Right off the bat is the appreciation to be able to move. Every time I can get up and get my own glass of water I smile. Every minute I’m happy that I can do things. I call myself Super Josie, because I have all my super powers back. I know how Superman felt around Kryptonite, ‘cause that’s what I had.

I think the reason I got this was so I would have a reason to stick up for myself, and to justify putting my own needs first. I’ve spent my life fixing my familiy’s problems, and taking the blame when things didn’t work. The responsibility crushed me. This all started after a particularly stressful event. I think instead of having a nervous breakdown, I had a nervous system breakdown. Now I HAVE to take care of myself, and I have to think of what is too much for me first, before I go springing into action to solve other people’s problems. Now I have a reason to be selfish.

I think I’ll have lupus as long as I need an excuse to look out for myself. When it becomes a habit, I won’t need it anymore.

I feel good...I knew that I would

Fast forward to August 29, 2009.

At the beginning of June I could only walk about three blocks before I had to turn around because I was too tired. I wasn’t able to do the grocery shopping because it was too much for me. I wasn’t doing any yoga, I couldn’t get down on the floor without the help of a couch. I was afraid of trying a downward dog, I didn’t think my arms could hold me up and that I would land on my face.

Today, three months later, I did 40 minutes of yoga and rode my bike 12 miles. That’s the farthest I’ve gone since sometime last fall. Now I wish I had kept track of my progress, my first bike ride last June was 6 miles and my lungs were sore for two days afterwards. I started walking more, because I was bound and determined to take my niece to the Renaissance Festival, and that meant walking all day. So I began walking every day, first six blocks, then ten, increasing by two blocks until I got up to thirty minutes. Now I’m walking 30 minutes and increasing my speed, thereby increasing my distance. Now I can walk 1.4 miles in 30 minutes, it was six blocks in about fifteen minutes.

August 1 we went to Glenwood Springs, and we took our bikes. I rode eight miles the first day, ten the second. I really wasn’t sure if I’d be able to do it. Granted, I did walk up some of those hills, but my body went ten miles. That was when I started to ride more often, trying to add more miles each time. Sometimes the hills really killed me, and these are tiny little increases in elevation that another person wouldn’t even call a hill. My lungs are still compromised, but I think I can breathe better every time I ride.

Back to my narrative...

In August of 2008 we scheduled studio time to record a new CD. This was going to be a CD of vintage and gypsy jazz, in the style of my violin hero, Stephane Grapelli. For those of you not familiar with his playing, he puts all other virtuosos to shame. I wasn’t going to TRY to play like him, but even so, I had big shoes to fill. Since these aches and pains were playing injuries I was certain I’d be over them by the time the recording session came along, so I didn’t think about it.

The recording session was in late October. By this time I was having trouble with muscle pain in my arms and legs, and stiffness in my hands and wrists. I told myself to just play within my limits and not to try to show off. I ended up playing licks that I normally don’t play, and I really like the end result because it’s not what I expect to hear myself play. I had to warm up a lot before recording, and take a lot of stretching breaks between takes, but I do think it came out well. I was apprehensive because I knew my hands weren’t doing all the things I wanted them to do, but my trusty producer (Tom) assured me that he couldn’t hear any decline in my playing. My best friend, Alyson, who has listened to me play for 26 years, also said I sounded great. I trusted both of these people to be honest with me. Tom and I made a pact years ago to keep the music a priority and not let criticism be personal, so I knew he wasn’t trying to spare my feelings.

At the beginning of November I knew I had a problem. I scheduled an appointment with the Denver Arthritis Clinic, but the earliest they could see me was December 28. Meanwhile, I had a bunch of Christmas gigs coming up. To make it a little more taxing, the economy was bad and not as many gigs were coming in as a typical Christmas season. I had several days with two gigs, and then a week without a gig. So I had to take the two gig days, and now I was wondering just how was I going to manage. I kind of manipulated the system by telling a podiatrist that I had seen a year earlier for an arthritic toe that it was acting up again, and could I please have some steroids? From my earlier experience with steroids, I knew that all the pain and inflammation in my body would go away for about three weeks. That was all I needed, just to get through Christmas.

So I went on my steroid high. I can see why those baseball players get in trouble. I didn’t get mean or aggressive, I got euphorically happy. Maybe that was just because the pain had gone away, and the stress of wondering how I was going to play a five hour gig had gone away with it.

I got through Christmas, and then it was time for my appointment at the Denver Arthritis Clinic. My appointment was with Dr. Tim Gensler. I had no idea if he was any good, but I was hoping that working for the clinic meant he had some sort of skill. It was a total crap shoot, luck of the draw, schedule me with the first doc that has an opening because I can’t wait any longer for an answer to my problem! Give me some drugs, please!

More later...

You don't know what you've got till it's gone

I was an active, healthy 43 year old, in the prime of my life, right at that golden age where you’ve learned enough to take care of yourself, but you’re not too old to enjoy being young. Everything ws going great, I felt like I was playing at my best, I’d just bought a new violin that I loved playing. I was finally beginning to feel comfortable in my own skin and liking myself. I ate well, exercised regularly, meditated daily, was getting into yoga, doing all the right things to take care of myself. I have no risk factors for anything, my blood pressure is perfect. Then it all came crashing down. In a few short months I was reduced to shuffling around the house like an old woman. I needed help getting out of the bathtub. I couldn’t walk more than about a block, couldn’t stand longer than about five minutes without pain. I needed two hands to lift a glass of water. It’s amazing how quickly your health can just be snatched away from you. And for no reason. I didn’t do anything to bring this on. I wasn’t a health nut, but I was conscious of taking care of myself.

It all began with a stressful event that happened last July. I can trace this illness back to that week. So my advice to you is keep that stress from even entering your mind. It’s not enough to release it, don’t let it in in the first place. Don’t engage the things that stress you. If it’s your family, don’t fight back. Just don’t be a part of their shit. Let them do their thing and don’t engage. If it’s work, nothing is more important than your health, let it slide. Stress is a killer. Literally.

It began with my hands. They were sore and stiff in each knuckle. I couldn’t make a fist, and couldn’t straighten them all the way. Like most musicians, I figured it was tendinitis. When I was 20 and in music school I developed tendinitis in all the fingers of both hands, which is fairly rare, I learned. I went to a musician’s clinic, where they tested me for rheumatoid arthritis and osteoarthritis, both negative, neurological problems, which were negative, and I can’t remember what else. The verdict was tendinitis in both hands, ice, anti-inflammatories, and rest. That, as most musicians know, became the standard course of treatment. So that’s what I did. I thought it was a flare up of that old injury. I plunged my hands into ice baths, I stopped playing, I took lots of Advil. It didn’t do a thing.

Then my arms started hurting, elbows, shoulders, and the muscles in my arms ached. I thought that was from this tendinitis I had, that the muscles were sore from working more because of the joint pain. So I decided to take a week off from activity. If I went to a doctor, that’s what they’d tell me, rest. So no violin, no computer, no bike, no gardening, no aerobics, no yoga. All these things hurt my arms. After two days of this my legs started hurting. My knees were sore, and the muscles in my legs felt like I had run a marathon. Well, I thought, I guess I’ll rest that, too. Pain is the body’s signal to stop doing what you’re doing and back off, right? So I didn’t do much that week, trying to recover from these overuse injuries I had.

It took me nearly a year to recover from that. I was much worse after this “rest” than I was before. Now I was having trouble walking. My feet would fall asleep after walking a half a block, then they’d start to hurt. I was getting this weird itching/burning in my hands and feet. I had to give up doing aerobics because my feet hurt too much. I would have a pain someplace for a few days, and then it would move to another place. Like my left knee would be at like a 7 on the pain scale, and then after three or four days it would go away. Then my jaw would hurt. Sometimes I had real trouble eating because I couldn’t open my mouth wide enough to get food in. And then it would go away.

I was getting scared, and beginning to think maybe I had arthritis. The worst possible fate for a violinist. Nothing was helping. I was starting to discover that playing actually made my fingers feel a little better so I started playing again. By now I was having trouble with my wrists as well, at times I was unable to turn them enough to carry a plate on the palm of my hand. My thumbs hurt, too. It took me 20-30 minutes to warm up, but I found I could play pretty well once I did. When I say warm up, I don’t even mean play scales. I had to warm up to playing scales. I would hold the violin, and play on the string closest to the hand one finger at a time- first finger, open string, back and forth until it didn’t hurt anymore. Then I’d do the second finger, and so on. It’s hard to describe, and sometimes I got so impatient with not being able to just play something that I’d quit before I really got to play. The pain made playing not very fun, and sometimes it just wasn’t worth it.

To be continued...