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.