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FF Sparks (Casual)

[General] Life Update

Okay, I've been absent from LJ for some time, and I had said something about higher-stress lately, so I figure it's only fair to finally update friends on what's been going on.

As background, my family -- on both sides -- has a history of auto-immune issues. Primarily rheumatoid arthritis, where -- basically -- your own immune system attacks your joints. My mother, aunt, maternal grandmother and maternal great-grandmother all have or had fairly significant rheumatoid arthritis, and my paternal grandmother does as well. Some years ago, my mother also developed Sjogren's syndrome, where your immune system basically attacks your own tear ducts and hair follicles. (Vastly simplified, but...)

Some time ago, my mother's health began abruptly to fail. She began to find she was having more and more trouble concentrating, her appetite vanished entirely and it was a trial to remember to eat, her energy was just slipping away, and so on. Even though she tried to exercise and eat, she was losing muscle tone. She tried various things -- dietary changes, all kinds of tests -- but nothing really seemed to bear out.

Finally, the doctors figured out what it was. Her immune system had begun attacking pretty much everything; muscle fiber, digestive system, nervous system and so on. The trouble concentrating was, among other reasons, that her immune system had basically eaten her inner ear, and a lot more unconscious brainpower was going to just keeping her balance. Appetite issues were the digestive system. And so on.

She reached the point that she needed a cane to get around, and basically her energy was just draining progressively away. Every month or so was noticeably worse than the previous, to the point that people who hadn't seen her in a few months quietly were always struck and deeply worried on seeing her for the first time in a while.

And it appeared that the whole thing was going to just continue to spiral downwards.

But her doctor decided to try something -- not actually FDA-approved, I note -- and put her on cellcept. This is a drug which is usually used for organ transplant patients, to prevent rejection; it basically turned her immune system off.

At first she was horribly exhausted by the drug, but as her immune system stopped attacking her own body, she found some of her energy returned. She's developed an appetite again, and the energy to work in her garden and so on. She finished her oshô training at Cho Bo Ji, the Zen Buddhist temple she is a monk at. Genki-roshi, her teacher and the original abbot of the temple, returned from Montana for the ceremony. (I took a few pictures, even; those, and more of my overall pictures from the event, are up on the Cho Bo Ji website.)

So, her quality of life has improved. And while the existing damage cannot be repaired, for now it seems not to be getting /worse/, and the return of energy and /life/ has been an amazing improvement.

We're all relieved, of course. It's not a complete vanishing of the stress, as she's still incredibly vulnerable to any cold or flu or whatever else, since she basically no longer has a functioning immune system as long as she's on this drug. But it's still so much better than the previous alternative was...

So, that stress is at least reduced, even if not completely eliminated. I feel a little like I'm slowly surfacing and finding the time to actually look at things outside of family and work again; over the past few weeks I've been slowly returning to my writing, among other things. I feel like my photography stalled and, honestly, became not that interesting lately; with a little more time and energy, I've turned to doing some film photography again (Canon EOS K2, so I can use my same lenses) and trying to push my limits there.

Of course, even as my writing and -- to some degree -- my efforts to improve my photography got put aside, I've kept riding. To some degree, my big dopey quadruped is what's kept me sane; I've progressed to half-leasing Derby, and am now hacking on Saturdays. (A 'hack session' is riding the horse freeform, no instructor supervision.) I've been working lately on precision in gaits; keeping a canter stride at the right length to be exactly two strides between /these/ two markers, and three between /those/, and so on. Even gotten back into a little bit of basic cross-bar work, now that it's warming up again.

Of course, now I'm looking down the barrel of my 30th birthday in two weeks (yike), and so I'm feeling (again) a bit like I need to think about where I am and what I'm doing in life. Should I try to find the time to study photography as well? Start really seriously looking for land to keep horses on? Etc. I suppose there's still no rush, since I'm in a good place right now, but... I guess 30 messes with your head.

I also know there's a few people (bluerain, in particular) who I dropped the ball on getting together with, and now that I've mostly dug out of all these things, I'm going to try and catch up with folks. Sorry I've been a little less 'accessible' lately, but family and everything else just sort of consumed much of my mental and emotional energy.


I hope things continue to get better as your mother's energy increases, and your own stress goes away. I know you've had a tough time of it these last six months, and all of us who know you are sending our best wishes your way.