Since September, I've lost 45 lbs, none of it in the good way. Post surgery recovery issues, followed by 20 days in December where I was slowly starving to death until I could convince my doctors that I needed a more permanent way of getting food into my system until my mouth started working properly again. I've written about this in detail for a future Kosability diary, so I will not go into it here, but the short version is that my Myasthenia Gravis has rendered me, for the moment, unable to swallow more than a couple tablespoons of food and has left my voice fairly useless.
A fairly complex treatment has given me much of my life back. I'll write about this another time as well, but the short version about that is that since my antibodies are attacking my nervous system, we're taking out all my plasma and replacing it with donor plasma, thus greatly reducing the quantity of "bad" antibodies, allowing my neurtransmitters to work much better than before.
The result? I can walk a distance without needing a wheelchair. I can speak intelligently, if with great effort. I can keep my eyes open for an extended period. I can exercise again.
So I am alive, recovering, and today, for the first time since early December, I returned to work.
We're taking it slowly-- only part time. But in the meantime, I am having fun with my own projects:
Garage Band Experiments by Julie Waters
The Book of Light by Julie Waters
Paths of Flight: complete CD by Julie Waters
I also redid one of my websites. Now my Note cards site has a functional shopping cart (this, sadly, is an improvement over my last redesign), and some very nice new features built into it as well, and cards both old and new:
And I can't tell you guys how happy this makes me. It's intimidating-- I love my job and have missed it dearly, but it's a big, complicated job, and I've been out of touch for months and I was concerned that I'd walk back into a great big mess and... really... everyone is just being incredible about this and I had no idea just how much I missed this until I walked into my office.
And it's funny-- I've lost so much weight that I don't know what to wear. I have some close that fit, and some that are too big and some that sort of fit but not quite but I like too much to give up (and besides, I may regain some of that weight). And when I put on some of my clothes, I feel like a 12 year old trying to dress up like a big girl. And I worry that I look kind of ridiculous, but I think I'm okay.
And I just know this is working. It's not forever. This disease is evil. It can come at you out of nowhere without warning and make you weaker than you can possibly imagine, without doing a single thing to your muscles. And then you can feel perfectly fine. But right here, right now, I know who I am, and how I feel, and even though I still have a lot of healing to do, I feel good-- about myself, about my life and about the fact that I am getting getter.
And right here, right now, I am just so happy.
3:57 PM PT: Something I forgot to mention: that first video is based on an idea I had for a flyer that was going to be a promo for my music performances-- an old Jack Kirby style b&w cartoon with me changing from my "secret" identity as a mild-mannered teacher to "Julie Waters: Super Guitarist" complete with some of the dialogue I included in the video. I still want to make this flyer, but drawing is not even remotely one of my talents and right now I am not in the position to pay anyone to do the work. If anyone wants to barter for it, however, please drop me a msg. I have some very nice photographic prints that I could trade, and I could offer music.