Having HIBM sucks. And there's no cure as yet. I keep reading that there may be a cure soon but there isn't now. Come on, researchers. Get the cure already, or at least get a therapy going on.
This is so less sexy than it seems. My hands don't work when they get cold. Someone always has to put my ipod on my shirt for me. My right pinky doesn't work, nor does my right shoulder or my right quadricep. I try to bike every day to strengthen my quad and my glutes, because that's what my team at NIH told me to do.
Where is the gene therapy? I want an answer, I want a cure.
Thursday, March 03, 2011
Wednesday, February 02, 2011
2/2/11 Random Thoughts
Love it when numbers are in synch like that. So today is February 2nd, and I really don't care whether Phil saw his shadow or not. I think spring will show up whenever it damn well feels like showing up. Punxatawney Phil is a hoax.
Today I'm thinking about small changes, like flossing, always taking one's makeup off at night, drinking coffee with no sugar or milk, stuff like that. I am trying hard to lose 15 pounds. I keep trying to get to the gym but the roads are too poor for that right now. So I am working hard to eat a lot less, and it seems to be working. One plate at dinner, soup for lunch.
My husband is at work right now and pretty soon (as soon as I finish my CLE and get back in compliance) I will be at work, too. I am going to be a tenant lawyer. I am very happy about that. I have to go to court a lot, but that is OK. That's how I will make money. If you're a lawyer, be a lawyer, not a fundraiser.
Today I'm thinking about small changes, like flossing, always taking one's makeup off at night, drinking coffee with no sugar or milk, stuff like that. I am trying hard to lose 15 pounds. I keep trying to get to the gym but the roads are too poor for that right now. So I am working hard to eat a lot less, and it seems to be working. One plate at dinner, soup for lunch.
My husband is at work right now and pretty soon (as soon as I finish my CLE and get back in compliance) I will be at work, too. I am going to be a tenant lawyer. I am very happy about that. I have to go to court a lot, but that is OK. That's how I will make money. If you're a lawyer, be a lawyer, not a fundraiser.
Tuesday, January 04, 2011
Worry
Worry, it turns out, saps you of a lot of energy, which is energy I really need right about now. I don't have energy to blow on things that really don't matter or that I can't control.
I'm doing better at not being so worried about possibilities that are not strong probabilities. I'm happy about that.
No sources, unless you count what spews out of my head as a source. (I don't.)
I'm doing better at not being so worried about possibilities that are not strong probabilities. I'm happy about that.
No sources, unless you count what spews out of my head as a source. (I don't.)
Monday, January 03, 2011
2011
What does it say about us as a people that we so fervently decide to make all sorts of resolutions for the New Year? Time is a manmade construct, it really doesn't change us so much, except that we age.
Nevertheless, I have resolutions. I have to get to the gym several times a week, and work my way back up to biking 20 miles, which is what I used to do. I also have to stop worrying so much. As my husband says, "If you're awake, you're worried." I'd like to stop that. I also need to get some strength training in, and I have to say, I'm not going to any more neurologist appointments. My brain docs are serious buzzkills, and it makes me depressed to see them. They have nothing new to offer me, and I feel it's a complete waste of time and money to go see them. So I'm thinking I'm done with them, and I'll try to go with more Eastern approaches.
Someone told me for acute things, you want Western med. You break an arm, you have a heart attack, you want Western medicine. If you have something chronic, they have no idea what to do with you, unless it's to give you some pill which only addresses symptoms, and not the issue itself, which is when you cross over to the Eastern medicine approach.
Onward, 2011. Let this year be one of health, happiness and joy for everyone.
Nevertheless, I have resolutions. I have to get to the gym several times a week, and work my way back up to biking 20 miles, which is what I used to do. I also have to stop worrying so much. As my husband says, "If you're awake, you're worried." I'd like to stop that. I also need to get some strength training in, and I have to say, I'm not going to any more neurologist appointments. My brain docs are serious buzzkills, and it makes me depressed to see them. They have nothing new to offer me, and I feel it's a complete waste of time and money to go see them. So I'm thinking I'm done with them, and I'll try to go with more Eastern approaches.
Someone told me for acute things, you want Western med. You break an arm, you have a heart attack, you want Western medicine. If you have something chronic, they have no idea what to do with you, unless it's to give you some pill which only addresses symptoms, and not the issue itself, which is when you cross over to the Eastern medicine approach.
Onward, 2011. Let this year be one of health, happiness and joy for everyone.
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