Click:
I've just left the government center, having been told that their website is totally misleading and what I want is in another castle, and decide to try walking to the Board of Elections building where I can vote early. Four blocks later I realize this isn't going to work, and I start heading back. As I'm walking, a brown car pulls alongside me, then climbs halfway up the sidewalk and paces me.
I think I see a female passenger (Eric asked me later why this was important) and it's plain daylight and there are people around, so I'm not terribly concerned; I just move out of easy reach and keep walking. The brown car gets stuck behind another car, and the light turns red, and I cross and start walking back towards my car.
I stop to read the Constitutional Amendments statue-type thing by the sidewalk. Someone hollers behind me, "I love you!!" I'm not sure whether he's talking to me or not, because I don't look back, but I turn the wrong way up a one-way street and the brown car doesn't follow.
Click:
"I want to know if the cystic fibrosis test covers a particular mutation," I tell the woman who answered the hospital's telephone.
"Okay, well, I can see if the system will tell me," she says dubiously. She looks. She finds nothing. "Sorry. But I can give you the number of the lab that does it, MLabs. --Wait. Where are you calling from?"
"My cell phone," I say, cautiously.
"I mean, are you a patient or what?"
I explain my situation. She says, "Okay. Because I'm not supposed to give you medical information if you're not a physician. Like, I can't give you this information because I'm not a physician either. There's a law that says I can't give this to you."
"But I'm not asking for advice," I say. "I just want to know a detail about the procedure."
"I'm sorry, but I can't tell you that. I can't even give you the number. It's my job, I have to obey this law."
I realize there's no use arguing, so I get her to repeat the name of the lab and tell me the city they're located in. I say sweetly, "Then I'll call them myself. Thanks for your help." I call the lab and they're perfectly helpful. I hope that the woman worries all night about whether or not she should have given me the lab's name and city.
Showing posts with label cystic fibrosis. Show all posts
Showing posts with label cystic fibrosis. Show all posts
Tuesday, October 21, 2008
Wednesday, September 17, 2008
Family concerns
I'm currently reading Anne Lamott's Blue Shoe. I picked this up at a thrift store in Ann Arbor while shopping for dyeing equipment. I've been meaning to read Anne Lamott's fiction since I read Bird by Bird, but hadn't until now. I'm not normally much of a mainstream fiction reader...or at least that's not what I gravitate towards, though I do have a few mainstream novels that are some of my favorites to reread. I realized this evening that I rarely read new stuff anymore. Generally I just reread what I have. I wonder if this is why when I do read something new, I tend to gulp it down.
At any rate, this kind of mainstream fiction is definitely not what I would think of as my sort of thing. It's very senses-oriented, descriptive, symbolic, where the events don't matter in and of themselves so much as in their effects on the main character. I have to slow down to read this properly. I remember doing that with the one Charles de Lint book I read, too. Unlike that book, this one is more direct in its message: acceptance, family, duty, love, that flaws are okay and the point is to be a good person, not a perfect one. I feel like I've been very close in my own mind lately, that I need to expand and breathe and relax into my own life a bit. It's an interesting phenomenon. I'm glad I'm reading this book right now.
Dad called me today to discuss James's genetic testing results. James called Monday to tell me about it, disrupting the night's plan of work. I've just now caught up to what I was planning to do then. If I understand him correctly (and he understood the doctor correctly), he's a cystic fibrosis carrier. The doctor says this may or may not be the cause of his pancreatitis; some mutations in the CF gene are codominant (most are recessive, meaning that one mutated gene is okay, but codominant means that one mutated gene will produce some effects, though not as many as having two mutated genes) and CF does involve the pancreas but he almost certainly got the gene from Dad, and Dad's family, and nobody has had James's sort of internal troubles that we know of.
"I don't really know what CF is," he said, so I told him a little about it--bodily defects, lung problems, diabetes, malnutrition, sterility, and constant pneumonia and bronchitis symptoms are what it amounts to, though I didn't go into all that--and that I planned to get myself tested. "James said his doctor said it was mostly passed down on the male side," he said, which is contrary to what I know--cystic fibrosis is an autosomal disease--so I said either he was mistaken or I had misunderstood what the results actually were.
"When is CF diagnosed?" he said, and I said usually at infancy. "Then Abby (James's daughter) probably doesn't have it," he said, in relief. Two of my cousins were already tested when a cousin on their dad's side died of CF, so it's just the last two cousins who need to know--based on current information they have a 25% chance of being carriers. James didn't specifically say to disseminate the information, but he didn't say not to, and it's a family concern.
He's going to tell Mom about it when he's there to explain it--he's on a business trip currently--and I'm going to call when he's home to tell Mom about my test results, that I have a blocked oviduct and I'll be taking medication, so that he can help explain that. I'm not that bad at explaining things but she does seem to understand quickest when Dad tells her things; the habit of thirty years of listening to him, I expect.
I was feeling very anxious and cranky about all this yesterday, which is why I didn't catch up on any work. I'm still out of sorts today, in an odd way I haven't experienced before. It's not quite like PMS (though I'm due for it), and it's not quite like the depression I had in 2004. It's more ephemeral, more trivial, more flat-affect than bad-affect, but it's still been preventing me from doing things. However, I'm hoping that's at an end starting tomorrow.
At any rate, this kind of mainstream fiction is definitely not what I would think of as my sort of thing. It's very senses-oriented, descriptive, symbolic, where the events don't matter in and of themselves so much as in their effects on the main character. I have to slow down to read this properly. I remember doing that with the one Charles de Lint book I read, too. Unlike that book, this one is more direct in its message: acceptance, family, duty, love, that flaws are okay and the point is to be a good person, not a perfect one. I feel like I've been very close in my own mind lately, that I need to expand and breathe and relax into my own life a bit. It's an interesting phenomenon. I'm glad I'm reading this book right now.
Dad called me today to discuss James's genetic testing results. James called Monday to tell me about it, disrupting the night's plan of work. I've just now caught up to what I was planning to do then. If I understand him correctly (and he understood the doctor correctly), he's a cystic fibrosis carrier. The doctor says this may or may not be the cause of his pancreatitis; some mutations in the CF gene are codominant (most are recessive, meaning that one mutated gene is okay, but codominant means that one mutated gene will produce some effects, though not as many as having two mutated genes) and CF does involve the pancreas but he almost certainly got the gene from Dad, and Dad's family, and nobody has had James's sort of internal troubles that we know of.
"I don't really know what CF is," he said, so I told him a little about it--bodily defects, lung problems, diabetes, malnutrition, sterility, and constant pneumonia and bronchitis symptoms are what it amounts to, though I didn't go into all that--and that I planned to get myself tested. "James said his doctor said it was mostly passed down on the male side," he said, which is contrary to what I know--cystic fibrosis is an autosomal disease--so I said either he was mistaken or I had misunderstood what the results actually were.
"When is CF diagnosed?" he said, and I said usually at infancy. "Then Abby (James's daughter) probably doesn't have it," he said, in relief. Two of my cousins were already tested when a cousin on their dad's side died of CF, so it's just the last two cousins who need to know--based on current information they have a 25% chance of being carriers. James didn't specifically say to disseminate the information, but he didn't say not to, and it's a family concern.
He's going to tell Mom about it when he's there to explain it--he's on a business trip currently--and I'm going to call when he's home to tell Mom about my test results, that I have a blocked oviduct and I'll be taking medication, so that he can help explain that. I'm not that bad at explaining things but she does seem to understand quickest when Dad tells her things; the habit of thirty years of listening to him, I expect.
I was feeling very anxious and cranky about all this yesterday, which is why I didn't catch up on any work. I'm still out of sorts today, in an odd way I haven't experienced before. It's not quite like PMS (though I'm due for it), and it's not quite like the depression I had in 2004. It's more ephemeral, more trivial, more flat-affect than bad-affect, but it's still been preventing me from doing things. However, I'm hoping that's at an end starting tomorrow.
Labels:
books,
cystic fibrosis,
family,
genetics,
James is sick
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