Susan, you need to keep some kind of flow chart, with info on what the medical types are telling you about what they're doing. You'll need to do web research on every aspect.
Nancy (friend/uproad neighbor) checked her info (web) against what the medical types were doing. They'd let her go past the deadlines for blood tests for liver and kidney damage for one of her drugs. As soon's she mentioned it, they did the tests, stat. There was already damage.
This is good advice in general. You must never assume that medicos are on the ball or even that they know what they are talking about. You always need to be proactive and know exactly where you stand and what options you have...and often as not tell the doctors, when necessary fight them when you know you're right and they're wrong. At the same time, yo8u can't believe everything you read, especially on the Internet! You have to be thorough and exercise commonsense. Getting well is going to be a big job.
Puddle, there was a discussion on the last thread about keeping notebooks. Is that the sort of thing you mean?
I don't really agree. Except about keeping a record so things don't get confused. My feeling is that if you don't trust your doctor you should get a new doctor. Of course, I have enough general medical knowledge (after all, at one point I taught biochemistry in medical school) that I have confidence in my ability to judge how good the doctor is. But what I know also makes me very aware of what I don't know, so I rely on my doctor to lay out the options.
I have very high confidence in my current doctor -- a choice I would recommend to anyone in the area. I just hope he doesn't retire while I'm still kicking.
Yeah. But more. I don't know about breast cancer, but I DO know that I knew a hella lot more about Achalasia than my Upper GI specialist did. And the dude at the hospital sent me home with a prescription that had I taken it would have burned the lower esophageal opening. (Potassium pill larger than that opening--it would have sat there, burning . . . . Pharmacist put me onto a better option.) The surgeon was a good deal better, but I still knew more. Radiologist and I were about equal.
Bill, not always an option. There are maybe five doctors in the US that know more than my Achalasia support group about the disease. It's a rare disease, and most GI's won't even see a case in their lifetime. On average, it takes five years to get a correct diagnosis, on average. The Cleveland Clinic is not possible for everyone.
Breast cancer treatment has gotten so complicated that they NEED a person called a navigator. And that navigator let Nancy fall through the cracks.
Pardon my recent absence; been real busy. Managed to survive the weather in San Diego—a bone-chilling 72 degrees during the day.
It’s my weekend to work. Processor tomatoes being harvested—I saw several trucks waiting to be loaded at one farm that were marked “organic.” I haven’t seen any onion fields along my route, but I saw onion trucks headed north empty and south full (big yellow onions). Hay harvested, cotton and corn growing.
I finally hit on a method for a do-it-myself hearing test. Apple’s Garage Band music composition software has a virtual grand piano, so I can play notes on it and note where they fade out. Then I can figure out the frequencies from the piano note table in Wikipedia. Result: my hearing starts to drop off at 1400 cps, is pretty weak at 1550 cps, and I am deaf as a post about 1600 cps (a full octave lower than I was thinking). Unless my memory is playing tricks on me, that is not much worse than when I was in my late twenties (at the Induction Center). I’ll bet an audiologist would be hot to get me hearing aids, but I get along OK. I can’t help but wonder what it must be like for people who can hear ten times that range and more, though. If I could ever hear such sounds I am pretty sure I haven’t been able to since the age of five or six. It’s amazing that I can hear the differences among fancy headphones.
Maybe I will do a little catching up with the blog.
72 degrees? Positively frigid! However did you survive? LOL
Very clever figuring. I don't grok what the numbers mean though. Give me a practical example. can you hear birdsong? Can you hear thunder? Of course, it's almost impossible for me to exp0lain the state of my own vision since, by definition, I mostly don't know what it is I don't see. But I should think hearing is more quantifiable.
Hmmm…I can’t hear the top few notes on our piano—and a grand piano goes up another octave. The highest note I can hear at all is G6, if that means anything to you—and that is faint. Some small songbirds I can’t hear. I can hardly hear our cat meow; usually I just see her mouth open and close. Higher-pitched women’s voices can be difficult for me to hear, especially the high-pitched sounds like “s”. I have difficulty picking voices out of background noise. It helps greatly if I and the person who is speaking to me are facing one another—I must be unconsciously lip-reading, but also having both ears aimed at the person helps. My audio threshold of pain is lower than normal. I strongly suspect that people with normal hearing perceive overtones that add greatly to intelligibility; there is more involved than the base frequency. I might be able to pick out undertones of fundamentals I can’t hear, but there isn’t a lot of information there. Some alarms I can’t hear. The ring of one of our telephones is pitched too high for me to hear unless I am VERY close to it—which made it great for our bedroom when I worked nights. I can’t think of more examples, and understand the ones I gave are not all responsive.
Thanks for being so thorough, Alan. Your description gives me a pretty good idea indeed. G6 is fairly high. The problem with the upper keys on a piano is that, besides being high-pitched, they are also faint, meaning they can sometimes be hard for a person with full hearing to hear. Birdsong is something else again. I'm sorry you don't get the full benefit of this simple treasure.
For many years I've found it all but impossible to carry on conversations in noisy situations - potentially bothersome, but rarely a major problem. Lately, though, common sounds like air conditioners and electric fans have started to be problematic. Pretty much, I do the best I can. No catastrophic miscommunications have resulted so far, though it's probably just a matter of time. It is very difficult if the person I'm talking to has his back to me. In my case it's not a question of lip reading, but facing is much better.
From what you say, it seems your hearing loss is similar to Dad's. He also has trouble with high-pitched sounds, including some human voices. He has never said he has trouble with cat voices. He got hearing aids in the winter and they seem to help. At first he was touchingly enthusiastic about all the small, background type sounds he could suddenly hear. We've noticed though that he doesn't always use the hearing aids. Maybe sensory overload? In any case, as long as your normal, daily functioning isn't impaired, there's probably no need for you to get hearing aids.
I had to concentrate to hear the upper notes in the Carolina chickadee's song. Those higher notes seemed much fainter, which didn't help. You may also have noticed that the black capped chickadee's song itself is lower pitched than the Carolina chickadee's. Interesting and instructive exercise.
Despite my advancing age, I can still hear all the songs including the kinglet. But I still sometimes have trouble holding a conversation when there are other conversations going on around me. Probably much more to do with conversation than hearing.
Susan--Just read your post and succeeding ones. Yes, hello Mr. Dog. (I hadn’t heard that one before, but will remember it for sure.) Yes, after the initial shock, down to business. A notebook isn’t a bad idea at all; I might have profited by having one a couple of times, but no big in my case. (Not so unusual a problem as puddle’s, certainly.) To be in basically good health is a BIG plus. Many are not, and it greatly complicates things. Chemo, if it comes, is variable, and radiation ditto; I got off relatively easy. Afterwards selective amnesia is typical—one has only a vague intellectual memory of the rough parts; it must be an inherent mechanism of mental self-protection. Mind your food intake; it is easy to add weight, although that is better than losing it. {{{Hugz.}}}
I've bought a CD series (vols 1 and 2 have arrived, waiting for vol. 3) called Tube Tunes, TV theme songs from the '70s and '80s. Great fun.
On another music-related note (Ahem, yes, well...) I'm hard at work on a pair of quizzes, "Cat's Musical Miscellany: The 70s" and the imaginatively titled "Cat's Musical Miscellany: The 70s Part 2." It is highly bothersome, when playing mixed games (as opposed to individual quizzes), to constantly be confronted with questions on The Rolling Stones, grunge bands (whatever exactly they are) and Green Day (which is apparently a current Australian band). I did once find Jazz as a special catagory in the Global challenge, and every so often there are special categories on Musicals or Music in TV and Movies, but even those seem usually to contain a preponderance of questions on the '90s and later. There *are* quizzes at Fun Trivia that deal with music other than Hard Rock or Heavy Metal - I've played a few and created a few more. But somehow questions from those quizzes don't seem to be selected for the mixed games very often. Anyhow, I've started the series with intentions of eventually extending it back through the decades. Donno if I'll make it to the '20s, but that's the tentative goal. But of course I'm starting with my favorite musical decade.
To bring things back to politics: An editorial in toady's conservative-leaning Chicago Tribune talked about "Boehmer's Misguided Lawsuit." It started something like, "Let's get this straight. Boehmer, whose party wants to repeal Obamacare, is suing Obama for not fully implementing Obamacare."
Howard is the flower of the Democratic Party.
ReplyDeleteSusan, you need to keep some kind of flow chart, with info on what the medical types are telling you about what they're doing. You'll need to do web research on every aspect.
ReplyDeleteNancy (friend/uproad neighbor) checked her info (web) against what the medical types were doing. They'd let her go past the deadlines for blood tests for liver and kidney damage for one of her drugs. As soon's she mentioned it, they did the tests, stat. There was already damage.
This is good advice in general. You must never assume that medicos are on the ball or even that they know what they are talking about. You always need to be proactive and know exactly where you stand and what options you have...and often as not tell the doctors, when necessary fight them when you know you're right and they're wrong. At the same time, yo8u can't believe everything you read, especially on the Internet! You have to be thorough and exercise commonsense. Getting well is going to be a big job.
DeletePuddle, there was a discussion on the last thread about keeping notebooks. Is that the sort of thing you mean?
I don't really agree. Except about keeping a record so things don't get confused. My feeling is that if you don't trust your doctor you should get a new doctor. Of course, I have enough general medical knowledge (after all, at one point I taught biochemistry in medical school) that I have confidence in my ability to judge how good the doctor is. But what I know also makes me very aware of what I don't know, so I rely on my doctor to lay out the options.
DeleteI have very high confidence in my current doctor -- a choice I would recommend to anyone in the area. I just hope he doesn't retire while I'm still kicking.
Yeah. But more. I don't know about breast cancer, but I DO know that I knew a hella lot more about Achalasia than my Upper GI specialist did. And the dude at the hospital sent me home with a prescription that had I taken it would have burned the lower esophageal opening. (Potassium pill larger than that opening--it would have sat there, burning . . . . Pharmacist put me onto a better option.) The surgeon was a good deal better, but I still knew more. Radiologist and I were about equal.
DeleteBill, not always an option. There are maybe five doctors in the US that know more than my Achalasia support group about the disease. It's a rare disease, and most GI's won't even see a case in their lifetime. On average, it takes five years to get a correct diagnosis, on average. The Cleveland Clinic is not possible for everyone.
DeleteBreast cancer treatment has gotten so complicated that they NEED a person called a navigator. And that navigator let Nancy fall through the cracks.
Pardon my recent absence; been real busy. Managed to survive the weather in San Diego—a bone-chilling 72 degrees during the day.
ReplyDeleteIt’s my weekend to work. Processor tomatoes being harvested—I saw several trucks waiting to be loaded at one farm that were marked “organic.” I haven’t seen any onion fields along my route, but I saw onion trucks headed north empty and south full (big yellow onions). Hay harvested, cotton and corn growing.
I finally hit on a method for a do-it-myself hearing test. Apple’s Garage Band music composition software has a virtual grand piano, so I can play notes on it and note where they fade out. Then I can figure out the frequencies from the piano note table in Wikipedia. Result: my hearing starts to drop off at 1400 cps, is pretty weak at 1550 cps, and I am deaf as a post about 1600 cps (a full octave lower than I was thinking). Unless my memory is playing tricks on me, that is not much worse than when I was in my late twenties (at the Induction Center). I’ll bet an audiologist would be hot to get me hearing aids, but I get along OK. I can’t help but wonder what it must be like for people who can hear ten times that range and more, though. If I could ever hear such sounds I am pretty sure I haven’t been able to since the age of five or six. It’s amazing that I can hear the differences among fancy headphones.
Maybe I will do a little catching up with the blog.
—Alan
72 degrees? Positively frigid! However did you survive? LOL
DeleteVery clever figuring. I don't grok what the numbers mean though. Give me a practical example. can you hear birdsong? Can you hear thunder? Of course, it's almost impossible for me to exp0lain the state of my own vision since, by definition, I mostly don't know what it is I don't see. But I should think hearing is more quantifiable.
Hmmm…I can’t hear the top few notes on our piano—and a grand piano goes up another octave. The highest note I can hear at all is G6, if that means anything to you—and that is faint. Some small songbirds I can’t hear. I can hardly hear our cat meow; usually I just see her mouth open and close. Higher-pitched women’s voices can be difficult for me to hear, especially the high-pitched sounds like “s”. I have difficulty picking voices out of background noise. It helps greatly if I and the person who is speaking to me are facing one another—I must be unconsciously lip-reading, but also having both ears aimed at the person helps. My audio threshold of pain is lower than normal. I strongly suspect that people with normal hearing perceive overtones that add greatly to intelligibility; there is more involved than the base frequency. I might be able to pick out undertones of fundamentals I can’t hear, but there isn’t a lot of information there. Some alarms I can’t hear. The ring of one of our telephones is pitched too high for me to hear unless I am VERY close to it—which made it great for our bedroom when I worked nights. I can’t think of more examples, and understand the ones I gave are not all responsive.
DeleteEek! Work!
—Alan
Thanks for being so thorough, Alan. Your description gives me a pretty good idea indeed. G6 is fairly high. The problem with the upper keys on a piano is that, besides being high-pitched, they are also faint, meaning they can sometimes be hard for a person with full hearing to hear. Birdsong is something else again. I'm sorry you don't get the full benefit of this simple treasure.
DeleteFor many years I've found it all but impossible to carry on conversations in noisy situations - potentially bothersome, but rarely a major problem. Lately, though, common sounds like air conditioners and electric fans have started to be problematic. Pretty much, I do the best I can. No catastrophic miscommunications have resulted so far, though it's probably just a matter of time. It is very difficult if the person I'm talking to has his back to me. In my case it's not a question of lip reading, but facing is much better.
From what you say, it seems your hearing loss is similar to Dad's. He also has trouble with high-pitched sounds, including some human voices. He has never said he has trouble with cat voices. He got hearing aids in the winter and they seem to help. At first he was touchingly enthusiastic about all the small, background type sounds he could suddenly hear. We've noticed though that he doesn't always use the hearing aids. Maybe sensory overload? In any case, as long as your normal, daily functioning isn't impaired, there's probably no need for you to get hearing aids.
I had to concentrate to hear the upper notes in the Carolina chickadee's song. Those higher notes seemed much fainter, which didn't help. You may also have noticed that the black capped chickadee's song itself is lower pitched than the Carolina chickadee's. Interesting and instructive exercise.
DeleteDespite my advancing age, I can still hear all the songs including the kinglet. But I still sometimes have trouble holding a conversation when there are other conversations going on around me. Probably much more to do with conversation than hearing.
Delete... with concentration than ...
DeleteThe kinglet is lovely, isn't it? I'd never heard that one before.
DeleteSusan--Just read your post and succeeding ones. Yes, hello Mr. Dog. (I hadn’t heard that one before, but will remember it for sure.) Yes, after the initial shock, down to business. A notebook isn’t a bad idea at all; I might have profited by having one a couple of times, but no big in my case. (Not so unusual a problem as puddle’s, certainly.) To be in basically good health is a BIG plus. Many are not, and it greatly complicates things. Chemo, if it comes, is variable, and radiation ditto; I got off relatively easy. Afterwards selective amnesia is typical—one has only a vague intellectual memory of the rough parts; it must be an inherent mechanism of mental self-protection. Mind your food intake; it is easy to add weight, although that is better than losing it. {{{Hugz.}}}
ReplyDelete—Alan
I've bought a CD series (vols 1 and 2 have arrived, waiting for vol. 3) called Tube Tunes, TV theme songs from the '70s and '80s. Great fun.
ReplyDeleteOn another music-related note (Ahem, yes, well...) I'm hard at work on a pair of quizzes, "Cat's Musical Miscellany: The 70s" and the imaginatively titled "Cat's Musical Miscellany: The 70s Part 2." It is highly bothersome, when playing mixed games (as opposed to individual quizzes), to constantly be confronted with questions on The Rolling Stones, grunge bands (whatever exactly they are) and Green Day (which is apparently a current Australian band). I did once find Jazz as a special catagory in the Global challenge, and every so often there are special categories on Musicals or Music in TV and Movies, but even those seem usually to contain a preponderance of questions on the '90s and later. There *are* quizzes at Fun Trivia that deal with music other than Hard Rock or Heavy Metal - I've played a few and created a few more. But somehow questions from those quizzes don't seem to be selected for the mixed games very often. Anyhow, I've started the series with intentions of eventually extending it back through the decades. Donno if I'll make it to the '20s, but that's the tentative goal. But of course I'm starting with my favorite musical decade.
Cat—bird song examples for grockification just added above.
Delete—Alan
grockification ! FOTCROTFL I love it! Now, how can I work it into daily conversation?
DeleteTo bring things back to politics: An editorial in toady's conservative-leaning Chicago Tribune talked about "Boehmer's Misguided Lawsuit." It started something like, "Let's get this straight. Boehmer, whose party wants to repeal Obamacare, is suing Obama for not fully implementing Obamacare."
ReplyDeleteTypical!
Delete