It's amazing how little time severe, chronic pain takes to send me into a spiral of fear, depression, and anger. (About three days, in case you were wondering.) I won't bore you with an encore recitation of why and how, but there's some serious conditioned response going on here.
Tomorrow I see the midwives (again). I predict they will a) test me for pre-eclampsia, which will be negative; b) express puzzlement about Weird Headache Shit; and c) suggest a Neti Pot. At which point I may start throwing things and screaming. On the bright side, I took half a long-expired vi.codin and did not break out in hives all over! (I'm also not sure it helped.)
You may also recall that the main reason I didn't want to ever be pregnant again was the two years of illness, pain, and chronic headache. I seriously can't do this for nine more weeks.
Showing posts with label Healthcare. Show all posts
Showing posts with label Healthcare. Show all posts
Friday, October 31, 2014
Friday, September 05, 2014
Five Minute Blogging: Feelings on Professional Work, and on Breastfeeding
1) I can't quite articulate why, but it's like a giant weight has lifted, simply because I have work for which I receive both respect and money. My education is actually useful for something! I can stop worrying that I'll never work again! (I still worry that I may end up adjuncting for almost-forever. Still.)
2) Someone asked if I was planning on going to the local LLL meeting, like, ever. Errrrrrgh. I tried to tactfully explain that, in fact, I had some serious medical problems last time, and treating them led to permanent serious medical problems. And that a doctor/lactation consultant, whose specialty is serious medical problems in breastfeeding, told me that I both could and should stop. Also that I don't want well-meaning people running through "Did you try heat? How about probiotics? Pumping? Fenugreek? ECHINACEA?" I tried all of those for which there was any evidence whatsoever, I ended up really, really sick as a result of not weaning my child, which in retrospect was the correct choice; too late now - and I have NO INTENTION of going through that again. When I say that if I get mastitis even once, I'm done, this is based on years of painful experiences and consultation with three specialist MDs and every piece of scientific literature ever published on the subject. And I don't want to try echinacea/ acupuncture/ traditional Chinese medicine/ homeopathy/ whatever. NO.
(Yes, I get a little annoyed about this one.)
2) Someone asked if I was planning on going to the local LLL meeting, like, ever. Errrrrrgh. I tried to tactfully explain that, in fact, I had some serious medical problems last time, and treating them led to permanent serious medical problems. And that a doctor/lactation consultant, whose specialty is serious medical problems in breastfeeding, told me that I both could and should stop. Also that I don't want well-meaning people running through "Did you try heat? How about probiotics? Pumping? Fenugreek? ECHINACEA?" I tried all of those for which there was any evidence whatsoever, I ended up really, really sick as a result of not weaning my child, which in retrospect was the correct choice; too late now - and I have NO INTENTION of going through that again. When I say that if I get mastitis even once, I'm done, this is based on years of painful experiences and consultation with three specialist MDs and every piece of scientific literature ever published on the subject. And I don't want to try echinacea/ acupuncture/ traditional Chinese medicine/ homeopathy/ whatever. NO.
(Yes, I get a little annoyed about this one.)
Friday, May 02, 2014
On Illness and Identity
Ever since I was pregnant with Tatoe (he's two and a half now), some moderately bad health things have been happening. They are mostly stabilized (solution 1: don't have any more children), but I have also, for the last three years, woken up in pain somewhere between every day and twice a week. This has done bad things to my little hamster brain. I don't know what the proper psychological term is; some disastrous mix of aversive conditioning, catastrophizing, and learned helplessness.
Some of it can be managed by being incredibly strict and rigid - specifically, food. Words can hardly express how unpleasant I find my current relationship with food - one of fear, resentment, and boredom in equal parts, with occasional sleepless red-ant-gnawed misery, combined with a reasonable but socially awkward reluctance to eat anything anyone else cooks, ever.* I am always afraid it is going to get worse (even though it's not, right now) and then I literally don't know what I would do. I feel helpless because I have a realistic belief that this may never get any better.
When I am in pain, I fear it happening over and over far out of proportion to the actual pain. As I've had histamine reactions** to at least two opiates, my pain is never 'adequately managed'. I am afraid that my image of myself as a strong, healthy, competent person is wrong, has changed, will never be true again. I try to tell myself that my fear spiral is not rational. I've mostly stopped getting sick all the time. That's better. I don't wake up in pain every day. I have less trouble sleeping. I stopped losing weight. That's better too. But still, every time it gets out of equilibrium, I have an irrational, panicked fear that it will never go back.
(I am not actually as depressed as this sounds. I just had a really bad week.)
.
* Aside from my mother, my sister, and Nicole, who lives 900 miles away now.
** It turns out that "I want to scratch my entire skin off and I cannot sleep for more than five minutes" is actually worse than just being in pain.
Some of it can be managed by being incredibly strict and rigid - specifically, food. Words can hardly express how unpleasant I find my current relationship with food - one of fear, resentment, and boredom in equal parts, with occasional sleepless red-ant-gnawed misery, combined with a reasonable but socially awkward reluctance to eat anything anyone else cooks, ever.* I am always afraid it is going to get worse (even though it's not, right now) and then I literally don't know what I would do. I feel helpless because I have a realistic belief that this may never get any better.
When I am in pain, I fear it happening over and over far out of proportion to the actual pain. As I've had histamine reactions** to at least two opiates, my pain is never 'adequately managed'. I am afraid that my image of myself as a strong, healthy, competent person is wrong, has changed, will never be true again. I try to tell myself that my fear spiral is not rational. I've mostly stopped getting sick all the time. That's better. I don't wake up in pain every day. I have less trouble sleeping. I stopped losing weight. That's better too. But still, every time it gets out of equilibrium, I have an irrational, panicked fear that it will never go back.
(I am not actually as depressed as this sounds. I just had a really bad week.)
.
* Aside from my mother, my sister, and Nicole, who lives 900 miles away now.
** It turns out that "I want to scratch my entire skin off and I cannot sleep for more than five minutes" is actually worse than just being in pain.
Friday, May 17, 2013
Book Review: ALL NATURAL by Nathanael Johnson
I reserved our public library's copy of this book because the author is a friend of a friend, who told me I might like it. Here's the verdict: I do! I like it immensely! I am thinking of buying a copy for my mother, since she would also enjoy it!
(Nobody paid me anything to write this. I sent the author a message once, but we are largely unacquainted.)
The book starts out with a very amusing recounting of the author's childhood, being raised bywolves radical back-to-nature types. (They make my mother's Vegetarian Nut Loaf look positively mainstream.) He meets his future wife, the daughter of a surgeon, and they marry and are soon expecting a child, at which point we segue into a chapter on birth in America.
I could have written this chapter. My favorite line: "I was looking for something more like No Nonsense Evidence-Based Midwifery." Ah, Bug's midwives, of "a zero-transfer C-section rate is unrealistic and dangerous" fame! He goes into the statistics of C-sections, maternal morbidity and mortality, and ensuing complications carefully, in detail, and in a very understandable manner - and also talks about the bad outcomes that can happen in the absence of medical care, and the fine line between lifesaving interventions and overcautious practices that harm patients (like routine continuous fetal monitoring).
The next chapters are about raw milk, nutrition, vegetables, sugar (really, doesn't affect immunity; nicely dissected and taken down, with a fine understanding of the phrase "There is no evidence."), pork farming, immunity, vaccines, the environment. These subjects are all handled delicately and in a very neutral manner with no proselytizing.
The last chapter is about medicine, and how to balance lifesaving treatments with unnecessary testing and intervention. The author shares an anecdote from his mother, who intelligently researches a possible hepatitis infection, and insists on a second test because the first one has a high false-positive rate. He also relates his own bout of appendicitis. He talks about primary care, emergency medicine, and end-of-life care, our problems with dealing with the root causes of... well, everything - and one of medicine's great failures, that of treating the symptoms. The last chapter is a nice bookend to the first- C-sections and suicides, birth and death.
There are 19 pages of closely-spaced endnotes. A lot of research went into this book. I would like to add I've found no inaccuracies in this book, which is high praise from this pedantic, proofreading-maniac of a scientist. In some cases, I would perhaps have liked to see a stronger opinion come through (if you want to read about vaccines go look up Andrew Wakefield's financial interest in scaring people, and the reasons for his medical license being revoked in Great Britain). Some subjects could perhaps use a bit more depth; for example, the author talks about the 'immunity hypothesis', that more dirt and germs prevent autoimmune disease, and cites the rise of things like asthma in developed countries- but he doesn't mention the role of pollution, or of cheap and accurate sequencing in diagnosis. On the other hand, there's only so many pages in a book, and the author clearly doesn't want to be prescriptive or evangelical. He is leading you through his journey of exploration.
If you have a friend who thinks that ridiculous, stupid, inaccurate, dangerous Sears book is the gospel, this will not convince him or her. If you know someone who has an actual inquring mind - especially people who are not trained as scientists- this is perfect. As for you, dear readers, you should all go read it immediately.
* Did you know this strain has a stable plasmid with a horizontally-transferred Shigella toxin, which binds to ribosomes, and that's why it's so toxic? I wrote a paper about it in college.
(Nobody paid me anything to write this. I sent the author a message once, but we are largely unacquainted.)
The book starts out with a very amusing recounting of the author's childhood, being raised by
I could have written this chapter. My favorite line: "I was looking for something more like No Nonsense Evidence-Based Midwifery." Ah, Bug's midwives, of "a zero-transfer C-section rate is unrealistic and dangerous" fame! He goes into the statistics of C-sections, maternal morbidity and mortality, and ensuing complications carefully, in detail, and in a very understandable manner - and also talks about the bad outcomes that can happen in the absence of medical care, and the fine line between lifesaving interventions and overcautious practices that harm patients (like routine continuous fetal monitoring).
The next chapters are about raw milk, nutrition, vegetables, sugar (really, doesn't affect immunity; nicely dissected and taken down, with a fine understanding of the phrase "There is no evidence."), pork farming, immunity, vaccines, the environment. These subjects are all handled delicately and in a very neutral manner with no proselytizing.
The last chapter is about medicine, and how to balance lifesaving treatments with unnecessary testing and intervention. The author shares an anecdote from his mother, who intelligently researches a possible hepatitis infection, and insists on a second test because the first one has a high false-positive rate. He also relates his own bout of appendicitis. He talks about primary care, emergency medicine, and end-of-life care, our problems with dealing with the root causes of... well, everything - and one of medicine's great failures, that of treating the symptoms. The last chapter is a nice bookend to the first- C-sections and suicides, birth and death.
There are 19 pages of closely-spaced endnotes. A lot of research went into this book. I would like to add I've found no inaccuracies in this book, which is high praise from this pedantic, proofreading-maniac of a scientist. In some cases, I would perhaps have liked to see a stronger opinion come through (if you want to read about vaccines go look up Andrew Wakefield's financial interest in scaring people, and the reasons for his medical license being revoked in Great Britain). Some subjects could perhaps use a bit more depth; for example, the author talks about the 'immunity hypothesis', that more dirt and germs prevent autoimmune disease, and cites the rise of things like asthma in developed countries- but he doesn't mention the role of pollution, or of cheap and accurate sequencing in diagnosis. On the other hand, there's only so many pages in a book, and the author clearly doesn't want to be prescriptive or evangelical. He is leading you through his journey of exploration.
If you have a friend who thinks that ridiculous, stupid, inaccurate, dangerous Sears book is the gospel, this will not convince him or her. If you know someone who has an actual inquring mind - especially people who are not trained as scientists- this is perfect. As for you, dear readers, you should all go read it immediately.
* Did you know this strain has a stable plasmid with a horizontally-transferred Shigella toxin, which binds to ribosomes, and that's why it's so toxic? I wrote a paper about it in college.
Thursday, March 07, 2013
Doctor Doctor
I am finally switching to a different primary care provider. In fact, I am switching to the MD who sees my tots - in four years, he's never done anything awful, so hey! And then someone who's a lady for my lady parts, because I just can't. I like the guy, I like how he takes care of my kids, and I want to keep my pants on.
But anyhow. I'm surely a total pain in the tuchus when it comes to doctors.
I want someone who's as smart as me, and who doesn't commit cardinal sins of biology. So when I express concern about a side effect, or say that a registry is too small to detect more than a 5% effect, I want them to understand that. And for example, a MD once told my spouse that T cells secrete antibodies to the bloodstream, which does NOT inspire confidence. (They don't. And I paraphrase good ol' Bruce: "Antibodies are synthesized exclusively by B cells.")
I want someone who will consider my well-researched preferences carefully, and not treat me like an idiot. I'm not expressing a concern about antibiotic resistance* because I read something on Yahoo News, I'm telling you I just read twenty articles about clearance time for Streptococcus. And, while I realize doctors do deal with a lot of people who think homeopathy is effective and vaccines cause autism, I am not one of those people.
And I don't want my doctor to be one of those people.
And finally, I want a doctor who won't just do what I want. My diagnostic expertise is limited to: migraine, sinus infection, sprained ankle, asthma exacerbation. (That is, these are the things I can reliably diagnose in myself.) Everything else, I want them to listen to me, and then diagnose and prescribe their own damn selves. I can't tell you how many doctors have asked me what drug I wanted, just to get rid of me.
* And in fact I was correct: 11 weeks of drug-resistant sinus infection and counting. Yep, told you so.
But anyhow. I'm surely a total pain in the tuchus when it comes to doctors.
I want someone who's as smart as me, and who doesn't commit cardinal sins of biology. So when I express concern about a side effect, or say that a registry is too small to detect more than a 5% effect, I want them to understand that. And for example, a MD once told my spouse that T cells secrete antibodies to the bloodstream, which does NOT inspire confidence. (They don't. And I paraphrase good ol' Bruce: "Antibodies are synthesized exclusively by B cells.")
I want someone who will consider my well-researched preferences carefully, and not treat me like an idiot. I'm not expressing a concern about antibiotic resistance* because I read something on Yahoo News, I'm telling you I just read twenty articles about clearance time for Streptococcus. And, while I realize doctors do deal with a lot of people who think homeopathy is effective and vaccines cause autism, I am not one of those people.
And I don't want my doctor to be one of those people.
And finally, I want a doctor who won't just do what I want. My diagnostic expertise is limited to: migraine, sinus infection, sprained ankle, asthma exacerbation. (That is, these are the things I can reliably diagnose in myself.) Everything else, I want them to listen to me, and then diagnose and prescribe their own damn selves. I can't tell you how many doctors have asked me what drug I wanted, just to get rid of me.
* And in fact I was correct: 11 weeks of drug-resistant sinus infection and counting. Yep, told you so.
Thursday, January 24, 2013
FMB: Cancer Foundations
You know what makes me steam at the ears? The phrase "a cure for cancer". There is not *A* cure for cancer, because
there is not ONE cancer. Even a recurrence often has a different
mutation set. You might as well say "a cure for America's schools."
Sure, all several thousand independently governed, wildly differing districts: they can all be fixed exactly
the same way.
I'm feeling belligerent, so I'm also going to tell you that I think it's a terrible idea to give money to cancer foundations in the hopes that they will find 'a cure for (X) cancer'. If I had enough time I'd direct you to the Pancreatic Cancer Foundation's annual funding summary, the NIH's Orphan Diseases program, the Gates Foundation's initiatives for real translational research, and so on. But I have five minutes. So.
Cancer foundations do many effective things: they promote screening (of variable effectiveness, mind you), they give money to help out patients, and they even fund a little research. Do you know how much research costs? One year of a postdoc's grant runs about $45,000 in salary, $8000 in health insurance, up to 100% overhead (let's say 50%, so $23,000) and usually a materials grant of up to half the salary ($22,000). So $100,000 will buy you one year of a postdoc doing research, and most papers take a couple years of work to come out (and a lot more than that in materials and equipment costs). $300,000 will buy you one paper, and the chances of that leading to a disease treatment are - let's be generous! - 1 in 1000.
Dr. S has a grant from a cancer foundation. Chances of his work leading to a disease treatment in 10 years or less? 0%. Believe me: I know exactly what he does, and none of his Things are drug targets. Or gene therapy targets. It might, one day, improve testing efficiency in predicting the success of treating a non-cancer-related condition. That's it.
I don't ever give money to cancer foundations, because if I want to help someone whose family is struggling with cancer, I'll give them a gift card, or a dinner, or some babysitting. The cancer foundations are throwing pennies in the well and wishing, when it comes to research.
I'm feeling belligerent, so I'm also going to tell you that I think it's a terrible idea to give money to cancer foundations in the hopes that they will find 'a cure for (X) cancer'. If I had enough time I'd direct you to the Pancreatic Cancer Foundation's annual funding summary, the NIH's Orphan Diseases program, the Gates Foundation's initiatives for real translational research, and so on. But I have five minutes. So.
Cancer foundations do many effective things: they promote screening (of variable effectiveness, mind you), they give money to help out patients, and they even fund a little research. Do you know how much research costs? One year of a postdoc's grant runs about $45,000 in salary, $8000 in health insurance, up to 100% overhead (let's say 50%, so $23,000) and usually a materials grant of up to half the salary ($22,000). So $100,000 will buy you one year of a postdoc doing research, and most papers take a couple years of work to come out (and a lot more than that in materials and equipment costs). $300,000 will buy you one paper, and the chances of that leading to a disease treatment are - let's be generous! - 1 in 1000.
Dr. S has a grant from a cancer foundation. Chances of his work leading to a disease treatment in 10 years or less? 0%. Believe me: I know exactly what he does, and none of his Things are drug targets. Or gene therapy targets. It might, one day, improve testing efficiency in predicting the success of treating a non-cancer-related condition. That's it.
I don't ever give money to cancer foundations, because if I want to help someone whose family is struggling with cancer, I'll give them a gift card, or a dinner, or some babysitting. The cancer foundations are throwing pennies in the well and wishing, when it comes to research.
Wednesday, February 01, 2012
Lack of Sympathy
My dear spouse is almost never sick. He is virtually never ever sick enough to stay home from work.
I, on the other hand, am a walking attack of plague and allergy. For five days in a row, I have enjoyed a sensation like 10,000 tiny needle-footed ants walking over my body. As you might imagine, this makes it exceedingly hard to sleep. In fact, it keeps me awake through a dose of Benadryl that should fell a horse. So I have been laying awake for three or four hours every night full of pain, exhaustion, misery, and frustrated rage.
And then Dr. S had the effrontery to be annoyed when I asked him to go into work a little late. Because I didn't think I could take care of the children on three hours' sleep.
(I'm off to the doctor later so they can tell me to drink more water and moisturize. Inevitably. Gosh! I surely DIDN'T THINK OF THAT MYSELF.)
I, on the other hand, am a walking attack of plague and allergy. For five days in a row, I have enjoyed a sensation like 10,000 tiny needle-footed ants walking over my body. As you might imagine, this makes it exceedingly hard to sleep. In fact, it keeps me awake through a dose of Benadryl that should fell a horse. So I have been laying awake for three or four hours every night full of pain, exhaustion, misery, and frustrated rage.
And then Dr. S had the effrontery to be annoyed when I asked him to go into work a little late. Because I didn't think I could take care of the children on three hours' sleep.
(I'm off to the doctor later so they can tell me to drink more water and moisturize. Inevitably. Gosh! I surely DIDN'T THINK OF THAT MYSELF.)
Saturday, June 18, 2011
Skepticism
The point of the elevator/door story is, of course, that scientists are trained skeptics.
It never fails to amaze me when people just take their doctor's word for something insane. I could give examples all day ("Your kid won't use a fork! He must have something wrong with him!!" Or... he's two). Or when they simply believe something insane (vaccines cause autism! sinus infections are contagious! homeopathy is not the placebo effect!) that is contrary to all evidence.
I know that I spent ten years being trained to evaluate evidence. I know that my already-high level of skepticism is now at the top of the scale, and that respect for authority, including medical, is ingrained in kindergarten, along with standing-in-line.*
But I always think of that line from The Wizard of Oz: "But they have one thing you haven't got: a diploma."
*Such a truly American thing, our patient and orderly line-forming. Or possibly, legacy of British Empire.
It never fails to amaze me when people just take their doctor's word for something insane. I could give examples all day ("Your kid won't use a fork! He must have something wrong with him!!" Or... he's two). Or when they simply believe something insane (vaccines cause autism! sinus infections are contagious! homeopathy is not the placebo effect!) that is contrary to all evidence.
I know that I spent ten years being trained to evaluate evidence. I know that my already-high level of skepticism is now at the top of the scale, and that respect for authority, including medical, is ingrained in kindergarten, along with standing-in-line.*
But I always think of that line from The Wizard of Oz: "But they have one thing you haven't got: a diploma."
*Such a truly American thing, our patient and orderly line-forming. Or possibly, legacy of British Empire.
Thursday, November 13, 2008
On Healthcare
Last month, I had the singular joy of arguing with Large Evil Healthcare Company, which insures employees of Uncle Frozen & Crazy. Although we had coverage starting October 1, according to their computer we did not exist. Therefore, too bad. At some point before they got their act together, I was going to run out of medication. I had a prescription. I had a group plan number and a letter stating I had coverage. I had a 400-page binder on benefits. Could I get them to bloody well deal with it? No, of course not.
Six phone calls later- including a very irritated call to the spouse- I managed to determine that, probably, if I went to the local Target and paid the sum of $XXX for my prescriptions, I could maybe, probably, fill out a reimbursement form and get back $XXX-$20. Fine. How nice that I have time to harass Evil Healthcare.
The irony is, of course, that I have excellent health care coverage. I don't have to choose between paying $XXX, or the electric bill. We have a yearly cap on expenditures that is well within our means (even with one income). I need not worry that an illness or a baby will bankrupt us, and I can even go to any doctor I want. And an hour of my life was wasted to establish one little factoid about drugs. People spend months- years!- arguing with evil healthcare companies about major illnesses. This is ridiculous.
Once, I was very ill while in Great Britain. A very nice family trundled me over to the NHS urgent care center on a Sunday afternoon. I waited a half-hour, the doctor listened to my chest, and I went off with two prescriptions. (The people at the front desk gave me a very funny look when I asked them if I owed anything. 'No,' they said, '...ummm, no.')
'I'm afraid the prescriptions'll be six pounds each,' the nice family said apologetically, 'since you don't have [some obscure form of NHS coverage.]'
They were very confused when I burst into wheezy, uncontrollable laughter.
Six phone calls later- including a very irritated call to the spouse- I managed to determine that, probably, if I went to the local Target and paid the sum of $XXX for my prescriptions, I could maybe, probably, fill out a reimbursement form and get back $XXX-$20. Fine. How nice that I have time to harass Evil Healthcare.
The irony is, of course, that I have excellent health care coverage. I don't have to choose between paying $XXX, or the electric bill. We have a yearly cap on expenditures that is well within our means (even with one income). I need not worry that an illness or a baby will bankrupt us, and I can even go to any doctor I want. And an hour of my life was wasted to establish one little factoid about drugs. People spend months- years!- arguing with evil healthcare companies about major illnesses. This is ridiculous.
Once, I was very ill while in Great Britain. A very nice family trundled me over to the NHS urgent care center on a Sunday afternoon. I waited a half-hour, the doctor listened to my chest, and I went off with two prescriptions. (The people at the front desk gave me a very funny look when I asked them if I owed anything. 'No,' they said, '...ummm, no.')
'I'm afraid the prescriptions'll be six pounds each,' the nice family said apologetically, 'since you don't have [some obscure form of NHS coverage.]'
They were very confused when I burst into wheezy, uncontrollable laughter.
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