Poets Versus Illness, Being Your Own Superheroine
This is not specifically about PAI-1 deficiency, but about managing illnesses or medical conditions in general.
Recently I read Rae Armantrout’s series of essays about her discovery of, and recovery from, a rare cancer (events she wrote about obliquely in Versed). She’s wonderfully caustic about the doctors, the systems, and the management of illness in general. But she’s right about one thing: to save our own lives, we can’t expect the oncologist to speak our language; we have to learn to think like oncologists.
I’m reading another book, Your Medical Mind, that has also got me to thinking about what makes the difference between successful treatment and unsuccessful (ie the kind where you end up dead.) It occurs to me as I’ve navigated for many years through many medical quagmires that to stay alive, you need to be persistant, clear, brave, curious, aggressively self-protective…in short, not only do you have to be your own advocate, you have to be your own superheroine.
In the next few paragraphs I’m going to be more personal, more autobiographical, and probably more physically graphic than I usually allow myself to be on the blog. I am telling you these things in the hopes that maybe my stories will help someone out there not go through the same things I have, to be able to get help more quickly. I am not a doctor though I play one on TV, so treat all advice I’m giving accordingly. So, DISCLAIMER: I AM NOT A MEDICAL PROFESSIONAL AND CANNOT GIVE YOU MEDICAL ADVICE. But here’s what I’ve learned over a couple of decade of mysterious illnesses, injuries, and etc.
Several times I’ve had catastrophic things go wrong in medical settings. I almost died when several “things that almost never happen” all happened during an unnecessary surgery after I was misdiagnosed with endometriosis (yeah, I didn’t have it after all. Bleeding disorder instead. Whoops!); I’ve woken up from anesthesia in the middle of surgery more than once (Whoops!), had life-threatening allergic reactions to medicines as simple as codeine, and of course, with the rare bleeding disorder (that wasn’t properly diagnosed until I was thirty) several fairly dangerous bleeding incidents from routine things like wisdom teeth removal. Nurses have tried to put medicines I have explicitly told them I am allergic to (and had listed in my chart as allergies) in my IV lines while I’ve been sedated. Multiple times. Thank God someone was there to question them. When I’ve been awake, nurses have tried to talk me out of my allergies: “This will make you feel better. No one is allergic to blank. Etc.” There have been near-misses: doctors who recommended unnecessary and dangerous procedures that I was right to be wary of, doctors who prescribed medications that interacted dangerously with meds I was already taking, doctors who just plain gave bad advice that I’m happy I ignored.
Several times I’ve been saved from almost dying, too, by modern medicine: a trip to the ER and mercifully quick-as-a-snap treatment saved my life during one of those rare but nearly fatal asthma attacks I sometimes get; another saved my life from anaphylaxis as a reaction to wheat (a new allergy that arrived in midlife, unwelcome.) An IV drip of antibiotics and being on oxygen helped tip the scales in my favor when I had a serious case of double pneumonia a couple of years ago in California (the year everyone was dying of swine flu.) As a child, I nearly died from scarlet fever. I am thankful not only for these instances, but for the polio and tetanus vaccines I received, the routine exams that rule out problems, all the “boring” parts of medicine that make things like dying of the plague or measles or flu less common these days. I am particularly grateful to every small town primary care doc that took the time to track down weird symptoms, odd problems, and outside-the-range-of-normal results.
But here are my tips for successfully being your own superheroine (or superhero) when it comes to your health:
--Educate yourself. If you have a condition, such as asthma, diabetes, or say, even a rare genetic disorder, you need to find out everything you can about it. What does current research say are the best tests, the best treatments? What can you be doing to mitigate problems with your condition? Rae mentioned talking to a professor friend who ended up sending her to a researcher who may have saved her life with experimental chemo when her regular doc told her there was no treatment for her cancer. Stuff like that saves people’s lives every day.
--Don’t be a powerless victim when it comes to your medical care. Your doctors are part of your team. Create a dream team for your health. Your doctors are not your boss, your God, or your family. Your insurer definitely isn’t either. If you have a doctor who is not taking your stuff seriously, or who blows off an odd test result, or simply you don’t feel comfortable with, find another doctor. Don’t just settle for whoever’s down the street and on your insurance. If you live in a small town, go ahead and drive the extra hour to get to a research hospital with great specialists. Also, this might be a no-brainer, but if a doc almost kills me, for instance, I usually find another doctor. Someone I know called his doctor when he was having chest pain after a game of tennis, and his regular doctor told him to take an aspirin and come in for a checkup in a few days. My father happened to be present and insisted this person go to the ER right away, where it turned out – yup, you guessed it – this person was having a big ole heart attack. Don’t be the person that goes back to that doctor.
When three different hematologists were stumped while looking for the reason for my odd bleeding problems, my mother and I teamed up to look up specialists on the internet for me here in Seattle – the one we decided on was booked out for six months, by the way (the good ones almost always are) – and that ended up being the doctor who finally diagnosed me and is still my hematologist today.
Often, the best docs are at the big research hospitals, cancer centers, but read up on the latest “best of” lists, the latest research. Being board-certified is usually a good thing, for instance. Pay attention to what each doctor really specializes in. Don’t go to a rheumatologist if you really need an immunologist (sometimes, docs can be both, but not always.) The best fertility Ob/Gyn in town may not be the best person for your particular high-risk pregnancy case. Etc. I’ve found that even the “best” doc – if they’re not trained in the particular area you’re having trouble with – might not be the best doc for you. Also, if you have a doctor you trust, ask that doctor about the specialist (or whoever’s) reputation. Chances are, doctors will gossip. If I hear so-and-so is a jerk but a great surgeon, that’s fine, for instance, but it’s not what I’m looking for in a primary care doctor. In “Your Medical Mind,” the authors talk about how each doctor’s personality type can impact the type of care you receive, the medicine you’re given, the level of honesty you get from him or her, and how to manage each kind of personality type successfully. Do you really want to know why he’s handing you that prescription? And the answer could be: the pharm rep just took him out to lunch, and she was really good looking. Be aware that doctors are all human. Fallible.
--Be your own advocate. Ask questions. If you don’t understand what a test requires, or what a result means, or what a specific diagnosis means for you, make sure you talk to the doctor until you do understand. Also, in the same way you can fire doctors, you can demand adequate service from techs; if an ultrasound tech is too rough, or a phlebotomist screws up your IV a third time, ask for someone in charge and see if another tech is available. I refuse to work with bad phlebotomists. I already bruise like a banshee; I don’t need some idiot making a minor problem much worse.
--You don’t need every test, you don’t need an antibiotic every time you get sick, and you may not need that surgery. Think about this: every treatment might have consequences; for instance, tests might have risks: radioactivity exposure during a CT, chance of nicks to internal organs during a scoping, allergic reactions or just plain nasty side effects for medications. You don’t want or need unnecessary tests or unnecessary pills; more is not always better. So if the doc hands you a prescription, ask why exactly you need to take it, what you can expect on the medication in terms of side effects or interactions, etc. And ask again at the pharmacist (sometimes the pharmacists know more about side effects than the doctors!) Get a second opinion if someone diagnoses you without a thorough workup. Get a third opinion if it’s something really important.
--You’re going to have limited time with your doctor, especially if they’re a specialist, so make it count. If you have a couple of concerns, write them down on a pad of paper beforehand so you don’t accidentally forget one of them. Jot notes when docs give you answers. If you’re like me and a big forgetful under stress, bring your spouse or a friend or family member with you. They might remember a bit of crucial info that might be helpful to your doctor during the appointment, or later, when you’re getting treatment. I’ve actually brought in voice recorders that I used to use in my journalism work for important doctor appointments (ask permission before you record, of course.)
--If you must go into the hospital, try to have someone with you at all times. You know those horror stories about people being left in MRI machines all night? They do happen (I actually got left in a locked testing room once after surgery, though I was on an IV and unable to move…) The more people you have keeping track of your whereabouts, your allergies, problems, and your treatments, the better.
--Do not let your illness (condition, etc) define you or decide your life. Protect the parts of you (artistic, creative, shopaholic, whatever) that are separate from the disease and nurture them, even at your sickest. Keep friends around that remind you of the good parts of living. It is natural to feel depressed when you feel sick, and doctor’s offices aren’t exactly full of good cheer (we don’t even get lollipops with our shots anymore!) See a therapist if you can’t see the light, can’t make yourself feel good, and feel you are losing your fight. And do good to your own body when it is vulnerable – rest, offer it good things to eat, take your medicines at the appointed time,..the works.
This is not specifically about PAI-1 deficiency, but about managing illnesses or medical conditions in general.
Recently I read Rae Armantrout’s series of essays about her discovery of, and recovery from, a rare cancer (events she wrote about obliquely in Versed). She’s wonderfully caustic about the doctors, the systems, and the management of illness in general. But she’s right about one thing: to save our own lives, we can’t expect the oncologist to speak our language; we have to learn to think like oncologists.
I’m reading another book, Your Medical Mind, that has also got me to thinking about what makes the difference between successful treatment and unsuccessful (ie the kind where you end up dead.) It occurs to me as I’ve navigated for many years through many medical quagmires that to stay alive, you need to be persistant, clear, brave, curious, aggressively self-protective…in short, not only do you have to be your own advocate, you have to be your own superheroine.
In the next few paragraphs I’m going to be more personal, more autobiographical, and probably more physically graphic than I usually allow myself to be on the blog. I am telling you these things in the hopes that maybe my stories will help someone out there not go through the same things I have, to be able to get help more quickly. I am not a doctor though I play one on TV, so treat all advice I’m giving accordingly. So, DISCLAIMER: I AM NOT A MEDICAL PROFESSIONAL AND CANNOT GIVE YOU MEDICAL ADVICE. But here’s what I’ve learned over a couple of decade of mysterious illnesses, injuries, and etc.
Several times I’ve had catastrophic things go wrong in medical settings. I almost died when several “things that almost never happen” all happened during an unnecessary surgery after I was misdiagnosed with endometriosis (yeah, I didn’t have it after all. Bleeding disorder instead. Whoops!); I’ve woken up from anesthesia in the middle of surgery more than once (Whoops!), had life-threatening allergic reactions to medicines as simple as codeine, and of course, with the rare bleeding disorder (that wasn’t properly diagnosed until I was thirty) several fairly dangerous bleeding incidents from routine things like wisdom teeth removal. Nurses have tried to put medicines I have explicitly told them I am allergic to (and had listed in my chart as allergies) in my IV lines while I’ve been sedated. Multiple times. Thank God someone was there to question them. When I’ve been awake, nurses have tried to talk me out of my allergies: “This will make you feel better. No one is allergic to blank. Etc.” There have been near-misses: doctors who recommended unnecessary and dangerous procedures that I was right to be wary of, doctors who prescribed medications that interacted dangerously with meds I was already taking, doctors who just plain gave bad advice that I’m happy I ignored.
Several times I’ve been saved from almost dying, too, by modern medicine: a trip to the ER and mercifully quick-as-a-snap treatment saved my life during one of those rare but nearly fatal asthma attacks I sometimes get; another saved my life from anaphylaxis as a reaction to wheat (a new allergy that arrived in midlife, unwelcome.) An IV drip of antibiotics and being on oxygen helped tip the scales in my favor when I had a serious case of double pneumonia a couple of years ago in California (the year everyone was dying of swine flu.) As a child, I nearly died from scarlet fever. I am thankful not only for these instances, but for the polio and tetanus vaccines I received, the routine exams that rule out problems, all the “boring” parts of medicine that make things like dying of the plague or measles or flu less common these days. I am particularly grateful to every small town primary care doc that took the time to track down weird symptoms, odd problems, and outside-the-range-of-normal results.
But here are my tips for successfully being your own superheroine (or superhero) when it comes to your health:
--Educate yourself. If you have a condition, such as asthma, diabetes, or say, even a rare genetic disorder, you need to find out everything you can about it. What does current research say are the best tests, the best treatments? What can you be doing to mitigate problems with your condition? Rae mentioned talking to a professor friend who ended up sending her to a researcher who may have saved her life with experimental chemo when her regular doc told her there was no treatment for her cancer. Stuff like that saves people’s lives every day.
--Don’t be a powerless victim when it comes to your medical care. Your doctors are part of your team. Create a dream team for your health. Your doctors are not your boss, your God, or your family. Your insurer definitely isn’t either. If you have a doctor who is not taking your stuff seriously, or who blows off an odd test result, or simply you don’t feel comfortable with, find another doctor. Don’t just settle for whoever’s down the street and on your insurance. If you live in a small town, go ahead and drive the extra hour to get to a research hospital with great specialists. Also, this might be a no-brainer, but if a doc almost kills me, for instance, I usually find another doctor. Someone I know called his doctor when he was having chest pain after a game of tennis, and his regular doctor told him to take an aspirin and come in for a checkup in a few days. My father happened to be present and insisted this person go to the ER right away, where it turned out – yup, you guessed it – this person was having a big ole heart attack. Don’t be the person that goes back to that doctor.
When three different hematologists were stumped while looking for the reason for my odd bleeding problems, my mother and I teamed up to look up specialists on the internet for me here in Seattle – the one we decided on was booked out for six months, by the way (the good ones almost always are) – and that ended up being the doctor who finally diagnosed me and is still my hematologist today.
Often, the best docs are at the big research hospitals, cancer centers, but read up on the latest “best of” lists, the latest research. Being board-certified is usually a good thing, for instance. Pay attention to what each doctor really specializes in. Don’t go to a rheumatologist if you really need an immunologist (sometimes, docs can be both, but not always.) The best fertility Ob/Gyn in town may not be the best person for your particular high-risk pregnancy case. Etc. I’ve found that even the “best” doc – if they’re not trained in the particular area you’re having trouble with – might not be the best doc for you. Also, if you have a doctor you trust, ask that doctor about the specialist (or whoever’s) reputation. Chances are, doctors will gossip. If I hear so-and-so is a jerk but a great surgeon, that’s fine, for instance, but it’s not what I’m looking for in a primary care doctor. In “Your Medical Mind,” the authors talk about how each doctor’s personality type can impact the type of care you receive, the medicine you’re given, the level of honesty you get from him or her, and how to manage each kind of personality type successfully. Do you really want to know why he’s handing you that prescription? And the answer could be: the pharm rep just took him out to lunch, and she was really good looking. Be aware that doctors are all human. Fallible.
--Be your own advocate. Ask questions. If you don’t understand what a test requires, or what a result means, or what a specific diagnosis means for you, make sure you talk to the doctor until you do understand. Also, in the same way you can fire doctors, you can demand adequate service from techs; if an ultrasound tech is too rough, or a phlebotomist screws up your IV a third time, ask for someone in charge and see if another tech is available. I refuse to work with bad phlebotomists. I already bruise like a banshee; I don’t need some idiot making a minor problem much worse.
--You don’t need every test, you don’t need an antibiotic every time you get sick, and you may not need that surgery. Think about this: every treatment might have consequences; for instance, tests might have risks: radioactivity exposure during a CT, chance of nicks to internal organs during a scoping, allergic reactions or just plain nasty side effects for medications. You don’t want or need unnecessary tests or unnecessary pills; more is not always better. So if the doc hands you a prescription, ask why exactly you need to take it, what you can expect on the medication in terms of side effects or interactions, etc. And ask again at the pharmacist (sometimes the pharmacists know more about side effects than the doctors!) Get a second opinion if someone diagnoses you without a thorough workup. Get a third opinion if it’s something really important.
--You’re going to have limited time with your doctor, especially if they’re a specialist, so make it count. If you have a couple of concerns, write them down on a pad of paper beforehand so you don’t accidentally forget one of them. Jot notes when docs give you answers. If you’re like me and a big forgetful under stress, bring your spouse or a friend or family member with you. They might remember a bit of crucial info that might be helpful to your doctor during the appointment, or later, when you’re getting treatment. I’ve actually brought in voice recorders that I used to use in my journalism work for important doctor appointments (ask permission before you record, of course.)
--If you must go into the hospital, try to have someone with you at all times. You know those horror stories about people being left in MRI machines all night? They do happen (I actually got left in a locked testing room once after surgery, though I was on an IV and unable to move…) The more people you have keeping track of your whereabouts, your allergies, problems, and your treatments, the better.
--Do not let your illness (condition, etc) define you or decide your life. Protect the parts of you (artistic, creative, shopaholic, whatever) that are separate from the disease and nurture them, even at your sickest. Keep friends around that remind you of the good parts of living. It is natural to feel depressed when you feel sick, and doctor’s offices aren’t exactly full of good cheer (we don’t even get lollipops with our shots anymore!) See a therapist if you can’t see the light, can’t make yourself feel good, and feel you are losing your fight. And do good to your own body when it is vulnerable – rest, offer it good things to eat, take your medicines at the appointed time,..the works.
The tetanus vaccine nearly killed me. Since having that anaphylactic reaction, I've developed allergies to eggs, WHEAT, and a whole host of other things. I'm celiac as well, as I'm sure you're autoimmune. Its impossible to be proactive about your own health without questioning the ingredients in the tetanus and polio vaccine, especially since almost every new case of polio is a direct result of the vaccine. I was provaccine once, and then I almost died from that. Read the ingredients and decide how much "health" you can get from that injection. Just FYI - if you get a contaminated shot, you may not sue. They're exempt from legal liability. Also, if you're getting routine shots, you'll have a lot of problems. My dad died shortly after his shingles and pneumonia shot. I miss him. Knowing what I know about my genes, they'd likely kill me too.
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