Not long ago, someone asked me where I've been for the past few years. They read something I'd written, and they liked what they heard/saw. They seemed surprised that I haven't been more of a presence in the healthcare discussion.
The first answer that came to mind was, "I've been dealing with health issues in my family," which is all too true. Like so many Americans, I've had some pretty pressing health stuff going on in my immediate and extended family. It's demanded a lot of focus to sort it all out, but sort it out we did. As a lot of people know, taking care of health and navigating the medical system can take a lot out of you. It demands rigorous attention to detail, at times, and we don't often have much left over for other activities... like blogging.
Yeah, I've been busy. With the kinds of stuff nobody wants to have to be busy with, but so many of us are.
Then I thought about it some more, over the past few days, and it occurred to me that the second part of the answer is, "I've been thinking." One of the big pieces of the coping process for me has been pondering what's gone down, examining it, analyzing it, figuring out what it all means to me. I'm not perfect, by any stretch -- as an earlier post about my relationship with my doctor clearly shows. I have a lot to learn, and I have a lot of progress to make, in terms of establishing and cultivating the kind of relationships I want to have with the doctors and specialists in my life.
For me, the lion's share of making progress with health concerns is understanding the nature of the problems at the root of my (and others') discomfort and distress. Until I understand them and can extract some sort of meaning from them, I'm adrift in a sea of details... and non-actionable data.
I can't make much progress towards understanding what I need to, if I don't take time to closely consider what's taken place in my life... and I really like to make progress. So, I stop and think, examine and wonder, and if I'm lucky, I come away with something meaningful and useful and -- most importantly -- actionable.
But when you're in the midst of crisis, it's easy to get stuck inside your head. Being introverted by nature, I tend to first look within for the answers to my questions. Which is fine, until the wheels start to spin so wildly that they drown out everything else around me.
But sometimes, inner awareness is not enough. Sometimes you've gotta listen for more.
Which is what I'm doing now. I'm visiting extended family out of state, and lo and behold, I'm in the midst of a bunch of doctors and healthcare professionals. I'm also smack-dab in the middle of a part of mainstream America that is far from Massachusetts, in many ways. It's not Better, it's not Worse... it's Different. And it's a great opportunity for me to stop and listen to what folks here are saying about their health and healthcare, from a point of view that's shaped by circumstances very different from my own.
I've been going at a pretty brisk clip at work, for the past couple of months. And my head has just been spinning with all the thoughts I've got about how we care for ourselves and keep ourselves alive. Now is truly a wonderful opportunity to take a break, slow down, and listen to what people are saying about their health and how they care for it.
I have the opportunity to spend a few days with a new doctor, who is absolutely livid about the healtcare reform activity in Washington. I have the chance to find out what makes him so angry and so concerned, and what he thinks should happen instead. I have the opportunity to sit down and share a cup of coffee with a medical school registrar who's contemplating the prospect of retiring in the next 10 years or so, and having to shell out $1,000/month for health insurance for the rest of her born days. I have the opportunity to witness how people in this part of the world live, eat, sleep, and generally take care of themselves, and absorb that information into my world view.
It's a great opportunity to get out of my own head, and I don't intend to pass it up. This is a chance to widen my view, round out my considerations a little more, and gain a greater understanding about what it means to be alive, today -- and want to stay that way.
What a great present this is.
24 December 2009
22 December 2009
Opportunity awaits...
A number of years ago, I spent the morning of the day before Thanksgiving in the Emergency Department. My partner and I had been out with friends the evening before, and she'd gotten scratched by a rusty piece of metal. I cleaned out the wound as best I could when we got home, but I could still see some little pieces of rust that I couldn't get to, and we both thought it best if we had a doctor take a look at the nasty cut -- she also needed to get her tetanus shot updated.
Our ED experience was -- as is often the case -- less than stellar. There wasn't much staff around, that day, and since Laney's injury wasn't life threatening, we sat helpless and idle for more than 2 hours, calculating what time we would arrive at her family's place. Under better conditions, we would have been making a serious dent in the 12-hour drive to southwestern Virginia. As it was, we were stuck.
Eventually, Laney did get to see a doctor, and he complimented me on how well I'd cleaned it out. But it was good that we went -- she had the wound cleaned with antiseptic and a professional eye, she got her tetanus booster, we regrouped, and headed down the road to Virginia.
In the years since, we've had a few other emergency room visits. One recent visit comes to mind -- while winterizing my home, I slammed my hand really hard on a window sash, and it swelled up quickly. I could move my fingers pretty well, and I didn't have too much pain, but the swelling alarmed me. Even when I put ice on it, it didn't look good. And it started to ache and pain me. Now, I work at a keyboard for a living, and I can't afford to lose the use of my hand -- or neglect an injury that might cause me problems later. So, after some deliberation, we reluctantly went to the ED.
The wait there was something in the range of four hours. It took place on a Sunday afternoon, and I wasn't overly pressed to do other things, but still, the loss of four hours on one of my precious days off was troubling. That, and being sequestered in a room with people who were sick-and-coughing. When I found out that I hadn't injured myself seriously, and it was basically a contusion that didn't require an x-ray, I questioned the wisdom of going in the first place. But the chance that I'd done real damage to my hand -- which is my bread-and-butter -- wasn't something I was about to mess around with.
I must admit, I'm not a fan of visiting the Emergency Department. I lost someone very dear to me, nearly ten years ago, when they went to the ED complaining of stomach pains, and they weren't seen until their intestine had ruptured and they were irreversibly, mortally ill. Going from the ED to the OR and never regaining consciousness... it's awful, and that tragic (and possibly preventable) loss will stay with me all my born days. I often wonder what might have happened, had the ED staff taken the situation a little more seriously.
I also work with a guy whose wife fell and was bleeding from a scalp wound. She was fortunate to be near a hospital when she fell, and when he got the call about her accident, he hustled out of work to go meet her at the ER. When he got there, he found her sitting with a clipboard and a form, and a handful of blood-soaked paper towels held to her forehead. He composed himself and approached the folks at the main desk and asked if they had any bandages, since his wife was bleeding all over their waiting room. The attendant opened a drawer beside him and pulled out a big gauze bandage -- which had been right beside the stack of intake forms. Hmmmm... priorities....
Then again, I have had other ED visits where the person I took in was whisked away with all due haste and given immediate, thorough care. I was also allowed to go back into the treatment area with them, which was very helpful for them. Those were positive aspects of generally negative experiences, and I'm very grateful for them. On the downside, we were both left waiting with the beeping machines and the it-takes-time-to-kick-in medications... waiting... waiting... waiting... till the doctor came to check in. Our interactions with the ED doctors will be the subject of another post -- this post is about the wait.
Now, sad stories about ED staff responsiveness are something we probably cannot fix anytime soon. People are people, and you can't legislate personal priorities. Things happen, and tragedies take place every day, due to complex, interconnected issues which are not easily addressed.
There is one area, however, where I think we could make progress - the use of time spent waiting in Emergency Departments.
Now, I'm big into time management -- I have a ton of things I need to get done, every day, and I generally get most of them done. If I don't, I know there's something wrong. And when I lose four hours to just sitting idly, when I could be getting something meaningful accomplished, well, I feel that loss. Surely, there's a better way.
According to the CDC's web page on Emergency Department Visits, here's the skinny on our national relationship with the ED:
(Data are for the U.S.)
* Number of ED visits: 119.2 million
* Number of ED injury-related visits: 42.4 million
* Number of ED visits per 100 persons: 40.5
* Most commonly diagnosed condition: injury and poisoning
* Percent of visits with patient seen in fewer than 15 minutes: 22%
* Median time spent in emergency department: 2.6 hours
* Percent of ED visits resulting in hospital admission: 13%
* Percent of ED visits resulting in transfer to a different hospital: 1.9%
Source: National Hospital Ambulatory Medical Care Survey: 2006 Emergency Department Summary, tables 1, 10, 12, 21, 25
Now, I know median numbers can be misleading, and the time spent will necessarily vary from person to person, but if 119.2 million Americans are spending an average of 2.6 hours in the emergency room, well, that's a heck of a lot of time we're spending waiting for assistance.
Even if we're seen right away, we can also spend a fair amount of time waiting for our care to be completed. Now, I know things take time in the ED. I'm not disputing that. But the hours we spend could be better used -- for our treatment and our health.
Enter the ED Care Champions
Imagine, if you will, that a hospital has people on staff who come to assist patients who have come to the emergency room. These "patient assistants" have some medical (possibly nursing) training, and they have been trained to interview people who have come to the ED to find out exactly what happened, find out about existing medical conditions, flag potential issues, like allergies or sensitivities, and then translate that all into a summary for the attending physician (who's not going to have the time to establish personal rapport to read body language and understand the whole person, anyway). They're versed in the effects of trauma on cognition (remember, injury-related ED visits = 42.4 million, and that's a lot of trauma), so they can deftly coax the pertinent information out of the visitors, and create a patient profile that actually makes sense to the attending physician.
What's more, they are educated in how to explain medical conditions and terminology to average people like you and me. So, after the patients are seen, if they have questions about what needs to happen, they can check with the patient assistant. They can walk through the info the doctor gave them, or discuss their next steps, and get clear on what they're supposed to do -- and why.
Imagine, if you will, that these patient assistants have printed information available from a trusted source (possibly the hospital itself) about a wide variety of conditions (it wouldn't need to be already printed, like a pamphlet -- they could pull it off a website they access with their laptop, and then print copies of the info on the printer that's sitting near the intake desk). Further, they have lists of related, reputable, trustworthy online resources they can give to the patient, so they can educate themselves and manage better over the long term.
In the process, these ED Care Champions can help patients more fully understand their situation, and better conceptualize the next steps of their care. And they've both hastened the treatment process by giving the doctor the exact information he/she needs to act quickly and accurately, while reinforcing the dignity of the incoming patient. What's more, these ED Care Champions could pick up the slack left by overloaded reception folks who miss important things (like getting gauze bandages to patients who are bleeding profusely) and fill the gaps that invariably arise when busy people are given more info than they can process.
Maybe I'm crazy, but it seems like a good use of time. But who would pay for it? Why not insurance companies? Why not hospitals? Actually, the insurance companies might make more sense -- not because it adds to their costs, but because it could cut down on claims (and their long-term expenses) by assisting with treatment and care, from the get-go -- prevention and immediate action as a sound way to avoid later complications. Getting people on the right foot, with regard to their care -- not to mention giving the doctors additional tools and information to help them diagnose and treat -- seems like a long-term cost-saver to me.
But, you argue, the insurance companies will never buy it? I disagree. Some insurance companies have "care champions" who call insured individuals (after they've been diagnosed with a chronic condition) with regular check-ins to see how they're doing. These care champions act as coaches and resources for chronic conditions, and they make providing info and counseling an integral part of extended health care. The care champion model seems like a good thing to integrate into Emergency Department care -- especially when people are just sitting there, marinating in their discomfort and difficulty, wondering when someone is going to see them, getting antsier and antsier, and possibly increasingly combative. I don't have the stats on it, but it's my understanding that just talking to someone can reduce agitation and physical pain... which contributes to communication... which facilitates good and speedy care.
There's always the possibility that I'm oversimplifying things, or I'm not fully understanding all the issues at stake. But why not consider the idea? It would definitely create jobs -- and these would be meaningful jobs that connect people with other people, helping them in real and substantive ways. Sure beats standing in front of a styrofoam cup machine for 8 hours (which I have done, so I am qualified to speak to that). These would be jobs that fill a truly pressing need, and that give people a sense of purpose and belonging to something greater than themselves. These are the kinds of jobs we need, and this is a need that's waiting to be filled.
Personally, I think that implementing something like this wouldn't have to be overly complicated or difficult. I'm not saying it's a piece of cake -- there needs to be prioritization and organization around it, and people would have to think carefully about how to do it best. The ED Care Champions would need to be educated in a range of areas -- medical, psychological, technical... and more. And it might be really personally taxing work, so the EDCC's wouldn't be on shifts longer than 4 hours in the ED -- with remaining hours spent on reviewing cases and administrative housekeeping. But there's already a seed of that paradigm in the existing insurance company care champion model -- why not extend it to ED Care Champions, too?
Seems like a good use for those 100+ million unused hours.
Our ED experience was -- as is often the case -- less than stellar. There wasn't much staff around, that day, and since Laney's injury wasn't life threatening, we sat helpless and idle for more than 2 hours, calculating what time we would arrive at her family's place. Under better conditions, we would have been making a serious dent in the 12-hour drive to southwestern Virginia. As it was, we were stuck.
Eventually, Laney did get to see a doctor, and he complimented me on how well I'd cleaned it out. But it was good that we went -- she had the wound cleaned with antiseptic and a professional eye, she got her tetanus booster, we regrouped, and headed down the road to Virginia.
In the years since, we've had a few other emergency room visits. One recent visit comes to mind -- while winterizing my home, I slammed my hand really hard on a window sash, and it swelled up quickly. I could move my fingers pretty well, and I didn't have too much pain, but the swelling alarmed me. Even when I put ice on it, it didn't look good. And it started to ache and pain me. Now, I work at a keyboard for a living, and I can't afford to lose the use of my hand -- or neglect an injury that might cause me problems later. So, after some deliberation, we reluctantly went to the ED.
The wait there was something in the range of four hours. It took place on a Sunday afternoon, and I wasn't overly pressed to do other things, but still, the loss of four hours on one of my precious days off was troubling. That, and being sequestered in a room with people who were sick-and-coughing. When I found out that I hadn't injured myself seriously, and it was basically a contusion that didn't require an x-ray, I questioned the wisdom of going in the first place. But the chance that I'd done real damage to my hand -- which is my bread-and-butter -- wasn't something I was about to mess around with.
I must admit, I'm not a fan of visiting the Emergency Department. I lost someone very dear to me, nearly ten years ago, when they went to the ED complaining of stomach pains, and they weren't seen until their intestine had ruptured and they were irreversibly, mortally ill. Going from the ED to the OR and never regaining consciousness... it's awful, and that tragic (and possibly preventable) loss will stay with me all my born days. I often wonder what might have happened, had the ED staff taken the situation a little more seriously.
I also work with a guy whose wife fell and was bleeding from a scalp wound. She was fortunate to be near a hospital when she fell, and when he got the call about her accident, he hustled out of work to go meet her at the ER. When he got there, he found her sitting with a clipboard and a form, and a handful of blood-soaked paper towels held to her forehead. He composed himself and approached the folks at the main desk and asked if they had any bandages, since his wife was bleeding all over their waiting room. The attendant opened a drawer beside him and pulled out a big gauze bandage -- which had been right beside the stack of intake forms. Hmmmm... priorities....
Then again, I have had other ED visits where the person I took in was whisked away with all due haste and given immediate, thorough care. I was also allowed to go back into the treatment area with them, which was very helpful for them. Those were positive aspects of generally negative experiences, and I'm very grateful for them. On the downside, we were both left waiting with the beeping machines and the it-takes-time-to-kick-in medications... waiting... waiting... waiting... till the doctor came to check in. Our interactions with the ED doctors will be the subject of another post -- this post is about the wait.
Now, sad stories about ED staff responsiveness are something we probably cannot fix anytime soon. People are people, and you can't legislate personal priorities. Things happen, and tragedies take place every day, due to complex, interconnected issues which are not easily addressed.
There is one area, however, where I think we could make progress - the use of time spent waiting in Emergency Departments.
Now, I'm big into time management -- I have a ton of things I need to get done, every day, and I generally get most of them done. If I don't, I know there's something wrong. And when I lose four hours to just sitting idly, when I could be getting something meaningful accomplished, well, I feel that loss. Surely, there's a better way.
According to the CDC's web page on Emergency Department Visits, here's the skinny on our national relationship with the ED:
(Data are for the U.S.)
* Number of ED visits: 119.2 million
* Number of ED injury-related visits: 42.4 million
* Number of ED visits per 100 persons: 40.5
* Most commonly diagnosed condition: injury and poisoning
* Percent of visits with patient seen in fewer than 15 minutes: 22%
* Median time spent in emergency department: 2.6 hours
* Percent of ED visits resulting in hospital admission: 13%
* Percent of ED visits resulting in transfer to a different hospital: 1.9%
Source: National Hospital Ambulatory Medical Care Survey: 2006 Emergency Department Summary, tables 1, 10, 12, 21, 25
Now, I know median numbers can be misleading, and the time spent will necessarily vary from person to person, but if 119.2 million Americans are spending an average of 2.6 hours in the emergency room, well, that's a heck of a lot of time we're spending waiting for assistance.
Even if we're seen right away, we can also spend a fair amount of time waiting for our care to be completed. Now, I know things take time in the ED. I'm not disputing that. But the hours we spend could be better used -- for our treatment and our health.
Enter the ED Care Champions
Imagine, if you will, that a hospital has people on staff who come to assist patients who have come to the emergency room. These "patient assistants" have some medical (possibly nursing) training, and they have been trained to interview people who have come to the ED to find out exactly what happened, find out about existing medical conditions, flag potential issues, like allergies or sensitivities, and then translate that all into a summary for the attending physician (who's not going to have the time to establish personal rapport to read body language and understand the whole person, anyway). They're versed in the effects of trauma on cognition (remember, injury-related ED visits = 42.4 million, and that's a lot of trauma), so they can deftly coax the pertinent information out of the visitors, and create a patient profile that actually makes sense to the attending physician.
What's more, they are educated in how to explain medical conditions and terminology to average people like you and me. So, after the patients are seen, if they have questions about what needs to happen, they can check with the patient assistant. They can walk through the info the doctor gave them, or discuss their next steps, and get clear on what they're supposed to do -- and why.
Imagine, if you will, that these patient assistants have printed information available from a trusted source (possibly the hospital itself) about a wide variety of conditions (it wouldn't need to be already printed, like a pamphlet -- they could pull it off a website they access with their laptop, and then print copies of the info on the printer that's sitting near the intake desk). Further, they have lists of related, reputable, trustworthy online resources they can give to the patient, so they can educate themselves and manage better over the long term.
In the process, these ED Care Champions can help patients more fully understand their situation, and better conceptualize the next steps of their care. And they've both hastened the treatment process by giving the doctor the exact information he/she needs to act quickly and accurately, while reinforcing the dignity of the incoming patient. What's more, these ED Care Champions could pick up the slack left by overloaded reception folks who miss important things (like getting gauze bandages to patients who are bleeding profusely) and fill the gaps that invariably arise when busy people are given more info than they can process.
Maybe I'm crazy, but it seems like a good use of time. But who would pay for it? Why not insurance companies? Why not hospitals? Actually, the insurance companies might make more sense -- not because it adds to their costs, but because it could cut down on claims (and their long-term expenses) by assisting with treatment and care, from the get-go -- prevention and immediate action as a sound way to avoid later complications. Getting people on the right foot, with regard to their care -- not to mention giving the doctors additional tools and information to help them diagnose and treat -- seems like a long-term cost-saver to me.
But, you argue, the insurance companies will never buy it? I disagree. Some insurance companies have "care champions" who call insured individuals (after they've been diagnosed with a chronic condition) with regular check-ins to see how they're doing. These care champions act as coaches and resources for chronic conditions, and they make providing info and counseling an integral part of extended health care. The care champion model seems like a good thing to integrate into Emergency Department care -- especially when people are just sitting there, marinating in their discomfort and difficulty, wondering when someone is going to see them, getting antsier and antsier, and possibly increasingly combative. I don't have the stats on it, but it's my understanding that just talking to someone can reduce agitation and physical pain... which contributes to communication... which facilitates good and speedy care.
There's always the possibility that I'm oversimplifying things, or I'm not fully understanding all the issues at stake. But why not consider the idea? It would definitely create jobs -- and these would be meaningful jobs that connect people with other people, helping them in real and substantive ways. Sure beats standing in front of a styrofoam cup machine for 8 hours (which I have done, so I am qualified to speak to that). These would be jobs that fill a truly pressing need, and that give people a sense of purpose and belonging to something greater than themselves. These are the kinds of jobs we need, and this is a need that's waiting to be filled.
Personally, I think that implementing something like this wouldn't have to be overly complicated or difficult. I'm not saying it's a piece of cake -- there needs to be prioritization and organization around it, and people would have to think carefully about how to do it best. The ED Care Champions would need to be educated in a range of areas -- medical, psychological, technical... and more. And it might be really personally taxing work, so the EDCC's wouldn't be on shifts longer than 4 hours in the ED -- with remaining hours spent on reviewing cases and administrative housekeeping. But there's already a seed of that paradigm in the existing insurance company care champion model -- why not extend it to ED Care Champions, too?
Seems like a good use for those 100+ million unused hours.
Feedburner Feed now Available
ePatientDave suggested I get on the Feedburner train, and so I have -- here's the feed url: http://feeds.feedburner.com/KayStoner-TheArtOfLivingWell
Cheers
Kay
Cheers
Kay
20 December 2009
I would just LOVE to be more engaged with my PCP
And I think she would like it, as well. But every time I show up for what is even a routine visit, she tells me she's going to "get in trouble" for spending too much time with me. She's supposed to sail through the appointment, taking no more than 15-20 minutes to find out what my issues are and what I should do about them (with or without medication), and that's supposed to suffice.
Except that it doesn't. Because 1) I need more time to explain things to her (I have a lot in my head, you see, and I don't shy away from complexity, and 2) she needs the time to really find out what's going on with me, aside from the rash or the spreading poison ivy or the upper respiratory infection, and 3) I need more time to clarify with her the things she's telling me, 'cause unlike some folks, I have a real and pressing need to be involved in my own healthcare, my own life. I need to be WELL, on all levels, not just not-sick (or asymptomatic).
I have tried different approaches -- like making notes about my situation that I can share with her. This is an important thing for me to do, because I have a nasty habit of forgetting important details in the moment.
It's so predictable, you'd think I could stop the cycle. Before I get to the office, I am usually pretty clear about what's up with me. But then I get in there, I get talking to the staff (who are all very nice and also get in trouble for not moving fast enough, because they take too long with me - but we're actually having a human exchange, and it's not taking forEVER, so I don't see why that's so awful)... and I get caught up in scanning through the pharma-company-supplied pamphlets and fact sheets that are scattered about... and then the doctor comes in after a few minutes and asks me how things are in general, and by the time we get down to talking about what's going on with me, I am hopelessly distracted, and all I can do is shrug, sometimes. It's sad, I know. Very sad.
So, I've tried writing down notes and bringing them in. But my doctor tells me to put them away and just talk to her. As though that will be easier for me. It's probably easier for her... tho', come to think of it, I'm not sure why she prefers partial information to a complete picture? She also appears to get a kick out of me showing up with information I found online. It's not like I'm trolling around about.com (my apologies to the guides who work hard to put useful info up there) and relying on amateur infopreneur articles for my sources. I tend to seek out reputable sources, and I take the time to consider what I'm reading. But my doctor just rolls her eyes and says "internet" like it's a joke.
My health is not a joke. My survival is not a joke. My life is not a joke. If I can't get the right information from her -- because she doesn't have time to spend with me -- I'm going to seek it out elsewhere.
Now, I don't mean to beat up on my PCP. Overall, she gets high marks, and she's the best doctor I've ever had. I have awful stories about past experiences, including a multi-year spate of extended (inconclusive) tests in the early 1990s -- I think I'm still trying to build back my blood supply ;) -- and a string of doctors who dismissed me outright or made fun of me or refused to honor my genuine inquisitiveness.
Maybe I've just been walking around with a sign on my back that says, "Dear Doctor, please ridicule me -- and bill my insurance company for the hour you spend laughing at me."
Well, anyway, it's Sunday night after a long day of shoveling 5 inches of fluffy snowfall off my deck and stairs... snowblowing the driveway, and raking my roof, so I'm a little punchy. But really, I would love to be more involved with my PCP. I'd love to be able to email her with questions, or just raise a question without her looking over her glasses at me with amusement that I'm daring enough to guess that the spreading rash over my legs and arms looks like the pictures of poison ivy I've seen online, and my symptoms match that condition. I would love to be treated with dignity and respect, not grudging accommodation, and given the time I need to fully understand what she's saying to me about how to keep healthy... and discuss the ramifications of her prescription with her. (Let the record show that I will NOT be talked into taking prednisone again -- the 'roid rage is just not worth it to me -- I'd rather itch.) I would love to have her get to know me and my quirks and foibles, so she can understand what I'm saying and what it means, without taking it out of context.
All these wishes... I'm not sure if it's going to happen anytime soon, or if it will happen at all. Maybe they're as fanciful as a letter to Santa. But they feel pretty real and pretty important to me. I'll just keep trying. The one New Year's resolution I know I can keep is just that -- keep trying.
Except that it doesn't. Because 1) I need more time to explain things to her (I have a lot in my head, you see, and I don't shy away from complexity, and 2) she needs the time to really find out what's going on with me, aside from the rash or the spreading poison ivy or the upper respiratory infection, and 3) I need more time to clarify with her the things she's telling me, 'cause unlike some folks, I have a real and pressing need to be involved in my own healthcare, my own life. I need to be WELL, on all levels, not just not-sick (or asymptomatic).
I have tried different approaches -- like making notes about my situation that I can share with her. This is an important thing for me to do, because I have a nasty habit of forgetting important details in the moment.
It's so predictable, you'd think I could stop the cycle. Before I get to the office, I am usually pretty clear about what's up with me. But then I get in there, I get talking to the staff (who are all very nice and also get in trouble for not moving fast enough, because they take too long with me - but we're actually having a human exchange, and it's not taking forEVER, so I don't see why that's so awful)... and I get caught up in scanning through the pharma-company-supplied pamphlets and fact sheets that are scattered about... and then the doctor comes in after a few minutes and asks me how things are in general, and by the time we get down to talking about what's going on with me, I am hopelessly distracted, and all I can do is shrug, sometimes. It's sad, I know. Very sad.
So, I've tried writing down notes and bringing them in. But my doctor tells me to put them away and just talk to her. As though that will be easier for me. It's probably easier for her... tho', come to think of it, I'm not sure why she prefers partial information to a complete picture? She also appears to get a kick out of me showing up with information I found online. It's not like I'm trolling around about.com (my apologies to the guides who work hard to put useful info up there) and relying on amateur infopreneur articles for my sources. I tend to seek out reputable sources, and I take the time to consider what I'm reading. But my doctor just rolls her eyes and says "internet" like it's a joke.
My health is not a joke. My survival is not a joke. My life is not a joke. If I can't get the right information from her -- because she doesn't have time to spend with me -- I'm going to seek it out elsewhere.
Now, I don't mean to beat up on my PCP. Overall, she gets high marks, and she's the best doctor I've ever had. I have awful stories about past experiences, including a multi-year spate of extended (inconclusive) tests in the early 1990s -- I think I'm still trying to build back my blood supply ;) -- and a string of doctors who dismissed me outright or made fun of me or refused to honor my genuine inquisitiveness.
Maybe I've just been walking around with a sign on my back that says, "Dear Doctor, please ridicule me -- and bill my insurance company for the hour you spend laughing at me."
Well, anyway, it's Sunday night after a long day of shoveling 5 inches of fluffy snowfall off my deck and stairs... snowblowing the driveway, and raking my roof, so I'm a little punchy. But really, I would love to be more involved with my PCP. I'd love to be able to email her with questions, or just raise a question without her looking over her glasses at me with amusement that I'm daring enough to guess that the spreading rash over my legs and arms looks like the pictures of poison ivy I've seen online, and my symptoms match that condition. I would love to be treated with dignity and respect, not grudging accommodation, and given the time I need to fully understand what she's saying to me about how to keep healthy... and discuss the ramifications of her prescription with her. (Let the record show that I will NOT be talked into taking prednisone again -- the 'roid rage is just not worth it to me -- I'd rather itch.) I would love to have her get to know me and my quirks and foibles, so she can understand what I'm saying and what it means, without taking it out of context.
All these wishes... I'm not sure if it's going to happen anytime soon, or if it will happen at all. Maybe they're as fanciful as a letter to Santa. But they feel pretty real and pretty important to me. I'll just keep trying. The one New Year's resolution I know I can keep is just that -- keep trying.
Okay, now you can comment
I'd been in a non-communicative frame of mind for a while, so I had turned off comments on my posts. All the monitoring got to be too much.
Now that's changed. Please comment at will.
Thanks
Kay
Now that's changed. Please comment at will.
Thanks
Kay
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