Gamma Research tie-in? Alert Frost, Villette.

[saoba]

After three months of this kind of nonsense we decided it was worth the  nearly an hour round trip to use the Good Pharmacy and moved my scrips back. And, my hand to God, within one week the Bad Pharmacy called me for a customer service survey and asked why.

OMG, is that not so satisfying? my previous cell phone company did that to me.

them: why did you change your provider? cost?
me: ooo, *very long list of reasons why OldProvider sucks*. also NewProvider charges less for the same services.
them: oh.

When I realized what they were asking I told the phone person 'Look, just go get me a supervisor, because the stuff I am going to pitch a fit over is not stuff you guys on the front lines can change.'  I would classify the phone person's reaction as barely concealed glee.

[nebula]

Refills. Gah. Caution- Rant ahead. 

I know that rant. Well, as slightly different one as I live in the UK and we don't have to deal with insurance companies. But since my dad was diagnosed with mesothelioma (and before the diagnosis actually) he's been on a huge cocktail of drugs including a shed load of morphine. And my mother spends hours each week collecting prescriptions and taking them to the pharmacy because they won't give him more than a couple of weeks worth at a time. He has terminal cancer - taking too many opiates is the least of his worries - and he's 75 and can barely walk across the room at times - he's not going to be off down the local pub selling the stuff. It's infuriating and so frustrating.

[Cole]

They said that to me too when I cancelled my landline. I said if the house was on fire I'd go outside and call 911 from my cell. If the fire is so bad all the cellphone towers are down, I'll just assume the fire department can see it from their building, you know? Also, if the fire is that bad I'm going to be leaving, not hanging around holding an electronic device connected to the wall.

Thank you for a good giggle before I dive into my pile of work for this evening!

[tylik]

I think that we as a culture (or something) tend to be unrealistic about the medical profession. And I think the medical profession has some of the same unrealistic expectations about themselves. People's bodies aren't identical any more than personalities or appearances are identical. Just because, for example, most people respond to this prescribed diet one way does not mean this person is not following it correctly. But doctors seem to want to assume that someone is responding to a treatment differently because the patient is doing something wrong, not because the treatment doesn't work for them.

Yes.

And it's complicated. Doctors are more and more frequently being taught not to present themselves in this fashion - and it can be pretty awesome. I've had some of my best experiences with physicians ever with MDs still in their residencies over the last five years or so. But it's also hard, because some patients, particularly older patients, feel more secure with a doctor who presents themselves as being very much in charge and doesn't expect them to be active collaborators so much in the process.

(And it's possible that my own experiences have been influenced by my becoming both more of an insider in that I work in biomedical research and have more than a little clinical experience. That two of my areas of focus are Neuro and Biochem doesn't hurt either.)

I suspect that often the line between "frustrated with themselves because why isn't this working?" and "frustrated with the patient, what's the matter with them?" is pretty blurry.

...and I could launch into a whole critique of the medical school system, and the ways in which it is not effective in educating people (which everyone's known for years, but only a few schools have really started to address), and the problems with trying to concentrate so much authority around the single, semi-standardized MD... but where would be the fun in that?

(Yeah, this is still one of my "Not going for an MD after the PhD" years. Though I vacillate a lot.)

[nebula]

Yes.

And it's complicated. Doctors are more and more frequently being taught not to present themselves in this fashion - and it can be pretty awesome. I've had some of my best experiences with physicians ever with MDs still in their residencies over the last five years or so. But it's also hard, because some patients, particularly older patients, feel more secure with a doctor who presents themselves as being very much in charge and doesn't expect them to be active collaborators so much in the process.

Yes, definitely in my experience with my parents. They've had more contact with health professionals over the last few months than they had ever had in their whole lives until now. And they expect the doctor to tell them what to do and certainly don't expect to be asked what THEY want.

Which is sometimes very frustrating when I'm not nearby and can't got to appointments with them. I've been trying to get my mother to write down questions she might want to ask and yet every time they come back, I ask them how the appointment was and I get told, "Oh, the doctor was lovely. Really nice." And I ask them about the questions and they say, "Oh, we didn't ask that."

My parents are expecting to be told what is good for them and what they have to do and if the doctor is pleasant, then that's a bonus. Which is very frustrating, but at the same time, I can't make them deal with this in a way that is totally outside their comfort zone.

When I was teaching childbirth education I used to remind people that you don't get into medical school on your interpersonal skills and although doctors aren't usually trying to bamboozle you with jargon, it is how they are taught to communicate with each other and there is no reason why you can't ask questions.

[Jezabella49]

And it's complicated. Doctors are more and more frequently being taught not to present themselves in this fashion - and it can be pretty awesome. I've had some of my best experiences with physicians ever with MDs still in their residencies over the last five years or so. But it's also hard, because some patients, particularly older patients, feel more secure with a doctor who presents themselves as being very much in charge and doesn't expect them to be active collaborators so much in the process.

Yes, definitely in my experience with my parents. They've had more contact with health professionals over the last few months than they had ever had in their whole lives until now. And they expect the doctor to tell them what to do and certainly don't expect to be asked what THEY want.
. . .

When I was teaching childbirth education I used to remind people that you don't get into medical school on your interpersonal skills and although doctors aren't usually trying to bamboozle you with jargon, it is how they are taught to communicate with each other and there is no reason why you can't ask questions.

With my daughter's health issues (DS, PH secondary to an unrepaired complete AVSD, Rastelli type C and subsequent Eisenmenger's syndrome), especially after she became an adult, I tried to explain whatever the current problem was as diagnosed, explain what the doctors were proposing, and ask her what she wanted to do.  I was perfectly willing to offer suggestions, but it's her mind, her body, and I wanted her to have the final say.

We also managed to educate a few doctors along the way.  When a doctor would say "Eisenmenger's?" back to me with a lift of the eyebrows and a questioning intonation, I'd give The Spiel.  Sometimes we'd get questions.  I answered what I could and referred them to the specialist for answers on what i didn't know.

Margret asked me to put the spiel up on her website, as if she were giving it, so it's here.

(And it's possible that my own experiences have been influenced by my becoming both more of an insider in that I work in biomedical research and have more than a little clinical experience. That two of my areas of focus are Neuro and Biochem doesn't hurt either.)

"Patient's mom" is insider status after a fashion. I think it's more an advocate position, really, than insider.   Gives one the cachet to waltz up to the presiding doctor and say things like, "she's having ongoing problems with diarrhea.  We think it is because she is taking this much magnesium oxide every day.  Is she really leaking magnesium that badly on account of her heart defect?  Nobody has checked her magnesium levels in far too long, and I want to know if she can cut back on the mag and get some relief."  And be listened to.

It's nice to be listened to.

(Yeah, this is still one of my "Not going for an MD after the PhD" years. Though I vacillate a lot.)

Just an individual opinion, from an imaginary internet friend, but I think you would be frickin' AWESOME as an MD.

[tylik]

(Yeah, this is still one of my "Not going for an MD after the PhD" years. Though I vacillate a lot.)

Just an individual opinion, from an imaginary internet friend, but I think you would be frickin' AWESOME as an MD.

Thank you.

That is a response I've heard from people who know me in person, as well. (After the new Taiji class I'm teaching on Sundays, we had a little biomech clinic, and it was pointed out at length, so it's kind of in my face.) And, as is obvious, it's something I'm fairly conflicted about. At one point I was considering MSTP (an MD/PhD program) pretty seriously, but I figured it was a bad idea with the spine injury... and was I ever right! But the spine is doing a lot better.

There are a lot of things about the work I would love. I'm less convinced about the education process, though there are a few schools that are doing better, and schools that would likely give me a free ride* are among them. (The other really interesting variant is some of the DO programs - I'm not sure about their curriculum, yet, but in many ways the environment sounds better, and I could probably be teaching neuro while I was a med student, which would be a serious bonus.)

But, I'm 37, I'm not done with this degree, and it's a bunch more years if I tack on an MD (or DO). Meanwhile, there are so many cool things to do in research... and the Chinese Chen Master I study under is in his sixties, and I'm thinking that if I'm going to spend serious time in China, maybe it should be (or start) sooner rather than later. And there is research I could be doing when I finish my current degree that would have me working in a clinical environment. And one of the best things about working on Taiji with people with chronic pain and various other conditions is that I'm pretty much always going to be working with motivated folks...

Eh. It's particularly funny, sort of, in that my roommate and partner in perfectly legal activities (mostly) is working on an MD/PhD... and in many ways is a lot less dispositionally inclined towards clinical work.

* This is pretty much a requirement. I do not want to be a doctor so badly I will pay for the privilege. But it also looks like there are a few options for which I'm a good candidate.

[Jezabella49]

There are a lot of things about the work I would love. I'm less convinced about the education process, though there are a few schools that are doing better, and schools that would likely give me a free ride* are among them. (The other really interesting variant is some of the DO programs - I'm not sure about their curriculum, yet, but in many ways the environment sounds better, and I could probably be teaching neuro while I was a med student, which would be a serious bonus.)

But, I'm 37, I'm not done with this degree, and it's a bunch more years if I tack on an MD (or DO). Meanwhile, there are so many cool things to do in research... and the Chinese Chen Master I study under is in his sixties, and I'm thinking that if I'm going to spend serious time in China, maybe it should be (or start) sooner rather than later. And there is research I could be doing when I finish my current degree that would have me working in a clinical environment. And one of the best things about working on Taiji with people with chronic pain and various other conditions is that I'm pretty much always going to be working with motivated folks...

Eh. It's particularly funny, sort of, in that my roommate and partner in perfectly legal activities (mostly) is working on an MD/PhD... and in many ways is a lot less dispositionally inclined towards clinical work.

* This is pretty much a requirement. I do not want to be a doctor so badly I will pay for the privilege. But it also looks like there are a few options for which I'm a good candidate.

You're 37?  Wow.  That's how old my daughter was when she died; she had her last birthday in the hospital on the 8th, and passed away on the 14th.

Today (after I'd made the earlier post) I read over her autopsy report again, with more comprehension this time, I think; and I was amazed all over again that her heart kept her going so well, for so long, with a serious unrepaired  CHD all that time.

Free ride = good thing, if you're going after the MD.  Or DO.   . . .  We had an office with 3 (and sometimes 4) DOs who were wonderful.  Did all the usual medicine stuff you would expect, but when a rib got displaced, the doc I saw popped it back in place and did NOT give me muscle relaxers as the previous MD had.  We moved away, and found a new practice.  They're MDs, and they're good.

I'll weigh in on the side of "travel sooner rather than later".  Later gets here, and goes right on by, awful quick.

Oh, yes, and your cool research things sound cool.  And fun.  So does working with motivated folks.

[DavidG]

(Picking this up late after my trip to Greece -- which was fun, but probably pushed my physical limits a bit further than was truly wise)

I have a tendency to be fairly conservative in my opinions about the diagnostic process.  It's possible this leads me to be unfair to others, I realize. But I have strong reservations about anybody who hasn't had the diagnosis from a trained diagnostician with specific experience and training in tender point exams -- because believe me, it's a VERY specific sort of thing, and it's not a DIY exam in the slightest.

I've seen a specialist rheumatologist mis-score the Beighton test for HMS, which is literally so simple that anyone can do it, so I tend to have a fairly dismissive view of doctors as diagnosticians. He scored me at zero, even though I'd just demonstrated putting my palms flat on the floor when touching toes, which is a minimum score of 1. What made things ever so slightly worse was that Beighton has been deprecated as an appropriate test for HMS for about a decade, with the Brighton Criteria favoured instead, and one of the reasons is that Beighton doesn't consider the joints I have problems with (while I'm clearly hypermobile it's not so clear whether I meet the clinical HMS criteria, I definitely don't pass Beighton, I'm borderline on Brighton). Needless to say I'm not flattering when giving my opinion of that particular doctor.

As for people who self-diagnose without ever even looking for trained-exam-diagnostician confirmation at all, I am afraid that I put them in the mind-pocket labeled "speculation" unless and until I get a sense that they have more clues about the whole thing. (Which means it's probably a good thing I'm not gate-keeping for anything that's based on having a diagnosis of FMS, then. The way it is now, it's just my opinion of them that gets a question mark appended, and mostly I never say anything about it... and either learn as we go on that they're more sensible than I first worried, or learn any of a number of other things, and adjust my attitude accordingly.)

It can be very difficult to get a proper diagnosis with things like HMS, FMS and CFS (IIRC there are precisely two HMS specialists in the UK), particularly given that certain health organisations (such as the UK's NHS) have adopted a fairly negative view to the reality of some of them. With even rarer, or worse, orphan conditions it's even worse. I agree that sometimes you have to look at people with reservations, but lots of people go for decades without a clear diagnosis and have to settle on a working one that allows them to deal with all of the everyday functions that force them to provide a label for other people. That's essentially the position I'm in, even if it is borderline as to whether I have clinical HMS or not, all of the stuff about chronic pain and recurrent joint injuries is clearly applicable and close enough to get me by any time I'm not talking to a specialist.

Back on the main topic, though, I am pondering the whole ADD-and-disabilities thing, and thinking of gammas, and thinking of how one copes versus how the average hypothetical person copes. I keep coming back to how we don't always know what makes somebody resilient.

There's an interesting crossover between this and what I was saying about HMS. I'm in the process of applying for our version of disability, the assessment criteria used are very Medical Model and based around a document that lists typical levels of disability expected with various diagnoses. Obviously this is problematical, because it predisposes non-medically qualified assessors to look askance at anyone who isn't presenting the 'proper' level of disability. It's even worse for HMS, because HMS typically doesn't result in disability and can even be beneficial, so anyone disabled by it is by definition atypical and shouldn't be compared to the 'typical' form of the syndrome! Dragging this back to SU, maybe Gammas are the typical expression, while Betas are the atypical expression. Maybe there's a biomedical reason, maybe there's a psychological one, or maybe it's just random chance (aka that thing we don't believe in...)

[DavidG]

My experience was that an FMS diagnosis seemed to mean that I'd be shunted off into pain management, which wasn't effective for me, and didn't address the underlying problems. (It might just have been grumpiness and paranoia that gave me the impression that FMS was treated, even by theoretically sympathetic doctors, as some variant of female hysteria. The whole "pain management" process was really one of the most dis-empowering and humiliating series of experiences I've had as an adult.)

It really does seem sometimes that pain management programmes are either awesome, or awful, with nothing in between. They're pretty much the court of last resort as things currently stand, with patients not referred until doctors have exhausted the alternatives and (as you say) the focus being on managing the surface symptoms not the underlying problem. But if you're willing to work with them on that basis, and they aren't one of the 50% that suck, then they can really be a major step forward in being able to live with your condition. Mine tilted the balance on whether my disability ran my life or I did and I really can't overemphasise how positive a development that was for me. I've just had a flare-up that reminded me just how scary the opposite scenario is.

WRT 'female hysteria', there definitely seems to be an element of that around CFS and FMS, maybe not so much with HMS, but floating around in the general area without a clear diagnosis I'm definitely glad to be male!

I think the current consensus is that I have a (well, several, actually) spine injury, probably a tendency towards lax joints, a ridiculously high pain tolerance, and that I'm a complete hard ass. (Oh, and that I'm an athlete. This still cracks me up.)

That's pretty much where I am. Well, apart from the hardass. And the athlete. And maybe the pain tolerance

That having been said, I've worked with really a lot of people in both Taiji and rehabilitative medicine settings who have various chronic illni and chronic pain conditions. A lot of people seem really happy to have a diagnosis, whether or not it meant anything*, and some of them have even found it a useful diagnosis. *shrug*

I talked about the usefulness of a diagnosis when dealing with officialdom in my reply to Lioness, so I won't repeat that. But there's also a psycho-social element to it. A lot of people faced with disability go through a h*ll of a lot of self-doubt as to whether they are really disabled, or as disabled as other people they see around them (a hierarchy of disability is a bad thing, but even disabled people need to be taught that). People don't like uncertainty and intangibles and a diagnosis gives them a name for their situation, a foundation to build their new self-image around. I've never had a really firm diagnosis and I can live with that as it's apparent there are several different things going on that are intertwined with each other, but very early in my treatment a physio specifically talked about my situation as now being disabled (probably before anyone else would have used the label) and that seems to have served the same purpose. And what problems self-doubt can cause can pale in comparison to the doubt of others. Pretty much all the disablist abuse I experience on the street claims I'm faking my disability and doubt in the workplace can be terribly pernicious. I've even come across people who face doubt or outright denial from their own families. A firm diagnosis can be a real help in those situations, though in the worst of them the only way to open some people's minds would involve a large axe, which the authorities tend to frown on

there is a small subset of the population of people who frequent such communities who find me and my lifestyle pretty threatening, and behave badly.

Ironically that's precisely the same difficulty in believing in disability being complex and unpredictable and counterintuitive that feeds into the abuse we receive from non-disabled people.

[DavidG]

I don't know why people view a psychosomatic illness as fake.

It's not just psychosomatic illnesses, any invisible disability faces exactly the same problems with disbelief. I think to a large degree it's a failure in empathy/imagination. I had to get incredibly graphic in my description of the effects of chronic pain before I got any of my managers to accept that it was real and disruptive. With less revealing descriptions you could see the disbelief slipping onto their faces -- 'I couldn't live like that, therefore you can't be, therefore you're a liar'.

Or why doctors can't seem to explain that they're not a result of the patient's failure to suck it up  and stop whining.

Unfortunately that's precisely what a lot of doctors do believe. My pain management consultant told me it's next to impossible to get doctors who don't specialise in pain management to understand how disabling chronic pain is and undoubtedly the same goes for other poorly understood conditions like FMS and CFS and so on -- look at the history of PTSD and the journey from 'lack of moral fibre' to 'battle fatigue' to serious psychological condition over the course of a century and a host of different wars.

[DavidG]

I get so damned sick of finding yet another bloody limitation... am still learning what will and won't work (i.e. going to the "Bugs Bunny on Broadway" concert Wednesday night means I try to do as little as possible today and tomorrow, and will be unable to do much of anything Thursday and Friday. Hate that. *stabbity hatred*)

Just back from my sailing trip with all the symptoms of an aggravated C-spine and something definitely wrong with my knee (tearing sensations are never a good sign). Maybe putting myself in situations where I'm thrown across the cabin from one side to the other isn't ideal, but sometimes you have to push the limits just to make life worthwhile.

[DavidG]

It was all the mess around the stupid one to ten scale. Though they weren't as bad about it as PT in Cleveland was. (OTOH, these were the people who gave me my reference point for nine.) Yes, so I am self consistent and don't exaggerate. Sorry. (By the time I had to deal with this again I knew the clinical guidelines and would quote them at people who misused the various diagnostic tools.)

I haven't had problems from the medics with that, but I found it helped get my message across to management if I qualified it with examples/reference points they might understand: 'I get migraines, I rate them at 4-5, but I'm hitting 6-7 trying to do my job on a daily basis'.

my doctor would only give two week prescriptions... and you could only call in for a refill during the last couple of days, and he frequently didn't respond in a timely way

Ick! I screwed up a repeat prescription a couple of months ago and it was one of the factors that triggered my flare-up. If my GP wasn't good with getting stuff turned around in 24 hours whenever you need it that wouldn't have been the first time it happened.

[DavidG]

at least I never had a pharmacist lecturing me on what medications I should or should not be taking.

My pharmacy is generally good, but they do have several different pharmacists and the one who looks rather like King George V once announced to the entire store in a booming voice "Butrans patches, for ONE month ONLY". I just looked at him and said "Or in my case, indefinitely" and haven't had any trouble since

[DavidG]

...and I could launch into a whole critique of the medical school system, and the ways in which it is not effective in educating people (which everyone's known for years, but only a few schools have really started to address), and the problems with trying to concentrate so much authority around the single, semi-standardized MD... but where would be the fun in that?

A friend has just done her masters thesis on how physiotherapy degrees fails to train their students to understand disabled people and what they actually want from their treatment, I was one of several disabled people she roped in to serve as a sounding board and direct the thesis focus where we thought it was needed.