Gamma Research tie-in? Alert Frost, Villette.

[CJ]

But this is incredibly broad and while at the time most of them had been diagnosed with ADHD (and I suspect a whole subset would be diagnosed with Asperger's now) I think that's mostly a label we plaster over a whole region of the map we don't understand very well.

I tend to think there's a massive degree of overlapping symptoms and patterns of symptoms in the various autism spectrum and developmental disorders.

Oh yeah. My sister is 43. She just, within the last few months, finally got an official diagnosis of Asperger's. When she was a kid, she got the ADD label for a while - this was prior to the ADHD label being used - though it obviously wasn't the right diagnosis. Then they got her the dyslexia diagnosis, and a teacher who had training to help dyslexics and that made a huge difference. So the school system figured they'd handled one problem, she should be fine now, right?

To be fair to them, Asperger's was hardly known at the time. I think I was in my late teens (my sister is two years older) when I first read a description of it. And immediately knew that was what my sister had.

Years later, with lots more knowledge of Asperger's around, my niece hits the school system. And at first they wanted to call her ADHD and medicate her for that. My brother fought that one. Which eventually led to a proper Asperger's diagnosis and classes to help her deal with things. So even over thirty years later and with significant more understanding, some of the symptoms overlap enough that ADHD came up as a diagnosis before Asperger's. And it still takes someone who knows the kid really well to say "that's not it".

[jennygadget]

Has anybody discussed resilience in terms of gamma-hood and of resisting gamma-hood?

I think the PTB are doing precisely that with Hafs!

Yes, and I also think maybe they are exploring the whole idea of label vs. identity - or maybe that's just my epiphany for the day:

We've been talking for a while now how beta and gamma don't really work anymore - so has the team - and yet we all keep using them because, at the moment, what else is there?  More specifically, it seems as though it's likely that the line between gamma and beta isn't as clear as we act like it is (drawing parallels to your other recent comment, dwg), and yet we keep using those terms as if they are.

Related to all this, there seems to be a definite resistance to calling Hafs a gamma - and I think it's because a gamma is a label we use to identify dangerous people.  And yet Hafs and Chaz both seemed to have no problem (inside certain circles) calling themselves betas - because beta is closer to an identity that people who have agency claim for themselves.

And I wonder if this colors peoples opinions on ADD and similar conditions.  How much of one's reaction upon hearing it mentioned is a result of it being something that other people use to label (and therefore often dismiss) you (or someone else) - or, on the flip side, one's reaction being colored by having experienced the term as an identity that you have claimed for yourself in order to explain the parts about you that don't match up with everyone else expectations.

I see this with the kids that are eligible for what we call DCS (Department of Children's Services) library cards too.  Aside from the fact that obviously there is a wide range of attitudes among the kids when it comes to discussing their situation, it's also really easy to do something that makes them close down - and that something is usually using labels rather than offering information.  Labeling them as "foster kids" - as if that one thing is all they are, or as if they are things themselves - rather than labeling the card in order to identify it as a tool made specifically to assist them - tends to shut them down and is obviously beyond counterproductive in making them feel welcome at the library.  Being up front and matter of fact and simply factual about the existence of the card and the reasons for it is more likely to generate open and trusting responses.

[Lioness]

jennygadget, that whole post is beautiful food for pondering. I am going to do that with it for a long time, I suspect.

[DavidG]

Yes, and I also think maybe they are exploring the whole idea of label vs. identity - or maybe that's just my epiphany for the day:

We've been talking for a while now how beta and gamma don't really work anymore - so has the team - and yet we all keep using them because, at the moment, what else is there?  More specifically, it seems as though it's likely that the line between gamma and beta isn't as clear as we act like it is (drawing parallels to your other recent comment, dwg), and yet we keep using those terms as if they are.

When I sit down to analyse it, I've been thinking of Beta and Gamma as much more of a spectrum, in the same sense as the Autism Spectrum or the Neuro-Diverse Spectrum, probably since the end of last season, maybe a little earlier given the existence of Gammas who haven't gone completely over to the Dark Side. Hafs is really pushing the boundaries on that one because it seems she's only intermittently gamma and fighting to stay that way. That sort of suggests it's possible to move within the spectrum, with both Gamma and Anomaly having a say in where they end up.

[DavidG]

To be fair to them, Asperger's was hardly known at the time. I think I was in my late teens (my sister is two years older) when I first read a description of it. And immediately knew that was what my sister had.

My sister rang me, having just completed a course to teach her how to spot dyspraxia in the kids she teaches, to say that I hit pretty much all of the diagnostic criteria she'd just been told to look for. But some of my stuff doesn't really match completely with dyspraxia, but does show up in other developmental disorders. So when I say I think there's massive overlap I'm really extrapolating from my own situation.

[tylik]

Dear me. This may turn into a fibro rant. If so, perhaps I should move it elsewhere. I will do so if anybody thinks it's detrimental to have it here.

Interesting. I do believe I agree with you there, particularly with regards diagnostic criteria. Having a clear etiology would be wonderful, and in that sense I definitely agree that your earlier statement that "we're highly ignorant in describing those problems, differentiating them from eachother, and treatment is often pretty crude" fits fibro as well. But I mostly wind up hearing about people's diagnoses -- or lack thereof, which is usually what gets me all gripey, though I try not to jump in people's faces about it.

I was diagnosed with fibromyalgia (FMS) in the early/mid nineties, and had never heard of it before I was diagnosed.  Given my experience when I was diagnosed by a rheumatologist who had been specifically trained in adminstering the "tender points" exam, 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. 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.)

I had most of a fairly long response to this in a text editor... and then crashed my computer. (A known issue having to do with suspending when an SD card is in the reader. Mostly I'm liking Lilting Lemming, but having this regression pop up annoys me since I use SD cards in the cameras I use to track my surgical animals.)

So...

I actually don't have much clue what most people mean when they say diagnosis. I've had at least four physicians suggest and or press for an FMS diagnosis for me. Some of them use the tender point test, and knew how to, and some of them didn't. (I agree it isn't a DIY thing - but I must add that a lot of people with MDs have various degrees of suck in their diagnostics as well. Actually, generally.) 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.)

So, as this developed, I fought the diagnosis tooth and nail. And whoah but I'm a grump about the whole thing. 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 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 have tended to avoid the online communities, especially those that aren't very fitness focused. This is mostly because 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. (Look, kids, I have no illusions that what has so far worked for me is going to work well for other people. It kind of amazes, me, but I'm going with it. I'm really sorry if my very existence feeds into your rampant insecurities. But not so much so that I will take to my bed to support your world view. Feh.)

This attitude stuff is likely to get an overhaul yet again, and soon, because I need to rebuild my self-care program preparatory to travel (Montreal! New Zealand! Melbourne! maybe even exotic Maine!), so I'll be looking at all my health stuff and checking the current treatments with an eye to deciding whether I'll tweak what I'm doing.  (I'll be researching with particular attention to those which are NOT medication-based, because the non-medication-based ones are sometimes easier for me to implement at lesser cost and risk, and having complementary therapies has worked pretty well for me, but that's a preference solely based on my personal experience and on having a GP who is willing to suggest meds if they seem warranted and if I'm not getting somewhere on my own, or if the getting somewhere is costing me so much it impedes other good life stuff.)

Hm. Wasn't a rant after all, I guess.

Good luck! When I was having a lot of problems, travel was pretty hard for me, though that's gotten a lot better the last few years.

* I mean this quite specifically - a great number of people have expressed the sentiment that just having a name made them feel much better about things, regardless of any impact or lack of impact on future treatment.

[eschatonic]

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 mean this quite specifically - a great number of people have expressed the sentiment that just having a name made them feel much better about things, regardless of any impact or lack of impact on future treatment.

You know, I see this all the time on those Medical Mystery tv shows, people are so happy just to know the name of what's wrong with them, even if there's nothing helpful to be done about it. Maybe part of it is relief after going from doctor to doctor trying to convince a medical professional that actually there is something wrong and it's not all in their heads*, or maybe it's because knowing the cause of your problems takes away a lot of unhelpful anxiety. Because if you can say, I have problem X, then you can look it up and see where it's going to go and if it'll get worse or better or be fatal or what, rather than just lying awake at night wondering.


* I don't know why people view a psychosomatic illness as fake. 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. If you are under such stress or in such an unbearable situation that it is being expressed by your body as constant pain/gastritis/bleeding ulcers/skin disease/whatever, this is not something you should ignore! Therapy is cheaper than cardiac events or chronic drug addition/alcoholism or suicide attempts or psychotic breaks, which are all potential end points for people under unbearable strain.

[glinda_w]

Coming in late, and probably missing things others have said (between a visitor from Europe last week and a horrible crisis in a friend's life which has had me spending more time on the phone in the last ten days than I normally spend in several months, I've set myself up for a nice little fibroflare; and sometimes you choose paying those prices, y'know? But one of the things that's not happening is me staying caught up here, or on LJ.)

Dear me. This may turn into a fibro rant. If so, perhaps I should move it elsewhere. I will do so if anybody thinks it's detrimental to have it here.

I was diagnosed with fibromyalgia (FMS) in the early/mid nineties, and had never heard of it before I was diagnosed.  Given my experience when I was diagnosed by a rheumatologist who had been specifically trained in adminstering the "tender points" exam, 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. 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.)

Oh, yes. I was diagnosed with the CFS within 6 months after onset, which I know is unusual and fortunate, but my family practice guy at the time is also a rheumatologist, and knows what to look for. Also, I had the typical viral-onset sort, where I got the flu in March, and never got over any of it except the respiratory stuff. He also probed the tender points, and I had no idea why, as I didn't react. Every visit, same probing, same results, until five years later, when all of a sudden I was practially on the ceiling... thus the fibro diagnosis.

I agree with you about those who self-diagnose, though. It's a data point, and their further actions either have me quietly avoiding engagement with them, or sort of welcoming them to the club, as it were.

This attitude stuff is likely to get an overhaul yet again, and soon, because I need to rebuild my self-care program preparatory to travel (Montreal! New Zealand! Melbourne! maybe even exotic Maine!), so I'll be looking at all my health stuff and checking the current treatments with an eye to deciding whether I'll tweak what I'm doing.  (I'll be researching with particular attention to those which are NOT medication-based, because the non-medication-based ones are sometimes easier for me to implement at lesser cost and risk, and having complementary therapies has worked pretty well for me, but that's a preference solely based on my personal experience and on having a GP who is willing to suggest meds if they seem warranted and if I'm not getting somewhere on my own, or if the getting somewhere is costing me so much it impedes other good life stuff.)

Hm. Wasn't a rant after all, I guess.

Nope, not a rant. I'm... having issues with the attitude stuff, still. 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*)

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.)

Oh, ghods, that. Dismissive, with a side order of "all you need to do is change the way you think about the pain, and you'll be fine. What, you're not fine? Then it's your fault, you're not doing things the right way." Went through that with the migraines, in my childhood, and my teens, and my twenties, into my mid-thirties. And I've been very fortunate in my doctors the last few years. (Social Security Administration, however? Let's not go there. *suppressed growling*)

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* 

<<trim>>

* I mean this quite specifically - a great number of people have expressed the sentiment that just having a name made them feel much better about things, regardless of any impact or lack of impact on future treatment.

Yes. Just having the label, and it being something "real" and not dismissed as psychosomatic, can be a very, very good thing. Even if there's no fix for it, just being able to find out what's likely to happen...

[tylik]

Oh, ghods, that. Dismissive, with a side order of "all you need to do is change the way you think about the pain, and you'll be fine. What, you're not fine? Then it's your fault, you're not doing things the right way." Went through that with the migraines, in my childhood, and my teens, and my twenties, into my mid-thirties. And I've been very fortunate in my doctors the last few years. (Social Security Administration, however? Let's not go there. *suppressed growling*)

It wasn't even that, so much, exactly. They didn't try to tell me it wasn't real. They were happy to prescribe drugs, they were happy to inject steroids into my spine...

It was all the times I'd show up for an appointment, and get chewed out because I didn't have someone with me to drive me home, when they didn't tell me I'd need someone. And I'd end up in tears. (And then talked them into doing the procedure without sedatives or anesthetic - which I preferred - and then drove myself home (which was pretty stupid.) (But then, it wouldn't have been easy for me to come up with someone to call in the first place, and when I'm feeling like that, it's just not going to happen.)

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.)

Or the constant nightmare that was getting refills. I wasn't even on anything with a particularly high abuse potential (though I was offered opiates rather a lot). But 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. The repeat experience of begging for medication is *really* one of those things I don't ever want to deal with again. Really, the whole bit of knowing that there were things that could help in the short term, but they weren't going to fix anything, and I was completely dependent on other people for the short term fixes, and they weren't reliable, and no one was helping me towards anything long term. And it was almost a weekend. And I already hadn't been able to sleep for the last 36 hours, and I felt painfully like a junkie.

Yes. Just having the label, and it being something "real" and not dismissed as psychosomatic, can be a very, very good thing. Even if there's no fix for it, just being able to find out what's likely to happen...

I didn't get dismissed like that much, (well, by the time I really saw anyone, I was vomiting most afternoons, and passing out from time to time). Though there was a lot of the subtle sense that there must be something wrong with me if I wasn't getting better. But I don't remember at any point along the way feeling like someone had given me a diagnosis that was a key to things, and gave me... anything, really.

And now, of course, I deal with so many people with really stupid diagnoses, it's kind of hard for me to imagine a diagnosis giving comfort. Oh, yeah, four bulging disks and straightforward symptoms of nerve impingement means... fibro! Of course!

[CJ]

Having a diagnosis didn't give me comfort but it seemed to make doctors a lot happier and gives me something to tell people!

I have essential tremor. I've had it as long as I can remember. When I was a kid, every time I went to the doc for a physical, they'd test me for something else and say "no, that's not it". Which is good, considering the things they were testing for. I wasn't particularly concerned, since it's such a minor thing, and I've always had it, so I'm used to it. When someone finally knew the medical term and wrote it down on my chart, the other docs at the hospital (small, local, only three or four docs handling the GP type of things) asked me all sorts of questions. Which I figured they were doing so they could diagnose it when they saw it again.

My problem is such a minor thing compared to other people who are struggling to figure out what's wrong. But I do see how having a name for it can make it a lot more manageable. Alternatively, being able to say "It's not this and here's why" is a good thing, too.

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.

[saoba]

Refills. Gah. Caution- Rant ahead. 

When we moved to the next town over I kept my very good doctor because she is very good and getting onto her patient roster is very difficult because she's in demand.

But we thought that for medication refills using the pharmacy in our new town would make more sense. Except, no, they are a giant pain to use. They don't call your doctor to get more refills, they also don't call YOU and say there's no more refills left on this. Which is a hell of a thing to find out at the close of business on a Friday of a three day weekend. They also somehow failed to properly file my prior authorization from my insurance for a variance on a medication and every single month I had to call my insurance, get them to look it up and fax it and then wait another day because, no the pharmacy hadn't called me to tell me there was an issue.

Never mind the pharmacist questioning my taking one of my medications because 'most people don't need it for that long'. Most people do not have this tested and medically verified chronic condition.  And why am I not on this other class of medications instead of pain killers? Well, because that other class of medications gave me terrible side effects, aside from not actually helping.
   
The final straw was they tried to overcharge me- $75 for a medication I knew was covered and my copay is $10, thank you and good day.

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.

[glinda_w]

Refills. Gah. Caution- Rant ahead. 

Oh, I hear you. *much sympathy*

When I moved over here nearly four years ago, I was less than happy to find out that Bartell Drugs, various branches of which had been my pharmacy for 15 years or so, has no pharmacies/stores in Kitsap County. So... tried Rite Aid. Your description equals some of the f$ck-ups they came up with, though at least I never had a pharmacist lecturing me on what medications I should or should not be taking.

Soooo... my Medicare Plan D plan has a program where, if you use their refill-by-mail/phone/internet service, you pay one month's copay for three months' supply of all generics. So I switched. They did not manage to get one single month's worth of refills correct (and the screwups were different each month - I have no idea how they managed to do so many things wrong). I finally decided I'd rather pay more and not have the frustrations.

Now I'm using the Safeway pharmacy, and there've only been a couple of bobbles, usually because my doctor, or whoever was subbing for her if she was out of office that day, didn't get back to them with the OK for a refill (three of my 'scrips are in the "new prescription every month - thank you soooo bloody much, FDA - category).

Yeah, ranting here, too.

[eschatonic]

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.

[Elizabeth Bear]

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.

Amazing how often I've had that experience.

The telephone company tried terror tactics on me when I cancelled my land line.

"What if the world burns down and you need to call 911?"

"I'll call from the neighbor's phone."

[eschatonic]

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.