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slipjig3Back in November, I wrote up this post about finally—finally—getting the ADHD diagnosis I'd been seeking for years. I talked at length about the relief I felt at having an explanation for my lifelong attention span problems, and looked forward to beginning medication and seeing what happens next. It was nothing short of exhilarating, being at last on the proverbial road to Getting Better.
Since then, that road has consisted of eleven or so red lights, followed by a sharp left.
Given how long it took me to get my shoe in the door of someone, anyone, who would even consider diagnosing me with ADHD or anything else treatable via controlled substances, I should have seen the bureaucratic stonewall that loomed ahead. My GP refused to write the prescription, claiming insufficient background with psych meds; when my therapist tried to follow up, she left dozens of unanswered messages at my doctor's office before throwing up her hands in surrender. Her own mental health facility had a several-month waiting list, as did every other provider in a 30-minute radius. And once I'd resigned myself to a waiting game, my health insurance lapsed, leaving me with no options at all while I tried to get it reinstated, a process I described as being like the Atari 2600 ET the Extra-Terrestrial game, except that every fourth screen it punches you in the balls. (I'm still as of this writing uninsured.)
It has been suggested that my autobiography should be titled ...And Then It Got Weird. At this point in our story, things got immeasurably weirder.
As many of you know,![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
rain_herself is currently working toward her doctorate in psychology. During her spring semester she took a class on diagnostics, and one of the projects in that class involved working in a team with two other classmates to choose and execute a focused set of tests for a specific volunteer. I was chosen as subject because (a) I'm readily available, (b) I find these things weirdly fun, and (c) my recent diagnosis gave them something specifc to focus on. So one afternoon after work, I headed over to her college for about an hour's worth of testing, a dozen tests in all.
And I broke the tests.
All of the tests selected revolved around attention and memory in some capacity or another, usually having me memorize number strings or words or pictures and then parroting them back. Roughly seven of them are specifically designed as ADHD indicators; of these, exactly zero indicated likelihood that I have ADHD. Not a damn one, because I kept passing them. Not just passing: demolishing.
Let me give you an example: One of the first tests involved the tester (one of Andrea's classmates, in this case) rattling off pairs of words. Some of them were obviously related, like "sky / cloud" or "city / town," while others weren't, like "tree / luck." (Fans of the Milgram experiment will recognize this as the fake experiment-within-an-experiment that the unseen "subjects" were supposed to be learning.) The pattern was that he would read off the 20 or so pairs, one at a time, and then again one at a time he would name off the first halves of each of the pairs in random order, and I'd have to recall the second halves, e.g. if he said "sky," I'd have to say "cloud." After doing this once, we'd repeat the whole process with the same 20 pairs, only he'd read them off in a different order (still clustered in the same pairs, though), going through the whole shebang four times in all. The idea was to track my learning curve, whether my score went up over time and how quickly, and whether I forgot any I used to know along the way.
I got them all right the first time, got them all right the second time, got them all right the third time, got them all right the fourth time, got them all right when the rest of the testing was done and he asked if I still recalled any of them. They were supposed to be tracking trends, and the trend was I just plain knew it, full stop. And the other tests went pretty much the same way. In the end, the three of them came to the inescapable conclusion that I simply don't have ADHD, a diagnosis backed up by the entire class who heard their presentation, and their professor. Well, fuck, now what?
We had a long, hard talk about the "now what?" question on the drive home after the presentation. I wasn't as upset as I might have expected upon losing my tidy wrapped-up-with-a-bow capital-A Answer to what's wrong with me. I think that's because the tests didn't just refute the diagnosis, they refuted the very idea of what I was capable of. It's kind of like thinking your ankle's sprained, then discovering that hey, you really can dance after all! But that said, something clearly wasn't and isn't right. I don't function the way I want to be functioning, and there's something blocking my attempt to fix it, and if it's not ADHD then what the Hades is it?
That's when Andrea brought up the one test that I didn't do well on. It involved a pair of stories that I was told to "remember exactly." I failed that one abysmally, and stressfully so. Because I was going for exactitude, I tried to store it all in my brain verbatim, and when I fell a step behind I had no way of getting it back and more or less surrendered. I managed to pull out some details—cities, dollar amounts, times of day—but that was about it. Andrea pointed out that I missed the whole focus of the exercise, in the way that former "gifted children" often do: I completely skipped over the stories' emotional content. Each tale had some bit that listeners could empathize with: worry over money, a small crisis, relief, love. I came away with none of that because I was so laser-sighted on "getting it right" that I didn't internalize what was actually going on.
I blinked as she explained all this to me. "Wait...are you saying that this is all just a weirdly-manifesting anxiety disorder?"
That's exactly what she was saying. And she was backed up on that, too. Classmates and professor.
I'm sure many of the people reading this who know me in real life are reading about me having an anxiety disorder are howling, "Oh, now THERE'S a shock." I knew it was there, too, and I knew it was pervasive. I knew that it robs me of my initiative, my self-esteem, my art, my social life, a bunch of my past relationships. I had no idea it was robbing me of my memory and focus as well, and now I'm torn between wonder that it's all connected and wanting to punch things. I've been joking for years that I really only have one problem with 28,917 faces, but apparently I wasn't actually kidding. The hardest to learn was the least complicated, as the Indigo Girls sang.
So again, I ask, "Now what?" Medication is still out of the question without insurance, and I'm not sure I'd take it even if it were an option; I like Klonopin just little too much, if you follow. I do have a Klonopin playlist on my iTunes now for the commute home, all acoustic, warm, familiar music. I listen to rain sounds at work. I do the breathing thing. I've learned to notice when my shoulders are hunched around my ears and how to bring them down again. And I've begun to recognize where my focus goes, and to let the breathing and the music and the rain sounds put it back where I want it.
It all helps, but jeezum crow, this is such a big dragon to slay, one I'm all too familiar with by now, and one that's scorched me way too often. I know I'll get there, knowledge that's a big deal in itself. Wish me luck. Be patient with me. We'll get there. Promise.
Since then, that road has consisted of eleven or so red lights, followed by a sharp left.
Given how long it took me to get my shoe in the door of someone, anyone, who would even consider diagnosing me with ADHD or anything else treatable via controlled substances, I should have seen the bureaucratic stonewall that loomed ahead. My GP refused to write the prescription, claiming insufficient background with psych meds; when my therapist tried to follow up, she left dozens of unanswered messages at my doctor's office before throwing up her hands in surrender. Her own mental health facility had a several-month waiting list, as did every other provider in a 30-minute radius. And once I'd resigned myself to a waiting game, my health insurance lapsed, leaving me with no options at all while I tried to get it reinstated, a process I described as being like the Atari 2600 ET the Extra-Terrestrial game, except that every fourth screen it punches you in the balls. (I'm still as of this writing uninsured.)
It has been suggested that my autobiography should be titled ...And Then It Got Weird. At this point in our story, things got immeasurably weirder.
As many of you know,
rain_herself is currently working toward her doctorate in psychology. During her spring semester she took a class on diagnostics, and one of the projects in that class involved working in a team with two other classmates to choose and execute a focused set of tests for a specific volunteer. I was chosen as subject because (a) I'm readily available, (b) I find these things weirdly fun, and (c) my recent diagnosis gave them something specifc to focus on. So one afternoon after work, I headed over to her college for about an hour's worth of testing, a dozen tests in all.And I broke the tests.
All of the tests selected revolved around attention and memory in some capacity or another, usually having me memorize number strings or words or pictures and then parroting them back. Roughly seven of them are specifically designed as ADHD indicators; of these, exactly zero indicated likelihood that I have ADHD. Not a damn one, because I kept passing them. Not just passing: demolishing.
Let me give you an example: One of the first tests involved the tester (one of Andrea's classmates, in this case) rattling off pairs of words. Some of them were obviously related, like "sky / cloud" or "city / town," while others weren't, like "tree / luck." (Fans of the Milgram experiment will recognize this as the fake experiment-within-an-experiment that the unseen "subjects" were supposed to be learning.) The pattern was that he would read off the 20 or so pairs, one at a time, and then again one at a time he would name off the first halves of each of the pairs in random order, and I'd have to recall the second halves, e.g. if he said "sky," I'd have to say "cloud." After doing this once, we'd repeat the whole process with the same 20 pairs, only he'd read them off in a different order (still clustered in the same pairs, though), going through the whole shebang four times in all. The idea was to track my learning curve, whether my score went up over time and how quickly, and whether I forgot any I used to know along the way.
I got them all right the first time, got them all right the second time, got them all right the third time, got them all right the fourth time, got them all right when the rest of the testing was done and he asked if I still recalled any of them. They were supposed to be tracking trends, and the trend was I just plain knew it, full stop. And the other tests went pretty much the same way. In the end, the three of them came to the inescapable conclusion that I simply don't have ADHD, a diagnosis backed up by the entire class who heard their presentation, and their professor. Well, fuck, now what?
We had a long, hard talk about the "now what?" question on the drive home after the presentation. I wasn't as upset as I might have expected upon losing my tidy wrapped-up-with-a-bow capital-A Answer to what's wrong with me. I think that's because the tests didn't just refute the diagnosis, they refuted the very idea of what I was capable of. It's kind of like thinking your ankle's sprained, then discovering that hey, you really can dance after all! But that said, something clearly wasn't and isn't right. I don't function the way I want to be functioning, and there's something blocking my attempt to fix it, and if it's not ADHD then what the Hades is it?
That's when Andrea brought up the one test that I didn't do well on. It involved a pair of stories that I was told to "remember exactly." I failed that one abysmally, and stressfully so. Because I was going for exactitude, I tried to store it all in my brain verbatim, and when I fell a step behind I had no way of getting it back and more or less surrendered. I managed to pull out some details—cities, dollar amounts, times of day—but that was about it. Andrea pointed out that I missed the whole focus of the exercise, in the way that former "gifted children" often do: I completely skipped over the stories' emotional content. Each tale had some bit that listeners could empathize with: worry over money, a small crisis, relief, love. I came away with none of that because I was so laser-sighted on "getting it right" that I didn't internalize what was actually going on.
I blinked as she explained all this to me. "Wait...are you saying that this is all just a weirdly-manifesting anxiety disorder?"
That's exactly what she was saying. And she was backed up on that, too. Classmates and professor.
I'm sure many of the people reading this who know me in real life are reading about me having an anxiety disorder are howling, "Oh, now THERE'S a shock." I knew it was there, too, and I knew it was pervasive. I knew that it robs me of my initiative, my self-esteem, my art, my social life, a bunch of my past relationships. I had no idea it was robbing me of my memory and focus as well, and now I'm torn between wonder that it's all connected and wanting to punch things. I've been joking for years that I really only have one problem with 28,917 faces, but apparently I wasn't actually kidding. The hardest to learn was the least complicated, as the Indigo Girls sang.
So again, I ask, "Now what?" Medication is still out of the question without insurance, and I'm not sure I'd take it even if it were an option; I like Klonopin just little too much, if you follow. I do have a Klonopin playlist on my iTunes now for the commute home, all acoustic, warm, familiar music. I listen to rain sounds at work. I do the breathing thing. I've learned to notice when my shoulders are hunched around my ears and how to bring them down again. And I've begun to recognize where my focus goes, and to let the breathing and the music and the rain sounds put it back where I want it.
It all helps, but jeezum crow, this is such a big dragon to slay, one I'm all too familiar with by now, and one that's scorched me way too often. I know I'll get there, knowledge that's a big deal in itself. Wish me luck. Be patient with me. We'll get there. Promise.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2015-07-02 03:17 am (UTC)(no subject)
Date: 2015-07-02 03:22 am (UTC)(no subject)
Date: 2015-07-02 10:07 am (UTC)(no subject)
Date: 2015-07-02 12:30 pm (UTC)(no subject)
Date: 2015-07-02 01:34 pm (UTC)Do you remember "Bloom County" and Milo's closet? Yeah, I have one too. :-) I am pretty good dealing with the anxiety during the day, it is at night when it jumps me and I wake up with anxiety/panic attacks.
I think that you are doing the best you can- with what you have and it is impressive.
(no subject)
Date: 2015-07-02 02:04 pm (UTC)*hugs* Good luck!!
(no subject)
Date: 2015-07-02 02:37 pm (UTC)My not-too-powerful, not-too-expensive anxiolytic of choice is hydroxyzine, for what it's worth. I need to get a new prescription for it at some point.
(no subject)
Date: 2015-07-03 04:53 am (UTC)It sounds like you're on the right track with your coping techniques. Being self-aware and learning your triggers goes a long way toward managing anxiety. Don't be afraid to let the people you see often know if there's something they can do to help you. You might be surprised by how willing people will be to help, even co-workers and acquaintances.
It's a big damn dragon, but if it's the right answer, when this dragon goes down, the others slink away into the shadows.
________________________________________________________
The remainder of this comment is unsolicited advice for when you have insurance again and can look at medical options:
My anti-anxiety med is also my anti-depressant -- currently venlafaxine (Effexor); Cymbalta was slightly better for both but not enough better to justify the extra cost. Getting my blood pressure under control (another generic, atenolol) also made a huge difference in my anxiety levels. If your BP runs even mildly high, it may be worthwhile to poke at that as well when you see your doctor. Those two plus my BCP cost me less than $20 per month, allow me to be a person I don't hate, and help me to live a normal, for geeky values, life. Before meds, I only left the house for work and groceries, and those were getting harder. As I keep pointing out to people whenever I'm advocating for being open about psych conditions and medications, you wouldn't know me if I weren't medicated (and the same is probably true of people you think you know better, who just don't talk about it).
As far as liking it too much, a daily maintenance medication shouldn't have that kind of effect. That's usually the sort of thing that's given for acute or breakthrough symptoms, whether it's treating anxiety, pain, or excessive use of the color green. The goal in finding the correct level of maintenance medication isn't to be always at zero in a scale from zero to ten, the goal is to stay within the range of "normal" where normal has its ups and downs. (Ask me sometime why mood stabilizers were a bad choice for me). Also keep in mind that chemical dependency and addiction are not the same thing. I would prioritize my insurance and medications over food and over a great many other things, not because there's any kind of high, or whatever it is people look for in drugs, but because without the meds I am not a functional human being, and I can't change my life to get any of the other things back. There's no temptation to take more than prescribed, and if there is, I talk to the doctor about whether it's time to adjust my dosage. Getting to that point can mean a year or more of trying different drugs and different dosages, because brain chemistry is far from an exact science, and for some people there simply isn't a good pharmaceutical solution. But it's worth trying to see if you can find one, I swear by anything you hold sacred.
(no subject)
Date: 2015-07-13 10:43 pm (UTC)And the first thing that struck me about the memory tests, as you described them, is that they're a poor diagnostic for ADD. You're doing something unusual, which is focusing; you're doing something you find fun, which is focusing; and you're exercising a different kind of memory than the things-falling-out-of-your-head forgetfulness you described in your last post. You don't normally have trouble juggling several different things in working memory, which is one of the skills that gets a workout when you hang around ridiculously brainy people. (Of whom you are one.) Some people with ADD/ADHD will fail those tests, but passing them doesn't mean anything except that your flavor of ADD doesn't include that particular symptom.
I say this with some defensiveness because flakiness and skipping steps and forgetting tasks I'm not invested in, yep, totally there. But forgetting information that interests me? I'd say "Ask me about Japanese courtesans," but you don't really want that unless you have plenty of spare time. And an unnatural interest in Japanese onomastics. Which doesn't make a dent in my inability to prioritize tasks, or pay attention in meetings, or finish ANYTHING. If someone tried to deprive me of my amphetamine salts because of my score on a memory test, I'd shank 'em.
You might have anxiety, either in place of ADHD or on top of it. But your description of inattentiveness, memory holes, cluttering, and just plain inability to get moving rang so true to me that if I were you, I wouldn't give up on an ADHD diagnosis just yet.
Which leads to part 2 of my comment: My psychiatrist might be taking clients. He diagnosed me based on my therapist's recommendation and my own account of my symptoms, no tests required. He may also be able to help you with an anxiety diagnosis. Would you like his name?