Oooh, i've been waiting to do a big controversial medical based post, but I just didn't know what the best way of contextualizing it all would be.
I was going to wait until I got some feedback, I was also going to post this as 2 separate posts... but you know what? It's May Day, and I mention Kaiser Permanente folk that went on strike, so that seems good enough of a connection to me! (Plus i'm going to take the next two days off, so maybe read this in stages? I don't know, i'm impulsive and I didn't sleep at all last last night.)
So to begin, a "Full disclosure" was one of the pages from #ADHDGuideForByArtists version 1 (to keep me out of trouble):
I'm pretty sure I need some kind of disclosure because this was my favorite part of the rough draft of the 'Zine' (ADHD guide for/by Artists) that i think would probably keep it from wider publishing and distribution (because it's TOO useful):
Unfortunately, I am not going to transcribe this like i normally would for access reasons, because that would make it too easily... google-able? So like Ubu-Web and Library Genesis, let's just keep a good thing going by not talking about Fight Club.
Ok, let's just keep the controversy rolling shall we?
This is what is really confusing me right now...
so what did my doc do? he increased my dosage of Wellbutrin (it's a stimulant, i just said that i'm having trouble sleeping???) and then he prescribed Seroquel, because I guess secondary and tertiary meds are a totally normal thing?
(Note to self: Hedva's Letter to a Young Doctor is MUCH more appropriate in this context, this is just a neat little placeholder)
I'm STILL going to see the meds through, I'm still going to give it a chance over the next few weeks. I made sure to ask A TON of questions (what happens if i can't afford it anymore, what would 'going cold turkey' be like?) But it turns out (according to the Body Keeps the Score) these aren't the most important questions:
All related Excerpts From: Bessel van der Kolk MD. “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.”
It really seems to me that when it comes to an ADHD diagnosis, there's this huge divide between WHEN someone was prescribed medications. Actually, medications aside, it really seems that those who were diagnosed as children (and maybe got an IEP or a 504 or... something) and those who were diagnosed later in life, like in their 30s, have such vastly different views of how to 'take care' of ADHD. For me personally, i'd never really looked into the label, and was actually put on Adderall but not explicitly told that it is for ADHD, weird huh? When i did finally look into #TimeBlindness something finally clicked and sooo much made depressing sense.
but for anyone who was diagnosed when they were younger and therefore put on meds as a child... yeah that is terrible. i feel like i am 'out' as someone with adhd, and people tend to seem meek about admitting that they have a doctor that put them on Adderall, but to a kid, that label is utterly life defining, and that's a travesty.
i'm not going to say that it's all a big pharma conspiracy, because i think most conspiracies are a slippery slope into ignorance, BUT i can imagine why there's such a huge pushback on meds, and the preference to run for 3 hours straight every day instead of meds, or to avoid all medications all together and just feel all of the feelings, despite how difficult it will be.
If a kid is rambunctious and an adult has the power to get a medication that can slow that tyke down, there is a power imbalance there that likely will not go unchecked because it could be prescribed by a teacher, by a guardian, by the state... unfortunately, the most avid non-prescription/medication folk are... Scientologists, so i'm somewhere in between.
What mostly bums me out is that my meds generally make me feel like I can be a bare-minimum level of productive, but that should definetely send some alarm bells, it did to me, and it seems like an obvious trap. Why? Because what i consider the bare-minimum level of productivity is INSANE (just look at this whole post), so i'll definitely be working on feeling feelings rather than helping... whoever gains the most from me working myself to death.
This is where i'm suppose to say "because Capitalism" right? Capitalism wants me to work to death, and before meds, I was just bad at Capitalism... i was always late, could only be goal oriented towards seemingly useless stuff that only interested me... the two ways i think i couldn't possibly get away from Capitalism were the impulsive purchases/money decisions, and the fact that if i use my hyperfocus for 'productivity' and for competitive gains over others, i am the problem.
So this is another big reason I want there to be a robust ADHD Guide that can show a bigger picture that can speak to this major gap between where medical information is right now, and all of the holistic stuff that isn't taken seriously.
Although even the holistic stuff rests somewhere between many ideas from many cultures/ways of doing somatic therapies, of how to make the unconscious conscious, of how its best to become self-aware but without any instructions (i.e. meditation, talk therapy), and it also includes... the cultural appropriation of that white Sikh guy in Beverly Hills with his super expensive prescriptions (and he doesn't take insurance btw).
I think we're all still waiting for the day that 'alternative medicine' is no longer allowed to be seen as subservient to the larger medical industry in the states. I know that I have a lot to unlearn because it's so common to hear about holistic methods described in a dismissive tone (especially somatic ones.) I've been told by a PT at Kaiser that "sure i could point you in the direction of acupuncture, but it's just a placebo..." (then why would it be covered by insurance) i've asked 3 times and still haven't really been pointed in the right direction. I think it's easy to be skeptical if you ever have come across those advertisements that say things like "this acupuncture will make you lucky, rich and happy", it's as real as experts in Feng Shui.
And then there are my own experiences... like the time that i was the only person to show up to a yoga class at the Yand afterwards was 'reiki'd' and it was just... weird. Or the time I was told that people with ADHD are empaths (and can therefore read people's emotions/minds)
So please do share with me your stories of "real" energy work, not the stories where you know someone who can talk to animals. I want to know that science and magical things can and do exist, i.e. look at these brain scans that show that these ideal parent meditations totally made this person much less anxious in 6 months, and we tracked all types of people from all types of backgrounds over a 20 year span, and tons of control variables in place...and i want to know your philosophy of what care/health/wellness/a good death means.
I should add, that there are plenty of battles going on in the healthcare world as well. There's a chance that Bessel van der Kolk and Russell Barkley may have to duke it out one day if Barkley gets his way in the DSM-5.5 and there gets to be only 2 types of ADHD, one with Oppositional Defiant Disorder (aka Psychopaths) and ADD without ODD (90% of people with ADHD), or we may end up with Bessel van der Kolk's broader description where ADHD is not a necessary label because his research has lead him to the much simpler 'Developmental Trauma Disorder'. But alas, both will depend on convincing stalwart clinicians/psychologists who hold so much sway over the DSM. Which you'd hope would be easier to do than it actually is... check out the guy who tried to debunk Positive Psychology. van der Kolk's simplification would kindof match what one of my therapists says; that ADHD is an over-hyped as a term, it's all just different aspects of anxiety & depression and that meds should only be used in service of feeling feelings.
So this is where the debate about "Does ADHD exist" gets pretty complicated. In the end, I don't want to be arguing about semantics. I want to be able to parse out what helps me achieve my personal goals and what am I doing to just seem 'normal'... to me there couldn't be a bigger difference. Kindof like the difference between someone being spiritual and someone going to church to pray the gay away.
All of this also makes me think about how humans always keep categorizing things to its finest... made up... details. (see: hierarchy)
Hopefully i haven't freaked you out about how much work seems necessary to make sure you've 'got the upper hand' on all of the medical sides of ADHD, but i think you can't separate it from all of the cultural specificities of what makes it a disorder in the first place.
I do also think it'd be great if i can help some people out so that unlike me, you don't have to go through ALL of this.
Lastly on the medical front, according to my calculations, I'll be going from paying about $2,808 in healthcare costs up to $6,264 for the exact same care. So I've just found out that it would be cheapest to get the Kaiser Platinum Plan?!?, that just seems kindof shocking to me. So to keep things easier, I'm going to try to do less meds, less therapy and stick with the Silver Plan... you can check out the numbers below (or not, it's pretty intimidating), or you can ignore all of that and just think about what you may need to figure out if you lost your job/health insurance. Hint: None of it is fun or gratifying. Thankfully we're all different, so I can't say ANYTHING for sure! But what shouldn't change, is that your care/costs should not be based on how privileged you are to be able to understand, breakdown into smaller chunks, and wade through, all of this information...
I was going to wait until I got some feedback, I was also going to post this as 2 separate posts... but you know what? It's May Day, and I mention Kaiser Permanente folk that went on strike, so that seems good enough of a connection to me! (Plus i'm going to take the next two days off, so maybe read this in stages? I don't know, i'm impulsive and I didn't sleep at all last last night.)
So to begin, a "Full disclosure" was one of the pages from #ADHDGuideForByArtists version 1 (to keep me out of trouble):
I'm pretty sure I need some kind of disclosure because this was my favorite part of the rough draft of the 'Zine' (ADHD guide for/by Artists) that i think would probably keep it from wider publishing and distribution (because it's TOO useful):
 |
| I'm worried about transcribing everything that's on this page, so... if I find out it's totally legal to say all of this stuff, i'll definetely be updating this caption. |
Unfortunately, I am not going to transcribe this like i normally would for access reasons, because that would make it too easily... google-able? So like Ubu-Web and Library Genesis, let's just keep a good thing going by not talking about Fight Club.
 |
| Here's the digital version, is cleaner better? Did I just want to show it to you twice? I think I just wanted to show it to you twice, i'm really proud of the information on this page. I've met more than a few people that have avoided going to Kaiser for mental health reasons, so hopefully this convinces you to PLEASE GO! Read my tips! Your mental health is sooooo important even if these guys are flawed, there are WAYS around it. |
Ok, let's just keep the controversy rolling shall we?
This is what is really confusing me right now...
I've kept trying to get my doc to agree to change my meds for the last 6 months because
1. this is about to get really expensive without have a job (I even knew 6 months ago I would probably not have the same job/healthcare!)
2. i want to try to get off of meds to maybe just one that can deal with Sensitive Rejection Dysphoria (yeah yeah yeah, it's not in the DSM, but emotional de-regulation isn't attached to ADHD and developmental trauma disorder isn't being considered either, so it looks like a crap shoot at the moment, plus i've got the time/consistency to try things out that i didn't have before.)
3. i can't sleep well at all since he upped my dosage of Wellbutrin from 100mg to 200mg and i've been super irritable/agitated
 |
| If you look in the blurry background there's 3 total different meds I've now been put on. BUT before that all happened i felt like a genius, i said to my doc that i want to be able to go down from 10 mg to 5 mg of Adderall, so i was prescribed 15 mg in 5 mg doses that i then would be able to order as a 90-day supply. When i usually keep it at 5 mg, that means i've got like a 210 day supply, that cost me $30! So to compare, with my new healthcare, i'll definitely hit my $300 deductible for a 30 day supply... thats like... at least 10X more expensive? See more fun figures at the bottom if you want to know how I figured all that crap out... it took 2 whole days of lots of phone calls to get a straight answer of "how much more $$$ am i about to spend to get the same amount of care?" P.S. Do not get COBRA if you're not sure especially because no one will tell you that YOU CAN'T GET OUT OF IT even if you realize too late it's super expensive and therefore not the right plan for you since you'd qualify for Covered CA. Where is this very important advice supposed to go???? |
so what did my doc do? he increased my dosage of Wellbutrin (it's a stimulant, i just said that i'm having trouble sleeping???) and then he prescribed Seroquel, because I guess secondary and tertiary meds are a totally normal thing?
Tangent, this is my not-great analogy, but i made myself laugh, I feel like this is what I was just prescribed: "and lastly... take this dog to take care of the cats that we got to take care of the mice. Since you asked we originally starting using mice because of their useful side effect which is that their poo makes YOU immediately want to clean EVERY surface, so we've called it the "clean mouse program" and you end up with a super clean house. Also another added side affect of the dog program, it doubles as security, and will force you to be more disciplined. All of this will only change your lifestyle a little bit, so we're recommending starting with 2 cats, most people take up to 5 cats, but we'll cross that bridge if we have to. Would you like these cats from a breeder or these generic ones we just found outside for free? Let us know immediately if the cats are not working out for whatever reason, but... i mean, that's what the dogs are for."
(Note to self: Hedva's Letter to a Young Doctor is MUCH more appropriate in this context, this is just a neat little placeholder)
I'm STILL going to see the meds through, I'm still going to give it a chance over the next few weeks. I made sure to ask A TON of questions (what happens if i can't afford it anymore, what would 'going cold turkey' be like?) But it turns out (according to the Body Keeps the Score) these aren't the most important questions:
All related Excerpts From: Bessel van der Kolk MD. “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.”
“The drug revolution that started out with so much promise may in the end have done as much harm as good. The theory that mental illness is caused primarily by chemical imbalances in the brain that can be corrected by specific drugs has become broadly accepted, by the media and the public as well as by the medical profession.22 In many places drugs have displaced therapy and enabled patients to suppress their problems... ...After conducting numerous studies of medications for PTSD, I have come to realize that psychiatric medications have a serious downside, as they may deflect attention from dealing with the underlying issues. The brain-disease model takes control over people’s fate out of their own hands and puts doctors and insurance companies in charge of fixing their problems.
Over the past three decades psychiatric medications have become a mainstay in our culture, with dubious consequences. Consider the case of antidepressants. If they were indeed as effective as we have been led to believe, depression should by now have become a minor issue in our society. Instead, even as antidepressant use continues to increase, it has not made a dent in hospital admissions for depression. The number of people treated for depression has tripled over the past two decades, and one in ten Americans now take antidepressants.24”
“The new generation of antipsychotics, such as Abilify, Risperdal, Zyprexa, and Seroquel, are the top-selling drugs in the United States. In 2012 the public spent $1,526,228,000 on Abilify, more than on any other medication. Number three was Cymbalta, an antidepressant that sold well over a billion dollars’ worth of pills,25 even though it has never been shown to be superior to older antidepressants like Prozac, for which much cheaper generics are available.”
“All too often, however, drugs such as Abilify, Zyprexa, and Seroquel, are prescribed instead of teaching people the skills to deal with such distressing physical reactions. Of course, medications only blunt sensations and do nothing to resolve them or transform them from toxic agents into allies.”
“I sometimes give my patients low doses of benzodiazepines to use as needed, but not enough to take on a daily basis. They have to choose when to use up their precious supply, and I ask them to keep a diary of what was going on when they decided to take the pill. That gives us a chance to discuss the specific incidents that triggered them.”
“Mainstream trauma treatment has paid scant attention to helping terrified people to safely experience their sensations and emotions. Medications such as serotonin reuptake blockers, Respiridol and Seroquel increasingly have taken the place of helping people to deal with their sensory world.28 However, the most natural way that we humans calm down our distress is by being touched, hugged, and rocked.”
“Antipsychotic medications such as Risperdal, Abilify, or Seroquel can significantly dampen the emotional brain and thus make patients less skittish or enraged, but they also may interfere with being able to appreciate subtle signals of pleasure, danger, or satisfaction. They also cause weight gain, increase the chance of developing diabetes, and make patients physically inert, which is likely to further increase their sense of alienation. These drugs are widely used to treat abused children who are inappropriately diagnosed with bipolar disorder or mood dysregulation disorder. More than half a million children and adolescents in America are now taking antipsychotic drugs, which may calm them down but also interfere with learning age-appropriate skills and developing friendships with other children.60”
It really seems to me that when it comes to an ADHD diagnosis, there's this huge divide between WHEN someone was prescribed medications. Actually, medications aside, it really seems that those who were diagnosed as children (and maybe got an IEP or a 504 or... something) and those who were diagnosed later in life, like in their 30s, have such vastly different views of how to 'take care' of ADHD. For me personally, i'd never really looked into the label, and was actually put on Adderall but not explicitly told that it is for ADHD, weird huh? When i did finally look into #TimeBlindness something finally clicked and sooo much made depressing sense.
but for anyone who was diagnosed when they were younger and therefore put on meds as a child... yeah that is terrible. i feel like i am 'out' as someone with adhd, and people tend to seem meek about admitting that they have a doctor that put them on Adderall, but to a kid, that label is utterly life defining, and that's a travesty.
i'm not going to say that it's all a big pharma conspiracy, because i think most conspiracies are a slippery slope into ignorance, BUT i can imagine why there's such a huge pushback on meds, and the preference to run for 3 hours straight every day instead of meds, or to avoid all medications all together and just feel all of the feelings, despite how difficult it will be.
As one friend put it (not even related to meds actually) how do these kids have a sense of self to even know how to separate themselves from a diagnosis (or to know what they're supposed to be feeling?)
If a kid is rambunctious and an adult has the power to get a medication that can slow that tyke down, there is a power imbalance there that likely will not go unchecked because it could be prescribed by a teacher, by a guardian, by the state... unfortunately, the most avid non-prescription/medication folk are... Scientologists, so i'm somewhere in between.
What mostly bums me out is that my meds generally make me feel like I can be a bare-minimum level of productive, but that should definetely send some alarm bells, it did to me, and it seems like an obvious trap. Why? Because what i consider the bare-minimum level of productivity is INSANE (just look at this whole post), so i'll definitely be working on feeling feelings rather than helping... whoever gains the most from me working myself to death.
This is where i'm suppose to say "because Capitalism" right? Capitalism wants me to work to death, and before meds, I was just bad at Capitalism... i was always late, could only be goal oriented towards seemingly useless stuff that only interested me... the two ways i think i couldn't possibly get away from Capitalism were the impulsive purchases/money decisions, and the fact that if i use my hyperfocus for 'productivity' and for competitive gains over others, i am the problem.
So this is another big reason I want there to be a robust ADHD Guide that can show a bigger picture that can speak to this major gap between where medical information is right now, and all of the holistic stuff that isn't taken seriously.
Although even the holistic stuff rests somewhere between many ideas from many cultures/ways of doing somatic therapies, of how to make the unconscious conscious, of how its best to become self-aware but without any instructions (i.e. meditation, talk therapy), and it also includes... the cultural appropriation of that white Sikh guy in Beverly Hills with his super expensive prescriptions (and he doesn't take insurance btw).
I think we're all still waiting for the day that 'alternative medicine' is no longer allowed to be seen as subservient to the larger medical industry in the states. I know that I have a lot to unlearn because it's so common to hear about holistic methods described in a dismissive tone (especially somatic ones.) I've been told by a PT at Kaiser that "sure i could point you in the direction of acupuncture, but it's just a placebo..." (then why would it be covered by insurance) i've asked 3 times and still haven't really been pointed in the right direction. I think it's easy to be skeptical if you ever have come across those advertisements that say things like "this acupuncture will make you lucky, rich and happy", it's as real as experts in Feng Shui.
And then there are my own experiences... like the time that i was the only person to show up to a yoga class at the Yand afterwards was 'reiki'd' and it was just... weird. Or the time I was told that people with ADHD are empaths (and can therefore read people's emotions/minds)
So please do share with me your stories of "real" energy work, not the stories where you know someone who can talk to animals. I want to know that science and magical things can and do exist, i.e. look at these brain scans that show that these ideal parent meditations totally made this person much less anxious in 6 months, and we tracked all types of people from all types of backgrounds over a 20 year span, and tons of control variables in place...and i want to know your philosophy of what care/health/wellness/a good death means.
I should add, that there are plenty of battles going on in the healthcare world as well. There's a chance that Bessel van der Kolk and Russell Barkley may have to duke it out one day if Barkley gets his way in the DSM-5.5 and there gets to be only 2 types of ADHD, one with Oppositional Defiant Disorder (aka Psychopaths) and ADD without ODD (90% of people with ADHD), or we may end up with Bessel van der Kolk's broader description where ADHD is not a necessary label because his research has lead him to the much simpler 'Developmental Trauma Disorder'. But alas, both will depend on convincing stalwart clinicians/psychologists who hold so much sway over the DSM. Which you'd hope would be easier to do than it actually is... check out the guy who tried to debunk Positive Psychology. van der Kolk's simplification would kindof match what one of my therapists says; that ADHD is an over-hyped as a term, it's all just different aspects of anxiety & depression and that meds should only be used in service of feeling feelings.
So this is where the debate about "Does ADHD exist" gets pretty complicated. In the end, I don't want to be arguing about semantics. I want to be able to parse out what helps me achieve my personal goals and what am I doing to just seem 'normal'... to me there couldn't be a bigger difference. Kindof like the difference between someone being spiritual and someone going to church to pray the gay away.
All of this also makes me think about how humans always keep categorizing things to its finest... made up... details. (see: hierarchy)
Hopefully i haven't freaked you out about how much work seems necessary to make sure you've 'got the upper hand' on all of the medical sides of ADHD, but i think you can't separate it from all of the cultural specificities of what makes it a disorder in the first place.
I do also think it'd be great if i can help some people out so that unlike me, you don't have to go through ALL of this.
Lastly on the medical front, according to my calculations, I'll be going from paying about $2,808 in healthcare costs up to $6,264 for the exact same care. So I've just found out that it would be cheapest to get the Kaiser Platinum Plan?!?, that just seems kindof shocking to me. So to keep things easier, I'm going to try to do less meds, less therapy and stick with the Silver Plan... you can check out the numbers below (or not, it's pretty intimidating), or you can ignore all of that and just think about what you may need to figure out if you lost your job/health insurance. Hint: None of it is fun or gratifying. Thankfully we're all different, so I can't say ANYTHING for sure! But what shouldn't change, is that your care/costs should not be based on how privileged you are to be able to understand, breakdown into smaller chunks, and wade through, all of this information...
One of my friends said that 80% of what you pay into healthcare doesn't actually go to your care (citation NEEDED)If you'd like a copy of this excel spreadsheet to use as a calculator to plan for the whole year, hit me up, but you'll need to know how much your meds cost. Also mine includes seeing a therapist outside of what Kaiser offers so... i don't know if I'd ever meet my deductible with a super bill, but i know it's something to keep in mind. Ok, now i'm going to bed.
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