I have an Adderall prescription and even after navigating the whole troll situation I am now furiously trying to grade without it before all grades are due tomorrow, because even when you do everything right, there will still be random "shortages" (they're not allowed to make enough to go around to all of the legal prescriptions lmao)
I used to joke that in Mad Max I will either die (also terrible eyesight; now, MS too) but I could possibly become some sort of shaman; I’d be pretty good as one of the weird priest guys who follows around Lord Humungus or whoever.
I feel you. I dealt with debilitating gallbladder attacks for over a year and every single provider I saw was like "that sucks, take some tylenol, byeee" and I eventually diagnosed myself (thanks, internet) and then had to fight them to give me an ultrasound to confirm that I had like a bazillion gallstones. Thankfully they didn't jerk me around too much about getting the darn thing removed but I'm still mad that no one took me seriously enough to actually find out what was wrong.
yeah I got an IBS diagnosis :/ got put on a lot of elimination diets and stuff
I also did a bunch of internet hunting but somehow gallstones never turned up as an option. When after years of this I had to go to the emergency room and saw a doctor after idk… eight hours… they were like "oh it's your gallbladder" in like two seconds. Too late for my pancreas though.…
dude that sucks!! the medical system really does seem to think women are all whiny morons. and now here we are, stuck taking dumb pills that we hate (mine are mostly ox bile so during the apocalypse I'll have a open a cattle ranch next to your pig farm lol)
I refused headache medicine as a teen, too. I'd been dependent on artificial asthma control since preschool and didn't want to be "more dependent". And I wanted to be "tough".
My best option for leading a semi-normal life right now seems to be a mAb drug – one of those expensive immunomodulatory injections nobody pays for out of pocket. I started it last year, only to lose access when the doctor prescribing it mysteriously disappeared. When I couldn't get ahold of the doctor's office anymore, I showed up in person to find the office locked and dark, and mail piled waist-high visible through the sidelight window.
Between that mysterious disappearance and a change of coverage at the new year, I lost all continuity of care. Still putting the pieces back together...
A pulmonologist I saw once at our local BigHospCorp (for a perfunctory checkup to confirm that yeah, my problem was asthma, not some other lung ailment like cancer) became, quite by accident, the first doc who could step in and help me this year – though it wasn't his job, and he and I hope to never see each other again. His attitude was, it's 2025, ma'am, mAbs are the new standard of care for asthma like yours: just take the #$%& mAb without worrying about how to get by without it. Even though I'd just experienced loss of access forcing me to get by without, concluding that it just seems bad – but also not easily avoidable.
I would not be surprised if one day my current GP's office also disappears in a similar fashion though knowing them they probably would have just moved and never sent any mail or other form of notice that the phone number and address had changed. I'm glad you can get your mAb drug now, but that sounds terrible.
Laws in my state require orderly closure of medical practices, giving patients fair notice to retrieve their records – but although practices "can't" close without notice like my doctor's did, they absolutely can – they're just also in trouble with the law somehow if they do.
I got to do some civic duty speaking to detectives working for my then-insurer and the state board regulating professional licensing. Not sure it went anywhere, especially since I had no reason to report the office as having done anything clearly "bad" while it was open. My impression was of a talented doctor who was somewhat casual about paperwork, relying on office staff to pick up the slack – but wouldn't that describe many doctors?
The pulmonologist seemed kind and conscientious about helping me out of this jam – just, he specializes in critical illness, giving him some right to be annoyed when the system dumps non-critical patients like me in his lap. If the system works right, I *shouldn't* have to return to him for my foreseeable problems – which I suppose might mean he and I end up seeing way more of each other than either would like...
I feel so conflicted about this all the time because I am married to a doctor, and most of the women in my family are nurses or NPs, but as a sort of chronic patient now I am basically always at war with *someone* involved in the system (nurse on the phone, prescriber, insurance, whatever). So I hear plenty of frustration from the other side, but also experience what you're describing myself.
I try to soothe the cognitive dissonance by blaming everything on my insurance company (and to be fair, they cause me a lot of grief around their bizarre timetables for when all my rxs can be refilled).
I always try to treat whoever I'm dealing with as an innocent party. Like, "you probably don't know this, you angel you, but this incredibly annoying thing is happening…."
Oh man all this. I remember talking to a friend who was on a real intense variety of medications (meds for being quadriplegic + ADHD meds + anti-depressants) & somehow we got onto what he would do if he couldn't get them. At first it was all, "Well, I'd die." But eventually, really hating that answer, we got it turned into map-all-the-manufacturing-or-distribution-facilities and create-cross-country-drug-retrieval-plan. Maybe it's fantasy as coping mechanism, but I want to believe part of the post-apocalyptic landscape would be bands of people on quests for crucial medications (maybe leading near-sighted friend by the hand) (I am near-sighted friend).
Glad the doctors realized the power of the Notebook readership. We will shut u down
I have a kind of good cop/bad cop thing that I do with phone people that's the result of having worked both as a lawyer and as a customer service rep. I start out as polite as I can be, trying to communicate that I like the person, and then if they try to say they can't do something for me that I know they can do, I get very insistent and aggressive while communicating exactly what will go wrong (ideally for them) until they help me make some forward progress. Then, once they have helped me move the ball forward, I communicate as much gratitude as possible.
This is particularly effective when I can say things like, "If you don't transfer me to someone who can fix this, I will be forced to file a complaint against your company in federal court. Will that be acceptable to your manager?" but of course that's not always available.
On a separate note, I hope you're not in a position where you need opioids for some reason. As bad as a doctor's office can be about helping fill a prescription, they get really unpleasant if they can tell themselves that you're an opioid addict. Not fun at all.
Luckily, I don't need opioids these days, though if my pancreatitis becomes chronic pancreatitis that's a different story. But when I was in and out of the hospital I really, really needed them and it was really hard not to go crazy trying to get them. It is the only part of the experience that I think I find lastingly traumatic. And that was with a diagnosed condition everybody knows is exceptionally painful.
I'm watching "The Gilded Age" on HBO right now, and the way the Christine Baranski character treats people she considers "outside good society" reminds me of dealing with med folks who had decided that my wife was an opioid addict. That whole thing of "Treating you badly is what makes me a good person."
re: your first footnote. I think this fact, and the thriving black market of prescribed drugs, causes people to paradoxically become addicted to the very opiates (and other drugs) they were prevented from using through legal channels by insurance plans, laws, and other institutional barriers. It's unfortunate that opiates are so dang good at blocking pain (for instance) but are also super addictive and over prescribed because so much (and I mean a LOT) of suffering goes on in this country that doesn't have to otherwise.
I don't have a solution, except to blow the whole system up and start over.
Yeah—because of my experiences with pancreatitis, surgery, etc, I was often in extreme pain and not able to get pain relief easily (or at all). Doctors will tell you to take Tylenol while admitting it won't help. It has left me with a lot of mixed feelings about the way people talk about opiates and overprescription. I don't think the restrictive and suspicious way getting them operates now is good for doctors or patients. It definitely wasn't good for me.
But trying to get pain relief is maybe the only thing I have some sort of medical trauma around such that when I try to engage with the broader literature I still just can't do it, like mentally I'm just right back in the hospital trying to get a nurse to give me my next dose and she's like "no" lol. One day maybe.
I’m sorry. While it’s probably not much comfort, and you surely already know, the experience of women trying to get a fair shake from medical providers (ESPECIALLY pain management) is very bad pretty much across the board. I even have friends with female doctors who dismiss their concerns! Maybe blowing it up is the right move after all
I guess the answer would be to just keep the current glasses going as long we can. In adulthood the prescription usually becomes worse by fits and starts instead of giant leaps. Also avoid a mishap like the one that befell the Twilight Zone guy.
When we have to live off the grid (when AI is trying to kill us) there will be all kinds of things we won't have. Sometimes that will kill us all by itself. Medicine is fighting us already. My PCP says I don't need tests anymore for things that might kill me. I have reached the expendable age. So they say. I feel quite alive today. Quite.
i had a lump in my boob when i was 25 (was a strangely rigid cyst i still have that hurts me every day) and they said i was going to have to wait 3 months to get an ultrasound after waiting 2 weeks to see my ob. i said to this woman from central scheduling, “if your daughter were 25 and found a lump in her boob, is that what you would say to her” and she said “no” which led me to do this on 5 people i was transferred to until i got to a nurse who said “how did you get this number” before making up an appointment for me to make me hang up. i wasn’t even that worried about my boob i was just like, this is not going to be the way
this tactic was successful and i have since implemented it in other medical settings, including on my loved ones behalfs. it will not be the way
For any surgery or hospital related thing ask your elected representative to call the hospital, they do it no questions asked and all the hospital administration stuff that’s nobody’s fault just the system suddenly becomes flexible and accommodating. I did this for my dad and have recommended it to friends with uniformly good results (I assume it doesn’t work in non-hospital settings)
After two kafkaesque weeks in the hospital we tried this and the next day man in a very expensive suit showed up and asked us what our hospital administration and scheduling problems were and they all went away. Surprised nurses kept saying that we were getting the vip treatment (not having to wait five days for a prescribed walker to be brought up from the floor below us etc.), which made me feel a bit bad but my only regret is not calling sooner
not to get serious but obviously we need socialized healthcare … yet as someone with very minor brushes with medicine my next thought is … well if we can’t even get appointments now…
like one of my genie wishes would literally just to GET IN with a plastic surgeon for a CONSULTATION about scar revision, something i want to GIVE THEM MONEY for and i can’t make it happen. all bad etc… free medical school etc…
when I was writing my piece about chronic illness memoirs one of the funny things is that American memoirs tend to assume that under socialized medicine you'd get instant treatment by the best mysterious condition doctor and if you read an English one it's like "my GP told me it was in my head so I tried to get referred to a psychiatrist but the NHS judged me insufficiently insane to go to a psychiatrist so I got a sheet about CBT" lol. We do need socialized medicine but the system will always perform triage one way or another.
both sad and inspired by how much good advice is in the comments section?
new plan b is to start post apocalypse farm with notebook commenters for sure
I have an Adderall prescription and even after navigating the whole troll situation I am now furiously trying to grade without it before all grades are due tomorrow, because even when you do everything right, there will still be random "shortages" (they're not allowed to make enough to go around to all of the legal prescriptions lmao)
obviously synthesizing adderall will be top priority on our medical farm. unsure how but surely there's at least one chemist in this subscriber base.
new tradwife project just dropped
nose to tail pharmaceuticals
I used to joke that in Mad Max I will either die (also terrible eyesight; now, MS too) but I could possibly become some sort of shaman; I’d be pretty good as one of the weird priest guys who follows around Lord Humungus or whoever.
it's true, good work if you can get it
I feel you. I dealt with debilitating gallbladder attacks for over a year and every single provider I saw was like "that sucks, take some tylenol, byeee" and I eventually diagnosed myself (thanks, internet) and then had to fight them to give me an ultrasound to confirm that I had like a bazillion gallstones. Thankfully they didn't jerk me around too much about getting the darn thing removed but I'm still mad that no one took me seriously enough to actually find out what was wrong.
yeah I got an IBS diagnosis :/ got put on a lot of elimination diets and stuff
I also did a bunch of internet hunting but somehow gallstones never turned up as an option. When after years of this I had to go to the emergency room and saw a doctor after idk… eight hours… they were like "oh it's your gallbladder" in like two seconds. Too late for my pancreas though.…
dude that sucks!! the medical system really does seem to think women are all whiny morons. and now here we are, stuck taking dumb pills that we hate (mine are mostly ox bile so during the apocalypse I'll have a open a cattle ranch next to your pig farm lol)
I refused headache medicine as a teen, too. I'd been dependent on artificial asthma control since preschool and didn't want to be "more dependent". And I wanted to be "tough".
My best option for leading a semi-normal life right now seems to be a mAb drug – one of those expensive immunomodulatory injections nobody pays for out of pocket. I started it last year, only to lose access when the doctor prescribing it mysteriously disappeared. When I couldn't get ahold of the doctor's office anymore, I showed up in person to find the office locked and dark, and mail piled waist-high visible through the sidelight window.
Between that mysterious disappearance and a change of coverage at the new year, I lost all continuity of care. Still putting the pieces back together...
A pulmonologist I saw once at our local BigHospCorp (for a perfunctory checkup to confirm that yeah, my problem was asthma, not some other lung ailment like cancer) became, quite by accident, the first doc who could step in and help me this year – though it wasn't his job, and he and I hope to never see each other again. His attitude was, it's 2025, ma'am, mAbs are the new standard of care for asthma like yours: just take the #$%& mAb without worrying about how to get by without it. Even though I'd just experienced loss of access forcing me to get by without, concluding that it just seems bad – but also not easily avoidable.
I would not be surprised if one day my current GP's office also disappears in a similar fashion though knowing them they probably would have just moved and never sent any mail or other form of notice that the phone number and address had changed. I'm glad you can get your mAb drug now, but that sounds terrible.
Laws in my state require orderly closure of medical practices, giving patients fair notice to retrieve their records – but although practices "can't" close without notice like my doctor's did, they absolutely can – they're just also in trouble with the law somehow if they do.
I got to do some civic duty speaking to detectives working for my then-insurer and the state board regulating professional licensing. Not sure it went anywhere, especially since I had no reason to report the office as having done anything clearly "bad" while it was open. My impression was of a talented doctor who was somewhat casual about paperwork, relying on office staff to pick up the slack – but wouldn't that describe many doctors?
The pulmonologist seemed kind and conscientious about helping me out of this jam – just, he specializes in critical illness, giving him some right to be annoyed when the system dumps non-critical patients like me in his lap. If the system works right, I *shouldn't* have to return to him for my foreseeable problems – which I suppose might mean he and I end up seeing way more of each other than either would like...
I feel so conflicted about this all the time because I am married to a doctor, and most of the women in my family are nurses or NPs, but as a sort of chronic patient now I am basically always at war with *someone* involved in the system (nurse on the phone, prescriber, insurance, whatever). So I hear plenty of frustration from the other side, but also experience what you're describing myself.
I try to soothe the cognitive dissonance by blaming everything on my insurance company (and to be fair, they cause me a lot of grief around their bizarre timetables for when all my rxs can be refilled).
I always try to treat whoever I'm dealing with as an innocent party. Like, "you probably don't know this, you angel you, but this incredibly annoying thing is happening…."
Oh man all this. I remember talking to a friend who was on a real intense variety of medications (meds for being quadriplegic + ADHD meds + anti-depressants) & somehow we got onto what he would do if he couldn't get them. At first it was all, "Well, I'd die." But eventually, really hating that answer, we got it turned into map-all-the-manufacturing-or-distribution-facilities and create-cross-country-drug-retrieval-plan. Maybe it's fantasy as coping mechanism, but I want to believe part of the post-apocalyptic landscape would be bands of people on quests for crucial medications (maybe leading near-sighted friend by the hand) (I am near-sighted friend).
Glad the doctors realized the power of the Notebook readership. We will shut u down
The various people with pancreas troubles (diabetics, me) are all gonna have to go in on a pig farm together I guess.
Would read that book
I have a kind of good cop/bad cop thing that I do with phone people that's the result of having worked both as a lawyer and as a customer service rep. I start out as polite as I can be, trying to communicate that I like the person, and then if they try to say they can't do something for me that I know they can do, I get very insistent and aggressive while communicating exactly what will go wrong (ideally for them) until they help me make some forward progress. Then, once they have helped me move the ball forward, I communicate as much gratitude as possible.
This is particularly effective when I can say things like, "If you don't transfer me to someone who can fix this, I will be forced to file a complaint against your company in federal court. Will that be acceptable to your manager?" but of course that's not always available.
On a separate note, I hope you're not in a position where you need opioids for some reason. As bad as a doctor's office can be about helping fill a prescription, they get really unpleasant if they can tell themselves that you're an opioid addict. Not fun at all.
Luckily, I don't need opioids these days, though if my pancreatitis becomes chronic pancreatitis that's a different story. But when I was in and out of the hospital I really, really needed them and it was really hard not to go crazy trying to get them. It is the only part of the experience that I think I find lastingly traumatic. And that was with a diagnosed condition everybody knows is exceptionally painful.
I'm watching "The Gilded Age" on HBO right now, and the way the Christine Baranski character treats people she considers "outside good society" reminds me of dealing with med folks who had decided that my wife was an opioid addict. That whole thing of "Treating you badly is what makes me a good person."
re: your first footnote. I think this fact, and the thriving black market of prescribed drugs, causes people to paradoxically become addicted to the very opiates (and other drugs) they were prevented from using through legal channels by insurance plans, laws, and other institutional barriers. It's unfortunate that opiates are so dang good at blocking pain (for instance) but are also super addictive and over prescribed because so much (and I mean a LOT) of suffering goes on in this country that doesn't have to otherwise.
I don't have a solution, except to blow the whole system up and start over.
Yeah—because of my experiences with pancreatitis, surgery, etc, I was often in extreme pain and not able to get pain relief easily (or at all). Doctors will tell you to take Tylenol while admitting it won't help. It has left me with a lot of mixed feelings about the way people talk about opiates and overprescription. I don't think the restrictive and suspicious way getting them operates now is good for doctors or patients. It definitely wasn't good for me.
But trying to get pain relief is maybe the only thing I have some sort of medical trauma around such that when I try to engage with the broader literature I still just can't do it, like mentally I'm just right back in the hospital trying to get a nurse to give me my next dose and she's like "no" lol. One day maybe.
I’m sorry. While it’s probably not much comfort, and you surely already know, the experience of women trying to get a fair shake from medical providers (ESPECIALLY pain management) is very bad pretty much across the board. I even have friends with female doctors who dismiss their concerns! Maybe blowing it up is the right move after all
If it’s any consolation, I do not think bad eyesight is terminal
you haven't seen my prescription…
I guess the answer would be to just keep the current glasses going as long we can. In adulthood the prescription usually becomes worse by fits and starts instead of giant leaps. Also avoid a mishap like the one that befell the Twilight Zone guy.
Well, if the internal voice is ever pesky, know that there are many who would gladly speak to you at an optimal volume
When we have to live off the grid (when AI is trying to kill us) there will be all kinds of things we won't have. Sometimes that will kill us all by itself. Medicine is fighting us already. My PCP says I don't need tests anymore for things that might kill me. I have reached the expendable age. So they say. I feel quite alive today. Quite.
why are they like this!!
i had a lump in my boob when i was 25 (was a strangely rigid cyst i still have that hurts me every day) and they said i was going to have to wait 3 months to get an ultrasound after waiting 2 weeks to see my ob. i said to this woman from central scheduling, “if your daughter were 25 and found a lump in her boob, is that what you would say to her” and she said “no” which led me to do this on 5 people i was transferred to until i got to a nurse who said “how did you get this number” before making up an appointment for me to make me hang up. i wasn’t even that worried about my boob i was just like, this is not going to be the way
this tactic was successful and i have since implemented it in other medical settings, including on my loved ones behalfs. it will not be the way
going to use this
taking notes… i did abuse a personal connection to get my gallbladder surgery moved up lol
For any surgery or hospital related thing ask your elected representative to call the hospital, they do it no questions asked and all the hospital administration stuff that’s nobody’s fault just the system suddenly becomes flexible and accommodating. I did this for my dad and have recommended it to friends with uniformly good results (I assume it doesn’t work in non-hospital settings)
Elected representative ... local? state? federal? if it matters
I called my US representative.
wow I would never have thought of this… luckily I am not in any need of surgery these days but it's nice to know!!
After two kafkaesque weeks in the hospital we tried this and the next day man in a very expensive suit showed up and asked us what our hospital administration and scheduling problems were and they all went away. Surprised nurses kept saying that we were getting the vip treatment (not having to wait five days for a prescribed walker to be brought up from the floor below us etc.), which made me feel a bit bad but my only regret is not calling sooner
abuse and guilt 🎉
they basically wanted me to live with the sword of damocles over my head until april of the next year… i was not into that proposal
not to get serious but obviously we need socialized healthcare … yet as someone with very minor brushes with medicine my next thought is … well if we can’t even get appointments now…
like one of my genie wishes would literally just to GET IN with a plastic surgeon for a CONSULTATION about scar revision, something i want to GIVE THEM MONEY for and i can’t make it happen. all bad etc… free medical school etc…
when I was writing my piece about chronic illness memoirs one of the funny things is that American memoirs tend to assume that under socialized medicine you'd get instant treatment by the best mysterious condition doctor and if you read an English one it's like "my GP told me it was in my head so I tried to get referred to a psychiatrist but the NHS judged me insufficiently insane to go to a psychiatrist so I got a sheet about CBT" lol. We do need socialized medicine but the system will always perform triage one way or another.