This was agonizing to read - not only as a fellow ADHD'er, but as a mental health clinical practitioner. I go nuts on behalf of my patients when the provider system fails. Recently, one of my young so adult patients I've seen since she was 9 yrs old had her psychiatrist leave the university-affiliated practice and she wasn't notified. Refill time arrived & pharmacy he ad no authorizing doc. University clinic in was all deer in the headlights and hand wringing. And no meds forthcoming. They forgot to call Miss Susan, She Who Tolerates No Shit. Quick phone call with reminder about fed regs re: medical abandonment, etc etc etc. It's all good now but come ON people! Life is hard enough!
I am so lucky that my ADHD is also primarily addressed by my narcolepsy OTC caffeine. Color me lucky but still way too familiar with the beach at Dover and sitting atop my magic safe that I'm supposed to tow to Calais... 🤷
Rules may vary from state to state, but my psychiatrist (in California) is able to have 3 months of Adderall sent to me at a time via CVS Caremark. Just throwing that out there in case it’s helpful to anyone here!
My son went went through something very similar- his doc dropped him for missing an appointment and no one told him. We have the same Primary Care doc and she came through for him, probably because she sees my whole family. It was a nightmare for him and I felt completely helpless. This shit HAS to change.
This was staggeringly helpful to me as an outside observer. I'm so very sorry you go through that, it's outrageous and unfair! But thank you, thank you SO much for speaking about it so thoroughly and frankly. You are absolutely making a difference with this.
I am 69, diagnosed in 2010 after taking what should have been a brief course of Reglan to counteract the GI effects of taking opiates after a painful surgery. Reglan is generally well tolerated, taken by many chronically - but has a black box warning regarding psychiatric side effects. I got them - suicidal ideation, panic and anxiety attacks, aphasia, mental fogginess - and it didn’t stop (though some of it got less bad) after ceasing the Reglan. I was eventually put on Adderall, along with Ativan. Over the years, the Ativan was discontinued (apparently bad for older people), tried other ADD meds, and ended up back on Adderall plus an antidepressant that has anxiolytic properties. I’m stable(ish).
I may have had ADD and/or been slightly on the spectrum all along - my daughter thinks so (but then again, she thinks almost everyone is, so ...). But clearly the Reglan switched my brain into a different place.
I am a fairly high-functioning person. I have a PhD in molecular biology, and I’m an attorney (biotech patent law). My pro bono work has been helping people being denied coverage for their medical conditions (usually bariatric surgery) file appeals and most of the time win. I have a high threshold for and methods for overcoming obstructive institutional shenanigans.
But keeping a steady supply of Adderall on hand is damned near impossible. Doled out 30 days at a time (and not taking into account the fact that there are months with 31 days), getting the monthly shrink appointments on time, AND getting the shrink to timely send in the script, is a chore that I regularly fail to accomplish without strum und drang. Add to that being an RVer who tries to take extended trips out of state, and the stupid rules for getting a vacation override (and my AZ doc cannot write scripts in CA), and I spend literally HOURS each month getting my meds straightened out.
Why do they think I would try to abuse Adderall, at my age in particular??
Now add to that that I manage getting my husband’s meds, including one that is horrifically expensive and we get through a Patient Assistance Plan, plus Medicare -paid continuous glucose monitoring sensors that last 14 days and are doled out 2 at a time by a service that takes a variable number of days to ship across country, and it’s a good thing I’m barely working anymore.
Oof. I was diagnosed with ADHD when I was 6 and I can relate to these posts, especially the strict rules about filling prescriptions for controlled substances. It nearly ruined my trip to Ireland back in October. But for me my struggle is time management and staying focused on one task more than anything else. Of course I procrastinate as well but only in certain areas.
Your Obstructo tryptich alllows a very vivid view into your struggles both personally and within the healthcare system.
That being said, some of what you describe I recognized in myself and could not articulate so well.
I picked up a few useful phrases from your stories and being able to make myself better understood by using some of your words is a gift. Thank you for that.
Thank you for sharing. I had no idea that people with ADHD had to go through this prescription refill insanity. I’m sorry you and others have to go through this.
Our health care system sucks for reasons too numerous to list here. As a person with diabetes I empathize with your frustration with the hoops one must jump through to get what you know you need to function/stay well
I went to my PCP today to ask to get back on low dose XR Adderall we chatted and had a great time, I left, I had forgotten to ask.
So now here I sit knowing it's long past time for me to be medicated again. I can't sleep when I'm at this point 15 mins here and there. I'm all buzzy inside like a ate a whole hive.
I called the office later and getting him my medical therapist's notes and such (she doesn't prescribe) but I just sat in his office talking. I couldn't remember why I was there.
Blankly stares at doing anything possible to avoid helping myself. Sigh*
I went to my PCP today to ask to get back on low dose XR Adderall we chatted and had a great time, I left, I had forgotten to ask.
So now here I sit knowing it's long past time for me to be medicated again. I can't sleep when I'm at this point 15 mins here and there. I'm all buzzy inside like a ate a whole hive.
I called the office later and getting him my medical therapist's notes and such (she doesn't prescribe) but I just sat in his office talking. I couldn't remember why I was there.
Blankly stares at doing anything possible to avoid helping myself. Sigh*
Wow, I didn't realize how not having medications affected ADHD sufferers. Also the more I read about your health system and how it sucks, the more I'm glad ours is govt funded along the lines of the NHS
Its not perfect but shitloads (and then some) betterthan the US system.
I went off my meds for 6 years bc of a similar situation. It sucked so much. I finally found a local NP (who also does telemedicine appointments, so at least I don’t have to spend a day every month sitting in a waiting room to pay 70 dollars for a piece of paper--I just pay it to sit at my computer with her, and once I went back on meds I couldn’t believe how much things had been really bad without them. I live in fear that she will retire and I’ll have to start the entire cycle over again.
I got diagnosed in May. I’m in my late fifties. It explains everything. My entire life. At first I was immensely grateful, then confused cause there’s not a lot of help for it. I’m in the anger part now, for a lot of the same reasons you’re talking about. I’ve been waiting since June for a provider to do something, I’m not even sure what. Give me a test? I got referred to a place for medication management cause the two “normal” meds don’t work for me. Adderall makes me lethargic so I just want to sleep and Ritalin makes me so high I don’t even know who I am. Twice a day 😂 Timed release insanely high can’t speak. Anyway the doc who was supposed to help with meds didn’t believe my diagnosis, without even really talking to me. She was on a tv. I had to go to a building and sit in a room and talk to a person like a zoom meeting. She won’t do anything til I talk to this other guy. Yesterday his office called and said nah he doesn’t wanna do that anymore.
Anyway, there’s not a lot of resources for this condition that affects so many. Everything I google just gives me a bunch of info on symptoms and I want info on how to deal with those symptoms. I’m glad you got your meds and you can write again. I am also a writer and this neurodivergence really wreaks havoc with that.
I don't know why it did not occur to me that I might have ADD since all 4 of my biological children HAVE ADD. I identified with most of what you said in Obstructo II, went to my therapist and he asked questions and then said yep...you just figured out how to live with it. The truth is that is has been exhausting to live with it. I had 2 jobs, single mom to 4 kids and tons of activities for all of us so I have just pushed myself for years. I now have less work and I get my work done and meet my deadlines but geez, getting on the bike is difficult. This is what I related to most. I am now trying to use caffeine to get my critical work done in the mornings. I seem to always have a nagging guilt if I am not working flat out all day as I have done in the past. I need to explore my options but I feel much better knowing. Thanks for your candid sharing.
I am one of those grateful and amazed people who learned something new from your ADHD self-disclosures. I am now convinced my husband of 22 years has ADHD that has been undiagnosed all his life. This has caused a lot of pain over the years, but I feel more hopeful now!
This was agonizing to read - not only as a fellow ADHD'er, but as a mental health clinical practitioner. I go nuts on behalf of my patients when the provider system fails. Recently, one of my young so adult patients I've seen since she was 9 yrs old had her psychiatrist leave the university-affiliated practice and she wasn't notified. Refill time arrived & pharmacy he ad no authorizing doc. University clinic in was all deer in the headlights and hand wringing. And no meds forthcoming. They forgot to call Miss Susan, She Who Tolerates No Shit. Quick phone call with reminder about fed regs re: medical abandonment, etc etc etc. It's all good now but come ON people! Life is hard enough!
I am so lucky that my ADHD is also primarily addressed by my narcolepsy OTC caffeine. Color me lucky but still way too familiar with the beach at Dover and sitting atop my magic safe that I'm supposed to tow to Calais... 🤷
Rules may vary from state to state, but my psychiatrist (in California) is able to have 3 months of Adderall sent to me at a time via CVS Caremark. Just throwing that out there in case it’s helpful to anyone here!
My son went went through something very similar- his doc dropped him for missing an appointment and no one told him. We have the same Primary Care doc and she came through for him, probably because she sees my whole family. It was a nightmare for him and I felt completely helpless. This shit HAS to change.
Glad it worked out for you, Hoarse.
This was staggeringly helpful to me as an outside observer. I'm so very sorry you go through that, it's outrageous and unfair! But thank you, thank you SO much for speaking about it so thoroughly and frankly. You are absolutely making a difference with this.
I am 69, diagnosed in 2010 after taking what should have been a brief course of Reglan to counteract the GI effects of taking opiates after a painful surgery. Reglan is generally well tolerated, taken by many chronically - but has a black box warning regarding psychiatric side effects. I got them - suicidal ideation, panic and anxiety attacks, aphasia, mental fogginess - and it didn’t stop (though some of it got less bad) after ceasing the Reglan. I was eventually put on Adderall, along with Ativan. Over the years, the Ativan was discontinued (apparently bad for older people), tried other ADD meds, and ended up back on Adderall plus an antidepressant that has anxiolytic properties. I’m stable(ish).
I may have had ADD and/or been slightly on the spectrum all along - my daughter thinks so (but then again, she thinks almost everyone is, so ...). But clearly the Reglan switched my brain into a different place.
I am a fairly high-functioning person. I have a PhD in molecular biology, and I’m an attorney (biotech patent law). My pro bono work has been helping people being denied coverage for their medical conditions (usually bariatric surgery) file appeals and most of the time win. I have a high threshold for and methods for overcoming obstructive institutional shenanigans.
But keeping a steady supply of Adderall on hand is damned near impossible. Doled out 30 days at a time (and not taking into account the fact that there are months with 31 days), getting the monthly shrink appointments on time, AND getting the shrink to timely send in the script, is a chore that I regularly fail to accomplish without strum und drang. Add to that being an RVer who tries to take extended trips out of state, and the stupid rules for getting a vacation override (and my AZ doc cannot write scripts in CA), and I spend literally HOURS each month getting my meds straightened out.
Why do they think I would try to abuse Adderall, at my age in particular??
Now add to that that I manage getting my husband’s meds, including one that is horrifically expensive and we get through a Patient Assistance Plan, plus Medicare -paid continuous glucose monitoring sensors that last 14 days and are doled out 2 at a time by a service that takes a variable number of days to ship across country, and it’s a good thing I’m barely working anymore.
Oof. I was diagnosed with ADHD when I was 6 and I can relate to these posts, especially the strict rules about filling prescriptions for controlled substances. It nearly ruined my trip to Ireland back in October. But for me my struggle is time management and staying focused on one task more than anything else. Of course I procrastinate as well but only in certain areas.
Your Obstructo tryptich alllows a very vivid view into your struggles both personally and within the healthcare system.
That being said, some of what you describe I recognized in myself and could not articulate so well.
I picked up a few useful phrases from your stories and being able to make myself better understood by using some of your words is a gift. Thank you for that.
Thank you for sharing. I had no idea that people with ADHD had to go through this prescription refill insanity. I’m sorry you and others have to go through this.
Our health care system sucks for reasons too numerous to list here. As a person with diabetes I empathize with your frustration with the hoops one must jump through to get what you know you need to function/stay well
Ooohhhh Mike.
I went to my PCP today to ask to get back on low dose XR Adderall we chatted and had a great time, I left, I had forgotten to ask.
So now here I sit knowing it's long past time for me to be medicated again. I can't sleep when I'm at this point 15 mins here and there. I'm all buzzy inside like a ate a whole hive.
I called the office later and getting him my medical therapist's notes and such (she doesn't prescribe) but I just sat in his office talking. I couldn't remember why I was there.
Blankly stares at doing anything possible to avoid helping myself. Sigh*
Ooohhhh Mike.
I went to my PCP today to ask to get back on low dose XR Adderall we chatted and had a great time, I left, I had forgotten to ask.
So now here I sit knowing it's long past time for me to be medicated again. I can't sleep when I'm at this point 15 mins here and there. I'm all buzzy inside like a ate a whole hive.
I called the office later and getting him my medical therapist's notes and such (she doesn't prescribe) but I just sat in his office talking. I couldn't remember why I was there.
Blankly stares at doing anything possible to avoid helping myself. Sigh*
Wow, I didn't realize how not having medications affected ADHD sufferers. Also the more I read about your health system and how it sucks, the more I'm glad ours is govt funded along the lines of the NHS
Its not perfect but shitloads (and then some) betterthan the US system.
Anyway, im glad you're doingbetter. .
I went off my meds for 6 years bc of a similar situation. It sucked so much. I finally found a local NP (who also does telemedicine appointments, so at least I don’t have to spend a day every month sitting in a waiting room to pay 70 dollars for a piece of paper--I just pay it to sit at my computer with her, and once I went back on meds I couldn’t believe how much things had been really bad without them. I live in fear that she will retire and I’ll have to start the entire cycle over again.
I got diagnosed in May. I’m in my late fifties. It explains everything. My entire life. At first I was immensely grateful, then confused cause there’s not a lot of help for it. I’m in the anger part now, for a lot of the same reasons you’re talking about. I’ve been waiting since June for a provider to do something, I’m not even sure what. Give me a test? I got referred to a place for medication management cause the two “normal” meds don’t work for me. Adderall makes me lethargic so I just want to sleep and Ritalin makes me so high I don’t even know who I am. Twice a day 😂 Timed release insanely high can’t speak. Anyway the doc who was supposed to help with meds didn’t believe my diagnosis, without even really talking to me. She was on a tv. I had to go to a building and sit in a room and talk to a person like a zoom meeting. She won’t do anything til I talk to this other guy. Yesterday his office called and said nah he doesn’t wanna do that anymore.
Anyway, there’s not a lot of resources for this condition that affects so many. Everything I google just gives me a bunch of info on symptoms and I want info on how to deal with those symptoms. I’m glad you got your meds and you can write again. I am also a writer and this neurodivergence really wreaks havoc with that.
I don't know why it did not occur to me that I might have ADD since all 4 of my biological children HAVE ADD. I identified with most of what you said in Obstructo II, went to my therapist and he asked questions and then said yep...you just figured out how to live with it. The truth is that is has been exhausting to live with it. I had 2 jobs, single mom to 4 kids and tons of activities for all of us so I have just pushed myself for years. I now have less work and I get my work done and meet my deadlines but geez, getting on the bike is difficult. This is what I related to most. I am now trying to use caffeine to get my critical work done in the mornings. I seem to always have a nagging guilt if I am not working flat out all day as I have done in the past. I need to explore my options but I feel much better knowing. Thanks for your candid sharing.
That’s the irony... when you have less going on, it gets harder. Being overbooked creates an urgency that kinda works in a perverse way.
I am one of those grateful and amazed people who learned something new from your ADHD self-disclosures. I am now convinced my husband of 22 years has ADHD that has been undiagnosed all his life. This has caused a lot of pain over the years, but I feel more hopeful now!