#our medical system is fucked

[capricandoitall]

ADHD Tip:

I have a "missed Rx" bottle. Any time I forget to take my meds (and realize it), I put the pills I should have taken into this bottle. I treat these like they don't exist, which is why I don't leave them in the original bottle (yay for adhd object impermanence). This helps prompt me to get my refills on time.

THIS IS NOW MY EMERGENCY STOCKPILE of medication - particularly for my Adderrall.

If I don't/can't get my refill in time, if there's a shortage, if there's some kind of weather event or other emergency that prevents me from accessing a refill, etc, I have this. For controlled substances prescriptions, there's no other way to have a backup that I know of.

I occasionally swap the "forgotten" pills out 1:1 with new pills so they don't expire - I try to do it when I pick up my new prescription.

----------------

The rest of this became my personal manifesto regarding access to ADHD stimulant medications. Sorry, not sorry.

Anyone with ADHD who is lucky enough to be medicated knows that suddenly being unmedicated can be life destroying. And that's not an exaggeration - life-threatening accidents go up, risk of being fired for ADHD-related performance issues go up, interpersonal/telationship conflicts increase, etc, not to mention the increase in anxiety and depression for many while it feels like the very structure of our lives is decaying, and it's ALL OUR FAULT.

So, needless to say, med compliance is really important for stability. But getting med refills can be a chronic problem for people with ADHD.

Most ADHD medications are controlled substances, so we need a new script every month. For various regulatory, legal and ethical reasons, the onus is on the patient to initiate a refill with their doctor rather than the doctor's office being able to provide any kind of proactive support. In a lot of cases, we need an appointment every month, and at a minimum we have to remember to contact our prescriber to ask them for the refill. It's hard to remember to do that, especially to do it in advance so that they can submit the refill in time so we do not miss days. It's particularly hard to do it in advance vbecause we can't request the refill too soon because they're on guard to ensure we only have exactly the number of pills we need and not a single one more. Because we all must be abusing our medication.

In addition, pharmacists can only fill our new prescription the date they show we will run out based on the pick-up date and not a minute earlier. Sometimes a day in advance if we're lucky. Because, again, thw system assumes we must be abusing these medications.

To say the least, the timing of getting a refill is very exacting - for people who literally struggle with exactly this kind of challenge.

On top of all of this, there have been amphetamine supply shortages over the last few years. This is because the DEA restricts the amphetamine market for pharmaceutical companies, but does it in a way that leads to hoarding, exporting, and other market inefficiencies. The DEA will determine that there's enough of the ingredient available to meet patient demands, and won't give pharmaceutical companies additional allotments, even though the companies actually manufacturing the medications don't have the ingredient they need to meet demand. While this has improved since The Year We All Ran out of Pills, the issue is chronic and systemic so shortages still pop up occasionally.

Thus, even if we do everything perfectly to get the prescription, our pharmacy may not be able to fill it when it's time. This can often happen the day before we're going to run out (see above re timing of refills), often the evening before, in fact, because a large number of folks pick up their meds after work.

This then means people with executive dysfunction need to call around for a pharmacy with available pills, and we have to do it RIGHT AWAY because we are going to run out of pills today/tomorrow. Quite often, though, we have to do this while unmedicated, because in the moment we may not have time for the process (and it takes time - I've spent an hour on the phone with pharmacies before) or the pharmacies may not be open. And that assumes we're lucky enough to have access to an alternate pharmacy. Then, even if/when we can find a pharmacy that can help, there's another hurdle: pharmacies often can't transfer prescriptions for controlled substances (even from store to store within the same chain/company), so now we have to coordinate getting a NEW refill from our doctor (and don't get me started on the mess that is partial refills of controlled substances). Fingers crossed that it's our doctor's office's business hours (it never is).

Because forgeting tasks and difficulty with motivation due to executive disfunction are KEY SYMPTOMS of ADHD, this can trigger a (sometimes long) period of without medication, which can be dangerous (see above). AND SO, I have my baby emergency stockpile of pills.

There's not a lot of sympathy for the problems this causes for people with ADHD, which means getting support through this process is challenging. In fact, there's still a lot of stigma. I've personally been treated with suspicion and doubt by a pharmacy assistant while panic-crying because I couldn't get a refill. I've heard comments about how people trying to get refills act like drug addicts. I have thick skin and a supportive community, so those experiences didn't stop me from pushing for what i needed, but I know there are people who would give up after an encounter like that.

There is no political will to improve the system. In fact, there's more political will behind increasing restrictions on and further limiting access to stimulant medications. This comes from the narratives that 1) ADHD isn't real ("everyone forgets things" "everyone gets distracted" "it's trendy to have adhd" "stop making excuses"), 2) ADHD is overdiagnosed and/or overmedicated ("you should just try harder" "why are you so lazy" "have you tried using a planner" "o knew someone who..."), and 3) ADHD medications are being widely abused recreationally.

During the pandemic, the FDA started allowing doctors to prescribe controlled substances via telemedicine, which has increased access to treatment and improved patient ability to actually attend appointments (from decreased time commitment, lack of need for transportation, lack of need for much advance planning/remebering, etc). Add to this the increase in adult diagnoses, particularly for women who went undiagnosed/untreated as a result of systemic social issues when we were children, and the result is a general and not insignificant increase in patients being effectively treated for ADHD, including being prescribed ADHD medication. However, if you doubt ADHD or the effectiveness/importance of medication in treating ADHD to begin with, the increase in stimulant prescriptions is an indication of drug abuse, over diagnosis and over medication, NOT better access to care and decrease in missed diagnoses due to bias. Nevermind pretty solid science around the prevalence of untreated ADHD, medication being the single most effective and life-improving treatment for ADHD, and the very reasonable conclusion that telemedicine improved both access to healthcare as well as ADHD patient appointment attendance.

Which is to say, the FDA keeps pushing to revive the requirement for in person appointments in order to received prescriptions for controlled substances, like stimulants.

[biggest-gaudiest-patronuses]

*tries to organize my thoughts*

*remembers i'm not in school and therefore beholden to neither heaven nor hell nor any man's grading system*

*joyously shredding & tossing all my carefully arranged 3x5 mental notecards into the air like so much beige confetti. raising my arms in victory, cheering raucously until i accidentally inhale bits of homemade confetti*

(*coughing up itty bits of paper like a cat evicting a hairball with a firm understanding of tenants' rights*) wait wat happens next

[nikkalick]

I have chronic back pain, have for a while. It’s not so bad now that I had surgery, but I lived with it for years. I tried to go to a doctor for it, but they just said to lose weight, so I learned to live with the pain until one morning I couldn’t get up from bed. Couldn’t move without feeling like electricity was running up and down my back, burning my spine and leg from the inside.

This had me back in front of a doctor who (thankfully) listened and then for an entire year my insurance jerked me around requiring that I try different methods to manage the pain before finally agreeing to cover surgery.

In that year leading up to surgery something inside me broke. I couldn’t do the most basic tasks. Having to learn how to move my body in just the right way so that I wouldn’t lock up trying to wipe my own ass is one of my least favorite memories. Next to it is a tie between falling at my sister’s wedding because my leg gave out and being in so much pain I couldn’t sleep for days on end. I couldn’t sit, couldn’t drive, couldn’t bend or twist or even lay down without feeling like my nerves were on fire.

Work accommodated but I felt useless. I couldn’t lift inventory anymore. Couldn’t do a key part of my job that I (oddly) enjoyed doing. Commuting the hour to school twice a week was excruciating, but it was my first year of grad school. I had to push through. My professors were kind, they accommodated so that I could be as comfortable as possible in class. But I felt like a distraction, a nuisance, a bother. It was so hard to focus on lectures and homework when 90% of the input my brain was receiving was that of pain.

I grit my teeth and bore it, my mental health hit a new all time low, and I broke down in front my my mother more times than I can count. And I did this for a year because insurance refused to cover surgery unless I proved to them I needed it. I had to jump through their hoops and play by their rules to get the procedure I needed and that my care team knew I needed. I lost feeling in my leg and foot because they made me wait.

I will forever be grateful for the doctors who listened, for the physical therapist who advocated for me, for my mom who surprisingly became my rock during the whole ordeal. But my insurance company? They can go fuck themselves.

My pain before that year was bad, but not excruciating. My pain now? It’s minimal. Sometimes I still lock up and I’ll likely never have all of the sensation return to my left foot, but I’ll take the constant pins and needles over that year of pain any day. That said, had it gone on much longer I genuinely don’t know if I’d be here typing this.

Anyways…I guess what I’m saying is IF he did it, I get it. I really really get it.

[redfoxv]

If you are able to help. . .

As some of you may know I have been in chronic pain for the last 4 months due to a back injury. This has negatively impacted all aspects of my life and had been incredibly taxing both mentally and physically. I have been unable to work in recent weeks as the pain has gotten progressively worse.

We are finally scheduled for treatment however the tratment will cost $1965.40 with insurance (our health care system is broken) this is on top of the near $800 in prior medical costs we still need to pay off.

If you are able to help in any way my appreciation will be beyond measure. Maybe you like my content, maybe you just think im cool or, you are just a wonderful person who wants to help out a fellow in need. Regardless I greatly appreciate anything anyone can do to help, this includes rebloging to help get more eyes on my desperate plea.

My cash app link if you are able to help financially Cashapp

Thank you all so much words cannot express just how much I appreciate you all <3

[crippy-tangerine]

Pros of dissociating so much you cannot tell what’s going on: it is easier to ignore bodily disability symptoms! Yay! Get to pretend you are healed and abled!! Able-bodied and healthy!! Yay!!!! We are the epitome of health 🎉.

Cons of dissociating so much you cannot tell what’s going on: it is easier to ignore bodily disability symptoms…. (You are NOT healed, you are getting worse!) (your body is deteriorating and all you do is pretend it isn’t happening) (uh oh!!).

-> Our body is low-key falling apart and we are simply ignoring it. This is so healthy and good. We are so able bodied.!! (/most sarcastic tone ever… This whole post is in a sarcastic and frustrated tone! Cannot recommend ignoring your symptoms at all!!! We just… Cannot get the level of care we need right now, and it is taking its toll…).

[mylittleredgirl]

they recently had us switch to a new organization and calendar system at work (including some new software but mostly “this is how you should organize your entire life and you will know peace and never miss a task again!!”). at least half of the system is just a digital version of what i was already doing, and other parts of it are better, so i have no idea why it took me out at the knees. i had been riding a long sweet wave of low anxiety and now i'm trapped in a byzantine maze of highly doable tasks and shaking like a shelter dog in a crate—the exact opposite of what the system is supposed to do.

and the craziest part is that somehow... i can't seem to go back to my old system anymore either?? it's only been a few weeks! i used that for five years!! it’s like i have forgotten how to do the most basic parts of my job or make decisions. my brain turned into a stack of marbles and now they’re all over the floor.

like damn, apparently those crayola markers and glitter stickers were a load-bearing structural element of my professional competence. how do i explain that to regular people.

[sunmontuewrites]

I had 8 hours sleep last night. WHY AM I YAWNING???

[fossys]

Hey guess who remembered why we stopped being active in plural communities in the first place <-people are dicks

[butts-bouncing-on-the-beltway]

It remains absolutely infuriating to me that after 15 years of hormonal irregularities and periods that only came once or twice a year and a bunch of other weird digestive and allergy stuff that just never got solved, one day I went to the ER and had to get an entire organ removed and overnight all of that seems to have melted away.

Like. Apparently. Treating me meant removing that organ all along maybe? Or at least examining those organs more closely? And just??? No one ever did??? So for nearly 20 yrs I suffered and struggled and now suddenly it's all GONE.

[supercantaloupe]

truly detest how pcos tags/forums/etc are absolutely crawling with terfs

[nowendil]

i should be getting out of bed but i keep thinking about the cursed fact that I'm trapped to be seen either as a man or a woman by the general public for the rest of my stupid baka life

[pandorashearts]

doctor apt was shit but the ladies at the desk were cool and set us up for a better, nicer doctor next month so. we'll see how that goes but i can say i've never been so fucking flabbergasted in my life at the bullshit coming from a doctor's mouth and with the amount of medical trauma we have that is seriously saying something.

[pirates-and-ninja-lover]

fuck politics btw <3

[toytulini]

Disclaimer im just processing some thoughts im not cancelling the show

have almost thoughts about how i find the like....narrative on here that if you have chronic "zebra" conditions youd want a doctor like House and wouldnt sue for malpractice bc at least youd have a doctor that cares about whats wrong with you but lets take it one step further. so often he does NOT give a shit about the patient and actively endangers them frequently with his god damn heoric era of medicine approach? non zero amount of times he gets a diagnosis but it comes too late, or he gets a diagnosis after their first wrong 3 guesses of the episode shut down the patients kidneys and they either have to get a transplant or they are just, doomed due to other preexisting conditions etc? idk. i know ppl are almost certainly exaggerating and just letting off steam about the very real failures of our current medical systems and the ableism baked in and All That Shit. i just think its weird how ppl romanticize House who STILL, FREQUENTLY, MULTIPLE EPISODES will actively dismiss shit in the exact way that is a problem in our current system, especially when hes being Forced Against His Will To See Clinic Parients, he loves to be dismissive as fuck of symptoms and if he was a real doctor i think he'd be fucking 50/50 on cases he Notices Something To Dig Into vs cases he dismisses as an Anxious Hysterical Woman Who Wants Attention, the only reason he's Right so frequently in his snap judgements is cos it reinforces the narrative. its like a crime drama that has the mastermind serial killer masterfully using "loopholes" and lawyering up all sneaky and dodging Justice and if only our poor little cop protags were allowed to do A TEENY BIT of Justified Police Brutality, they could Save Lives!

and like sometimes in the show they will have a patient die despite his efforts to narratively punish him. not to mention, i think its been at least mildly brought up and glossed over how much they absolutely do not think about insurance costs for these ppl for the insane amount of tests that find nothing and Wrong Medications To Force A Diagnosis they use? i think it was brought up once in the episode following a day in the life of cuddy where she had to fight a lawsuit bc a guys insurance like didnt cover his thumb being reattached but chase reattached it anyway while in surgery cos it was The Right Thing To Do and the guy didnt have the money to cover it and the insurance wouldnt pay unless he sued the hospital or whatever. thats like the only time its come up. whereas like frequently the doctor I go to for osteopathic manipulation tries to check in with me and make sure im covered by insurance etc and that im not going to go broke or get buried in medical debt seeing her.

idk. just some Thoughts. not a defense of our current system and all the flaws it enables and enforces etc. his approach to medicine is really reminiscent to me of what I know of the Heroic Era Of Medicine which i dont...love? and hes framed on here as being an asshole but would kill for his patients to get them a diagnosis etc. but hes definitely extremely paternalistic to patients ? and despite some good clippable lines about ableism and being against eugenics, it honestly feels like his stance on that is kind of a toss up.

[thethingything]

pro tip: quickly end your host's 45 minute long panic attack by co-fronting and shoving a bunch of wholegrain mustard in your mouth as a distraction

[rayinpixels]

ya boy has kidney stones again lmao