#medical insurance companies suck

[wellplacedbanana]

I’ve seen a few posts recently talking about how important it is for us to share our tips for dealing chronic illness with each other, and I’ve realized that as a freakishly avid community enthusiast, I’ve been falling down on the job. So, I present

Wellplacedbanana’s Ridiculously Long List of Tips for All Things Chronic Illness (Curated Over 8+ Years):

Infusion Centers

Headed to an infusion center to get that sweet sweet (expensive as hell) live-saving medication pumped directly into your veins? Here’s what I do.

Bring headphones or earplugs. Most infusion centers try to maintain a semblance of quiet for the patients, but it can get loud fast—beeping IVs, pulse ox monitors, loud families, codes. Some infusion centers do pods of multiple people and some do individual bays, so this can affect noise levels.

Drink lots of water before if you have to get an IV placed. Don’t worry too much about bringing a water bottle because they’ll give you one when you get there. (Of course, if you have something like POTS and need more intense hydration, bring the damn water bottle.) If you’re not hydrated and they can’t find a vein, they’ll call in the ultrasound tech, and they’ll bring the longest IV needle you’ve ever seen. It hurts. Drink water.

Bring a book or your Switch or something else to entertain you, but don’t expect to actually do it. I tried bringing papers to edit the first time because I was like “Oh it’s an hour and a half of uninterrupted free time. I can get so much done!” I was wrong. The nurses are constantly checking in for vitals, the unit can be loud, and I spent the whole time trying not to vomit everywhere. Different infusions will have different side affects. Knowing what yours might be will help you plan for what you want to bring. Knowing how long your infusion will be can also help. Most infusion centers have to keep you 20-45 minutes after your first dose of a new medication to make sure you don’t have an allergic reaction, so factor that into your time too.

If you’re in a pod with other patients who’re friendly and if you feel up to it, don’t be afraid to talk with them. Lots of them are lonely, bored, interested in other people, etc. I met an elderly Thai lady one time who had been there for three hours and would be there for another four AFTER I left. We talked about her husband and her kids, and she listened to me talk about punctuation as style in prose. It made me feel less alone in the medical system and helped distract me from the nausea.

Conversely, if you don’t want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Don’t worry about staying lucid. Your job is to get the infusion and do what’s best for you.

You can bring snacks if you want, but most units/centers will have something to munch on or can order you something from the cafeteria if you’re at a hospital. Also the medication and the smells in the unit always make me nauseous, so it’s kind of a waste for me to bother pulling together food before I leave. You can always eat before or plan to get something on the way back. Going through a drive thru to get something with protein is my go to.

If possible, schedule your next appointment while you’re there. I have to go every three months, so I schedule the next one while I’m there, and then I never have to make any fucking phone calls. Phone calls are the worst.

My last and most important tip: ask the nurses when you need something. Blankets, water, snacks, pain meds, the lights turned off. If they can’t do it, they’ll tell you. They’d rather have you ask and have to say no, then you be uncomfortable. Don’t suffer if there might be a solution.

Dealing with Shitty Doctors

There are shitty doctors everywhere, in every specialty and every hospital system. It sucks, and you can do your best to avoid them, but most chronically ill patients will have to put up with one at some point. Here are my suggestions:

If they’re refusing to acknowledge one of your symptoms is a problem (won’t order tests, won’t refer you out, won’t ask any questions), tell them it’s affect your Activities of Daily Living. ADLs are one of the ways doctors measure severity of symptoms and quality of life. ADLs are the absolutely essential things you need to do to be a functioning human: eat, shower, get dressed, brush your teeth. ADLs are a trigger word for most doctors. Physical therapists and occupational therapists were created specifically to help patients achieve their ADLs. If you’re having severe joint paint, say it’s affecting you’re ability to shower and dress in the morning. If you have intense fatigue, say you’re too tired all the time to cook food to eat or even brush your teeth before bed. Tell them your symptoms are affecting your quality of life and your ability to function daily. This won’t always work, but it’s a good starting place. (A side note: if you have have to submit an insurance appeal for something that was denied, citing ADLs as a reason to receive the treatment/medical equipment/doctors visit, will often spur them into action. Sometimes, it’ll just make them ask more questions, but questions are better than flat out denial. This was a very helpful tactic when I was trying to get my manual wheelchair approved. I told them I was unable to complete my ADLs and it was affecting my quality of life, and they eventually came around. It’s also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializing—those aren’t included in ADLs, and insurance especially will laugh in your face if you try to say you need medical equipment for something like that.)

Lots of doctors, consciously or unconsciously, will judge how you’re actually feeling by your mood in an appointment. I had a pediatric neurologist who couldn’t be convinced that my pain was at an 8 because I would laugh with my mom in the waiting room. Eight months in, I started getting real quiet, not talking, crying when he talked, all that shit, and he was so fucking flummoxed. He was like “what changed?? Are you depressed??” And I had to remind him that I was thirteen with a severe shoulder inure that hurt every time I breathed. Doctors will judge you based on how you look and how you present. It’s horrible, but it’s true. Present to them in the way that represents what they’d expect to see for your symptoms.

Whatever you do, don’t say anything (or send any snappy messages) that might be considered aggressive until you are absolutely, 100% positive you will never ever have to see them again. I’ve had a few doctors that said ridiculously horrible things to me. It’s tempting to send them a message about how shitty they’ve been or how much they’ve hurt you, but it won’t help. Shitty doctors have fragile egos and they don’t like to be challenged. They won’t take this well, and they’ll mark you as attention seeking, emotional, mentally unstable—you name it. When your other doctors call to ask questions about symptoms, etc, they’ll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasn’t seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that aren’t afraid to advocate for themselves, and this is one of the least immoral ways they do it.

Remember that you don’t owe your doctors anything (except basic human decency). If they ask you to do something and you can’t or don’t want to, don’t. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didn’t. Sometimes, your doctors won’t move on to further treatment or tests until you try it, but most of the time you can say, “that’s not something I’m able to do right now. Let’s explore further options,” and they’ll move on.

Remember that learning to advocate for yourself takes years of practice. Just do your best, and try not to blame yourself for the ways you get mistreated. Therapy is the best investment I’ve ever made for this. It’s helped me learn how to advocate and how to process medical trauma.

Medication

For gods sake, take the as needed medication when you have a migraine or if you’re nauseous. Don’t punish yourself.

This might seem like a no brainer, but if you’re traveling and you’re going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and you’ll have to pick Levothyroxine out of your socks.

If a medication gives you icky side effects, tell your doctor and ask if there’s something that doesn’t do that. For me personally, it’s hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesn’t hurt to ask. Sometimes new medications come out or they dig up old ones.

Some medications come in dissolvable tablets or suppositories. They’re not fun, but if you have trouble swallowing pills, this is a good way to go. Again, communicate with your doctor about these things. I know that there are Scopolamine patches for nausea too. I’ve never used them before, but it might be worth looking into if need easy nausea relief.

All Things Wheelchair

Man, wheelchairs suck, but they’re also amazing. If you find yourself using one, you’ll encounter a steep learning curve.

If you’re not super buff when you first start, it’ll seem impossible to go up even a slight incline. Your arms will get stronger the more you move around, but it might take time. I eventually bit the bullet and started doing personal training. I’m lucky that I can afford it, and I know it’s not an option for everyone, but if you can, find a trainer who won’t saying anything shitty and who’s willing to accommodate. I worked with a queer-owned gym to find someone I was comfortable with. We do upper body strength training, and it gives me a chance to move my body more often. I still can’t go up big hills, but I feel infinitely more mobile. Give yourself time to adjust to the new strain on your body, even if you don’t do training for it. You’ll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, you’re not wheeling correctly, and you should ask your doctor for a referral to PT or OT. Oh and your hands will be fucked for the first few weeks. I bought special wheelchair gloves to try to combat this, but it just made it harder for me to maneuver. Now I only use the gloves if it’s cold, if I’m going down hills, or in the rain/snow. (But seriously, if you’re going down steep hills, use traction gloves.)

Learn to pop a wheelie as soon as possible. It’s such a helpful skill. If you get good enough, you’ll be able to get up over single steps and traverse shitty pavement.

If your wheelchair has a cushion, then it has a cushion cover. Wash it.

Time for the grossest part: cutting hair out of your caster wheels. I hate this. I hate it so much. It’s fucking disgusting, but you have to do it. It’ll fuck up your wheels and make it harder to maneuver. Also it’s just gross to have all that nasty hair hanging out by your feet. Get yourself a long pair of thin scissors and cut all that hair out every week or every two weeks. If you don’t have long hair or live with people who have long hair, then you might be able to wait longer. You should also sanitize your hand rims while you’re at it. Hand sanitizer or Clorox wipes are great for this.

You’ll notice that it’s fucking impossible to carry shopping baskets or suitcases if you use a manual chair. Some people try to balance them on their laps or wedge them onto their footplates, but it’s pretty precarious. I got these weird peg things that attach to the frame. You can place a basket or your bag on it and still keep your hands free. Here’s the link for the ones I got, but it depends on your make and model, so do some research and call some different companies before buying anything. Also, make sure to measure the distance between the two sides of your frame to make sure a basket will be able to balance on the two pegs. Your frame might be too wide for this. Mine is, but I bought a special basket to take to the store that’s wide enough to reach across.

Lots of people will offer to push you. Some won’t even offer; they’ll just grab on and take you in whatever direction. It’s insanely invasive and dehumanizing. Don’t be afraid to put on your breaks if someone does this. I can stand and take small steps, so sometime I just get up and stare at them. You can also buy covers for your handles that have spikes so people can’t grab them. I know some wheelchair users who like it when people offer to push them. That’s good too! Take the help if you want it. Just remember to prioritize your safety and comfort. I had a big debate with another disabled person about whether it was infantilizing for someone to offer to hold open the door for us. I’m firmly on the side that they can offer, and I can say no, and they can listen, and then we can both appreciate the moment of shared humanity between us. They did not agree. Disabled people fight and disagree all the time because we’re not all carbon copies of each other. That’s okay! Just be respectful.

Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesn’t like to pay for them because it’s about 3-12k, depending on the specifications and add-ons. But it’s also been the most liberating thing I’ve done since getting my mobility stripped from me. I’m not sure how it works for everyone, but I got a referral from my doctor to a custom wheelchair company. From there, they took measurements, discussed needs, and showed me different models. It’s going to be really really difficult to know what you want the first time. There’s a lot of different brands and customizations, so do your research and talk in depth with whoever’s making your chair. Ultra lite rigid frames are my favorite because they’re usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames don’t fold together in the middle like classic manual wheelchairs that you might find at a hospital or get at a rental company. They can be difficult to fit in the backseat of a car or in some trunks, so make sure to measure any cars you ride in regularly. Some people prefer to have tilted wheels so they can turn easier. Some people don’t want anything to do with that. Depending on your mobility and the people in your life, you might choose not to add push handles to your chair. I added some to mine because I often get dizzy, and it’s helpful to have handles in case I need someone to push me out of the crosswalk or into the shade. People who are highly independent and extremely strong might not want push handles because they won’t need help up steep hills. I like my handles a lot; however, my chair back is shorter than a standard wheelchair because it helps increase range of motion when I’m wheeling, so my push handles are lower than normal, and anyone who wants to push me has to hunch a bit to reach. Again, do your research and talk to your rep before making final decisions. Some companies will let you test out the chairs they have on hand to see what you like. It’s important to work with a wheelchair company you really like because you’re literally putting you life in their hands. I’ve had better luck with smaller, locally-owned companies, but you can’t always get referrals there, and not every town has them. Here’s my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; I’ve had really good experiences with them. But most of the time, its impossible to get ahold of anyone, their hours are few and random, and their customer service reps are rude. But! After you’ve completed your order form—gotten measurements and found customizations—they’ll submit it to insurance. This is the tricky part. I went through four appeals, before I got mine approved. Luckily, I had insurance through my mom’s job, and after the last appeal, her company told the insurance that they had to pay for it. This won’t be the case with everyone. Be diligent with your appeals. Have your doctors write specific, clear letters about why you need it, including information about all the customizations and add-ons. It’s likely that they’ll only pay for the base chair, and you’ll have to pay out of pocket for any extra things. Another note: most insurance companies will only pay for a new chair once every five years (if they approve the first one at all), so be sure that the chair you pick out will work for you for at least the next five and a half years.

I had an advisor in college tell me something devastating once: there is no AAA for wheelchairs. I’d broken a caster wheel and gotten stuck on a university sidewalk in 102 degree heat, and she was telling me about her own experiences getting stranded after one of her tires popped. She’s right; if you’re wheelchair breaks, you’re stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where you’re going before you leave. Familiarize yourself with the wheelchair repairs shops in your area. Sometimes places like bike shops will be able to help you fix smaller things. I always carry an Allen wrench with me in case I need to take a part off. And don’t worry; you’ll find that if something does go wrong, people are far more willing to help than you’d expect. One of the sculpture professors in the art department found me that day and went back to his workshop to get all his tools. He brought me water and sat in the sun while he tried to fix my wheel, and when he couldn’t, he offered to drive me wherever I needed to go. This man was a tenured professor with a prestigious MFA, and he was running late for a party where he was supposed to be handing out awards. You’ll find lots of good people when things inevitably go to shit.

Going along with the last point, your wheelchair will break, and you will have to send it into the shop to get repairs. If you can, invest in a cheap manual chair that you can use in emergencies. If you live with other people, you can buy a transport chair for cheaper, but you’ll need someone around to push you because it won’t have hand rims.

If you’re new to wheelchair use, give yourself space to feel all the emotions. When I first started, I had been using an office chair(!) to get around. My mom would push me from my bed to the bathroom and then back to bed while we waited to get a rental. I was so relieved when I got my own chair that I pushed everything else down. It took months to allow myself to be sad about all the things I couldn’t do anymore and be angry about all the inaccessible infrastructure that America has. Don’t push it down. Talk to a therapist or find people in the community to discuss it with. (If I choose to talk about my frustrations with friends, I always start with “I need to vent right now, and I’m grateful you’re willing to listen to me, but I’m not looking for any solutions to this at the moment,” or “can you give me some suggestions to work around these things that are frustrating me?” This gives my friends insight into what I need, instead of making them guess. It keeps us both from getting frustrated, and I highly suggest it, especially if you or your friends have trouble navigating social situations/expectations.)

Hand Controls

Hand controls are great option for your car if you’re unable to use your feet to drive. I got mine about a year back, but it was tricky and really confusing at first.

First thing you need to know: you can’t get hand controls without a prescription from a specialist. Usually a certain type of occupational therapist. You can look up driving rehab OTs in your area, but there aren’t many of them, and lots of the time you’ll have to drive several hours to see one. There’s usually a long wait list as well. (And of course, a lot of them don’t take insurance.)

If you’re able to find someone who’s certified, they’ll do an intake appointment and assess your physical abilities and needs. Sometimes, they’ll do the assessment and decide you aren’t fit to use hand controls. This can be for a multitude of reasons, including impaired mental cognition and slow reaction time, issues with hand or arm mobility, or there might be a better way to adapt a car for you. Again, it varies greatly on the person, and I’m not an OT, so I don’t know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, you’ll be required to do a certain amount of training where you practice using different equipment. Some OTs will know what you need to use right away, and others will have you try different things out to see what fits best. There’s a lot of types of hand controls and a lot of adaptations that can be done to a car, so it really depends on the person. My training was only about 15 hours (plus independent driving practice), but it’ll depend on whether this is your first time ever driving, if you’ve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once you’ve completed the training and received your certificate from the OT, they’ll write a prescription to send to a shop that does specialty car adaptation. Kind of like wheelchairs, the shop you go to is very important. Ask your OT if they have any favorites in the area. Insurance never covers this, and some shops will way overcharge you if you’re not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It would’ve been a lot more to add other adaptations like a lift or a ramp, but sometimes you can buy used accessible vans for cheaper than adding it to your own car. Something to know: you’re usually able to turn your hand controls on and off. So if your friend needs to borrow your car, or you need to let a mechanic test drive it, you can disable to hand controls and allow someone else to use the foot pedals as normal.

Overall, it’s a very long, very expensive process, so plan ahead and be prepared to wait and pay.

Navigating Raising a Kid with Chronic Illnesses

I don’t have any kids, but my mom was my sole caretaker growing up, and I can offer you some of her thoughts. You have to remember that no matter what age your kid is, chronic illness is an impossible thing for them to deal with, and yet they have to deal with it anyways. Sometimes, there’s no good way to comfort a child who’s in 10/10 pain, or who’s about to undergo a life-altering procedure. All you can do is your best. Communicate. Offer support. Give affection. Make your love unconditional. I was a very angry teenager. I was angry with my mom that she couldn’t fix it, and I was angry with my doctors for the way they treated me. There were days where I would yell and sob and refuse to take my meds, and there where days where I would stare at the wall and not respond to anything. It drove my mom up the wall. She’s used to fixing things, and this was one of those things she couldn’t even help. I know she stills holds a lot of guilt for this, but she shouldn’t. She did her best. You’re doing your best too. You can’t fix everything. That being said, here are her suggestions:

Therapy, therapy, therapy. They might hate it, but some day, they’ll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. It’s better than them sitting and not speaking the whole session.

Lots of kids with developing rare undiagnosed diseases will go through this vicious cycle where they get a new symptom, get sent to a specialist, get dismissed, and then develop a new symptom and start the process all over again. It’s not easy. My mom was a fan of throwing Pity Parties. Every once in a while, when the grind of it all started making us feel hopeless, she’d take me to the store and say, “pick out snacks and drinks. We’re going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, we’ll dust ourselves off and try again.” It helped. It was good to know that sometimes you can let life feel unfair, and it was even better to know that the next day it would be easier to try again.

A lot of being chronically ill as a kid is getting decisions stripped from you and having unexpected negative experiences. My mom would try to do spontaneous things every once in a while to remind me that not all surprises are bad. Instead of driving straight home after school one Friday, she took me to Starbucks without saying anything. After an MRI, she stopped at an art fair and let me pick out a necklace. We would go to the library after I spent the day in the hospital. Sometimes, she’d call my aunts while I was at school to come over and play card games on the weekends. And she was really big on giving me choices in everything. She never made me agree to new (non-lifesaving) treatment. Ever. If she really wanted me to do it, we’d talk it over and come to an agreement that made us both happy. Sick kids are forced into adulthood early; they know how to make calculated, logical decisions when needed. Let them be a part of their own healthcare. (They should also be given the chance to make rash, stupid decisions that have no bearing on their health.)

Keep track of everything. Doctors, meds, ER visits, PT exercises, diets they’ve tried for GI issues, everything about the surgeries they’ve undergone. Some day, you’ll need it. Or your kid will grow up into a chronically ill adult, and they’ll need it.

Talk to their school counselor about getting a 504 or IEP. Even if they’re not struggling. I was a super academically minded kid; I didn’t struggle to understand new concepts or complete homework correctly. But eventually it became hard for me to attend class and finish assignments. Having an IEP saved me. 504s are a lot easier to get (a lot less paperwork, less testing, less pushback from admin), but they’re not legally binding. If you want something concrete and all-encompassing, go for the IEP. IEPs are also really helpful when trying to get accommodations in college. You can also start with a 504 and switch to an IEP later. While we’re on the subject of school: remember that education is important, but school is not the end all be all of your child’s life. What should matter the most to you is that they end up safe and happy. I didn’t graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I could’ve made at the time, but it was still tough for my mom. I ended up going to college, and now I have a pretty solid job, but every kid will be different. Their mental and physical health is the most important. School is a huge huge huge stressor. Don’t make it harder for them than it already is.

Dating

God dating sucks enough on its own, but adding in chronic illness and disability just makes it a shit show. I don’t have a lot to offer on this other than you shouldn’t settle for anyone who doesn’t respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. They’ll be nasty, fetishizing, infantilizing, dismissive. Some won’t be able to put up with all the things that come along with being ill. I sound like a broken record, but find a good therapist who can help you voice your needs and expectations clearly. Remember that you never have to go on a date if you don’t want to. Participate as you see fit. Throw it all out if you want.

I don’t have enough time to go into my tips for intimacy/sex and disability, but I’ll give you the highlights.

Communicate. Make it very clear what you’re able to do, what you’re interested in doing, and what you don’t want.

There are lots of ways to have sex. If you’re both having fun, being safe, and engaging consensually, then you’re doing it right. Don’t let abled bodied people tell you the way it should be done. There are lots of accessibility friendly toys to invest in, too.

As weird as it might sound, don’t be afraid to take breaks. Keep water near by. If you have POTS, keep salt or electrolyte tablets on hand. If you have to stop to vomit or go to the bathroom, don’t let it shame you. Go at your own pace and take care of your body.

Misc

Having seizures on a college campus: Most universities have a policy that if you lose consciousness while on campus, they have to call an ambulance. You are not required to ride in the ambulance. You can decline, and the paramedics will make you sign a form before leaving. If you’re still actively having seizures, then they’ll take you anyways, but you probably won’t be in any shape to try to decline. If you’re having seizures regularly, tell your professors. It’ll freak them the fuck out, so warn them ahead of time. It makes the whole thing a lot less awkward when you collapse in the aisle during a lecture. Related to that: communicate with your professors about all your accommodations and emergency health needs. They really honestly appreciate it when you talk to them about this stuff. Even if they have a big class and don’t remember you, it’s good to send them an email and introduce yourself. Hopefully, you’ve also talked to your college’s Disability Resource Center. If not, go do that. Now. (There’s a whole lot of shit that I have to say about campus accessibility and disability resource centers, but I’m not gonna go into it right now.) Also, wear your medical alert bracelet. I know they suck, but it sucks more for someone to be digging through your pants pocket while you’re seizing to try to find your wallet. And keep your emergency contact info pinned up somewhere in your dorm. I used to put mine on the fridge and point it out to my roommates at the beginning of term. It can take a while for RAs to pull yours up, so it’s best to make sure it’s easily accessible.

Remember that you do not function like a normal person. There is no wrong way to solve one of your problems. If you need to put a stool in your bathroom to sit at while you brush your teeth, do it. I got an extra tall stool to sit at while I cook at the stove because my wheelchair is too short. (Cooking in a wheelchair is another thing I could talk about forever.) If you need to wear a sleep mask on the bus because the light makes your migraine worse, do it. People can look at you funny all they want. Like I said, I rolled around my house in an office chair while I waited for a rental wheelchair. What I’m trying to say is find things that work and implement them, even if they’re non traditional.

Here’s what I pack in my bag for an ER visit: headphones, phone charger, book, zofran, Naproxen, water bottle, wallet with cash, socks, and sleep mask to block out the waiting room lights. If I’m expecting to be admitted, then I’ll pack more, but I try to keep it light if it’s just triage and a visit with the ER doctor. Sometimes I’ll stuff a granola bar or some almonds in there too.

My biggest tip for surviving hospital stays is to get out of your room (if possible). Go on walks around the unit. Some hospitals have little courtyards patients can sit in. If you’re in peds, go visit the rec room, even if it’s awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and you’ll thank yourself later when you’re stuck in bed at 3am. Also, tell your friends to come visit you. Not everyone will be able to, but most people are happy to come hang out for an hour or two. It’ll help; I promise.

Clean your room every few weeks. Dear god, clean your room. I have trouble with executive functioning and finding energy to do housekeeping type stuff, but I get more depressed when my room is gross. So clean your room. Especially if you have hypersomnia/sleep excessively.

Don’t force yourself to use a pill organizer. I know everyone says it makes it easier, but I get overwhelmed when I have to refill it, and then I just don’t end up taking my meds. If it doesn’t work for you, don’t do it. If it does, then do it!

Don’t buy the self help books your therapist recommends unless you’re actually interested in reading them. It’ll just sit on your shelf and make you feel guilty for not being good enough.

Mental illness is tightly bound to physical illness. Try to be an active listener in your body. Sometimes, when I’ve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and it’ll frustrate the fuck out of me because it seems like it’s happening over nothing. I try to track when my emotional state is worse to see if it’s correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. It’s a balancing act. Just do your best.

Hobbies are so so so important. Make sure to give yourself time to work on them! And there are a million ways to adapt the activities you love if you’re having trouble, so don’t afraid to do some research. I know they have crochet hook grips for people with arthritis or loose grips, and there are super intense magnifying glasses for people who like to cross stitch and are having trouble seeing the tiny ass holes. I have a color blind friend who sends us pictures of paint to see if it’s the shade he wants. Very occasionally, you’ll come to the conclusion that there’s a hobby you can’t adapt. Let yourself be sad. I can’t hike anymore and it sucks. I can’t go tide-pooling either, and its not like if I just work really hard I’ll be able to do it some day. Life is shit, and sometimes you have to let things go. Be angry, be sad, tell people to fuck off if they try to turn you into inspiration porn, but also remember that there are lots of other cool things out there to try.

Going along with the hobby thing: take the time to learn ASL if you’re having trouble with your hearing or if you often go nonverbal. One of my friends had to get hearing aids last year, and we offered to learn with them, but they were hesitant because it feels like a non necessity to them. Something selfish that would take up all our time. If you think it’ll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldn’t engage in activities unless we gain money or power from them, but that mindset will kill you. Your life will be infinitely easier if you learn ASL online with your partner or friends or siblings.

Look up Spoon Theory. It’s not a helpful metaphor for everyone, but most people in the community talk about it, so it’s good to be familiar with it.

Don’t be afraid to go out and find community! Find support groups, look up wheelchair sports if you’re into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. I’m wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people who’re looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. It’s important that we share with and support each other.

I know a lot of this is basic stuff, but it’s helpful to have reminders, and if you’re new to the whole song and dance, then it’s nice to get a sneak peak. There are a million things I didn’t get to, but this was what was on the top of my brain.

Also, I’m not the collective voice of every chronically ill person in the world. My experiences are not yours and they’re not everyone else’s. What works for me, might not work for you. Be kind.

#thanks to @thenarrativefoil for reminding me that we need to share with each other!! #if you have any suggestions for dealing with gastroparesis please hmu #I’m still waiting for my gastric emptying scan but I’d like to try out some of y’all’s tips #hopefully some of this is helpful to someone #chronic illness #chronic pain #disability #seizures #nausea #wheelchair user #ptsd #mental health #hand controls #medical insurance companies suck #therapy #so much talk of therapy #spoonie #if this is helpful to anyone I’ll make another

[salt-baby]

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

#theres so much that contributes to this #and its such a traditional field that any change takes ten years to take effect even when its not as controversial as disability rights #ive no lost love for doctors as a whole #but the deeper causes here need to be examined to understand how this problem manifested and what can be done to fix it #disability #chronic illness #ableism #premed #medicine #salt baby talks

[syfja-katterdyr]

I'm sharing this across all my media platforms. Please, even if you don't donate, help get her story out. I didn't mention this in the story but our employer isn't working with her to give her the benefits they offer such as short and long term disability and sick pay. In fact, they denied her short term disability.

#help #charity #fundraising #medical debt #insurance companies can go suck dicks #we need universal Healthcare #donatetoday #donations #help a family

[scientia-rex]

Sometimes people tell me I'm a good person. I'm not a good person by nature, or by default. I'm a good person because I've decided that it's important to me to act like one, on a daily basis, forever.

My actual nature is that I want power. I want power and I want my life to be easy and I want other people to be forced to be nice to me even if they hate me. I want other people to have to suck up to me, I want to watch people who I know hate me suffer through the indignity of having to suck up to me. I want to hurt people who hurt me. I want all of these things in the same exact deeply recognizable way that a gorilla or a chimpanzee does. I watch those documentaries and I recognize myself, intimately. The fact that I can behave like a good person in spite of that has taken me a long time and a lot of effort to achieve.

What you feel isn't as important for your "goodness" as what you do. And you get good at what you practice. So practice your skills at being polite, pleasant, kind. Practice gently interrupting negative behaviors--whether that's someone's negative behaviors directed towards themselves, or directed towards someone else. The idea that we have to be inherently without sin is such Christian garbage. It's psychological gibberish. We want things! We want everything! That is normal and human and the key is not acting on every bad feeling you have.

I have taken my insatiable desire for power and to manipulate people and I have used it for good. I have learned how to manipulate people into coming to the doctor and taking their blood pressure medication and being honest about their recreational substance use. I have taken my psychology education and I have used it to craft a persona that makes people feel at ease. I go home at the end of the day exhausted, because maintaining a persona for ten hours straight is exhausting, but I do it happy, because I manipulated the people I work with into feeling better and having brighter days. I manipulated my patients into feeling good about their achievements and recognizing where we need to do things differently.

The hard part is that when the mask slips, people find it not just off-putting but deeply upsetting. When I explain things like "I have thought very carefully about how I would conduct a career in domestic terrorism because I would genuinely like to bomb the headquarters of most American insurance companies, but I don't see a way to do it without getting caught and either killed or spending the rest of my life in prison, and at the moment I consider that an unacceptable outcome," people go from "ha ha! my wacky colleague" to "Jesus Christ, I didn't realize there was something actually wrong with you."

Anyway, don't make your kids read the extended works on Machiavelli at twelve, my dad thought he was helping me but all he accomplished was making me sad I'll never be a king.

[thecoolergrey]

shout out to people who know there’s something wrong but can’t convince a doctor to actually look into it instead of just treating the symptoms and hoping it goes away

shout out to people who have multiple conditions that interact in unexpected ways and/or get mistaken for one condition

shout out to people who have to constantly convince doctors that just because a certain test came back normal doesn’t mean nothing’s wrong

shout out to people who don’t have access to a doctor that specializes in a field related to their condition and have to make do with whoever is available

shout out to people who got called a hypochondriac for years before finally finding a doctor who would listen and take them seriously

shout out to people who got told for so long that they were faking it for attention that they started to actually believe it despite knowing deep in their hearts something was wrong

shout out to people who are scared to speak up about health problems they’re having because of the stigma surrounding them

shout out to people who never talk about their pain and constantly mask it out of fear of being a burden to others

shout out to people who do talk about their pain and get told to just suck it up

shout out to people who have to fight their insurance companies tooth and nail every time they receive even the most basic medical procedures, and start an all-out war with those companies to get lifesaving treatments

shout out to all the people disenfranchised by the medical system. I love you all.

#cripple punk #cripplepunk #physical disability #physically disabled #chronic illness #chronically ill

[normal-horoscopes]

It sucks that Scientologists and right-wingers have dominated the very real discussion about the dangers of psychiatry and medication

Genuinely yeah. The flaws of the late-captialist medical industry are on of the largest radicalizing factors for USAmericans especially. So many americans exist with crippling chronic illnesses that they can't afford to treat while at the same time seeing stories about new medical advancements on the news. I think pretty much every USAmerican understands that something is fucked up with the medical system but they don't have the tools to navigate the labyrinthine interaction of profit motives and insurance and pharmaceutical companies, how drugs are marketed to doctors, or how medicine is even taught.

Deconstruction is scary! Taking something apart means you have to have an opinion about how to put it back together again! So its really easy for some pseudomedicalist grifter to say "they're giving you poison to depopulate the planet" because that all that requires of the victim is simple rejection. "Not X but Y"

[hollowboobtheory]

what if serious companies did april fools like what if you got a letter from your insurance company that said your claim for lifesaving medical treatment has been denied.... APRIL FOOLS. that'd fucking suck.

#beck rambles

[transgenderteensurvivalguide]

how do I get top surgery if I’m not non-binary/transgender?

like. I’m fine with how I am. I’m agender, but I don’t mind being perceived female. but I would like to not have boobs.

thanks!

Lee says:

Just to define some terms for folks who may not be as familiar--

The word "non-binary" is an umbrella term that is inclusive of (but not forced upon) anyone who does not fully identify as solely male or female 100% of the time. So if you're agender, you can call yourself non-binary if you want to.

Similarly, the word “transgender” is an umbrella term that is inclusive of (but not forced upon) anyone who does not fully identify as the gender they were assigned at birth 100% of the time. So if you're agender, you can also call yourself transgender if you want to.

You don't have to identify as non-binary and transgender if you don't want to, but both terms are labels that you are more than welcome to apply to yourself if you find them useful when seeking surgery.

I am genderqueer, and I also identify as non-binary, transmasculine, transgender, and transsexual. During my medical transition, I was very open about my identities to the mental health providers who wrote my letters of support for gender-affirming surgery, and I didn't have any issues getting my surgeries as a result of my gender identity.

Unfortunately, I know that there are many therapists and surgeons who aren't particularly knowledgeable about gender-expansive people and that can result in more gatekeeping when trying to access gender-affirming surgery for some folks with less luck than I.

Location can also influence this-- I live on the East Coast so I had more options than someone in a rural area of the South, for example, so I could be pickier and had more choices of providers to see.

It's still possible to get surgery, but it can just be a little more difficult which means you have to be a self-advocate and fight for what you want, which sucks but you gotta do what you gotta do to get the care that you need.

Research Surgeons:

Start by researching surgeons who specialize in top surgery or chest masculinization. While many surgeons have experience with binary transgender men, it's essential to find a surgeon who is understanding and respectful of your reasons for wanting the surgery.

Reading posts on Reddit and joining top surgery Facebook groups is a good way to learn from and connect with former patients who have had surgery with that surgeon is really helpful in getting information about what their experience was like.

Some surgeons do not require a letter of support from a mental health provider, removing a requirement that can be a barrier for some people seeking surgery, but that can mean that your insurance will not cover surgery as having a letter of support is often a requirement from insurance companies.

Insurance companies will only cover top surgery if it's deemed medically necessary, which means you need to be diagnosed with gender dysphoria and/or have back pain related to your chest size and/or need a preventative double mastectomy for cancer risk.

If you're pursuing surgery for what insurance companies would deem purely aesthetic or personal reasons, you might need to pay out-of-pocket, so if the reason you don't want to have boobs is because of gender dysphoria then focus on that when you're speaking to your providers.

2. Research mental health providers:

Local LGBTQIA+ community centers often have resources and lists of affirming therapists in the area. They might also offer support groups or counseling services directly.

If you're comfortable, you can also ask friends, family, or members of local or online LGBTQIA+ communities for therapist recommendations.

Once you have a list of potential therapists, contact them and ask them about their experience with agender clients, their approach to therapy, whether they are willing to write a letter of support for top surgery and what their process is for that, and any training they've had related to gender diversity.

Ensure that the therapist is licensed in your state and look for reviews or testimonials about them online-- multiple bad reviews from trans folks about them is a big red flag.

If cost is a concern, inquire about sliding scale fees, insurance acceptance, or low-cost therapy options. Some therapists offer reduced rates based on financial need.

And yeah, if you really want to you could just straight-up lie and tell them that you're a binary man and say what you think they want to hear since it's not like they can peer into your brain to see that you're actually agender. But if you have to tell the therapist and/or surgeon that you're a binary trans man to get the letter/get the surgery date then maybe those aren't the providers who you really want to be working with anyway.

So I personally wouldn't recommend just outright lying to them, but I do recommend being thoughtful and strategic about how you present yourself. Don't start off by saying "I’m fine with how I am, I don’t mind being perceived female, and I’m not non-binary/transgender." That doesn't explain why you need this surgery.

Instead you should say that you're [transmasculine/agender/applicable label] and you've been out for [insert number of years], you feel that the next step in your transition is top surgery because you know that would be happier without breasts because having them makes you feel [insert specific unhappy feelings] and that affects your life in [insert ways that it affects you] and you've felt this way about them for [insert] number of years and you're confident that this is the right choice for you and will put your on the right path for your future, etc.

We have a post on getting a therapist here, and our top surgery page has more information on the general logistics of seeking top surgery because it's pretty similar process regardless of your specific gender identity.

It's essential to make decisions that align with your comfort, well-being, and identity, and only you can decide what labels you want to present yourself with. If you are well-informed, have a support system, and choose a therapist and surgeon who respects and understands your reasons you will end up finding the right path for you.

Good luck!

Followers, feel free to add on with your experiences if you identify similarly to anon.

#Lee says #agender #top surgery #surgery #therapist #mental health #chest m #breast m

[trans-girl-nausicaa]

im sooo excited for my new job! decent pay, some healthy routines, regular socialization, plus actual health insurance that doesnt suck. I dont care WHAT kinda crazy shit i might have to clean if i can really better my life. Allegedly the company has good opportunities for advancement which really appeals to me as I have spent my whole professional life bumping up against glass ceilings. Plus its a monday to friday job so i will still get to have a regular social life outside of work. Thats one of the not often talked about downsides of the restaurant industry: Frequently working on weekends. If you have friends who AREN’T in the restaurant industry, you likely won’t have the same days off as them and it can really kill your social life.

Crucially, this job appears to have decent benefits too. Medical (with a decent insurance company even), dental, and vision. They also mentioned some kinda stipend or reimbursement for public transportation too.

I wonder if my new plan can cover laser hair removal or electrolysis? Their website lists facial hair removal as a covered procedure but idk what the out of pocket costs would be or if it’d be covered under my work’s specific plan. I got laser done on my face a few years ago but ive got some stubble coming back in :/ soooo i want to get some more treatments for that. I’ve heard some insurance plans even cover FFS (which is pretty awesome) so I feel like laser being covered is a possibility.

I would seriously consider FFS and professional voice training if I didnt have to pay the whole thing out of pocket.

In recent years I think I have seen some insurance companies and hospital systems gradually becoming slightly more competent about trans healthcare. I specifically remember when Virginia Mason announced their new center for transgender health. It was difficult going through the insurance process for GRS back in 2018. I had to have some long phone conversations with my insurance company, I had to do all the research on which surgeon took my insurance myself, and we still ended up with a few thousand bucks of medical bills for my hospital stay. Blessedly my parents were able to help me pay for it. I will be eternally grateful to them for that. Bottom surgery was a life-changing improvement to my life.

If any of you gals have any questions about bottom surgery, let me know. I feel like we dont talk about it enough in the transfem community.

#personal

[genderqueerpositivity]

my friend it seems desolate when you hear bad news like desantis's idea but a pharmacist can't refuse to fill a prescription from a doctor? that's super not allowed. and roe v wade being overturned is terrible but prescribing hormones for adults is a different story--especially in cases where someone already has a prescription, it's hard to take that away. there was a bill passed recently in my state preventing minors from getting any medical gender affirming care but even then there was a caveat excluding people who were already prescribed hormones

I don't know why you thought this was a helpful response to my very valid fears, but this comes across as condescending.

I don't live in Florida; Florida isn't the only state in this country where it sucks to exist while trans. And I do know my state laws.

In fact, any pharmacist or pharmacy in the state of South Carolina can refuse to fill my valid testosterone prescription based upon their personal beliefs at any time, and there isn't a thing I can do about it; and this is super allowed, because it is in fact, the law and has been so for over a year.

Actually, I can be refused "nonemergency" care based on a medical providers "conscience" at any time; it's fully legal, and they are protected by state law and so can't be reprimanded or terminated for it.

And this does not only apply to gender affirming care--it applies to abortion care, birth control, STI prevention/treatment, sterilization, insurance coverage of procedures from companies based within the state, etc. I speak of Roe and gender affirming care together often because they both affect my life and health, and the legal battles genuinely are connected.

Not only do I know of transmasc people locally who have struggled to find pharmacies where they can pick up their prescriptions, I also know of people who've been refused birth control prescriptions. I know one person who was refused a tubal ligation after giving birth. I know of at least one instance where a pediatrician refused to accept a child as a patient because the child has two moms.

Anyway, your state isn't the same as every state and my concerns are absolutely real even if they aren't the same as the ones you face.

#discrimination #ask box #asks

[loominggaia]

Personal Update: 4/2024

About 99% of posts these last few months have been trickling in from the queue. Typically I choose one day a week to load up a bunch of posts and then let Tumblr automatically post them for me each day. This means that my replies have probably been very slow and very late, and for that I apologize.

I've been doing it this way because frankly, my health is in the shitter again. My brain and body are just not working very well, and because of this I haven't felt confident enough to work on creative projects.

I was recently diagnosed with severe hypothyroidism. I have two tumors on my thyroid, one of them possibly cancerous, and considering my levels my doctor suspects my thyroid has probably been broken for a long time. Like, it's not just underactive, it's not working at all. My T4 levels are dangerously low, like "could slip into a coma at any moment" low, and I'm still waiting to receive my medication because insurance companies are evil, as we all know.

On top of that, I was also diagnosed with a severe case of scurvy. Yes, SCURVY, the freaking old timey pirate disease. 🤦‍♀️ This was likely caused by my gut issues, which limits my diet and hinders the way my body absorbs vitamins. Some of the gut issues probably tie back into the thyroid dysfunction.

Apparently my liver and kidneys are also not functioning very well and my cholesterol levels are high, which is surprising because I'm underweight, I'm not a drinker and I don't use drugs. I'm hoping this is just related to the thyroid thing and aren't separate issues on their own. I have various other infections and screwy lab results too, but I won't get into those or this post will be a novel. All you need to know is that my body is a disaster zone right now and it's hard to function like a normal person. I have very little energy for creative work, and that sucks ass because I have so many ideas that I want to expand upon.

Anyway, I'm just glad to finally have a competent new doctor and some diagnoses, after years of suffering and being told there's nothing wrong with me. I'm hoping to start treatment soon and start feeling well enough to worldbuild the way I want to.

Thank you guys so much for bearing with me, it means a lot. <3 You have been so supportive and helpful.

Feel free to keep sending things to the inbox! If it seems like I haven't answered for a while don't worry, it's probably just sitting in the queue and it will be posted whenever it's next in line. Sorry again for the snail pace here, but this is how it has to be until my condition improves.

4/20/2024

#update #looming gaia

[madqueenalanna]

sorry (lie) to defend hate crimes md but. i think a lot of 2020s discourse misses the context within which the show originally operated. and this is NOT to say "well racist jokes were funny back then" cause that is NOT my point. my point is all the stuff that isn't the racist jokes

like, house md started airing one year before supernatural and bones, two other shows i'm deeply familiar with. supernatural is rife with casual homophobia, racism, misogyny, you name it. bones is so deeply entrenched in boot-sucking post-9/11 government that it's almost unwatchable these days. house... isn't very topical. he makes a lot of 80s references, or older. there are maybe two troop episodes? but let's be real we've been in the middle east so long that hardly dates it. and like, what does the show house md have to say beyond house's personal bad actions?

prisoners on death row deserve respect. homeless people deserve the same treatment as anyone else. mental health conditions like schizophrenia (presumed or otherwise) or munchausens don't disqualify people from actually being sick. being fat is sometimes a symptom instead of a cause, and people overlook genuine health concerns in favor of blaming obesity for everything. orthodox jewish beliefs deserve respect, while christian grifting should be mocked. there is significant, murky overlap between chronic pain and opioid addiction and there is no easy middle ground (the show itself muddles this point repeatedly, to be fair). autism is more akin to another language than anything else, and autistic people deserve to be met where they're at. abortion UP UNTIL BIRTH is acceptable, even desirable given circumstances. it is acceptable, even preferable, to repeatedly defraud insurance companies and bureaucracies if it's in the best interest of the patient. eating disorders are dangerous/fatal and should be treated as such

like, i get it. a lot of aspects of this show have not aged well, particularly the main sell of "edgy epic atheist" house, which WAS a very mid-00s type of character. and i'm as guilty as anyone as doing pepe silvia on this show to make it sound epic (like here) but i do genuinely believe i'm not wrong. even if you don't read house/wilson as romantic, and you don't need to, their relationship is so intense that it eclipses either of their various romantic entanglements. wilson went through 3 ex-wives and an ex-fiancee, house gave up on at least 3 significant relationships. house gave up his vicodin, his medical license, his entire life so that wilson didn't have to die alone. how can that not be poignant, even now? how can anyone deny the emotional impact of that? fuck your destiel, fuck your good omens. you didn't earn eight years of THIS

rambling as usual but i'm right. this show can be a really difficult watch at times for cringe reasons but it can also be so unusually astute that it takes the breath away. what other show, especially in 2005, was giving the circle speech from "lines in the sand"? that episode aired the same year as supernatural's racist truck or bones' "troops did friendly fire but iraq was still justified" penultimate ep. can i say house was a GOOD show? idk. but it raised a lot of interesting points and had a lot of against-the-grain compassion that i still find sorely lacking even now, 20 years later

#House #And what I really respect is that through Good Doctor. David Shore is still learning and growing #Like he fucked up on intersex supermodel and fucked up again (but lessser) on intersex basketball kid #So he tried AGAIN on trans people in GD and it's better! At least in the ep I saw I'm not caught up #It's not often you get a creator so openly willing to adjust their beliefs to the current era so. Thank you David #And I've said it before and will say it again. I think it matters that David Shore is Jewish cause the show just makes more sense #Than it would from a Christian context. Esp the orthodex ep and House vs God but even casually? #Life is worth preserving? Protect the existing pregnant woman over her fetus? That is NOT a Christian belief generally #I'm not Jewish so I don't want to speak too much BUT I'm deeply familiar w Christian-led media and it sucks worse. Sorry. Not

[violentviolette]

i think i have aspd or traits . but i dont wanna go to a psych and be like " btw here are my symptoms ive never told u about before , have fun ! ( insert the entire ASPD criteria here ) . sorry " because that makes me look bad & i appear the opposite ( passive , fearful , not aggressive ) , & dont want to appear as a threat and i most definitely dont want them to think im manipulating them when im not ( like for example when im just telling them my symptoms regarding other conditions ) . and i dont want to admit to committing crimes incase they report me or i have to go through a security clearance for job reasons and they go thru my stuff . anyways as far as anyones concerned i seem nice but weird but not the type of person to have those kinds of symptoms , and i want it to keep my Good Girl(tm) image . but also . i dont want to start having legal issues , become dependent on substances , pursue any illegal occupation , etc since it would suck to get caught and im only 21 so i keep trying my best to avoid it everytime i almost continue with it , but i need help bad lol . any idea of what i should or can do ? anything helps

okay real talk but literally do exactly the opposite of everything ur doing and also get out of ur own head and stop overanalyzing every thought u have to find justifications for not doing the very simple basic first step towards what u know is the right thing to do but just dont want to because being vulnerable feels yucky and ur scared

i say this with genuine compassion and no judgement because i *absolutely* did and still sometimes do the same thing but unfortunately the only way to get urself out of that cycle is to get over urself and touch grass (encouragingly) so that u just Do The Thing u know u need to do

being open and honest with a therapist about ur thoughts and feelings is the only way to get any actual positive growth or help out of it. u cant fix what u dont talk about and keeping it all to urself will only drive u more and more insane. staying cooped up inside ur own mind without telling other ppl what ur thinking out loud creates a feedback loop of crazy. u gotta hear urself talk to another person sometimes to actually really *hear* urself, u know? ur brain is where the crazy is and u cant stay there alone and expect it to work out and get better. u have to talk it out and be confronted and challenged with other viewpoints to realize where urs are disordered if u look for reasons not to do something u will absolutely find them, and while i could offer rebuttels to a lot of ur concerns, things like how ur medical records and psych details are not that detailed. u doing illegal behavior like stealing or doing drugs is not something that gets listed on those and falls under patient confidentiality. the only thing that gets documented is the official diagnoses name which most therapists are going to be very reluctant to hardline diagnose someone with aspd (and even then it only gets logged with that practice and submitted to ur insurance only if ur seeking care like meds or hospital stays or get incarcerated. otherwise, if u dont tell someone "i saw dr.x at yclinic from 2019-2022, then they have no way of knowing or finding out what that dr wrote on their internal records/notes. there is no centralized database of "medical history" outside of ur insurance company and specific practices internal networks) individual symptoms like "illegal activity" do not get listed and unless ur planning on enrolling in the military or working for the feds no job is looking more deeply than that into ur history unless u personally volunteer it. what comes up when specific companies do background checks with a medical history is ur insurance records. ur insurance only knows what gets submitted to them specifically, if ur therapist doesnt file paperwork with ur insurance to list aspd as a diagnosis they are looking for ur insurance to pay them to treat u for specifically (instead of more generalized things like "depression" "anxiety" or just "mental health care" ect, which they have to get ur permission to do) then there's no paper trail of what u two talk about in that office or how ur "good girl" image is legitimately worthless garbage and will grant u absolutely nothing in life and clinging to it in the false hope that other ppls perceptions of u will change who u actually are and make u happy is only gonna lead u to looking at ur shitty unhappy life in 5 years and being filled with nothing but regret and anger and wanting to kill urself or that while u cant know or control how ur therapist sees u or reacts to the things u share with them, u can control who they are. if u fuck up with this therapist or it takes a turn u dont like or they start treating u badly, u can very much just get another one. u can request a different person at the same clinic for any reaosn or u could switch clinics entirely. most insurance in the us is taken by more than 1 provider in an area and there are almost always multiple practices that take the local insurance. and even then, if u wanna drive 45mins to see a therapist a town over cause u burned a bridge with this one u can do that. ur not beholden to a single person, u can get dozens and dozens of opinions. ive had over 15 different therapists in my life. if u fuck up with one u can always get another

but all those rebuttals dont really matter because if u want to, i have no doubt u could find counter points to all those points. i know i could if i tried. so really it just comes down to the simple question of are u going to keep standing in ur own way or are u going to cut the bullshit and take it seriously and do the hard thing because u know its what u need to do? ur young still, uve got so much time, dont waste more of it waiting for the perfect solution or situation because it will never exist. do it now, do it messy, do it scared, fuck it up and get it wrong a bunch, and then try again and again until it works

#jack.speaks #aspd #aspd tag #actually aspd #i know that was a lot and sounds harsh but this is honestly how i talk to myself #and its been the most effective way for me to cut thru my own shit #so pls know im not trying to judge u or be mean or hurt ur feelings or put u down in any way #this is all shit ive told myself before because sometimes u just have to be blunt and say the quiet part out loud to get thru to urself #so i hope that helps u to and i hope u start doing the real work to get better #because u deserve to get better and to have a good life that u enjoy living

[newkiqx]

Nearly every single modern computer utilizes cobalt, a mineral whose supply chain is so heavily dominated by slave labor that it's practically impossible to ethically source. Ignoring AI, it is even ethical to do digital art at all? The production of a drawing tablet is not a victimless crime.

I feel you when you want to reduce this to something as simple as a comparison. But bear with me (or alternatively, I put a tl;dr/conclusion at the end).

Much of capitalism is unethical - yes. I agree with this point completely. It's impossible to completely avoid unethical consumption in the world we live in. But it's good to be thoughtful of it and I think businesses and governments responsible for bad practice should be held accountable. Sadly I can't change the world on my own in any meaningful way, but i'll do my part where I can & vote people into power that care about this too.

Taking your comparison for a second, I feel like the art project of that OP was asking a much more direct "I bought cobalt I didn't need and then turned into a children's toy, could this be art?". And my reply was basically yeah sure it could be art, but was it worth it? My point is that I'm not sure on that last part, and leaning towards a 'no'. They specifically sourced it unethically and made that the center piece, which is distinct from the utilitarian nature of consumer electronics we need to get through our lives. Unethical sourcing of art can be a goal or statement (like here cw dead pets) but will then of course still be a part of it. I don't think ethics were considered for the post we're discussing though and it instead only discussed the very unproductive 'is it art' discourse. This, of course, matters about as much as my "dick" being objectively "long" or not.

Maybe getting a little sidetracked, but I also want to mention that cobalt is an extremely useful metal, whereas AI.. well.. i've mentioned the very human cost of mturk and the wholesale theft of the entire internet. There's also:

the power required

the jobs in art it threatens and therefore the skilled labor we stand to lose if we're not careful

the inevitable price hike and betrayal of the public as soon as alternatives are out competed (this will happen)

the risks of biases (racism, ableism, sexism) in an opaque weighted system like AI & the fact we cannot deal with this except for slapping some extra prompts in front

AI poisoning our actual collective knowledge with untrue shit. Recent cases in point being the hilarious fake mouse dick science being published and the ai generated inaccurate servals on google, but there's a lot more going on

the risks of companies and people in power using AI to more efficiently screw everybody over and hide behind 'machine told me so' accountability loopholes

the risks of AI being used in all sorts of malinformed use cases

But what are the gains? What do we stand to win? Call me cynical, but we already had an infinite amount of pictures at our fingertips, as well as all the mediocre writing you could ever want (but actually much better because someone loved writing it). I feel like all these general AI's are good for is filling the pockets of some very rich robber barons and grifters, as well as diluting everything that's beautiful and true in the world.

Quick sidenote - Some specialist AI have genuinely already improved the world, like with medical screenings, but even then it's hard to really call it a win because reverse engineering the reasoning of an AI is so fucking hard. And again, they're a slippery slope with insurance companies wanting a piece of that pie badly, just so they can apply their 'justified' penalties to people not even sick yet.

tl/dr; So in conclusion, no, I don't think your comparison holds up. I agree that it sucks that so much of necessary consumption is unethical in ways we can't easily fix as consumers. But one thing bad does not equate other thing good. If anything, it should inspire you to do better where you can make a difference and hold the ones responsible for the exploitation in this world accountable.

Don't let it eat you up though. I'm not even saying you can't use it for inspiration ever. But any art based on these generated pictures cannot be divorced from the ugly side we'd rather not see: the underpaid army of technically not slaves and the wholesale theft of everything.

also sorry but i couldn't not include this (source: matt bors)

#long post #txt #ask #fuck ai art #ai #ethics #negativity

[tj-crochets]

Hey y'all! I am once again in health insurance hell, and could really use some help. I have a specific US health insurance question, but it might get long so it's below a read more

My employer offers two health plan options, and they are both absolutely terrible. I want to get my own health insurance, but the insurance broker lady I used when I worked part time says I can't, because I can get health insurance through my employer, even if I opt out. I spoke to another health insurance person today, and she said if I get a letter on company letterhead saying I'll lose health insurance on [date], as long as it's 60 days or less from now, it counts as a qualifying event and I can buy my own health insurance. She said opting out counted as losing health insurance. Do you know anything about this? How do I get health insurance as an individual NOT through my employer even though my employer offers it? The plans my employer is offering are Aetna, and Aetna is the absolute worst and I despise them as a company so much one of my long term goals is to warn people against them. They suck! They refused to pay for my inhaler until I got my doctor to fill out a form like three times, and also I had to email them A LOT and fill out a LOT of surveys with an emphasis on how horrifying I found it that they as a company clearly valued profit over their customer's lives, and would in fact prefer their customers die before they could reach the ER in case of an emergency, as evidenced by their refusing to pay for my rescue inhaler, a necessary life-saving medication. They also require I fill that form out every year, just in case I magically stop being in the small minority of people who get severe adverse reactions to albuterol and levalbuterol

#the person behind the yarn #tj is in insurance hell #I also promised Aetna I'd make it a goal to share my story on social media about how terrible they are as an insurance company #it's been months since they started actually paying for my inhalers but I'm still salty about it! #and I am not done telling people they are terrible #I promised them on all those surveys that I would post on social media and tell people in person whenever I had the slightest excuse #I said I'd tell every medical professional pharmacist and person in a waiting room I ever interacted with #and then they were magically willing to pay for my inhaler! #I'm still telling people though. It wasn't a 'pay for my inhaler or else' kind of thing #I was just telling them what was going to happen because of how they chose to run their business #so yeah. Aetna's the worst avoid them if you can #the didn't pay for my heart monitor when I've had idiopathic tachycardia for OVER A DECADE #they don't want to pay for one of my meds because they want me to use a specific pharmacy #but I'm allergic to the inactive ingredients used by the only manufacturer they have for that medication #I literally can't take it without having a severe allergic reaction #but they still want me to use it because it comes from the pharmacy they own #(or are owned by the same parent company? Not sure what it says specifically on paper)

[jupiterjames]

Hi! I saw your insurance call and am in awe! Also looking for advice, but if you don't have the spoons feel free to ignore! I recently got my fallopian tubes removed and since my insurance is ACA-compliant they have to cover it 100% but they don't want to. I've called multiple times, sent a written complaint I'm waiting to hear back from, but do you have any advice on how to deal with it?

As a former insurance lackey, yes I might be able to place some stones here! Disclaimer as always, this isn't legal or medical advice since I'm not your rep, blah blah. Okay!

So, few things. There are definitely differences between "don't want to cover" and "refuse to cover." Now, since you mentioned they are ACA-compliant, then they are most likely refusing to cover and it COULD be for a variety of reasons.

1) They determined the procedue was not medically necessary.

2) Your doctor/hospital/someone in billing somewhere coded the procedure wrong on the claim, thus allowing the "must cover" to "doesn't need to cover."

3) Someone failed a step in the approval and/or pre-approval process which allowed insurance to deny out of hand.

4) Whoever processed the claim done fucked up and rejected it due to human error.

Now, in 3 out of 4 scenarios, the solution is the same. Filing a compliant does sweet fuck-all. Filing an APPEAL forces them to respond, usually by reevaluating or at least resubmitting the claim internally.

HOWEVER, if the procedure was coded wrong (which doctors and admins at hospitals do all the ding dong day), then you need to speak to the billing and coding to get the hospital or doctor to resubmit the claim wirh the proper codes that will trigger acceptance of the claim for ACA-compliance.

If the claim was rejected out of clinician review at the insurance company as being medically unnecessary or "elective" NOW you need to call the doctor who ordered the procedure, and have them call your insurance for a peer to peer review of the case. That can overturn the rejection because WOW doctors don't like being told by someone who hasn't even looked at your charts, that they're wrong. And they'll fight about it.

And if a paperwork error like improper coding, not getting the necessary pre-approvals, etc. is the issue, then you can absolutely contact your providers and get that fixed and get copies of all pre-approvals plus your records of the medical necessity to file a formal appeal with your insurance if they're gonna be particularly stubborn.

I know this sounds like a lot and a pain in the ass (it is) but an appeal form can usually be found on your insurer's website (if they're a bigger one. Smaller ones you might have to call or email for the form) and are straightforward. But doing that part, even if you don't have all the backing evidence you need yet, is IMPERATIVE to do within whatever timeframe your insurer allows for appeals. There is ALWAYS a time limit, and filing in a timely manner also hits the pause button on them trying to collect payment until a decision is rendered. Ideally. Not saying some insurers aren't super shitty about harassing you for payment regardless. But they SHOULDN'T with an active appeal.

Since I don't know specifically what happened with your claim (and please don't tell me if you do know, as I am a stranger on the internet and you should protect your PPI and HIPPA info as much as possible), I can't really point you in a solid direction, but a good first step is seeing how the procedure was coded and if a coding error is the issue first. That's easiest to fix if your care team doesn't suck at paperwork because they will get everything redone and resubmitted for you.

I hope this helps and isn't super confusing and that you recover well and stay as healthy as possible!