#showing symptoms. but I can’t afford to go to the doctor. and health insurance is expensive

[ceramicskies]

I made $200 in tips last yesterday ❤️❤️ maybe I will be okay 😎

[danideservedbetter]

Day 7, 8, 9, and 10 / Elaboration

Hey y’all! I said yesterday I would elaborate a little more on what my doctor’s visit yesterday told me, and here I am to do just that! I meant to yesterday, honestly, but by the time I got home my medicine had worn off and that wasn’t looking very likely 😅😅 But regardless!!! Here is what my results look like and honestly? These things probably have been affecting my sleeping disorder to a degree I’d previously disregarded without detailed info I’ve gotten from these tests.

Full write up under the cut!

—I got two major tests done, blood work and a genetics test. Back in my hometown the nurses couldn’t even figure out how to open the damn swab, but technology here managed to map out my entire DNA sequence which is utterly NUTS to me.

—My body is deficient in almost every important vitamin known to mankind, which makes sense because my diet is not… the best 😅 So, I started on several (SEVERAL) supplements to start out.

—I say start out because it’s very likely that I’ll be taking vitamin C and some liver enzyme through an IV once a month. A younger me might’ve thought something like this was scary, but at this point I’m so desperate to be healthy that getting nutrients drip fed into my system for them to work quicker sounds just fine to me.

—Other than that it’s normal lifestyle stuff. Eat more fruits and vegetables (I’ve been eating olives by the can for like days and I intend to buy fresh fruit packets for breakfast whenever I can afford them) as well as staying more active— which I DEFINITELY have been since I moved closer to New Orleans, in Louisiana proper where my dad lives.

But enough of the boring medicinal stuff. I’m sure you guys are much more interested in the whys— is there a reason my hypersomnia is so bad? Is there a deeper explanation than “lack of vitamins bad and you should feel bad”?

Well, yeah. YES. The genetics test revealed a metric fuckton to say the least 😂😂😂 but the most important was what kinds of diseases I’m predisposed to or how my body can process certain types of hormones/enzymes/proteins. Things like why caffeine won’t work for me (my body processes it very fast but not very thoroughly) or my metabolism being the strongest recorded genotype (which is why it’s been so hard to gain weight). Below, I’ll go into detail about stuff my new general doctor’s in-office geneticist (I still can’t believe that’s a thing I’m typing) has revealed about my disorder.

Naturally, this is specific to me because of my parents and our family lines. Maybe if you see info pertinent to yourself, looking into genetic mapping may be a good idea for you?

We are pretty confident that I have Idiopathic Hypersomnia. The reason for this is that a tiny link has been found between individuals who contracted mononucleosis in their childhood and adolescence and individuals who fell within the sleep cycles indicating IH. Now, IH will be genetic sometimes, but considering I’ve tracked my disorder to starting around 14, the same year I contracted Mono, the coincidence definitely doesn’t seem like… well, a coincidence. My blood test shows that I do in fact have the antibodies in my system, and they’re doing something… odd.

The geneticist found some “active” antibodies. Well, not some, really 😅 Basically, she’s surmised that these antibodies have a hair-trigger response and can react to any given environmental factor (stress, hunger, etc.) to the point where they activate as if they think they’re **fighting off a virus that’s been out of my system for ten years.** Of course this takes up an inordinate amount of energy, which is her hypothesis as to why my hypersomnia is so random and varies in intensity. The goal for this summer is flushing these antibodies out of my system.

My previous neurologist tried out a couple stimulants and then shit insurance prevented me from trying any others. So I’m stuck on something traditionally prescribed for adhd. A narcotic. *However* since my body is severely dysfunctional in general, the way I describe it is I basically have to induce a high to stay awake and function normally. We want to eventually get me off of these kinds of drugs, of course, since prolonged exposure weakens their effects and they’re highly addictive.

Another in credibly interesting thing we found is that I'm lacking in three major hormones. However, it's not because I don't produce them. I've never identified with symptoms of depression (anxiety, certainly, but not depression) yet for most of my life my childhood general practitioner insisted I had it. Well, the geneticist found that while I'm lacking in serotonin, dopamine, and melatonin, which yes are the two major mood enhancers and then the hormone that induces sleep, it's not because I can't produce them. It's because my neural transmitters are so damaged from a less-than-good diet and years of exhaustion that they simply can't process them. Just as the antibodies can have a hair-trigger response to environmental factors, so too can these processors. Simple things like a good meal, my high from my stimulants, or even micro dopamine shots from getting things done can activate the transmitters. Another thing on the docket for the summer is fixing these permanently with treatments of vitamins and supplements.

My stimulants have caused appetite issues, unfortunately, and that plus Covid at the beginning of this year caused me to get down to my lowest recorded weight ever, 94 pounds, which I haven't weighed since before I hit my final growth spurt way back in middle school. My dad does physical labor (he's a contractor who frames houses in the humid heat of the Deep South lol) so he's used to feeling tired. When he caught Covid, he said that he'd never felt as tired, drained, or out of it in his entire life. He never gets sick and hardly goes to the doctor and NEVER takes off work because of health, but in his last few weeks before full recovery he had to take off early multiple times. He was floored when he described the brain fog and exhaustion and I told him that I had no idea I even had Covid, because I just thought it was my disorder acting up. It was only when my grandmother started feeling tired that we got tested and we tested positive.

All that said, we think that there's hope for a future for me. She said that while there's no cure for IH, the cause that I have may can be mitigated by changes in exercise, diet, routine, and medication,to the point where I may mitigate symptoms of my disorder entirely. I'm still setting up appointments with a new neurologist here in the city, though, because technology is of course more advanced here.

And again, taking all of this into consideration, while it was looking likelier by the day, we've both agreed that I'll be here in the city 'til New Years. Which means no school this semester, but if I can go back in spring at more than 20% functionality and maybe succeed, I'm perfectly fine having to remain on break.

However, another good update: I weigh 103 pounds! I'm steadily gaining weight-- which means the other medication, the one for my appetite, is working as it should and as long as I stay on-track I should reach my goal of 120 by the end of the year as well.

So, yeah! That's what it's looking like. I have another appointment to go more in depth with the results tomorrow, but for now I'm planning out my week since I decided to let myself rest all last week. I'd love to finish helping out for our current podfic, ACTUALLY start the damn 100 Theme Challenge (LOL), finish betaing something that's been on hold for months, properly reconnect with our discord, catch up on all the media I fell behind on, clean my damn room, and establish a budget for this week on what I can buy. A more specific plan for today will follow, but til then, I hope this gives everyone some insight on what I'm looking at and how I'm gonna try to fix it.

Xoxo

Dani

[sageblogsthings]

Do you have any tips on how to write characters with scoliosis in a respectful/accurate way?

Thank you so much for asking! I smiled like an idiot when I saw this ask. :) Let me preface this by saying that scoliosis can vary a lot from person to person depending on the severity of curvature, location of curvature, treatment methods, etc. So I think that, as with anything really, getting a wide range of viewpoints and voices on the issue will make it easier to write! Honestly just scrolling through the scoliosis tag on tumblr will give you a good sense of what it’s like for some people too. With that being said, I’ll talk a bit about my experience, and how I wish that characters with scoliosis were portrayed. Just know that my answer is far from universal amongst those with scoliosis. Also, medical treatment where I live is pretty shitty so I may have some other undiagnosed stuff that I’m attributing to scoliosis who knows lol. And I’m still learning a lot about it myself! Ok, with that caveat out of the way, here we go!

I’m gonna put a tw here for discussions of scoliosis, chronic pain, anxiety, and depression

Also, for those who don’t wanna read about my experiences with scoliosis, if you scroll down there’s 13 tips on how to write characters with scoliosis (a lot of these tips apply to chronic pain in general tho). :)

To talk about my own experience a bit, I was first diagnosed with scoliosis when I was about 10 or so. When I was first diagnosed they told me it was minor and just to watch my posture. Scoliosis runs in my family but for most of my family members it’s pretty mild so I didn’t worry about it and went on my merry way. In hindsight, not the best way to deal with that but ah well.

Flash-forward to college. I had been having back pain and headaches for awhile, but I just figured it was studying for prolonged periods of time, carrying a heavy backpack frequently, and not watching my posture when I studied. I never connected it to scoliosis because I hadn’t had a check-up since that first diagnosis. Again, not the best idea but life happens.

I just finished my junior year in college, and I have had almost non-stop doctors appointments all year. It started after I had some sharp pain in my lower back, and got x-rays to see what was going on. Several doctors appointments and an ER visit later I find out that my scoliosis has gotten significantly worse, and that I have a fractured L5 as well. One thing I don’t see mentioned a lot with scoliosis is that it significantly weakens your spine (usually lower) because your weight distribution is thrown off. I had a job that involved some pretty heavy lifting, and voila fractured L5. 13/10 would not recommend btw.

My curvature (I can’t get consistent answers from doctors) is somewhere in the 20′s in my lumbar region and in the upper 20′s/lower 30′s in my thoracic region. At least with the neurosurgeons I’ve spoken to, they don’t consider you a candidate for surgery until the upper thirties or forties, unless you have significant neurophysiological symptoms. Treatment options vary widely depending on where you live, what you can afford, and what your doctor will give you a referral for, but most doctors will recommend physical therapy off the bat. To my knowledge, most doctors do not recommend bracing anymore, though I think in children that might be different (not so sure on that). So currently, I am waiting on an appointment with a pain management specialist and will go from there. 

Even though the curvature in my spine is relatively minor, I still experience significant symptoms. Some of these symptoms include sciatica, pinched nerves in my arms, legs, and back, muscle spasms in my upper back and neck, swelling of my hands and feet, and numbness or pain in my hands and wrists. Also, because my spine curves more in the upper portion of my back, my left lung cannot expand as much as my right lung. This isn’t always a problem, but I get shortness of breath pretty easily, and any respiratory infections make it super hard to breathe properly (pneumonia sucks a butt). There’s also the obvious bit of scoliosis where I stand a little crooked. Another thing I think that not a lot of people know is that how “lopsided” you are can vary from day to day. This doesn’t mean that the curvature is changing day-to-day, but the muscles may be more relaxed or tightened on some days.

So that’s my experience pretty much (bless you if you read all that!). But, to show an example on the opposite end of the spectrum, my friend had (I think) a 30 degree curvature in the thoracic region and 50 degree curvature in the lumbar. He had immediate corrective surgery (I’m not sure exactly what kind) and now aside from the scar on his back and that he looks like a table when he bends over (his words lol i’m not being mean) you would never know. And even weirder, he had no significant symptoms before his surgery aside from occasional sciatica. So your symptoms don’t necessarily depend on the degree of curvature, where the curve is located has a lot to do with it. Typically, more curvature in the upper spine is more painful but that’s by no means always the case.

Ok, so how in the heck does this all apply to writing characters? I promise it does, I’m not just rambling (well, maybe haha).

13 Things to Consider When Writing Characters With Scoliosis:

Their symptoms may vary from day to day. This may mean that some days they can do activities like running or baseball, and other days they can barely type or walk without pain.

They may have no, mild, or severe symptoms, depending on the location and severity of curvature, and other factors.

What is medical care like where they live? Dealing with doctors, neurosurgeons, physical therapists, etc. is just a part of having scoliosis, and very often an incredibly draining aspect. This is especially true if you have anxiety or other factors that make going to the doctor even more unpleasant.

Were they misinformed about scoliosis? Unless you go to someone who specializes in scoliosis treatment, you’re probably gonna get inaccurate information about something. For example, I was told constantly as a kid to watch my posture. Yes, this can have an impact, but more and more research is showing that scoliosis in many cases is influenced more by hormones (especially in teenage years) than posture. There’s also more egregious examples of this, such as a neurosurgery PA who recently told me not to ever use CBD to alleviate pain because it’s a “gateway drug.” This is literally impossible. So for writing, this could translate into frustration or even anger for your character. But it could also make for some funny situations later! I wrote down everything that crazy PA told me and it still makes me laugh from time to time.

Don’t give them a back-breaking job. It will literally break their back lol. I’m not saying they can’t be active, but if someone is impacted by scoliosis on a daily basis they probably aren’t working as a professional wrestler. Or maybe they are, and your story is trying to explain how that works lol

What do they do to manage the pain (if they have it)? For me, the symptoms are typically inflammatory in nature so things like ice, heat, turmeric tea, and anti-inflammatory medications help relieve the symptoms. This is one of those things where getting other viewpoints is good though too!

Is their spine visibly crooked? If so, are they self-conscious about it? This varies a loooot, and may even vary with symptoms. For example, maybe some days when the pain isn’t bad they wear a cute dress that shows their shoulder-blades. But then when the pain is bad, they just want to look like a hobo. I say this from experience lol.

Have people treated them differently because of it (positively or negatively)? Some people may experience bullying if their scoliosis is more visible, especially as a child. They may also be treated differently by adults, who are trying to look out for them, but nevertheless it still makes them stand out from other kids.

Do they make jokes about it? For example, I can be found frequently saying “my spine said yeet!” or “straight spine? idk her” or my personal favorite “my spine is about as straight as I am.” Scoliosis sucks, but living with it you learn to find humor in it too.

Are they going to get surgery for it? I can’t speak on this part since I haven’t had surgery, but I would imagine that there is a psychological aspect to this that you would want to mention for your character, as well as any logistical aspects like finances, dealing with trash insurance companies, etc.

How does scoliosis impact their mental health? This is one of my pet peeves, and it’s entirely founded in a lack of resources and education, so I’m not aiming this at anyone specifically. But scoliosis does impact your mental health, especially if you have pre-existing conditions like anxiety or depression already. It can be incredibly depressing to want to do something as simple as going for a walk, but you’re in too much pain. It can also really impact anxiety. For example, when I found out about my curvature change in college I had one of the biggest anxiety attacks I’ve ever had. There is also the added issue of not being able to breathe properly at times, which can make a panic/anxiety attack much worse (in intensity or duration). Of course, mental health issues can also be exacerbated by the environment you’re in, so that is definitely something to consider for your character.

What was their diagnosis like? What factors impacted their ability to get a diagnosis? Lack of adequate medical care or having crappy insurance is a huge problem, and it makes it really hard or even impossible for some people to get a diagnosis. And for most neurosurgeons or specialized treatment facilities you have to have that diagnosis and referral for them to be able to do anything. There may also be aspects of your character’s home life that prevents them from getting a diagnosis. Do their parents think they’re faking it, or that they just need to sit up straight? Is your character trans, and/or wears baggy clothing? I’ve heard several stories of undiagnosed cases because of this, so it’s something to consider.

Ok, I think this is the last thing (huge huge thank you to anyone still reading this!!). But please, if you’re writing a character with scoliosis, or any chronic issue/disability for that matter, avoid the trope of you’re still beautiful to me/you’re beautiful anyways/I don’t see your disability. Some people might not get what I’m saying here, so let me explain a little. If you have a character with significant scoliosis, to the point it impacts their daily life, and they meet another character (potential friend, love interest, whatever) and this new person grows to love them in spite of their scoliosis/disability, that is a huge red flag. It implies that they are seeing them through a lens of not having the disability, and they love that version of your character. But that is not your character in reality, because your character in reality has a very real disability. In general, just try to avoid the “I don’t see __,” in writing and real life. That could be applied to a disability, or the character’s race, sexuality, etc. In all cases, it dismisses a fundamental part of who that character is, and what experiences have shaped them into who they are. If your character has scoliosis and it has shaped who they are, it is important for other characters to recognize that as well, otherwise they aren’t really seeing that character in their “full glory,” if that makes sense. I’m rambling a bit at this point and I’m sure there’s other posts that make this point better than I have, but the takeaway is just please don’t write scoliosis as “you’re beautiful anyways.” Scoliosis or no scoliosis, it’s just “you’re beautiful.” Full stop. But part of how your character may come to recognize that beauty within themselves, or how others see it within them, may be influenced by their experiences with scoliosis.

Phew, I did not expect that to get so long but it’s a topic I’m passionate about and I haven’t seen information on scoliosis geared towards writers before, so hopefully this will help! Again, a lot of this is based on my own experiences so please do not take any of this as a universal guide to scoliosis, it definitely isn’t. And if I’ve said anything that people disagree with (or even agree with!) or have questions about, I am always open to polite discourse and discussion. :)

I hope that this answered your question some, and if not feel free to let me know! Thank you so much for asking this!

[bassiter2]

hey if any of yall feel like in dire need of medication for shit like depression or anxiety but can’t go find a doctor in person to get diagnosed for whatever reason - anxiety too bad to interact with ppl, depression too bad to feel motivated to do that, don’t have insurance and can’t afford appointment fees, whatever, 

get K Health. 

it’s a free-to-download app and the free features include being able to fill out a very thorough questionaire about your current symptoms of almost any health issue, and recieve a list of possible diagnoses WITH statistics so you actually know what’s most likely. THAT alone is already great as someone with a lot of anxiety that makes me worry i’m gonna have a heart attack every time my chest hurts, but there’s also a membership that’s $19 a month which allows you to have direct conversations with doctors WHO CAN PRESCRIBE MEDICATION. it can be either mailed directly to you or sent to your local pharmacy, and the former is likely to be even cheaper.

not counting the membership, i just paid $10 for a month’s worth of zoloft. i never had to leave my house or even make a phone call, and i don’t have insurance.

you’ll need to show ID and obviously use your legal name and provide the doctor you talk to with all the same kinda information that you would at an in-person office, of course, but it’s so fucking easy. i’m not sponsored by k health or anything, i just can’t believe how easy it was for me to do this and i figure a lot of others could use it.

[godhater]

one of my friends got sent to the er, quarantined, and tested for the virus (I even got pulled aside by my manager because of it since I had spent time with her the day before).

she had been to korea for two weeks right before this. she also has really bad asthma that hasn’t been properly treated in years because she didn’t get health insurance until this year. she hasn’t even had an inhaler since 2017. she did everything right and self-quarantined for a week after arriving back and has shown no symptoms. even the doctors don’t think she has the virus and are just testing her as a precaution and the quarantine is more for her safety than anything else. ofc it’s the best option to be as careful as possible and even if you don’t show symptoms you could be a carrier and give it to someone vulnerable.

however people who had direct contact with her have been really cruel and uncaring. they’ve treated her like she knowingly gave them the plague 🙃 idk i feel like this whole situation has rlly brought out the worst in people. why don’t more people care that so many people go without health insurance and proper care? that a lot of times we don’t have enough space and resources to care for people in hospitals? that subpar care costs more than most people will ever be able to afford? that people can’t afford to take off work when they’re sick or will get fired if they do? that people have to pay for life essential treatments? that people panic buy things they don’t need and leave nothing for the people who do need things? that we have had the methods and the resources to take better care of people and live better but they’re never used because of greed and are only now being exercised because it’s an emergency situation?

there are houses for the homeless and trillions of dollars literally pulled out of thin air. our way of living, specifically as americans, doesn’t have to be reality. i don’t know the theories or have the answers but i hope instead of being selfish and scared this will make more people realize that we can do better by others and ourselves instead of panicking over what we can’t control and only thinking about ourselves :/

[themerriweathermage]

So, this is the night before Selfie Friday for me, and I’m actually posting two pictures because I know that I will forget by tomorrow. 

Probably in a lot of pictures, you, me, and the next door neighbor will notice that I’m not exactly smiling or happy in a lot of these photos. I’m still going to stick to my usual plan, which was to take selfies all throughout the year on Fridays and compile them at the end of the year and post them to Facebook. But truthfully, my mental health could be better. My physical health certainly could be better.

COVID-19 is on a rampage throughout the U.S. right now. The governor of Virginia is hosting almost daily press conferences in order to keep his people updated on the new rules and regulations being posted and updated in response to this virus.

For those of you who don’t know me that well, I work as a nanny. One of my employers is considered to be a healthcare professional and thereby essential and must continue going to work despite the stay-at-home order across the state. Therefore, I am also considered an essential employee. I expressed my discomfort about this matter, I believe, in an earlier post, or perhaps last week. It’s not that I’m uncomfortable going to work; it’s more or less that I show signs of having an immune-compromised system and that I must, I MUST, be careful.

Just a week or so ago, I sent a message in to my PCP expressing concerns over a sore throat and a cough. Yes, COVID crossed my mind. It was more or less the fact that I had swallowed hot coffee wrong and sent myself into a coughing fit that wrecked a mess on top of my spring allergies. The short story is that I’m on antibiotics because I couldn’t breathe to sleep at night. Believe me, getting three hours sleep a night, working 50+ hour work weeks is no fun. I was recommended to quarantine, but the messed up thing is that I actually can’t isolate myself, because I’m just that needed in the household.

As my symptoms taper off, I know that they will still linger as they often do. I do worry about COVID but it’s a nagging thought in the back of my mind, a stark reminder to the reality that, yes, this is happening. The world is panicking around me and I am bleakly calm, watching as the world spins on around me, and knowing that my calm is a facade, that the anxiety of this all is still there, that the grim reminder that anyone around me can carry this, that I could carry this, that I could get sick and if I did that it wouldn’t be pretty for me.

The screwed up thing about this whole thing is, is having healthcare and having insurance and still not be able to fix underlying issues before this whole thing came along to shut things down. It’s the screwy part of our healthcare system, that I can’t afford to fix my chronic underlying issues and now that they warn you not to go into doctor’s offices anymore, I especially can’t go in, because people are sick, because I can’t afford it (not then, not now either despite the gov’t. checks and tax returns). The screwy part of this whole shebang is that I get to go out to go to work, to go to the grocery store or get gas, to get food, or to go home. And despite that being almost every bit my normal routine, something feels off. Something feels off enough to unsettle me.

You probably didn’t come here to hear my unsettled thoughts, but if you’re reading this, you stayed long enough to hear the ending.

It’s more than just staying home and washing your hands. It’s a reminder that there are people out there who are immune-comprised. It’s a reminder that there are people out there who have underlying conditions that could likely be exacerbated by this virus. It’s a reminder that employees are essential and that America is at war with itself over this virus. Issues that have been long touted by those who are more liberal are finally seen the dawn of light. Protect your weak. Protect your elderly. Protect those who cannot protect themselves. 

Signed sincerely,

A person with a compromised immune system, genetic arthritis, and a genetic heart defect exacerbated by stress.

[square-enix]

several months ago i was diagnosed with a mast cell activation disorder. basically what that means is that the cells involved in mitigating an allergic reaction are far more active than in the average person, and the symptoms are basically that of anaphylaxis, except low-grade and chronic. it’s not the same as having a chronic allergy; my nose doesn’t get runny, i don’t get dermatitis, my eyes don’t get puffy. instead, my whole body breaks out in painful, burning hives, my joints swell, it can be hard to breathe, and it can be painful to walk. when untreated, i wind up in and out of urgent care and often completely bedridden. the illness is life threatening. i carry an epi-pen on my person everywhere i go.

three months ago, i started on a treatment that has had success in clinical trials and involves a once monthly shot of a biologic medication. it costs $1600/month. after a very long application process, my insurance covered it. after three months on the medication (which basically gave me my life back), my insurance company informed me that i would need to send them documentation demonstrating that the medication is working for me and apply for renewal within the month. i will also have to do this every six months hereafter. i spent the christmas season drowning in paperwork, and i got my end of it done within a week of being contacted by my insurance company (one form involved monitoring my health over the course of a week, so that was the minimum amount of time i could take). all that was left was for my prescribing doctor to literally sign a single form, and then about 5 days for the insurance company to approve it. at the time, this left about 22 days for all of this to get done.

after contacting this doctor multiple times, i simply cannot seem to get him to sign the form. he appears to never be in the office when i inquire about this. it’s not that he won’t prescribe; he is literally too lazy and/or forgetful to sign it. i have spent hours waiting on the phone/emailing people trying to obtain this signature and i just can’t get it. i now have exactly one week before my next shot of this medication is due. consistently, at this point between shots, my health starts to show signs of deteriorating. even if my doctor sent the form through this very moment, the odds of insurance approving it fast enough are almost nil. if the medication is not covered by next friday, i’m not sure what happens. if i don’t get my shot, i will be very, very sick.

so i have to make a choice: do i keep spending almost all my free time begging people to do the absolute bare minimum to keep my life threatening illness from re-occurring, or do i pay $1600 out of pocket at the same time i have to pay tuition (i can afford to pay for one or the other. not both)? i’m not even sure i will be allowed to pay for it out of pocket if i am waiting on insurance coverage.

i’m 22 and in my final year of university. i’m trying to be competitive for graduate programs or an after-degree. i have 5 courses and a job. my daily commute is about 45 minutes each way. i spend an average of about 5 hours a week on the phone with insurance, emailing health care providers, getting blood tests, seeing doctors, and so on. being sick (even when i’m treated) amounts to a part time job. if i get really sick again, since i’m past the add/drop deadline at school, i might wind up failing my classes if i can’t consistently go to them. all of this would be avoided if someone would sign a piece of paper when i asked.

in a medical setting, bureaucratic negligence = medical negligence. but don’t listen to me, i’m just the annoying brat on the phone with nothing better to do than harass you for a signature.

[faintlyof]

So now that I’ve finished eating those charcoal briquettes  I accidentally made, I just realized...

It’s probably gonna give me indigestion later. :<

I thought about possible carcinogens and if eating two burnt mini pizzas in 5 years would give me cancer and eventually decided that food is food, waste not want not.

But I kind of forgot that my body also kind of goes IBESLOHNGAIHGIBFOOD and then the acid creeps up my throat and there’s already a lot of damage I really can’t afford any more. :/

I haven’t gone to a doctor about it yet because it was just such a pain in the ass in america to get it looked into. It took 8 months to finally see a doctor who would actually look into why speaking and swallowing and breathing was causing me pain. :/ I mean, not saying that the doctors I went to were bad but you know how health insurance is in america. :/ I mean...

Since I had been living in Japan prior, I didn’t have insurance, so first I had to qualify for insurance which took like 2 months. Then I had to go to a general practitioner maybe? So it was  like another 2 weeks from there. Then I had to wait for a referral for an ENT. Another 2 months. But the ENT I was referred to wasn’t covered by my insurance, so they found a different doctor (cosmetic surgery but also ent?) and I had to wait on that referral. Then once I got that referral I had to wait for an appointment because the clinic only offered about 3 ENT appointments a week and there was a 24 person long waitinglist. During all this, I could barely speak at full volume, so I was whispering and mumbling like mad and really just trying to not talk at all. But my throat does this thing where it will...like pinch? Suddenly mid-word and I cannot speak at all if the full pinch happens, I just gotta cough and sputter for a while and drinking water doesn’t really help. Sometimes I can feel the pinch coming and if I stop talking I can avoid it but talking is basically my job sooo.

But yeah, in the end I finally got an exam (yay throat tube cameras!) and a diagnosis and medication! 8 months after arriving in america despite having started the whole process basically the minute I landed. My throat healed up a bit and I could talk again which was great because I had already lined up a new job in Japan, so I got like 3 months worth of medication and came back to Japan stat!

But now my symptoms are sloooowly showing up again. >< I got a pinch during a lesson today and I occasionally cough up little...like...firm pellet things. I don’t know what they are, nobody seems to know but it happened last time too so I assume it’s related.

[yeschaoticsheepstarlightposts]

15 Things You Should Never Do at the Doctor's Office

Think of your happiest relationships, and there is an honest chance all requires open communication, honesty, and trust. That goes for you and your doctor, too. Lie out of embarrassment, and she or he can't treat you. Show up unshowered to a doctor visit, and she or he won't want to. Ghost her too repeatedly, and a break-up is inevitable.

Be a far better partner and you will recover healthcare.

To uncover what to do—and what to not do—at the doctor's office, Eat This, Not That! Health talked to the country's top docs to seek out the #1 things medical professionals say you ought to avoid at a doctor visit. Read on. Your life depends thereon.

1 Never Be a Passive Listener Nurse Showing Patient Test Results On Digital Tablet Shutterstock Becoming a lively listener, not a passive one, is the No. 1 thanks to being a far better patient, say doctors Mikkael Sekeres and Timothy Gilligan of the Cleveland Clinic. They revealed within the NY Times that too many of their patients nod mechanically at what they're saying, without fully understanding the knowledge being relayed.

The Rx: Asking questions, requesting that the doctor repeat something, taking notes or bringing along a loved one who can do any of the above can assist you to become a life partner in your care.

2 Never Show Up With a Self-Diagnosis and Tell Your Doctor What to try to the patient is angry on doctor due to medical error Shutterstock There's a fine line between a lively listener and being a know-it-all. Consult Google to self-educate, not self-diagnose, says Suzanne Koven, a medical care internist at Massachusetts General Hospital. "I have enormous respect for patients' autonomy and understanding of their bodies, and to some extent, doctors are working with patients during a collaboration," she told Scientific American. "But to pretend that both parties are bringing the identical degree of data to the table is disingenuous. Once during a while, somebody will are available determined that they have an MRI to rule out such and such or this drug to treat such and such, and I'll need to say, 'Whoa, slow down, let's mention you and your symptoms.'"

The Rx: Do your research. Ask questions on anything you do not understand. But leave the diagnosis to your doctor.

3 Never Lie female holding fingers crossed behind her back Shutterstock According to a survey conducted by ZocDoc, almost one-quarter of individuals mislead their doctors. (Women were slightly more likely to love, at 30%, compared to 23% of men.) Embarrassment and fear of being judged were the foremost common reasons given. Stop it right now! "Sugar-coating bad habits or nagging symptoms doesn't help," advises David Longworth, MD, of the Cleveland Clinic. "Your doctors are confidential partners in your care. they have all the knowledge available to assist you to create smart decisions. that has everything from your habits to each medication you're taking, including over-the-counter drugs, herbal products, vitamins, and supplements. If you are not consistently taking medication, ask your doctor about why — including if you cannot afford them."

The Rx: Always be candid. Anything less may be a waste of your time. Leave embarrassment and shame behind. Your doctor is there to enhance your health, not nag you.

4 Never Leave Things Out Man writing at the desk Shutterstock According to the ZocDoc survey, 64 percent of seniors said they've avoided mentioning health issues with their doctor because they didn't think the matter was that serious or worth discussing. None folks want to perform a hypochondriac's soliloquy at the doctor's office, but it isn't the time for false modesty either.

The Rx: If you think that you would possibly get tongue-tied within the moment, write down your symptoms or things you want to debate together with your doctor before your visit.

5 Never Be Late Asian businesswoman watching the watch time worried and scared of getting late to the meeting Shutterstock Remember the last time you sat during a lounge, doing what space was for, for an hour? That's likely because people before you were late for his or her appointments, backing up the entire queue. Reinforcing this little bit of sense may be a doctor who posted on Reddit: "Every outpatient office has time put aside for sick visits, and time blocked off for pre-scheduled visits," wrote _PyramidHead_. "People will often call in when the office opens and invite a sick visit to deal with their pharyngitis, whatever. More times than I can count, the person will say, 'I can't are available until 4:30,' usually the last slot of the day. Which is ok, but once they then don't show up, I'm annoyed. Especially if the last pre-scheduled visit was as 3:15, and that I waited around for an hour — only to possess someone not shows up."

The Rx: Keep your appointments and get on time. Or call to let the doctor's office know what is going on on.

6 Never Be a Jerk to the office Aggressive man yelling at the nurse in the clinic Shutterstock Don't make a scene at the front desk about wait times or rant a few charges mandated by your insurance. "Complaining to the front office about your copay is pointless; they need no control over that," wrote Redditor _PyramidHead_.

The Rx: Be proactive: Call ahead to ascertain if the office is running behind if you would like to, stay informed about insurance features like your deductible, and skim #8 on this list.

7 Never Show Up Unshowered man is taking shower in the bathroom Shutterstock This one's sense (and common courtesy). Unfortunately, judging from postings by medical staff on social media, it's an all-too-common occurrence. Remember when mom asked if you were wearing clean underwear, just in case you were during an accident and ended up in a doctor's care? Mom was right.

The Rx: you do not need to prep like it is a date, but be clean.

8 Not Know What Your Insurance Covers Older patient at woman doctor office paying exam with MasterCard Shutterstock It's near rock bottom of the list of last things any folks want to do: Spend time on the phone with the insurance company. But if you're having a procedure, need medical devices, or are prescribed new medication, it's better to call ahead and sign up than be caught with a bill — and need to spend longer on the phone — after the very fact. If you would like a colonoscopy, the procedure could be covered, but not a specific facility or anesthesiologist.

The Rx: Call ahead to see. If you've got concerns, tell your doctor.

9 Not Know What Medications You're On female physician prescribing pills to an older black male patient Shutterstock This is a frequent complaint voiced by doctors and other medical professionals. If you're seeing a replacement doctor who won't have access to your records, he or she won't mind in the least if you bring along a cheat sheet together with your meds listed. It could prevent drug interactions and large problems down the road.

The Rx: jot your medications and dosages and convey the knowledge along to your doctor visit, or keep it on your phone.

10 Never Ignore Medication Instructions woman takes medicine capsules Shutterstock Always take medication as prescribed. Failure to try to do so is one of the highest complaints medical professionals voice on social media. On Reddit, a doctor going by the nickname AstralResolve explained their frustration with a standard scenario: "' I stopped taking the antibiotics cause I began to feel better. Now I'm sick again and therefore the antibiotics aren't as effective.' Every freaking time. We instruct you disregard, bugs get stronger and more resistant."

Redditor walrustude, a doctor, said noncompliance supported online research was his top gripe: "Straight up refusal to follow medical advice or to comply with taking one pill each day known to dramatically improve symptoms, all because this mommy blog said the simplest thing is apple vinegar or because WebMD suggested cold showers." Your doctor doesn't mind questions supported your research; just don't present them with something you read online as the incontrovertible fact that applies to your particular case.

The Rx: Follow prescription instructions to the letter, and voice any concerns to your doctor.

11 Never Conceal that you've got Stopped Taking Your Medication hand-throwing pills away Shutterstock This is another frequent occurrence, medical professionals say. "People stop taking medications all the time, actually because they feel better or can't afford the value. it is a chronic situation, especially as Americans grow old," writes aging expert Barbara Hannah Grufferman on HuffPost. Remember #3 and #4 on this list — a doctor's visit may be time for total honesty. Anything less is counterproductive.

The Rx: Tell your doctor everything. If finances are a problem, be blunt. (Your doctor or office could also be ready to help with co-pay cards or other solutions.)

12 Never Get Too Many Second Opinions female physician checking male patients vital sign at clinic Shutterstock A second opinion is great. A fifth, not such a lot. "I'm an enormous fan of second opinions," Orly Avitzur, MD, wrote in Consumer Reports. "I encourage my very own patients to hunt them out when faced with a difficult diagnosis or decision, and I have provided them also. But there is a limit. A recent patient was par­alyzed by indecision after seeking several medical opinions (I was number seven), all with slightly different recommendations. Medicine frequently involves judgment calls, and sooner or later you will have to trust one among them."

The Rx: Know when to mention when. More information isn't better.

13 Never Bring Relatives Along Who Take Over the Conversation Couple Attending IVF Consultation Shutterstock "While I do not yet bring anyone into my doctor's appointments, I do accompany both my mother and mother-in-law to theirs," says Grufferman. "They are 75 and 83, respectively, and the second set of ears and eyes is usually an honest thing, especially when the doctor is discussing procedures, medicine, and follow-up recommendations. during this case, I think physicians welcome my presence, as long as I do not completely take over. I always take notes and ask the doctor to repeat or review something if I do not understand."

The Rx: Ask well-meaning relatives who come along to your doctor visit to try to more listening than talking.

14 Never Be a No-Show Missed call phone from someone via mobile smartphone while Asian man sleeping on the bed in the late morning Shutterstock "Not only isn't exposure once we were expecting you (and once we have called, texted, emailed, and sometimes all three to remind you that you simply have an appointment) rude and entitled, it also tells me that my time invaluable, which somehow you think that you probably did not need to keep what essentially was a contract that you simply made with me once you made the appointment," writes California physician Rebecca Levy-Gantt during a piece on Medium titled "How to be an honest Patient".

The Rx: If you cannot make your appointment, always let the doctor's office know.

15 Never Ask Your Doctor to Lie A medical doctor making a negative sign for medicine by his finger. Doctor showing forbidden sign Shutterstock This is an enormous no-no. "Sometimes patients will inquire from me to travel back and 'code the visit differently,'" says Levy-Gantt. "I won't change the test codes or the visit codes to accommodate someone, since doing so is a fraud and not an appropriate or legal thing on behalf of me to try to to. Sorry. I will, however, attend bat for a patient (and I have) if I feel a patient needs a specific test done, and therefore the insurance firm denies it."

The Rx: Don't ask your doctor to cheat the system. It's unethical, and do not you would like a physician who's honest in the least times?

[x--daughters-of-darkness--x]

How Kobra And The Lotus Vocalist Kobra Paige Overcame Her Hellacious Battle With Lyme Disease

The Kobra And The Lotus vocalist opens up about her years-long battle with Lyme disease after a tick bit her on a hike.

Forceful, empowered, unstoppable: all of these words spring to mind when one and listens to and watches Kobra Paige, the founder and lead singer of Canadian power metal outfit Kobra and the Lotus. Kobra has led the band on an almost non-stop touring schedule since 2010, not to mention spending time on the road as a guest vocalist for Kamelot and the Metal All-Stars supergroup. In that time Kobra and the Lotus have recorded six records and an EP, including their upcoming album, Evolution. So it’s unsurprising that the singer comes across as a person with a seemingly bottomless well of energy and stamina.

However, behind the scenes, Kobra suffered for years with Lyme disease, and the debilitating, sometimes invisible illness sapped her strength and also provided lyrical fuel for some of her most potent songs.

Kobra grew up near Calgary, Alberta as part of a family of avid hikers, and hiking remains a serious part of her life. “I’m like a half-breed, I love the city, and I also love nature,” she says of her upbringing. “I grew up with both.” She’s taken several backpacking trips, sometimes at the end of a long tour, including a trip through Romania, as well as Spain’s historic Camino de Santiago. On one such hike, Kobra was bitten by a tick and contracted Lyme.

She first noticed symptoms of the disease in 2014, when Kobra and the Lotus were on tour with KISS. “I started getting really ill. I started getting infections, catching everything that everyone had; I couldn’t fight anything off,” she recalls.

Lyme disease is a still little-understood bacterial infection that can present itself in a multitude of ways, including fevers, fatigue, chronic pain, memory loss, muscle spasms, facial paralysis and more — none of which can be easily overlooked for a touring musician. Worse, Lyme sometimes causes dysphonia, involuntary spasms in the larynx. Dysphonia as a result of Lyme disease kept musicians like Shania Twain and Avril Lavigne from performing live for years.

Kobra managed to escape dysphonia, but her infection proved difficult to treat and caused severe fatigue. “I used to always being really strong, physically, but [Lyme disease] manifests in different ways for different people, and for me, it was very physical,” Kobra says.

While being treated with antibiotics, she toured the UK. She recalls: “I was so chronically fatigued to the core. We would get to a hotel room, and I could barely make it in. I would pass out on the bed, fully clothed.” After that tour, in 2015, Kobra’s doctor recommended an eight-month break from touring.

In the fall of 2015, with the bacteria still present in her system, Kobra toured as a guest vocalist with Kamelot on their North American Haven tour. Though she was on a heavy dose of oral antibiotics, she suffered from muscle spasms which would sometimes tear her muscles. She describes that tour as “a physical battle every day.”

After that tour, she was tested again and the number of bacteria in her body has grown “tenfold.” The bacteria had developed a resistance to the antibiotics she had been taking. The band canceled all their touring plans, and her doctor prescribed a regular, intravenous dose of antibiotics, something that could not be accomplished on tour. She checked into a treatment facility in Arizona, by herself, thousands of miles from her home in Calgary. There, she was treated nearly eight hours a day, for five days a week. She recalls other patients showing up in wheelchairs, unable to walk until six weeks of antibiotic pummeling. “That was not a fun eight weeks,” she recalls. “But I did have a remarkable turnaround after I was treated aggressively.”

Kobra’s experience was unusually severe. Most people can defeat Lyme disease with a dose of antibiotics if diagnosed relatively quickly. “If you don’t catch it or people don’t take it seriously, it can show up in a horrible way, and it can compromise your immune system down the road and return,” she says.

However, Kobra is lucky to have been able to afford the clinic in Arizona. For those near the poverty line, such treatment could sink them into bankruptcy. “I’m really grateful and lucky I could get the treatment. I feel bad for people that can’t because it’s very costly and insurance doesn’t cover it.”

The treatment didn’t stop Kobra from recording and releasing two albums, Prevail I and Prevail II, in 2017 and 2018, though she did have to return for an additional three weeks of treatment in 2017. She was only — finally — declared in remission in July of 2018.

Even so, some of the symptoms of Lyme disease can persist for years, even after successful treatment. And because of the often internal, subjective nature of these symptoms, Lyme disease has been sometimes called an invisible illness, leading some in the medical community has considered some of these symptoms to be psychosomatic.

“It’s brutal when doctors tell you it’s psychosomatic,” Kobra says. “My sister and mother also had Lyme disease, and in my sister, it was very neurological. She was bedridden in her early 20s.” She recalls a doctor speaking to a nurse outside her sister’s hospital room intimating that he didn’t believe in her condition. These stories are not uncommon, as Lyme disease remains a little-understood medical condition even in many medical circles. Historically, many infected with the disease have gone with insufficient treatment for years after not being taken seriously. “I don’t know what I would do if I didn’t have my family believing in me. Fortunately, we are all supporting one another.

Kobra’s extended experience did come with one small silver lining — it influenced and changed her lyrical perspective. “What I was going through really shaped the lyrics of Prevail I and II. Many of those songs are about a struggle. It was the first time that I became vulnerable and forthright with my lyrics rather than sharing a message through a story,” she says. That forthrightness carries over into the upcoming Evolution, her most direct and stripped-down record to date.

As of now, Kobra is experiencing no further symptoms, and Kobra and the Lotus are on tour with Sebastian Bach. The singer has no plans to take any other extended breaks or taking her own health lightly.

“All I know is I am better too now that I’ve been treated,” she says, adding “I wish there was more attention brought towards it so that we could do more research.” Kobra feels Lyme disease will be ignored the way HIV was in the 1980s until it reaches epidemic proportions. “I’m not the only artist out there that’s been public about it. I think changes are slowly happening, just like everything else.”

The range of Lyme disease-carrying ticks continues to expand. Meanwhile, she’s doing anything she can do to raise awareness about the vexing illness that sidelined her for so long and showed her the future direction for her band.

[randomslasher]

ADHD and autism have some similarities, but I'd say it's probably good to exercise caution towards self diagnosis of either, for anyone. I just say that because I see a lot of people without ADHD be like "oh I do that thing sometimes so everyone has it a little" and as someone with ADHD it's definitely frustrating, and I see people do it with autism sometimes and I imagine it's frustrating to autistic people. You just gotta be careful with self diagnosis, is all.

I have been diagnosed with ADHD, anon, which is why I laid claim to it. I also did not say I was autistic, only that I have seen things about it in my reading that feel familiar. I’ve also seen lots of things that don’t fit, which is why I haven’t unequivocally said “yes that’s me,”--only that I see it as a possibility. 

However, I do disagree with you a little on the benefits of self-diagnosis. Assuming everyone has the means or resources to be officially diagnosed with something is fallacy. Many people can’t be diagnosed, and many people can’t afford the fallout if they are. 

Example: I cannot donate blood. I used to donate as often as I could, because I like helping people and it was something I could do. I also have a blood type that’s often in demand (0 positive --not quite as in demand as 0 negative, but still useful). 

However, I had two screenings come back with a positive reading for the Hepatitis B Core Antigen, a sign that I could possibly have HepB (unlikely, as I’ve actually been vaccinated against it). 

Now. Chances are, it’s a false positive. Those tests are notorious for coming up with them. And I could go to the doctor, pursue the issue, and come back to the blood bank with a clean bill of health and the ability to donate blood again. 

But here’s the other side of that coin: there’s a chance I might have Hep B. If I do, I’m completely asymptomatic, so it is not impacting my life right now in any way. I do not benefit from a diagnosis. 

However, a diagnosis could cause me a good deal of detriment. My insurance premiums could go up. I could get denied coverage for things. I could get labeled a ‘risk’ for things I not really a risk for. And there’s social stigma attached to certain diagnoses, too. 

Now, back to ADHD/Autism. Yes, I definitely do understand it can be frustrating to see people on tumblr appearing to make light of conditions that are very real and very stigmatizing for those who have them. But telling someone that they can’t identify their own experiences without the help of a Professional Diagnosis is a little bit...I dunno, insulting to them? People know what they’re going through. If someone sees a list of experiences and symptoms that feel absolutely spot on for their experiences, there’s a very good chance they’re right. And as often as people with these disorders get overlooked or misdiagnosed, I’m not sure I share your faith in the medical community’s ability to identify these conditions, particularly when they present themselves in uncommon ways. 

Bottom line, people know their own bodies, they know their own experience, and it behooves us to listen to them, even if they didn’t or couldn’t get a fancy official stamp from a doctor. 

(And as someone who has been misdiagnosed and had symptoms overlooked for a number of the chronic conditions I have, this is a bit of a sore spot for me, so if I sound a bit harsh I apologize. But I literally had to figure out my endometriosis on my own and ask for treatment--which worked, btw--after two completely useless doctor’s appointments and one very expensive trip to the ER that showed nothing. Medical diagnoses are great, when they work, but there are a hell of a lot of biases in the medical community that prevent them from working, a lot of the time, and it’s good to stay cognizant of that.)

[michipeachiii]

A Good Old Fashioned Vent

Do you want to hear about my latest breakdown? No? Well strap in buckaroo. 

My disability is the source of countless panic attacks and tonight is no different of course. 

I don’t have neurologist or pain management doctor so my disability is ill-managed.

A lot of doctors in my area refuse to see me because I have a lawsuit pending (Still don’t know how this is legal but go off I guess, deny me medical care, and yes I’ve checked with the hospital and insurance and doctors are allowed to deny you care if there’s other doctors in your area, they don’t have to make sure you can actually get to someone else that’s my issue to deal with so I’m just stuck in medical purgatory)

Any other doctors refuse to treat me because 

they don’t take half of my insurance (I’m on an HMO) or any of it

they require me to be a patient at their hospital, requiring me to drop my primary care doctor and she’s too precious to give up right now

Or they’re far too far away from me and I can only travel so far by myself without putting myself in danger or causing a terrible flare or I literally can’t afford it

vertigo and trains don’t mix

brain fog so bad I forget where I am or where I’m going. I have forgotten my name before. 

flares that literally leave me bedridden

My rheumatologist (the only doctor treating my disability currently) is severely overbooked and I have to wait another 3 months to see him. Last time I saw him was February. My medications (all four of them) run out in May. Figure out the math on that. 

I’d be lying if I said I haven’t thought twice about taking my medication because what if I can’t get any more meds until July... and trust me it’s a real possibility 

I was supposed to be in physical therapy since mid February but they’re so overbooked that I still haven’t been called for physical therapy. May is next week. 

if we can fix my hip we might be able to improve my pain and mobility but we can never test that theory out if I never actually see them :))))

I haven’t had an epidural in over a year and it shows in my mobility and pain levels (see point one)

I’m overdue for (I’m supposed to have these tests done on at least a yearly basis to properly track my disability and keep tabs on any progression.)

4 MRIs (back, neck, hip, brain)

A VNG (to track my vertigo)

An EEG (to track brain activity, my symptoms cause doctors to have to rule out seizures and epilepsy, yes really)

More fun facts

I’m still waiting to hear back on my disability appeal

I don’t qualify for a lot of help or services because I don’t receive disability benefits (In order to receive these services it specifically states that you need to be receiving benefits to receive aid, and be able to travel.)

I don’t have money to travel. Traveling causes terrible flares. 

I’ve been trying to get benefits for over 4 years

I’m still waiting to see if my lawsuit goes anywhere lmao 

Even more fun facts

This is clearly all great for my mental health :) (sarcasm)

TLDR; 

this city is overcrowded and its practically impossible to get proper and timely medical care

being denied disability also prevents me from getting any additional assistance

medical purgatory

How on earth am I supposed to get myself into a better state of life if I’m constantly being denied the opportunity to do so? I’m being denied care from 4 out of 5 specialists I need to manage my disability and I’m supposed to be fine somehow? My mental health would be better than it is right now if I could at the very least get access to the medical care I need. Less pain, better brain. 

I feel like I’m oversimplifying things but like, if I got to see all of my specialists regularly I’d be relatively fine. I’d still be disabled obviously but I’d at least be taken care of and actually have healthy ways to cope and manage my condition.  

This isn’t even touching on my home situation which is its own giant mess and equally distressful. 

Honestly I sugar coat a lot of the shit I deal with because I don’t want to sit here and throw a pity party for myself but also holy shit I need to vent somehow, somewhere at some point because a human can only take so much bullshit at once. It feels like I’ve exhausted all my options at this point. I don’t know what else to do. I don’t know how else to help myself. I just feel trapped.  

[ellcrys]

“We are encouraged to strategize and scheme to find places, times, and roles where we can be effectively put to work,” Harris, the Kids These Days author, writes. “Efficiency is our existential purpose, and we are a generation of finely honed tools, crafted from embryos to be lean, mean production machines.”

Burnout isn’t a place to visit and come back from; it’s our permanent residence.

This is a super long article but so worth the read.

The part that definitely resonated with me the most was the part on self-optimization. I can see this shit reflected in my daily habits and mindset. If I’m not being ‘productive,’ I’ve not had a good day. Every single part of my schedule is dictated by crossing things off my to-do list and what I’ve been able to accomplish. I’ve known this to be unhealthy since day 1 but couldn’t/can’t reverse the mindset. And now I get why.

Some great quotes below.

Topics that hit home for me in order of appearance:

On Branding:

“Branding” is a fitting word for this work[1], as it underlines what the millennial self becomes: a product. And as in childhood, the work of optimizing that brand blurs whatever boundaries remained between work and play. There is no “off the clock” when at all hours you could be documenting your on-brand experiences or tweeting your on-brand observations. The rise of smartphones makes these behaviors frictionless and thus more pervasive, more standardized. In the early days of Facebook, you had to take pictures with your digital camera, upload them to your computer, and post them in albums. Now, your phone is a sophisticated camera, always ready to document every component of your life — in easily manipulated photos, in short video bursts, in constant updates to Instagram Stories — and to facilitate the labor of performing the self for public consumption.

On Self-Optimization[2]:

Even the trends millennials have popularized — like athleisure — speak to our self-optimization. Yoga pants might look sloppy to your mom, but they’re efficient: You can transition seamlessly from an exercise class to a Skype meeting to child pickup. We use Fresh Direct and Amazon because the time they save allows us to do more work.

This is why the fundamental criticism of millennials — that we’re lazy and entitled — is so frustrating: We hustle so hard that we’ve figured out how to avoid wasting time eating meals and are called entitled for asking for fair compensation and benefits like working remotely (so we can live in affordable cities), adequate health care, or 401(k)s (so we can theoretically stop working at some point before the day we die). We’re called whiny for talking frankly about just how much we do work, or how exhausted we are by it. But because overworking for less money isn’t always visible — because job hunting now means trawling LinkedIn, because “overtime” now means replying to emails in bed — the extent of our labor is often ignored, or degraded.

The media that surrounds us — both social and mainstream, from Marie Kondo’s new Netflix show to the lifestyle influencer economy — tells us that our personal spaces should be optimized just as much as one’s self and career. The end result isn’t just fatigue, but enveloping burnout that follows us to home and back. The most common prescription is “self-care.” Give yourself a face mask! Go to yoga! Use your meditation app! But much of self-care isn’t care at all: It’s an $11 billion industry whose end goal isn’t to alleviate the burnout cycle, but to provide further means of self-optimization. At least in its contemporary, commodified iteration, self-care isn’t a solution; it’s exhausting.

On “The Double Shift”:

Millennial burnout often works differently among women, and particularly straight women with families. Part of this has to do with what’s known as “the second shift” — the idea that women who’ve moved into the workplace do the labor of a job and then come home and perform the labor of a housewife[3].

The labor that causes burnout isn’t just putting away the dishes or folding the laundry — tasks that can be readily distributed among the rest of the family. It’s more to do with what French cartoonist Emma calls “the mental load,” or the scenario in which one person in a family — often a woman — takes on a role akin to “household management project leader.” The manager doesn’t just complete chores; they keep the entire household’s schedule in their minds. They remember to get toilet paper because it’ll run out in four days. They’re ultimately responsible for the health of the family, the upkeep of the home and their own bodies, maintaining a sex life, cultivating an emotional bond with their children, overseeing aging parents’ care, making sure bills are paid and neighbors are greeted and someone’s home for a service call and holiday cards get in the mail and vacations are planned six months in advance and airline miles aren’t expiring and the dog’s getting exercised.

On “Adulting”:

“The modern Millennial, for the most part, views adulthood as a series of actions, as opposed to a state of being,” an article in Elite Daily explains. “Adulting therefore becomes a verb.” “To adult” is to complete your to-do list — but everything goes on the list, and the list never ends.

That’s one of the most ineffable and frustrating expressions of burnout: It takes things that should be enjoyable and flattens them into a list of tasks, intermingled with other obligations that should either be easily or dutifully completed. The end result is that everything, from wedding celebrations to registering to vote, becomes tinged with resentment and anxiety and avoidance. Maybe my inability to get the knives sharpened is less about being lazy and more about being too good, for too long, at being a millennial.

On Errand Paralysis:

There are a few ways to look at this original problem of errand paralysis. Many of the tasks millennials find paralyzing are ones that are impossible to optimize for efficiency, either because they remain stubbornly analog (the post office) or because companies have optimized themselves, and their labor, so as to make the experience as arduous as possible for the user (anything to do with insurance, or bills, or filing a complaint). Sometimes, the inefficiencies are part of the point: The harder it is to submit a request for a reimbursement, the less likely you are to do it. The same goes for returns.

Other tasks become difficult because of too many options, and what’s come to be known as “decision fatigue.” I’ve moved around so much because of my career path, and always loathed the process of finding family practitioners and dentists and dermatologists. Finding a doctor — and not just any doctor, but one who will take your insurance, who is accepting new patients — might seem like an easy task in the age of Zocdoc, but the array of options can be paralyzing without the recommendations of friends and family, which are in short supply when you move to a brand-new town.

Other tasks are, well, boring. I’ve done them too many times. The payoff from completing them is too small. Boredom with the monotony of labor is usually associated with physical and/or assembly line jobs, but it’s widespread among “knowledge workers.” As Caroline Beaton, who has written extensively about millennials and labor, points out, the rise of the “knowledge sector” has simply “changed the medium of monotony from heavy machinery to digital technology. … We habituate to the modern workforce’s high intensity but predictable tasks. Because the stimuli don’t change, we cease to be stimulated. The consequence is two-fold. First, like a kind of Chinese water torture, each identical thing becomes increasingly painful. In defense, we become decreasingly engaged.” My refusal to respond to a kind Facebook DM is thus symptomatic of the sheer number of calls for my attention online: calls to read an article, calls to promote my own work, calls to engage wittily or defend myself from trolls or like a relative’s picture of their baby.

To be clear, none of these explanations are, to my mind, exonerating. They don’t seem like great or rational reasons to avoid doing things I know, in the abstract, I want or need to do. But dumb, illogical decisions are a symptom of burnout. We engage in self-destructive behaviors or take refuge in avoidance as a way to get off the treadmill of our to-do list. Which helps explain one of the complaints about millennials’ work habits: They show up late, they miss shifts, they ghost on jobs. Some people who behave this way may, indeed, just not know how to put their heads down and work. But far more likely is that they’re bad at work because of just how much work they do — especially when it’s performed against a backdrop of financial precariousness.

Footnotes:

[1] For many millennials, a social media presence — on LinkedIn, Instagram, Facebook, or Twitter — has also become an integral part of obtaining and maintaining a job. The “purest” example is the social media influencer, whose entire income source is performing and mediating the self online. But social media is also the means through which many “knowledge workers” — that is, workers who handle, process, or make meaning of information — market and brand themselves. Journalists use Twitter to learn about other stories, but they also use it to develop a personal brand and following that can be leveraged; people use LinkedIn not just for résumés and networking, but to post articles that attest to their personality (their brand!) as a manager or entrepreneur. Millennials aren’t the only ones who do this, but we’re the ones who perfected and thus set the standards for those who do.

[2] One of the ways to think through the mechanics of millennial burnout is by looking closely at the various objects and industries our generation has supposedly “killed.” We’ve “killed” diamonds because we’re getting married later (or not at all), and if or when we do, it’s rare for one partner to have the financial stability to set aside the traditional two months’ salary for a diamond engagement ring. We’re killing antiques, opting instead for “fast furniture” — not because we hate our grandparents’ old items, but because we’re chasing stable employment across the country, and lugging old furniture and fragile china costs money that we don’t have. We’ve exchanged sit-down casual dining (Applebee’s, TGI Fridays) for fast casual (Chipotle et al.) because if we’re gonna pay for something, it should either be an experience worth waiting in line for (Cronuts! World-famous BBQ! Momofuku!) or efficient as hell.

[3] (A recent study found that mothers in the workplace spend just as much time taking care of their children as stay-at-home mothers did in 1975). One might think that when women work, the domestic labor decreases, or splits between both partners. But sociologist Judy Wajcman found that in heterosexual couples, that simply wasn’t the case: Less domestic labor takes place overall, but that labor still largely falls on the woman.

[thatblondeperson]

Most people live in expensive states though? I’m hearing you but are you hearing me? I said very literally exactly that I wasn’t saying it wasn’t tough for you. But it could be worse. OP’s situation is worse than yours. So are many other peoples. If you had onset, severe pain that scared you would you go to the hospital? Taking your hypothetical diabetes into account, if you developed adult type one diabetes and felt the symptoms, you have 7k in the bank and insurance and it sucks, and it’s not nothing, but you go and get it checked out because you’re worried for your health. There are people out there that don’t have that option, not because they would whittle down their savings, but because their savings is less than the initial appointment and they can not. It’s not “policing your privilege” (???) to point that out. Living scared of something in your own body that may be slowly, may be quickly killing you, may be a building up problem that will loose you your knees or your teeth that you can’t do anything about, even you wanted to, if it were the “rainy day” your savings are meant for. Obviously the enemy is the system. Obviously. But you’re defending your right to complain….. by attacking someone else’s complaint.

I said in my original reblog that OP was valid in their complaint, but that doesn't invalidate people disagreeing heavily with them.

Their initial post was extremely vague and did ostracize a lot of people.

They amended it by saying it was only directed at people who were abled and could afford to go, as if that means that those people also have no right to complain.

I deeply feel for anyone who cannot even consider the hospital as an option, and the system is fucked up for causing that.

Understand that that scenario YOU posed is not just isolated to people who don't have health insurance.

I just don't like that for some reason you decided that 7k made me unable to fear for my financial state. Just because I can take myself to the hospital sometimes, doesn't mean I always can. Funds change month to month.

And yeah, a lot of states are expensive, but one Google search should show you that California's cost of living is RIDICULOUS, so if for some reason you think 7k is a fabulous amount here, more power to you. I even stated in this last ask that right now I'm doing marginally fine, and I have privilege for 1000 reasons obviously, holy hell do I have privilege. But in the US, almost no one is 100% privileged when it comes to medical issues. Healthcare should be a basic human right, no one should have to worry about not going to the hospital.

I am not discrediting those who do not and cannot have insurance, not at all. That initial post felt very narrow to me and plenty of others in the replies, so I answered it. Feel free to disagree with me as I have with OP.

Personally I'd like the system to change, but I guarantee you, even if we all got free health care tomorrow, people would still complain about going to the doctor.

[bhc89]

Yet another example of how much of a cruel joke the American healthcare system is

A little bit of an introduction. I’m a 32 year old mother. I was diagnosed with Crohn’s Disease in 2017 (symptoms started in 2016). Because of my struggle with Crohn’s I applied and got on disability. And with disability I ended up on Medicare. Then since I was on Medicare (with Part D Humana Prescription) and Medicaid, this year I ended up on Aetna Better Health Premier Plan (MMAI). Problems pretty much started in the beginning. I could get into that but it would be a really long rant before getting into the current BS that prompted this post.

I’ve been on a medicine called Sulfasalazine extended release since 2018 (I believe) which has kept me in remission and out of the ER for the most part. Some time last year (2020) I got a call from my doctor or pharmacy telling me they were running out of my medication and unable to get it stocked. They advise me to try another pharmacy to see if they had it. I had them transfer the prescription to Walmart cause it sound like they had some. I got a call from them and they told me they were also struggling to get it in so off to Walgreens went my prescription. Hallelujah, they had some. I had my meds for a couple months, but eventually they couldn’t get it either. I had to call one or two times while they scrounged to get some and one of the calls the pharmacist told me they had at least enough for a refill and they’d ship it to me. I never got it. I wanna say in the mean time, CVS was waiting to see if they’d ever get any in. They didn’t see getting any in the future so they called my doctor and told him they had and could still get the standard one, which was the same as what I was on just instead of taking two pills three times a day, I take one four times a day. No biggie and I was on that from that moment on until this month.

Now, they can’t even get the standard release Sulfasalazine. Next meds is called Pentasa. Sounds great. Well, my insurance didn’t want to cover them. So, my pharmacy sent something for my doctor to beg the insurance to cover them. They sat in a kind of limbo on the app for awhile (status labeled on hold). I called my doctor for an update when I was getting to the end of my sulfasalazine. I got his nurse who had no clue what status was on the meds. Her recorders were showing they didn’t have the form or whatever for the doctor and I needed to call the pharmacy to send that paperwork to get it through and there wasn’t really much she could do. Sorry. Right away I called the pharmacy and yeah they sent the paperwork or whatever and the doctor got it sorted out. I can have my meds, they are covered, and we’re just waiting for them to come in so it can filled and I can get the order for delivery. Awesome. I got them Friday (Nov 19), finished my last day of Sulfasalazine, and began taking them Saturday; four capsules four times daily. Today, I got not one but two calls from Aetna (first one went to voice mail because I didn’t know the number) and I “spoke” to an interactive recording (”please say or punch the numbers of your birthday with two numbers for the month, two numbers for the day, and four numbers for the year”) which told me that Aetna has denied covering my new medication. I will receive a letter with all the information about their decision including how to appeal if I feel I really need this medication. I can take it to the doctor to go over it and work out the appeal. I guess they’re covering the first month but my doctor and I will have to work to keep me on them. If I can’t stay on them that means I’ll have to change meds again. I don’t know what tho. I tried to get Remicade a couple years ago. In fact that’s how I got on Sulfasalazine. The insurance wouldn’t let me have it cause they have this whole process of you have to be on this and this and this before that and if all of those this’s don’t work then I suppose we’ll let you have that (my daughter went through the same thing). And there is no way in Hell I can afford the retail price of $1717.99 USD a month! At the same time I’m waiting to find out if I’m still disabled under the government's definition.

If you took the time to read through all this, thank you. When I told my family my mom felt it needed to be put out there, that people needed to know. And I all I can think is how my situation is what one of the thousands... millions?... many, many that are out there. It’s just gonna to get buried and ignored because this is nothing new. I suppose it’s good that I’m getting it out and hopefully let others know that no, no you’re not alone. I’m also considering writing to the governor about how ridiculous this is that me and my doctor have to beg to get me medication that prevents any more blood loss and horrible pain among other more personal symptoms and keeps me out of the ER or staying in the hospital, and needing any more transfusions.

Thanks again for reading. I welcome reblogs and sharing to other platforms

--Nov 21 2021--

[gncrevan]

i said i'd make this its own post; so anyway some thoughts i would like you to consider when judging @skagra3482 's fundraiser/condition:

what stands out to me is that nobody ever produces conclusive evidence that angie is scamming. all you have is some doubts and rumours that have been addressed by her before. you’re absolutely correct that she has been raising funds for a long time, yet somehow nobody has been able to find any evidence she is a fake. it hasn’t turned out that she used someone else’s pictures, no relative or friend has come out to say her story isn’t real (in fact everyone who has come forward as having been in contact with her personally or knowing her outside tumblr has corroborated it!), nobody has found a secret blog or other social media account of hers where she’s telling a different story, all “holes��� that have been claimed to exist in her narrative are either based on misunderstandings (like different diagnoses for the same symptoms meaning she’s lying) or are simply bogus (like every person on the internet with her name is her). so honestly she would have to be a really fucking good scammer and catfish, in which case she would also be more than able to avoid any of the things you criticize her for. if she is a scammer, that means she’s too clever to be found out for literal years, but if you are able to “expose” her based on her own posts that means she’s too dumb not to make obvious mistakes. you really have to pick one of the two

you all expect her to do ridiculous things like produce content or sell things when she is barely able to move, set up a live stream/youtube or go on television when she has been stalked and harassed and doesn’t deserve to have her privacy invaded like that, not to mention she cannot be expected to do the amount of work necessary for proper videos in her physical state. being disabled and poor and dependent on donations doesn’t suddenly mean people do not have a right to privacy anymore. would you like to turn yourself into a zoo exhibit? it’s humiliating and dehumanizing to show others how bad you’re doing. i wouldn’t go online and share videos or photos of myself during a flare, when i can’t wash myself properly, when my flat is a mess, when i feel disgusting. it’s absolutely vile to demand that angie should do this, especially considering you could still claim the material is fabricated. who stops anyone from making their flat a mess, making themself look a mess, lying down in bed and filming that? are you expecting her to show how she’s being cleaned or something similarly humiliating and invasive? seriously.

i don’t know if none of you ever had a family member or friend who needed round-the-clock care, but i did, and it’s expensive. i live in germany, which has a social security and health insurance system far far superior to that of australia, but even here barely anyone can afford in-home care. the only way to get it at least partly financed through insurance is by going through a lot of bureaucracy to apply for a certain level of care (Pflegestufe), but it’s incredibly hard to prove you need it. my grandma was unable to dress herself, go to the toilet, shower on her own, get out of bed on her own, walk more than a few steps, and was completely disoriented and a potential harm to herself due to dementia, as well as suffering constant neurological pain much like CRPS, but we never got her to the level of care where all her disability expenses were covered. nobody paid for travel to or from doctors, we still had to pay most of the fee for the nursing home she stayed at. why? because she sometimes had a good moment when the investigating people from the insurance visited, or because they simply thought she was exaggerating. we tried for years. her entire retirement fund was spent on the care, and her children still had to pay a lot more, and my mum drove her to doctors on her own charge. do you know what happens to people like my grandma who don’t have any kin to do these things for them? they die. they deteriorate and die. they might be lucky enough to go to the hospital and then die in a clean bed at least. there’s no fucking safety net if you don’t have a family or friends who pay for your care/take care of you themselves.

speaking of nursing homes: they are under-funded and under-staffed and over-crowded. the home my grandma was at had really nice nurses, but they couldn’t take care of a single patient all the time. so when the dementia became bad, and the pain was bearable for her, my grandma would undress herself and sit in the cold for hours. she would defecate in her bed because nobody took her to the toilet in time. this is not a worst-case scenario, because at least my mum visited her frequently and the nurses did check on her when they could. but there have been cases of homes leaving patients alone for days, not feeding them, giving them the wrong medicine or too much or too little or not giving them any when they needed it, physical and sexual abuse of patients, the list is long. this happens all the time. i know many people who work in healthcare and they all can tell you about such things happening. considering the amount of bad experiences and medical abuse angie has already endured, and that homes aren’t automatically equipped to deal with cases like hers, and that it would mean giving up the limited independence she has, and that there isn’t anybody who could fight on her behalf if the home does anything wrong, it is absolutely not an option for her. that is why she needs her own disability-appropriate housing and private care.

i’m multiply disabled myself, and there are so many hoops you have to jump through to get what you need, and so much help you need. i cannot imagine how i would survive without the help provided by my mother and boyfriend, especially when i have a medical emergency or a flare. it took years of worsening symptoms and months of being almost bed-bound until i even got a diagnosis and started treatment. at first i had to pay for some of my medicine out of pocket which amounted to several hundred euros in only a couple of months. i am incredibly privileged and fortunate to live somewhere with pretty good health insurance which covers all my meds by now, so i only have to pay for my supplements and whatever devices i need to make my life easier. i am also forever thankful and in debt to the people supporting me financially, socially, medically, legally. without that, i doubt i would be able to work and do my apprenticeship. and, like, my physical illness is a lot less debilitating than angie’s, but if i didn’t have health insurance and social security and people helping me privately, i’d be in immense debt and under a lot of stress that would aggravate my condition and make me deteriorate, and i wouldn’t know how to survive in the long term. so yeah, angie’s situation is absolutely dire, and the problem with any long-term condition is that you have to deal with it all your life and you don’t stop needing help and care and money. like, sorry, but i cannot imagine that anyone who is intimately familiar with the consequences of being severely and constantly disabled would think her claims don’t add up. they unfortunately are absolutely consistent with my own experiences and cases i know first-hand.