#(which i cannot do until i have insurance which i cannot get until i get a job which i cannot get until i have job experience...)

[fallen-faerie]

ppl keep asking me why i havent been posting a lot and its because ive been in extreme withdrawal from serious opiates for a MONTH now. i take 3 8mg strips of suboxone daily. and when i dont take 1 of them i get sick within a few hours. its now been a fucking month.

i lost my insurance without my knowledge and upon finding out, i had to pay for my medicine out of pocket until it was fixed. and because of the extreme withdrawal i missed a few appointments telling them i was in so much physical pain i couldn't drive. and so i was booted from that office and now i am awaiting getting into a clinic specifically for suboxone that is within walking distance.

i honestly don't know how ive managed to make it this long without my medication. and ive been on suboxone for years so i know its going to get worse. it HAS been getting worse each day. i have to get back on it in order to taper off of the drug completely.

anyone else i know probably would have relapsed on heroin by now. (that was the drug i got clean from). and i have been tempted to just do it to end the suffering im in.

words cannot even describe the amount of pain and torture i am feeling. i only have another week left until i get into this clinic. they said they will call if an opening is available but there is such a long wait list because i live in a city that has a realllyyy bad opiate problem.

i think ive only made it this long because of my kids and the fact that i refuse to throw away 5 years of sobriety because my insurance company failed to notify me that i needed to re-apply for insurance.

the pain is fucking excruciating and everything in me is telling me i cant go much longer without using something to make it stop. its messing with my head. and its not like before when i was homeless and addicted to heroin. i always have money on me. i live in a bad neighborhood where dealers are all around me. im doing my best to try to distract myself with video games. i am literally so sick i can barely even move. thank god i have ppl here to help me but even they can see that im starting to lose it mentally 😭😭😭😭😭

and before anyone tells me i should just rough it and not get back on suboxone:

suboxone withdrawal can last for months. ive already been off of it for a month and its only gotten worse not better. and i have been on suboxone since i was 19. im 27 now. so i would probably be looking at many months of torturous withdrawal. the only way i can actually get clean from suboxone is by tapering off of it little by little, which i was waiting to do because i have a toddler to take care of and tapering off of it is hell too.

[goldkirk]

question: have any of you personally seen a dietician (not looking for experiences with nutritionists, only dieticians), and did you find it helpful or useful, and if you did see a dietician and you ALSO have seen a GI doctor, how did the experience compare for you in terms of helpfulness + how much you felt listened to and helped?

[lunar-fey]

ohhhh my god. okay. so. my aunt does like, she buys random junk in bulk from retail wholesalers and then resells it on like, facebook marketplace and ebay and stuff. whatever. so my mom works for her. makes a flat $50 a day, regardless of the fact that shes disabled and doing hard labor for at least 8 hours a day, often 10+. and min wage here is $10 an hour but mom argued that $50 a day is still more than what she would make working the same hours at an actual job because of taxes...like girl that would be 50% taxes. you do not pay that fucking much. so thats already Bad.

but today mom shows me a video of a knife theyre gonna sell, and i watch 2 seconds and i realize its an automatic knife, and i tell her hey. thats illegal to possess in this state. let alone sell! and mom is like ohhh [aunt] knows what shes doing itll be fine.... we sell knives on there all the time she just doesnt put pictures and calls them something else on the listing to get around fb/ebays policies :)

LIKE. HELLO. THATS NOT BETTER. YOURE COMMITTING MULTIPLE CRIMES. *AS YOUR JOB.* and she was just like "its not a big deal she knows what shes doing." folks, this is the same aunt that, very illegally, paid me to sort through her clients confidential tax documents and bank records and stuff. because she works for a bank. and took the records home to sort them. i dont think she DOES know what shes doing, actually!

[irkenheretic]

i'm absolutely sickened by the news. you fucking think you're so moral because you ~don't post about icky stuff~ and think that Bad Gwoss People Who Write Weird Stuff need to be run off the internet. all of you- including the motherfuckers who went "ermmmm i dont approoooove of them being onlineeee uguuuu-" are not fucking seeing heaven. i hope you all die in a tire fire just so you go to hell faster. i'm so glad i'm into durarara now so i'm not tethered to a fandom comprised of 50% wastes of fucking air that got a disabled artist killed because you didn't like the porn they drew. get fucked wholly and truly

[jackalhadrurusluvr]

another day another why must my mom make everything as difficult as possible

[binders-and-beanies]

.

[labetalol]

Thank you for your perfectly reasonable tags about that pharmacy post. I hate pharmacy posts on this site because it's always like "the pharmacy didn't preemptively order my meds that I waited until the last minute to ask for", "the pharmacy won't break federal regulations to give me my medication", "the insurance/my doctor fucked up but the pharmacy is denying me my medication because they hate me" and it is exhausting.

no thank YOU for the reply! i honestly saw someone in my inbox and was like. great here comes the hate for a very normal sentiment. i see you've been a tech for a while, which is awesome! i just graduated pharmacy school but have been working as an intern for a few years and literally i love retail pharmacy, i love helping people, i love having that rapport with patients and solving their problems, but majority of the time it really could've been avoided with a call to the pharmacy ahead of time.

i've been licensed now as an rph for a month and while i love it, it is a thankless job WHICH is to be expected being in healthcare but the way my team and i move heaven and earth to get a patient their medication and they're like. took you long enough. like OK !!!! LOL

but no seriously it is exhausting and i usually bite my tongue with posts like those that are ALL over tumblr but like c'mon. does OP seriously expect us to remember they take some weird manufacturer's generic qty 120 for a 30 ds and to order ahead of time??? like girl. give us a BREAK and call.

anyway thx for the message! that one part about "the pharmacy is denying my medication because they hate me" - throwback to the girl who reported us to the DEA, board, and corporate that we were sexist ageist AND ableist for not giving her her dilaudid... because we were out of stock and CII rx are nontransferable. like c'mon LMAO

[tardis--dreams]

Gotta talk to the department boss tomorrow because i asked for opportunities to increase my work hours. I regret it already but i can't back out now so this is gonna be fun (:

[gaysindistress]

Things that I feel like would happen when you’re in a relationship with Simon Riley.

Simon Riley masterlist

1. First off he hates the word ‘boyfriend’.

Maybe it’s because he’s in his mid thirties or something but he can’t stand being called your boyfriend. He’s more than that but also not at the same time. You live together, have access to each other’s bank accounts (which is only because he hates it when you try to fight him about him giving you money), and you’re each others emergency contact. He thinks of himself as your husband. The man wears a silicone ring when he’s home and a necklace with the ring that’s totally not a wedding band when he’s working. Price has seen the chain once or twice and smirks, shooting him a knowing look but never says a word.

Simon cannot stand it when people get nosy and want to know what your relationship status is. You’re together and that’s all that matters. No one needs to know that you’re the beneficiary of his will and life insurance policy or that he’s put you on all of his accounts. No one needs to know that he buys you anything you want but has only ever bought you two rings; a thin gold band with a flower engraved on it and its twin a matching emerald ring. No one needs to know that when he gifted them to you, there were tears and promises of safety, love, and happiness whispered against feverish skin. No one needs to know that he has your name woven into his chest tattoo.

No one needs to know any of that because your relationship is between him and you only.

2. You are not some submissive little house wife. You are a strong independent woman and he prefers it that way.

I know this one goes against what most people say but hear me out on this. Simon has been independent since birth practically. He’s only had himself to count on for years. Even in the military, he’s only been able to rely himself. Sure the others watch out for him but if it came down to it, he’s the only one who’s going to get himself out alive.

The thought of someone else relying on him in that way is terrifying. He can’t even fathom what it would be like to look at another person and fully trust them in that way. Half the time he feels like he can’t even be trusted to take care of himself let alone another human. In theory a sweet docile housewife is great with the meals and clean house but not for him. He needs to know that you can hold your own. He needs to know that you can be independent and carry on without him if something happened while he was working. He needs to know that you will be okay if he doesn’t come back.

You have to be okay without him no matter how much it pains him to think about it.

Like I said before, he’s made you the beneficiary of everything so he knows you’ll be set financially but that’s not enough. He’s made Price promise to keep an eye out for you. He’s made you promise to let Price do that and you agreed because it’s Simon who’s asking but you’d tell anyone else to fuck off.

In addition to all of that, he’s installed the best security system the government has to offer in your house. You have a very expensive and large safe in your shared closet that he’s instructed you to only open if you feel unsafe. While you might not like it, you agree to go shooting with him so he can sleep at night knowing that you could protect yourself if he’s not home. He’s gone as far as to make sure you have all of the licenses and certificates that are needed to legally own firearms in the UK.

He’s not leaving any opportunity for you to be vulnerable or have your ‘safety checks’, as he calls them, taken away.

3. Simon Riley is a godless man…until he meets you.

Now this is entirely my own headcannon with no evidence to support it so bear with me.

Simon had a shitty childhood where his mom would pray to a god who never listened and his dad would shout verses at him when he was drunk. God was a mythical figure that he was told stories off with nothing to show for it. He did believe at one point but then his dad never got better, his mom wore bruises of every shade, and his brother found comfort in drugs.

He found himself praying when he was being tortured by the Mexican cartel. Between the flashbacks of his abusive past, he prayed to a god who had failed him so many times before to help him. He prayed again as he dug himself out of that Texas grave with the major’s jaw bone. He wailed his prayers when he found his family executed after Sparks tried to kill him.

After that he deemed himself a Godless man. Years of praying had passed with nothing. This god had decided that Simon was not worthy of a miracle so why would he continue to worship him?

That was until he met you. He finds himself praying before every mission, every time he has to leave you, every time he’s on his way home, and just about any other time he thinks of you. He doesn’t know what exactly he’s praying for other than for you to be there when he gets back.

He whispers his prayers to an absent god against your skin as he worships your body, soul, and heart. He promises to be devoted to you until his last breath and vows to find you again in whatever afterlife awaits you. He pledges to find solace in you and only you when his haunting nightmares return. He makes an oath to your heart that it will never weather another storm alone again for his will take whatever beating that comes your way. He shows you that he will love you in the same manner as a Hozier song; putting you above all else because you have become his religion, his faith, his beliefs, his life.

You have become all that he is and he thanks the god he once believed in for you. He prays again but to you, his heart, his love, and his beacon through the enteral storm of life.

[freedarick]

I finally made an appointment at the clinic

[readingaway]

I have to finish writing a sample query letter and submit it by tonight, so I can get it critiqued at a writing conference and I cannot for the life of me figure out how to write an intriguing, informative, and short summary of wth this book is about. Like. Just explaining the setup takes a whole page.

[baddminton]

.

[goldyke]

LAP Bands should be illegal

This post is going to deal with medical fatphobia, weight loss surgery, coercion, emetophobia, food issues, disordered eating, and just all around bad shit. But it’s important.

Shortly after I reached adulthood, I was coerced into weight loss surgery. I weighed about 250 pounds and was considered morbidly obese.

The Lap Band is a disgrace to the medical profession and is just another example of how the medical profession does not care about the lives of fat people.

To preface this: the surgery works. I lost 70 pounds and people treated me differently and I hated them all for it.

The Lap Band made my life miserable. When it was filled, I could not eat until noon without getting stuck. Even then, getting stuck was always a risk. There was a strict diet to follow and you were supposed to be safe from that if you followed it. On top of that, there were rules for how you ate. One standard I saw was not to eat in bites larger than your fingernail. Can you see yourself doing that for a week, let alone years and years?

Getting stuck is a horror you can't imagine. The food lodges in the top of your stomach, blocking off your system. You continue to produce saliva and swallow it down. Slowly, the mucous in your saliva builds up. It feels like you're drowning. Eventually, you have to essentially throw it all up. A disgusting experience (and a mortifying one if you're in public.) The saliva is thick and ropy. This experience is often called "sliming" on the forums.

I became frightened of eating in public. In a way, I became frightened of food altogether. I knew something had to give the day I reacted to someone biting a hamburger in a tv show the way a regular person would react to a killer jumping out in a horror movie. I developed the disgusting and unhealthy habit of chewing and spitting out food. I completely lost my enjoyment of many foods I had previously enjoyed because of how problematic they were (I can no longer enjoy a chicken thigh for example.) I stopped eating meals and began grazing. I developed eating habits worse than the ones that "made me fat"

After 3 years, I had the band emptied of fluid, which significantly decreased, but did not stop, these problems. I regained the weight, and found it didn't bother me. (Along the way I discovered that my discomfort with my body had never been weight related)

I had my band removed after 6.5 years earlier this year. I am in a support group on facebook for victims of this malpractice. There are 5.6 thousand members, each with their own horror stories. Some of them cannot get the band removed because insurance will not cover the procedure, though they happily covered the band's placement. Some have tried to go through with removal but have had surgeons try to coerce them into getting a different weight-loss surgery instead of just removing it. Many have long-term damage from the band eroding the walls of their stomach or esophagus, or from the band adhering to multiple organs. Many of them had the band for 12-14 years, before removal because none of our doctors told us it needs to be removed within 10.

Many practices no longer perform Lap Band surgery and now believe it is unethical. The surgeon who removed my band still performs this surgery regularly.

A study performed in 2011 with 151 lap band patients, found that 22% of patients experienced minor complications and 39% experienced major complications. The person who coerced me into surgery actually experienced major complications and needed an emergency removal.

I experienced no serious complications. Everything I described above is considered normal. And It still drastically lowered my quality of life.

I don't know why I'm sharing this or who I'm sharing it for, but here I am. If you know anyone considering the lap band surgery, don't let them go through with it without knowing the truth. And please be kinder to your body than the medical profession wants you to be.

[chronicallycouchbound]

I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.

I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.

I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.

I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.

And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.

The first business day after my 21st birthday I immediately got things set up to get in home care.

This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.

In short: my day-to-day life is entirely dependent on others.

And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.

Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.

I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.

When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.

I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.

[charminglyantiquated]

9/25 update on the Nautilus, for anyone curious. Details below (long), but in summary: the damage is more expensive than we'd hoped. We will have to buy Nautilus back as salvage and repair her mostly out of pocket. We still do intend to repair her, but it seems now it will be over a timeline of several years. The fundraiser for her repairs has been raised to reflect the new estimate, and will remain up as long as we're working on her, for anyone who wishes to contribute. I'm so unbelievably, profoundly grateful to all of you who have helped us so far. Thank you so, so much.

Damage: a joint survey was conducted Tuesday between surveyors from our insurance and that of the other vessel. It will be another 3-4 weeks before we have the official paperwork, but the consensus was that the damage approaches twice Nautilus' value. In addition to the mast and all the attached rigging, sails, hardware, etc., the teak deck would have to come up in order to address the damage to the deck and hull. This means that rather than pay for repairs, our insurance company is almost certainly going to write her off as a total loss.

I am waiting for formal documentation before sharing any exact numbers. Once we have them I will be more precise. But the general process as I understand it right now is below, for anyone curious about how everything shakes out.

What a loss means with insurance: my understanding is that repair damages are only covered by insurance up to the point a vessel is totaled. Since the damages almost certainly surpass her value then she would be totaled instead. In this scenario, our insurance would give us the value the Nautilus was insured for, and then pursue the other vessel's insurance for their own reimbursement. Additionally the other insurance might give us the income we lost over the remainder of the season, but whether that will happen and what amount that would be is up in the air, with the three different attorneys we consulted agreeing that we'd be fortunate to get any amount. Anything beyond that is apparently unlikely, any other legal pursuit would possibly lose us more money that we might hope to gain.

On our end: we took out a loan to buy Nautilus in April, and still owe the majority of it. By the terms of the loan, with a total loss we would have to pay back the full loan immediately. Then, because this is essentially our insurance 'buying' Nautilus from us, we would have to buy her back as salvage. The salvage price would be determined by the salvageable parts of her, and the surveyor. Hopefully it would be less than five figures, but it depends heavily on which insurance company actually ends up with her, and how exhaustively they tally up the pieces of her that they could sell. The surveyors could not tell us at the time of the survey who would end up with her or what they would charge. For the next month or two Nautilus is in a kind of purgatory where we do still technically own her, but only until insurance gets through the paperwork, which makes it difficult to begin any work right now.

Financially: when the dust settles, once the loan is paid and we own Nautilus once more as salvage, I think that based on the current estimates we may have some funds remaining. But even in the best case scenario - low salvage price, and we do receive lost income - it wouldn't be enough to finance all the needed repairs. My partner and I will be keeping the fundraiser up for as long as we are working on her, for anyone who wishes to contribute to her repair fund. Any help from anyone who would like to see her sailing again will always be deeply appreciated, but we're both aware it's an absurd number. If we fail to meet it, we're both keenly aware it's not through any lack of generosity - I cannot possibly express how grateful we are for the help we have received already, and what a massive difference it has made over the last month as we deal with the immediate and long-term fallout, covering her haul-out and towing and bills over the months it will likely take to resolve all this.

Fixing Nautilus: my partner and I are still committed to repairing her, despite the cost and the time involved. The thought of letting her be cut up for salvage is too heartbreaking to bear. But at the pace things are progressing and with the resources we have, it's obvious now that it's not feasible to fix her fully over the winter; it will instead be over the course of several years. However, my partner and I hope that by doing as much of the work ourselves as we are qualified for, we can bring down the overall cost of repairs by a fair amount. Additionally, the broken mast was built only a few years ago by a gentleman who still has the plans for it and is willing to guide us through the process of building a replacement. There is a possibility we can connect with a local boat building school's fledgling restoration program. And a great many people have offered their time, advice, expertise, and contacts. The timeline has changed, but we are not giving up on her.

In the meantime: with the survey done, we now have at least a general idea of what the future will look like. Since working nonstop to get Nautilus sailing again by June is not on the table any longer, my partner and I are currently figuring out a long-term plan for ourselves, our little company, and the Nautilus herself. We have discussed a few ideas, which I'll share more about once we settle on anything concrete. Nautilus herself is finally clear of wreckage, with the pieces of her mast on sawhorses beside her, her deck swept clean, solar panel plugged in, and a tarp over the worst of the damage. She's as safe as we can make her for now; there's nothing else we can do except wait for the wheels to turn.

Lastly: thank you all, more than I can say. I have been trying not to miserypost, but I have been having a very hard time dealing with this, as has my partner. It took us ten years to save the money we put into Nautilus, and the few months we were able to spend sailing her together were the happiest and proudest I have been in my life. We have lost the future we'd imagined, and regardless of how this resolves, we are never getting that time back. We are determined not to lose the Nautilus as well, but it has honestly been difficult some days to push through the grief. The one consistent silver lining has been the kindness and sympathy and outrage from everyone who has taken the time to reach out to us. I have been floored, over and over, by how many people we have rooting for us. I am never, ever going to be able to express my full gratitude to all of you. Without exaggeration, you have kept me going.

I will share more once we know more - exact numbers, exact damage, exact plans for repairs and the next steps. Until then, from the bottom of my heart, thank you.

[dayz-ina-daze]

I keep seeing?? Other disabled people offering advice on my dash, and while I don’t know… if there’s like. A Thing going on right now, I do have my own tidbit to offer:

If you want something from your doctor, bring a fucking friend to the appointment. Have a witness.

People who have known me for a little while, or have followed me since I first popped onto tumblr, know that I only recently got my wheelchair. I’ve been diagnosed with POTS and other varying minor medical conditions, plus the slew of anxiety and depression and such that I don’t talk about as often. POTS is a condition that makes it notoriously difficult for someone to stay on their feet for long periods of time due to blood flow, and in my particular case, it also really heavily effects my balance (for example: I was in a dark room and fell over, and genuinely did not realize that I was falling until I had hit the floor) and nausea. I physically cannot eat while standing. I can’t be standing for more than maybe 15 minutes or so at a time, or else I’ll pass out.

My only means of personal monetary support at the moment are commissions, which is especially important during the winter months for me, because my depression and chronic pain really flare up in cold weather, so I have been very hopeful and adamant about finding a job - but obviously, I can’t be on my feet for long periods, so I struggled to get clearance alone for my wheelchair for fucking months y’all. Months of me actually actively begging this same woman who diagnosed me, having full on breakdowns in front of her, asking her what needed to be done for me to prove to some invisible force that I needed this device that would help me get out of the house more and regain some sense of freedom and independence… and she would always send me away again with halfassed excuses!

You wanna’ know what finally made her give me the clear to even ASK my insurance to cover my chair? Me bringing my girlfriend to an appointment with me. An appointment that I had stocked up with multiple notes, references, evidence, etc etc - WHICH I NEEDED! NONE OF! Because I asked about my wheelchair with my girlfriend in the room, and my doctor switched gears immediately. I was cleared to send insurance requests not even within a week.

Bring your friends to your doctor’s appointments. If they’re willing, bring them. This is such a small thing in retrospect, but it’s made me NEVER want to go to an appointment of mine alone ever again. Bring them with you. It’ll save you so much heartache and effort.