#If medical staff places their need to be validated over the comfort of patients maybe they shouldn’t work in medicine

[tricitymonsters]

I’m getting top surgery in a few weeks (woohoo!!) and I’m wondering how all the guys would react if the MC, by medical necessity, needed to be waited on hand and foot? I’m already wondering how tf I’ll feed myself…

CONGRATS ANON! Many new chest blessings upon you!

Mori - Tries his best, bless him. But with a weird work schedule due to band gigs, terminal attention span issues, and an apartment that isn't quite up to code, he might not be the best person if he's shouldering the responsibility all by himself. HOWEVER you can't fault him for a lack of enthusiasm. He would love to feed you Crunchwrap Supremes but I do advise roping someone else in just in case.

Amir - You know this man has prepared full "Recovery Suite" at some exclusive celebrity rehabilitation center or something. He wants full staff on hand "just in case" even if there's a low likelihood of confrontations. He will keep your spirits lifted with his sexy nurse shtick and feed you tasty and nourishing catered lunches to help you cope with the aftermath of surgery.

Akello - Prone to hovering and worry so he'd ask if you would be comfortable staying in his place for a couple weeks just so he can be nearby as easily as possible. Makes you a lot of bracing food but will also order junk food for "emotional support". If youre comfortable with it, he'd also suggest taking photos periodically through the recovery so you can look back on the whole process later (in the case of a top surgery, etc it's a pride and validation thing but for another medical procedure it's just really interesting to have a detailed visual record.

Kazu - Thorough but strict. You stay in bed precisely until the doctor said, you eat exactly what they told you, you do rehab exercises just like the discharge sheet says, no exceptions. You learn during all this that he massively hates hospitals and doctors and he's doing his best not to let that show.

Raath - Maybe not. Maybe that's a bad idea. let him lord over you and your temporary physical weakness. might prod at you just to hear you hiss or watch you squirm. horrible man.

marcel - If you're a good patient he's a good caretaker but the second you wanna break the rules he's like you can be naughty as a treat >:3 Most likely to get yelled at by your doctor for being a flake.

[coochiequeens]

“ Fear of male people while in a highly vulnerable physical state is not illogical”

This article is taken from the December/January 2023 issue of The Critic. To get the full magazine why not subscribe? Right now we’re offering five issues for just £10.

By Victoria Smith 

In Trauma and Recovery, the psychiatrist Judith Herman distinguishes between traumatic events that are “natural disasters or ‘acts of God’” and those “of human design”. In the case of the former, she writes, “those who bear witness readily sympathise with the victim”. 

When it comes to the latter, the situation is more complex. Here, taking the part of the victim is not a natural response. After all, Herman points out, “all the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil.” By contrast, the victim “asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering.”

Victims are difficult people. They disrupt the untroubled narratives we tell ourselves about the world we live in and the people we know. They tug at those threads that are supposed to remain untouched. 

Nowhere is this more true than in the case of victims of male sexual violence. Rape, sexual exploitation and child sexual abuse are not rare; their occurrence is not limited to discrete communities with known ideological flaws. 

It cuts across all social strata, often thriving in settings which self-identify as virtuous and safe: the church, the charitable organisation, the family. To exist in such a setting and demand that others bear witness to your trauma — that they respond, socially and politically, to the harm done to you — is an incredibly challenging thing to do. You are not just asking for care and consideration; you are asking people to revise their most fundamental group narratives, the truths they tell themselves in order to believe they are good and that they belong. 

It is for this reason, I think, that many people sympathise with victims of rape and child abuse in the abstract, but do not want to witness their trauma in the wild. In the minds of others, those who make visible the aftermath of male sexual violence can quickly cross over from victims to perpetrators. Their crime is not one against the integrity of the body, but against the bystander’s own sense of self. 

The story of the Princess Grace Hospital offers one such example. 

In October this year, a victim of sexual assault had a potentially life-saving operation cancelled by London’s Princess Grace Hospital. This was in response to her request that due consideration be given to her trauma. The woman, who had arranged to have complex colorectal surgery, had asked for single-sex facilities, and to be exempted from any requirement to feign a belief that gender identity trumps biological sex while receiving treatment. 

“Fear of male people while in a highly vulnerable physical state is not illogical”

These are not extreme demands. Fear of male people while in a highly vulnerable physical state is not illogical; asserting boundaries can form an important part of recovery. For rape victims in particular, the right to stress the primacy of one’s own perceptions of sex and power — rather than cede to someone else’s insistence that their sex, and their power in relation to you, is whatever they say it is — can be vitally important. 

A private hospital, the Princess Grace boasts of “specialists in care for women’s health”. One would assume such specialists know what female bodies are and, while some may lack expertise regarding the relationship between biological sex, male violence and trauma, most would possess a basic degree of empathy and compassion. 

While issues of human resourcing and the organisation of physical space may yet have made the patient’s requests difficult to accommodate, this is something for which the hospital could have expressed contrition. It is not the fault of the Princess Grace Hospital that we live in a country where 98 per cent of sexual violence is committed by male people and an estimated one in 20 female people have been raped. Nentheless, that is surely something every medical institution ought to take into account when considering how best to meet the needs of female patients.

But representatives of the Princess Grace Hospital were not contrite. On the contrary, on 7 October the patient received an email from Maxine Estop Green, the hospital’s CEO, stating not just that the operation was off, but explaining why:

“We do not share your beliefs and are not able to adhere to your requests and we have therefore decided we will not proceed with your surgery […] I appreciate this is not the communication you were expecting to receive, however HCA is committed to protecting our staff from unacceptable distress and we believe the cornerstone of good patient care is based on mutual respect and trust.”

And there it is. As if by magic, rape victim becomes potential perpetrator, threatening to cause “unacceptable distress” due to her trauma, a trauma now recast as “values” that others — the untraumatised, those untainted by anything so inconvenient as fear — do not share. 

I am not entirely unsympathetic to the problem faced by the Princess Grace Hospital. It is the same problem faced by any institution or political grouping that has been frogmarched into accepting that a woman is anyone who says they are a woman, always and without exception. The trauma of female victims of sex crimes — who cannot switch off their awareness of who is and is not male — does not fit this narrative. 

The visceral, physical response, the unwilled terror at the sound of a male voice or the sight of a male body — all of that contradicts the line that trans women are a special, extra-vulnerable type of female person, as opposed to a just another type of male, with the same physical capabilities and emotional unpredictabilities as any other. 

The argument against trans women in sex-segregated spaces is not based on their transness, but their maleness. People pretend that’s not true, however. In keeping with the “do nothing” preferences of the bystander, many people would rather impute bigotry and bad faith to rape victims than deviate from the “trans women are women” thought-terminating cliché in which they have become invested. 

This investment may have complex roots; perhaps at the start it seemed a low-cost concession (“why not just call people what they want to be called?”), one which didn’t require actual belief (“of course, no one is actually saying …”). Then various other factors — peer pressure, threats of violence, the risk of ostracism, financial incentives — came into play. In the end, no one remembers why they ever expressed doubt. Doubt is for bigots. 

“We should not be surprised how tenaciously people hold onto their myths”

We should not be surprised how tenaciously people hold onto their myths, even when faced with the pain of others. A mother will disbelieve an abused child rather than accept the man she married is a bad person; a congregation will send a girl to a Magdalene laundry rather than admit that the head of their flock might be a rapist. Similarly, even women who call themselves feminists would rather denounce women terrorised into fearing all male people than admit that there is a problem with pretending that maleness is in the eye of the penis-owner. 

This is why “reasonable compromises” are impossible in the trans debate as it stands today. Any admission whatsoever that maleness matters — that it is real and politically salient — is heresy. The faithful will sacrifice the vulnerable rather than lose their religion. 

The degree of shaming to which survivors of rape and child sexual abuse have been subjected in order to preserve the “trans women are women” line is utterly obscene. Women who ask for female-only spaces are told they must reframe their boundaries; that they are obsessed with genitals; that they are weaponising trauma; that they have the wrong values and the wrong perception of reality. It is vital that they are vilified. Stop to consider their pain and you, too, might start pulling at the thread of the dogma. 

Because this is the sad truth of modern trans activism: it is completely incompatible with the recognition of female trauma as anything other than a fetish. Genuine female fear of male people is an affront to “I am whoever I say I am”. It is viewed as an attack, therefore all shame must be projected back onto women themselves. Like Medusa with her snake hair, once again the female victim of male sexual violence is made into a monster. 

The patient at the heart of the Princess Grace Hospital story has since had her operation rescheduled, with the original surgeons in attendance. It is a positive ending, as far as it goes. She is not condemned to die for her beliefs. 

But some actions cannot be retracted. The email sent on 7 October was not just an operation cancellation. It was an act of shaming, the same shaming to which victims of sexual trauma have been subjected throughout history for daring to suggest their truths matter more than particular party lines. 

This is the context in which we need to understand the Princess Grace story: as not just related to “the trans debate”, but clarifying the way in which said debate not only replicates but amplifies the traditional, millennia-old shaming of female victims of sex crimes. It is this shaming that enables someone such as Maxine Estop Green to potentially put a woman’s life at risk for expressing her fears. 

This shaming is familiar and commonplace. It is no less grotesque for it. None of us should choose to “see, hear, and speak no evil” when faced with it.

[bellarke-rollercoaster]

Blackout in the Blizzard

Happy Melendaire Monday everyone!

As promised here is your fix of this first week without any TGD episode! Feedback are welcome as much as kudos 😁. Hope you'll enjoy it ❤️

Here is the prompt :

Claire Browne and Neil Melendez find themselves stuck in the elevator of the hospital on their way out because of a storm that cuts the power. Neil then addresses Claire's strange reaction earlier in the day when she discovered that Neil and Lim were dating outside the hospital.

READY ?

You can also go on AO3 to read by the way!

San Jose was hit by a Category Three snow storm and, as any storm of that magnitude would, it did a lot of damage. Claire's shift was extended by six hours as a result of the extra patients and the lack of employees due to the time of the year

During this same shift Claire had learned that her superior, Dr. Neil Melendez, was apparently sharing more than a professional relationship with her other superior, Dr. Audrey Lim.

Dr. Browne had tried not to have any reaction to this news, but deep down this information annoyed her although she didn't quite understand why. She couldn’t help but wonder what Melendez saw in her. It wasn't that Dr. Lim wasn’t great, it was that she just couldn't picture them together. It didn’t make any sense to her. This thought was interrupted when the doors of the elevator opened to reveal none other than Dr. Neil Melendez himself.

She flashed him a friendly smile as she walked in, reaching for her intended floor button but stopped as it was already lit: his shift was apparently over too as they were going to the same level. She was about to open her mouth to break the silence when the elevator made a sudden jerk and stopped dead, leaving them both in a cabin half-lit by security lights.

As if her day wasn’t crappy enough, she had to get stuck in an elevator with her boss with whom she didn't particularly wanted to spend time with. Fate was apparently angry at her. Melendez tried to be reassuring, "the emergency generators shouldn’t take long to take over, with a storm like this, a power cut was predictable.”

“Yes, even if this power outage could have occurred after I left the hospital. It would have been nice to have some luck for once. You know, getting stuck in an elevator wasn’t really on my bucket list, nor my to do list of the day–”

“Especially with the most boring person in the world?” Neil gave a frank laugh at the decomposed expression of his resident, but his remark didn’t have the desired effect since Claire frowned a little more:

"It's not really the word I would have chosen to describe you, nor the way I was going to finish that sentence. It's just that this shift has been long and I would prefer to go home and collapse on my bed after a long warm shower. But you're right, the backup generators should start soon; what else could go wrong, right?"

Unfortunately, the power wasn’t restored five minutes later, nor twenty minutes later. It has now been half an hour since they were originally stranded in the hospital elevator cabin. Neil had been the first to sit down after realizing their phones had no signal and they couldn’t tell anyone about their situation. It had taken Claire a few extra minutes to sit by his side.The only benefit to this situation was that hospital elevators were wider than conventional lifts, leaving them more room to comfortably extend their legs, even though Claire had chosen to pull her knees to her chest.

Since they had exchanged banalities about the patients they had treated a little more than ten minutes ago, a silence had settled. But this silence was strangely uncomfortable. Claire didn’t know what to say without indirectly talking about the burning piece of information the residents had found out concerning the two attendings; so she opted for silence, keeping it quiet was better than saying something she would regret. But Neil decided otherwise.

“I guess the whole hospital knows by now.” Claire wasn’t sure what he was talking about

“About what? Us being stuck in the elevator? I strongly doubt it.”

“No, I was talking about–”

Now she knew what he meant so she cut him off, “About you and Dr. Lim? Probably, although it's none of my business.”

Neil gave her a weird look. "You don’t approve, do you?"

Claire looked up at the ceiling, trying to find a way to put an end to this conversation because the last person she wanted to have this with was him, especially in a confined space where she couldn't leave. "Like I told you, this is none of my business. You sleep with whoever you want.”

Neil glanced at her, a strange expression on his features. "It's funny, I could have sworn the opposite from the expression on your face earlier today. Claire, you can express yourself freely: we are stuck in an elevator, so right now I’m a normal person, not your boss. I will not blame you for your opinion since I’m the one who asked for it. Let's say this space is a neutral zone, okay?"

Claire hesitated for a few seconds, he wasn’t going to let it go if she was truthful, so she went for the easiest way out: lying. "Fair enough. It’s not that I don’t approve of it, it just reminded me of my relationship with Jared. We were two colleagues who were a little more than that. People knew at the hospital and you may not know but that's what made Dr. Coyle think that I was an easy target to hit on. It's what started the whole incident that followed; it complicated things between me and Jared and so he left. Not entirely because of me, but partly I think. Since this, I tell myself that it’s better to stay professional and to not mix private and professional life with my colleagues or superiors."

What she said wasn’t entirely false; the story was true, it was just not relevant to Dr. Melendez's request.

“I didn’t know that your relationship with Jared had been a factor in the incident with Dr. Coyle. I am sorry to hear that.” Neil nodded.

Claire smiled shyly, slightly ashamed of having lied.

“It's not your fault if Dr. Coyle thought that because I had a relationship with a member of the medical team, I'd be willing to sleep with anyone on the staff at the hospital.” She laughed

“No, indeed.” Neil chuckled.

Claire was relieved: the bullet was dodged. She wondered why she felt the need to lie or why she was embarrassed by the situation. She knew that the story she had just told was not the reason she was upset by the fact that Neil was sleeping with Lim. Lying to herself and others, though, had always been easier than facing her own emotions and feelings. Emotions and feelings were always leading her toward disappointment.

Neil noticed the closed expression on Claire's face, which was the same he had seen earlier. "Dr. Browne, are you okay?”

Claire pulled herself together and turned her head to look her superior in the eyes, "Yes, of course. I’m just starting to wonder when we are going to get out of here. It must have been an hour now, the power should be back. It's weird.” She suddenly stood up, feeling uncomfortable by their proximity. She needed to put some distance between them, so she started looking at the buttons on the elevator like they were the most interesting thing on earth.

“Not as weird as the expression on your face. It tells me you’re obviously annoyed by something, like it was earlier today. What is it you’re not telling me?” Neil had gotten up too.

Claire pretended not to hear. “Unbelievable! Even the emergency button won't work.”

“When you’re done avoiding the subject, maybe you’ll be able to answer my question?” Neil was growing annoyed by her avoidance. Claire pretended not to understand. “I don’t know what you’re talking about. I’m not avoiding anything. Is the lack of space making you lose your mind or something?” She was growing less and less comfortable by the situation.

Neil raised an arm in the air, clearly exasperated. “I think you know very well what I'm talking about.”

“No, as a matter of fact, I don’t,” she said, crossing her arms over her chest. Neil shot her a meaningful look.

“Why are you so stubborn?” he retorted.

“Stubborn, me? That’s rich coming from the most stubborn person in this hospital; not to mention most annoying and endowed with an oversized ego!”

Claire realised she might have gone too far, placing a hand over her mouth in surprise. “I'm sorry, that's not what I meant–”

Neil cut her off abruptly: “No, don’t be sorry, a little honesty is refreshing! And since we’re being honest with each other, why don’t you give me your real opinion about my relationship with Dr. Lim.”

“I've already given it to you, I have nothing else to say. Anyways, why is it so important to you what I think about your relationships? And while we're being honest, why did you really kick me off your team? Was it because your ego couldn’t stand that a woman had a better idea about how to treat a patient? Or was it just pure stupidity? Because, thinking about it, last year Shaun was convinced he could save a young boy’s life and was ready to take a bone marrow sample on the patient to prove it, against your orders. When you found out, you simply kicked him off the case. But you didn’t kick him off your team. So, why did you try so hard to have me out of your’s for good?”

Neil was taken aback by her outburst: he definitely hadn’t seen coming. “It doesn’t matter, Shaun was– You’re changing the subject. Why does Dr. Lim and I seeing each other bother you?”

Claire raised both arms in the air, far beyond exasperated. “You are unbelievable! For the thousandth time: I don’t give a shit about your relationship with Dr. Lim. Do you really think that you are so interesting that everyone has to validate you and be on the lookout for the smallest of facts about you and your whereabouts?”

“I don't think that–”

“Bullshit! Why do you care so much about what I think about you being involved with her?”

“Because I think you lied to me about the real reason why you disapprove of it so much!”

Without realizing it, they had drawn close to each other, standing only inches apart. It was as if they were magnets, attracting each other to be as close as possible.

Claire asked sharply, “why would I need to lie to you?”

Neil looked at her intently and finally gave in. “For the same reason I had to lie to you about why I kept you away from my team for as long as I could.” His voice was so intense that Claire had goosebumps. Her gaze was unconsciously passing between Neil's beautiful dark eyes and his lips. The tension between them was tangible. Gathering what was left of her boldness, she asked him in a voice less assured than she would have wanted, "And what is the reason, Doctor Mel–"

Neil didn’t let her finish her sentence before his lips crashed on hers. The violence of the kiss pushed her against the wall of the elevator. Neil pressed his body against hers while Claire held tight onto his neck, allowing herself to be completely carried away by the feeling. And that's when she realized what she had refused to admit for months: the undeniable attraction she felt for the arrogant and annoying Neil Melendez.

Neil slid one of his hands from her face to her waist, touching the side of her breast. His hand passed smoothly over her back bringing her as close to him as possible. His lips left hers and went for her neckline, murmuring her name in a voice full of the desire he had been refusing himself for so long.

He often made bad decisions, and the decision to give in to his urge would surely prove to be the worst of them. But right now, he would not trade that moment for anything in the world. So he went back to her plump lips, kissing her like their lives depended on it: and in that moment, maybe it did.

The passionate embrace abruptly ended when the lights of the elevator came back on and the lift resumed its way to the ground floor. Neil and Claire parted breathlessly, not quite sure what had just happened. Neil looked at Claire, his gaze full of multitudes of emotions passing through too quickly for her to understand them fully. The elevator stopped. The doors opened. He stroked her cheek gently and huskily said, “That's the reason why Claire.”

A second later, Neil pulled back and left the elevator, leaving Claire stunned and touching her lips absentmindedly. She was unsure of what just happened or what it meant; but one thing was sure: this experience would not leave her mind for a long time.

[lovingconnie-blog]

My First Pelvic Rehab Appointment

I’m about 10 years into Sweet Remission from my first gyn cancer, and 8 ½ year into remission from my second gyn cancer. I’ve had 2 major pelvic surgeries, many pokey proddy vaginal tests, 7 weeks worth of radiation and 6 rounds of chemo during active treatment. Since then, I’ve had many follow up CT scans and gyn oncologist check ups. It’s a lot of pelvic trauma.  

During all of that pelvic trauma, not a single gynecologist, gyn oncologist, nurse practitioner, physician’s assistant, or nurse has EVER mentioned that a physical therapist may be helpful in my physical and emotional recovery. It’s a tragic failure of the medical community, especially the cancer medical community to not offer a physical therapy referral with even a basic explanation of the potential benefits.  I had absolutely no clue, and I’ve suffered emotionally, physically and sexually because of this failure. To me if feels like a lack of caring for the whole patient. I’m grateful that my doctors got me into remission, but getting to it took a big toll on my Whole Being.  

I didn’t even know that Physical Therapy could be helpful to me until I went on a Teal Diva Retreat for Ovarian Cancer Survivors in June of 2017. A PT who specializes in pelvic rehab, and is also an Ovarian Cancer Survivor, shared some empowering and fascinating ways that PT may help our unique traumas. 

Our mouths dropped open with amazed and many of us experienced waves of anger and disappointment for never being offered this kind of specialized rehab.  One of my biggest take-aways of Dr. Glenna Sears-Brinker's talk is that my pelvic floor muscles most likely need to learn how to relax. Until this talk the only thing I heard about the pelvic floor is that it “must be strengthened with Kegel exercises”. Intuitively, that never felt right to me though so hearing that relaxing may be a key to rehab and healing filled me with hope.  

I came home from the retreat excited and determined to find a pelvic rehab specialist. My Google searches led me to a couple, but unfortunately, they only work with pregnant women. It felt like another slap in the face by the medical community. I was disheartened and felt isolated. I quit searching. Over the next couple years I developed knee, hip, hip flex-or, SI and sciatic pains as the stress of care-giving grew. I turned to Yoga and old favorite low impact workouts to strengthen and stretch, but despite sometimes temporary relief, things kept getting worse. Still, I had this Knowing that the doorway to my healing was getting closer, the path just wasn’t clear yet.  

As a 24/7 caregiver to Hubs, I have learned and accepted that I need to take care of Whole Self so I can show up for him with compassion, kindness and confidence. So this growing pain wasn’t going to work for me.  

My mom is very involved in her church and is on a committee with a Physical Therapist. She’s also friends with the PT’s family. I don’t recall my mom mentioning that she specialized in pelvic rehab, though, so I didn’t pay much attention.  

Last month I had a massage which brought me great relief. I feel really comfortable and safe with my massage therapist and shared my struggles and intuitive knowing there the right help would come. She asked if she could text a PT friend to see if she may be able to help me. Of course I said yes. And yes this PT could help and I was given her name and number. The name looked a little familiar, but I was so excited and filled with hope that I didn’t concentrate on the familiarity.  

Later that night I shared with my mom. She looked at me in disbelief. This was the PT SHE had told me about months ago. She was a little disgusted with me for not just listening to her in the first place, which is maybe understandable. I saw it as Divine Guidance. My path was clearing!

My first appointment was yesterday. I arrived feeling excited and fully IN my body with confidence and a lightness I’m just starting to embody. A younger version of me would have arrived anxious about the PT body shaming me or saying that nothing can help me until I lose weight. The younger version of me would have been defensive and timid. Not the Current Connie, though! My body may not have been receiving rehab or healing, but my mental and emotional Self has been doing a lot of deep healing and opening. So I showed up to the appointment feeling excited, hopeful, and happy believing that the PT would certainly be able to help me.  

The appointment started with getting weighed, which I wasn’t really expecting, but I can understand why. Instead of closing down and freakin’ out internally about it, I joked with the Tech about the staff audience that was standing in the scale area. Everyone laughed. The Tech kindly said that she wouldn’t say the number out loud and if I wanted I could close my eyes and not even look. I did look and after the initial internal groan I filled myself with loving accepting words in my head for a few moments, and then shifted my focus to the purpose of the appointment. THAT felt incredibly empowering and so self-loving. I accepted the number, loved myself in that moment, and didn’t let the experience of being weighed send me into a downward self-hate spiral.  

Then I met my PT. Instantly, I liked her and felt safe with her. That in itself felt like a miracle!! As I shared my history and what brought me to her, the education and philosophy she shared were in beautiful alignment. She acknowledges that pelvic trauma has a big emotional element, too. I shared with her that I’ve been doing deep emotional healing and that I think my body is catching up. It made sense to her. She didn’t dismiss my “woo-woo” beliefs! I wanted to hug her! She also is frustrated that more gyn cancer survivors aren’t referred to PTs, and even most pregnant women aren’t. I felt validated and valued as Whole Person, it sparked joy.  

She gave me an overall body assessment to see how I was moving. I kept my clothes on the whole time, in case you’re wondering. I did simple things like bend down to touch my toes, bend my knees, squat, resist her from pushing my legs in different directions. Then the initial diagnosis- my pelvic floor is tight- VERY tight. Kegels would have been bad for me. I Knew it and my trust in myself grew in that moment. One of the main objectives to healing for me will be relaxing the pelvic floor which will take time and patience. It’s so different than relaxing your shoulders, for example, it takes time and un-learning.  

Then I laid down on the table for an external pelvic assessment. In the moment I felt totally safe and comfortable with my PT touching my tummy and rubbing/massaging my scars. I don’t touch my scars, and rarely look at them. Same goes for the tummy, until really recently (more on that in an upcoming post). Yet her doing it for medical purposes was totally fine. I noticed, though, that I disconnected from my body to a degree while she was doing it. The tummy and pelvic areas are such vulnerable spots on the human body... the source of our power, our core, our creativity and sexuality. Yet, cancer and being in a larger body has kept me from connecting to that part of my body since I was 12, if not earlier. How beautiful it is to be coming home to my body with such love, hope and acceptance now.  

I learned something really important about scars and doctors from my PT. To get the full impact, I want you to do a quick and easy experiment. Grab the middle of your shirt and pull into a ball. The ‘ball” or “knot” is the scar. Now notice that the entire rest of your shirt is being pulled to some degree. That’s what a scar is doing to your body! Mind blown, right?! Now imagine you have 3 BIG scars in your pelvic area, all pulling on your back, shoulders, hips, SI, and down to your knees and up to your neck. That’s part of the reason my pain has been expanding. Rubbing on the scars, with tolerable pressure, breaks up the scar tissue and fascia which will, eventually, lead to releasing and relaxing the tight muscles that are causing me so much pain. That's another part of my PT work.  

I’ve always thought that scars create scar tissue on the inside of our bodies. It just makes logical sense to me. So I’ve always felt disappointed that post surgery doctor visits didn’t address the issue of scar tissue. My PT told me why- it's because doctors think that creating scar tissue is a failure on their part. They think that if they did a good job that scar tissue shouldn’t happen. That’s not been my experience.  

Finding this out feels really BIG and important to me. Doctors (generally) feel like they are a failure when it comes to scar tissue, so instead of helping the patient treat it (r care for it) they are usually ignoring it. Of course, it’s not every doctor. In my experience, though, I’ve NEVER had a doctor talk to me about scar care. And I’ve had 5 major surgeries beginning when I was 12. The ego is such a powerful thing. If you have scar tissue, please know that there’s hope with Physical Therapy and possibly other methods.  

I did a little Googling last night, after my appointment, about scar tissue because what I learned had such a strong effect on me. There ARE many articles about scar tissue and how to care for them available- even from well-known cancer clinics. So the information is out there, but shouldn’t our doctors, our surgeons, be telling us about it? I hope you’ve had a different experience than I have.  

I digress, as usual. Back to first PT appointment.  

My PT rubbed my tummy and scars for a few minutes. We found 2 distinct spots that felt really tender in my upper abdomen. One I felt all the way down my left hamstring! The other I felt into my low back and hip. On the scars themselves I could feel tightness and/or pain into my SI joint, low back, glutes and hips. A big lightbulb moment for the origins of my pain! And Divine Synchronicity with another method I just started using to heal that I’ll share in a separate post soon.  

Though there was twinges of pain as she massaged, I could also feel relief and relaxing. And more hope came washing over me.  

Then I had electrical stimulation while laying on heating pads for 12 minutes. It felt a little tingly, but not painful. It was relaxing. It was the first 12 minutes I’ve had laying down to relax all by myself for a long time. Heavenly.  

When I got up off the table and walked out I felt a fantastic shift in my body, greatly reduced pain and the sense of physical alignment. And the Angels sang!!  

I have 3 simple stretches to do 3 times a day until next week’s appointment. I’ve done them just TWICE and ALREADY notice a big and wonderful difference. I feel validated and so proud of myself for staying the intuitive course towards healing my Whole Self. I’m so grateful for the path that led to Here.  

[ionecoffman]

When Schools Tell Kids They Can’t Use the Bathroom

Most people probably take their bathroom privileges for granted, heading to the toilet in their home or office whenever the need arises without thinking much about it. But at school, children don’t always have that luxury.

A recent survey by the Society for Women’s Health Research found that schools often disregard kids’ restroom rights, often by failing to have a bathroom rule on the books and provide staff with education on bladder health. Absent official policies, parents and doctors tell me, many teachers come up with their own regulations, which anecdotes suggest can border on absurd. I heard about a teacher who allegedly stipulated that her students could only go to the restroom during class time once every two months, for instance, and read about some school districts routinely locking restrooms at lunchtime or after school to discourage misbehavior.

Schools seek to minimize the amount of time kids spend in the bathroom during class to ensure that they get the most out of their instruction, and generally restrict students’ access to prevent misconduct in the restrooms, where kids tend to be unsupervised. Well-intentioned yet overburdened teachers might adopt such rules to avoid disruptions and ensure that all their students are accounted for. But treating bathroom use as a discipline issue can have serious health implications, especially when a kid needs to go, but can’t.

Read: Using the restroom: A privilege—if you’re a teacher

A majority (84 percent) of respondents in the recent survey, which was distributed among school nurses serving all grade levels nationwide, said students often have ulterior motives when they ask to use the bathroom—maybe they don’t have to go and just want to meet up with a friend, for example, or perhaps they intend to skip the bathroom altogether and cause a ruckus in the hallway. A little more than half reported that kids misbehave in the bathroom. Underlying these assumptions is the fact that few schools have written policies on students’ bathroom use—just 8 percent of nurses said such rules existed, while fewer than half said students on their campus can use the bathroom whenever they please, with permission required only as a formality.

And the survey’s results suggest that such realities persist despite growing recognition of the health consequences. More than a third of respondents expressed concern about the adequacy of kids’ bathroom-break time—and three in four said they were aware of bladder or bowel problems among kids at their school.

A separate 2015 study underscores the disconnect between discipline-focused bathroom policies and kids’ health. While 81 percent of the more than 4,000 elementary-school teachers said they allow kids unlimited access to water, 88 percent also said they encourage their students to hold their pee; 36 percent of participants, meanwhile, indicated they had a “protocol in place to encourage students not to use the bathroom during class time.” Also notable: About eight in 10 of those educators said bullying, misbehavior, vandalizing, or other negative behavior happens in the restroom.

Some experts point to bed-wetting—which according to the American Academy of Pediatrics affects 20 percent of 5-year-olds and can be a symptom of an acutely dysfunctional bladder—as attributable largely to kids holding in their urine or feces. This “voiding dysfunction,” as medical practitioners refer to it, can have severe, long-lasting physiological consequences—a swollen colon can damage the nerves feeding into the bladder, for example—not to mention psychological ones.

Despite the growing body of empirical research showing that holding it is bad for kids, schools’ mindsets don’t seem to have changed much. This is the case even though awareness among campus officials appears to be growing, if only slightly. In a 2012 survey, fewer than half of the 600 school nurses who responded suspected that children with frequent urination or bladder and bowel accidents were suffering from an underlying health problem. Roughly a decade earlier, in 2003, that number was even smaller when similar questions were asked of teachers. Fewer than one in five participants in a survey of Iowa educators suspected that children who demonstrated frequent urination or accidents were suffering from an underlying health problem. A third of them said they’d ordered at least one student requesting bathroom access to wait.

Christopher Cooper, a pediatric urologist at the University of Iowa who co-wrote the 2012 and 2003 studies, began researching the issue after noticing a high frequency of UTIs and higher rates of voiding dysfunction among his young patients. “It started to seem like, if for eight hours a day you [as a teacher] are the primary caregiver for these children, you’re missing a potential opportunity to pick up on some abnormal things going on,” he says. It’s hard for a kid to advance academically and develop socially and emotionally if she is constantly distracted by her bladder troubles. “Wetting your pants at school is one of the most stressful things a child can face or even imagine,” Cooper says.

One mother in the Seattle area, Maija Brissey, says she will never forget the day her son, who struggles with urinary accidents because of a rare medical condition, came to her at the age of 6 and asked her if he had a disease. Apparently, his classmates had convinced him that he did because he kept peeing his pants. Over the years, Brissey says her son started disengaging from classes and from his neighborhood friend group, retreating to his room right after school rather than playing with his buddies. “We’ve got to do a better job of making using the bathroom more comfortable for kids,” says Brissey, a nurse.

When they’re in elementary school, kids’ bladder systems—and the psychological responses to these physiological sensations—are at a crucial point of development. According to Cooper, children are “very good at ignoring [their bladder] signals” after being regularly denied the opportunity to go when they feel the urge. And the side effects—from incontinence to recurring urinary accidents—can put stress on the bladder, which is a muscle, and thus make it stronger and overactive. Cooper cited the high rates of bladder cancer among truck drivers, who often hold their urine on long drives.

[Read: The long lines for women’s bathrooms could be eliminated. Why haven’t they been?]

Suzanne Schlosberg, a health and parenting writer based in Bend, Oregon, started advocating for policy reforms and greater awareness after experiencing similar issues with her child. A few years ago, Schlosberg teamed up with Steve Hodges, a pediatric-urology professor at North Carolina’s Wake Forest University, to create an online resource for parents, therapists, teachers, and others seeking to help children who suffer from toileting problems. One of the inevitable challenges of this issue is that many people don’t want to talk about bathroom issues. As universal and mundane as they are, they can be embarrassing to discuss—not only for kids, but also for the adults who care for them. These days, Hodges says he often finds himself writing letters to schools demanding bathroom freedom on behalf of his patients.

Schlosberg says she has often had to contend with teachers whose bathroom policies encouraged her son to resist the urge to go. One teacher, she recalls, relied on the popular classroom-management strategy of rewarding kids for good behavior, in this case through the use of fake money. If students wanted to use the restroom during class, according to Schlosberg, they had to pay a “fine.” “My kid wanted to save his money, so he was having to decide between using the bathroom and saving his earnings,” Schlosberg says. Upon learning of her son’s issues, the teacher was quick to exempt the child, but stopped short of changing the class policy.

On K–12 campuses across the country, children’s bathroom needs are left in limbo because schools seldom have established policies, and teachers lack the training on how best to balance discipline concerns with kids’ needs. Just one in five respondents in the 2015 study of more than 4,000 teachers, for example, said they’d participated in “professional development” on bathroom regulations for kids. This lack of awareness, combined with sometimes-valid fears about misbehavior and academic disruption, leads to a patchwork of inconsistent rules that teachers might devise themselves.

What’s ironic is that most teachers are familiar with students’ bathroom woes—they seldom have the opportunity to relieve themselves during the school day, either. In fact, in a 2015 survey that asked teachers about the quality of their work life, its 30,000 respondents listed this problem as one of their biggest sources of everyday stress.

Article source here:The Atlantic

[nancygduarteus]

When Schools Tell Kids They Can’t Use the Bathroom

Most people probably take their bathroom privileges for granted, heading to the toilet in their home or office whenever the need arises without thinking much about it. But at school, children don’t always have that luxury.

A recent survey by the Society for Women’s Health Research found that schools often disregard kids’ restroom rights, often by failing to have a bathroom rule on the books and provide staff with education on bladder health. Absent official policies, parents and doctors tell me, many teachers come up with their own regulations, which anecdotes suggest can border on absurd. I heard about a teacher who allegedly stipulated that her students could only go to the restroom during class time once every two months, for instance, and read about some school districts routinely locking restrooms at lunchtime or after school to discourage misbehavior.

Schools seek to minimize the amount of time kids spend in the bathroom during class to ensure that they get the most out of their instruction, and generally restrict students’ access to prevent misconduct in the restrooms, where kids tend to be unsupervised. Well-intentioned yet overburdened teachers might adopt such rules to avoid disruptions and ensure that all their students are accounted for. But treating bathroom use as a discipline issue can have serious health implications, especially when a kid needs to go, but can’t.

Read: Using the restroom: A privilege—if you’re a teacher

A majority (84 percent) of respondents in the recent survey, which was distributed among school nurses serving all grade levels nationwide, said students often have ulterior motives when they ask to use the bathroom—maybe they don’t have to go and just want to meet up with a friend, for example, or perhaps they intend to skip the bathroom altogether and cause a ruckus in the hallway. A little more than half reported that kids misbehave in the bathroom. Underlying these assumptions is the fact that few schools have written policies on students’ bathroom use—just 8 percent of nurses said such rules existed, while fewer than half said students on their campuses can use the bathroom whenever they please, with permission required only as a formality.

And the survey’s results suggest that such realities persist despite growing recognition of the health consequences: More than a third of respondents expressed concern about the adequacy of kids’ bathroom-break time—and three in four said they were aware of bladder or bowel problems among kids at their school.

A separate 2015 study underscores the disconnect between discipline-focused bathroom policies and kids’ health: While 81 percent of the more than 4,000 elementary-school teachers said they allow kids unlimited access to water, 88 percent also said they encourage their students to hold their pee; 36 percent of participants, meanwhile, indicated they had a “protocol in place to encourage students not to use bathroom during class time.” Also notable: About eight in 10 of those educators said bullying, misbehavior, vandalizing, or other negative behavior happens in the restroom.

Some experts point to bedwetting—which according to the American Academy of Pediatrics affects 20 percent of 5-year-olds and can be a symptom of an acutely dysfunctional bladder—as attributable largely to kids holding in their urine and/or feces. This “voiding dysfunction,” as medical practitioners refer to it, can have severe, long-lasting physiological consequences—a swollen colon can damage the nerves feeding into the bladder, for example—not to mention psychological ones.

Despite the growing body of empirical research showing that holding it is bad for kids, schools' mindsets don't seem to have changed much. This is the case even though awareness among campus officials appears to be growing, if only slightly. In a 2012 survey, fewer than half of the 600 school nurses who responded suspected that children with frequent urination or bladder and bowel accidents were suffering from an underlying health problem. Roughly a decade earlier, in 2003, that number was even smaller when similar questions were asked of teachers: Fewer than one in five participants in a survey of Iowa educators suspected that children who demonstrated frequent urination or accidents were suffering from an underlying health problem. A third of them said they’d ordered at least one student requesting bathroom access to wait.

Christopher Cooper, a pediatric urologist at the University of Iowa who coauthored those earlier two studies, says he started researching the issue after noticing a high frequency of UTIs and higher rates of “voiding dysfunction” among his young patients. “It started to seem like, if for eight hours a day you [as a teacher] are the primary caregiver for these children, you’re missing a potential opportunity to pick up on some abnormal things going on,” he says. It’s hard for a kid to advance academically and develop socially and emotionally if she is constantly distracted by her bladder troubles. “Wetting your pants at school is one of the most stressful things a child can face or even imagine,” Cooper says.

One mother in the Seattle area, Maija Brissey, says she will never forget the day her son, who struggles with urinary accidents because of a rare medical condition, came to her at the age of 6 and asked her if he had a disease. Apparently, his classmates had convinced him he did because he kept peeing his pants. Over the years, Brissey says her son started disengaging from classes and from his neighborhood friend group, retreating to his room right after school rather than playing with his buddies. “We’ve got to do a better job of making using the bathroom more comfortable for kids,” says Brissey, a nurse.

When they’re in elementary school, kids' bladder systems—and the psychological responses to these physiological sensations—are at a critical point of development. According to Cooper, children are “very good at ignoring [their bladder] signals” after being regularly denied the opportunity to go when they feel the urge. And the side effects—from incontinence to recurring urinary accidents—can put stress on the bladder, which is a muscle, and thus make it stronger and overactive. Cooper cited the high rates of bladder cancer among truck drivers, who often hold their urine on long drives.

[Read: The long lines for women’s bathrooms are a fixable problem]

Suzanne Schlosberg, a health and parenting writer based in Bend, Oregon, started advocating for policy reforms and greater awareness after experiencing similar issues with her child. A few years ago, Schlosberg teamed up with Steve Hodges, a professor of pediatric urology at North Carolina’s Wake Forest University, to create an online resource for parents, therapists, teachers, and others seeking to help children who suffer from toileting problems. One of the inevitable challenges of this issue is that people often don't want to talk about bathroom issues; as universal and mundane as they are, they can be embarrassing to discuss—not only for kids but also for the adults who care for them. These days, Hodges says he often finds himself writing letters to schools demanding bathroom freedom on behalf of his patients.

Schlosberg says she has often had to contend with teachers whose bathroom policies incentivized her son to resist the urge to go. One teacher, she recalls, relied on the popular classroom-management strategy of rewarding kids for good behavior, in this case through the use of fake money. If a student wanted to use the restroom during class, according to Schlosberg, he or she had to pay a “fine.” “My kid wanted to save his money, so he was having to decide between using the bathroom and saving his earnings,” Schlosberg says. Upon learning of her son’s issues, the teacher was quick to exempt the child but stopped short of changing the class policy.

The reality is that, on K-12 campuses across the country, children’s bathroom needs are left in limbo because schools seldom have established policies and teachers lack the training on how best to balance discipline concerns with kids' needs.Just one in five respondents in the 2015 study of 4,000 teachers, for example, said they’d participated in “professional development” on bathroom regulations for kids. This lack of awareness, combined with sometimes-valid fears about misbehavior and academic disruption, leads to a patchwork of inconsistent rules that teachers may devise themselves.

What’s ironic is that most teachers are familiar with students’ bathroom woes—they seldom have the opportunity to relieve themselves during the school day, either. In fact, in a 2015 survey that asked teachers about the quality of their worklife, its 30,000 respondents listed this problem as one of their biggest sources of everyday stress.

from Health News And Updates https://www.theatlantic.com/education/archive/2019/02/the-tyranny-of-school-bathrooms/583660/?utm_source=feed

[oselatra]

DHS rule change threatens disabled care

ARChoices algorithm inspires state and federal lawsuits.

Some 4,000 disabled and elderly Arkansans who rely on a Medicaid waiver program to receive in-home services have seen their benefits cut by the state Department of Human Services due to an unannounced rule change.

The waiver provides attendant care, where someone helps a patient dress, bathe, eat and take medication. This in-home care allows elderly and disabled Medicaid recipients to avoid going to a nursing home for care.

"You will continue to have the same services," Craig Cloud, director of the DHS' Division of Aging and Adult Services, had written in a letter sent to beneficiaries of two Medicaid waiver programs near the end of 2015 announcing their combination into a single new one named ARChoices.

For some elderly and disabled Arkansans, that has proved true. But many others have seen their hours of in-home care reduced significantly.

Legal Aid of Arkansas filed state and federal lawsuits on behalf of waiver recipients who object to the change from DHS. Legal Aid prevailed in one suit. In a judgment entered last November, U.S. District Judge D. Price Marshall agreed that recipients were not given proper notice from the DHS that a change in allocation of Medicaid hours would occur, nor the reason for that change.

Marshall said in a ruling from the bench that the DHS did not give enough information "to allow a man on the street or a woman on the street to understand why the benefits were changing."

However, Marshall did not rule that the new method that the DHS is using to allocate hours is itself illegal. He simply said that the DHS needed to provide more information and notice before making the change.

Because Marshall stopped short of blocking the implementation of the new program more broadly, Legal Aid, on behalf of seven recipients, sued in state court in January 2017. On Feb. 6, Pulaski County Circuit Judge Wendell Griffen issued a temporary injunction, halting the hour changes for only the seven recipients involved in the lawsuit. The DHS appealed that ruling and the Arkansas Supreme Court is set to hear the appeal Oct. 26. A full trial in Griffen's court will follow.

Medicaid waivers that allow for in-home care save Arkansas a lot of money and, experts say, could save the state a lot more. The DHS estimates that it spends on average about $8,500 on waiver services vs. about $47,500 on nursing homes per patient per year. Seventy percent of the funds for Medicaid comes from the federal government and 30 percent from the state of Arkansas. Still, the gaping disparity in costs is why The Stephen Group, when conducting a review for the Health Reform Legislative Task Force in Arkansas, said the state's spending of Medicaid money on long-term care was too weighted toward nursing homes. Arkansas currently spends 35 percent of its Medicaid funding on patients who receive long-term in-home care, whereas the national average is 50 percent.

"If the Arkansas Medicaid program were to shift its expenditures on [long-term service care] such that expenditures on community-based represented 50 percent ... the Arkansas Medicaid program could recognize almost $200 million in annual, all-funds savings by 2021," The Stephen Group concluded in its report.

The DHS agrees that a shift toward in-home care is necessary.

"It is less costly, but it is also just better generally for individuals to be in a familiar home-like setting," Amy Webb, a spokeswoman for the DHS, said. "[In] an environment that makes them feel comfortable, they seem to do better, have a better quality of life, and are more likely to live longer and to live healthier."

ARChoices was created in this light as a way to save money and provide better care. Per recipient, it's estimated to cost $18,170 vs. $50,100 cost for a nursing home, according to the DHS.

Because of the assurance of the "same services" in Cloud's letter, Shannon Brumley, 44, a quadriplegic who had been receiving in-home care via Medicaid for six years, did not expect a change when he was notified about ARChoices in 2015.

Not announced in Cloud's letter was a substantial, if seemingly technical, change in how the DHS calculates the number of hours of care that waiver recipients receive on ARChoices.

Before ARChoices, a nurse would administer a long survey — called the ARPath assessment tool — that would estimate the numbers of hours that a waiver recipient should receive based on physical needs. Then, the nurse would have discretion to assign hours based on her experience in providing care.

For example, under the old rules, if Brumley answered the survey about his health and was allocated five hours a day, but the nurse knew he needed more, the nurse would be able to bump it up to eight hours.

Under ARChoices, a nurse has no discretion. After taking the survey about health, a patient is put into a tier of care by an assessment algorithm. The new algorithm compares the needs of all ARChoices recepients and assigns each one to a tier based on who needs the most and least attention considering the resources available to the DHS.

With the change, Brumley's hours were slated to drop considerably.

"They were going to cut my hours from 56 hours a week to 32 hours a week," Brumley said. "It's the difference between staying in soiled clothes and staying in fresh clothes. Getting a shower or not getting a shower. Getting fed or not getting fed. I mean it's the difference between, really, life and death."

Brumley is not a plaintiff in Legal Aid's state lawsuit, but he did seek help from Legal Aid in appealing the change in hours. So far his hours have not been cut.

Since the DHS relied solely on the algorithm, Legal Aid's suit asked the DHS to provide the data on how it determined hours for each tier. The DHS said it lost that data. Kevin De Liban, a Legal Aid staff attorney, also sought internal memos that would address the decision to do away with nurses' discretion — giving a motivation for the action — but he was told there were none. In response to that request, the DHS said some nurses had complained about certain patients getting too many hours. De Liban also asked if there was a study run by the DHS to see what would happen when the implementation took place. There were "absolutely zero metrics to measure how many people it's going to impact," De Liban said.

The DHS contends that a large number of beneficiaries had their hours go up, too — an estimated 42 percent compared to 47 percent who had their hours cut.

But, there is no data to indicate the magnitude of the change in either direction. The DHS has not tracked the degree to which hours increased or decreased.

There should have been notice given and time to comment on the changes before they were made, De Liban said. 

"They can't just decide, 'OK, one day, people are going to be decided according to nurse discretion and another day according to an algorithm.' ... If the state does something, but they adopted it without using the proper procedures, what they're doing is invalid," he said. The DHS has conceded that its notification effort was flawed, but says the new rule is proper.

"The [federal Marshall ruling] on this issue found the algorithm itself is valid [as] a tool. The court took exception to the notice we provided to beneficiaries," Webb said. "We have made improvements to our notices based on that case and are confident that the ARChoices tool is working appropriately and people are being assigned the level of care that best meets their needs."

The DHS has argued that the efforts were about standardization, and that, despite the lack of notice, it helps people on the program.

"We knew there would be changes for some individuals because, again, this assessment is much more objective," Webb said. "Before you had mostly nurses who were providing the assessments, and based on their personal experience and knowledge with similar patients they might say, 'Oh this individual needs 10 hours.' For the same patient, another nurse might say, 'This person needs 15 hours for the week.' Because we use an algorithm that assigns people based on similarities with others in a group, it's just, again, much less subjective."

Beneficiaries can also appeal the change in their waivers to the DHS administration. But such an appeal, De Liban points out, does not challenge the use of the algorithm as a method, only if it was properly applied.

"We've had, in the last few months, a dozen or maybe more hearings for individuals who are not part of the seven plaintiffs who are having to fight those cuts through the administrative process. The vast majority are losing," he said.

Brumley — who describes himself as a "44-year-old country boy" on his blog — has been able to hold off cuts by appealing his decision within the DHS's appeal process. In-home care, Brumley said, has been essential to his progress after a devastating motorcycle accident in 2001.

He did not die in the wreck, but it was close: He broke his neck and spine in 10 places, his lungs and brain were badly damaged, and his limbs were paralyzed. "The first two years, all we worried about was, 'Is he going to make it?' " Lana Brumley, his mother, told the Arkansas Times. The family shuttled Brumley to over 30 doctors in Memphis, and Brumley moved back in with his family on their farm in Lawrence County near Walnut Ridge. "If he needs anything, I'm right there all the time for him," she said. "If he was in a nursing home [during the first two years], he would have died."

The accident altered Shannon Brumley's life in profound ways. "I had to go from independent to totally dependent," he said. "Can't brush my teeth, can't brush my hair. I can't bathe myself. I can't use the bathroom myself. I can't feed myself." But, someone needed to. "His life totally changed and so did ours, our whole family," Lana Brumley said. Her job became making sure her son could live. And not just survive but live a full life.

The family rigged the entire house to accommodate him and his wheelchair. He writes poems on his computer, updating his blog by using a mouth stick to hit the keys. So Brumley won't develop bed sores, his family adapted their schedules to ensure that he's turned every few hours — an intricate process that must be done delicately, so as not to cause Brumley any pain. Lana even set up a baby monitor to hear Brumley from another room. And Brumley's father adapted the wheelchair to hold a gun — "I bite and it pulls the trigger," Brumley said — allowing the Brumley boys, including Shannon Brumley's now 17-year-old son, to go hunting together.

But this care is expensive. Lana Brumley pointed this reporter toward the cushion on his wheelchair: $2,500 and not covered by insurance. "You go buy stuff for him, and the price is going to increase by four times [a normal item]," she said. "You're so worried about, 'Am I going to have the money for this? Am I going to have the money for that?' "

And new problems have occurred: a brain hemorrhage led to paralysis on the right side of Brumley's body, an antibiotic proved toxic, and there have been infections. 

"It's a never-ending thing," Lana Brumley said of the subsequent health challenges and costs that grow from a single tragedy like her son's motorcycle accident.

After the accident, days became complex dives into the heart of American medicine, Lana Brumley said. They would go to a doctor and have to learn new phrases and terms and diseases. Then, she'd learn about the intricacies of health insurance, looking for some way to pay for it all. "You just love him, you just take care of him," Lana Brumley said. "You're trying to get the necessities that they need."

Six years ago, the costs became too high. "Financially, he couldn't afford it," Lana said, "That enabled him to be able to get Medicaid." Before that, he had been paying through his own insurance.

The Legal Aid state lawsuit hinges, mostly, on the idea of notice: Were waiver recipients properly informed of a changed?

But for Lana Brumley that issue is secondary. The new rules are unfair, she says. "Somebody like Shannon requires around-the-clock care, but if eight [hours per day] is the most you can get — for somebody in that bad of shape — give it to them," Lana Brumley said, referencing the eight hours per day her son receives vs. the approximately five hours per day the ARChoices algorithm says he should receive. "Why wouldn't you give it to them? Our government can do so much more, our state can do so much more by providing for the family members to take care at home, or allow them to hire somebody to come in."

DHS rule change threatens disabled care