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BlakeJordan

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BlakeJordan last won the day on September 2 2012

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  1. I think I would have been to the point of unconscious voiding by now if it weren’t for the medical aspects of my mixed incontinence. Due to widespread small fiber neuropathy (genetic, not diabetic) I have significantly decreased bladder sensation. This presents as both extremes. Either autonomic emptying (and lack of sensation), or the bladder going into a strong spasm and overfilling (also lack of sensation until I’m at nearly 2x normal capacity). The latter leads to overflow incontinence and/or kidney risks. It also leads to a a need for concentrated effort to release and fully emptying. in my experience I tend to slowly go back and forth from one extreme to the other. On the spasm side, I tend to make a concentrated effort to void every hour or two, otherwise it becomes increasingly difficult. I can also end up in situations where a change of position tips gravity and causes a flooding issue that can catch me off guard. Because of this I’m always heavily padded for those floods, otherwise social interactions would become incredibly stressful. I also have to be careful not to go too long in spasm mode, as that has led on more than several occasions for the need to cath. At this point it’s mostly frustrating rather than an inconvenience/obstacle. I’m still trying to figure out why about once a week I’ll wake up completely dry and have a bladder bursting at the seems..that can’t be good health wise. The silver lining is the destrouser muscles are exhausted for the day and it makes daytime discreet options available due to a more consistent voiding volume. During my “what to expect” journal and journey i hypothesized that this automatic voiding goal should be achievable through conditioning and it should be independent from any pelvic floor strength, which we want to keep and even strengthen for physical fitness/posture/functional reasons. All this to say keep at it Oznl
  2. B. I’m surprised sleep quality hasn’t come up more in this thread. If you experience A, that is remembering a dream no matter it’s content it’s is a sign of light/poor quality sleep. I would much rather be in the B camp, if only because it means I have gotten a great nights sleep, and by not waking up even if the contents of a dream were pee related, it means by subconscious has made peace and doesn’t concern itself with such things; a marker of the hard work it takes to trust ones diaper won’t leak in bed. Having night terrors almost nightly since as far back as I can remember I cherish those B nights. Pee dreams have long since stopped waking me, but the adrenaline fueled night terrors are still nearly daily. Which inevitably leads to clenched muscles, including bladder, and having to figure out how to get my body to calm down and get an accurate read on my bladder, and if it’s at capacity getting control over it to release so it doesn’t wake me later, all the while trying not to flood my bed, have to get out of bed (pots/more adrenaline due to change in blood pressure). Oh the joys of neurogenic bladders in combination with dysatonimia and small fiber neuropathy. Leaves the few nights a month where B occurs to “be” thankful for. XD
  3. I try for every day, but in reality it ends up being 5/7 days. I am bare down there, permanent hair removal I had completed in the window where I temporarily regained continence; for unrelated reasons. Mobility and safety issues often limits when I can bathe. As such using no rinse soaps, making sure I change 4x/day, stay hydrated and when I do shower I scrub pretty aggressively all helps. There are certain foods, and meds I take prn (like vitamin B ) That I know will have a strong odor. I stuck with 4x/day change not just because it’s easier for me to schedule changes due to lack of awareness, but also because that keeps odors to a minimum, especially if dehydrated. This in turn helps skin health, and well, it becomes a background task, like taking meds. I also use Northshore pull-ups when I’m more active/exercising etc as I’ve found with my biology I have limited urine output when I’m exercising. It also acts as a commitment device of sorts to change out of the pull-up soon after, which helps with other odors. There are many tools out there who’s target market is low/limited mobility. This includes hygiene just as much any other market niche. I hardly ever use barrier creams, powders, and rarely get rashes. Part of that is the skin toughening up, part of it is being hairless and not having to deal with razor burn/allowing for that scrubbing I mentioned earlier. And part of that simply comes to what, when, how much you consume and your own biology, along with the microbes that live in that area. This comes with time and IMO is going to be unique to every individual of how often they need to shower “because of wearing diapers 24/7”. The tools I use when I can’t shower we’re built over time and trial and error.
  4. Another day, another year…Update time! (Scroll to the end of this post for the bottom line) The past year has been just as crazy with health issues and like most of the rest of the world a time warp. I have more confidence in my theory that comorbidities influence my level of continence. For me it seems to be a finite resource issue, albeit one that is heavily linked to my autonomic dysfunction and whatever it’s root cause is. I’ve found that because I have to consciously control many parts of my body functions that should be automatic/autonomic through intentional conscious thought/control I have better stability when I don’t have to be hyper-vigilant on the status of my bladder function, capacity etc. I have also noticed that if there is an acute insult/injury to my body I recover faster when I use diapers and let the incontinence take it’s natural course. The closest analogy I have is if you had to remember not to blink…think weeping angel episode of doctor who “whatever you do, don’t blink!” It takes mindful attention not to blink, and thus reduces resources available to perform other tasks. Likewise I have confirmed that like “spoon theory” I have to pick and choose what I put those resources towards. As mentioned in a previous post my eye issues have been most impactful on the day to day function/quality of life. I’m currently recovering from eye surgery, the 2nd of 5 eye surgeries that will span the rest of this year- six months in total. I have noticed significant reduction in my continence after each surgery, and then a slow increase in my continence/control as things heal back up and I get to my baseline stability for health. I’m at the point where I can predict how much control of my bladder will “cost” and if I want to put those resources towards that control or not. Going by medical scopes, this definitely qualifies as incontinence as people who are not incontinent don’t even think about putting resources towards monitoring their bladder. Just like people who don’t have autonomic dysfunction don’t have to think about/practice blinking (no, seriously after 6 years I am STILL practicing blinking, as my my body will lapse back into not blinking if I don’t keep reinforcing the habit, using triggers in a similar fashion as we talk about for incontinence training) While I have figured out how to “switch on” continence, it’s a manual override of the default state and costs me every time. How much of this applies/could be used for the opposite goal for our target audience I am unsure of but am becoming more and more convinced that continence or the lack thereof is just as much neural pattern, habituation, and momentum (what you did yesterday influences what you do today and who you will become tomorrow and in 10 years), as it is physiology. This leads me to believe that in continence, and most autonomic functions can be changed through the practice of manual override, which leads to neural plasticity and eventually handed back over to the brain stem and autonomic functions. This theory is being indirectly tested with the eye surgeries I’m in progress of. Being an N=1 in the medical world I have multiple case studies from multiple fields of research/medicine tracking my outcomes. In a nutshell I’ve become a point of exploration and expansion on how plastic an adult brain can be. I am working with many of the world’s top experts as I have a yet to be understood ability to activate neural plasticity typically only seen in children on demand. Basically coming back from what has historically been considered “factually impossible” to reverse, control, and change. I have long had the ability to control my heart rate, blood pressure, brain frequency etc. I mastered meditation in my youth to the same level of monks and other masters of meditation. I have also used dual n=back programs and rapid skill acquisition techniques in combination with meditation to activate neural plasticity, and in Conjunction with ketosis, fasting etc can increase brain derived neurotrophic factor, leading to neurogenesis ie new nerve growth and connections I. The brain, changes in brain/body connection, cellular regeneration/repair through autophagy in the body, an uncanny ability to make changes/progress as an adult in physical motor function/pattern that were previously thought impossible (due to cerebral palsy). While even the top experts are at a loss for how/why this is possible, it does demonstrate that it is and what was previously accepted as “being factually impossible” is being disproven. This all comes back to “can you make yourself incontinent?” and more and more I am leaning towards “yes”. With the theme of “There and back again” I am also leaning towards the opinion that anyone can do this, and come back/at least have physiological choice of changing the default mode of operation, be able to change that default, and be able to create an override “button”/alternate mode. To oversimplify I am becoming more and more confident that physiological incontinence that can be tested, quantified, and confirmed is achievable for most people that read this, as is the ability to reverse and/or temporarily override the default mode of physiological/autonomic function (now don’t blink, go ahead and swallow, and remember to breathe). Sorry about that, but I think the point you just experienced was worth it. How to achieve this o. A foundational level is a different approach than what I practiced, is in the 12 month guide and suggested in these threads. It is in essence working to build a toolbox for cognitive, a neural/physiological flexibility, plasticity, and motor patterning. A toolkit who’s uses are applicable to ones everyday life, healthy aging, adaptation, and just coincidentally can be deployed/applied to changing continence. This theory, if proven out should be replicable step by step, measurable, quantifiable, and learned by anyone. A standardized holistic method, in the vein/level of any other skillset you would learn. Bottom line: The toolkit I have put together to adapt/deal with my health issues and that has drawn interest from multiple experts following my medical progress leading to case studies, lectures, used as examples in classroom by the experts who are working with me (at this point just as much academia interest as clinical) can be used for our purposes as well. More to come, and questions are welcome, as always.
  5. Epilepsy will do it, but I would not wish that on anyone. Unlike @~Brian~ I feel safer with rails due to my drug resistant epilepsy. I don’t have them at home, but often wish I did due to breakthrough seizures which often come during sleep. To be honest, I’ve not actually fallen out of bed due to a seizure, but have come close and have broken my arm, hit my head, and more during seizures. I suspect that I fall somewhere on the autism spectrum, and like many find things like weighted blankets, smaller protected spaces, compression garments, low sensory input environments etc. In my experience diapers fill a similar role of “safety”. Like Brian, my preferences for bed rails come out of the result of trauma. And like Brian I feel lucky I like diapers as my biology, from birth dictated that I would become at least partially reliant on them for the rest of my life, even had I never pursued incontinence.
  6. Any updates on this, or any alternative app suggestions for iOS? Accessibility issues make it difficult for me to get in front of a computer these days, so having an iOS option would be extremely helpful. Thanks!
  7. In my experience and those I’ve gotten to know who embark upon this journey... We have found that this need is at its core, a need to match up our bodies with our identity. I personally don’t think sustained desire for 24/7 wearing could last beyond a couple months if there wasn’t a drive within that pushed us to wear to feel “normal”, it’s this need to feel normal that pushes us to continue past the hype and fantasy. We are, without wearing at a lower level baseline of well being. Speaking again from the collective experience, what tends to push those of us that fit into this category out of diapers is unforeseen life circumstances. Usually it’s the lesser of two bad options. Sometimes relationships, sometimes the direction that our life takes and the inability to live the rest of ones life as they need, it could be finances, or it could be health issues, as was the case in my original run. To rule out variables on an unknown disease I ended up retraining (this was after 18 months in, and over a year of seeing docs daily). As it turns out, that particular disease I was the first documented case, and it eventually led to the domino effect of downstream issues, specifically dysatonimia and small fiber neuropathy that ended up taking that choice away due to nerve damage of the bladder. Life is funny sometimes, I know of a shrimp boat captain that likened it to a box of chocolates, you never know what you’re gonna get...
  8. I have to disagree with you here. It’s human tendency to remember the hits and forget the misses. We find patterns and correlation in everything. Like buying a new car, all of a sudden everyone has the same model on the road! I honestly think that diapers have a stigma of being only for babies and require a great deal of caregiving. This is true for babies as much as it is for adults. We tend to think of adults in diapers as extremely high maintenance. Either due to disability or age related illnesses, the assumption is that diapers are one of just many additional issues a caregiver (volunteered, hired, or forced) must deal with. There is zero expectations that an adult in diapers can care for themselves in any meaningful capacity, let alone change themselves. The vast majority of incontinence products, manufacturers, and advertising reflects this. Most here, including you may know that I was half “forced” and half enabled/desired incontinence. I still believe that at “best” had I no interest in diapers or previous attempts at diaper dependency I would have delayed the inevitable, as the issue is due to cerebral palsy, autonomic dysfunction, seizures, and systemic nerve damage. And yet... I live independently, can walk, drive, work (when health allows). I change myself- with one hand nonetheless and defy the mental model of “a disabled adult in diapers”. In fact, one of my biggest frustrations has been that adult diapers are kind of inaccessible for someone who deals with other physical limitations. The biggest change is make across the board is a 3 tab system, with the middle tab/tape being for initial fitting/holding. The second biggest gripe I have is the lack of options for onesies, bodysuits etc that have cuts for women with any social life or interest in fashion. We have either abdl or high cut , poofy unisex options. Where’s the scoop neck and hip hugging onesie dagnabit! Okay, that turned into a rant, sorry... my point stands that there is a ton of baggage associated with adults in diapers and in the end it’s a mental heuristic, a shortcut or shorthand for “my role has changed from partner to caregiver‽” So, I think what was going on is likely shorthand for I don’t want to be your full time caregiver, and our life circumstances doesn’t allow for help, or if you become completely physically disabled it changes our sex life/intimacy/physical connection. Okay I’ll stop now. Haha. Sorry for the rant, /agitated
  9. Hi all, I fairly recently lost what continence I had due to systemic nerve damage that is still spreading slowly and steadily. I also have cerebral palsy, postural orthostatic tachycardia syndrome/autonomic dysfunction, amongst many other conditions, which makes the need for high absorbent and highly re-adjustable a must. I currently have 2 diapers and 1 booster that works well for me. The megamax and xp 5000., along with the the Northshore boosters in various sizes. I know this falls under durable medical equipment. As far as I can tell neither Northshore nor medicalxp are contracted with Medicare a,b,d or Medicaid. I have an already established history of incontinence with several referrals to urologists including typical testing and failed medication trials. This is a couple years old and since then my incontinence has only gotten worse and thus my increased need for protection has only been exasperated. There are however many recent and numerous documented accounts of this within medical and hospital records over the past several years. So my question is, how does one go about getting a preferred incontinence product covered by Medicare/Medicaid in the United States? Who writes the prescription and who can fill the prescription? What happens when the e product written for doesn’t have a contracted supplier and no alternatives are feast? To elaborate.... What happens in the case that the preferred/functional products are sold from vendors/manufactures that are not contracted with Medicare or Medicaid. Due to my physiology combined with my physical limitations there are specific products that provide the necessary reliability required, along with the required flexibility and durability to wear during the day and night. I believe all of this falls under durable medical equipment, but I’m not sure how such a situation is handled when the supplier is not directly contracted nor resells see vendors that are contracted with Medicare/Medicaid. Honestly I have avoided confronting this shit head on in hopes that things will go back to normal. As of now I really don’t have a choice in the matter of whether I can wear or not wear and experience tells me that anything less then the top-tier premium products will lead to disastrous flooding concerns me, and is reason enough that I have avoided confronting the issue head on. Alas with multiple other medical conditions deteriorating it’s become necessary to pursue the logistics of getting at least some of my incontinence products covered by Medicare and or Medicaid. I know that parents here products are all but useless for me both inform function and design. In my mind I feel like this should be covered by Medicare part D and require a prior authorization, but I’m not sure how to go about doing this or which specialist I should have write the script and provide the sporting documentation considering that I not only need protection but what most insurance providers would consider excessive premium protection simply due to the fact of dexterity issues due to cerebral palsy as well as autonomic dysfunction which has a strong side effect of my body not retaining fluids thus leading to an increased need for I absorption protection. I suppose my confusion is most prevalent and how to deal with manufacturers/providers that are not contracted with insurance. Most Medicare/Medicaid coverage is dependent on contracts, even if they happen to be out of network and require a pre-certification/pre-authorization. If they are not participating in any insurance coverage whatsoever, how does one go about obtaining such products through insurance reimbursement? Thanks!
  10. Like others have said, it really depend and individual suggestions aren’t applicable here. Perhaps one day forums like this an be a light of United, knowledge and wisdom for those that seek to understand. I believe that last part is the key- seek to understand. Whatever this is and the reasons we are drawn to it are far too complex to be put into a single label or rigid box. I know I’ve said this before, but I really don’t think “kink”, or “Paraphilia” is a good descriptive label. I believe that for many of us here it is closer to an identity dissonance, and all we want is to feel normal. The fact that the parts of the body and steps, tools, and objects needed overlap with a stage of life most would never want to revisit, and the fact that it also overlaps with organs that after puberty have a dual purpose for sexual pleasure and reproduction introduce a cognitive dissonance of pure innocence and sexuality. Anything that is central to, and continually present to the netheregions is bound to overlap with sex at some point of worn long enough past the point of puberty. This in and of itself does not make it sexual it simply is a fact. For me diaper, nappies, whatever we call them are not sexual in and of themselves nor ill they ever be. The fact I wear them 24/7 makes it impossible to completely separate from any act of sex, be it physical or fantasy. The one thing I can say in my Cade is there is a strong overlap in submission and relinquishing control, trusting my safety to another. This presents in both sexual fantasy and in the incontinence desires. Though even that overlap is likely coincidental in its varied manifestations and I consider that need and desire a personality trait and deep rooted unfulfilled needs that never got addressed and is now part of my ego. I recently read a news book “Blueprint” about dna and it’s effects on the outcomes of who we become. Basically an argument of nature vs nature. Sam Harris did a podcast episode with the author recently (making sense is his podcast) that is worth the listen. So why oh why did I get into the nitty gritty details of the why I am the way I am in this post? Mostly to prove the point that whatever got you to this need is not clean cut and is more nuanced than can be currently known. To say that you’re valid, and you’re okay. And to reiterate that what this decision ultimately comes down to on my experience is if your partner had the desire to try to understand what makes you, you. And is okay with incomplete information, decanting opinions and conflicting information and understands that what they find may not be satisfying, conclusive or definitive. Often I’m finding myself needing to remind myself that the deep dive into attempting to understand one’s identity is something most people have never done for themselves let alone for anyone else. If someone tries to understand someone else before trying to understand themselves (and being at peace with not having complete answers) what comes of trying to understand another can be very damaging for not just the other person but also themselves as they are suddenly confronted with question they’ve never had to ask themselves before. On the flip side, if you happen to be in a relationship with someone who had done that hard work already such a journey of mutual acceptance and knowing who is under the mask can be one of the most intimate experiences of a lifetime. There is powerful in the connection that comes with pure authenticity and vulnerability. To know and be known and within that knowledge an intrinsic understanding and trust that whatever comes up, whatever is found makes you no more less valuable, lovable, valid, needed and wanted. If I had more time, I would have written less. I wish you all the best to know and be known
  11. Yup. Definitely. More and more common these days that even if I have sensation it is only within a few seconds of a release. It seems my rate of dribbling is now at around 50% where wetness is occurring but no real feeling. If I try to draw my attention to it I honestly couldn’t tell you how full my bladder was, or if I was dribbling at that moment. What is odd to me, and departs from your report is that when an urge strikes at my awareness it is inevitably too late for any meaningful intervention. I recall reading somewhere that the average stream duration in mammals is about 21 seconds. I seem to typically have about 5-7 seconds of sensation, when I have it all. WhT I’m getting at is that by the time N urge is registered and I take notice, have an opportunity to take action I’m already T the 4 second mark. I imagine I could try a kegal maneuver but considering sensation discontinues a second later I would have no real feedback. The only exception to that is if I happen to be in a position change or moving, occasionally things clench for a second before what feels like unbearable pressure finally triumphs no more than a couple seconds later. I can delay things by a few more seconds if I’m already clamped down, but history tells me that I no longer get a full closure. Rather a 90% reduction; an imperfect seal. It very is an odd level of awareness. I question what the body is trying to do by giving me a signal but only to have it be too late. History says that the progressive lack of signaling will continue in waves until they are no longer sent or until they are ignored. On a random note I find that on nights where my chronic insomnia is at it’s peak, spending what little sleep I get in that state between dream and the edge of consciousness i occasionally find myself with an aching bladder. The other end of the spectrum for the neurogenic bladder which thankfully is being experienced less and less.
  12. Will do! I ordered her yesterday, should arrive Wednesday. I’ll keep you updated!
  13. Thank you! I do believe the first one fits the bill, so to speak. It’s very close to what I had in mind!
  14. Hi everyone! I’m looking for a teddy bear to sleep with. The COVID 19 isolation (I’m in a high risk group), lack of touch, and finding the want/need to hug something while I sleep led me to the idea of a teddy bear. I’d like the surface to be fairly smooth, hold heat, or be able to be heated in someway. I want it to double as a body pillow for my upper half, and with some weight to it. Medium firmness, think memory pillow level of firm, but impressionable. Thickness of a medium large pillow. Prolly shorter arms, so I can hold it close. Would be nice to be able to to have its “skin and fur” be washable. Once upon a time I saw a pillow that was super to perform such a function. Even had a heart beat of sorts, so that type of thing is a bonus as well. I’m not super set on any style, color, and open to other stuffiies. My hope is this can help with emotional comfort/touch. Anxiety (heft/weight, like a weighted blanket) and physical pain by giving my limbs somewhere to rest. I know those oversized bears exist but they seem too cumbersome/thick/novelty. I dunno if such a stuffie exists but can’t imagine I’m the first one to want something like this, be it abdl marketed or a product that has risen in response to a need due to the pandemic. If it matters I’m in the US. I’m about 5 ft 9.5” petite frame (weight around 130 lbs). Any and all suggestions are welcome even if it’s not exactly what I have in mind. I have no idea what pricing would be for an item such as this, so leave that open. Thanks in advance!
  15. Agreed. That’s where I’m at. There are a few surgeons in the US, and at least a couple in India. At least in the states, there is still reluctance in using the technique other than a revision. Though this is slowly changing. Still it seems aesthetic technique needs practice for any US surgeon and although mostly positive there are horror stories from surgeons in India. I would say that before incontinence tipped into being problematic for hair removal, I was 70-80% complete with hair removal removal at the surgical site. I would love to see some follicle scraping techniques be implemented here as well. For now I think I’ll simply bide my time, wait for the technique to become slightly more commonplace, a higher prevalence of laparoscopic surgeons willing and practiced in the technique, and for Covid-19 to become more predictable for planned procedures. I imagine that 5G and telemedicine will help as it seems that the limiting factor pre-COVID was laparoscopic surgeon availability. Thank you for your reply as it helps confirm my own conclusion on the best solution. I really do appreciate it!
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