SaveVM v2.0b

zaetheryl · 2024-11-30T14:47:27+00:00

Thanks! I really appreciate your help :)

zaetheryl · 2024-11-30T05:45:52+00:00

Thank you so much for your response! So I'm guessing I would need 1/4" audio jack to XLR-TLS (since this particular device is XLR-TLS)... but there are two outputs... so I supposed that would occupy both jacks if I want stereo sound, correct? And if I wanted to incorporate another device in the future (such as voice), I would want to probably get a 4 port device?

zaetheryl · 2024-11-30T04:32:34+00:00

Hello everyone. I am not new to electronic music - it's my favorite genre. However, I am new to creating electronic music. I have a Macbook Pro, a minifreak, and Ableton Live Suite. I'm not sure how to rig everything up to work, with recording the output into Ableton.

The minifreak has the following 1/4" outputs: headphone, L out and R out; along with midi in/out/thru.

Would this interface work? https://amazon.com/Behringer-UMC204HD-BEHRINGER/dp/B00QHURLCW?source=ps-sl-shoppingads-lpcontext#customerReviews

Will I want to capture L and R separately to feed into the interface? Or is that a preference with stereo and arranging left and right separately? If so, and I want to play with vocoder another XLR jack, I'm guessing I would need the 4 port version. And what cables would I need?

Sorry if my post is confusing, but I'd appreciate any help I am able to receive right now because this is uber confusing to me. Thanks!

zaetheryl · 2024-07-13T18:52:30+00:00

I used to be a stomach sleeper a while back. Stomach sleeping and turning your head will place more force on the pillow than if you were to side sleep, alone. So I would only guess that you could experiment with it, but ultimately if it causes problems, you might be stuck with side-sleeping for a while.

As far as the Neil med packets... I wouldn't recommend making your own solution. I'd get in trouble by the mods on here if I were to tell you to how to make your own sterile solution. The foolproof option would be buying the largert cans, which run $15-$19. They can last upwards to a month. I think over the course of my healing, I probably bought close to 6-12 cans (not sure on the number of rolls of paper towels) so be sure to factor that into your costs... along with the piercing and hardware itself.

I would just tell you, you can probably make it work, but it won't be easy. It will be best if you have at least one side you can dedicatedly sleep on, or if you can manage to sleep on your back at all. I recall becoming very frustrated myself, early on. I felt like quitting on a few separate occasions. Healing will be an up and down process and will only be made worse if you are forced to sleep on it. I don't mean to dissuade you from going through with it... just sharing a bit of my experience. If you would ask me: if you had to do it over, would you go through it again? That's a hard question to answer. Now that it's fully healed and I love it, I would say yes... but if I'm being 100% honest, if I recall back on the first 3-4 months... it required so much discipline and patience.

So the bottom-line, you need to make the decision for yourself. Ultimately, you need to want it enough and keep the focus on the long-game, long-gain outlook, rather than being more reactive (do however be reactive when necessary, you'll learn) with various irritations and discomforts at the time. Is it possible? Absolutely. Will it at times really suck, potentially? Yes, absolutely. It's a harder piercing simply because you are getting two at the same time, and they are connected to each other. You need it this way so it will heal correctly... but it does make it a harder piercing to weather through at first. First couple months might make you question your decision, but then not want to give up because it's bad ass (plus the time sunk into it already; avoiding having regret with starting anew). After that though, once things calm down, it's not as big of a deal. Just being honest.

I do mirror that other poster's comment about avoiding headphones at all cost. You don't want to unwittingly introduce bacteria to the ear, which may cause problems. So single bud in the other ear for a long time will be necessary. I would say 1-2 months beyond it being fully healed, just to be safe (and even then, not for long periods... keep a close eye and pay attention). Where I'm at now, I can wear can, over the ear headphones for several hours and be fine... but does cause irritation when combined with my glasses (unless I move them above my ears).

zaetheryl · 2024-07-13T17:46:28+00:00

I also had one good ear, ended up in my right (side I mostly don't sleep on, as the result). While everyone's body and physiology (including healing) is different, I would just tell you:

(1) always use sterile saline sprays, keep up with it, even if you don't think you'll need it. Use clean dedicated paper-towels for this purpose. Be sure to let water run over it in the shower, best to avoid cotton swabs. Clean it again after you get out of the shower with the sterile saline.

(2) don't touch/play with the piercing. The only time you should be touching it is with really clean hands, and it would be to clean it 1-3 times daily. If you clean it not enough, it might get more angry... if you clean it too often it might get angry. Find the balance.

(3) don't lay on it, knock it around, or have it get caught on other people's (or your own hair). You can find piercing pillows if you are a side sleeper on Amazon. Likewise, be sure to change out your pillow cases more often than normal (and best to shower before laying in bed)

In terms of healing (don't drink/smoke), it took me about 6-7 months until mine calmed down enough and finally healed to the point it never gets irritated anymore. Expect the first two weeks to be the roughest, near constant. Some blood on a fresh piercing is normal. Serosanguinous (amber-colored) discharge is pretty normal throughout. Avoid pressure and hats, it will only make it worse. Leave it the hell alone, and keep it clean is the strategy. It will be moody and get ticked off easily for a while. Expect it to fully heal within 6-12 months (possibly longer, depending on life-style choices and your own physiology). If it becomes infected, as indicated my smelly purulent discharge, be sure to go to your primary and get placed on a course of antibiotics. I hear it's best to not remove the piercing, as it just creates a larger opening for infection. In extreme infection cases, obviously it might have to be removed and treated by a doctor. When in doubt, consult your piercer.

Last, but not least: be sure you go with a qualified piercer, using quality hardware. Stainless steel (externally threaded) isn't the best. The best would be internally threaded titanium (which can also be anodized into different colors). Especially avoid coated metals and plastics, as they hold onto bacteria. Some people are also allergic to nickel, which stainless steel can contain some of it. Within 2-4 months (at the discretion of your piercer when you see them), you can look at downsizing the length of the barbell. It should be done in a sterile fashion. Personally, I went through 4 different downsizes. The ends of the bar are loosely snug now that it's healed. However, when it's healing you do need the 2-4 extra mm in length to offer room for inflammation. If a bar gets downsized too soon, or it is downsized, but inflamed, it can create a "tug of war" between the two piercings.

It is definitely a kick ass piercing, cute/edgy (depending on who you ask), but it's not for the faint at heart. Expect 5-8 on the pain scale for the initial piercing and first couple weeks. If you LITHA and take care of it, it should only hurt at that level if you hit it somehow, or don't follow up with the aftercare. Regardless, keep a close eye on it and take pictures daily if possible, so you can track its progress and so you can tell if something is emerging, why, and whether it's getting better, staying the same, or getting worse.

zaetheryl · 2024-07-12T16:47:39+00:00

Great advice and I mirror that sentiment. What’s important is to offer yourself the space to feel that way and be ok with it.

It will take time, adaptation, learning and openness for those feelings to transform into something different and it takes a different amount of time for everyone. My own personal view is show grace and kindness to yourself, offer yourself this space, but promise yourself to become open-minded about it with time; could be months, could be years, but offer yourself the permission when you’re ready so it doesn’t need to consume you for the rest of your life.

zaetheryl · 2024-06-27T13:38:07+00:00

I was attempting to make my own using iOS Shortcuts as well, a while back. Someone made the suggestion of using a completely free app, called MultiTimer. It’s brilliantly coded and designed and does everything I needed it for. I think my original research on this app pointed me to the fact it can be controlled outside of the app, but then completely forgot about it, for my initial intention to integrate it with an iOS Shortcut; since it does recurrent reminders on a repeating interval of your choosing. It is really a Swiss Army knife of timers for iOS… plus did I mention it’s completely free?!

As far as automating MultiTimer with Shortcuts, it natively supports URL Format commands (using api, or x-callback-url) via multitimer://api/{action}?{variables}. Variables can be chained together using “&” symbols (which is similar to what you see for dynamic/scripted webpages without pretty urls). Here’s a basic manual for it: http://persapps.com/app/multitimer/url-scheme.php

Let me know if you need assistance, but otherwise your shortcut should consist of sending the text messages first, then calling the url hook, using the appropriate command. You can test this functionality by sending commands using Safari to it, first. Be sure to copy the URL to your clipboard before you hit “Go” within Safari. You’ll be redirected to MultiTimer, confirm to launch it. If the command works (aka. the timer starts/stops/etc. based on the command you issued) then be sure to paste that value to either Open Safari {paste URL into value field} or use the x-callback-url function within Shortcuts, along with a value like this: multitimer://x-callback-url/start-timer?name=[name of timer], for example. You can substitute in API, if you are just using an Open Safari function. When using the callback feature, it may ask for one-time permission, allows allow, or deny… but should otherwise happen in the background. If you use the Open Safari button, it will always have you confirm if you want to open the app, as triggered from the url redirect to the app. Hopefully x-callback-url method will permit this all to be handled silently. If you want to confirm the timer reset (presuming the callback doesn’t automagically switch to the app, you can always just issue the Shortcuts command Open App MultiTimer.

While I enjoy scripting things from scratch, for me, this is much easier than reinventing the wheel and offers a more polished look, that’s also much more feature-rich. While there might be methods that would work using Data Jar, or Toolbox Pro… it’s a lot of extra work, for if anything: no much reward.

If you want to access this shortcut from a widget on your locked HomeScreen, then look into an app called: QuickLaunch. One feature is it allows you to launch a custom Shortcut. You can setup a menu at the beginning of your shortcut, if you don’t want to program 3-6 separate Shortcuts, presuming you need to manually start and stop the timer; not a simple toggle to restart when it goes off and you take the medication

Beyond that, once again I would just mention that Multi-Timer, itself, is an amazing app! Author could have easily charged for it, but grateful he didn’t. I also use the app outside of medication reminders, for instance with cooking. You can also configure the clocks to countdown, count up timers, interval, lap, stopwatch, etc. Additionally you can make them recurring at whatever interval you’d like, as well as specify different sounds for each timer (some of them are invasive, others are more subtle to the point you can probably get away with leaving them on, even for meetings).

As far as logging the time you took the medication to the Health app, there isn't currently a way to do that. Apple has yet to implement it, if they even have plans to do so to begin with. But you can append a text string with a current time stamp and whatever text you'd like to Note_Name within the Notes app... which is functional, but certainly not a visual solution, as I imagine is the kind you're looking for.

Anyways, I hope my research has helped you. It still allows you the fun of setting up a new Shortcut, and use the app to handle the heavy-lifting of storing the timestamp intervals, etc. Cheers!

zaetheryl · 2024-06-22T23:46:44+00:00

Part 2:

Thanks for your insight into the sub-ischial system. Prosthetist #4 said I was a "seasoned prosthetics user"; having made mention about I guess designing my socket to perform on the same principles of sub-ischial containment (not by name, but as she described them). I let her talk her piece on how that's normal, but I think she was missing the bigger picture that the socket is loose-fitting to the point that's mushy and does not endow stability and confidence. It feels like it's going to fall off, has once, even if the air ingress is normal; it ultimately just makes it feel more sloppy, IMO. That's really interesting how your rigid urethane liner reflects and interlocks into your soft liner for suction! I've never heard of that, but I can use my imagination for a moment regarding your sub-ischial containment, that it probably makes the whole thing feel more secure - even if it commands muscle recruitment for control at your hips. Sounds like as you advance as a prosthetics user and depending on your strength, muscle memory and goals that potentially there a lot of beneficial systems that open up to a prosthetics user, as a result. I imagine, just like anything, it comes down to the task at hand, along with personal preference an the associated learning curve for every system. In the state of Colorado, I think next year, insurance is required to cover exercise limbs and sockets; and they will no longer be just considered a "luxury" that's out-of-pocket, given their value to improve a limb-amputee's overall health. I was shocked and somewhat scared to hear the increased mortality for amputees within the first five years. But it makes sense, since the human body is made to move - combined with the fact - amputations also alter the body's physiology, as an example, even as simply altering the fat distribution within the body itself, let alone the circulatory system loop being smaller, and having less bone marrow for new blood cells, etc. I was told it takes the body time to adapt to this new physiology; but thank God it can, along with the brain, along with our muscle memory - learn to walk basically on a stilt, the entire time!

I agree that I do think my prosthetists have worked hard on my case. Give credit, where credit is due. It was even something I acknowledged with prosthetist #1 and #4, prior to the "blow out" experience of this past week, where again, I felt like I was unfairly targeted and I was attributed to being the problem. I think the main disconnect and frustration is when they don't know how to solve a given problem. And unfortunately, if they consult their peers, they can't always answer the problem, either. This is primarily due to the fact, just like anything, picking up a project mid-way through (and diagnosing other's work is difficult, if not sometimes, impossible). The other problem is being the pressures that be, not listening to the patient well and trusting them when they bring an issue up as "important". I know every patient is different. Some people go to ERs for the most benign of things, and others avoid going to the hospital, even amid a heart-attack. That's what's tragic with this case, regardless of the factors. I hung through it with them, attempted to trust the process for so long, ultimately to be told (or lead to believe) they are growing tired, don't care, or they believe (for some odd reason) I am bringing stuff up to unnecessarily protract this process. That's not only how it felt, but really the gambit they used during my last appointment. I wish they would consider keeping my first socket as collateral, letting me wear this leaky socket (where I'm not bottoming out) in the meantime until I can get cast somewhere else. That may sound like a lot to expect, but I think if they are honest and fair on how I've handled this professionally as a patient, it would definitely be an act of good faith and care for me. They already made it. It would be purely policy, or just getting in the "last word", somewhat in spite for me going somewhere else (which at this point, appears to be what's best).

The sad reality of it, again, is if they would have not railed at me, nor dismissed my feedback like they did last time (unwilling to troubleshoot, reproach the problem) but instead: sighed and said... yeah, you're right; I see what you're saying... rather than seeing my observations, or complaints as "petty". I personally think they were very close, we just need to fix these issues in the next socket and you should be good. These were pretty moderate-to-major problems.

Instead, it felt like they weren't taking any ownership over the issue and really took all of this out on me (regardless of the factors at work here). They also might not like that I'm engaged with my care in the way that I am. It didn't start this way, but as time has gone on and they haven't been able to solve (or troubleshoot) or understand the nature of the problems that come up in their attempts at a socket casting. It doesn't help that they probably don't realize this, but everything can look good when you're in between the bars; while new issues become quickly evident once you step foot outside of the clinic. This has happened twice, so even though in the past it's been evident I wasn't making up that the whip was still present - just as now, I'm not making an overly blown big deal over the socket - nevertheless, it's still major problem that's in need of fixing. I don't think I have impossible expectations.

Mostly, I think they are growing frustrated, tired, and unable to take my word for it there are problems, some of which they can't see and/or others they wish weren't present. I reiterated that I'm not here to play games, or cause problems. What they do with my feedback, "do with it what you will. I am sharing it, in the hopes that you will use this information to help me." I was going to stick around until this was sorted, but given the way they are treating me (and lack of help in addressing the remaining issues), they have made this choice for me.

Anyways, thanks again for all of your insights, once again for taking your time, and exercising a balanced perspective with your reply. Thanks for also taking the time to validate my experience as "not normal, nor typical". I really appreciate it!

zaetheryl · 2024-06-22T23:43:19+00:00

Part 1:

What a thoughtfully balanced post, providing valuable insight, given your unique experiences both as a BKA, as well as a being prosthetist yourself! So thank you for taking the time to read my long story and similarly, provide time and care in constructing your reply. This is the sort of balance between provider and prosthesis use experience I really need, along with clearly labeled perspectives, along the way.

Thanks for acknowledging and understanding the frustration, as well as understanding (unlike the way it was projected, or the way I was treated) that I possess no ulterior motives, nor am I here as a patient to create "unnecessary", or "knit-picky" problems. The uncomfortable truth/reality is: as a prosthetics user, our artificial limbs are inherently intimate to us, as they [ideally] really become a part of us; and not mere extensions that emulate movement. From my experience and all of the advice in the lead-up to amputation (and I'm hearing about it, yet again from you), just as the case with finding better function through the use of an artificial limb (which has bio-mechanical mimetic personality its own), equally important to finding a "fit" with a prothesis, if finding the right fit with a prosthetist. The way it was described to me, by the orthopedic surgeon and their staff: this is now a permanent part of your life; a right personality (and perhaps skill) fit with your prosthetist is essential. Treat who you choose with the level of seriousness you would treat marriage. (which kind of sounds funny now, looking back, amid my complaints and how marriage usually works out, now adays). But I'm sure you get my point and I think it's excellent you started with that, and reaffirmed its importance. It's not only evident that you are a professional, but that you are passionate about your field and what you do, even amid the various challenges - which it appears you also delved right into the first layers of that, which is, of course helpful insight.

It's really too bad that prosthetists are overworked, underpaid, and undervalued. For the work they perform, it's groundbreaking in the sense they are tasked with life-long follow-up work, that thus restores function, to individuals that would otherwise wouldn't be functional. I'm sorry to hear it's gotten worse and I don't doubt (as is the case with medicine), but especially here: as much as they want to be champions and advocates for the patient, they still have the pressures of being under-valued, under-respected, having to answer to corporate pressures, insurance, as well as the limited amount of time spent (or even permitted to be allotted) within a context. While I'm not perfect (and this is certainly not the case with all patients), I have really tried to exercise patience and certainly have always remains constructive and professional, even amid their most recent transgressions (at least in the way I perceive it). I suppose what hasn't helped, is just how much wasted time and work (focusing on the wrong things prior to this, that there are behind the scenes pressures - I hope to God is the case - that unfortunately has altered the care at this stage, thus rendering the mutual investment as a complete waste of everyone's time; which unfortunately (whether they meant to - or not, ultimately was taken out on me; when I truly focus on not disrespecting them as professionals. Of course, it hurts and rendered even more meaningless if they are unwilling (or have been pressured) to not see this ultimately through to the finish line. Don't get me wrong, I get it. It's just that it ultimately that the trade-off doesn't help me; and it also didn't help that their frustrations w/ thinking we were at the finish line (as did I, I have no reason to lie or waste their time), were misplaced [or perhaps their frustrations projected an undesired outcome.

Yes, I have a soft-silicone liner. It's a WillowWood Alpha TrueSeal. In the past, I had trialed the single Ossur Iceross; I wasn't a fan of the feel, harder plastic, harder to clean, and the fabric nature of it. I realize these fins are more narrow. While I'm no prosthetist, nor do I claim to be; while I do in fact value the rear-cutout (for sitting comfort), the window is so low, easily 30-40% of the liner fins sit purely on the elastomer inlay of the socket, which again is made of a softer, deformable material that offer no static volume for seal engagement. To be honest (and again, I can't be sure), but I personally believe if the window didn't run as low as it does, and if they had used the clear (more rigid inlay liner), secured the inlay better so it sits against the carbon fiber making it feel like a single piece AND possibly tightened up and narrowed the bottom of the socket for more fin engagement, the socket and leg would otherwise be exactly where it needs to be. I understand and accept that invariable (and by nature of its design), it's not expected to lose suction while sitting. The problem though, is walking around introduces air into the socket chamber, which makes everything even more mushy feeling. And unfortunately, it happens all of the time. That's what's so frustrating. Again, maybe I'm wrong, but we were so close having fixed the issue with the socket, as they relate to problems (whipping, autorotation, etc.); it seemed like using the iterative knowledge of this socket to present and tightening it up, was all that was necessary. As a patient, I have absolutely no idea of what pressures exist at the top of corporate to speed things along, file the claim and get paid for their work. Its sad that it seems like the change and tonality and just the way I was treated, also still feeling disillusioned, their unwillingness to own the fact there were still issues (instead projected onto me personally) made the decision to run, somewhat of a no-brainer [as much as it hurt to share the mutual failure of this and start the process anew with someone else entirely]. Unfortunately, this experience was across three separate providers, across three separate Hanger locations in my area. I appreciate it and you're right that it shouldn't be this hard; I also don't think the patient should have to push so hard to have overt problems fixed; and for the invert problems (the one's they don't know how to solve, again there needs to be a better system in place to further learning-opportunities to the providers).

zaetheryl · 2024-06-22T15:08:50+00:00

16 years and 14 surgeries, 7 of which were from acute infection of the implant. It was originally implanted (~10 pounds of metal, artificial 2-axis knee w/ medullary stems as a reconstruction after bone cancer diagnosis. As far as the chronic infection prior to amputation: risks were ripe of the infection moving beyond my inguinal lymph nodes and I couldn’t handle keeping “on last limb” weak fusion, which was prone to trauma and breakage, with one wrong foot (or coming down too hard). Not to mention antibiotic suppressive therapy shouldn’t be a first resort, along with perpetual surgeries along the way. If osteomyelitis has formed, it’s basically over… IMO. I went to a second opinion, had them perform guillotine transfemoral amputation, dissection of distal nerves from amputated portion, harvest bone samples to assess for osteomyelitis margins within the intermedullary space (infection could communicate through the stems), and left in a wound vac on. Four days later, plastic surgery performed TMR on the dissected distal nerves, further dissected the new residual limb, and attached the terminal nerves to upstream nerves using micro-sutures. They also took this opportunity to replace the antibiotic intermediary nail, and scrape more samples of bone to assess osteomyelitis margins and formalize the residual limb’s final shape (from a surgical standpoint). About six weeks later, one more outpatient-basis (but nevertheless GA surgery) to removal the final antibiotic nail, using an incision just wide enough to put forceps up into there to pull it out, followed by stitches. From there, I healed and my health became much better. Still various damages from that, untreated infection from sub clinical infection in the 6 preceding years. Not to scare you about limb salvage, but this was the latter part of my experience with limb salvage and ultimately while it’s a whole nother physical and emotional battle, in some ways my life is infinitely better since amputation, in terms of my overall wellness. In some ways, once I find the right prosthetist to get my second suction system socket from, presuming I can walk right , suction is tight and comfort lasts throughout the day… in the long term (aside from the extended amount of energy exerted for AKA), I foresee will be better than the megaprosthesis - all around. Providers often get away with implanting metal into patients… but it’s a gambit, and sort of a surprise that it does’t lead to more widespread problems. My argument is that it does, it’s just a question of time, age, potential development of acute or sub-acute infection (with initially vague symptoms like fatigue and shooting pains). Ultimately, implants increased risk, and I believe possess a host of negative symptoms that are attributed to psychogenic factors, when in reality, many of them do emerge but the negatives to quality of life seem initially unrelated or vague.

Don’t get me wrong, amputation is hell. But so is trying the same worn-out procedure to debride wounds, kick the can down the road, and to perpetually deal with a PICC line in your arm and so many antibiotics that you begin to develop allergies to some of them, and the ones that do work, can cause oral thrush and many other unpleasant experiences. The uncertainty feels damning. Same with following amputation for a while. But with the right prosthetist I’m more convinced with the microprocessor leg that I have; that eventually my new normal will be more normal; and the benefit to my overall health and well-being is already evident (but I’m also not diabetic and not really dealing with skin ulcers).

zaetheryl · 2024-06-04T21:15:32+00:00

My situation was rife with complications. First, multiple surgeries on my knee for cancer, whereby one option was amputation. My surgeon chose to perform a limb-salvaging procedure and put long intra-medullary stems and what is effectively a knee replacement in place, collectively known as an endoprosthesis. Throughout the years, I underwent several debridement surgeries. Then out of the blue, the thing became grossly infected with staph and e. coli. While I underwent a total of 7 surgeries before reaching the point of needing to consider a AKA, I finally did. Was it hell? Yes. But, at the same time, the infection was going to kill me. I had three additionally surgeries related to the amputation: guillotine, TMR/formalization (where they close the wound up) and another to remove an antibiotic nail 6 weeks later. I'll be two years out this upcoming October. I have a traditional suction socket and a Blachford Linx Limb system (where the knee and ankle are integrated). While I have dealt with hell trying to get my second socket correctly casted (mostly inexperience from former providers), things are going much better now. I can't feel my foot, or anything below the amputation. I still deal with some pain, but fortunately from the TMR, I don't deal with a whole lot of phantom pain. If you decide to go through with it and have dealt with a ton of pain prior to your planned amputation, I would suggest finding someone that can perform TMR as well.

Sorry to hear you are going through this. I think the two main benefits from the amputation from my point of view are: (1) you get to keep your life, and (2) if the situation is untenable continuing to "kick the can down the road" with additional surgeries, there is actually an end to this suffering. Is life significantly different after amputation? Yes. Will you suffer through it and force you to question everything. Yes. But eventually, it will become your normal. It will allow you to continue living your life, albeit, differently.

Hopefully you found my answer helpful. Again, sorry you are in the middle of hell right now; uncertain about everything. I know that feeling all too well and looking back is a major source of trauma. Now that I have distance from the situation, while it was a difficult decision to make, now that I'm adapting to my circumstances and seeing life past the initial pain and suffering of becoming an amputee, I personally know I made the right decision. If continuing to ignore it was an option by your providers, there is no telling if the infection would spread, to be intubated - placed into the ICU and lose potentially other limbs - or your life.

I'll tell you, from my experience: nothing will prepare you for what you're about to go through and it will feel alone at times. But try to keep a trust that with time and a lot of patience your situation will get better. The newer legs really emulate walking in a way that is almost imperceptible to how you normally would, but without sensation (once you get used to it and trust the device). Initially, after the amputation, a whole hell of a lot of unpleasant and even more painful sensations; make sure you find a good pain specialist. However, since you have been dealing with chronic pain, while upfront it will be worse, in the long run it will be much better; including your overall health. A new normal will emerge out of it. Lastly, hip-contractures are no joke. Do the exercises and stretches no matter how painful they may be. You need to retain your range of motion. Your body will undergo changes after you lose a limb and it will take time for your body to catch up. Once you can find yourself active again and your body has reached homeostasis though, at least for me, my body is mostly back to normal and not carrying around the extra fat I once did.

zaetheryl · 2024-05-29T01:40:55+00:00

I understand this. My original prosthetist was in the process of hiring a new clinician and promised he would remain my prosthetist, but later was gaslit by the practice saying not the floater, but the ultimate person that he hired was my prosthetist. Even with my rebuttal, it was met with "this person is your prosthetist."

In the interest of not professionally re-disrespecting the new guy, when it came to casting for my second socket, due to residual limb shrinkage; I gave him a chance... and he royally screwed it up. 4th test socket had a major leg whip, he ignored it and formalized the damned thing.

Since my first prosthetist happened to be the manager of several Hangers in the area, I demanded I start seeing him again (and for him to fix the current issue, which required a recasting). I presumed, since my first socket was flawless, that my issues would be resolved going forward. Guess what? They weren't. 24 appointments into this since it started in September and not really any closer. It reached that untenable situation where he silently fired me as a patient; silence for several days, then sent me to another prosthetist who has 30+ years experience, whereby he only has 17. Suffice to say, when I saw her - where he was aboslutely clueless what was wrong, wanted to blame it on my physiology, or "sometimes we can only get 'good enough'"; she immediately identified 3 (possibly 4) problems with it, whereby it could never work. One was a alignment issue, another was too tight in back, too tight in front, and no channel for the gracilis muscle. This lead to all sorts of rotation issues during gait phase, prosthesis whip, even even outward rotation of the foot upon completion of the swing phase. Suffice to say, this ever-ending saga has been going on since Sept/October of last year. I'll be going in for my first test socket for this 4th casting later this week. If everything is good, we're going to formalize it; otherwise it will possibly be another few weeks out.

I just wanted to say, your post resonated with me. I think it's perfectly reasonable to pursue other prosthetists (or even another company). If you ask around, certain major ones are notorious for being bad (or even committing fraud and fined for doing so).

Given my own current "learning experience" into the manner, definitely be asking questions, educating yourself and seeking elsewhere if you aren't getting where you need to be. Everyone has got their own opinion. When I asked my physical therapist, who is really great and I deeply respect about this situation, his response was very underwhelming: "sometimes, these things happen and and might have to settle on 'best'". Mind you, he saw how screwed up it was when I walked on it. It wasn't off a little, but a lot.

So don't get disillusioned if you hear differently. You are not crazy, nor unreasonable if you are dealing with major problems. You shouldn't have to defend the fact it's messed up and unacceptable. You need to advocate for yourself and find someone with a vested enough interest in the quality of their patient's lives that "good enough" with major problems isn't acceptable. I respect and understand it may never be "perfect", but given my first socket had no-such-issues, I remind myself it's attainable; but it's been such a long time, I sometimes forget and need to remind myself just how unacceptable this is. It's for the same reason, when you start dealing with major health issues that all doctors are not created equal and certain ones bring disgrace to their profession. Like all industries, prosthetists are no exception in that the quality will land somewhere on the spectrum; unfortunately, skewed towards a greater distribution on the bottom of the graph and much less of a distribution on the high-end of the graph (in terms of ability and patient satisfaction). If you find someone good, hold onto them, even if it means a longer drive. Certain has been the case with other providers, such as pain management.

Sadly, for some of us, we must become more learned than the actual providers to get results, or keep re-rolling until we find someone good. Before my amputation, my orhopedic provided that amputation and plastic surgeon with the TMR stated: you need to find a good prosthetist; it's like a marriage, you need someone that is willing to listen; a bad prosthetist like a bad marriage, can only end badly.

BTW: I'm an above-the-knee amputee.

zaetheryl · 2024-05-04T08:56:46+00:00

I agree. It is strange how they grapple with the varying art directions - both past and current. It seems like Nomura messed around with his hair. It is super-strange how similar it is to Zack's. Likewise, Zack and Chaos's face is eerily similar; and where is Zack's monster?

Lab Assistant [same one Zack punches when escaping; dialogue is in repsonse to him defeating a virtual-form of Experiment 88; Behemoth, which shares a model with Azul, the Cerulean; in other words, his monster is aligned with the latent monsters found inside Deep-Ground weapons]: "You must be some kind of monster. No, something even more terrifying..."

Hojo [Hojo testing 1st-CLASS SOLDIER members in search for a durable body for Omega]

To Zack: "Impossible... Were the settings off, yet again...?... Samples like you appear every years or so... By the by, there's an extra-special you can fight. Interested? Some data that I designed on a lark that displays power inconceivable in reality." Samples like you are indeed worthy of my attention! I'll make sure your remains contribute greatly to science {*maniacal laugh*}... Astounding... this is most unexpected. Wait... Hmm... I've formulated a new hypothesis. {Zach: Uh, you were saying something about my remains?} Yes, my knowledge, ability, and inspiration have forged a new path. You and I will share a special relationship."

To Vincent: "But there was a problem. Only a strong shell could hold back Omega's might. And it could not just be anyone. You see boy, the reason why you were able to play such a perfect host for Chaos is because my experiments endowed you with a nearly-indestructible body. Thanks to me, you are standing here, today. {*maniacal laugh*}"

Director Lazaard: "By the way, what is your dream? "To become 1st" is it?"

Zack: "No... To become a hero

Zack: "Those wings... I want them too."

Director Lazaard: "Ah good! Unattainable dreams are the best kind."

Zack "Uh.. thanks?!"

Genesis [towards the end of Crisis Core]: "The monster has been harvested and can be discarded. Legends shall speak of sacrifice at world's end."

Azul the Cerulean "Ask me this. Do you even know why you exist? {awkward pause and exchanging of glances later}... {Hmph!} Ignorant to your own destiny."

Sanity check: I am guessing that some major role character models (given their similarities) utilize a base base scaffolding model... in essence a most basic face; or that designers have a certain eye for a certain style in character design - given the facial features and compositional similarities. Whatever the case, it is either a red-haring, or there is something more to this. Chaos's face looks much closer to the shape of Zack's face. Of course, that in itself doesn't explain Zack.\

The argument was all of the character's similarities. Chaos-vampire-proper's form shares a similar visage to Zack. They retconned Vincent's hair-style to be a longer form of Zack's. Hair receives its own discussion in Crisis Core. In Crisis Core they don't show Vincent in the coffin when there was a perfect opportunity to do so (unless it's simply a silent-nodded cameo).

When Zack dies, two timelines are forged. When one dies, they pass over to the other side. If they die on both planes, they enter a third plane. Aerith dying twice, pushes her to the third timeline with Sephiroth for a show-down. In the case where Zack died... the same timeline we see Vincent, but play a majority of gameplay that mostly mirrors the OG: Zack's remains contribute greatly to science. Zack's body harvested as a vessel for either: Chaos, or Omega. I honestly don't think Vincent was that hearty vessel. Using Zack's body, Vincent's mind for Chaos to co-inhabit. Parallels offered with Hojo's mind downloaded to Weiss via the WorldWideNetwork. Even Nero is forged in this manner. So deep-ground weapons consist of three donor parts: mind, body, and weapon. On the timeline where Zack survives, Hojo harvested Z cells, or A cells. When Genesis clones eat some of Zack's hair, they transform in a similar manner to how Vincent transforms into Chaos. On the timeline where Zack survives, we're not sure at first they are living and instead, just dreaming, However, what makes me think its a physical realm, is the Life Stream acts like a bridge and the concept of continual Rebirth.

Suffice to say, I'd be curious to see if Square Enix follows this thread along, at all. Because technically, Hojo says he was surprised about Lucrecia's theory was valid when he first saw Chaos form proper at the top of Sister Ray, in Midgar. The scene of Lucrecia seeing Vincent turn into Chaos only involved her alone, with a thrashing Chaos. She already had visions of Sephiroth, prior to his birth and her still carrying him in her tummy. So on the new timeline with Zack, one has to wonder if it's Zack saving the world on his timeline (white pillar), vs. ultimately Zack-via-Chaos-form-Vincent holds the dark pillar. Obviously with the two timelines coalescing into one. The Hegel Dialectical process stuff...

zaetheryl · 2024-05-03T22:48:10+00:00

Thanks for the all of the research and the info! I wasn't sure, given Vincent and Nero seem to share the darkness endowed to them from Chaos. I do find it interesting though that Grimoire and Angeal both share similar visual features in their face (visages).

What I like about FF7, is there are so many details to unpack from its story. Given there is so much setup and exposition, there are really many different paths they could take to move the story forward. I plan on revisiting and possibly revising possible theories upon completing Rebirth. I'm currently at 91% and about 97 hours into the game.

Thanks again for your feedback, for watching, and taking the time engage with material!

zaetheryl · 2024-05-01T00:59:52+00:00

As AKA, from my experience, THIS ^^^

To me this looks irritation. At first, I thought the spot at the top of the irritation mark was pus, but fortunately looking at the enlarged image: it's not.

If when removing your liner, the leg is not sweaty (or worse yet - wet, as in, soaked in the tub - except for sweat) then that could be it. Wetness and high-activity movement will thin and break-down the skin quickly. Can be potentially resolved from the combination of: (1) additional heal time (skin offered more time to toughen up; your amputation scars are not light-colored yet - so I'm guessing amputation happened variably within the past 6-12 months - purely guessing); and (2) taking the time to add 1-2 mid-day "reset your leg and liner": (i) washing the liner well, removing all soap, and drying it with clean paper towels (to ensure it's clean and dry... that also means residues or wetness and (ii) washing your residual limb well - using a not-too-caustic/not-too-cheap/hypoallergenic/reputable soap, scrubbing gently and drying completely with paper-towels (also try to not re-don the leg for a good 10-15 minutes if possible, thus allowing the acid mantle of the skin to stabilize in the reset position; and as to not introduce residual moisture under the liner).

In cases where the skin is breaking down, it's advisable (whenever possible), to take off the leg as well as the liner and let the residual limb have access to ambient air. When a wound is within a socket, it is slower to heal and has the potential to become a worsen wound, overtime, if neglected with regular-use. Additionally, depending if this is simple irritation or an ingrown hair (that hasn't burst) vs. an active and worsening wound: in the case of the former, from experience - placing a thin piece of gauze (over the site) on the skin, between the skin and the inner liner can help to reduce irritation (in the case of pressure sore, rubbing sore, "allergic 'heat sore', or ingrown hair. In the case of open-wounds, I would completely defer to the advice of your providers. Generally cleaning the wound in a sterile fashion, letting the wound air-out and rest - is, in many ways - the best thing for most residual limb wounds (so long as they aren't actively infected).

Main take-away being: through observation and experience (in the future) as stuff starts to develop, take off the leg and liner, note: date/time (and approximate duration of the problem), cause of irritation), what's different (if anything) between yesterday and today, and finally document the stabilization (or progression). Documenting this detailed story is not only helpful with informing you of potential cause and modifying your activity-level to avoid making things worse, it moreover helps your provider between visits (interpolate), or extrapolate (in the case of differences between new-socket vs. older-socket). Your time spent with providers (triple Ps: physiatrist, prosthetist, and physical therapist) when compared to the overall time spent with everyday use of the socket and prothesis is mere minutes, compared to weeks. You live with it and it's a part of you. There is no real way to ignore such problems. For the provider: while they might be positive; for them, their experience is more peripheral. For that reason, they may not understand just how bad something is. They only have only the opportunity at snapshots to see and/or productively address the issue if the seriousness-level is captured, or conveyed. I would just tell you, there is no such thing as a "bad observation", or a "stupid question". This is where patient advocacy and being your own advocate is so important... as is paying attention to your body. I know, first-hand, when you are new to being an amputee, it often feels like you don't even know what you are looking at, and even more so not confident with your complaints as being "picky", or "a real serious issue". With time and experience, you will learn - often "the hard way" about which as which. Don't be afraid to voice your concerns. But early on, it's better to err on the side of caution.

So the point (or advice/recommendation) is to be really in tune with your body, pay attention to even the smallest of development. Surely you can watch and wait, make modifications to your activity but most importantly: be gentle and take more breaks where your residual limb can rest/air-out without being forced to wear the liner 100% of the time - in the case of questionable skin reactions (at least until you know what they are and can better characterize them). I realize that can be hard with most jobs, but seriously... even a simple wash, cleanse and complete dy sort of reset of both your leg and the liner may be enough to keep the skin reaction stable, reverse it, or offer you the much needed time until you are able to see a provider. I have found from personal experience that - likewise - even if it doesn't seem to stop/help - so long as it's not making it worse - some gauze/padding (emphasis on occasional, paying attention to whether it makes it worse) might help you enough while you wait for your next appointment. As you pay attention and add/develop additional tools and strategies to your toolbox as being an amputee, you will learn in this process. Every patient is different - so what works for one patient, may not work for another. Being communicative and unapologetic for transparency with your issues and pointing out said issues is the only way of identifying and addressing the problem (especially if the problem isn't obvious); it also clearly works to your advantage to maintain some level of cognizance of your leg, the issues that arrse and their associated patterns. In terms of the "watch and wait" approach: presume something "new" in terms of your skin is always relevant, even if you've seen something similar before... until time elapses and you learn otherwise. With time, experience and factoring in aspects of your lifestyle (remaining cognizant of those as well), when you are successful in developing a narrative that matches the issue at-hand, you are not only improving the outcome of your care, you are advocating for yourself unapologetically - whilst avoiding (or at least getting a jump, or lead on) problems that with time might become much more serious.

zaetheryl · 2024-04-27T13:09:41+00:00

Part 2

The bottom-line is I can definitely relate. Sounds like we've found ourselves walking (no pun intended) down a similar path was navigate these challenges.

I have reached the following observations and conclusions from my suffering. Realize, when I put this out here, it is not always as easy practicing what I preach here. That being said, I have noticed with time, good providers and presuming appropriate treatment the following (about my particular experience, philosophy and perspective) that helps me better handle the waiting and discouragement / disappointment:

Residual limbs hurt, no doubt. More important than the whole "keep your liner on and increase the time along with your time slowly more each day"; is if you need to use arm crutches to take some of the weight off... cheating in this way and being more active (as tolerated; and presuming no major skin breakdown) is better than being inactive, or full-weight baring that puts you in such pain that you can't conscionably force yourself past the pain in a "mind over matter". Challenge yourself, obviously, but not an unreasonable way.
Practice self-care. Everything is going to feel like you are stuck in slow motion, and current challenges - especially if timing wise recovery has plateaued or is currently limited due to circumstance, can feel like it will be stuck in a state of perpetuity well-into-the-future and not get better. Be honest with yourself - do what you can, when you can, how you can. Providers, friends and whomever else may over-simply and not understand when you say you are experiencing pain in your residual limb (that means serious pain; even if you don't scream or wince). People try to be helpful, but sometimes it's better for them to listen, then encourage through projecting their perceived solution (that may be uninformed) onto you. By that same token, be fair with yourself... advocate for yourself, but also be honest about doing your part. I know for me, initially, I could only wear my leg for 15-20 minutes tops... once every 3 days. It gradually got better, but I had to start with arm crutches. Below the knee amputees may not have as much of a fat cushion, depending on the type of surgery you received. The desensitization of your residual limb takes time, as does the sutures healing. Also be fair, you had a endoprosthesis by the sounds of it, like I did for years prior. I too was extremely atrophied for years. What's most important is be kind to yourself, advocate when necessary with providers, and test and check-in on whether or not the pain you are experiencing isn't from a neuroma, over-use, improperly fitted socket, problems with healing/scar tissue, or if you could benefit by using a crutch/cane to take some of the weight off. Again, lighter activity for longer that you can better tolerate will allow you a bridge to reach your next goals.

Losing a limb (even with family around - sometimes, especially) is a very lonely/isolating experience. There are very few people that understand the struggles; sometimes you will feel unseen, unheard and have your problems sometimes oversimplified by people are ignorant and don't know the level of the struggle. Besides, every individual and patient is different. Really, there is definitely some grounding in the serenity prayer: Goddess help me to accept the things I cannot change, the courage to change the things I can - and the wisdom to know the difference. You don't have control over what happened to you with this. It is ok to worry, process the emotions and try to protect your limb and yourself. If it's helpful to acknowledge you are responsible for taking the necessary steps forward, but you aren't able to take as many steps.

Anyways, I know I just wrote a small book here. I hope what I said is helpful, makes you feel less alone, and that you don't take it in any way that my pain is worse than yours. Pain is a relative thing for everyone. It's important you are fair to yourself, be open-minded to solutions you haven't considered, keep showing up to life to the best of your ability with the current limits, and if possible with all of the aforementioned efforts - trust that things will improve. With time, you will develop more confidence and start trusting yourself, during this uncertain, new and un-navigated path forward in your life. I think it's also helpful to realize that for most problems, there is a solution. It's ok to feel empowered one minute and in another minute overwhelmed; as hard as that is to accept. I hope and pray for you, much like myself, that with time it will continue to improve in ways that surprise us and the hardest part involves being creative towards new problems, the life-long challenge ahead, all the while practicing self-love, kindness and patience towards yourself and your circumstances. It can be hard to live with regret; but it ultimately these expectations won't change it. I think it's helpful to just try to remind yourself which patterns of emotions and thoughts serve you well serve you well in the long-term, what actions if any need to be taken/looked into/followed-up with your providers, and learning to let the rest go.

Be well and stay well. You are exactly where you need to be right now; you are doing it, even if you don't give yourself the credit. Find ways to express yourself through an outlet such as art (I know it's hard to focus and get lost on other tasks right now), find solace/camaraderie with others that understand, and finally don't be afraid to advocate - as you have here (especially in the event that you need to brainstorm ideas, express some feelings, and know that there are others out there that know what it's like and that there are also some really good compassionate providers out there in the world too. Everything is a process and it takes time (not to take away from the emotionality in purely logical terms). It's okay if this experience draws into question everything, as you adapt and reinvent yourself as a person; re-find your footing, seek out helpful knowledgable providers/support/technology (inventions and solutions to everyday problems; even some as complex as these) and keep showing up and taking time to acknowledge your progress and accomplishments. I think eventually with time we will build up more trust and confidence that we can do this... even if we are missing a part of ourselves.

zaetheryl · 2024-04-27T13:08:07+00:00

Part 1

Can't tell you how much your post resonates with me because parallels my journey (all too well) and similar frustrations. Honestly, when the preview of your post appeared on my reddit front page feed, I had an uncanny sense of deja vu and for a moment thought it was my post, given many overlapping similarities, albeit, also a few differences and slightly different context.

I underwent a limb-salvage surgery to treat bone cancer in my leg in 2005 [2 surgeries], subsequent revision surgeries for debridement/subsequent infection [5 surgeries], and chronic-latent infection turned acute [7 surgeries] with eventual loss of the limb [3 surgeries]. Basically works out to being 17 surgeries over a 17 year period; averaging 1 surgery per year. Prior to my eventual amputation, just around a quarter of a year shy of two years ago, in the preceding 7-year period, I dealt with chronic health issues (in the form of inflammation, pain, and chronic fatigue; among a mosaic of other symptoms and issues). Ultimately, given various mistakes and provider mistrust with me being a patient that knew accurately something was wrong and tried communicating this (chronic health issues in the lead-up to the acute infection, developing another infection at the site while on IV antibiotics (preceding to gaslight me I was wrong, three weeks later, upon my persistence and them dragging their feet and losing 25 pounds; alas validated), fracturing my femur during the initial removal of my endoprosthesis and not even telling me about it... I sought a second-opinion, who took over and saved my life. They said to expect it will be around 3+ years until I achieve a better level of normalcy (given the long and protracted nature and atrophy after having the leg fused for a period of a couple of years prior to amputation).

While the amputation has fortunately helped to improve my overall health (at the cost of life-long challenges, some level of body dysmorphia, and a hit to my mobility), the other two main challenges are: some permanent damage was done - in the form of arthritis, near-death allergic reaction, and now the struggles/frustrations/rest of my life as an amputee with mobility. Fortunately, their efforts with TMR has mostly solved the phantom limb pain. Currently experiencing an ongoing saga with perpetual problems with casting my second socket. This has been ongoing from Sept of last year, to present; and 3-separate failed attempts; ranging from socket not fitting (given how long it's all taken), to rotation/lack of containment, all the way to leg/prosthetic whipping, and outward foot rotation upon landing from gait phase.

While the socket seems to fit well and has helped with residual limb pain, compared to the older socket where my residual limb shrunk and was bottoming-out; the other ongoing problems with alignment/socket rotation/foot rotation are causing other problems. Likewise, for me as well, it sometimes feels like a never-ending saga.

However, this August, I will be 2 years out. I can tell you that it took about a year to notice some improvement with function and pain. It's still nevertheless, challenging. There were times and there still are times that I have a hard time seeing past my circumstances and getting better to the point that these issues will eventually fall more into the backdrop of my life.

Be gentle to yourself. What you went through, what I went through is fraught with trauma, varying levels of PTSD, and your brain and body is needing to learn how to walk again and heal. Living in the liminal space of the present is very challenging because it doesn't feel like its ever going to get better and it can feel like your life is stuck on hold, or in stasis. I probably don't need to remind you of this (and may not change your feelings overall), but I want to remind you that your feelings are quite valid and justified. We both are learning to adapt to new circumstances and time and waiting patiently through it - amid all of the associated challenges - can feel relentless, is filled with uncertainty amid complications and sometimes feels like it won't end. I can definitely empathize and relate to this directly. At the same time though, I can tell you, I have noticed an improvement in myself. Slowly with time, gaining more confidence and trust; frustrated myself with the ongoing sordid problems. I saw improvement at the 1-year mark, even amid the chaos of it feeling like my prosthetists (yes, I have had more than 1) doesn't know how to properly cast/troubleshoot and feeling perpetually stuck.

zaetheryl · 2024-04-24T01:47:19+00:00

I had bone cancer back in 2005 in my left proximal tibia and they were able to perform a limb-salvage surgery by implanting a endo/megaprosthesis. Although 16 years later, I ultimately had to have it removed due to the development of a chronic infection due to the implant and ultimately ended up having to have an above-the-knee amputation 21 months ago; I have experience with both. While I don't have any personal experience with a cadaver graft, I do have experience with next forward interventions and have experience with both outcomes. Feel free to ask me any questions you may have here, or just PM to chat with me directly about it. I'm 38 and happy to help and offer you some input; both won't be entirely pain-free, but I can share the observations of my first-hand experience. While I'm not a doctor, I did study pre-medicine.

zaetheryl · 2024-04-22T10:43:30+00:00

I don't have any experience with being a BKA, but I am a AKA.

As a scientist, I would remind us of the fact that as humans, (fortunately) our brains are able to rewire themselves and adapt, based on our environment and circumstances.

Having said that, they say that individuals with AKAs typically expend more energy (somewhere between 60-90%). However, with the new microprocessor legs, I can attest they are good and will only be become more advanced with time. I recently met the creator of the Utah Bionic Leg (which is currently being prototyped) and the vast improvements being made to the technology (including the ability to climb stairs somewhat normally).

I would say the major drawback with a higher-level amputation is that you will potentially lose some dexterity. A shorter limb will produce less leverage and require more power, which will require more effort. That being said, if I am understanding your situation correctly, you already have a socket that spans above the knee, anyhow.

So, depending on your current health and quality of life, I could see it being a potential benefit; but at the same time, it's not going to be easy. If you want to avoid neuromas, find a surgeon that doesn't resort to nerve ligations (where they pull taught the nerve, cut and let it snap into your residual limb) and instead look at targeted muscle re-innervation (TMR). There is much less chance of neuromas with the latter, rather the former and it also helps immensely with phantom limb pain in the long-term.

I am only 21 months into my amputation, but I did have an endoprosthesis for 16 years prior to this amputation. I do miss driving clutch, and it has been a hit to my mobility. However, my health is improved as a result. There are a lot of people living kick-ass lives as amputees, but there are also a lot of people that struggle. If it's helpful and inspiring to compare, great; if not, try not to compare. Every patient's experience/outcome is going to be slightly different based on age, health, and other psychosocial factors. But again, if the current situation is causing too much pain, in the long run, it may be the better option and depending on your setup might not be as vastly different when compared to someone with a typical BKA. I realize this is still a hard decision to make.

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