Incontinence issues From S1 nerve compromise

CptKirk said:
People WONDER WHY I snap when I hear people defend addicts! Because of them and despite the FACT I have never in my life used/abused ANY drugs I am treated worse than dog shit someone wearing brand new shoes steps in! My patience wore paper thin many many moons ago and I honestly don't care IF I take it out on anyone talking down to me OR outright accusing me of being a drug seeker! They DESERVE to have their face caved in!
Having had an experience where a druggie cost me a lot of money (but thankfully, nothing worse), they're not my favorite people. However, if that's how they choose to live their lives, why not just let them buy the stuff at Walmart? Guaranteed purity, labeled dosages, consistent supply from established manufacturing at predictable prices subject to competition, and no more underground cartels.

I know it's not a popular position to take, especially in my circles, but legalize it all, and people who choose that life don't have to lie, steal and kill to get their untimely death. It might have seemed at one time like banning and restricting things could make them go away, but we ought to know better by now. People get the things they desire. Change hearts and minds; that works. Banning things? 50 years of trying says it's a lost cause.
 
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PadPhilosopher said:
Having had an experience where a druggie cost me a lot of money (but thankfully, nothing worse), they're not my favorite people. However, if that's how they choose to live their lives, why not just let them buy the stuff at Walmart? Guaranteed purity, labeled dosages, consistent supply from established manufacturing at predictable prices subject to competition, and no more underground cartels.

I know it's not a popular position to take, especially in my circles, but legalize it all, and people who choose that life don't have to lie, steal and kill to get their untimely death. It might have seemed at one time like banning and restricting things could make them go away, but we ought to know better by now. People get the things they desire. Change hearts and minds; that works. Banning things? 50 years of trying says it's a lost cause.
I do not disagree with this at all! Eliminate the illicit drug trade and all of the violence that comes with it plus this gives people who do drug interdiction direct access to those who need it right now!

They have to do something because ever since a certain idiot started the "war on drugs" this country has devolved on that front with an entire underground economy, unreal amounts of violent crime etc. the war on drugs is an exact repeat of Prohibition in the 20s and we all saw how well that worked out!
 
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I'm surprised your doctor isn't advocating for you because it sounds like you desperately need the surgery. I've had my back operated on twice and in both cases, my surgeon took care of everything including it being covered by my health insurance. I wan't on medicare at the time and had private health insurance so maybe that's the difference. Anyway, I hope you can get this taken care of as soon as possible.
 
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CptKirk said:
WATCH Prednisone!! When only on a temporary dosage, you have nothing to fear but when I was on it full time (2004-14 with heavy dosages for the 1st 6 years of 20mg/day+) I wound up with Osteoporosis in my spine. My teeth crumbled like sand castles. sadly I had little choice as I likely would be dead without Prednisone stopping my immune system from attacking my liver, joints and especially my lower spine an Coccyx, issue i will be living with that cause INDESCRIBABLE pain until the day I die.
What idiot had you taking it like that. I have it given a few times a year when I flare way bad but that is nuts. I had Av necrosis in both hips and still do in my right. The first thing the doctors asked me is do I have any long term use of it. Because it causes bone death bad. Most pain meds long term destroy teeth too. Trust me I had them all out last month and did impressions for dentures today.
 
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Diaperman95 said:
What idiot had you taking it like that. I have it given a few times a year when I flare way bad but that is nuts. I had Av necrosis in both hips and still do in my right. The first thing the doctors asked me is do I have any long term use of it. Because it causes bone death bad. Most pain meds long term destroy teeth too. Trust me I had them all out last month and did impressions for dentures today.
There wasn't a choice...my fevers would skyrocket the instant they tried weaning me off. Wasn't until they got a combination of medications, including Kineret (biological injection) that I was able to wean off. Without Prednisone at high dose for a few years i am likely not here today
 
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CptKirk said:
There wasn't a choice...my fevers would skyrocket the instant they tried weaning me off. Wasn't until they got a combination of medications, including Kineret (biological injection) that I was able to wean off. Without Prednisone at high dose for a few years i am likely not here today
Yay prednisone. You here is a great outcome.
 
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CptKirk said:
There wasn't a choice...my fevers would skyrocket the instant they tried weaning me off. Wasn't until they got a combination of medications, including Kineret (biological injection) that I was able to wean off. Without Prednisone at high dose for a few years i am likely not here today
Wow it is a Amazing drug. Other than not sleeping I feel like a new man on it. My joint pain is reduced by 3/4 and my body is not so stiff. I had a doctor once say he wanted to put me on a low dose daily just for the imflammation and they really help the Interstitial cysts I have too. But I talked it over with the family doc and since they had just found my AV necrosis he was against it,
 
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CptKirk said:
I had a pump implant from May 2005 until they had to replace it in may 2012. Sadly I almost immediately developed a MASSIVE Staph infection and the pump had to come back out weeks after it was put in. That went from a Staph infection to MRSA and then C-Dif...more than 40 days stuck in a hospital (in agony!) peeing out of my butt, unable to care for myself and to this day that is the ONLY hospitalization I have ever had in the heat of the summer. The rest of my hospitalizations were mostly in Nov/Dec/Jan/Feb with some in March * April. I have spent 8 birthdays (March 3) hospitalized and 4 Christmas's, 5 New years!
Sucks that you had pump implant complications!
In my prior comment, I only meant the external IV med pump that piggybacks into your IV tubing. Granted, that's cumbersome, but can make a hospital stay to break up the pain cycles *so* much less unpleasant!
 
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Diaperman95 said:
What idiot had you taking it like that. I have it given a few times a year when I flare way bad but that is nuts. I had Av necrosis in both hips and still do in my right. The first thing the doctors asked me is do I have any long term use of it. Because it causes bone death bad. Most pain meds long term destroy teeth too. Trust me I had them all out last month and did impressions for dentures today.
When the alternative is a dead patient, long-term prednisone at high enough doses to control the course of illness or disease was what doctors have had to prescribe. My mother had Crohn's disease starting in the late 1970s, and there were times she was on 400mg of prednisone, or more, per day. The side effects were significant, but there were no biologics back then to help fight inflammatory bowel disease.
 
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AttilaThePun said:
When the alternative is a dead patient, long-term prednisone at high enough doses to control the course of illness or disease was what doctors have had to prescribe. My mother had Crohn's disease starting in the late 1970s, and there were times she was on 400mg of prednisone, or more, per day. The side effects were significant, but there were no biologics back then to help fight inflammatory bowel disease.
I had days well in excess of 1000mgs in 400mg "bursts" through the IV. Talk about feeling like you can climb vertical walls! If not for the headache I'd have been in heaven!
 
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CptKirk said:
I had days well in excess of 1000mgs in 400mg "bursts" through the IV. Talk about feeling like you can climb vertical walls! If not for the headache I'd have been in heaven!
In the 1980s, when my mom was on 1200mg per day of prednisone, along with the moon face and buffalo hump she developed pitting edema in her legs and feet. Despite that, she asked me to take her to Disneyland because at least she wouldn't have to poop every 10 minutes. So, since we lived in Long Beach, California at the time, we drove to Anaheim and were parked at Disneyland within 90 minutes. She rode all her favorite rides, and despite past refusals to *ever* ride Space Mountain, that trip she rode it 3 times. After we got home, I asked her why she rode Space Mountain. She said, "Well, nothing hurts because of the prednisone, but I think I'm in congestive heart failure. I figured if I'm gonna die anytime soon from it, it may as well be on Space Mountain!" 🙄
 
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Diaperman95 said:
Wow it is a Amazing drug. Other than not sleeping I feel like a new man on it. My joint pain is reduced by 3/4 and my body is not so stiff. I had a doctor once say he wanted to put me on a low dose daily just for the imflammation and they really help the Interstitial cysts I have too. But I talked it over with the family doc and since they had just found my AV necrosis he was against it,
Bone death with long term steroids (ANY kind of steroids, medical ones at least with includes Prednisone) **CAN LEAD TO** bone death, especially in the hips! The alternative in many instances is death though. I'm shocked that I have yet to break my back as I sure as shit do NOT take life easy, especially when on a "stress relief ride" on any of my ATVs! Same with my hot rod and even my Tahoe.....I see 100+mph on mountain roads (no guiderails, just REALLY BIG trees!) and IF I fuck up, odds are I ain't going to feel a thing and honestly, I could live with that decision. Not that I want to die, cause I don't. I'm simply saying that IF I were to die, I'm OK with that. I have had Osteoporosis in my spine for YEARS, and it's progressing so I know that the odds are not in my favor, breaking my back is a distinct possibility. I refuse to live life afraid though...did that enough as a pre-teen to last several lifetimes and I went from being the best target to be bullied to the one guy NO ONE in their right mind wanted to look at the wrong way. NO WAY I ever go back to being that target, even if it is only in my own mind!

Trouble is, with my fucking luck, I wind up a quadriplegic! THAT would absolutely require tasting a .44magnum! I could never live like that.

What can I say, I intend on having as much fun as possible until the day I die! Fun to me is fast cars, high speed turns, right on the edge, flying through 3' wide trails with 100' cliffs on either side and once I almost ran smack dab into a 650-800lb black bear at 45mph! Both of us would have been fucked up but odds are after his fog wore off, he'd had killed me LOL. still, worth it! IF only I could figure out a way to drive my ATVs with the Stones cranking so loud that people 5 miles away could hear it as clear as day. THEN all would be right with the world LOL.

CptKirk
 
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in case anyone is wondering I hate prednisone, and I am only taking a dose pack to buy time until I see the neurologist. I’ve kept my activity to a minimum and so far the pain is survivable. One day at time is all I can atm, although I’m tired of wetting my self 😞 so here’s to hoping that stops in the near future.
 
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cdory said:
in case anyone is wondering I hate prednisone, and I am only taking a dose pack to buy time until I see the neurologist. I’ve kept my activity to a minimum and so far the pain is survivable. One day at time is all I can atm, although I’m tired of wetting my self 😞 so here’s to hoping that stops in the near future.
Hang in their. I hate the taste and lack of sleep they cause but nothing is better at knocking down inflammation. One day at a time is how I have lived the last ten years of my life. There are so many things worse than incontinence. Pain for me is worse. Hopefully they can fix it or reduce it some. But if they cant and it becomes live you can and will adapt. We have great products. You live day to day as much as you need too. if it becomes to much then you live hour by hour. On my absolute worse days ever dry heaving my gut until I am puking blood every couple of minutes. On those days I live min to min. But we don't give give up. Fell free to went to us or pm one of us for a one on one talk. Trust me I was so frustrated yesterday. I only cleaned up my shit filled diaper 4 times. Everyone here heard about it. Lol. But this is what a support group is for. Stay strong.
 
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CptKirk said:
@AnalogRTO Are you in the medical field? If so, what i would give to have you at the Wilkes-Barre VA is limitless (figure of speech...I'm incapable of giving what I wish I COULD give!) as the ER's in my area are all the same. You're already on opiate medications? YOU'RE A DRUG SEEKER!

Years and years ago I shattered a Dr's face (broke his nose but good and I was oh so proud that his blood reached the ceiling and 2 walls!) as I was at the "other" local hospital in my area (Geisinger) on the recommendation of my PCP as I had already spent well in excess of 120 days hospitalized in 2004 at my local hospital of preference (because my PCP used to see patients there, had admitting rights etc.) as well as Hershey Medical ctr in Hershey, University of Penn, Jefferson University and Jefferson Headache Ctr and finally Johns Hopkins (worst one as the DR I had was a gaping asshole who treated me like dirt and I left after 6 hours! i was called the next day with them offering to transport me the 4 hours there and home when admin learned of it but I was so infuriated that was never happening) but anyway.,.......

In Geisinger, I was admitted late on a Sunday and placed in a private room. I had a 104 fever (I had quotidian fevers that would reach as high as 105 every 10-12 hours for over a year) though the indescribable headache was my largest complaint followed closely by horrific low back pain that prevented me from standing or walking. I had been peeing all over myself (unknowingly/uncontrollably) for months by that time and the next morning in walks a Dr who was obviously a foreigner as I couldn't understand half of what he said but he began by berating me for lying in a soaking wet diaper! He was speaking to me in an aggressive tone when I could had SWORE he accused me of being a drug seeker. NOW, I was sincerely convinced I was dying for more than a year when this was newish to me and truly afraid for my life. I began to incline the head of my bed as I was struggling to understand what he was saying and i asked him to repeat what he had said when he put his face within an inch or 2 of mine and magically lost all traces of his THICK accent. He told me that he was sending me home because I was only in "HIS" hospital so I "could suck up all of HIS drugs"! Well, less than a year earlier I was bench pressing over 500lbs, was able to rep over 1600lbs on an inclined leg sled (simulated squat rack that removes your spine from the equation) and i was still quite MASSIVE, build wise. When he put his face right on top of mine, lost his accent and spoke those words I said "fuck it" (to myself), grabbed the collar of his shirt with my left hand and twisted it so I could ensure I had a vice like grip and let loose with a violent overhand right. I was quite upset that I couldn't hang on to his collar as he instantly collapsed to the ground but I was PROUD that his blood reached the ceiling and 2 walls! That asshole was out cold for several minutes, lying in a pool of blood and then got up, screaming as he held his hands to his face and ran out of the room! I laid back in bed, figuring I'd relax as much as possible until the police came to arrest me! They never did!

After an hour or so, I rang for a nurse as my underpads and bed were drenched (hospital diapers are useless) and I was overdue for my pain med as my headache was as bad as it was the previous night which is what sent me to the ER to start with. when she walked in she instantly saw the blood and asked me if I fell out of bed and I told her what happened, expecting to see the police at any moment. Instead she started jumping up and down while shrieking, thanking me as she (and the rest of the nurses) DESPISED that asshole! They saw him sneaking off of the floor not long beforehand with tremendously thick bandages covering his face, saying nothing to no one! She told me she was having a patient advocate come and take my statement and then proceeded to help me out of bed into a chair after changing my diaper, changed my bedding, got me back in bed with the assistance of another nurse and then gave me my overdue pain medication (IV Dilaudid) which immediately lowered the headache from a 9/10 to a 5 or so.. I spent much of the next 2 days speaking to advocates, hospital administration between an MRI, CT scans, endless lab work and medications plus meals. I was told that "hitting people is never OK" but that was the only scolding I received. I heard from one of the nurses that this particular AQSSHOLE Physician was meeting with admin and of course the story he told them was that I was violent and out of bed and hit him for no reason. Too bad for him he told them I attacked him as he came through the door yet the blood on the walls and floor put him on the far side (from the door) of the bed, so they knew he was lying. they fired him! Turned out he was already on thin ice as he had countless complaints lodged against him due to horrible bedside manner, being aggressive with patients etc. The nurses LOVED me and for the next week I was there I had ice cream sundaes, coffee, bagels, pastries etc. as there is a bake shop not far from the hospital!

I can't tell you HOW MANY TIMES I WISH I could hit some of these GAPING assholes, with the ones in the ERs by far the worst! I never imagined I would experience this at the va ER as everyone there goes out of their way to make you feel respected. NOT the assholes in the ER! The last time I went was last April as my Pain Mgmt Dr took one look at me and asked me who best the shit out of me. when my headache is at its' worst, my eyes puff out, my face gets dark red to purple (as does my head) and my eyes go wildly out of alignment (diplopia) and I see 2 of everything but on wildly varying planes. I refused and when asked why I told him I had gone to the er 2x in the previous 5 or 6 days and they outright REFUSED to do ANYTHING outside of give me a Tylenol and an ice pack and then had the police escort me from the grounds! He told me I was going and he was calling down there. being he was adamant, i reluctantly agreed. WOW....i was literally "yelled" at and told to my face that "we don't give a shit who intervenes on your behalf" we don't treat headaches like "that" anymore. I was offered a Tylenol and ice pack and told the guy he had 3 seconds to get out of my face or else. I walked out before the could get a cop. In speaking with the police the 2 earlier times the police officer asked me to NOT include him in any complaints as he wanted NOTHING to do with what they were doing, told me they've been doing that to a LOT of other people and he wanted his name kept out of it as he knew what they were doing was unacceptable!

I was given the phone # to the veteran's white House hotline, which I had never even known to exist and the woman I spoke to was FURIOUS with how I was treated! I spoke to her for almost an hour and she sounded like your typical "strong black woman" and IF I knew her name and where she lived I'd probably go propose to her! SHE WAS AMAZING! Within minutes of hanging up with her I began getting phone call after phone call from everyone who I had dealt with in the ER the previous week (3 different times) and they sounded LIVID! I was asked WHY I called that number. I was asked HOW I got that number. I was asked WHO gave me that number! I imagine the must have all been ripped a new asshole! The head of the ER (who was the one who told me that he didn't care WHO was advocating for me on my behalf) was miserable and asked me what I feel they should do and HOW I managed to remain professional and tell him HOW I had been treated dozens upon dozens of times previously in the prior 20 years continued to tell me that they no longer treated headaches in that manner and I told him that was not my problem! I don't care WHAT they have to do, but treating me worse than shit, giving me a fucking Tylenol and throwing me out with a police escort was beyond unacceptable!

I have been PROMISED that this will never happen again, but I have little to no faith in that promise. I have had at least a dozen days when the pain was off the charts indescribable yet I still refuse to go as I am sincerely afraid of what I might do IF treated like shit again! I have no desire to be labeled "that type" of patient though I can promise that IF this happens again and IF I lose control that THEY will come out of the event looking much worse than I will as I will not hesitate to speak to every single news paper, TV station and anyone else who will listen. I have had politicians send me letters asking me if this issue has been resolved (NO CLUE HOW THEY EVEN KNOW as I never contacted them!) but I know how to "play the game".

I've simply had it with being mistreated. I am way too sick and tired of paying for the sins of others! I never in my life did ANY illegal drug. I have never once felt high from the myriad of super duty opiates I have been on for over 20 years. I have never ran short, ran out early, had pills go missing. You name it! My pills are in a place that I and I alone can access UNLESS I am hospitalized as my Dad has a key to that safe. My soon to be ex used to until she ran around with at least a half dozen guys and financially DESTROYED my life. Being there is a significant amount of cash and my guns in said safe I changed the locks and the keys are only with me and my Father, period.

I have ZERO sympathy for any DR. who speaks down to their patients, treats them like dirt when/IF someone like me decides they have had enough and floors the bastards! I KNOW they deal with actual addicts and drug seekers daily but it can NOT be that hard to separate those who are abusing drugs from those who need these medications. I've offered to give blood & urine samples as they can quickly determine who is who with either and in a short amount of time but to instantly assume that a chronic pain patient is just another drug seeker is beyond UNACCEPTABLE! That would be no different than me instantly selling $5000 worth of work to every vehicle I come across whether it needs it or not! I am more highly trained in my field than 99.5% of my peers and I know Dr's are likely in a similar situation so to be told that "they see drug seekers so often they feel everyone is one" is no different than me insisting that every damn vehicle I look at visually without doing any inspecting needs $50000 worth of work, period, because i se soo many vehicles that need all of that every single day. That's a copout and beyond dishonest.

I'm sorry...my head is pounding and I'm losing the ability to retain my train of thought. I had a better description but the thought escaped before I was able to fully articulate it., I hope my point is understandable though. I especially am intersected in hearing from medical professionals here, even if only through a PM ((I will keep your information between the two of us) as I feel hopeless and honestly believe that I would be better off dead although I must emphatically state that I am not nor have I ever contemplated harming myself, period. I'd much rather harm people that truly deserve it!


CptKirk
I'm not in the medical field, no. I deal with chronic cluster headaches and was fighting six headaches per day for a couple decades. Talk about nasty! Most of the time they would only hit about 5 to 7 on my pain scale but I had regular times where they would easily skyrocket to a 10 and last for four to six hours with the next one building on the last.

I've gone in to the ER in so much pain that my blood pressure was 220/150. You can fake most symptoms of pain but not blood pressure. I've had doctors and nurses both accuse me of drug-seeking. I was fortunate in that I found the doctors who were my regular care were kind and compassionate, I stayed with them for nearly twenty years and to this day still appreciate how they kept me alive through some of the roughest times in my life.

I had one time I went in to the ER with an out of control headache and the doctor who saw me was the department head. He came into the room berating me for not going to my neurologist and making her 'fix' my medications where I would be normal again. My wife was with me and was PISSED! The wife didn't have to bother my neuro however, this doc had put in a call to her and a nurse popped in as he was finishing up his tirade to tell me the neuro was on the phone.

I would have laughed my ass off if I wasn't in so much pain when he came back in. Talk about a whupped dog! Tail between his legs, "we'll get you the help you need, sir" and quiet and complacent. I loved that neuro, and to this day stop by to say hello anytime I'm back in the area to visit. Fortunately, most of the doctors in that ER knew me and respected my neuro enough to not get stupid when I came in. Those people really made life one where I could become human again.

I've been to the doctor who was the second in the world for these headaches, and his advice to me was that he was going to try to keep me from killing myself before the headaches went from chronic to episodic. It would only be maybe fifteen years, and he had about a 50% success rate. Talk about feeling like you're in good hands (NOT)! When I finally got to see the guy who was the world's best, he still said I was one of his most difficult cases and even with that he really was able to turn things around for me.

I've had those episodes of pain. I've been called drug-seeking, or a junkie, or an addict. I've been taken to the ER where I couldn't stand up due to the pain, been given massive doses of opiates that would kill most elephants, and walked out completely normal. I know that until the pain is controlled you don't get high off the medications. While there were times I would have loved to have been sedated enough to not fight it for the next few days, I was more than content to just be out of pain.
 
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I have always under the impression my occasional wetting was just stress... But I took have an injury at l5s1
 
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Prednisone contributed to my wife's death. She was a type I diabetic on kidney dialysis. We did home nocturnal dialysis and I was her dialysis partner. At some point, she went on Prednisone because of extreme pain similar to bursitis but worse and constant. Over the years they had to increase the prednisone. At some point her dialysis port became infected but the prednisone masked it and by the time it was discovered, it was too late as it was a very aggressive bacteria. She lived 7 weeks as the pain increased. It was a living nightmare.
 
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dogboy said:
Prednisone contributed to my wife's death. She was a type I diabetic on kidney dialysis. We did home nocturnal dialysis and I was her dialysis partner. At some point, she went on Prednisone because of extreme pain similar to bursitis but worse and constant. Over the years they had to increase the prednisone. At some point her dialysis port became infected but the prednisone masked it and by the time it was discovered, it was too late as it was a very aggressive bacteria. She lived 7 weeks as the pain increased. It was a living nightmare
l’m so sorry for your loss =(
 
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AttilaThePun said:
When the alternative is a dead patient, long-term prednisone at high enough doses to control the course of illness or disease was what doctors have had to prescribe. My mother had Crohn's disease starting in the late 1970s, and there were times she was on 400mg of prednisone, or more, per day. The side effects were significant, but there were no biologics back then to help fight inflammatory bowel disease.
Yeah I can understand sometimes you just have to be on bad stuff. Chemo for one thing. Another is one that I thinked messed me up really bad over the years is fluoroquin antibiotics. Cipro and levaquin for examples. They are way way over prescribed and do all kinds of damage to the body. I use to have doctors use them on me for bladder infections over and over. There is a need for the drug but they are used as a first line defense and they should be a last line defense. Like for meningitis. Unlike all other antibiotics they are the only one that can cross the blood brain barrier. It uses one of the same ingredients that is in chemo therapy.
 
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cdory said:
in case anyone is wondering I hate prednisone, and I am only taking a dose pack to buy time until I see the neurologist. I’ve kept my activity to a minimum and so far the pain is survivable. One day at time is all I can atm, although I’m tired of wetting my self 😞 so here’s to hoping that stops in the near future.
For now, it's probably worth wearing diapers to cut down on laundry and the humiliation of obvious pants-wetting events. You can still move the diaper down to pee in the toilet, but wearing a diaper "just in case" is certainly not uncommon.
 
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