Fighting To Keep Myself Alive Is Exhausting...

[@brotherjoseph2060]

Bro it’s been a year since you made a video. Please let us know that you are still with us 🙏🏾

[@LeftBehindLife]

@ember4288yeah just noticed the Instagram account is gone too. I hope he’s okay!

[@barbaramoreira2246]

true

[@alanmo602]

Any update

[@twinstarssystem2857]

whenever people are like "we all have the same 24 hours!" it's like no. no, we damn well don't.

[@vividdawn913]

I haaaate that! I have heart and lung failure. I sleep/nap a good 14 hours a day, and still exhausted. It takes me forever to do simple chores, because I have to stop every 10 minutes (at most) and rest for 5 minutes (at least).

[@sonyaallen-dwyer]

I agree we're all human except for everybody's different

[@ChanceT.Abrams]

I guess in math we doooo… but in how long stuff takes me & how exhausted I get sometimes I wish we had a “time stopper” to average that out. I just spent over an hour in the bathroom, went into a ridiculous spasm, banged my leg on the chair, cursed like some raving manic.. BUT I’m all fine now, except I forgot deodorant and to brush my teeth. I know… I’m going.

[@ayakotami3318]

One quote that irks me. 😤

[@leob4403]

​@@vividdawn913it's even worse when you can't sleep, I've seen that, people dying that can barely sleep at all

[@tylerwano3112]

I fucking appreciate this video so much. The frustration is beyond real.

[@DerelictusAnima]

People need to do MORE of these videos. All the disabled "influencers", don't show how "happy pappy" everything is, show the true reality of our suffering, just like here! Finally! A topic that truly matters! Oh and also we have to be hostile to the world! They're beyond apathetic and hostile to us! FUCK THE WORLD!

[@bryanlittle7940]

Same. I have been hung up on, I have called repeatedly, I have gotten treatment only because I started crying in the doctor’s office, yelled and ranted and begged. Somehow, it does help to see that someone relates.

[@jamesfrommanitoba.1992]

@@bryanlittle7940is there not a group chat where we could all talk. I know I sure could use some advice and maybe a laugh.

[@Kaye09MNchick]

This type of treatment is exactly why I’m becoming a Social worker to go into the medical field for patients. Specifically, chronic pain and chronic illness patients. They need more support and they deserve it because this takes so much of our energy and it’s been too long that this community has been overlooked. Thank you for making this video. From one chronic pain/illness person to another. 💛

[@maryhawker5003]

I have SCI and chronic pain. And I’ve been treated like an addict because of the CDC’s 2016 prescribing guidelines. We warned the CDC chronic pain patients would be negatively affected but they didn’t care. But now, 6 years later, the CDC will come out April 11 saying they were liars and stupid basically, and that they caused harm to chronic pain patients, and the opioid epidemic is a myth because it’s illicit drugs causing overdoses, not prescriptions. Addiction doesn’t even start out with a prescription like they would have everyone believe. But the damage has been done. It’s not fair and it makes me so angry.

[@CutieRingoJoy]

Many years I thought social worker meant socialise lol like communicating with people I don’t know it meant helping people in need

[@luluzyz]

I love my social workers, they helped me get things done. Appreciated

[@annec4019]

just have to say: i literally went back to school 15 years ago in order to have the power to be a social worker, thinking "social worker" title like LICSW would make other organizations listen better to me when trying to help others. sort of it did, but in no way was it very powerful. now, 15 yrs later i am on the other end, needing help from social workers, and still, omg, still what i learned 15 yrs ago is outdated, and it does not matter that i once knew how to help a little.... my final thought: the system is broken even though the kindest people are helping out. am shocked now to find that what i was able to acquire for disabled clients 15 yrs ago when i did now have sci is no longer even helpful info, omg so, dear rachael, would love to know if you achieved your social worker goal, and i wish you all the luck in the world!!

[@cynthg9547]

Your awesome 😊 thank you

[@cheeseyana]

Richard, idk if you still read these comments or if I’m just putting this out into the void. But your videos have been helping me so much. I have POTS and have been using a wheelchair the past couple of months. I’ve been watching all your stuff to learn how to do life differently. I had enough energy to go out yesterday and was able to pop a wheelie to get into a public restroom and I was so fucking proud of myself. I learned that from you. I hope you’re in a place where you can put your mental health first. You’re missed and loved. Thank you for everything. I hope you know how much of a difference you make in the world. Sending you love and light with every obstacle I tackle in my wheelchair. ❤

[@JacoJacobsZA]

This is so true! Disabled people are not angry, they are just utterly frustrated with 1) pain, 2) inconvenience, 3) extra bills, 4) struggle to make an income, 5) problems with doctors, 6) wrong medication, 7) discrimination , 8) fear of the unknown, 9) pressure to perform as a person normal abled person, and the list goes on... 😖 The most painful is when loved ones get irritated cause they don't fully understand what it is ACTUALLY like constantly living with a problem that we don't want in our life 😢

[@bonnieharris4538]

Indeed

[@SergioJr04]

I have been in a wheelchair for 20 years and that is how I feel. It is difficult to try to put on a good face in front of your family and friends; when inside and out you are broken. 🙏🏾

[@vicsanchez9758]

I’ve been trough all that shit and it is really exhausting, sometimes i just want to give up. Thanks for letting the people know what a disabled person has to deal with.

[@CanadianMum444]

💜✋👩🏻‍🦽

[@fontainemoa9637]

💜💜💜💜💜💜💜💜

[@speedracer47]

I know this is a couple years old, but damn do I hear you. It can be so damn frustrating and most just don't have a fucking clue what we as paralyzed people go through. Here's to you, 38 years spinal cord injury T7.

[@Queencrazy1997]

I'm not paralyzed but I'm disabled since I was born. I definitely relate to this video. At one point my mom almost went to the newspaper because my insurance refused a new wheelchair when mine was broken down and i didn't fit in it anymore, i was literally sitting on the wheels. Their logic was that I could crawl to the kitchen and bathroom and back to my room so i didn't need it.

[@JustMe-ug3mk]

Sorry to hear that...🫂

[@strawb3r_]

yep. I was looking into getting a wheelchair and then I saw that you don't qualify for insurance coverage if you can ambulate around your house. like?? I would like to go outside sir 💀

[@GlitchSystem-xf7jb]

I believe insurance is a scam for many reasons

[@Kerverracer34]

I can’t speak for others, but this video hits so hard on every level. It’s pure truth, only the ones who know… know. I never have had the guts to be open and explain the things you’ve discussed through this video to even my bestest friends. I’m so self conscious and want it all to be private, nor do I feel like it’ll change anything. The part about suicide you brought up, and just the overall frustrations you mentioned it’s like I’m your twin. I sit here day in and day out and try to understand what options make the most sense. Bless you Richard

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@ronswolfpack]

So glad to see these types of videos. My husband is a t7 para and deals with these things all the time. He is a veteran so all of his supplies are sent from there but he is dealing with all the other issues at this time he has a terrible wound that we are leaking with. Thanks for sharing.

[@ethanhill4292]

Dude I can’t thank you enough for this video! I’m only 5 months into being a paraplegic and am going through this same exact shit already! Takes some big balls to post this video and I want you to know I appreciate it brother!!

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@winklepicking3202]

This is brutal honesty, I’ve been brutally honest with people about this stuff in the past but I think they think I’m joking, I commend you for not crying Richard, because my frustration turns into tears so very often. People in the medical (specifically if you get admitted to a general hospital) and supply field act like I chose this life, and I want to be catheterised and scooping out my own shite. 😡🙄

[@ninakaiser2930]

Oh I feel you! Recently my family doctor turned me down to prescribe medication - I would have to got to specialists to get the medication. As I am still waiting for my power chair (for months) I need assistance going outside the Appartement. In the email the doctor was really like straight with me. I immediately felt like I should apologize. But what for? For being sick and disabled?? Really unfair! And to me it’s also often that the tears of frustration and sadness are coming. Keep going strong!

[@maryhawker5003]

“My frustration turns into tears so often.” So so true. I was treated so badly by an endodontist I left in tears and the staff didn’t care. Once they found out I was on Medicaid they practically shoved me out the door. And they said they accepted it. Now it’s impossible to find an endodontist that accepts Medicaid, so I’ll probably have to shell out $1500 for a root canal.

[@gassman55]

Bro. Had a 90 min bowel moment this morning. It does test your limits. Glad they are n infrequent. Stay strong!! T7/8 complete para 22 yrs.

[@mistrotech8894]

Pretty much every year that most people had was represented by the word "fuck."

[@ROMPE_NALGAS_24-7]

@@gassman55 I USE A SHIT BAG AND LOVE IT I HAVE NOT SHITTED ON MYSELFE EVER SINCE MY COLOSTOMY PROCEDURE WISH I WOULD HABEEN TOLD SOONER OF THIS LIFE CHANGING PROCEDURE

[@alegnalavieenrose8120]

When you rant, it’s my exact frustration. Everything has to be planned, everything is a struggle, everything is ridiculously hard, people who you need to concerning medication, disability aids, wheelchair struggles.

[@anntunaley9974]

I hope you know how much your transparency helps those of us who suffer many of the things that you do, but always thought we were alone. Thank you so much. You’re our hero. I know you don’t feel like one, but you are a godsend to so many of us.

[@cfalkner1012]

So I’m watching this as I’m on the toilet doing all the same stuff. And just two days ago I too wasted an hour of my life cleaning myself up after what I call a para-poop. You’re right. It is so hard to deal with and embarrassing when it’s private. But I can’t imagine the strength required to make a video about it all and put it out there for the world to see. I want you to know that you posting this made me feel a little better about my shitty day, so I want you to know about mine in hopes that it lifts your spirits as well. Misery loves company right? Even if we’re a few thousand miles apart.

[@kdcbattlecreek]

Who can I share this with to make a difference? I don't deal with this, but the employers need to know how bad their companies are. Why are they lying to customers? Maybe the insurance company can organize them.

[@wallflower225]

@@kdcbattlecreek the medical supply company needs the prescription from the doctor. But the prescription needs to have specific information, anything missing and doc has to send it again. The doctor's office usually will say they sent it but don't understand that they didn't include a certain detail. So we call them again and again until they get it right. Quite frustrating for everyone.

[@stephenbishop355]

I love that you said embarrassing when it’s private, we’re not even talking about when we have an accident in public. Feel your pain but pain is progress

[@chandler_h]

Love you, man! Pissed my bed last night lol life ain't fair and even less fair when you're disabled. Your videos are a beacon to me. You're an angel, Richard!!! Thanks for everything you do!!!

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@kimeokitty]

This is the truly the best most honest video you have ever done! Thank you on behalf of all those that are paralyzed. Btw, you rule with your raw honesty!! You will be the change.

[@ChildofObatala]

I have Charcot Marie Tooth disease(CMT) and because of it my muscles have weakened and lately the muscles that control all that stuff is getting worse. I wake up sometimes with crap in my underwear because I had no idea I had to go or what I thought was gas was not. I'm sorry any of us going through any of this. I do want to thank you for having these pages and sharing both the fun, the necessary and not so fun times of being disabled and a wheelchair user.

[@wheelsofaccess3291]

This is so true. I have so much anxiety any time I smell poop or pee and constantly check myself if something came out. Abled-bodied people often say "oh that pace or this place is accessible and wheelchair friendly" while I know very well that is totally not. I think when everyone turns 21 it should be mandatory for everyone to be a wheelchair user for a few days so they at least know how it is. p.s. would love to see a daily vlog

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@StardustNovaChannel]

It's been 2 years. Please tell me you're alive.

[@weavenut]

Totally agree with you, they need to start using the social model, not the medical model for all things, it would make somethings more accessible, and perhaps in my dreams that we have an even playing field, I don’t think I will live to see it. The costs of being disabled are not appreciated by those who don’t have to go through it. All need to experience this, at see what are the frustrations are

[@kgspvgsp7569]

Only in the US and Canada, other countries dont even have this barrier

[@failvids4all]

Dude, I'm really enjoying the raw honesty in this video, and the frank depiction of your emotional state. I much prefer this to seeing you act happy and cheery all the time. People want reality, not unnatural cheeryness!

[@alexthevampire8420]

This video is exactly what I needed to hear! It's nice to know that I'm not alone. I'm paralyzed in my legs as well and have had a HOSPITAL wheelchair ever since the accident and I've told rehab MANY TIMES that I'm a very active person and need a proper wheelchair and for TWO YEARS I've had to FIGHT for a PROPER wheelchair. People really don't care when it comes to people with disabilities.

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@leob4403]

Of course, it's all about hbtq rights these days, handicapped rights is not as "sexy"

[@christophpenny1457]

Hi there, I’m from England and I am incredibly worried about you, especially with the last few things you mentioned in the end of this video, I bloody hope that you haven’t done anything drastic, I really care about you dude, and I’m worried sick about you 😢

[@Greasemunky04]

Thank you so much for this video. All my life I wish I could convey what I go through on a regular basis but you had the balls to put it out there for the world to see. Disability is NOT inspirational. It is NOT for the abled to feel better about themselves. Thank you.

[@derekthompson2045]

I'm a newish paraplegic, one year in February, and yeah I still get angry about my injury but most of all and pretty much everyday I am frustrated. This video really hits home and with all that emotion, just waking up knowing the day is gonna be one of those extra hard and disheartening days. I can't really describe it to anyone and have them relate because I know nobody else in a chair. It's tough out here for us disabled people.

[@trin.e.t.]

Thank you, Richard. Content like yours is saving lives every day whether you know it or not. Keep being raw and real, the world needs to face the injustice it thrusts upon us. Maybe it’s past time we get angry!

[@MicheMoffatt]

I hope they sort this out for you soon. I think it’s great you are so open and sharing. It’s so frustrating and hard enough being disabled without dealing with beaureacracy of companies. I’m so sorry. Sending you huge hugs, Richard. It’s just so upsetting. I had a colostomy done after I got out of spinal and I’m so grateful to have that. I think people in general don’t understand the extent of impact spinal cord injury has x

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@laurielovesthepups]

thanks for sharing your struggles. it helped me understand my husband's frustrations better.

[@JakeTGB]

The most accurate video I’ve ever watched. Every word was the most truthful statement ever said on earth.

[@FeralWench]

As others have commented, I can't begin to tell you how much I appreciate you making this video. As a diasabled person, I sometimes feel very much alone, and seeing someone go through similiar struggles as I do, helps so much. Thank you for making such a raw honest video about things that happen almost on a daily basis to those who are disabled.

[@bramvaneden7318]

I know the feeling Richard. Sometimes it all sucks. I hope that things will get better. Stay strong 💪

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@jamesformosa6597]

Keep your head up mate. Everything happens for a reason. I am a T2 and feel your pain. You need to start posting again!

[@lucilleavakian833]

Anger reversing into depression. Clear description, very powerful, thank you. Your generosity in sharing this side of the disability experience is groundbreaking and super important for all people to hear. The blatent lieing betrayal of Drs and their staff in mindblowing and kills my trust in any of them, yet I need them. But that line, Anger reversing into depression, I'm going to keep that close and share it with my teenage daughter as we endlessly work tp understand and accomodate her group of conditions. Sending love from Delaware.

[@fishmanmtb]

So much of this rings true for me. The daily struggles just to start the day, compounded with being ill. I've currently got a UTI and it's doing my head in leaking and needed the loo all the time. In the UK it's a bit different, but a few years back my catheters were discontinued and I wasn't told. Came to collect my catheters only to be told at that point. I had like 4 days supply left and had to reuse and sterilize catheters till they could source new ones. I dunno how I didn't get a UTI then.

[@brentoldfield2452]

So honest, so correct and so informative... I'm new to the labeled family (54 and diagnosed MSA, just got given my 1st horrible cheap wheelchair, near heart attack when starting to price lightweight unit) and learning every day - thank you for channel.

[@traciebecker6669]

Do you get the feeling that some powers to be do not care if disabled or chronically ill people just die? That scares me & I have to be honest and admit that the medical community and/ or insurance providers are not reassuring, and I don't think the government is helping matters. What can we do? You're a warrior and don't forget it ❤️

[@cbryce9243]

I agree, it scares me too, especially in the medical community. The people in the world seem to be much more kind and helpful. I am not paralyzed but I do use a manual wheelchair for other illnesses. Just getting a doctor who would give me a diagnosis was like pulling teeth. They treat people like they are faking their illness.

[@adishneider8918]

Honestly sometimes being chronically ill/disabled is really fucking frustrating. I was literally just talking to my friend about how fucking expensive it is to be disabled. I have a chronic illness that has now made me disabled and even the smallest things that seem to take seconds take out so much of my energy and time. But thank you so much for making this video. Being honest and truly talking about this really helps me and I'm sure also others. And hopefully it might help you too. It is out of our control being in our bodies but for me talking about it sometimes makes it less overwhelming

[@Sarah-qj9ij]

Your such a amazing person and when your upset your even more of a total awesome man that you are. You made me truly happy watching your videos your personality truly makes you a genuine person. I know this sounds crazy but when your fustrated your additde is even better

[@copperhead100]

With everything I've learned in the last few years about the American health system, this doesn't surprise me. Even though I'm not in your situation, I can blindly guarantee you that it's nowhere near this difficult here in Germany (or anywhere else in the European Union). In Germany, you would get a prescription from your general practitioner. You take that prescription to the next pharmacy of your choosing. And they hand you whatever the prescription says with no or almost no extra fee (I'd say max. 20€). If it's in stock, you can take it with you, otherwise they will deliver it to your home free of extra charge. The US always highlights what a free country it is. I'm not saying Germany is less free (most of the time you could consider Germany more free than the US), but what does it say about a "free" country if it's unable to keep its citizens healthy?

[@Feliciab67]

I'm an American, but the healthcare system here makes me so angry sometimes. Some of us are lucky to have good insurance, but so many don't. I have a friend who is a nurse and she has the shittiest healthcare. Crazy, huh,?!

[@PennyLester]

In the US, we used to get a prescription from the doctor and take to the medical supply or pharmacy and it was handled as you said. Now they do everything electronically. Insurance companies in this country almost always deny claims on the first submission. They have deadlines for claims and their goal is to not pay only to take our premiums. In this video the medical supply company said that they needed a diagnosis on the form that was sent over to get the insurance to pay. I don't know about healthcare in other countries but in the US they use a ICD book. (it used to be called an ICD-9) Each illness is assigned a code. Because his disability is permanent, it is assigned a particular code. The insurance company wants the code every time a claim comes across their desk. Without the code typed in, they use this as an excuse to deny payment. (I worked in medical billing) the majority of people do not know this information.

[@dorkasaurus.gretch]

@@PennyLester Thank you for sharing! I'm American and "newly" disabled, and I have a feeling I'm gonna need to know this later on.

[@marshatomkins7989]

No one talks about this side of paralysis. I hate that this side of the issue exists and you deserve commendation for being willing to share. I don’t know what else to say without accidentally saying something useless, or worse, thoughtless, so I’ll just say thank you.

[@oddly_icarus]

I'm a new mobility aid user and I just want to say your channel has really made me feel more comfortable with myself when I need a wheelchair. Thank you. I am so sorry about your frustrations, I have totally been there. You are strong and can get through this.

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@Wheelchairup]

I have literally ran out of catheters so many times because of this exact thing happening. It is ridiculous, I’ve been dealing with this since I was 18, I am now 50….so 31 years of BS!!!!!! I feel your pain brother! And we have the same guy for our catheters lol….he is awesome!

[@arlenedemaree2425]

I am a new amputee even with physical therapy I still have struggles.thanks for your honesty

[@squidvicious1152]

I felt every bit of this. The frustration is all too real. I’m still getting used to this. It’s true, being in a wheelchair can and will cause allot of suicidal thoughts, it friggin tough. I’m fighting that depression and doing the best I can though. Very thankful for the people I have in my life, and thank you for the content you create, it’s really a big help.

[@FreddotheWheelchairGuy]

Great video Richard. Loving the raw honesty. So grateful for my healthcare here, my catheters get automatically sent to me every month and I take that for granted too often.

[@heathersmenagerie8077]

I so appreciate your honesty and keeping it real. We deal with such insanity! I had a doctor tell me I don't need a wheelchair yesterday, but I can get a cane. WHAT!? That doesn't help pain and balance dude. Then lie to my face that he got a my pre surgery stuff approved for an out of network provider that he likes. 😡 Please stay safe, it hurts to think you'd ever hurt yourself. Take care Richard.

[@johnbethea4505]

Being paralyzed is sometimes a bit hard that many of us have to live with. We must and have to be stronger than normal healthy people. Good luck to all..

[@kgspvgsp7569]

A bit

[@johnbethea4505]

@@kgspvgsp7569 how about a tad

[@paralifetv-youreverydaywhe8314]

Absolutely! Keep strong!

[@johnbethea4505]

@@paralifetv-youreverydaywhe8314 I have been dealing with it since the Vietnam War 1966-67. Thanks and be strong...

[@paralifetv-youreverydaywhe8314]

@@johnbethea4505 Mad respect for you. I'm from Canada but played a lot of wheelchair basketball down in the states from 2000-2009. I've play with and against, became friends with many and some who served in the Vietnam War.

[@lucys7457]

Add carers into all of them problems and it’s just chefs kiss

[@kitlarson8655]

this video is so important to me. I feel seen on such a deep and fundamental level, thank you for making this.

[@-beee-]

Grateful for you sharing the unglamorous realities. Your frustration is SO legit.

[@ivygreen9787]

Hon, I think you need a hug. Did u feel that, that was a hug from me to you. Stay positive. It's just a bad day, not a bad life.

[@andriipurskyi23]

Bro, you fight through life, you are inspiring

[@jesslukyluk]

Thanks for this real video highlighting the things you have to deal with everyday that everyone takes for granted.

[@oldkingcole4300]

This is the most relatable video I’ve ever seen. I’ve also been battling my urologist for months. Had a uti turn in to a kidney infection because they kept ignoring me and giving me excuses as to why they couldn’t get me in for an appointment. It’s become a regular thing that I end up in doctor’s offices for HOURS just sitting around waiting to be seen, even when I have an appointment. No one gives a shit and it baffles me how people like that end up in the healthcare positions that they do. This is life, brother, hang in there, you’re not alone.

[@Ristel911]

Wow…thank you Richard for sharing your struggle. This is my deepest darkest struggle since my spinal cord injury. The frustration leading to anger to depression of managing a neurogenic bladder and bowel is so apparent in your video. It the visceral and real thing that doctors, suppliers and insurance companies should watch when in training to understand that we are just trying to survive.

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@jstepp1973]

So sorry you are having such a bad day but watching that really raised my spirits. Lifts a big weight off my shoulders knowing someone else can relate without thinking I’m having a pity party! Hope things get better!

[@emmy_corgi8809]

Richard, please don’t end your life, you are so strong and can get through the worst times

[@garrysnyder2415]

Richard: I am 72 and have been a para since I was 16. I have gone through all of this. Waking up to a messy bed is always an awful way to start the day. Getting ready to go somewhere or transferring into the car and peeing in your pants is never fun. Everyone is affected by this. I am currently on hold with my medical provider. They are holding up my shipment because I have an open invoice, that I called about last month as it is wrong and was told it would be removed. Now I have a overdue notice. This is just not easy. Keep on going...

[@denesejamerson2356]

I know things will get squared a-way for you Richard. You have once again put things in perspective for me; I can't get frustrated with minor inconveniences because others go through way worse. So now we know why you shaved your head, to keep from pulling it OUT! Love you man! Spacious place you have!

[@sunshinetaradise]

This video!!!!! I felt every single thing deep down! I experience each and every single thing and I felt your emotions to my core!! Thank you for being so brutally honest and showing a side people rarely understand with SCI

[@amymartin6123]

This was an amazingly powerful video you shared. Thank you for being so so honest and open with the realities of your every day frustrations. I have gained so much more conscious respect for wheelchair bound people through watching you. You're an amazing human. ❤

[@841106noel]

I'am also on wheelchair so I understand You in some part. But I have better situation because I "only" loose my legs in car crash. Stay safe and don't give up.

[@sandrajacobs5786]

Im a new wheelchair user, being gradually paralyzed by radiation treatment for colon cancer. I feel your frustration and anger. This video is very helpful to me. Thank you!

[@jobyjustafanofthings]

I cried from beginning to the end of this video but not out of pity but out of seeing someone literally describe the true and real feeling of what it’s like to have a disability. This hit home hard with me,though my disability be different we are cut from the same cloth. Those days you just know what it’s going to be like are so hard for some to understand”how can you know it’s gunna be a bad day, your just so negative” but I know my body and my mind I know what’s happening, I have lived this day a lot,thank you so much for posting this. Also the medical hostage situation is what I call it, when you have to walk on eggshells in order to save your own freakin life, can’t have the medical staff feeling upset or the medical supply company feel unhappy either but your life is at stake and any passionate plea for your own self is taken as a “difficult patient” and even seeing that written in your documents makes it harder with other doctors thinking your a complaining trouble maker. Their incompetence is a literal threat to my existence! And the cripple tax is so true it takes so much more time to do the simple things and then someone has the audacity to call me slow or lazy. But I just want you to know when I saw this video I saw a man with I deeply admired you, and appreciate that despite the creeping demons of ending suffering you kept going, you made those phone calls anyway, you documented reality, you expressed yourself to the best of your ability though we could to the inferno burning inside. Though I’d never wish this amount of endless cyclical stress I am relieved to know that what I feel is a common real perspective and honestly it lessens the sting in a way I can’t illustrate. Thank you and please keep going the world needs people like you. I know I do. Thank you so much again, I wish you as good of a day as you can have today!

[@7wheelz]

I've had good luck using a freshwater enema 3-4 times a week. Prior to that, it was dig-stim several times a week with limited success. Got an inflatable enema nozzle since I have no sensation or muscle control down there. After filling the bag, inserting the nozzle, I just inflate the nozzle, keep it from sliding out with my hand and wait for 1.5 liters of water to go in (about 3-5 minutes). Once the water is done going in, I let the air out of the nozzle and it pops out. About 30-45 minutes later I'm done emptying out and I'm good to go for a couple of days. Thanks for your videos, Richard. I wish you the best. Sam

[@MsMorganThorne]

Sending you lots of love & the hope for better days! Thanks for being so raw and real. You've helped me through some pretty dark times over the course of my injury. It helps to know we aren't alone.

[@jamiefleming2112]

Feel your pain and frustration mate, every day is a challenge for us. Stay strong

[@WheelchairWonders]

I'm with you Bro. Hold on in there. Things will get better. I'm willing it to happen for you.. Take care.. (Phil - UK)

[@3devious]

I hear you! I've had so many days like that. I'm thankful for my dog. She gives me this look that says "I know you have a lot going on but I need to go out." I'm glad that I can help someone have some dignity ♥️

[@mrsgbracing6012]

You nailed it with “dealing with a world that WAS NOT designed for them!”

[@MasterJediJason]

Thanks for showing what we really go through. No one shows this part of being a cripple. There is a reason we have such a high suicide rate.

[@RobertOw83]

My heart breaks for you, what a crap service your doctors are supplying. I understand why you're frustrated. Stressed. And what that stress can do to you physically & mentally. I can't relate to your specific injury/disability, but I am disabled with MS, and I am approaching these bladder/bowl matters - so I can relate to your frustrations there. It sucks that you have to go through this, and I hope it gets better, I really do.

[@kelly1827]

I also have MS, and started watching Richard when I was looking for tips for navigating in a wheelchair (I'm an ambulatory user). I often say to people that having MS can be like having a SCI, because if you're like me and the majority of your lesions are on your cord and not in your brain the effects are very similar. And I watched this particular video right after a telehealth session with my therapist during which we worked through my feelings about being a burden to my family as the disease progresses... 😔

[@laraserendipity1424]

Don't feel bad richard. I just finished cleaning up the bathroom as I didn't make it in time either so please don't be embarrassed!

[@dailenmartin]

I appreciate your honesty. I completely know the frustration and depression that goes with all of the being paralyzed. You have been an inspiration to me since I became paralyzed on 9/11/2020.

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@andreaturnagesavoie5634]

So much stress. You do have to be careful that frustration does not turn to depression. My heart goes out to you. I’ve bee paralyzed since January 2006. My husband of 28 plus years passed away on December 1, 2020. I’ve been living with my parents since January 31, 2021. I have to tell you that my mom is amazing and helps me out so much. I truly don’t know how you do it being and living on your own without any extra help. My heart goes out to you. I am thinking about you and praying for you.

[@Katie_Lady]

Thanks for being so open and honest about hard things. It is amazing how much crap there is to learn about life in a wheelchair. I’m learning from you. You’re helping me. Hang in there.

[@aprildcarter4489]

I just wanted to tell you Richard that this video is one of the best HONEST videos of life with spinal cord injury that I have ever watched. My husband is a T5 para and goes through EXACTLY the same things you talked about in your video and I wish that the world could understand how frustrating it is to be disabled. If doctors, insurance companies, and others only knew!! Maybe they would go out of their way to make things easier!! Keep your head up and thank you for the video!

[@scotty3hotty]

Wow bruh I’m in a chair too I go through the exact same things trying to get my supplies I appreciate you posting this video it made me feel not alone

[@scotty3hotty]

The first time I unexpectedly pooped while I had a chick staying the night I went right ahead and got a Colostomy😂

[@judygarcia5348]

Thank you so much for your honest video. I know that you always put your best foot forward and always give us a friendly smiling face. But as a wheelchair user myself, I know that there are days that are not that bright and sunny. Thank you for putting it into words and pictures. I felt this down to my very core.

[@allweathersystem]

Thankyou for this video. People really don't get how exhausting "cripple time" is. Three hours of my morning just doing the stuff people manage in 30 seconds. And I just want to live and it's sooo exhausting and frustrating.

[@richardt7132]

me and you both ... I'm independent and can live pretty much on my own like you tho! (despite the inconveniences) we actually have it a lot better than fully paralyzed individuals not having to rely on a caretaker for transfers or wiping our butts, so hey it could be EVEN worse... that's what I think about sometimes when I get mad and depressed.

[@caroljohnson3698]

Me too

[@wallflower225]

You're absolutely right. I think about that A LOT, how things could be much worse.

[@paralifetv-youreverydaywhe8314]

I have the same experience here in my part of Canada. Supplies no problem. Prescriptions no problem. Physio no problem. Only thing that can be tricky is ordering a new wheelchair. We have to rely on a local medical supplier who only has access to 1 or 2 demos and if you want to try another chair it could take MONTHS to get one it and then it can't be adjusted to fit your needs! That's really the only frustration every five years ... SO RUDE BEING HUNG UP ON AND LIED TO!!! UNREAL!!

[@tinak.3022]

I just found your channel yesterday and everything you were saying hit home with me. I know from your frustration that you were at your wits end. Since you haven’t made a video in over 2 years, I worry. I’m afraid you did something that was permanent and that scares me. Believe me, not a day goes by that I don’t think about it. I hope you are still there and doing well.

[@endtimeawakening5557]

Can completely sympathize with you Richard. I've been a T6 for 21 years and it's like waking up in another world that doesn't even resemble the one you left. When you question people about the worst thing that could happen to you besides death, paralysis and blindness are at the top of the list. I could have never sympathized without experiencing it, but wow do I understand now! Hope all is well or at least as well as it can be. Your videos are inspirational and I know they're helping the many out there in the "same shoes." God bless you!

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@susancolberg935]

Richard, I love how candid you are in your videos! I’m in several support groups on line but that’s not the same as actually seeing the frustration. You rock!!

[@christinadoherty3212]

Desperately hoping this doesn’t get taken down! This video is so good and raw and NECESSARY! Thank you!

[@alexakate]

i haven’t posted a youtube video in over 2 years because i haven’t known how to come back to making videos while more visibly disabled, but your channel has really inspired me:)

[@michaelireland7218]

Thank you for your videos I deal with this and the dpression it causes also in my own way sad that seeing this I realize it's just not me and it brings a 290 pound man to tears relaizing I'm not alone in this and it's not in my head... Thank you for what you do I have been a fan for so long and your videos have been a light at the end of the hall so manytimes through my own journey. God Bless and you are in my prayers.

[@rebeccahowat-akacrazyautis7439]

Thank you for doing this video. I am able bodied but suffer greatly with Crohn’s disease. Have since I was 20. I’m 43 now. The fighting and advocacy you have to do for yourself is brutal. I’ve experienced it myself but not near the level you have. Where are you based? USA? I’m from Canada and have had to deal with medical supplies through my insurance before and it was a nightmare. Still is! Thank you for being brave and showing what it’s truly like to have to deal with medical supplies. Wishing you well!

[@kylepage9770]

This is the stuff that is embarrassing to talk about. This is the stuff that is difficult to talk about. But it’s the stuff that HAS to be talked about. Thank you so much for your vulnerability and openness.

[@ROMPE_NALGAS_24-7]

COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.

[@johnfarris5517]

Richard thanks for the honesty. I wish all of our friends understood this, but who wants to share all of your problems with them.

[@eswarikamireddy260]

I have someone else helping me with the bowel stimulation. I have neuro spasticity and can't use a wheelchair due to the pointing legs. It's tough but you are an inspiration. Looking at your videos, feeling more stronger daily. Don't get disheartened. Be strong.

[@sandras.9061]

Hi just wondering, what do you mean you can't use a wheelchair due to your pointing legs? Do you have spasticity that makes your leg stretch forward? If so, you can use a wheelchair. I have the same type of spasms and the way I keep my legs in place is with a strong velcro in front of my legs. If I misunderstood your comment then I'm sorry.

[@eswarikamireddy260]

@@sandras.9061 No. That's true. I have my right leg pointing down due to spasticity. But my left leg goes backwards. I will check on the velcro you are referring to.

[@eswarikamireddy260]

Sandra, How are you managing with the spasticity? Can you lift your hip onto the chair or you use slide board? Do you have any video how you transfer yourself to the chair?

[@eswarikamireddy260]

I can't even lift my hip. There's a reverse force pulling me down always.

[@sandras.9061]

@@eswarikamireddy260 You could try having a velcro all around your legs, so that they stay in place. And you just remove it for transfers

[@gailinax]

I was paralyzed in 2020. Thanks for bringing awareness to all of this.

[@rosiecuevas1192]

You are so right! I have Spino Cerebellar Ataxia, a progressive neurological disorder. My cerebellum is atrophying. My speech is slurred, my gait is awkward, my balance is very off. It takes me so long to do anything. And some things I'm not able to do all together. You're video is very real and not glossed over for KZbin. Having a disability to contend with is an inconvenience, and some days are just like that.

[@ChronicallyZanny]

My jaw dropped at the hang up. Damn.

[@brynnwelch4646]

This video speaks to me on every level. In addition to paralysis, I have narcolepsy and it's a full time job keeping up with appointments and calling drs, pharmacies, and insurance. The frustration and exhaustion is so real and never ending. I hope one day things change and the unnecessary stress is removed from our lives. I feel like there's all this pressure to be hyperfunctional and "inspirational" but I wish there was more space to accept that some circumstances in life just suck. Sending hugs all around

[@david94085]

Oh lord. Thank you for sharing that. So sorry anyone would treat you that way. Shame on them.

[@codysmiff222]

Man this is the best description of our daily struggles 👊 excellent work