MEGA VLOG 638: sorry we cant do that! (and why i use a wheelchair!)
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- Опубліковано 28 тра 2024
- Today is a story/rant about healthcare stuff, and a bit about why i use a wheelchair! we also talk about how a lot of us deal with seemingly impossible situations sometimes... my experiences today aren't the end of the world... but just illustrate how FRUSTRATING things can get sometimes!
(but yea.. breathing issues - makes hard to get anything done! hence 6 days between uploads :^)
0:00 intro
2:22 diggin for HATS!
6:08 plan for the day..
7:39 ADA access!
8:31 data download?
14:30 life hack!
15:28 heading back
17:13 why i use a chair
24:32 so what happened??
28:01 hospital recap
36:52 RUN AWAY!!
41:25 go talk to people!
43:50 final thoughts
Correction: 19:03 autoinflammatory - NOT autoimmune
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Rant listened to and assimilated. I feel you Dan. It really sucks when people don't understand what it's like to be losing capabilities which you didn't even think about since you were two years old. Just because you, (through a great effort), make your daily routines look easier, they sometimes assume that when you are really having a bad day, well, "you're just not trying hard enough so man up, and don't complain"!! Or when you try to share with a close family member, details about what's happening to you, and where you fear you might be in the next 5 to 7 years, and they say without batting an eye: " well, you know 5 or 10 years ago, you failed to do this or that and. . . Gee thanks. Your pep talk was very inspiring, and very helpful to me right now as I deal with my current situation. Ever heard of empathy?? Who knows, maybe someone will invent a time machine, (before I get really bad), and I might be able to go back in time a fix everything. The nerve of some people. How easy it is for some of them to resort to cruelty is mind boggling. Keep churning along and sharing. I for one have learned a lot from you that has made my journey a lot easier, and for that, I am grateful to you. Thanks!!
you mirror my thoughts after seeing dans video here almost word for word.. i suffer from several of the things dan does but also missing both my thumbs. life is hard but when you include having to deal with just trying to get the things to keep you going... its maddening sometimes. the healthcare system is very broken. i dont know if its from being overworked or understaffed. you encouter people who dont know how this stuff even works. you sit the just speechless thinking to yourself why even bother. my heart goes out to dan and 100 percent understand the frustration. yes the world is just like idiocracy. me and my wife have been saying that for the last few years. take care....
I really understand your statement about losing abilities. I was a mailman. My walking speed was running for some folk. I lost all that after a fall in 94'. Doctors don't know why my ability to walk is so screwed up. Started passing out from coughing and that was the end of driving. My dad was dying and I could no longer travel to be with him. It created huge problems with my siblings..they didn't understand. Autonomic system is failing but no one knows why. The frustration in both your comment and Dan's vlog is palpable. People with medical problems or birth defects..they teach us how to be a better, more compassionate person.
Your life hack of playing with your phone is gonna save me some serious frustration! It's GENIUS!
Big thanks Dan. My chair necessity has been a relatively new thing to me and your videos have been extremely helpful. I can’t wait to try the life hack you mention about what I call the door dance. Seems like here in the Midwest everyone wants to overcompensate on the politeness and try to “help” out. Hearts are in the right place with it, and up until seeing this I could never think of a polite way to get around the situation. Good luck, and I hope you keep the content rolling. The last few months of watching your channel have really helped me in ways words can’t express.
My architectural work has included the Americans With Disabilities Act since the day it became law. I understand the requirements and comply. 5 years ago my 50+ year old son had a series of strokes. First in a manual chair and now limited to life in a power chair with only a small amount of use in his right arm. I have a new appreciation for the elderly lady pushing her large husband up a handicap ramp, of finding plenty of accessible parking spaces, but the van space has a car blocking the ramp zone, etc. Being disabled is much harder than anyone can imagine until it becomes personal. Thank you for your videos. My son and I have restored old cars - now you help us us keep his chair going. This weekend we’ll check the slop and clunk on his left side motor.
I have cerebral palsy, but I empathize with you a lot. Your videos help me to get to know my new Permobil chair inside and out.
Also, I can't stand when people think that I'm going to go through a miracle cure.
Your videos are very informative.
Dan,
Thank you for sharing / venting.
It may sound weird but it's comforting to hear that someone else has and is experiencing similar "issues" not only with the health care system and some of their inadequate employees but also seeing someone else who uses similar "life hacks"(the door/phone trick). Our disabilities may be totally different but I think what we, as chronic and sometimes terminal, disabled people have to deal with, in a world of Normal's, cannot be understood by just anyone. Also I've found that trying to find a balance between "happiness" & "acceptance" while trying to stand up for our rights and our needs to live life to the best of our abilities, without burning any bridges (pissing off those who are supposed to be helping us) is a life skill we continuously have to adapt, especially if our conditions continue to degrade. The prejudices and assumption's of others is one of the worst aspects of life as a disabled person, in my opinion, based on my 40+ years experience being disabled.
Thanks again for sharing! And thanks for allowing me to join your Livestream today(tomorrow from the date of this video). LoL 😆.
Respectfully, Bryan aka: MrB Repairs, Sultan.
Just found your videos and my experience mirrors yours. Most people will never see these, but everyone needs to realize everyone is just a moment away from financial ruin and/or disability.
Hi Dan, glad you're getting prepared for winter, I had a hospital appointment yesterday in the respiratory department as I have home oxygen therapy, anyway the condition that I have there is no cure for just treatment. Anyway it had been raining overnight so my wheelchair has got covered in mud. I get like that and feel like I wanna shout out, it gets rid of any built-up tension lol oh and I ran over someone's foot yesterday, it kinda cheered me up anyway 😆 👍
You can talk to me, I was born with SMA and have been disabled for 64 years now. I lost the ability to walk in 1972, I went from a manual chair to my first powerchair in 1977. I was able to walk on my knees and transfer up from the floor until 2015 or so. I've been a CPAP user for a few years now. Also, I own a bus too, though I've never lived in it.
Your work and communications are so honest, complete, amd most of all sincere. Thank You. I recently passed through a 10 year "celebration" of being a paralytic (functional quad/tetra - C6/C7 Complete) who is also a stroke survivor and Epileptic. As a former Meteorologist, multiple business owner (entrepreneur), wanna be musician/philosopher, I can simply tell you this... "The Sky Is ALWAYS Blue... Sometimes, You Just Have To Wait For It!" -Just Frank- Hang In, Brother! :)
people live longer in proportion to the number of social contacts they have, so the more contacts you have and use, the longer you will have a healthier old age, talking is a live saver
I'm screwed then
@@leglessinoz Not necessarily. +1
God bless you its awful that u were treated that way, i would love to be the person you could talk to about these things. I am a wheel chair user and redgisterd blind, so i understand how frustrating it can be dealing with idiots in the medical field. I hope your day gets better, God bless you and try to have a good day 😊
Talking about it really makes you think back. Did I handle the situation right? But like you said now you've thought about it it didn't seem as bad. Definitely met some wonderful friends from your channel. Great video Dan.
Dan having been diagnosed with ALS in 2019 a person can truly not comprehend the level of invisibility one becomes once you get into a wheelchair it really sucks but I feel by waking up on the right side of the dirt everyday I’m winning so everything else is water under the bridge, also my trilogy is monitored by internet hookup and if things don’t look right pulmonary is calling and they told me that sometimes removing card from machine will sometimes corrupt data so I don’t good luck brother love your channel long time listen first time caller
This was a very important video and I thank you for being brave enough to share it. I watch Totally Normal for a couple of reasons...1. I am fascinated and more than a little envious of your mechanical skills and knowledge. I learn so much as I watch you change a battery or search out a squeak or... 2. But more than anything, I watch because of your willingness to invite us along on your life's journey, experiencing both the joys and the kind of experiences described here. Keep up the good work. You are a favorite guide for my own wheelchair journey.
Sir I respect you as a person, I am impressed with your
Mechanical skills, your a decent guy, my hat is off to you.
Thanks for sharing Dan!
Dan you rock .. you have the best outlook in life .
Dan, I hear ya! I recently spent a morning in the hospital- SOOOOO frustrating in so many ways! Unbeknownst to me, as a part of the release protocol, they set up “follow-a-long” services. Now, I can understand OT/PT support as this visit was after an awkward fall, and the ride to the hospital was at my direction(I didn’t have to go if I didn’t want too), but being stuck in a tight ball, with legs and feet numb, I erred on the side of caution.
I have CP, and growing up I had ny share ofPt, OT AND speech therapy. Now, when I’m tired or stressed you can still hear some of my impediment.
The fall didn’t cause a blackout or other trauma to my head…. So, where in the flip did they decide I needed a speach therapist to come for a home visit??! Mo matter what i do, the first things out of my kmouth are: a. I have CP and glaucoma and I can speak for myself- I have my sister as an emergency contact, but that does NOT mean she will ever speak for me without my say so!! You talk to me DIRECTLY! The first time this happens, I will warn you, the second time I go to your director. If there’s a third time, i fire you and request a new Dr. Ya may have the MD behind your name, but I have full control of my life!
As to your situation with that hospital worker, I’m sorry you didn’t get their name! I get the jump back reaction too- or worse, the people who think it’s funny to make like I ran over their foot(HUGE pet peeve!!), be glad it doesn’t happen- me AND my chair probably weigh close to 500 lbs.!🙃😄
LOL Bro Sorry you had to endure that! That lady had NO idea what you were asking! I had to stop at 14:11 to make this comment. Resuming....
Humanity in general, is getting worse. As a complete T-12 paraplegic, since 2010. I could easily go on and on with you about the harshness of people in general. I’ll share one quick one with you, if you have time to read. I was out shopping one day, it was a kind of day out for me; where I shop a bit, stop at a local restaurant etc. I was in my manual wheelchair, waiting patiently, as a woman was on her cell phone, talking away. Now, there was no way around her due to the sidewalk situation and rows of carts, that I never could negotiate out of the way. This woman, glanced at me, while I wasn’t too far away from her, but anyone could see I was needing to get through. I didn’t want to be rude and interrupt her conversation, but I looked at my phone, and 10 minutes passed or about. Finally, she got off the phone, took a hard downward look at me, as though she was sizing me up for a suit fitting, then said, in a way that could not have been more hurtful or insulting, “You need a bigger wheelchair!” Now it’s difficult in writing for me, to convey exactly how she said it, but I’ll try. Every word in her sentence was said, very deliberately, with an accentuated pause between every word, said with an almost southern accent. This is what it sounded like: “YOU…NEED…A…BIGGER… WHEELCHAIR!” I was so taken aback, that I couldn’t think of anything but the truth, as hurtful as she clearly said, so I said, “You’re right.”,as I slowly wheeled away. Oh, she barely moved enough for me. She had plenty of room to walk out of the way, but spitefully she just barely did. I almost rubbed my wheelchair into her thigh. Now, I will be honest. I’m very overweight; about 265-275 pounds, but I was, at the time, trying to also get a little exercise, since I was in my manual wheelchair. I struggle with my weight. I was never a heavy man, about 181 pounds before i fell off the roof. However, being sedentary, paralyzed from my waist down, and now almost 53 years old, my weight went up in the last 10 years. Now that I have a special floor scale, I can monitor my weight, and at least prevent it from going up. Sorry for this long novel I wrote you. Please take care. Lastly, you rant or whatever! This is your channel, if people don’t like it, well that’s on them! There is more to this day, but most people wouldn’t believe it.
yeaa.. sometimes ya run across situations like that and think 'did that just happen?' anymore though ill say excuse me a couple of times, and then tap on them, or start squeezing around or something. i get where yer coming from though.. i find myself just waiting for 'no reason' on days when i dont feel like engaging with people
As someone in a similar situation, I can 100% relate. It's usually the stupid/rude people that are more stressful than the disability itself. I can count on more than two hands the number of times medical staff have asked me if I can stand. Also, as someone on a trach/ventilator (electively done) I can tell you it's worth it and not as scary as it's made out to be. Breathing and talking is so much easier. Anyway I love your videos! If you know anyone who wants an old Permobil Street Corpus power chair let me know.
when breathing stuff get difficult (at least for me) ALL i care about is making it easier! and dont really care what that looks like.. thanks for sharing!
@@TotallyNormal- Yeah I totally agree, difficulty breathing is one of the worst feelings there is.
I've experienced about the same situation with one of my first cpap before I was put on my bipap. The doctors have to pay for the software that allowed my machine to communicate... so this dr obviously didn't want to pay for the software license going forward. So this left me downloading it to the phone each visit. I'm no longer a patient of that doctor anymore.
My next major experience with doctors staff was dealing with the pharmacy talking to the doctors office. My script wouldn't go through. Doctor would say they sent it and the pharmacist would say no. Of course it is a med that is considered "controlled" to add to the layer of issues. On one of the phone calls I finally go cursed, I didn't call anyone names I didn't say more than "I'm tired of these bleep issues". So my next visit to my doctor asked did you curse out my office staff? Me not even recalling it at the time I was like, I don't think so. Then she read me back that exact phrase and said if I cursed her staff out again she would not only stop seeing me as a patient that she would stop seeing my entire family. I replied, yes I understand I let a single word slip but did you realize that was a 3 day event for me trying to get your nurse to communicate with a pharmacy? 3 days of going without a needed med. Exactly when do you reach your limits? She replied, if you were an employee of mine and that happened I would have fired you. I replied but you are my employee in this case. That is when the subject was dropped and she is still my family general practitioner. I no longer share information with her because I feel like a bond was broken... if that makes sense. I say all this to say, being disabled is beyond a full time job... it isn't something you can just clock out of or go some place to get away from it. This follows you for life in most cases.
Sorry you had this experience. My issues are hidden by autoimmune stuff. I so want to put stickers on my chair that says yes I can stand and walk a few steps but the price is too much. Not all disabilities are seen or simple. You don't know my trade off for doing things.
Here In Minnesota We Have
Ramps All Over. Shopping Centers Super Markets
Wow, I can feel some of your anger and frustration. I don't yet have a diagnosis and use a scooter or wheelchair when we go shopping because I am such a fall risk. I can still walk, but that ability is going away. While some people are compassionate, too large of a percentage are just self centered ..........and I don't have a polite word here. Big frustration for me is when the store's cart dies about as far away from the front as possible. Batteries should be swapped out after each use for one with a full charge. Too many people never find what is their calling much less what they can do reasonably well....and then it becomes our problem, trying to help them do their job. You do make great content.
I do my best to report the situation. If it is affecting me, it is probably affecting others. So I do take down names , date, location it happened and send it in. I know it can be a lot of work, and there are days that you are just not up to it. I do it when I have the energy. Up to each person on how they want to handle things and what energy they have left. But I support you all the way with the annoying/lack of knowledge stuff. Liza
Just a little thank you for sharing your story I've followed you a good while now and always wondered about your condition but as I am an Englishmen and far too polite to ask someone a question that is absolutely non of my business but as a human curiosity always stirs within I have spina bifida myself and was lucky enough to live a normal life up to my mid 20s then tethered cord became a problem for me roll on 25 years im a full time wheelchair user with very little use below the waist ,
Dan, you make it sound pretty easy, I fell victui to a Spinal injury C4,5 & 6 & left hospital in a power chair. Currently I'm the youngest guy a a Senior center. I've met a couple people with power chairs there, but they don't look like they're open to conversations about their injuries! I' looking at A foldable unit so I can get out more, hearing too many variables saying not strong underpowered crap, can't just order one & test it without repercussions. Does your buddy at Generic Traveller still have his Chinese made portable?
so that chair got destroyed by united airlines... they bought a replacement and that one fell apart.. now he's using a traditional rehab chair
Hey buddy, thanks for sharing. Scrubs are color coded? Badges time and building/door location scan? HR might want to figure out a bad egg. I'm off the Twtters...uncertain next best option for talking but I'm around...
shoot me a message via the website contact form, and we can see what other non-twitter options are are :^)
Thanks!
icecream founds :D
Thanks for sharing. I didn’t even know where to begin about people who are bad at their jobs. I can’t speak to call them out on their bad work. I’m curious about the brand of wearable camera that you used?
it's a "frontrow" wearable camera.. they were made by ubiquity networks for a while.. i got mine as new old stock from ebay for decent price.. but the things were over $400 new! not worth that much IMO.. but its a nice low-key way to record things :^)
Glad to hear about your totally crazy few days.. ... i am sure you know the main problem with people.. they are people...
I have stopped using my c pap due to corrupted SD cards. I got tired of having to have new ones put in, only to find they are not recording the data. The employee was completely in the wrong, sounds like maybe healthcare is not the right line of work for her. Compassion should be stressed over all else. I have had to move people blocking a curb ramp numerous times. People just don’t think that people actually use them. One time I was actually told by a person blocking the ramp that they were disabled. Definitely a WTF moment.
Yeah Dan, we get it. Luckily I have a significant other who is also in a chair with other issues so we kind of bounce off each other.
Come to a curb, no cut or ramp. Ask employee of business out smoking where the ramp is. "Just stand up and run the chair up the curb and then get back in"...ramp is a block away...what the heck?
Dan , what a 24 hrs, we can't cure ignorance and you can try to inform others but we can't help if they don't have the compression. We say things to professionals they interpret what we say in their own way and it screws our lives because they think they know better.
Hope you track down your ful sets of cold weather wear
That woman is the same type of woman that would run you over at a crosswalk with the light in your favor and then blame you. Never mind she was taking a right turn on red without stopping first while talking on her cell phone with an obstructed view.
I know this won’t help at alll…but you have the most beautiful eyes in the history of ever.🤩
I have ALS, and the respiratory therapist comes to my house. She is an older lady, and she has me fix all her computer issues while here because their local IT support is terrible. She hooks me up with demo mask and other equipment she gets in exchange. It's one of the best patient/provider relationships I have. I have had many, many experiences like yours, too, especially with waiting rooms and unscheduled visits. Recently found the channel searching for wheelchair mods and got hooked. Love the channel. Hope your next experience with healthcare goes much better.
Sometimes I get so angry I think I'm going to turn green . I've been in a chair now for 4 years f3 first thing I noticed was being in a store aisle and all the sudden it was empty or somebody will go to work down the aisle and turn around and go in another Direction. the only reason is me and I really love the comment I like your chair I never know what to say
That was a rough day. The person at the stairs was infuriating. Sorry you had that in addition to everything else that day.
I get it. I sometimes curse so loud the world hears it. After I feel better. I'm married and sometimes my curse is to my wife. She is my caregiver unfortunately. She is stuck in this hell with me.
I'm same boat your issues are similar I have a form muscular dystrophy as well
I Was Born With A Vission
Impairment. & Was Put In Special
I Repaired Transister Radios
To Keep My Self Bizzy.
& I Was Put In Special
Ed. But What Good It Do
Me Then When I Was 18 I Was
Put In A Special Needs School.
On The Count Of My vission
Impairment. That's Why
I Couldn't Go Take Up
What I Wanted. So After I Got
Out Of School. I Felt Like ABird Out
Of A Cage. & Then I Coninued
Doing Repairs On Electronics.
& I've Always Been Asked How
Can I Do The Things I Do
With My Disability? & I Tell
Them I Just Do It.
sorry to say Dan the voicemail thing is getting more and more common or you get to a Dr. office and wait 45 min to an hour after your appointment to get to the back and then maybe wait another 20 or 30 min to see the provider... its like the nurses aren't being trained properly any more or just don't care and are just there for a pay check but i agree with you about the issues you have I've experienced the same thing and I'm on a bi-pap as well and the last time i had to send my data in they couldn't get the data ether so i took it to the retailer were i got my bi-pap from and they couldn't get the data ether but yet same sanario i use the same software like you do that the pulmonary people use and the retailer that provides the bi-pap ... i got the data but neither one could get it i told them i could send them the data but they said they couldn't input it in to the system even if i sent it in as the proper format the software uses its just an issue of untrained or people that just dont care and are there for a paycheck .. but i digress or im going to get in to a rant myself i hope it all turns out.
People ask me if I have a support group ? I tell them “yes , I go someplace quiet & alone , bitch and moan , get it off my chest , and then , I check my attitude at the door , and resume living the best life I can “.and it’s a treat to her you speak of “genetic mutations “, I know exactly what that is short for or more correctly the drama you lived getting answers that it conceals , we the genetic mutated understand that , it’s just a fact of our lives not a complaint or whine , it’s understated and simple yet speaks volumes to those who understand and have our own stories that “live “under those words . I am in a community that we frequently like weekly have somebody transitioning vent things , getting Supra Pubics and colostomy’s . Just remember bro you have a community who respect and admire the journey you share with us .
A.J Mic u sound nice my the force be with you.
Wow dude, your "totally normal" is actually totally rad!
My wife, like you, will not take any shit from people who have coments like that and it really takes courage so good on you! I myself starting to suffer with my muscular dystrophy at the age of 31(I gues lucky to get this far) currently building a fast boot scooter, but in reality I'm building it because I think I may not be able to do it in the future.
Adam said life's like a box of chocolates, unfortunately mine are melting!
I would just downloaded it and send to the doctor directly…. I been their and had someone give me shit about my speed I move at .. I’m always aware of you in front & around me/. People suck worst of all they walk and stop in front of me .
Hi Dan, your video today push me to shoot 3 extra pain killers, it is good to see still we do have some ass face in the paplution :D take it easy , thanks for sharing
Don't feel bad because I'm 64 and this world have change within the last five years against the disabled people, and hospitals and doctors and wound care they don't really care about the handicapped people and we have no protection because of their action. Trust me I'm going through a lot myself especially born spina bifida and in 2021 a medical malpractice and 2022 there was a 911 call with false statement against me but I have the actual recording that day that I was on the phone with wound care, but the main company do not care whether I have proof or not... But they prefer to believe in one employee over a disabled person that will die with infection if it's not taking care of soon because I was kicked out of wound care over that one lady lied about when I have proof at what I actually said. And it's a good thing you have your camera on you as well with the audio and video for your own protection.
I get a kick out of people freaking out when they see me in a wheelchair
it's the 'rat dance' like when people see rats all over the ground and start stepping really tall for some reason lol
Hey I have a question Where can I find a programmer For my quantum We'll chair So I can program it Myself
if the chair is running Q-logic 3, then the only way to program things, is at a dealer/DME... (most of the chairs within last 2-3 years run Q3) its all super locked down :^/
Healthcare workers tend to receive abuse daily, thus they build up a shell of defense mechanisms which logic sometimes fails to penetrate. They feel marginalized by the system also, and do not realize how they contribute to inefficiency. But healthcare administrators are less medical folk and more business folk. They have systems which the hospital paid a ton of money for which organize the rolling of fecal matter down an incline in order to improve efficiency. If you submit a detailed written complaint (to main hospital administration) which includes the employees name, which should be visible on a badge, the complaint will be delivered to an immediate supervisor who is required to take and document action. Because it is being delivered by a coworker, it bypasses some defenses to actually achieve improvements in care, or it raises additional defenses triggering a cascade of events resulting in retirement of someone, maybe the supervisor. You won't notice it, but the next person might get better care.
In your case, the hospital needs a secure web portal to receive the data from your card, via internet, without you ever leaving home. That will allow more employees to remain safely locked behind frosted glass, generate work for the in house programming team and external contractors. Your written complaint could generate a million dollars in expenditures over years to duplicate a functionality that mostly already exists on your phone. To improve efficiency. Your choice, use the machinery or not.
And if the employee's name was not clearly visible on their badge? Well that is a security violation handled by a different department all together which is immune to and completely unattached from the administration's efficient systems. They will look at your video, ID the employee, and file a paper report which is never seen by anyone.
I can understanding with your day in this hospital personal specially technical help are..this is too bad and this discrimination with people on wheelchairs... you should send a letter to president or board of trustees of hospitals so they be aware of this situation with their employees which can’t acceptable in our environment....copying to to more personal departments so they can re-train such their employee... thank you....
I hear you, and have been in a similar situation. I had a car accident 37 years ago and have a spinal cord injury. You are correct, people that are not in chairs have no clue what we go through on a day to day basis. As I get old it takes me longer, I don't have the strength I once did. However, if I would have been in that hospital with a tech person that was suppose to get your data and they couldn't, but I knew how like you do, I would have said please let me show you a secret or get out of my way you idiot. Now the person going up the stairs, I would have be yell as loud as I could at her, she would have gotten a name thrown at her I would almost bet money she would have come back down. Yes it sucks, but life goes on or it doesn't. I try to remain positive and joke around a lot. I do believe in God and everything happens for a reason. Hang in there as you are one intelligent dude. Now off to Twit or X to ask a question!!! Have a blessed day.
stories i have a few but too many to mention, i just imagine i am black and live in a ghetto and have the same problems, that usually gets me through, some times i don't like you but some times i love you , now if I can come up with a melody.
I'VE BEEN WATCHING YOUR VLOGS FOR A COUPLE OF DAYS NOW, ENJOYED THE TRIP TO PLAY SOCKER AND NO MATTER HOW FRUSTRAATING IT WAS YOU ALWAYS FOUND A SMILE AND A LAUGH AS YOU OFTEN DO WHILE WORKING ON POWER CHAIRS. I'M BEDRIDDEN BASICALLY BUT IN THE CHIR FOR PAIN MANAGEMENT AND DR APPT'S. YOU'D THINK IF THEY KNOW HOW BAD YOUR SITUATION IS, YOUR HEALTH THEN WHY MAKE YOU DO A 70 MILE ROUND TRIP TO FILL YOUR SCRIPTS FOR YOU WHICH IS A MILE UP THE ROAD. ANYWAY, THEY FINALLY CHANGED IT TO EERYOTHER MONTH WHICH IS GREAT, BUT AT 80 YEARS OLD AND HAVE MUTIPLE HEALTH ISSURES AND YOU CAN'T REALLY WALK, TOO MUCH PAIN AND LITTLE BALANCE THEN COMMON SENSE SAYS THIS IS AN ALL DAY CHORE TO GET READY, GET DOWN THE RAMP, HUSBAND HAS TO SLOW WALK ME TO THE CAR AND I USE THE CAR ITSELF TO HELP, THEN PLOP DOWN AND WAIT WHILE HE GETS THE CHAIR ON THE LIFT AND TIED DOWN THEN A 35 MILE RIDE TO A DISTANT TOWN BECAUSE MY TOWN HAS NO PAIN MANAGEMENT WHICH REALLY MAKES NO SENSE BEING THE PRECMIRE CITY OF OUR COUNTY, BUT IT IS WHAT IT IS. LIKE YOU I SMILE AND SPEAK FREIM=NDLY, POLITELY, MOST ARE NICE THERE AND MY APR NURSE IS A REAL SWEETHEART SO I ENJOY SEEIN HER. A COUPLE OF MONTHS AO I WAS SO SICK FOR SO LONG I ENDED UP IN THE ER WHERE NO ONE SMILES, NO ONE TRULY CARES, NO ONE IS POLITE OR NICE AND THE ER TABLE IS A TRUE TORTURE DEVICE FOR SOMEONE WITH SEVERE BACK ISSUES, NO DISCS LEFT IN MY ENTIRE CROOKED SPINE FOR MANY YEARS ALL I CAN SAY IT IS SHEER AGONY. FINALLY THE ER LADY DR, I GUESS A DR, COMES IN AND HANDS ME 2 PRESCRIPTIONS, SOME GUY GETS ME INTO A WHEELCHAIR LIKE I'VE NEVER SEEN BEFORE, LONG AND NARROW, NO ARMS, I KEPT SLIDIN DOWN THE THING WHILE HE'S DOIN 90 THEN I'[M AT THE DOOR AND HE SAYS CALL YOUR HUSBAND AND PRACTICALLY RUNS AWAY LEAVING ME STRUGGLING TO STAY ON OR IN THIS WEIRD CONTRAPTION. MY HUSBAND SAW ME SITTING AT THE WINDOW STRUGGLING AND HE GET'S REALLY UPSET WITH WHAT IS GOING ON.. I HAD ALREADY BEEN VERY SICK FOR 2 WEEKS, NOTHING WOULD STAY ON MY STOMACH SO BOTH ENDS IN CONSTAND FLUX, I WAS SO WEAK AND HAD SO MUCH PAIN IN MY STOMACH WHICH NO ONE EVER EXPLAINED WHY BUT ONE SCRIPT WAS FOR THE PAIN IN MY STOMACH UP AT THE END OF MY ESOPHAGUS NON STOP BAD PAIN, AFTER A WEEK I DISCOVERED KEEPING A HEAT PAD ON MY STOMACH HELPED SOME.. SO THE OTHER SCRIPT IS FOR 10 DAYS OF ANTIBIOTIC AND THE MEDS FOR THE STOMACH PAIN MADE THE PAIN WORSE SO I QUIT TAKING THEM AFTER 3 DAYS. EACH DAY I WOULD FEELJUST ENOUGH BETTER THAT I COULD ALMOST SEE LIGHT AT THE END OF THE TUNNEL. AFTER 10 DAYS I WAS MUCH BETTER, I WAS ABLE TO EAT A LITTLE AND I DID NOT LEEAVE A TRAIL ON THE BR OR HALL CARPET, I DID HAVE TO BUY A BEDSIDE COMMODE TO KEEP UP WITH CHANGING MY CLOTHES AND STRIPPING THE BED AND REDOING IT EVERY FEW MINUTES. MY POOR HUSBAND WENT THROUGH AN AWFUL LOT,I FELT SO SORRY FOR HIM. I UNDERSTAND FRUSTRATION, ESPECIALLY WITH HEALTHCARE WORKERS, WHY DO THEY CHOOSE THE FIELD? i'VE HAD GREAT DR'S AND TERRIBLE ARROGANT ONES BUT I'VE MADE IT THIS FAR I FIGURE I'LL MAKE IOT TO THE END. YOU ARE AN AMAZING PERSON IF YOU DON'T KNOW THAT. YOU LAUGH A LOT AND HAVE A GREAT SENSE OF HUMOR, YOU WORK ON THOSE CHAIRS SO HARD AND KNOW SO MUCH I WONDER IF YOUR JUST NATURALLY MENTALLY GIFTED TO KNOW AND UNDERSTAND ALL YOU DO. I PERSONALLY THINK YOUR AN AMAZING HUMAN BEING. THE PEOPLE WHO RAISED ME THOUGHT I WAS A PUNCHING BAG IN A GYM FROM THE BEGINNING OF MEMORY AGE 2 I'M TOLD. MY BACK INJURY BEGAN AT AGE15 ON MY BIRTHDAY, THANKS SO MUCH. I WAS QUIET AND POLITE WITH A GOOD DISPOSITION AND GORGIVENESS FOR THINGS I DIDN'T UNDERSTAND. MOM LOVED TELLING ME MOST DAYS HOW MUCH SHE HATED ME AND TRIED TO ABORT ME AND ALWAYS WANTED ME DEAD. MENTALLY THAT'S NOT A WAY TO LEARN ABOUT LIFE BUT I HAVE A GOOD DISPOSITION GOD GAVE ME. I WAS TALLER THAN THE BOYS IN MY CLASSES UNTIL HIGH SCHOOL AND EVEN THEN SOME WERE AS TALL AS ME. I WAS WELL PROPORTIONED AND HAD SOME NICE FEATURES, BUT A BIT LEEARY AROUND OTHER PEOPLE, ONE GET;S THAT WAY. BUT THE THING IS, WE ARE WHO WE ARE, WE ACCEPT IT OR GO CRAZY, IT IS VERY FRUSTRATING AT TIMES BECAUSE PEOPLE ARFE TOO EAER TO HELP OR TOO IGNORANT TO MOVE. MY VERY OLD JAZZY BOUGHT USED ABOUT 19 YEARS AGO IS STILL WORKING, BUT I NEED ALL TERRAIN BECAUSE OF OUR GRAVEL, SMALL AND BIG GRAVEL DRIVEWAY. MY RAMP CAME WITH THIS HOUSE THE LAST HOUSE, I HAD MY JAZZY AND A LIFT, I SAVED UP AND BOUGHT A USED SUV TO CARRY THE LIFT AND CHAIR. BUT IT'S A WALK FROM THE RAMP TO THE PASSENGER DOOR SO HE AND I STRUGGLE TO GET THERE AND GET MER INTO THE SUV. GETTING READY, DRESSED, SHOE'D AND INTO THE SUV IS A PAINFUL BREATHLESS STRUGGLE AND WE'VE ONLY BEGUN THE DAY. BECAUSE OF THE DRIVE AND THE RAMP ONLY GOES TO IT I CAN'T EVEN GET INTO THE YARD OR ONTO THE STREET AND I'VE ALWAYS LOVED THE OUTDOORS AND MISS IT. THE BACK OVER THE YEARS JUST GOT WORSE AND WORSE, 4 BABIES AND ROUGH DELIVERIES DIDN'T HELP. PLUS BECAUSE I'VE BEEN TALL SINCE I WAS 10 OR 11 I'M GENERALLY CONSIDERED STRONG AND I USED TO BE STRONG, WE WERE OUR OWN MOVERS, I WORKED AS HARD AS HE DID IN OUR FIXER UPPERS TO MAKE NICE HIMES THEN HE'D WANT TO MOVE BEFORE EQUITY SO OFF WE;D GO AGAIN. I WAS DAD'S YOUNGEST SON. BUT I JUST WANTED TO SAY I DO RELATE, I DO UNDERSTAND FROM CHILDHOOD TO THE INEVITABLE. YOU MAKE ME SMILE AND LAUGH AND WATCHING THIS VIDEO I WAS ACTUALLY NODDING MY HEAD AS I LISTENED TO YOU POURING OUT YOUR HEART, NOTHING WRONG WITH IT, A RELEASE VALVE. KEEP SMILING, KEEP LAUGHING ANDD DOING THE BEST YOU CAN DO EVERY DAY. BIBLICALLY WE'RE AT THE END, TIME TO LOOK UP, "YOUR REDEMPTION DRAWETH NIGH" IT MAKES ME HAPPY KNOWING THE RACE WAS WELL RUN DESPITE ALL OF IT. LIFE GOES ON AND SO DO WE. GOD BLESS AND KEEP YOU AND ALL OF US WHO LIVE IN FRUSTRATION AND PAIN, SINCE WE CAN SMILE WHY CAN['T THE WORLD? WE'RE THE LUCKY ONES.
I am new. I am enjoying your videos.
In a situation such as you had with the heath care worker, I have found that a healthy vocabulary of profanity can be useful. In this particular instance, though, profanity was unnecessary: when she said she was in a hurry, you response could have been, "So many bed-pans to empty ...so little time! Have a nice day." ALWAYS get the last word with an idiot bi-ped.
You had a very strange experience. Yes, I have had strange experiences with the abled body community.
Hey man I am now in a wheelchair cuz I got diabetes and they had to cut my leg off I had the exact same thing happened to me the other day at the hospital
welcome to the club! lol hopefully they can get things sorted out for ya..
See That's Why I Don't Mess Around
The County To Fix Anything
Like my Chair Or My Hospital Bed
I'm A DIY'R
The employee with the sarcastic comments was very unprofessional and considering that she was at work, doesn't say much for her. So her ignorance speaks for itself. I would have gotten angry too. The frustration with the technician for you vent was harder for me to handle than the ignoramus's idiocy. So you don't need anyone to agree, but I agree that you've had a rough day here. Glad it's over. All the best, Sean
Yeah bud i deal with stupid people and thier remarks. I feel for u. As a quad what i endure. Idiocracy is the best. Every time i watch it seems more like a documentery
dan... i feel your pain. we have to meet there bud. we definitely have to go to the gun range to release some of that frustration. i know a place we can go to in idaho on your next visit. stay warm and keep an eye out for naked racoon men lurking around your bus eating those wild rabbits. lmao i will keep my spare wheelchair charger plugged in for ya. take care...
take a pic of the data lol!
I THINK I KNOW HOW YOU FEEL I AM A VIETNAM VET 100% DISABLE IN A WHEEL CHIR FOR ABOUT 15 YEARS I IN A AREA THAT WAS SPARED AGEORNGE I CAN NOT WALK AND MNY OTHER THING I AM 80 YEARS OLD I HAVE A LOT OF NEARVE PAIN I AM ON MORPHINE AND ALOT OTHER DRUGS AND LATELEE THE VA LET ME RUN OUT OF THE PAIN DRAGS I JUST WENT THRU 5 DAYS WITHOUT PAIN MEDS I DO KNOW HOW YOU FEEL
I have watched a lot of your videos and I like them I try to learn a lot from them but as far as dealing with people I do the best I can in my current situation because there's nothing else I can do you just deal with people the best way you can and Everyone's entitled to their own opinions and I'm entitled to mine I try not to let rude ignorant ass people get to me because it's just the way it is you can't fix rude and ignorant you can just try to deal with it that's what I do in my current situation because I have no choice and if people want to be rude and ignorant towards me I open my mouth and I spit it back to them and there's a lot of times in my life I just bite my tongue and ignore cuz some people in life just aren't worth my response but I make up my own mind who I choose to respond to it is what it is and I just try to move on with my life
I get it I see that a lot of people being jerks one day at my work it’s only me and like a couple other employees everyone else left so I need to be the one to ring up alcohol because the other cashier isn’t old enough is this lady who has like 12 bottles of wine she showed me a picture of the price that it it says when you get 12. I ring the bottles up and and I give her the 15% off discount she’s like oh no that’s not the right price I say OK I go get the manager he says oh just suspend it and do it again I’m like OK at this point I’m a little more frustrated because when my other manager says I’m not supposed to change the price of alcohol so I suspend the order and I ring it up again and as soon as I rang it up, she’s like oh you’re doing the exact same thing so it’s gonna be the exact same price and I’m like oh my gosh I’ll go get the manager. He does it at this point I’m about to I just leave because I don’t wanna deal with that anymore so I get you that people are stupid and people are jerks. But the social norm after the pandemic change so dramatically that I don’t know what happened or what’s going on to people after the pandemic like, did the pandemic change peoples social norm? There’s my little rant of the day.
Sorry, it’s so long
I am computer illiterate, but if thats your job you should have the skill.
I wanna find a beanie like that.heat shield
these are the ones :^)
www.columbia.com/p/stuart-island-omni-heat-infinity-watch-cap-1981991.html?dwvar_1981991_color=449
I am just lonely and I don’t have any friends
You will get more friends than you know if you just reach out more Robbin. We love ya buddy! And you need to visit with Dan at MEGA VLOG 638 to see how to fix your chair for getting over those rocks in your video.
Sounds like Karen’s where out in force and we’ll trains on ableism sad when it comes from someone at a healthcare facility. My worst Karen tried to physically lift me up and move me in a target…
why
Hey Dan my name is Rob I have cerebral palsy I've had cerebral palsy since my birth I've been in a wheelchair my whole life and I am on my third power chair I've had three Quantum q6 edges I'm on my third Quantum q6 Edge I have the q6 edge 3 I've never had too many problems with a q6 edges but as far as dealing with people medical staff and anybody there's always going to be rude ignorant ass people in the world and unfortunately you can't do anything about that but I've been in a wheelchair with cerebral palsy for 57 years and I put the point in my life I just ignore most rude ignorant ass people people are always going to have opinions and make comments and a lot of people I've ran across in 57 years of my life some people are nice and pleasant and try to be respectful but I've ran across a lot of ignorant people I try not to let their comments and rudeness and ignorance get to me because there's always going to be rude ignorant people in the world and there's nothing you can do about it but there's also an old saying that goes you just can't fix stupid I try not to let rude ignorant people get to me and I do my best just to ignore him everyone is entitled to their opinions and I am entitled to mine but most of the time I just ignore rude ignorant ass people because it is what it is and there's nothing you can really do about it and as far as hospitals and medical people and medical staff if they want to be rude and ignorant towards me I just opened my mouth and throw it back at them but I try not to let people like that get to me and I just do my best to move on with my life
You do realize you say I'll explain later in the video. But you never do explain later in the video. Annoying to be honest
you mean the part where i say 'later in the video' and then later i spend 7 minutes talking about it? there's even time-coded labels to quickly skip to different parts...