Awww, that's kinda sad! Hmmmm, Disneyphobia Actually the one attraction they had always kinda gave me the creeps, it was the "It's a Small World" one. No problem with the Haunted House though!
mtbakervapor
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Awww, that's kinda sad! Hmmmm, Disneyphobia Actually the one attraction they had always kinda gave me the creeps, it was the "It's a Small World" one. No problem with the Haunted House though!
That made me chuckle a bit. The looks on their faces must have been priceless. My favorite is when people tell me how "lucky" I am to get "prime parking." They never know what to say after I tell them "yeah just needed 2 surgeries, have a hip that locks whenever it it feels like it and not have the ability to run. Honestly I'd rather be able to run to class." A few times it's led to people asking why. That I don't mind. I've been explaining what I have to people, including doctors most of my life. I'd rather people ask and treat me like every other person than wonder and treat me different.
I have actually only parked (or been parked, technically, since I don't drive) in the closest handicapped parking space five times in my life. The reason I can count them is because every time, it was the doctor's office, and I was there because I couldn't breathe.Otherwise, I take the furthest handicapped space, because there's always someone out there who needs a closer one than I do. If it's a particularly good day pain wise, I won't take a handicapped space at all.
I have a personal rule never to glare at someone who looks ablebodied but takes a handicapped space, because many of my friends have "invisible" disabilities (cystic fibrosis, heart problems, etc) that cause them to need a handicapped space even *more* than I do... benefit of the doubt is my general operational mode there. However, when I see someone park in a handicapped space and *sprint* into the building? Hie thee to the back of the lot,! Seriously, the point of those spaces is to make it a little easier on those who can't *walk* far, for whatever reason. If you can *sprint*, I don't care what disability you may or may not have, clear the way!
I had an argument about this with a single amputee friend of mine once. He maintained that his permit wasn't gained under false pretenses, ergo he was entitled to use it. My reply? "Dude, I've seen you run a 4 1/2 minute mile. Unless you *forget your prosthesis*, step off!"
I was staying with some friends near Orlando quite a few years ago, and we picked up some friends of the people I was staying with. The guy driving was the guy I've mentioned before who's known me since we were 12-13, so we got to the restaurant and he just automatically pulled up in the last available handicapped space and tossed my permit on the dash. I didn't think anything of it, cause we've done this a million times... then from the back seat, one of the friend of a friend's pipes up:
"Um, I don't think we can park here."
G looked at me with an expression that said "Oh, please, can I have some fun? Please, please, please?"
Being a good sport, I nodded, and he said, "Oh? Why not?"
"These are for.... you know."
G assumed a blank look. "I don't know what you mean, man."
"Are you stupid? These are for handicapped people."
"Ohhhh, that... yeah. I'll move the car. Wait, one sec."
Whereupon, of course, he casually unloaded my chair from the trunk.
"Hey, look what I found! I think we're good now."
The friend of a friend was *aghast* now. "You're sick! You drive around with a wheelchair just for the parking? Oh my God!" Turning to me, "Did you know he did this?"
Me, straightfaced: "Actually, I asked him to."
Friend of friend: What kind of people are you?!"
Me: (slowly doing a pivot transfer)
(crickets)
Me: Well... we're smarta**es...
Sometimes it's just fish in a barrel, what can I say.
I watched the AMAs and Miley finished the show with a very strange lip singing cat on the big screen behind her, wonder what she vapes
But she did not twerk Dusty!!!
Thank goodness for small favors!
I just don't care for her one bit, can't stand her haircut either, however I am surprised she hasn't sported mullet like her old man did when he did "Acky Breaky Heart" I got so damn sick of hearing that song, my second job that I worked was as a bouncer at the "Davie Junction" a Country Western Club and they had line dancing lessons on Sunday's and they played the hell out of that damn song. 
You got something though? Wasn't it a Vamo?
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
I had a handicap parking permit for about a year. Had to use scooters to get around. The worst part was I was young and looked healthy so I always got 'looks'. People could not see that even taking ten steps with four blown discs, sciatica so bad that it caused me severe nerve damage in both legs, etc. All they saw was some healthy looking guy riding the scooters. I had to convince the cardiologist that the reason why my heart rate was in the 150's all the time was because of the extreme pain I was in. He didn't want to clear me for the surgery so I looked him in the eye and told him that if he didn't then I'd just put a bullet in my head and be done with it because I couldn't live with the pain any more (My spine had degenerated quite a bit as well due to the length of time I had been injured but that is another story I don't like to think about and won't bore anyone with).
It is something I don't like to think about a lot. My very limited experience showed me that people with chronic back issues are immediately treated as drug seekers by most doctors. The cardiologist took me seriously and cleared me. But I couldn't do it again with the neurosurgeon who said I had lost too much weight, my heart rare was too high, etc. So my primary care physician, pain management doctor and surprisingly the cardiologist too all talked to him and convinced him to do it. Thank god. I feel for everyone who has to deal with constant pain every day and struggles with all the judgment and 'looks' they get. Not a day goes by when I am not in pain from the nerve damage but it is manageable now without medication and I function fine on most days. Colder months cause me some issues but I will take it over what it was any day of the week.
It was a great learning experience for me on many levels.
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
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I think that's what led me to want to mess with those people a little bit... I figured I was entitled to a laugh before the inevitable "Oh my God, I didn't know, I'm so sorry, you don't look disabled, you look *great*!" As though a) being disabled is something to be sorry for, b) there is any such thing as "looking" disabled, or if it matters whether you do, and c) as though they need to emphasize that looking "normal" from the waist up is the be all end all of life.
I know that's not how anyone *means* that stuff. They just don't know *what* to say, so they say stupid things. But some days you can smell the pity and the Otherness (ooooh, they're not *like* us, those disabled folks!) coming, and you're just not up for it, you know? (That was rhetorical - I know you do.
) I usually beat people to the punch with the "good parking" and the "line skipping" etc type jokes. It's dumb and I'm sick of doing it, but if I say it first, then they can't hit me with it later when I'm trying to enjoy myself. My cousin, god rest him, facetiously called handicapped parking "roundbutt parking," because he hated the utilitarianism of the International Accessibility Logo, so I usually combine two jokes in one... "Yeah, hang out with me and you get the roundbutt parking." New people are usually so freaked out by my flippancy combined with the fact that I just stole their joke that they go "haha! Yeah..." and change the subject, which is just how I like it.
You have my utmost sympathy re: having to wait for your hip to go, btw. I'm waiting on my shoulder to finally bite the dust before they'll replace it... it's an 8 on the pain scale on a good day, but I can also raise my arm about a foot off my lap, so no dice till I can't push my chair at all, essentially. It sucks.
Re: explaining what you have to doctors, oh yes. You wouldn't think that having one of the most common congenital disabilities on the planet would require that, but I've had this conversation many times:
Doctor: So what's your diagnosis?
Me: Spastic diplegic cerebral palsy.
Doctor: And how long have you had that?
Me:..... since birth.
Doctor: But how long have you had *symptoms*?
Me:.... it's congenital.
Doctor: No, I'm asking about *symptoms*.
Me: *sigh* since November 16, 1981.
Doctor: Okay. Wait, that's your birthday.
Me: Yes, because I have *congenital brain damage*.
Doctor: Brain damage? You seem to do very well for yourself...
Another one from the Cereal Box Top School of Medicine, I see!... so don't worry, it's not cause what you have is rare, cause mine's decidedly not and it makes little difference. There's a bottom 20% in every graduating class, including medical school.
vaping some Sweet Cherry Bomb now. It's pretty good stuff. Watching JFK's funeral and finishing up the herb butter. I'm a real party animal.
Thanks for that. I had forgotten.
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
I
Nowadays when a doctor gets into all that I just show them the scars from the surgeries and my two-inch-thick medical file that I keep a copy of and ask them if they want to read it while I wait. They usually just give me what I want at that point and if they don't I find a doctor who will. I have no patience for dealing with doctors who want to push whatever medications the drug companies are paying them to and ordering tests that have already been done dozens of times already. I am not a fan of the medical industry and most doctors with a few exceptions. Occasionally I find a doctor who will listen or can be prodded into waking up out of his coma to see what's going on and those are the ones i stick with.
And I will never let an orthopedic surgeon near my back. Ever. Dealt with two of them for years and they were idiots. One told me to 'just live with it because there is nothing wrong. The MRI doesn't lie'. Took that same MRI to a neurosurgeon that was recommended to me and he took one look at it and said I had degenerative disc disease and he could help... and he did. The second neurosurgeon was also very good, he was just afraid I would die on the table because quad spinal fusions aren't done every day
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
I think that's what led me to want to mess with those people a little bit... I figured I was entitled to a laugh before the inevitable "Oh my God, I didn't know, I'm so sorry, you don't look disabled, you look *great*!" As though a) being disabled is something to be sorry for, b) there is any such thing as "looking" disabled, or if it matters whether you do, and c) as though they need to emphasize that looking "normal" from the waist up is the be all end all of life.
I know that's not how anyone *means* that stuff. They just don't know *what* to say, so they say stupid things. But some days you can smell the pity and the Otherness (ooooh, they're not *like* us, those disabled folks!) coming, and you're just not up for it, you know? (That was rhetorical - I know you do.
I usually beat people to the punch with the "good parking" and the "line skipping" etc type jokes. It's dumb and I'm sick of doing it, but if I say it first, then they can't hit me with it later when I'm trying to enjoy myself. My cousin, god rest him, facetiously called handicapped parking "roundbutt parking," because he hated the utilitarianism of the International Accessibility Logo, so I usually combine two jokes in one... "Yeah, hang out with me and you get the roundbutt parking." New people are usually so freaked out by my flippancy combined with the fact that I just stole their joke that they go "haha! Yeah..." and change the subject, which is just how I like it.
You have my utmost sympathy re: having to wait for your hip to go, btw. I'm waiting on my shoulder to finally bite the dust before they'll replace it... it's an 8 on the pain scale on a good day, but I can also raise my arm about a foot off my lap, so no dice till I can't push my chair at all, essentially. It sucks.
Re: explaining what you have to doctors, oh yes. You wouldn't think that having one of the most common congenital disabilities on the planet would require that, but I've had this conversation many times:
Doctor: So what's your diagnosis?
Me: Spastic diplegic cerebral palsy.
Doctor: And how long have you had that?
Me:..... since birth.
Doctor: But how long have you had *symptoms*?
Me:.... it's congenital.
Doctor: No, I'm asking about *symptoms*.
Me: *sigh* since November 16, 1981.
Doctor: Okay. Wait, that's your birthday.
Me: Yes, because I have *congenital brain damage*.
Doctor: Brain damage? You seem to do very well for yourself...
Another one from the Cereal Box Top School of Medicine, I see!... so don't worry, it's not cause what you have is rare, cause mine's decidedly not and it makes little difference. There's a bottom 20% in every graduating class, including medical school.
vaping some Sweet Cherry Bomb now. It's pretty good stuff. Watching JFK's funeral and finishing up the herb butter. I'm a real party animal.
Nowadays when a doctor gets into all that I just show them the scars from the surgeries and my two-inch-thick medical file that I keep a copy of and ask them if they want to read it while I wait. They usually just give me what I want at that point and if they don't I find a doctor who will. I have no patience for dealing with doctors who want to push whatever medications the drug companies are paying them to and ordering tests that have already been done dozens of times already. I am not a fan of the medical industry and most doctors with a few exceptions. Occasionally I find a doctor who will listen or can be prodded into waking up out of his coma to see what's going on and those are the ones i stick with.
And I will never let an orthopedic surgeon near my back. Ever. Dealt with two of them for years and they were idiots. One told me to 'just live with it because there is nothing wrong. The MRI doesn't lie'. Took that same MRI to a neurosurgeon that was recommended to me and he took one look at it and said I had degenerative disc disease and he could help... and he did. The second neurosurgeon was also very good, he was just afraid I would die on the table because quad spinal fusions aren't done every day
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
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Didn't this used to be the mtbv thread?
I've been through about the last 10 pages and when there is a mention of mtbv it seems to be ignored for personal chit chat. I know this might be going against the grain and I'm sure you're all regs from reading a little of it but can some consideration be given to those of us who come to this thread looking for the info suggested to us by the thread title.
I don't find it helpful to have to go through pages and pages of unrelated conversion to find the odd post which is relevant.
Please don't take offence but perhaps those involved hadnt raised the impact it may have on others looking for info.
sent from mobile
I've been through about the last 10 pages and when there is a mention of mtbv it seems to be ignored for personal chit chat. I know this might be going against the grain and I'm sure you're all regs from reading a little of it but can some consideration be given to those of us who come to this thread looking for the info suggested to us by the thread title.
I don't find it helpful to have to go through pages and pages of unrelated conversion to find the odd post which is relevant.
Please don't take offence but perhaps those involved hadnt raised the impact it may have on others looking for info.
sent from mobile
What is it you want to know?
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
The waiting sucks so bad. Specify when the weather changes.
Your conversations with doctors sounds a lot like mine.
Doctor: so why are you here today?
Me: I just moved here and I need a doctor.
Doctor: ok. What's the problem?
Me: I have Charcot Marie Tooth disease.
Doctor: what's that.
Me: *20 min of explaining followed by explaining surgeries and ending with telling them to look up papers from U.C. Davis right after 1988/89*
Doctors are not used to being educated by patients I've noticed. My newest doctor is the first I've been to who has heard of what I have and actually listens and cares about his patients.
It drives me nuts when people try to "help" me. I know my limitations and when I need help I'll ask.
Morning comes early so it's time to refill my Butterscotch and go to sleep. Night all.
Your conversations with doctors sounds a lot like mine.
Doctor: so why are you here today?
Me: I just moved here and I need a doctor.
Doctor: ok. What's the problem?
Me: I have Charcot Marie Tooth disease.
Doctor: what's that.
Me: *20 min of explaining followed by explaining surgeries and ending with telling them to look up papers from U.C. Davis right after 1988/89*
Doctors are not used to being educated by patients I've noticed. My newest doctor is the first I've been to who has heard of what I have and actually listens and cares about his patients.
It drives me nuts when people try to "help" me. I know my limitations and when I need help I'll ask.
Morning comes early so it's time to refill my Butterscotch and go to sleep. Night all.
I think that's what led me to want to mess with those people a little bit... I figured I was entitled to a laugh before the inevitable "Oh my God, I didn't know, I'm so sorry, you don't look disabled, you look *great*!" As though a) being disabled is something to be sorry for, b) there is any such thing as "looking" disabled, or if it matters whether you do, and c) as though they need to emphasize that looking "normal" from the waist up is the be all end all of life.
I know that's not how anyone *means* that stuff. They just don't know *what* to say, so they say stupid things. But some days you can smell the pity and the Otherness (ooooh, they're not *like* us, those disabled folks!) coming, and you're just not up for it, you know? (That was rhetorical - I know you do.
I usually beat people to the punch with the "good parking" and the "line skipping" etc type jokes. It's dumb and I'm sick of doing it, but if I say it first, then they can't hit me with it later when I'm trying to enjoy myself. My cousin, god rest him, facetiously called handicapped parking "roundbutt parking," because he hated the utilitarianism of the International Accessibility Logo, so I usually combine two jokes in one... "Yeah, hang out with me and you get the roundbutt parking." New people are usually so freaked out by my flippancy combined with the fact that I just stole their joke that they go "haha! Yeah..." and change the subject, which is just how I like it.
You have my utmost sympathy re: having to wait for your hip to go, btw. I'm waiting on my shoulder to finally bite the dust before they'll replace it... it's an 8 on the pain scale on a good day, but I can also raise my arm about a foot off my lap, so no dice till I can't push my chair at all, essentially. It sucks.
Re: explaining what you have to doctors, oh yes. You wouldn't think that having one of the most common congenital disabilities on the planet would require that, but I've had this conversation many times:
Doctor: So what's your diagnosis?
Me: Spastic diplegic cerebral palsy.
Doctor: And how long have you had that?
Me:..... since birth.
Doctor: But how long have you had *symptoms*?
Me:.... it's congenital.
Doctor: No, I'm asking about *symptoms*.
Me: *sigh* since November 16, 1981.
Doctor: Okay. Wait, that's your birthday.
Me: Yes, because I have *congenital brain damage*.
Doctor: Brain damage? You seem to do very well for yourself...
Another one from the Cereal Box Top School of Medicine, I see!... so don't worry, it's not cause what you have is rare, cause mine's decidedly not and it makes little difference. There's a bottom 20% in every graduating class, including medical school.
Vaping some Sweet Cherry Bomb now. It's pretty good stuff. Watching JFK's funeral and finishing up the herb butter. I'm a real party animal.
Believe it or not, I have had old people glare at me *while* they watch me gimp my way into my chair, and/or tell me in a very resentful tone, "you're too young to be disabled." Like I got one over on them somehow. Gee, sorry, I didn't get the benefit of waiting to get old before life hit me with the gimpy stick, happened in utero, my bad. I'll file a complaint with the management. Oy.
Sadly, in the US, *anyone* in chronic pain is immediately considered a drug seeker. I suffered for five years in so much pain I couldn't open my jaw or roll over in bed (getting out of bed was impossible, and agonizing when someone lifted me from bed to my chair). Every doctor I saw agreed that I had severe rheumatoid arthritis, and that the RA was playing off the CP and making the pain worse, but they wouldn't put me on narcotics. The reason? "You're too young to be in *that* much pain." Oh, again, I'm sorry, I didn't realize there was an age threshold before pain was allowed.
Once they *finally* let loose of some vicodin and I got enough of that in my system to stop the vicious cycle, it turned out that I only need a tiny amount of vicodin to function, most days. (On really bad days, I take a tiny amount twice a day.) It takes the pain down from a billion to about a 7-8, but I can live with severe pain, I just can't live with *mindblowing* pain. And, of course, if anything ever happens to the doctor that I finally convinced to give me the vicodin, I'll have another years-long fight on my hands in order to get it back, because of course, I must be lying. My grandfather, on the other hand, who doesn't *need* pain meds and keeps begging his doctors *not* to prescribe any, has more narcotic prescriptions than he could fill in fifty years.
The people I know in the UK and Republic of Ireland are absolutely horrified at the way American doctors treat (or rather don't treat) chronic pain patients. As one of them said to me, "I can't believe you live in a country where it would be easier and cheaper for you to get your pain meds on the street than from a doctor." (And where do those street drugs come from? Primarily, older folks who don't need the meds and didn't ask for them, but do need some help paying the rent, because god knows their pension (if they're lucky enough to have one) doesn't cut it...)
Yup. On the bright side, I'm a human barometer!
If I were independently wealthy, I would put that on a billboard in every city in the country. The number of times people have tried to "help" without asking first, and ended up knocking me over/dumping me out of my chair... yikes.
I don't mind help (though, like you, I'll ask if help is truly necessary), but *unexpected* and *unannounced* help is *dangerous*. Ask first. I won't bite. I *will* appreciate the offer, even if I decline it. But I *won't* appreciate it if you leap in front of me without saying a word to do something I have completely handled, and in doing so, you accidentally cause me severe injury.
Cheaper and easier. I hear you. I am glad you have a doctor that will do that for you. My dad is the same way. Apparently you hit some magical age where they will just start throwing pain meds your way left and right even if you don't need them, but until then it is an uphill battle. I have a professor friend from New Zealand who lived here for ten years and could not get proper treatment for her issues. She ended up moving to Canada because they also apparently are a lot better about that. In some ways The United Statesjust isn't the 'dream' some people think it is. Not anymore anyway.
Sent from my Astromech in a galaxy far, far away. The force is with me. so is Mr. chicken.
I don't remember anyone ignoring any mention of MBV, or failing to help anyone who asked a question. If you have a question, ask it, we'll be happy to help.
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