Honestly, Pony, as one of those people with invisible disabilities who grew up getting "that look," I'm really, REALLY glad you felt comfortable and then did say something to that guy. People like him are the reason that, since the fourth grade, I have become an expert at making sure nobody sees me handle anything disability related. (I could write a book on all the different techniques I came up with to prevent people from finding out I was in Special Ed and saw a social worker in Junior High.) He needed to hear all of what you had to say.
In other news, I saw a new doctor instead of my old pediatrician last week. (I'm way too old for a pediatrician, but they're a lot more used to patients crying hysterically while they get shots than adult doctors, and generally more understanding towards the needle-phobic. Hence the late switch.) We talked about how I've recently just stopped digesting certain foods, which used to happen to me a lot as a kid but we never figured out why.
After hearing about my unexplained digestive issues, 'exercise induced asthma' diagnosis at the age of three, nose problems, and CF carrier status, she decided it was in my best interest to make sure I didn't have mild Cystic Fibrosis. So I took a sweat test today, just to rule it out. They rubbed some stuff on my arms, hooked up electrodes to it and weakly electrocuted my arms for seven minutes to induce sweating. Then strapped different things to my arms to collect it.
The test was pretty weird, but honestly the best experience I've ever had getting a medical procedure done in my entire life. Purely because I knew the test wasn't going to hurt going in, so I didn't have an anxiety attack before hand and didn't totally flip out and start crying/shaking immediately before it happened. And I made the lady administering the test laugh a bunch, which felt pretty good. Usually I'm the one stressing all the doctors out, so it was nice to make a medical professional happy for once.
So I'm going to focus on that while I wait to get the test results back.
I have a bad habit of cracking jokes when I'm nervous, and doctors' offices make me nervous because reasons, so I have on more than one occasion made medics laugh in the middle of drawing my blood. I don't recommend it.
Also, my latest VA tests showed my white blood cell count as low, probably because of the acetazolamide, so I'm going to take those to a private doctor rather than waiting six months to see the VA doc again.
My right shoulder's rotator cuff has been clicking and popping for years, mostly because it was my main shaker hand when I made martinis and such. Yesterday, my left shoulder's rotator cuff started aggravating the shit out of me, like ... I couldn't find the proper alignment to *pop* those ligaments back into place like I can with my right one.
I will say this: for a half-broken jarhead with serious damage to a majority of my connective tissue, I can still re-panel a horse barn with the best of them.
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knitdanIn ur baseKillin ur guysRegistered Userregular
"Shaking martinis"
“I was quick when I came in here, I’m twice as quick now”
-Indiana Solo, runner of blades
Honestly, Pony, as one of those people with invisible disabilities who grew up getting "that look," I'm really, REALLY glad you felt comfortable and then did say something to that guy. People like him are the reason that, since the fourth grade, I have become an expert at making sure nobody sees me handle anything disability related. (I could write a book on all the different techniques I came up with to prevent people from finding out I was in Special Ed and saw a social worker in Junior High.) He needed to hear all of what you had to say.
I've come to understand that ain't everybody got it in em to be the bigger asshole, so to speak. Everybody has their own reasons for not speaking up and being confrontational. Sometimes it's their own anxieties, sometimes it's the fear that they won't be heard or that what they will say won't make a difference. Sometimes it's a fear for their own safety or well-being or reputation, that if they say something things will get worse for them. So people have their reasons why they are conflict-averse, and I understand that and I'm sympathetic to that. Ain't nobody got a fight a battle they don't choose, and they have their own reasons for making that choice.
But those reasons rarely apply to me, and that's a privilege I got. So for me, I gotta have a damn good reason not to pick the fight, because someone ought to and if it ain't gonna be me there's a fair chance it ain't gonna be nobody else. There's times I don't, times I let it slide, but those are times I consider basically the whole person a fuckin' write-off as a human being and I think I have zero chance of making an impact on what they think or will do in the future, or that I just do not have the time and/or energy to devote to dealing with that shit at this present time. Anything less than that, I don't especially care about making things awkward or hostile or whatever in most circumstances unless I have a legit concern for like, my safety or getting fuckin' fired or something (and even the latter case is iffy because if I felt I was at risk of getting axed in a way that'd be illegal that'd become some hardcore brinkmanship unless losing my job would make me destitute).
It ain't always gotta be a weapons-grade response like I did with that dude, if it's just like someone saying or doing something blithe and ignorant and their potential to actually harm someone with that blitheness is limited, it'll be a much more moderate "Hey man, not cool, and this is why..."
I got so incensed with that guy mostly because of his position. As a lifeguard, he oughta know better, and indeed anyone with any kind of lifeguarding experience does (I'd be stunned if this wasn't his first summer at it), as others here have pointed out. If he had just been some schmuck there I'd have not said a thing (see: write-off policy), but with being in that position it not just caused a "not cool" response but also an angry one.
I take this kind of stuff super seriously, which is why I get involved in volunteering and disability advocacy groups and stuff like that.
When I was younger, I didn't confront other students because being an identifiable "special ed" student in school meant you got treated like a pet instead of a person, which terrified me. So I'd be confrontational with my teachers if they weren't following my IEP, and had no problem self-advocating. But I made absolutely sure none of my classmates had any idea I even had a learning disability.
Now I don't get confrontational because I'm really bad at it in social settings. I'm not good at thinking quickly on my feet, get too bogged down in small details, and then don't get listened to anyway because I look like a fourteen year old. So I wouldn't have been able to cut that guy off so quickly and really drive home the point the way you did.
But I would LOVE to be good enough at conflict to pick fights over disability issues. I've toyed with getting involved with an advocacy group for a couple of years, especially something education-related because the way public education deals with learning disabled students infuriates me.
But at this point I "pass" as abled so effectively that a lot of disabled people do not seem to want to recognize me as disabled. (Despite the fact that I am hypoglycemic, am extremely prone to heat stroke to the point where I've had to turn down jobs because of it, have anosmia, have a Learning Disability NOS, have Trichotillomania, and have a generalized anxiety disorder.) So I don't really feel welcome in the community. Like, I can't even slightly disagree with any aspect of the majority's opinions because I generally "pass."
When I was younger, I didn't confront other students because being an identifiable "special ed" student in school meant you got treated like a pet instead of a person, which terrified me. So I'd be confrontational with my teachers if they weren't following my IEP, and had no problem self-advocating. But I made absolutely sure none of my classmates had any idea I even had a learning disability.
Now I don't get confrontational because I'm really bad at it in social settings. I'm not good at thinking quickly on my feet, get too bogged down in small details, and then don't get listened to anyway because I look like a fourteen year old. So I wouldn't have been able to cut that guy off so quickly and really drive home the point the way you did.
But I would LOVE to be good enough at conflict to pick fights over disability issues. I've toyed with getting involved with an advocacy group for a couple of years, especially something education-related because the way public education deals with learning disabled students infuriates me.
But at this point I "pass" as abled so effectively that a lot of disabled people do not seem to want to recognize me as disabled. (Despite the fact that I am hypoglycemic, am extremely prone to heat stroke to the point where I've had to turn down jobs because of it, have anosmia, have a Learning Disability NOS, have Trichotillomania, and have a generalized anxiety disorder.) So I don't really feel welcome in the community. Like, I can't even slightly disagree with any aspect of the majority's opinions because I generally "pass."
I have found that while there are certainly outliers in the disabled advocacy/activism/volunteer community that are pricks towards those who are not visibly disabled or are otherwise able to "pass" as abled, I'd call them just that. Outliers. They're very rare to find among the actual people involved in volunteering, activism, and advocacy for real. Yes, you might see a fair chunk of them online, but that's because it's easy for people to be shitty online and a lot of the people who call themselves "activists" online restrict themselves to twitter hashtags and screaming at people to check their privilege over the most ridiculous things imaginable. They are in no way representative of the majority or even the reality.
I mean, I'm also someone who isn't visibly disabled, which is part of what led to that confrontation I talked about. I'm a big guy, and my whole life prior to becoming physically disabled has sorta been in a lot of ways been defined by my physical power and presence. I mean, when I got injured I was working as a nightclub bouncer, for christ's sake. So people, even other disabled people, do not look at me and see "disabled person". I don't move like I'm in pain (because I conceal it), I'm eloquent and clear-spoken (despite needing speech therapy for a brutal stammer and aphasia), and I come across as cheerful, engaging, and open with everyone (although I am bipolar, and have some form of non-autism neuro-atypicality thus far classified as "not otherwise specified" that actually makes me completely rubbish at what people consider a lot of basic social behavior).
So, I know what it's like to "pass", and I know what it's like to have people look at you and be like "Well, I mean, you're not really disabled. Not like, you know, other people." And even sometimes disabled people do that! But not usually. And not usually from people who are actually involved in advocacy and volunteering. Those people tend to be far more understanding and open-minded of the broad spectrum of disability and how invisible disability can be. I find that when you do get disabled people who sneer at the invisibly disabled, it is those who are deeply cynical about life in general and are really just looking for a way to bring down someone they perceive as having it "easier" than them. They don't feel that you or I have the "right" to call ourselves disabled because they don't think we have it as "hard" as they do. We suffer differently. It's not about worse, or better. It's not a contest. But they see it as people co-opting or appropriating something they suffer (in their mind) far worse for, and they get embittered about it.
It can become easy, when you run into that outlook ("you're not really disabled") from both disabled people and otherwise to internalize it and start to believe it, and that can dissuade you and make you feel unwelcome and make you feel like you don't belong or that you should just mind your own. I've been there, I know what that's like. I also came to realize that, again, those people are folks who have chosen to wallow in cynicism and self-pity, and tear people down instead of trying to lift everyone up.
The phrase for it is crab mentality, and it's awful, but not something I see in the activism community much. When you do see it, don't let it discourage you. Just ignore people like that, and move on.
I've gotten a fair amount of it in real life as well as online. Although admittedly most of the real life stuff happened in high school. (By the time I got to college I gave up trying to interact with disability groups.) But that's a very good way to think about those people. It's reassuring to know that they're in the minority.
I start classes again as a graduate student at large in a few weeks. Maybe I'll finally check out the school's disability awareness group.
i've done some more testing her eand i've discovered that if i ingest my prescribed dose of klonopin or slightly more and have a drink or two i can manually induce a hypomanic episode.
thats pretty dang cool and fascinating imo, because i mean, anyone anywhere can make themselves sad, but it takes a special kinda person (a bipolar person) to be able to push some buttons and make themselves BEAAAAAST MODE but also in love with everyone and everything
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knitdanIn ur baseKillin ur guysRegistered Userregular
Playing the tambourine during your year with the Hare Krishnas?
*sigh*
I'll give you points for creativity, but I'm still going to give this a thumbs down.
Not really your fault, I'm certain that the repetitive recycling of other, better jokes can be laid at the feet of Dane Cook and his flash-in-the-pan popularity. Whilst the man makes a living at it, I would admonish you to focus on your chosen profession and abandon this mad quest to become Knitdane Cook.
After dropping my mother off, I was strolling to the cafeteria when I heard a hospital alert for a code blue, and they gave his room number. Few more lines to write in his final chapter and I appreciate that he set it during a beautiful September friday.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
A few weeks ago, I helped move refrigerators around my house. Because I'm stubborn and stupid. So of course I totally fucked up my back. The pain has been bad but manageable, Aleve, Tylenol, and heating pads. I've only slept about 3 hours a day since but I've dealt with worse.
Monday I woke up screaming and delirious because my left hip felt like some knife had been shoved into the joint. I made it to work and by 11am my VP forced me to go get it looked at.
After a few of this and that generic fuckery, the Dr looks at my actual back and hip and says, "Huh... It uhh... Wow. You walked in here? Because these spasms are nearly dislocating your hip."
A few shots later it calms down and he asks me if I want to be admitted. No. I want to go home.
So, for the first time since I went clean almost ten years ago, I am sitting next to bottles of narcotics and opiates.
I am ok with this.
Bullshit. You kept a pair of pills just to test your ass for years and years. You like to test yourself because you know you are stronger.
Well, keep fighting the good fight. My new medicine isn't of the calibre of my old meds but it is apparently my only chance? I do believe he said that it was.
And holy pipes, one dose costs 30 grand. My triplicate dose could put a man through college.
I mainly just came it for the monthly "not dead" thing but man, get your hip in order. Walk it off.
You persist in not dying, and I persist in trying to get the energy to move. I can't metabolize for shit still. Doctors who don't bother asking questions keep throwing around narcotic bowel syndrom, but the irony is that the only time my system slows down enough for a really good meal is on enough narcotics. I have the gat damn opposite of NBS.
One day I will die, and that day will be when I outrun medicine and there is no immuno-suppresant that affects my bowels. Then I wait until it creeps up the spine and into the brain.
So how you doing, stale?
Humor can be dissected as a frog can, but dies in the process.
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Caulk Bite 6One of the multitude of Dans infesting this placeRegistered Userregular
Thirty thousand for one dose? Crap, and I thought two thousand for a month of injectable blood thinner was expensive (thank goodness for the disability drug plan).
Good to hear you're still kickin' munk,
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Yeah, my 'loading dose' was right around 100 grand.
ON THE GOOD NEWS FRONT (not for me, but a friend)
A friend of mine who could previously only drink liquids and digest them had a transplant and after a month of hospital for transplant then another month for infection, she is out and eating whatever the hell she wants. So good for her.
Humor can be dissected as a frog can, but dies in the process.
Hugs as always munkus, thank you for letting us know how you are.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
ANGELINA! @ANGELINA I have been waiting to hear from you.
I always get worried if I don't get some message from you from time to time. :< Big hugs!
Also, my friend has a few more horror stories about urologists. So keeping that streak alive, urologists suck a big one. Like not just one bad story, but a whole list of complaints.
Humor can be dissected as a frog can, but dies in the process.
I also have a history of super-serious migraines and cluster headaches, the symptoms of which are so absolutely brutal they can create a grey area here
and I also have a history of seizures and have a low seizure threshold due to the medication I take
so, it may actually not have been a stroke or TIA and might just be like, some horrifying atypical migraine poser
or something
in any case my wife is keeping an eye on me and i've taken the right meds and we're keeping an eye on my O2 and BP and if anything gets too cray cray we'll head to emerg
i will probably be okay in like 24 hours
my current self-diag based on my history is that this was a TIA, because i've had em officially diagnosed before and this feels exactly like one
but i ain't a doctor, so
i am meeting with a doctor on friday, my wife's taking notes of stuff, i'm going to be like "this is what happened tuesday" and let him make a call if i need a scan or something
I had a TIA at the end of 2012, which is what prompted my cardiologist to look and decide it was time to get my valve replaced. They're scary as hell, so know that I'm rooting for you Pony. Hope everything works out
I went to visit my grandma today. Fuck. They've decided to stop radiation. No idea of a prognosis at all but she's been in a lot of pain so her son really pushed to have the doctor manage her pain better. So now she's really heavily medicated for pain to the point where her eyes kept unfocusing and she asked me if she could "fill this out" tomorrow when I gave her a copy of our wedding invite. Maybe early morning would be a better time to go see her, I dunno, but seeing her the way she is right now was a huge shock. Jesus. A few weeks ago she was the best condition I've seen her in in years and now this
Goddamn, one of the guys I played Tuba with in the Spartan Marching Band, one of my best friends, a guy whose wife is 36 weeks pregnant and is pretty dang similar to me was in the ICU after having a heart attack today. His wife said he's doing fine now, but I'm torn between feeling bad for him, waiting for this to be a joke, and feeling like I have crosshairs lined up on me.
Take care of yourself, dude. The tides would get all fucked up without you.
On an unrelated note, I figured out it's my glasses and contacts that have been triggering my migraines for the last couple of months. This prescription is only like six months old, too. Stupid brain pressure.
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Caulk Bite 6One of the multitude of Dans infesting this placeRegistered Userregular
Looks like I'm in for an angiogram on Wednesday of next week.
Diagnosed with celiac for sure with a biopsy. Hopefully that'll help a lot with my psoriasis and stuff, but I'm sad about the bread. Was practicing sign language with my sister and had a really fast onset neural migraine that is not easing up even though I took a relpax and an ativan so even though it doesn't hurt I'm really disoriented and words are fucking hard to use right now. Like to the point where I almost don't know if I should go to the hospital? But I had a CT scan like in June and they said my brain looks great even though this happens semi-regularly like every few months? So I don't think I'm having TIA or anything. But apparently it's not that unusual to suffer from migraine without pain and with neural symptoms I don't know. I'm so stressed between my field work and my school and my grandma and my wedding I don't fuckin know what to do and sometimes I feel like it's overwhelming to the point that I should just quit entirely and sleep it off for like the next 100 years. Ugh I'm sorry that I am venting but nobody is home to keep me company right now and I'm kinda freaked out.
Apologies in advance for probably freakin out, getting totally embarrassed, and feeling like an idiot in like an hour. Or maybe being confusing because I can't use the right words
yo realtalk @cabsy if you want someone to talk to about this stuff
feel free to PM me
also we can talk over like Steam or Gtalk or something
because migraines, TIAs, atypical neurological shenanigans in general are unfortunately my jam
which speaking of
remember when i was saying i was vomiting earlier
yep
so that turned into a full blown cluster headache an hour ago, fuckin' bullshit
cluster headaches are a level of hell
i wouldn't wish them on Hitler
fortunately before i became completely incoherent with weeping and curling into a fetal ball from pain i managed to gobble some percocet and not vomit it back up so
yo realtalk cabsy if you want someone to talk to about this stuff
feel free to PM me
also we can talk over like Steam or Gtalk or something
because migraines, TIAs, atypical neurological shenanigans in general are unfortunately my jam
which speaking of
remember when i was saying i was vomiting earlier
yep
so that turned into a full blown cluster headache an hour ago, fuckin' bullshit
cluster headaches are a level of hell
i wouldn't wish them on Hitler
fortunately before i became completely incoherent with weeping and curling into a fetal ball from pain i managed to gobble some percocet and not vomit it back up so
i'm doing... okay?
for now
at least the next six or seven hours, anyway
after that, who knows!
I might! Like it's not so bad, I feel spoiled that I have minimal pain on day one of my migraines and day two is only if I bend quickly, change temperature fast, or rapidly change elevation but man fuck that first hour or so. I run through the full list of neural symptoms from blind spots to rainbow chains to moving numbness throughout one side, usually ending in my nose and throat, and then aphasia of varying levels. Sometimes it repeats 2-3 times before it finally subsides. People are so used to migraine = bad headache that when I have to explain migraine = I need to go home because I'm going to be completely incapable for at least an hour I feel like people don't believe me. And then feel like the biggest fake because it's only every few months and it doesn't hurt so much anymore and it's just more awkward and blah blah brain problems anxiety
Fuck brain problems both emotional and neurological, amen
Also it sucks but ask for suppositories in case of emergency, because when you get to that point you won't even care anymore about the awkwardness of sticking stuff in your butt as long as it stops the sobbing pain/heavy vomiting combo
Posts
In other news, I saw a new doctor instead of my old pediatrician last week. (I'm way too old for a pediatrician, but they're a lot more used to patients crying hysterically while they get shots than adult doctors, and generally more understanding towards the needle-phobic. Hence the late switch.) We talked about how I've recently just stopped digesting certain foods, which used to happen to me a lot as a kid but we never figured out why.
After hearing about my unexplained digestive issues, 'exercise induced asthma' diagnosis at the age of three, nose problems, and CF carrier status, she decided it was in my best interest to make sure I didn't have mild Cystic Fibrosis. So I took a sweat test today, just to rule it out. They rubbed some stuff on my arms, hooked up electrodes to it and weakly electrocuted my arms for seven minutes to induce sweating. Then strapped different things to my arms to collect it.
The test was pretty weird, but honestly the best experience I've ever had getting a medical procedure done in my entire life. Purely because I knew the test wasn't going to hurt going in, so I didn't have an anxiety attack before hand and didn't totally flip out and start crying/shaking immediately before it happened. And I made the lady administering the test laugh a bunch, which felt pretty good. Usually I'm the one stressing all the doctors out, so it was nice to make a medical professional happy for once.
So I'm going to focus on that while I wait to get the test results back.
Also, my latest VA tests showed my white blood cell count as low, probably because of the acetazolamide, so I'm going to take those to a private doctor rather than waiting six months to see the VA doc again.
I will say this: for a half-broken jarhead with serious damage to a majority of my connective tissue, I can still re-panel a horse barn with the best of them.
-Indiana Solo, runner of blades
I've come to understand that ain't everybody got it in em to be the bigger asshole, so to speak. Everybody has their own reasons for not speaking up and being confrontational. Sometimes it's their own anxieties, sometimes it's the fear that they won't be heard or that what they will say won't make a difference. Sometimes it's a fear for their own safety or well-being or reputation, that if they say something things will get worse for them. So people have their reasons why they are conflict-averse, and I understand that and I'm sympathetic to that. Ain't nobody got a fight a battle they don't choose, and they have their own reasons for making that choice.
But those reasons rarely apply to me, and that's a privilege I got. So for me, I gotta have a damn good reason not to pick the fight, because someone ought to and if it ain't gonna be me there's a fair chance it ain't gonna be nobody else. There's times I don't, times I let it slide, but those are times I consider basically the whole person a fuckin' write-off as a human being and I think I have zero chance of making an impact on what they think or will do in the future, or that I just do not have the time and/or energy to devote to dealing with that shit at this present time. Anything less than that, I don't especially care about making things awkward or hostile or whatever in most circumstances unless I have a legit concern for like, my safety or getting fuckin' fired or something (and even the latter case is iffy because if I felt I was at risk of getting axed in a way that'd be illegal that'd become some hardcore brinkmanship unless losing my job would make me destitute).
It ain't always gotta be a weapons-grade response like I did with that dude, if it's just like someone saying or doing something blithe and ignorant and their potential to actually harm someone with that blitheness is limited, it'll be a much more moderate "Hey man, not cool, and this is why..."
I got so incensed with that guy mostly because of his position. As a lifeguard, he oughta know better, and indeed anyone with any kind of lifeguarding experience does (I'd be stunned if this wasn't his first summer at it), as others here have pointed out. If he had just been some schmuck there I'd have not said a thing (see: write-off policy), but with being in that position it not just caused a "not cool" response but also an angry one.
I take this kind of stuff super seriously, which is why I get involved in volunteering and disability advocacy groups and stuff like that.
Now I don't get confrontational because I'm really bad at it in social settings. I'm not good at thinking quickly on my feet, get too bogged down in small details, and then don't get listened to anyway because I look like a fourteen year old. So I wouldn't have been able to cut that guy off so quickly and really drive home the point the way you did.
But I would LOVE to be good enough at conflict to pick fights over disability issues. I've toyed with getting involved with an advocacy group for a couple of years, especially something education-related because the way public education deals with learning disabled students infuriates me.
But at this point I "pass" as abled so effectively that a lot of disabled people do not seem to want to recognize me as disabled. (Despite the fact that I am hypoglycemic, am extremely prone to heat stroke to the point where I've had to turn down jobs because of it, have anosmia, have a Learning Disability NOS, have Trichotillomania, and have a generalized anxiety disorder.) So I don't really feel welcome in the community. Like, I can't even slightly disagree with any aspect of the majority's opinions because I generally "pass."
I have found that while there are certainly outliers in the disabled advocacy/activism/volunteer community that are pricks towards those who are not visibly disabled or are otherwise able to "pass" as abled, I'd call them just that. Outliers. They're very rare to find among the actual people involved in volunteering, activism, and advocacy for real. Yes, you might see a fair chunk of them online, but that's because it's easy for people to be shitty online and a lot of the people who call themselves "activists" online restrict themselves to twitter hashtags and screaming at people to check their privilege over the most ridiculous things imaginable. They are in no way representative of the majority or even the reality.
I mean, I'm also someone who isn't visibly disabled, which is part of what led to that confrontation I talked about. I'm a big guy, and my whole life prior to becoming physically disabled has sorta been in a lot of ways been defined by my physical power and presence. I mean, when I got injured I was working as a nightclub bouncer, for christ's sake. So people, even other disabled people, do not look at me and see "disabled person". I don't move like I'm in pain (because I conceal it), I'm eloquent and clear-spoken (despite needing speech therapy for a brutal stammer and aphasia), and I come across as cheerful, engaging, and open with everyone (although I am bipolar, and have some form of non-autism neuro-atypicality thus far classified as "not otherwise specified" that actually makes me completely rubbish at what people consider a lot of basic social behavior).
So, I know what it's like to "pass", and I know what it's like to have people look at you and be like "Well, I mean, you're not really disabled. Not like, you know, other people." And even sometimes disabled people do that! But not usually. And not usually from people who are actually involved in advocacy and volunteering. Those people tend to be far more understanding and open-minded of the broad spectrum of disability and how invisible disability can be. I find that when you do get disabled people who sneer at the invisibly disabled, it is those who are deeply cynical about life in general and are really just looking for a way to bring down someone they perceive as having it "easier" than them. They don't feel that you or I have the "right" to call ourselves disabled because they don't think we have it as "hard" as they do. We suffer differently. It's not about worse, or better. It's not a contest. But they see it as people co-opting or appropriating something they suffer (in their mind) far worse for, and they get embittered about it.
It can become easy, when you run into that outlook ("you're not really disabled") from both disabled people and otherwise to internalize it and start to believe it, and that can dissuade you and make you feel unwelcome and make you feel like you don't belong or that you should just mind your own. I've been there, I know what that's like. I also came to realize that, again, those people are folks who have chosen to wallow in cynicism and self-pity, and tear people down instead of trying to lift everyone up.
The phrase for it is crab mentality, and it's awful, but not something I see in the activism community much. When you do see it, don't let it discourage you. Just ignore people like that, and move on.
I start classes again as a graduate student at large in a few weeks. Maybe I'll finally check out the school's disability awareness group.
Oh look, it's the same lame joke all over again.
You can do better than that.
thats pretty dang cool and fascinating imo, because i mean, anyone anywhere can make themselves sad, but it takes a special kinda person (a bipolar person) to be able to push some buttons and make themselves BEAAAAAST MODE but also in love with everyone and everything
Playing the tambourine during your year with the Hare Krishnas?
-Indiana Solo, runner of blades
*sigh*
I'll give you points for creativity, but I'm still going to give this a thumbs down.
Not really your fault, I'm certain that the repetitive recycling of other, better jokes can be laid at the feet of Dane Cook and his flash-in-the-pan popularity. Whilst the man makes a living at it, I would admonish you to focus on your chosen profession and abandon this mad quest to become Knitdane Cook.
One is more than enough.
http://www.fallout3nexus.com/downloads/file.php?id=16534
Is the voice that says hold it in and stay strong the selfish demon inside or is it the one saying let it out and ask for help?
I've got no attachments to share this with, so as Jubal Early said, "Here I am."
http://www.fallout3nexus.com/downloads/file.php?id=16534
Bullshit. You kept a pair of pills just to test your ass for years and years. You like to test yourself because you know you are stronger.
Well, keep fighting the good fight. My new medicine isn't of the calibre of my old meds but it is apparently my only chance? I do believe he said that it was.
And holy pipes, one dose costs 30 grand. My triplicate dose could put a man through college.
I mainly just came it for the monthly "not dead" thing but man, get your hip in order. Walk it off.
You persist in not dying, and I persist in trying to get the energy to move. I can't metabolize for shit still. Doctors who don't bother asking questions keep throwing around narcotic bowel syndrom, but the irony is that the only time my system slows down enough for a really good meal is on enough narcotics. I have the gat damn opposite of NBS.
One day I will die, and that day will be when I outrun medicine and there is no immuno-suppresant that affects my bowels. Then I wait until it creeps up the spine and into the brain.
So how you doing, stale?
Good to hear you're still kickin' munk,
ON THE GOOD NEWS FRONT (not for me, but a friend)
A friend of mine who could previously only drink liquids and digest them had a transplant and after a month of hospital for transplant then another month for infection, she is out and eating whatever the hell she wants. So good for her.
keep on keepin on, munkus.
I always get worried if I don't get some message from you from time to time. :< Big hugs!
Also, my friend has a few more horror stories about urologists. So keeping that streak alive, urologists suck a big one. Like not just one bad story, but a whole list of complaints.
i am all kinds of fucked up today because of it
Are you able to see a doctor soon?
-Indiana Solo, runner of blades
friday
got an appointment with a potential new regular GP, dude is currently my mother in law's GP and i got in that way
I also have a history of super-serious migraines and cluster headaches, the symptoms of which are so absolutely brutal they can create a grey area here
and I also have a history of seizures and have a low seizure threshold due to the medication I take
so, it may actually not have been a stroke or TIA and might just be like, some horrifying atypical migraine poser
or something
in any case my wife is keeping an eye on me and i've taken the right meds and we're keeping an eye on my O2 and BP and if anything gets too cray cray we'll head to emerg
i will probably be okay in like 24 hours
my current self-diag based on my history is that this was a TIA, because i've had em officially diagnosed before and this feels exactly like one
but i ain't a doctor, so
i am meeting with a doctor on friday, my wife's taking notes of stuff, i'm going to be like "this is what happened tuesday" and let him make a call if i need a scan or something
So we still don't know what's wrong with me digestive system/sinus wise. But I don't have CF.
On an unrelated note, I figured out it's my glasses and contacts that have been triggering my migraines for the last couple of months. This prescription is only like six months old, too. Stupid brain pressure.
came back from my aquatic physio
felt really good
then i threw up in the bathroom and passed out on the floor
hrm
good thing i am seeing the doctor tomorrow, huh
clearly
Apologies in advance for probably freakin out, getting totally embarrassed, and feeling like an idiot in like an hour. Or maybe being confusing because I can't use the right words
feel free to PM me
also we can talk over like Steam or Gtalk or something
because migraines, TIAs, atypical neurological shenanigans in general are unfortunately my jam
which speaking of
remember when i was saying i was vomiting earlier
yep
so that turned into a full blown cluster headache an hour ago, fuckin' bullshit
cluster headaches are a level of hell
i wouldn't wish them on Hitler
fortunately before i became completely incoherent with weeping and curling into a fetal ball from pain i managed to gobble some percocet and not vomit it back up so
i'm doing... okay?
for now
at least the next six or seven hours, anyway
after that, who knows!
I might! Like it's not so bad, I feel spoiled that I have minimal pain on day one of my migraines and day two is only if I bend quickly, change temperature fast, or rapidly change elevation but man fuck that first hour or so. I run through the full list of neural symptoms from blind spots to rainbow chains to moving numbness throughout one side, usually ending in my nose and throat, and then aphasia of varying levels. Sometimes it repeats 2-3 times before it finally subsides. People are so used to migraine = bad headache that when I have to explain migraine = I need to go home because I'm going to be completely incapable for at least an hour I feel like people don't believe me. And then feel like the biggest fake because it's only every few months and it doesn't hurt so much anymore and it's just more awkward and blah blah brain problems anxiety
Fuck brain problems both emotional and neurological, amen
Also it sucks but ask for suppositories in case of emergency, because when you get to that point you won't even care anymore about the awkwardness of sticking stuff in your butt as long as it stops the sobbing pain/heavy vomiting combo