Let them eat cake!
UT do not respond. Remember our promise to one another. I am sure the following will get me banned for the third or fourth time, but if I can't post my opinionand not even attack another member, ethnic group, or spamming the board, what's the point?
POEM
September 2004 was a very good year
It was good for the poor
And best of all for
Campbell’s
Chicken
Noodle
Soup.
Alas, that vintage cannot be found on the shelves
anymore.
But clever aficionados’’ have stored cans in their soup cellars.
I am told that the vintage will reach its peak in 2010
when the price is likely to reach 2 cents per can.
But despair not, American Entrepreneur!
You can go down to the food commodities center
You know:
that place for the cons, the mother’s of three living off the system, and the disabled
(who really are notdisabled, they just crossed some doctor’s palm with golden eagles).
And you can receive completely free of charge
Campbell’s 2004.
If you are lucky, you might come across some 1999-powdered milk (generic).
Why do we have the FDA?
To make sure those with money live and those without succumb to some odd disease
the rest of you call food poisoning.
Now, it being the holiday season and all,
I don’t wish to be greedy.
The first Mom who PM’s me with her shipping address,
I will mail her my can of 2004 Campbell’s
Chicken Noodle Soup
Vintage 2004.
I’m sure your children will love it.
Happy Holidays,
Marichiko
WTF are you going on about?
She got a free can of soup from the food bank, and she's pissed that it's from 2004.
So pissed that she's supposedly willing to pay several dollars shipping to make a point about the can of soup she supposedly couldn't afford to buy in the first place.
The food bank gave her food that was out of date?
'supposedly'? are you suggesting that it's all an act and she can actually afford the things she says she can't?
I rather liked the poem. I especially liked the way the name of the soup was staggered across several lines.
are you suggesting that it's all an act and she can actually afford the things she says she can't?
An act? No, I do think she truly believes she can't afford the things she says she can't.
It's the fault of the towing industry, they are crippling us...
Shine and I smoked a pork loin yesterday and the cryovac? shrinkwrap had a date of Oct. 2003. Which is nutts because I lost all in freezer in Katrina. WTF? It was great! BTW
Not a very good poem, if'n y'ask me.
I totally understand the marychicks POV. I have an illness that will require me to to take medication for the rest of my life (don't panic, it ain't that heavy) but the way the NHS is structured in the UK, and the way the european pharmiceuticals are structured, means that my medication frequentally comes from outside of the UK (made under EU license). Which i ok, mostly..... except now and again the packaging is a bit iffy, and the metered-dose delivery system does not seem to be quite as smooth operating or accurate as it could be. Still, I'm sure it saves the NHS a few pence here and there.
An act? No, I do think she truly believes she can't afford the things she says she can't.
Oh she
believes she can't afford those things. You think maybe she's terribly misguided about her disposable income then? You don't think maybe she just doesn't have very much money?
$671.00/mo plus $10.00 food stamps. No close family to help. No wealthy friends. Ibram, if you consider that a poetry critique, I hope for the sake of the world, you go into stock broking. I wrote a lot more, but I've been having computer problems and it all got erased. 12 per cent of the people in this country are in my situation.
I may explain or not, tomorrow. And to all a good night.
Dana, we've had this conversation a bajillion times before. I will lay this out for you once, and then I'm done. I already regret that I even bothered to reply to this thread...
What one can "afford" is entirely subjective, it's all about what one chooses to spend one's money on. Compare the cost of the following items:
A single can of Campbell's soup - about $1.50
Shipping cost for that soup can in the domestic US - about $6.00
Dial-up internet service - about $10/month
A purebred puppy from a breeder - at least several hundred dollars
It is demonstrably false to say one can buy items 2, 3, and 4 (as mari has), but must rely on charity for item number 1 (as mari has). So yes, I do believe marichiko is, at best, "terribly misguided about her disposable income." I believe food banks should be reserved for people who are truly hungry, not people who waste their limited funds on other items. A homeless person may have one less meal now because mari, with her little cottage, working car, well-fed pets, and internet connection, chose to take advantage of a charity. However, I understand you are a socialist, so who knows what sort of a perspective you may take on who "deserves" the benefit of charities. It doesn't matter. The way mari lives her life has been the topic of conversation far too many times already. I wish I hadn't risen to the bait. Like I said, I'm done.
Hey, whats wrong with getting a can of soup from 2004?
Its in a can, right? Doesn't go off?
Dana, we've had this conversation a bajillion times before. I will lay this out for you once, and then I'm done. I already regret that I even bothered to reply to this thread...
What one can "afford" is entirely subjective, it's all about what one chooses to spend one's money on. Compare the cost of the following items:
A single can of Campbell's soup - about $1.50
Shipping cost for that soup can in the domestic US - about $6.00
Dial-up internet service - about $10/month
A purebred puppy from a breeder - at least several hundred dollars
It is demonstrably false to say one can buy items 2, 3, and 4 (as mari has), but must rely on charity for item number 1 (as mari has). So yes, I do believe marichiko is, at best, "terribly misguided about her disposable income." I believe food banks should be reserved for people who are truly hungry, not people who waste their limited funds on other items. A homeless person may have one less meal now because mari, with her little cottage, working car, well-fed pets, and internet connection, chose to take advantage of a charity. However, I understand you are a socialist, so who knows what sort of a perspective you may take on who "deserves" the benefit of charities. It doesn't matter. The way mari lives her life has been the topic of conversation far too many times already. I wish I hadn't risen to the bait. Like I said, I'm done.
A year ago when I bought the dog, I was allowed to earn $400.00 extra dollars per month by SSDI. It was part of my voc rehab process. I delivered phone book all over my mountain town in blizzards, and on weekends sold rose in bars (it sucked, but it got me some money). I wanted that dog because I was all alone and needed a companion to walk with me and bark if a meanie came to the door. The breeder let me make installment payments.
It wasn't easy in Colorado Springs, but easier than here. The ex-axmurderer essentially drove me out of towm by physically abusing me, and destroying my property - smashing whatever he could. He scared me to death and made me want to leave. I have always loved the Western Slope, so when an opening came up here, I took it. Unfortunately, I didn't realize that my food stamps would be cut from $130.00 to $10.00 and the nearest voc rehab and neurologist would be 200 miles away in Grand Junction. Durango has an ordanist that prevents rose vendors like me from coming in and selling. The phone books here are so teensie that they are mailed, not delivered. I want to work but I can't.
I now live in Southwestern Colorado. The nearest town with a pharmact and a real grocery store i16 miles away (32 round trip). The next nearest town where my doctor has his practice is 19 miles (38 round trip). Durango where I sometimes have to go for a specialist is 52 mile round trip. There is NO, repeat NO public transportation out here. My well fed pets subsist on dry cat and dog chow - about $4.50/month for my new cat, $9.00 for my dog.
Apt: $191.00
Pets: 13.50
car insurance 60.00
gas 100.00
cleaning supplies 20.00
personal supplies (shampoo, soap, deorderant, lotion for the dry air here)15.00
laundry (4 loads) 9.00
shoes, clothing from thrift shop 15.00
Internet (dial up) (how dare she? 19.99 (that crap about $10.00 s a lie. I checked)
Phone 20.00
Medicines $14.00
car maintenance $50 (varies)
debt for traffic ticket (didn't come to complete stop on deserted road) 250
Total debt $777.49 on an income of $671.00.
I'll take those two loaves of white bread, mold and all, marked Nov 13, diectly back to the food bank, Cloddfobble. Feel better now? And thanks for your promise to not answer.
I think giving out of date food to people on the edge of poverty is pitiful.
I think theres a difference between out of date and old.
Old food is not bad food. Spoiled food is bad food.
Hm. I thought this was going to be another thread about how astonishingly bad that Marie Antoinette movie was...
gawd,,,100 dollars on gas??
and your phone is cheap!
and you clean your house alot too!
I find you funny and agreeable Marichinko. I hope saying that dosn't get me hated, or shunned. I don't like to belonging to clicks and groups if it excludes others esp. on a message board so I don't mind saying so too much.:p
I guess that poverty is relative Here in the UK, there are few true paupers as we have several layers of safety nets to catch the majority (and yes, I know we have low-income families..... but how many are truly paupers?).
In the US, without the welfare and socialist infrastructure that we have here, it must be truly horrendous to be poor. Not only do you have the problem of finding food and shelter for yourself and thine, but you have to ward off the slingshots of the self-rightous. I am so glad I am not american.
I am so glad I am not american.
Here, here, me t-- Waaait a sec...
We have similar social services here Jay. It's why I'm always very glad to be Australian. Just in case...
I agree....but then again, I don't know if one can generalise across the whole of America. Isn't it different from state to state, as to what protection there is?
I know Mari has had a much harder time in her new home than she had in the last place she lived.
What is your profession marichiko?
What is your profession marichiko?
Well DUH! She said she is disabled. If she COULD be doing what she used to do to make a living, this thread would not be here.
Eat cake? I got a can of apple pie filling out today, both ends were bulging out. Date was 10/?/ 06. Out the door carefully. I find that pineapple is the worst about storage?
Alright then, I'll be more specific. What did you do before becoming disabled mari? I'm assuming this was an injury or illness of some type, I never caught any details.
gawd,,,100 dollars on gas??
and your phone is cheap!
and you clean your house alot too!
I find you funny and agreeable Marichinko. I hope saying that dosn't get me hated, or shunned. I don't like to belonging to clicks and groups if it excludes others esp. on a message board so I don't mind saying so too much.:p
My keyboard shorted out in the middle of this, so I couldn't reply. I guess it was some electrical thingie, cuz when I finally got mad and gave it a sharp wrap on the desk, it began to work for now. A kind friend is also sending me a spare she has.
$100 IN GAS:
I live in a very small town that does not have a pharmacy, it has an expensive Mom and Pop grocery that charges twice what a regular grocery store does. My doctor is 19 miles away in one of the next towns. My specialists are 27 miles away in Durango. If I need hospital testing I have to go to Cortez, 16 miles. I also go their for groceries and thrift shop excursions. I try to do all my errands at once, but you know how that goes.
Two trips to doctor = 76 miles
Five or 6 trips to Cortez = 192 miles
four trips to Durango = 216 miles
Total: 484 miles @ $3.20/gal (its finally going down), my car gets maybe 20 miles to the gallon = 77.44, and then there's always some stupid trip to social services or the commodities place that brings my mileage higher. I'd say my gas estimate is pretty reasonable.
AND YOUR PHONE IS CHEAP
Glad to hear it, I'm stil paying off my installment fees on time, so its more like $35 or so at the moment, but it should go down to around $22 or $23 some day. That's plain phone service, no voice mail, no caller ID, no call waiting, no long distance or any other of those frills.
AND YOU CLEAN YOUR HOUSE A LOT, TOO
The HA makes surprise visits and expects the apartments to be spotless. I buy generic, $2.99 laundry soap, 1.99 fabric softener, $1.29 dish soap, $4.00 vacumn cleaner bags, those cheap garbage bags that rip and still cost $4.00/box. I buy 99 cent ajax type cleanser for the sinks. I buy generic pine sol for the floors -$3.00. Comes to about 18.26/month. Sorry I lied. I understand all about the economies of scale, but I can't afford to stock up on $20.00 boxes of Tide, etc.
I find you funny and agreeable Marichinko. I hope saying that dosn't get me hated, or shunned. I don't like to belonging to clicks and groups if it excludes others esp. on a message board so I don't mind saying so too much.:p
I like Mari too, and I don't consider myself a member of any clique.
I like Mari too. I also think she made a very valid point. Someone else made the point that there is a big difference between old food and out of date food, but in reality even food that's old but within its sell by date may be spoiled, if it's not been kept in the correct storage conditions.
I remember someone offering a bunch of food to my mum for the Refugee Council to use in their emergency food packs.....bless them for making the effort but it was pretty much all unusable. It was thrown away. Just because someone is on the breadline (or below it) doesn't mean they should 'be grateful' for food which may make them ill and which none of us would consider eating.
Thanks Dana and Rich. Every now and then I really lose my temper (a symptom of my neurological dificulties). They give me xanax to take as needed, but sometimes, I'll post before the stuff kicks in.
I don't mean to whine "poor me." Its the the thousands and thousands of other folks in this country who live in exactly the same conditions I do - even far worse.
9th engineer if you're that interested, PM me. It involves a lot of brain chemistry and neurological stuff, so your eyes may glaze over. Warning you in advance!
This Holiday season, just remember those less fortunate with something better than a can of 3 year old creamed corn. A little boy or girl somewhere will thank you for it!
PS And Busterb, I depend on a lot of smoked/frozen meat, too, given to me by a kind neighbor with a ranch.
Do you have programs over there for giving to less fortunate people at this time of year (outside the usual charities etc)?
Over here Kmart has a wishing tree where you can put a new present for kids who otherwise wont have a present at christmas time. you just put a lable on it saying what age boy or girl it should go to. I think it's a lovely idea.
Sounds like it's time for you to get another reporter to do a story on you so you can live off the donations like the last time.
Gosh, I've been having endless computer woes. I sent a reply that I thought got posted, but it didn't.
Let's try again. My heartfelt thanks to those who understand. I really didn't mean to go on a "poor me" crying jag, but one of my symptoms is sudden bouts of anger that seem to come out of nowhere. They give me xanax for this, but sometimes I kick in before the xanax do.
Anyhow, what disturbs me is not just my own situation, but the plight of the poor and disabled in the US, in general. 12% below the poverty line - incredible for a wealthy country such as ours. Since I am forced to sit in a lot of clinics for the poor, food stamp offices, etc., I see and hear things that simply break my heart. I want so much to help, but I can't.
9th Engineer, if you are interested in a medical synopsis of my condition. pm me; but be aware that you'l be reading through a lot of medical stuff until your eyes glaze over.
Busterb, I eat a lot of smoked and frozen meat, too. A kindly rancher in the area drops off packs of meat for me every now and then.
To everyone: There really are people in this country who are poor thru no fault of their own. Instead of a 4 year old can of creamed corn, why not go down to the local food bank this month and donate fresh milk, butter, fresh bread, fresh fruit and vegetables, or 20 inexpensive stuffed animals for the little kids who come down with their parents.
May God bless each and everyone!
Sounds like it's time for you to get another reporter to do a story on you so you can live off the donations like the last time.
I am having lots of computer wierdness as I mentioned above. This reply may or may not go through. If it doesn't, I won't try reposting it. You're a tough girl, Wolf, so here you go:
I take it then, that you have studied the work being carried out at the University of California by of John Edmond, PhD. Just which part of his hypothesis do you object to? The part where he identifies oxidative stress as the cellular injury caused by chronic mild carbon monoxide exposure? Or where he hypothesizes, accompanying conditions may include carbon monoxide acting as a rogue neuro-modulator perturbing carbon monoxide-like regulatory processes that are involved in cell signaling?
Surely, you agree with Ellenhorn and Barceloux writing in the peer reviewed monograph, Medical Toxicology - Diagnosis and Treatment of Human Poisoning. New York, NY: Elsevier Science Publishing Co., Inc. 1988., p. 823]
Severe carbon monoxide poisoning produces anatomic changes (e.g., cerebral edema, hemorrhagic focal necrosis, venodilation, petechiae, perivascular infarct). Bilateral necrosis of the globus pallidus is the characteristic lesion of carbon monoxide toxicity. Other vulnerable areas of the cerebral gray matter include the substantia nigra, hippocampus, cerebral cortex, and cerebellum. These histopathological changes are indistinguishable from other causes such as hypoxia, cardiorespiratory arrest, hypoglycemia, and cyanide poisoning. Rarely, a postanoxic demyelination occurs that follows an initial recovery and progresses to irritability, confusion, coma and death. A 'moth-eaten' appearance characterizes this anoxic leukoencephalopathy in which most of the damage appears in the gray matter of the cerebral cortex, pallidum, thalamus, and cerebellar cortex.
I suggest you get a copy. It’s a real page-turner.
Here’s some more from the above two scientists writing in the same monograph as above:
Neurologic sequelae include visual loss, dementia, retardation, constructional apraxia, temporospacial disorientation, memory loss, dysphasia, personality changes, concentration deficits, and frank psychosis. Parkinson's disease does occur after acute carbon monoxide exposures but is very rare. After initial recovery from carbon monoxide exposure patients may develop neurologic symptoms (apathy, mutism, amnesia, urinary incontinence, headache, irritability, personality changes, confusion, memory loss, visual changes) within 2 to 4 weeks of exposure.
I could go on and on, but I’m sure you studied all this stuff in your cartography 101 class years, ago.
Note that the neurological sequelae (that means after effects) INCLUDE the symptoms above, but never in the literature that I have researched, have I found a patient exhibiting every one of these symptoms all at once. CO exposure seldom impact’s one’s long-term memory – not very severely, anyhow. Nor does it necessarily impact their over-all intelligence – although mine has dropped to my dismay.
I can read a scientific paper (taking notes all the while) because I have a BA and a Master’s degree in biology. While you were writing papers on contour mapping and urban geography, I was studying mitochondria, synapses, embryology, chemistry, and physics. I still have that knowledge even though I don’t know what day of the week it is, get lost going places I’ve been 10 times before, forget faces, have severe panic attacks, and can get irritable as hell out of nowhere. These things make it damn hard to hold down a job no matter how smart or stupid you may be.
Now, if it is your scientific hypothesis that I gave up work I loved that paid decent money, and decided to be homeless for a while and then live a life of terror on how I’m going to survive on the SSDI I paid into for 30 years; I suggest you check yourself into your own institution for thorough testing. Don’t forget the neuropych eval.
Sounds like it's time for you to get another reporter to do a story on you so you can live off the donations like the last time.
Wow. That's about as heartless as it gets. IF Mari did benefit from donations as a result of a story, then good! I can't think of many people on this Cellar more deserving of a little good fortune. Do you say that to al the people who have benefitted from donations as a result of newspaper stories? Maybe the little boy in my ward whose parents had to raise money for stem cell treatment? Newspapers covered it, people ran marathons for him.....people donated sums of money. How mercenary of him and his parents to use the media for their own gain.
Mari, don't let shit like that get to you. I don't know if you did benefit from donations, but I hope you did. Plenty of people get press coverage and get paid who don't need/deserve that payday.
Wow. That's about as heartless as it gets. IF Mari did benefit from donations as a result of a story, then good!
Wolf enjoys goading me into responding to her. If I lose my temper, she wins. About the only person around I know who can read my response to Wolf and understand it is Labrat. Wolf is not a neurologist, and she certainly didn't write her thesis on the sequelae of chronic CO poisoning. This doesn't stop her from taking jabs at me and running like a bully on a playground.
I did get some donations from the people who read the story. That money helped me survive the last few months until my SSDI came through.
I had approached the newspaper 6 months before because I was furious that Colorado had cut its stipend to the Needy And Disabled (AND) to a mere $130.00/month. In the US it can take months, even years for the Feds to approve an SSDI application. In the interim, all the needy disabled have to live off is $130/month (think they may have upped that slightly by now).
I wanted to write the story of what the Colorado State Legislature was doing to the disabled of the state, and how many were dying for lack of medical care, food, and shelter.
The reporter liked the idea of the story, but she wanted to write the story herself, using me as the focal point. I am a very private person and I did not want my life splashed all over the paper. So, I refused.
After I lost my home, I went through 6 months of hell and met many people in the same predicament as me or worse. I decided that if telling my story would raise public awareness in Colorado Springs about what was really going on in this state, I needed to tell it. I went into that reporter's office shaking, and asked, "do you still want to do that story?"
So maybe Wolf is right. Its time for another newspaper story. Maybe this time in the Denver Post.
Instead of a 4 year old can of creamed corn, why not go down to the local food bank this month and donate fresh milk, butter, fresh bread, fresh fruit and vegetables, or 20 inexpensive stuffed animals for the little kids who come down with their parents.
I really wish our local food banks would
take fresh foods like the ones you suggest - they always specify non-perishables. I've always felt bad giving canned goods and nothing else. I don't know if it's liability fears (i.e. giving some sour milk or something else 'off' that could make someone sick) that lead the food banks to do this; probably something like that. Our parish got around that by offering a regular food bank to about 200 families who subscribe (we advertised the thing, thought it would take a couple of weeks to fill the spots and were filled in a day or two). They come on specific days to collect their groceries, and that way we can have fresh foods that aren't past their dates.
mari, when your SSDI did come through, how much did you get, lump sum? For some reason I'm thinking 23,000$ American; could be wrong, though. the fact that you allowed a man to manipulate you out of that money is no one's fault but your own. Myself, I've never had more than 6,000$ at one time.
Via your own logic, it is up to the average tax-payer to come through for you despite your hideous mistakes via personal relationships: Ok. Obviously, those tax-payers did just that by sending you cash donations. Good for them.
The fact that you are very intelligent and literate and articulate makes me think two things: #1) you are better off, educationally and socially, than the average American worker; and #2) you could, if you wanted, get off the dole very, very easily with virtually no tax on your current brain condition. Can't recall what day it is? Hire someone for 20.00/day to remind you. Even better-get a watch that tells the time/date/moon phase. Can't figure out the right route to take? get a cab; make those who hire you for your expert knowledge pay for it OR, get a GPS or similar. With all of your expertise and knowledge, it's kind of a slap in the face to those who need you that you don't work to the very best of your ability.
You COULD be productive if you wished. But, you don't wish.
I'm sorry things are so hideous for you. Perhaps you could make things better by applying all that logic and vocabulary AND ability to changing policy nation-wide.
I do know a thing or two about people on disability. Actually, more than a thing or two. I realize I am in Ohio, but Ohioans on disability enjoy so much more than you present...and I think (THINK--don't know) Colorado is richer than Ohio.
If Colorado is NOt RICHER than Ohio, I beg, on my disabled knees, for mercy.
Now, if it is your scientific hypothesis that I gave up work I loved that paid decent money...
What did you used to be able to do? I forgot/never knew.
Please don't insult the rest of the cellar, including Wolf, by implying I'm the only one who can use a medical dictionary. Thanks for posting that. I finally have a solid hypothesis regarding the cause of your holier than thou personality.
You used to have more interesting things to say. Now all I read is waa waa waa, poor me.
Too bad.
labrat, LOADS of disability claims are Psychiatric in nature. Methinks Mari has actual psych issues that she is unwilling to disclose. Fine--no law, no where, says she has to. It's her right to nondisclosure and privacy and I respect that. What I DON'T respect is her special pleadings. There are TONS and TONS more needy Americans than Mari. My objection is that she continually begs my purse and pocketbook....and moral fiber as well. If I was ONLY GOOD enough, I'd support Mari--coz I don't? I'm a horrid person.
I can't really make that jive.
Bri, ???
A person with a mental disabilty is due just as much as one with a physical one. Broke is broke. End of story.
I don't mind part of my earnings going into the pot to help those that need it due to disability. It might be me whose brain shorts out for good and I end up SOL.
What drives me cuckoo is Mari's fucking bitching and moaning about how bad she's got it. Puh-leese. Maybe it's her mental ilness that makes her this way, I don't know, or care. That's why, since I can't know, I ignore her posts for the most part.
I wasn't attacking you in any way shape or form.
BTW, my hypothesis was that her posts/stories are full of holes because her brain is. (see "moth-eaten") It was a bad joke, sorry.
I don't think this is a case of Mari bitching about how bad she has it....I think she is extrapolating out from her own experience and her own interaction with others in similar situations to suggest that a great many Americans are needlessly suffering hardship.
Thanks for posting that. I finally have a solid hypothesis regarding the cause of your holier than thou personality.
I don't see a holier than thou personality, I see somebody who has been goaded by nasty comments into making a dig back. We're all human.
mari, when your SSDI did come through, how much did you get, lump sum? For some reason I'm thinking 23,000$ American;
I doubt that. I could be wrong, but from what Mari's said to me in the past about entitlement, it wasn't at that sort of level.
As for her being able to be productive, I think Mari's pretty much covered why she can't hold down the kind of job that utilises her skills many times in the past. Her symptoms are the kind that would severely hamper her ability to maintain employment at anything beyond a fairly basic level; though i hope that her recovery to date gives an indication of further recovery to the point she would be able to resume such work.
Just because she is able to come on here and make a long post, don't extrapolate out from that that her symptoms aren't real and serious. Mari and I have talked this stuff through quite a lot on pm, the stuff she is dealing with is difficult and manifests in a range of symptoms which get in the way of keeping a job, and also make it virtually impossible to do the sort of work she is trained to do.
I am stunned at the lack of compassion being shown to someone who has had their career wrenched away from them and their life almost destroyed by an accident which has caused such severe neurological damage. That she can see this situation in terms not just of how it affects her, but how it relates to the plight of unemployed, severely disabled Americans generally, is testament to her strength of mind. That you see it just in terms of her whining is testament to your blinkered views on life.
Wolf, I expect that lack of compassion from, but Bri, I am surprised by.
What did you used to be able to do? I forgot/never knew.
I was at various times a medical librarian, science librarian/subject specialist for both the University of Idaho and Ft. Lewis College in Durango. I was head of Reference at a major public library in Colorado Springs, and I was acting director of the Helen Fowler Library at Denver Botanic Gardens. I finished up my illustrious career as a janitor.
Please don't insult the rest of the cellar, including Wolf, by implying I'm the only one who can use a medical dictionary. Thanks for posting that. I finally have a solid hypothesis regarding the cause of your holier than thou personality.
Please don't insult the men and women who have literally spent their entire adult lives both studying and doing science.
MITOCHONDRIA:
mi·to·chon·dri·on (mt-kndr-n)
n. pl. mi·to·chon·dri·a (-dr-)
A spherical or elongated organelle in the cytoplasm of nearly all eukaryotic cells, containing genetic material and many enzymes important for cell metabolism, including those responsible for the conversion of food to usable energy. It consists of two membranes: an outer smooth membrane and an inner membrane arranged to form cristae.
What's cristae? What's an eukaryotic cell? What's cytoplasm? Further, what is the evolutionary importance of the mitochrondria? Have cells always had mitochrondria? How do they convert food to usable energy?
Hell, what's the difference between a plant cell and an animal cell? I bow before a person of such intelligence as yours who can now throw these words around without ever having read Watson's Molecular Biology of the Gene, never studied the ground breaking work of Linus Pauling and, of course, never bent over a microscope, or never sat up all night memorizing those damned isomers and tautometers or the composition of the double helix. Hats off to every cellurite for being able to read the latest publications in Science with only a dictionary.
You used to have more interesting things to say. Now all I read is waa waa waa, poor me.
Too bad.
No, waa, waa poor 12% of Americans living below the poverty line, including many of the disabled. My life would be very different today if some damn scientist would have stuck his head out of the lab and said to me, "You need hyperbaric therapy, baby. You need medicines that we are now experimenting with for various types of brain injury - especially apoxia (go look it up). And while you're looking things up, look up Mary Sue Coleman. We need more scientists like her.
I could write you a horror story every week about the life of some OTHER disabled person living on SSI or SSDI if you want. I am more than willing to write those stories. I can think of 6 or 7 just off the top of my head right now - and me with memory problems!
If you, as a scientist cannot understand the points I am trying to make, then I can only believe you write out of personal bias - not science. I would be fascinated to read your hypothesis, a tentative assumption made in order to draw out and test its logical or empirical consequences.
I will even comply with a double blind study just for you. And me. If it will help me go back to work, I'll try anything.
And Bri, I have admitted to severe anxiety problems, problems controlling my temper, severe depression, etc. I wasn't this was way before. I am now.
And Bri, I don't want a penny from you. Make your charitable donations anywhere you wish except to me. In fact, send them to Bin Laden first. And if you'll recall, I helped YOU with some of your English Lit questions. My help wasn't anything special, according to you, but you kept PM-ing me with questions, and I kept doing my best to give you research ideas, etc. I never asked you for a damn thing in return except how your papers turned out, and you never even gave me so much as the courtesy of an answer. Then you'd PM me again over Rupert Brooke or some other ass-hole. Why didn't you ask your prof, instead?
Amitaba's Vow
"If after obtaining buddhahood, anyone in my land
gets tossed in jail on a vagrancy rap, may I
not attain highest, perfect enlightenment...
"If after obtaining Buddhahood, anyone in my land
loses a finger coupling box cars, may I
not attain highest perfect enlightenment...
"If after obtaining Buddhahood, anyone in my land
can't get a ridehitch-hiking all directions, may I
not obtain highest, perfect enlightenment..."
- From Burning, by Gary Snyder
Explicate THAT for me, Bri. And you thought Herrick was difficult.
Mari *smiles* take a breath hun. As someone wiser than I once said "Don't let the bastards grind you down".
You know what your problems are. Lots of people on the Cellar care and are interested, don't get wrapped up trying to explain yourself to people who never will, for whatever reason. You'll just end up upset and angry and for what? You won't change their minds and you won't 'win' the argument. The most you could do is upset someone else in return, and who knows what troubles they themselves are operating under.
pm me if you want to chat:P
... if some damn scientist would have stuck his head out of the lab and said to me, "You need hyperbaric therapy.
Did I miss something? Where does hyperbaric therapy apply? Or was it only uses as an example?
My life would be very different today if some damn scientist would have stuck his head out of the lab and said to me, "You need hyperbaric therapy, baby. You need medicines that we are now experimenting with for various types of brain injury - especially apoxia (go look it up).
Hyperbaric oxygen therapy has been used in cases of acute, moderate to severe carbon monoxide poisoning, since in at least one study it was shown to improve cognitive outcome at six weeks and twelve months. However, its role is still unclear due to conflicting study results and the flawed design of some studies that support its use. High-flow 100% oxygen may be just as effective. It isn't clear that the reference here, however, is to acute poisoning - sounds like chronic exposure ...??? There aren't any studies that I've been able to find that support hyperbaric O2 for that.
Apoxia - ?? That's not in my medical dictionaries. Anoxia, perhaps? Or hypoxia?
I'm really surprised at some of the responses here.
I suppose everyone gets to a stage where they feel they can't give any more. Maybe that's why some people have been so heartless. That's the only thing I can think of.
I'll share a story with you and hope it helps.
My best friend is very self absorbed. Everything is always about her. She hardly ever considers how her actions might affect someone else till after the fact, and then she cries tears of remorse. Begs for forgiveness and all that stuff.
On the other hand, she is the most generous and loving person you might hope to meet. Sure, she gets insecure sometimes and lashes out at the people around her. Accuses them of not loving her. Tells her husband she wants a divorce and that she's sick of him, accuses him of having affairs on her, then next week she's ready to start a family with him.
How do I feel about all this?
Sometimes it hurts. Sometimes I get really angry. Sometimes I don't feel very compassionate towards her at all. Sometimes I wish she was just 'normal'.
Unfortunately that's not an option for her. She has schizophrenia. She hears voices. She's vague sometimes. She lives in her own world half the time.
The medication she's on every day of her life keeps her straight most of the time, but she's still pretty flighty and hard work a lot of the time.
Do I feel like life would be easier without her? You bet it would be, but then I'd miss all the fun times we have together. I wouldn't have her to make me smile when I'm down, and I wouldn't know that no matter what, there's a friend in the world who will always be there for me, even if she is a bit crazy.
Some people need more patience than others for reasons that may not be of their own making.
What benefit is there in denigrating them?
Just shut the fuck up if you don't have something constructive to say. You don't know what their life is like.
I suspect that if Mari had suffered what she'd suffered, but was fortunate enough to have some sort of independant wealth and not be reliant on government assistance, the compassion levels would be much higher.
Edit: Okay, that was possibly a little harsh. Sometimes I lose faith in people when I am reading stuff like this. It makes me tetchy:P
Maybe so. I don't really know. Social services are a problem though. Throughout the world as far as I can tell. I remember when my mum was sick and I was caring for her full time which meant no work or study for me, I needed a carers allowance to pay the bills etc. I kept putting off going down to fill out the forms because i was so busy looking after Mum. The bills were piling up and when I did finally go down there, they told me they don't back pay that particular allowance. Mum died two weeks later.
It can be really hard sometimes. Looking from the outside people can never know what it's really like, and every case is different.
I agree. I know a lot of people who are struggling because of inadequate, over complicated or inflexible social services systems. I have a friend, who was given a pension from the army of about £350 a month, because of that he's been told he can't claim any other assistance, despite being unfit for work. He pays his council tax at the full rate, gets no help with his rent and gets no other reductions or benefits, not even free prescriptions, despite having to take a raft of medication on a daily basis.
There are others even worse off. I don't think any nation has quite got this right.
Ladies, why don't you go back a bit further in our archives here and find out how BRIANNA "got where she is today". It might make you wonder, as it does me, why she isn't more empathetic. And after that, ask yourselves why certain people here give Bri her regular doses of approval, support, and wisecracks while all they have for Mari is personal attacks and disparagement. If there is one, here is where you will see the underbelly of The Cellar. That's my opinion, anyway. We can still have opinions, can't we?
I suspect that if Mari had suffered what she'd suffered, but was fortunate enough to have some sort of independant wealth and not be reliant on government assistance, the compassion levels would be much higher.
As it happens, I am one of those people who was so fortunate. Because I had a rather sizable trust fund from my aunt, I survived. In addition to most of my inheritance being gone now, my treatment has cost the insurance companies and SS about a half million dollars over the last 12 years (and it should have been half that but medical care has risen totally beyond all reason). Last year, even with my checks for total disability, my income was minus $25,000. So needless to say, I do not have a problem listening to Mari's saga. And by watching the dynamics of this board whenever Mari's story comes up, I have learned a lot about some of the rest of you too. Now there are 3 more of you who I really like ;)
Ladies, why don't you go back a bit further in our archives here and find out how BRIANNA "got where she is today". It might make you wonder, as it does me, why she isn't more empathetic. And after that, ask yourselves why certain people here give Bri her regular doses of approval, support, and wisecracks while all they have for Mari is personal attacks and disparagement. If there is one, here is where you will see the underbelly of The Cellar.
That's something that's generally puzzled me for a couple of years.
It has been talked to death
before.
So? Mari posted a poem which highlighted an important issue regarding the substandard food being palmed off on those most in need. She knows about it because she is one of those people. But the post wasn't about her, it was a political poem ( I read it as such anyway) about the way those on the breadline are treated by society. The responses she got resparked the issues that have been talked to death. Maybe if people didn't respond in such a nasty way, it wouldn't devolve into a rehash of previous conversations....but when someone is attacked, there is an instinct to defend themself. And frankly, when someone is attacked, rounded on or treated unfairly again and again, some of us have an instinct to balance the picture.
My Mom is calling. Enjoy the game.
I read all the posts. edit: and found nothing to redeem anyone.
I still think the behaviour of some members on this thread is pretty disappointing, but I'm sure that's because I'm a bleeding heart liberal.
Thank christ for that is all I can say.
@ Griff. Well.....how nice for you....enjoy your conversation.
I still think the behaviour of some members on this thread is pretty disappointing, but I'm sure that's because I'm a bleeding heart liberal.
Thank christ for that is all I can say.
I'll echo that thanks:)
I'm not going to read back over more than 30 pages of posts (how long did this issue go on??) to find out things from before I really caught on to things around here, but it sounds like a vauge pattern is emerging again. Mari brings up an innocent enough topic and may have a good point (in this case it was substandard food being donated), but it manages to morph into something entirely different and almost always hostile about something directly or indirectly related to her.
Mari, I did PM you, check your messages. I'd at least like to know whatever background I can get before committing myself to any opinions.
I can see a second trend developing secondary to Mari's influence as well, but I'm going to watch a little longer and see how it develops.
with Danac and Ali on this one.
I have a RL friend in very much the same situation as the marichick, and like her, she is vilified and attacked whenever she posts on the boards (if your so poor, how come you can afford broadband etc...)
Keep your chin up, mari...... some of us do care.
The same situation? That's alot to judge from someone's text, communication over a board (even PMing) is never reliable. I see ALOT of holes in Mari's story and she's got some serious explaining to do to offset the fact that the math on her posts points to pathological scam artist rather than victim. That's what's sitting on the board, until I hear news that makes me reconsider I have no sympathy for this person.
(I've browsed a few more posts since last comment, that attitude is waning fast)
TBH, nineth placed, I can't remember acknowledging that I valued your opinon in this or indeed any other matter.
And I can't remember that ever having any effect on what I think and how I say it.
Did I miss something? Where does hyperbaric therapy apply? Or was it only uses as an example?
Hyperbaric therapy if administered in time can undo or even prevent further damage after carbon monoxide poisoning. Essentially, the CO binds preferentially with the hemoglobin in the blood which transports O2 throughout the body. Its like being suffocated from inside. Instead og getting a nice dose of O2, the cells of the body get a dose of deadly poison. The heart and brain require themost O2, so the damage is usually in these two organs. The parts of the brain that are standing at the end of the chow line, so to speak, suffer the most damage. That is why some parts of the brain can be severely impacted while others are relatively unharmed.
Hyberbaric therapy sort of super oxygenates the blood system and can save cells that might otherwise have died.
Orthodoc, sorry about the typo - I meant anoxia. My brain does that now - it creates new and amazing words. Sometimes I catch 'em and sometimes... Oh, well.
BTW, my hypothesis was that her posts/stories are full of holes because her brain is. (see "moth-eaten") It was a bad joke, sorry
LOL! I loved that! Its so damn true! My life has become as tattered as my moth eaten brain. Labrat, I'm sorry I got mad at you, I just get so tired of feeling the need to defend myself to people who have no idea and don't care what I'm talking about.
Dana, you're a dear! And so are you Aliantha, as well as that Cardigan guy.
9th, I'll PM you.
I did NOT want to get into this big fight, I was just fed up with the diet the poor are expected to live on in my county. I didn't mean to start WWIII.
Sure, I mention my life now and then. Everyone on the Cellar does from time to time. Consider me your correspondent from the other side of the looking glass - sometimes.
Now let's go write a poem about Labrat's ass. ;)
... She has schizophrenia. She hears voices. She's vague sometimes. She lives in her own world half the time...
Which is why, to this point I have never really paid much attention to Mari.
I think she's full of BS. Due to Co poisoning or not, I don't care and can't get inside her head to find out what the truth really is.
Keeping your friend in your life despite her problems is your choice Aliantha. I neither condemn or salute you. Ignoring Mari, and those I know like her IRL is mine. I prefer to surround myself with people who, depite the gravest of situations, try to look at the good things they still have going for them and focus on that.
I only have time/space in my life for so many people. I'd rather it be spent with positive ones. Am I a cold heartless bitch? That's for you to decide for yourself, and is entirely your opinion.
I only have time/space in my life for so many people. I'd rather it be spent with positive ones..
Hence the really positive post. ;)
1:1000, Not such a bad ratio, methinks.
But how many of those were of or about your ass? Hey, I'm just joshin' couldn't resist. :)
I'm really surprised at some of the responses here.
I suppose everyone gets to a stage where they feel they can't give any more. Maybe that's why some people have been so heartless. That's the only thing I can think of.
I'll share a story with you and hope it helps.
My best friend is very self absorbed. Everything is always about her. She hardly ever considers how her actions might affect someone else till after the fact, and then she cries tears of remorse. Begs for forgiveness and all that stuff.
On the other hand, she is the most generous and loving person you might hope to meet. Sure, she gets insecure sometimes and lashes out at the people around her. Accuses them of not loving her. Tells her husband she wants a divorce and that she's sick of him, accuses him of having affairs on her, then next week she's ready to start a family with him.
How do I feel about all this?
Sometimes it hurts. Sometimes I get really angry. Sometimes I don't feel very compassionate towards her at all. Sometimes I wish she was just 'normal'.
Unfortunately that's not an option for her. She has schizophrenia. She hears voices. She's vague sometimes. She lives in her own world half the time.
The medication she's on every day of her life keeps her straight most of the time, but she's still pretty flighty and hard work a lot of the time.
Do I feel like life would be easier without her? You bet it would be, but then I'd miss all the fun times we have together. I wouldn't have her to make me smile when I'm down, and I wouldn't know that no matter what, there's a friend in the world who will always be there for me, even if she is a bit crazy.
Some people need more patience than others for reasons that may not be of their own making.
What benefit is there in denigrating them?
Just shut the fuck up if you don't have something constructive to say. You don't know what their life is like.
I am never discussing anything to do with my situation again & asked that my thread be removed. The request was denied and I understand why... I'll just ignore it now. This will be my last post on the subject.
You cannot know another's pain, limitations or how those things interact with their immediate surroundings. Each state, town; even, neighborhood is different. What it is like to sit in a room alone with no contact with new people for five months may make you have a different opinion about the "importance" or "priority" that an Internet connection as you lose your mind from loneliness and pain.
Regardless, you just cannot know, and therefore are talking out of you ass if you throw that stone. If you don't like someone, fine, argue with them...
Other than that, let us have a thread about how each of us spends all of our money and then we can bitch about how much each of us spends on XXX and how much so-&-so does not give... bla, bla, bla... She comes to us, sometimes, because her life is hard, sure, some of that is her doing, guess what, all of our hardships are a tiny fraction of what the world does to us and the rest being how we respond to it...
Perhaps, so many jump on her because we see something of ourselves that we don't like and want to change... but it seems a lot easier to change it by trying to change someone else?
Sorry for the rant and I am not saying that I agree with all she has said and done, I am saying it is not my place to judge her so openly for it without a modicum of support as part of it (I try not to at all, but my expectations are not that high yet on this stage on my Path).
I care for you all, but I am going to take a break for a while talking about my situation.
Everyone here has a right to post whatever they want (within the mod's/owners consent, of course). I am not asking anyone to stop posting. In fact, I think that is a very BAD idea. In general, talking about your situation to anyone who will listen is extremely good therapy for someone in emotional or physical pain. How other than by posting/talking can we find others in our situation so that we can share ways of coping with that situation?
I just think Mari blows her conditions out of proportion, and I have chosen not to pay attention to her. It's not a matter of liking or disliking her. It's about trust. I just don't trust her stories.
Rkzenrage-I have read but not posted to your thread. I feel it would be an extreme waste to lose it, or for you to stop participating because it is a good resource for those of us who would like a view into what it is like for someone that has to go through what you are.
The same goes for anyone posting about any life situation, divorce, death, job loss, marriage, pregnancy, what have you.
Shit happens to all of us, self inflicted or not. What matters how you REACT to it.
I never questioned anyone's "rights".
I may have, personally questioned what was right.
There is no way for you to know how severe her condition is.
That is no different than the ignorant shits that say to me "you don't look sick".
:::giving up trying to explain myself:::
It's not a matter of liking or disliking her. It's about trust. I just don't trust her stories.
Over the years, I've slowly come to the same conclusion. I don't dislike Mari, but I tend to ignore her posts, especially about her personal life because there have been one too many that just seems a little too fantastic. I think it was around the time of the dynamite story that I decided to stop paying attention to her posts.
I am not posting to this thread, anymore. Like Griff said, "been there, done that, and tore up the T-shirt. Some folks here like me, some are indifferent, and some think I'm making up fairy tales. I feel the same about various members here. BFD.
I tried to make peace with you, Labrat, but you aren't having any of it. You write a bunch of unkind things and then talk about attitude. Interesting.
rkzenrage, I take a vacation from this place every so often, too. Do what's right for you. Frankly, I wouldn't mind erasing this entire thread of mine, myself.
Glatt, I can post the police call page from my town's little paper from the week in question of the great road flare/dynamite fiasco, but that's old news, too. I really am that stupid about explosives, and I thank you all for yelling at me and wising me up. Lucky the damn things were just road flares, anyhow.
Now, back to Labrat's ass.
PS: Brianna, your ideas were certainly useful - let's see:
Hire someone for 20.00/day to remind you. Even better-get a watch that tells the time/date/moon phase. Can't figure out the right route to take? get a cab; make those who hire you for your expert knowledge pay for it OR, get a GPS or similar. With all of your expertise and knowledge, it's kind of a slap in the face to those who need you that you don't work to the very best of your ability.
$20/day comes out to $600/month. I get $671.00, so I figured idea one was a joke.
Ummm... I did have a watch like that. I took it off to reach down in a crevice to get my fix a flat when I had a flat tire one day. I forgot about the watch and it now resides forlornly somewhere near Keyenta. Those watches cost $50.00 at least at Wal-mart. I don't have $50.00. Have you checked GPS prices these days? Obviously not.
As for not working to the best of my ability, how do you know what I'm trying to accomplish? I think that's an amusing statement coming from a former nurse who used to steal opiates from the hospital and now goes to school to get an English degree at tax payer expense, and whines about having to read Herrick and the like. You got off easy, girl, and you have NO right to point the finger at anyone else.
Over the years, I've slowly come to the same conclusion. I don't dislike Mari, but I tend to ignore her posts, especially about her personal life because there have been one too many that just seems a little too fantastic. I think it was around the time of the dynamite story that I decided to stop paying attention to her posts.
Like James Frey, Mari has a fiction addiction. I do sincerely empathize with addicts...however, when faced with irrefutable proof of the addiction I want an addict to come clean so real life can begin.
It's not that I am simply 'mean'--it's just that I don't buy it. At all. Money is tight/tight/tight? then don't take precious extra money to buy a pure-bred puppy and claim you needed companionship---Um, mongrels offer the same companionship, no? I could go on but I won't, it's fairly futile. But! i find it VERY interesting that mari did not (nor her familiar, tonchi) comment on my ideas for mari to live in "the real world"--they simply attacked me--no mention of the ideas. Classic. Classic Victim Mentality. I know mari has bread--if she wants to eat cake she should put forth some kind of effort--ANY effort at all would do.
[SIZE="7"][COLOR="Red"]hey...what are y'all talkin' about in here?[/COLOR][/SIZE]
This is why I am backing off. I don't want to see the day where things I cannot prove are subjected to this kind of scrutiny.
It is the bane of the disabled...
Like I said, we all hear it eventually... "you don't look sick".
This is why I am backing off. I don't want to see the day where things I cannot prove are subjected to this kind of scrutiny.
It is the bane of the disabled...
Like I said, we all hear it eventually... "you don't look sick".
truly, spare me. I've seen/known many people who are disabled--loads for psych reasons. Those folk can't put a sentence together despite meds and they are prone to hit innocent bystanders. Mari is intelligent, literate, articulate and able to use a computer. schizo's are rarely able to do this. Mari has never stated that she is in PAIN. she has said she cannot remember days, routes, faces (all things that could be helped) and she states she has been unable to learn new things--funny, after her diagnosis she learned ALL ABOUT CO poisoning...how else could she lecture us about said poisoning? she learned and incorporated that knowledge--not a thing poor mari has claimed she can do.
Just went to a shopping village in NC and could go into a whopping four shops out of a hundred or more and could eat at a Blimpies and inside a hot dog shop out of all of the places to eat... not ONE restaurant out of all of them.
The ADA is a sham.
I live this life... being the outsider, the one that is not thought of when plans are made, having to hear "why don't you just..." and this place used to be where I went as a refuse from that. This thread terrified me. If she had good and bad days, who are we to judge that? Who are we to know?
I don't really care.
(hit innocent bystanders?... people on meds should not drive)
I have good days and bad days myself.
r--your predicament is v. different from mari's --you have a PHYSICAL impediment to access--mari cannot recall dates, places, math--UNLESS it is about her condition and then she holds all the cards. Funny--you'd think her condition would preclude new knowledge--in fact mari has said so--however she is very adept enlightening us all on CO poisoning--a thing that, BY HER OWN WORDS--precludes her from learning ANYTHING NEW. Case in point__she DID learn new things when she learned, to the nth degree, her own condition.
Makes me call BS.
wanna know what I think?
yes. I do.
I understand your point... the whole thing/attitude just makes me very nervous.
I was not always this bad and have dealt with a lot of the same "arguments".
be it physical or mental (i am a firm believer that a mental illness IS an illness, ya'll) I sympathize with those struggling to find meaning in their lives and to have a FULL life despite disability. I think mari's own, personal story is full o' holes. Yours, r, is not.
Wanna know how many disabled American's i've helped? about 35. In 1 and 1/2 years. I've NEVER, EVER seen a disabled ohioan -rc'ving disability bene;s--ever, ever have to depend on the food bank. If I DID--I would also know that the food banks in Ohio are plentiful and well-stocked 24/7--I would also know that church's the city 'round are MORE than willing to donate to causes----MORE than willing. Actually they are begging for families to help.
America is a generous nation.
We suffer from fraudulent claims----we get a bit leary. people on welfare? they are disadvantaged--535/mo. and about 200/00month food stamps. that's 735/mo.(assuming two in the household) WITHOUT A HOUSING VOUCHER OR GAS/ELECTRIC VOUCHER! mari forgets to tell us that she gets BOTH.
Still fighting for SSI and my own Ins. company's disability... no fun. I paid for both, have been since I was fifteen.
I am a HUGE burden on my family.
yes. I do.
oh, that was rhetorical. i think i'm on record somewhere here......
if it quacks like a duck....
rkzen--I'm a specialist--I know how to score claims. My job as an occ. nurse was to try to deny claims..some claims just cannot be denied and other claims are too hairy to get into--easier to settle. PM me. As an occ health RN at GM AND AKSteel--I know what flies and what doesn't. You know that the average GM price of an auto is puffed up via three thou. b/c of ctd? (continuous truama disease)? Every time you buy a new GM auto you are subsidizing an elbow/wrist/shoulder CTD/surgery. With time off to heal. usual length --6 months. then, after said employee has been surgically fixed-90% come back with job-killing restrictions. You all expect GM to remain competitive after that? False claims have brought our production to it's knees. You wanna blame a senator for shipping jobs to China? Try blaming those who have fucked and sucked the system forever--
People with cognitive disorders may be mobile, but they labor under burdens that those with physical handicaps do not. My son is, at present, being verbally and emotionally abused by his immediate supervisor, and I'm not real sure he isn't being deprived of tip money through theft and deception because of his inability to comprehend things that you and I take for granted.
As to the issue of how someone on a limited income spends their money, let me just say this: If you haven't had to modify your entire life, probably for the rest of your life, to try and subsist on a limited income, may I humbly suggest that you probably have absolutely no realistic idea of what it is like. To suggest that Mari shouldn't complain about difficulty obtaining decent food through charitable sources if she's got an Internet connection is patently ridiculous. Life is *not* about squeezing every damn cent until you dry up and blow away, but that is by God the way our society treats the disabled.
If my son, or Mari, are expected to be even more isolated than his/her conditions cause them to be anyway, as they would be without Internet, or television, or telephone, or transportation, or pets...they'd be just about as well off dead. Life is about living, not surviving. People like Mari and Stephen are trying to do just that...live. Put on other people's shoes for a serious amount of time before you go around telling them how full of shit they are, my friends. Really.
And, just for the record, although I like Mari just fine, despite not always buying her politics or concerns, my position on this is derived strictly from my (ongoing) experience trying to see to my son's welfare, given his very limited resources. In fact, I seriously fear for his ability to survive once myself, my family, and his pretty much worthless mother - are gone.
els--i went from 50,000 year to 15,000/year. I'm still here.
and I've never needed to go to a food bank--thank goddess.
perhaps mari isn't praying to the right god?
thing is, els, people CAN make it. despite hardships or Absolutecan't do it-ships. even the least of us can contribute----I've a neice and a nephew who are CP--you think I or their parents feel they are doomed? Hardly.
Mari and Stephen are surviving. And who the hell said anyone was giving up...or should give up? The issue isn't whether they will survive, at present. The issue is if they should shut up and like it, as I've been reading it.
Check back in a few years and see if Mari is still online, or if Stephen is still living independently and indoors. At this point, though, I would expect the opinon to go something like, "See, toldya you should have saved up."
Sorry, but I see some very judgemental points of view being thrown out here, mostly by people who aren't in these circumstances. Speaking from the point of view as regards my son, the only way he is living above his means is due to things either provided outright or subsidized by me. He's luckier than Mari in this way. And trust me...my kid *wants* to earn more. But he's incapable of doing so. Utterly incapable. Anyone who wants to drop by and look at his humble possessions and learn how he got them and see what he does to maintain his "lifestyle" is more than welcome to check it out. In fact, more than welcome to *try* it for awhile.
And, Bri...your current income, with tutition, child support/ADC/etc...is $15k? If not, how long did you have to subsist at that $15k level? Just curious, as that's a couple of thousand more than my kid makes right now with disability, food stamps and his job, after taxes and child support are taken out.
els--my income is indeed 15,000/year. I used to bring down 50,000/year. I lived on 535/mo with 200/mo in food coupons for five months. I fed a 14-year old on 200/mo--that breaks down to 50/week for food for a teenage boy who measures 6'1" and 180 pounds. i have a sister who is raising two children who suffer from CP--a 14 year old girl and a 10 year old boy. Because I prodded them, the parents applied for bene's. it depends on mom and pop's income how much the children are entitled to. every year they submit their income to get an estimate for the two disabled children. both children suffer grand mal seizures, ADD, fine-motor disability and more. You think we've all forsaken them? No.
i've lived on 535/mo with 200/mo food stamps for six months including a 15 year old boy. It can be done. Currently i am living on 1600/mo. i was awarded a stipend b/c i won a scholarship--i applied and won it based on merit. sue me.
PS-as a workingRN i made 2300/month.
Girl, I'm not getting snippy with you about what you've done for yourself (quite the contrary, I remember at least one PM wherein I lauded you for your efforts), nor did I say anyone was abandoning anyone. I did say that a time would come when there wasn't someone around to take care of my kid. That might happen to your relatives, too, some day.
Screw it. I'm getting too defensive here. I guess I'll just leave it at "handicapped people deserve what happens to them if they aren't miserly" before I piss off a friend.
A year ago when I bought the dog, I was allowed to earn $400.00 extra dollars per month by SSDI.
allowed? meaning, if you earned more than that, you'd lose your benefits? isn't that a little fucked up? couldn't you earn more than that plus the meager benefits that you whine about if you moved out of the mountains and looked for work?
it sounds to me like you;re content with the deal you have worked out, and are happy with that lifestyle. that's great. i still have to pay my taxes, and they won't get any cheaper if you get a job.
my only advice on this topic is that if you are unhappy with the product supplied by the food bank, let them know it by not patronizing it. maybe they'll go out of business, or a competitor will arrive and outshine them.
then again, if you got too hungry, you could always eat a dick ;)
ah...the Beauty of Marichiko--STAFF SPLITTING!
I've known this for from ever.
I've dealt with loads of very deserving disabled folk--their biggest, brightest asset? their want to contribute--no matter how small.
allowed? meaning, if you earned more than that, you'd lose your benefits? isn't that a little fucked up?
Yeah. It ought to be set up so that for every dollar you earn, you lose 50 cents of SSDI, or something like that, to make it easier to ease back into the workforce.
Yeah. It ought to be set up so that for every dollar you earn, you lose 50 cents of SDDI, or something like that, to make it easier to ease back into the workforce.
mr. Obvious? No.
the 'system' should help the helpless to engage in society. It's good for the mental health plus more. You wanna deprive good people the chance to contribute? talk to someone else. Lots of folk want to m atter...you can volunteer without loss of benes....or didn't you know that?
I had the impression that if she made more than X, she'd lose all of the benefits altogether. If, in fact, you can earn what you want, but you give up SSDI dollars on an even scale, why not work? it'd be like a safety net, right?
Elspode and rkzenrage, very eloquently put.
The system of capping anything you earn over your benefits is the system we use here too.
I think people are allows to earn about £15 pound a week above.
mr. Obvious? No.
the 'system' should help the helpless to engage in society. It's good for the mental health plus more. You wanna deprive good people the chance to contribute? talk to someone else. Lots of folk want to m atter...you can volunteer without loss of benes....or didn't you know that?
Huh?
I don't get the connection between what I said and what you said.
My point was that if it is currently set up so that if you earn over a certain dollar amount you lose a large lump sum, then that actually discourages the recipient from earning money unless they can make enough to cover the entire SSDI payout and more. If, instead, the SSDI was decreased slowly as the recipient earned more, then every dollar they earned would reperesent a net increase in income, and there would be no point at which earning another dollar would be a net negative.
I think everyone should be allowed a carte blanche---no matter what the crime. At least twice. Maybe three times
After that? I think it should be given. People here have rested on a given.
Socialists? God, I admire you--you who have never, ever been exploited. you pure white souls. you gorgeous lovlies.
Huh?
I don't get the connection between what I said and what you said.
My point was that if it is currently set up so that if you earn over a certain dollar amount you lose a large lump sum, then that actually discourages the recipient from earning money unless they can make enough to cover the entire SSDI payout and more. If, instead, the SSDI was decreased slowly as the recipient earned more, then every dollar they earned would reperesent a net increase in income, and there would be no point at which earning another dollar would be a net negative.
it;s possible that I didn't mean YOU>
I draw SS disability. By luck I paid enough in to get around $1200 each month before Medicare is taken out. Once I cursed because I worked construction and when you changed jobs they started taking it out again. So by my figures, after I pay bank, insurance and a few other things I have $599.83 bucks to pay city, which is gas, water, trash. Phone, is dsl, and video, cable. VA for meds. All that's left over I can piss away on food, beer, gas, repair house, any drugs and DR. bills. The tooth fairy and eye glasses. I have local. BTW, while waiting for this to happen I had damn little help from any Gov. For around 3 years.
If you have the dream that the benefits are the same for every state, you are wrong. If I was crazy enough to move to, say CA. I think I could get more money. If you move here from CA. you loose money.
Walk a mile in someone else's shoes. Hey I'm happy as a pig in shit. Go Mari.
:bitching:
Sorry. I now remember what set that rant off. I sent off for the info on working while disabled. Because I was going nuts, hey it got my 1st computer. Anyway they said I could earn in a month what I could make in about 3 days, when able. So I'm going to drive to ,say the west coast and make 2k a week and get down and can't work, get kicked off and have to wait 3 years? Hell no. Now I don't even have a choice.
Socialists? God, I admire you--you who have never, ever been exploited. you pure white souls. you gorgeous lovlies.
never been exploited? Fuck you and the spaceship you dropped down in.
The story of Aesop's life has more holes than a colander.
Does that make his parables less valuable for teaching problems and how (or how not) to deal with them? :smack:
Someone said 'schizos' can't operate computers.
HELLO??!!!!
Better put your brain in gear next time before you open your mouth.
Which is why, to this point I have never really paid much attention to Mari. I think she's full of BS. Due to Co poisoning or not, I don't care and can't get inside her head to find out what the truth really is.
Keeping your friend in your life despite her problems is your choice Aliantha. I neither condemn or salute you. Ignoring Mari, and those I know like her IRL is mine. I prefer to surround myself with people who, depite the gravest of situations, try to look at the good things they still have going for them and focus on that.
I only have time/space in my life for so many people. I'd rather it be spent with positive ones. Am I a cold heartless bitch? That's for you to decide for yourself, and is entirely your opinion.
Unlike you I have time for people who're perhaps less fortunate than me, or have a different world view, or have faced different challenges.
Because of this, I'd suggest it's possible I've had a lot more interesting experiences than you may have had...that is of course if what you said is true and you only surround yourself with likeminded people.
If you want to ignore someone on an internet site then go ahead and do so, but don't try and justify your actions with bullshit statements.
Decision pending.
Ignoring Mari, and those I know like her IRL is mine. I prefer to surround myself with people who, depite the gravest of situations, try to look at the good things they still have going for them and focus on that.
Except you aren't ignoring are you? It's like some others on here, who go to the trouble to post that they've heard it all before.......well, if the conversation bores/irritates you then here's a clue: back button at the top of your browser; press it and go read something else on the site, there's a lot of it. People keep expending time and energy talking about how they don't want to hear any more of this; that they've heard it all before; that it's boring and (in some cases) they don't even believe it.....it's a little like watching a TV programme you hate and complaining loudly throughout the show. Just change the fucking channel.
I don't, nor I doubt does anybody else, read everything on this site. there are threads i just never click on, because the topic doesn't interest me and there are threads I visit for awhile until they start pissing me off and then I dump then. If you see a mari post and when you go check it out, you think it's just the same old bullshit, and that annoys you, then go read something else. I just do not understand the need people have to expend energy on a thread they see as pointless and annoying. Then having baited the fuck out of Mari, they complain that she is always talking about her illness or income. Don't throw things at someone and not expect them to try and defend themselves, it's just unreasonable.
Jesus H. Fucking Christ. It's so utterly disengenuous to needle someone into defence then round on them for that defence.
And Bri what the fuck is all this about 'Schizophrenics can do this, schizophrenics can't do that?' How many tens of patients did you base that little gem on? That explains a lot about your attitude, you clearly think if someone doesn't fit your very (medically and psychiatrically unsound) narrow perception of what is meant by such disorders. No wonder you didn't stay in the field, my guess is you left because you sucked at it.
Everyone has a sad story. No matter how large or small it's important for them to be understood.
Some of you are like me in that the only sad story is seeing threads like these.
Everyone should be giving the benefit of the doubt. Especially on a message board. We only see on quarter of a person this way. There is enough misunderstanding in the world why add another layer of hurt.
Again--no one has mentioned anything about ideas to get mari back on her feet.
wow, I was just thinking of ways I could save if I had the misfortune of having such a small income.
My idea:
Move to a big city and live downtown!
Take public transportation.
Get a bike.
Just changing local to an urban district and eliminating the need for a car would easily add mucho money.
I would absolutley hate to be stuck in a small town ( without money) for you would be at the mercy of the town yokels. ( kinda like here :p )
Unlike you I have time for people who're perhaps less fortunate than me, or have a different world view, or have faced different challenges.
Because of this, I'd suggest it's possible I've had a lot more interesting experiences than you may have had...that is of course if what you said is true and you only surround yourself with likeminded people.
If you want to ignore someone on an internet site then go ahead and do so, but don't try and justify your actions with bullshit statements.
Decision pending.
I
did not say I didn't have time for people less fortunate, or have a different world view, or are less fortunate. I said
I prefer to surround myself with people who, depite the gravest of situations, try to look at the good things they still have going for them and focus on that.
I most definately do not surround myself with likeminded people. Why the hell would I practically live here while at work, where there are plenty of like minded people I could be hanging out with in this very building?
the polarization here is interesting. with topics like this, it becomes very clear just who the 'likeminded' people are. At least, to me it does.
Here's the thing: Those of you that are defending Marichiko feel like she's being unjustly attacked by bitter and cold people that are insensitive to her plight. Those of us who've had it up to here ^ with her, have heard it all before in various iterations of woah is meisms, and after 2+ years of it, she has changed nothing.
My idea:
Move to a big city and live downtown!
Take public transportation.
Get a bike.
Just changing local to an urban district and eliminating the need for a car would easily add mucho money.
even the crazy chick can figure this out.
mari CHOOSES to live in an environment that provides very minimal support for those who cannot or will not do for themselves. She is obviously satisfied with her lot, and bitches mainly for attention. I believe that she is truly struggling financially. but, guess what? that's her fucking choice!
she PLAINLY has the acumen and the education to work if she chose to. despite all of her excuses to the contrary, her very thoroughly researched reasons why she can;t work are, in direct conflict with her statements, evidence that she COULD. Not in the mountains of Colorado, maybe, But in say.....Denver, or Boulder or somewhere where there are companies that need employees.
bottom line: she chooses her lifestyle. and then she bitches about it. I say tough shit, fuck you, get a job if you don't like being poor, or be happy with what you are GIVEN.
cocks
Those of us who've had it up to here ^ with her, have heard it all before in various iterations of woah is meisms, and after 2+ years of it, she has changed nothing.
Comment from the peanut gallery: Then why do you continue to play the game? It reminds me of the playground where the big kids all pick on one of the others. After two years, why do you still derive satisfaction from the game? Could it be that some of you have self esteem issues and are throwing your own character defects out in the open? This has been a very interesting read, I must say.
Carry on.
she PLAINLY has the acumen and the education to work if she chose to. despite all of her excuses to the contrary, her very thoroughly researched reasons why she can;t work are, in direct conflict with her statements, evidence that she COULD.
On what knowledge of the myriad ways in which neurological problems can and do affect disparate individuals, do you base that statement?
I wasn't intending to involve myself in this discussion any further, as i believe it has become skewed towards the ridiculous and frankly nasty; however, i feel compelled to refute the constant assertions that anything Mari has written here bear any kind of evidence towards her ability to work, or lack thereof.
In my work as a councillor, about ten per cent of my cases relate to social services and/or provisions. I have a regular queue of people for whom the proving of their disability is less than simple. Despite letters and reports from doctors and consultants, people are often refused on the grounds that they seemed alright/cogent/healthy/confident or articulate on the days they have had to interract with staff. The fact that these people are often choosing to visit the agency to deal with their claims on precisely those days when they are most able to cope with the process is rarely taken into account.
The thing I find most sickening about this, and I find it strongly echoed on this board, is that those people are accounted as liars and malingerers and thereby forced into a position of (or in the case of marichiko taunted into)
defending their condition.....
defending a condition they most likely hate and fighting for their right to be recognised as sick/disabled. Psychologically, I cannot believe it is helpful for people who are labouring under an illness or disability which is controlling many, aspects of their life, to have to defend that illness or disability.
The thing I find most sickening about this, and I find it strongly echoed on this board, is that those people are accounted as liars and malingerers and thereby forced into a position of (or in the case of marichiko taunted into) defending their condition.....defending a condition they most likely hate and fighting for their right to be recognised as sick/disabled. Psychologically, I cannot believe it is helpful for people who are labouring under an illness or disability which is controlling many, aspects of their life, to have to defend that illness or disability.
Who are those people? Give me some examples of the strong echoes, ones that don't invlove multichiko.
Y'all are talking about one individual person, right? Ah hell, let's lump all "disabled people" together. "They" are "all the same" right?
Comment from the peanut gallery: Then why do you continue to play the game? It reminds me of the playground where the big kids all pick on one of the others. After two years, why do you still derive satisfaction from the game? Could it be that some of you have self esteem issues and are throwing your own character defects out in the open? This has been a very interesting read, I must say.
Carry on.
pussy
'Those people' refers to the people I represent; the echoes, refer to this thread: the attitudes displayed to Mari's condition; the legions of armchair neurologists/psychiatrists/fraud detectors; the experiences brought to the debate by several other posters; and finally, the experiences I had during a prolonged illness in my childhood, teenage years and early twenties, which I started to post about and then decided to erase and start again, because a significant proportion of the people posting here cannot be trusted with details of such a personal experience.
well, we've got that going for us then, i guess.
What the hell? I was looking for a real answer Dana. Who here gets picked on for anything other than the bullshit they post?
I'm all out of answers Jinx, I have plenty of questions, but frankly I'd rather not know the answers to them.
I guess that would be the one who doesn't post BS......
now, who's going to cast the next stone?
The innocent of course :P
Can we just get back to the cricket now???
You lot copped another thrashing. ;) Shall we do a rehash? lol
*grins*
Losing at cricket is what we do....it's our thing.
And you do it so well. :) Not to mention often...hehehe
That's the trouble with you ozzies.... you don't recognise what all true-blue Brits are taught.... it's not the winning that counts, it's the taking part...
*SIGHS* I guess we'll never make gentlemen of the colonials....
Too bloody right you wont mate! ;)
btw...only losers say things like that Jay. :D
That's old thinking, Ali..... modern PC atitudes are all-inclusive, non-combatant and recognise that all persons have applicable skill-sets, and seek to discover the areas where those skill-sets might best be deployed....
oh, and you mis-spelled 'lu53rz'...
Ahuh...and if you choose to participate in a sport which is obviously outside your skillset, you sometimes look like a lu53r. ;)
It's all about transferable skills these days.
mmm... 'scuse me (see how polite I am, being a Brit?) isn't this about the ashes? which.... refresh my memory here... WHO won last year?
For the first time in HOW many years? lol
We don't win often....but my when we do, we win well.
lol...you just keep telling yourself that Dana.
The trouble with you lot is, you sent the best of you overseas. ;) If you'd just kept a bit of the better stock, you might do a little better. :)
ahhhhh....you've unwittingly stumbled onto our supersecret, 'sleeper' programme.
lmao...it's obviously not that supersecret.
hey....we're British, we don't do proper secrets, just commonly understood things that nobody talks about.
It's rather ironic that your best secret agent is a figment of someone's imagination huh? lol
That's exactly what we want you to think.....nyah....nyah nyah.....oh hang on, no that's right. Yep.
I was always oppossed to Transportation.... we should have hanged them....
Yeah well, had you done that, you might have been able to win a match of cricket. :)
Who are those people? Give me some examples of the strong echoes, ones that don't invlove multichiko.
http://health.groups.yahoo.com/group/IDA/messages
You have to sign up as a member, though, and I warn you that they will not exactly love you if you show them the same attitude as you have me.
rkzen--I'm a specialist--I know how to score claims. My job as an occ. nurse was to try to deny claims..some claims just cannot be denied and other claims are too hairy to get into--easier to settle. PM me. As an occ health RN at GM AND AKSteel--I know what flies and what doesn't. You know that the average GM price of an auto is puffed up via three thou. b/c of ctd? (continuous truama disease)? Every time you buy a new GM auto you are subsidizing an elbow/wrist/shoulder CTD/surgery. With time off to heal. usual length --6 months. then, after said employee has been surgically fixed-90% come back with job-killing restrictions. You all expect GM to remain competitive after that? False claims have brought our production to it's knees. You wanna blame a senator for shipping jobs to China? Try blaming those who have fucked and sucked the system forever--
It's "funny" I have been told by the govt. and my ins. company that "eventually" they will have to pay and they know it, they are just putting it off for as long as they can because I am young (how long I have to live non-withstanding).
Problem is that what is wrong with me is so rare there is no name for it. What they are doing is taking each of my symptoms separately...
You can work with a herniated disk (I don't know about three, but there you go), advanced arthritis, osteoporosis, nerve damage, liver damage, broken bones, etc, etc... so they are denying the claim as many times as they can get by with.
I have one more time of just filing before getting into the review board with a lawyer with them... again.
When we get our paperwork together, I'll contact ya', thanks a lot.
Rzkn, it doesn't matter how rare it is, if it's out there there's a name for it. What you are describing are symptoms which are isolated from each other, you would have to show that some common factor connects all of your symptoms for it to be a single 'condition'. The name for what you seem to have is 'Man with many painful injuries'.
They are not isolated from each other, it is a genetic issue, not so easy to show in short-hand (they system is set-up to deny complex disorders) and how do you know so much about this? I have not discussed my disorder in detail here... you assume much, as ever.
'Those people' refers to the people I represent; the echoes, refer to this thread: the attitudes displayed to Mari's condition; the legions of armchair neurologists/psychiatrists/fraud detectors; the experiences brought to the debate by several other posters; and finally, the experiences I had during a prolonged illness in my childhood, teenage years and early twenties, which I started to post about and then decided to erase and start again, because a significant proportion of the people posting here cannot be trusted with details of such a personal experience.
I have, and will not, discuss all of my disorders or how I know about other's experiences with different types of illness.
There is a lot of the last acceptable prejudice in here...
What I'm refering to is your statement about it being so rare it has no name, nonsense. If research has proven that there is a genetic corralation between those symptoms then it has been named. If you don't want to give details about yourself then that's fine, although you could just post a link to the medical journal that published the study on the genetics.
LOL... I love that you are so transparent. My condition is genetic, it does not currently have a name. The only person who may have had it, that we know of was a great uncle. I am in journals for several of my conditions (a medical textbook for my brain) and could give a shit if you believe me. Your respect or belief in me is a thing that I hold in less regard than something I ate yesterday.
As for schizophrenia and what those that suffer from it can or cannot do, the degrees of that disorder are so extreme as to make that conversation impossible to have on that level. Depression is currently listed as a form of it.
Why is this about my respect or belief in you? You said something I thought was out of whack and said so, all I asked was that you post some other information to clarify what you said. You must know the names of the journals you mentioned, I have access to all the medical journals at the university so it would be simple for me to look up this stuff for myself. If you aren't comfortable with me finding your real name (unless you somehow had it omitted from the study?) then just say so, don't make this personal.
You arn't going to win alot of trust by saying that you are the either the only person who has ever had this condition or a close second and then refusing to point to some literature on the topic. Now there's another posibility entirely, do these journals say that they have found that your symptoms are part of a larger genetic disorder? Or do they say that there may be a connection? Or for that matter is there one which covers this at all, you said several of your conditions which insinuates that they aren't talking about a singe genetic condition.
Having a disorder is not a licence to get angery and rude to anyone who asks you about it. Even if I was directly questioning the validity of your claims, then you should point me in the direction of the studies which support your statements, not claim that I am transparent because I don't take the word of someone I don't know except over an internet message board as infallible.
9th, you are fulfilling rkzenrage's prophecy that he will be turned on next after Mari. You're making him more nervous.
9th, explain to me why anyone needs to show that they are, actually, sick? There is nothing "out of whack" about any of my statements.
I have a low opinion of you based on your actions in this forum, long before this thread.
You are showing that what I stated about what was to happen to anyone discussing their illness is true.
The last acceptable prejudice. I think that's very well put.
Do you NEED to show me that you're sick? No really, but what you're doing now is certainly not convincing me to believe you. You are asking me to believe that you have a genetic mutation of some sort which causes these symptoms, but is so rare that it has never been classified. Do you realize exactly what the odds are on that? This is not even something like schizophrenia which is a long standing and well documented disorder. You are saying you have something that no one has ever had before, or at least never in a developed nation. We have names and studies on conditions that affect only one in many millions of people, so if it is really genetic then either the mutation occured within the past few generations or you would be able to trace it back much further than your great uncle.
I'm a bioengineer, this type of stuff is my bread and butter and I know all about how stuff like this goes through the scientific community.
You are asking me to take a multi-billion-to-one occurence at face value (yes, that is the probability of what you claim happend, actually happening.)
Oh, and please don't go on about your opinion of me. This is an internet message board for crying out loud! You are not my coworker, my collegue, or really even an acquaintance for that matter. That's why this is not a personal attack and why I'm not worried about your reaction affecting me in any way.
EDIT: When did asking for more information become an attack?? Just send me the name of the journals
I don't care id you believe me, I have a genetic disorder, one that causes a all of what is wrong with me, as well as having caused some birth defects. I know what is wrong with me and how many times I have had it checked and by how many specialists.
I also know what the odds were, that is why it has no name, yet.
This is why I did not want to discuss this and why I am done with this thread.
I hope you are going to be in a lab and not actually working with sick individuals... I really do.
I bet the first person to have any genetic condition that causes disparate symptoms (and there are many such) has been treated to the same skepticism. Everyone needs precedence as proof. Bit of a problem if you are the one setting that precedent.
let's call it Rage's syndrome.
What I find really disheartening about this whole discussion, is that I really did think that America was way ahead of the Uk on disablement issues. Not in terms of financial assistance, but in terms of general attitudes and understandings. I've been quite...taken aback by some of the general assumptions displayed here. I can only hope and assume that it's no more representative of American culture than some of the prejudices displayed by Brits here are representative of our culture.
I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"
Hmm,
Lessee...Gays *tick*, Arabs *tick*, People with disability *tick*, the poor *tick*.....hey, 9th, have you done blacks, women and the Irish yet? I think you may be looking at a full house.
Rzkn, it doesn't matter how rare it is, if it's out there there's a name for it.
Not necessarily.
Whatever my dad picked up in Vietnam has yet to be identified and named. For 40+ years he's suffered from this. It has various symptoms that are treated as best as they can be, but no cure forthcoming.
Not to mention the unknown infection Mr Fargon got at the VA, unable to be cultured. Suspected to have been transmitted from one of his three room mates, all Vietnam vets.
If Rkzn says his condition does not have name, I am inclined to believe it.
Rzkn, it doesn't matter how rare it is, if it's out there there's a name for it. What you are describing are symptoms which are isolated from each other, you would have to show that some common factor connects all of your symptoms for it to be a single 'condition'. The name for what you seem to have is 'Man with many painful injuries'.
Not so.Mike went to Mayo in Jacksonville and the DR told him, If I can't find it I can't fix it. After 3 days of test. WTF.
My friends son went without a diagnosis throughout his short life. I believe they named it after his autopsy. Genetic disorders don't always fit neatly into little boxes and folks don't generally have unlimited time and money to pursue a name. Ease their suffering now, work on the label later.
I've said nothing about whether he is in pain or not, I can't say anything about that one way or the other. What I can dispute is whether he's right in saying he has a genetic condition that has no name, or whether he's in pain and his doctor doesn't know why.
Really, if doctors can't find what's causing the problem, then how can he make such detailed conclusions? And why can't I look at the information if it's in public health journals??
My older brother died when he was 5, I was three. He died of a genetic disorder. My cousin has it but is still alive. They think it might be Noonans disorder or Chromosone X, but they're not really sure. Whatever the problem is, their symptoms are very similar, but not exactly the same. They can't name it really, but it causes severe intellectual disablement along with physical disabilities - severe enough to kill a child at 5 yrs of age.
9th, you're being incredibly short sighted and rude. Think about things before you go posting them. You don't know shit about what you're saying. That's clear to everyone here.
I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"
Excuse me, but I have yet ti get a reply from you to my pm where I offered to send you a bibliography of medical publications regarding the effects of carbon monoxide poisoning. I don't think you want the science, I think you want to revel in your prejudice. Tell me what scientific coursework you are now taking. Molecular genetics? Cell biology? Human physiology? Embryology? Organic chemistry? You seem ignorant in all these areas. You also seem extremely ignorant of the scientific method.
A person with an extremely rare genetic disorder goes into his family doc. The doctor flounders around and refers you to a specialist. The specialist suspects a genetic disorder, but there's nothing in the literature. Now, if that specialist is affiliated with a University medical program and has the time and interest, he may apply for a government grant to find out more about this disease. But congress has just cut research funding in favor of killing people in Iraq. Three years later, the scientist gets the funding to begin his study. He then has to find a statistically acceptable number of patients with the same symptoms. Once he's done that, he and his grad students have to do research involving a double blind study that will be acceptable to a scientific, peer reviewed journal such as JAMA.
JAMA accepts the paper for publication and it comes out 6 months later. The government finally adds the condition to its list of disabling conditions 5 years later.
Meanwhile, RK has lost everything he has, is sicker than ever, and living on the streets. (God forbid).
Wake up 9th, I don't know who you are, but you are neither a scientist, nor are you living in the real world.
Aliantha's description is typical of a chromosomal disorder. Rkzen's description, per his post, does not fit the pattern of these disorders. Note: I am saying nothing about his symptoms, nor his disability, and I am not stating that he does not have a rare disorder that has never been seen before and has no name, and which is written up in medical texts and journals that he declines to cite. Rkzen listed several things as part of his medical condition, said they were part of a genetic disorder that is so rare as to have no name, and then declined to give any further information. That is his prerogative. I am sure he does know what he has.
And like everyone else, he has a right to his own privacy.
Really? All I did was ask for the name of the journal that published the articles he keeps mentioning. I asked how he knew what he said he knew, he simply repeated the same lines again. Look at each of my posts, I never said he was faking a disorder, I even said I was not questioning whether or not he was in pain. I simply questioned asked for information which he had already said was public.
I admit saying that his story was a long shot, and it is. The claim of a brand new disorder with no previous documentation is not something to sneeze at.
I have not done anything rude Ali, I just asked him to post the journal names. I asked for information he has said is readily available.
Mari, I have not responded to you because of a number of different reasons, the first of which is finals (2 down, 5 to go). I won't have time to really read over the articles until the end of next week, so feel free to send them now but I want to read them all before replying.
I don't know how you plan to back up your claim about my coursework, but I have taken or am currently taking all of those but the human phys which I am taking Junior year. This semester I'm taking cellular engineering, which covers cellular systems and organic chemistry as well as genetic engineering, and organic chemistry.
I know perfectly well that disorders take years to collect data on, but again, he said that there were already published articles on this!!! I still wait for those if he chooses to release them.
snip You also seem extremely ignorant of the scientific method. snip
snip He then has to find a statistically acceptable number of patients with the same symptoms. Once he's done that, he and his grad students have to do research involving a double blind study that will be acceptable to a scientific, peer reviewed journal such as JAMA.
JAMA accepts the paper for publication and it comes out 6 months later. The government finally adds the condition to its list of disabling conditions 5 years later.
Marichiko, I believe you stated you were a librarian? For thirty years? How current is
your molecular biology? There could be more than one reason that people are not racing to consult you on scientific matters.
Case reports are written on patients with very rare diseases; there is no need to find an 'acceptable number of patients with the same symptoms' before reporting something new. Clinical studies are structured in different ways. While the double blind prospective study is the gold standard, not everything can be studied that way. There are many other study types that are acceptable to peer-reviewed journals.
Your summary of how the research world works is out in left field. A little less posturing on what constitutes a 'scientist' or the 'scientific method' would become you better.
9th, let me tell you that even if your intention wasn't to be rude, rude is what you've been.
That in part is what I meant when I said you should think about things before you go ahead and post them. They're confrontational and derogatory. If I were rkz, I'd be offended by the way you've posed your questions.
Personally, after the responses I have been met with by some members of this board, I don't blame RK for his reticence. I have gone into stunning detail, cited scientific studies, etc., etc., only to have my words ignored and the same tired old accusations made of me. There are certain people here whose minds are firmly closed. Its like trying to discuss religion with a fundamentalist - a complete waste of time and energy.
No one else around here has the demand placed upon them that they share their medical records, their private information, or been asked to give every last detail of their personal lives.
Why should RK or I be any different? 9th engineer claims to be a student. Why don't I demand that he post copies of his college transcripts, along with his real name and social security number to prove it?
LJ claims to be a finance manager at a car dealership. Why doesn't he post his real name, his resume and the name and phone number of the manager of the dealership he works for to prove it?
If you treat a person with hostility and contempt, why are you surprised when they don't open up to you?
Orthodoc, I appreciate your input into the discussion thus far. I have no desire for people to race to me for scientific information. My course work was too long ago, and I am not as capable of researching the scientific publications as I once was.
Correct me if I am wrong, but I believe case reports are often one page brief articles of an unusual situation a physician or researcher has encountered. Case reports do not make the list of medically accepted disabilities that social security uses when making its decisions on whether to award a claiment disability benefits or not.
And thank you for a well deserved reminder that I am NOT the know/all and be/all of scientific publishing criteria. ;)
LJ claims to be a finance manager at a car dealership. Why doesn't he post his real name, his resume and the name and phone number of the manager of the dealership he works for to prove it?
i'm pretty sure i've done all of that at one time or another. why not just ask UT who sold and financed his truck for him? Richlevy has visited my former employer.
i don;t think anyone has seriously questioned or doubted your medical condition. it's just your usage of it.
funny when elspode uses his son as an example of how people are mean to disabled people........at work. and you think it defends your position.
i thought you were not posting to this thread anymore? or did you forget that too? aren;t you late for your nap?
i don;t think anyone has seriously questioned or doubted your medical condition. it's just your usage of it.
yes they have.
funny when elspode uses his son as an example of how people are mean to disabled people........at work. and you think it defends your position.
yes it did.
They are not isolated from each other, it is a genetic issue, not so easy to show in short-hand (they system is set-up to deny complex disorders) and how do you know so much about this? I have not discussed my disorder in detail here... you assume much, as ever.
I have, and will not, discuss all of my disorders or how I know about other's experiences with different types of illness.
There is a lot of the last acceptable prejudice in here...
Whoa, chill out. What prejudice?
I don't see anyone questioning your problems, only how you determined it is genetically based. Apparently you feel it is a genetic condition because of family history rather than a medical determination by doctors, that are stumped.
I'm sure you're aggravated by the system, that won't accept that determination and is trying to stuff you in several pigeon holes at once. But, that's not our fault, we're not them.
There's no reason to be defensive here. There's nobody on this board that's going to effect you life one way or the other.
If you don't want to discuss it that's your privilege, but if you bring it up, it's unreasonable to expect people not to ask questions. After all, that's what the board is about, topics of discussion.
Medical conditions that are named, have to be described in detail and parameters established to determine if any other case falls in the same category or is something else.... perhaps something new.
Because the insurance companies will try to nit pick, the doctor naming the condition has to dot every i and cross every t. That means a lot of time and effort, taking time away from actually treating patients. It would be reasonable to expect some doctors to concentrate on treating patients rather than writing papers for medical journals.
Peace out, we're not the enemy.... ok? :chill:
Wow, I don't think I've ever seen so many people with axes to grind in one place, or as many people willing to get in over their heads and make obvious fools of themselves.
Marichiko, you are a librarian and you're trying to tell a Bioengineer he has his stuff wrong??!?:haha: :biglaugha :crazy: Are you really prepared to go head to head with both of us to back that up? You don't even have the training to know the basics of ANY of the topics you mentioned. I don't care how much google searching you do or how many hours you spend reading WebMD.com, you still do not know enough to question either of us.
Rzkenrage, cool your heels man. 9th isn't trying to insult you. You made a pretty huge claim and then said that there was information in our database explaining more about it. 9th wanted to read it, you said no, he got angry. Everyone I know in our department has a hyperactive sense of skepticism, if you raise even the tiniest red flag or say something that trips a switch somewhere we're going to go after it. It's just part of what they teach us. I wouldn't mind reading it myself once we finish up with finals this week (5 finals, last on friday at 6pm :scream: ).
@9th: Maybe you should go easier on the House re-runs for a bit.
Hmmm... Isis, I suggest you get to know the board a little better before you start making condescending comments to the folks who have been around for a while. Where did YOU get your degree from and what's your field?
Sure, I'll go head to head with you. What would you like to start with?
A plane is standing on a runway that can move, like a giant treadmill. When the plane's engines throttle up, it begins to move forward, but the treadmill is made to match the forward speed of the plane, only in the opposite direction. So, as the plane moves forward, it moves backwards beneath the aircraft. As the engines throttle up, does the plane take off?
A plane is standing on a runway that can move, like a giant treadmill. When the plane's engines throttle up, it begins to move forward, but the treadmill is made to match the forward speed of the plane, only in the opposite direction. So, as the plane moves forward, it moves backwards beneath the aircraft. As the engines throttle up, does the plane take off?
As I see it, the treadmill is a metaphor for the course of life which we all must run. The airplane wings are humor which give everyone a lift. The engines are your determination and energy. All these factors interact together just as in life. So, as you can clearly see, the correct answer is 42.
As I see it, the treadmill is a metaphor for the course of life which we all must run. The airplane wings are humor which give everyone a lift. The engines are your determination and energy. All these factors interact together just as in life. So, as you can clearly see, the correct answer is 42.
But it was the wrong question, darling......