*** LOG OPENED: Thu Aug 21 01:01:26 1997 --- Participants: Disabled (disabled@trantor.student.utwente.nl) Pei HelloKit (carlym@u.washington.edu) phoenyxx Mooooooo (dse@pacific.net) medad DopeHat (khodgdon@ionet.net) nate__ CincyKid jody- Capwriter Mimi_ (mimi@lino.com) ChanServ (nanook@eskimo.com) James--- Mooooooo via Telnet (dse@pacific.net) --- *** James--- is now known as James *** DB2 has joined #disabled AND..... Fleetwood Mac is not coming near me for a concert :( sorry to hear that jody Howdy db2! ARE WE READY TO START? how about you? how's trix up in the great north? hi DB2 :o) yeah...I missed a cool concert Sunday because I had to use all my money on a class I needed to take this fall oh, just dandy :o) . what concert Simon? please...... registration is next week... how's the hubby? *** sherri has joined #disabled lead on carly hi sherri hi sherri :o) Mimi: Queensryche hi all he's fine, babysitting right now :o) I LOVE Queensryche! ack jody: COOL! :-) babysitting? hello from Alaska he's watching Felix for me Felixsitting, we call it :o) how's the munchkin? OKAY EVERYONE, THIS IS MY FIRST MEETING USING DRAGONDICTATE, SO BE PATIENT WITH ME... did that work carly Hi sherri :o) * Mooooooo is ready!!! did i miss the meeting? :( oops * phoenyxx is getting the heat sheild up! DARN IT I DID! CALM DOWN, DANIEL... *** kath123 has joined #Disabled did i miss the meeting? * Pei cries cuz he missed the meeting. it hasn't even started... it hasn't? great... i'm just in time no pei... no you didn't pei WE'RE JUST STARTING NOW, PEI. OK HELLOKIT :) hehe. what is dragondictate? Hello from Quebec :o) good this is actually my first meeting. *** GSW has joined #Disabled act like a man pei jody- voice recognition system ???? hi mimi jody- dragondictate is a voice recognition system you can talk instead of type? Hi GSW hi FOR THOSE OF YOU MOOOOOOO DON'T KNOW, DRAGONDICTATE IS VOICE RECOGNITION SOFTWARE THAT ALLOWS ME TO SPEAK TO THE COMPUTER AND IT WILL TYPE FOR ME. hi gsw joy- yeah. although I've never used it personally 'WHO DON'T KNOW' THAT IS LOL lol HelloKit: what didability do you have? I could use that for my papers this fall..... typing is killing me now... * Mooooooo knows all cow lol Moooooo Mimi.... how's the munchkin? * Pei can believe that * HelloKit has arthrogryposis multiplex congenita... AMC is a condition characterized by multiple joint contractures at birth. More info: http://www.sonnet.com/avenues/ *LOL* works great ;o) I'm a C/5 quad hi helokit :) LOL... I'M LAUGHING TO HARD TO TALK NOW! *** CincyKid has left #disabled Mims... I taught 20 6-year-old little boys today... I want girls when I have kids.. sorry Jody I'm lagged major here, it's all coming in spurts...the munchkins fine :o) jody- LOL :) jody- are you a teacher? ewwwwww mimi lol sort of.... *** GSW has left #Disabled ANYWAY... SINCE WE ARE ON THE SUBJECT OF WHAT DISABILITIES WE HAVE, HERE IS MY FIRST QUESTION... okay.... shoot, Carly go Carly.... HOW MANY OF YOU HAVE CONGENITAL OR HEREDITARY DISABILITIES, AND HOW MANY HAVE ACCIDENT OR INJURY-RELATED DISABILITIES? I have both.... * Pei has MD, i guess it would be hereditary,,,,, Mine is congenital injury related I've always had epilepsy, but I didn't always know it I have neither...not in a literal sense. what is yours then Simon? I have congenital CP. MINE IS CONGENITAL my RA has been made worse by the 2 accidents I had at work Part of my condition is congenital....and the actual disability is from a built up-effect of the orthopedic problems I was born with....compounded by unknown effects of surgeries when I was younger. *** MrMojo has joined #disabled I've been in the wheelchair since March 11, 1993 7:05 am wb Keith central time has the meeting started yet? THAT'S SORT OF BOTH THEN, ISN'T IT SIMON? yep :o) phoenyxx: that narrows it down. carly yeah but it's so complicated to explain sometimes. the meeting has started :o) i was born thiz way. the meeting has started! :) *** DopeHat has left irc (Killed (NickServ (Ghost command used by MrMojo))) it's easier to tell people when they ask about the chair that the intelligence briefing didn't cover this planet's gravity :-) *** MrMojo is now known as DopeHat LOL lol :-) :) lol DO YOU FEEL THAT ACCEPTING YOURSELF AND ACCEPTING YOUR DISABILITY ARE THE SAME THING? * Mimi_ chuckles * phoenyxx is a UFO enthusiast :-) . No, I don't feel that way Carly Depends on what you mean by accepting our disability the two are totally separate me neither. no..... I accept my talents and faults.... sometimes I can't (okay mostly) accept my disability well, not totally, but mostly :o) i agree with mimi which leads to the question... what do you mean? * Mimi_ will think before she responds next time ;o) * Pei never thinks ;) *** kath123 has left irc (Leaving) I can accept the disability itself but after 4 years I still get fustrated about the small or secondary details more than I get fustrated about the disability itself. *** CincyKid has joined #disabled guess it cengg WELL, I THINK OF ACCEPTING MY DISABILITY AS ACCEPTING THAT I AM DISABLED AND THAT IT ISN'T GOING TO CHANGE. altough I can accept my limitations and still do alot despite them. *** Jolene has joined #Disabled I DON'T SPEND ALL MY TIME WISHING THERE WAS SOME WAY TO 'FIX' ME. I haven't gotten to that stage yet, Carly. My RA has just gotten this bad in the past year *** DB2 has left irc (Thanks for the advise!!!) carly: neither do I. Ok, I can understand that Hi Jolene :o) i wish there was a way to fix me so do I Keith me too Hi everyone. I'm new to chat--so please excuse me if I mess up! i argree carly IS THERE ANYONE HERE WHOSE PARENTS' LIFESTYLE CONTRIBUTED TO THEIR DISABILITY? not me. can I blame my mother's genes? No prob Jolene, welcome to IRC I never wanted to 'fix' me, I just wanted to ignore the whole thing no mine * Pei wisheds there was some way to fix me, but i also can accept that there may never be in my lifetime. nor mine. although I did briefly ask my parents awkward questions like that when I was younger. my mom smoked Thats a two-headed question hello Jolene :o) and of course I didn't want anyone else to know :o) nor mine it's my mom's chromosomes' fault they can contribute to it by genes, or they can contribute to it by being parents who do too much for you I can't see where my parents' lifestyle contributed in any way to my being disabled. IT IS A DIFFICULT QUESTION... ESPECIALLY SINCE SOME PEOPLE MAY NOT KNOW THE CAUSE OF THEIR DISABILITY. My dad was in the air force and I had this weird idea that somehow there was fallout from atomic tests. but I was born in 1970 and they stopped the tests in the early 60's i accept my disability but in a way i don't *** Iridian has joined #disabled don't worry, Jolene, you're already doing fine :o) BUT I LOOK AT MY YOUNGER SIBLINGS, WHO ARE ADOPTED AND ALL HAVE FETAL ALCOHOL EFFECTS... hi Iridian :o) * Pei gets frustrated at the little things i can't do and i wish i could hi jolene My medical problems were not to my knowledge inherited from my parents. Hello Moooooooo nope, not me how are you.. that's different Carly..... in that case the parent is to blame i agree pei s/join ewps me to pei :) ALL OF THE THINGS THEY GO THROUGH COULD HAVE BEEN PREVENTED. Mine was caused by my mothers womb being to small as was my next oldest sister Hi sherri, iridan ping me MOOOOOOO, DOES YOUR SISTER HAVE AMC TOO? Mimi_: if you ping me it will be the same thing, and you will get a time :) mine was caused by my mother coming from generations of inbred anglos i did about 2 mins ago mimi, nothing back yet! yes, 1 sister does 3 others dont how u r jolene? amc? i feel like everything is going backwards AMC is a condition characterized by multiple joint contractures at birth. More info: http://www.sonnet.com/avenues/ oh k Kit- What does any of that have to do with accepting your disability? /:o) (mJ) CTCP PING reply from Mimi_:72.501 seconds JOHN: RESENTMENT MAYBE? Mimi 4 mins 55secs Will that help to accept it? *** Advent has joined #Disabled Mimi- 108 seconds HOW DO YOU FEEL YOUR LIFE WOULD BE DIFFERENT IF YOU WERE NOT DISABLED? hi advent Hi sherri resenting parents won't make things better...... sure I'd love to feel great like my brother and sister but it isn't mom and dad's fault. just the roll of the dice it would be alot different I have no idea carly: for me that is hard to say...I've done alot since I've been in the chair. it's hard to tell what would have been different. It would be easier getting a job. I would be able to drive stick shift...... and go to culinary school.... * Pei thinks that that is a hard question... although I can say I might not have been as focused on things. I know that sounded totally weird. I would become the female Mario Andretti my life would be way diferent *** medad has left #Disabled Maybe a better social life. Thanks for the info Mimi *** medad has joined #Disabled oh a lot but god made me like this for a reason, * Pei thinks that his school life would be better..... SOMETIMES I WONDER IF I WOULD ALREADY BE DRIVING IF IT WEREN'T FOR MY DISABILITY. my pleasure Jolene :o) I wouldn't have been fired..... I THINK ABOUT DRIVING ALOT... I'M NOT SURE WHY IT'S SO IMPORTANT TO ME. kit are you starting to drive * Pei is 14, and can drive any time now.... but i would need a special car because, Carly, driving means FREEDOM Why can't you drive, if I might be so nosy? I'm not able to drive because of seizures. My friend Mike is 34 and still doesnt drive NOT YET, NATE. lots of things would be better for me kit: because it gives you moor indepenace I am 27 (a little under a month ago :-) ) and don't drive...not the disability but because I've never been able to afford it. I am disabled because of work injury, I am 45 married with two kids. I hate not being able to work . One thing that would be better for me is I wouldn't have to worry about my medication affecting my children :o( GOOD POINT, MIMI. yes mimi, excellent point! that will be an issue for me too some day...... my RA medication is no good for fetuses I had to decide whether to have tham or not, and I decided to go for it the only bad thing i can think of that i wouldn't have met some good people understandable mimi AFTER LIVING WITH A DISABILITY, IF THERE WAS SOME WAY A DOCTOR COULD COMPLETELY CORRECT IT, WOULD YOU WANT THEM TO? In my case I wonder if being dead wouldn't be better for everyone involved. Depression is part of my disability yes.... Yes, 100% Carly: yes. totally absolutely! Yes Accepting disability is very difficult for me because I have always been a very active person and career oriented, and then cancer and brain tumor and seizures did me in. YES it's hard, huh, Jody? Definitely. YES!! Jolene- I am sorry to hear about that. yeah..... they have 'recommended' that I think twice about having children. thats hard YOU GUYS WILL PROBABLY THINK I'M WEIRD, BUT MY ANSWER WOULD PROBABLY BE NO. why??? hmmm even if I was told there was a spinal fusion or some other repair that could be done on my lower spine but it might not work I think I could accept that risk. mine whould be no to Explain, carly. I'M NOT REALLY SURE WHY... * Pei goes with maybe..... the meds I'm on..... what does it do, Jody? Why nate? they don't even know yet..... too soon to tell what effects it will have Lately I have been climbing the walls because I am housebound until my Neurologist gets my meds for seizures under control--no driving until he gives me the ok. again I am sorry i not sure eather but it whould chang my hole life Thanks. plus..... RA goes into remission when a woman is pregnant - something to do with the hormones..... as aa matter of fact i'm facing that now. I THINK IT'S BECAUSE THIS IS WHAT I'M USED TO. I DON'T THINK I COULD HANDLE THAT DRASTIC A CHANGE. and then after the birth usually experiences a full blown flare up that can last months.... Sometimes we don't have a choice! *** gordon4 has joined #disabled I've looked at corrective surgery but it was dangerous Carly, I think you'd adjust. Hi Gordon! I promised a counselor I was talking to in '95 that I'd be walking by January 2000 no matter what. now it's only 2 and a half years to go. dangerous how? Hi gordon! CHRIS AND I WERE JOKING LAST NIGHT... IF I SUDDENLY COULD FEED MYSELF, MY AIM WOULD BE OFF AND I WOULD BE THROWING FOOD OVER MY SHOULDER. something must come along soon! jody could you go off it while pregnant, and then go back on? lol well i could live a longer life without my MD Just droped in to say hello Maybe, Carly...... it makes a difference whether you have had it all your life or just 'acquired' it..... heya gordon :o) lol i had no idea....really. truly sorry YES JODY, I AGREE. yep... besides, Mimi - I rarely listen to my doctors now... why would I start with something like that :))) I honestly never realized how bad things really were. Sometimes I just don't pick up on things like that. cool jody :o) * phoenyxx never listens to doctors. :-) I can't go off mine, a seizure would be more dangerous for the baby than the medicine very true..... Having 'acquired' a disability to me is much harder than if I had been born with a disability. I wouldn't yearn for my former life as I do now. is anybody seeing me?? same here Jolene Mimi- were you on the medication when you had Felix? yes sherri :o) we see you sherri... *** James has left #disabled i do sherri yep, all the time, Simon, and he's fine :O) I see you sherri. ok guys he's a cute little bugger Simon Mimi: I think this time things will be ok too :-) Hi James. my medication quadruples the chances of my baby having Spina Bifida though sherri I see you here jody: yeah :-) yeah, I think so too, Simon. Thanks :o) no problem. :o) Is there anything you would miss, that you wouldn't be doing now or something you really like doing, that you don't think you would have discovered if not for your disability? YOU GUYS!!!!!!!!!!!!!!!!!!!! you guys..... :) WHAT, IF ANYTHING, DO YOU THINK LIVING WITH A DISABILITY HAS TAUGHT YOU? hmmmmmmm jinx * Pei wishes once and awhile everyone would call everyone else by their nicks, I have no idea who's talking to who :) JINX! darn lol I owe you a beer :o) yep Pei, kiddo..... we're just talking to everyone Humility ok, Pei, NP carly- I've learn to be a little more patient, and to know how to sometimes give myself a break when I'm really into something :-) i heard about a surgery that may help me. jody-: :) hehe. i just don't know everyones name :_ Learning to live with my disabilities has made me slow down and be more patient and tolerant of others. I have had to learn to rely on other people--which is still very hard for me. I hate relying on others!!! I've also in a weird way, to be more of an individual than I was before. Stop worrying about tomorrow. Take care of today. This is what I've done for 47 years. comes from making sure people see me and not just the chair. :-) patients me to jody Pei... it is kind of a free for all.. :) jody: I can relate a little to that. I'm great with video taping and editing but still need help with little things like carrying the camera or getting a ride to shoot someplace. Relying on others is degrading for me because i want to be independent again. I know that's not much to say . Jody, you and I r kindred spirits. I hate relying on others. that's a tough one for me *** stinkynut has joined #Disabled KNOW WHAT I'VE LEARNED? 'TRUST NO ONE.' KINDA LIKE THE X-FILES. good one carly :-) Hi Stinkynut! wow...how so Carly? the worse thing is when my baby sister sees me having trouble and gently steps in and gives me a hand. I diapered this kid!!!! whats up jolene You people have a lot to learn. Trust no one you are not thinking straight. i hate being so damn dependant on others Carly, you're being cynical! *** ShyGirl17 has joined #Disabled hi :-) i have to agree with gordon I've found that even though I have to rely on people, I still really don't trust most people--they say one thing and do another. Thanks Hi Shy :o) carly are you saying that it is hard to find people to trust how are you??? :-) MIMI: I'VE BEEN DEALT ALOT OF CRAP BY THE PEOPLE CHILDREN ARE ALWAYS TOLD THEY CAN ALWAYS TRUST. doing great :o) aman dopehat that's good :-) Hi Shygirl :o) For the record I feel like a total poser here right now. Despite my limitations I managed to 'salvage' alot of my old life, plus what I've accomplished since I've been in the chair. hi mimi Like who Carly? Hi, Shy! *** ShyGirl17 is now known as Mary i hate the medaphor 'Learn to live with the cards that we've been delt.' so have I Simon.... but I don't like the limitations that I do have now. that maked me mad :) In other words, I for the most part still get to do the things I want to do and I'm fairly independent except for needing a push sometimes or help carrying things. TEACHERS, SCHOOL OFFICIALS, COUNSELORS, ETC. but I can usually push myself in my chair. yep Hell, Carly..... when you i know exictly what you mean kit * Pei just got his chair and i'm still getting used to it. Limitations are so frustrating. Knowing that they exist is different from wholly accepting them. jody: I don't like my limitations either but I feel good about myself because of what I've done in spite of them. You're basing your life philosophy on bureaucrats? when you're a teenager you can't trust those people, even without a disability... *** Mary is now known as ShyGirl17 totally, Jody...no one can whether their disabled or not *g* er 'they're' I mean You have 4 more years on me Simon..... I just joined the ranks this year Jolene: I know. I still do get fustrated at times. but for some reason it's over the smaller details. jody: ah. didn't know that :-) I knew what you meant Mims.... ;) Is my not really accepting the fact that I'm disabled a sign of denial and also the reason I'm so depressed? it's a generation gap thing- trust no one over 30 ;_) but I am still getting used to things. does anyone know how to register your nick on here????? Jolene..... yep. * Pei was mad at his school physical theripist(sp?) because she was upset that i was getting a wheelchair soon, and she felt i should keep walking ('Use it or lose it', she said.) i think she felt that i should keep walking until i was crawling on my hands and knees i agree pei *** ShyGirl17 is now known as Mary pei- some people get mad at me for having this chair and not the old 40 pound chair I used in the beginning. pei what is your disability? CincyKid, I'm 52 and I still don't trust a lot of people! THAT'S RIDICULOUS! I THOUGHT PEOPLE WITH M.D. GOT WORSE THE MORE THEY DID. but, she's no longer with us. *** stinkynut has left #Disabled LOL j/k Pei..... tell her to go shove it. I have found witth a lot of PT's that it is an ego thing for them if their patients do well... instead of worse pei- two words: IGNORE THEM! :-) medad: muscular dystrophy. jody: you hit it on the head!