Disabilities-R-Us

Created by and for people with physical disabilities.

Handling Thanksgiving with a Disability

Nov 18, 1998

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  disabled
  ChanServ ([email protected])
  Mooooooo ([email protected])
  Secrets
  LoneWolf
  CindyB
  MsAmazin
  wheels
  eve
  anny1
LoneWolf: Hi and welcome to tonight's meeting
CindyB: As most of you know, we have been discussing healthcare for the last several
CindyB: weeks. Last week it was decided to extend the meetings to 2 hours because
CindyB: we have so much to discuss. This is a 2 part meeting. The first section
CindyB: will be on Handling Thanksgiving With a Disability and the second half will
CindyB: be devoted to our healthcare discussion. I reversed the order tonight
CindyB: becauseLily has some excellent tips for us and she has had the flu and
CindyB: cannot stay up late.
CindyB: 1. Lily, would you begin by telling us about the way you handle a holiday
CindyB: dinner?
*** max1 has joined #Disabled-RT
LoneWolf: Cindy-she isn't here
CindyB: I see
LoneWolf: wait a minute please
CindyB: ok
max1: thnx
*** wacky has joined #Disabled-RT
LoneWolf: Before we begin I would like for all of us to take a moment to remember our friend who died today
LoneWolf: Catee
*** Kim^^ has joined #disabled-rt
* Secrets bows her head in respect
LoneWolf: If anyone wants to join me in here tomorrow at 12 pm to remember her or to just talk I will be here
LoneWolf: Cindy, please reverse meeting order
CindyB: ok
CindyB: Healthcare
CindyB: I have sent multiple articles and URL's out. I hope that these have
CindyB: enlightened some of you. The latesr URL I sent gives a complete listing of
CindyB: US representatives, it is:
CindyB: http://apocalypse.berkshire.net/~ifas/activist/
CindyB: A sample letter to a representative is found at:
CindyB: http://congress.nw.dc.us/aarp/contact.html
CindyB: More info on finding your representatives and tips are found at:
CindyB: http://congress.nw.dc.us/aarp/elecmail.html
CindyB: Due to the fact that this is an election year, you may want to wait until
CindyB: Jan 1st to contact representatives that are newly elected.
*** atrpilot has joined #disabled-rt
wacky: judi lily is sic
LoneWolf: ok brian
CindyB: I'll go slow enough for everyone to be able to read
*** Kark has joined #Disabled-RT
LoneWolf: please repeat once
CindyB: Healthcare
CindyB: I have sent multiple articles and URL's out. I hope that these have
CindyB: enlightened some of you. The latesr URL I sent gives a complete listing of
CindyB: US representatives, it is:
CindyB: http://apocalypse.berkshire.net/~ifas/activist/
CindyB: A sample letter to a representative is found at:
CindyB: http://congress.nw.dc.us/aarp/contact.html
CindyB: More info on finding your representatives and tips are found at:
CindyB: http://congress.nw.dc.us/aarp/elecmail.html
CindyB: Due to the fact that this is an election year, you may want to wait until
CindyB: Jan 1st to contact representatives that are newly elected.
*** MsAmazin has left #disabled-rt
CindyB: 1. Cindy, would you please review the info on the MiCASA legislation?
* Secrets raises her hand, is the Healthcare going to be
wacky: yup
CindyB: MiCASA stands for The Medicaid Community Attendant Services Act. For
CindyB: decades, people with disabilities, both old and young,have been demanding
CindyB: alternatives to nursing homes and large institutions for people with
CindyB: developmental disabilities.
CindyB: Thats were MiCASA comes in. CASA would establish a national program of
CindyB: community-based attendant services for people with disabilities, regardless
CindyB: of age or disability. Our current system has an entitlement to institutional
CindyB: services but no entitlement to community-based attendant services.
CindyB: CASA is based upon these basic principales:
CindyB: Maximum control of the consumer to select, manage and control theirattendant
CindyB: services.
CindyB: Attendant services must be community-based, in other wordsnon-institutional.
CindyB: Eligibility based on functional need not medical diagnosis,disability andor
CindyB: age.
*** max1 has left irc (Ping timeout for max1[cx13340-a.escnd1.sdca.home.com])
CindyB: Services must be available in-home and other locations.
CindyB: Attendant services must be available 24 hours a day, 7 days a week.
CindyB: Back up and emergency attendant services must be available.
CindyB: Program must allow for co-paycost sharing for people with higherincomes.
CindyB: Delivery of service must include vouchers, direct cash payment,individual
CindyB: provider model, as well as consumer directed agency model.
CindyB: Health related tasks can be delegated to or done by unlicensed personal
CindyB: attendants.
CindyB: tell me if I'm to fast for anyone
CindyB: Voluntary training should be available for consumers.
CindyB: Attendants should receive a livable wage and benefits.
CindyB: Attendant services should be based on an agreed upon individualservice plan.
*** max1 has joined #Disabled-RT
*** cripfemme has joined #Disabled-RT
wacky: ie. health benifits
CindyB: ADAPT, The American Disbaled for Attendant Programs Today, believes the
CindyB: above principles should be incorporated as minimum standards in any national
CindyB: attendant services program passed by Congress and attendant programs run by
CindyB: the states.
CindyB: ADAPT is challenging Congress and the Administration to support CASA and to
CindyB: make community-based attendant services areality in this country.
*** Secrets has left irc (Another day, another smile, it was soooo worth it!)
CindyB: Any one welcome to discussion before question 2
LoneWolf: what is the status on this bill?
wacky: think floors urs Thindy
CindyB: From al I've read it is still at a stand still
LoneWolf: I believe the status is pending
CindyB: yes
LoneWolf: Before we go on did everyone read Wacky's sample letter?
eve: question
LoneWolf: yes
Kim^^: no sample letter
eve: how would this effect people working for an agency whoi are doing home care?
wacky: it gives them options eve
Kim^^: such as?
eve: 'does this give them benifits for the worker?
CindyB: all the options stated above should be agreed upon if the bill goes through
wacky: private one one one clients or multi clients
wacky: yes eve
LoneWolf: example
eve: thx
LoneWolf: Carly has her fiancee as an attendent
LoneWolf: he gets reimbursed for that
wacky: not a good mix
*** rowdy has joined #disabled-rt
LoneWolf: beside the point
*** atrpilot has left irc (atrpilot)
LoneWolf: anymore questions?
wacky: not really there doing it so ends meet
LoneWolf: IC
LoneWolf: #2 Cindy
CindyB: 2. Do we need to go ahead and send a letter in on this piece of
CindyB: legislature?
wheels: I live in Washington state and here there is a program called COPES and pays aides what works out to be $1.75 a hour
LoneWolf: ridiculous
wacky: I have sample
LoneWolf: ok wacky
CindyB: baby sitters for little kids get paid more than that
LoneWolf: speak up guys
wheels: spouses cannot be paid as aides
rowdy: sorry, I don't know what we are talking about
CindyB: I feel the more letters we send in, the better the odds of the bill being passed in our favor
LoneWolf: whether or not we need to send letter to Congressmen on MICASA
wacky: working on it
eve: the lady who does the houswork for us, gets five thirty no benifits no medical coverage for her and acency treats her bad
*** Kark has left irc (Kark)
CindyB: thats sad!
LoneWolf: another reason to be verbal
LoneWolf: For anyone not on the mailing list wacky is going to paste in the sample letter
CindyB: good ide
CindyB: idea
*** atrpilot has joined #disabled-rt
wacky: ok have it
wacky: (name here)
wacky: (home address placed here)
wacky: Attention:
wacky: Senator. Barbara Boxer
wacky: California State Senate
wacky: Sacramento, CA
wacky: Dear Senator,
wacky: I am writing to you in support of S.879 and HR.2020 otherwise known as MiCASA:
wacky: The Medicaid community Attendant Services Act.
wacky: Our current method of entitlement of Medicaid allows for Att
wacky: (name here)
wacky: (home address placed here)
wacky: Attention:
wacky: Senator. Barbara Boxer
wacky: California State Senate
wacky: Sacramento, CA
wacky: Dear Senator,
wacky: I am writing to you in support of S.879 and HR.2020 otherwise known as MiCASA:
wacky: The Medicaid community Attendant Services Act.
wacky: Our current method of entitlement of Medicaid allows for Att
*** anny1 has left #disabled-rt
wheels: it is great to live in your own home but its next to impossible when there is only low pay for aides with no benefits, insurance, and relief workers
wacky: ok tisnt working
LoneWolf: Maybe you can resend to list tomorrow
LoneWolf: #2
CindyB: that was 2
LoneWolf: #3
wacky: any one wanting a copy email me at [email protected]
CindyB: 3 is lenghty
CindyB: I'll go slow
LoneWolf: go on
CindyB: 3. The second is the SSI-ReDefinition of Disability, Cindy?
CindyB: Updated October 26, 1998.
CindyB: ISSUE:
CindyB: Committee's Human Resources Subcommittee has drafted amendments to the SSI
CindyB: disability program that would cut off aid to many people with disabilities,
CindyB: especially adults with mental disabilities and children.
wacky: I kept it short I swear
CindyB: House Subcommittee Plans to Narrow Access to Disability Benefits
CindyB: 1.Adults and Children with Mental Impairments Would Be Hurt
CindyB: 2.Medical Evidence vs. Functional Evidence
CindyB: 3.Individuals Who Live Together Would Lose Income
CindyB: 4.Stricter Criteria for Children
CindyB: 5.Prospects for Action
CindyB: Action Needed Now!
CindyB: Contact members of Congress (whether or not on the Ways and Means Committee)
CindyB: to head off the entire package of cuts in federal disability programs.
*** atrpilot1 has joined #disabled-rt
wacky: ok the SSI def of Dis is: any impairment that greatly impeeds the major tasks of dialy living
CindyB: which leads us to question #4
*** Kark has joined #Disabled-RT
CindyB: 4. Same as question 2
*** atrpilot has left irc (Ping timeout for atrpilot[centralia49.midwest.net])
Kim^^: ?
atrpilot1: no
LoneWolf: why?
CindyB: Should there be a letter sent in reguards to the SSI?
LoneWolf: Charrlie?
atrpilot1: yes
LoneWolf: why no?
eve: how would this effect a married couple? we are already getting less because we live together
rowdy: oh well, maybe some other time, sheesh
*** rowdy has left #disabled-rt
*** cripfemme has left irc (Read error to cripfemme[mid-qbu-nqy-vty55.as.wcom.net]: Connection reset by peer)
LoneWolf: I believe it would ee
wacky: then u not affected
LoneWolf: don't think so Bri?
wacky: this is for ppl who not already cut
CindyB: seems to me, the more in the household,the more you should be able to receive..
*** Kark has left irc (Kark)
wacky: actually what they do is lump the sum
LoneWolf: wacky could you elaborate
Kim^^: logic in government:)? doesn't happen
wacky: sure in instance where comple is married
atrpilot1: a men kim
wacky: the combined inc is cut aprox 200 and then lumped into one check
LoneWolf: but passing this bill would change that?
CindyB: what would it be if you were living seperately then?
wacky: but if two ppl not married live together is not combined
CindyB: Oh...
*** Xova has joined #disabled-rt
*** Driveshaf has joined #disabled-RT
wacky: full amount of one disable physically is abt $650.00
*** quad_fem has joined #disabled-rt
eve: how can we live if we are cut by two hundred? would this be two hundred more than what we are geting now?
wacky: but a loop hole can always be found
LoneWolf: but how would this bill effect that?
CindyB: how?
wacky: say two ppl living together under same roof and state and fed attempts cut?
wacky: u just regester as two seperate house holds
wacky: simple
LoneWolf: married?
*** Xova has left #disabled-rt
CindyB: so if you get $650. per month, and your rent is 400. per month, and you have meds, and bills, how does one eat?
wacky: Eve u and adam are exemt
*** haa has joined #disabled-rt
LoneWolf: back to the bill
wacky: u dont
CindyB: pathetic
LoneWolf: HOW DOES THE BILL EFFECT THIS
wacky: and dont tell em about food pantries either or they count against u
eve: married combined amount is 741 dollors. would we be cut more?
CindyB: OK....as LW stated
LoneWolf: eve is asking about bill
CindyB: HOW Does The Bill Effect this??
LoneWolf: wacky?
LoneWolf: and Cindy?
wacky: married couple already cut so they are exempt from new bill this is for un married couples
wacky: no eve u stay same
CindyB: Well the SSI bill states it is for cut income
LoneWolf: ??
CindyB: If the SSI bill is passed, the won't allow cut income on individuals who
CindyB: live seperate or together
wacky: what they are trying to do is spend down the amount they cash out
LoneWolf: elaborate please
wacky: if this passes it will affect couples who are unmarried and live together
LoneWolf: for bad?
wacky: no one else
wacky: yes for the worse
*** quad_fem has left irc (Leaving)
LoneWolf: group-for or against
wacky: agianst the change
CindyB: so we need to send in our opinions to the legislators? Correct?
wacky: yes cindy
Kim^^: yes
LoneWolf: but the question is are we for or against this bill?
CindyB: all agreed?
wacky: agianst SSI bill
LoneWolf: Cindy-we need to know what we are wanting
wacky: for MiCASA
wheels: aye
LoneWolf: for Micasa not for SSI
CindyB: What is your opinion on both bills LW?
*** atrpilot1 has left #disabled-rt
LoneWolf: Charlie?
LoneWolf: eve?
wacky: helen what u think?
LoneWolf: Dony?
haa: Yes, I want MICASA
LoneWolf: SSI?
eve: for micasa, but against ssi bill,
LoneWolf: Kim?
LoneWolf: max?
Kim^^: micasa yes ssi no
LoneWolf: wheels you said aye to which?
CindyB: If we all send in letters for or against these bills, just how long will it take before we get any effects?
LoneWolf: we can send in letters or e-mails
LoneWolf: will prob get automated response back
wacky: with email we will get a response quickly but will be form letter
LoneWolf: hey
LoneWolf: idea
wacky: phone calls work best
wacky: go on....
LoneWolf: what if we drafted a group letter on both issues then each of us send it to our legislatures?
wheels: ssi=no, micasa=yes
CindyB: thats a good idea
wacky: um not really let me show u why
eve: that is a good idea
CindyB: why Bri??
LoneWolf: we can sign our name and put something like member of disabled online group
LoneWolf: why?
wacky: if we all sign same letter fewer letters then less response
eve: that is true
LoneWolf: no all send same letter-separretly
CindyB: not if we all send copies to our own legislators?
LoneWolf: Kim and I would send to Ky
*** Driveshaf has left #disabled-RT
wacky: best trick ( ive done this b4) is to flood offices whih a lot of letters
CindyB: and what happened wacky?
eve: we should also send letters to news papers
LoneWolf: we decided against that last week
LoneWolf: ok
LoneWolf: can do
wacky: call all ur gimps can be a basic letter volume counts here
wacky: ppl listen
*** cripfemme has joined #Disabled-RT
LoneWolf: wacky get us a final draft we can use for both bills and post to list-ok?
LoneWolf: each of us can copy sign and send
wacky: ok will do
eve: contack independant living centers and see what they are doing in ths regard
wacky: ok
LoneWolf: helen I would really like to hear what you are thinking
*** max1 has left irc (max1)
wacky: good idea EVe
CindyB: everyone agrees on all these wonderful ideas, but when??
LoneWolf: this week?
wacky: helen????
LoneWolf: next week is Thanksgiving-many will be off
CindyB: true
LoneWolf: everyone agree by Fri?
wacky: i can post both on list tmw
haa: yes, i am here, I am for micasa and against ssi
LoneWolf: any other thoughts on the subject?
*** RealAnna has joined #disabled-rt
cripfemme: i was off a while, wonderful ideas for what?
eve: before thanks giving
wacky: yea govt sux
RealAnna: evening everyone
LoneWolf: we are planning a letter to legisators this week
LoneWolf: Ok before we move on-anyone not on the list?
wacky: cf isnt
haa: I have a ?
RealAnna: i don't believe im on any list
CindyB: it would be nice if we could find several disabled people from the states to sign the letters as well.
wacky: go helen
LoneWolf: ok haa
cripfemme: m2, not on list
cripfemme: i can help with PA folks
CindyB: great
LoneWolf: please go to web site http://member.tripod.com/~disabled
haa: Why do we need to do it this week and not after Thanksgiving?
*** wheels has left irc (Ping timeout for wheels[annex248-15.bmi.net])
wacky: ok martina u know how to do this
cripfemme: nope
eve: i taped into a place where i mighgt find disabled people in other states but i cannot get it out before kill a turkey day to all those people
CindyB: you think we need more time Helen?
Kim^^: who is helen?
LoneWolf: ok-week after Thanksgiving?
LoneWolf: haa
Kim^^: k
wacky: sure u know how to write ur legistslators
wacky: will send u a sample martina
*** x[NiTrO]x has joined #Disabled-RT
LoneWolf: ok lets move on to a brighter subject
cripfemme: thanks, wack
CindyB: Question 5 was wacky's sample letter
RealAnna: wacky why not post an example on the web site
LoneWolf: Lily had some tips for us and she isn't here so I will fill in as Lily
wacky: ill ask mooooooooooooo
RealAnna: k
LoneWolf: good idea Real Anna
*** In- has joined #Disabled-RT
LoneWolf: Cindy paste away
* wacky hands wolfie sheeps clothing
CindyB: ok LW, you are Lily..
CindyB: As most of you know, we have been discussing healthcare for the last several
CindyB: weeks. Last week it was decided to extend the meetings to 2 hours because
CindyB: we have so much to discuss. This is a 2 part meeting. The first section
CindyB: will be on Handling Thanksgiving With a Disability and the second half will
CindyB: be devoted to our healthcare discussion. I reversed the order tonight
CindyB: becauseLily has some excellent tips for us and she has had the flu and
CindyB: cannot stay up late.
CindyB: 1. Lily, would you begin by telling us about the way you handle a holiday
CindyB: dinner?
LoneWolf: uh didn't need that first part
*** In- has left #Disabled-RT
wacky: ooh
LoneWolf: ok
CindyB: for those who came in late
wacky: guess I am out
LoneWolf: Lily has devised a plan that is great
RealAnna: thanks for the update
LoneWolf: she starts several days before a big dinner or get together
LoneWolf: sets table one day
LoneWolf: does salads one day
LoneWolf: cooks meats one day
LoneWolf: saves veggies for actual day
LoneWolf: ANYONE ELSE HAVE A GOOD PLAN
LoneWolf: oops
CindyB: 2. How do the rest of you handle Thanksgiving?
CindyB: lol
wacky: I dont
wacky: no reason
cripfemme: join/ #disabled
LoneWolf: wacky what do you do on holidays?
haa: We call Waiters On Wheels and voila turkey dinnner appears. :)
wacky: its /join #Disabled
RealAnna: that sounds like a good plan, but i cant even keep up with laundry let alone do a big dinner - and im really depressed about it - for last 16yrs of my 18years of married life i had thanksgiving dinner with both families at my house now i cant do it
eve: i have an idea. ask everyone who is coming to bring a dish of some type of food and coordinate with you what it is
cripfemme: thanks
wacky: i heat up my dinner like any other night
Mooooooo: cripfemme. click the link at the top of the page
CindyB: my grandmother has hers catered also
*** cripfemme has left #Disabled-RT
LoneWolf: RA could you do like eve suggested?
RealAnna: the problem isnt the food - it's getting the house ready and all the confusion and too much on my feet
wacky: no reason to see family
*** ^Raven^ has joined #disabled-rt
LoneWolf: that's my problem RA
LoneWolf: Cindy tell them our set up
CindyB: 3. Cindy, would you share with the group our family's way to handle big
CindyB: dinners?
LoneWolf: yes
CindyB: Thanksgiving at the Burch's: Due to the fact that Judi is disabled and can't
LoneWolf: They are all at my house to
CindyB: tolerate being on her feet or out of her bed for a long period of time, the
CindyB: children and the childrens spouses do Thanksgiving at the Burch's. Judi's
CindyB: husband is allergic to poulty, so he usually cooks a ham every year.
haa: RA have you heard of Maids O n Wheels?
CindyB: . Do to
CindyB: the turkey lovers in the family, Cindy cooks the turkey (and chases her
CindyB: father-in-law around the kitchen trying to rub turkey on him.) Jennifer,
CindyB: Judi's oldest child usually volunteers to cook vegetables and dessets, but
CindyB: bless her heart, she just isn't a good cook, therefore we try and persuade
CindyB: her into bringing more simple items: napkins, rolls, and other not so
CindyB: perishable items
LoneWolf: lol
RealAnna: between both hubby and my families over 25 people - just a change in tradition i guess
wacky: lol
CindyB: The middle son, who isn't married, gets to bring the
CindyB: soda's for everyone. Jennifer manages to sneek in a pretty nice looking
CindyB: Chess Cake, and as her brothers taste it, they want to know why she put nuts
CindyB: in it this year?? There were no nuts in it, just that crunchy...LOL We
CindyB: always manage to have a wonderful feast between us all, and we always give
CindyB: thanks to the Lord for what we have. After we eat, everyone pitches in to
CindyB: clean up all the mess. Try and imagine 6 adults on foot, 7 kids running
CindyB: between and under the adults feet,, and a lady in a mobility cart trying not
CindyB: to run over the
CindyB: adults and kids
CindyB: But it is a blast!
eve: sounds wonderfullllllllllllllll
CindyB: it is Eve
LoneWolf: RA it liked to killed me not to do it I always had before
RealAnna: same here LW
LoneWolf: even snuck up in middle of night and cooked Christmas one year
wacky: i envy u ppl
CindyB: SHe feels guilty at not helping..but we try and not let her feel guilty
LoneWolf: wacky come on honey-always room for more
RealAnna: cant ask one side of family to invite other side - so when i did for everyone it was a great time
CindyB: ALWAYS
eve: our family isa going in different directions
LoneWolf: RA can still be just let everryone else do the work
wacky: if i could fly there i would judi
CindyB: It would be great to have you Bri
LoneWolf: eve what do you do if family in diff directions
RealAnna: i cant ask everyone else to clean my house - iron linens - set out china etc...
eve: eve always gets her husband adam to wash the dishes afterwards
LoneWolf: yes you can RA
LoneWolf: I did
LoneWolf: and I lowered my standards a bit too
Kim^^: i just skip thanksgiving
eve: ra, you can ask anyone to do anything
haa: RA, I have used used a service called Maids On Wheels,,,work fine and not expensive.
eve: as long as you are all together
*** x[NiTrO]x has left #Disabled-RT
LoneWolf: good idea haa
RealAnna: i wish LW - and it's not that I care about anyone helping - it's just that since injury no one other than hubby or one sister has really offered to help me ever - so im kinda mad
RealAnna: ive thought about that - but money is tight right now
CindyB: Next question is a great one for you all then
LoneWolf: RA I learned that when you are able bodied you have lots of friends-when you aren't they disappear
*** Ray-1 has joined #Disabled-RT
eve: that is true
RealAnna: good question - and that is so true
LoneWolf: my dad used to order plates from his fav resturant
RealAnna: you cant dance, you cant shop, you cant pick up their kids from school, you cant you cant you cant - so they dont
*** Ray-1 has left #Disabled-RT
LoneWolf: they were good
CindyB: A lot of them cook up good meas on the holidays
wacky: hey! I DANCE!!!!!!!!!!!!
CindyB: lol
RealAnna: much better than me lol
LoneWolf: RA don't dwell on can't
LoneWolf: think can
CindyB: 4. How many of you experience exacerbations of your diseases as a result
CindyB: from holiday preparation?
RealAnna: i know - usually very positive - but the friend thing hit sore spot :)
wacky: donno
LoneWolf: for me too
LoneWolf: it hurt for a long time
wacky: family is my sore spot
LoneWolf: yes wacky I'm sure
haa: Holidays and Vacations make me better.
LoneWolf: really haa
LoneWolf: how so?
eve: ask your family for sauggestions. RA on how they can make thankjs giving happen for everyon
wacky: Im gonna go
LoneWolf: I just told mine I couldn't do it
wacky: see ya all
LoneWolf: love ya bri
RealAnna: eve ive tried - but they all have made other plans now - so going to husbands aunt's house - will be just 6 of us - very different
CindyB: By dear
RealAnna: bye wacky
wacky: bye enjoy
LoneWolf: So much changes when we become disabled
*** wacky has left #Disabled-RT
RealAnna: yes takes alot of adjustments
LoneWolf: haa enjoys change in routine
haa: Holidays...turn me on and always have...Holidays are a time to give and see friends.
haa: and Family
eve: for us we are alone on holidays my sisters take my mother and it is depressing
LoneWolf: you get depressed over Thanksgiving dinner
RealAnna: i agree - am excited about Christmas and Thanksgiving - but mourning the old ways
LoneWolf: me too
eve: i am tooooooooooooooo
*** Kim^^ has left #disabled-rt
LoneWolf: I still get very depressed and my disease does exacerbate
RealAnna: yes i have more pain the more i try to do - so it's a vicious cycle
LoneWolf: Cindy knows
CindyB: yes, very hard!
LoneWolf: RA I'm no expert but I learned something this summer when I came close to kicking the bucket
CindyB: And I know it is hard to sit back and relax and let others do it all
RealAnna: you know you want people to see and you want to do it just for yourself to do as much for yourself as possible, but it seems that the more you do then problems set in and any progress you make set you backwards - what to do
LoneWolf: I love my family
RealAnna: family is everything to me LW - valuable lesson I agree
LoneWolf: they don't care about homemade choc pies as much as they want mom and grandma around for a while
CindyB: a long while!
LoneWolf: very easy to die-very hard to live
RealAnna: proud of you LW
eve: it takes a lot of courage
LoneWolf: don't be I can be a real b_____
LoneWolf: cry and sulk even
CindyB: she's a fighter, because she loves her family so much! She knows we all need her as well as she needs us!
RealAnna: lol big b_____ here too lol
LoneWolf: how long have you been disabled?
RealAnna: since August/97
RealAnna: and you LW
LoneWolf: really down and out?
LoneWolf: about 5 years
LoneWolf: on and off about 12
LoneWolf: or 15
LoneWolf: just remembered how old I am
CindyB: lol
haa: about 20 years
RealAnna: i guess if i looked at it - mentally have more good days than bad - but they physical is more bad than good - does that even things out?
LoneWolf: takes adjustment right haa?
LoneWolf: not really
LoneWolf: physical is draining
RealAnna: im getting used to the adjustments - but i dont think everyone else is - that is probably the real problem
LoneWolf: ya have to learn to be honest
RealAnna: honesty is the only place to be
LoneWolf: ever say yes when your body is saying no?
eve: excuse for a while but eve has to go to the little girls room
LoneWolf: ok
RealAnna: everyday LW
haa: Takes a bit of work in getting used to it...and along the way some stuff has just got to go. Others do the household chores,shopping,running errands etc....I do shopping by catalogues :)
*** eve has left irc (eve)
LoneWolf: well RA-QUIT
RealAnna: haa - just finished over half of Christmas from catalogs - love them
LoneWolf: when body says no-son't do it
CindyB: The main thing is, try and quit worrying about what everyone else tinks, and just be happy..
CindyB: thinks
CindyB: worrying will stress you out for sure
haa: RA, I am an addict for years now...I have done all of XMAS by Catalogue
haa: addict for catalogue shopping that is.
LoneWolf: Cindy does most of my cleaning and shopping and I hate it-she has 3 1/8 kids a husband and a busy schedule
RealAnna: you know what is amazing is the one person in my life that detects when i need to rest or just cant do it is my 12 year old daughter - if life is worth celebrating then she brings me true joy
LoneWolf: that's great
CindyB: I remember it taking LW a while to come out of her shell, worrying about asking others to get her a drink, or food, or to the potty, she'd sit there until she was dry as cotton..didn't want to impose
LoneWolf: this summer and fall I just had to give it up
*** wheels has joined #Disabled-RT
CindyB: SHe has learned to be honest and has found out, we realy don't mind
LoneWolf: it takes a while RA
haa: RA, I have 12 year old daughter too, and she makes the catalogues for me...she is so afraid I will forget to buy for her :):)
CindyB: but we care givers can't help, if we don't know!!
LoneWolf: Actually, helen helped me a lot without realizing it
RealAnna: lol yes they make sure alright - mark the pages lol
haa: marks the catalogues
RealAnna: rofl
haa: lol
RealAnna: question
LoneWolf: any other holiday suggestions?
LoneWolf: shoot?
LoneWolf: go for it RA
RealAnna: has anyone ever had problems with the good body parts, for over compensating - im now having problems with good foot and that scares me
CindyB: My Grandmother can't get out, so she gets Christmas cards for al the grandkids and puts money in them so they can get what they want
LoneWolf: yes big time just talked to PT about it today
LoneWolf: she called it overuse syndrome
RealAnna: i need to get to doc's soon
haa: RA, what is your disability?
CindyB: kind of like straining a good eye when the other has a patch on it?
LoneWolf: she pointed out that overuse can cause permanent damage
RealAnna: i had crush injury to right foot
LoneWolf: ouch
RealAnna: need wheelchair for any distance, but mostly use cane or crutches at times
LoneWolf: RA my prob right now is computer
RealAnna: computer lol how is that
LoneWolf: I'm losing my range of motion in hands, wrists and neck
CindyB: lol
LoneWolf: computer is beside bed
RealAnna: oh not lol - from osteo?
LoneWolf: either I turn to the left to see screen or sit on side without support
LoneWolf: I have rheumatoid
RealAnna: can you get some other type of set up
LoneWolf: also degenerative disk
RealAnna: i was just reading about that today
LoneWolf: bulging disk in neck and she said I could easily herniate it with what I am doing
RealAnna: yes your straining to much
LoneWolf: so she wants my husband and sons to build a sing out tray for monitor
LoneWolf: swing
RealAnna: what about voice command set up
LoneWolf: I have that
RealAnna: cool
LoneWolf: been retraining todat in fact-after I got chewed out for not using it
CindyB: Oh know!
CindyB: she fussed?
LoneWolf: big time
RealAnna: no more fussing - :) get comfortable with it
LoneWolf: anyway does anyone have any other ideas on holidays?
CindyB: I'm going to call it a night..enjoyed the meeting.
RealAnna: use gift bags
*** CindyB has left irc (Leaving)
RealAnna: save on wrapping
LoneWolf: that's good
LoneWolf: I do all cards on computer
LoneWolf: can't type much anymore
*** wheels has left #Disabled-RT
LoneWolf: write not type
RealAnna: well ive cut back on cards
RealAnna: the writing has got to be very difficult - choose a nice script font and your on your way
LoneWolf: well, its late so meeting is over
haa: We give money more and more...Cool XMAS cards with money in them...kids love 'um.
LoneWolf: yes
LoneWolf: saves shopping
RealAnna: thanks everyone appreciate all your support :)
LoneWolf: ur welcome
LoneWolf: thank you all for coming
RealAnna: does anyone know pattio
LoneWolf: yes
END