location

[Guest guest]

xklm,I'm in Northern Utah.

Cheryl

[Guest guest]

Donna are you new to the group? If so welcome. I don't know if anyone is

close to you but we all are from everywhere and would be happy to get to

know you also. Again welcome, my name is Patty also use Melt

location

> Hi everyone,

>

> I was curious if anyone on this list is from the Nashville, TN area? If

so,

> please email me if you'd like.

>

> Thanks,

>

> Donna Higgs / Nashville, TN

>

>

>

[Guest guest]

I know TK is in Massachusetts.

>

> Hi, was just wondering, who in here besides me is from Massachusetts?

> Thanks,

>

>

[Guest guest]

I'm sorry to report to the group members from the commonwealth of Massachusetts

that I am not from that state. While there are many similarities between

Brooklyn, NY and Brookline, MA, I am a proud New Yorker!

T.K. Small

> >

> > Hi, was just wondering, who in here besides me is from Massachusetts?

> > Thanks,

> >

> >

>

[Guest guest]

I was born in Massachusetts, love it there! But I currently reside in sunny

state of Florida.

Sent from my iPhone

On Jun 26, 2011, at 11:17 AM, " teek11201 " <thomas.small@...> wrote:

> I'm sorry to report to the group members from the commonwealth of

Massachusetts that I am not from that state. While there are many similarities

between Brooklyn, NY and Brookline, MA, I am a proud New Yorker!

>

> T.K. Small

>

>

> > >

> > > Hi, was just wondering, who in here besides me is from Massachusetts?

> > > Thanks,

> > >

> > >

> >

>

>

[Guest guest]

I'm in East Wareham, where are you?

Regards,

Patti

[Guest guest]

I lived in Mass until recently, I too, currently reside in Florida as well.

Etsy Store: http://www.etsy.com/shop/ssegerter

My Store: http://www.zazzle.com/SunshineTreasures*

My Blog: http://sunshineisdarkness.blogspot.com

My Portfolio: http://www.behance.net/simones

________________________________

From: Robyn Silva <robynesilva@...>

" " < >

Sent: Sun, June 26, 2011 12:34:45 PM

Subject: Re: Re: location

I was born in Massachusetts, love it there! But I currently reside in sunny

state of Florida.

Sent from my iPhone

On Jun 26, 2011, at 11:17 AM, " teek11201 " <thomas.small@...> wrote:

> I'm sorry to report to the group members from the commonwealth of

Massachusetts

>that I am not from that state. While there are many similarities between

>Brooklyn, NY and Brookline, MA, I am a proud New Yorker!

>

> T.K. Small

>

>

> > >

> > > Hi, was just wondering, who in here besides me is from Massachusetts?

> > > Thanks,

> > >

> > >

> >

>

>

[Guest guest]

Ooop! That's right. My bad.

> > >

> > > Hi, was just wondering, who in here besides me is from Massachusetts?

> > > Thanks,

> > >

> > >

> >

>

[Guest guest]

New Bedford. It's bad here... Do you live independently?

>

> I'm in East Wareham, where are you?

>

> Regards,

>

> Patti

>

>

>

[Guest guest]

I'm just askn because I am very unhappy in my current living situation & was

thinking maybe someone out there w/the same disability as me might like to be

roommates.. I mean not right away, we could chat a while 1st & stuff. But just

the concept in general. Thats y i was lookn for ppl from MA.

>

> I'm in East Wareham, where are you?

>

> Regards,

>

> Patti

>

>

>

[Guest guest]

Hello ,

It might be helpful for people reading your post about your living situation, if

we knew what was making you unhappy. People might be better able to offer

suggestions or advice. For example, is it lack of adequate attendant care,

housing, etc.. I'm sure that someone in this group has had a similar experience

and would be willing to be helpful.

Hang in there,

T.K. Small

> >

> > I'm in East Wareham, where are you?

> >

> > Regards,

> >

> > Patti

> >

> >

> >

[Guest guest]

How on earth did u manage to get 24hr pcas!? I'm having a heck of a time

getting enough hrs, I get 89hrs per week + overnights (2hrs per night x 7

days = 14hrs) so total = 103hrs per week, but it just isnt enough. I

recently put in for an additional 10hrs per week for eating & I'm awaiting

Mass Health's decision. That will raise me to 99hrs per week + overnights,

IF they approve it.. I have a 21 day wait.

I'm also having a horrible time trying to hire pcas! People either don't

show up for interviews, or the 1s who do show up, are just plain scary &

there's no way I'm hiring them. I'm 32yrs old, & I've been hiring pca's

since I was 15. I've had quite a few colorful 1s over the years, some good,

some bad, some crazy, lol. But it's never taken me this long to find a half

way decent 1, I been trying since Jan. I had a really good pca for 5yrs.,

she always said she loved the job, & she'd NEVER quit, & then in Jan she

left me flat, just did not show up for work 1 day, & then TEXT me to say she

quit!

This has been a rough time for me, I've had to depend on my family to help

me out all these months, & while they are good enough to help & not leave me

stranded, they treat me like I'm 12yrs old. I'm 32, I'm very independent

minded, I have a Bachelor of Fine Arts Degree in Graphic Design from UMass,

I had a full-time job at an Independent Living Center for 9yrs, until I

recently started having a serious respiratory problem back in Oct. which has

forced me to cut back to doing only 10hrs a week of work from home (but they

are still holding my position for me, they want me back). While at the ILC

I've ran administrative pilot programs, worked on organizing a special

program for youth with disabilities, worked directly with consumers

providing skills training, peer support, advocacy- both individual &

systemic, I've worked with all people, of all ages, with all disabilities,

I've done PR work, I did much of their graphic design work.... I could go on

& on, I had major responsibilities on my job. I saved up, paid off my

student loans & bought myself a van. I had a bf, kind of still have him,

kind of, except I have been unable to see him all these months because my

family disapproves, & I'm living in my mothers house & he's not allowed to

come here, & I'm not feeling well enough now to really go out & see him, &

even if I was, I'm stuck with my mom & aunt for pcas, so that wouldn't be

happening.

& as angry as I am at my last pca for leaving me, a lot of it was my mothers

pushing, she really didn't like me having her, she was young, in her 20's, &

basically having her allowed me my freedom & independence, & allowed me to

be w/my bf. My mother knew it & hated it, so she picked at every little

thing the girl did, said everything she did was wrong, blamed her for stuff

she didn't even do (like making messes in the house). She kind of pushed her

out the door. Both my aunt & my mother are very jealous & don't like it if I

like other pcas or other people get to close to me, they act very

competitive about it.

Besides that my mother acts very possessive of me, I know she cares, but it

goes beyond that, she wants to control me & my life. & it's not like I've

never been away before, when I was a kid mother really pushed me to be

independent, to go out to school, to camp, & when I got to be 14yrs old to

go live at the Mass Hospital School 50mi away from her, I lived there from

age 14 - 18, & then she forced me at 18 to live on campus at UMass, even

though I totally felt unprepared to do it. I lived there for 2yrs, & then,

as she puts it (I failed) & had to move back home. Well, while living on

campus at 18, having no knowledge of IL Services, I had major pca issues. If

it was today, it wouldn't happen, because I know my resources, I would get

myself Case Management, & I would prepare better before hand, find myself a

live-in pca, etc., plus I act more responsibly now with pcas than I did at

18. But because I tried living independently once & " failed " she's dead set

against me trying it again. & she's also against me having any IL Services

here, if I had Case Management Services right now, I'm sure I would have at

least 1 replacement pca by now (long time ago actually), but she's dead set

against that too. Whenever I mention getting services, she gets angry & says

" I PROVIDE U WITH CADILLAC SERVICES, UR UNGRATEFUL, & U'LL FIND OUT WHEN I'M

DEAD HOW MUCH I DO FOR U! " so I can't even talk about it. I am really up

against a lot here..... & it's crazy, because as a teen I had all the

freedom in the world, dated as I wanted & all, & now I can't, I'm not

allowed.. & now as of lately mother is talking about wanting to retire early

& work for me full time... oh joy! I pray everyday that doesn't happen.

Right now aunt stays with me pretty much all day & mom just nites &

weekends. I think she kind of hopes we won't find another pca...

Since Oct. I've been having a restricted feeling when I breath, I have

tightness in my chest, & sometimes pain. I also have a whistle when I

exhale. I've been through numerous tests, & Dr.'s can't figure anything out.

They've suggested it might be a mucus plug, but aren't sure. It's a longer

story, I can elaborate more later, I'm just starting to feel really

exhausted from all this writing..

But, if my breathing ever gets back to normal, I'm seriously looking to get

out of this situation. I just need to find some really good people to help

me.

~

On Wed, Jun 29, 2011 at 12:46 PM, Patti Healey <pidgie508@...> wrote:

> Yes I live indepently with 24 hr pcas and I live with my fiance. You ?

>

[Guest guest]

Thanks, big message coming about it

> > >

> > > I'm in East Wareham, where are you?

> > >

> > > Regards,

> > >

> > > Patti

> > >

> > >

> > >

[Guest guest]

,

This is very off topic from your situation (I wish I had some advice for you,

I've never actually used PCA's, something that is going to backfire on me at

some point in time but I digress)...

I wonder if we know each other from back in the day. Have you always lived in

New Bedford? I grew up in Assonet and was involved in all MDA things as a child

as I feel we all are. I moved when I was 8, so it was a while ago (I'm 26 now,

so we're kind of close in age). Just wondering :-)

Sent from my iPhone

On Jul 1, 2011, at 3:10 PM, Sabino <michelle7997020407@...>

wrote:

> How on earth did u manage to get 24hr pcas!? I'm having a heck of a time

> getting enough hrs, I get 89hrs per week + overnights (2hrs per night x 7

> days = 14hrs) so total = 103hrs per week, but it just isnt enough. I

> recently put in for an additional 10hrs per week for eating & I'm awaiting

> Mass Health's decision. That will raise me to 99hrs per week + overnights,

> IF they approve it.. I have a 21 day wait.

>

> I'm also having a horrible time trying to hire pcas! People either don't

> show up for interviews, or the 1s who do show up, are just plain scary &

> there's no way I'm hiring them. I'm 32yrs old, & I've been hiring pca's

> since I was 15. I've had quite a few colorful 1s over the years, some good,

> some bad, some crazy, lol. But it's never taken me this long to find a half

> way decent 1, I been trying since Jan. I had a really good pca for 5yrs.,

> she always said she loved the job, & she'd NEVER quit, & then in Jan she

> left me flat, just did not show up for work 1 day, & then TEXT me to say she

> quit!

>

> This has been a rough time for me, I've had to depend on my family to help

> me out all these months, & while they are good enough to help & not leave me

> stranded, they treat me like I'm 12yrs old. I'm 32, I'm very independent

> minded, I have a Bachelor of Fine Arts Degree in Graphic Design from UMass,

> I had a full-time job at an Independent Living Center for 9yrs, until I

> recently started having a serious respiratory problem back in Oct. which has

> forced me to cut back to doing only 10hrs a week of work from home (but they

> are still holding my position for me, they want me back). While at the ILC

> I've ran administrative pilot programs, worked on organizing a special

> program for youth with disabilities, worked directly with consumers

> providing skills training, peer support, advocacy- both individual &

> systemic, I've worked with all people, of all ages, with all disabilities,

> I've done PR work, I did much of their graphic design work.... I could go on

> & on, I had major responsibilities on my job. I saved up, paid off my

> student loans & bought myself a van. I had a bf, kind of still have him,

> kind of, except I have been unable to see him all these months because my

> family disapproves, & I'm living in my mothers house & he's not allowed to

> come here, & I'm not feeling well enough now to really go out & see him, &

> even if I was, I'm stuck with my mom & aunt for pcas, so that wouldn't be

> happening.

>

> & as angry as I am at my last pca for leaving me, a lot of it was my mothers

> pushing, she really didn't like me having her, she was young, in her 20's, &

> basically having her allowed me my freedom & independence, & allowed me to

> be w/my bf. My mother knew it & hated it, so she picked at every little

> thing the girl did, said everything she did was wrong, blamed her for stuff

> she didn't even do (like making messes in the house). She kind of pushed her

> out the door. Both my aunt & my mother are very jealous & don't like it if I

> like other pcas or other people get to close to me, they act very

> competitive about it.

>

> Besides that my mother acts very possessive of me, I know she cares, but it

> goes beyond that, she wants to control me & my life. & it's not like I've

> never been away before, when I was a kid mother really pushed me to be

> independent, to go out to school, to camp, & when I got to be 14yrs old to

> go live at the Mass Hospital School 50mi away from her, I lived there from

> age 14 - 18, & then she forced me at 18 to live on campus at UMass, even

> though I totally felt unprepared to do it. I lived there for 2yrs, & then,

> as she puts it (I failed) & had to move back home. Well, while living on

> campus at 18, having no knowledge of IL Services, I had major pca issues. If

> it was today, it wouldn't happen, because I know my resources, I would get

> myself Case Management, & I would prepare better before hand, find myself a

> live-in pca, etc., plus I act more responsibly now with pcas than I did at

> 18. But because I tried living independently once & " failed " she's dead set

> against me trying it again. & she's also against me having any IL Services

> here, if I had Case Management Services right now, I'm sure I would have at

> least 1 replacement pca by now (long time ago actually), but she's dead set

> against that too. Whenever I mention getting services, she gets angry & says

> " I PROVIDE U WITH CADILLAC SERVICES, UR UNGRATEFUL, & U'LL FIND OUT WHEN I'M

> DEAD HOW MUCH I DO FOR U! " so I can't even talk about it. I am really up

> against a lot here..... & it's crazy, because as a teen I had all the

> freedom in the world, dated as I wanted & all, & now I can't, I'm not

> allowed.. & now as of lately mother is talking about wanting to retire early

> & work for me full time... oh joy! I pray everyday that doesn't happen.

> Right now aunt stays with me pretty much all day & mom just nites &

> weekends. I think she kind of hopes we won't find another pca...

>

> Since Oct. I've been having a restricted feeling when I breath, I have

> tightness in my chest, & sometimes pain. I also have a whistle when I

> exhale. I've been through numerous tests, & Dr.'s can't figure anything out.

> They've suggested it might be a mucus plug, but aren't sure. It's a longer

> story, I can elaborate more later, I'm just starting to feel really

> exhausted from all this writing..

>

> But, if my breathing ever gets back to normal, I'm seriously looking to get

> out of this situation. I just need to find some really good people to help

> me.

>

> ~

>

> On Wed, Jun 29, 2011 at 12:46 PM, Patti Healey <pidgie508@...> wrote:

>

> > Yes I live indepently with 24 hr pcas and I live with my fiance. You ?

> >

>

>

[Guest guest]

OMG! YES! YES! YES! I SAW UR NAME & WONDERED IF IT WAS U, & IT ISSSS U! OOOH I'M

VERY EXCITED WE FOUND EACHOTHER AGAIN! I still think of u, & the fun times we

had on the van going to Handi Kids camp. Remember " Bad Brad the Man with the

Van! " ???? Sadly he passed away in Jan. Remember he took us all to Mcs

1 day? Oooh the memories.... Where did u move? & if u don't have PCA's, who

helps u? Or do u not need help? Which type SMA do u have? I never knew which

form of MD u had, I never payed attention to that stuff as a kid. Well plz keep

in touch, my fb is: http://facebook.com/michellesabino

> >

> > > Yes I live indepently with 24 hr pcas and I live with my fiance. You ?

> > >

> >

> >

[Guest guest]

We only get 73 daytime hours and 14 nighttime hours. 87 total hours. I'm

interested in knowing how got 24/7 as well.

~ (Peabody Mass)

Re: location

How on earth did u manage to get 24hr pcas!? I'm having a heck of a time getting

enough hrs, I get 89hrs per week + overnights (2hrs per night x 7 days = 14hrs)

so total = 103hrs per week, but it just isnt enough. I recently put in for an

additional 10hrs per week for eating & I'm awaiting Mass Health's decision. That

will raise me to 99hrs per week + overnights, IF they approve it.. I have a 21

day wait.

I'm also having a horrible time trying to hire pcas! People either don't show up

for interviews, or the 1s who do show up, are just plain scary & there's no way

I'm hiring them. I'm 32yrs old, & I've been hiring pca's since I was 15. I've

had quite a few colorful 1s over the years, some good, some bad, some crazy,

lol. But it's never taken me this long to find a half way decent 1, I been

trying since Jan. I had a really good pca for 5yrs., she always said she loved

the job, & she'd NEVER quit, & then in Jan she left me flat, just did not show

up for work 1 day, & then TEXT me to say she quit!

This has been a rough time for me, I've had to depend on my family to help me

out all these months, & while they are good enough to help & not leave me

stranded, they treat me like I'm 12yrs old. I'm 32, I'm very independent minded,

I have a Bachelor of Fine Arts Degree in Graphic Design from UMass, I had a

full-time job at an Independent Living Center for 9yrs, until I recently started

having a serious respiratory problem back in Oct. which has forced me to cut

back to doing only 10hrs a week of work from home (but they are still holding my

position for me, they want me back). While at the ILC I've ran administrative

pilot programs, worked on organizing a special program for youth with

disabilities, worked directly with consumers providing skills training, peer

support, advocacy- both individual & systemic, I've worked with all people, of

all ages, with all disabilities, I've done PR work, I did much of their graphic

design work.... I could go on & on, I had major responsibilities on my job. I

saved up, paid off my student loans & bought myself a van. I had a bf, kind of

still have him, kind of, except I have been unable to see him all these months

because my family disapproves, & I'm living in my mothers house & he's not

allowed to come here, & I'm not feeling well enough now to really go out & see

him, & even if I was, I'm stuck with my mom & aunt for pcas, so that wouldn't be

happening.

& as angry as I am at my last pca for leaving me, a lot of it was my mothers

pushing, she really didn't like me having her, she was young, in her 20's, &

basically having her allowed me my freedom & independence, & allowed me to be

w/my bf. My mother knew it & hated it, so she picked at every little thing the

girl did, said everything she did was wrong, blamed her for stuff she didn't

even do (like making messes in the house). She kind of pushed her out the door.

Both my aunt & my mother are very jealous & don't like it if I like other pcas

or other people get to close to me, they act very competitive about it.

Besides that my mother acts very possessive of me, I know she cares, but it goes

beyond that, she wants to control me & my life. & it's not like I've never been

away before, when I was a kid mother really pushed me to be independent, to go

out to school, to camp, & when I got to be 14yrs old to go live at the Mass

Hospital School 50mi away from her, I lived there from age 14 - 18, & then she

forced me at 18 to live on campus at UMass, even though I totally felt

unprepared to do it. I lived there for 2yrs, & then, as she puts it (I failed) &

had to move back home. Well, while living on campus at 18, having no knowledge

of IL Services, I had major pca issues. If it was today, it wouldn't happen,

because I know my resources, I would get myself Case Management, & I would

prepare better before hand, find myself a live-in pca, etc., plus I act more

responsibly now with pcas than I did at 18. But because I tried living

independently once & " failed " she's dead set against me trying it again. & she's

also against me having any IL Services here, if I had Case Management Services

right now, I'm sure I would have at least 1 replacement pca by now (long time

ago actually), but she's dead set against that too. Whenever I mention getting

services, she gets angry & says " I PROVIDE U WITH CADILLAC SERVICES, UR

UNGRATEFUL, & U'LL FIND OUT WHEN I'M DEAD HOW MUCH I DO FOR U! " so I can't even

talk about it. I am really up against a lot here..... & it's crazy, because as a

teen I had all the freedom in the world, dated as I wanted & all, & now I can't,

I'm not allowed.. & now as of lately mother is talking about wanting to retire

early & work for me full time... oh joy! I pray everyday that doesn't happen.

Right now aunt stays with me pretty much all day & mom just nites & weekends. I

think she kind of hopes we won't find another pca...

Since Oct. I've been having a restricted feeling when I breath, I have tightness

in my chest, & sometimes pain. I also have a whistle when I exhale. I've been

through numerous tests, & Dr.'s can't figure anything out. They've suggested it

might be a mucus plug, but aren't sure. It's a longer story, I can elaborate

more later, I'm just starting to feel really exhausted from all this writing..

But, if my breathing ever gets back to normal, I'm seriously looking to get out

of this situation. I just need to find some really good people to help me.

~

On Wed, Jun 29, 2011 at 12:46 PM, Patti Healey <pidgie508@...> wrote:

Yes I live indepently with 24 hr pcas and I live with my fiance. You ?

[Guest guest]

Are there any members of this group in Middle Tennessee, I would like to talk

with you. thanks, Pat

[Guest guest]

Hey, Pat.

Yeah, sorta. I am near Huntsville, AL and  I drive up the Lawrenceburg area

from time to time. If that is near enough to beautiful Middle Tennessee, you can

write me back off list.

ie

________________________________

From: Pat <epj9944@...>

Sent: Monday, November 21, 2011 8:15 AM

Subject: location

 

Are there any members of this group in Middle Tennessee, I would like to talk

with you. thanks, Pat