RE: question about handicap parking

[Guest guest]

I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me!

LOL!!! You brutal woman-- making mom drag along behind you....See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Debbie

the fact that you were able to do is amazing, when we have family over they

always want to walk down to the lake, we live only 5 houses away from a so

called lake, and we have a strip of sand that from our house to the lake, and I

always say you go and have fun I’ll stay here, and they give me the “you

wimp look”. We went to the mountains with family and I didn’t ski,

I use to love to, so my sister in law who just doesn’t ski, her and I decided

to go shopping in the fun little shops so we did and I walked way too long, so

when everyone was ready to go out and eat I just couldn’t I had to go to

bed, and my other sister in law told my husband it is just my eating habits, if

I started eating health food, (she is a vegetarian) I would feel better, I’m

just sick because I eat wrong J don’t you just love it. Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Sunday, November 04, 2007

7:06 AM

To:

Neurosarcoidosis

Subject: Re:

Re: question about handicap parking

I can agree with the handicap placard. I use it too and I feel

like everyone is staring at me. I can actually see the elder generation

staring like I shouldn't park there because I am younger. I would be

very, very upset if I got the note that you did, Shauna.

My family , even my mother , can't seem to understand the fact of

the symptoms I have. I agree with you there too. They make me feel

very uncomfortable when they ask me about daily events, like when I am going

back to work, etc. ( I am on disability) Last spring , my

cousin, actually asked me to go for a walk on the beach when it was still cold

out. And if anyone is from the coastline, you know how hard it is to walk

for a long time through the heavy sand. I have to bring my

inhaler! Debbie Co-Moderator

Shauna Glaspie

<sglaspie2000 (AT) yahoo (DOT) com> wrote:

I know what you all mean. I was once working in an office

building before I got my disability and I had already had my handicap

decal. We had a parking garage and I would park in the handcap parking

space because usually it would be free to use at work since not many people

were handicapped there. I also parked there because it was

right in front of the elevator and half of the time I couldn't remember what

floor I parked on if I didn't park in the handicap spot.

One day I came back to my car and there was a note on my car door

saying " You do not appear to be

handicapped so why are parking in this space? " I

was so outdone that someone would actually write me a note saying that when

that didn't even know what I had been going through. The bad thing

about it is that they didn't know me and they didn't leave their name on the

note so I could respond.

As you all know, most of us don't look like anything is wrong so most

people don't think that we are sick. Many think that I can do things

like they can and they start to think that I am not trying to do

anything. I even have some family members that don't realize the extent

of the condition. They don't realize how tired I get just from standing

for long periods of time or walking into the store and they were with me

during some of the worse times like memory loss, extremely bad

headaches,backaches, dizziness etc. But just because you look fine

doesn't mean that you are.

I wish I could do the things I used to. This started in my prime

at 25 just when I was enjoying things the most and then it seems all of a

sudden things changed. I was tired, in pain and uncomfortable from the weight

gain from prednisone. I used to be 130lbs and balloon 205lbs on

prednisone and currently down to 160lbs. My body doesn't seem like my

own. And the worse thing is when people you know come up to you and say wow you

got big as if I sat around eating myself to death or I did it to myself.

Some people have no tact. But I keep going on and think I have come a

long way. I still have flare up and am still on prednisone so I don't

think I will 130lbs anytime soon.

__________________________________________________

[Guest guest]

I didn't appreciate the folks up here in Indiana. They are either more compassionate, less judgmental, or maybe just oblivious. I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: rozebudz36@...Date: Sun, 4 Nov 2007 07:06:21 -0800Subject: Re: Re: question about handicap parking

I can agree with the handicap placard. I use it too and I feel like everyone is staring at me. I can actually see the elder generation staring like I shouldn't park there because I am younger. I would be very, very upset if I got the note that you did, Shauna.

My family , even my mother , can't seem to understand the fact of the symptoms I have. I agree with you there too. They make me feel very uncomfortable when they ask me about daily events, like when I am going back to work, etc. ( I am on disability) Last spring , my cousin, actually asked me to go for a walk on the beach when it was still cold out. And if anyone is from the coastline, you know how hard it is to walk for a long time through the heavy sand. I have to bring my inhaler! Debbie Co-ModeratorShauna Glaspie <sglaspie2000 (AT) yahoo (DOT) com> wrote:

I know what you all mean. I was once working in an office building before I got my disability and I had already had my handicap decal. We had a parking garage and I would park in the handcap parking space because usually it would be free to use at work since not many people were handicapped there. I also parked there because it was right in front of the elevator and half of the time I couldn't remember what floor I parked on if I didn't park in the handicap spot.

One day I came back to my car and there was a note on my car door saying "You do not appear to be handicapped so why are parking in this space?" I was so outdone that someone would actually write me a note saying that when that didn't even know what I had been going through. The bad thing about it is that they didn't know me and they didn't leave their name on the note so I could respond.

As you all know, most of us don't look like anything is wrong so most people don't think that we are sick. Many think that I can do things like they can and they start to think that I am not trying to do anything. I even have some family members that don't realize the extent of the condition. They don't realize how tired I get just from standing for long periods of time or walking into the store and they were with me during some of the worse times like memory loss, extremely bad headaches,backaches, dizziness etc. But just because you look fine doesn't mean that you are.

I wish I could do the things I used to. This started in my prime at 25 just when I was enjoying things the most and then it seems all of a sudden things changed. I was tired, in pain and uncomfortable from the weight gain from prednisone. I used to be 130lbs and balloon 205lbs on prednisone and currently down to 160lbs. My body doesn't seem like my own. And the worse thing is when people you know come up to you and say wow you got big as if I sat around eating myself to death or I did it to myself. Some people have no tact. But I keep going on and think I have come a long way. I still have flare up and am still on prednisone so I don't think I will 130lbs anytime soon.

__________________________________________________

[Guest guest]

Claude,

Ours are made with heavy duty plastic and hang from the rear view

mirror. I requested 2 but I was told I could only have one. That is

why I am thinking about he plates.

Terri

> >

> > That's great news, a handicapped apartment, exciting for you and

> I'm so

> > happy for you. I picked up my handicapped parking plaque

> yesterday, I got

> > two, one to carry with me and one for my car, I had time after my

> OT visit,

> > which was just more questions, anyway I got to Wal-Mart and

> wouldn't you

> > know no close place parking so it was the first time I used it, and

> when I

> > got out I wanted to scream to everyone, " I HAVE NEUROSARCOIDOSIS "

> and unless

> > you can even spell it don't say a word! :-) OK so there really

> wasn't

> > anyone looking at me I just felt that way. I told Joe later who

> lives in

> > his computer world and doesn't know what is going on with the rest

> of the

> > world, and he gave me that look and said Mom do you really need

> this, and I

> > said Joe you obviously don't have a clue what is happening to your

> mom, so I

> > got down on the floor, and attempted to lift my legs, the left

> barely comes

> > up, the right sometimes ½ way and sometimes a ¼ depending on

the

> day, he

> > freaked at for a minute and then said, " how the heck can you

> walk " , which

> > is my question too, but somehow I keep going, slow and unsteady,

> but going.

> > Isn't it funny how those we live with don't even think we are

> sick? Wishing

> > you all a great weekend, Marla

> >

> >

> >

> >

> >

> > _____

> >

> > From: Neurosarcoidosis

> > [mailto:Neurosarcoidosis ] On Behalf Of

> > Sent: Thursday, November 01, 2007 10:23 PM

> > To: Neurosarcoidosis

> > Subject: RE: question about handicap parking

> >

> >

> >

> > Hi Marla

> >

> > I'm starting to have trouble with buttons but mostly I wear tshirts

> & sweat

> > shirts.

> >

> > I've been busy when I haven't been sleeping but thought I'd check

> in.

> > Everything is approved and I'll get the keys to the handicapped

> apartment

> > tomorrow! Yea! I'll be able to go outside without having to mess

> with steps!

> > While you guys had custody of my doctors(LOL) I've been feeling the

> need of

> > my missed treatments.

> >

> >

> >

> > Join our Sock Challenge for Orphans in Kazakhstan

> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/

> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>

> >

> > grannylunatic@

> >

> > __________________________________________________

> >

[Guest guest]

Claude,

Ours are made with heavy duty plastic and hang from the rear view

mirror. I requested 2 but I was told I could only have one. That is

why I am thinking about he plates.

Terri

> >

> > That's great news, a handicapped apartment, exciting for you and

> I'm so

> > happy for you. I picked up my handicapped parking plaque

> yesterday, I got

> > two, one to carry with me and one for my car, I had time after my

> OT visit,

> > which was just more questions, anyway I got to Wal-Mart and

> wouldn't you

> > know no close place parking so it was the first time I used it, and

> when I

> > got out I wanted to scream to everyone, " I HAVE NEUROSARCOIDOSIS "

> and unless

> > you can even spell it don't say a word! :-) OK so there really

> wasn't

> > anyone looking at me I just felt that way. I told Joe later who

> lives in

> > his computer world and doesn't know what is going on with the rest

> of the

> > world, and he gave me that look and said Mom do you really need

> this, and I

> > said Joe you obviously don't have a clue what is happening to your

> mom, so I

> > got down on the floor, and attempted to lift my legs, the left

> barely comes

> > up, the right sometimes ½ way and sometimes a ¼ depending on

the

> day, he

> > freaked at for a minute and then said, " how the heck can you

> walk " , which

> > is my question too, but somehow I keep going, slow and unsteady,

> but going.

> > Isn't it funny how those we live with don't even think we are

> sick? Wishing

> > you all a great weekend, Marla

> >

> >

> >

> >

> >

> > _____

> >

> > From: Neurosarcoidosis

> > [mailto:Neurosarcoidosis ] On Behalf Of

> > Sent: Thursday, November 01, 2007 10:23 PM

> > To: Neurosarcoidosis

> > Subject: RE: question about handicap parking

> >

> >

> >

> > Hi Marla

> >

> > I'm starting to have trouble with buttons but mostly I wear tshirts

> & sweat

> > shirts.

> >

> > I've been busy when I haven't been sleeping but thought I'd check

> in.

> > Everything is approved and I'll get the keys to the handicapped

> apartment

> > tomorrow! Yea! I'll be able to go outside without having to mess

> with steps!

> > While you guys had custody of my doctors(LOL) I've been feeling the

> need of

> > my missed treatments.

> >

> >

> >

> > Join our Sock Challenge for Orphans in Kazakhstan

> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/

> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>

> >

> > grannylunatic@

> >

> > __________________________________________________

> >

[Guest guest]

Teri, Hope that works out for you and the cost isn't too much. We get the placard here in utah free of charge and can also get more than one if needed.mosaicgirl1 wrote: Claude,Ours are made with heavy duty plastic and hang from the rear viewmirror. I requested 2 but I was told I could only have one. That iswhy I am thinking about he plates.Terri> >> > That's great news, a handicapped apartment, exciting for you and> I'm so> > happy for you. I picked up my handicapped parking plaque> yesterday, I got>

> two, one to carry with me and one for my car, I had time after my> OT visit,> > which was just more questions, anyway I got to Wal-Mart and> wouldn't you> > know no close place parking so it was the first time I used it, and> when I> > got out I wanted to scream to everyone, "I HAVE NEUROSARCOIDOSIS"> and unless> > you can even spell it don't say a word! :-) OK so there really> wasn't> > anyone looking at me I just felt that way. I told Joe later who> lives in> > his computer world and doesn't know what is going on with the rest> of the> > world, and he gave me that look and said Mom do you really need> this, and I> > said Joe you obviously don't have a clue what is happening to your> mom, so I> > got down on the floor, and attempted to lift my legs, the left> barely comes> > up, the right sometimes ½

way and sometimes a ¼ depending onthe> day, he> > freaked at for a minute and then said, " how the heck can you> walk", which> > is my question too, but somehow I keep going, slow and unsteady,> but going.> > Isn't it funny how those we live with don't even think we are> sick? Wishing> > you all a great weekend, Marla> >> >> >> >> >> > _____> >> > From: Neurosarcoidosis > > [mailto:Neurosarcoidosis ] On Behalf Of > > Sent: Thursday, November 01, 2007 10:23 PM> > To: Neurosarcoidosis > > Subject: RE: question about

handicap parking> >> >> >> > Hi Marla> >> > I'm starting to have trouble with buttons but mostly I wear tshirts> & sweat> > shirts.> >> > I've been busy when I haven't been sleeping but thought I'd check> in.> > Everything is approved and I'll get the keys to the handicapped> apartment> > tomorrow! Yea! I'll be able to go outside without having to mess> with steps!> > While you guys had custody of my doctors(LOL) I've been feeling the> need of> > my missed treatments.> >> >> >> > Join our Sock Challenge for Orphans in Kazakhstan> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>> > > > grannylunatic@> >> > __________________________________________________> >

[Guest guest]

Teri, Hope that works out for you and the cost isn't too much. We get the placard here in utah free of charge and can also get more than one if needed.mosaicgirl1 wrote: Claude,Ours are made with heavy duty plastic and hang from the rear viewmirror. I requested 2 but I was told I could only have one. That iswhy I am thinking about he plates.Terri> >> > That's great news, a handicapped apartment, exciting for you and> I'm so> > happy for you. I picked up my handicapped parking plaque> yesterday, I got>

> two, one to carry with me and one for my car, I had time after my> OT visit,> > which was just more questions, anyway I got to Wal-Mart and> wouldn't you> > know no close place parking so it was the first time I used it, and> when I> > got out I wanted to scream to everyone, "I HAVE NEUROSARCOIDOSIS"> and unless> > you can even spell it don't say a word! :-) OK so there really> wasn't> > anyone looking at me I just felt that way. I told Joe later who> lives in> > his computer world and doesn't know what is going on with the rest> of the> > world, and he gave me that look and said Mom do you really need> this, and I> > said Joe you obviously don't have a clue what is happening to your> mom, so I> > got down on the floor, and attempted to lift my legs, the left> barely comes> > up, the right sometimes ½

way and sometimes a ¼ depending onthe> day, he> > freaked at for a minute and then said, " how the heck can you> walk", which> > is my question too, but somehow I keep going, slow and unsteady,> but going.> > Isn't it funny how those we live with don't even think we are> sick? Wishing> > you all a great weekend, Marla> >> >> >> >> >> > _____> >> > From: Neurosarcoidosis > > [mailto:Neurosarcoidosis ] On Behalf Of > > Sent: Thursday, November 01, 2007 10:23 PM> > To: Neurosarcoidosis > > Subject: RE: question about

handicap parking> >> >> >> > Hi Marla> >> > I'm starting to have trouble with buttons but mostly I wear tshirts> & sweat> > shirts.> >> > I've been busy when I haven't been sleeping but thought I'd check> in.> > Everything is approved and I'll get the keys to the handicapped> apartment> > tomorrow! Yea! I'll be able to go outside without having to mess> with steps!> > While you guys had custody of my doctors(LOL) I've been feeling the> need of> > my missed treatments.> >> >> >> > Join our Sock Challenge for Orphans in Kazakhstan> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>> > > > grannylunatic@> >> > __________________________________________________> >

[Guest guest]

Terri, I'm sorry that I don't remember where you live. I'm sure states have varying laws. I live in Indiana & I was able to get the license plate and one placard. I carry the placard in my purse to use if needed when riding in someone else's car. Most times I don't need it then because they can drop me off at the store entrance, etc. I did use it when going to the State Fair, though, and it was sure great then.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mosaicgirl1@...Date: Mon, 5 Nov 2007 00:37:11 +0000Subject: Re: question about handicap parking

Claude,Ours are made with heavy duty plastic and hang from the rear viewmirror. I requested 2 but I was told I could only have one. That iswhy I am thinking about he plates.Terri> >> > That's great news, a handicapped apartment, exciting for you and> I'm so> > happy for you. I picked up my handicapped parking plaque> yesterday, I got> > two, one to carry with me and one for my car, I had time after my> OT visit,> > which was just more questions, anyway I got to Wal-Mart and> wouldn't you> > know no close place parking so it was the first time I used it, and> when I> > got out I wanted to scream to everyone, "I HAVE NEUROSARCOIDOSIS"> and unless> > you can even spell it don't say a word! :-) OK so there really> wasn't> > anyone looking at me I just felt that way. I told Joe later who> lives in> > his computer world and doesn't know what is going on with the rest> of the> > world, and he gave me that look and said Mom do you really need> this, and I> > said Joe you obviously don't have a clue what is happening to your> mom, so I> > got down on the floor, and attempted to lift my legs, the left> barely comes> > up, the right sometimes ½ way and sometimes a ¼ depending onthe> day, he> > freaked at for a minute and then said, " how the heck can you> walk", which> > is my question too, but somehow I keep going, slow and unsteady,> but going.> > Isn't it funny how those we live with don't even think we are> sick? Wishing> > you all a great weekend, Marla> >> >> >> >> >> > _____> >> > From: Neurosarcoidosis > > [mailto:Neurosarcoidosis ] On Behalf Of > > Sent: Thursday, November 01, 2007 10:23 PM> > To: Neurosarcoidosis > > Subject: RE: question about handicap parking> >> >> >> > Hi Marla> >> > I'm starting to have trouble with buttons but mostly I wear tshirts> & sweat> > shirts.> >> > I've been busy when I haven't been sleeping but thought I'd check> in.> > Everything is approved and I'll get the keys to the handicapped> apartment> > tomorrow! Yea! I'll be able to go outside without having to mess> with steps!> > While you guys had custody of my doctors(LOL) I've been feeling the> need of> > my missed treatments.> >> >> >> > Join our Sock Challenge for Orphans in Kazakhstan> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>> > > > grannylunatic@> >> > __________________________________________________> >

[Guest guest]

Terri, I'm sorry that I don't remember where you live. I'm sure states have varying laws. I live in Indiana & I was able to get the license plate and one placard. I carry the placard in my purse to use if needed when riding in someone else's car. Most times I don't need it then because they can drop me off at the store entrance, etc. I did use it when going to the State Fair, though, and it was sure great then.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mosaicgirl1@...Date: Mon, 5 Nov 2007 00:37:11 +0000Subject: Re: question about handicap parking

Claude,Ours are made with heavy duty plastic and hang from the rear viewmirror. I requested 2 but I was told I could only have one. That iswhy I am thinking about he plates.Terri> >> > That's great news, a handicapped apartment, exciting for you and> I'm so> > happy for you. I picked up my handicapped parking plaque> yesterday, I got> > two, one to carry with me and one for my car, I had time after my> OT visit,> > which was just more questions, anyway I got to Wal-Mart and> wouldn't you> > know no close place parking so it was the first time I used it, and> when I> > got out I wanted to scream to everyone, "I HAVE NEUROSARCOIDOSIS"> and unless> > you can even spell it don't say a word! :-) OK so there really> wasn't> > anyone looking at me I just felt that way. I told Joe later who> lives in> > his computer world and doesn't know what is going on with the rest> of the> > world, and he gave me that look and said Mom do you really need> this, and I> > said Joe you obviously don't have a clue what is happening to your> mom, so I> > got down on the floor, and attempted to lift my legs, the left> barely comes> > up, the right sometimes ½ way and sometimes a ¼ depending onthe> day, he> > freaked at for a minute and then said, " how the heck can you> walk", which> > is my question too, but somehow I keep going, slow and unsteady,> but going.> > Isn't it funny how those we live with don't even think we are> sick? Wishing> > you all a great weekend, Marla> >> >> >> >> >> > _____> >> > From: Neurosarcoidosis > > [mailto:Neurosarcoidosis ] On Behalf Of > > Sent: Thursday, November 01, 2007 10:23 PM> > To: Neurosarcoidosis > > Subject: RE: question about handicap parking> >> >> >> > Hi Marla> >> > I'm starting to have trouble with buttons but mostly I wear tshirts> & sweat> > shirts.> >> > I've been busy when I haven't been sleeping but thought I'd check> in.> > Everything is approved and I'll get the keys to the handicapped> apartment> > tomorrow! Yea! I'll be able to go outside without having to mess> with steps!> > While you guys had custody of my doctors(LOL) I've been feeling the> need of> > my missed treatments.> >> >> >> > Join our Sock Challenge for Orphans in Kazakhstan> > http://groups. yahoo.com/ group/Mittens_ for_Akkol/> > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>> > > > grannylunatic@> >> > __________________________________________________> >

[Guest guest]

Rose,

I live in Virginia.

Terri

> >> > That's great news, a handicapped

apartment, exciting for you and> I'm so> > happy for you. I picked up my

handicapped parking plaque> yesterday, I got> > two, one to carry with

me and one for my car, I had time after my> OT visit,> > which was just

more questions, anyway I got to Wal-Mart and> wouldn't you> > know no

close place parking so it was the first time I used it, and> when I> >

got out I wanted to scream to everyone, " I HAVE NEUROSARCOIDOSIS " > and

unless> > you can even spell it don't say a word! :-) OK so there

really> wasn't> > anyone looking at me I just felt that way. I told Joe

later who> lives in> > his computer world and doesn't know what is going

on with the rest> of the> > world, and he gave me that look and said Mom

do you really need> this, and I> > said Joe you obviously don't have a

clue what is happening to your> mom, so I> > got down on the floor, and

attempted to lift my legs, the left> barely comes> > up, the right

sometimes ½ way and sometimes a ¼ depending onthe> day, he> >

freaked at for a minute and then said, " how the heck can you> walk " ,

which> > is my question too, but somehow I keep going, slow and

unsteady,> but going.> > Isn't it funny how those we live with don't

even think we are> sick? Wishing> > you all a great weekend, Marla> >>

>> >> >> >> > _____> >> > From: Neurosarcoidosis >

[mailto:Neurosarcoidosis ] On Behalf Of > >

Sent: Thursday, November 01, 2007 10:23 PM> > To:

Neurosarcoidosis > Subject: RE:

question about handicap parking> >> >> >> > Hi Marla> >> > I'm starting

to have trouble with buttons but mostly I wear tshirts> & sweat> >

shirts.> >> > I've been busy when I haven't been sleeping but thought

I'd check> in.> > Everything is approved and I'll get the keys to the

handicapped> apartment> > tomorrow! Yea! I'll be able to go outside

without having to mess> with steps!> > While you guys had custody of my

doctors(LOL) I've been feeling the> need of> > my missed treatments.> >>

>> >> > Join our Sock Challenge for Orphans in Kazakhstan> >

http://groups. yahoo.com/ group/Mittens_ for_Akkol/> >

<http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>> > > >

grannylunatic@> >> > __________________________________________________>

>

[Guest guest]

Claude,

Wow, I can't believe you get if for free. Here in VA you don't get

anything for free.

Terri

> > >

> > > That's great news, a handicapped apartment, exciting for you and

> > I'm so

> > > happy for you. I picked up my handicapped parking plaque

> > yesterday, I got

> > > two, one to carry with me and one for my car, I had time after my

> > OT visit,

> > > which was just more questions, anyway I got to Wal-Mart and

> > wouldn't you

> > > know no close place parking so it was the first time I used it,

and

> > when I

> > > got out I wanted to scream to everyone, " I HAVE NEUROSARCOIDOSIS "

> > and unless

> > > you can even spell it don't say a word! :-) OK so there really

> > wasn't

> > > anyone looking at me I just felt that way. I told Joe later who

> > lives in

> > > his computer world and doesn't know what is going on with the rest

> > of the

> > > world, and he gave me that look and said Mom do you really need

> > this, and I

> > > said Joe you obviously don't have a clue what is happening to your

> > mom, so I

> > > got down on the floor, and attempted to lift my legs, the left

> > barely comes

> > > up, the right sometimes ½ way and sometimes a ¼ depending on

> the

> > day, he

> > > freaked at for a minute and then said, " how the heck can you

> > walk " , which

> > > is my question too, but somehow I keep going, slow and unsteady,

> > but going.

> > > Isn't it funny how those we live with don't even think we are

> > sick? Wishing

> > > you all a great weekend, Marla

> > >

> > >

> > >

> > >

> > >

> > > _____

> > >

> > > From: Neurosarcoidosis

> > > [mailto:Neurosarcoidosis ] On Behalf Of

> > > Sent: Thursday, November 01, 2007 10:23 PM

> > > To: Neurosarcoidosis

> > > Subject: RE: question about handicap parking

> > >

> > >

> > >

> > > Hi Marla

> > >

> > > I'm starting to have trouble with buttons but mostly I wear

tshirts

> > & sweat

> > > shirts.

> > >

> > > I've been busy when I haven't been sleeping but thought I'd check

> > in.

> > > Everything is approved and I'll get the keys to the handicapped

> > apartment

> > > tomorrow! Yea! I'll be able to go outside without having to mess

> > with steps!

> > > While you guys had custody of my doctors(LOL) I've been feeling

the

> > need of

> > > my missed treatments.

> > >

> > >

> > >

> > > Join our Sock Challenge for Orphans in Kazakhstan

> > > http://groups. yahoo.com/ group/Mittens_ for_Akkol/

> > > <http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif>

> > >

> > > grannylunatic@

> > >

> > > __________________________________________________

> > >

[Guest guest]

RE: question about handicap parking> >> >> >> > Hi Marla> >> > I'm startingto have trouble with buttons but mostly I wear tshirts> & sweat> >shirts.> >> > I've been busy when I haven't been sleeping but thoughtI'd check> in.> > Everything is approved and I'll get the keys to thehandicapped> apartment> > tomorrow! Yea! I'll be able to go outsidewithout having to mess> with steps!> >

While you guys had custody of mydoctors(LOL) I've been feeling the> need of> > my missed treatments.> >>>> >> > Join our Sock Challenge for Orphans in Kazakhstan> >http://groups. yahoo.com/ group/Mittens_ for_Akkol/> ><http://us.i1. yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /04.gif>> > > >grannylunatic@ > >> > ____________ _________ _________ _________ _________ __>>

[Guest guest]

RE: question about handicap parking> >> >> >> > Hi Marla> >> > I'm startingto have trouble with buttons but mostly I wear tshirts> & sweat> >shirts.> >> > I've been busy when I haven't been sleeping but thoughtI'd check> in.> > Everything is approved and I'll get the keys to thehandicapped> apartment> > tomorrow! Yea! I'll be able to go outsidewithout having to mess> with steps!> >

While you guys had custody of mydoctors(LOL) I've been feeling the> need of> > my missed treatments.> >>>> >> > Join our Sock Challenge for Orphans in Kazakhstan> >http://groups. yahoo.com/ group/Mittens_ for_Akkol/> ><http://us.i1. yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /04.gif>> > > >grannylunatic@ > >> > ____________ _________ _________ _________ _________ __>>

[Guest guest]

Rose, That is a good idea to keeping your placard in your purse. Sometimes I go places with my mother and I sure could use it while in her car. Thanks for the suggestion. Debbiemosaicgirl1 wrote: Rose,I live in Virginia.Terri> >> > That's great news, a handicappedapartment, exciting for you and> I'm so> > happy for you. I picked up myhandicapped parking plaque> yesterday, I got> > two, one to carry withme and one for my car, I had time after my> OT visit,> > which was justmore questions, anyway I got to Wal-Mart and> wouldn't you> > know noclose place parking so it was the first time I used it, and> when I> >got out I wanted to scream to everyone, "I HAVE NEUROSARCOIDOSIS"> andunless> > you can even spell it don't say a word! :-) OK so therereally> wasn't> > anyone looking at me I just felt that way. I told ater who> lives in> > his computer world and doesn't know what is goingon with the rest> of the> > world, and he gave me that look and said Momdo you really need> this, and

I> > said Joe you obviously don't have aclue what is happening to your> mom, so I> > got down on the floor, andattempted to lift my legs, the left> barely comes> > up, the rightsometimes ½ way and sometimes a ¼ depending onthe> day, he> >freaked at for a minute and then said, " how the heck can you> walk",which> > is my question too, but somehow I keep going, slow andunsteady,> but going.> > Isn't it funny how those we live with don'teven think we are> sick? Wishing> > you all a great weekend, Marla> >>>> >> >> >> > _____> >> > From: Neurosarcoidosis >[mailto:Neurosarcoidosis ] On Behalf Of > >Sent: Thursday, November 01, 2007 10:23 PM> > To:Neurosarcoidosis > Subject: RE: question about handicap parking> >> >>

>> > Hi Marla> >> > I'm startingto have trouble with buttons but mostly I wear tshirts> & sweat> >shirts.> >> > I've been busy when I haven't been sleeping but thoughtI'd check> in.> > Everything is approved and I'll get the keys to thehandicapped> apartment> > tomorrow! Yea! I'll be able to go outsidewithout having to mess> with steps!> > While you guys had custody of mydoctors(LOL) I've been feeling the> need of> > my missed treatments.> >>>> >> > Join our Sock Challenge for Orphans in Kazakhstan> >http://groups. yahoo.com/ group/Mittens_ for_Akkol/> >> > > >grannylunatic@> >> > __________________________________________________>>

[Guest guest]

Couldn't you have stuck her beside you or stuck her on the back?? Just kidding! LOL Just responding to Tracie's remark. I can picture it now! LOL Debbietiodaat@... wrote: I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me! LOL!!! You brutal woman-- making mom drag along behind

you.... See what's new at AOL.com and Make AOL Your Homepage. Debbie T.Co-Moderator __________________________________________________

[Guest guest]

Or give her one too and have a parade......I'm sorry it's early in the morning here and I am kinda "nutty" right now. Just kidding . LOL Debbie PS Don't get offended.Debbie wrote: Couldn't you have stuck her beside you or stuck her on the back?? Just kidding! LOL Just responding to

Tracie's remark. I can picture it now! LOL Debbietiodaat@... wrote: I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me! LOL!!! You brutal woman-- making mom drag along behind you.... See what's new at AOL.com and Make AOL Your Homepage. Debbie T. Co-Moderator __________________________________________________

[Guest guest]

Actually Marla, I didn't even go!! I pleasantly told her that I didn't think I could handle it and she said "Oh, okay", but I still think she didn't understand why! Also, I had just started learning how to ski 2 yrs before I go sick . Going skiing was a way I could go with my kids and husband and make it a family sport. But it really sucked when I couldn't go anymore. I still have a pair of practically brand new boot and skis sitting on the rafters in my mud room . I keep saying I am going to get on them again one day, but.......... Debbie PS I understand.Marla Bramer wrote: Debbie the fact that you were able to do is amazing, when we have family over they always want to walk down to the lake, we live only 5 houses away from a so called lake, and we have a strip of sand that from our house to the lake, and I always say you go and have fun I’ll stay here, and they give me the “you wimp look”. We went to the mountains with family and I didn’t ski, I use to

love to, so my sister in law who just doesn’t ski, her and I decided to go shopping in the fun little shops so we did and I walked way too long, so when everyone was ready to go out and eat I just couldn’t I had to go to bed, and my other sister in law told my husband it is just my eating habits, if I started eating health food, (she is a vegetarian) I would feel better, I’m just sick because I eat wrong J don’t you just love it. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Sunday, November 04, 2007 7:06 AMTo: Neurosarcoidosis Subject: Re:

Re: question about handicap parking I can agree with the handicap placard. I use it too and I feel like everyone is staring at me. I can actually see the elder generation staring like I shouldn't park there because I am younger. I would be very, very upset if I got the note that you did, Shauna. My family , even my mother , can't seem to understand the fact of the symptoms I have. I agree with you there too. They make me feel very

uncomfortable when they ask me about daily events, like when I am going back to work, etc. ( I am on disability) Last spring , my cousin, actually asked me to go for a walk on the beach when it was still cold out. And if anyone is from the coastline, you know how hard it is to walk for a long time through the heavy sand. I have to bring my inhaler! Debbie Co-ModeratorShauna Glaspie <sglaspie2000 (AT) yahoo (DOT) com> wrote: I know what you all mean. I was once working in

an office building before I got my disability and I had already had my handicap decal. We had a parking garage and I would park in the handcap parking space because usually it would be free to use at work since not many people were handicapped there. I also parked there because it was right in front of the elevator and half of the time I couldn't remember what floor I parked on if I didn't park in the handicap spot. One day I came back to my car and there was a note on my car door saying "You do not appear to be handicapped so why are parking in this space?" I was so outdone that someone would actually write me a note

saying that when that didn't even know what I had been going through. The bad thing about it is that they didn't know me and they didn't leave their name on the note so I could respond. As you all know, most of us don't look like anything is wrong so most people don't think that we are sick. Many think that I can do things like they can and they start to think that I am not trying to do anything. I even have some family members that don't realize the extent of the condition. They don't realize how tired I get just from standing for long periods of time or walking into the store and they were with me during some of the worse times like memory loss, extremely bad

headaches,backaches, dizziness etc. But just because you look fine doesn't mean that you are. I wish I could do the things I used to. This started in my prime at 25 just when I was enjoying things the most and then it seems all of a sudden things changed. I was tired, in pain and uncomfortable from the weight gain from prednisone. I used to be 130lbs and balloon 205lbs on prednisone and currently down to 160lbs. My body doesn't seem like my own. And the worse thing is when people you know come up to you and say wow you got big as if I sat around eating myself to death or I did it to myself. Some people have no tact. But I keep going on and think I have

come a long way. I still have flare up and am still on prednisone so I don't think I will 130lbs anytime soon. __________________________________________________

[Guest guest]

Couldn't you have stuck her beside you or stuck her on the back?? Just kidding! LOL Just responding to Tracie's remark. I can picture it now! LOL Debbietiodaat (AT) aol (DOT) com wrote:

In a message dated 11/4/2007 1:24:30 P.M. Pacific Standard Time, mamadogrose (AT) hotmail (DOT) com writes:

I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me!

LOL!!! You brutal woman-- making mom drag along behind you....

Debbie, We gotta watch that Rose of ours! She has a hidden side that she doesn't share with us -- but really, dragging mom-- eek!!!!!!!!!See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Or give her one too and have a parade......I'm sorry it's early in the morning here and I am kinda "nutty" right now. Just kidding . LOL Debbie

Hey Debbie, I think you're onto something here-- Mother/Daughter drag races at Walmart! Think we can get them (Walmart) to sponsor? Maybe we could turn it into a fund raiser for sarcoidosis!

Hang on Mom, and if ya don't like my driving --get off my sidewalk!!!

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Shoot, if I'm on foot she leaves me in the dust! That woman can cover some ground, especially in Walmart.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rozebudz36@...Date: Sun, 11 Nov 2007 04:44:38 -0800Subject: Re: Re: question about handicap parking

Couldn't you have stuck her beside you or stuck her on the back?? Just kidding! LOL Just responding to Tracie's remark. I can picture it now! LOL Debbietiodaat (AT) aol (DOT) com wrote:

In a message dated 11/4/2007 1:24:30 P.M. Pacific Standard Time, mamadogrose (AT) hotmail (DOT) com writes:

I did feel weird at Walmart last night, riding the electric cart while my 85yo mother was trailing along behind me!

LOL!!! You brutal woman-- making mom drag along behind you....

See what's new at AOL.com and Make AOL Your Homepage.

Debbie T.

Co-Moderator

__________________________________________________

[Guest guest]

That woman can cover some ground, especially in Walmart.

Nothing like a woman on a mission-- even if it's a "shopping" mission! LOL!See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Debbie,

never give up, you never know maybe some day they will come out with an incredible

drug for Sarcoidosis, J

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Sunday, November 11, 2007

5:03 AM

To: Neurosarcoidosis

Subject: RE:

Re: question about handicap parking

Actually Marla, I didn't even go!! I pleasantly told her

that I didn't think I could handle it and she said " Oh, okay " ,

but I still think she didn't understand why!

Also, I had just started learning how to ski 2 yrs before I go

sick . Going skiing was a way I could go with my kids and husband

and make it a family sport. But it really sucked when I couldn't go

anymore. I still have a pair of practically brand new boot and skis

sitting on the rafters in my mud room . I keep saying I am going to get

on them again one day, but.......... Debbie

PS I understand.

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Debbie

the fact that you were able to do is amazing, when we have family over they

always want to walk down to the lake, we live only 5 houses away from a so

called lake, and we have a strip of sand that from our house to the lake, and I

always say you go and have fun I’ll stay here, and they give me the

“you wimp look”. We went to the mountains with family and I

didn’t ski, I use to love to, so my sister in law who just doesn’t

ski, her and I decided to go shopping in the fun little shops so we did and I

walked way too long, so when everyone was ready to go out and eat I just

couldn’t I had to go to bed, and my other sister in law told my husband

it is just my eating habits, if I started eating health food, (she is a

vegetarian) I would feel better, I’m just sick because I eat wrong J don’t you

just love it. Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Sunday, November 04, 2007

7:06 AM

To: Neurosarcoidosis

Subject: Re:

Re: question about handicap parking

I can agree with the handicap placard. I use it too and I feel

like everyone is staring at me. I can actually see the elder generation

staring like I shouldn't park there because I am younger. I would be

very, very upset if I got the note that you did, Shauna.

My family , even my mother , can't seem to understand the fact of

the symptoms I have. I agree with you there too. They make me feel

very uncomfortable when they ask me about daily events, like when I am going

back to work, etc. ( I am on disability) Last spring , my

cousin, actually asked me to go for a walk on the beach when it was still cold

out. And if anyone is from the coastline, you know how hard it is to walk

for a long time through the heavy sand. I have to bring my

inhaler! Debbie Co-Moderator

Shauna Glaspie

<sglaspie2000 (AT) yahoo (DOT) com> wrote:

I know what you all mean. I was once working in an office

building before I got my disability and I had already had my handicap

decal. We had a parking garage and I would park in the handcap parking

space because usually it would be free to use at work since not many people

were handicapped there. I also parked there because it was

right in front of the elevator and half of the time I couldn't remember what

floor I parked on if I didn't park in the handicap spot.

One day I came back to my car and there was a note on my car door

saying " You do not appear to be

handicapped so why are parking in this space? " I

was so outdone that someone would actually write me a note saying that when

that didn't even know what I had been going through. The bad thing

about it is that they didn't know me and they didn't leave their name on the

note so I could respond.

As you all know, most of us don't look like anything is wrong so most

people don't think that we are sick. Many think that I can do things

like they can and they start to think that I am not trying to do anything.

I even have some family members that don't realize the extent of the

condition. They don't realize how tired I get just from standing for long

periods of time or walking into the store and they were with me during

some of the worse times like memory loss, extremely bad headaches,backaches,

dizziness etc. But just because you look fine doesn't mean that you

are.

I wish I could do the things I used to. This started in my prime

at 25 just when I was enjoying things the most and then it seems all of a

sudden things changed. I was tired, in pain and uncomfortable from the

weight gain from prednisone. I used to be 130lbs and balloon 205lbs on

prednisone and currently down to 160lbs. My body doesn't seem like my

own. And the worse thing is when people you know come up to you and say wow you

got big as if I sat around eating myself to death or I did it to myself.

Some people have no tact. But I keep going on and think I have come a

long way. I still have flare up and am still on prednisone so I don't

think I will 130lbs anytime soon.

__________________________________________________