re: life

[Guest guest]

Kathy,

Have you heard of the website www.butyoudontlooksick.com ? It has this theory

called the " spoon theory " that helps explain your illness to others where

hopefully they will understand. Interesting site.

Terri

________________________________

[Guest guest]

I am the same way... esp when I try to explain that it's a form of RA... I have

even gotten skepitcal looks and comments like, " you're awful young to have

that " .  Just goes to show there needs to be more education.  It's also the

reason why I have never gotten a handicap placard for my vehicle.  I know a

girl younger than me and she has one and a cop actually asked her for

documentation.  She pulled it out and quietly explained that she has leukemia

and tires easily.  He at least looked ashamed.  See?  Even cancer doesn't

always have a face... sometimes Still's doesn't either.

 

I get out even when I am in pain.  I have said before, just b/c I have Still's

it doesn't have to have me.  I am glad for the positive attitudes I read

about.  Helps me know that life is still possible even with a chronic illness.

Gail

Subject: life

To: Stillsdisease

Date: Saturday, May 14, 2011, 2:25 PM

 

i try not to tell people how i feel sometimes because you look okay i am not

sure they beleive you i tell people i am on disability they look at you like you

crazy that being said i exercise on the days i can and not on others i go out

with my mom and stuff if you let it overcome you it will win

[Guest guest]

Gail

About the parking placard. I at first was so against getting one I fought it now

I am glad I have one as many times going into a store I am fine and boy the

looks I get but coming out wow big defiance heck I have even had people ask if I

need help! now mine you walking over a say 1/4 to 1/2 mile about dose me in at

times so that is why coming out I can look like death warmed over. I have been

hassled in the past and yes I am a get in your face kind of guy when that

happens. but I am sorry I waited I really am as now I can enjoy myself a bit

longer when I get out knowing I do not have to walk to the end of a parking lot

just because I went to get a gift for some one at the last minute because

that’s

when my SSDI pay came in . Some thing to think about.

But ya what dose ill look like? How about being disabled? I love when people

look or say thing loud enough for me to hear (I have bad hearing by the way) I

normally fire back with that kind of question then fallow it up with because ya

know I want to look just right for you so that you can feel good in you judging

people even when you so wrong. seen many turn red or get teased by there friends

when I do that but like I said I am a kind of in your face guy at times and for

some things and I always found I stuck up for people with difficulties even when

driving the buss they would make it late I did not care as I always beloved

treat then right as some day I could be you. How little I know in how fast that

would become true and it was me.

Hugs

 

 

 

The  Redneck  

Marty G     

 

In life there are few greater joys then the freedom of free will given to us By

God, the ability to love, the freedom to chose our friends, and the freedoms we

have been given and guaranteed by our founding fathers. Now if congress and the

President would just let us enjoy them instead of trying to interfere because of

there fear of them.

Marty G

5/11/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

I have been the same way. But over time, I have learned that keeping it all

in all the time has been bad for my health. That is why this board is so

good for me. I know I can trust my husband and family, but I try not to go

overboard with them too. It is hard on everyone. But I do have friends that

have chronic illnesses that I met at a support group and we blow off steam

all the time. When you have people that understand that you look OK, but

feel horrible, it really makes a difference. When I first got sick, I'd say

the first three or four years, I wouldn't tell anyone how I felt. And you

know what? It made me emotionally worse, because I was holding all my

emotions in.

I guess I am encouraging people that do this to reach out here, build

friendships and even have offline discussions (one-on-one) friendships with

people they feel they can connect with here. For one, I am always

available. I live in TN now, but still talk to all my friends in WA State.

We have free long distance. There is also SKYPE for those of you that don't

know about it. You go to www.skype.com and can install it on your computer.

there is a free version (of course they want to sell you a package deal, but

you don't have to do that - we didn't). Skype lets you have video chats with

people you invite (and only people you invite and that they have set up on

their computer also.

I just want people to know that want to talk individually, that I am

available. I have spent hours and hours dealing with this disease for over

10 years. Not nearly as long as many here, but a long time, many hospital

trips, many hours with my pain consoler and many hours talking about this

with my husband (who has his degree in Phych and teaching). But mostly, I am

just here for anyone that wants a listening ear. You can first contact me

at my email at allisonssong@... - especially those of you that have

just been diagnosed. I so remember the heartbreak and emotional pain. not

just the physical side.. But of course I am here for anyone that just wants

a friend that is also chronically ill. I am not crazy (you can ask if

you want)

Before I was sick, I was a VP of Information Services for a company similar

to UPS (But a Global Company). I had worked there for 14 years and had many,

many employees. I never, ever thought I would have to go on short term

leave, let alone long term leave and then have to give up my job. But it was

to stressful and my doctors insisted. Now any stress at all, sets off a

horrible attack. Anyway, that is just a short story of what happened.

But to those that feel that they have to hold their emotions in. I totally

understand, but I also caution you, because I know what it did to me after

years of doing that.

Hugs to all, Have a good day,

Alli

[Guest guest]

During a recent flare up I was waiting for a bus. When it arrived I asked the

driver to put the ramp down for me because I couldn't make the step. He looked

at me and said 'you don't look disabled to me' and refused to help. There wasn't

much I could do so I took a step back and let him drive off. At that moment

anger took hold so I made a fist and furiously shook it at the bus. However, due

to my swollen fingers I couldn't form a fist properly so actually the gesture I

ended up making was far more rude!

It still surprises me that if you are not in a wheelchair or missing a limb,

people will not recognise you as being disabled or in need of additional

assistance.

Fiona

i tell people i am on disability they look at you like you crazy

[Guest guest]

Fiona,

I would call the bus depot and tell them what happened and say that was

discrimination and that you were gonna sue them now!!

Either that, or next time he doesn't want to get the ramp down, S-L-O-W-L-Y sit

on a step and get in the bus in a crawl and then crawl on all 4's to the

seat..and get off the same way..

What a jerk he was!!

Sorry that happened to you!

Diane..42

Re: life

During a recent flare up I was waiting for a bus. When it arrived I asked the

driver to put the ramp down for me because I couldn't make the step. He looked

at me and said 'you don't look disabled to me' and refused to help. There wasn't

much I could do so I took a step back and let him drive off. At that moment

anger took hold so I made a fist and furiously shook it at the bus. However, due

to my swollen fingers I couldn't form a fist properly so actually the gesture I

ended up making was far more rude!

It still surprises me that if you are not in a wheelchair or missing a limb,

people will not recognise you as being disabled or in need of additional

assistance.

Fiona

i tell people i am on disability they look at you like you crazy

[Guest guest]

Hi Fiona. You should call the transit company and let them know what happened. I

know transit authority here would want to know so they could talk to all the

drivers about being sensitive to everyone's needs, especially invisible

disabilities. Good luck.

Take care,

Bari

> During a recent flare up I was waiting for a bus. When it arrived I asked the

driver to put the ramp down for me because I couldn't make the step. He looked

at me and said 'you don't look disabled to me' and refused to help. There wasn't

much I could do so I took a step back and let him drive off. At that moment

anger took hold so I made a fist and furiously shook it at the bus. However, due

to my swollen fingers I couldn't form a fist properly so actually the gesture I

ended up making was far more rude!

>

> It still surprises me that if you are not in a wheelchair or missing a limb,

people will not recognise you as being disabled or in need of additional

assistance.

>

> Fiona

>

>

> i tell people i am on disability they look at you like you crazy

>

>

[Guest guest]

 Fiona

 I was a city bus driver and I believe according to ADA law you do not have too

prove your disability to any one such as a bus driver! . what I would do is one

call the system up and ask them about there policy on people with disability's

that do not show as a first step.

 then what they say to do do next time and if a driver passes you or refuses to

help then call and turn them in period as driver like that piss me off and I

worked with many like that . they believed the only reason there were passengers

is because they were there were I knew I had tat job only because people needed

my help and had demanded tat service and I was there to serve them not then

serve me .

now there are dirty tricks drivers can pull believe me so I can also let you

know about some of them also so if you have any other questions let me know and

this go's for any of you reading this as being disabled is hard already with out

an  A Hole  making it worse. If you live in an area like were I drove the buses

only come around about once an hour so a drive doing this makes things very hard

and why I believe they need to be turned in as what if missing that bus makes

you miss a doctors appointment or your ability to get your meds things like that

..

Yes I get angry to this day about things like this but its the same mind set

that makes the comments of why are you parking there you don't look disabled or

your just being lazy what is some one that need that comes along . yup heard all

of that directed to me at one time or another and yes rarely do I let it go as I

am a in your face guy on things like this and I take it as an opportunity to

teach you a lesson on stills disability's and also your stupidity!

hugs 

 

 

The  Redneck  

Marty G     

 

________________________________

Subject: Re: life

 

During a recent flare up I was waiting for a bus. When it arrived I asked the

driver to put the ramp down for me because I couldn't make the step. He looked

at me and said 'you don't look disabled to me' and refused to help. There wasn't

much I could do so I took a step back and let him drive off. At that moment

anger took hold so I made a fist and furiously shook it at the bus. However, due

to my swollen fingers I couldn't form a fist properly so actually the gesture I

ended up making was far more rude!

It still surprises me that if you are not in a wheelchair or missing a limb,

people will not recognise you as being disabled or in need of additional

assistance.

Fiona

---

[Guest guest]

Fiona,

I love your post! It is so true!!! I once had a walking boot on my foot

that I fractured from just walking and we happened to be going away. I had

help everywhere we went!!! The next time we went away, I was really sick. I

even had a doctors note stating that I would need help, etc. I got the help

I needed, but you should have scene the looks I got from people around us,

like we were trying to cheat people out of getting in lines, etc. It was

crazy.

It was bad enough having to use help, but then the horrible looks - I hated

it! But when I was walking with the boot on my foot, everyone wanted to

help! Nuts! Right?

Oh well. I guess that is just our cross to bear in life. J

Hugs to all,

Alli