Re: Vacation Anxiety!

[Guest guest]

Lauri,

You can try a cane and see if it helps; however, to make sure you don't

completely wear yourself out, can you call ahead of time and see if they have

either a wheelchair or some sort of motorized cart that you could use? If they

do, then that would save you from overdoing it trying to " keep up " .

As for how people will react to your new " appearance " , if they know about your

condition and the meds it includes, then they will know that it is THAT that is

causing the change. I, too, have changed drastically (I look in the mirror and

don't even recognize the face looking back at me), and have come to realize that

I can't change it, no matter WHAT I do, so if people cannot accept what they

see, don't look at me! I have gained soooooo much weight thanks to prednisone,

that I sometimes feel like a freak, and when I go out in public, I get allot of

stares: I used to look at the ground when this happened, but have changed that.

Now when people stare at me, I look them straight in the face and if they

continue, I respond with : " Maybe one day YOU will have Still's Disease and be

on all the meds I 'm on-- including high doses of prednisone-- and have people

stare at YOU! You won't be in such a hurry to judge overweight people then,

will you? " It usually sends them on their way......

good luck and take care of yourself,

Chris

greywolf70@...

Vacation Anxiety!

Hi Everyone!

I am stressing so much over our upcoming vacation on Sept 17!

and I are heading to Disney World for 6 days; a vacation we take

several times a year. This time I am full of anxiety because I don't know

how I'm going to handle it.

We are going for an annual event that my best friend and I host in Disney

World. It entails a LOT of walking (6 days of getting up at 7am and

continuously going until about 11pm) There are 200 people signed up and

waiting for us to arrive. I've been in so much pain, especially when

walking, lately that I'm not sure how I'm going to hold up. (especially when

you add the heat in) I'm also nervous about how shocked people are going to

be when they see me - especially my best friend. (he lives in AZ so we only

see each other once a year or so) I look dreadful. Between the hair loss,

the weight gain, a definite limp when I walk and my skin being a lovely shade

of gray most of the time, I look like death warmed over.

The doctor (the bad bad one..lol) gave me a temporary handicap parking permit

so that will come in handy. Does anyone here use a cane or something else to

help them walk? Does anyone have any suggestions on how I can make it

through this week? I can't take too many breaks because there will be a

whole group of people dragged down by me.

Any ideas and suggestions would be wonderful!

Thanks

(((Hugs)))

Lauri

[Guest guest]

Dear Laurie I know myself, I push myself so hard with

family events and such that I end up in the hospital.

When your at Disney World take your time ,enjoy

everything around you. If your with friends they will

understand and will help you. We just recently had a

family gathering at my home, all of my family knew I

had just gotten out of the hospital, not one of them

helped me, not even my own husband or children. My

good friend who has RA came with prepattied hamb. and

other food and she did all of the grilling and helped

with the dishes. I really love her, she is a good

friend and I will do the same for her. So please take

it easy and let your friends help as much as they can.

And yes I do use crutches or a cane whenever I need

to, I don't think of it as anything other than an aid

to get me through tough times, just like my dear

friend. Have a wonderful time in disney. your friend

Kathyv

--- MZ67@... wrote:

> Hi Everyone!

>

> I am stressing so much over our upcoming vacation on

> Sept 17!

>

> and I are heading to Disney World for 6

> days; a vacation we take

> several times a year. This time I am full of

> anxiety because I don't know

> how I'm going to handle it.

>

> We are going for an annual event that my best friend

> and I host in Disney

> World. It entails a LOT of walking (6 days of

> getting up at 7am and

> continuously going until about 11pm) There are 200

> people signed up and

> waiting for us to arrive. I've been in so

> much pain, especially when

> walking, lately that I'm not sure how I'm going to

> hold up. (especially when

> you add the heat in) I'm also nervous about how

> shocked people are going to

> be when they see me - especially my best friend.

> (he lives in AZ so we only

> see each other once a year or so) I look dreadful.

> Between the hair loss,

> the weight gain, a definite limp when I walk and my

> skin being a lovely shade

> of gray most of the time, I look like death warmed

> over.

>

> The doctor (the bad bad one..lol) gave me a

> temporary handicap parking permit

> so that will come in handy. Does anyone here use a

> cane or something else to

> help them walk? Does anyone have any suggestions on

> how I can make it

> through this week? I can't take too many breaks

> because there will be a

> whole group of people dragged down by me.

>

> Any ideas and suggestions would be wonderful!

>

> Thanks

> (((Hugs)))

> Lauri

>

>

[Guest guest]

In a message dated 9/3/02 9:49:44 AM Eastern Daylight Time, MZ67@...

writes:

> Any ideas and suggestions would be wonderful!

>

>

Hi Lauri,

First of all, relax! (I know - easier said than done). Unlike some of

the folks on the loop, when I've traveled I've actually felt better. Maybe

the adrenaline, maybe the extra excercise, maybe my mind being on something

else besides my limitations. I don't know, but I have done surprisingly well

during very active times. Not to say that I am exhausted when I come home and

need to rest A LOT!

Anyhoo, I lived in Orlando for 3 years and had passes to all the parks

at one time or another. Since we had passes, I could come and go as I pleased

and never really overdid it on any one day. However a suggestion for you is

to rent one of their scooters. I couldn't tell you the cost, but you might

want to check that out. They go everywhere and you get to be first in line at

the attractions! Nice bonus if you can look for the silver lining. Plus the

people you're with might get to be on that earlier ride. You might want to

check this out before you leave - don't know how many they have or if you

need advanced reservations but that will certainly help you from getting too

worn out!

HAVE FUN!!!!

Love Carole

[Guest guest]

Hi Laurie,

Hon, speaking from past experience, please

ask to use a wheelchair. This will help save

your energy, and will save you from having

loads of pain so that you too can *enjoy* your

vacation. A cane helps, but with all of that

walking, be good to yourself and opt for a

ride. It helps with anything you might have

to carry also. Purse, things you might buy,etc.

Save your strength and energy this way,

and focus on having fun!

~~tricia~~

-- Vacation Anxiety!

Hi Everyone!

I am stressing so much over our upcoming vacation on Sept 17!

and I are heading to Disney World for 6 days; a vacation we take

several times a year. This time I am full of anxiety because I don't know

how I'm going to handle it.

We are going for an annual event that my best friend and I host in Disney

World. It entails a LOT of walking (6 days of getting up at 7am and

continuously going until about 11pm) There are 200 people signed up and

waiting for us to arrive. I've been in so much pain, especially when

walking, lately that I'm not sure how I'm going to hold up. (especially when

you add the heat in) I'm also nervous about how shocked people are going to

be when they see me - especially my best friend. (he lives in AZ so we only

see each other once a year or so) I look dreadful. Between the hair loss,

the weight gain, a definite limp when I walk and my skin being a lovely

shade

of gray most of the time, I look like death warmed over.

The doctor (the bad bad one..lol) gave me a temporary handicap parking

permit

so that will come in handy. Does anyone here use a cane or something else to

help them walk? Does anyone have any suggestions on how I can make it

through this week? I can't take too many breaks because there will be a

whole group of people dragged down by me.

Any ideas and suggestions would be wonderful!

Thanks

(((Hugs)))

Lauri

[Guest guest]

Thank you everyone for your words of encouragement and great ideas.

I had been toying with the idea of a wheelchair but was having a hard time

making that " plunge " . This trip to Disney World is something that my husband

and I do all the time since we are moderators on a Disney information

website. We have gathered hundreds of friends and aquaintances this way and

this is sort of a " family reunion " Most of them know that I am sick, just

not to this extent.

I'm a very tough nut to crack. Most people didn't realize for a long time

how much pain that I was in. It took almost a year for my employees to learn

that I was sick. I don't know why I do it, but I hate it when people " pity "

me for being sick. Might stem from when I was a child and it was

" unacceptable " to be sick. You were literally punished and shamed in my

family when you were sick. Needless to say I am getting zero support from

them except for the occasional " are you still sick? "

So far I have done this Disney Trip thing 6 times since I was diagnosed with

AOSD. Each time I push myself to the extreme limits. My personality was

like that prior to getting sick and it's hard to change. The last time I did

this with my best friend (August 2001) I had a seriously bad fever spike in

the middle of Epcot and collapsed. He said to me a few months ago that he

thought he had killed me..lol Since he and I were always active " go go go "

people I worried mostly what he would think when he saw me again. I asked

him today what he would think if he saw I was using a cane or a wheelchair.

He told me that a cane is cool - Willy Wonka used a cane and he was a cool

guy, and that a wheelchair would be awesome because he could sit in my lap

and let push us around. :-) So I guess I feel better knowing that

it's not the old " always running and on the go " Lauri that he cared about but

Lauri I am today. I know that might sound weird that I worried about

that but I actually had a friend once that stopped talking to me because I

was ill (at the time I was dealing with blood issues and they thought I had

leukemia). He told me I wasn't " fun " anymore. So maybe you can see my

anxiety here.

Thanks again for all of your support. It means so much to me to know that I

am not alone out there.

Love to all of you

Lauri

[Guest guest]

> Hi Everyone!

>

> I am stressing so much over our upcoming vacation on Sept 17!

>

Hi Lauri:

And I was thinking that old Dan was the only one freeking out about a

upcoming trip. I will be headed off to Reno Nevada to be at the

National Air Races Sept 19-20-21-22. I had in the back of my mind to

carry along my trusty old cane, just in case I come up needing it all

of a sudden. Will probably be forgetting the shorts and t-shirts and

be wearing bib coveralls, long sleeves and a straw hat. Bunch of us

have been meeting up out there for this annual event for a number of

years now. It is a good thing we have a block of reserved seats so

at least I will be where hopefully they might just recognize me. LOL.

And to think, last year they was saying, Hey Dan, what kind of a diet

are you on anyway? Now this year they will probably want to enter me

in a GIANT PUMPKIN contest for halloween.

Glad you ask the question to the gang of Stilligans Island first,

cause I was too chicken. But looks like they gave us good advice.

Thanks

Dan

[Guest guest]

I agree with the wheelchair. I'm not sick enough to own one, but I

bought it anyway, for such times. (besides, the dog LOVES to pull it) (I

rather think I'm like Santa). Once you use it, it's FANTASTIC for

weakness. I felt silly being pushed around the Chicago museum, but It's

VERY easy for the pusher, & I ended up having a fantastic time.

From Tom Kufahl

My dearest darling , I miss you with every fiber of my being.

My Web Site:

http://webpages.charter.net/tkufahl/tkufahl/publish2/index.html

Vacation Anxiety!

Hi Everyone!

I am stressing so much over our upcoming vacation on Sept 17!

and I are heading to Disney World for 6 days; a vacation we take

several times a year. This time I am full of anxiety because I don't

know

how I'm going to handle it.

We are going for an annual event that my best friend and I host in

Disney

World. It entails a LOT of walking (6 days of getting up at 7am and

continuously going until about 11pm) There are 200 people signed up and

waiting for us to arrive. I've been in so much pain, especially

when

walking, lately that I'm not sure how I'm going to hold up. (especially

when

you add the heat in) I'm also nervous about how shocked people are going

to

be when they see me - especially my best friend. (he lives in AZ so we

only

see each other once a year or so) I look dreadful. Between the hair

loss,

the weight gain, a definite limp when I walk and my skin being a lovely

shade

of gray most of the time, I look like death warmed over.

The doctor (the bad bad one..lol) gave me a temporary handicap parking

permit

so that will come in handy. Does anyone here use a cane or something

else to

help them walk? Does anyone have any suggestions on how I can make it

through this week? I can't take too many breaks because there will be a

whole group of people dragged down by me.

Any ideas and suggestions would be wonderful!

Thanks

(((Hugs)))

Lauri

[Guest guest]

Lauri,

First of all, don't stress about it or you will feel worse when you get there

because you may start a flare. Second of all, you will handle your trip and

duties one step at a time, with grace and dignity as usual. My first thoughts

when reading your email were: " What a wonderful opportunity! "

I gave up trying to keep up appearances a long time ago. I still do my hair and

makeup when I go out somewhere (unless it is to the doctor and I am feeling

miserable) and I still dress with class and style. There is a limit though. I

try to dress and act like I feel great, but I can't fake energy. The walk across

the airport to catch a cab to the doctor when I fly to Portland once a month is

more than I can handle. I just have them wheelchair me there. I get to rest and

talk about my illness to the person pushing me. So far, everyone has been

extremely interested. When we travel by car to places where there is a lot of

walking, like Disneyland, we call ahead and reserve a wheelchair for me. That

way, I get to enjoy the visit. Crazy thing is, my family is pushing me up and

down hills and such and I am STILL the first one to get too tired and want to go

home. It is amazing the perspective you get from a wheelchair. I find most

people are so much kinder. People will tell you how great you look and ask why

you are in the chair. I tell them I have Stills Disease. It has left me with

brains and beauty, but not much else. The pain and fatigue are why I am in the

chair today.

If you have to be there for several days, why not do the wheelchair standby.

Personally, I would do the whole thing that way and conserve my energy so I

could be at my best but I don't know how your energy holds out. I think you

would not be worried about it if you thought you had enough though. You could

have a little sign on the back of your Wheelchair that says " Victim of Stills

Disease, all donations to Stills Disease Foundation deeply appreciated. " If they

were to ask, you could say " I would be happy to forward that donation for you " ,

or you could have the address and web site URL on the card.(maybe some brochures

or at least an envelope with the foundation address / URL on little slips of

paper for them to take.) I would not ask for donations, but I would have a

modest, tasteful sign on the back of the wheelchair. I know for a fact that all

of my business associates would donate if they saw me in a wheel chair. They

admire your strength and determination to continue in spite of adversity.

You may be thinking that it would be difficult to find someone to " push you

around " =) but I know you won't have a problem. Think about the human spirit

when there is a crisis. What would you do if you saw your leader, spokeperson or

boss struggling to lead from a wheel chair. So, like I said, what a great

opportunity!... for you to experience human compassion and to promote the web

site / foundation all while performing your duties AND enjoying yourself. You

could schedule rest periods if you have enough energy... like 2 hours walking, 2

hours resting in your chair.

WHY ON EARTH would you want to push yourself so hard that you can only make it 2

days or so and then be miserable when a little " spririt of a sound mind " could

do wonders for your spirit, your body, your energy, your pain levels and maybe

even for the foundation. If you are brave enough to try the conference in the

first place, you are brave enough to ride in a chair off and on during the day.

Don't aplogize for being sick. You didn't do it to yourself. Let them applaud

your spirit and willingness to try.

I have faith in you. I know you can do this. Just be wise, and use good

judgement. Life is all perspective anyway, because the facts are only events as

seen through the eyes of the beholder.

Smiles, Caroline

Hi Everyone!

I am stressing so much over our upcoming vacation on Sept 17!

and I are heading to Disney World for 6 days; a vacation we take

several times a year. This time I am full of anxiety because I don't know

how I'm going to handle it.

We may not be able to change the direction of the wind, but we can adjust our

sails.

---------------------------------

[Guest guest]

>

> Lauri,

Go for the scooter, hot pink bandana and a Goddess of the Full Moon t-

shirt!!!

If you can't stun them with your outer beauty { which I am sure you can

internally, and probably externally too darlin!} , blind 'em with color and

speed!!!!

>

> ...GOTFM

>

>

> >

>

>

>

>