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#449196 08/10/11 01:07 AM
Joined: Feb 2010
Posts: 96
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Apprentice_AS_Kicker
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I went to a movie the other day with my girlfriend and she wanted to sit in the front and I told her well that is not good because I have to be able to move around or the pain comes on fierce. So I began thinking about my bag of tricks that follows me when I go out on the town, to a concert, etc. I usually have a backpack with hot water bottles, NSAIDS, Icy Hot patches and ginger (great for nausea and the gut and I that lead me to this question to my fellow brothers and sisters in AS. What preperations do you take when going out, or to a movie, concert, play, etc. Social norms tell me I can't stand at a concert, play, movie unless it is warranted (I went to a Bright Eyes concert in April and there was no sitting so that worked out). My gal and I used to love to go to the orchestra and listen to a more "nose in the air" kind of show, but standing would not be tolerated so it has been a couple of years since we have gone. Any tricks that I am missing? Any good memories from venturing out into the world with your AS fully loaded? Any funny stories? I usually get an odd look or two with a backpack, but most places are understanding, knowing I am not selling narcotics.


Pride makes us artificial and humility makes us real.

Thomas Merton
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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when i worked at a university in virginia, they had a wonderful small theater, with excellent acoustics. and they had some excellent performers.

my favorite two that i saw multiple times were paul galbraith, a classical guitarist, and keb mo, a blues singer / songwriter.

i almost never go to concerts, but these i wanted to go to.

it was a small, very personal school. so i contacted them, told them my physical challenges, asked if i could come look at the theater during the day sometime and did.

biggest problem is i can not sit in theater / stadium seating. but i can sit on the front edge of an isolated small chair. especially if i can get up and down as i need to. or can sit on the stairs of a stadium or theater if they have that sort of thing.

in this particular theater, they had a lone chair or two in the back, for workers, etc, but they let me sit back there (i had to pay full price for "good seats" but really the theater was so small, even back there was still a "good seat". my husband sat up front. can't talk during a concert anyway, so don't really need to sit together. just found one another at intermission, at the end.

that worked out very well. i could sit back there some, stand back there some.

i haven't been to the movies since 1994 (i like watching them in the comfort of my own home). i actually stopped going several years before i couldn't go.

i probably wouldn't go to a big concert unless it was outside and i knew i could both stand and sit as i needed to.

most people though are accommodating if they know we have issues.

i go to a conference for my work about once a year. have been a few times when i've been in a flare. mostly they will let me take a chair out of a row and sit against the back row with people in wheelchairs. but one time they told me it was a fire safety hazard for me to be sitting there even though i was sitting right next to someone in a wheelchair. when i asked why they could be there and i couldn't, they just kept repeating themselves. i felt so discriminated against. of course i'd never wish to be in a wheelchair, but it does make me mad sometimes that because i have an "invisible illness", i don't get accommodated sometimes. thankfully its not too often.

the other time i remember having an issue, is when i couldn't sit at a booth and they had a table available. but they said it was reserved if someone in a wheelchair came in. when i told them that this was a special birthday dinner and i too had a chronic illness that didn't allow me to sit but in special ways, they finally did relent, but again, they were not very nice about it.

i almost went to an outdoor summer concert this year. would have been standing only, on blacktop i think. so thought about buying a cane that has a seat on it. or maybe taking camping chairs. then i flared. but one of these years, i will probably try that if its someone really special i want to see.

i just reserve my "spoons" for special occasions. and i'm ok with that. i mostly would prefer being outdoors walking around amongst nature anyway.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Major_AS_Kicker
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Last week I took my girls to see the new Harry Potter movie. This was several weeks after the movie came out. We went for the first showing in the morning and got there early. The place was empty when we got there, so we were able to pick out the best seats, right in the middle just behind the isle that separated the front section and the back. The seats were fairly comfortable and since there we no seats right in front of us, we were able to put up our feet. I might have walked a little slower then usual when we got out, but I did fairly well.

I always keep a water bottle in my purse, as well as pain meds. When my UC is flaring, I usually keep a zip-lock bag with some undies tucked in it. I keep extra clothes, water bottles, pillows and some instant hot/instant cold packs in a bag in the car. I was a good Girl Scout, "Be prepared".


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
Joined: Apr 2009
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Gold_AS_Kicker
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Gold_AS_Kicker
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my biggest problem nowadays is standing up after sitting for that long. if there is a chair in front of me with no one in it: that is the best thing. or hubby on one arm, daughter on the other. I actually got to sit on the beach and stand back up this weekend with their help. yay. it was kind of fun.

i used to have raging sciatica and sitting was a real problem. an ice pack kind of helped that, along with lots of wiggling.

good discussion. very helpful!

Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Well when I do go somewhere like that it's just kind of understood in my family that most likely I will be up and down. I do try and be prepared like taking my meds (pain) to help lessen issues but like at the movies I spend alot of time against the back wall..lol same at concerts but overall I get by.


Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.

Joined: Nov 2003
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Oh I so know what you talking about...


Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.

Joined: Mar 2002
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My father had AS and he always would sit on aisle so he could get up and stand for a few moments. I did the same when my AS was at its worst.

It is not only individuals with AS that do this... I worked with individuals with back issues unrelated to AS, they would do the same.

If you get up, stand off to the side so not obstructing anyone... do a few back stretches while standing and then sit back down most people will be very understanding.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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Decorated_AS_Kicker
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J
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I stopped going out to concerts/plays/cinemas about 3 years ago when AS stopped me working.

The only exception was when I booked a "Gold Class" seat for "Star Trek" - Gold Class has massive, electric controlled recliners in an "up market" version of the cinema. They even bring you your food and drink. It costs about 50% more than a normal ticket, but during the week, it's a lot cheaper.

James


I ache, therefore I am

Joined: Apr 2008
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Journeyman_AS_Kicker
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Journeyman_AS_Kicker
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Jimmy, you must be a fellow trekkie. It is agreeable to meet you grin

Usually when i go to the theater I'll walk over the entrance area where no one can see me and do some stretches. At my theater you can still see the screen from this area. i once watched a whole movie standing over there.


"Experience: the most brutal of teachers. But you learn, my God do you learn." -CS Lewis
Joined: Jan 2010
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Major_AS_Kicker
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My biggest problem is going to events at our local community hall. Only a small commmunity, and no disabled parking spaces - but even if there were, there would be a lot of people wanting to or eligible to use them. If I can't get a park reasonably close to the door, I have on occasions ended up just turning around and going back home again. If I really want to go to something it means turning up far too early, then I just have to sit longer. Also, its a long way to walk in to the hall, and sometimes by the time I have sat there (on not good seats) for a couple of hours its all just too hard. My job takes me all over our local community and I seem to be coming and going all the time, so I think its difficult for people to realise how disabled I actually am, or that the effort of going out in the evening really is just too much.

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