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View Full Version : sorry..new here, just needed to type this out


issa
02-12-2001, 10:59 AM
I am new to the dis and really enjoyed all the information here and the wonderful people. I hang out at the theme parks board and the comm. board. I did read the insensitive thread and it made me all the more aware of disablities(I coundnt help but cry at times).


I just posted a thread with ?'s about fibro M on the community board (never even occured to me to post here ..sad isnt it) I have had Lupus for 5 years now. Some really rough times and some really good ones. I live fairly well with it. The doctor recently suggested fibro M for some new symptoms I'm been having. I know its a sister to lupus and it is a hard disease but geez..my minds spinning but its not spinning about the disease..its about the possiblity that I am disabled..it neever occured to me! A wonderful person posted about it and gave great info..but referred to it as a disablity and to come check out this forum.... Now that Lupus is a disability may sound obvious to you. .. even to me regarding OTHER PEOPLE because I know it can be hard but never applied it to myself. I have dealt with the fact of life or death..quality of life and such forth. I make every moment count with my daughter.. but by god I never ever thought to say disable in context to me...it is like a light just dawned. I know this is long and I am babbling but geez..it never even occured to me. I knew I would have to take it easy at the world, But all of a sudden I am thinking..what if I do get tired..what if I do need to rent a wheelchair! I dont look sick!. I guess I was even fooled by myself for not looking sick. (that sounds so dumb right now.)


sorry..just needed to vent and let this out.
I'm in a little shock.

tammyh-oregon
02-12-2001, 12:33 PM
AS you read the other posts on the board you will see that we try to encourage everyone to do what is best for them. It is sad that so many feel guilty about renting wheelchairs or ECVs at WDW. It took me several years before I was comfortable with using the wheelchair and lately I have been trying to use the cane more because of the looks, etc. But we must learn to do what is right for us. I would never survive a whole day at Disney with just my cane and there is no reason why I should not do what I need to enjoy my day just as much as anyone else. I find it sad the number of people who come to this board and say they worry about renting a wheelchair because of what others might think. My attitude is the heck with them I'll do what is right for me. It took me many years to realize this. I hope you find what you are looking for on this board as I can't help you with the Lupus. I can only encourage you to do anything to make your trip as enjoyable as possible. Have fun

Tammy

SueM in MN
02-12-2001, 01:25 PM
Welcome to our little community. We have sort of the same feel on this Board as on the Community Board. On some of the others, like the Theme Parks Board, they are so busy that they have to just stay focused on WDW. Wheelsie and I both feel that if it's related to a disability (or life inconvenience, if you aren't ready for the "D" word yet), it is welcome here. Some of the people who visit here have been dealing with disabilities (themself or a loved one) for many years. Others are not quite able to say they have disability. Anyone is welcome. I

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Puffy2
02-12-2001, 02:20 PM
You may have already read that I just returned from Disney with my best friend and soul mate who has lupus. SHe has been diagnoised for oh, 3 - 4 years? and before that was labled "chronic fatigue syndrom" - sometimes I think it's better to have a diagnosis. As you know, the course of the disease varies from person to person - some really struggle , some have lesser symptoms. As far as renting a wheelchair - do what is best for you . If you fatigue easily, go for it - Epcot wears me out!And it certainly would have worn my friend out. THe ECV is worlds better than a wheelchair - you will feel more independent and no one has to push you (they might even have to run to keep up!) It was great fun - I don't think I've heard anyone say that about ECVs on this board , but I figured, if you have to use it why not make the best out of it. As far as other people, I just plain didn't LOOK at them so I don't know if they were staring or not...well, ok they were staring the night we went to Epcot but that was probably more because we had on Jasmine outfits (my friend calls them "outsuits") and were ...drunk (?)... tipsy maybe...
Enjoy. We had a blast. Can't wait to go again. If you have any questions, ask away.

teri
02-12-2001, 04:54 PM
I'm sorry if I blew you away by referring to your condition as a disability. I do consider it a 'hidden' disability, because it does affect some people's ability to do things, to enjoy activities the way that unaffected people can. I have been partially disabled by my arthritis and asthma for a few years now, and I used to work with people with disabilities (hidden and obvious) before that - I tend to be very direct. I apologize if this hurt you in any way. It may not be a disability to you, it may just be a difference, which is OK. And if it comes to pass that you do get tired, or you do need help, it will be there for you. You will still have a life. You can still take vacations. The pace may be different, the activities may be different, but you can make it work.

{{{{{hug}}}}}}

http://www.wdwinfo.com/sites/family/galc.gif
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

Wheelsie
02-13-2001, 12:21 AM
WELCOME!!! *hug* I greatly mirror all the feelings and thoughts stated here....I have been in a wheelchair from birth...(as you may know if you've ever heard me ramble on LOL) I dont like the D word sometimes either....or many other terms society puts on the handi community...as you can see (or have seen) when I post I don't use those words...I use "handi".....it tells people that...Yes I do walk differntly than you do (waaaaayyyy diffent LOL) but Im very HANDY to have around....yes you may need to make an adjustment or 2 to accomidate the situations...but if you're willing to do so then I can and will be the best person for the job!! :)

So do I think you should go to WDW and rent a chair/ECV for instance when you are weary and neeed rest? HECK YES!!!!!!! You go to WDW... you enjoy yourself..and dont listen to ANYONE who makes you feel like I don;t deserve to have fun just like the rest of us!! :)

As for the dreaded D word.....if you don't like...just don't use it :D....you are what you see yourself to be....and no one else or nothing else will ever change that as long as you stay true to the only person that matters....<font size=4> YOU!!!!!</font size>

*rolls down from her specially ramped soapbox*

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

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issa
02-13-2001, 06:05 AM
Wow... you all are so generous with your words and comforts. I appreciate them. (thanks teri HUGS)


its ok now, LOL ...I got a grip, re-focused myself and had a reality check .

It just surprised me that I had something that for many is a disability and at times is for me as well. Just had to remember that I am still just who I am. The lupus has change perhaps the way I handle situations..but I just looked upon it as just everyday life and not an interference with life. I forgot that I think about things like the sun or how many stairs there are. But ya know...it is life.


I think this was just a tip off. Last week I had a rough time with the storm and some stress which resulted in a flare up. I went to the doctors where the nurse came in to get a briefing of the reason why I was there. I told her the issues and some of the "new" ones. She really struck me as odd because she kept saying.." that's just horrible, you’re too young, these things just aren’t fair, how are you doing{insert pity look here}, and well you get the drift......I looked at her, I'm sure, like she was dafted ! I'm not to young(perfect age for lupus!) and my life is not bad. Sooooo I went back to work and the nurse on site basically did the same. Asking if I needed a wheelchair (I had walked in perfectly well) and then assumed many things about me that werent true based on my condition. Topped it off with noticing I have a child (in report) and asked if I had made "arrangements for the little one". Now I have had this for 5 ears and have never been treated this way. Treated as though I am unable to live. SOOOOOOO when the word disabled came up it just kinda stuck everything together. sorry for the confused babble above LOL.

I am much better in my mind state once again thanks to my beloved and to all of your wonderful posts. I think I just had a taste of what makes the dis so special. IT'S YOU GUYS!!!.
I am glad I found this board and look forward to spending a lot more time here.

jeez..all this writing from a girl who doesn’t like to

[This message was edited by issa on 02-13-01 at 09:10 AM.]

teri
02-13-2001, 08:53 AM
issa,
I chatted with loki last night... he's a keeper! Take good care of him!
:)

http://www.wdwinfo.com/sites/family/galc.gif
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

sncbird
02-13-2001, 12:36 PM
Hi Issa,

I'm a 32 woman with Limb-Girdle Muscular Dystrophy. I found my way to this wonderful board about 2 months ago. Believe me when I tell you it's a GOD send!!!

I don't use the 'D' word either. I just started using a manual wheelchair so my husband, kids and I could go to the zoo, mall etc.. I don't refer to my wheelchair as a wheelchair - around my house it's called the "2000" (the year I got it). For me, I had in my head people who need wheelchairs can't walk period end of story. So, if I needed to use a wheelchair that means I couldn't walk anymore and believe me when I tell you I avoided it at all costs. I didn't want anyone to think I was giving up or being lazy so I struggled and struggled and struggled.
As alot of my friends here know, it took my dh 2 years to convince me to go to WDW.

Anyways, using my "2000" has made my life alot easier!! Nothing else has changed (my dh, kids, friends etc..) What has changed is I've gotten to see the entire mall not one or two stores. I've been to the zoo and I'm going to WDW this October. These things would not be possible if I didn't use my "2000".

You can call your condition anything you want. Whatever makes it easier for you to deal with. The condition doesn't change - just the way you think about it does.

I'm glad to read you're feeling better about things. We all have our bad days. That's why we have each other to lean on!!!
(BIG HUG)

One more thing, if I had a dollar for everytime someone told me...you look so good, you don't look sick or you're so young.... My WDW trip would be paid for and then some!! LOL

:cool: :cool:

http://www.geocities.com/maryjomw/cindglobe_10536.gif

SueOKW
02-13-2001, 01:54 PM
This board is just the best! I just get good feelings from the camaraderie we all share. And this post has just reminded me of that.

this make me think of Carol King's song..."You've got a Friend"... sniff sniff!!!

Sue


39 days and counting - Orlando, here we come!

<img width="200" src="http://www.geocities.com/dmurphydis/cleveland.gif">

BuckeyeBelle
02-13-2001, 03:47 PM
Hi Issa!
You found a great place here on this board! IMO it's all about abilities: ability to have fun, ability to handle tough situations, and ability to help each other. I've been reading here since it started, though I don't seem to post much because eveybody here is sooooo great and knowledgeable sometimes I wonder what I could possibly add. But I just wanted to say hi! Good Luck with evrything! :)