How did I miss this discussion?! Love everyone's ideas!
I would take out the word arthritis for that word confuses people.
I would say:
Psoriatic Inflamatory Disease which is am incurable disease that not only attacks my skin but it also attacks my joints. Side effects of this disease are fatigue, swelling, pain and at some cases deformity. I am taking medicine, which is an immune suppressent. So please be kind and not cough in my face.
On the other side of the card:
My new motto: Yes I have PsA but it does not have me.
I am enjoying reading all of these; they are so cool! I would love to see pictures of them when you guys finish working your magic on them.
Catherine- I love that! Its so simple, but really says all that it needs to.
My name is Claire and I have Psoriatic Arthritis
I am glad you think I look well;
It truly brightens my day (smiley face)
I dont want to use this handicap tag,
I would love to walk and park farther away.
My life is so much different now,
All because I have PsA.
Then on the back I would put some websites for information about PsA.
I love these post.
If you think I'm walking weird, it's because I have a disease that causes my body to eat away it's own bones and for an occasional snack, my arteries. My doc told me that if I don't take this medication that is considered poison, I can deduct 10 years from my life and possibly will be in a wheelchair. Don't treat me different, just try to understand why I'm moving so slow and by the way, I don't want to hear about your arthritic knee from a skiing accident.
Love the “by the way” part! How often have I wanted to say that!
I love this that would be good for me to hand out so people wont look at me like i am lazy. i am all for it:)
Hello Seenie, my card sounds kinda bitter, I don't want it to sound that way. I guess I'm still just a newbie that is kinda pissed off at PsA and all that it brings. I'm really a happy person and I'm sure, given time, I'll be a "little miss sunshine" again but for now, I"m not too happy about all of this stuff. It's kinda hard when you have to tape your fingernails to your fingers when you go to work so they won't fall off while changing a dressing on a surgical patient. And By the way, thanks for the friend request acceptance. :-]
OK, go ahead, be Little Miss Sunshine! Whatever … LOL!
I had a pedicure last week. Nice. I usually mention to the pedicurist that the white stuff under my toenails is psoriasis, not fungus, don’t worry about it. The tech was very nice and said it wasn’t so bad. She’s right, it isn’t. And then I heard myself saying “What IS bad, is that I have psoriasis in my joints.” Not exactly true, of course, but you should have seen the reaction! She and the pedicurist next to her went slack-jawed with shock and it was all “OMG, that’s awful!” And “We never knew that could happen!” And I explained that it could indeed, and its technical name is psoriatic arthritis, and it destroys bones and joints.
So how is that for a short and punchy explanation? I have psoriasis in my joints …
Worked for me! I think I’ll use that one again.
That is awesome Seenie! Very well written
Seenie said:
Need your opinion, if you don't mind. I'm getting ready to post on my facebook wall, but I want to think this through before I do it. How about this --
First, pro golfer Phil Mickelson, and now I'm revealing mine. I have the same kind of inflammatory arthritis as Phil, and it's eroding the joints and bones in the middle of my feet. Walking and standing hurts a lot and I tire really easily. These days, I'm travelling with a wheelchair. That explains why I don't get out so much, in case some of my friends were wondering where I am.http://www.arthritistoday.org/news/mickelson-reveals-psoriatic-arth...
I'm considering it. What are your thoughts, either on the concept or what I've written. Thanks, folks!
After the day I have had I think mine would say: I have PSA and it sucks! Yes I look good and yes I don't look like I have a disability but guess what I do! Don't judge me for what you don't understand, I don't judge you because of your ignorance.
I have spent the last 3 weeks traveling- running thru airports, catching shuttles, getting rental cars, standing and training 8 hours a day, entertaining clients, driving thru ridiculous amounts of snow, etc and today I had to get wheelchair assistance to get from gate A to gate E, I simply couldn't make it today. The looks I got made me feel awful. I have always tried really hard not to judge people and it just pisses me off that people judge me without having a clue.
Thanks for letting me rant, I feel better!
I'll be traveling with my mom in just under two weeks. NY to Seattle and back, with just a one night stay. I don't need wheelchair assistance, but my mom does, which is why I'm traveling with her. I'm looking forward to not having to wait in ridiculous lines. I'm not looking forward to how many days it will take me to catch up from the experience.
Does anybody really think that you would use a wheelchair unless you needed to? Although I was reading an article recently in the New York Times about people using wheelchairs at the airport who are 100% able-bodied, to take advantage of the situation. It sounds as though last minute requesters are looked at poorly. I'm curious, do you carry a handicapped parking pass or anything similar with you, to avoid problems with airport personnel. Clearly you have to make the decision on the fly, if you are too fatigued to make it on your own. Are you at least home now, and able to rest up a bit?
MAT said:
After the day I have had I think mine would say: I have PSA and it sucks! Yes I look good and yes I don't look like I have a disability but guess what I do! Don't judge me for what you don't understand, I don't judge you because of your ignorance.
I have spent the last 3 weeks traveling- running thru airports, catching shuttles, getting rental cars, standing and training 8 hours a day, entertaining clients, driving thru ridiculous amounts of snow, etc and today I had to get wheelchair assistance to get from gate A to gate E, I simply couldn't make it today. The looks I got made me feel awful. I have always tried really hard not to judge people and it just pisses me off that people judge me without having a clue.
Thanks for letting me rant, I feel better!
MAT, what a time you’ve had! Good for you, though, for requesting assistance. It’s sad, isn’t it, that others judge when you’ve always tried not to. If I’m not on my scooter, I always request assistance in advance. If I’m having a reasonable day, it’s easy to thank them and say I think I’ll manage OK.
Stoney, you’ll never have problems with the airline personnel, unless you request assistance at the last minute. Airlines organize their assistance ahead of time based on what you said you needed when you reserved. The problem, if you want to look at it that way, is your fellow passengers, who regard you with a skeptical eye. (And, from the sounds of the NYT article, with some justification. Must look that article up … Or maybe I don’t want to.) But having said all that, keeping your handicapped parking tag in your purse just in case is a good idea. Maybe I’ll do that and put it on a lanyard and wear it as I get wheeled through security. Or perhaps wave it like a flag at passengers who may be doubting my need for assistance. I’m kidding, of course!
I’ve found that my mobility scooter attracts only sympathetic reaction: I guess others figure that nobody would go to that expense and trouble if it weren’t genuine. And come to think of it, they’re right! I hate needing it, but I do love my scooter! It has given me back some of my independence.
I've never told a sole that I have Psa. Why would I?
You’re right, Chris. If your PsA is not affecting your mobility, your energy levels, your appearance, your mood or anything else anybody would notice, why would you indeed?
Oh yeah, well, I guess there are many of PsA'ers that can not hide the fact that something is wrong. Duh, I never thought of that. I'm simple sometime's. Same with P. I've been lucky so far and I've been able to cover up most of my P in the summer time with Durablend. I still get the occasional "OMG, what the hell is that!!"
Right again, Chris. You have been very lucky.
Eh, lucky with PsA thus far, but man this skin. If I had a choice to go back to having severe PsA and clear skin I might just take it. For the people who have to endure both, I can not imagine.
This is well said I like this alot! :)
Kirsten said:
I do not think it is silly, infant I might make some.
They would say:
I have PsA. Some days I need a wheelchair, canes and, splints.
I live in constant pain and fatigue. I do not tell you this for sympathy
but for understanding.
There will be times I simply will not be able to do something's; due to
pain, fatigue or meds BUT it will never, ever
be because of you. Please take heart and find out all you
can about PsA so you too can spread the word.
The “psoriasis of the joints” thing isn’t, of course, a medically accurate description. But I’ve used it in many situations where I need something really short and simple. Like with my pedicurist. (By the way, I consider pedicures to be the only fringe benefit of my PsA: my toenails are kind of gnarly, and my hips make it difficult to reach. I love justifying the indulgence!) Saying that I have “psoriasis of the joints” is:
- Short and snappy
- Makes 'em wince and cringe every time (and sometimes go eeewwwww, LOL)
- Doesn’t remind them of granny’s arthritis or or the arthritis they got after breaking their ankle skiing.
Works really well for me.
PS this month my nails are a lovely coral-y red. LOL