Out Of The Shadows and In Your Face…

Okay… let me start out by saying I didn’t realize just what a raw nerve this was with me until I read the response to this…and I will warn you this is a rant…

This all can be found here… sorry… I just want to make sure that I live up to what I preach to my kids…

I posted a comment on TLC’s What Not To Wear… they are finding people who are willing to go through the drill for $5000… they want people in New York, so I figure I’m pretty safe not getting picked… I’m hoping SOMEONE SOMEWHERE stops and thinks… and maybe “PEOPLE LIKE ME” will get picked to be on the show so we can dome out of the shadows…

 

Clinton… Where is the information on how to live with RA and dress in something other than “comfortable” things like sweats and anything that doesn’t necessarily button or zip? How do I shop for shoes that will look human (not herman munster and not the dreaded running shoes) and that you can stand to wear on your flaired feet? You are one of THE people who are in the know on RA and I can’t find anything that will help me to look less fat and frumpy. Something to do with my Methotrexate affected hair and something that will make me look/feel more like a “normal” 40 something woman who can make a difference?

<insert supportive responses>

…….Response that set me off this morning….

 

This is a link from an older Oprah magazine article written by Adam Glassman. I’m not sure if it’s the same *exact* problem, but definitely this is a possible start. Hope it helps.
http://www.oprah.com/style/Apparel-for-People-with-Physical-Challenges

……… End comment…
—– Now for my response —

I know, and I can FIND articles on how to dress when you have physical challenges… My degree is in Information Science with a special concentration in Human Computer Interaction and Online Retrieval… I can find some of the most hidden stuff. But it is odd. The whole show shouldn’t be on (following that logic) because people on What Not To Wear can find articles on how not to look like they look too…but gee, they haven’t found those articles, either. I got similar information from a friend yesterday… You can look in catalogs and make your own look… I can hide in my little hole in the wall and stay away from where people can see me and find the information that I want.
You don’t SEE “defective” people on shows like this. Okay, the people aren’t “the beautiful people” all the time, and sometimes they are people who have “OVERCOME”… but there are people who would just like to see someone like themselves… someone they can relate to. I would love to be able to have lost 100 pounds and get nominated. I would love… to have lived through open heart surgery and been elected spokesperson for something awesome and be nominated. I will never “overcome” RA. Things like MS, RA, FIbro, to Katherine’s point braces have to create a fashion situation, <pick a forever condition that causes forever challenges> don’t make it into the limelight. Just because someone has limitations doesn’t mean they don’t care or that they don’t want to look decent and fit in. It doesn’t mean that they don’t notice that no one seems to publicly give a crap about anything either…. we have situations, we aren’t stupid.
It kind of makes me take pause HERE particularly because RA is one of the big name advocates for RA…

http://www.lifescript.com/Body/Style/Your-Look/Clinton_Kelly_How_to_Dress_with_Rheumatoid_Arthritis.aspx
http://www.newwayra.com/experts
http://www.disabled-world.com/communication/broadcasts/ra-tips.php

It isn’t so much that “I” want to be on What Not To Wear (but hey, given that I’m spending $2000 a month on the medicine that keeps me mobile, the $5000 on clothes and having someone tell me how to hide the fact that I have lost about half my hair… not enough to be able to justify the really cool chemo hats and scarves but enough that you can SO tell…. would be wicked cool.

When you live every day with an invisible disease, sometimes just seeing someone on TV that isn’t pushing something for the drug companies… someone you can look at and think… HEY, maybe we do matter… would be kind of cool.

 

The point is… I can find the information on line.  I took the class at Pitt that pointed out that you could bury Hoffa 3 help screens deep and NO one would ever find him.  I actually (once upon a time) cleaned up reasonably well.  I had the most amazing black suit that used to fit me well and that I didn’t hate walking around in.  I CAN do it.

But you know what, I’m tired of all of us being invisible.  I guess I haven’t recently been accused of invisibility because I tend to be very in your face about epilepsy and the fact that my daughter CAN do anything she wants to do (except maybe swim without anyone with her who can rescue her… and heat sea food… allergies).

For my friend in the great white north… dressing and fixing yourself up without relying on things laden with fragrances.

For my once upon a time friend in Amarillo, dressing with flare with MS.

For Kim and my mom… just getting dressed with fibro.

For Danielle… who is just starting to learn how to deal… not chewing glass when you are in the middle of the mother of all flares and you want to not humiliate your kid on the class field trip and still not cry the whole time.

Yes, I would love the in your face attention AND the $5000, personally, to buy a whole new wardrobe.  But I don’t, frankly, give a tinker’s dam WHO they get to put on the show, I would just love to see someone who is “PEOPLE LIKE ME” (anyone noticing the thread there… hmmmm) who gets to come out of the shadows and gets their painted on smile pasted on the TV and gives the rest of us the satisfaction of seeing someone who is getting the attention.

Okay… I will put my soapbox away now…

have a great Wednesday.

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