Thursday, August 19, 2010

Chronically Ill and Falling Fom Style: 9-1-1 to the Fashion Police!

As a member of Bloggy Moms, this month's Blog challenge has to do with falling from fashion - where do you stand on fashion trends? Boy, I'll bet they don't see this post comin'!

When you're chronically ill, there are some things that simply cease to be important. When you're just trying to survive, you try to stop noticing what people think of you when they look at you, you hope they see the beauty inside of you instead. At the same time, those outwardly visible things can simultaneously make or break your day - like how you dress.

How can this be?!

When I talk about dressing, I'm not talking about dressing up, but simply getting dressed - mindfully. It's the little things that matter now. What I once used to take for granted I now depend on to help me feel better.

On the very worst days, when I wake up feeling awful, I try so very hard to get out of bed and get dressed all the way down to my shoes. Why? Because it makes me feel better. No, not the doing - that is downright painful, sometimes torturous with all that bending and stooping, grunting and groaning and pulling and tying. I feel better when I'm finished with all of that and stand and look at myself in the mirror and realize how much better I look. When I look ready to meet the world on its terms, I feel ready!

What's more, I try to wear something - at least one thing - that makes me feel like I did something special for myself. It might be a ring that everyone can see. It might be silky underthings that only I know are there. Sometimes it's mascara - a rare indulgence since autoimmunity took over my life. Or eyeshadow which just kind of make me look like I care a little. Sometimes it's a shiny silver bracelet engraved with words of encouragement.

On style? I haven't forgotten style, but I have become a slave to things that simply 'work' for me:

  • My big brown aviator sunglasses are far from glamorous, but they work for my Migraine and sun sensitivity, and they were the only ones that did. So - I wear them.
  • My stretchy sweat pants - I wear those because some days my abdomen can't take wearing anything that binds me in the middle without causing a lot of pain.
  • Oversized soft t-shirts that don't irritate the rash on my torso.
  • Heavy boot socks to keep the circulation going in my blue feet.
  • My Shape-ups shoes that allow me to walk with less pain.
  • Even in summer I sometimes wear black gloves as I try to keep the circulation going in my hands and fingers.
  • In winter I'm often seen wearing all these in layers in whatever colors are clean for the day.
  • Long pants or skirts cover scarred legs - when I dare.
Honest - I do try to mix and match when I can, but sometimes clean and serviceable just has to take a priority over pretty.

Yes, I'm sometimes embarrassed to go out in public looking like jailbait for the Fashion Police, so those days I pretend I'm in disguise, lol. You see, I used to be very fashion conscious - I was even a model for a few years, getting paid to prance around wearing fabulous clothes. Boy are those days gone!

I try to put on makeup and make my hair look presentable. I do try to wear things that make me feel good, even in the presence of those things that remind me of the items I can't wear anymore.

The fact is, I try, and I'm not alone...

So, before you send around the Fashion Police, please stop to remember why someone who is chronically ill may be wearing something that is well.... unfashionable. You might take a moment to stop and notice the yellow diamond ring, or the sparkly earrings, or the lovely shade of lipstick and bypass the other stuff that I assure you, we dislike as much as everyone else. Someday perhaps a designer will come up with a way to make clothing that is serviceable for us and our particular needs AND looks beautiful. Until then, I guess I'll keep going to the store incognito!
Comment by Spurtler on August 19, 2010 at 5:10pm
Here's a serious suggestion. Why don't we start a new fashion line of clothes and jewelry adapted for looks, disability accommodation and comfort. If it is based on the WEGO logo design it could become the "in" thing to wear like Lance Armstrong's rubber bracelet. Let's squeeze those lemons and see what's in there.

Please, please keep posting how you feel. I think it's important for you (you can look back and see that there were both good and bad days, emotionally) and for the community. I personally am looking to learn more about coping strategies that disease victims have developed so that they tools and tips can be managed and distrubuted to those in need. Your article is great!
Comment by Ellen S on August 19, 2010 at 5:14pm
Wow Spurtler - what an interesting idea! You know, there are great places like Cafe Press that will custom imprint and sell items for you. I suppose if all else fails, a nice soft WEGO Health T-shirt with a catchy phrase would be just as serviceable as a plain one, and much more fun.

What do you think? Have you got any great ideas burning in your mind????
Comment by Spurtler on August 19, 2010 at 8:39pm
OK, Pandora. You asked!
I would start with something simple to see if the idea catches on (Test marketing).
I'd ask the member network if they know of any fashion designer that meets the three requirements, looks, disability accommodation and comfort (this could be tough to find or design but let's try!).
I would ask the membership to come up with designs to promote inclusion and pride of ownership
I would seek sponsorship to jointly promote WEGO and the sponsor (e.g. a bracelet or pendant with engraved medical condition (could be just a plastic card) or "I'm a WEGO Activist. This is the only warning you're gonna get!")(Google and Microsoft have PHRs that could be promoted)
I'd try to get some celebrities to wear and promote the items (Snoop Dog)
I'd dedicate the profits to a worthy cause.

All of this stuff has been done before. I did it for a small semi-pro American football franchise. The key is to use the talent and network of your members and promote, promote, promote.

And make it fun.

Going back to my first comment, please don't stop sharing your feelings. I identified with everything you wrote in the blog because I've heard my wife comment on each of them.
Comment by Spurtler on August 19, 2010 at 11:00pm
Postscript thoughts:
Have the contestants of Project Runway design the fashion items and accessories.
My wife feels better after eating chocolate so designer chocolate/candies might be a different approach.
(Apologies to the nutritionists amongst us)
Comment by Ellen S on August 20, 2010 at 11:35am
Fab ideas! Since you have done something like this before, would you like to try to head something like this up? Of course we'd need to ask WEGO Health if they would support this effort, but if that doesn't work out there's nothing to stop this group from finding another way to produce fashion that is functional for our disabilities - is there??!
Comment by Spurtler on August 20, 2010 at 2:01pm
Thanks for having the confidence in my ability to carry this responsibility. I've been a member of WEGO for 3/4 days. I haven't had time to visit all the corners of the site. I'm interested in this project because it's both mentally and physically challenging with a great potential reward. Because it involves reaching out to the general public I think it is a project that must be blessed and supported by WEGO management. So I'm not saying "Yes" and I'm not saying "No". What I can do , however, is pull together a presentation of the ideas so that we both can pitch it to the powers that be. I suspect that they will already be on top of this so the best results may be an amalgamation (can we have a spell check on these blogs, please?) of the ideas. What do you think?

Here's a postscript to my postscript, and I think the best idea I've had so far. The most difficult part of the proposal is the design of something that may not already exist. Our goal is fashion high, comfortable clothing and accessories that are a accommodation to the disability. (I hate the word disability). This design needs skills and experience in the fields of fashion, clothing manufacturing, bioengineering, medicine and physical therapy just for starters. Just because I'm an engineer, have a doctor and watch Project Runway does not qualify me. But there are colleges, throughout the world that do have the required experise. Maybe my idea of contacting Heidi Klum and having an international challenge supported by "Save the Children", might have some merit. This could be huge. Let's get the blessing we need from WEGO. I think the benefit of this idea can be enjoyed internationally rather than merely in the US.
Comment by asburyparkangel on August 26, 2010 at 11:15am
Ellen, thanks for this blog. Hilarious and yes, even serious. You're a beautiful free spirit and brave gal! You deserve my VOTE for the best gal around. Thank You for the time you invest in us.!.
Comment by Ellen S on August 26, 2010 at 5:48pm
ashburyparkangel - Thank you Dearie!! You made my day. I assure you that the feeling is absolutely mutual! :)

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