Thursday, July 7, 2011

Lymphedema Fashion Scarf

"Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant." --Horace, Roman poet

I've made a commitment to the challenge, 31 Days to Build a Better Blog. It's a brilliant program. Recommend it highly!! I'm learning a lot in the process, though I personally am on the 31 'week' roll-out. [Talking now to myself: it's all about the baby steps, right? Take enough baby steps in the right direction and there is eventually some measurable progress. BTW: this summer I'm also on the 'what-in-the-world-is-Twitter-and-how-can-I-integrate-it's resources' plan, which may prove to be a 31 year cycle. LOL The only place that I seem to be making real traction is over on LinkedIN, where I do seem to be able to navigate, connect and learn. Maybe it's because people speak in full sentences there?] Not at all sure how this post fits into the 31DBBB, but here we go.

Since I actually do have some new 'readers' and I can tell this because I have figured out how to look at my blog analytics, whooop whooop, I probably need to preface this post with an announcement. "My name is Debbie and I am a two-time survivor of early Breast Cancer." I am also in the daily trenches of surviving BC's chronic 'dirty-little-secret' of Lymphedema. LE is indeed a potentially life ending diagnosis, but beyond that little attention getter, it poses a daily & never ending array of life-challenging agonies, concerns and frustrations. Don't be surprised if you've never heard of LE. Based on my experience & that of a goodly number of my 'swell' LE friends, neither has much of the medical community. Grrrrrrrrrrr.

Like my early BC diagnosis, I am also in the short-end of the LE pool and I'm making it my daily work to stay here. Due to my various surgical procedures plus radiation and its aftermath plus a variety of other complications and set-backs, I have lymph nodes that no longer function properly. Ya never know how significant your lymph nodes are -- until they get rearranged and quit smiling. My right arm (and yes I am right handed) no longer feels like it's mine. It doesn't feel like it belongs to me. It's heavy. It tires. It's dingy, pingy, Grumpy, sleepy and several of the other seven dwarfs as well, tho not Sneezy. I have a whole host of protective, proactive behaviors and exercises. You don't even want to know about the threat from mosquito bites, I kid you not! Genuine threat the skeeters. Grrrrrrrrrrr.

The long and the short of it? I need to protect my effected arm by wearing a compression sleeve. I also wear other compression garments for various reasons and purposes, but that's a whole different story and post. Today is about summer. Heat. Ugly sleeve. Intrusive questions from total strangers. [Like the waiter who looked at my compression sleeve and said with an air of knowing superiority, "Drug addiction issues, eh?" Nothing like an insightful waiter. How could I make that up?] This post is about my occasional desiring not to be a billboard for BC/LE. Going under-cover. Yes and fashion! Being the fashion maven that you've come to recognize here, you know how fashion plays a large part of my mindset. Here's what I wrote last month over at BCO.

When we were in Europe, earlier this spring, EVERYONE was wearing scarves. Scarves were available EVERYwhere, in every possible design.

I bought a 6 foot scarf that is made of one continuous piece of 'pre-pleated' fabric which measures about 20 inches in it's natural/scrunchie state. It measures about 40 inches when the fabric is pulled to it's max width or flattened.

Anyhow. Quite by accident, while in Europe I wrapped the scarf around my compression sleeved arm while wearing a tank top. A little tuck here and there and I could have one 'naked' arm and one bare shoulder. VOILA!!!!!

For the first time in the summer I felt like I didn't need to be 'on guard' from total strangers asking what I'd done to my arm. Oh happy day!!

Today, a delightfully warm summer day in the low 80's, we went to see "Jersey Boys" and I decided to use my European scarf idea again & wanted it not to flop/slip around so much --with me tugging. So I made the scarf into a 'tube' by sewing it closed at one edge to slide my compression sleeve'd arm into and then just draped the rest of the length of the scarf around my neck. The sewing it shut/tube is a more permanent solution for using the scarf as a dressy hiding spot. I hope that this makes sense.

I have been experimenting with scarves for the last month.

Having enough length in the scarf seems to be the real solution -- especially for the body-draping concept. I hope that the illustration gives the impression of just a scarf draped oh so casually across the shoulder (to the on-looker.)

The tube affair is the real camouflage.

As you may be realizing, I am now at the point of wearing just a sleeve for 'everyday' sitting at the theater events. I still wear my gauntlet when doing anything physical, flying etc etc.

I think with enough material in the scarf you could put a little stitch in the very end to create a mitten effect and still hide an entire gauntlet with ease.

The response from my LE cyber-friends round the globe has been awesome. They like it! They like it! I share here, just in case someone googles up LE and fashion (yeah, right!) My original post from BCO has been moved to the site specific for LE created by a trio of the kindest, most brilliant women on the planet called Step Up, Speak Out. It is an end-all, be-all site for support info and all things LE.

I hope that my sharing the same idea here, in this format gives some of my dear friends and supporters just a little further insight it what it means to be a survivor on a daily basis. If the post accomplishes that in the mind of one reader I have met my goal for the day.

***Oh and one more thing!!! When in doubt, out in the real world, if you meet someone with a "difference" in their appearance, count to 10 before you launch into a series of questions or insightful comments a la my waiter. If there's any wondering at all on your part, you can always fall back on the tested and true voice of your Nana, "If you can't say something nice, don't say anything at all." The classics are indeed classic for a reason.

Next post? An interview with a real authority on the world of dance and movement!!

Now. Back to painting my new skirt and vest combo. I am gearing up for Vegas next week and one of my favorite national conferences, "I Teach Kindergarten" where I have two workshops and a book-signing with Crystal Springs Books!!!! Wait till you see my newest ensemble!!! Fashion indeed!

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  1. Your ingenuity knows no bounds :) marlegal

  2. Mary. I hoped that you might get a chance to read & see my idea. What da think? Pretty good, eh? Pattent pending!!!

  3. What a clever idea! - it looks great. I knew about lymphodema and have always thought it must be very hard to deal with. Full marks to you for using it as a springboard to get creative.

  4. Gilly. It is one of the biggest challenges of my life, this LE, it's ramifications and the 'chronic' nature of all the issues. The relentless day in & day out frustration wears me down at times. So it's a joyous serendipity to have stumbled upon a simple solution that allows me to feel some normalacy in the summer..... when so many of the challenges are felt due to the heat & humidity at hand. Thanks for your kind comment.

  5. oh What a great idea you have given. It is really very useful. If we have to go for a party so you can use this scarfs to look good. so now there is no need to avoid any parties. Thanks a lot!!!Read More


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