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Archive for July, 2011

Domestic Violence is no joke. Glamour and the National Domestic Violence Hotline are working on a campaign called, “Tell Somebody Campaign”. Click on the video below to learn more about what you can do to help stop domestic violence in your area.

http://www.glamour.com/tell-somebody/video/2011/05/tell-somebody-help-put-an-end-to-relationship-violence

#DVWarrior

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As one that has Lymphedema in the legs since 2004, I just love it when folks can come up with creative solutions to the fashion of having to wear  unslightly compression garments, which always lead to questions of “What did you do to your leg/arm?”  “Is it going to go away?”  “Is it just water retention?” etc, etc.   Although this isn’t going to work for me with my lymphedema in my legs, it is nice to know that someone out there is thinking outside of the box to come up with some fashionista hints.

“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.

via RainbowsWithinReach: Lymphedema Fashion Scarf.

http://www.facebook.com/pages/Lymphedema-in-the-News/127336167284700

 

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“Up and at em’! It’s finally Friday! This is Erika Gonzalez with We Are Austin Morning’s FACEBOOK TOPIC OF THE DAY: A Houston couple has had their kids taken away from them because for the last 3 years, the family has been living in a storage unit. The 12-feet-wide and 25-foot-long structure comes equipped with beds, a refrigerator and even a computer. The couple says they fell on hard times and are doing the best they can. Should the state give the children back to their parents?”

via KEYETV’s Photos – Wall Photos.

My response on this was:

Homelessness among families is a huge issue throughout the communities and not well spoken about in the media. Talk to ARCH to get some figures on homeless families even just in the Austin area. These children had a shelter over their head, at least. Many are living out of cars. The economy’s ups and downs certainly isn’t conducive to people’s survival in making ends meet. When one is paying $500-800 average apartment rental (more for that many children), it is easy to see why they choose to cut down that expense, when they can’t possibly squeeze any more out of the other areas of their budget. Too, homeless shelters are at their capacities. Provide some solutions so that folks don’t have to be forced into homelessness situations. 🙂

Agree or disagree???

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Symptoms of Compassion Fatigue

Some of the tell tale signs of compassion fatigue are listed below.

Lack of enjoyment in day to day activities

Not deriving any joy from things that used to excite the person earlier

Difficulty in concentrating in any task

Feelings of anxiety and perpetual fear

Feelings of irritability triggered by trivial things

Isolation from family and friends

Detachment from work and life

Inability to take big or small decisions

Lack of interest in work

Avoidance of certain situations and people at work

Unprovoked outbursts of anger

Constant feeling of dread and imagination of doom

 

Causes of Compassion Fatigue

Some common causes of compassion fatigue are listed below.

Interacting with and taking care of terminally ill patients day in and day out

Caring for a physically or mentally challenged child

Counseling grief stricken families in times of grave environmental disasters

Counseling victims of sexual abuse

Working in a help line to support and encourage trauma victims

Working in close association with mentally challenged people

Providing support to people suffering from depression

via Compassion Fatigue Causes.

 

As an advocate the key to success is being able to balance compassion so that fatigue is avoided, or if it occurs that it is quickly diverted and conquered.  I am fortunate that I work at a place that takes “wellness” seriously and we are allowed to go into a wellness session for almost 2 hrs each month paid for and flexed time away from the phones, giving one an option and opportunity to balance a 40 hr work week on the phones with folks in various crisis situations  with some downtime to take care of you (the advocate).

Sometimes the wellness sessions would include meditation methods, a bit of art therapy, a bit of learning of various techniques that we can also share with the callers, some yoga, some zumba, pottery making, learning to laugh, and so much more.

More important is to take application of the things learned from the wellness sessions to make a better quality of your own life.    Healthy eats, exercise/movement, quiet time, time to voice and be an activist outside of the work environment, and so much more.

A great book that wasn’t mentioned in the connective article to read about compassion and taking care of yourself is a book called 

Trauma Stewardship: An Everyday Guide to Caring for Self While Caring for Others

 by Laura Van Dernoot Lipsky and Connie Burk, which can be found on Amazon.com.  It’s definitely a worthwhile book to read and may become your “Bible” beside you if you are a caregiver in any aspect.  Their website is something that is valuable for continued support in your own journey for continued caregiving of others — http://traumastewardship.com/.

What ideas do you have to focus upon to combat compassion fatigue in your everyday life and continue on the enjoyment of the journey of Caregiving in the sense that it is really meant to be?  Would love to hear more ideas from you.

 

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Empathy can be literally defined as:

em·pa·thy [ émpəthee ]   Audio player

  1. understanding of another’s feelings:the ability to identify with and understand somebody else’s feelings or difficulties
  2. attribution of feelings to an object:the transfer of somebody’s own feelings and emotions to an object such as a painting

[ Early 20th century. < Greek empatheia “affection, passion” ]

 Ashoka Fellow Molly Barker, Founder of Girls on the Run International®, who has been working to build-up Ashoka’s Empathy Initiative. suggests the following:

Empathy has been a hot topic at the summit. Typically considered a soft skill and not necessarily essential to leadership (at least in the traditional sense), Bill Drayton, Founder of Ashoka, has uncovered a number of thematic connections between all of those folks who are social entrepreneurs. Empathy has been and continues to be at the top of that list.

Empathy is one of those things … “things” because I’m not sure precisely what to call it … that I’ve taken for granted. I was raised in a very empathetic home. My family members are empathetic. My children are empathetic and most everyone – heck, EVERYONE! – I work with is empathetic. I’ve naturally, based on my own experiences, assumed that most people would understand why empathy is essential to being human … a kind of “duh” sort of thing. A clear and VERY obvious outcome of Girls on the Run is the ability of every girl and coach to give and receive within an empathetic context.

In my mind, without empathy we lack the ability to deeply connect with another living creature. Empathy affords us the experience of being one in experience with another, putting aside our own ego, the need to be right, and being with the emotions of another. It doesn’t mean fixing them, making the emotions go away or enabling the individual. To me it simply means being with their emotions without interference from me.

via So how do you get empathy, anyway? (Hint: You won’t find it in a lecture.) | Ashoka.org.

As an advocate, I am always under the impression that being with empathy is demonstrating a concern and understanding of the here and now of the caller/person communicating with (no matter the mode of communication).  It isn’t a time of formulating one’s opinion of the situation; it is more important to sort through options and more options for the situation given at hand, as well as providing emotional support and guidance for catapulting forwarding to the light at the end of the tunnel, in order to move forward to, hopefully, without the burdens of the crisis situations at hand.

People need to have a voice in their lives moving forward, they need to see and weigh out the options available for them (because when in crisis mode, you rarely see through the mist of the tears caused by the emotional and/or physical pain currently enduring); however, they need to know that they aren’t crazy, that they have lives that are valued, and that they can do things and make great decisions that affect their own lives, as well as those around them.

How do YOU see empathy?  How do you apply empathy in your daily lives?

 

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