Feeds:
Posts
Comments

Archive for the ‘A Way With Words’ Category

Being a survivor from domestic violence can mean many things to many different people. Here is my story, and my journey after that in order to have a voice in helping others through a variety of advocacies that I do.

National Domestic Violence Survivor Law Project

The story of my past experiences with domestic violence and how I have moved forward throughout the years to provide advocacy to others.

View original post

Read Full Post »

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

Read Full Post »

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

 

Read Full Post »

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.

 

Read Full Post »

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?

 

Read Full Post »

Kathryn’s Story

Please join me in the fundraising effort for this organization, the Lymphatic Research Foundation who strives to find a cure for Lymphedema.

In 2004, when a suburban hit me in an intersection and spun me around, my knees hit the steering wheel hard.  At the time, I didn’t have medical insurance; just the PIP insurance with your normal coverage of auto insurance policy.  When it was discovered a month after the accident that my swelling in my legs was simply not going to go away, it was only a beginning to a journey of learning how to be an advocate for myself.  The hospital granted me a grant for 10 treatments, but anyone who knows anything about lymphedema, 10 treatments is clearly not enough.  I was left on my own to wrap my legs and utilize a small pump and try to get the swelling to go down on my own without any insurance coverage.

By the time that I gained health insurance in 2008 through my employer when transitioning from a full time relief employee to a full time permanent employee, my legs were getting out of control and I was beginning to develop some pressure wounds.  After 3-6 months of physical therapy, aqua therapy, and transitioning from the ace looking compression bandages get up to the juxt-a-fit garments, and the approval of a flexitouch pump, I finally was able to have a better guide, control and understanding of what to do for maintaining my condition.

To this day, I still walk about with garments on both legs, although the right leg is far worse than the left, and tennis shoes that are way to big for me ordinarily (because of the wraps, I have to wear much larger shoes).  I have some sights on a new garment that comes in black and cheaper than the ones that I presently have, however, are supposed to work even better.  Hopefully, I won’t have the $500 annual garment purchase, plus the additional $100-200 I purchase each month in various specialized stockings that I have to wear with the garments.  Keeping my fingers crossed.  At least, if they are in black, they might be less noticeable.  For the past 7 years, everyone seemed to look at me with strangely while I continued to wear these garments day in and day out for the past 7 years, going on 8.

During the past years, I have been a strong advocate, learning more and more how to speak up for myself and try to make sure that I have the latest in the developments to ensure that there is continued progress without any set backs.  I’ve also promoted latest and greatest news on my Lymphedema in the News page on facebook and have become one of the admins in a patient’s only page (private) on facebook where we work to encourage and inspire one another.

In additon, I have had other lymphedema advocates come on my blogtalkradio show called, Beyond Words Live, to share updates about HR 4662 bill that is the national legislation concerning helping to defer the high costs of treatments towards the lymphedema patient.  It is critical that there is attention to this bill because, if lymphedema is left untreated, it poses a much higher health risk — such as the awfully painful pressure wounds that can run deep past the fatty tissues underneath the skin layer, exposing it to the opportunity for more infections, etc.

My story is one of many stories.  This is not lympoma or any form of cancer, although it can often result from having radiation treatments necessary to combat cancer.  Many other folks have many other causes — some trauma situated causes like mine — many others have other situations that have occurred to where the lymph nodes were damaged in some other way; and, in some cases, too, there are some hereditary links to this long lasting condition.

I come to you today to ask that, even if you can only contribute $5, it is $5 more towards the research that can be done to find a cure.  Thank you for reading my story and considering helping the cause.  I look forward to being able to tell the foundation that I exceeded my goal in raising funds for the much needed research.

Thank you!!

Kathryn

via Personal Fundraising Page for Kathryn Benefiting the Lymphatic Research of the Lymphatic Research Foundation!.

Read Full Post »

The National Child Traumatic Stress Network provides a great fact sheet resource to Domestic Violence  and Children:  Questions and Answers for Domestic Violence Project Advocates, answering such questions as:

How do children react to domestic violence?

What are some typical short-term responses?

What about children’s responses in the long term?

What are the factors that help children recover?

What should parents tell their children about domestic violence?

How much information is enough but not too much?

What should a parent tell a child about the parent who was abusive?

How can advocates protect children from adult information?

How should parents respond to and cope with their children’s feelings about them?

What are some strategies for managing children’s behaviors that may occur in families with domestic violence?

How can advocates determine when a child needs more help?

and,

What is secondary trauma and how does it affect me?

 

 

Click on the link below to learn more:

http://www.nctsnet.org/sites/default/files/assets/pdfs/DomViolenceFactSheet_final.pdf

 

 

Read Full Post »

Older Posts »