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Archive for the ‘Lymphedema’ Category

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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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!.

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Being a lymphedema patient myself, and having a wonderfully doting and caring boyfriend who acts as my daily caregiver, I can appreciate reading this lymphedema patient’s daughter’s point of view as a caretaker.

I love the title of the blog as well — DREAM FOR A CURE… 🙂  This is definitely a common theme among all lymphedema patients and caregivers because this lymphedema condition isn’t necessarily a temporary condition but one that is a lifetime commitment to keep it from becoming a dangerous and lethal situation if left untended.

Be sure to take a glimpse at this blog and learn more about this condition that so desperately needs a cure. 🙂

Dream For A Cure….

 

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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.

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

Read Full Post »