World Lymphoedema day

It is that time of year again when we build awareness of Lymphoedema …. March 6th is world Lymphoedema day .. Lets celebrate as a community and support each other while we share with others … This is the time to educate others on this disease that is so misunderstood.. Let March be an important time where we share our stories, let us show the world what it means to have lymphoedema …

 

Product Review: Getting Relaxed with the Jobst Relax

This may be a new type of compression garment for you to try ..thanks for sharing this review based on your experience… it is certainly less bulky than other options

The Lymphie Life

Disclosure: I received one free Jobst Relax to review on The Lymphie Life. Although this post is sponsored, all opinions expressed here are my own honest impressions of the product!

When I first saw the Relax last autumn before it’s official launch, I thought it was totally different than anything I had seen before. After wearing it for a good couple months now, the initial impression of novelty has evolved into genuine appreciation, as the Relax has become the garment I never knew I needed.

This latest compression tech from Jobst is not quite a nighttime garment, and it’s not quite a daytime one, either: it’s more of a lifestyle garment. That’s what I love most about it, because it fits whatever need you may have for it.

The Product

Just one look at the Relax and you can tell it’s different from most custom garments out there because of its unique material.

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SAPL Surgery – the second step!

Update on SAPL surgery …thanks for sharing…

Lymphosaurus Rex

Hey all,

Gosh its been a while since I did an update on the blog; but not much has happened up until recently. (If you want more regular news from me, its best to follow me on Instagram @lymphosaurs_rex)

I recently went to Paris for “stage two” of my Lymphedema surgery plan and had a liposuction procedure (SAPL) with Dr Becker. The goal was to remove the fibrous tissue (mainly on the exterior side of my left left) that has accumulated over the years of living with LE. To the naked eye, it looks like nothing but a fat leg, but when you touched my leg it was kind of harder in some spots than others.

The procedure took about one hour and I was a day patient at the hospital (no overnight stay required). I never really had a huge amount of pain (stopped taking the pain killers around day…

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8 months post-op

Thanks for sharing your progress with us

Lymphosaurus Rex

Hi everyone,

It’s been 2 months since my last blog and lots has happened in between now and then. These last two months have really been an emotional rollercoaster for a variety of reasons. I’ve been very immersed in my own little Lymphedema world, researching, learning more and more (and also being disappointed with the lack of up-to-date information on the internet). I’ve been connecting more and more with others who suffer from this condition, listening to their experiences and stories (2 hour long phone calls to the USA, United Kingdom, Solvenia!), which has been incredible! It always feels like I’m listening to an echo of my own story when I speak with other Lymphies; the similarities are fascinating.

I’ve really had the urge to do something more with my blog, my story, my mission to raise awareness of Lymphedema, which in turn has been pretty draining on me mentally. I feel like there…

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6 months post-surgery — The Lymphosaurus Rex

Hey all, We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg. Firstly, its still too early to see […]

via 6 months post-surgery — The Lymphosaurus Rex

Workshop at the Conference: Surgical management for lymphoedema

Sharing this to show the wonderful results of lymphatic lyposuction on a ladies leg… She now has her life back which is a huge bonus and makes it worth while to still have to wear her compression .. Thanks Lisa for sharing this positive outcome …

Lisa Higgins - massage across the table

This was one of the many powerful presentations at the Conference, presented by Louise Koelmeyer of Macquarie University. What made it so powerful was that it was a case study of a patient who had undergone surgery and she and her husband were both there to discuss it with us first hand.  So many of the talks at the Conference are reports and statistics, so to be able to interact with an actual “case study” was invaluable.

The patient was 48, had six children and was then diagnosed with a gynaecological cancer, requiring surgery/chemo/radiation.  After her treatment she developed lymphoedema in her left leg.  She lived “out bush” so getting treatment was difficult but she did manage it fairly regularly but couldn’t attend often enough to control the swelling. She had to give up her work as a teacher as she couldn’t move easily but more importantly her leg…

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Lipoedema at the 11th Australasian Lymphology Association Conference

Some of you may recognise the symptoms of Lipodema and not just Lymphedema… This is some useful information…thanks Lisa for this

Lisa Higgins - massage across the table

I’ve just returned from the 11th Australasian Lymphology Association Conference, held in Darwin from 26-28 May, 2016.  These conferences are filled with information on the latest research which is always interesting and a bit mind-boggling at times.  I was very excited that this year there was a real focus on Lipoedema, a condition I am passionate about.  I’ll try and set out as much useable information as I can from two speakers in particular – Dr Ramin Shayan from the University of Melbourne, Australia and Associate Professor Karen Herbst from the University of Arizona, USA.  In this post I’ll focus on Dr Herbst.

Firstly, according to Dr Herbst, a few of the symptoms of lipoedema (for more information click here):

• fatty enlargement of limbs (firstly legs, arms can develop later)
• pain
• predominantly women affected, if men then they have low testosterone or liver disease
• bilateral and symmetric
• sluggish…

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Radiation Induced Lumbar Plexopathy

Thanks fir sharing this infomation in the hope that others find answers for their unusual health problems post treatment

rectalcancermyass

A few weeks ago someone left me a comment on Twitter after I tweeted about my balance problems. She mentioned Radiation Induced Lumbar Plexopathy, something I never heard of it, so I did some research. From what I read, I could very well have this.

My balance problems became evident after I was weaned off pain meds. Before that my doctors thought I was wobbly because of the heavy-duty pain meds I was taking. But when I was drug-free, they checked me over and all they could tell me was “I don’t know.”

I looked around the Internet to see if I could find out for myself and the only thing I came up with was… maybe the chemotherapy attacked my nervous system. I only had two doses but the first one they gave me was accidently over-dosed, so I figured that’s when the damage was done. Since I found nothing concrete and my doctors didn’t seem interested…

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Thank You

March is drawing to a close and I would like to take the opportunity to thank everyone for making this the best Lymphedema Awareness month ever. For the first time we had World Lymphedema day, on March 6th, as everyone united to bring awareness to a disease that affects millions but is not well supported or understood.

Both those with Primary and Secondary lymphedema stepped out of their comfort zones to tell their stories. What a variety of personal accounts have been shared across social media. The effect lymphedema has on people’s lives is different for each person. The severity is also different for everyone ranging from one limb to the whole body. Some people get many bouts of cellulitus and infections, others non. In some the swelling is very severe, in others manageable. The one thing that unites all Lymphedema sufferers is the need to care for their limbs 24/7 and the need for better financial, physical and mental support. The burden of care financially should not just fall to the patient, in which case many cannot afford the care that is needed.

By bringing awareness we hope to educate people on the needs of those with Lymphedema. We hope to move governments to introduce legislation to cover more of the costs faced by those with lymphedema. We hope to encourage reasearch into this often misunderstood problem.

Thank you to every single person who  has been involved in building awareness of Lymphedema. The story writers, the bloggers, the Facebook pages and groups, those that shared on social media those that liked and read and talked about Lymphedema. Those who ran workshops and groups. To Kathy Bates for stepping out to be our spokes person. Everyone no matter how big or small has led to March 2016 being the best awareness month ever…

Well done all …

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Everything You Wanted To Know About Lymphedema But Were Afraid To Ask: An Interview With Cynthia Shechter, Breast Cancer and Lymphedema Rehabilitation Specialist

Another informative post from Carrie on her experiences with Lymphedema … Thanks for sharing

My Little Bs Have the Big C

Wow!!!!  I am humbled by the overwhelming response I received in response to yesterday’s post, Lymphedema and How It Has Changed My Life.  So many of you have shared your experience with lymphedema, whether you got it as a result of breast cancer treatment, another surgery or trauma or as a hereditary condition.  This has made me believe, even more strongly than before that we need more research, education and awareness for this disease.  What an incredible community we are creating when we share our experience.

Today, March 6, is officially World Lymphedema Day, which makes me even more thrilled to introduce to you, Cynthia Shechter of Schechter Care.  Cynthia is an OT specializing in breast cancer and lymphedema rehabilitation.  She is not only the OT that has helped me manage what I thought was a condition that would only get worse with time and could not be helped…

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