Shamed by Facebook: How One Woman’s “Undesirable” Photo Turned Outrage into Empowerment

I am reblogging this so that people understand what it means to have primary lymphedema … Helping to build awareness… Thanks Alexa for this article after FB asked Karen to remove her picture …

The Lymphie Life

Social media holds the potential to connect and empower people, but it can just as easily tear down and dehumanize them. For one Canadian woman on Facebook earlier this week, it did both.

The photo Facebook deemed "undesirable." (Photo courtesy of CTV News.) The photo Facebook deemed “undesirable.” (Photo courtesy of CTV News.)

Karen Bingham has lived with primary lymphedema for most of her life. Despite her father and six of her siblings also having lymphedema, however, she has often felt isolated and misunderstood by the rest of the world.

Frustrated with the lack of awareness surrounding her condition, Bingham decided to host a symposium to help educate her community on lymphedema as well as create an opportunity for people to connect with one another and learn about their local treatment options.

To help promote the event, Bingham posted a photo—a close-up of her swollen bare legs—on Facebook. Not long after posting it, however, she was notified that her photo had been reported for containing…

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Put this date in your Diary and sign the petition

I am reblogging this to ensure that everyone has signed the petition at the end.. There are millions who have Lymphedema but only just over 3000 have signed this petion… If you want to make a differnce please sign and share with your friends and on social media… It is very important that we show the goverments of the world that we need research, money for treatment and support. Now is your chance to be heard by signing this petition… SIGN… SHARE

My Lymph Node Transplant

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Put this date in your diary… March 6th 2016 will be World Lymphedema Day… The whole of March is Lymphedema awareness month, there is a push to have Lymphedema recognised by the various government health funds. In March there is the opportunity to give Lymphedema a voice. We need to speak out and tell our stories so that people understand what it is like to live with Lymphedema 24/7, if we do not speak out people will not understand how difficult it is to live with every day of your life. Lymphedema can be both secondary and primary, every person is different in how it affects them. Primary is caused by a fault in the lymphatic system that you are born with, sometimes it manifests at birth and in others it may start during puberty or even later in life. Secondary is caused by the removal of Lymph nodes during…

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Follow up with Liz.. 8 months post LNT

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It is a while since we heard from Liz as to how she is going after her Lymph Node Transfer with Dr Chang, but she is now back and ready to share her journey and answer questions that anyone may have. The thing that helps so much is to learn from others experiences, be they good or bad. More people are now having surgery for lymphedema and more doctors are performing LNT, LVA (joining lymphatic vessels to veins) and SAPL (lymphatic liposuction). Nothing in this blog replaces advice from your doctor, but it often helps to connect with someone who has had the surgery and ask questions that you feel unable to ask others. I always say that it is very important when looking for a doctor that they have good pre and post operative protocols, as this is not just about the day of surgery. Being prepared for surgery and having your limb as good as it can be may help. Post surgery the care is important too. What do’s and don’ts does your doctor have… Unfortunately they are all different in this area, so it can get confusing, but always follow the protocol your surgeon has requested for you.

Here is the latest update from Liz

“I had a LNT in June 2015 with Dr Chang. My LE started in 2012, 6 years after having a stage 1 cancer of the uterus in 2006. I would love to help anyone who needs questions answered. It is a VERY long journey and not a second of the day goes by that my left leg is not on my mind. I continue wearing the Elvarex one legged panty with the 30-40 mm of hg compression. I sleep with the quilted compression garment with the sleeve that goes over the top of the quilted garment. My surgery was almost 8 months ago and I have not gone back for a follow-up visit yet. It doesn’t seem necessary for me to fly from Connecticut to Chicago in order to have Dr. Chang measure my left leg…. I will go back to Dr. Chang maybe next month… I think there is a reduction in my left thigh, my ankle and calf have not really reduced much… Dr Chang said that LNT was good, he  also did a lymphovenous bypass in my left calf, he was able to find 1 big vessel to anastomose to a smaller vessel to promote drainage from the calf and foot. That is what seems to be taking a lot more time to show results. I remember asking Dr. Chang about the chance of stem cells being used in the treatment of LE but he said there was not enough research that had been done for stem cells to be placed in the groin. OH well I guess we just have to wait and I have to become more patient …let’s all keep the faith.

I will be submitting my whole story soon, it takes a lot of emotional strength to retell this long and painful journey. I am so very grateful for this incredible blog, in my darkest hour, this blog site and all of the wonderful inspiring people helped me thru the LE despair….We are not defined by our lymphedema; that is something we do to ourselves, we are defined by who we are as people. However, the LE is always present and every step I take reminds me of the restrictive, constrictive, thick flat knit garment against my left leg. I long to feel the fabric of my clothes against my skin. I suppose time will tell and I have to learn more patience.” Liz

Thank you Liz for sharing, it can take a long time to see results, it is not a magic cure but hopefully it will eventually help..

These are some links to Liz’s previous updates…

https://lymphnodetransplant.wordpress.com/2015/06/09/elizabeth-shares-her-lead-up-to-surgery-on-19th-june/

https://lymphnodetransplant.wordpress.com/2015/07/01/surgery-with-dr-chang-liz-

https://lymphnodetransplant.wordpress.com/2015/07/07/liz-two-weeks-post-surgery-dr-chang/

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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://lifeinawheelchairblog.wordpress.com
Thanks

 

 

 

Help needed????

imageA lady in Australia is looking into going to Paris to have LNT with Dr Becker. She has asked me if I could give a shout out to anyone else who may have done this, or from the US or other countries. How long did they stay there before flying home? Where did they stay? What was the protocol like post surgery? It is a good 24 hours of flying to get back to Australia after and what could the impact of this be on the newly placed nodes? If anyone could help, please leave a comment and share your experience… Or I can email you back from a comment notification…. Thanks in advance..

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Latest news from Cindy.. Can I let Compression go?

imageHi all,
Hard to believe that 2/11/16 is the 14th month anniversary of my VLNT with Dr Jay Granzow. I continue to do well and am able to go a few hours without my garment with no visible swelling. I say a few hours, because I am afraid to try it too often. The surgery has given me a normal size limb. I no longer have discomfort and have regained full flexibility in my leg. I no longer wear a nighttime garment. I have taken plane rides ( with my garment on), spent all day on my feet (with my garment on), and I only receive MLD treatments once a month. I no longer use a pump or do any wrapping. Clearly, I am in a better place.

What I didn’t anticipate was how hard it would be to let go of my garment. There is a certain about of comfort it brings me when I wear my stocking. When I don’t wear it, I spend most of the evening worrying about my leg swelling. The surgery has made the physical aspects of living with LE more manageable. The psychological aspect of living with LE still lingers. Not sure how I will get pass this. I still feel like LE is the focal point of my life. The point of the surgery was to free me of having LE run my life.

Prior to my surgery, I spent years trying different remedies. I worked with a nutritionist, took herbal medicines to help move the lymph, took rutin, red clover, medicinal oils, kinesio taping, cold laser treatment, red light treatment, reiki, mindfulness classes, yoga, acupuncture on my good leg, vascular ablation for a vein not working on my LE leg and colonics. These are the things I can remember doing, there may be more. Desperation has you grasping at everything. Think I have owned every brand and weight of compression stocking available. The money I have spent is something I try not to think about. I tried to find a doctor that could help me manage my condition….there was no one. I found little to no interest in the medical community. I was on my own!

Today, I have Dr Granzow and his incredible team. I have an awesome local PT who coordinates with my California PT. I drink lots of water during the day and really think that helps. I start the morning off with warm water, squeezed with lemon. When sitting, I always do my ankle pumps. I do belly breaths all the time. Whenever possible, my legs are elevated. LE is the first thing I think about when I wake and the last thing I think about before I go to sleep. I’ve decided that going without compression for a whole evening produces too much anxiety for me. My new plan is to take the garment off 1-2 hours everyday (or almost everyday). LE is a constant journey, it doesn’t have an end. I’m sure my friends are sick of hearing me talk about it.

Most people think surgery means I’m cured, I’m not cured. I’m more comfortable in my garment and my leg looks normal. Clothing and shoes fit better. I’m trying to learn to be comfortable out of my garment and not panic if I do see some swelling. Easier said than done. So, my next major battle is trying to let go of my anxiety as I try to let go of my compression garment. Once I am able to do that, I will have to be prepared for any possible swelling and not freak out! If swelling occurs, I’m sure it will subside, the surgery has improved the health of my leg. I still need to work on the health of my mind. My journey continues, thankfully I can share it with all of you. By Cindy..

These are links to Cindy’s previous posts

https://lymphnodetransplant.wordpress.com/2015/11/29/cindys-update-on-the-funding-issues-for-those-with-lymphoedema/

https://lymphnodetransplant.wordpress.com/2015/12/21/one-year-after-lnt-cindy/

https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

https://lymphnodetransplant.wordpress.com/2015/01/05/california-lymph-node-transfer/

Thanks Cindy always great to hear your updates. The psychological aspect of Lymphedema is often not spoken about but it is very real.. Cindy is happy to answer any questions and connect with others who may be having surgery… Helen

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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

Update for Sometimes Lymphedema just feels Awful

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The previous post “Sometimes Lymphedema Just Feels Awful” was originally posted in September 2013. Jennifer has now sent an update and it is great to see that life can improve due to the new surgical procedures.

Jennifer says…

“I’ve since had 2 lymph node transfers, one to the groin area, then 2 years later area a 2nd one to the inside thigh area. My progress since that last writing has been measurable. I am so much better off than I was before. I don’t feel pain and pressure any more, I’ve lost a few centimeters in circumstance as measured against the ‘good’ leg, and I have no limitations in terms of physical activity.
I ride my bike in the heat and humidity of summer and have no worsening of my edema. I can get through a long day, at the office, running errands, working out, etc., and still be okay at the end of the day. I can take trips, even longer flights with minimal issues of extra swelling. In fact, we got stranded in Chicago on a return from a getaway to Arizona, and sat in the plane for 4 hours, cramped in our what seems like ever shrinking seats and leg room, and had no problems. I am not ‘cured’ by any stretch of the imagination. I still have to wear compression stockings, still the same strength 30/40 and wear a night wrap. I’ve not been able to go without them even for a day so far. It’s been over 4 years since the 1st surgery and 2 years since the 2nd surgery.
I am talking to Dr. David Chang at the University of Chicago about a LVA Lymph-Venous Anastomosis to see about relieving the fluid in the calf and knee area, that are still problematic . He said I was a good candidate.
The procedure would take 4 hours, where a total of 4 incisions would be made to make those connections along the leg. They are very small incisions, less than an 1 inch, and connect a lymph vessel branch to a vein. Though I’ve read that patients have been able to get rid of their compression stockings after this procedure, Dr. Chang stayed neutral on the subject. It really does depend on the individual’s situation. Dr. Chang is only 1 of a handful of surgeons in the U.S. that do this type of procedure. He learned the technique from Dr. Isao Koshima in Japan.
So, I am very near a decision to go ahead with this procedure. I will keep you all posted!”

Thanks Jennifer for your latest update and I look forward to on going news.. Helen

Other posts from Jennifer

https://lymphnodetransplant.wordpress.com/2013/06/04/exciting-news-from-new-york-nodes-are-growing/

https://lymphnodetransplant.wordpress.com/2014/03/20/news-from-jennifer-march-2014/

https://lymphnodetransplant.wordpress.com/2013/05/07/two-years-after-lymph-node-transfer-in-new-york/

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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

 

Sometimes Lymphedema just feels awful!!

As we approach world Lymphedema day on March 6th I am sharing stories of what it is really like to have Lymphedema … This was posted a while ago but I felt it would be good to share again …. If you would like to share your story please email me at helenbrd@bigpond.net.au Just write your story as an email and I will create a post out of it … Thanks Helen

My Lymph Node Transplant

This article was sent to me by Jennifer, she wanted to be able to share her anger and grief at the way Lymphoedema has changed her life. To let people know that we are just men and women trying to deal with a very difficult on going situation. That we are human in our sorrow and anger at what has happened after cancer treatment or because we are born with impaired lymphatics…. We were not prepared nor did we have any insight into what it meant to have Lymphoedema only fellow Lymphies understand that. We can stand like soldiers and be strong and positive but there are times that this is just not possible… There are days that we feel like Jennifer when she wrote this.. Thank you Jennifer for being so honest, I can relate to all you say and I am sure others will too.

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My Invisible Disease by Michelle

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When the invitation came to “Write your Story” as part of Lymphoedema Awareness month, my initial thoughts were ‘I don’t know where to start, it will be too long and boring, do I want to go over all that again’. It’s such a mixed bag – it has been painful, presented many challenges and also some good opportunities, like connecting with all of you now!

Long story short, I had endometrial cancer 13 years ago, I recovered and five years on I felt like I’d passed through the ‘danger zone’ and was doing fine. I went to some hot springs, got in to sooth a sore back and the next day my leg began to swell. That was almost 8 years ago.
I knew what it was because I’d been given a sheet of paper when I left the hospital warning me to watch out for signs of Lymphoedema. I just didn’t realise it could appear so long after my surgery.
What I have found out about lymphoedema in the last 7 plus years has taken determination, courage and a tenacity to not give up in the face of consistent messages that there’s no cure, your only options are DLT, MLD, compression garments, and don’t get bitten by anything!” Like probably most of you, felt reluctant to take that lying down and so started the long search! I did find other things that would help along the way, like hydrotherapy, rutin powder and a low carb diet, to name a few. I’ve also been assessed as suitable for LNT but at present the only surgeon doing this surgery in Australia is not comfortable with transferring to the groin, which is where they need to go to make a difference for me.

Which brings me back to, how do we stay positive and not give up when the doors turn into walls? Rather than go into the physical aspects of the struggle with lymphoedema what I really want to talk about is how it impacted me emotionally and psychologically. Just in case I’m not the only one 🙂 First was the impact of realising that ‘I’ve got this thing but no one seems to know much about it’. GP after GP stared blankly when I said I had lymphoedema. I found a massage therapist who had been trained in lymphatic drainage massage and had developed a small business providing massage, bandaging, compression garments and creams etc. I had to travel 7 hours by car to see her. None of this was subsidised and represented a substantial cost upfront and ongoing. I wrote to Lymphoedema experts to see what else I could do. I ended up frustrated because the bottom line was, there was not much other than the standard maintenance therapies that seemed to work.

I recently asked myself, what is it about lymphoedema that makes it so invisible as a condition within the medical model? I’m not sure, but I’ve wondered if lymphoedema is seen as a blip in the otherwise positive story of saving people from cancer? Perhaps medicine doesn’t really want to acknowledge that a surgical intervention may have created something worse than what it was trying to cure. I’ve had people say to me ‘well, at least you survived’ and this is true but it’s not the whole story! And this is the main point I want to make, it takes an enormous amount of inner strength to keep moving forward when you’re left alone to find your own solutions, cover the cost of treatments and garments, deal with the constant worry of cellulitis, the sense of isolation from your healthy friends and wondering where will this all end, how will I manage old age? At times this has felt truly overwhelming!

One positive thing my GP did recently when I went into a mini melt down during a visit, was to suggest I have a mental health plan (in Australia this is subsidised sessions with a psychologist). At least mental health is subsidised! I mean, initially I was horrified. The GP thinks I’m nuts!!!! But the truth was that I was starting to sink under the struggle of being an ‘invisible’ person with an ‘invisible disease’. So I went along for a session and it turned out that this psychologist specialised in Mindfulness meditation. I signed up for an 8 week course and that made a huge difference to how I was coping. I still struggle at times but meditation gives me a reprieve, a place to let go of the struggle. I’m not saying meditation is for everyone. It seems there are as many things that help as there are people with lymphedema. The main thing for me really was to acknowledge that I was struggling and that I had become isolated. Having people who understand you is so important. Forums like this blog site are good for breaking down our isolation. I’ve come to see how important that is!

My hope is that there will one day be proper resources allocated to lymphoedema, that others will not have to spend years piecing together a picture of what will help them cope. I hope there will be good emotional support for those facing life with lymphoedema, more research and clinical trials of possible solutions.

In the meantime, it’s good to know you are all out there. I’ve been so impressed and inspired by people’s stories of courage on this blog site! By Michelle

Thanks so much Michelle for sharing your story with us prior to Lymphoedema awareness month.. Helen

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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