When I first discovered that I had Lipedema, I was trying to explain it to a friend. They looked it up and then questioned me because they had read that "Lipedema means you have big legs" - and they had observed that "you're kind of big all over"
There are 5 Types of Lipedema - I have type 4.
See all 5 types HERE
Wednesday, 29 July 2015
Early diagnosis is so essential
Today I stumbled across a YouTube video, that tells Silke B's Lipedema story.
Silke, was diagnosed in her 20's and has pursued 10 years of compression stockings and manual lymphatic drainage massage 3 times a week. Even with these helps, she is now considering looking into a special kind of Liposuction procedure that has least negitave impact on the lymphatic system. The procedure needs to be done by a surgeon that is familiar with Lipedema and will use WAL or tumescent techniques. Dr Stutz of Germany is the most experienced surgeon in these techniques but increased awareness of Lipedema means that more and more surgeons are doing the procedure.
I am happy for Silke, that she has that option - even though her governments health system does not cover the operation. (that needs to change too)
I am, however, so, so sorry for myself, that I was never diagnosed in time to even pursue the stockings and massage option. I am a lady trapped in a fat suit, that I never created and that I cannot escape from.
I enjoyed watching Silke story, and I think you should watch it too. Silke.B's Story
Apart from sad, about my own story, I feel even more impassioned to pursue being involved in putting advocacy packs in place for people wanting diagnosis, it needs to be diagnosed at stage one, to avoid the stage 3 and 4 that I am living with now. No one deserves to live like this when they are only a diagnosis away from halting the onset of this horrible disease - The Disease They Call Fat- Lipedema.
Silke, was diagnosed in her 20's and has pursued 10 years of compression stockings and manual lymphatic drainage massage 3 times a week. Even with these helps, she is now considering looking into a special kind of Liposuction procedure that has least negitave impact on the lymphatic system. The procedure needs to be done by a surgeon that is familiar with Lipedema and will use WAL or tumescent techniques. Dr Stutz of Germany is the most experienced surgeon in these techniques but increased awareness of Lipedema means that more and more surgeons are doing the procedure.
I am happy for Silke, that she has that option - even though her governments health system does not cover the operation. (that needs to change too)
I am, however, so, so sorry for myself, that I was never diagnosed in time to even pursue the stockings and massage option. I am a lady trapped in a fat suit, that I never created and that I cannot escape from.
I enjoyed watching Silke story, and I think you should watch it too. Silke.B's Story
Apart from sad, about my own story, I feel even more impassioned to pursue being involved in putting advocacy packs in place for people wanting diagnosis, it needs to be diagnosed at stage one, to avoid the stage 3 and 4 that I am living with now. No one deserves to live like this when they are only a diagnosis away from halting the onset of this horrible disease - The Disease They Call Fat- Lipedema.
Friday, 17 July 2015
The Lipedema Project
Soooo exciting things are happening for me with The Lipedema Project! I have just gained an internship with The Lipedema Project! This means I will be able to help spread the word about Lipedema but also have access to some great resources and will be able to keep up to date with everything that is happening overseas with Lipedema.
I am in New Zealand, other than my doctor, I don't know any other medical professional that knows of Lipedema or would consider diagnosing it. It is very isolating, and I can't help think that if I feel isolated that others with this disease, diagnosed or not, will be feeling alone too.
I want there to be resources available right here in New Zealand. I want a New Zealand support group. I want our doctors to be informed and have Lipedema acknowledged in New Zealand, as a disease that affects mobility and quality of life.
There is an amazing documentary called The Disease They Call Fat by Catherine Seo that is now available on pre order through Lipedema Simplified webpage.
Buy one, watch it, share it and buy one for your medical practitioner. If you get one now you get a discount and an even bigger discount if you buy two. (one for you and one for your doctor) here is the link for the discount
I am in New Zealand, other than my doctor, I don't know any other medical professional that knows of Lipedema or would consider diagnosing it. It is very isolating, and I can't help think that if I feel isolated that others with this disease, diagnosed or not, will be feeling alone too.
I want there to be resources available right here in New Zealand. I want a New Zealand support group. I want our doctors to be informed and have Lipedema acknowledged in New Zealand, as a disease that affects mobility and quality of life.
There is an amazing documentary called The Disease They Call Fat by Catherine Seo that is now available on pre order through Lipedema Simplified webpage.
Buy one, watch it, share it and buy one for your medical practitioner. If you get one now you get a discount and an even bigger discount if you buy two. (one for you and one for your doctor) here is the link for the discount
Sunday, 5 July 2015
My confronting self
Today I went to play music with my band Hot Diggity, we're the only all female bluegrass band in New Zealand, and we do pretty well.
The venue was the vintage markets in beautiful Matakana, and it was sponsored by a pretty awesome New Zealand magazine called Glory Days. We had a great time, I felt good singing, I did well, people stopped and stared and listened when they heard us, some stayed for nearly two hours.
I had taken pain medication so my pain levels were manageable, I was wearing a retro frock, I even had my hair done with victory rolls at the on site beauty parlour, as it was a vintage event and then I lined up with the four other lovely ladies (also frocked up) in my group and enjoyed the applause and great comments . It was a delicious feeling.
Then I saw the photos, on the computor, on Facebook.
Even when I feel good, I look odd. I look exactly as one would expect a lady in a fat suit to look.... Fat. Not a little bit chubby, really FAT.
I am finding it really hard to accept myself, I am struggling with the idea, it's never going away. I make progress and I tell myself why I am worthwhile and worthy, and then I see photographs of how the world sees me and I am horrified.
I feel so disconnected from my body, I don't feel the way I look, and yet there it is... no amount of make up or hairspray, or jewellery or flattering clothing will ever conceal it.... so what now....... *crickets* ........
How do I get past this? I can't explain it to everyone who sees me... even if I handed out fliers and educated the world as to why I look like I do..... I still can't stand to look at myself. Lipedema has disfigured my body and trashed my self confidence. I don't know how to get through this, I don't know how to escape from hating how I look and feeling powerless to change it. ..... I will think on it, and get back to you.
The venue was the vintage markets in beautiful Matakana, and it was sponsored by a pretty awesome New Zealand magazine called Glory Days. We had a great time, I felt good singing, I did well, people stopped and stared and listened when they heard us, some stayed for nearly two hours.
I had taken pain medication so my pain levels were manageable, I was wearing a retro frock, I even had my hair done with victory rolls at the on site beauty parlour, as it was a vintage event and then I lined up with the four other lovely ladies (also frocked up) in my group and enjoyed the applause and great comments . It was a delicious feeling.
Then I saw the photos, on the computor, on Facebook.
Even when I feel good, I look odd. I look exactly as one would expect a lady in a fat suit to look.... Fat. Not a little bit chubby, really FAT.
I am finding it really hard to accept myself, I am struggling with the idea, it's never going away. I make progress and I tell myself why I am worthwhile and worthy, and then I see photographs of how the world sees me and I am horrified.
I feel so disconnected from my body, I don't feel the way I look, and yet there it is... no amount of make up or hairspray, or jewellery or flattering clothing will ever conceal it.... so what now....... *crickets* ........
How do I get past this? I can't explain it to everyone who sees me... even if I handed out fliers and educated the world as to why I look like I do..... I still can't stand to look at myself. Lipedema has disfigured my body and trashed my self confidence. I don't know how to get through this, I don't know how to escape from hating how I look and feeling powerless to change it. ..... I will think on it, and get back to you.
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