I did it, I put on a swim suit .... It's black, my thighs are white.
It has a wee skirt that is supposed to help you feel more confident about your thunder thighs.... the skirt is too short to help much, other than to provide a distraction from the discomfort of being so exposed, by requiring me to tug at it, every other step. (my butt likes to work clothing items up to my waist).
The thing is, I am wearing it. I put this swimsuit on instead of underwear today - threw a dress over the top- it's a pain in the arse when I need to go to the toilet... but that's incentive to go to the pool... take my first swim in the last 10 years, in a public pool.
Why?
Why now? Why expose the poor unsuspecting public to my precious but disfigured body?
Because it will help me. Yup, I am doing this for entirely selfish reasons.
I want to help my body to heal, to work as well as it can under the circumstances.
I am doing it so that when I go back to my physio appointment I can say I have done it. That I have added to my "not fat because I am lazy" dossier.
I am doing it because I don't deserve to be ashamed of my body.
I am doing it because the resources are there in my community, for me to use. Peer pressure, social media and the diet industry has no right to psychologically bar my access to it.
So today, like a normal person, I will take a swim in a public pool! My body will feel the benefits of being near weightless in the water, the gentle massage of the water, the boost to my lymphatic flow.
Girl is gonna get her swim on!
Sunday, 24 January 2016
Wednesday, 29 July 2015
There are 5 types of Lipedema
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
There are 5 Types of Lipedema - I have type 4.
See all 5 types HERE
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.
Monday, 22 June 2015
Taking charge - trying to be as pro active as possible in managing my conditions
One thing I have discovered, is how hard it is to change your mindset regarding investing in yourself. Recently I have been looking at options regarding getting the best care and working out the best management plan for chronic pain, Lipedema and the mobility issues that come with it, and Dercum's Disease.
An opportunity has become available to go and have an appointment with one of the worlds leading specialists in Rare Adipose Disorders Karen L Herbst. She will be visiting Melbourne, Australia from the US, in October of this year to see patients and be part of a mini conference. I would love to get an appointment. To do so it will cost me about $3,000 in air fares, accommodation, and conference costs.
What I am struggling with is the head shift that is required to allow myself to spend that much money on myself. To clarify why, if you consider that for the last 30 years all I have ever heard about improving my health has revolved around "If you would just exercise more and eat less, all your health problems will go away" and "If you're not losing weight you're not trying hard enough with your diet and exercise - you lack will power and commitment" Now with a diagnosis that finally confirms this permanent fat suit is not my fault I am supposed to be able to just find a way to stop the guilt and in adequacy and self hate and stop punishing myself for not being able to be thin.... its not as easy as it sounds.
Where do I find the courage and desire to invest in myself?? Where do I find the courage to ask for help? How do I learn to trust people with my physical problems when I have been vulnerable to so much judgement for so long?
I realized I had been fighting the inner voice that kept saying, "you will probably end up not being able to walk or take care of yourself because you don't deserve help. You're just a fat pig."
Without this Lipedema diagnosis, a large part of society would be saying this to me, not just my inner voice.
So how do I learn to love myself enough to invest in myself, when I have been taught to hate myself for most of my life. My body will always be outside of societies norm, from an asthetic perspective I am disfigured for life. How does one find self worth without a physical body that looks normal? In a world that places so much emphasis on looks?
Every time I have to pick the most sturdy piece of furniture to sit on or sleep on for fear of breaking it. Every time I have to be cautious in using peoples toilets, in case I break their toilet seat, every time I have to excuse myself from fun activities because I am too heavy to participate, I love myself a little less. How can I change this? If I am every going to be able to do what I need to do to be as mobile and healthy as possible - I have to find a way to stop saying to myself - you deserve to die and find a reason, from somewhere to convince myself that I deserve to live.
An opportunity has become available to go and have an appointment with one of the worlds leading specialists in Rare Adipose Disorders Karen L Herbst. She will be visiting Melbourne, Australia from the US, in October of this year to see patients and be part of a mini conference. I would love to get an appointment. To do so it will cost me about $3,000 in air fares, accommodation, and conference costs.
What I am struggling with is the head shift that is required to allow myself to spend that much money on myself. To clarify why, if you consider that for the last 30 years all I have ever heard about improving my health has revolved around "If you would just exercise more and eat less, all your health problems will go away" and "If you're not losing weight you're not trying hard enough with your diet and exercise - you lack will power and commitment" Now with a diagnosis that finally confirms this permanent fat suit is not my fault I am supposed to be able to just find a way to stop the guilt and in adequacy and self hate and stop punishing myself for not being able to be thin.... its not as easy as it sounds.
Where do I find the courage and desire to invest in myself?? Where do I find the courage to ask for help? How do I learn to trust people with my physical problems when I have been vulnerable to so much judgement for so long?
I realized I had been fighting the inner voice that kept saying, "you will probably end up not being able to walk or take care of yourself because you don't deserve help. You're just a fat pig."
Without this Lipedema diagnosis, a large part of society would be saying this to me, not just my inner voice.
So how do I learn to love myself enough to invest in myself, when I have been taught to hate myself for most of my life. My body will always be outside of societies norm, from an asthetic perspective I am disfigured for life. How does one find self worth without a physical body that looks normal? In a world that places so much emphasis on looks?
Every time I have to pick the most sturdy piece of furniture to sit on or sleep on for fear of breaking it. Every time I have to be cautious in using peoples toilets, in case I break their toilet seat, every time I have to excuse myself from fun activities because I am too heavy to participate, I love myself a little less. How can I change this? If I am every going to be able to do what I need to do to be as mobile and healthy as possible - I have to find a way to stop saying to myself - you deserve to die and find a reason, from somewhere to convince myself that I deserve to live.
Monday, 1 June 2015
The Disease the call Fat - The Lipedma Project
There is an amazing lady called Catherine Seo, she has done fabulous work in getting a whole bunch of medical professionals together to put a symposium and a movie on Lipedma together!
She has a web site here is the link The Lipedema Project
Got this email from Catherine yesterday
She has a web site here is the link The Lipedema Project
Got this email from Catherine yesterday
It's now June 1 for our sisters in Australia, which means Lipedema Awareness month has officially started.
Here is your link for FREE access to the documentary The Disease They Call FAT for your viewing.
You will be able to access it from June 1-30 online. Beginning in July we will have High Definition downloads, DVDs, and many extras.
It's been an amazing journey for the past few years making this film. So many people have been involved to get this far. Now with you as part of it, we can go even further. I'm sure this film has had a huge impact on you. It's our goal to get as many women as possible to see it. Please join with us and help us spread the word, share with your doctors, friends, and others who can benefit.
Thanks,
Catherine Seo, PhDc
and
Mark L Smith, MD, FACS
Directors, The Lipedema Project
So the link takes you to a fab movie about Lipedema and a bunch of ladies that have shared their stories.
It's worth watching.
I plan to watch it again, and take some notes.
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