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.

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

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.

http://DiseaseTheyCallFAT.tv

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.