What is lipedema/lipoedema and what does it look like?

Lipedema is a fat disorder, and can be distinguished by 5 characteristics.

1. It occurs nearly exclusively in women
   
   It is inherited. My mother, although she never became obese, has the characteristic early stage legs. My dad played rugby, and is stocky, so I got it from both sides I guess.
2. It can occur in women of all sizes, from the seriously underweight to the morbidly obese
3. It involves the excess deposit and expansion of fat cells in an unusual and particular pattern - bilateral, symetrical and usually from the waist to a very distinct line just above the ankles. The feet are normal size.
4. Unlike normal fat, lipedemic fat cannot be lost through diet and exercise. My plan is to lose as much non-lipedemic fat and then research my options.
   

These are not my legs. I will have to screw up the courage to post my own legs on the internet. I haven't worn dresses for years, so no one gets to see my legs in real life. I will do it though in the next few days, just for the sake of honesty. I know that I am more fortunate than others. There are ladies out there that suffer dreadfully. I know that there are many who can no longer wear jeans or trousers because their legs will not fit. I know that there are women out there who have lost their mobility.

Add to this a couple of other things. The fat can be painful. My husband loves having his legs and ankles squeezed. I simply cannot tolerate it.

The condition can deteriorate so that the expanding fat cells constrict the pathways of lymphatic vessels and sufferers can develop secondary lymphedema.

Doctors in the US and Canada are largely unaware of the condition. It seems to be more common in Europe, particularly in Germany and there are doctors there who specialize in treating the condition. There is not a lot of research being done into the condition.

Surgical options like liposuction have been extremely controversial. Frankly, in the past it has made the condition worse. The thrusting motion used in conventional liposuction tends to play havoc with the delicate lymphatic vessels in the lower legs. There is however a new method, the water-jet assisted method, which uses water and not heat or violent motion to break down the adipose tissue. There have been experiments done that show that it can be done without disturbing the lymph system. This is the method I think I will eventually go for but I am waiting, planning and doing a lot of reading.

The First day of skiing

I love skiing. I am fat, but when I ski, I'm not. I don't feel as earthbound as I do in everyday life. I love the swooping down the hill and the carving of turns. I love the sound of my skis whooshing across the snow. I love everything about it. I'm not anywhere near an expert, but I feel so pretty when I ski. I don't want to lose this thing that I love. It will happen if I cannot lose weight. It will happen if I can no longer fit my legs into ski boots. It's a near thing. Yesterday it took two people, besides myself, a good long while to wrestle the latch of the ski boot to the red safety latch.

This blog is about my quest for normal weight and normal legs. I would like to be able to go into a ski store and choose ski boots because I like them, and not because they are the only ones that will ever squeeze around my legs.

I read Lyn's blog www.escapefromobesity.blogpot.com regularly, and when I read it this morning, she asked what her readers were going to do with the rest of the year, and the idea for this project came to me. Quite possibly, no one will ever read my blatherings, but I need to put it out there, and make it something real for me. That way, I can't deny the problem and I need to get on with it and do something positive about it. I don't think it will be easy, but I promise to myself (and to readers, if I ever have any) to keep it honest.

I have a condition called lipedema. It can also be spelled lipoedema. It should be Latin for "bog ugly legs". It is a fat disorder which begins for many, as it did for me, with the onset of puberty. My legs, before then were just normal legs. Puberty hit, and my ankles disappeared. My legs were bigger than my friends' legs, even though I weighed the same, or less. My legs looked like tree trunks, heavy all the way to the ground. I was like a ballerina above the hips; all fine bones and slim muscles, but below the hips I was more russian peasant, and OLD Russian peasant at that. It was pretty upsetting, and all the more so because I didn't know what it was. I just had big, fat legs, and I felt faulty.

Then, a couple of years ago, I found a website that put a name on my affliction. I looked at these pictures and I saw my legs. It was comforting in a way to have a name, but not comforting at all in that there is no cure. Lipodema doesn't respond to dieting and exercise. So, what should I do? Give up? Get older, fatter, heavier? Lose my mobility? Get Lymphedema? There are folks in the Lipo/lymphedema community who just say, "accept it, there is nothing you can do". I can't do that. Just no bloody way. So, what is my plan?

I am going to eat clean, exercise hard and often with the goal of reducing my non-lipedemic weight. I KNOW I can do this. I KNOW it. Then, when I have reached a "normal" BMI, even though my legs will still not be normal, I am going to be assessed by a physician for water-jet assisted liposuction, which is a new technique that shows promise for this condition.

So....these are my goals.

1. To be able to do up my ski boots unassisted. This is possible. I did this last year. It wasn't easy but I could do it.

2. To get stronger and lighter so my skiing, and my day-to-day lifestyle improves.

3. to get to a BMI within normal limits

4. To have liposuction on my legs.

5. To be able to walk into a ski shop, try different things on without the horrible embarrassment of knowing that nothing will work, and choose Ski boots because I like them.

So. That's the beginning. I will get organized with photos, but at least I've made a beginning.