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

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. 

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

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.

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.

Challenges in a fat suit

Today I have been thinking about some of the challenges being trapped in a fat suit, presents.

1. Getting in and out of our family car (which happens to be very low to the ground)
A simple thing that people do every day, sometimes many times a day. For me, going anywhere in the car, requires a lot of mental motivation, simply because I know it's going to hurt. Not just a twinge, actual breath sucking, teeth gritting, eye watering pain. The twisting, the lowering, slipping and free falling, the getting out (I end up getting in and out multiple times because I have a 2 year old who drops super important things like his dummy or bag of chips or cant put his own sunglasses on etc)
That's just the physical side, then I need to mentally prepare for the humiliation and prejudice that comes with having to try and get in and out of the car- in public.
I am 38, the average 38 year old does not have trouble getting in and out of their car. However the average 38 year old weighs anywhere between 70-80kg and I weigh twice that. If you count that the largest proportion of that weight is carried below my waist, you can imagine there are some mobility issues. When people see me struggling to get in and out of my car, their first assumption is that I am just a big fatty who should lose some weight so they can get in and out of their car properly. I get that, but the thing is, while I am a big fatty, if I could lose this weight I would have. People who have Lipedema, regardless of dietary restrictions find that they are unable to lose weight of the Lipedema affected areas of their body. Even exercise does not reduce the areas and in some cases makes the pain even worse.
I can't explain to people that see me and make assumptions, that the reason I look and act this way is because of a medical condition, and even if I could, it's not everybody's business. That doesn't stop me feeling judged, misunderstood and wrongly accused every time someone stares, shakes their head or obviously looks away in disgust. I am a strong woman, but being under constant scrutiny is hard. It leaves scars, and they are what I revisit every time I have to drive my car.

2. Shopping with a 2 year old 
Two year olds like to run. And hide. And lie on the floor. And throw things. 
The biggest challenge I face shopping with my 2 year old is the road danger, this kid is quick and still learning about staying put when mum tells him to. I have had other members of the public have to grab my boy in order stop him going on the road. It's so bloody scary, and completely humiliating. Honestly, I don't think it is that safe to take my boy out on my own because I really can't move fast enough to catch him. but I don't have a choice. I still have to do things in town, mail to post, bills to pay, groceries to get. I have been using the pram but my boy is tall and he is actually too big for it. His little feet drag on the ground.

3. Housework 
When the only time you don't feel pain is when you are not moving, it's not exciting to do housework. BUT it does feel great to have a clean and tidy home.... I have to do my housework in spurts, 10 minutes here, 15 minutes there, otherwise, the pain is too much and I seize up. I mean like actually seize up where my muscles wont respond to my minds commands. When this happens, it's difficult. My hands wont type or get a firm grip on anything. I get permanent pins and needles and that tingly feeling down my arms just from pushing the pram or holding the steering wheel in the car. My legs will not lift high enough to step over things even though my brain is able to judge the distance required accurately, my muscles do not obey my brain message and I trip over things. I can't open lids on anything. sometimes I can't use scissors. I think this is due to having a secondary RAD (rare adipose disorder)called Dercum's Disease. If you have Dercum's you get growths of fatty lipomas all over your body. I have a large lipoma in my armpit, near my breast. I believe it contributes to a large portion of my arm probs, pressing on the nerves, restricting lymphatic flow and causing numbness and pain at the same time. 
My best kind of house work is anything I can do - standing upright - like dishes - I can do that for 10 or 15 minutes before my sciatic nerves are screaming. then I take a break for a bit and get back to it. My worst housework is the kind that involves bending, twisting or getting down on the ground. I can do all of those things,  but they are EXTREMELY PAINFUL. I have lipomas all down my back and sides and my legs and hips a badly affected by lipedema and especially my knees which make pivoting difficult. 

4. Sleeping
Sleeping is not pleasant for me. It hurts to lie down for long periods of time, it is difficult to turn over in bed, the weight of the blankets hurt my feet and legs. I also require a foam ramp and a CPAP machine to breath as I have severe sleep apnea. When I wake up every morning, I can hardly move because my body has seized up overnight. It takes a while to get going. 

The Diagnosis

When I pulled up outside the doc's office, my heart was beating and I felt shaky. All my past experiences with doctors offices, bar one, had been bad. Was this one going to be any different? 
I had precursed my visit with an email full of information, I had booked a double appointment, I had written a letter to the doc, letting them know what I thought I had, how sure I was that I had it, how bad my past doc experiences had been and stated bluntly that if they felt they were not interested in hearing me out and trying to work with me on it, to let me know in advance of my appointment so I could cancel it, and add their names to a long list of unhelpful GPs.

When my name got called up, I went in, and at first I had the flusters. I explained that it was white coat anxiety and to bear with me. She had read the information, and no, she had not seen or heard of Lipedema before I sent her the information. I gave her some background, and we commenced the examination. With Lipedema there is no basic/simple/cheap blood test or scan you can do, a diagnosis has to be made by manual examination and sight and doctors' lack of knowledge and experience with Lipedema means its hardly recognised in the medical field. HOWEVER, due to current work by some RAD (Rare Adipose Disease) doctors like Karen L Herbst, that is beginning to change, and in some small tiny way, I am excited to be part of that shift.

After the examination, the Doc agreed, based on the research she had done prior to my arrival and on having seen and examined my legs and upper arms. She agreed. A medical doctor had listened, researched, taken the time to examine me and concurred I did indeed have Lipedema...........

A huge wave of relief flooded over me, a massive sense of validation, for the first time in my life a doctor had partnered with me to help me find a diagnosis of something I had known wasn't right or normal for most of my life. 

BUT THEN IT HIT ME....
Oh my frickin gosh, I have Lipedema, I have it for life, it's only going to get worse and there is very little I can do about it.... I was sentenced from birth to be a LADY IN A FAT SUIT, literally imprisoned, held captive, a thin person encapsulated in fat suit that I can NEVER TAKE OFF. 
I didn't get here by overeating, by lack of activity, by any fault of my own. Yet, I will live with the consequences of those who have - until I die....... 

I mean I KNOW it's not cancer, but the realities of being trapped in a body that weighs 159kg (350 pounds) and not have the option to change that, is not fun, easy or pleasant in any way shape or form. 

So what is Lipedema exactly.... Wikipedia has this to say...

Lipedema or lipoedema is a chronic disorder of adipose tissue generally affecting the legs, which causes the legs and sometimes the arms to accumulate fatty tissue.^[1] It is distinguishable by six characteristics:

1. it can be inherited;
2. it occurs almost exclusively in women;
3. it can occur in women of all sizes, from the seriously underweight to the morbidly obese;
4. it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles;
5. unlike normal fat, lipedematous fat generally cannot be lost through diet and exercise;
6. a pathognomonic indicator of lipedema is that the feet are spared.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery, i.e., surgery of the uterus, ovaries, or fallopian tubes or any surgery with general anesthesia. Lipedema can also be triggered by an extremely stressful situation such as a death in the family or a divorce because cortisol levels increase, causing an inflammation cascade, almost always misdiagnosed as simple weight gain. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedematous fat cells and to alert patients to their heightened risk factors so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-pubertal female population, with estimates of 17 million women in the US, and 370 million women worldwide affected

Here is my Facebook announcement:

I got an official diagnosis today. I have Lipoedema. I am both horrified and relieved at the same time.  WOW. 

Lipoedema is a fat disorder that is often mistaken for simple obesity, but unlike obesity, it is not caused by bad eating habits or lack of exercise - in fact Lipoedema DOES NOT respond to diet and exercise AT ALL. In a nutshell, the reason why I am fat, unable to get thinner and may well get fatter is COMPLETELY out of my hands. This is a genetic condition. It is also known as the painful fat syndrome - which is why I am in pain a lot and have mobility issues. That sucks. 

It's taken 33 years of beating myself up and putting myself through hell trying to lose weight to get to this point. I have had so many suggestions, insinuations and some direct insults directed at me by "friends" family and health professionals about my weight and my failure to reduce it; so many wasted years and so much energy gone into something I was never going to be able to achieve. I am fat - and that is NEVER going to change :(  That said, I have the rest of my life to live - sure I am fat, but It's not my fault and if anyone wants to pay me out for that they can kiss my extra large derriere.  

On the plus side (excuse the pun) because I have tried so hard to have a healthy lifestyle for so long with the hope of losing weight (which obviously never happened) - I am extremely healthy and do have any of the negative health issues I would have if my fat were caused by obesity - my heart, cholesterol levels and blood pressure are all in the healthy zone and I am not diabetic or even pre diabetic.

In time my size may increase, and my mobility may reduce, so from now on I am going to start doing some of the things I was going to put off till I lost "the weight" my first goal is to walk the Karangahaki Gorge walk. Hello, new life.