Celebrating 100,000 blog views

By Maggie McCarey, Stefanie Gwinn-Vega, Christina Williams Routon & Tatjana van der Krabben

We’ve been posting on social media about a surprise, and to us it truly is. We certainly have been looking forward to this moment, guessing what day it would happen. And here it is!

In November 2012 we started the LIPESE blog with this blog post:
My Experience - MLD (Manual Lymph Drainage) and Compression Therapy

 

3 years and almost 100 blog posts later we have hit 100,000 blog views! Early Christmas morning, no less.

Thank you for reading the LIPESE lipedema blog

Not even in our wildest dreams did we anticipate our blog to be this well-read, or that we would write this many blog posts. It has proven to be a valuable platform to spread realistic information about lipedema and lipedema treatment. It has proven its worth particularly for those living in corners of the world where there is no expert help present, or for those unable to travel to the conferences to hear about the latest research, or those who can’t afford to see an informed specialist. We sincerely hope it will continue to be that little light out there.

Giveaway to celebrate 100,000 blog views

To celebrate this milestone of 100,000 blog views we are giving away 10 copies of Tatjana’s ebook Welcome… which will appear January 2016. Part of the proceeds of this book will go towards lipedema research. For Lipese it will hopefully mark the start of supporting significant lipedema research financially.

If you would like to win a copy of Welcome…, you can enter by leaving your name in comments. On January 12, 2016 we’ll draw the winners!

Losing circumference and weight with lipedema legs

By Tatjana van der Krabben

Losing weight from your legs and losing circumference on your legs. Despite having lipedema. Can it be done? Many say no. Some say yes. Now, what is it? It’s individual, that’s what it is. It’s always individual cases of people saying they managed to lose weight and they do it with very personal, customized regimes.

But what makes weight-loss in lipedema legs possible for some?

There are 3 factors that we know of. If you’re lucky one or more of these factors could help you reduce mass on your legs (and lipedema arms).

Inflammation

Although still not broadly supported, and certainly not in literature, it is believed that lipedema flares up with inflammation. With inflammation not only comes pain and fatigue, but also swelling. If you manage to reduce inflammation, you may be able to reduce the swelling. You’ll mostly shift water weight and toxins, but as a big added bonus you’ll feel better for it, too.

We don’t respond all alike to inflammatory factors. Some of us have cut out so many foods, additives and allergens they are clueless what else could possibly be causing the remaining inflammation. Others drop bread and sugar to a degree and shed pounds instantly. No, fairness is not on the table in the lipedema world.

An untreated serious edema component

If you have lipo-lymphedema or a strong edema component with your lipedema for another reason and you haven’t started treatment for that, there’s a lot to gain. Or to lose, actually. The more edema you have, the more water weight could be shifted.

Could, because the edema component is there for a reason. If you’re prone to swelling, it won’t magically disappear with (self) management. Or perhaps you can’t afford treatment or don’t have access to proper treatment. It takes hard work and more so dedication, but with untreated edema there’s usually margin for improvement there.

Amount of lipedema tissue in your legs

The top two factors I was aware of. But this one was an eye opener:

We don’t all have the same amount of lipedema tissue in our limbs.

As explained to me in a presentation by a therapist specialized in lipedema: some of us are lucky and still have a good amount of normal fat cells in their legs. That would be good news since normal fat cells do what the fat police wants: they do respond to diet and exercise. And there’s your personal margin for improvement. Assuming your thyroid is on top of his game and you’re physically able to exercise and, and…

Unfortunately all these factors are highly individual. This makes good results with diet, exercise, supplements and what not also highly individual. “Because I did it” is not proof you can lose lipedema weight. Most likely, if you have lost weight, you lost water weight and/or normal, unaffected fat, which is great, of course. Even if you don’t care too much about your size, dragging less weight around with you is always easier. It also may very well be a sign you are not only managing your weight, but also your lipedema in a way you experience less symptoms.

I would say (self) management of lipedema matters always. Whether you manage to drop weight or not. There are other things to gain from lipedema management: less discomfort, less pain, less fatigue and improved mobility. As I get older I must say I value these factors more than that number on my scales.

The relationship between cortisol and estrogen - Part 4

Corticotropin-releasing hormone (CRH), the “master stress hormone” and the Greek Chorus

By Maggie McCarey

THE GREEK CHORUS: Each of us has a Greek chorus inside our heads, every waking and sleeping moment of the day.  Unbeknownst to us, they call upon our  hypothalamus to coordinate their reaction to everything we do.  Most often they are messengers of doom.

 

THE HYPOTHALAMUS: Vanessa Bennington describes the hypothalamus in What You Don’t Know About CRH Can Kill You. She says: Our hypothalamus is the control center. It receives messages from within the body that tell it if we are indeed in stress, and then the hypothalamus coordinates the actions needed for the body to react. Our emotions, skin temperature, pain level, and electrolyte balance are all things that the hypothalamus compares to our baseline. Basically, the hypothalamus functions as the epicenter for the mind-body connection.  http://breakingmuscle.com/health-medicine/what-you-dont-know-about-crh-can-kill-you

 

Now, while we think of stress as negative, it is also positive: emotions and memories evoked at a wedding, for example, the thrill of a winning lottery ticket or receiving an unexpected compliment, a cool drink on a hot day. And, a stressful event can be contradictory like watching the Olympics, and feeling both joy and sympathy, when another country  falls behind your country’s team. Butterfly surges in the tummy are perfect happy examples of the hypothalamus at work, too.

TRANSLATED: you are what you fear; what you hate; what you sing; you are what you love; what you need; what you pray ….YOU ARE WHAT YOU BELIEVE because your emotions trigger your hypothalamus to receive all external stimuli, without judgement,  and then to send it on to the appropriate department, like your tear ducts to make water, the vocal chords to sing or scream, the hands to clinch, or the feet to run.

HOW THE GREEK CHORUS CAME TO BE:  They are the sum total of our reactions to everything we have ever encountered outside our bodies perfect, as well as our genetics. If  what you felt at any given moment, was only one or even a dozen emotions, life would be grand, but that is not how we live, particularly in this age with the world, good and evil, at our finger tips. We have layers of complexity coming at us all of the time: commutes in insane traffic, our workload, a multitude of relationships to maintain, technology to learn, 15 hour a day schedules multiplied by the number of family members we have, financial burdens, climate change, sickness, childhood trauma, fear of flying, dating, divorce, boredom, rain, drought, no food in the fridge, tires to buy, fear of death, and desire for salvation, all heading to the hypothalamus (clearing house) at the same time.  As a result of selectivity, some members of the chorus dominate; others are silent. There’s just not enough time in a day to cope with all of it.

 

CHRONIC STRESS and CORTICOTROPIN-RELEASING HORMONE (CRH):  Corticotropin-releasing hormone is also called the “master stress” hormone.  It is released by the hypothalamus in response to stressful stimulation. Do you see where this goes?  Again quoting Bennington: CRH functions as both a hormone and a neurotransmitter. CRH’s role as a hormone is to stimulate the anterior pituitary glad to release adrenocorticotropin hormone (ACTH). ACTH then reaches the adrenal cortex in the adrenal gland, which causes the synthesis of cortisol as well as several other hormones. So, when a stressful situation occurs, CRH goes up and eventually stimulates more cortisol production.” http://breakingmuscle.com/health-medicine/what-you-dont-know-about-crh-can-kill-you 

 

If you are chronically stressed you will also be chronically over-stimulated and you will make high levels of cortisol  so that daily living will trigger and affect your body perfect like a wrecking ball coming at you.  Bennington says:  “Chronically increased cortisol levels …can lead to all sorts of issues like the redistribution of fat from the thighs and buttocks to the abdomen and upper back, insulin resistance, fluid retention, high blood pressure, decreased immune function, muscle and connective tissue wasting (joint pain, anyone?), and inhibited peptide and hormone production. Absolutely 0% of that is good for health or fitness.”

Chronic Stress?  That’s the full Greek Chorus singing Mozart’s Requiem on a loop day after day.

If you read the first three blogs on cortisol and estrogen, you may have just raised your cortisol a little….but there is more.

UNTIL WE BECOME AWAKE ENOUGH TO TRUST OUR HIGHER SELVES AND THEIR INNATE ABILITY TO COMMUNICATE WITH OUR BODIES PERFECT, WE WILL NOT ACHIEVE PEACE WITHIN. NEITHER WILL WE ACHIEVE DETENTE  WITH OUR FAT AND SELF-LOATHING ILLUSIONS.  CHRONIC STRESS WILL CONTROL OUR LIVES UNTIL WE CAN HEAR  THE GREEK CHORUS’ KEENING FOR ITS LOST MOTHER AND RETURN TO SELF AS ONE WHO IS STRONG AND WISE.

We have to become good parents to our bodies, break through their pain in order to parley with lipedema. Our bodies do talk to us and they will cooperate with us when we are calm. They only want to be loved as they are.

Sneaking a poorly known medical condition into fiction

By Tatjana van der Krabben

Lipedema: a poorly understood yet common condition that causes the legs, hips, buttocks, and sometimes arms as well to swell with fat and fluid. Diet and exercise help manage the condition, but won’t make it go away. The swelling changes your appearance, is painful, and hinders mobility.

I devote a lot of time to raising awareness for lipedema, a condition I have myself. Some days, with social media already flooded with requests to share messages etc., you just can’t help but wonder: what else is there? On a sunbed on a gorgeous beach in the Caribbean, that question collided with another one: could I write fiction? I love writing different formats and fiction was still on my writer’s bucket list.

The clash of both questions was a happy one. Ideas started to come to me and evolved around a main character who conveniently has lipedema. Like many aspiring authors I was initially more like a perspiring author. It can feel silly to say out loud that you want to write a book, even after having published non-fiction already. Any book lover can tell you that a book is A Big Deal and writing one equally so.

In April/May 2013 I planned to go to New York and that location was firmly planted in my brain. The main character chose to stay there, so to speak. In May 2013 I was in Schenectady, New York and told Maggie McCarey, a friend, co-blogger with Lipese, and author, about my plan to write a book about a character with lipedema and asked her to be my editor*. From that moment on I truly felt like an aspiring author. I frantically took notes and pictures of locations I wanted to use. In June 2013 I started writing and in August I threw out what I had written so far. Idea vs. reality: a not so lucky clash.

I picked up the pieces and started over, writing nights. The setting was still New York City, but the lipedema became less prominent. First and foremost I wanted it to be a good book, not something that had to evolve around lipedema. After all, that’s not how we lead our lives. This condition gradually infringes upon our lives, but it doesn’t define you. Lipedema is something intangible until you – finally – figure out what it is. You may even take the symptoms for granted until someone points out this isn’t ‘normal’, which happened to me. It’s also how I worked it into the book.

Lipedema is not the plot, nor a key factor. Then why bother bringing it up in the book? I just hope this book will reach people who simply take an interest in the book itself and then casually learn a little bit about lipedema. In the end it will also make the main character, Anne, a little easier to understand; she’s not lazy or passive, but in fact she’s slowed down by pain and fatigue a lot of the time, which she, like so many of us until finally diagnosed, takes for granted for lack of answers.

WELCOME… will be self-published as an ebook. I haven’t even attempted to interest an agent or publisher. This is a story I want told as it is, including and specifically with the references to lipedema symptoms like subliminal messages. That’s the lipedema advocate in me. Also, for each book sold, $0.50 (of $3.99 sales price) will go toward lipedema research. I wanted to be free to make these decisions.

____________________________________________________________________

 

WELCOME… - Anne, a 22-year-old dreamer, gets invited to stay in an upscale Manhattan apartment by her aunt, a wealthy widow with a zest for life. All Anne needs to do in exchange for a rent-free stay in New York, is to watch her aunt’s cat for six months while she enjoys an extended vacation in the Caribbean.

It looks like a sweet deal, and a great opportunity to escape failing friendships and an overbearing mother. Anne eagerly commits to the cushy job, but soon learns the arrangement is too good to be true…

Stay tuned for release info via Facebook: https://www.facebook.com/TatjanaWrites/

* Although the book was written with the help and support of Maggie McCarey, it is not a project by Lipese. Since this project does aim to raise awareness and research funds for lipedema, it has been granted a blog entry on this platform.

Irene’s naked truth about lipedema

By Tatjana van der Krabben

Recently Irene Captijn started a website to raise awareness for lipedema. I’ve known Irene for some time and have worked with her on another lipedema awareness project: the Dutch lipedema film We want to keep moving. Like she had her heart set on making that film, she was passionate about this website. She had my attention in no time with a beautiful picture of her in UV body paint, a creation by Liliana Hopman, with the slogan: Are you brave enough to see my naked truth?

Time to have a chat with this amazing lady about her new project!

How did you discover you have lipedema?
Unfortunately it took a long time before I found out. I was always a little heavy. All my life I’ve been dealing with my weight and my being overweight. I saw one dietitian after another, but they always told me the same: “I don’t know what it is; your diet looks fine.” And so on. I had an obvious pear shape; the excess fat was all on the legs and hips. After my two pregnancies I couldn’t fit into regular pants anymore, not even plus size pants. I stuffed my legs into self-made, wide-leg pants and I can’t even sew!

One day, in the school’s playground, a mother approached me and gently brought up that her mother-in-law had legs just like mine and that she had lipedema. After I returned home I immediately googled that word and found Tilly Smidt’s website. My legs were exactly like the legs in the pictures I found on that website. My family doctor was not convinced and assumed it simply was a name someone had come up with for fat distribution that described a pear-shape as opposed to an apple-shape, nothing more. Luckily, my doctor was willing to refer me to a dermatologist who gave me a diagnosis on the spot. I was actually happy about the diagnosis. There was a reason for my shape. It wasn’t lack of effort or discipline that caused me to be overweight. Unfortunately that happy feeling didn’t last…

Where did you get the idea to be a body paint model?

I do notice my health is taking a turn for the worse, despite everything I do to manage my lipedema. But the most important reasons for my activism are my daughters and the fact that they, too, have lipedema and already in an advanced stage. My brain is on fire for the cause because I feel someone needs to shout out for attention. It’s not really in my nature to be the center point of attention, but when it comes to lipedema I’m very passionate. 

I’m sick and tired of being labeled fat and lazy by the doctors I encounter and that they refuse to treat me ‘until I start making the effort and lose weight’. To a degree I get it; I work in healthcare myself and I, too, was raised with the notion that being fat is all your own fault… Society sees me as a fat woman who really let herself go, but the feeling of injustice in this matter sticks and stings, unfortunately. I’m so ready to be finally met with a some understanding and insight. If raising awareness could be done at a larger scale, somewhere a group of doctors could get their wake up call from it and start focusing more on the causes of lipedema. At this point we don’t even know what the cause is! Research is incredibly important and unfortunately research is currently being conducted at such a small scale. There are so many women who need help NOW.

I always said I would even go naked if that’s what it takes to get attention for this miserable condition. And that opportunity is exactly what crossed my path: at work I met a young lady who spontaneously started to talk about her mother, Liliana Hopman, who placed third in the 2015 global bodypainting competition with UV body paint. She showed me pictures and BAM…the idea was born.

You created a website about lipedema. What kind of information can people find there?

I’ve worked as a doctor’s assistant for years. I’m well aware of the perception of most doctors: 10 calories in and 50 calories out is the road to weight-loss. Period. There is no other way. When too heavy you overeat and exercise too little. There are no other options in their mindset; it’s what they were taught. Through my website I want to offer different information. It’s basic and limited to a description of lipedema, where to get diagnosed and information on self-management. I limited myself to bit-sized information on purpose: doctors are not interested in reading lengthy texts to start out with. Especially not about women dealing with excess fat. After all, they assume to already know the answer to that problem. By keeping it short, odds are more in your favor they’ll actually read the information.

The site links to the more elaborate websites that are already around. That way you can get to more detailed information if you like. The website is also for women who believe they may have lipedema. I’m aiming for a short, accessible website, keeping all the information in one place and the opportunity to go more in-depth by clicking the links to other websites.

 What do you hope to accomplish through your new website?
Awareness! At some point the earth was believed to be flat, right? Perception can change and knowledge can expand! Well, big legs (and arms) are not always the result of overeating and laziness. This notion needs to sink in. We need our own Pythagoras among doctors to prove this, who could help open the eyes of other doctors to another reality.

If the website would inspire 1 family doctor to refrain from labeling his or her patient as obese, but keep an open mind and refer that patient to a specialist, I would consider my 'nude mission' to be a success. I also hope that women who do not know yet what is wrong with their legs, or women who do know, but want to inform others, will use the information on the website.

Most attempts to raise awareness in reality evolve around informing friends and relatives of patients. You would rather target doctors. Can you tell us more about that?

Informing your own circle of friends and family is incredibly important. But like with our Dutch film, if you’re not careful, you keep targeting the same circle of people. Who takes time to look at that film? Those most likely to are the patient, their relatives, a neighbor, a friend, possibly a few therapists. But how do you go from there? If you take that route and target your own circle of friends and family via social media, specialists won’t see it, family doctors won’t and so forth. What I’m actually hoping for is that the bodypaint will provide a different angle and attract a new audience and seduce them into checking out the website. I feel it’s art. Let me rephrase that: it is art! I’ve started out promoting the website via Facebook. I do also intend to promote the site through different channels in the future; I’ll get to that later.

Should people be interested in collaborating with you or offering their help in some way, can they contact you?

But of course they can and yes, please! I can’t do this alone. I’m open to ideas and collaboration and possibly to a sequel to this bodypainting project. Sharing the website also helps a lot, of course. The site is available in both Dutch and English. This is the link to my contact details.

The Relationship between Cortisol and Estrogen - Part 3

Cortisol, Estrogen and Leptin: Is this the Party to Whom I am Speaking?

By Maggie McCarey

Life is a system engineered with such intelligence that humankind has barely grasped at the most elementary components of the body perfect and thus has contrived only the most remedial means of healing it. Five hundred years of allopathic medicine have remained essentially the same: cut the diseased area out if you can live without it, or if you have two of them, you have one to spare. Any  “diseased” organ is fair game:  tonsils, appendix, adenoids, gallbladder, uterus, kidney, lung, connectors in the frontal lobe of the brain. Or, they have treated the area of the body that can be seen via x-ray etc. with chemicals. 

 

Only in the last few years have researchers begun to see the body as a hubbub of activity with little messengers, peptides, neurotransmitters, etc., passing information from one organ to the next—billions of messages a second.

The researchers have also discovered that marauders known as bacteria and viruses attempt to trick, duplicate and replicate the body’s messengers in order to survive, which scrambles their ability to communicate and send forth proper messages. Worse yet, researchers have discovered that marauders  change DNA forward many generations causing major disruption in the body perfect, corrupting its memory and causing it to lose its ability to remain viable.

Slowly but surely, these discoveries move allopathic medicine in a new direction.  You will read more and more that researchers are looking for signals (messengers) which are stuck, failed, being held hostage or intercepted in diagnosing and curing disease.  In the very near future, identifying the “break” in the cable and repairing it, will become the foundation of good medicine.
If about now you are visualizing the human body as the beleaguered  Enterprise on a Star Trek episode, you have come to a greater understanding of living matter and its inter-dependent connectedness: your body perfect, a macrocosm of the universe.

So from now on, we are looking for the damaged signal,  the downed messenger, or the replicated virus posing as a messenger, and we are often looking for it in a gene marker in adipose. Yes, the organ that only a few years ago was called fat and turns out to be our first line of defense against illness. For example, adipocytes  within adipose secrete various factors known to play a role in immunological responses, vascular diseases and appetite regulation. One of those factors is leptin, a peptide hormone primarily made and secreted by mature adipocytes. It has various biological activities, including effects on appetite, food intake and body weight regulation, fertility, reproduction and hematopoiesis. (Source: Niemelä et al 2008)

We have much to learn about cortisol and estrogen through leptin. It is the hormone that keeps us from starving to death, and it teams up with estrogen in the brain at the hypothalamus. There, estrogen and leptin, perform their duties together, according to Geo Q, Horvath T. of Yale University, in a chewy paper entitled: Crosstalk BetweenEstrogen and Leptin Signaling in the Hypothalamus. In short, estrogen and leptin hook up in the brain and work together to keep a body balanced between starvation and unstoppable weight gain.  Apparently, our bodies didn’t get the message.

What happens if  you don’t have a high enough leptin level?

“…originally leptin was thought to exist to prevent obesity; this turns out to be incorrect. Rather, leptin exists to prevent starvation and the fall in leptin is what coordinates most of the bad things that happen on a diet. Your metabolic rate falls, dropping T3 (thyroid hormone) , increasing cortisol, increased appetite…”

All of these processes are adaptive to the fall in leptin when you diet. Did you catch that? Diets increase cortisol?  We now have cortisol and estrogen connected to leptin in the hypothalamus. Has this journey lead us to a cause of lipedema?  Probably not, but its better information with more potential to change our situation than the doctor’s perfunctory 1000 calories sheet handed to you for decades.

Let me underscore the above quote. “Rather, leptin exists to prevent starvation and the fall in leptin is what coordinates most of the bad things that happen on a diet.” Your metabolic rate falls, dropping T3 (thyroid hormone, increasing cortisol, increased appetite…” 

When you diet, you create an imbalance that increases cortisol which I speculate messes with the intricate language shared between estrogen and leptin. You wage war against against your own army of messengers.  To make matters worse, when the stomach shrinks from dieting,  compromised leptin is met in the stomach lining by ghrelin, a peptide hormone also known as the “hunger hormone” whose job is to maintain body weight.  Leptin  avoids starvation and is supported by friend ghrelin who intensifies the feeling of hunger when you diet for any length of time. You can observe this yourself when your body refuses to yield another pound.

How many times have you and I changed the signaling process between estrogen,  leptin, and other messengers, thus calling  for increased cortisol? Apparently, the answer is: the number of times we  have dieted.  What happens after years and years of destroying communication between estrogen and leptin? We know only one thing for sure.  We have increased cortisol in our body perfect. It is now on chronic  high alert. It is starving to death, or so it believes. And it lives in a world of want and despair.

Next:

Part 4 of Cortisol and Estrogen: All about Cortisol, How it Leads to Obesity, and What You Can Do About It.

Relationship between cortisol and estrogen, part I
Relationship between cortisol and estrogen, part II

Raising awareness for lipedema – a tale with trolls & fat bias

By Tatjana van der Krabben

One time I was interviewed by a journalist of one the biggest women’s magazines in my country and had an awesome interview with her over the phone about my lipedema life. Despite the happy tone I thankfully requested insight prior to publication. Her draft said I had liposuction to fit into a size 10 again. I was also depicted as depressed, fearful and poorly informed about liposuction when I had my first surgery.

My heart sank. Our book Lipedema – Help Hope Healing had just been published and I had a request out for a (partial) tax refund on liposuction treatments, still to be evaluated. My actual stand: I chose liposuction to improve mobility and reduce pain. This journalist was undermining my credibility and reputation. It took filing a complaint with her superiors for her to admit she had twisted my words. In the end a revised and approved article appeared in the magazine. Feedback was positive. I was ‘lucky’.

As more and more ladies step forward to raise awareness for lipedema I also see more of the good and bad of (social) media. Raising awareness is awesome and valuable, but it doesn’t hurt to think beforehand how far you want to take this and what to do with the haters out there. Please excuse the negative undertone, but it’s better to be safe than sorry with today’s online aftermath of all things public.

Raising lipedema awareness & privacy

Lipedema is about the limbs, but your legs run all the way up to your groin/underwear. Images of our legs serve an educational purpose, but images don’t need to include your face per se. I made the decision to never post images of my entire legs, because I don’t want my exposed legs to be the first thing people see when they google me. This may sound a little shallow to some, but I also have a business to run that has nothing to do with lipedema. If it’s just about showing what lipedema looks like, anonymous images are just as functional. That said, we all know that showing a person behind a condition has a lot more impact than an image of an anonymous body part. If it’s a conscious decision to reveal your legs in the media or on social media, I applaud your bravery and your support for the cause.

It’s not just about the hint of nudity that can be involved. Lipedema has a profound impact on our lives or has had that impact at some point. You don’t have to disclose every little detail in interviews, blogs or campaigns. It’s o.k. to draw a line somewhere, a line that suits you.

Just remember: what goes online, remains online. Think about what you post or disclose and what could resurface even years down the line. Stay in control of the information about you online, best you can. That’s hard enough as it is.

Explore what you are signing up for

Are you super proud of your lipedema curves? Congratulations! You wouldn’t want to appear on a show where they’re conveying the message you should be miserable and are in desperate need of an intervention. Or vice versa.

It can be more subtle than that. Poorly produced (social) media campaigns can be equally problematic. This by undermining your credibility and/or reputation and inviting a lot of negative feedback, which can take away from your efforts to support the cause.

Despite the saying There is no bad press, implying all media attention can be used to your advantage, there is such a thing as bad press. Some media attention can be harmful, either for the cause or for you personally. So look into this beforehand and stay alert during interviews or the planning and production phase of projects. You don’t have to (fully) answer any and all questions or participate in anything you’re asked to join in on.

Request insight prior to publication

Where I figured 4 rounds of uncovered surgery to seek improvement for a painful condition was enough drama to interest readers, the journalist I once dealt with was of a different opinion. The problem started after the interview, where the journalist decided to fill in some blanks based on quotes other people had made online. I could never have guessed this during the interview. Editing, interpretation, an editor demanding a different angle in retrospect: it can all affect the item, either good or bad. So, if applicable, ask to see a written piece prior to publication.

Sometimes your hands are tied. TV, for instance is different. We’re not Julia Roberts and can make only so many demands. It’s also not always feasible. I once got a last minute call from a newspaper if I was willing to do a quick interview and headshot to fill a blank space on a health-themed page. In that case deadline issues got in the way, but for a magazine, for instance, the timeframe generally allows for it. If not offered the option, ask. 

Don’t feed the trolls

Trolls, haters, self-appointed gurus and experts: be prepared to find all of them to respond to your story once it goes public. They become particularly active at the first sign of (assumed) weakness or a(n implied) request for help. With lipedema, fueled mostly by fat bias, they will happily tell you what you’ve been doing wrong all along, or that you’re full of it and simply overeat. Arguing with these anonymous types or those so convinced they are right is pointless. They won’t change their minds. So my advice here is: don’t feed the trolls by engaging with them.

SEO - Boosting the right things online for the cause

Ignoring trolls is not just about being the bigger person. Not feeding the trolls is also about a little thing called ‘search engine optimization’. Search engines like Google, but also social media try to determine what the public wants to see. They release algorithms to do the math for them and determine what to show on social media timelines or what should be shown in what order in search results. Typical ways to add weight to an issue is to aim for a lot of responses and shared messages on the subject. When something goes ‘viral’, you hit the publicity jackpot and the message will spread across different media and social media platforms effortlessly. On a smaller scale these principles also apply. For instance, when you respond to or like a friend’s post on Facebook, it lingers a little longer in your newsfeed, giving more people the opportunity to reply.

This is where the trolls and the know-it-alls come in. When feeding the trolls by engaging in debate, you grow and enhance their platform. Their messages will only spread further and stay on top longer. They love that. They want you to respond, for them. If it’s toxic, leave it. It won’t help you or the cause you fight for. Then again, if you have a good thing going on social media, milk it! There’s also the good, of course.

So what to do with a good message and trolls responding to it? You can still show support and boost the message by responding to the message itself or replying to positive reactions to it. That way you still don’t feed the trolls. Lack of engagement will make them lose interest.

Raising awareness can be fun! I met some amazing people and made friends that way. Raising awareness is a slow process and it takes heaps of exposure, but we can do this. It just doesn’t hurt to look out for yourself in the process.

Low impact exercise – Aqua Lymphatic Therapy & Rebounding

By Tatjana van der Krabben

Recently an invitation landed in my inbox for a meeting called ‘Lipedema on the move’, specifically going into suitable exercise options with the opportunity to try these under supervision. The timing was impeccable. I had just cancelled my gym membership, because both going there and the training itself had become a bit of a burden. Draining, really, when I have zero energy to spare. Well, at least not to toss it out the window. But what then? I do want to exercise. What is safe? Where to begin? This clinic was an excellent starting point. Plus, many of my lipedema friends would be there. What more reasons do you need to go?!

Divided into small groups we tried Aqua Lymphatic Therapy (ALT) and rebounding on a mini trampoline. We had a lot of fun, which meant trouble for our instructors, but I think I managed to take in most for my and your benefit.

Aqua Lymphatic Therapy

ALT is very gentle. It doesn’t even come close to regular aquatic exercise. Like manual lymphatic drainage is a very gentle massage to get the lymph moving, so are these exercises very easy and slow-paced. Benefitting from the additional pressure of the water, we did exercises in comfortably warm water in which – most of us – could properly stand.

We started out with self-lymphatic drainage (SLD) and deep breathing to specifically aid lymphatic flow. After that we did very easy exercises to very relaxed music to enforce that easy pace. We walked in water, added alternately extending our arms and gently turned up the pace. The walking was paired with making a swimming motion one arm at the time, first palm down, then palm up. Little by little the pace went up. We strutted in the water, hands in our sides and circled the pool with small jumps.

The more energetic part we did with pool noodles. We used the noodles for stability and support while turning sideways, for instance. We also placed it between our legs to push ourselves higher in the water and make cycling motions (this is Holland people, we Dutch cycle everywhere) and after that horse-like jumps. Giggles all around!

Then the pace went down again. We made the water whirl around us with our hands, adding to the massaging effect of water and did more elaborate SLD. It’s quite impossible to explain this properly without showing it. A very sketchy impression: we massaged ourselves by stroking the skin from just beneath the buttock, up your side right to your armpit where we finished by making a scoop-like motion to pump the lymph. We repeated this twice and then started a little lower, mid upper leg, still from the back and then repeated the same procedure from the knee up, doing each stretch three times. We then massaged the back of our knees. We finished with a type of jumping jacks while pressing down on the groin area where the lymph nodes are. Then massaging the little dimple at the clavicles and deep breathing. That little dimple matters: it’s where all lymphatic massage begins and ends.

I must say, the total package got the lymph moving all right. For lack of time one side got more attention than the other. We all expressed our right side was feeling significantly lighter than our untreated left side. I was surprised the effect was this strong!

Rebounding

The little trampolines we used for rebounding are smooth in use because they use elastic bands for the bounce, not so much a metal coiled spring. The idea behind it is that it’s the easiest on the knees. Also important: these can support quite some weight and the elastic bands come in different strengths. The deeper the bounce (no jumping!) the bigger the effect on the lymph. This effect has recently been tested with a lymphoscintigraphy. The dye, injected between the toes, was administered twice: once prior to similar floor exercises and once more, after clearing all the residual dye from the first test by MLD, to measure again with rebounding. Judging by the path of the dye, the lymph was moving twice as fast when doing the same exercise/motions on the mini trampoline. Only one test subject, yes, but it gives you an idea.

I feared a little for my poor sense of balance, but I didn’t even need a support, just a little hand getting on and off the mini trampoline. We received instruction on the value of a nice, deep bounce, like described above, the proper posture and some basic moves. Best part: it’s not only good for you, it’s fun! I’m a sucker for exercise that is also fun. We all know that sticking with something is the hard part. The element of fun is a huge help in this.

Got a trampoline that matched my dress, uhuh!

A sturdy, quality trampoline like this is costly. I’m sold and getting one, but I’m well aware it’s not for everyone. So I was super pleased to hear NLNet, the Dutch lymphedema and lipedema foundation and the driving force behind this afternoon of exercise, will also be making YouTube clips with simple exercises you can do around the house. Accessible and safe, because the clips will be made by people with knowledge of lipedema. I will keep you posted on that development.

All in all it was a great afternoon. I met old friends and made a few new ones. For some it was the first time in years they got into a pool. It was a great idea to have this privacy and strictly be among ourselves with knowledgeable therapists. Not only that, the lymph actually started moving and I could tell the difference until well into the following day, despite driving back for over an hour after the training. I would say that this type of exercise is really worth looking into.

Do note that the primary focus of these exercises is to keep the lymph flowing and maintain body strength. This offers no promise of weight-loss. As discussed that afternoon healthy fat cells may be present in your legs, which could shrink, but there's no telling in advance whether a reduced circumference of your legs is feasible through exercise and/or a change of diet in your particular case.

Be healthy & be safe. Consult your doctor and/or therapist first if you want to make changes in your exercise regime and/or diet.

The Summer My Elm Trees Died

by Maggie McCarey

    In a few days, our summer’s end party will fill our garden and the street beyond with live music, dancing, and firelight. The friends of individual family members, forever friends and new friends, from every generation, will come together to celebrate this less than stellar season of fertility and abundance. This will  be the last year that my two elm trees will be with us for this celebration. They are dying. They have stretched over our garden, intertwined and misshapen, since we moved here 15 tears ago. They have protected four generations of my kin living below them. Known as Isis and Osiris in our neighborhood, they cleave, the branch of one supporting the other faithfully until  they have created a celtic love knot so intricate that no human could trace where one begins and the other ends. Their roots are visible 2 or 3 feet above ground, and twisted together like weaver’s filament, knotted and secure, stronger united against city life.

    Their roots bear the stripes and scars of living in a finite world. This is life. But, the horror of their passing needlessly now is the horror of my life, too. Watching them drop pale yellow leaves to the ground at the slightest touch of wind or breath is so reminiscent of lipedema pain at the slightest touch or bend of the leg. They are dying of Dutch Elm Disease (DED). DED was first named in 1910 when it ravaged the forests of Holland. It is estimated that a million elms have died in Britain alone, and there are only 8,000 left in the USA. “No cure.” My elms are dying this summer because there is no cure for DED. Drones have been invented, as have sophisticated weapons systems that can hit a village from a target on a screen, and a spaceship is being readied to explore the heavens for a new planet capable of sustaining human life.  But no aggressive plan is in place to save my elms from being toppled by a beetle in one season. 

     Lack of interest. That’s what the elm trees are dying of. Even the cause is known. When their immune system recognizes that their outer layer is breached, elms send out too much protective sap to protect their inner core. Beetles don’t actually do them in. Fungus rides in through the sap and gains entrance to the inner chambers: the root system.  Spaceships, manned by fungus, looking for a hospitable environment to ravage as long as it can survive before finding another host is what they are dying of.  And I am sick caused by lack of interest as well. That’s what my daughter, who drags her leg the way I did before I could no longer walk, is dying of. That’s what my granddaughter who has been on strenuous diets since third grade to save her from lipedema is dying of. And, that’s what my two great grandchildren, who are already allergic to the food that will be foisted upon them against our will, are also already dying of….and, of course, that’s what many generations of women have already died from. Lack of interest.

     There is good news. Some trees survive. Those who are invaded in late summer when dormancy protects them from starving to death can live. Not all of you will lose your mobility. Some of you will lumber and some of you will dance to the finish line.  Better news would be a systemic approach to curing DED (and lipedema). No finish line.  Best news would be  the appearance of a metaphor so illuminating that trees and women would have their rightful place in the world’s esteem.

        Yesterday was my birthday.  Instead of a new outfit on my special day, I bought a “festive”  transport mobility chair so that my family would be less encumbered by my illness at the Saratoga races among thousands of people on foot.  Ah, the fallen matriarch.  How I fight the demons to create lasting memories with my tribe. I walked so tall and covered my insecurities with a head held high, big legs and all, as long as I could walk.  Now, I face them without the comfort of illusion, others or mine.  

     My daughter, Stefanie’s legacy to the world is sheltering lost and unwanted children beneath her wing. She brought Estelle into our family last year. Estelle and I have the same  birthday so I shared mine with her.  Her first horse race was at the fence, and she won big every race! She stopped in to see me today. At one point, Estelle said, “This was the best birthday of my life.”

    I said, “It was one of my worst. It is difficult to be the one in the wheel chair. ” (Ignore my leaves falling pale and yellow around my body.)

     “Are you kidding, Grams? You just pulled yourself right up from the fence and stood for every race with the rest of us.  That’s what I will always remember about you yesterday. That’s what I am going to do, too, when I am old.”  Ha, there it was, that wonderful inevitable ray of light.  I still have value as do my elms who might be giving us clues to how we need to slow down lipedema. The circle of life trumped lipedema. I and my trees still have value and purpose regardless of our circumstances.  Next Saturday, when people celebrate summer, the elms and I will be among them, blessed in this season to have one last summer together.

     A footnote: I read this blog to my husband last night and it gave him the freedom to talk about how bothered he was by the chair at Saratoga, a conversation he would never have initiated. He said: I am so used to you being by my side, I missed you. “But,“I have figured out a solution.  The next time we go to Saratoga, I am going to ride in a wheel chair next to you.”

     I snickered. “Who is going to push you?”

     He waved my comment away. “I don’t care how it happens. We will hire someone. But that’s how it's going down.”
 

                   Isis and Osiris

The thing with lipedema diets

By Tatjana van der Krabben

Recently I read a blog by The Well-Rounded Mama with a very accessible overview of lipedema symptoms. Something in her introduction resounded with me:

"However, when I have tried to research the condition, I've been turned off by many lipedema websites. Some pay lip service to being size-friendly but when you dig deeper, there is a whole lot of food neuroses and weight-loss rhetoric" – The Well-Rounded Mama

She was referring to websites, but truthfully you see this in support groups as well. We say you can’t diet it off and then talk about diet, recommend diet, compare diets. What is that?

We are all size-conscious

Society demands we are size-conscious. We were raised to be. Our doctors insist we are, because supposedly our size defines our health. Selected role models on TV and in films and magazines rub it in. Clothes stores pick sides and stock for either the slim or the plus-size, hardly ever for both. Even when they do, they direct you to separate floors.

You’re in or you’re out. And if you’re out, you can always conform by losing weight: this is popular belief and sadly, it doesn’t apply to reality. Not to lipedema, not to lymphedema, not to slow metabolism and…and…and… Not to mention the fact women are still largely being judged on looks. We evaluate what female role models outside the beauty industry wear or their new haircut – like that really matters or as if we would scrutinize the looks of their male counterparts like that.

Is talk of diet wrong?

Not all diet (talk) is bad, I think. Because although we tend to link the word ‘diet’ to ‘weight loss’, there’s more to it.
This is what the dictionary has to say on the subject (source: thefreedictionary.com):

diet   (dī′ĭt)

n.

1.  The usual food and drink of a person or animal.

2.  A regulated selection of foods, as for medical reasons or cosmetic weight loss.

3.  Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.

‘The usual food and drink of a person’. That doesn’t sound so bad. We all got to eat, and drink for that matter.
‘A regulated selection of foods, as for medical reasons’. This could be us. This is how I see ‘diet’. Not some thing you deal with for a couple of weeks or months in attempt to reach some goal and leave it, but rather a lifestyle.

Managing lipedema through diet

‘A regulated selection of foods, as for medical reasons’. I see lipedema diet as something like a diet for diabetes or a slow working thyroid. It’s not like you can cure diabetes by following a diet or fix that thyroid, but it does help you manage the condition.

Manage, how? Through Lipese we get a lot of questions regarding diet and specifically what to eat to lose that dreaded lipedema fat. We always answer the same: change your diet and you won’t lose weight per se. With an underlying medical condition that affects your weight it definitely won’t be easy and perhaps it won’t happen at all. This is a disappointing message and not easy to convey, but this is where we currently are with lipedema treatment.

Is there still a point to it, then? What else would there be to ‘manage’? There’s mobility and strength. You can’t exercise and build muscle without proper nutrition. Trying to stop gaining can be a thing. Also very valid: pain management. By attempting to reduce inflammation, you could be able to reduce pain and become less prone to swelling.

Perhaps, trying, attempting, could: we’re all reaching. Preferably for the stars. But it’s far from easy. It requires getting to know your body and figuring out a diet plan that is right for YOU. For some stupid reason (venting some personal frustration here) we can’t make a list of do’s and don’ts we could ALL benefit from. Sadly, with lipedema it doesn’t work like with diabetes, where you can measure a concrete value and adjust accordingly then and there (that’s a bit simplified, of course). Yes, (contradicting) food lists do exist for lipedema, but it doesn’t work for all. Also, there is no research regarding diet or metabolism in lipedema.

Guess what happens next? We swap…dietary theories and suggestions.

Just as long it comes from a good heart and a healthy curiosity, I personally don’t see the harm. Have you found something that works for you? Congratulations! But be aware that the key to your success is yours and doesn’t necessarily work for others. Share & care. We are all in this lipedema boat together.