Lipedema got a ICD-10 code!

By Tatjana van der Krabben

ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases. (Source: Wikipedia)

Lipedema was not part of this lengthy list. Over the years this issue came up now and then. Health insurances refused to cover certain treatments ‘because lipedema didn’t have an ICD-10 code and the applied code was inappropriate’. Some doctors refused to acknowledge the existence of lipedema ‘because it’s not acknowledged by the WHO and has no ICD-10 code’. It’s the Schrödinger’s cat of the medical world. Until a condition makes that list, you do not ‘know’ if it’s there or not.

Well, peekaboo, come 1-1-2017 lipedema will get this ultimate bureaucratic piece of evidence of its existence. There'll be separate codes per stage and a general, unspecified category, all placed under the general category of 'Lipomatosis' (ICD-10 code E88.2). The codes for lipedema will be:

Lipedema stage 1: E88.21
Lipedema stage2: E88.22
Lipedema stage 3: E88.23
Lipedema, other: E88.24

I threw in a little fist action, with a big YAS! when I heard about it last night, but I’m not throwing a parade just yet. It’s a start. It’s leverage. But it won’t make a difference over night.

But this is where it subtly can start working our way:

·        With the code you have a better starting position in any debate on treatment with your doctor. Because it’s proven and for real by your doctor’s standards. Try dodging that.

·        With the code you have a better starting point in debates with your health insurance. Again: proven is real and that makes it harder to ignore us.

·       With a code lipedema may become a less controversial research field. Making it more attractive to research or even make it actually possible for good willing researchers to defend a research proposition regarding lipedema to their peers, backers etc.

·       With a code negotiating coverage of effective treatment will becomes easier.

In the longer run it could mean more research, a chance at better treatment and covered care.

This piece of news was communicated via Germany, but as it’s an international list by the World Health Organization, it’s safe to get a little excited.  

Update: We were holding our breath to see what this recognition via Germany in the from of ICD-10 codes would mean for other countries. From people from the US we understand that updates are not accepted automatically. This will take more time, unfortunately. We're not entirely surprised. As changes impact healthcare and insurance it's not hard to understand that countries have seperate procedures. Understandable, but frustrating.

Fatigue is my enemy

By Tatjana van der Krabben

For me personally fatigue is the cruelest lipedema symptom of them all. I can push through pain, happily fool myself into believing my legs and arms aren’t all that large (imagine the surprise when I went up a size), but the fatigue is always there. Two bad nights in a row? I’ll have to run on coffee for three days. A trip to New York City and walking 6-7 miles a couple of days in a row? I honestly look like I pulled an all-nighter.

Taking and having a moment at the New York library

 

It’s the stuff that drives me up the wall, the stuff I can’t fix. It got a lot better after liposuction and by upping vitamin B12, but I still don’t come close to the energy levels of a healthy person. It’s never enough, really. I’m full of ideas. There’s so much I want to do and all I constantly seem to do is weighing pros and cons, subtracting the estimated amount of energy per activity of the estimated total. I had to drop things along the way or conclude afterwards that a repeat of an activity may not be wise, even though I had a wonderful time. I can’t stand it.

Gem of a beach, the Algarve, Portugal - roughly 200 steps to reach it

Give me spoons*! I want to scream at the universe. Give me spoons to live my life, be there for my kids the way I would like to be there for them, to see more of the world, build my business, to help my ageing mother and actually have a social life.

It’s a little worse in fall and winter. I’m currently adjusting. Again. But I’m not motivated, because I don’t want to adjust. I just want to go about my routines as if it were spring or summer. Minimum. I would be better off going with the flow and deal with the facts, but right now I’m too busy being angry. I’ll learn. Again. And I will adjust. Again. Just not today.

*Spoon theory

Shared decision making & patient empowerment

By Tatjana van der Krabben

Names and figures are lacking here and there, which I didn’t get around to copying that day. However, this doesn’t affect the thought behind this blog. Also, the opinions and goals expressed at the congress stem from the Dutch healthcare system with mandatory health insurance and significant coverage as it is, compared to countries like the U.S.A. Therefore, I aim to limit myself to mechanisms and thought processes that translate more widely.

It takes 2 to tango, Duet between patient and care provider, congress by NLNet
Image by NLNet

Saturday I attended a congress on lipedema and lymphedema by NLNet, Dutch foundation for lymphedema and lipedema patients. About 200 people attended, both patients and therapists, as well as a few specialists. However, this time I can’t offer you the habitual overview of new research and insights. The theme was entirely different: It takes two to tango – debates between patients, care providers and health insurance regarding patient care. More specifically: (the feasibility of) shared decision making, a situation where the care provider and patient go over treatment options together and reach a joined decision on the course of action to be taken.

Self-management of chronic conditions

The outline of today’s healthcare for chronic patients is that the main focus of care is on clinical healthcare and only a small portion is reserved for self-management: an upside down pyramid. The aim is to topple the pyramid for chronic patients and make healthcare more so about self-management.

After that statement there was some uneasy shifting in chairs and sharp whispering, because we can all see the danger in that: being sent home with a few tips and tricks, being told to do your best and that would be that. Essentially what we already have when it comes to lipedema. But the speaker clarified that should also imply the majority of funds would also go toward facilitating self-management. Now we’re talking.

The need to shift more toward self-management makes sense to me. Healthcare in hospitals and clinics is largely cookie cutter healthcare targeted at immediate issues and has only so much room to provide individual, long term care. Also, as research shows more and more, a lot of issues can’t be fixed with a pill, a shot or surgery. A lot of it is about exercise, diet, adapting. Things you can and need to address in everyday life.

Shared decision making in health care

Ideally, the care provider and the patient would both go over the different treatment options. The patient would give feedback. Together they would decide on a treatment plan. The thought behind this is that patients feel more content with the outcome and are more inclined to stick with the prescribed therapy as intended when they feel heard and were given the opportunity to voice their own views and experiences.

Reality is a very unpleasant lady

Mind you, to prove the use of shared decision making, research in the context of treating lower back pain was presented. See where I’m going with this? Charted conditions with multiple treatment options are ideal for shared decision making in healthcare. Lipedema is neither fully charted, nor are there multiple treatment options. Well, there are, albeit not comprehensive, but they are not offered everywhere, let alone widely known and covered.

Like many from the audience brought forward there’s another complication. You need empowered patients. When the patient is still in the learning stages, just after diagnosis, it’s a lot to ask of them to provide input on the best course of treatment for them. You also need doctors willing to listen. Not only listen, but also willing to present you with the best treatment options, not push something on their patient. Oh, and time. How often do we feel rushed through our consultations?

Many patients indicated that they felt that a suggested treatment was not always in their best interest. The speaker in question was a little shocked. She saw these reservations in terms of greed and such unethical issues. That was too big a leap if you ask me. I mostly see a more subtle process influencing the outcome of your consultation.
When you see ‘a’ dermatologist, for instance, that dermatologist has certain specialties. Can’t be avoided. Nobody can be trained for everything, even in a relatively limited area of expertise. That and the facilities that clinic may or may not have will  influence the treatment options offered. He or she may have just been trained with a nifty new procedure they think highly of and you happen to walk into the office while he/she is aching to stumble upon a good candidate. He/she offers the treatment. Had you walked into that office a month ago he/she wouldn’t have. Is that bad? Not per se, but things are not that independent as implied. We’re all people, bringing our individual views, training and experiences into the room. This applies to both care providers and patients. The less charted the condition, the trickier this ‘dance’ gets.
I also think patients raising the issue of not getting the best possible care hinted at liposuction. The Dutch lipedema guidelines present it as a last resort type of option. It’s covered only in very few, extremely well documented and severe cases, and only when prescribed by a handful of specialists in the country. Patient perception often is that they’re aware of this treatment option, feel like crap and are convinced that their prognosis with liposuction is much better. Yet, it’s not being offered to them. Not quite the same dilemma as the lower back pain case shown in a video where the options physical therapy and massage therapy were debated, but where the predicted outcome would be pain relief either way.

Evidence based care and Patient Reported Outcome Measurement

The liposuction dilemma led us straight into a new fiery dance: not evidence based. Not yet. Not even manual lymphatic drainage is considered an evidence based treatment! As it turns out the therapists’ best efforts and practical attitude to accommodate us with tailored treatment makes it challenging to quantify what they do. You can’t add up or compare apples and oranges.

Research is key. Here we go again, but the speaker on behalf of the health insurance companies did offer another option: Patient Reported Outcome Measurement (PROM). PROM type of research is about the patient’s experience with a treatment. They evaluate and score the effects. Now, before you bring out your personal spreadsheets, like I know many of you have, this does need to be formalized to make it count. Or else it’s apples and oranges all over again. What happens when you need to formalize stuff? Exactly, our DIY measurements suddenly cost money to make it happen. One of those ‘oh…’ moments. However, the speaker did see room for patient organizations to make this happen. Patient organizations generally move faster than formal bodies and institutions. Also, patient organizations are trained to make things happen on a budget. PROM as a method to gather data on treatment outcomes could definitely be thing.

A doctor’s two cents

That leaves the good doctor. There’s some nuance here, too. Like explained, the doctor can be enthusiastic about a treatment all he wants, if it’s not evidence based, his/her hands are pretty much tied. Like with liposuction in the Netherlands: permission has been given to specific specialists to do a small scale experiment. Those treatments are covered. The experiment status is the loophole here, but only for a very limited number of patients.

I also loved this quote by a doctor: "Clinical experience does not lead to improved communication."

This doctor, not present, only quoted, argues doctors need training when it comes to communication, if we want to move toward shared decision making. A specialist present brought in that we should speak up, not feel intimidated. “We don’t bite”, he said. “It’s not the patients that give me a burn out; it’s the rules, regulations and paperwork.”

This sort of thing is good to hear. The gap between patient and care provider if often not as big as we perceive it to be. Don’t dismiss your doctor before you’ve even invited him to the dancefloor.

What I got out of this day

Research matters. It’s a bit of a pet peeve of mine that a big chunk of the lipedema research is about treatment, while we don’t even know exactly what lipedema is, what causes it and what causes it to progresses. That’s like playing darts blindfolded. However, we need that type of research to get treatments covered or even to have doctors willing and able to prescribe the treatments. We can’t go without any and all treatment until we finally figure out what it is. I see that now. But to sum things up: research. We need more research. We qualify as a ‘small domain’, according to health insurance companies and all those with influence in this debate. We’re not a small domain at all, but, again, we need research to even prove that. 

Research, research, research, or we’re screwed for another generation. Could PROM be a fix for that massive gap we need to bridge? Well, it’s an opening. Until then I largely see shared decision making as a lovely ideal. Because with few evidence based options there’s little to share, let alone to decide. Oh, wait, hold on, more support for self-management for chronic patients is music to my ears. For sure!

10 things I Iearned since my lipedema diagnosis

By Tatjana van der Krabben

1.     Weight is not about calories in and calories out
This was a relief. Society may not get this, a lot of doctors may not get this yet, but I finally had it confirmed I wasn’t crazy or imagining things. Can you believe those yahoos actually had me consider the possibility that I was eating while sleep walking?!

2.     Calculating my BMI is a waste of time
BMI says exactly, well, nothing. It’s being discarded as a suitable tool for an ever longer list of exceptions, ranging from muscular people, to Asians, and from very short people to really tall people. They didn’t get the memo yet that it doesn’t apply to those with lipedema or lymphedema either. No doubt we would still miss more that shouldn’t be hassled with a 4^th grade math formula to define health. May I suggest we give up on using this for everyone else as well? It just isn’t serving the intended purpose.

3.     People call wearing compression ‘brave’
That would be because of their poor image, no doubt. Yes, most compression garments are ugly and a pure anti-fashion statement, but not necessarily. Eventually you get really clever with your choice of clothing and some compression wear actually looks nice. The rest is attitude. A lot of people, if not most, don’t notice the bit of compression sticking out from under my calve-length dresses. I seriously hated starting with compression, but I must say, when you benefit from them, that really changes your perspective.
When measured they commonly get you started with something hideous. Do ask what else they can offer.

4.      I do not like plus-size stores

        Eventually I needed to shop at plus-size stores for the better part, but they mostly offer clothes for apple-shaped ladies, not so much the pear-shaped ones. They also offer a lot of things that are less than flattering, or designs without lining or made with thin fabric that accentuate everything you don’t want highlighted. Despite these rather obvious misses, most plus-size fashion is way more costly than clothes in the smaller sizes. I hate to say it, but I’m not impressed with most plus-size collections.
It’s a sore point. I really miss being able to dress the way I used to, and the amount of time and effort I need to put into finding something I like is not helping! On a positive note: the staff in plus-size stores is usually super nice and helpful.

5.     The words ‘chronic illness’ are a conversation stopper
Don’t say I told you this, but if you ever need to get out of a boring conversation…

6.     ‘Managing your lipedema’ is mainly effort with an unpredictable outcome
Lipedema messes with you. What is part of your lipedema and what isn’t, what is a realistic prognosis, how much result can be expected? We just don’t know. Different people respond differently to the various types of recommended therapy. And for those of you who secretly - or not so secretly - think that those who say something doesn’t work for them don’t try hard enough, I have a little example that has nothing to do with following regimes, but everything with the involuntary response of our bodies to the lipedema.

Estrogen is believed to be a factor in lipedema symptoms. Take pregnancies. Some gain and swell, until they look like the Michelin man. Others remain stable, and others even lose weight: 10, 20, 30 or even 60 pounds. They just do. Therapy is the same. Some drop weight with a new approach, others remain stable and there’s also a group who will feel like crap and/or gain on your ‘successful regime’.

Based on today’s knowledge I would have to say that lipedema is unpredictable. Maybe we’re currently labelling 3 different things as ‘lipedema’ or will eventually identify subtypes. The whole medical perspective is still so wide open, that could easily happen. For now all I can say is that there’s no one regime that does the trick for all.

7.     Liposuction is not taking the easy route
It’s surgery. Surgery is never easy. Recovery isn’t exactly effortless or pain-free. It doesn’t cure lipedema either, which means your days of putting in effort to manage the lipedema are not behind you. So, no, it’s not the easy route. It can be a faster and/or more successful route to results. The obtained relief will make it easier to put in the required effort. That’s really nice, but doesn’t qualify as ‘easy’, I think.

8.     Good exercise is not about ‘feeling the burn’ or ‘no pain, no gain’
I was so happy to learn this. Just because I couldn’t do my old routines anymore didn’t mean I was out of options. I just needed a different perspective and stop abusing my body and putting it through routines that only cost me energy and worsened the pain.

9.     My best sources of information are Google, sharing among patients and DIY

This happens to anyone with a rare, or in our case rarely diagnosed and little known condition. Doctors really, really, really don’t like to hear this and strongly urge us to stop doing that. However, as lipedema is still largely being treated and described based on (varying) hypotheses, we simply have a gap or two (three, four…) in figuring out routines and best practices. Doc, if you don’t like me doing this, I get it, but then you’ll need to give me a protocol that covers all day to day issues with proven, accessible, which also means affordable or (partially) covered, options. Until then…

10.  Chronic illness changes your world
After putting others first for years, I was forced to put my own needs first. Talk about rattling the cage! l prioritized differently, lost friends who didn’t (want to) get it and get called lazy and/or selfish (behind my back). l also made new friends and eventually didn’t look upon my changed routines with a sense of loss, but a feeling of accomplishment. Yes, dear ladies, it’s pretty ballsy to swim upstream and stick with it. Chronic illness is not for the fainthearted!

When the mental struggle with lipedema fails…

By Tatjana van der Krabben

Yesterday the hairdresser came to my house. There was my mother and the kids, and we did our Steel Magnolias-thing in my kitchen. Over the years, like a broken record, I’ve been sharing about lipedema and our hairdresser is now well informed. So when she picks up news regarding, she shares. We really needed to brace ourselves for what she had to tell yesterday.

A 20 year old girl in her town committed suicide because she couldn’t cope with living with lipedema anymore.

I don’t know her, but that doesn’t matter. These things get under your skin instantly. It’s incredibly sad.   

Over the years I found it hard to write about the mental struggle with lipedema. In part because I’m a silver lining kind of gal, in part because the thought of a silver lining keeps me going like a hamster in a hamster wheel, and in part because a focus on the mental struggle tends to only feed bias. Bias that lipedema is largely about appearance and how we feel about that. That bothers me, even though that aspect is real and valid.

When Joanna Dudek (SWPS University of Social Sciences and Humanities, Warsaw, Poland) came forward with her research on the psychological aspects of living with lipedema, a lot of us sucked air in between our teeth. It’s not like it wasn’t valid what she had to say, or not sciencey enough, or whatever. It was the focus on mental health. Lipedema sucks. I think we can all agree to that, but many of us fear this type of research and reasoning pushes toward the already very popular angle of teaching us coping mechanisms and providing us with symptom relief strategies, instead of trying to come up with answers and treatment options for the underlying issue: the lipedema. But the news I got yesterday does put things into perspective again, and knocked me right off my soap box.

The pressure of being unable to sculpt your appearance according to what society perceives as ‘pretty’, ‘attractive’ and ‘healthy’, while being told again and again that you can and should work on your appearance, is immense. We get to be labeled lazy, overeating, ugly, fat, lying etc. We get labeled by medical professionals, friends, family and complete strangers. And then a sweet 20 year old girl, fresh out of school, just starting her own business, with her whole life ahead of her, cracks. The hard way. The irreversible way. I can only imagine how she must have suffered until she couldn’t take any more. This sucks.

Dear doctor, can I make a wish?

By Tatjana van der Krabben

It’s June. That means it’s Lipedema Awareness Month. For me that’s a time to see how far we’ve come and where we still need to get to. I’m greedy and needy, I know. I want research, the kind that helps us learn about what lipedema exactly is. I want more informed doctors, a better prognosis for patients, early detection all around, more effective treatment options and better access to treatments.
I know that takes time, so that would be mostly for the next generation, but I’ll take it. I want better coverage for treatments by health insurance companies, too. Because, frankly, this unproven thing is getting kinda old. And so is that assumption that it’s about cosmetic issues. We’re not that far back in the lipedema dark ages anymore. Seriously, read up, people. And while I’m at: treating us with lymphedema and obesity protocols should equally be abandoned as a thing of the lipedema dark ages. Come on, give me a little renaissance here, doc.

But for all of that to happen I would need to make another wish, dear doctor. I feel it’s essential. So may I squeeze in one more request? Say what? I’ll take that as a yes, if you don’t mind.

Lip means fat and edema means fluid. I know every condition needs to get a name and this is what we got. But that shouldn’t mean we can’t look beyond the semantics of this thing, right? Because despite the fact more symptoms have been brought forward and get a mention here and there in case-based literature, most attention still goes to either the fat or the edema we carry around. We even have doctors specializing in treating the one or the other, even though we deal with both symptoms at the same time. And some.

Lipedema has more symptoms that get frightfully little attention. I can’t give you a list, because there is no acknowledged comprehensive list. There is no consensus on which suggested symptoms exactly are part of lipedema and which are not. Isn’t that a little weird 70+ years after acknowledging the existence of lipedema? Come again? I’ll take that one as a yes, too.

We need this consensus. Badly. When only a handful of specialists are aware muscle weakness is a thing with lipedema and bother to look into reactivating the patient safely, most of us strike out. Leaving us either with taking this symptom for granted or forcing us to work on remobilization without professional care and input.
Our worn knees don’t get replaced or treated otherwise, ‘because we’re too young’ or ‘too fat’, completely ignoring the lipedema component in the process and the fact that they are condemning us to further loss of mobility with this verdict.
I’ve seen specialists argue low levels or malabsorption of certain vitamins and minerals is a typical lipedema-thing we should get checked out after diagnosis and other specialists calling it pretty much a myth and the occurrences of malabsorption among patients a coincidence.
I’ve heard specialists argue we should stay clear of birth control with hormones or hormone replacement therapy as it would aggravate lipedema, and others, when asked, saying that’s not proven nor did they ever notice anything like that in their patients.

These are only some of the dilemma’s and hurdles we face. We’re talking quality of life here. Some grip on our prognosis. A chance of a better prognosis, if we manage to get things right, best as possible. Do what is right for our lipedema and, yes please, do it with proper, covered medical help, instead of DIY’ing ourselves through this. That all starts with a better understanding of lipedema, and trust me, that goes a whole lot further than ‘fat’ and ‘fluid’. True: you can’t whip up valid and substantial research. I understand, but there IS data to give you a head start. How about that.

So can I ask you something, dear doctor? Just have a look at the results of the surveys that patient organizations have compiled and spread among their members. There’s a goldmine worth of information and leads there. Just waiting to be used, researched and, if applicable, acknowledged.

There have been surveys by Lipoedema UK and the LIPV (partly in Dutch), among other.

Come on, doctor, make my month.

Starving yourself is not the answer

By Tatjana van der Krabben

Starving yourself, starvation, fasting: these words seem to pop up everywhere these days in relation to lipedema. And not just with respect to lipedema. There’s talk of ‘starving tumors’, resetting and/or cleansing your body by fasting, skipping meals like a caveman etc. The emphasis is shifting to what is not ingested, instead of what you should or could ingest. Before you know it the (presumed) science behind these tools is translated into numbers of calories and ways to cut calories, as we are all drilled with the low-calorie myth.

With doctors still (!) recommending gastric surgery for lipedema, the fad of the hCG diet which was paired with extremely low calorie food plans, the popularity of juice detox-fasting and the presumed beneficial effects of (intermitted) fasting, the extreme low calorie theories as somehow being beneficial for lipedema after all keep creeping into conversation. I don’t buy that. Plus, this line of reasoning is creeping me out. It creeps me out because it’s a slippery slope: if you don’t lose weight at, say, 1500 calories a day, they drop the recommendation to 1200, then 1000. Where does it end? With hCG they dropped to 600 calories. That’s incredibly low, to put it mildly. Just because we need to fit the calories in and calories out myth.

Weight-loss is not simply about calories in and calories out. Yes, a lot of doctors still say that, but that’s because they didn’t keep up with research on this topic since medical school. A frustrating example in my own household: my son has to eat like crazy just to maintain a healthy weight, my husband was the same and can still eat an insane amount of calories without showing it, but my daughter and I have to really watch what we eat. There is no general standard in metabolism which you can quantify with a number of calories per day, even though this is being done anyway. We simply are all different and don’t process food alike.

On top of that, lipedema is not caused by overeating. It can be aggravated by overeating, but that’s another story. As lipedema is not caused by overeating, it seems farfetched that eating (extremely) little could fix it. I know many of you are familiar with the images of women with anorexia, who still displayed clear signs of lipedema. Sadly, these women prove that point.

Starving yourself is not the answer. Food is not the enemy. Good food provides nutrients, the stuff that keeps you strong and healthy. You can’t build muscles on air. You can’t maintain strong bones and teeth, and have enough energy to face your day by limiting yourself to a few mouths-full of food day in day out. Food is sustenance.

Moreover, lipedema appears to coincide with deficiencies in essential vitamins and minerals. Vitamin B12 and D deficiency is notorious among lipedema patients, as low levels further undermine energy levels. Some say it’s because we already tend to eat too little as it is. Others speculate it’s something in our metabolism. I don’t know what it is, as lipedema metabolism has never been studied. I only know that if you’re already prone to deficiencies it’s not particularly helpful to deprive yourself of sufficient quantities of foods containing essential vitamins and minerals.

There’s no nice way to put it. Lipedema in itself already can already affect quality of life. Deficiencies only make you feel worse. It’s a sign your body doesn’t get enough of what it needs to keep the system running smoothly. It’s not just a matter of discomfort: deprivation leads to health problems and in the long run to permanent health damage.

I know many of us have to use supplements or get for instance B12 shots to compensate regardless, but access to supplements cannot justify deprivation. My two cents: even if modest (!) fasting or throwing in a liquids-only day is said to be beneficial, it should be nothing but a tool in the bigger picture, never a goal in itself.

I have a beach body, just like everybody else

By Tatjana van der Krabben

In about a month me and my bits and bumps are hitting the beach again. In a tankini, without additional cover ups. That is neither good nor bad. Neither brave nor a display of lack of style. It just is the way I prefer to be on the beach. A minimum of wet fabric sticking to me. Feeling the breeze on my skin.  

I’ve done the pareos and the tunics in the past. It started that first vacation after discovering I had lipedema and still had to come to terms with the fact that, in my case, it was no such thing as ‘baby weight’ which could still be melted off somehow. Also, someone was kind enough to whisper into my ear that I should really look into cover up options (not my spouse!). It landed on fertile soil, being terribly insecure and frustrated because of my altered mirror image.

That trip I brought two tunics and two pareos. In the end I wore them only a few times. Towards the end of the trip I would only slip something on when someone wanted to take my picture. Otherwise I found the cover up strategy a waste of time and energy. It was hot. It didn’t fix that awkward moment when you need to take it off to swim and walk to the water in nothing but a bathing costume. You could decide to keep all sorts of clothing items on in the water, but I found it uncomfortable. Especially when exiting the water and having all that heavy, wet fabric sticking to me. The moment I realized I was crossing the beach several times a day with exposed legs, just to get in and out of the water, I really couldn’t be bothered anymore.

That was me being practical. I was still fussing and constantly checking what angle I displayed the least cellulite. Along came this fab local lady, at least 4 sizes bigger than me, rocking a pair of hot pants on the beach. She was having fun. She was not only confident, she was in her element. That was the last drop. To me, she was doing something right and I was definitely doing something wrong. I let go of most of the stress and self-consciousness right then and there.

I can really enjoy the moment now, even in a bathing suit, completely forgetting what I look like. In my mind I’m thinner anyway. That bubble bursts quite violently when I see myself back in pictures, of course. That’s still an issue. I still haven’t found a way around that, or rather how to push through that, even though a decade has passed since my diagnosis.

There’s also always that awkward first vacation day. That’s when I’m really self-conscious. Every single time I need to take the hurdle big time on the first day. The second day is better and by the third day I’m good. It’s my vacation, too. I’m entitled to enjoy myself just as much as the next person.

I love the ocean. I walk around the beach with the lines of my snorkeling mask pressed into my face and a dumb grin. Or I sift through the sand looking for shells or fossils. Let’s not forget swimming. It’s the one place where moving doesn’t hurt, my weight doesn’t hinder me and where I can move freely. If I swim al lot, I can get away with not wearing compression during the day, even when it’s hot.

The ocean makes me feel free. To the point I actually feel comfortable to engage in small talk with complete strangers. There’s no judgement. The snorkeling gear is leading, tall tales you can tell about what you saw in the water, there or elsewhere, and the fun and excitement that comes with that. Or comparing finds on a fossil-ridden beach. Just as long as I’m experiencing that beach-vibe, everything is easier, even though my legs and arms are on display. Not to mention that I tan in three different shades: not (legs, upper arms), slightly (face and lower arms) and a lot (neck and back).

A lot of it is attitude, positive energy and making up your own style rules. Unfortunately, so far my portable comfort zone only deploys on vacation. It would be nice to find a way to take that vacation vibe and mental freedom home with me, to enjoy it 365 days a year. I’ve still not found an answer to that, but I stand by it: I have a beach body, just like everybody else. All it takes it taking your body to the beach, and voilà.

Unsollicited lifestyle advice is harmful

By Tatjana van der Krabben

Unsollicited lifestyle advice – When you completely miss the fact that we were not sitting here idle, waiting for you to step forward with your insights.

Many not only miss this point, they hop straight to the guilt trip. We are supposed to feel bad, dislike ourselves and be more than ready to try the latest fad in diet or exercise. We are expected to jump to the opportunity no matter what the suggestion. As if it were a golden ticket to Willy Wonka’s Chocolate Factory presented by Mr. Wonka himself.

Chocolate… Where was I again?

Exactly. This is what too many people actually think. That I have (junk)food on my mind 24/7. That I haven’t seen the inside of a gym since the previous century. Neither is true. It’s unpleasant, to say the least, to watch a conversation skid and to find myself defending lifestyle choices and explaining again and again why I look the way I do. I shouldn’t have to. Not only that, it’s as pointless as explaining why my eyes are green and my feet are small. I simply have lipedema. It’s part of me – like it or not.

The truth is that we are the new smokers. Society thinks it’s okay to lecture us out of the blue. We not only deal with lipedema, but also with the ruling false assumption that body weight is all about calories in and calories out. It makes us automatically to blame for excess body fat, hence the mandatory guilt trip. It’s an unfair assessment which is unhelpful at best for those who are struggling to accept the way they look. By projecting their own (temporary?) excitement over a particular work out regime or diet they are much like a bull in a china shop, doing more damage than good. Maybe they mean well, but I will never be the one to drop 2-3 pounds a weeks, let alone several weeks in a row. Insisting they know a way around that is insulting. It implies I haven’t tried hard enough. And the saddest part? In their efforts to impose certain lifestyle choices I mostly recognize their own obsessions and frustrations regarding their body image being projected on me. Or a chance to shine with assumed moral superiority, which frankly is despicable.

It’s not only annoying. Much of the advice I get is plain wrong for me and anything but medically sound. It’s unbelievable that people are able to think they’re qualified to give lifestyle advice to a chronic patient, regardless the condition, based on something they read in a glossy magazine or seen on a sponsored TV show. If our doctors did that, there would be consequences for sure!

The insensitivity when it comes to the fat is mind blowing. So many people with lipedema (or obesity) suffer from depression, low self-esteem, a negative self-image and/or eating disorders. Yet, we are confirmed in our feelings: they’re labelled ‘appropriate’ for our current state and are meant to encourage us into a healthier lifestyle. By sending the message the plus-sized are not worthy is plain cruel. Change is not always on the table. Sometimes because of an underlying medical condition, sometimes because someone simply isn’t ready to take on the challenge and sometimes – tada – because they’re happy just the way they are.

Size is such a limited perspective. It doesn’t even define healthy living. Just look at Witney Way Thore from My Big Fat Fabulous Life: definitely plus-sized due to chronic illness, but also super fit and living a healthy lifestyle. I know some of us desperately try to prove we didn’t bring lipedema onto ourselves and claim we only eat very little, if not starve ourselves. I feel we shouldn’t have to defend ourselves. The fact that some of us are essentially starving themselves is horrible! Is that what it takes to ‘prove’ we give it our all?! That’s crazy! We should drop the apologetic attitude. We don’t need to accommodate their ignorance and justify fact. I’m done with that. This is how I feel these days:

Unless you’re a doctor with knowledge of lipedema, walk a mile in my shoes first, or zip it.

The Theory of Opposing Processes in Illness and Healing

Maggie and Joe McCarey-Korkin

The Underlying Mechanism of Alternative Healing

Non-traditional healing methodologies, referred to as alternative healing, are now grudgingly acknowledged as providing varying degrees of benefit for a broad spectrum of physical illness. However, the non-invasive and nonvisual nature of these healing techniques gives scoffers the means to debunk their powerful underlying healing mechanisms and modes of therapeutic action.

These challenges are fueled both by religious and medical pedagogies based in tradition and domination rather than in testable explanations and predictions about the universe, or as it is known, science. To begin with, the medieval church gained control of medicine by hanging or burning anyone who practiced medicine outside its control. Using the populace’s archetypal fear of witches and medicine men, the church convinced people that such healing came from the devil, especially if the patient survived. Archetypes never die. To this day, alternative healing has been dismissed, at worst as witchcraft, and at best, as “alternative.”

Consequently, alternative healing modalities are still thought to be ignorant, dangerous, and parochial: hocus locus, based in pagan spirituality, rather than in science. This view is still believed and promoted by the medical community, including insurance companies, and law makers who disallow the efficacy of any healing method outside its control. And for good reason. There is no profit in alternative healing. which is found in the hands of all who accept that human beings are born with an ability to give and receive healing energy from each other. To challenge this innate power is to challenge the texts from which you derive your understanding of God’s nature, but the tightly managed fear of others, keeps the world afraid of gospel medicine.

We hope with this research to refute and debunk the AMA’s tight control over our bodies by providing a general theoretical framework and scientific application to the underlying mechanism of alternative healing.

A List of Alternative Healing Modalities

Yoga* Prayer* reiki* cranial sacral therapy* Singing* Laugh Therapy* meditative music* Deep Breathing* therapeutic touch* positive thinking* laying on of hands* acupuncture* bio-sonic repatterining* crystal healing, chakra* healing* tuning forks* humming bowls* chanting* quantum healing* AMMA therapy* aromatherapy* breema bodywork* dance therapy* Feldenkrais method* Jin Shin Jyutsu* hot rocks therapy* massage* myofascial release* Qi Cong* shiatsui* art therapy* color therapy* eye movement desensitization and reprocessing (EMDR)* guided imagery* music therapy* neuro-linguistic programing (NLP)* stress management* T’ai Chi* herbal therapy, hydrotherapy* magnetic therapy* acupuncture, and more.

OUR HYPOTHESIS

SCIENCE:
All matter is composed of molecules which, in turn, are composed of atoms. Going further still, one finds that these atoms are composed of members of an ever-growing list of elemental particles. Atoms attain their unique character by virtue of the structural arrangement of their constituent elemental particles. This structural relationship is determined by the energetic interaction between those elemental particles. Similarly, the structure of molecules and their energetic interactions with atoms ensure an ongoing
dynamic present in the body. Let's explore how this concept can scale macroscopically within a biological context and understand why it may be significant.

The human body is composed of many mechanically and electrically inter-connected structures comprised of different types of cells. In this view, biological activity is analogous to our gross description of raw matter above. We know that if large enough quantities of those cellular components are altered from their normal composition the associated structure malfunctions. Profound consequences can result due to the inter-connected nature of those structures resulting in a domino effect of failure or disease.

MEDICAL SCIENCE:
As an example to introduce one of the central underpinnings of our theory, consider one aspect of the human heart: heart rate. The rate at which the heart beats is determined by

the signals it receives from the sympathetic and parasympathetic systems. One system instructs the heart to beat faster in one system while the other system receives a slower instruction. The result is a constantly changing activation signal. Researchers disagree whether those activation signals can be strictly classified as chaotic or simply complex as viewed through the analytical lens of nonlinear dynamical systems theory. What is most interesting for our purpose is that if the complexity of the heart activation signal is lost or absent, so that the signal is uniform and periodic, then heart malfunction is imminent[1].

Here we observe two opposing processes such that if one were operating in isolation the destruction of the heart muscle would be rapid and certain. Yet it is the counter balancing effect of one process juxtaposed against the other that sustains the heart. Moreover the normal healthy functioning is one of controlled imbalance; the result is non-uniform. This elaborate dynamic has been identified in many areas of nature, physics and physiology.

ENERGY PHYSICS:

The two important features common to all normal functioning is the presence of simultaneous opposing processes and the resulting chaotic or non-uniform dynamic in which those processes engage each other.

How are these observations critical to healing in the context of the human body? The answer may be found within another area of research: energy physics. The property of sonoluminescence is the occurrence of a brief flash of light that is emitted from a collapsing gas bubble embedded in a viscous liquid that has been subjected to continuous sound waves. After the bubble reaches maximum compression and the flash of light is emitted from the core which is now in an extremely high energy state, it begins expanding rapidly. One would expect the bubble to simply expand and disintegrate but instead the resulting vacuum that is creating within the bubble prevents this by creating an internal counterforce to the rapidly accelerating bubble membrane. The bubble reaches a maximum expansion state until the arrival of a next sound wave which restarts the compression phase. Theories place the temperature of the compressed plasma within the bubble at around four times the temperature of our sun[3]. This phenomenon is neither revolutionary nor unique in our universe. “One of the key unsolved problems of physics relates to the motion continuous media and can be formulated as follows: Why is there a general tendency of the off-equilibrium motion of continuous media to be characterized by the formation of structures and the focusing of energy?” [4]

SCIENCE
A large percentage of the human body is continuous media whose off-equilibrium motion either on a macro or micro scale is critical to healthy functioning as we have illustrated with our earlier discussion of heart rate activation signals. If uniformity is imposed on those processes, passed from a healthy system to the sick system, normal function of the second system may be restored by retraining those processes such that its dynamic is once again non periodic or chaotic.

Before the world was round, it was flat. Before the body was understood, it was a stick figure, which after time, was known to have removable and non-removable parts.
A this stage in history, the human race is trying to understand that the body is more than a stick figure with removable and non-removable parts. It is trying to understand that, like planets and solar systems, it is both a macrocosm and microcosm of life. We are beginning to grasp the scientifically based notion that the body perfect synchronizes energetically and vibrationally to the All of Life—plants, trees, waves, sound, light vibration, and other living beings. We are slowly comprehending that the body perfect performs continuous media that looks like the above dominoes illustration in constant motion and in simultaneous overlaying configurations rather than the hours, days, and years we assign to explain existence: nonorganic words like life, death, eternity. The theologian Paul wrote a perfect description of learning to see life in the midst of life. “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (Second Corinthians 4: 17-18. ) It is this principle of the unseen and our dedication “to see beyond the “accepted and approved” world” that holds the key to health in the future.

In the time you have read this paper your body has, ever so quietly, and ever so swiftly, used its intelligence to perform billions of little expansions and contractions. Unfortunately, when this silent process repeatedly misses a signal, it impedes the actions of the original blue print. No problem. Knowledge of missed signals is part of the body’s self-healing protocol. It simply finds a new route in order to sustain life. To the untrained eye, this valiant and creative effort to survive is called disease rather than correction. In truth, it is creative, not failed, and for us who have lipedema and/or lymphedema, the body correcting itself looks like this:

The unseen triumph of the lipese body is that it is determined to keep its malaise from the internal organs needed to sustain life. This view of the body is compatible with a cosmological notion that God knows even when a sparrow falls from the sky. Ever vigilant, concerned with survival, caring and nurturing the whole, it constantly adapts to heal itself.

THE SCIENCE OF ENTRAINMENT:
Some mechanism must first exist, either artificially or in nature, if retraining of a process or energy pattern to another pattern is to occur. Again we can benefit from a historically early exercise in basic scientific observation and method. The phenomenon of entrainment was discovered in 1660 by Christiaan Huygens when he observed that if two separate pendulum clocks are mounted to a board their pendulum swings will become synchronized [5]. This happens because each clock imparts a very small amount of energy to the other clock and a type of feedback loop is created the forces the clocks to synchronize. Entrainment of mutually coupled systems has been observed and studied in biological, physical, electrical, social and financial systems.

The synchronization of two separate pendulum clocks lead us to the “HOW” alternative healing works. Our research argues that this entrainment event is the core mechanism to the success of alternative healing.

We have shown results from energy physics that off-equilibrium motion within a continuous media results in the formation of structures and that the focusing of energy is ubiquitous in nature. We believe that an individual with a consciously maintained healthy energy structures resulting from off-equilibrium motion within there cellular media should be to focus the resulting energy field onto the energy field of a less healthy individual. Entrainment would then cause the less healthy field to lock to the healthy one.

THE SCIENCE BEHIND HOW WE HEAL EACH OTHER:

Over time the associated underlying structures of the less healthy individual would also improve. It is critical to note that it is unlikely the healthy energy pattern would lock or entrain to the unhealthy one. The reason is that the unhealthy energy pattern is the result of passive entrainment to uniformity through the mechanisms of culture, diet and substances, whereas the healthy energy pattern is consciously cultivated and maintained and therefore more resilient.

Alternative healing then is analogous to a healthy person rewriting and rebooting the cellular memory of a person who is ill as defined in the phenomena of entrainment. His or her health state restores the unhealthy state back to healthy.
 

1. Wu GQ, Arzeno NM, Shen LL, Tang DK, Zheng DA, et al. (2009) Chaotic signatures of heart rate variability and its power spectrum in health, aging and heart failure. PLoS One

2. Vinita Rangroo Thrane, Alexander S. Thrane, Benjamin A. Plog, Meenakshisundaram Thiyagarajan, Jeffrey J. Iliff, Rashid Deane, Erlend A. Nagelhus, Maiken Nedergaard (2013).

"Paravascular microcirculation facilitates rapid lipid transport and astrocyte signaling in the brain". Scientific Reports 3 (2582). doi:10.1038/srep02582. Retrieved 9 December 2013.3. Putterman, Seth (1995). “Sonoluminescence: Sound into Light”. Scientific American(32), February 1995.

4. Seth Putterman, Professor UCLA. Sonoluminescence research website at ucla.edu

5. Birch, Thomas, "The History of the Royal Society of London, for Improving of Natural Knowledge, in which the most considerable of those papers...as a supplement to the Philosophical Transactions," vol 2, (1756) p 19.