Friday, March 17, 2017

My last lipedema blog – although never say never

This is my last lipedema blog, unless I stumble upon some huge scientific breakthrough I just have to share with you. Beyond that, it’s time to retire.

I’m currently at my heaviest, over 40 and yet I’m the happiest I’ve been in a decade. My lipedema is not stable, the fat has crept back on after liposuction, I deal with food allergies that mess up my attempts to eat low carb, and yet I’m doing great. I’m not pain-free, my mobility is affected and yet I’m enjoying life to the fullest of my abilities.

I finally got it. My life is a gift. Growing older is not a curse. I get to watch my kids grow up, spend more time with my husband. I managed to start my own business, lived that dream to write a novel (and started on the next). I travel whenever I can. I do what I love and I love what I do. It’s a gift. I treasure it all and I’m no longer willing to give my life a 2-star review because I got dealt crappy legs. And crappy arms. And some serious badonkadonk extraordinaire. There’s a whole world out there and I want to explore it, experience it, as much as I can.

The trick, for me, is to put the lipedema on the backburner, not allowing it to become a priority (anymore). Unfortunately, ignoring my lipedema to a responsible degree takes effort. You can’t read everything about lipedema, manage a Twitter account about lipedema, blog about lipedema, frequent lipedema-themed support groups, attend lipedema conferences and ignore lipedema. Obviously. So, I need to step back. Be selfish, or rather, take care of myself. Therefore I retire from lipedema blogging and will devote less time to lipedema-related topics, groups and events.
I wish you all well. Writing for this blog, for you has been an honor.

Lots of love,

Friday, December 23, 2016

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.

Tuesday, November 29, 2016

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

Thursday, October 13, 2016

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!

Wednesday, August 3, 2016

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 4th 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!

Thursday, June 23, 2016

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 Magnolia’s’-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.

Tuesday, June 14, 2016

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.