Maggie has left the building

By Tatjana van der Krabben

In 2013 co-writer and co-blogger Maggie McCarey and I finally met in person. We only got to spend a day and a half together, but we seemingly manipulated time and made at least a week’s worth of memories. She taught me about the rich history of both the Stockade Historic District, Schenectady, NY and her precious mountains where she had a lovely little house, introduced me to her family, gave me a tour around Amish country and introduced me to an Amish friend, and we even found time to relax on a bench on the banks of the Mohawk River, while looking out for otters. In the meantime ideas were flying around and we discussed the potential of a clinic specialized in treating lipedema that someone suggested to set up with us. Just like that.

That is how I will remember her: a warm personality, a big heart, a creative mind, unafraid of dreaming, embracing life. Mindful of the past, the present and the future.

LIPESE was Maggie’s brain child. The lipedema handbook, the blog, the Facebook support group: she was the driving force behind our every effort. She counseled countless people behind the scenes, advocated for several men with suspected lipedema who have an even harder time obtaining diagnosis and adequate help. But one facet of her versatile legacy can be found in her brutally honest and detailed blog posts in which she shared a wealth of knowledge and experience regarding her journey with lipedema.

Maggie, it has been an honor being your friend and working with you. You will be missed.

Maggie has passed on peacefully, but all too soon, on July 30, 2018.

The Dreaded Spider Bite - Part 1

The Dreaded Spider Bite
Fear, Hopelesness and Recovery(ing)

by Maggie McCarey

  

      The spider that bit me was not a lovable arachnid named Charlotte. My nemesis was illiterate, or at least an ordinary spinner of webs. It did not care that I have carried spiders to safety for years and defended them to hysterical children; or, that native way teaches me to trust Grandmother Spider who spins light into the world. This spider did not move across my bed and bite in reaction to a sudden movement from me as I slept. How do I know this?  The spider started up a few inches, made two holes, not to its liking, and moved to a suitable drilling site three inches below and behind my left upper thigh, just out of sight and difficult to reach.

     How do I know it was a spider bite? I learned through this process that spider bites are indicated in contrast to other bites by an initial black spot where the venom of the spider causes necrotic damage until it is stopped.  This venom seems to carry an unusual intelligence that can adapt to any new attempt to dilute it within a few days.  This may explain why a spider bite takes approximately 6 months to cure. For we lipese who are constantly in danger of getting run away cellulitis by a simple ingrown hair, daily leg care gives way to hourly triage duty when nursing a spider bite.
 

“This is the life cycle of a necrotic arachnidism syndrome (spider bite). You’ll see it start from a small spider bite, to 1 hour with severe headache, impaired vision and weak to 18 hours producing joint pains (erythema endurated edema) all the way to 6 months later with a cratered scar.”

The spider bite cycle above is courtesy Oregon State Government.
(www.badspiderbites.com/necrotic-arachnidism-syndrome/)
 

      Of course, when I finally got around to taking this wound seriously, I immediately began the images internet search for examples of spider bites. The images turned out to be too horrific to impose on my readers here now. I will only say they were far worse than I imagined even though I knew a spider bite could easily be my undoing at any time. How did I know this?  My first exposure to lipedema was 30 years ago when an 80 year old woman called me at 2 am because I was her pastor and she had just been bitten by a spider. By the time I got to her home 20 minutes later, the ambulance crew had her strapped onto a gurney, and she was on her way to ER because quick and deadly cellulitis had already set in. Her daughter told me her mother was bitten by a spider years ago and immediately after her legs became heavier and heavier though she remained thin on top. Though she had starved herself for the past 40 years, she was obese and well, you know the rest of her story.

     September 16, 2017. I sat down at my chair after a busy afternoon being outside at my great grandson's 3^rd birthday party. I came in after the party and sat down at my computer. I became aware of an acute stinging sensation and I touched it though I couldn't see  it. That was the moment I should have been prepared for a spider bite rather than the moment I was afraid of one: my first stage 3-4  spider bite. Knowledge is key. A plan in place.

     I try to remain independent with my leg care. I often think we waste a lot of time talking about awareness, cures, and surgeries because lipedema is progressive, though some escape it, and we have more immediate issues, like how to keep skin from breaking down and bagging at our ankles; or how to get our toenails trimmed without absolutely burning our kids or mate out with daily needs. Today it was how to get a close look at the sting site. I splashed some lavender on it and the sting went away as did my memory of the yet identified bite. Over the next 3 days I did nothing. I felt the bite, but the warning signs? Seriously?  “...severe headache, impaired vision and weak to 18 hours producing joint pains....” Those and much worse are common for me on any given day, and this bite was out of sight and impossible to monitor.

     "Damn, that's hot," I thought on the 20th of September. I got my cell phone out and twisted my body, stretched out my arm as far away as I could from the bite and took a picture.

Worse days soon followed: a black spot and a beginning salvo of cellulitis.

     The photo to the right shows the hole getting deeper, white lumps growing  above the bite before cellulitis moved into the back of my leg at the inner thigh sometime in November, 2 months after the bite occurred.

     At this point, I had to make a decision to keep doing my own homeopathic course of action or go to urgent care.  When you decide to go all in with natural remedies, you have to battle the urge to run to a doctor for antibiotics. I have not had a prescribed antibiotic for 20 years. I have a very competent holistic nutritionist who has helped me to this point, and I was mentally prepared to see it through. However, with cellulitis well up my inner left thigh and my knowledge that it was either staph or strep bacteria, which can move quickly into sepsis, I made the decision to go to urgent care, not so much for myself, but for my husband and daughters who too use homeopathic medicine but who anguished over the idea that I was risking my life unnecessarily. 

     Was I risking my life? Yes. Just as I learned about lipedema in 2009, I lost a 28 year old parishioner, a single mother, who went to ER 3 times one night and was sent home twice. The 3^rd time, she died within half an hour. With the knowledge I have now, I could have saved her life, not necessarily with herbs, but certainly by going with her to the ER and being her advocate. Life is precious. That's why I went to urgent care.

  

     To be continued.  What happened at urgent care, what  I have learned from this most dreaded experience, and how I am better prepared for the “next” time. And, there will be one.

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 lipedema-themed Twitter account, 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,
Tatjana

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!