Fatigue is my enemy

November 29, 2016, 12:16 am

≪ Previous: Shared decision making & patient empowerment

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

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Lipedema got a ICD-10 code!

December 23, 2016, 10:58 am

≫ Next: My last lipedema blog – although never say never

≪ Previous: Fatigue is my enemy

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.

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My last lipedema blog – although never say never

March 17, 2017, 11:25 am

≪ Previous: Lipedema got a ICD-10 code!

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,
Tatjana

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