Monday, February 16, 2015

Just Be My Friend

By Christina Routon

Hi, friend! Yes, it's good to see you too. How are you? It's been awhile, hasn't it.

Let me order my chicken salad - no croutons, please - and my unsweetened tea and we'll visit for a while. I want to hear all about your job, your friends, all the exciting things in your life. And I'm sure you want to hear about mine.

How are my legs? They're fine, thanks. Yes, I still have lipedema. Yes, I'm still wearing compression hose. Nope, no cure, but research is beginning, awareness is growing.

Am I eating organic?
Do I know what the dirty dozen list is?
Have I given up dairy?
Have I given up sugar?
Have I given up all grains, not just wheat?
Have I tried Paleo / Weight Watchers / Jenny Craig / HCG / Medifast / and so on?
Have I given up soy?
Have I given up nightshades?

Because if I do what you tell me to do (even though you're not a doctor / nutritionist / or even remotely qualified on the subject of diet, exercise and health) I can beat this thing?

Whoa, there, friend. Stop and take a breath. Yes, please stop.

I've lived with this diagnosis since 2012. I've had this disorder since I was in my early teens. Let me assure you, since you're so concerned for my health, that I've tried every diet known to man - and some I made up - over most of my adult years. The two years before my diagnosis I lived on chicken and broccoli and was at the gym six days a week. It took me two years to lose 60 pounds. That's when I knew something was wrong, and that's when I started looking for answers.

Now, friend, I'm not saying this to justify anything about my diagnosis or my life. I'm just telling you, right now, please don't go there with me again. Because what I also carried with me for most of my life is guilt. And shame. And blame. From family, doctors, strangers around me and even well-meaning friends like you.

I have lipedema, and it's a real condition and it's not going away by giving up dairy and grains and nightshades. If it were that simple I'd be cured by now.

So, friend, I appreciate your concern about my health, but what I eat or don't eat isn't up for discussion or debate.

No, I don't want your help. Not if your help is diet advice on a condition you know nothing about.

What do I want from you? I want you to be my friend. I want you to love me. I want you to support me. I want you to listen to my crazy adventures in this life and I want to hear yours. I want you to be understanding if I need to walk a bit slower or rest more often than you. I want to enjoy lunch and ooh and ahh over the baby's pictures on your phone. I want you to cry with me when life sucks and laugh with me when life is wonderful. I want to do the same with you. I want to do life together.

Just be my friend.

Friday, February 13, 2015

Rock your lipedema curves

By Tatjana van der Krabben

Valentine’s Day, the day of love and romance. Before you go over the final arrangements to give your love or loved ones a wonderful Valentine’s Day, I’ve got a big bear hug right here. For you. Yes, you! Of course you!
We’ve all been there: your body goes crazy and you don’t recognize yourself in the mirror anymore. Or worse: people rub it in how much you’ve gained and/or should lose weight. Stuff you can totally do without, to put it mildly. But where does that leave you? Is shopping still fun? Can you still be bothered to dress up? Is black your favorite color these days? Has your pretty smile left the building?

If so it does not have to be like that. Megan Trainor is singing about junk in all the right places and gets praised for it. Nicki Minaj is flaunting what we are usually trying to hide. And what do you know: the perception of what is true beauty changes every decade or so. That’s right: times they are a changin'. Curves are back! So here’s one for you:

If Kim Kardashian can be revered for her booty, so can you!

Or your other curves, for that matter. She simply markets them as beauty and shows her curves with pride. The way she presents it, it just is not open for discussion. Result: plenty of takers. Got to give her credit for that.

It all starts with a little confidence and self-love and that is what I wish for you all this Valentine’s Day. I seal it with a virtual bear hug, because we all need one sometimes.
That leaves just one more thing:

Tuesday, January 20, 2015

Will lipedema remain focused on treating symptoms?

By Tatjana van der Krabben

Lipedema is poorly understood. That much we know. We gain, we hurt, we swell and deal with inflammation. That we know, too. New research sometimes allows us to catch a glimpse of what is or could be behind the veil. Best examples I know of at this point is by Szél et al (2014) Pathophysiological dilemmas of lipedema (abstract) and by Bosman et al (pending) Prospective controlled study to determine the use of ultrasound in lipoedema patients compared to obesity, which reveals distinct characteristics in our connective tissue.*

But these glimpses are rare. Extremely rare. Most papers are still about liposuction or what lipedema looks like, including overviews of traditional treatment options. I know you can never get too sure about surgical intervention and within that area of expertise much is being learned still, about treating stage 3 lipedema, differences between types of cannulas and techniques etc. Most useful. Of course.

But still… With liposuction getting most attention and being presented in the media as a cure sometimes or the only effective treatment, a situation of supply and demand is being created, where patients place their money – literally – on liposuction. It’s becoming the thing to do and the thing to want. The next step, which is already becoming apparent, is that treatment becomes about liposuction.

I would like to see it as a tool in a toolbox that, like any toolbox, contains more useful tools with room for more and new tools. New tools, less invasive hopefully, and, dare I hope, even more effective, will not be found unless there’s a supply of data. But before there’s supply, there needs to be demand. We need to voice that demand. We need to be that demand. We need to strive for more insight into causes of lipedema.

There’s still much work to be done in raising awareness. Don’t give up on learning about the cause(s) in this lifetime. Perhaps, as one of the members of Lipese Challenge (Facebook group) suggested, it could be a plan to take matters in our own hands and get new research topics on the table. Why not? Doctors tend to see those in need of diagnosis and at that point barely informed. Once that hurdle is taken and some additional reading and thinking is done, the vital questions start to sink in. Questions we usually only express among ourselves.

I don’t mean to be gloomy, but we are currently at risk to see research regarding causes being skipped altogether in favor of treating symptoms. And nothing but symptoms.  A course of action that happens to so many conditions out there. Finding the needle in the haystack may not be particularly marketable at the short term, but I for one would love to see it found. Because, if you ask me, prevention for generations to come still trumps surgery for damage control.

*Feel free to chime in and point out recent groundbreaking research towards causes, which I may have missed. Make my day!

Thursday, January 8, 2015

Lipedema and Low Impact Exercise

By Maggie McCarey

     Contrary to popular belief, exercising to lose weight and to stay healthy is not a new idea.  Folks have been promoting exercise since I was a kid six decades ago. President Eisenhower established the President's Council on Youth Fitness on July 16, 1956 with a committee recommendation that all Americans be state mandated to exercise.

      Most of us from 1956 on engaged and continue to engage in physical fitness endeavors. Go Baby Boomers! Unfortunately, America has been on a slow learning curve regarding how much and what kind of exercise is needed to maintain health.  More was always thought to be better. On this curve,   I depended on a ridiculous amount of exercise and starvation to maintain a semblance of normalcy for most of my adult life.  Many of my friends, who don’t have lipedema,  also used over-exercising, particularly running,  to maintain their vast calorie intake and at the same time to remain thin.  All of us, male and female, thin and fat, over the age of 50,  have reached the same conclusion. We have had to relearn, rethink, and rebuild our exercise plans to compensate for our bodies’ aging process.

       Doing lots of exercise is great until your first serious injury occurs or your worn-out knees finally refuse to be abused. Everyone who depends on over-exercising to maintain weight is one twisted ankle away from total collapse of  his/er way of life.  I know. I and most of my friends have been there.  My best skinny friend, ran 5 miles a day for years.  In her mid-50’s, her back wore out.  She had disc surgery and then rotor cuff surgery.  She then moved to low impact swimming and bicycling 20 miles a day in order to eat all of the sugary desserts, pastas, and rolls she wanted.  Her back went out again and her leg with it. Now she can no longer ride her bicycle and she is a Joan Osborn cliche: Just like us because she used exercise to maintain an unhealthy lifestyle until her body gave out. Food intake and exercise are not synonymous. The reason  compulsive exercise is not okay is because you don’t get to the finish line with it…ever…  and then you still have to learn to eat what your body needs.  

     The same day you learn that you have lipedema, you learn there are only two things that medical professionals agree on about lipedema. You learn that you cannot exercise or diet your lipedema fat away and you learn that you must continue to diet and exercise to maintain what health you have. You also learn on every site about lipedema that exercise MUST be low impact. This is logical since our knees are often damaged and worn away from puberty onward with hyper mobility and connective muscle tissue that does not properly protect our joints. 

     So what are low impact exercises?  Generally, they are walking, cycling, rowing, swimming, and elliptical training.  Running is not on the list.  Now to really blow our minds, some exercise gurus are beginning to agree that exercising is fun, if that’s what you like to do, but it doesn’t do much for weight loss beyond a given point. Two experts, British medical doctor Michael Mosley and Australian exercise physiologist and associate professor at University NSWS, Steve Boucher agree that limited, targeted exercise 3 times a week is best. Mosley recommends intensity exercise bursts of 20 second intervals for one minute, three times a week to increase aerobic fitness and ability to process glucose. Boutcher’s clinical trial concludes 20 minutes of intense pedaling on an exercise bike three times a week is the best exercise for good health.  He says:

"Diets do not work in the long term for the great majority of people; the stuff we want to lose is the stuff we can't feel - it's devilish," Boutcher says, “of the insidious visceral fat that surrounds our organs but doesn't always protrude externally as a worrisome girth."

He suggests that removing stress and sleeping better are just as important as exercise and diet in maintaining weight1.

      Of course, every article I read while researching for this blog suggests that walking at a good clip is the best exercise for everyone. For me, even my walking days are over thanks to my compulsive, high impact exercising, but I still exercise, because when I stopped walking well, I was taught by a physical therapist to exercise every day before I get out of bed.  I target the areas I want to exercise, tighten my muscles for ten seconds in those areas and then release. Belly, thigh, knee, full body presses: tighten and release  You can do leg lifts, stretches, and side rolls.   You can sit at your computer, lean back slightly and exercise your butt and upper legs, ten count, release, and then take a deep slow breath in and out.  You can move any muscle in your body, including your heart to increase cardio-vascular strength via deep breathing and yoga techniques. You just tighten your target muscles the count of 5 and release, repeat 3 times and move on. It gives the same return as regular exercise because these intense bursts release glucose effectively and they aid NO (Nitric Oxide) production and flow, which is nectar for the muscles.

     You don’t need to push body weight down, around and over your muscles to properly exercise them, and now, apparently, this no/low impact exercise also helps you to lose weight. You can gain the same results on low impact and keep your body intact into old age, something I wish I had been told in time.


Wednesday, December 17, 2014

Gastric bypass, please be gone…

By Tatjana van der Krabben
I’ve been holding off on writing this blog for a few years. I’m biased. I’m biased because I’ve watched a close friend – as well as others – being reduced to shadows of their former selves after gastric bypass surgery. So, at this point, having watched them going through hell, knowing there is NO way back, because it’s irreversible, there frankly are not enough successful cases in the world to make me change my mind.

Lately I’ve noticed quite a few lipedema patients are being referred for gastric surgery. Also having serious, objective points of consideration on the subject, I feel I need to come forward. So please excuse my lack of nuance this time around.
1.       Referral is usually because of suspected obesity
Lipedema is not obesity. It’s not caused by overeating. The whole motivation behind the referral stems from a false mindset. When bringing up their concerns and questions regarding weight loss specific to lipedema limbs doctors a. turn out to be oblivious about lipedema, b. don’t respond to patients who indicate they eat little as it is. Eerily, when presented with this additional information, the recommendation usually still stands. I’ve never heard of a doctor taking it back.
As for results: reduced leg size is reported, but it doesn’t take the lipedema away. That’s because calorie restriction doesn’t fix lipedema.

2.       Gastric bypass surgery equals malnutrition
With the stomach reduced to an unnaturally small size and the small intestine being shortened, you will be unable to digest enough food to sustain yourself. I’m talking nutrients here, not fuel to prevent you from burning fat. You will need to supplement. That’s a given. Especially B12, calcium and iron are a problem.

3.       But you already needed to supplement?
You have lipedema. B12 quite possibly already was a problem. And some. Even when supplementing it can be challenging to keep symptoms of vitamin and mineral deficiency at bay. Gastric bypass surgery will add to that challenge.

4.       Do you need it?
Lipedema can coincide with eating disorders and/or obesity. Fair enough. But the whole procedure is created around the assumption you are overeating and unable to restrict yourself to the point you can bring your weight down. But many of us actually eat very little if not too little as it is. Suffer from undiagnosed thyroid problems. As already indicated, lipedema is not caused by overeating. If you don’t overeat, what is the point?

5.       Surgery damages the lymphatic system
Every surgery impacts the lymphatic system. Gastric bypass surgery is rather invasive. In lipedema management damage to the lymphatic system is not exactly welcomed. There’s no research on this issue. Most likely the surgeon involved doesn’t know about lipedema. Then who will advise you properly on this particular aspect?

6.       Gastric surgery doesn’t fix everything
Gastric surgery ensures reduced portions food-wise. It doesn’t cure inflammation. Only the type of food you eat can help in that department. It doesn’t prevent you from making poor diet choices; you could still eat pudding all day long.  It doesn’t fix an urge to soothe yourself with food; whatever underlying issue has triggered that need, won’t go away.

7.       Is it ethical?
Is gastric bypass surgery ethical? I wonder. Presumed healthy tissue from the small intestine is removed. Now I’m this nature freak, true, but isn’t it odd to remove parts of a healthy organ? Also, the stomach is being reduced to such a ridiculous small size, you can’t digest enough food to provide yourself with enough nutrients. Especially with the reduced intestine, which you need to absorb vitamins and minerals. You essentially get rewired for malnutrition. And it’s irreversible. Frankly, I can’t wrap my head around this package deal.

I’m not getting into risk of complications and the mortality rate. Like I said: I’m biased. Every surgery has its risks and statistics vary per conducted study and clinic.
There are other options. If you are willing to consider bariatric surgery, it doesn’t have to be a gastric bypass. Gastric banding is far less invasive, less connected to vitamin and mineral deficiency and reversible if need be.

Wednesday, November 26, 2014

Liposuction – short term or long term fix?

By Tatjana van der Krabben

Liposuction is not a cure for lipedema. Been there, done that. Buuuuut….how long will you be able to enjoy the benefits? Snaky question, which I don’t have an answer to. All I know is, that it could be much shorter than anticipated.
I’ve blogged about the fat sometimes returning fairly soon in individuals. This week an article from The New York Times from May 8, 2011 was brought under my attention again. It’s disturbing: in a year fat was regained. Be it elsewhere, but fat was regained. Oops. I also stubbornly insist you CAN regain at the locations where the fat was sucked away. You can. Many have.

Where does that sit with the (few) long term studies on liposuction in case of lipedema? Quite well, actually. It’s a story of give and take. A case of “yes, but”. The body appears to be fond of storing. In lipedema we took this to the next level. And some, if you look at patients in stage 3. With liposuction we “steal” fat from our body and the little hoarder that she is will work overtime to “fix” that. Bring on the inflammation. We’ll get you gaining at under 1000 cal. a day. Ha!  
Yes, but. Thankfully there’s a “but” in this. You can counteract inflammation. You can attempt to crack the code to your body and figure out an eating and exercise plan that works well for you. Balance the stress, tweak some here, tweak some there. More and more of us manage to trick our bodies out of hoarding. At least between hormonal highs and lows. When the hormones shuffle, we are, alas, riding shotgun. Screaming “stop!”, praying the hormones will listen and hit the brakes.

The cases in my mind, where fat came back at a cruel pace involved women who were close to hormonal changes or didn’t change their lifestyle. And perhaps it also is of importance how much is removed. It has been implied – not researched – that, in order to tip the scales and change the balance properly for the patient, a significant amount of fat needs to be extracted. I wouldn’t be surprised, although clueless how to define “enough” and “too little”. (Can I make another request for research? Put it on the list, please.)

So, when considering liposuction, it doesn’t hurt to ask yourself if it would still be worth it for you personally if you could only enjoy the new optimum for, say, 5 years. It can be. Like with me. My kids are small NOW. I wanted the extra energy to start a new career NOW. I have this new window of opportunity that I obviously want to last and last. Every year in my present state counts. I make it count. It will be disappointing when I get pushed over to the passenger seat and watch the hormones take hold for a while again, but that’s the risk. I was willing to take it.
I bring this up, because for you it could also be worth it, but you need to know to take a proper decision. Maybe you’ll decide to wait, until after you have a family. Or not. Maybe you secretly hoped lifestyle would be less of an issue after liposuction. Sorry, no. Essentially you’re buying time. Make it count.

Monday, November 3, 2014

Ditching the stress

By Tatjana van der Krabben

I used to focus on every little change the lipedema made on my body. I mourned what was lost. I mourned once more when I realized some things were lost forever. Through liposuction AND lifestyle changes I reached significant improvement, but I still have lipedema. Very much so. The children kept me extremely aware of my being different: Mommy can’t do this, mommy can’t do that, if I do that I hurt mommy. I considered a change of career, but couldn’t see how I could face the challenging course work  and then the work itself. Simple things like travel, long hours, much walking. Despite my significant progress I still felt limited and a little frustrated. And I still retained water regularly.
Little by little things changed. No matter how sweet the kids were in their efforts to help me, their response was prompted by the signals I gave them. I didn’t want them to treat me like an invalid. Because I’m not. Or worse: a victim. Yikes. It was up to me to make the change. For them I made the effort to point out what I could do and drop the fat vs skinny issue. I never, ever mentioned anything about being fat again. Mommy doesn’t eat certain things, or rarely does, because it’s bad for my legs. Period. Mommy gained a cool factor taking them in fast moving and spinning rides and became the dare devil who swims with sharks. The kids need a role model, not someone to pity.

Little by little this became the standard. My life became less and less about lipedema. I stopped measuring my waist daily. I went from stepping on the scales three, four times a day to once a week or so. When I heard about Ketogenic eating, I got tempted, but left it, because that required counting carbs. I don’t count ANYTHING anymore when it comes to food. No calories, no carbs, no scoops, grams, spoons, nor will I follow a fixed food plan. I learned that food restrictions act like a stressor for me and I’m staying away from that, because stress gives me cravings. I focus on healthy choices, although not exclusively, enjoy what I eat and only eat when hungry.

My last hurdle was my career. I loved to write, yet I felt that it was a choice I made for lack of options. It took me a while to realize, but all the other ideas for career choices I have dropped not just because it would be too challenging. Truthfully, I didn’t want it bad enough. Because if I did, I would go the extra mile and it wouldn’t feel like going the extra mile. I love to write. Long hours rarely bother me. Exactly because it doesn’t feel like pushing myself. It took me a while to see that. It dawned on me when working on a novel at night on top of everything else. I didn’t waste any more time and started my own business as a professional writer and translator.

Sometimes there’s a new challenge. Peri-menopause came knocking on my door frightfully early. I got hideous carb cravings and gained a little over the last few months. A first since liposuction. That stings, I can tell you that. After going through 4 surgeries and the cost involved, gaining is frightfully frustrating. I had hoped to have a few more years without this fuss. For a while I got fussy with the scales and tape measure again, but I’m regrouping. The stress is fading again and so is the pain in my legs. Even when I don't eat perfectly. To me that’s no coincidence. It’s sometimes difficult to step away from stress, but it’s definitely worth the extra trouble to try and break free of it.