Traditional Chinese medicine and lipedema – Part 2

By Tatjana van der Krabben

A while back I wrote about my new attempts to work on my fatigue and winter circulation issues through Chinese medicine. In my case that includes acupuncture. Note: acupuncture is NOT recommended in lymphedema and this advice has been extrapolated to lipedema. I can only speak for myself and I personally do not experience adverse effects. Other elements of traditional Chinese medicine will also be addressed.

Of course I jumped the gun and tried to figure out my symptoms myself. I already figured out that spleen deficiency wasn’t all there was too it*. I was thinking adrenal fatigue. Or, as put in this context: kidney deficiency. Traditional Chinese medicine doesn’t differentiate between kidneys and adrenal glands as such. I thought I had it pegged: it explained fatigue, comes with symptoms like dizziness, tinnitus and back problems. With the body functions relying on heat from kidney qi, I figured there was my answer.

Although my present therapist being willing to look at other options than the ever blamed spleen, she rightfully did stick to her own path to diagnosis. It was a close call. She was almost inclined to go with kidney deficiency, but the truth is, I have more liver deficiency symptoms as it is. Turns out, even the hours of the day you are struck with fatigue and the exact location of your headaches are indicators of the source of the problem.

With more than 50% of the estrogen metabolism taking place in in the liver and with its other major job of processing toxins in mind, that’s not a crazy place to look for clues. Although…it’s technically not correct to copy and paste our Western idea of the liver onto the traditional Chinese one. When pointing at an organ’s name in this context, one best looks at the description: the whole of the described functions, thus labeled with an organ’s name, is telling you what it’s actually pointing at. I took the Wikipedia definition, because it’s quite readable and helps you see it in terms of functions, more conceptual: http://en.wikipedia.org/wiki/Liver_(Chinese_medicine).

The liver:
• governs 'unclogging and deflation' of qi and emotions. The free flow of qi in turn will ensure the free flow of blood, digestion, and water.
o the free flow of qi and blood is particular significant since traditional Chinese medicine stipulates that stagnation of that flow will cause pain.
o by association via its respective element each zàng organ is embracing a certain emotion. The free flow of these five (and other) emotions is thus linked to the unrestrained circulation of the qi of the zàng organs.
• 'stores' blood
• opens into the eyes
• governs the tendons
• reflects in the nails
• governs anger
• houses the hun (魂, "Ethereal Soul")

What is this ‘storing of blood’? In quite plain English, it’s to be understood as follows:

The liver stores the blood. The liver is considered a storage area for blood when blood is not being used for physical activity. These periods of rest contribute to the body's restorative processes. During exercise, the blood is released to nourish the tendons and muscles.

This function is also intimately associated with the menstrual cycle; the liver maintains an adequate blood supply and regulates the timing and comfort of menstruation. Any dysfunctions in the menstrual cycle are almost always treated through the regulation of liver blood, qi, or yin.

When liver qi is stagnant (a very common condition), a person experiences irritability, tightness in the chest, and, in a woman, symptoms of premenstrual syndrome. When liver blood is deficient, symptoms such as dry eyes and skin, pallor, and lack of menstruation can occur. (Source: http://health.howstuffworks.com/wellness/natural-medicine/chinese/yin-organs4.htm)

So, what rings bells? Circulation, reference to digestion and water circulation, mood swings, dry skin, bad nails and paleness and my dry eyes driving my MAD. I was prescribed artificial teardrops and was about to max out on my daily recommended dose when I turned to my therapist – that dry.

Treatment

Through acupuncture mostly energy enhancing points where selected to help boost my liver and counteract the fatigue. My circulation issues were addressed with a moxa lamp pointed at the abdomen. Nifty thing. Does more than make you feel all warm and toasty. It is said to alleviate pains, reduce inflammation, improve blood circulation and metabolism. Not a needle in sight for that one. The moxa lamp is also referred to as TDP lamp. It’s challenging to find information that is objective; most online information is linked to a site that is also selling them. This one is at least not linked to a web shop: http://www.livingwellpdx.com/TDP_Lamp.html. I still need to self-test a little, but I can say it goes beyond warming yourself in the moment. The effects tend to last. Also, with connective tissue massage (a whole other story) I get from my edema therapist, my abdomen where the lamp is pointed is the softest and suddenly requires the least attention. That’s interesting. So, I’ve ordered my own lamp and will use that for further self-testing. Hopefully it can also alleviate lipedema pain, or at least joint pains, but that’s a question mark at this point!

When my toes get that purplish-grey look, like death not quite warmed over, additional needles are used to make the circulation take that extra jump all the way towards the toes. I also went from 1000mg of cayenne pepper to 500mg, because although cayenne is warming, too much could have the opposite effect according to traditional Chinese medicine. Funny thing is, it’s working.

Last but not least two tiny magnets are taped to the top of the instep of my feet. That’s a type of acupressure – skin is not punctured – to boost circulation all the way down to my feet. They usually last a couple of days. They either fall off or begin to irritate a little. The little magnets prolong the effect of the treatment.

In the past, when focusing on circulation and the spleen, I would experience a brief pick me up after each treatment. Its fleeting effect kept me dangling in the same spot, not bringing me definitive improvement. The shift of focus to the liver has brought progress, possibly supported by a mild fall and winter so far. Although I feel it’s safe to say this is going somewhere. Any and all temperatures below about 15o C (59o F) affect me and not in a good way. We’ve had plenty of that already, including my worst combo: cold dampness. Yikes!

Currently, we’re looking at a way to take things up a notch and aim for further improvement, but also to enable the body into self-support. For that, my therapist again gave me her copy of Healing with Whole Foods – Asian Traditions and Modern Nutrition by Paul Pitchford (2002). I found the following, paraphrased:

To address insufficient yin of the liver, mung beans, mung sprouts, chlorophyll-rich foods, cucumber, tofu and millet are recommended, as well as fresh cold-pressed flax oil and extracted oils of borage, evening primrose and black currant seeds. In this context seaweed, watercress and plum improve water metabolism. Also, taking sufficient liquids in general is helpful. Improving the kidney yin function is always beneficial in cases of liver yin deficiency; aloe vera gel is among the best kidney yin herbal tonics for building liver yin.

When the liver blood is deficient, this is a yin aspect that needs to be addressed separately. It can be built up with blood tonics such as spirulina and other chlorophyll-rich foods, dark grapes, blackberries, huckleberries, raspberries and blackstrap molasses. Helpful herbs include dang gui root (Angelica sinensis), prepared rehmannia root (Rehmannia glutinosa), peony root and yellow dock root (Rumex crispus). The three Chinese herbs dang gui, rehmannia and peony can be used singly, but are more effective when taken together in equal parts.

Frankly, I’ve only started looking into these additional remedies. Berries like raspberries are currently out of season in these parts and I tend to watch my fruit sugar intake these days, although I love them. I want to look into cold-pressed flax oil, since that comes recommended for numerous things. I started out with a chlorophyll-rich supplement: chlorella. Why chlorella? For a very simple reason: when checking out spirulina, I saw chlorella too and it was much cheaper. When going through supplements and herbs like I do, all coming out of pocket, I do watch that aspect, too! The other thing I intend to do is have a seaweed salad more often. I finally found dried seaweed without green dye to make chuka wakame, so I can happily indulge myself. Yum!

At the same time I stopped taking Rhodiola, that was initially recommended to me to help defy the fatigue. After I started taking that, I found it was more so recommended for adrenal fatigue. It did little for me; only more confirmation for me I need to go with the liver issues as pointed out by my therapist**. The chlorella started working within days. All in all I now experience less headaches, slightly less dry eyes, I sleep like a baby and feel slightly less drained. My toe nails are also less brittle, but that already followed from the initial acupuncture treatments. Best part: it’s end of December and my feet DON’T kill me for a change, despite the cold. All baby steps, but greatly welcomed.
It’s a long road. The dry eyes have been bothering me for about 15 years and this bad, where medication is required, for about 2 years now. That should give a clue how long this has been undermining my health and how much we do on will power and not much else. Sounds familiar, ladies?

* http://blog.lipese.com/2013/09/traditional-chinese-medicine-and.html
** This blog describes a part of my personal journey towards improved health. I don’t endorse acupuncture or unsupervised administering of herbs and/or supplements. Liver deficiency was a diagnosis based on my individual symptoms. Deficiency and fatigue are generally linked to lipedema, but causes are individual.

Central Cleaning, Self-empowerment, and Walking Well One Step at a Time

By Dawn Henderson with Maggie McCarey

Dawn Henderson is one of our faith-driven forum members who keeps lipedema where it belongs as a part of her life. She has reported some compelling success and we have asked her to share her protocol with us. Ultimately, regardless of the surgeries, diets, etc we lipese embrace, we all have to find what works for us; sometimes in that process, we stumble onto something that might work for many of us. Dawn has discovered something called “central cleaning,” which is a very exciting possibility for many of us, and she has also found the right eating plan for her. Dawn’s Lifestyle Plan. Read about Dawn’s success in her own words.


Having lipo-lymphedema has been very challenging for me. I was diagnosed within the past six months with this, but have had this since I was a teenager. I wanted to talk today about how a total lifestyle change is allowing improvement in my health and my life.

One area that has made a difference is the food I eat. I used to eat processed and fast food a lot. It has taken me a while, but I now I love to eat fresh veggies and fruits. I also cook most meals at home if I am able to. I also love lots of chicken. I am working on adding fish. I have never really been too fond of fish, but I do enjoy salmon. I eat very little if any salt on my food. The salt causes pain and inflammation in my legs. I do treat myself with chocolate once and a while. I do not deny myself of the food that I want, that way I do not feel deprived. (Editorial note: whoop, whoop, whoop!)

Another area that has made a difference to me is exercise. Last year I could barely get around. I now get outside and take short walks. I also could not get into a car without my daughter's help. Now I am able to get in and out of a car by myself. My goal is to be able to drive by April of 2014. There are two types of exercises that I do that help me. Walking is one of these exercises. The other is called 'central clearing'. I learned this from my physical therapist. It is doing massage and movement on the sides of my neck, collar bone, under arms, shoulder rolls, circular rubbing of my belly, pressing different areas of the belly while I do deep breathing, holding each leg up while doing ankle pumps, and then doing leg lifts while sitting. This has really helped me in loosing the skin on my legs. They used to be really tight and heavy. It allows me to get around better. In the past six months I have lost three inches off of my legs.

I know that doesn't seem like a lot, but my life has improved so much and will continue to improve. (Editorial note: It is A LOT to take responsibility for your own healing)


Three inches is a lot, Dawn! And in the right direction. We were so intrigued by this “central cleaning” idea at Lipese, we got busy researching it. Hey, if yoga breathing can make you lose weight, why not pressuring the body to clear it of inflammation.

We didn’t find much in the mainstream literature but we did find a tantalizing article written by people who practice Eastern medicine. (essentially seeing non-surgical and non-pharmaceutical support for the body to heal itself). In the last several years, many Western modalities have begun to embrace Eastern medicine. Cranial-sacral therapy, sound therapy, massage, Donna Eden techniques, polarity, etc. I am glad to hear that “central clearing” has found its way into physical therapy protocol and language.

The following article on embraces both Western and Eastern medicine to gain optimum healing effect:

OPENING THE ENERGY BODY TO CLEAR THE CENTRAL NERVOUS SYSTEM

The Central Nervous System (CNS), the brain and spinal cord, is the major collection of nerve tissue in the body. The CNS is the major distribution network for the energy of the nervous system for feeding energy to all the tissues and organs in our system. The CNS clearing process is an important step…. Grounding… is affected in a number of ways from the CNS Clearing process. The spinal cord, at the level of the sacrum, connects directly to the sciatic nerves, the biggest nerves in the body. If, as we have found, an open pathway of energy through the nerves enhances body sensation and presence in the body, then opening this pathway through the brain, spinal cord and all the way through down the sciatic nerves gives us a remarkable, felt connection to the earth, to grounding, from the head to foot.

That's a lot! We use this connection to help people who tend to become overwhelmed by their emotions a way to feel grounded and embodied without going through their visceral core where strong emotions tend to be felt. Directional flow and emotional modulation- This same process establishes a directional flow of energy through the nervous system, the body and the auric field which we call "downward flow." Downward flow enhances ones grounding and bodily presence and counters the upward flow of fight/flight and anxiety (SNS over-arousal). It also helps bring our awareness down into the rest of the body if we tend to live in our head.

This article can be read in total, and with Eastern medicine description, at the following site:
www.pathwaysforhealing.com/node/228. (unnamed author )

In Cranial Sacral therapy, we find emotions hidden in pockets, called Energy Cysts by Dr. John Upledger, hidden all through the body. I witnessed an event in one of my Upledger classes, which always amazes me when I think about it. A fellow student was having mouth work done and when a cranial release occurred, the woman began singing opera in the most angelic voice. She had never sung because she “couldn’t carry a tune in a basket.” So yes 3 inches, and soft tissue, not hard, painful, and swollen, is a lot of right direction. DNA is an uncharted frontier as is the concept that we have perfect bodies in an imperfect world. Thank you Dawn for this wonderful testimony to your hope in action as you exercise faith and trust in finding you place in God’s design.

Liposuction – Please tread lightly

By Tatjana van der Krabben

Every time people inquire which surgeon I saw or compliment me on the visible progress I made since my liposuction, while sharing their own plans, hopes and dreams in that direction, I tell them to tread lightly. My answer often surprises them, considering the obvious progress I made, but there are several reasons to urge for caution. It’s not all rainbows and song. Here are a few misconceptions that I wish to address.

“Liposuction is a cure for lipedema.”
This claim doesn’t come from the medical field per se, but patients sometimes say this. Liposuction is not a cure. It couldn’t be a cure. You don’t need to be a doctor to come to that conclusion: fat is extracted. No more, no less. Current insights have revealed it’s at least in part genetic, in part responding to hormones and in part to lifestyle. That’s what’s known at this point. With your full genetic package intact post-op and the same old hormones, you’ll be anything but cured…

“The fat that was removed, will not return.”
Technically true and misleading. The very fat that was extracted was disposed of post-op, obviously, in those canisters. So that fat will not come back to haunt you. However, your remaining fat cells can continue to swell. There’s also speculation new fat cells can be formed. Not that farfetched, considering your adipose tissue also contains stem cells that can theoretically become any type of cell. When regaining it will likely start in arms, belly and/or back, but eventually adipose mass can also increase on your legs. I met people who experienced that…

“Only this or that doctor can perform liposuction safely.”
There are absolutely dozens of skilled doctors out there who can do this safely with lipedema patients. I hear of - for me - new names on a regular basis. And those doctors in turn train other doctors, who…. Etc. It’s getting a less exclusive area of expertise, although the geographic spread is very uneven, with Germany as the absolute hotspot. Most doctors work for private clinics and have very good use for this claim. Presenting yourself as the absolute top of the bill is good advertising. It’s also fuelled by patients, providing raving reviews of their surgeon, leaving the impression that that particular surgeon is the (only) person to go see.

There are exceptions: many doctors refuse to perform liposuction in case of advanced lipedema and/or combined health issues. For these people it can seriously be slim pickings when searching for a surgeon.

“It’s safe.”
As safe as any sur-ge-ry. Don’t ever forget it’s a surgical procedure. The fact you’ll most likely be treated as an outpatient, doesn’t mean it’s not a surgery. They worked on the procedure to minimize risks, yes, but any surgery has its risks. This one too.

Also, since your primary won’t be involved, most likely you’ll have to look around for a surgeon yourself. It’s costly. I see people looking at expenses before track record. Do they check your medical history? Do they explain what it entails, what you can expect? Or are they smooth talking you into doing this? And what if there are complications post-op? Will your primary help you or refer you back to your surgeon, even if that’s in another country or across the country? Ask questions. Come prepared.

“The surgery will provide cosmetic improvement.”
Yes – no – maybe. It takes skill to work on a large lady. A lot of skill. I’ve seen uneven results. Also, only so much fat can be extracted. Sometimes choices are made to bring as much relief as possible to one particular area. Think proportions: smaller legs will make your behind, hips, belly possibly look larger. Or the surgery will finally get the proportions right for you - that could also happen. It’s all very individual. Finally, you could be left with loose or even sagging skin. Some doctors will focus more so on providing relief, others take more interest in the cosmetic side. So even the approach varies.

Super cosmetic results are usually only achieved in stage 1 lipedema or early stage 2 with good skin elasticity. Meaning: I don’t have a superb cosmetic result either. I’m happy, but my expectations were realistic. So while someone recently said I should look into a tummy tuck, I accept the somewhat loose skin. Especially since it seems a bit crazy to have a special liposuction procedure to spare the lymphatic system and next risk lymph damage through skin surgery. No, thank you.

“I will never have to wear compression again.”
That remains to be seen. If you needed compression pre-op you could still be needing compression after the healing period. It’s a wait and see kind of thing. Maybe you could do with lighter compression or could afford some cheating. Maybe you’re so lucky you can give up compression completely, but don’t assume that’s ‘normal’.

“After liposuction you will need to wear compression 24/7 for the rest of your life, or else your legs will start ‘growing’ again.”
Thankfully that’s not true! The first few weeks post-op (exact recommended duration varies per clinic) you will have to do so. By then you’ll be very, very happy to toss them aside for the night. Seriously! After that it will be limited to the daytime and after your healing period it’s a question mark what you’ll need. That’s very personal.

Your legs could ‘grow’ again. True. That has to do with how stable your lipedema is. More likely causes would be hormones and lifestyle. Not pointing the finger here! If your doctor doesn’t know (much) about lipedema, you could be getting poor medical advice on your lifestyle. You could be under the impression you’re doing everything right, while another approach would be far better in your case. It’s a common problem, I’m afraid… There are many misconceptions on that as well and contradicting recommendations, even among doctors and therapists specialized in lipedema.

“How much weight can I expect to lose?”
Don’t expect the scales to show a plummeting number. One liter of fat weighs about a pound and only so much will be extracted. Substantial weight loss is sometimes reported. Post-op improved mobility can sometimes do that for you.

What can you realistically expect?
Literature on the benefits of liposuction is widely available nowadays. That means already many have been successfully operated on. Improved looks and/or contours and improved mobility are mostly reported, although not necessarily in that order. The average patient generally reports progress, or great progress, even. Perception does play a part here, of course. The other factor is your specific health status. Are you a stage 1, 2 or 3? How active are you? How stable is your weight currently? What’s your plan to maintain the surgically obtained result?

Liposuction can be a shortcut to potentially great improvement. All else is a matter of perseverance, trial and error. That doesn’t make the alternative or traditional route less valid or less important, or mean that we should all look at liposuction. Not everybody can afford liposuction, is willing to try a surgical solution or is a suitable candidate. Plus, if you want to hang on to your results, you better come up with a lifestyle plan you will be able to stick with, if you haven’t already. There’s your perseverance, trial and error again.

In short: you could get a lot out of it, but you’re not out of the woods post-op. So tread lightly, please. I did! My surgically obtained result is still intact. That’s 3 years since the first surgery and 1 year since the last. That’s all effort, not dumb luck or an incorporated effect from the surgery. Sorry…

PS. Please don’t shoot the messenger…

Body Dysmorphic Disorder

Or, for the lipese,
Thousands of Breath-Stealing, Belly-Tensing, Eye-Crushing, Bulimia-Inducing,
Soul-Mutilating public humiliations ending with:
‘What A Wonderful World This Could Be’ Without You, Fatty!”

by Maggie McCarey

Such an event made my top three list: I was on a road trip to New York City one glorious October Day. I wore a beautiful new Eddie Bauer dark green, 3-button cotton sweater that accented my wild sea foam green eyes and my thick, naturally black Irish hair. Eddie B’s neckline led the discerning eye directly to my cleavage. I was fifty but I looked much younger, not a wrinkle or a blemish on my face. I was with my man who loves to knead by belly and squeeze my legs with a manly growl. I am girlish and sensual around him, even in age, an outside cat lured away from barnyard enemies, chosen by the farmer, sheltered in his safe love, and with fire in his heart to keep me warm. I like being an inside cat to someone who is blind regarding my unworthiness to be loved and to my emotions dancing with fear even at his touch.

That is my life, truly. Not a cloud in that blue sky on I-90, not a glimmer of foreshadowing in the perfect yellow pools of warmth flooding over me. (How do we ever forget that the potential and the power to instantaneously disembowel us exists in every man, woman and child within seeing distance on any given day, including holidays, family reunions, our own weddings and our parents’ funerals?) We pulled into a rest stop to go the bathroom. I was at the sink and mirror washing my hands when another person left her stall to stand next to me. I saw her through my mirror stop midway to look at something ahead of her in absolute horror. I looked to see what was so repugnant to her: it was another woman, washing her hands at the sink, wearing the same Eddie Bauer she was wearing. I love Eddie because his clothes fit me as I shape shift from 2x to M to L and back again. This girl was a dreaded PDinkie. I was size XBlimp. She squeaked for a second like a teeny tiny field mouse noticing too late that her day had grown dark, light forever obliterated by huge feathered wings. A few other women watched as she ran from the bathroom. They looked at her fleeting back and then looked at my reflection in the same mirror I now saw myself in: their mirror, hundreds of them, packed in like theatre-goers gawking yellow-eyed at a fat, hugely fat woman, double chin sagging below dull pig eyes and jowl- round face, and in nice clothes, imagine that, well-manicured hair and make up, designer jeans and purse. I could see in their mirror that I was suddenly as ludicrously costumed as Miss Havisham in Great Expectations who is acutely aware that her life (my day) is and has been for sometime in ruin.

Bout’now, I imagine yur sayin’ “That’s yur top three? That’s all ya got?” I am not finished. I stumped out to the car, head down, which sadly was parked not too far away from PDinky’s car. She was sobbing in the front seat, and shaking her head, “no” as her man quickly pulled tops, one after the other, out of a suitcase and held them up for inspection. I got into our car and looked at my farmer quietly reading me. Our day, in turn, was now dark below the merciless wing. Someday, he may see me as the worthless, overfed mouser that others see, but that day, he reached over, and calmed me in the same way he had tamed me, one big Russian hand squeezing his strength into my dainty royal paw. No words. No. No. Later, he would rub my belly extra hard or grab my butt at the kitchen sink. I would push him away and feign indignation but for now, one squeeze and I was redeemed. This event is one of my top three Thousands of Breath-Stealing, Belly-Tensing, Eye-Crushing, Bulimia-Inducing, Soul-Mutilating public humiliations ending with: ‘What A Wonderful World This Could Be’ Without You, Fatty! because it drove home forever the terrifying fact that those who love us as we are have to be extraordinarily strong against the current of hate that swirls around us even on the most sacred of high holy October days.

From Great Expectations by Charles Dickens. Finn: That’s a big cat! That’s the biggest cat I have ever seen! What do you feed it?
Ms. Nora Digger Dinsmoor: Other cats.

BODY DYSMORPHIC DISORDER

I find the Mayo Clinic description of BDD to be the most comprehensive—lists.
http://www.mayoclinic.com/print/body-dysmorphic-disorder/DS00559/METHOD=print

There are two reasons I wanted to write about BDD. While some like to argue that lipedema at some point becomes primary with lymphedema, I would like us to consider, rather, that our disease may be primary stress hormone release, secondary lipedema, and thirdly lymph-compromised. I need to research this a bit more (and no this not the serious research I am working on), but the concept of hysterical legs is one that I could argue for experientially. I offer you a quick quote here:
The illness known as hysteria, sometimes called a conversion reaction, occurs when someone (who may or may not be normally "highstrung") reacts to severe stress by developing physical symptoms that cannot be traced to physical factors. Such people do not realize that their symptoms are caused by hysteria. They, and usually their families and friends, simply assume they have been afflicted with a genuine physical disorder. The problem is often of a kind that helps the person with hysteria to escape from a stressful situation. For example, if you see a terrible accident where you work, you may develop a weakness of the legs that prevents you from leaving home the next day or even for much longer.

http://www.streetdirectory.com/travel_guide/112853/medical_conditions/hysteria_diseases.html

If we considered that we might be genetically predisposed to being “highstrung,” and that we might pack that kind of stress in our legs, it is possible then that stress(cortisol) could be primary, not to the cause of lipedema, but to its severity and to “bursts’ of weight gain that seemingly refuses to go away. I can tell you now, I have never had a stress headache. My stress is carried in my legs to the extent that when I watch a show with the slightest bit of anticipation, I pumped cortisol to my legs. My nightmares as a child involved my legs freezing up on me when a stranger chased me, and in 2002, my legs literally froze for 3-4 months, after a particularly stressful situation. When I get out of a car after an okay drive in the passengers seat, my legs are tight from living my stress from the waist down as I apparently help the driver maneuver the drive.

Of course, we have BDD. Every time we are slammed, shamed, humiliated, weighed, we exhibit BDD. I call our obsession with appearance culturally forced, enforced, and reinforced narcissism. Darlene Lykins Kedslie and Rin Tapia summed BBD up in a recent lipese challenge forum.

Darlene: Somewhere along this path we are going to need to admit that we are in an abusive state with society. We have all the telltale signs and this is making those stress hormones just run riot. I try to do some sort of deep breathing when I am out and relaxation but the tension of just being out pumps the cortisol. Stairs, chairs, doors - just getting in and out of the car in the parking lot - grrrr. I can feel the fight or flight taking over. BP goes up, heart races etc. This was the same internal markers I had from being in an abusive situation, which ultimately leads to avoidance of the situation - only it is hard for us to do so. So if we are under this metabolic stress from "poison" foods and then you are under abusive stress from society add to that the stress we are conditioning ourselves to be under because of our "failures" ... is it any wonder we get extreme cortisol rushes, adrenal fatigue and general chronic fatigue?

Rin Tapia: My dear, you hit a giant nail right on the head. For years I have panicked at the thought of public venues chairs, doors, people. It was a nightmare waiting for me when I walked through the door to my house. I felt like the staypuff marshmallow man storming NY in Ghostbusters and I became that image. So there I was in my abnormal Pysch class during my associate level studies and the professor was addressing body image and anxiety. She got into how when we perceive ourselves to be monsters we become these monsters and she addressed the hormonal imbalances caused just by our thoughts. I was stunned I had been abusing myself for YEARS not to mention every restaurant that had tiny-armed chairs; every building with narrow doors and every person who sneered my way had helped with that abuse. 


Darlene: I am just now trying to face these issues. As an introvert I have many coping skills to stay way from this thing we call life yet something nudges me to move into, or back into, life. Terrifying but necessary.
What I am trying to say is that the thing that makes us ill might be a catch-22. Stress causes us to send cortisol to our legs, our legs swell: Uh-oh inflammation. More cortisol, please. Life becomes harsher. Life becomes more difficult. Life become crueler. More stress. More cortisol and more stress and more cortisol and more stress and packing it in our legs.

Taking Care of Us

By Christina Routon

Anyone who's ever flown on an airplane with a child knows that if the oxygen mask falls the adult is supposed to put theirs on first. If we don't, we're likely to pass out and won't be able to help our children our ourselves.

Women in general are caretakers and tend to put others first - their husband's careers, their children's activities, even their friends. But when is it our turn to be cared for?

This isn't about being selfish. I completely agree with being a partner, being a mother, being a daughter, being a best friend. I know all the sayings like "The world doesn't revolve around you," or "It's not all about you." But sometimes it should be.

As women with lipedema we can't afford to NOT take care of ourselves. If we don't watch our diet, do some form of moderate exercise, buy the compression hose (and WEAR them!), take our supplements and meet with our doctors what could happen?

Worst case scenario:

Our lipedema could get even more out of control - more weight gain, loss of mobility, loss of energy, more health concerns.

Then who will care for our children, partner with our spouse, visit with our friends?

We all need to take some time for self-care. It doesn't have to be a long amount of time and it doesn't need to cost a lot of money, but it needs to be a priority if we're going to beat this disorder and live our lives to the fullest.

So what can you do to take care of yourself?

1. Ask For Help. Discuss your needs with your spouse. What can they help you with around the house or with the children. If you're a single parent, meet with other single parents through your church or a community event or check out the Meetup website and see what's out there. Single parents can help each other. If you're a single person, discuss your needs with a friend or family member or see if there's a community program to help you with housework, transportation and other issues. There's nothing wrong with asking for help.

2. Support. I love our Facebook groups so much! There's a lot of support for just everyday life. Even though the group is online, I feel so many of these special ladies are my friends. Several ladies just met in person at the first lipedema conference held in Arizona. So make it a point to find support and advice, whether online or in person.

3. Eat right and exercise. I'm guilty of not doing this enough. Before I found out about lipedema I was at the gym every day for two years, living on chicken and broccoli, and got so discouraged with my results. Now that I know about lipedema and how the lymph fluid needs activity in order to move, I know this is important. That's why I'm making a new commitment to eating healthy (my choice is paleo / primal) and exercising 30 minutes every day. The difference is that instead of exercising looking for the end result (weight loss and, truthfully, wanting to look hot!) my goals are to gain strength and slow the progression of the disorder.

Let's make a commitment, today, right now, not next week or next month or next year, to putting these steps in practice and not finding the time but MAKING the time to take care of ourselves.

If you don't take care of yourself, who will?

Creation and manifestation of healing

By Sylvie Giroux

What I will talk about today is that process of creation and manifestation of healing. Many have heard of it or read about it without giving it a second thought. But once you do, you can alter your life experience.

The process of creation/manifestation of healing is quite simple and works BUT one as to not simply want healing but as to act as healed, FEEL as healed. Most inner thoughts and feelings we have about ourselves or life are rooted in Love/Acceptance or Fear/Denial. We are creators, we are using the creative force of Life/Universe every single instant of our lives! In order to heal, we must first choose it and be in action!

Now, more about Manifestation: it is about being clear about what you desire to experience in your life, then find the feeling that lies underneath that desire and focus on it, FEELING it as if a REALITY! Then take actions and start FEELING as if what you asked for is already present in your life! You can imagine yourself with better health. NOW the MOST IMPORTANT THING to remember is that IT works all the time but if our thoughts and emotions are rooted in fear we produce difficult experiences for ourselves! We attract to ourselves what we send out as energy. The Universe is like a huge Xerox machine so to speak. Our thoughts and emotions, and feelings have to be empowering ones to bring positive outcomes...
Let's say, in your mind you want to heal but feel deep down inside you have no power over it, the healing will probably not occur since both mind and feeling are not connected and on the same energetic wave length, this create a mixed message so the results, in matter, will be mixed as well!

One day, I came across someone who made a huge difference in my life by showing me how the process of creation works and this person is Dr. Deepak Chopra...and then Gregg Bradden's work had also a huge impact because it showed scientifically, stuff that has been known and experienced for years by ancient sages of many traditions...we can heal ourselves! 

In order to heal the physical body, we must first heal the energetic body. The energetic body refers to a complex web of interactions of energy centers in the Physical Body corresponding to what Hindus call "chakras". The primary centers are located in the center of the brain (6th chakra), the heart (4th chakra) and the belly (2nd chakra) with secondary centers at the top of the head (7th chakra), throat (5th chakra), solar plexus (3rd chakra) and base of the spine (1st chakra). The energetic body loses power when any or all of these centers become depleted, drained, exhausted, over-stimulated, unstable, and/or disengaged (inert and latent) and when this happen we get physically sick.

You can heal this body by going for energetic treatments done by an educated and well trained energetic therapist. You can also help this process by meditating, doing Yoga and Pranayama and by again, FEELING as you are
Healing. The Universe is like a huge Xerox machine that responds to your feelings!

Now, knowing this, a question arises. What are we going to CONSCIOUSLY do with that creative and healing power we all have? 

Traditional Chinese medicine and lipedema – Part 1

By Tatjana van der Krabben

Every year, as it gets cooler, my circulation stagnates. My extremities get extremely cold and the skin on my feet becomes parched. Leaving the house and facing the elements becomes torture and by Christmas I’m dreaming of a…white sandy beach. To boost my circulation I see an acupuncturist. I’m aware of the controversy. It is NOT recommended in lymphedema and this advice has been extrapolated to lipedema. This is by no means a hint to have acupuncture. I can only speak for myself and I personally don't experience adverse effects. However, traditional Chinese medicine is more than acupuncture. I wanted to dig a little deeper to see what their take on things is.

Three separate therapists specialized in traditional Chinese medicine have listened to my lipedema symptoms and all independently blamed a ‘Yin’ constitution, spoke of ‘cold’ and ‘dampness’ and pointed at the spleen. So, first things first: what does that all mean?

Yin and Yang are sometimes described as opposites. That would be an incomplete perspective. They are seemingly contrary forces, interconnected and interdependent in the natural world. Just think opposites that belong together like dark and light. The symbol for Yin and Yang depicts a rather fluid concept where they both touch and complete each other. Yin stands for femininity and is associated with the passive side, negative principle in nature, the north or shady side of the hill. Yang is masculine and associated with the positive, active principle in nature and south or sunny side of the hill. This goes a wee bit against my feminist nature, but that’s how it goes.

My present condition has been described as ‘Yin’, the cold slope of the hill. The part where the sun doesn’t shine and it rains a lot. A cold, damp environment. Edema is being associated with this ‘dampness’. In traditional Chinese medicine the source of the edema is often the spleen.

In Healing with Whole Foods – Asian Traditions and Modern Nutrition by Paul Pitchford (2002) the symptoms of this dampness are described, as well as suggestions for counteracting the dampness.

“Dampness creates signs of stagnation and sluggishness – the person is easily tired and feels heaviness in the body. If there is pain, it is fixed in one location. Condition of dampness include edema or watery accumulations in all or parts of the body; excess mucus, tumors, cysts, parasites, yeasts such as candida, fungi, excess body weight, and a thick and/or greasy tongue coating. Affects the functioning of the spleen-pancreas, and therefore weakens digestion.”

Different angle, namely traditional Chinese medicine, but it presents a familiar image. On the website of Ageless Herbs (http://agelessherbs.com/tcm/spleen-qi-deficiency/) the weight issue related to spleen deficiency is more spelled out and linked to insulin resistance:

“Insulin resistance is when glucose is rejected by cells as use as fuel, and then re-circulated to the liver to be stored as fat. The Spleen is pivotal in the ability of the body to utilize glucose for energy and building muscle and tissue on a cellular level. One can easily see how, in the face of insulin resistance, the body begins to store fat, regardless of diet; thus the cry of so many that they cannot lose weight regardless of how restrictive their diet is.”

Looking at this I can imagine why those following this orientation quickly pointed at the spleen en dampness to explain my current symptoms.

How to deal with this dampness and cold?
Below you find a list of things that doesn’t agree with dampness issues. From the traditional Chinese medicine perspective that is.

·         Dairy

·         Meat

·         Eggs

·         Tofu and other soy products

·         Pineapple

·         Salt

·         Concentrated sweeteners

Note: the lists vary! Several lists also comprised (refined) grains and sugar. This list was derived from the book by Paul Pitchford as mentioned above. They however all say ‘no’ to dairy and soy. And how about those sweeteners? Interesting theory they should add to the edema. We tend to look at it in terms of inflammation and thus causing the edema, but it’s also a digestion issue: the not lipese don’t necessarily get edema from that (and may be otherwise affected).
Pitchford recommends the following for dampness:

“Foods with dry dampness are often bitter and/or aromatic. Examples: lettuce, celery, turnip, kohlrabi, rye, amaranth, aduki bean, wild blue-green micro-alga, asparagus, white pepper alfalfa, pumpkin, vinegar, papaya, and bitter herbs: chaparral, pau d’arco, valerian, chamomile.”

For counteracting excess cold he recommends:

·         Work on fears and insecurities, become more active, avoid long hot baths, keep kidney area , legs and lower abdomen warm.

·         Use warming foods and methods of preparation. Don’t eat food below room temperature or very hot.

·         Use ginger root (preferably dried). Also use ginger, cinnamon bark or twigs, cloves, basil, rosemary, and/or angelica root.

·         Warming grains and seeds: oats, spelt, quinoa, sunflower seed, sesame seed, walnut, pine nut, chestnut, fennel, dill, anise, caraway, carob pod, cumin, sweet brown rice. Rice, corn, buckwheat and rye are acceptable here, as they have a neutral energy, but the other grains are cooling and should be used sparingly.

·         Warming vegetables and fruit: parsnip, parsley, mustard greens, winter squash, sweet potato, kale, onion, leek, chive, garlic, scallion, cherry, citrus peel and date.

·         Peppers and concentrated sweeteners are warming, but should be used moderately, because otherwise they are weakening with likely cooling results.

·         If the above remedies are not adequate moderate amounts of animal products may help. Butter is the only dairy product that creates warmth. Anchovy, mussel, trout, chicken, beef and lamb are some of the common warming foods.

The logic behind advice against cold foods and drinks is not difficult to understand. If you are already feeling cold and your body is somehow struggling to keep warm, the intake of cold items will demand even more of the heating capacity of your body. So, on board with traditional Chinese medicine or not, take a minute to think about it before you jump on the juicing and the raw food trend. It may not be for you, either because of the chilling factor or because it contains hidden sugar (fructose) with the extra fruit you are likely to throw into the blender as well.

When I first heard this about 10 years ago, I was annoyed and not particularly interested in taking this advice. I came from the food pyramid and 1000 calorie day plans. Salads were the only way I knew how to attempt to control my weight. I don’t argue it anymore. By now I’m miserable when I take cold food and drinks. I had to ditch the much celebrated hip, but unfortunately not so hot, veg smoothies. By day four I was in agony. I felt like I ate junk. You know that sickening, heavy feeling when you know you shouldn’t have taking something? Topped off by cramps an hour or so later to rub it in. I tried it again a few times, but had the same digestions problems all over. Less veg more fruit in the smoothie was my dumbest move in retrospect: the overload of fructose made my head spin on top of everything else.

I’m also feeling more attracted to the anti-cold remedies. Like a moth to a flame, really. In the dampness department the valerian was a fun surprise. To counteract stress I was recommended to take valerian. I noticed in the following weeks I dropped water weight. Four pounds so far. I had no idea it could do that, but found out through experience. Most of the other suggestions in camp dampness I find little appealing. Kohlrabi? Not since my mother stopped making me eat it! Asparagus? Well, only the green ones then. Lettuce and alfalfa? I can’t tolerate it until the temperatures are going up again.

Among the ‘body warmers’ you can spot a couple of familiar anti-inflammatories. Warming or anti-inflammatory or both: they all worked well for me. In fact, edema is decreasing still and despite the first few mornings with cold fog my feet are still toasty. I decided to be good and cut back on my intake of cayenne pepper capsules. Let’s see if less is truly more with that one.  

Conclusion: I did the acupuncture, but the progress is always temporary. The following session I’m always back to square one. I drag myself through winter. I experience less edema for sure, but I can’t seem to climb back on the ledge. I keep dangling. I’m not strained, more like running empty. Lately there’s finger pointing at adrenal fatigue. I pitched this with my acupuncturist and she took the bait. We are venturing beyond the spleen over the next few months. To be continued.

 

Yvonne van Stigt researches how to defeat lipedema

By Tatjana van der Krabben

October 2012 I attended a conference on lipedema. A very energetic lady delivered a lecture with a fellow researcher. I struggled to follow her on the topic of the leaky gut – then an only vaguely familiar concept to me. She got me when she mentioned low-grade inflammation related to lipedema. Bam! Yes, everyone, less than a year ago that was still news and at Lipese we were searching high and low for more information on the subject. And there was Yvonne van Stigt, not only on board with that, but also touching upon a sore point as how to fight the inflammation: with food - our enemy, our Nemesis. Van Stigt is a Paleo advocate, but a change of diet is only part of what she has to say. I recently had the honor of interviewing her on her views and plans.

Van Stigt has firsthand experience with lipedema
Yvonne van Stigt, specialized in clinical psycho neuro immunology, has an interesting history. She had, as she puts it, lipedema and started to study clinical psycho neuro immunology to help heal herself, as she couldn’t find the help she felt she needed in the traditional medical field. Unfortunately, her claim to have healed from lipedema sometimes yields adverse reactions. It is, however, not as controversial as it seems. She is currently free of symptoms. She described her legs as pain-free, no longer swollen, of a more modest size, but hardly perfect. Being symptom-free does not equal killer legs, unfortunately. I’ve met others coming pretty darn close to being free of symptoms. So her claim doesn’t offend me. More so, I find it inspirational.

Clinical psycho neuro immunology
Clinical psycho neuro immunology is described by Van Stigt as ‘system thinking’. Finding a correlation does not suffice: clinical psycho neuro immunology seeks to understand the underlying processes. When you hear her string her theories it’s like listening to someone describing domino chain reactions, one stone after the other going, coming full circle in the end.

When treating patients she lets them fill out a questionnaire first. During the initial session she observes people and goes over the questionnaire. She provides them with a set of rules regarding diet and exercise. Generally, the younger people change their habits, the faster and the better the result. In case of persisting health issues there may be (some) irreversible damage. She also says 75% can be sufficiently helped with these guidelines only. About 25 percent needs additional tests. A blood test seems like the next step, but Van Stigt isn’t necessarily keen on standard blood tests. “For instance: just because the blood has high levels of a vitamin, doesn’t mean there is no shortage on a cellular level. A blood test doesn’t tell that.” Instead, Van Stigt also uses urine tests or, when testing blood, zooms in on the red blood cell.

Thinking outside the box
Although she continuously speaks of causes for lipedema and doing something about it, she acknowledges it’s genetic. “A good genetic package would have left you with a solid foundation of muscle, naturally capable of burning fat. When you have lipedema, you lack these genetic benefits, making it challenging to burn fat.”

She doesn’t believe it’s hormones only. Like many of us already experienced, the early onset can predate puberty. Van Stigt identifies three triggers: stress, hormones and the immune system. Which one will tip you over the edge and will bring on obvious lipedema signs, is personal. Which triggers will continue to haunt you with symptoms is personal as well. This rules out a standard approach for each and all. “After the balance is gone and your poor genetic package is becoming a factor, your body reacts with a survival strategy,” explains Van Stigt. “This could be, for instance, diabetes, fibromyalgia or lipedema.” Lipedema here qualifies as a survival strategy, because the body is looking for a way to cope with the lack of balance. In case of lipedema, the body has issues disposing of toxicity. The lymph shutting down is a strategy of the body to prevent toxins from reaching vital organs via the lymph circulation, but it shutting down also hinders the disposing of the toxins. This also explains why, when reducing toxicity levels, the lymph start to function better, unlike for those with lymphedema. Technically, the lymph can do the job, provided it hasn’t gotten damaged over time.

As for treatment, Van Stigt works closely with a gynecologist who tests hormone levels. Bio-identical hormones are recommended when deficiencies turn up. To state the obvious: that would not be a deficiency of estrogen. Mostly, in case of lipedema, there’s estrogen dominance. As for the immune system – it’s often under pressure because of a poor diet. “Modern eating habits are poor eating habits by definition”, she says. Van Stigt, being a Paleo advocate, does sympathize with those dreading the transition to a different lifestyle, although she wouldn’t want it any other way for herself, knowing the consequences. “Commonly it takes 7-10 days to adjust to the changes. After that, you already start experiencing the benefits, which usually acts as a great incentive.”

Although not focusing exclusively on lipedema, it’s obvious she’s passionate when it comes to fighting this condition. She now has her heart set on a 10 day therapeutic retreat for lipedema patients coming winter. Van Stigt wants to give people all the tools and help them to learn to eat differently, safely start up with special exercise and stimulate the lymph through osteopathy, among other. She’s eager to prove that’s all it takes to get properly started with the rest of a better, more comfortable life.

I was jumping on my seat when I found out. I can’t make it on this trip, but someone out there wants to do something that could be the closest thing to a clinical trial that we currently have regarding lipedema, exercise and diet. To be continued!

Obviously, I’ve given a very brief and incomplete description of Yvonne van Stigt’s work. Her new book, which will describe her theories and findings regarding lipedema in great detail, is due mid-November in the Netherlands. An English translation will follow. I’ll keep you posted.

 

Is a high protein diet adding to lymph problems?

By Tatjana van der Krabben
In our efforts to manage our weight, we eventually leaned towards high-protein, low-carb. We are also picky about the protein: low in or, if possible, free of toxins and from organically raised and/or grass-fed animals. Polluted foods only lead to inflammation. But sometimes we also hear advice against a high-protein diet. It supposedly adds to the buildup of protein in the lymph fluid, further hindering the lymph flow.

I had to expand my search a little and found more information through lymphedema. We do have a thing or two in common, like lymph fluid high in protein.

Dr. Vodder’s Manual Lymph Drainage: A Practical Guide by H. Wittlinger, D. Wittlinger, A. Wittlinger and M. Wittlinger (2011) talks elaborately about nutrients being stored in our connective tissue. The short version, as quoted from Vodder (2005) is this: “All protein molecules leave the bloodstream within 24-48 hours, enter the connective tissue, and most of them are returned to the bloodstream via the lymphathic vascular system, so the term “protein circulation” is justified.”

Wittlinger et al continue to explain the problem with high levels of protein: “..the protein circulation needs a properly functioning lymphatic vascular system: otherwise there will be blockages and build-ups in the connective tissue, that is, the concentration of protein in the tissue will rise. This will lead to chronic inflammation, which in its turn will result in cell proliferation (fibrosis).”

Protein in your diet is blamed as a contributing factor: “If the blood protein concentration is too high, e.g., due to a protein-rich meal, various mechanisms of the endothelial cells of the blood capillaries will cause the protein to be released into the tissue in order to maintain homeostasis.”

By implying that molecules of the protein you digest go to the connective tissue via the bloodstream and are next absorbed by the lymphatic system, I get that some warn against high-protein diets.

There are two sides here. The other side being that the protein you digest does not become part of your lymphatic fluid:

Ray (2004) says this on the subject: “Although lymph fluid is high in protein, the protein is derived from the blood, not directly from the diet. Consuming less protein does not affect lymphedema and can have serious health consequences.” (http://www.amylhwilliams.com/Lymphedema.pdf)

Cornely (2006) quoting Földi and Földi says: “Lymphatic edema is rich in protein and arises from the reduced transport capacity of the lymphatic system despite normal protein load.” And: “Lymph transported from the periphery to the center in this semicircular system essentially consists of products which cannot be transported via the venous system. Among these products plasma proteins represent the main protein load.” (http://link.springer.com/content/pdf/10.1007/3-540-28043-X_3.pdf#page-1)

Two views and a need for useful advice on protein-intake
The Recommended Dietary Allowance (RDA) for protein for the average, sedentary adult is at 0.8 grams per kilogram of body weight. Recommended amounts found online vary greatly. Depending on age, gender and lifestyle (bodybuilding, attempting weight loss, Paleo, food pyramid etc.). So, your recommended protein-intake, when assuming this element of your diet does not interfere with your lymphatic system, depends on the health or diet guru of your choice.

When assuming dr. Vodder and those who follow his teachings, Wittlinger et al, are correct, this does have potential implications for your protein-intake. When you look at what the Wittlinger Lymphedema Clinic does recommend, you find a food pyramid style plan: http://www.lymphedema-clinic.com/oedemarten/5-saeulen-der-behandlung/ernaehrung.html
The base is fruit and veg and second are sources of protein. Yes, second. The single largest source of nutrition would have to be protein-based.

The Wittlinger Lymphedema Clinic even speaks of a minimum protein demand of 0,6 grams per kilogram of body weight. Their example of a 65 kilogram or 143,3 pound woman states she should have 39 grams of protein minimum. Since weighing 143 pounds would be something many of us can’t image ever weighing (again) and the sum of 0,6 grams per kilogram would add up unrealistically for many, I’ve contacted the Wittlinger Lymphedema Clinic to elaborate on their recommended diet.

Dr. Christine Heim, Director of the Dr. Vodder Akademie Walchsee, was kind enough to explain in more detail.

The 0,6 grams of protein per kilogram is related to a normal body weight. For your point of reference it is best to calculate from a normal height: you don’t add up 0,6 grams per kilogram indefinitely. That would imply that if you are a bit taller than average you would need more than the 39 grams from the example.

To my question what the maximum protein-intake should be, she replied that would be 1 gram per kilogram of body weight, related to a normal body weight. This allows for a substantial protein-intake.

So, whether you do or do not believe your diet contributes to your blood protein levels, it takes a lot before your protein intake is too high. It also doesn’t hurt to take a peek at the base of their pyramid: fresh veggies and fruit. Fruit has issues with (blood) sugar, but it’s also the thought that counts here. Grains and even more really starchy foods and sweets should be consumed in smallest quantities in comparison. First and foremost you need to work on your veg (and fruit) and protein intake. A modern perspective that doesn’t clash with the average dietary recommendations going round among lipedema patients. That’s reassuring.

Some have translated the potential impact of protein-intake into a low-protein recommendation. As you can read above, this is not what those following Vodder imply.  A word of caution: Dawson and Pillar (2011) state that low-protein diets are dangerous and quote Mahan and Escott-Stump (2007): “Proteinaceous foods are high in amino acids that are essential for the body. If protein is not acquired in the diet, the body begins to catabolise its own protein stores, resulting in muscle wastage and malnourishment.”

Tanning lipedema style

By Tatjana van der Krabben

The summer season is the perfect time for trivia. Of the (possible) symptoms of lipedema this one must be the most trivial of them all: legs that simply refuse to tan.

I’ve given up on a nice, even tan ages ago. I’ve given up on frying myself in direct sunlight as well. I get an uneven tan anyway due to my love of snorkeling.

I get a seriously tanned back and neck and the rest stays behind. Theoretically the back of my legs should be very tanned, too, with all that snorkeling.

As you can see on this picture that is not the case. Empirically that one doesn’t count 100%. I apply more sunscreen on my legs and my back tends to get neglected. Even though I also often snorkel wearing a t-shirt, both back and legs are not treated identically.

So this vacation I did a little test. Yes, I do have hobbies and no, I haven’t lost it. Just being curious! I applied sunscreen very evenly on the arms and legs, feet and hands included. Never just forearms or forgetting the hands or feet. I wore the same Birkenstock slippers all vacation (silver goes with everything and the tropic vibe got to me) and mostly went sleeveless and on the beach bikini and tankini. I used no wrap of some sort to cover myself on the beach. I never once bothered to wear stockings. Yes, I cheated. I can, provided I swim twice a day. So all got exposed quite evenly.


This is the result after 12 days:

My feet tan well and the legs stay behind. The combo looks like I wore pants all the time and only my feet were seeing any daylight. It does add up: feet are unaffected by lipedema. They do suffer with the excess weight and the legs being pushed outward, but technically the lipedema ends at the ankle. That artificial looking tan line is a bit lower than that, but hey.

The angle of this picture has not influenced the appearance. If anything, it makes the difference less obvious than it actually is. It really looks like I have a tan line across my feet. A tan line that has got nothing to do with the way my legs and feet were exposed to the sun, sunscreen or clothes. Theoretically that tan line should not exist.

The effect in the arms is a bit more subtle. The hands are tanned the most. The forearms are also tanned, but less so. The upper arms, which are affected the most by lipedema also had most trouble getting tanned. The first mark is at my wrist, the second mark just above my elbow. Unfortunately, the picture I tried to take ended up a bit too bright and doesn't really add anything here. According to this picture nothing got tanned and truthfully it wasn't THAT bad. Back to the 2 tan lines on my arms: neither can be explained through my wardrobe and/or blocked sunlight.

I came up with it on vacation, remembering some posts on forum and my own pasty white post-vacation legs in the past and didn’t look into the theory until afterwards. Patient comments on forum aside, I found two references: S. Evans (2013) Lipoedema: the first UK patient survey  (http://www.lipoedema.co.uk/wp-content/uploads/2013/05/BJCN_CO_lipoedema.pdf), and S. Lüthi et al (2012). Das dicke Bein (Not publicly available). Skin tone as a symptom more so gets a mention in diagnosing lymphedema.

It may be a trivial symptom in the scheme of things, but it’s yet another symptom that is largely being ignored. By now many more symptoms and possible coinciding symptoms are known, such as frail capillaries, hypermobility and vitamin deficiencies. With most doctors only the fat and edema get serious attention, but that leaves a lot of room for a different interpretation. More and better knowledge of the symptoms is vital. Or else getting diagnosed remains a game of medical Sudoku with your primary and/or may leave you with untreated additional medical issues like a vitamin B or D deficiency. Suddenly that pale skin of ours, cold to the touch, is not so trivial anymore.

Primary Penny

By Maggie McCarey

                                                Doctor: KNOCK! KNOCK!

                                                Patient: WHOSE THERE?

                                                Doctor: HEPA

                                                Patient:  HEPA WHO?

                                                Doctor: Sorry, I can’t tell you.

                                                PATIENT: But I can.

A VERBATIM with MY PRIMARY June 12, 2013

(A VERBATIM IN PSYCHOLOGY IS A CLOSELY APPROXIMATED CONVERSATION WITH A CLIENT AS WORD-FOR-WORD AS YOU CAN REMEMBER IT.)

HERE GOES

Primary Penny:  Hi Maggie. It must be a year later.

Maggie:  Really? Seems only a few days ago. How ar……..

Primary Penny:  Let’s see. You don’t do weight. Did we get a blood pressure?

Maggie: No becau…

Primary Penny:  Why not?

Maggie: Remember three years ago my blood pressure goes 180/over OMG when I am here.  You wanted me to go on blood pressure medicine and I agreed to if you gave me three weeks to monitor my own blood pressure.  We made sure my machine was correct by calibrating it to your office machine and three weeks of digitally recorded information showed that I have a normal blood pressure rate in a non-flight or fight situation.

Primary Penny: Well, that was then and this is now.

Maggie: Right. It is still normal.

Primary Penny:  And how do you know that?

Maggie:  Ummm.  I take it at home?  I have brought you a list of blood tests that I would like you to test if you…….

Primary Penny: Squaaaaawk!!!!!!!Why would we do that since there is no cure for a,,,a,,,you know…your disease?

Maggie:  There is no cure but there are many people with l-i-p-e-d-e-m-a who work with their doctors because collectively we have learned a-l-o-t the last few years.  Every year you take tests that give me very little information that I need…

Primary Penny: Like what^^&&^%^%?!!!!???

Maggie: Like cholesterol.

Primary Penny:  YOU DON’T THINK CHOLESTEROL IS IMPORTANT????

Maggie:  Of course, I do.  But every year it has been well within the normal range, which doesn't fit with any of your beliefs about being overweight.  You don’t explore that contradiction.  I am not dying from high cholesterol at the moment.  I am dying from lipedema.  Every year. I come here and you spend all of your time and my money ruling out cancer and high blood pressure.  If I had diabetes you would test my blood sugar and a lot more.  We would have an entire conversation about my diabetes.  Now I am bringing you four blood tests so that we can have a conversation about lipedema.

Primary Penny:  FINE! (Like a kid who just got a list of chores.)  What is the first one?

Maggie: The first one is the C-reactive protein to measure my inflammation level?

Primary Penny?  And what good is it going to do for you to know that?

Maggie:  Us.  It will help us to measure inflammation in my body with a base line.  You know how every other disease is determined to be under control.

Primary Penny:  So if inflammation is high, what can I do about it???

Maggie:  You can recommend an anti-inflammatory diet and you could give me a list of foods that are alkaline.  You can tell me  to measure my ph balance regularly, not unlike a glucose reading for a diabetic, and then you could take the blood test again to see if we are reducing the inflammation in my body.  You already prescribed Wellbutrin, which are anti-inflammatory as well as an anti-depressant. Herbs work well against inflammation.  You could tell me to go to Starbucks and buy Trite Green Teas.

Primary Penny: Okay, what are the other three?  I told her the other three. I just can’t order these tests for you.  Your insurance company won’t pay for them without a reason and since they don’t know about lip..lipedema….

Maggie:  But isn't it your job to run tests based on my symptoms?  Don’t you need to hear my symptoms?  Those tests rule out something?  They are created to measure something, right?  What about this one?

Primary Penny:  I would use that test to measure hypoglycemia. 

Maggie:  I have periods where my sugar drops.  If I don’t eat I can go to a point of no return with a pounding headache.  I have always wondered if I have hypoglycemia.

Primary Penny:  Well it might not be low blood sugar.  That could be a lot of other things.

Maggie:  Well, there you go.  Test me.  Rule out possible illnesses based on my symptoms.

Primary Penny: (getting into it).  It also tests myalgia….

Maggie: MYALGIA…OMG! I have fibromyalgia. It is in your notes.  Yes, test this for me…

Primary Penny:  Yes these are tests I can absolutely test you for….Tell me what herbs you use to bring down inflammation.  She wrote them in my official records.  SAWEET!

                                        AND THERE YA’ GO

She wheeled me out of her office down two hallways to the receptionist desk.  I really do like her BECAUSE she can and does listen.  She NEVER once has looked at her watch when I see her. And, best of all, I don’t think she is put off by fat.  No wait.  That’s second best of all. She studied enough information to diagnose me with lymphedema and lipedema.  I like that best about her. (YOUR PRIMARY CAN GIVE YOU A DIAGNOSIS).

Maggie: See ya' next year!  I waved at the door.

Primary Penny:  Oh no. I will see you when the blood test results come back.  She smiled, in charge.

Maggie:  Yes ma’m.  (progress)