Going Keto

By Darlene Lykins

At the first of 2013, I was an invalid in my office chair. It hurt to move. It hurt to be still. Everything just hurt with a screaming, burning pain. I felt sure that this was my death and so I began the finals – financials, directives, genealogy, passwords, and letters. One of the things I wanted to do was have the fat pads removed from the girls’ inner knees. I began doing the research and found that someone had typed one odd word on a comment board: lipedema. Even in my pain-filled world, curiosity won. I was off on a Google adventure. It didn’t take long to find out about renegade fat cells, inflammation, canklets, and pictures … lots of pictures that looked like me. In addition, that most heinous group of words kept cropping up: incurable, genetic and progressive.

Hope struck in the strangest way that morning. By researching further, I found the Dercum’s video and the lactic acid leakage explanation. Lactic acid? I knew all about the stuff that ended my running dreams. I had no ability to run distance or sprint without that burning foul, fermenting glucose filling my legs. Was that problem the same as this problem? Realizing that this terrible pain could be lactic acid, a ghostly memory flooded my mind of a woman telling me about this amazing diet that had “cured” her daughter’s epileptic uncontrolled seizures. In a huge moment of revolt from modern and sane medical advice, my next Google adventure began with the word: ketone.

I am not a doctor or have anything to do with the medical profession in even a small way. In fact, until that morning in January there was always one clear item in my educational passage … I hate science. Of all the time spent researching and studying subjects over the years, none were anything related to science or medicine unless forced to do so. It is not that I can’t get good grades or understand the facts/figures of the math and science. I just hate science with medicine running a close second. Now I find myself deep in medical research from around the world studying mouse models, learning the lingo and well, actually, hating science but I continue to read and learn.

Going Keto

Jack Sprat could eat no fat… His wife could eat no lean…

In the ancient past, our ancestors had poor hunting/gathering years, iced over continents, extra-long winters, belching volcanoes, and great migrations. Enduring these difficulties took more than a carb diet-hypothesis. Studied by George F. Cahill, Jr. in his career at Harvard, starvation pathway provides a pathway to survival (PDF). In response to starvation, ketone bodies insured our far distant ancestors’ survival. In our modern times, keto-adapted living provides many benefits to endurance athletes, medical patients, and people with special dietary needs.

Glucose-burner or ketone-burner
A glucose burning body covers all diets from high carb to low carb, which includes the high protein diet and omnivore diet. As a glucose burner the liver, kidneys, and pancreas act to create glucose, burn glucose, balance blood glucose, and store glucose/glycogen. A high-protein, sometimes called a low-carb, diet is a glucose-burner as the pathway, gluconeogenesis (GNG), changes protein to glucose. For a carb burner, the traditional diet consists of vegetables/grains, low fats (monounsaturated), and moderate to low protein along with lower sodium.

In the ketogenic diet, organs have different jobs. The liver produces ketone bodies instead of full-time glycogen/glucose. The kidneys, using gluconeogenesis, create glucose for the brain. The pancreas is up regulating its lipid breakdown enzymes and sparing its insulin. Much of the brain, the heart, and the muscles all now burn the ketones for energy production. For a fat-burner, the diet consists of quality fats (including saturated), adequate protein, and low carbs with much more sodium needed than in a glucose-burning diet.

Keto-adaption vs Ketoacidosis
Every diet must lower something creating an energy gap in order to make the body use its fat stores as fuel. Thus, every diet creates ketone bodies at some level as a by-product of fat burning. In keto-adaptation, the body trains over a period of WEEKS not hours to breaking down saturated fats, burn fats and control adequate storage of fats. Ketoacidosis, when the ketone level and blood glucose level are beyond normal parameters, is a state of imminent danger. Without a functioning pancreas, the production of ketones in the liver is like a nuclear chain reaction with the ketones building up in the blood stream doing incredible damage and ultimate death.

My Research
Phinney and Volek (video), (book); Peter Attia (video, video, blog); Freeman (book); along with bloggers McDonald, Sisson and Jaminet were my important resources. When I had the concept understood that I could eat more fat, and I believed that cholesterol would not kill me, I moved to the actual implementation by calculation.

Calculating my risks
The risk factors I found for not doing well on a keto-living style were weight loss surgery, brittle Type 2 Diabetes, celiac disease, eating disorders, confirmed heart disease, inability to digest fats or fatty acids, being a child/teenager, various chronic stomach illnesses, and probably others that I did not find. As I was clear on the ones I found, I moved into the math.

Calculating my Lean Body Mass (LBM)
Short of having an X-ray, MRI, CT or DXA scan of my lean body mass, the next best seemed to be the Covert Bailey formula (website). This formula measures areas not prone to lipedemic distortion along with the lipedemic-distorted areas. On the lipedemic distorted areas, I pulled the tape as tight as I could stand it in order to get as close to the muscle measurement as possible. For me, the formula calculates a 155-pound core body, which was the size of my body before the lipedemic distortion.

Calculating my ideal weight
I needed to add my healthy adipose (HA) in weight to my LBM. “Healthy adipose” is not an oxymoronic phrase, strange alien term, or fodder for comedians. A healthy adipose system is a key to having a good immune system, good skin, continuous energy, long endurance, correct hormones, wonderful lungs, functioning brain, and good general health. How much “fat” is correct? Women need 21% – 36% (website), with men’s numbers being lower. I am targeting the 36% mark because of my age and body shape. My formula looks like: 155 *times* 1.36 for ~210 pounds of healthy mass/weight. This is my ideal weight but it does not meet the approval of the AMA.

Calculating my body composition
As a point of fact, I will always weigh more than anyone’s ideal amount because I have lipedemic distortion/accumulation of—I am guessing low—around 20 lbs. Adding that into the mix, 210 + 20 makes me need 230 pounds.

I vowed to never sacrifice the actual amount of LBM and healthy adipose tissue I NEED for health to the inflammation/lymphedema/ lipedema weight I carry in order to make the scales in the doctor’s office look good. When I make this sacrifice, I am robbing my health and future.

But, is it fat?
If is it not burring away with diet and exercise, logic says probably not. Lipedema is lipo (fat) and edema (swelling). Fat: no one knows why it is strange and seeming stuck in storage mode so I had to ignore that—for now. Swelling: we know a lot about that and between inflammations from food allergies, toxins, other adipose tissue, lymphedema, and generic edema there are many points to attack. I chose to fight the inflammation and it was time to put the eating action plan together.

Calculating my protein
How much protein one should have in a day is a hotly debated subject. The truism of 25 grams per day is true and adequate for living – but barely. I follow Dr. Rosedale’s formula and picked low (.5) because of my age and known cancers in my family history. 155*.5 = 77 so I aim for between 75 and 100 g of protein each day from various sources to capture as many amino acids as possible.

Choosing my carbohydrate amount
Carbs are not essential but are nutrient rich. Primal Blueprint has the chart that most low-carbers follow; however, Volek and Phinney have re-introduced the concept of “Carbohydrate Intolerance”. Everyone probably has a personal set point where below that amount of carbs we can keto-adapt and above that amount we cannot keto-adapt. Physical clues are a large belly, general obesity, and other signs of metabolic challenge. Another factor to consider is high triglycerides with low HDL (paper). My choice was to eat a VERY low carb intake of zero carbs with the top end being around 30 carbs daily, which necessitated a good vitamin supplement plan. While I get my glucose from protein through gluconeogenesis (GNG), low glycemic veggies are an excellent choice as well as carriers of need micronutrients.

Calculating my fat intake
How much fat? Answer: The protein grams I selected + the carbohydrate amount I selected will be found in X amount of calories. Calculate: Protein*4 = kCal-p and glucose*4 = kCal-c. Add those totals together. ALL other calories need to come from fat—either dietary or stored—in a range above 60% of total intake. NOTE: Once I keto-adapted, calories are not important. Do zero math.

EH?
Instead of counting, I shift percentages of the macronutrients—carbs, fat, protein—to my needs.
• If I want to lose healthy, burnable lipid from the adipose tissue (lipedemic tissue is not burnable yet) I eat the same carbs, the same protein, and less fat. By creating this gap in the fuel system, the body will need to cannibalize its lipids in the adipose tissue because as keto-adapted system it will not want look for glucose.
• If I am at a good realistic-weight and only have that lipedemic fat hanging around, I need to eat the amount of fat to keep cannibalization from happening by making NO gaps in the fat consumption. Mostly, especially with lipedema, if the brain cannot see it has fat it will move on to muscles and that is never good. How would I know if the muscle was being burnt and I needed to eat more fat? One very wise person said my feet would smell of tomcat urine. I agree.
• If I need to gain muscle, I need exercise and an increase in protein in the ratio of 1 gram for every 1 pound.
• If I need to gain fat mass, I probably need to switch out to carb storage again by eating carbs to raise my insulin.

Keeping track over time
Once I had my totals for macronutrients, I used a multipage Excel spreadsheet system but apps like My Fitness Pal would work just fine without the headaches.

Keto-adaption
My basic training time to adapt was 8-ish weeks and I remained strict with my diet. The Keto-flu is a long dragging feeling as the body goes from being on this sugar rush to its more natural state. I keep a basic ratio of 2:1. An easy way to do this is add the protein grams to the carb grams. On a 1:1 ratio I would eat that many fat grams. On a 2:1, I need to multiply by 2. For a 3:1, multiply by 3 and so forth. Phinney likes to say when in doubt, eat more fat. My go-to for most deficits is good grass-fed organic butter, cultured grass-fed butter, homemade ghee, or MCT (coconut) oil. Absolute measures were not necessary I gained a new appreciation of how my body handles energy balance.

So what do I eat?
I tweaked Peter Attia’s eating plan for my tastes (here). I enhanced low-carb recipes by adding fat to keep the 2:1 ratio going. I reworked some of my favorites to create new comfort foods.

Other food tricks
Fat is a toxin holder—remember to find as many clean, chemical-free, hormone-free sources as possible. Eating out generally consists of eating before we leave and then just enjoying a coffee and chatting while we are out. Vacation was tricky but grocery stores became my fast food stops. When I get in a situation of carbs for miles and miles, I wait until I will get home to refill the fatty acid and the protein pools because hunger and eating every 2 hours no longer drives me.

Results!
One year ago, I was 335 pounds and now 255 leaving 25 pounds to resolve before I am at the 230 pound goal. Most of those pounds were inflammation. The rate of “weight” loss did not match my activity level. At times, I would have had to be at a 200% positive metabolic rate—just no way. Pain: the burning pain of fermentation is gone. Attitude about myself: I no longer try to destroy the healthy adipose tissue but am constantly building it up. The healthier it gets, the healthier I get.

The Future
A.) I will be testing cholesterol on a higher level using either VAP or NMR profile. B.) DXA scan. C.) Heart health screening. D.) Relaxation and meditation focuses for cortisol reduction. E.) Maybe an exercise program.

This not written for DIY parent to feed a child for either epilepsy or obesity. Children are very precious and they do not deserve any DIY fixes for their beautiful unfinished lives. Children can be lost to death very quickly eating this way through improper hydration, micro-nutrition deficiency or wasting. Get them real professional help.

Lifestyle changes with lipedema – do or don’t?

By Tatjana van der Krabben

Here at Lipese we speak of hope and leaving no stone unturned on the road to recovery. This upbeat message isn’t necessarily welcomed. We come across countless reasons to stay clear of lifestyle changes:

- It’s genetic
- It’s progressive
- It’s incurable
- If lifestyle works, my family will blame me all over again for being overweight
- My doctors says low carb and going wheat-free and sugar-free is not proven
- My doctor says birth control with hormones can’t affect my legs
- Exercise hurts

We get it. Of course we do! We, too, are in this boat. Frustrating isn’t it? Having lipedema, getting mixed signals, being told time and again that there’s no research to support claims. Conservative treatment is compression, manual lymphatic drainage and the piece of advice to ‘watch your weight’. Frankly, that’s not a whole lot to go on, especially combined with the ‘lipedema is progressive and incurable’ message. I got this speech as well from my dermatologist when I got diagnosed.

I always get an itch I can’t scratch when I hear the word ‘incurable’. Don’t you? Lots of conditions were incurable at some point. ‘Incurable’ is so negative. How are you supposed to derive any motivation from that? And how does that mean ‘nothing will help’? Many beg to differ.

Lipedema need not be progressive. You could possibly even reverse some of the symptoms. There. I said it. Do I hold the magic ingredients to a potion or something? No. Still, lifestyle changes have stopped the previously experienced progressive nature of lipedema in its tracks for a growing number of patients. It takes searching and tweaking and trying and effort. Lots of effort. But you DO have options.

With people sharing their experiences online through social media, you get an idea of what is driving people. There is no single diet that will work, unfortunately. Women report different triggers for sudden weight gain and/or sore legs, but also variations in the extend in which they cut out grains and carbs. I was asking around which doctors now recommend going wheat-free and sugar-free; giving up both tends to yield results for all involved. I abandoned that idea and this is why. Truthfully, you could still dismiss me for lack of scientific substantiating, for the absence of any and all medical trials, either pro or con for leaving out certain food items or incorporating certain exercise. You could argue that for the lipedema specialists that recommend leaving out certain foods, there are at least as many doctors, if not more, recommending something along the lines of the food pyramid, calorie counting or gastric surgery. It’s all out there and they are all considered to be lipedema specialists. True. But if you’ll indulge me one minute on the soapbox? Just one minute. I promise.

Sugar

Sugar is not really food. It’s a sweetener. You don’t actually need it. More so, it’s unhealthy. Regardless what a doctor specializes in, he or she will not frown upon you for leaving out sugar. There’s nothing wild and crazy about quitting sugar. It won’t lead to nutritional deficiencies. So, if there is a little fiber of hope left in you, after all the dietary disappointments you probably had, that something could work, think sugar. Here’s the actual challenge: don’t substitute the sugar for artificial sweeteners. Unfortunately more and more evidence suggests that’s at least as bad if not worse than sugar.

My minute is up. I’ll get off the soap box as promised. Should you give it a try for a couple of weeks, will you let us know how it went?

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?