Monday, March 31, 2014

THE WINTER OF OUR DISCONTENT 2014


by Maggie McCarey

1.  We still have no answers.

2.  We still have no clinical trials.

3.  We still have no specific medical care resulting from research.

I experienced the mother of all cascades this winter with no help or support from the medical community to stop it. No proactive ER team to treat me with dignity and respect as it observed my body in distress. No lipedema specialist to prescribe immediate treatment. Oh, my primary would have happily looked at my legs and then shook her head in bewilderment for $200 plus co-pay but she could not treat me. So, I was as alone again for this potentially life-threatening emergency as I was the first cascade preceding my discovery of lipedema six years ago.  Absolutely nothing has changed in all these years. No medical community advancement. None.

I was on my own from the moment the first purple skin discoloration and twinge of pain covered my back left calf.  The twinge came from a little scratch made by my puppy.  The over-reactive inflammatory response to this scratch came from an immune system on high alert. The perfect storm: a scratch;  auto-immune anemia (the kind people with lupus, rheumatoid arthritis, fibromyalgia and lipedema get); cold weather that brings about chilblains, Raynaulds Disease, and/or cold aggultinin disease (interestingly all caused by the same inflammation-producing vascular irritation of small capillaries in extremities); and my pre-disposition to store toxic chemicals and waste in my adipose cells below the waist. 

A lipedema cascade. Months of frigid temperatures triggered my immune system and, when the cold relentlessly continued,  a horrific cascade filled my lower legs almost to the knee with inflammation.  I could only watch the hot red sludge climb up from my ankles to mid-calf, down to my feet and toes, and then swell my hands. the tissue becoming harder, impacted, more painful, and more resistant to touch every day. Two weeks ago,  my fourth finger on my right hand turned red at the tip and then quickly became blazing hot to my hand.  I went to bed wondering if I would die in my sleep.

 If I had gone to a doctor or to an ER at any one of the moments I have described, I would have been lucky to get a doctor to listen to me long enough to think beyond my fat legs.   And them I would have been prescribed antibiotics that my body would also likely reject.  (Fat legs?  Growing three inches of fat below my knees in days? Fat disorder???? Paleeze.) Every bit of self-knowledge I had about cascade prevention, everything that had worked beautifully for me, small scale, failed. Everything I confidently passed onto you, was swept away this winter of discontent.

I have now stopped the cascade, or rather, re-negotiated with it on an almost daily basis.  Inflammation is at least receding from just below my knees to a hard ban at the top of my calves and half way down to the ankles which are again soft. The feeling of danger is no longer imminent but also gone forever is the feeling that I can make room for lipedema. Let it be in my life on its side of the room. This winter I learned lipedema will never ever be gone; it may be in remission, but given a “perfect storm,”  it will reek havoc on me if I let down my guard.  It could happen before you read this blog.

Ever the scientific mind, I took mental notes, and I did work my way out of the cascade, but not yet the entire effects it had on my legs.  They have drained but not enough.  I added Vitamin B 12 to my regime and folic acid thanks to some serendipitous discussion on Lipese Challenge.  I had already been seriously and for the first time looking at my auto-immune anemia which I have had consistently since 1996. Blood disease, especially leukemia is our family nemesis, and denial for me has been the best part of valor. When folic acid and Vitamin B 12 were discussed a few weeks ago, they connected immediately to the research I have been doing on my low red blood count.  I think B12 and folic acid have helped.

It interested me, too, to see how inflammation layers.  After wearing my canklets for a year (2009), invented in desperation for cascade one, my legs were no longer hard as rocks.  With the inflammation in check, they became soft and fleshy past the hip up into the buttocks.  I hadn't noticed a pattern...how the inflammation had come or left ...and I had never heard of an inflammatory cascade.  This time, I was aware that I was cascading and I observed.  The inflammation began at the top of my right calf and a skin-fold reappeared that had taken two years to diminish.  This was the exact place that I had smacked against an open dresser drawer in my 20's and forever after felt a hard patch t like extra bone.  This time the inflammation moved up from this line towards the knee and also down past the knee into my foot.  Within two days, my left leg was keeping pace with my right leg with amazing inflammatory symmetry.  I was also in a lot of pain which is why I decided not to use my canklets in this emergency. (I haven't worn them consistently for two years as I simply didn't need them).  Finally, I talked myself into trusting the one thing that had changed my legs dramatically the first time.  I put the canklets on first thing in the morning and took them off only when I was in bed for the night.  Doing this reversed the cascade almost immediately.  I hope.

In Steinbach's novel, The Winter of Our Discontent, the hero, Ethan Allen Hawley,  comes close to commiting suicide because he loses himself in his ambition to make a name for himself. No I am not suicidal, but I am depressed to look back and see how little progress we have made, not in making people aware for we have accomplished much in this arena, but in making a name for lipedema among the medical profession.  Looking back only in my own life, I think I would now be  dead if I hadn't been my own health advocate the last 6 years, and I see no change coming in that direction.

I don't know what the median age is of lipedema women sharing support with each other on forums.  I know not many are over the age of 60.  Are we a part of statistics that appears in the mortality rates of the obese, the stomach, ovarian,  and breast cancer folks, the diabetics? At your age, this may not be a concern, but at age 62, having to diagnose myself at age 56, and becoming my own medical practitioner, as well as my daughters', and my granddaughters' primary,  is my concern.  The rage I felt for all of us when I first learned about lipedema kept me inspired.  Now, after this winter and my harrowing dance with lipedema, I am simply, honestly sad for us all.

Sunday, March 2, 2014

A Blog for the Faint of Liver

By Maggie McCarey

From Yang Jizhou, The Great Compendium of Acupuncture and Moxibustion (Zhenjiu Dacheng), ca. 1590:
The eyes represent the orifices of the liver. When a person closes his/her eyes and falls asleep, the blood returns to the liver. From there it is transmitted to the eyes, and the ability to see results from this. When a person sleeps, now, the nameless fire within grows dim in order to revitalize. Although it may be impossible to refrain from sleeping altogether, it is advisable not to just let this energy dissipate for the mere sake of falling into a slumber. www.itmonline.org

In 1994, I had my second complete physical collapse with the following triggers within one year: 1) gall bladder surgery: 2) a 3-week pharmaceutical cocktail aimed at healing ulcers but really an A-bomb of destruction, that killed parasites as stomach ulcers are now know to be; and, 3) a fender bender which triggered within me a full-blown cortisol/inflammatory episode, so intense that I lost 60 pounds in as many days. I was so debilitated that my Baptist father offered healing prayer over me for a week, and then his prayers became little messages for me to submit to my impending death.

My daughter, Stefanie, was more proactive. She went to an Amish healer in Jamesport, MO and asked the woman to see me. This healer read eyes to diagnose weaknesses of the body. She looked at my eyes and suggested that we work on cleansing the liver. That was a fascinating diagnosis for me because my eyes in my youth were sea-foam green, gold-flecked, and black-rimmed, set against jet-black hair, and commented on daily, especially by strangers. In my adult life they had faded to a quiet unnoticeable teal-grey and I started dying my graying hair at menopause just so my eyes would reappear in the mirror. What did my eyes have to do with my liver???

That the liver is such an important organ, especially for a lipese working towards health, is key to self-empowerment. One Chinese proverb says : The doctor who heals the liver heals a hundred diseases. So, really, WHAT DOES the liver do? According to Jessica Bates in Ehow Fun Facts About the Liver:

Food enters your body through your mouth and throat, then travels to your stomach and intestines for digestion. The broken-down food materials find their way to your liver by way of the bloodstream. Once these materials break down further, they are used to make bile, a necessary digestion liquid, and other substances.
Your liver also aids your immune system in battling infection. It stores vitamins, nutrients, minerals and sugar, and it is also responsible for production. Whenever your body needs these nutrients or hormones, your liver releases them to do their jobs. Your liver is in direct control of the chemical balance in your blood.
http://www.ehow.com/way_5662043_fun-human-liver.html#ixzz2rRDt9u34

Bates also says if the liver stops functioning a person dies within a day, not exactly the immediate death of a stopped heart, to which all romantic poetry, love songs, Hugh Grant movies, and biblical references, are made but still important. In fact, the liver seems to ignored by all of humanity’s curious interest in body parts, including The Wizard Of Oz: a heart, a brain, the “noive.” No, if I only had a liver. In fact, if the word liver is mentioned in our conversations at all it is liver-lilied, a negative reflection of a person’s lack of courage, but which began as an affirmation that the liver is the seat of courage (1600’s England), and, when blood is flowing properly, the liver is the color of a lily so named after the pleasing color of the liver. Yes, call me liver-lilied! Let’s not even discuss how many times and in how many ways many of us have expressed how we HATE liver, even the thought of liver, and how excitedly we proclaim our hatred for liver in culinary conversations. Oh be careful little lips what you say.

Further, Bates says, “the liver also stores fat, and if too much fat is stored there you can develop fatty liver disease. Alcohol, toxins and bacteria are isolated in your liver and flushed out of your body. Like a filter, the liver works as the body's detoxification factory.

Detoxification of the body as performed by our toxified livers is the only game in Healthville these days. Even so, a lot of us don’t even know where the liver is located and we don’t care to. Look how the liver lays over the stomach in this illustration and how often when we feel pain in that area we think we have a stomach ache. Also, look how the liver sits on the colon where so many people have said to me: “I got a sharp pain right here.” Energy workers reading this might well consider an entire session on liver detoxing. For some of us, the liver to the right and under the breast is the exact spot we instinctively rub when we eat foods our body won’t metabolize. We call them belly, tummy, and stomach aches but they are really our poor, ignored, and abused liver’s ache.

According to Chinese medicine, the liver is always where anger is held and released from.

Certain emotional states can result from, or cause, liver qi disorders. For example, a state of depression brought on by an unexpected event can eventually cause physical symptoms attributed to liver qi stagnation; liver qi stagnation, in turn, can cause mental depression. An intense outbreak of anger can induce sudden headaches, dizziness, chest pain, and other signs of -qi flare up (as the Neijing points out: "When a person is angry, the qi moves up); liver qi flaring up can cause one to feel anger. Sometimes a person will suffer a stroke ("qi and blood rushing to the brain") during or shortly after an outburst of anger. Anger is a physiologically normal emotion and will usually not cause disease. The constant suppression of anger or putting oneself always in a situation that generates anger, on the other hand, can be the cause of long ranging problems, since it promotes a chronic state of internal qi stagnation. www.itmonline.org

So we aren’t really pissed off at all. We are livered off. Its the spot where we feel a nudgy little pain when we cough hard or in our youth where pain stabs when we played too hard, and important to this blog, it’s the spot where many of us feel chronic tenderness and low-level pain. It’s the pain I blamed on my gallbladder before it was removed, and since it was removed, mythical gallbladder scar tissue. It’s also the spot that collects and maintains fat-soluble and B vitamins for you women who have had vitamin deficiencies after gastric by-pass surgery because you no longer produce or your liver no longer stores them.

*******************************************************************

So where were we? Oh, yes. My eyes. The eyes are windows to the soul. No that’s not it. The eyes are portholes to the liver. We brought a friend to see the Amish healer once. She looked into the friend’s eyes and said “Oh, dear you have not had a bowel movement for six days (“Exactly six days,” our wide-eyed friend confessed in the car.)

* Iridology an alternative medicine technique whose proponents claim that patterns, colors, and other characteristics of the iris can be examined to determine information about a patient's systemic health. Practitioners match their observations to iris charts, which divide the iris into zones that correspond to specific parts of the human body. Iridologists see the eyes as "windows" into the body's state of health. Iridologists believe they can use the charts to distinguish between healthy systems and organs in the body and those that are overactive, inflamed, or distressed. Iridologists believe this information demonstrates a patient's susceptibility towards certain illnesses, reflects past medical problems, or predicts later health problems. (Wikipedia)

It became increasing clear to me over the last few months that my liver has been working too hard as the “spot” has become more of a “hot spot.” I began a regiment of dandelion but still my liver grumbled too much over okay foods. I was talking to Catia, another daughter about this issue as I rubbed my liver, and she reminded me of an herb tea that I engineer with remarkable results with AIDS patients, cures for HepC and a nurse’s incurable liver condition because, my friends, the liver constantly regrows itself, and if you nourish it, it should grow faster than it is damaged if it isn’t too damaged. I purchased the herb and began using it. One day last week, I looked in the mirror and saw my old crazy green eyes peeping back. I noted I was wearing teal, okay. The day after, green. Okay, but even so, every time I went to the bathroom I looked in the mirror at a familiar friend I have missed for awhile. Then on the third day, I wore red and they were still sea-foam green. I told Stef and she said, “I noticed your eyes were back a few days ago. “ I thought and then I remembered. I looked at my nails, which have been ridging for a few years, despite my best efforts to nourish them, and they were smoothing out too. “It’s the liver cleanse, Stef.”
I will write more about liver cleanses in the near future, I promise, but in the meantime see if this description of blood and liver has anything in common with you.

LIVER BLOOD DEFICIENCY (gan xue xu): primary symptoms are pale face color; dizziness; dry eyes or, at a more advanced stage, blurry vision (especially at night); numbness in the extremities (including arms easily "falling asleep" while sleeping); limited flexibility of tendons and muscles. Secondary symptoms include pale lips and nails; dry, split, atrophied, or malformed nails; muscle twitching; spasms or cramping in the extremities; trembling hands or feet; occasional intercostal pain; ringing in the ears; in females: decreased and pale menstrual flow. The tongue is typically pale or pink; the pulse tends to be fine, or wiry and forceless.

Representative Herbs: tang-kuei (danggui), peony (baishao), gelatin (ejiao), ligustrum (nuzhenzi), cornus (shanzhuyu), cnidium (chuanxiong), zizyphus (suanzaoren), millettia (jixueteng).

Representative Formulas: Tang-kuei Four Combination (Siwu Tang); Tonify the Liver Decoction (Bugan Tang); Linking Decoction (Yiguan Jian) minus melia (chuanlianzi) plus peony (baishao).
www.itmonline.org

A Liver Song Dedicated to the Sisters I Love

http://www.youtube.com/watch?v=nGboNqFgBvw


LIVER LONG AND PROSPER!

Thursday, February 13, 2014

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.

Wednesday, January 22, 2014

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?

Sunday, December 29, 2013

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.

Saturday, December 14, 2013

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.



Tuesday, December 3, 2013

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…