What is the nature of the beast?

By Tatjana van der Krabben

“Hello beasty.” One of my favorite lines from Pirates of the Caribbean, from Jack Sparrow when finally looking his worst fear eye in the shape of a giant octopus. Very symbolic, facing your demons. How do I envy him for knowing the nature of the beast. I want to slay my dragon called lipedema. For that you need to know what you’re dealing with. So what is the nature of lipedema?

Focus on fat
In 2008 I got formally diagnosed with lipedema by a dermatologist in the Netherlands. I was told to try to lose weight. She could not provide me with dietary advice. My previous low calorie attempts had failed. I googled in Dutch: all the sources said “no known diet” or “diets don’t work”. I started to google in English and eventually found the Rare Adipose Disease (RAD) diet. The purpose was described as to limit inflammation, reduce pain and try to avoid weight gain. RAD diet is currently endorsed on Cure Lipedema blog with arguments such as: “…you’re loading up on foods that are naturally good for you and have the added benefit of reducing inflammation”. And: …”these foods also supply us with essential vitamins and minerals that help boost our immune system.” (http://curelipedema.tumblr.com/tagged/recipes)

Okay, hold on one sec: inflammation? I was always reading and being told I have a fat/lymphatic problem. What does inflammation have to do with things?

Inflammation
What does inflammation look like? The classical signs of inflammation are pain, heat, redness, swelling and loss of function. At the time I was not impressed. I figured pain simply comes with lipedema. The swelling comes from the lymphatic system and that is not doing its job properly because of the lipedema. So I left it. Partially out of disappointment; after finally finding a recommended diet (by dr. K. Herbst & FDRS), it was so rigid I could never see myself following it.

By 2010 media and the internet were exploding with studies linking inflammation to countless conditions. I can quote a lot of big words now from fancy research papers, but Marcelle Pick (OB/GYN OP) explains it in plain English. “It’s fascinating to watch the medical establishment discover inflammation. In the past few years there have been studies suggesting that chronic inflammation lies at the root of heart disease, cancer, osteoporosis, Alzheimer’s, autoimmune diseases like rheumatoid arthritis and psoriasis, and many other immune disorders.” (http://www.womentowomen.com/inflammation/default.aspx)

So there was the inflammation thing again. If it was responsible for so much and varied mayhem, why not lipedema? Or at least a contributing factor to lipedema? What’s causing the inflammation? The National Lymphedema Network summarizes it as follows: “Recent research suggests that diets that reduce inflammation might help with lipedema. The thought behind this is that fat produces inflammation in the body; therefore, a way of eating that helps reduce inflammation might help with lipedema.” (http://www.lymphnet.org/lymphedemaFAQs/questions/question_01_07.htm)

Sorry to jump from source to source, but we’re living off scraps here in Lipedema Land. Some more coordinated research would be useful, if you know what I mean. At the Nederlandse Lipoedeemdag (Dutch Lipedema Day) on October 6^th, 2012 a dr. T.D. Wentel stated lipedema is inflammatory. He also linked the fibrosis we often experience in advanced stages to inflammation. Dr. Wentel works with a highly respected expert on lipedema: professor Neumann. Sorry, paper is not out yet. Same conference, completely different angle (Psycho Neuro Immunology and Integrative manual therapy) same conclusion: lipedema is inflammatory.

In the Dr. Vodder Manual Lymph Draining (MLD) in the treatment of Cellulite and other Lipodystrophies it says: “Small vessel fragility, vessel pathologies and inflammation all contribute to the formation of lipoedema.” And: “…the protein build up thickens the ground substance of the tissue and generates chronic inflammatory processes. Chronic inflammation can induce formation of more mature adipocytes and lipid accumulation.” It says that when lipedema progresses, we’re dealing with chronic inflammation and the inflammation is causing weight gain.

Maggie McCarey and Stefanie Gwinn-Vega were way ahead of me. They found S. Nishimura et al (2009): “Recent studies have shown that obesity induces chronic inflammation in adipose tissue, and that cells of the innate immune system, particularly macrophages, are crucially involved in adipose inflammation and systemic metabolic abnormalities.” The fat isn’t just fat. It lives a life of its own. It secretes hormones into the bloodstream among others. While on the table  for liposuction we were talking about research into fat cells and the surgeon mentioned they found that fat even contains stem cells. I’m leaving it at this, this is a blog not a thesis, but for the skeptics and the interested: there’s plenty more to read. 

This leaves us…where?
We are currently being defined by two symptoms, one of them being fat. Thanks a million for the stigma. It is taking attention away of a factor we could fight (to a point): inflammation. I say enough with the fat already. Let’s look at the functioning of our immune system. Same conference, dr. Huijberts, based on preliminary outcomes of a questionnaire and her experience as an endocrinologist, linked a high percentage of lipedema patients to CFS and fibromyalgia-like symptoms, believed to be autoimmune related.

We’re not reaching here: inflammation simply is one of the first responses of the immune system to fight infection. Now, I don’t come with a lab coat and 8 years of medical school, so whether it’s truly autoimmune or what, I can’t be sure. What I can conclude is that our immune system is somehow getting its signals crossed; hence we respond with inflammation where others just move on and shed the pounds of holiday cheer.

What about hormones you say? Dr. Pick has a shocking quote for you: “Inflammation caused by hormonal imbalance could be a key reason why women suffer 75% of all autoimmune disease.” Ouch…

Healing in Community

by Maggie McCarey

Terms; Contemporary medicine applies health science, biomedical research, and medical technology to diagnose and treat injury and disease, typically through medication or surgery, but also through therapies as diverse as psychotherapy, external splints & traction, prostheses, biologics, ionizing radiation, etc. (http://en.wikipedia.org/wiki/Medicine)

Herbal medicine (or "herbalism") is the study and use of medicinal properties of plants. (http://en.wikipedia.org/wiki/Herbalism)

HEALING IN COMMUNITY

Many of you have read our book Lipedema: Help, Hope, and Healing and know that in 1992, while I was on sabbatical, my immune system went through an almost irreversible shut down. The medical profession could not find the root cause of this illness: I was tested for MS, Lupus, parasites, allergies, metal poisoning, Lyme’s disease, Lou Gehrig’s disease and so on. Each test came back negative.  I lost sixty pounds in a few months.  Doctors gave up on me and I was left to lay on a porch by day and to sit in a chair by night, unable to sleep more than an hour before jolting awake and in racing gear for the next 23 hours.

Because modern medicine failed me, I was led back to the teachings of my early youth, my grandparents’ penchant to heal their own, and in the present to an Amish healer who first treated me with herbs and then taught me how to use them.  At that time, I began online course work at The Herbal Healer Academy and studied every herb book I could get my hands on.  When I finally healed from what I now know to be an inflammatory cascade brought about by lipedema, I was also left with an interesting gift.  One afternoon, my husband said, “I have a blinding headache.”

I said, “I can fix it,” and for some inexplicable reason, I held my hand over his head until I felt his pain, and I drew it out into my hand.  His headache was gone.

I practiced then on children when I substituted at the local school and on neighbors who sought my help.  One evening after hours, frightened parents brought their son with an infected spider bite to me. I applied a poultice and the redness began to disappear within seconds.  His father had been suffering from a sinus infection for months.  He had recently gone to a specialist who put him on a high-powered antibiotic and pain medication and scheduled him for endoscopic sinus surgery three weeks hence.  Within a few days after the spider bite, the father retuned to my home begging me to relieve his pain before he took his own life.  I brought him to my sink and instructed him on how to use a netti pot.  I filled the pot with warm salt water and a bit of colloidal silver.  He did as I instructed and instantly massive amounts of mucus left him.  Within seconds, his pain was completely gone.

I could get side-tracked describing the numbers of times people have been cured in the most simple of ways like this but the point of the above story is to illustrate the difference between the two healing methods.  I am not interested in debating which method is better.  The world is consumed with competition.  Obviously, accessing both disciplines to achieve optimum health would be an ideal world. Unfortunately, in this imperfect world, that isn’t what happens.  Like placating divorced parents, you are sort of forced to choose between them.

I would like to suggest and emphasize in the writing of this blog that we are all genetically programmed to be healers.  Our bodies are their own healers.  Good doctors will tell you that healthy people die sometimes over the slightest invasion to their bodies while others who should be dead many times over survive one illness after another.  The latter carry the memory of how to heal themselves in their DNA.

Dr. John McKnight, professor emeritus from Northwestern University, is a social scientist and community development expert.  He argues for the community to be the most developmental aspect of society.  He says:  As institutions gain power, communities lose their potency and the consent of community is replaced by the control of systems; the care of community is replaced by the service of systems; the citizens of community are replaced by the clients and consumer of institutional products. (http://www.cpn.org/topics/community/regenerating.html)

           

McKnight says the more we institutionalize our humanity the less we remember how to be human. For example, people once knew how to offer condolences to others when a loved one dies.  Now we leave that uniquely human compassion to counselors train in grief.  We no longer feel adequate to express grief properly.

McKnight gives the most powerful example of how seven Chicago women banned together to save breast-feeding as a human endeavor.  The almost single-handed institutionalizing of bottle-feeding by the medical profession became a reality when Dr. Spock promoted it over breast-feeding in the 1940’s. Doctors convinced mothers that breast-feeding was unhygienic. Mothers were often coerced into taking shots to dry their milk up within hours of delivery. Somehow, the medical community was so powerful in its capacity to minimize humanity’s collective wisdom, it actually convinced us that mothers were jeopardizing their children’s health with their own milk. The Le Leche League was founded in 1955 when one of its seven members could find no one who could teach her to breastfeed her child, one year before breast-feeding in America dipped to its lowest level of 20% in 1956.  Since then, it has taken an international movement to keep breast-feeding a part of being human.

           

In America, there were as many as 98,000 preventable hospital deaths recorded last year. In England, there were 558 cases where doctors recorded that a patient had died in a state of severe dehydration in hospitals; 3 died of starvation; 78 hospital and 39 care home patients were killed by bedsores, 21,696 were recorded as suffering from septicemia when they died, a condition which experts say is most often associated with infected wounds. (www.telegraph.co.uk/health/healthnews/9591814/Patients-starve-and-die-of-thirst-on-hospital-wards)

Even so, we are programmed to believe that practicing herbal medicine is far more dangerous than traditional medicine, even fatal. Do not try to confuse us with facts! The American Association of Poison Control Centers' report utilized the data from 60 Poison Control Centers. They handled 2,479,355 human poison exposures of all sorts. Analgesics, all Big Pharma products, accounted for 11.7% of all poisonings, the largest percentage, followed by cosmetics/personal care products at 7.7%, household cleaners at 7.4%, and sedatives/hypnotics/antipsychotics, another Big Pharma group of products, at 5.8%.The category Dietary Supplements/Herbals/Homeopathic/Amino Acids, which starts on page 1138 of the report, indicated a single death, but even that one can be discounted because it's listed as "Unknown Dietary Supplements or Homeopathic Agents". There wasn't a single death from any product in this category

Vitamins, which start on page 1146, provided the same results—not a single death. However, pharmaceuticals were the cause of 497 deaths, out of a total number of 718 from all causes of poisoning deaths. Pharmaceuticals were responsible for … 69.2% of all poisoning deaths in the United States (in 2009) http://www.gaia-health.com/articles401/000412-poison-control-report-herb-vitamin-deaths.shtml

Now, I will eventually get to lipedema and the herbs that work for those of us who have lipedema and why they work, but we must begin with the war between healers and doctors and how that came to be.  We will have to ask ourselves how we got to a place where we line up for shots and drugs with mile-long adverse reaction warnings, and savage surgeries that serve as starvation aids when we cannot properly starve ourselves; and how as members of a community we stopped knowing how to care for ourselves and each other.  Otherwise, we will never find the courage to seek the path less taken, that is, to exercise our ability to lay hands on each other to take away pain or to accept alternative healing for our lipedema. 

           

All of us with lipedema know a lot about pain medication and we know that it doesn’t even begin to touch our pain—and we know that all of it has egregious side effects, including addiction.  Yet, we take it.  Let me leave you today with one small counterpoint to what you may not know to be true about pain relief as a way to help you see how institutionalized beliefs, rather than knowledge, lead us to irrational conclusions regarding our own health.

It is now generally proved that massage is the best pain reliever known to humanity.

"Basically we have found massage to be effective in chronic pain syndromes in arthritis and diabetes; in depressive disorders such as ones that autoimmune disorders -- HIV-associated diseases, too.… We    have looked at the A-to-Z of medical conditions, and we have not found a  single condition massage has not been effective for.”

Can we change towards that healthy news about the power of laying on of hands?

           

When we discuss herbs and alternative healing we are really discussing what it means to remember being human in community with other human beings who both heal and are healed by one other.  How many of you who have found your way to a lipedema forum cannot agree that simply being with others who care about your health has made a greater change for the better than most of your doctor visits.

 

Next blog on herbs:  How hundreds of thousands of herbalists were killed in conjunction with the invention of modern medicine.