MLD Therapy and Wrapping - Part Three

By Christina Routon

After about three weeks of wrapping I was ready to be back in my regular clothes, so Jodi set up an appointment for me to be measured at a local medical supplies company. I met Carey one morning before heading to work. I knew I wanted regular pantyhose, not thigh highs or knee highs.

It was uncomfortable being measured by a man instead of a woman. I kept telling myself it was for the greater good and I'd be back in my regular clothes soon.

I wore my wraps to the appointment and removed them there. This way we could be sure my legs were as small as possible. I wore a pair of loose fitting pajama pants over the wraps. Carey measured the same way Jodi did - using a small tape measure in various increments up and down my leg. We discussed the sizing and type and the difference between flat knit and circular knit. At the time, I remembered I'd read something about lipedema patients needing flat knit but I couldn't remember why. The flat knit seemed very thick, bulky and hot, so I chose to go with circular knit.

A few days later Carey had the cost - $600 for a pair of custom made hose!

There was no way I'd be able to pay that, especially since I wasn't sure how much insurance would pay, if any. So my husband and I discussed various options - getting knee highs and wearing them with a pair of store-bought capri length body shaper, waiting until spring and seeing how much our income refund would be or see if there was an off-the-rack size that would fit me, even if it wasn't exact.

I spoke to Carey about those options and he was able to find an off-the-rack pair of hose that fit within my measurement range. My cost was just over $100, which I paid using my Flexible Benefit card.

After wearing the hose a few days, I realized WHY lipedema patients need flat knit. The circular knit hose will bunch up around the ankle, the knee, and any other place you have lumps and bumps. The flat knit is supposed to do just that - lay flat, and not bit into the skin. My hose tend to pool around the ankle, just under the ring of fat. I'm constantly adjusting them during the day. Every night I check my ankles to make sure they didn't actually cut into the skin - sometimes it feels that way - but to be safe I put triple antibiotic cream around my ankles every night.

Mentally, dealing with the wraps was difficult. I found it hard to go out in public. No one said anything to me at work, even though I know some had to be curious as to why I walked around in skirts and tennis shoes with bandages on my legs. It's difficult to be in that headspace where you think people are talking about you or saying something about you. As an overweight person and now knowing I have lipedema, I seem to be in this place a lot, which is why it's difficult for me to wear dresses and skirts. Not physically difficult, but mentally, because what repeats inside my head is "They're looking at your legs," over and over like a broken record.

Physically, the wraps were a pain because they would fall and slip during the day. I couldn't take the stairs because it was difficult to walk up and down in the bandages. They would loosen and start to fall as I climbed. There were times they seemed very tight, especially around my calves, and I couldn't wait to take them off or loosen them even a little. Keeping them on difficult at times. I enjoyed my freedom from the wraps when I washed them and showered.

I've had my hose now for about two to three weeks and I'm still getting used to them. I have to put them on with rubber gloves. This helps get a good grip as well as making sure nothing tears the fabric. Pulling them over my ankles and calves is the hardest part - and it hurts the most. Once I get them over my knees it's a lot easier. The material is still pinching around my ankles. I tried wrapping some cotton and taping it around my ankles first to give some cushion, but I couldn't get the cotton to stay in place as I pulled the hose over my foot and ankle.

I had my final visit with Jodi yesterday and received my final measurements.

From October 7 - November 28:

Lost 1 inch from hips
Lost 1 inch from thighs
Lost 1/2 inch from calves
Lost 4 pounds of scale weight

Doesn't sound like a lot, but when you look at fluid loss, it's a lot.

According to Jodi, I lost two liters of fluid from each leg during October / November. That's the equivalent of two 2-liter soda bottles.

My slacks fit better and my skin feels better. The ring of fat around my ankle is smaller. I can see a difference in my thighs more than my calves, although my husband says he can see a difference.

Now that the therapy is done, would I do it again? Yes, I would. I do believe I gained some ground in stabilizing this disorder. I dealt with being uncomfortable, physically and mentally, because I believed it would help me in the long run.

I plan to buy a pair of flat knit hose as well so that I can alternate between the two pair. I don't know how I'll feel about them come summer, and I don't like the pinching, but if it means staying stable I'll continue wearing them, and I do believe they're helping.

Now that the wrapping is out of the way, my next short-term goal is to start saving for surgery, continue my wheat-free / sugar-free diet (I may go grain free next year), continue exercising three days a week and become stronger and healthier as I prepare for liposuction within the next two-three years. All that sounds well and good, but my ultimate goal for 2013 purely superficial - I want to buy a great pair of wide calf boots and start wearing dresses and skirts again.

The Foundation of Alternative Healing

by Maggie McCarey

holistic |hōˈlistik|

characterized by comprehension of the parts of something as intimately interconnected and explicable only by reference to the whole. • Medicine characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the physical symptoms of a disease.

Alternative medicine is also known as holistic healing.  Alternative medicine is the polar opposite of allopathic medicine, which is defined as the use of surgery and prescription medications or drugs to alleviate symptoms and thus to control a specific disease. Understanding alternative medicine as a philosophy is easy.  If you nourish the body, it will heal itself.  Alternative healing does not treat symptoms; it treats systems within the body: heart, blood, digestive system, liver, and colon, etc.  It is commonly believed that if these systems can be strengthened and repaired, the body will heal itself. But, it does so very s-l-o-w-l-y over a lifetime. Most people don’t have the patience for it long term and so get dismal results trying one herb after another without understanding how they work.

The commonly held belief among alternative healthcare practitioners is that a healthy body is an arid or dry body.  In contrast, a moist body is acidic and therefore a host for Candida, free radicals, and parasites: beach front property for vacationers. An arid body is alkaline and a moist body is acidic. All diseases thrive in acidic bodies.  To be alkaline is to be in process of living; to be acidic is to be in the process of dying. Your goal, then, if you wish to be healed, is to stay alkaline.  This is not something an allopathic doctor can treat you for even though s/he agrees with its universal truth.

Your body functions best when the pH of your blood is 7.35. If your blood pH gets below 7 or above 7.45, your body cannot function…. Typical characteristics of an acid person are: low energy, no enthusiasm, tires quickly, irritable or poor sleep. Acid people are often sensitive to cold, brittle teeth, weak nails or dry skin. The immune system weakens which makes your prone to viruses (cold and  flu) and recurring infections (bronchitis, urinary tract infection). If acidity becomes chronic, an  amazing variety of illnesses may occur and shows up in your body’s weakest spots. The  result is cancer, diabetes, PMS, arthritis or allergies. (http://www.thebestofrawfood.com/ph-scale.html)    

Many people do not realize that herbs (plant life) have been the foundation of medicine throughout human history. AND THAT HASN'T CHANGED. Even now, one-quarter of all prescription drugs comes directly from or is derivatives of plants. Additionally, four out of five people around the world today rely on plants for primary health care.  (http://www.bgci.org/plantconservationday/whyplantsimportant/).  If you consider this statement, you realize that allopathic medicine is the new kid on the block, not alternative medicine, and that at its foundation, it, too, is dependent on plants for healing, even as it studies plant life to recreate with chemicals. 

If you have ever been to a health food store, you know how daunting it is to find “the herb” that will help you.  When you look at all the different herbs and combinations of herbs, choosing one seems insurmountable and random, and the bottles appear to be in a foreign language only to you, not the other happy shoppers.   So how do you step into the world of alternative healing?  Many arrive after a devastating diagnosis and often too late for herbs to help their bodies heal themselves.  Others arrive after a prescribed pharmaceutical like a statin drug has done reversible organ damage.  Some like to have more control over their health than allopathic medicine offers with its one-size-often-fits- all diagnoses and pretty much cookie cutter treatment, i.e. 1000 calorie diet, antibiotics without testing viral or bacterial, and so they enter the world of holistic medicine.  In my case, my first near death experience was at age 3 after receiving a penicillin shot.  That left my mother and grandmother to seek alternative medications for me.  So when I was 23 and diagnosed incorrectly with rheumatoid arthritis, the medicine my doctor gave me to treat it, sat on a medicine cabinet shelf unopened.  A few years later, that arthritis drug was linked to numerous deaths, as have many since.

A recent Michigan State research concluded that “….4 million Americans experience adverse reactions to prescription medications every year. Some are relatively mild, such as minor rashes, but others can be fatal.” (http://www.protectpatientsblog.com/2012/06/drug_labels_you_dont_read_can.html)

Some of us heed these factual warnings against allopathic medication and so turn to other healing methods. You may trust your doctor to know what each drug prescribed can potentially do to and for you, but generally s/he knows little because your doctor often trusts the pharmaceutical rep with a business degree to determine your health needs. Your doctor may have been brainwashed into believing the pharmaceutical mantra that, even with drugs known to kill, blind, and damage vital organs, “the benefit outweighs the risk.”  For example,  Celebrex, a drug reportedly responsible for the deaths of 25,000 people before 2003, has never been pulled from the market.  Why? The benefit outweighs the risk????

If you are 1 of 5 people who never reads the risk factors you receive with your script, you are not a candidate for herbal medicine.  If you have no awareness or concern regarding modern health care and its insurance-controlled decisions over your doctor’s ability to order necessary tests; if you haven’t caught up to speed on over-use of antibiotics, if you are looking for a quick fix that overrides your symptoms and your body’s ability to do what it was created to do—fix itself-- or if you don’t mind an insurance carrier making ultimate decisions about your health care with your physician’s receptionist, then don’t bother with herbs.  If you can look in the mirror after a by-pass or lap band surgery and see that it works for you with no new medical issues to contend with—and that is very possible, then stay with what works for you. I f you are satisfied with your doctor and your care, then, seriously, don’t rush out and buy a herb experiencing its ten minute of fame on Dr. Oz. Don’t bother to mix and match.  Herbs don’t heal. They simply act in support of the body so that it is more able to heal itself. Taking one herb that promotes healing of a specific condition is like spitting into the wind. That’s why medicine cabinets are filled with half-used bottle of herbs.  They don’t work for you; they work with you and in tandem with other herbs, diet, exercise, vitamins, healthy environments, stress reduction.   They are natural.

                      The Story of Essiac to Illustrate the Ability of Herbs to Support the Body

In 1922, a native visiting a clinic in Ontario gave nurse Rene M. Caisse an Ojibwa herbal formula.  She used it in her clinic for the next five decades with amazing results.  I first heard about it in my herb classes in 1990.  At that time, the recipe was kept secret so I couldn't make my own.  I went to a huge health food store in Chicago and found everything but Essiac.  I asked a clerk if the store carried it, and with an immediate look of compassion (assuming I had cancer), she said “Yes, dear.  We keep it locked.  With that, she took me to the Essiac vault.  At that time, Essiac was being sold for upwards to $400 a quart on the brand new Internet and was so powerful in the minds of people that even a conspiracy theory of government interference evolved from its use.

Essiac tea contains four simple herbs: 1) burdock, a blood cleanser that farmers hate because it is so abundant in their fields; 2) slippery elm, an herb that is so drying I often used it to instantly cure poison ivy, and in the tea was used as an anti-inflammatory that made a dry host inhospitable for parasites; 3) turkey rhubarb which aids the body in eliminating long-held toxins in the bowels, and thus, is an excellent colon cleanse; and, 4) sheep sorrel, commonly found in ditches, and included in this blend because of its cancer-fighting properties.  Sheep Sorrel also has anthraquinones, including emodin, rhein, and physcian- to stimulate peristalsis (wavelike movement of waste out of the intestine) that increase the secretion of mucous, or inflammation, and water into the intestine.

Now, nearly a century later, Essiac is known far and wide in holistic medicine as a wonderful brew that strengthens the blood, liver, colon, and digestive system with astounding testimonies of cures.  I have recommended it to numerous people in the last 20 years with heartening results BUT the most important use came for me in an unexpected way when one of my daughters was diagnosed with cervical cancer.  I admit that I immediately fell back into the fearful notion that allopathic medicine was her only hope of cure, but, my daughter informed me that she had no intention of going for chemo because she had seen what Essiac could do for people.  She drank Essiac and every afternoon a state away from her I put on Spirit of the Zither by Carmelite Nun and did remote visual imagery healing on her uterus.  That was 15 years ago and she is alive and well.

Do I recommend you leave your doctors? No. I always have a physician for annual blood work and check ups.  But the last time I had an antibiotic was 1997 because there are natural alternatives that do not rob me of good bacteria needed for healthy flora. As you know, I take Wellbutrin because it works to reduce inflammation in my legs so I am not adverse to anything that works without threatening to do more harm than good but you must be the one who ultimately determines that for yourself because your life depends on it.  This belief is the foundation of alternative medicine.

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…

Low-Carb, Sugar-Free, Grain-Free Holiday Food

Around the holidays we are culturally surrounded by food. From Thanksgiving until the New Year we are constantly bombarded with the wonderful Holiday foods that we look forward to every year. It becomes more and more difficult to just say no. Well I am here to tell you that being on a low carb, sugar free, grain free diet doesn't hurt at all. I have found some traditional foods and revised them to make healthier options for us.

I would also like to say that Thanksgiving, Christmas and New Years all happen once per year. This way of eating is a lifestyle and not a diet. If you want to taste a traditional treat on these days, then by all means don’t restrict yourself. The more you can stay away from wheat the better though. Wheat has been found to be very addictive. If you are one of those people, like myself, that do find yourself in a downward spiral after eating wheat, then try to find a different way to splurge and opt for corn, rice or potato dishes.

Here are a few guilt free guaranteed to keep the weight away recipes to add to your Holiday meals.

Grain-Free Almond Bread for Stuffing

3 to 4 eggs
1 tablespoon raw apple cider vinegar
1/2 cup barely melted butter, coconut or olive oil
2 cups blanched almond flour/meal
1/4 cup flax seed meal
1/2 teaspoon sea salt
1/2 teaspoon baking soda
Garlic, sage and whatever other spices you like

Preheat oven to 350 degrees Fahrenheit.

In a mixing bowl, beat eggs well with vinegar.

Add butter or oil and whisk together until well combined.

In a separate bowl, combine almond flour, flax seed meal, salt and baking soda and spices. Add flour mixture to egg mixture and mix until smooth.

Press into a greased 8″ or 9″ square baking pan.

Bake for 30 to 35 minutes until golden brown or toothpick inserted comes out clean. Cool for 15 minutes. Cut into small squares and either leave out to dry, or put back in the oven on low heat until you get the hard chunks for stuffing.

　

　

Cauliflower Mashed “potatoes”

1 head of cauliflower
3 tablespoons milk
1 tablespoon butter
2 tablespoons light sour cream or cream cheese
1/4 teaspoon garlic salt
freshly ground black pepper (optional)
snipped chives (optional)

1. Separate the cauliflower into florets and chop the core finely.

2. Bring water to a simmer in a pot, then add the cauliflower. Cover and turn the heat to medium. Cook the cauliflower for 12-15 minutes or until very tender.

3. Drain and discard all of the water (the drier the cauliflower is, the better) and add the milk, butter, sour cream, salt and pepper and mash with a masher (or blend in a food processor) until it looks like "mashed potatoes." Top with chives.

　

Stuffed Mushrooms

24 ounces, weight White Button or portabella Mushrooms
1/3 pound Sausage
1/2 whole Medium Onion, Finely Diced
4 cloves Garlic, Finely Minced
8 ounces, Cream Cheese
1 whole Egg Yolk
Shredded Cheddar cheese

Wipe off or wash mushrooms in cold water. Pop out stems, reserving both parts.

Chop mushroom stems finely and set aside.

Brown and crumble sausage. Set aside on a plate to cool.

Add onions and garlic to the same skillet; cook for 2 minutes over medium low heat. Add in chopped mushroom stems, stir to cook for 2 minutes.

Set mixture aside on a plate to cool.

In a bowl, combine cream cheese and egg yolk. Stir together with Cheddar.

Add cooled sausage and cooled mushroom stems. Stir mixture together and refrigerate for a short time to firm up.

Smear mixture into the cavity of each mushroom, creating a sizable mound over the top.

Bake at 350 degrees for 20 to 25 minutes, or until golden brown.

Allow to cool at least ten minutes before serving; the stuffed mushrooms taste better when not piping hot.

　

Almond Pie Crust

Good for pie and cheesecake.

2 cups (heaping) almond meal (or pecans work too)
1/2 cup butter, melted, or 1/2 cup light olive oil
2/3 cup truvia/stevia/splenda to desired sweetness
1/2 teaspoon almond or vanilla extract
Dash of pie spice or cinnamon, if desired

Combine all of the ingredients to form a sticky dough. With moist fingertips, press the dough into a greased 9x12-inch baking pan or 2 8-inch glass pie plates. Bake the crust at 350 degrees F. for 20 minutes. Allow to cool completely before filling.

You can make any of your regular sugar free recipes of pumpkin, apple or cherry pies. You can get some sugar free pudding and whipped cream for a cream pie. You can even make a quiche with this crust.

Strawberry (blueberry, raspberry, peach) cream cheese cobbler
1/2 c. butter
1 egg, lightly beaten
1 c. Almond milk or half & Half
1 c. almond flour
1 c. sugar substutute
2 tsp baking powder
1/2 tsp salt
2 qts of which ever fruit
4 oz. cream cheese, cut in small pieces

Preheat oven to 350 F.

Melt butter & pour into a 9x13 baking dish. In a small bowl, mix egg, milk, flour, sugar, baking powder & salt. Pour over the butter, but do not stir. Add the berries & cream cheese Bake for 45 minutes, or until top is golden.

Next time...Holiday Cookies!

MLD Therapy and Wrapping - Part Two

By Christina Routon

I felt strange during my first treatment visit to Jodi, my therapist. It had nothing to do with her - it was all the stuff in my head. I was wearing a skirt, I felt self-conscious of how I looked, and I just didn't feel myself. I never really got over those feelings, but I learned to deal with them.

Remember - feelings aren't reality.

Jodi made me feel as comfortable as possible. As she massaged my legs, we talked about our families, our jobs, what we were doing for Halloween. I asked her questions about lipedema and the therapy. Of course, we had no idea what progress would be made, if any. I felt relaxed and completely at ease. She confirmed the lump on the side of my ankle was a lipoma. I never knew it had a name. It was just a lump that would sometimes swell if I'd been on my feet most of the day.

The massage lasted about forty-five minutes. I wore a loose pair of capri-length workout pants under my skirt. I was used to wearing hose couldn't go out without wearing something over my legs. I took them off and Jodi proceeded to wrap my legs for the first time.

She started by applying lotion. The room was chilly and the cream was cold. She smoothed it into my skin, then measured and cut a pair of knit stockings. These aren't actual stockings with silicone at the top to hold them up. They're basically a tube of knitted material that she cut to size. She slipped it over my leg and I helped pull it up to the thigh.

The next step was cotton padding. The cotton is between the stockings and the wraps so they won't harm the skin. So far so good. My legs grew warmer as they were covered.

I ended up with five wraps on each leg. I was wrapped from foot to thigh, the smallest wrap on my foot and the largest over my thigh. Jodi walked me through the wrapping procedure so I could fix them myself if they came loose and so that my husband could help me when he was home.

The wraps were tight, but not painful. Many women with lipedema have debilitating pain in their legs. It's so bad they can't bear to be touched. I'm thankful I don't have pain. My legs may ache at the end of the day, but they're not so painful I can't be touched.

When the wraps were finished I pulled my capri-length sweats over them, then straightened my skirt. Jodi helped me put on the shoes I'd brought, a pair of hospital boot type sandals with velcro fasteners. After the first day, I ended up mostly wearing my tennis shoes and kept the hospital sandals for home. I wore the wraps for two days, taking sponge baths and sleeping in them.

I spend the first week hating the wraps. The bandages around the thighs would slip, along with the stocking, and the material would bunch up around my knee. One day the right leg would fall, the next it would be the left. I felt as if I was in the restroom at work every few minutes, redoing the wraps. I sat at my desk as much as possible as moving around made them fall faster. By the second week of wrapping, Jodi cut two pieces of stretchy material called Tubi-Grip (I called it Turbo Grip!) to place around the top of the wraps. The Tubi-Grip helped everything stay up the way it was supposed to and I spent less time fixing falling wraps. I wished she'd given me some earlier.

I noticed a change in how my legs felt by the third day when I removed them to shower. The skin was much softer to the touch, most likely due to the lotion used and the heat generated by the wraps. I enjoyed how my skin felt so much I've continued using a moisturizing lotion on my legs daily.

I had an issue with my legs itching where the wraps bunched around my knee. Jodi used hydrocortisone cream around my knees to help combat the itching.

We measured after the first week. By then I was asking her about getting my compression hose. I was more than ready to stop wearing the wraps, and it had only been a week. We discussed waiting at least one more week to see how the measurements worked out.

The first week's results were amazing! Based on her measurements, I lost almost two liters of fluid in one week. My calves didn't seem to have changed much visually, but the measurements showed they did  lower. My skin was feeling better and there was a visible difference in my upper thighs.

Jodi compared my loss to a two-liter soda bottle, three-quarters full. I agreed to wait one more week before ordering the hose and we set up our next set of appointments.

Next week - Final Measurements, Getting the Hose, Dealing with Work, the Public, and Thoughts in my Head

Healing Energy

by Maggie McCarey

Three Lessons in Alternative Healing

My first experience of being healed with energy medicine transformed my thinking about healing and started me on a path of study that continues today.  In the mid 1990’s, I studied massage therapy in Vermont because weekly massages helped to keep me out of a full-force inflammatory episode. The medical profession might describe this as lipedema going in and out of remission.

I learned about a particular energy medicine modality, Cranial Sacral Therapy, during my course work in massage therapy school. Dr. John Upledger, who discovered that a cranial pulse exists, pioneered cranial Sacral Therapy.  It is referred to sometimes as the Breath of Life, or the center of our breathing.

     

The students in my class watched a 20-minute video on CS and were then partnered in twos.  I partnered with a 19 yr old who was not particularly engaged in our studies.  She went first.  She closed her eyes, held my arm and followed along my upper arm searching for something that might appear…a knowing, a hunch, a feeling.  When she got to a certain part, I burst into tears but felt nothing.  In the old stiff upper lip manner of my Brit heritage, I never showed emotion and yet here I was weeping.  

She dropped my arm and the minute she did, the tears stopped.  She picked my arm up again and tears streamed down my cheeks.  She dropped my arm a second time and magically the tears stopped.  I had experienced pain and, at times, limited motion in that exact spot of my upper arm for years but so what?  I was a tomboy paying for an adventurous childhood as my grandmother predicted.  I twisted my neck the third time she picked my arm and gentle held it slightly above the “spot.”  

I felt like a cork was being sucked out of my arm and then I saw a flash of light, like the old blue camera bulbs, blast against the inside of my partner’s hand.  She yelped and jumped back as my brain swiftly and accurately played back a complete memory of the death and funeral of my best friend who was struck by lightening 27 years earlier.  The tears stopped; that pain in my arm left forever.  In CS, this is called an energy cyst, which occurs when we experience any kind of trauma, physical or emotionally. 

I was hooked. I had to learn everything I could about healing.  I took several courses in cranial therapy, a personal internship with a brilliant Upledger structuralist, John, in Montreal, course work in reiki, sound vibration, bio-sonic repatterning, and polarity.  If that seems like a lot of energy study, let me tell you over 160 kinds of energy medicine are being studied and practiced all over the world.

So what does this have to do with lipedema?  So many of our lipese complain of having no energy, years even of intense fatigue.  I have had those bouts with fatigue as well, and I know of no way to move through that fatigue without energy work. Energy medicine moves to release the blocks that underlie and govern patterns of chronic pain, disease, trauma, and even accidents.  During the years that I faithfully received cranial sacral treatments, my body changed from a painful, stiff drag-a-long to a body that could hike and climb mountains for hours painlessly and with ease.  I parked far away from stores just so I could walk.  I walked for hours and ran up down escalators in airports while waiting for delayed planes. Amazingly, I was the most fit and the least pained I had ever been, even in childhood.  I was 48 and in charge of my body for the first time.

CS has been a way of survival when conventional methods failed.  A decade ago, my Woody dog took off after a squirrel just as I stepped onto a curb and I felt my ankle snap.  My sister, thankfully, was visiting with me in Vermont. She had become a CS therapist after years of physical pain was lifted when, during a session, her long held childhood memory of her dog’s death left her body.  She quickly bent over where I lay on the ground wailing and thrashing.  She did something called “unwinding.”  When a person falls, his or her energy field immediately fights that motion, and tangles up like twisted wire.  A good therapist can actually get a body to unwind like a clock and in ways you have never seen a body shaped.

I literally felt the energy unwind as she worked.  Heat and pain left my body.  I walked home with no trouble.   I was terrified to have a broken ankle because of what that would mean to me, as I got older so I went to ER the next day.  Indeed, my ankle was broken but, and I will never forget the look of disgust on the ER doctor’s face when he told me, there was no orthopedic devise big enough to reach around my calf and it couldn't be set any other way because of my leg size and the fat around my ankles.  I was then a 12 on top.  I walked to my car by myself, without crutches, drove to a shoe store, and purchased a leather mountain boot that went well above the ankle.  I laced it up and tightened it around my ankle like an orthopedic walking cast, and went on my way.  I have never had a twinge of pain in that ankle.

  

Lesson Two. I am sure you have heard when a student is ready, a teacher will come. Traditionally, in healing studies people intern from masters who most often are very spiritual rather then theoretical.  When I needed to know about herbs, the Amish woman came. She helped me to stop the inflammation cascade I described previously, but I was still chronically inflamed, in pain, and afraid of my body.  It was hard to walk and to breathe.  I was tired.  Even so, the student in me never stopped believing there was a way out of my illness, and so another teacher came.   She was the Grandmother of the Abenaki Nation.  In native way, she had expected me to arrive at her door one day and I did.  The three years I was her student she began each session with the following words.  “Never give your power away to anyone or anything.”

Perhaps, her words would have had less effect on me had I known her before she became ill many years before.  When I met her, she had contracted a virus in her lungs that caused her to almost drown in her own mucous many times a day.  She lay most days in a hospital bed while people from all over the world, and from every walk of life, came to visit her, to be healed, and to pay homage to this great teacher.  Grandmother never charged anyone for her instruction or her healing.  She lived only on the gifts she received from students. Her lesson learned: Never give your power over to lipedema.

Finally, the third teacher who came to heal me, was the Upledger structuralist John who lives in Montreal.  He literally rebuilt my energy field, and restored my life force,  but more importantly, he mended my wounded soul by speaking to it rather than me about how to facilitate healing in my body.

     

Everyone suffers.  Everyone either sooner or later gets a disease or a tragic and sudden death.  This final chapter has never been a surprise ending to any of us but John made me understand the power I have over my physical body in the meantime.  Not that I will ever dance again—even so, I must believe it is possible.  That is finally the last lesson in healing:  If you believe yet will you see. To see ourselves healed we must live ultimately in perpetual hope that our lives are exactly as they are meant to be each moment or as the composer wrote: Let this blessed assurance control…It is Well with My Soul.

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.

 

 

Liposuction as a medical treatment

By Tatjana van der Krabben

Liposuction can be applied as a medical treatment. I’m not referring to treatment of psychological issues, but liposuction as a surgery to help improve a physical condition called lipedema. I speak from experience: I’ve had four treatments. Why four? What has been treated extends well beyond the usual bikini issues treated with liposuction. I was treated section by section. The aim of these treatments is to have fat removed that will not budge when on a diet. In fact, I’m done with diets as such. My adapted food regime is a lifestyle. Like with diabetes, lipedema requires a permanently adapted food regime to keep the condition in check. The excess fat on the legs and quite often also the arms causes pain and discomfort. As we grow in size, the pain increases and mobility decreases. Removing fat takes away from the pain and discomfort and enhances mobility.

This sounds very straightforward, but there’s a catch: liposuction is not a cure, it doesn’t tackle any causes. Afterwards you could still gain. Also, it’s usually not reimbursed by insurance companies and doctors are mostly unfamiliar with this option and won’t refer. Lipedema is therefore in relatively few cases treated with liposuction. The option is more available in Europe, mostly Germany, where quite a few plastic surgeons and dermatologists perform liposuction on lipedema patients.

There’s one more catch: generally you get your treatment in the private sector at your own initiative. It’s easy to get caught up in glossy websites and luring advertisements that promise ‘easy, little invasive liposculpture’ or something. Wrong: It’s not easy, it’s invasive and it’s surgery. The lack of knowledge regarding this option, both with respect to its existence and what it entices, has prompted me to approach the media. The Dutch magazine Libelle (issue 46, 2012) has featured a  story regarding my experiences after my first liposuction. Below you find a translation of the article.

Note: since the article doesn’t feature pictures or any other images no scan of the original article was added. Also, I came well prepared for this surgery and expected pain, the secretion from the cuts and swelling. The surgeon send me home with stronger pain medication just in case, yet actually experiencing it was something else. For informative purposes the article contains more question marks than I actually had in the moment.


The day after….I had liposuction
Tatjana (39): “It’s 9.15 when the surgeon’s phone call wakes me up. He wants to know how I feel after the liposuction treatment I underwent yesterday. I feel horrible, did not anticipate to be in this much pain. I tell him and explain the compression pantyhose I’m wearing is soaked with blood and fluid. Fourteen small cuts were made in my legs and they are still secreting fluid. He recommends painkillers he gave me. He explains the oozing is normal, but I can shower, provided I don’t take off the pantyhose. My husband assists me when showering and is feels great to rinse my body. Afterwards I blow dry the pantyhose: a hint the surgeon gave me. Next I get back into bed. My legs are stiff and sore and I have trouble bending my knees. I kill time reading and chatting on my laptop. I also call my mother, who’s taking care of my children today. I don’t want them to see me this way. My mother offers to take them one more night and I’m grateful for the offer. I look at my upper legs. I know it will take weeks before the worst of the swelling is gone and before I’ll be able to tell if the surgery was a success, but I can’t resist looking at my legs. I want the surgery to be a success so bad, to regain mobility and be rid of that continuous pain in my legs. It scares me that my legs now look worse than ever before and cause me more pain than ever before. Stories of failed surgeries I read about online shoot through my head. But something had to be done.

During my first pregnancy I gained 23 kilograms. The last trimester I could barely walk because of the pain in my legs. I thought it would be over after the pregnancy, but after giving birth I lost weight everywhere but on my legs. Lipedema, my physiotherapist concluded, a hereditary condition that aggravates under the influence of hormonal changes. After my second pregnancy it became even worse. My upper body was two sizes smaller than my lower body. I could only walk short stretches and it was hard for to me to take care of my children. That was my biggest motivation to see this surgery through: I just wanted to be there for my kids. It’s 16.00 already. I hardly ate anything. My husband asks if I feel like having sushi, he knows how much I love that. ‘Yes please’, I say. I check my legs again and notice the oozing has thankfully stopped. I find it hard to accept it will take weeks to learn more about the result, but I will just have to accept that. By 9 p.m. I go back to sleep, I’m exhausted. I can only hope for a good outcome. In the end I will need two more surgeries to  get my legs in better shape. But my life will get better. In a year I will be able to do my own housework again, take on activities with the kids and exercising becomes easier. My legs will be much thinner and my new shape makes it much easier to shop for clothes.”