Maggie has left the building

By Tatjana van der Krabben

In 2013 co-writer and co-blogger Maggie McCarey and I finally met in person. We only got to spend a day and a half together, but we seemingly manipulated time and made at least a week’s worth of memories. She taught me about the rich history of both the Stockade Historic District, Schenectady, NY and her precious mountains where she had a lovely little house, introduced me to her family, gave me a tour around Amish country and introduced me to an Amish friend, and we even found time to relax on a bench on the banks of the Mohawk River, while looking out for otters. In the meantime ideas were flying around and we discussed the potential of a clinic specialized in treating lipedema that someone suggested to set up with us. Just like that.

That is how I will remember her: a warm personality, a big heart, a creative mind, unafraid of dreaming, embracing life. Mindful of the past, the present and the future.

LIPESE was Maggie’s brain child. The lipedema handbook, the blog, the Facebook support group: she was the driving force behind our every effort. She counseled countless people behind the scenes, advocated for several men with suspected lipedema who have an even harder time obtaining diagnosis and adequate help. But one facet of her versatile legacy can be found in her brutally honest and detailed blog posts in which she shared a wealth of knowledge and experience regarding her journey with lipedema.

Maggie, it has been an honor being your friend and working with you. You will be missed.

Maggie has passed on peacefully, but all too soon, on July 30, 2018.

The Summer My Elm Trees Died

by Maggie McCarey

    In a few days, our summer’s end party will fill our garden and the street beyond with live music, dancing, and firelight. The friends of individual family members, forever friends and new friends, from every generation, will come together to celebrate this less than stellar season of fertility and abundance. This will  be the last year that my two elm trees will be with us for this celebration. They are dying. They have stretched over our garden, intertwined and misshapen, since we moved here 15 tears ago. They have protected four generations of my kin living below them. Known as Isis and Osiris in our neighborhood, they cleave, the branch of one supporting the other faithfully until  they have created a celtic love knot so intricate that no human could trace where one begins and the other ends. Their roots are visible 2 or 3 feet above ground, and twisted together like weaver’s filament, knotted and secure, stronger united against city life.

    Their roots bear the stripes and scars of living in a finite world. This is life. But, the horror of their passing needlessly now is the horror of my life, too. Watching them drop pale yellow leaves to the ground at the slightest touch of wind or breath is so reminiscent of lipedema pain at the slightest touch or bend of the leg. They are dying of Dutch Elm Disease (DED). DED was first named in 1910 when it ravaged the forests of Holland. It is estimated that a million elms have died in Britain alone, and there are only 8,000 left in the USA. “No cure.” My elms are dying this summer because there is no cure for DED. Drones have been invented, as have sophisticated weapons systems that can hit a village from a target on a screen, and a spaceship is being readied to explore the heavens for a new planet capable of sustaining human life.  But no aggressive plan is in place to save my elms from being toppled by a beetle in one season. 

     Lack of interest. That’s what the elm trees are dying of. Even the cause is known. When their immune system recognizes that their outer layer is breached, elms send out too much protective sap to protect their inner core. Beetles don’t actually do them in. Fungus rides in through the sap and gains entrance to the inner chambers: the root system.  Spaceships, manned by fungus, looking for a hospitable environment to ravage as long as it can survive before finding another host is what they are dying of.  And I am sick caused by lack of interest as well. That’s what my daughter, who drags her leg the way I did before I could no longer walk, is dying of. That’s what my granddaughter who has been on strenuous diets since third grade to save her from lipedema is dying of. And, that’s what my two great grandchildren, who are already allergic to the food that will be foisted upon them against our will, are also already dying of….and, of course, that’s what many generations of women have already died from. Lack of interest.

     There is good news. Some trees survive. Those who are invaded in late summer when dormancy protects them from starving to death can live. Not all of you will lose your mobility. Some of you will lumber and some of you will dance to the finish line.  Better news would be a systemic approach to curing DED (and lipedema). No finish line.  Best news would be  the appearance of a metaphor so illuminating that trees and women would have their rightful place in the world’s esteem.

        Yesterday was my birthday.  Instead of a new outfit on my special day, I bought a “festive”  transport mobility chair so that my family would be less encumbered by my illness at the Saratoga races among thousands of people on foot.  Ah, the fallen matriarch.  How I fight the demons to create lasting memories with my tribe. I walked so tall and covered my insecurities with a head held high, big legs and all, as long as I could walk.  Now, I face them without the comfort of illusion, others or mine.  

     My daughter, Stefanie’s legacy to the world is sheltering lost and unwanted children beneath her wing. She brought Estelle into our family last year. Estelle and I have the same  birthday so I shared mine with her.  Her first horse race was at the fence, and she won big every race! She stopped in to see me today. At one point, Estelle said, “This was the best birthday of my life.”

    I said, “It was one of my worst. It is difficult to be the one in the wheel chair. ” (Ignore my leaves falling pale and yellow around my body.)

     “Are you kidding, Grams? You just pulled yourself right up from the fence and stood for every race with the rest of us.  That’s what I will always remember about you yesterday. That’s what I am going to do, too, when I am old.”  Ha, there it was, that wonderful inevitable ray of light.  I still have value as do my elms who might be giving us clues to how we need to slow down lipedema. The circle of life trumped lipedema. I and my trees still have value and purpose regardless of our circumstances.  Next Saturday, when people celebrate summer, the elms and I will be among them, blessed in this season to have one last summer together.

     A footnote: I read this blog to my husband last night and it gave him the freedom to talk about how bothered he was by the chair at Saratoga, a conversation he would never have initiated. He said: I am so used to you being by my side, I missed you. “But,“I have figured out a solution.  The next time we go to Saratoga, I am going to ride in a wheel chair next to you.”

     I snickered. “Who is going to push you?”

     He waved my comment away. “I don’t care how it happens. We will hire someone. But that’s how it's going down.”
 

                   Isis and Osiris

Lipedema Sister Laura Deese Reaches Out

by Christina Routon

Laura Deese, a fellow Lipedema sister, has reached out to lipese.com through our Twitter page. She's also reached out to her local community by sharing her story with Channel 5, WNEM, near her home in Iosco County, MI. You can see the story reported by WNEM here:

WNEM TV 5 Laura Deese

It took Laura 14 years to discover she had lymphedema and she was recently diagnosed with lipedema last November.

I'm going to be contacted churches in Laura's area of Iosco County, Michigan, to see if anyone is able to help widen her door and possibly has a doctor in the congregation that would be willing to be her primary care physician. I'm also going to include some information about lipedema and lymphedema when I contact them.

If anyone is near Laura in Michigan and can offer help, you can contact the TV station at wnem@wnem.com or call them at 989-758-2044.

This is a disorder that we keep hidden for many reasons, including embarrassment, judgement, and fat bias. Laura is very brave to reach out on television and social media to ask for help, especially when the disorder reaches the later stages. Let's let her know how much we care about her.

Lipedema and me

By Sylvie Giroux

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

________________________________________________________
Read more by following the links in our Lipedema Awareness Blog Hop

Lipedema in the world

By Tatjana van der Krabben


The theme "Lipedema in the world", to me, is living my life in such a way that the lipedema doesn't own me. I only have so much energy to burn in a day. Certainly true. Sometimes the thought that something will cause my legs to hurt can make it tempting to pass. It's a balancing act, where I sometimes push on, because the very thing that may cost you energy, could also give you some energy.

Like last November. We had one day only to gather up all the ladies to do a short info & awareness film on lipedema. That's ambitious and we needed ALL day. Yet, we all had a fabulous day and as you can see in the image from the opening scene, we had so much fun.

By the end of the day I looked something like this. Not too bad, right?

It took me five days to recuperate. My body was unwilling to accept that I had pushed myself so hard, well beyond my limits. However, in my mind I still felt like a million bucks. That's what you see in this picture. So, all I can say is that it was totally worth it! Both for the cause and for me personally.

How about 'city trip' and 'theme park'? It pretty much equals sore legs. Still, I wouldn't want to miss it. Last year I had a great time in New York and Disneyland Paris.

 

To me, a city trip is about making choices. It's like every day life: you pick the things you really want or need doing and leave the rest for another time. Of course that sounds quite all right when you refer to doing the laundry versus making the beds. It's different when you're planning something fun. Luckily, there are many ways to work around it. I used to walk throughout the day. Now I take a taxi more often, but you could also try a bus or boat tour to see some sights without pushing yourself too hard. I also plan my route more carefully to avoid detours. If I really don't feel like making choices, I save up a little longer and plan an extended trip. With a little help or creative thinking you can still cover a lot of ground.

Theme parks are even more of problem, because beside all the walking you also need to plan your meals. After all, they mostly offer junkfood, which makes my legs ache even more. Last year, I brought quite the survival kit of homemade gluten-free and sugar-free carrot muffins, nuts and homemade kale chips, among other. That covered most of the lunches and snacks. For dinner we went to a buffet style restaurant. Normally I tend to avoid those; the endless queuing and the kids getting all restless from other kids running around usually annoys me. However, this type of restaurant is a perfect solution to a menu problem. Instead of explaining what you can't have and try to persuade them to make alterations to their fixed menu, you simply pass those items by at the buffet and pick what you do want. If it wasn't for those darn tasty croissants at the breakfast buffet, I would have gotten by on my best behaviour!

I have quite active hobbies: snorkeling and looking for fossils. A fossil hunt is not really agreeable to the legs, I'm afraid, but, again, I wouldn't want to miss it! I used to go to a site 45 minutes by car from where I live. I had to dig and sieve the sand in my makeshift

soil sieve with just the right size mesh to catch what has my fancy. Pretty heavy and hard work, but I use a manageable little garden shovel and mostly sit down when sieving the material. Like that I could keep going for several hours! It clears your head and there's that treasure hunt vibe. Too bad that site is closed now. Last year I went to a particular stretch of beach for my fossil shark teeth fix. We made it a family day trip. It was great. I hope to repeat it this spring and find me some teeth, of course! I've got some serious withdrawal symptoms here.

Of all the things that I love to do, snorkeling is the only thing that is actually good for my legs. I travel to tropical places, whenever I get the chance and take a dip, always on the look out for something I've never seen before or something funky like a shark or moray. Tropical places come with tropical heat, but provided I take a good swim twice a day, I sail through almost effortlessly. It being a hobby, going in twice a day is easy! Especially now that the kids are no longer toddlers you need to watch like a hawk near any water.

I love the beach. The breeze and the water on my skin, sand between my toes, a good book... It's my little slice of heaven. Even when parading around in a bathing suit for anyone to see, yes. At some point I got tired of fussing with a pareo or tunic. It does help that the people in the places I visited the last couple of years are quite appreciative of curves. I'm the pale one that sort of fits in. Thanks to that I became my own standard again after a while and stopped worrying about other people. A sauna, the beach at home, the pool: I'm now fine with all of it. The best souvenir I ever picked up on my travels!

Taking Care of Us

By Christina Routon

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

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

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

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

Worst case scenario:

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

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

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

So what can you do to take care of yourself?

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

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

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

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

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

Creation and manifestation of healing

By Sylvie Giroux

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

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

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

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

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

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

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

Primary Penny

By Maggie McCarey

                                                Doctor: KNOCK! KNOCK!

                                                Patient: WHOSE THERE?

                                                Doctor: HEPA

                                                Patient:  HEPA WHO?

                                                Doctor: Sorry, I can’t tell you.

                                                PATIENT: But I can.

A VERBATIM with MY PRIMARY June 12, 2013

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

HERE GOES

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

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

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

Maggie: No becau…

Primary Penny:  Why not?

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

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

Maggie: Right. It is still normal.

Primary Penny:  And how do you know that?

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

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

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

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

Maggie: Like cholesterol.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

                                        AND THERE YA’ GO

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

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

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

Maggie:  Yes ma’m.  (progress)

Oral History, Medical Research and Grassroots Participation in Finding a Cure for Lipedema

by Maggie McCarey

When we fall into lipedema hell where signs on the wall say “do not expect a solution, do not expect a cure, and do not try to escape,” we immediately need a crash course in lipedema vernacular.  Unfortunately, because the medical profession signed off on us as incurable before one clinical trial was completed (and if you don’t count individual case studies, one has yet to begin), we depend, share, and believe in a knowledge base riddled with assumptions. We do not even know what lipedema means before we join forums where the only real advice we receive comes from shared information collected via articles written by doctors synthesizing other articles that evolved also from even earlier articles. We then share this blend of experience and information orally among forum members as if it were the truth, and we pass it on as truth as well. In this way, we who have discovered lipedema perpetuate the bad medicine that keeps us from finding solutions.

     While I am not an expert in the medical field, I am a college professor who taught research and I am an expert on oral tradition, fact, inference and opinion. That women on forums learn to parrot information about lipedema without questioning its scientific basis or logical reasoning is a fact. Consequently, our forums are often unwitting promoters of a belief system based on oral tradition rather than a factual foundation upon which to build a cure. Sadly, as with all belief systems, leaders emerge to keep the fixed system up and running to the determent of visionaries who threaten change or, in our case, cures, if the leaders cannot retain control. Groupthink always creates leaders who hand pick their team members. The leaders’ job is to destabilize the creative process in order to maintain a specific belief in a closed system.  This is survival of the fittest. Conquerors win and the conquered either assimilate or are driven away.  It is the way of history. It is the way of groups. It is the way of all worthwhile struggles that aim to serve humanity with purity of motive.

     Proper medical research is very specific in its components and has nothing to do with power or entrenchment.  It is always evolving as information brings the possibility of a  hypotheses or idea to grow the science of a disease.  The logic of the medical research article also defines the necessary components of research:

As do all forms of science, medical theories have a factual as well as a logical basis. New information is presented in medical research articles. These papers have three separate arguments: the argument of the hypothesis, the argument of the experimental protocol, and the argument of the hypothesis's judgment. These arguments may be examples of the hypothetico-deductive or confirmational model of scientific interference. The logical form of these arguments is informal and inductive rather than formal and deductive. Understanding the nature of the logic of the medical research article may help avoid erroneous conclusions.

(Velanovich, L. www.ncbi.nlm.nih.gov/pubmed/8259532‎

      So far, lipedema research is a two-legged stool trying to strike a theoretical balance without a third leg - the argument of the experimental protocol (laboratory research).  Without the experimental protocol, researchers have no means of self-correcting or making progress towards a cure.  Every doctor I read, unfortunately, has looked at lipedema and hypothesized astraddle the two-legged stool of incurable. This hypothetical judgment, the third argument of medical reasoning, is reached without empirical research and has been passed from one medical generation to the next based primarily on case studies that confused and interposed Dercum’s disease (1892) and lipedema for half a century before Allen and Hines differentiated lipedema from Dercum’s disease in 1941 and that conclusion determined by one patient history.  The medical community has thus had 211 years littered with relentless misogyny to come up with something besides fat to describe lipedema. “Do not expect a solution, do not expect a cure, and do not try to escape.”

     Before we take their collective lack of interest personally I would remind you of the history of the hysterectomy.

            Vaginal hysterectomy dates back to ancient times. The procedure was performed by Soranus of Ephesus 120 years after the birth of Christ, and the many reports of its use in the middle ages were nearly always for the extirpation of an inverted uterus and the patients rarely survived. The early hysterectomies were fraught with hazard and the patients usually died of haemorrhage, peritonitis, and exhaustion. Early procedures were performed without anaesthesia with a mortality of about 70%, mainly due to sepsis from leaving a long ligature to encourage the drainage of pus. Thomas Keith from Scotland realized the danger of this practice and merely cauterized the cervical stump and allowed it to fall internally, thereby bringing the mortality down to about 8%. (C Hutton.  Hysterectomy: A Historical Perspective. www.ncbi.nlm.nih.gov/pubmed/915593300)

Truly, lipedema is in its infancy.  We are at the start of our campaign and most of us will not reach the land of itty-bitty skirts and knee high boots in this lifetime.  Our place in the history of lipedema is likely to be judged on how well we engage the medical community in our struggle, not on how well we harangue doctors to produce immediate solutions they don’t have.  Rather, this first generation will be known for its success or failure by its ability to create a sisterhood with one unified goal: a lipedema cure.  No leaders.  No followers. No ego. No names but one. YANA.

    George Milbery Gould (1848-1922) was a physician, lexicographer, and  the first president of the Association of Medical Librarians (now the Medical Library Association.  In 1903, he addressed the issue of medical discoveries. He wrote in the preface of an abstract titled Medical Discoveries by the Non-Medical:

I have been struck by the fact that the majority of great medical discoveries, truths and instruments, have not been made completely and suddenly, but have been led up to by preliminary and progressive steps, and that the layman has so often made these discoveries prior to the medical practitioner. This great medical truth is, indeed, but an illustration of the general law that all professional progress, in whatever branch of study, is somehow or other a result of stimulus from without. There is so much interest, and there are so many lessons to be drawn from such observations in medical history, that I have in late years kept minutes of this class of truths, from which I make the following selections.

                                                                (Journal of American Medical Association. 903;XL(22):1477-                                                                                                             1487. doi:10.1001/jama.1903.92490220001001)

And what example might Gould been thinking of? How about 18th-century poet, chemist and inventor Humphry Davy who was also an alcoholic and drug addict?  One day Davy found himself with a raging toothache. He sucked on a little nitrous and his tooth pain went away.  At the end of his paper Researches, Chemical and Philosophical; Chiefly Concerning Nitrous Oxide, Davy offered one line suggesting the gas could be used for painless surgeries.  At that time doctors believed that pain aided the healing process.  Forty years later, some medical researcher tried Davy’s solution and the rest was……well, you know…history.  Tally-ho

Summertime Blues

We're heading into warm weather in the United States and for those of us with Lipedema it usually means more of the same - staying bundled and hot in slacks and jeans and sleeves while everyone else - in our eyes, at least - is comfortable in shorts and cute summer dresses.

I was diagnosed with Lipedema last June, and I promised myself it would be the last summer I would be standing on the shore in jeans while the rest of my family enjoyed themselves on the lake. It would be the last summer I stayed far, far away from the swimming pool and it would be the last summer I continued to wear the same clothes and fabrics I always wore. This summer would be different.

I asked the helpful Facebook group, Lipedema Sisters USA, how they planned to stay comfortable this summer as well. Their top pick for comfortable clothes - maxi dresses.

http://thequeenbuzz.com/dee-buzz/spring-break-essentials

A maxi dress hides your legs and can be worn to work, out to dinner or to a casual summer party. I have a couple of long sleeveless dresses that I'll be pairing up with a light sweater for indoor days when the AC gets too cold. You can wear a maxi dress bare legged, but I have an issue with skin chafing, even when wearing my compression hose. A long time ago I figured out I needed something on my legs, even when wearing a long dress, so I started wearing cotton workout shorts, either thigh-length or capri-length. They keep my legs from chafing and make me more comfortable.

I don't want to wear my compression hose this summer, but I know I need to in order to keep my legs healthy and keep swelling down. But instead of my usual full set, I'm buying a pair of footless compression hose in a lower level of compression. This way I'm still using compression, I can wear sandals or go barefoot, and the hose won't be nearly as hot when I'm outside.

Another option is to pair a short summer dress with a pair of palazzo pants or capris and wear the dress as a

http://www.etsy.com/listing/124528990/anna-linen-wide-leg-white-pants

tunic top, or wear it with a pair of colored matte tights to cover your legs.

Whenever possible, wear clothes made with fabrics such as cotton, linen or silk. Nylon and polyester can help protect you from the sun, but another option is to use a product such as RIT Sun Guard to temporarily add sun protection to your cotton or linen clothes.

Swimming is a summer staple, but for many of us with Lipedema and / or lymphadema, going to a public pool in a swimsuit is like going to the dentist for a root canal. And those suits with the little skirts - they're pretty much a joke when it comes to covering our legs.

http://www.swimoutlet.com/product_p/8819.htm

Since I plan to go swimming a few times this year, I'll be buying a set of swim pants from Splashgear. These look like long sweatpants, but the fabric they're made from doesn't cling to your body - a quick shake and they straighten out - and they dry quickly. Another option is a pair of long board shorts to cover your thighs. This company can even custom make board shorts up to size 3x.

I hope all of you make the decision to get off the sidelines this summer. Do whatever you need to do in order to feel comfortable - that's what I'm doing by buying the swim pants - and take part in an activity you've enjoyed in the past or one that sounds interesting. Make the choice to LIVE your life and refuse to let Lipedema control what you do or where you go.

Stay safe, wear your sunscreen, drink plenty of water and have fun!

What are you planning to do this summer?

Food - Part 1 - Grassfed and Pastured Beef

by Molly M Peterson

Molly M. Peterson is a photographer, farmer and advocate of causes close to her heart living in rural Virginia. You can read more about her at www.mollympeterson.com and follow her on Facebook at www.facebook.com/mmp.documentinglife . 

________________________________________________________________________________

I have Lipedema. I’ve written about it {here}, {here} and {here}. I’m a part of a beautiful support group of women on Facebook who also have Lipedema (or Lipoedema depending on where you live) and often I find myself responding to the food questions and comments that I can address easily because of the life my husband and I lead as grassfed/grass-based/pastured farmers in the countryside of Virginia. Apparently I post often enough that I’m even tagged to answer a question I hadn’t yet commented on and then I was approached to write an overview on food: specifically the topics I usually talk about: organic, pastured/grassfed, and locally sourced foods.

This is topic is vast so I’ll post more and this will be the first one: Grassfed/Pastured Meats.

I will stick mostly on the surface for sake of time and I will be happy to elaborate on specific requests if I am able. I also encourage you to do a little research, but I will warn you, it is like the layers of an onion, only you can decide how deep into the onion you want to go and how many layers to the food system you want to peel back and expose.  Only you can decide how to best fit your budget but I’m here to help if you need it. And only you can know what resonates with your body for it’s optimal health. I can tell you that now that I have peeled these layers back, I’m never going back. Knowledge is power. I have resources to help you start {here}. You can also read about it on my {Farm} page on this site.

So… here goes.

What does it mean and why does it matter to buy “Grassfed” or “Pastured” meats?

Most of the animals raised in the United States  for human meat protein consumption– I’m not sure about other countries — are “finished” in feedlots on a diet of corn, soy and certain by-products (of what, you probably don’t want to know). If they are cattle, it’s likely they were raised on a “Cow Calf” farm and were likely raised on grass for a bit of their lives, they may have also eaten grain at the original farm, and then sold at an auction and moved to the feedlot where they were fattened by the grain mixture in a short period of time. While on the feedlot [Google "feedlot photos" if you'd like a visual] they were likely given antibiotics (this might have even started at the original farm mixed in with minerals and/or feed – a common practice) not because they were sick necessarily but because they needed to be kept “healthy” until slaughter. Not exactly my personal preference for preventative maintenance of health. Now, many things play in to this use of antibiotics: this promotes antibiotic resistance (hello superbugs that can do lots of damage to animals and humans! Look up Russ Kremmer from the movie Fresh.) these animals are not being fed a diet that is natural to them so they’re susceptible to illness, where/how they live affects their bodies and their emotional being (yes, cows have emotions…just like us) become stressed, and they live in mass mono-cultures with little room to move around (if they aren’t moving, they aren’t burning calories but instead gaining weight faster!) and live as their species was designed to live able to walk and graze at will. It’s a little different with dairy cattle but I’m not going to delve too deep in to that one at this point in time. If you’re really truly interested in the lives of commercial dairy cows, I really enjoyed the book Portrait of a Burger as a Young Calf (male dairy cows have to go somewhere – they can’t produce milk!). {Antibiotic article}

Side Story: I remember going to a 4H fair a couple of years ago with so many steers that were just around a year old and at the fair they are then sold at an auction so the kids bathe them and fluff them up and proudly walk them around to hope for the biggest sale to prove they had done a good job raising that animals.  But what saddened my heart is that they were HUGE. They had lots of fat covering, they were tall and they could hardly walk: stiff, bulky, slow. I was shocked. I compared them to our steers at the same age and even the same breed and mine were half the size and weight. And my heart sunk: THIS is what Americans look like now. THIS was heart disease and obesity. As the cattle have grown so have we.

Still with me?

A cow/bovine/steer/calf/bull/heifer is an herbivore (pigs and chickens are omnivores). Their systems are made to digest grasses. They are not made to consume corn and soy and by-products; when they do to excess, it creates dis-ease in the body and sicknesses can be more prevalent. But Americans like their fat marbled beef and Americans sure do like to eat and they like it now and they like it cheap: this has created our current food system. And I have even touched on subsidies or GMOs (genetically modified organisms). (more text below photo)

Now think about it this way. If an animal is sick or not at optimal health when it is slaughtered and processed into cuts of meat to then be consumed by a human being, that meat isn’t suddenly magically turned in to a healthy product to consume.  It is what it is. It’s a transfer of energy.

So when the terms “humane” and “holistic” and “grassfed/pastured” are recently being put out there, it’s because people are starting to realize and demand differently. People are becoming aware of that connection between the health of the animal and the energy that goes in to their own body. Energy is energy; it just shows up in different forms: be it something we can touch or feel like food or something intangible like love or fear or sadness.

There are numerous articles out there about the health benefits of grassfed meats (yay for Google! or you can click {here}, too). And just because it says “Grassfed” does not necessarily mean that it was not “finished” (fattened) on grain. That’s one of the newest marketing ploys because those that market are catching on to what people are beginning to demand. If true 100% grassfed and grass-finished meats are important to you then you need to source from a farmer or connect with a retailer (small, independent businesses are usually the best) and ask the questions. If you’re in the United States you can check with www.eatwild.com for a great resource base or even email me and I’ll help you look. Connecting with a farmer is actually really fun; it may cost you more (yes, the true cost of food costs more) and it might be slightly less convenient but you’ll make up for it in the health of what you choose to consume, and the pride you have in knowing that your support of a local farmer goes far beyond an exchange of a few green pieces of paper (or plastic if that’s what you prefer).

Grassfed does taste a little differently than what you’d be used to in a traditional “beef” taste in the US. This is because there are many factors that determine taste: the terroir,for one, are the grasses, the soils, the water source of the land where the beef was raised, and the lifestyle and wait it was treated. 100% grassfed beef raised in Virginia will not taste the same as one raised in California. It’s comparable to wine that way. Grassfed is also less fatty than a corn fed beef but here’s the kicker: the fat that is on grassfed beef is actually — wait for it —- healthier for you. Our bodies need fats but good fats. Red meat gets a bad rep but, really, in my opinion, it’s not the red meat, it’s what the red meat consumed and how it was treated before becoming red meat. As a farmer who raises meat I do agree that this country eats too much meat; instead I encourage, if you’re going to do it, make it good meat. Meat that was raised with love and respect and the best intentions of health.

“You are what you eat eats too.”

- Michael Pollan.

Do the research. Dig a little deeper. Go back to basics. Go back to before Man decided he could grow something faster and cheaper; did anyone else notice that then we all got fatter and sicker when that happened?

See the connection?

#RealFood

For a great grassfed article please visit: http://organicconnectmag.com/wp/the-ancient-roots-grass-fed-beef/#.USobp-hva8F

Photos taken at www.mountvernongrassfed.com

Giving up Grains

by Sylvie from Lipedemic Me

First, I need to say that because of the magic of the Internet and of, yes, Facebook, I met many wonderful ladies suffering from Lipoedema from all over the world!

We have support groups on Facebook, some of these women have websites, blogs and we are building up a strong community!

On the Lipese website...the idea came of starting a Lifestyle Challenge, which is all about making some changes in our eating habits, exercising, experimenting with supplements, treatments, etc...that can be resumed in 3 words: MANAGING OUR LIPOEDEMA.

My own personal changes started in November 2012, when I decided to go wheat and sugar free. Thought I would go nuts and end up like "Grumpy" but hey, was I in for a surprise!! I lost 10 pounds in a month!! Of course I had withdrawal symptoms: diarrhea, headaches, abdominal cramps but I persisted and now if I have something sweet I go "NAH!...this is WAY too sweet". Never thought I would pronounce this words in my sweet teeth's life! 

My January challenge was to give up all grains!! At this point, in time, I no LONGER have bowel issues, no more loose stools, no more massive abdominal cramps. I had all of these even before giving of wheat!

I exercise 3 times a week too. And jog on my mini-trampoline. So far, this month, I have lost another 4 pounds. My non-lipedemic fat is melting!!

I also go to me MLD treatment once a week and do regular SLD!  

I'm really proud of myself! Never thought I would have the determination to do all of this.

My First Whole 30 - Week 2

By Christina Routon

Moving into week two of our January Lifestyle Challenge, I'm feeling the rush of energy described in the Whole 30 timeline. I've been following along with others in the forums there, and we're almost all experiencing the same thing, although I haven't had any food dreams yet.

The second week was easier in that I wasn't as hungry as I'd been the first week, although I'm still missing my gluten-free pancakes. I really wanted a quick and easy dinner on Friday night and that would have been wonderful. Instead I raided the fridge for some vegetables, mixed up another batch of homemade mayo from Nom Nom Paleo's recipe, and made some chicken salad. The prep work has been easier as well since I've started sticking to basic recipes and asked my husband to help with the chopping, browning meat, and the clean up.

My favorite foods so far come from Melissa Joulwan's cookbook Well Fed. They are Jicama home fries and chocolate chili. I'm making the jicama again this week, I can't seem to get enough.

I added two more things last week - get eight hours of sleep and exercise three times a week. So far, I haven't been consistent with either, although going to bed by 10:30 is difficult, especially when my husband gets home from work after nine. It's difficult to stop a conversation and go to bed, but I know it's important for my health.

I've been reading some interesting information about Omega 3 & Omega 6 fats and I'll be sharing that later in the month. I haven't found anything yet that pertains specifically to lipedema, but we do know Omega 6 fats are inflammatory, and I'll be sharing what I discover regarding a balance of these fats.

My first Whole 30 - Week 1

By Christina Routon

For the January Lifestyle Challenge I chose to start a paleo diet. I went all in by following a program called Whole 30. You can find out more about this plan at Whole9Life and check out the following websites for recipes:

The Clothes Make the Girl (I'm also using her cookbook, Well Fed)
Nom Nom Paleo

Whole 30 is an elimination plan (no grains, legumes, dairy (except ghee and eggs), sweeteners of any kind) and it also includes other rules such as:

No "paleo" treats
No "paleo-ifying" regular foods - no "paleo bread", etc.

This means my gluten-free pancakes with sugar-free syrup are out, as well as the corn tortillas and grits, peanut butter, and other things I was still eating. Also, all sweeteners, including stevia, Splenda, Truvia, agave - are out. It's been a learning curve, but I'm doing okay. I'm not having the cravings / headaches other people have talked about during the Whole30 timeline as I'd already gone wheat-free / sugar-free.

Here are a few things I've learned this week. The lessons should apply to any type of plan you're doing.

Plan ahead - This is crucial. I can't just run out and grab something to eat for lunch or toss something together for dinner. There has to be a plan in place and food has to be ready ahead of time.

Keep it simple - Don't try to make meals that consume too much time in the kitchen. It's been a week and I already feel as if I'm in kitchen jail. I do try to cook ahead as Melissa recommends in her book, Well Fed, but I end up cooking for about two days ahead instead of the week. One of my rules for recipes - must include items found in my local grocery store. The only item I bought at a health-food store was Coconut Aminos.

Get family participation - My husband is doing this with me as a show of support. It's always nice to have support and participation. Our son still lives with us, but he's been buying his own food.

It doesn't have to be expensive - Yes, I know a lot of paleo and primal sites want you to buy grass-fed beef and free-range chicken and organic vegetables. I can't afford those at this point in time. I buy what I can, even if it's not perfect. I do check the dirty dozen list to see if the vegetables / fruit should be bought organic, though, and if I can I buy them organic or do without. I started buying ingredients and testing recipes during the weeks leading to Christmas, just to test them out. So far, I've only exceeded my weekly grocery budget twice in about three weeks, and then by $20.

I'm not weighing until the end of January, but I do have my weight and measurements from the end of December to compare. However, I'm not doing this for weight loss. As many of you know, with lipedema we're not really trying to "lose weight". We're trying to fight inflammation. Some of what I'm doing may result in weight loss, but I'm not expecting my legs to change overnight. I'm not expecting to drop a significant amount of weight. My reason for following this plan in January and continuing with the paleo / primal diet is to reduce inflammation I already have and prevent any more from occurring.

Starting today, January 7, I'm adding exercise back into my routine as well.

How are you doing on your January challenge?

Acceptance and Freedom

By Christina Routon

Lose Weight Now! Lose Weight Fast! Lose Weight in Minutes a Day!

It's that time of year again, when the infomercials are in full force and most of us are setting resolutions to lose weight and exercise. Before you buy the next gadget you see on TV, look around your house for a second. Look at the Gazelle or the treadmill you bought. Instead of exercise equipment, it's new function is most likely a clothes hanger. I bet you're still paying the monthly fee for the auto-shipment of vitamins that came with whatever doodad you bought last year, aren't you?

We've all bought products that sound so outrageous (Shake Weight? Butt Toning Sneakers?) just hoping they will be our answer, the absolutely last product we'll ever buy ever again, and we'll have the beautiful, firm, shapely legs and body we've always wanted. But mostly the legs. Please, God, let this doodad give me great legs!

Yes, I've prayed that prayer too, and I've bought several products, diet plans, cookbooks. I've lost weight, but as those of us with lipedema know, we end up with the same legs with little to no changes. It's upsetting, aggravating, frustrating. It make me angry. This leads to giving up, putting the weight back on, then in  January we start all over again. This product will work! I know it will! And we're going around in circles once again.

When I learned I had lipedema this past summer, it was hard. It crushed me. It crushed my hope. Before, I had hope. I hoped in the doodads, in the cookbooks, in the gurus. I was trusting in the things of earth and had been shot down. But now, six months down the road, I have something better than hope for beautiful legs and hot body.

I have freedom.

I know the doodad, gizmo, gadget, whatever won't help my legs. I won't end up with shapely dancer's legs in 8 weeks or 12 weeks just by using whatever. I know this because if two years of going to the gym, taking Zumba classes, squats with the Oly bar, leg presses and walking lunges didn't do it, along with clean* eating and calorie tracking (1500 calories, 100 grams protein, low carb) didn't do it, how on earth is this new doodad going to do it?

Back then, when I was doing all of the above, I didn't know I had lipedema. Now I do. Now I know, and I've accepted that no amount of diet / weight loss / exercise / gizmo is going to affect the lipedema fat.

Again, no amount of diet / weight loss / exercise / new gizmo is going to affect the lipedema fat.

I have railed against that statement. I argued, I denied, I refused to believe it. It had to be wrong. I fought against it because it went against everything I thought I knew and everything I'd come to believe. If I was "good enough", if I didn't cheat on the diet, if I followed that exercise plan or this exercise plan, if I drank that shake or took that shot or bought the latest gizmo THEN I would be okay.

I had to accept it. I had data for two years - weight charts, lifting stats, diet record - and at that moment I knew I HAD done everything "right" according to conventional weight loss guidelines. I had done my best, and if my best hadn't helped me lose more than 30 pounds in 2 years, nothing would.

Because I am not a conventional person who can follow conventional weight loss guidelines.

I have lipedema, and conventional weight loss guidelines don't apply to me.

Accepting this reality has led me to greater freedom than I could ever have imagined. I now train to build strength and endurance. I train to keep my joints lubricated, my lymph flowing, my muscles strong. I eat food to fuel my daily life. My goals aren't tied to a scale and I don't care what anyone thinks about my legs, because my legs aren't me.

And I laugh at the infomercials.

*Clean as I knew it then. Now I eat wheat-free / sugar-free to help reduce inflammation.