Wednesday, August 19, 2015

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

Saturday, July 25, 2015

The thing with lipedema diets

By Tatjana van der Krabben
Recently I read a blog by The Well-Rounded Mama with a very accessible overview of lipedema symptoms. Something in her introduction resounded with me:
"However, when I have tried to research the condition, I've been turned off by many lipedema websites. Some pay lip service to being size-friendly but when you dig deeper, there is a whole lot of food neuroses and weight-loss rhetoric" – The Well-Rounded Mama
She was referring to websites, but truthfully you see this in support groups as well. We say you can’t diet it off and then talk about diet, recommend diet, compare diets. What is that?

We are all size-conscious
Society demands we are size-conscious. We were raised to be. Our doctors insist we are, because supposedly our size defines our health. Selected role models on TV and in films and magazines rub it in. Clothes stores pick sides and stock for either the slim or the plus-size, hardly ever for both. Even when they do, they direct you to separate floors.

You’re in or you’re out. And if you’re out, you can always conform by losing weight: this is popular belief and sadly, it doesn’t apply to reality. Not to lipedema, not to lymphedema, not to slow metabolism and…and…and… Not to mention the fact women are still largely being judged on looks. We evaluate what female role models outside the beauty industry wear or their new haircut – like that really matters or as if we would scrutinize the looks of their male counterparts like that.
Is talk of diet wrong?
Not all diet (talk) is bad, I think. Because although we tend to link the word ‘diet’ to ‘weight loss’, there’s more to it.
This is what the dictionary has to say on the subject (source:

diet   (dī′ĭt)

1.  The usual food and drink of a person or animal.
2.  A regulated selection of foods, as for medical reasons or cosmetic weight loss.

3.  Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.

‘The usual food and drink of a person’. That doesn’t sound so bad. We all got to eat, and drink for that matter.
‘A regulated selection of foods, as for medical reasons’. This could be us. This is how I see ‘diet’. Not some thing you deal with for a couple of weeks or months in attempt to reach some goal and leave it, but rather a lifestyle.
Managing lipedema through diet
‘A regulated selection of foods, as for medical reasons’. I see lipedema diet as something like a diet for diabetes or a slow working thyroid. It’s not like you can cure diabetes by following a diet or fix that thyroid, but it does help you manage the condition.

Manage, how? Through Lipese we get a lot of questions regarding diet and specifically what to eat to lose that dreaded lipedema fat. We always answer the same: change your diet and you won’t lose weight per se. With an underlying medical condition that affects your weight it definitely won’t be easy and perhaps it won’t happen at all. This is a disappointing message and not easy to convey, but this is where we currently are with lipedema treatment.

Is there still a point to it, then? What else would there be to ‘manage’? There’s mobility and strength. You can’t exercise and build muscle without proper nutrition. Trying to stop gaining can be a thing. Also very valid: pain management. By attempting to reduce inflammation, you could be able to reduce pain and become less prone to swelling.

Perhaps, trying, attempting, could: we’re all reaching. Preferably for the stars. But it’s far from easy. It requires getting to know your body and figuring out a diet plan that is right for YOU. For some stupid reason (venting some personal frustration here) we can’t make a list of do’s and don’ts we could ALL benefit from. Sadly, with lipedema it doesn’t work like with diabetes, where you can measure a concrete value and adjust accordingly then and there (that’s a bit simplified, of course). Yes, (contradicting) food lists do exist for lipedema, but it doesn’t work for all. Also, there is no research regarding diet or metabolism in lipedema.

Guess what happens next? We swap…dietary theories and suggestions.
Just as long it comes from a good heart and a healthy curiosity, I personally don’t see the harm. Have you found something that works for you? Congratulations! But be aware that the key to your success is yours and doesn’t necessarily work for others. Share & care. We are all in this lipedema boat together.

Friday, June 19, 2015

Highlights from Dutch Lipedema Day Conference – Part 2

By Tatjana van der Krabben

On May 30, 2015 I attended the 5th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog - part 2 - I will point out some interesting facts and figures I picked up that day.
We had a little bad luck: dr. Rapprich had had to cancel. Although famous for his liposuction treatments, he would have covered something entirely different: AquaCycling. He would have presented the first results of a study to include AquaCycling as part of the therapeutic concept for lipedema. I don’t know whether or not certain modifications were made to accommodate lipedema patients during the study, but this is aqua cycling. To be continued, then?
Ms. Smeets-Taubitz, a homeopath and health therapist (for lack of a better translation for ‘Heilpraktikerin’) delivered a very interesting lecture about infrared therapy. In this concept not to be mistaken for infrared sauna. Using specifically the infrared cabins of Physiotherm, lipedema patients were only exposed to temperatures between 27-37˚C (80.6-98.6˚F), therefore no higher than body temperature.

The warmth was directed at the back, to be absorbed by the bloodstream and to affect the lymph. The bloodstream is to spread the warmth over the entire body. It is to effect improved circulation, have a favorable effect on the organs, muscles, connective tissue and skin, potentially reduce pain, improve metabolism and have a favorable effect on the immune system. Afterwards either increased sweating or more frequent urination is reported, as well as weight loss by some over the course of 5 weeks.
Interesting detail was that Ms. Smeets-Taubitz referred to women sweating who were ‘normally practically unable to work up a sweat’. She had observed this more often in lipedema patients and this is something many of us have mentioned on forum, too.

Ms. Smeets-Taubitz may have only worked with a small group, but this has been applied as a therapy for lipedema patients in two German clinics already for some time.

Drs. Schift, cosmetic surgeon, went over the history of liposuction.
In 1974 Georgio Fischer started with fat removal in Italy.
In 1980 Yves Gerard Illouz and Pierre Fournier continued with fat removal in France, which drs. Schift described as still a bloody affair.

In 1987 dr. Jeffrey Klein, a dermatologist from the USA invented tumescent local anesthesia. This was a genuine breakthrough, reducing risks greatly. Dr. Klein’s Tumescent technique is still perceived as a handbook on the subject. Today’s irony being that American doctors now travel to Germany to learn the ropes.
In 1990 dr. Gerhard Sattler introduced tumescent liposuction in Germany. He perfected the technique and worked towards the extraction of larger amounts of fat. Along the way the cannulas have gotten significantly smaller as well.

With tumescent liposuction a fluid is being injected first. Tumescent fluid contains physiologic saline, lidocaine, adrenalin and bicarbonate.
The adrenalin helps the blood vessels contract to avoid a lot of blood loss. The bicarbonate reduces the acidity, making the infusing procedure less painful/stingy. The fat holds the lidocaine, releasing is slowly, which allows for the application of high doses.
However, the body being able to break it down is also very important. This can be hindered by medication like anti-depressants and certain pain killers.
Infusing of this tumescent fluid is not unlimited, but related to body weight: 35-50 mg per kilogram of body weight – if I noted correctly.

Upon infiltration the skin swells and becomes pale, from the contracted blood vessels. Then you need to wait for the anesthetic to take full effect. Drs. Schift described the infiltrated and therefore tense and swollen tissue as more easy to work with, providing clear definition.  
He also tackled the debate among patients on how much was extracted and how come it varies, when they compare their cases. Well, it depends on the person and how much tumescent solution can be used safely for that person. So you honestly can’t compare notes with other patients.

Tumescent liposuction comes in many variations. Initially it was done entirely manually, but this is tiring. Then came: UAL (ultrasound-assisted liposuction), PAL (power-assisted liposuction), WAL (water-assisted liposuction) and LAL (laser-assisted liposuction), not necessarily in that order.
All methods were designed to make the procedure easier, for both the surgeon and the patients and to improve results.
They all have their own quirks. Drs. Schift mentioned the risk of burns with UAL, although it helps loosen the fat, and the difficulty with anesthesia in WAL, the fluid being infused not prior but during the procedure and therefore not being able to put the anesthetic properties to full use and requiring additional anesthesia. Drs. Schift himself favors LAL, which he says is primarily used to burns through the connective tissue and helps the skin contract to avoid pleas and folds in the skin after liposuction.

Drs. Schift also stated that despite large volumes are being extracted, this is, due to the subcutaneous friction, an active procedure for skin, stimulating the skin to retract. Whereas natural weight loss is more passive for the skin and will show sagging skin more readily.

And then…bring on the fireworks! Dr. Cornely, dermatologist and phlebologist, but more so known for his liposuction treatments, covered lipedema in the arms and ‘treated’ us to some graphic, but informational footage.
On forum most object to the claim that lipedema only sometimes occurs in the arms. Dr. Cornely argued 80-90% of the patients he saw have it in the arms as well. Other doctors have come up with percentages of around 30% of the patients, but he disagrees. He said the lower arms are often skipped with liposuction because of the concentration of lymph vessels in the lower arms. He, however, didn’t perceive this as a reason to not treat the lower arms and showed us footage of him doing so.

He also proposes to change the name of liposuction in lipedema to lymphologic liposculpture to take some distance from esthetic surgery, since liposuction for lipedema is not (necessarily) about esthetics.
Then there was an interesting debate on the long term effects of liposuction. Drs. Schift presented 2 cases with very good long term results, but said it was difficult to follow patients (time, cost, developing an objective standard to compare data), but that it would be useful in order to determine the long term effect. Dr. Cornely, however, spoke of ‘curing’ lipedema through liposuction, which statement was also welcomed by another liposuction doctor present.

Weeeeell, that sparked a lot debate and triggered many critical questions. Mind you – the physiotherapists present were for the better part trained in conservative treatment options. So watching liposuction of arms and fingers (!) in action was way out of the box for many, that, and the cure claim. As for the patients: we all fear false hope, don’t we?
I wouldn’t know about treating the lower arms myself. If that is possible, safely, it would be of use for many, since many do have lipedema in the arms. As for a cure? In case you’re not a regular reader of this blog: we’re open to liposuction as a treatment option (been there, done that, no regrets), but we don’t refer to it as a cure. Sadly, there is no known cure for lipedema at this point.
Those who attended the conference may miss 2 lectures in this overview, or three actually. Busted. One was on food/diet, by someone who admitted she had little or no specific knowledge of lipedema. Although touching upon relevant issues such as the quality of food and looking more so at nutrition and its effect on the body than calories, it was not lipedema-specific. Being flooded with (contradicting) information on this subject as it is, I thought it better to skip coverage on this one.
The other being about skin therapy and Ayurveda, more specifically a combination of endermology, Ayurvedic supplements, breathing techniques and exercise. I’m not saying it does nothing, but it described only one case of a lady who (also) had venous insufficiency and therefore had a strong edema component. The before and after pictures were great – she lost inches - but edema is easier to reduce than pure lipedema. At this point the person presenting the findings could not confirm whether or not it was (mostly) edema management and what did what in the treatment program. So, I’m giving it a mention, but am not getting into the details.

A third lecture not covered here did not address lipedema, but body language and therefore doesn’t fit the scope of this blog. Plus, I played hooky with that one – yes, bad me.

Monday, June 15, 2015

Highlights from Dutch Lipedema Day Conference – Part 1

By Tatjana van der Krabben

On May 30, 2015 I attended the 5th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog I will point out some interesting facts and figures I picked up that day.
The first lecture was by dr. Veraart, dermatologist at the Academic Hospital of Maastricht, the Netherlands. At lightning speed he covered some interesting facts and figures:

·         Lipedema is very uncommon in South East Asia. At the same time most cases are reported in the western world.
This I’ve heard before. Estimates about the percentage or number of women affected worldwide vary and they vary for a reason. 11% of all women across the globe most likely is NOT accurate. Careful what you quote out there.

·         There is no hard classification to describe lipedema.
75 years of lipedema as a known condition and we don’t even have that! Dr. Veraart called the number of parameters ‘limited’. In plain English that would be something like: there are only so many (known) symptoms linked to lipedema.

·         Lipedema often coincides with: venous insufficiency, flat feet, obesity and lymphatic insufficiency.

·         Other types of fat depositions do exist. Abnormal fat deposits on the legs is not necessarily lipedema.
Dr. Veraart mentioned in this context Madelung, lipodystrophy and lipoatrophica semicularis. Here’s the catch: he said sometimes abnormal fat deposits on the legs are actually from a different disorder.

·         The cause of lipedema is unknown.
This is where it got really interesting, because he did mention the latest theories. Dr. Mortimer is looking into the genetic aspects and studies families. A genetic mutation (Pit 1) has been found in a family, but in men. For this reason dr. Veraart didn’t think this was the genetic insight that would explain lipedema.

What is known is that our fat cells look irregular, all inflamed and ‘drenched with unrest’. Present theories evolve around an interaction between capillaries, fat and muscles. There’s also a theory where the endothelial cells play a central part; where they (want to) look into the growth factor of these cells and the effect of hormones.
He also speculated about a possible neurogenic effect - you’ll have to excuse me for my superficial account, but he went at lightning speed with medical terms and all. Suffice it to say that there are more in-depth theories available. Stuff that doesn’t involve nagging about calories and the effect of lymphedema protocols on lipedema patients, to name but a thing.

So, there are theories. Now for the hard part. Dr. Veraart was asked what was keeping ‘them’ from actually researching these theories. Money. That’s what keeping them. Most funds go to oncology and cardio-vascular research. He implied patient initiative would be required to get things moving.
The second lecture was by Ms. Dudek, psychologist, psychotherapist and dietician at the university of Warsaw. You may remember her questionnaire being shared on the forums? It evolved around the quality of life in women with lipedema.

For us it doesn’t serve much purpose to rehash that it’s hardly uplifting to deal with an unrecognized and painful condition, rarely diagnosed and mostly fairly late in life and difficult to control, too. However, she did have a few useful insights and points, from the patient’s perspective.
·         Lipedema affects all aspects of functioning, including avoiding treatment, thinking nothing would help anyway. Many of us pick up unhealthy eating habits in the broadest sense: overeating, or eating too little, not eating in company, eating disorders.

·         Dieting can lead to overeating.
She mentioned in this context the Minnesota experiment, an (old) semi-starvation experiment.

·         Social isolation she considers to be more harmful than poor diet and lack of exercise.

·         Which does help in coping with lipedema is psychological flexibility, which – and this interesting – can be learned to an extent.
As for coping with a new diagnosis she gave these pointers:

·         Give yourself time, time to experience that mixture of relief and grief.

·         Be curious and active.

·         Accept what you cannot change, but focus on what you can control.

·         Love yourself – behave towards yourself as if you love yourself.

·         Build a support network.

·         Ask for help.  
As for diet: work on long-term dietary changes, consider mindful eating and use a 80:20 ratio in the healthy food choices you make. Paraphrased I would say the idea behind it is to not go overboard, pick something you can stick with and work with realistic goals.

This is part 1 – more to follow!

Monday, June 1, 2015

Lipedema film fun

By Tatjana van der Krabben

First there was a little and then there was a lot: filmed material about lipedema. The most treasured ones are those made by women with lipedema. They made it visible to the world what it is like to have lipedema. They gave lipedema awareness wings on social media. This blog features some of these initiatives.

In 2013 far, far away from the safety of a (makeshift) studio, British ladies boldy crossed London, England in a bus, holding banners, making stops along the way to tell about lipedema. Their endeavors caught on camera:

A grand operation; a multitude of activists and (liposuction) specialists were interviewed to get a very simple yet important message across: those with lipedema didn't bring this on themselves. You can't rid yourself of it with a bit of dieting and exercise. And any lack thereof didn't bring it on. Below is not the final cut. This month you can register for a free online streaming of the film.

Last year the Dutch also felt they really needed something more visual, in their own language, to share on social media and use with presentations. Although there was an obvious language barrier, the music and the images managed to convey part of the message to viewers abroad and requests came in to do an English version. This is it, freshly released:

Short, sweet and jam-packed with information: the Australian ladies did a fabulous job with an animation:

The next video was pointed out to me recently. Some have made the effort to do a (small) film all by themselves. Sometimes to illustrate why they need funds for treatment, some to raise awareness. This video is raw, personal, but also strong and professional looking.

One more from Germany. Excuse the language issue, but it's a good vlog (video blog) about lipedema and treatment options. She explains what lipedema is, conservative treatment, the point of liposuction and argues liposuction should be covered.

The message is getting out there and is getting shared. Happy June Awareness Month!

Thursday, May 28, 2015

75 years of lipedema: treatment depends on your funds

By Tatjana van der Krabben

Lipedema was discovered 75 years ago. I would like to say we’ve come a long way, but that wouldn’t be entirely true. Still few doctors doctors are informed, few doctors are informed about treatment options, few clinical trials have been conducted and the causes are unknown. Even the acknowledged conservative treatment options, like compression, manual lymphatic drainage, connective tissue massage and liposuction are not necessarily covered.
I can’t complain myself: in the Netherlands I at least get my compression and manual lymphatic drainage covered. But the liposuction came out of pocket. The gym at the local physical therapist’s practice, where I prefer to train because they at least know a little bit about lipedema and plenty about adjusted, safe workout programs is also not covered. Lipedema is ‘not on the list’. Now if I got bigger I could get it through health insurance on grounds of obesity. Wouldn’t we want to prevent that?

Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.

Thankfully I was able to come up with the money to exercise at the preferred place, can get a lot of organic produce, in part because of my in-laws’ vegetable patch where they never ever spray. I also got liposuction when I felt I needed it. My nest egg was gone, but at least I got to have the treatment. I benefitted. I need less of the covered care. Some sweet deal for my health insurance. I can work more and disability is not an issue for years to come - you’re welcome, government.
But what if you don’t have the sort of income to make that happen or a nest egg? What if you have been muddling through life with this unrecognized ‘thing’ that got your clothes size to go up and your energy levels to go down? You cut back on your work hours or changed jobs to match your energy levels. Your income decreased along the way.

So what did 75 years of ‘knowledge’ about lipedema get us? If you can pay for it, you can advance your health. Of course there are some low budget things you can do and once you figure out a safe workout routine you could do it from home, at the park or at a more affordable gym. Maybe you could grow some veg yourself? Let’s face it: liposuction doesn’t cure lipedema, but it sure is the fastest way to get a lot of improvement. But there’s no clever DIY alternative to liposuction. Saving up for liposuction sadly is an illusion for many. So now we see more and more attempts at crowdfunding to make liposuction possible.
Our valued fellow blogger Christina Routon is facing the same challenge. She has worked on her diet, her workout regime and works on reducing stress. Her body however, is not playing nice and is telling her she needs to take another step if she wants to see any more improvement. She has also started a crowdfunding page to work towards liposuction, but it’s hard. I see many similar requests on social media, which also implies a weird type of ‘competition’. The fact it has come to this saddens me. We need medical coverage and affordable care for lipedema. And we need it bad.

Christina is a hard worker with a creative soul and a big heart. I hope she makes it.
More information about Christina’s crowdfunding efforts:

Saturday, May 23, 2015

The Point of June Awareness is Awareness

By Maggie McCarey

Lipedema June Awareness month is  tantamount to Octobers Breast Cancer Awareness 5-mile run to raise money for research.  We and our families unite under one banner against a common enemy to raise awareness and funds for lipedema, an epidemic that affects millions of people worldwide. We spend endless hours together in committee, organizing and planning for the entire year. We network throughout the year and maintain a base of outside support: benefactors. We allocate the proceeds of our hard work to agencies that apply for grants made available from the monies we have collected. We have oversight over them. Our decisions each year evolve from  the successes and failures of past years.  Or, that is what it was meant to be: NOT the free-gifts-and-raffles after party of a game never played that it has become.  

   As a retired pastor, I have learned by trial and error that there are things that work and things that dont work in the life of a volunteer organization.  Things that work have the wind behind them.  They grow, like a persons lifetime of experience, into something that defines itself by the good work it accomplishes. For example, I had a shelter in Alaska for villagers who were stranded or whose family member was in the local hospital. There were many poignant moments. One snapshot: the lingering death of a young native woman on a mattress in a corner above the sanctuary while her children played amid donated clothing and her mother sewed eskimo dolls in half-light. When I left, the shelter closed because it was my idea, my implementation, my back-breaking work, and my success or failure.  
     On the other hand, I have been involved in things that took hold and still evolve year after year, though I and others came and left.  These good ideas became good programs with my support and continued to grow without my support.  One example, is a seven-year-old family-style dinner for an entire community that now serves upwards to 300 people every week.  It started with a few dozen poor and needy people at the table. After 6 months it still had the same couple of dozen poor and needy people.  I wanted to give the dinner up because I received a lot of backlash from the elect, and therefore, diminishing faith that the rich and middle-class would cross lines to share meals with the towns poor, but a committed volunteer said, Give it one more week.  Her faith breathed life into a beautiful idea that became flesh. She is still there, and all the people who would not cross social lines, including the poor, now cook,  serve, eat and clean up together after the community meal. 

   Activism also bears fruit. A young peace corps worker from that same community dinner town went to Koka Toga, Africa. She pledged to her village that she would build a much needed hospital for the region. She ran out of money before the hospital was finished, but she didnt run out of love. She refused to leave Koka Toga until the hospital was built. Inspired by her, my youth group sponsored a drum circle workshop followed by a lasagne dinner and free concert for their town. The huge church was filled with townspeople, all of whom were given drum sticks that they played on the backs of pews while the people of Koga Toga Africa played with them on the other side of the world.  The money to finish the hospital was raised in two hours that night. The hospital was built. Lives are now saved there every day. Thirty-fold. One lost, shy teen in my group found his voice in drumming and  became a percussionist, and  the other teens grew up seeing the power of community in action, sixty-fold. The backs of the pews are softly dented from the pounding they took; evidence of their story of sacrifice and commitment to a cause greater than their everyday purpose. One-hundred-fold. 

      Working for a cause is life-changing and life-sustaining.  It is synergistic, meaning that the whole is more than the sum of its parts, and it lives as long as it is tended to and cared for.  It produces fruit. Otherwise, it becomes a part of the tradition of people who hold onto it because they dont like change. The Christmas advent ring is one of those nostalgic traditions of the church. It is not a sacrament, though people have destroyed each other over it, many times over.  No one knows and no one cares that the advent ring began in Germany when a pastor in charge of an orphanage got tired of the children asking how many days were left before Christmas so he put candles on a wagon wheel and lit one every day. It was magical for the original orphaned children. Now rigid interpretation, number, order, and proper color  have been added to the ring. This is the absolute definition of institutionalizing irrelevance, but it holds no magic for children eagerly awaiting Christmas.  

This is sadly what  June Awareness Month is in danger of becoming. Its history and reason for being are already lost, and it is becoming a commemorative little feel-good substitute for true life-sustaining change. We have not achieved our purpose. We have not worked hard enough to unify once a year for a cause greater than out own take on lipedema. We need an ice bucket year. 

     My favorite story about June Awareness month is one I dont want to be forgotten. One year, the Lipedema Ladies in Britain rented an open air sightseeing bus. They bravely went around London with a megaphone, calling attention to lipedema. There were fewer in number than hoped for (There always is at first), but, in my mind, this memory of a handful of determined women expresses the true meaning of June Awareness. They stood publicly, a handful of committed sisters,  and identified themselves for the world to see because they wanted to make a difference in the lives of women who had not yet hears of lipedema. How much internal change had to occur within those women for them to make their bodies public object lessons, I can only imagine. These Brits are your bar, ladies.  I say: June Awareness has run its course. Let it go.But, I also ask the question: Are there women who will step forward and commit to the challenge of the following statement, Give it one more good year.