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

Lifestyle changes with lipedema – do or don’t?

By Tatjana van der Krabben

Here at Lipese we speak of hope and leaving no stone unturned on the road to recovery. This upbeat message isn’t necessarily welcomed. We come across countless reasons to stay clear of lifestyle changes:

- It’s genetic
- It’s progressive
- It’s incurable
- If lifestyle works, my family will blame me all over again for being overweight
- My doctors says low carb and going wheat-free and sugar-free is not proven
- My doctor says birth control with hormones can’t affect my legs
- Exercise hurts

We get it. Of course we do! We, too, are in this boat. Frustrating isn’t it? Having lipedema, getting mixed signals, being told time and again that there’s no research to support claims. Conservative treatment is compression, manual lymphatic drainage and the piece of advice to ‘watch your weight’. Frankly, that’s not a whole lot to go on, especially combined with the ‘lipedema is progressive and incurable’ message. I got this speech as well from my dermatologist when I got diagnosed.

I always get an itch I can’t scratch when I hear the word ‘incurable’. Don’t you? Lots of conditions were incurable at some point. ‘Incurable’ is so negative. How are you supposed to derive any motivation from that? And how does that mean ‘nothing will help’? Many beg to differ.

Lipedema need not be progressive. You could possibly even reverse some of the symptoms. There. I said it. Do I hold the magic ingredients to a potion or something? No. Still, lifestyle changes have stopped the previously experienced progressive nature of lipedema in its tracks for a growing number of patients. It takes searching and tweaking and trying and effort. Lots of effort. But you DO have options.

With people sharing their experiences online through social media, you get an idea of what is driving people. There is no single diet that will work, unfortunately. Women report different triggers for sudden weight gain and/or sore legs, but also variations in the extend in which they cut out grains and carbs. I was asking around which doctors now recommend going wheat-free and sugar-free; giving up both tends to yield results for all involved. I abandoned that idea and this is why. Truthfully, you could still dismiss me for lack of scientific substantiating, for the absence of any and all medical trials, either pro or con for leaving out certain food items or incorporating certain exercise. You could argue that for the lipedema specialists that recommend leaving out certain foods, there are at least as many doctors, if not more, recommending something along the lines of the food pyramid, calorie counting or gastric surgery. It’s all out there and they are all considered to be lipedema specialists. True. But if you’ll indulge me one minute on the soapbox? Just one minute. I promise.

Sugar

Sugar is not really food. It’s a sweetener. You don’t actually need it. More so, it’s unhealthy. Regardless what a doctor specializes in, he or she will not frown upon you for leaving out sugar. There’s nothing wild and crazy about quitting sugar. It won’t lead to nutritional deficiencies. So, if there is a little fiber of hope left in you, after all the dietary disappointments you probably had, that something could work, think sugar. Here’s the actual challenge: don’t substitute the sugar for artificial sweeteners. Unfortunately more and more evidence suggests that’s at least as bad if not worse than sugar.

My minute is up. I’ll get off the soap box as promised. Should you give it a try for a couple of weeks, will you let us know how it went?