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

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: thefreedictionary.com):

diet   (dī′ĭt)

n.

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.

Just Be My Friend

By Christina Routon

Hi, friend! Yes, it's good to see you too. How are you? It's been awhile, hasn't it.

Let me order my chicken salad - no croutons, please - and my unsweetened tea and we'll visit for a while. I want to hear all about your job, your friends, all the exciting things in your life. And I'm sure you want to hear about mine.

How are my legs? They're fine, thanks. Yes, I still have lipedema. Yes, I'm still wearing compression hose. Nope, no cure, but research is beginning, awareness is growing.

Am I eating organic?
Do I know what the dirty dozen list is?
Have I given up dairy?
Have I given up sugar?
Have I given up all grains, not just wheat?
Have I tried Paleo / Weight Watchers / Jenny Craig / HCG / Medifast / and so on?
Have I given up soy?
Have I given up nightshades?

Because if I do what you tell me to do (even though you're not a doctor / nutritionist / or even remotely qualified on the subject of diet, exercise and health) I can beat this thing?

Whoa, there, friend. Stop and take a breath. Yes, please stop.

I've lived with this diagnosis since 2012. I've had this disorder since I was in my early teens. Let me assure you, since you're so concerned for my health, that I've tried every diet known to man - and some I made up - over most of my adult years. The two years before my diagnosis I lived on chicken and broccoli and was at the gym six days a week. It took me two years to lose 60 pounds. That's when I knew something was wrong, and that's when I started looking for answers.

Now, friend, I'm not saying this to justify anything about my diagnosis or my life. I'm just telling you, right now, please don't go there with me again. Because what I also carried with me for most of my life is guilt. And shame. And blame. From family, doctors, strangers around me and even well-meaning friends like you.

I have lipedema, and it's a real condition and it's not going away by giving up dairy and grains and nightshades. If it were that simple I'd be cured by now.

So, friend, I appreciate your concern about my health, but what I eat or don't eat isn't up for discussion or debate.

No, I don't want your help. Not if your help is diet advice on a condition you know nothing about.

What do I want from you? I want you to be my friend. I want you to love me. I want you to support me. I want you to listen to my crazy adventures in this life and I want to hear yours. I want you to be understanding if I need to walk a bit slower or rest more often than you. I want to enjoy lunch and ooh and ahh over the baby's pictures on your phone. I want you to cry with me when life sucks and laugh with me when life is wonderful. I want to do the same with you. I want to do life together.

Just be my friend.

Rock your lipedema curves

By Tatjana van der Krabben

Valentine’s Day, the day of love and romance. Before you go over the final arrangements to give your love or loved ones a wonderful Valentine’s Day, I’ve got a big bear hug right here. For you. Yes, you! Of course you!

We’ve all been there: your body goes crazy and you don’t recognize yourself in the mirror anymore. Or worse: people rub it in how much you’ve gained and/or should lose weight. Stuff you can totally do without, to put it mildly. But where does that leave you? Is shopping still fun? Can you still be bothered to dress up? Is black your favorite color these days? Has your pretty smile left the building?

If so, it does not have to be like that. Megan Trainor is singing about junk in all the right places and gets praised for it. Nicki Minaj is flaunting what we are usually trying to hide. And what do you know: the perception of what is true beauty changes every decade or so. That’s right: times they are a changin'. Curves are back! So here’s one for you:

If Kim Kardashian can be revered for her booty, so can you!

Or your other curves, for that matter. She simply markets them as beauty and shows her curves with pride. The way she presents it, it just is not open for discussion. Result: plenty of takers. Got to give her credit for that.

It all starts with a little confidence and self-love and that is what I wish for you all this Valentine’s Day. I seal it with a virtual bear hug, because we all need one sometimes.

That leaves just one more thing:

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

Yvonne van Stigt researches how to defeat lipedema

By Tatjana van der Krabben

October 2012 I attended a conference on lipedema. A very energetic lady delivered a lecture with a fellow researcher. I struggled to follow her on the topic of the leaky gut – then an only vaguely familiar concept to me. She got me when she mentioned low-grade inflammation related to lipedema. Bam! Yes, everyone, less than a year ago that was still news and at Lipese we were searching high and low for more information on the subject. And there was Yvonne van Stigt, not only on board with that, but also touching upon a sore point as how to fight the inflammation: with food - our enemy, our Nemesis. Van Stigt is a Paleo advocate, but a change of diet is only part of what she has to say. I recently had the honor of interviewing her on her views and plans.

Van Stigt has firsthand experience with lipedema
Yvonne van Stigt, specialized in clinical psycho neuro immunology, has an interesting history. She had, as she puts it, lipedema and started to study clinical psycho neuro immunology to help heal herself, as she couldn’t find the help she felt she needed in the traditional medical field. Unfortunately, her claim to have healed from lipedema sometimes yields adverse reactions. It is, however, not as controversial as it seems. She is currently free of symptoms. She described her legs as pain-free, no longer swollen, of a more modest size, but hardly perfect. Being symptom-free does not equal killer legs, unfortunately. I’ve met others coming pretty darn close to being free of symptoms. So her claim doesn’t offend me. More so, I find it inspirational.

Clinical psycho neuro immunology
Clinical psycho neuro immunology is described by Van Stigt as ‘system thinking’. Finding a correlation does not suffice: clinical psycho neuro immunology seeks to understand the underlying processes. When you hear her string her theories it’s like listening to someone describing domino chain reactions, one stone after the other going, coming full circle in the end.

When treating patients she lets them fill out a questionnaire first. During the initial session she observes people and goes over the questionnaire. She provides them with a set of rules regarding diet and exercise. Generally, the younger people change their habits, the faster and the better the result. In case of persisting health issues there may be (some) irreversible damage. She also says 75% can be sufficiently helped with these guidelines only. About 25 percent needs additional tests. A blood test seems like the next step, but Van Stigt isn’t necessarily keen on standard blood tests. “For instance: just because the blood has high levels of a vitamin, doesn’t mean there is no shortage on a cellular level. A blood test doesn’t tell that.” Instead, Van Stigt also uses urine tests or, when testing blood, zooms in on the red blood cell.

Thinking outside the box
Although she continuously speaks of causes for lipedema and doing something about it, she acknowledges it’s genetic. “A good genetic package would have left you with a solid foundation of muscle, naturally capable of burning fat. When you have lipedema, you lack these genetic benefits, making it challenging to burn fat.”

She doesn’t believe it’s hormones only. Like many of us already experienced, the early onset can predate puberty. Van Stigt identifies three triggers: stress, hormones and the immune system. Which one will tip you over the edge and will bring on obvious lipedema signs, is personal. Which triggers will continue to haunt you with symptoms is personal as well. This rules out a standard approach for each and all. “After the balance is gone and your poor genetic package is becoming a factor, your body reacts with a survival strategy,” explains Van Stigt. “This could be, for instance, diabetes, fibromyalgia or lipedema.” Lipedema here qualifies as a survival strategy, because the body is looking for a way to cope with the lack of balance. In case of lipedema, the body has issues disposing of toxicity. The lymph shutting down is a strategy of the body to prevent toxins from reaching vital organs via the lymph circulation, but it shutting down also hinders the disposing of the toxins. This also explains why, when reducing toxicity levels, the lymph start to function better, unlike for those with lymphedema. Technically, the lymph can do the job, provided it hasn’t gotten damaged over time.

As for treatment, Van Stigt works closely with a gynecologist who tests hormone levels. Bio-identical hormones are recommended when deficiencies turn up. To state the obvious: that would not be a deficiency of estrogen. Mostly, in case of lipedema, there’s estrogen dominance. As for the immune system – it’s often under pressure because of a poor diet. “Modern eating habits are poor eating habits by definition”, she says. Van Stigt, being a Paleo advocate, does sympathize with those dreading the transition to a different lifestyle, although she wouldn’t want it any other way for herself, knowing the consequences. “Commonly it takes 7-10 days to adjust to the changes. After that, you already start experiencing the benefits, which usually acts as a great incentive.”

Although not focusing exclusively on lipedema, it’s obvious she’s passionate when it comes to fighting this condition. She now has her heart set on a 10 day therapeutic retreat for lipedema patients coming winter. Van Stigt wants to give people all the tools and help them to learn to eat differently, safely start up with special exercise and stimulate the lymph through osteopathy, among other. She’s eager to prove that’s all it takes to get properly started with the rest of a better, more comfortable life.

I was jumping on my seat when I found out. I can’t make it on this trip, but someone out there wants to do something that could be the closest thing to a clinical trial that we currently have regarding lipedema, exercise and diet. To be continued!

Obviously, I’ve given a very brief and incomplete description of Yvonne van Stigt’s work. Her new book, which will describe her theories and findings regarding lipedema in great detail, is due mid-November in the Netherlands. An English translation will follow. I’ll keep you posted.

 

The Power of Words

by Christina Routon

We know the power of words. They can empower us, they can hurt us. We know this all too well as most of us have been hurt by someone else's careless words. But one issue with words are the words we say to ourselves.

We say things to ourselves we'd never say to anyone else. We put ourselves down in many ways, often several times throughout the day. It's no wonder we have low self-esteem and it's difficult for us to believe anyone likes us, let alone loves us.

Part of loving ourselves is paying attention to the words we speak, especially about our appearance. In Song of Solomon, the Shulamite woman says,

Dark am I, yet lovely,
    daughters of Jerusalem,
dark like the tents of Kedar,
    like the tent curtains of Solomon.^[c]
6 Do not stare at me because I am dark,
    because I am darkened by the sun.
My mother’s sons were angry with me
    and made me take care of the vineyards;
    my own vineyard I had to neglect.

(Song of Solomon 1:5-6)

She explains she's tanned and why, and that she neglected her own body because of the work she had to do. In her culture, dark skin meant you worked for a living, typically outside. She knew others would fault her appearance, but she knew there was reason for it. 

Why don't we say, 

I have lipedema, but I am lovely. 

Don't stare at me because of my large legs. Something happened that no one fully understands at this moment in time. Yet I am more than my body. I am a wife, a mother, a sister, a friend. I laugh, I love, I cry. Know me for who I am, not how my body appears. 

One of the most beautiful verses in Song of Solomon is then said on their wedding night. The woman's husband spends time praising her beauty and says this: 

"You are altogether beautiful, my darling; there is no flaw in you." (Song of Solomon 4:7)

We need to see ourselves this way. Make this an affirmation. Say it to yourself daily, especially when you may be tempted to complain about your legs. Say it as you dry off after your shower, as you get dressed for the day or undressed at night. Care for your body by using sweet smelling lotions and perfumes, styling your hair and using good makeup. These things are important, but we also need to tame our tongue and speak words of life instead of words of death. 

Don't allow words of death from the past to overshadow you any longer. Release them, and know you are altogether beautiful. There is no flaw in you. 

These are declarations spoken over us at a small group and retreat we attended in December. Speak them out loud, over yourself and others, if you want. 

LIFE Declarations (From Living in Freedom Everyday, Church of the Highlands)

I declare that you are blessed with God's supernatural wisdom, and that you have clear direction for your life. 

I declare that you are blessed with creativity, with courage, with ability, and with abundance. 

I declare that you are blessed with strong will, self-control and self-discipline. 

I declare that you are blessed with a great family, with good friends, with good health, and with faith, favor and fulfillment. 

I declare that you are blessed with success, with supernatural strength, with promotion and with divine protection. 

I declare that you are blessed with an obedient heart and with a positive outlook on life. 

I declare that any curse that has ever been spoken over you, any negative evil word that has ever come against you, is broken right now. 

I declare that you are blessed in the city. You are blessed in the country. You are blessed when you go in. You are blessed when you come out. 

I declare that everything you put your hands to do is going to prosper and succeed. 

I declare that you are blessed!

Finding My Identity

by Christina Routon

Two years ago this month, my husband and I divorced.

Yes, you read that right. At the end of February 2011 I sat in a lawyer's office and signed divorce papers. It was one of the hardest and most painful things I'd ever done in my life. It was also a wake up call from God, and through this day He's led me on a journey of discovering my identity.

Ending up at the attorney's office wasn't an overnight decision, of course. And God had been working in me for some time, nudging me, inspiring me, to do certain things, to change certain things. And I ignored the nudges. I turned away, I disobeyed, I flat out said, no, why should I change? HE should change. Other people need to change, not me.

And the result was a broken marriage and a broken woman, crying on the floor of my bedroom, feeling more alone than I'd felt in a long time. And it was there that I submitted to God, that I begged for forgiveness from a God I truly believed was fed up with me and who hated me. And I asked for healing, for myself and my marriage, even though in my heart I felt it was too late.

Instead, I felt a wave of peace wash over me. There was no hate, there was no anger, there was no bitterness. There may have been some frustration, but He never pushed me away. Instead, He said to me, "Finally! Now, we can start over." And little by little, he began to rebuild me.

This started with my self-esteem. As my husband shared in his post, my self-esteem had been shot for a long time, mostly over my appearance. I hated my body. I hated how I looked and how I felt. Now I was in a position where I hated my character. God began telling me and showing me how much I was loved, how nothing I could ever do, say or feel could separate us. He had to start with my character because I felt unwanted and unloved at that moment. I didn't feel worthy of love. He led me to music, He led me to books, He led me to movies, and spoke through them each time.

I began to write affirmations on index cards. I put them on a bulletin board and read them every day.

I am an honored child of God.
I am a beautiful, sexy woman.
I am living a wonderful, beautiful, abundant and creative life.

He sent me the song "Beautiful", by Mercy Me, and I still play that song and listen to it almost daily.

So what does this have to do with lipedema? All of this happened before I discovered lipedema. But I was on a quest for answers. It started with Who am I? God answered this, and continued to tell me and show me how important I was to Him over time. Then it changed to What am I called to do? And he answered that as well, and I finally submitted to the call to be a writer. It's strange when life throws you a curve ball and you end up where you never expected. You no longer have any fear. I stopped being afraid to go after a dream, and I just did it. I was inspired to write a short story, so I did, and sold it within a month. I was inspired to start a website about running a transcription business, so I did, and after a year and a half it's started to gain a following and make money. I finished a book I'd been working on since 2003 and self-published, then I started writing another book.

God began working on my ex-husband as well, and our son, and issues we had as a family. Six months later, in October, 2011, we remarried, and we're more in love now than we were at 18.

Then it was time to get back to work on my health. I'd been working out and dieting already for two years and hadn't seen any real results. My legs were still large and I'd only lost thirty pounds. Since the divorce, I'd been working two jobs - a full-time job during the day and in the evening I'd come home, eat a bowl of cereal, then work transcription jobs until 10:30 or 11:00. I wasn't taking care of myself anymore and after a couple of months it was time to start again. So I made my doctor's appointments and started using my insurance benefits. I continued to ask questions, I continued to search for answers, until last June I got my answer. I had a condition, with a name, but no cure and no treatment. And it broke me.

Once again God had to rebuild me and remind me of my identity. As I left the pharmacy after picking up the medication the endocrinologist had prescribed, I was almost in tears. I clutched my husband's hand as we left the grocery store and the song on the PA system changed - Lionel Richie's "You Are So Beautiful."

I stood in the parking lot of the grocery store with my husband and cried. I cried for the lost hope, the lost dreams, the possibilities of a future filled with pain and loss of mobility. Never wearing dresses or skirts again, never wearing a pair of boots. A lot of that seemed silly, but these were things I really wanted and hoped for. I wanted to be normal. I wanted to be on the outside the person I was on the inside. It's taken some time, but I am finally learning - and believing - the truth, and not the lie.

Our identities are NOT this disorder or any other medical condition we may have in addition to lipedema. Our identities aren't our large legs or arms or butts. Our identities are not our jobs or our families or our social status. Our identity is this, and this alone:

You are an honored child of God.
You are here for a purpose.
You are loved.
You are beautiful.

Love and Relationship with Lipedema

by Scott Routon as told to Christina Routon

I met Christina in third grade. She'd moved to my small town in Georgia after her father separated from the military. I was fascinated first by her hazel eyes and by the fact that she was wearing a skirt when most other girls in school wore jeans every day.

We became best friends, and on Valentine's Day in third grade Christina asked me to marry her, and I said yes.

We had some growing up to do, of course, and as time went by and I switched schools we saw less of each other. Then one day this beautiful young woman stopped her car and asked if I needed a ride. We spent the afternoon together and ended up dating for the next two years before getting married in 1990. I was 19, Christina was 18.

There was a sexy librarian-sharpness about her that intrigued me. She's one of the smartest people I know. There was something I found fascinating about her, I can't put it in words. We did have our differences and our issues, though, and while I was in the military and away from home I sent her a break-up letter. I had second thoughts, though, and called her. I couldn't imagine being without her, and I didn't want her to be with someone else, and this time I asked her to marry me.

When I saw Christina on our wedding day, she took my breath away. She was beautiful. When we did the garter toss, I did notice she'd only put the garter up to just under her knee. I didn't know why. I knew Christina had been complaining about her weight and her legs, but I didn't see anything wrong with her. I love curvy women, and I liked seeing her in dresses, skirts, shiny hose and heels. I didn't see anything wrong with her legs. They were just part of her.

Over time, I did notice Christina was gaining weight and some of the clothes she wore didn't seem to fit as well as they used to. We didn't know anything about lipedema at that time. When Christina gained weight when pregnant with our son, that's when I noticed a change in her legs. I was concerned, and I still thought she was beautiful, but we both figured that after the baby was born she would lose the weight and she'd look the way she did before. She's always had a pear-shaped, hourglass figure that I love, and I did want her to get that back.

When we moved to Alabama and Christina joined the gym, I'd never known anyone to work harder. She was going to the gym almost every day, running on the treadmill, lifting in the weight room. She and those other ladies kicked my butt in the spin class! I couldn't keep up, and that blew my masculinity to pieces. But we were both concerned when she continued working out and cutting out junk food and yet only lost thirty pounds during those two years. That was when we started to suspect something else was going on.

I'll never forget when the jerk online said something about her legs. She'd been posting on a well-known bodybuilding forum and had asked for advice about her program. Christina was discouraged because her legs weren't changing no matter what she was doing. This jerk came on the board and replied to her post, basically calling her a liar about her workout and diet and saying horrible things about a picture she'd posted on her profile page. This was one of those times I wanted to hunt someone down and hurt them they way they'd hurt my wife. She cried for a long time and came very close to giving up everything she'd worked so hard for.

This was also the event that made her want to seek out more information. She'd struggled for so many years with her weight and her legs. The way her legs looked was so tied to her self-image that it did affect our relationship and our intimacy. I've always believed she was beautiful and shapely. It didn't matter that I told her she was beautiful and I loved her shape and yes, even her legs. I hated that she didn't wear skirts or dresses anymore and wanted to hide her body from me. When she talked about seeing an endocrinologist to find out what else may be going on I supported her decision.

When Christina started taking medication and she finally started losing weight, we both had hope. I wanted her to wear dresses again. I wanted to get her a pair of boots to wear with a skirt and tights. But when her legs didn't change that much, the doctor said lymphadema. Christina, ever the researcher, began to search for answers and that led us to lipedema.

Everything she found said no cure, no treatment. I was furious, I was upset. It was unfair. It's hard to explain how crushed I was. I felt I'd never get the Christina I'd known back. I still loved her very much, but it was hard. And she'd been working so hard to lose weight and I wanted her to look the way she felt.

For Christina, it had a name and that was a relief. But I need an enemy I can fight. This was something I couldn't conquer. It was hard to accept, and I needed hope. I needed to hear something, anything, besides to accept it and get through it with God's grace. I needed to hear God can and will heal, that's there's medical treatment, something.

When Christina started the wrapping therapy, it was hard for me to see Christina go through it day in and day out, but it made me feel proactive. I felt like we were doing something and that felt good, it gave me hope, and I could let some of this anger out.

I'm still angry that there's no medical treatment or a lot of research in the United States for this. I also hate that a lot of plastic surgeons don't know about this or if they do, many won't touch it because of possible physical complications. I hate that many doctors don't know about this and continue to hurt and discriminate against women who have this disorder.

I completely support liposuction as a treatment for this, and if Christina and I have to go to Germany to have it done then that's what we'll do. Until then, we'll continue to learn as much as we can, continue to experiment with diet and exercise, and even if I have to have a pair of boots custom made, I will see Christina in a skirt and boots one day.

Living and Dealing with Lipedema

By Christina Routon

Over the years, even before I knew I had lipedema, I've had to make adjustments in how I lived my life. Thinking ahead, the weather, the clothes to wear, would there be a chair I could sit in? Here are a few tips on how I've dealt with my legs.

Tip 1 - Wear knee length or capri length workout shorts / leggings under dresses and skirts to protect skin.

I discovered when I was pregnant that wearing dresses and skirts, even with hose, wasn't going to work with  my legs. The skin on my legs would rub together as I walked and it got so bad, even with hose, I knew I had to find something else to wear. These were the days before Spanx and other types of shapewear, so I found some comfortable workout shorts. I had knee length pair and a capri length that went over my knees, so I could wear them under pretty much anything. Yes, they were hot, especially in the summer and wearing them over hose, but they protected my skin.

Tip 2 - Sideways - sit

I learned this while going to amusement parks and riding the roller coasters. While I technically did fit in the seat, the bar coming down over my legs hurt and pinched, sometimes leaving bruises. What I started doing was getting into the coaster's car, sitting sideways or slinking down just a bit in the seat with my legs straight out in front of me. They would lower the bar and then I would be able to adjust my legs under the bar. It wasn't always comfortable, and I don't know if it compromised safety, but I was able to ride the coaster. Sometimes I still do this at an older movie theater or restaurant booth if the seat is narrow.

Tip 3 - Arrive early to save a seat

No matter where you're going, try to make sure you arrive a few minutes early if possible, especially if you need a seat and don't know what types of seating will be available. If you're going to someone's house, do your best to arrive right on time and scope out a comfortable seat. This could be a large chair, a dining room chair without arms, or a place on the couch. Save the seat with your purse and do whatever you can to keep it as the night goes on. Do your mingling with your friends during the early part of the evening so when you need to rest you'll be able to head right to the seat you've saved.

Tip 4 - Buy the best pair of supportive shoes that you can afford

One of the common physical traits of lipedema are fat pads on the inside portion of our knees. These pads tend to bow our legs in slightly, which affects our gait, and our feet tend to pronate. One way to protect our feet is to buy good, supportive shoes - the best we can afford. By buying good shoes instead of the cheap $10 tennis shoes, we are able to treat our feet better, have less pain and more energy to walk, exercise and go to work. I learned a long time ago the cute shoes would end up doing more harm than good when it comes to my feet. You don't have to buy old-lady shoes or nursing type shoes with a large sole. Just buy the best pair of shoes you possibly can and replace them every six to seven months.

I'm blessed that Lipedema hasn't impacted my mobility to the extent that I need a cane or wheelchair, but these are considerations for other women who deal with this disorder. What are some tips on adjusting your life with lipedema?