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.

Flip the switch & go with the flow

By Tatjana van der Krabben

For June Awareness we initially set up a suggestion box. Of course we were free to throw in suggestions of our own and Maggie came up with promoting self-love. That one matters big time, so we stepped on it. Tirelessly Maggie came up with a new quote, picture or clip every day with a little exercise attached to it.

My wake-up call telling me I still have a long way to go with respect to self-acceptance came with the exercise to write down what we stopped doing because of lipedema. I wrote down 'dancing in public'. I immediately felt like an idiot. Why would you stop doing something you love to do, while physically still able to do it? Why? Because of people staring? What they might think? Because you don't like the attention. Oh, come on! Time to flip the switch.

With my summer vacation booked I got ready or some serious R&R on the beach. So no drama about mentally getting ready. No: what does a woman need to make herself comfortable?

First a little something to read: Inferno by Dan Brown. But I also intend to bring my nerdilicious book on fossils. It's been collecting dust, but not by choice!



Next I figured I needed a new mask and fins for some serious snorkling. My old mask was leaky and my old fins looked like I wrestled with sharks. Comes from using them to cross pebble beaches and get passed rocks, so nothing dramatic. Although I did swim around sharks a few times! I went for fabulous pink ones. I'll be very, very sorry to use them on pebble beaches!




I wanted a free flowing summer dress. One of those cute maxi dresses that are now out there. I love those and they have their obvious benefits. I had some trouble finding a nice one in my size. While roaming the largest department store in my town for THE dress, I stopped in my tracks. I spotted a lovely pink dress. Pink. In-your-face-kind-of-pink. As I zoomed in on the dress I spotted a 'safe' blue version as well. Not free flowing, not exactly wallflower-proof decor. What to do? I decided to try it on. I loved it! I admit, I also tried the 'safe' blue one. And decided against it. Same dress, same print, but just lost its appeal in navy blue. That's how I ended up with a more figure hugging dress.

Please excuse the wheat belly in this picture. Lately I've made one exception after another due to stress and a busy schedule. I'm paying the price. Nothing a good vacation can't fix: a good swim every day and all the time in the world to pick my food. If you look at this picture you probably wouldn't have guessed I have lipedema. However, I originally come from an early stage 2.

The universe apparently intended to have a firm chat with me. The very week I decided I would dance the first opportunity that came along, I had a party. I had forgotten about that. Still, a promise is a promise. If you won't even keep a promise to yourself, what is left?

As it turns out they made it real easy. Totally my kind of dance music. Me and dance music go back a long way and it was pleasant to be reacquainted. If someone stared: I didn't notice. And I don't care!

All these events took place in little over a week. I was beginning to feel more daring. On Lipese Challenge* I made another promise: for this vacation I would not dig up an outdated bathingsuit, nor doubt myself in front of a mirror whether I could 'pull it off'. No, I intended to get myself a nice new tankini.

I tried a few different ones and ended up with a model in a rather tight fit. Realistically I had to focus on keeping the girls secure and decent. I'm not exactly flat chested. That's how I ended up with this model. The legs...stick out, regardless of the fit on your body. For a split second I was in doubt about the bikini bottom. But when considering going one size up, they told me I would lose it swimming. The shop assistants were brutally honest (about the girls' tendency to escape, the fit really, not my legs or size) when trying on different models, so I took their word for it. Bright blue: can't miss me.

All it took was someone stirring things up and a few positive experiences. Just like that. I had a chance to sleep on it and I'm not the least bit sorry I got a dress and tankini that follow my contours. I know I picked the right items. My final challenge for self-acceptance was having my picture taken for this blog. That's still a sore point. See the criticism I put in on my waiste? Well, I saw it through and posted that picture. Also, I see what I'm doing here. I'm leaving the fussing in this blog. It's a nice marker of my progress and what the next step should be.

I hope June Awareness month 2013 will be a lesson to myself on a bad day or during a bad week. There will be moments like that again, too. When a shop assistant is less professional and kind enough to point out exactly those things you don't feel comfortable about. Or someone will stare and you notice. Or something else. I hope I will realize again it's them, not me. Like they are all perfect...

*Facebook group by Lipese

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.

You Are Okay, I Am Fat

By Maggie McCarey

YOU ARE OKAY.  I AM FAT

One of these things is not like the others,
One of these things just doesn't belong,
Can you tell which thing is not like the others
 By the time I finish my song?

     Healthy families raise children who love themselves and others as they are loved. Period. Healthy families raise children who believe in their intrinsic and unique importance at home and in society. Always.  Healthy families raise children to believe that they are not divine mistakes. Ever. On the other hand, dysfunctional families produce children who doubt their self-worth, generation after generation.  A dysfunctional family has favorites among its children and roles: martyrs, scapegoats, heroes, and clowns.  A dysfunctional family orbits around a broken and narcissistic individual who disables rational thinking and loving behavior among and between its members.  Dysfunctional families learn destructive coping mechanisms that they bring to the classroom, church, and workplace. 

BELIEVE ME WHEN I SAY:  if you have been born into a dysfunctional family, and you were tortured for your weight, you were not really rejected because you were fat.  You were rejected because your family had to assign you a dysfunction role to preserve itself.  If you weren't rejected because you were fat, you would have been rejected for having ears like Uncle Egor or being too smart, or the youngest, or the oldest, or, or, or....  Being fat just made it easier for them to assign you a role.  Hey, appearances are "everything."  How can you belong to the "perfect" family if your body is  a sign board advertising  cultural imperfection?  The only way to deal with a fat child in a family denying its humanity is to tell him/er and yourself: your fat is your own fault; you are not like us; you are different; you don't belong.

I worked several years on a psychiatric unit where a sick family  was often evident in our patients.  In fact, in family therapy. we call the patient, our IP: (identified patient) because we know s/he simply sounds the alarm for a family that is about to implode.  Seldom is the real patient hospitalized.  For example, I was responsible for taking family history with each new patient.  I remember one teenager; promiscuous, drug and alcohol addicted; belligerent at school and violent at home.  I asked her perfectly groomed and sweetly smiling mother when she first began to see behavioral changes in her daughter.  The mother replied: "when she was 9 months old."  I looked up from my notes.  The mother clinched her jaw and said: I walked into her room after her nap.  She had poop on her fingers from her diaper and I knew right then and there, that this girl was trouble!"  Her rage was so kindled, the event could have occurred the day before.  And, fifteen years later, acting upon that truth, her daughter was on a psychiatric unit, the IP of a very disturbed family.  The girl's role had been assigned at nine months old.  Your Name Shall Be Called Trouble.  I probably don't need to add that while the girl was on our unit, she was fun, intelligent, wise beyond her years, starving for love, and broken beyond our meds and psychological support to fix.

As we prepared for our January Challenge, we did our usual thing. We did a searching moral inventory of our bad eating habits. We planned deprivation or elimination.  We picked a diet of the decade or the month.   I hope that we also  planned for a different reason than we have in the past. And a different path.  No calorie counting.  No being hungry.  No weighing every day.  I hope we planned to lose weight or maintain our weight because lipedema demands that of us, and not with the idea, that we will lose enough weight to "belong."  We did everything except, perhaps, the one thing we needed to do in order to succeed: bind our wounds with the balm of truth.

One of the greatest selp-help book ever conceived was I'm Okay, You're Okay.  I haven't thought of it for years but someone mentioned it a few weeks ago and at my age I finally got it.  Brilliant! Still being sold.  Keep It Simple Silly, author Dr. Thomas A. Harris suggests that three-quarters of adults live with the belief: "You're Okay.  I am Not." That's a lot of poopy! A lot of family dysfunction. A lot of cultural erosion. Its hard to argue against Harris' number with almost every aspect of just society unraveling in every corner of the world. 

The point? I think many of us who have spent all or most of our lives as fat people in a thin world are acutely aware that we are not okay.  In fact, we could add one more distinction to Harris' book which pretty much sums us up:  You are okay. I am fat.  Until we get to the place where we are okay with ourselves... Okay... Loved...  Cherished...  Able to love ourselves when others cannot because they need our imperfect bodies to hide their imperfections, we will not be okay. It won't matter how many times we lose weight or how much we lose because fat is really not our issue.  BELONGING is our issue and I bet most of you have found a way to belong; you just haven't found away to accept  belonging to people who think you are more than okay!   We have to begin the real lipedema healing process with the aha that we are okay and we are fat. That is our challenge for the rest of our lives.  And it has become a lot easier for us since we have discovered so many others who are okay and just like us.

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.