I have Lipedema…Part 1

Jun 05

I have Lipedema…Part 1

June is Lipedema Awareness Month. I’ll be talking about my journey with this mostly unknown disorder. Follow the links below the post to read more great blogs by some awesome people who are part of the Lipedema Awareness Blog Hop.


 

About five years ago, while still living in Georgia, I’d been working out off and on and started to watch my diet. I joined a popular bodybuilding site for information and support. Through that site, I decided to do a 12 week Body for Life program. Many people on the forum raved about it and had done it several times. I thought lifting may finally be my answer. After years of aerobics and dieting, I didn’t have the body I wanted, especially my legs. I wanted my legs to be slim and strong. But as long as I could remember I’d had thick, fat legs. I was tired of it. I wanted to look like the people in the after photos on their site and in their book.

I did the program with the weights and equipment I had, stuck to the diet plan and twelve weeks later I lost all of five pounds. My measurements barely changed. My legs were still large. Yes, I was stronger. I could lift heavier weights. I felt better, but why hadn’t it worked? Why hadn’t I lost the average amount of weight other people lost on their first Body for Life round? A little voice started to whisper to me, telling me something was going on. I had no idea what it might be and I had no insurance to visit a doctor, but I started researching.

I thought maybe I had a thyroid issue, but I didn’t have all the symptoms. Due to my frequent bruising, I thought I might have Lupus. But again, I didn’t have all the symptoms. I began to pray for answers.

Not long after that I was watching Biggest Loser and saw Brittany, a contestant that also had issues losing weight. She would lose maybe one pound during the weigh in. Jillian Michaels was her trainer and knew something was wrong. She took Brittany to an endocrinologist. I heard later on Jillian’s radio show that Brittany had been diagnosed with PCOS, she was being treated and had started losing weight again. With this information, I called into Jillian’s radio show one afternoon and got to speak with her. I explained my diet and exercise program and she told me that if I was sure that my diet was good and my workout was good that seeing an endocrinologist should be my next step. So that became my next goal. I still didn’t have insurance and I found out a visit would cost over $200.

I did find out I could get some lab work done myself through a website, so I decided to have a thyroid panel done. I drove to a Lab Corps office and they sent my bloodwork off to the website. Everything on my thyroid came back normal.

We moved to Alabama and I joined a gym. For two years I continued to work out, lived on chicken and broccoli and lost forty pounds. I did my first spin class and loved it. I went to Zumba twice a week and lifted weights three times a week. But I still had large legs and no answers.

After my divorce and separation, my full-time job offered medical benefits. I made an appointment with a local endocrinologist and knew I was going to get some answers. I knew this would be the answer! When he saw me, he immediately noticed my legs.

“How long have your legs been swollen?” He asked.
This blew me away. Swollen? I was confused.
“They’ve always been this way,” I said. “I have fat legs.”
“I think you have a condition called Lymphadema,”

He prescribed a diuretic and gave me some other tips for treatment. I went home and started to research this condition I’d never heard of. Again I was blown away.

I didn’t just have lymphadema. I had primary Lipedema (Lipoedema in the UK). This was a disorder that caused bilateral disproportion in the arms and legs due to uneven fat storage. I saw pictures of women who had this disorder and their legs looked just like mine.

It’s been a difficult journey, but so much good has come from the past three years since my diagnosis. I got a name for this issue, and knowing the name is the first part of taking its power away. I was treated for the Lymphadema and got it under control. I’ve been able to work on myself and my self-image. I’ve let go of so much blame I’d placed on myself for something I can’t control. I’ve grieved for beautiful legs. I’ve grieved for the years and experiences I’ve lost – the times I didn’t go to the beach, the photos I’m not in, the trips I didn’t take.

The best part of this entire journey, though, has been finding an awesome community of women who are paving the way for research and treatment of this disorder. An awesome group of Australian women on Facebook first took me in. Since then the Lipedema support groups on Facebook have grown to include women all over the United States and the world. We’re spreading the word with our primary physicians and seeing more physicians learning more about this disorder. We’ve seen more information about Lipedema in the media over the past year. An awesome group of women at Lipese.com are blogging about research in Europe and the United States, diet and exercise and lifestyle. It’s these relationships that I treasure and value the most. God truly is working all things for good.

 

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