The Numbers Game

Women with lipedema come in all shapes and sizes. Although most of us have larger-than-normal legs (and sometimes arms), the rest of our bodies may be thin, slender, average, curvy, thick or plus-sized. In stages one and two, women are more likely to be slender and have normal BMIs.

Beau Dunn, a model with lipedema

At the FDRS, I learned that once we reach stages three and four, BMIs are invariably above 40. This, for those who don't know, is in the morbidly obese category. The speaker who discussed this mentioned that it can make it hard to determine appropriate weights for those with lipedema because much of that weight can be in our legs and not in our torsos. 

As my surgical consult date nears, I've become a woman obsessed as I try to figure out how much weight I need to lose to get down to a "normal" weight. Obviously, BMI is going to be no friend of mine, so I had to find some alternative measurements. As it turned out, there actually are some other ways to determine health with math and measurements. Hence, the numbers game! 

For my fellow lippy ladies, here are three sets of measurements that I took: 

Waist-to-hip ratio

Waist-to-height ratio

Neck circumference

The first measurement determines the size of your waist compared to your hips. Women should have a waist-to-hip ratio below .85. This means that a waist-hip ratio of 0.9 could indicate a higher-than-normal heart disease risk. 

The second measurement determines your waist measurement compared to your height. Now, this one is a little trickier. The ideal waist-to-height ratio can vary a bit based on age. If you are under 50, your waist should be less than half your height in inches. So if you are 5'8", your waist should be fewer than 34". If you are over 50, you get a little more leeway and can have a waist up to 0.6 of your height. Anything over these percentages can increase your risk of cardiovascular disease and t2 diabetes. 

The final measurement is easy -- no tricky calculations needed! Your neck should be smaller than 16" if you want to lower your sleep apnea risk and smaller than 13.5" if you want to lower your heart disease risk. The neck is apparently a sneaky fat storage spot, and so if you have a fat neck, you might also have high blood pressure, high triglycerides and low HDL.

What do these numbers mean for you? Well, if you're a lippy lady, they mean you need to get measuring. They might just give you some great info about your health. While it's true that lippy fat CAN start growing in the abdomen particularly in the later stages, it's less likely that we have lippy fat in our necks, so these measurements can give us more accurate insights about our health. 

How were my numbers? Let's just say that I was pleasantly surprised. My waist-to-hip measurement was 0.69, which is not surprising for a lippy lady (we have curves, to say the least). My waist measurement wasn't great, but it also was the average for an American woman, which WAS surprising given my weight is NOT the average. I have a few inches to lose to get it down to 0.5 of my height, though, so that's definitely a goal. My neck? Perfect.

So it all comes down to my legs. And that both surprised me and didn't surprise me. In a way, I felt defeated because if I can't get surgery, I'm stuck. I've worked so HARD to maintain a healthy weight but have failed miserably -- and it hasn't been my fault! Because the rest of my body is where it should be. The fault is my legs! And arms! It's my disease. And that's pretty frustrating. 

But I also felt hope. Because if I'm able to get insurance to cover this surgery, I'll be able to get out there and be active again. I'll be able to go hike through the Cache River Preserve in early March in the icy cold rain for hours again 

Oh man, coldest hike EVER.

I'll be able to play in the skateless skate park with my kids again,

Go camping at my favorite lake with my favorite men,

Hike through the Garden of the Gods in the Shawnee National Forest,

Or just bike up Art Hill. 

These are the things I used to love doing. They're the things my legs no longer allow me to do. They're the things that I can't wait to do again once I have surgery.

Not if I have surgery.

When I have it.