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.

It All Adds Up

I sometimes focus on the emotional toll of this disease, but the financial toll can be just as heavy. I have, so far, been remarkably lucky in that my insurance has covered nearly everything I've needed. But this isn't always the case. I've read story after story of women who have been turned down for even the most basic treatments.

My MLD, or physical therapy, was completely covered, and because it was performed at an in-network provider, I only had to pay a small copayment. The amount billed? $2,968.

The Flexitouch is considered durable medical equipment. It was billed at $12,809.17. My copayment/coinsurance was $3,716.68. The Flexitouch company further reduced that cost to just $2,000.

There are no medications, but many women use supplements to combat the inflammation, venous insufficiency, swelling and other associated symptoms. These include selenium, Butcher's broom, vitamin D, fish oil, probiotics and turmeric, just to name a few. This can also get costly. Insurance does not cover supplements.

Compression can vary wildly in cost and usually isn't covered unless you have lymphedema as well. I use Bioflect, which is definitely a more affordable brand. The Bioflect Pro leggings (which cover from foot to ribcage) cost $105 per pair (and you definitely want more than one pair unless you want to be stinky and gross) and then add in some arm sleeves for about $50 per pair.

For women with no insurance or whose insurance refuse coverage, these costs can be impossible to manage.

There's also a heavy time commitment to treatment. The Flexitouch treatment takes two hours a day, two hours when I have to sit still while the machine does its work. The MLD appointments last about an hour and took place twice a week. There are all the other little time-takers during the day, too, like wrestling myself into and out of compression (this is not an easy job), and I have to do it before and after any treatment, after bathing, whenever I use the bathroom ... it's burdensome.

Dieting and exercise would be a breeze compared to this. This is where I am right now. Denial, desperation, resignation. I'm slowly moving towards acceptance.

And on that note -- I have my surgical consult in about two weeks. Hopefully, I'll find out where I stand when it comes to insurance coverage. I am so afraid my luck is going to run out soon.

Things I have going for me? My surgeon is an assistant professor at a top tier medical university that is associated with the hospital through which my insurance is provided. He is the only lipedema surgeon in the country that actually accepts insurance. He fights tooth and nail to get his patients' surgeries covered because he believes we all have a right to treatment. (This also means he's getting a smaller paycheck since he's getting the negotiated cost from the insurer). As of April, when the FDRS conference took place, he was getting more than half of his patients approved for coverage. Finally, I'm at a late stage, which may help push things forward since the possibility of me needing more serious interventions (like knee replacement surgery or mobility aids) is becoming a very real possibility.

Who could have imagined that being at late stage three lipedema could ever be considered a good thing? Well, in this case, I think it might be! I'm actually worried I might be more like an early stage four since my therapist said I have lymphedema in my calves, but it's still at an early, reversible stage, so I'm sticking with stage three until someone tells me differently!

But things going against me? Most insurers deny lipedema patients surgery on the grounds that the procedure is cosmetic or experimental (fact: Recent studies have shown that the surgery has excellent long-term success rates not only in terms of aesthetics but also in terms of functional improvement, symptom reduction and recurrence rates).

Once Upon a Time

"You've come a long way, baby ..."

Boy, oh, boy, have I ever.

I have been going through pictures as I've been preparing for the insurance battle. Insurance rarely covers liposuction for lipedema because liposuction is typically considered cosmetic in nature. This is grossly unjust. No one would dream of saying that breast cancer survivors should not get breast implants because they're usually cosmetic in nature, but this is exactly what the insurance companies are saying to us: because so many women and men use liposuction for cosmetic purposes, those of us who need it for medical purposes cannot get it covered.

And make no mistake: We do need it for medical purposes. It is not easy walking around on lippy legs. They are heavy, they are painful, and, at stage three (where I am), the joints are all out of alignment because of the fat deposits and fibrotic tissue.

It hurts my heart to see how far I've come.

I've always battled my body because I hated my legs.

Hated isn't even a strong enough word for how I felt about those shapeless masses at the bottom of my body.

But I would give anything to be where I once was.

Yep, that's me. Don't judge me. It was the 90s. 

I really thought I was grotesquely fat there. I was wearing a size 2/4 up top (which you probably can't tell because I'm hiding my "gross" body in a bulky sweater). In truth, I weighed a whopping 115# at 5'7" and was, at the risk of sounding overly dramatic, fighting for my life against bulimia. I was taking fistfuls of laxatives and water pills at a time and throwing up everything I ate. I felt horrible emotionally and physically.

According to Dr. Stutz, a lipedema surgeon in Germany, as many as 74 percent of all women with lipedema have struggled with eating disorders at some point in their lifetimes. Three out of four. I wasn't alone, but I sure felt alone. I was starving myself and hurting myself constantly in my battle against my legs. (Lipedema wasn't solely responsible for my eating disorder, but it certainly didn't help matters any). 

I've been "clean" since I was 24.

A healthier, happier version of me

But I still struggle with my ED temptation on a pretty regular basis. Those disordered eating thoughts are never far from my mind. Yes, even though I'm fat now and even though my legs are even bigger. 

Bigger. 

Because these are my legs now. 

Horrifying, aren't they? It looks (and feels) like I'm wearing a "fat suit." My feet are still as thin and bony as they were when I weighed a whopping 115#, but my legs are probably three times the size they once were. My right leg is several inches larger than my left leg. The dimpling you see isn't cellulite but scar tissue. You can see where the lipedema fat cuts off right at my ankle. You can see how my calves are nearly as big as my thighs. What you can't see is how painful my legs are. You can't see how they ache and throb at the end of the day. You can't see all the bruises trailing up the sides of my legs from where I brush up against things during the day. 

You can't see the body hate that has been absorbed by every fat cell in those legs.

You can't see the hate.

Yes, I've come a long way physically. I used to be so much thinner. So much fitter (not healthier -- fitter). I'd spend hours a day at the gym. I had a physically active job. I was always moving, and I *loved* it. Now two miles of walking is about the extent of my ability, and even that requires heavy-duty compression to manage.

But in another way, I've not come any distance at all because I still sometimes struggle with the same self-loathing that plagued me 20-some-odd years ago. And you know what? That's what bothers me more. I can't help my legs. That's a disease that I did nothing to bring on myself. It's a disease that I didn't ask for, I didn't cause and I sure as hell didn't want. But the self-loathing? It was destroying me bit by bit, and if I allow it to, it will destroy me.

That self-loathing is what led me into seven years of bulimic hell, and it's what has left so much hurt in my heart. There is no healing or peace in self-loathing. The only way out is acceptance and love. You only take care of the things you love. I have to take care of myself. 

I've come a long way, baby, but I still have so far to go.