Survivor's Guilt

Survivor's guilt, as defined by one online dictionary, is "A deep feeling of guilt often experienced by those who have survived some catastrophe that took the lives of many others."

Two weeks after my pre-surgical consultation, I got a thin envelope in the mail from my insurance company. I knew right away what it was: my denial. Good! I thought. Now I can start on my appeals and get this puppy moving forward. It was disappointing for sure, but at least I had an answer. Then I opened the envelope.

It wasn't a denial. My insurance company approved me. Without a fight. That's practically unheard-of in the lipedema community. I've heard of people having to go through appeal after appeal, finally ending up in third-party review, some even needing to get attorneys or patient advocates to fight for them. And still, many fail. Their insurance just gives them denial after denial.

No one should have to fight so hard to get essential healthcare.

In the insurance world, liposuction is still often seen as a cosmetic procedure. While early-stage lippy ladies can and do get cosmetic results from their liposuction, this surgery is not intended to make our legs look better. I'm at such a late stage that nothing will ever give me conventionally pretty legs. I'm simply wanting functional legs. Liposuction will, hopefully, give them to me.

I guess my insurance company recognizes that fact. I have many things going for me that maybe other lippy ladies don't. For one, the hospital through which the surgery will be done is part of the network that employs my husband. Both the hospital and the doctor are in-network for my insurance. I'm also at a fairly late stage but I'm not yet suffering from a lot of generalized obesity, which can mask the condition and cause insurance companies to insist that women lose weight first as a conservative treatment measure (which, to be fair to them, MIGHT help reduce the pressure on the joints -- the problem is that the lipedema fat skews the metabolism and makes it really hard to lose regular fat as well, leaving women with few options apart from weight loss surgery).

But they approved me. And while I'm thrilled to my toes, I'm also pretty scared because, well, surgery is scary. On top of that, I feel guilty that it was so comparatively easy for me. I went to the doctor, submitted to some essentially naked pictures (ugh, ugh, ugh), and he sent the pictures and my records to the insurance company.

On a side note, what does that say about my legs that the insurance company doctor took one look at them and said, "Holy heck, someone get this woman some lipo stat!!!"

There are so many women still fighting for their surgeries, and it's hard not to feel a little (lot) guilty that it was so easy for me. But at the same time, maybe the ease of it is a sign that the times, they are a-changing. Maybe more insurers are recognizing that this is a serious, debilitating disease and that paying for surgery is a lot cheaper than paying for joint replacements, weight loss surgeries, vein surgeries, and the numerous other serious treatments and procedures that can become necessary once the disease starts causing complications. And it will. Unless a woman is lucky enough to stay in stage one or two (and many women do), late-stage lipedema invariably brings terrible complications with it. 

I'm lucky. But I shouldn't be. Safe, timely, appropriate healthcare should be our right. We pay for our insurance -- a lot, if my premiums are anything to go by. So it just seems fair that it's there for me when I really need it. I hope that soon every lippy lady will be able to be diagnosed and get whatever proven treatment that she and her doctor deem safe and appropriate for her needs. (I say proven because obviously insurance isn't going to want to pay for chicken sacrifices -- but early liposuction studies have demonstrated that its benefits last at least seven years and likely more for lipedema patients). 

Now, the day after I got my approval, I got a much bigger envelope in the mail. This envelope had something different in it: a denial. The insurance company was happy to pay for my legs but not my abdomen or my arms. They say there's not enough distortion in them to qualify for treatment yet. Well, it's a start. And while I'm not worried about my arms -- they're absolutely hideous and quite painful but also still completely functional -- I do worry about my abdomen. I see lippy lumps starting to grow there, visible lumps, and it concerns me because abdominal fat can strangle the organs and increase the risk of heart health problems. So while I might be happy to back-burner my arms, I will likely appeal the torso procedure once my legs are done. I don't want to die of heart disease thanks to lipedema. I want to live a long, healthy and ACTIVE life. 

Lemme Check My Couch Cushions for Spare Change

Just got home from my appointment. Whew.

Nothing quite like standing in the middle of a fluorescent-light-filled office with your giant lippy legs hanging out to be examined. No matter how many times you tell yourself that this is a doctor, he sees lippy legs all the time, it's totally okay ... it just doesn't feel okay. It's humiliating.

But.

I got my quote.

That's three surgeries total. Two on the thighs and one on the calves. We'll reassess at that point. 

For now, though, it's a matter of wait-and-see. The insurance company may green light me and say it's a go. In which case, I'm on my way to getting my life back and sooner rather than later! But they may not. A denial is a very real possibility.

This is where we are. Lipedema is a day-by-day disease. It's chronic. It doesn't go away. It doesn't magically get better. You just do your best with it where you are now. So that's what I'm doing. It's really all I can do.

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. 

On Positivity and Inspiration Porn

One of my primary goals for blogging was to inspire other women battling this disease. But as it turns out, one can't always be positive and uplifting. As much as I wanted to only show the happy, sunny side of me and my battle, sometimes it's more honest to show all the sides.

Today's one of those days.

Sometimes lipedema is just so damned hard. Last night I looked down at my arm and nearly started sobbing right then and there. You see, I saw the beginning of a cuff. A cuff is what is known as the cut-off line between lipedema fat and the normal body. It's what gives the appearance of a person wearing a fat suit.

Cuffs are most commonly seen on the ankles, like in this photo:

But because lipedema can affect the arms, too, they can develop there as well. Before now, I thought I only had lip in my upper arms. In fact, I recently started wearing compression to manage the lip in my arms. 

It's not attractive, but it does the job. 

So last night, it was shocking to see the cuff on my wrist. I have lipedema not just in my upper arms but also in my lower arms. And it's not just early lipedema: I gently palpated my arms and felt the telltale nodules well down the arms. 

I choked back a sob.

My body is being taken over by this horrible tissue. This toxic fat is taking every part of me and making me unrecognizable even to myself. 

You may think I'm overreacting, but this is what lipedema looks like once it reaches advanced stages in the arms:

When I say this is a cruel disease, I'm not kidding. It's a horrible disease. We don't ask for it. We don't do anything to deserve it. Most of us have spent our entire lives trying to diet it away, but it doesn't respond to diet and exercise like normal fat. There is no cure. There are few treatments, and those that do exist are usually not covered by insurance. 

I try to stay positive to give others hope that there is life with lipedema. But I get discouraged when I realize that life with lipedema isn't always easy. That it's an uphill battle. The only hope I have right now is to raise awareness. To fight for recognition. To fight for coverage and for respectful treatment and for research and for a cure. 

Lipedema is a fat cancer that is destroying an estimated 3 to 11 percent of women's bodies. It is affecting their lives and their self-esteem. It is holding them back from doing all the things they could do. It is keeping them from living active, healthy lives. It is preventing them from enjoying their bodies and their families. We should be able to do something about this.

I'm not your inspiration porn. I am a fighter, and I will not let this get me down, but I need your help. Please help me raise awareness. 

Lipedema: A Get-Out-of-Fat-Free Card?

I've got a weird-shaped body. When I was younger, I had a very definite hourglass figure. It garnered a LOT of attention. Sometimes it made me uncomfortable. Sometimes it didn't. I still have an hourglass figure, but it's grown to cartoonish proportions. Even my chest has gotten larger (as they do), but my waist has stayed comparatively small (notice I said "comparatively" -- I admit that I've grown a bit around the midsection. I'm a 40-something-year-old woman who has had multiple children and a disabling disease. Give me a break here, won't you?).

See? Cartoonish proportions.
 We won't even begin to discuss what's going on in the leg region. 
Also, notice my awesome shirt.
Awesome shirt is awesome.

Maintaining a healthy weight isn't always easy at the best of times, and for someone with lipedema, it's all but impossible as the disease progresses. In fact, the average woman in stage three or four has a BMI over 40. That's morbidly obese. That doesn't mean we're all just porking out on every bit of food we see. In fact, those of us who have been diagnosed usually eat a really healthy diet because of our diagnosis, and we exercise. Our weight is so high because of the lipedema fat (which is extraordinarily dense) and because of the massive swelling that occurs anywhere the lipedema and, later, lymphedema is.

Now, all that said, back to proportions. I recently had an uncomfortable discussion with a woman who decided that she had lipedema. June is Lipedema Awareness Month, and I've been posting on my social media pages about it a lot. I really want women to learn about it and talk to their doctors if they think they have it, but I also want the general public to learn to recognize it so that some of the stigma is lessened. It is unbelievably painful to be labeled as fat and lazy when you have a disease that causes the "fat," a physically painful, debillitating incurable disease. A disease that is poorly understood, rarely recognized and has few treatment options. I can give you lots of reasons that fat, in general, should be destigmatized, but this is my blog about lipedema, so I'm going to stay on topic: We need more awareness so that sufferers don't have to be crushed under the shame AND the weight of the disease.

She couldn't really understand why someone with a round body and stick arms and legs probably didn't have lipedema. The fact is that body type really does come into play. Women with lipedema do come in all shapes and sizes -- that's a fact. But, generally speaking, the lipedema fat tends to accumulate on the legs first, so legs and hips tend to be disproportionately larger than the rest of the body. Even if they are not, they still have a characteristic shape and texture (lumpy, bumpy). She's having a hard time getting a diagnosis (seen one doctor and one specialist already and will probably continue seeing more in her search for her "get out of fat free" card -- seriously, that's what she calls lipedema). But that's probably because she (most likely) doesn't have lipedema.

For most of us, we struggle to get an accurate, respectful diagnosis because the disease is so rarely recognized in its early stages and so easily confused with obesity in its later stages. Personally, I find it offensive to call it a "get out of fat free" card. When you have lipedema, you don't get out of fat. You live in an ugly, painful suit of fat the rest of your life. You never get out of it. And while you may know it's not your fault and that it's a disease, others don't. So you get to live with their ignorant judgments, too.

It feels like an uphill battle sometimes.

Happy Lipedema Awareness Month anyway. We'll get there someday.