Sometimes You Don't Get Everything You Want

I almost titled this "Sometimes You Don't Get Your Happy Ending," but that wouldn't be fair.

Yesterday, I got a bit of a kick in the gut. I was scheduled for one final surgery on Dec. 21. This would allow me to get all four surgeries in one calendar year for one out-of-pocket max of about $4k. Instead, I went to my follow-up appointment and found out that my legs are still too swollen for the scheduled surgery, which was rescheduled for Jan. 25.

Next calendar year. So I'll be facing another out-of-pocket maximum for $4k or so. That's a lot of money for my family. I, quite honestly, don't know that we can swing it. Especially if I'm only going to be having one more surgery. If we're doing more than one, then I might go ahead and do it simply because the more lip fat we get out, the better I'll be in the long run.

But for one surgery?

That's an awful lot of money.

Then there's the fact that I thought I was looking at the light at the end of the tunnel. And I wasn't. I thought that in the next couple weeks, I'd be done. And I won't.

I'm dealing with so many different emotions right now as well as some major decisions. I'm also struggling with serious body-frustrations right now. I'm not sure what the future holds for me.

At the end of the day, I have had three more surgeries than I ever thought I'd have, so I am getting my happy ending one way or another. But sometimes, you really don't get everything you want. I might just have to be okay with that.

The Patterns of Healing

Now that I'm on my third surgery, I'm starting to recognize patterns.

Immediately after surgery, I'm sick. SO SICK. I feel like one wrong move is all it will take for me to throw up. By the time I get home, I'm ready to lie down. I usually fall asleep, and at some point, I snore. (I never snore. Never. My husband finds it hilarious and never fails to mention it. I suspect it's the pain meds.)

The next day, I'm sore -- stiff and sore. It hurts to sit down. It hurts to stand up. As long as I keep moving, I'm okay. The pain medicine is more or less pointless. I only take it when I lie down to rest or sleep because otherwise, it's nearly unbearable to try to roll over or move with the stiffness and soreness that develops with the immobility of sleep.

The soreness decreases with time. But I have other symptoms that never fail to surprise me. They shouldn't because they occur every single time -- but they do because I forget about them.

First, the swelling.

This is about a week after my third surgery. My lower legs are horribly swollen, and my feet resemble Fred Flintstone's. The swelling is so bad that my skin feels all stretchy, and it itches like crazy. At this point, I become obsessed with doing MLD and Flexitouch treatments to try to get the extra fluid out. It helps a little, but the only thing that really works is time. And religious compression wear. I wear my compression 23.5/7. The only reason I take it off is to shower and dry off. 

Then bruising is also pretty spectacular. I'm in compression 24/7, so I don't really see the bruising so much right away, but man, the first time I peel the compression off for a shower, I get downright woozy. Then I grab the camera because DANG, look at those bruises! I mean, come on, those are some pretty fancy bruises.

Such pretty colors! This is about a week post surgery.

Another thing that surprises me is the fatigue. This might be the most frustrating thing, too. Even as the pain and swelling subside, the fatigue seems to continue. I FEEL better, so I start trying to do more. But my body says, "Meh." I don't have it in me. I am so bone-weary. And it's crazy because it takes a while for me to figure out WHY. For a few days, I wonder if I'm coming down with something. Then I check my PMS app to see if I'm premenstrual. Then I finally realize, no, it's part of the healing process. 

I know. I'm slow on the uptake. And it happens every. single. time.

Right around the three week mark, though, I hit my stride. It's not gradual, either. I wake up almost to the day, and I feel energized. I feel wide awake and ready to tackle the world. I start cleaning like a 9-month-pregnant nesting woman. I finish projects. I start new projects. I go for walks. I try new workouts. I am ON FIRE. And I'm not even tired! I feel amazing! 

So this time, I'm trying to be patient with myself. I'm reminding myself that I'm not even two weeks out from my third surgery. Give me another week, and I will be ready to take on the world. My bruises are still healing, and my legs are still swollen. I am healing. These things take time. I'm not 21 anymore. I'm twice that, and this is a disease that compromises healing by slowing circulation and screwing up the lymph system.

But I will conquer it. I will. Because I've already gotten through two healing periods with flying colors. Three surgeries since August, and I'm hoping to have one more in a few more weeks. I've so got this. 

It feels good. It really does.

Last year at this time, I was still reeling from the diagnosis. But this year? I'm looking towards the rest of my life.

with these guys! 

Happiest Halloween

Many years ago when we were newlyweds, my husband and I went ATVing in the woods. He decided to cross a decidedly muddy creek. That might have been one of his worst ideas ever. The ATV got stuck in the mud. As luck would have it, the sky was lowering, and tut tut, it looked like rain. He tried to push the ATV out while I tried to drive it out. That did not work. He tried to rock it out while I pushed. Nope, that didn't work, either. We both tried to push it out. That didn't work, either. 

Each time we stood in the mud, another layer of the sticky, clay-like Illinois mud attached itself to our feet. My legs were getting so hard to lift, and finally, we gave up when my feet became literally mired in the muck (I even lost a shoe in it!). He went trudging off to find help while I stayed with the ATV (and my lost shoe? lol).

That's what lipedema feels like: like each step adds a heavy layer of sticky, mucky mud. Concrete. Lead. It's not so much that we are too weak to walk. It's that our legs feel so unbearably heavy that it's nearly impossible.

Every year, we trek around the neighborhood with our kids. We always follow the same basic route: down one road, across the next, up this road, back across that road, up the next road and so on. For the past several years, I've tuckered out at the same point each time, my legs feeling leaden, as though I were trudging through concrete. Or that sticky, mucky creek mud. My legs become too heavy to walk, and I have to head home. I'm overwhelmed with fatigue, and that fatigue can keep me down for the next several days. 

Not last night.

Last night, as we came on that oh-so-familiar landmark, I realized that my legs didn't feel heavy. They DID feel a bit tired, as legs that are not in good athletic condition are wont to do, but they didn't feel heavy. And this morning? I had plenty of energy. Two surgeries and 10 or so pounds (so far). That's all Dr. Buck really did, but that small amount of work has made such a huge difference in my physical well-being. It's just utterly mind-blowing.

I'm halfway through the leg process before we take a break and reassess in six months or a year, but that I've experienced such an astounding improvement makes me think that maybe this might be it. That after the next two procedures, I might be done.

Reminder: These were my legs about two months ago.
Heavily swollen, full of lipomas and extremely painful

These are my legs after two surgeries with eight liters removed --
They are deflated-looking and still lumpy,
but oh-so-much-more comfortable now.

And with compression? Well shoot, they almost look and feel like normal human legs. 

One Surgery, Coming Right Up!

In a few days, I'll have surgery #2. This one is focusing on the backs of my thighs. For lots of reasons, that doesn't sound fun to me. For one, I'll apparently need general anesthesia, which is just all kinds of nope. For another, well, I have to sit once in a while, you know?

Since the first surgery, I've had so many improvements, though. I've still got some minor discomfort (mostly feeling stiff and sore if I've been immobile too long), but it's nothing too bad. My joints are better aligned. I think the biggest improvement, though, is how they FEEL. It no longer feels like I'm trudging through concrete with every step I take.

It's hard to explain that to someone who hasn't experienced it. But when you walk through thick, sticky mud or concrete, a little bit gets stuck on your shoes each time. So you end up walking with more and more and more accumulated on the bottom of your feet. It gets harder to move. You have to get out of the mud and discard your shoes, or you'll soon not be able to walk anymore.

That's how lipedema feels. The first walk around the 1/4-mile track isn't too bad. The second lap is getting tough, and I've slowed down because my legs are so heavy. By the third lap, I'm about tapped out, and I haven't even gone a mile yet!

Now I can go a full mile without that concrete feeling, and my legs don't really all that heavy at all. I AM still weak and having to build up strength because for the last couple years, I've been more and more sedentary as I lost more and more mobility. But now I CAN build my strength up because I can physically walk again, and I can do it comfortably and, dare I say, easily.

I am really not looking forward to this second surgery, but I am looking forward to recovering from it. I am looking forward to my next round of improvements because now that I've done it once, I am confident that I will see them. Let's get this done. I have a life to live!

Ich Reise

And onward I go.

My next surgery is tentatively scheduled for October 12. I saw my surgeon, the fabulous Dr. Buck, on Monday, and I'm healing as expected. He asked what I thought of things, and I didn't quite know how to respond. It's really hard to say. I have some discomfort still, so I cannot tell if the lipedema pain is there or not. It's strange. And my legs still have a lot of lipedema fat, so they still feel quite heavy. But I think much of the post-surgical swelling is down (although he told me it could take three to six months for it to fully subside), and I've lost several pounds in the three weeks since the surgery.

All in all, I'm going to cautiously say things have gone quite well. My youngest son's book fair at his school was this week, and I volunteered two days. I spent several hours on my feet. Before surgery, I'd have come home with heavy, aching legs that were swollen beyond belief. Yesterday, my feet were a bit puffy but nothing terrible, and there was no noticeable pain. Same thing today. I'd call that a win.

I guess I'm at the point now of being ready to get the rest of these surgeries out of the way. I hate surgery. The last one left me feeling sick and ill, and the pain was far beyond anything I'd expected. The recovery was also harder than I'd expected. But ... if just one surgery can have me feeling better, then I can only imagine how much better I'm going to feel once all of them are done. Maybe, just maybe, I'll feel like me again.

Really, that's the goal of all this. Things don't often end up the way we plan them. But sometimes they end up even better. I think I'm going to hope that this time they end up better.

Healing

It's been a slow process.

In reality, I'm only 11 days out from my first surgery. They (and by "they" I mean the experts) say it takes about three to four weeks to start seeing improvements and three to six months to fully heal after liposuction. Okay. Well, I'm not a patient person. I want to see results RIGHT NOW.

Yeah. It's been a lifelong struggle.

On the bright side, I'm a pretty quick healer. As it turns out, I'm not as quick a healer as I'd like, but given my age and my health status, I think I've done okay. I'm getting around pretty well, I'm only just a little stiff and sore, and the bruises are resolving nicely.

There is still quite a bit of swelling but ...

And I think a drum roll is in order here ...

My calves are an incredible, amazing, mind-blowing ...

FOUR INCHES SMALLER!!!!!!

I know, right?

Now, he didn't really do my calves. What I think has happened is that he's cleared some of the mess clogging the lymphatics in my thighs, which has helped resolve some of the lymphedema in my calves. Which has resulted in my calves doing this incredible shrinking act. My thighs are also down a tiny bit. Still swollen, but not as swollen as they were. My weight is down four pounds. (Okay, so technically he removed eight pounds of fat, BUT remember I'm still pretty swollen.)

My legs FEEL like Jello. They are anything but pretty. They're still pretty lumpy. The left one has a big divot in it (I think either he got a bit too aggressive with the lipo on that one or its just a tissue abnormality from the disease, and either way, I just can't get too worked up about it if it means I get better function in my legs). But I can already tell they are healing.

Healing. And I think they're healing well.

The really funny thing is that immediately after surgery, I was cursing and hating myself. I felt that I'd made the worst decision in the world, that I was spending money I could not afford to do something that made my disease WORSE, not better, and that I was going to regret it the rest of my life, and that there was NO WAY IN HADES that I was ever going to do it again. Now I'm counting down the weeks till the next surgery.

No, I'm not actually looking forward to the next procedure. Not even a little bit. I get horribly nauseated from anesthesia, and the pain is indescribable. What I'm looking forward to is getting past the second stage of the process and into the healing phase. Because after that, I'll be ready for the third phase. And then the fourth.

And then maybe I'll have my life back. It's as simple as that.

Bruises, Bruises Everywhere

I didn't think I was bruised.

I'm wearing this special compression that goes from just under my bra-line to my ankles. It's "flesh colored," or a bit paler than my natural skin tone. I can see through it and easily see the marker lines that my doctor wrote on me before surgery. I can see the bandages. I assumed I'd be able to see the bruises, too.

Ha.

Because the compression is designed to leave on at all times (seriously -- and I won't get graphic here, but you're really not supposed to take it off for the first couple of days for ANY REASON. ANY reason. AT ALL), I didn't realize that I was assuming wrongly.

Holy crawdads, am I ever bruising. I'd undone a bit of the hooks-and-zippers closures on the side so that I could more easily give myself the anti-blood-clot shot, and I got a glimpse of my thigh under the compression. Whoopsie daisy.

Just so you know, I'm normally about as pale as Casper. 

What's not bruised is a scary shade of orange.

I don't know what that's about.

Since I'm only a couple days out from surgery, I suspect this is going to get much worse before it gets better. I'm soooo not going to look anymore, though, because it makes me feel fairly queasy and lightheaded to even think about. Psychosomatic symptoms are weird.

"Great Expectations"

You know how you have this idea in your head of how things are going to go? But they never go that way.

I had my first surgery yesterday. Before the surgery, I was warned of the leaking. During the procedure, they blow your legs up with saline and anesthetic and other stuff, which makes it easier to get the diseased tissue out without damaging the lymphatic system. They are rarely able to get all that fluid back out, so there can be a lot of post-surgical leaking. People have horror stories of having to line their floors with towels just so that they didn't leave crime scene trails all over their house.

I've had pretty much no post-op leaking. (I'm not complaining, mind you.) I HAVE had a lot of swelling. I'm puffy like the Michelin tire woman. I am actually so puffy and swollen that I'm waddling when I walk. It's funny. I looked in the mirror last night, and even my face was all swollen. It was also yellow, but I figured that was just from being so icky-feeling.

Pain was expected. I knew that surgery hurt. I've had more than my fair share of surgeries. But whew boy, I didn't expect the back pain. For some reason, my lower back was aching so much that I was in tears. It was worse than my legs, which were hurting pretty badly on their own. I kept scooching around in the recovery area trying to fix my back and find a comfy position, but nothing worked.

Nausea? I always get nauseated from anesthesia, which is why I always tell the anesthesiologist that I always get nauseated from anesthesia. That is supposed to be their cue to put medication in the line so that I don't get sick, but I really don't think they do. I think it then becomes a challenge to see if they can be the first anesthesiologist to knock you out without you getting sick. Let me tell you -- no. Not gonna happen. The poor nurses in the recovery unit went through three different types of meds to quell the queasies before the nurse in my regular room finally shot me full of Haldol (which is usually given for much different reasons). It didn't work right away, but it DID work.

And sleep. I opted out of general anesthesia because it hangs on me like a bad date. I opted for the local and twilight sedation (also something the anesthesiologist didn't approve of, but she kindly agreed to it when I explained to her why general was really not on my list of favorite things in the world). It worked like a charm, but I was drowsy the rest of the day. I didn't expect that. I just kept drifting off to sleep here and there, and when I finally got home, I fell asleep again and slept from late afternoon until about 4 this morning. Yup. And then I went back to bed around 8 and slept until 9 or so. I have a feeling I'm going to be sleeping a lot over the next few days as I try to work the rest of this stuff out of my system.

As for work ... I intended on working through my recovery period, but I'm afraid that might have been optimistic of me. I work from home, which makes it a bit easier, but at the same time, I mostly just want to rest and drowse. I do not want to work.

Sigh.

I think I'll just be taking this one hour at a time for now. I'm not even 24 hours out from surgery yet. Sometimes it's okay to not push yourself. Sometimes it's okay to take it easy.

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. 

First Things First

Or second. Or whatever number.

I don't do things in order. I like to play by my own rules.

Except I don't feel like I know the rules anymore.

But as I was saying: first things first. What's lipedema? The simplest answer, of course, would be: big, fat legs. But of course, that's the most simple answer, and it's not necessarily the most accurate. That's because some people have naturally big legs. Big legs are a normal variation and not always or even often a sign of a problem. They're just a different body type. Some people have long torsos, some people have long legs, some people have big legs, some people have big bellies, some people have long arms, some people have long necks ... these are all just differences that make us unique and beautiful.

Big, fat legs are just the most obvious feature of lipedema ... to other people. To those of us with lipedema, they are just one part of a series of symptoms that may have plagued us since our early years. We often have disproportionately small bodies with much-larger legs, hips and buttocks compared to our upper bodies (the lower abdomen and arms often get in on the fun in later stages). The fat can develop a bumpy or mattress-like appearance (like cellulite ... only much worse than any cellulite you've seen on the front page of the Enquirer). Our legs tend to swell and become quite heavy-feeling, particularly late in the day or after we've been on them all day.

Pain is a common feature. We may have pain upon light touch, or the pain may be constant, like a deep, throbbing or burning pain. We also frequently have bruising that seems to occur for no reason at all. If there is a reason to bruise -- maybe we've bumped against a table --, then expect the bruising to be far out of proportion to the injury. Inside your legs and arms, you may feel little marble- or pea-like bumps. They're hard, unlike the smooth tissue in the rest of your body. These bumps might feel like frozen peas in a bag or styrofoam balls in a beanbag chair. They can even be as big as marbles or even larger. Palpate your leg gently or just run your fingers over the fat to feel them.

The most annoying part? Our legs may tend to get fat even when there is no change to our diet and exercise. In fact, maybe we're dieting and exercising and losing weight everywhere else ... and yet, suddenly our legs are starting to look fatter. This. Really. Happens. Silly lipedema. Someone never told it about calories-in/calories-out. (Lipedema should talk to some of my previous doctors!)

Do any of these symptoms sound familiar? You're not crazy. But you may have lipedema. Only an experienced doctor can tell you for sure, so your first task is to find one. Unfortunately, that can be a big job. Not all doctors are familiar with lipedema (yet!). So do your homework. Find a doctor who does know and recognize lipedema, and go to him or her. Yes, even if that doctor lives halfway across the country because an accurate diagnosis may just be your most important first step.

But remember, not all people with larger-than-normal legs have lipedema. You may just have a normal variation. And that's good news. Really, it is! Because lipedema is a chronic, progressive disease, and it can have some pretty serious complications associated with it. We don't take care of things we don't love, so try to make peace with your body even if there are parts you don't totally appreciate (like big fat legs!). And take good care of yourself. You only get one body and one life. Cherish them both.

MLD

There are few therapies available to treat lipedema. One is MLD. Also called manual lymph drainage, this is a special type of massage designed to, well, as the name suggests, manually drain the lymph nodes. It sounds yucky. In reality, it's really just a really gentle type of massage. In fact, it's so gentle, that you really don't even feel it. The entire process takes about 45 minutes to an hour. By the end of it, I usually feel a bit lightheaded, dozy and weak, but by the time I get home, I'm mostly just thirsty and tired.

Manual lymph drainage, unfortunately, doesn't really do much for us. In theory, it could keep us from getting worse because it keeps the lymph from pooling around the fat cells. But in reality, we aren't really swelling from lymph alone, so it's not going to cause our legs to actually shrink. It's just going to prevent the disease from worsening -- in theory. I've only had a few of these treatments so far, and for me, it's just a part of the process leading up to surgery.

Surgery.

Even the word, at this point, terrifies me. While I look forward to it on one level because I do believe that it will help me regain a certain degree of activity and mobility, there's another part of me that really dreads it. I've seen a lot of "nonsuccess" stories -- women who have not had great results. They've had lipedema fire up elsewhere in their bodies. They've had worsening swelling in their legs. They've gone on to develop full-blown lymphedema. They have had infections. They've struggled with weight gain and pain. They've not found the happily-ever-after they so desperately wanted.

When you drop $20k on multiple painful surgeries, you want happily-ever-after.

But it's not guaranteed.

So yeah, I'm scared.

Then again, some have found incredible success. They walked a mile the day after surgery. They hopped right back on the horse and got right out there. They lost weight once they got the lip fat removed. They were able to be active again. Some were able to jog for the first time in their lives. Some ran marathons! Some feel like they unbottled the fountain of youth.

Which group will I be in?

So MLD. This is where I am right now. Step by step. Not even one day at a time right now but one step at a time. It's a long, arduous process, and I feel like I'm racing against this demon in my own body. I don't know when the disease is going to flare up again, and I cannot speed the treatment process up any faster. So every day, I wake up, I put on my compression, I eat my RAD diet, I exercise, I do my Flexitouch treatments, I use my bouncy ball for rebounding (good for lymph flow!), and I pray like crazy that I'll beat it.

I will beat it.

I have to.

Because there's a whole world out there waiting for me.

Pushing Yourself

If anyone has an excuse to sit back and say, "Meh," when it comes to physical activity, that would be me, right? Too much exercise can leave me hurting for days -- and I don't mean that good kind of hurt that comes from sore muscles. I mean a stinging pain and deep, throbbing ache that many of my lippy sisters will understand on a deep level. I'm not sure what causes it or if even doctors who study this disease really know. My theory is that the lymph fluid that clogs our system so thoroughly pushes on the nerves and makes them hurt, and I've come up with this theory since observing that intense activity tends to cause hella swelling in me. I tend to gain an average of 10 lbs. after a good day of exercise -- and that's on average. Really hard activity or several days of exercise could leave me 15 lbs. heavier, and it usually takes a week or two for all that fluid to work its way through my system and out of my body.

Anyway. It's as good a theory as any other.

But forget the pain because to me, moving isn't optional. Remember my move-it-or-lose-it post? I'm terrified of not moving. The pain isn't pleasant, and it can be disabling at times, but sitting on my bum is a scarier proposition because sitting on my bum is a guarantee I'll get worse. Sitting there and doing nothing allows my muscles to atrophy. It will allow my body to get FAT fat on top of the lipedema fat. And while I'll admit that I've already got some regular fat to deal with, I'm not about to let that situation get any more out of control than I absolutely have to.

The fact is, we lippy ladies are at high risk of developing secondary obesity. That's not a judgment. And those women who do develop secondary obesity have an even harder time of it because then they have to deal with all the health risks of that on top of the health risks of the lipedema. It's not always preventable, either. I know, I know -- people think that it's as easy as calories in/calories out. I wish it were, but for those of us with fat disorders, we have a lot more going on with our bodies.

So I try to get some exercise in every day. It isn't always intense. In fact, it rarely is because of that whole pain thing. But every once in a while, I do like to push myself to my limits, and for me, that was yesterday. I went to Cahokia Mounds, which is actually pretty interesting apart from the physically challenging part. I took my big ole lippy legs and climbed all the way to the top of Monk's Mound, which, if I may say so myself, was a bit of an accomplishment (hey, not even all regular non-lippy people can manage it!).

Across the river (that blue thing down there), you can see the Arch. 

Not in this picture, sadly, though I tried to get it.

It's kind of incredible --

Like a melding of old and new cultures.

Of course, by the time I actually reached the top, my legs were already in full "SWELL!!!!!" mode. I sat for a bit and wondered if they were going to completely balloon up and fly away without me. 

Look at them! Yikes! After I realized they were going to stay firmly attached, I decided it was time to head back down and walk around the smaller mounds. There are several trails winding through "woodhenges" and many smaller mounds. The whole area is just so pretty and peaceful (apart from several large groups of sweaty school field trips that happened to be there yesterday). It really is a nice place to go and walk around. I can only imagine what it must have been like when it was one of the, if not THE, largest cities in the Americas.

All in all, we had a great day. Oh yeah, I had a little partner with me. He has MUCH better endurance than I do. Then again, he's 30+ years younger and has normal, healthy legs. :D

Lipedema is a challenging disease. It can really hold you back from doing the things you love. But it doesn't have to keep you housebound and unable to do everything you love. I may not be able to run up and down those steps on Monks Mound, but I can still haul my lippy heinie up and down them. You may not be able to walk up and down them, but you might still be able to walk around the trails. And if you can no longer walk? Get that scooter out, and get yourself some sunshine. Push yourself, and test your limits. You will feel so good when you can accomplish something you never imagined you could.

Use It or Lose It

I'm sure you've heard this phrase a time or two. When it comes to lipedema, you have good days and bad days, and you have to take them as they come. The last several days, I've spent recovering. I did little more than self-nurturing -- magnesium baths, MLD, Flexitouch treatments and rest. My brain is still the brain of a 42-year-old woman, but my legs seem at least twice that age. And it's hard to reconcile that.

Then you hear "Use it or lose it," and you think: "So this is my fault? I'm dealing with this because I didn't move enough?" It's an easy trap to fall into: self-blame. Lipedema is NOT your fault. While an unhealthy diet, sedentary lifestyle and obesity can complicate and aggravate lipedema, they aren't the only things that can contribute to it. Stress, inflammation, illness and other things can also worsen lipedema and speed its progression -- and doctors believe that other factors may also play a role.

But use it or lose it -- does that apply here? In a word: yes. One of the best things you can do for your body is to keep moving. You may not be able to run marathons any longer (although you might!). But you CAN still move. If you can still walk, get out there and walk. If you can no longer walk long distances, walk around the block or around your house or around the room.

Biking is a great low-impact activity that is easy on your lippy joints (excellent if you, like me, have hypermobile joints on top of lipedema). Swimming is also a great activity that is easy on your joints and takes some of that weight off your lippy legs. Even better, the pressure of the water against your skin stimulates the lymph system, which will push fluid out of your body at a shocking rate.

Even if you are no longer fully mobile, you can still find ways to move more. Grab some light weights (or soup cans! Or just make fists!) and move your arms.

While it may seem tempting to hide away in your house forever -- girl, trust me, I've been there, I KNOW -- that's not a workable solution, and it will only hurt you in the long run. Instead, keep moving. Keep walking, biking, swimming, waving your arms, doing whatever you can to move forward in your life. 

Recovery

I rather thought that I'd wake up this morning fresh as a daisy. Sure, I was bushed yesterday, but today would be a whole new day, right?! Ha!

Stage three lipedema is hard on a body. The extra weight alone is difficult to lug around on my small frame. Add in the swelling, the pain, the fatigue and the general emotional upheaval from all the ups-and-downs of everything ... and well, this woman had a rough day. But I went to bed early last night, and so this morning, I should have been fine, right?

The best-laid plans ... first, my phone rang long before my alarm went off. My husband wasn't feeling well and was on his way home. Okay. Might as well get up and get the kids' breakfasts ready. Then the kids started getting up, and sure enough, every last one of them is also sick. (with a cold -- nothing life-threatening). Sniffles here, there and everywhere.

Once I got the older two out the door, I settled down with the youngest, who is homeschooled, and we began his day while I finally -- with feelings of great trepidation -- strapped on the Flexitouch. Generally speaking, the Flexitouch, a lymph pump, actually relieves the pain in my big fat legs. But when I have gone some time without using it, the pain can worsen. My best theory is that it's because the fluid is compressing nerves and the pump pushes the fluid out, which causes the nerves to sort of "come alive" again -- the pain is the same kind of pins-and-needles pain you get when your foot "wakes up" after falling asleep.

I don't think I'm going to bounce back today. I actually don't know that I'll be bouncing back tomorrow, either. It might take until Wednesday or Thursday. And that scares me. It's scary to know that my big fat legs are in that much control of my life. But they're really not. I still am. I need to take care of them properly so that they don't take over me.  So for the next several days, they're going to be gently massaged by the lymph pump, I'm going to ask my poor sick husband (nicely) if he can help me with my MLD treatments since his hands are bigger, I'm going to take magnesium baths nightly and I am going to wear compression 24/7 except when I'm on the pump or in the bath.

It'll take time, but I'll heal and get back where I was. Because I don't hate my legs anymore. It's not their fault they're like this, and it's not my fault either. It's a disease, and it's my job to keep that disease at bay so that my legs and I feel our best.

Yeah, that's a bruise. Sexy, innit? Spontaneous bruising is a huge problem for lippy ladies. 

FDRS 2016

Coming back from FDRS 2016 in STL is like coming down from a sugar rush.

Not that I'd know that. Sugar is something of a big sin along the lines of, oh, I dunno, cocaine or something, in the lippy world. That stuff is bad news. It triggers inflammation in our poor legs, and that inflammation gets those angry little adipocytes all ramped up to do even more damage.

Because they haven't already done enough?!

As I said, though, whew, it's been a lot. A lot to process. A lot to think about. So much information.

I met lots of wonderful women and learned lots of new things. I learned about taking care of myself in ways I hadn't known before. I heard from health care providers who talked to me -- and others like me -- with respect. Do you understand how freaking HUGE that is? RESPECT!

Fat people don't often get respect from health care providers. I guess they see the fat and assume we're non-compliant. We're fatty fats who fat. They don't see us as people. They see us as diseases waiting to happen. They write us off. And I get it. You hear hoofbeats, and you assume you've got a horse. You don't bother looking for a zebra. (And writing horses off is just as problematic, but we will discuss that in a later post. As far as I'm concerned, any time you have doctors treating people disrespectfully, you've got a bit of a problem).

But that means that sometimes, zebras are missed. I'm a zebra. My name is Andrea, and I have a fat disorder. I have lipedema, and that means I have big fat legs (and a big fat butt and big fat arms, but who's counting?). My lipedema went undiagnosed for 30 years because doctors assumed I was a noncompliant fat person. They didn't believe me when I told them I had been on a diet for more than 20 years. They didn't believe me when I told them I exercised regularly. They didn't look at my tiny hands or my bony feet. They didn't notice my (comparatively) slender upper body or my visible collarbone. They didn't see any of that. All they saw was the number on the scale. And my fat.

And so that's all I saw: my fat. I have a really hard time seeing my body as it is. My body image is so distorted that I can't even recognize myself in pictures or in the mirror sometimes. That's hard to admit. It's even harder to live.

But this weekend, I was surrounded by a group of some of the most amazing women I've ever been around. And many of them had the same disease I have. They were humorous and graceful and you know what else they were? They were beautiful. I was inspired.

Now I have a huge binder full of notes and print-outs and pamphlets, and I hope you'll excuse me as I go study them a bit more. Also, I have sore legs from all the walking and no-pumping and no-compression (because I really packed light and lived to regret it), so I need to put them up.