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.