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.