Here I Am, There I Was

I had a follow-up with my PS yesterday. It was just a quick visit to make sure I was doing well. I am.

This has been an incredible journey. I realize I haven't posted much lately. It's hard to say why. I guess because some of the post-surgical stuff has been difficult. Not so much physically but emotionally. Although physically, it was also tough.

No surgery is necessarily easy. Lipo for lipedema is unlike regular lipo. Liposuction is typically about removing a little bit of fat (a liter or so) and sculpting the body. It's not so much about what you remove but about what you leave behind.

Liposuction for lipedema patients is almost butchery in comparison. The surgeon goes in with a goal of removing everything -- the surgeon tries to leave nothing behind. Any lipedema fat that remains has the ability to regrow and mutate again. If it's left, it will once again take over the body. So sculpting and creating beautiful legs just isn't the end goal.

In addition, the surgeon is taking a lot of fat out. In comparison, the leg of an average-sized person weighs about 26 pounds. A woman with lipedema might have about 12 liters of fat removed from both her legs (or 26 pounds of fat) and still have large legs left. In fact, I had 15 liters of fat removed from my legs (and still have big legs).

Before surgery, I rarely took photos of myself because I was so ashamed of my legs. So the night before my first surgery, I asked my husband to take a few "befores."

before the first surgery

I wanted to cry when I saw them. They were so ugly. Hideous even. The lumps and bulges were awful, and my legs bent out at the knee because there was so much fat on my inner thighs.

But the "ugly" was only part of the problem. My legs weren't functional anymore. They were painful and sore and swollen. The right one was several inches larger than the left one, and I shuffled when I walked because they were so malformed. How any doctor looked at my legs and thought they were normal is beyond me. 

Shortly after the first surgery, I asked my husband to take another picture so that I could see if there were any visible changes. 

Shockingly, there were. My legs were still quite large, quite lumpy, quite ugly, but they were already noticeably better. For one thing, my lower legs no longer bowed out quite so significantly at the knees because my PS focused his efforts on my inner thighs. The swelling declined dramatically, and my "knee cliffs" or giant pads of fat over my knees, had been reduced.

The next surgery was on the backs of my thighs, and I don't have too many pictures, but the progress after the third surgery was even more noticeable. The misalignment at my knees was now totally gone. My upper legs were still lumpy with lipomas, and I still have the large fat pads below the knees (and I do to this day because that area is far too fibrotic to suction). He removed the saddlebags and hip pads that were growing and did more work around my knees. All of these growths can cause significant dysfunction because they affect the way the joints work, and because of the way the fat is encased in lipomas, it can't just be lost like normal fat. It's really sucky. No pun intended.

I had significant post-surgical swelling after the third surgery (at this point, 12 liters of fat had been removed from my legs), so we had to wait several months for him to do the last surgery, which finally took place in February 2017. 

The final picture was taken in June 2017. 

The swelling is almost all gone. I still have large knee pads and significant lipomas in my thighs. I have severe fibrosis in my calves. I have terrible loose skin in my thighs, too. My legs are ugly. UGLY.

But they work. 

THEY WORK.

And really, that's what I care about. 

My PS told me that the longest term study they have at this point shows that the fat does not come back 15 years after surgery. So I can be confident of at least 15 years of mobility, function and comfort. He said that I may have some symptoms return that we can address as they occur, but the fat should *not* return. We discussed diet/exercise/swelling management strategies, all of which I'm already doing. 

I feel good about things. 

I've even found ways to hide the worst of the ugly legs, lol. 

Cute dress, anyone? 

So yeah. Life goes on. This is an ugly, awful, life-altering disease, but I was one of the lucky ones. I had insurance that made treatment not just a possibility but a reality for me, and I will be forever grateful for that. It shouldn't be that way. All women should have access to proper diagnosis and compassionate lipedema care. 

Flying High and Crashing

I recently had my post-surgical follow-up. Since my fourth surgery, I have felt good. Incredibly good. Once the immediate pain of the surgery wore off, I began to ease back into a workout routine.

As I've mentioned previously, I've always been an active person. I haven't always been a thin person, but I have always been active. I do not enjoy leading a sedentary lifestyle, and when my lipedema kicked into high gear and progressed so quickly, it was like a kick in the gut. The idea of being housebound was devastating to me. I could live with my body changing, sure, but to not be able to go hiking or to spend all day wandering in the woods was more than I could bear. The goal of my workout routine was to get back to where I was before all this happened. I knew I wouldn't get there overnight, though. I am still healing, for one thing, but I'm also older, and I still have a lot of lippy fat and regular fat on top of that. I'm a work in progress. I'm being realistic.

So I started with short walks and bike rides. My husband and I have enjoyed seeking out new trails, and he's been challenging me with hills (the jerk!). I've built up to longer distances and more challenging paths. It feels so good to move my muscles and to wake up in the morning feeling just a bit stiff and sore. I'm moving again! I'm feeling like me again! I see a light at the end of the tunnel. Can you imagine how amazing that feels?

When I went to see Dr. Buck for my follow-up visit, I told him that I felt like he gave me my life back. That's about the only way I can explain it. He literally gave me my life back. He returned something that had been stolen from me by this miserable disease. I didn't ask for lipedema. I didn't want it. I'd lived a healthy, happy, vibrant life until my mom died.

People always assume you do something to bring it on yourself. They blame you when things go wrong. I guess it's their way of comforting themselves that it won't happen to them. Fat-shaming is the same -- if you're fat because you ate wrong or were lazy, well, then, of course they'll never get fat because they eat right and exercise. I'm here to tell you that's not always true. I was a vegetarian for a good part of my life, and I never ate processed foods of any kind. (Heck, I had a full-blown eating disorder for 7 years!). I exercised regularly and lived an active life.

This is me at 23/24 weighing a whopping 115# at 5'7".

I wasn't fat. But I had fat legs.

I did not bring lipedema on myself. Why do I say that? Well, because apparently many people still believe that sort of thing. People such as my doctor. Not Dr. Buck. My GP.

My lipedema followed a pretty predictable pattern of progression in many ways. Its onset was at puberty, as most women's is. But I stayed in stage one until I became pregnant. I had eight pregnancies altogether, and I progressed slowly but surely to stage two. 

Check out those giant stems!

I wasn't prepared for my mom's death, which sent my legs rocketing off into a whole other dimension. No, really, I progressed almost overnight. I began to gain one, two pounds a WEEK. That's not an exaggeration. I was barely eating due to the stress of the situation, but my legs were just growing and growing. I wasn't paying much attention to them. I kept buying stretchy pants, but I wasn't buying new tops. Yeah, it didn't even register with me at the time how strange that was. Then my arms joined in on the fun. Come on, now!

Because I wasn't eating more and was exercising the same, I finally scheduled a doctor's appointment. "What's going on with me?" I asked him. He responded with the classic, "Eat less, exercise more." "But I'm not even eating 1400 calories a day." "Oh, I promise you that you are." "No, I'm really not. I use MyFitnessPal and count every calorie." "You're just measuring wrong." It was then that I realized that I needed a new doctor, so I found one.

As my legs got bigger, moving got harder. Finally, I gave up. That's when the rest of me got bigger. I've never completely given up on eating healthfully, but it's definitely gotten harder maintaining a healthy lifestyle. For one thing, exercise of any kind was virtually impossible. And when you're not able to move, your calorie count is just about nil. So ... yeah, I gained weight. I just did. I'm fat now, and I accept that. It's something I'm working on.

Anyway.

Then yesterday, I had my annual checkup with her. My last appointment with her was a year ago, and that one didn't go so well. First, she fat-shamed me and spent half the appointment trying to find a fat-related disease for me to have (spoiler: I don't have one). Then, she tried to pressure me into a mammogram even though I am nowhere near 50 and have no risk factors beyond my fat, so I'm really at an average risk and shouldn't need one until 50 unless I want to go through unnecessary tests, biopsies, etc.

Yesterday was the same song and dance with an extra dollop of fat-shaming PLUS a healthy dose of praise for my "weight loss," which wasn't really weight loss at all since it was liposuction. OH! And she always insists on taking my blood pressure in my upper arms, which is horribly, horribly painful for me due to the lipedema. She then wrote an order for me to get a mammogram because I'm "high-risk."

I spent the rest of the day crying. I have felt so incredibly good since my last surgery. I've been working towards getting back to ME. I've been rediscovering my active, healthy lifestyle and enjoying everything I used to enjoy only to get kicked in the teeth by this woman who thinks she knows what my problem is (hint: No, it's NOT laziness and gluttony. It's a fucking disease).

I think it's time to find a new doctor.

Because here's the deal. I have had this disease for more than 30 years. It was not diagnosed for most of that time. Had it BEEN diagnosed, I never would have GOTTEN fat. I'd have been treated decades ago. And then I'd have been one of those smug, self-satisfied snots who walks around feeling superior to everyone else because I stayed skinny with my amazing powers of exercise and diet. Oh yes, I would have! But I wasn't diagnosed because neither my current nor any of my former doctors had ever recognized or heard of lipedema.

And you know what? I don't really fault them for that. But here's what I do fault her for. Not acknowledging or educating herself on it now that she HAS heard of it. She has had access to the information for more than two years now, and she's not availed herself of any of it. Instead, she keeps battering me about the head and treating me as though I am the problem, not my disease. Well, guess what? My disease is being treated, and I'm losing weight. I'm not losing weight because I'm suddenly, magically compliant with her recommendations. I'm losing weight because I finally found a doctor who TREATED ME.

That's like praising a diabetic for finally eating right when in reality, he's been eating right all along. He just needed a correct dose of insulin to get the energy from the food into his body's cells.

Well, I just needed functional legs to move my body so that I could expend the proper amount of energy. Now that I can move properly, just you watch.

Spinning My Wheels and Flashing my Headlights

I'm in a weird place. I'm not fully healed, but I'm also not undergoing any surgeries right now. I'm about two months out from my last surgery and about three weeks away from my next one. My body is finally starting to feel back to normal. The initial changes I saw in my legs have started to ... well, I don't want to say subside. But my legs now seem like their "new normal." I've gotten used to them, I suppose.

There's definitely a physical difference. They're no longer nearly as heavy or draggy, and the pain level has decreased (but alas, is not entirely gone). They still look pretty awful, though. In fact, in some ways, they almost look worse. There are some horrible contour issues. The lumpiness of the lipomas has decreased, but due to the surgery, I have huge wavy areas on my thighs. This is ... really ugly. But does it bother me? Meh. I can't really say that it does. When you have horribly disfigured thighs, you just learn to deal with it.

Now. There IS another part of my body that has also changed dramatically. At the FDRS conference, this was very briefly mentioned. I dismissed it out of hand because I assumed this was a surgical side effect that only affected women who were of a slightly different bodily persuasion. In other words, built differently than I am.

I've always been busty. I began sprouting a chest when I was in third grade. I was a full C cup in 7th grade and regularly warding off accusations of "bra stuffing." This might not seem shocking these days when girls do seem to be developing earlier, but in the mid-1980s, most girls were barely in training bras at 12. By high school, things had really started to bloom. At any rate, I hit my 20s with large DDs and things seemed to level off.

Until I had children. Breastfeeding makes some women shrink, but it makes others grow. Yes, I was a grower. I bloomed even more and grew to an H cup. This was, well, rather ridiculous. Here I was, in my mid-30s, growing by leaps and bounds.

Apparently, liposuction can have a similar effect. Not on all women but on some. For whatever reason, I dismissed it as a possibility. I really did assume that because I was already fairly busty, I'd have nothing to worry about. That was a stupid, stupid assumption. About halfway through the recovery of my second surgery, I noticed that my bras seemed to be fitting a bit differently. I brushed it off. But now, now that I'm completely done with three surgeries? I have exactly one bra that I can wear, and even it isn't fitting well at all. Measurement-wise, I should be in a J-cup.

From the waist down, I look like a Weeble. From the neck to the waist? I look more like a p*rn st*r.

Oh well. Such is life. They look ridiculous, but they don't really bother me all that much at this point in time. I'm certainly not about to undergo surgery to get rid of them. I've had enough surgery to last me a lifetime, I think.

Right now, I mostly want my legs to work right, and if the price I have to pay for that is a laughably large chest, then so be it. I can do that.