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.