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.