"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.