I thought I would update what’s going on with the quest for “squeezie pants.”

I got a call from one of the nurses at the wound care center this week, telling me that although they had received my paperwork from the other doctors who treated me for lymphedema and had submitted that information to Medicare, I shouldn’t get my hopes up that this would expedite anything. According to the nurse, Medicare is “cracking down” on requests for the lymphatic press devices, and you must strictly follow their protocol in order to receive them. This involves a month of treatment, including one doctor’s visit per week plus evidence that you are doing everything else possible to alleviate the condition, including compression, elevation, and wrapping.

To that end, she encouraged me to get assistance from the home healthcare people, because their records go straight to Medicare, and evidence that I am exploring all my options will help with the ultimate goal. So, I had my first appointment yesterday, and signed up for twice-weekly visits from them.

The 90-minute visit was primarily taken up by the nurse interviewing me about all my health concerns and filling out paperwork I had to sign at the end, including what drugs I’m taking, what kinds of bandaging I’m using, any physical therapy, and so on. That was all fine; but then she said my doctor’s office had specified wrapping of the legs, and wanted me to heave my right leg up onto the coffee table to undergo photographing, bandaging, and wrapping.

In addition to being painful and well nigh impossible, this was something of a mixed message, because when I went to the doctor last week the nurse encouraged me to use one of the soft-edged, bandaid-like silicone foam bandages on my one remaining wound on the right leg, and to leave off the wrapping and the sleeve to let the leg “breathe.” She (and I) were pleased with the progress on that leg; all but one of the areas where it was “leaking” had scabbed over and looked well on their way to healing completely, despite the taut skin over the swollen area. But if wrapping is a requirement for the pants, bring it on, I thought.

The nurse was unfortunately not adept at doing the wrapping and, starting with my swollen foot, wrapped only as high as mid-calf. She began with a somewhat sticky, tight bandage, then covered that with a cloth one with velcro on the ends to keep it in place. I had to ask her to take off her two bracelets and her watch, because she kept scratching my leg as she wound the bandages, and any slight nick or scratch will open up a new opportunity for my leg to leak. I ended up taking the wrapping off about two hours after she left, because she wrapped it so sloppily around the foot and so tightly at the top end that it was cutting off my circulation in the leg and making my foot go even more numb than usual! I also discovered that the sticky bandage had dislodged one of the scabs and opened that wound back up to leak some more. So much for that.

The weird thing was, she didn’t even suggest wrapping the other leg, but instead applied a weird combination of bandages to its open area, then told me to put my “sleeve” back on it. Admittedly the sleeve does give some slight compression (as well as holding the bandages in place), but it confused me that she wasn’t told to wrap both legs!

After the wound care center nurse told me I would have to show evidence of “daily” care, I was afraid that I’d have to host the homecare nurses every single day; but she said no, I just had to show it was an ongoing effort. But how in the world does this work? I mean, I can tell Medicare that I’m wrapping when I’m not, or that I’m elevating or exercising or whatever it is they want to hear, and how are they going to know differently?

The truth is that I am pursuing remedies—I dance every morning with Body Groove for 10-13 minutes (they say that exercising the calf is tantamount to using a pump on the lower leg), I use my vibration platform at least twice daily, I employ my massage gun on the constricted areas where lipedema is provoking fibrosis every night while I watch TV, and I try to either move around or put my legs up for good portions of every day. But how would they know that without telling, and how would they be able to believe everything I say as a vehicle to getting my lympha-press?

It reminds me of when my cousin Cos was hoping to get relief for her sleep apnea. Her insurance company paid almost $4,000 for her to spend the night at the sleep lab to prove she had apnea, and then declined to pay for the $2,000 device she wanted to use to address it. If they had just given her the device they would have saved themselves money and my cousin time, and she would have had the device to use. So much of this comes from the heavy reliance on doctors as the experts and the complete lack of trust in us as individuals that we know our own bodies and what will and won’t work for us.

The truth is, I have received far more so-called medical help from “Dr. Google” and a bunch of Facebook groups than I have from most of the doctors in my life! I found stopchasingpain.com on Instagram and started using the “big six” massage technique demonstrated there, which helps drain the lymph; I discovered the efficacies of the vibration platform and the use of a massage gun on the Facebook page “Vibration for Fat Disorders,” and I also found ideas and the offer of definitive help in accessing lipedema surgery on Facebook from “Cover Lipedema,” a group of women who research the best options for liposuction surgeons who specifically address more than just the cosmetic. I have also gained insight into exactly how inflammatory foods can affect my lymph (instead of merely being told to quit eating virtually everything) from “Lipedema and Food Sensitivities.” Would that any of my doctors had provided me with this information, instead of having to find it for myself or be steered there by my indefatigable researcher, my cousin Kirsten.

My next appointment at the wound care center is next Wednesday, the 5th; we’ll see what new information emerges then. Meanwhile, I will keep doing what I’m doing and hoping for a positive outcome—the reward of squeezie pants.