My thoughts on living with lipedema and lymphedema…and other stuff


Feeling useless…and fragile

I had kind of a meltdown yesterday and, in the wake of that, today has been a total waste in terms of any kind of accomplishment. So I’m not in the best place in this moment.

There are also circumstances that are making it worse: I haven’t had a functioning furnace for several years now, but winters have been fairly mild and I have managed to muddle through a few really cold nights and survive the season. This year, however, is turning out differently, and it’s a combination of unusually cold weather (temps in the low 30s at night this week with a severe windchill factor on top of that) and my new vulnerability to uncomfortable conditions, given my new built-in conditions!

My plumber, Richard, who saved the day with the gas repairs and the re-pipe a month or so back, volunteered to come out to look at my thermostat to see if he could get the furnace working. He said he would come yesterday, and I had high hopes that by last night (the first one in the 30s) I might have heat. Instead, he showed up with another guy, who works for his cousin’s HVAC company, and after this guy looked at the furnace, took photos of the thermostat, and they went outside to confer, Richard tells me that no one will work on a floor furnace any more, that they are “obsolete,” and that it will cost me $7,000 to put in a wall furnace instead.

Since I just handed Richard about $11K for fixing the plumbing and gas, I’m not exactly rolling in dough, and won’t be for a while; so I tried to persuade him that the floor furnace was perfectly adequate for my needs (it heats the house beautifully when it works) and that I’d be happy if he’d just try to fix it. But it seems that the State of California has outlawed floor furnaces (for no apparent reason), so if yours continues to function then it’s grandfathered in, but if it breaks down, no one is allowed to repair it! I certainly wouldn’t tell anybody, but no one is going to risk their license, apparently, by struggling with my old floor register.

They wanted to start on the changeout today, but I told them I had to ponder where I was going to get the money and I would call them. Then I went on the SoCal Gas Company website, looked up the Energy Savings Assistance Program, and discovered that the dubious blessing of having low income means that they will replace my furnace for free! I guess it’s good that I didn’t teach any classes at UCLA last year, because that meant I squeaked under the wire for eligibility. (The qualifying period runs from June 2023 to May 2024.) So I registered and am now waiting on a call from a local HVAC place to come out for an inspection and then give me a new heater.

All this nonsense, however, is what triggered my meltdown (ironic when it’s so, so cold in here, to call it that); when I thought Richard would be fixing the furnace, I realized it was full of a couple of years’ worth of dust, lint, and cat hair, and that I would need to vacuum it out thoroughly before we could turn it on or all that shit was going to burn up and stink me out of my house. So I hauled my personal nemesis—my Dyson vacuum cleaner (worst purchasing decision I ever made)—over to the hallway, jerked out the screens, and stuck the hose down into the furnace on both sides to suck it all out of there.

I’m doing this, mind you, while precariously balanced with one hand on my cane, bent over at the waist so I can reach the bottom of the furnace cavity, with my knees and lower back screaming at me that they were going to give way at any moment and plummet me head-first into the hole in the floor. I got the first half of it done, pushed myself up by climbing the wall with my free hand, and started to sob convulsively.

At first, I didn’t understand why this tiny bit of extra exertion had triggered such a cascade of desperate feelings, but once I hiccuped my way to silence and thought about it, I got it. For the past year, my condition has gotten progressively worse, and I can do less and less; and the fact that there are certain things that I have to do anyway, like feed myself, wash the dishes, get myself to the bathroom, has built up an unbearable tension. I am now walking full-time with my cane, and it means I have to be tensed and laser-focused at every moment I am about to take a step. If I put the cane down on a bit of cat hair or some lint or a stray bit of cereal that has fallen unseen from the kitchen counter, that cane is going to skid out from underneath me, and I could fall. When you add to that the fact that I am sometimes also carrying something in the other hand—a cup of tea, a trash bag to go out, a piece of clothing, a book—and therefore don’t have access to that hand to catch me against a wall or on the piece of furniture next to me, it’s a constant terrifying dance with possible fates. And I am conscious of it every minute that I am on my feet and moving. This can’t help but build up into the kind of crazy nervousness that is bound to eventually explode in feelings of helplessness and yes, fear. Try envisioning that every move you make has the potential to put you in the hospital with a broken hip, or land you on the ground unable to get back up by yourself but being completely alone, and maybe you’ll get it.

The rest of this picture makes everything exponentially worse, because I am a person who needs to be useful or at least occupied somehow, and my options are narrowing. I can no longer sit at my desk for much more than an hour without it heavily impacting my knees and my circulation, so writing and painting have to be strictly regulated, but that’s not the way I work—if I get socked into a project, I sit there with laser focus until it’s done, if that’s four hours. Can’t do it any more, which means I start fewer and fewer projects out of frustration at the broken-up nature of my concentration (which isn’t the best now anyway). And forget about things like outings with the Los Angeles Urban Sketchers—I can barely get myself down and back up the three steps to my front door, let alone go walk around Descanso Gardens carrying a backpack with my sketching stuff in it.

After the gargantuan effort it took to get ready for, travel to and from, and attend both my cousin’s funeral and our family Christmas celebration, I realized that teaching at UCLA this coming spring is going to be a bigger challenge than I can achieve. Getting washed and dressed is a painfully long ordeal. The stop-and-go drive takes 45 minutes minimum, while for me a drive time longer than 20 minutes begins to be actively uncomfortable. I have to park my car and get myself across a parking lot, up a ramp, and down a long hallway to my classroom, and that’s if I get the classroom assignment I’ve always had, which may not be the case (changes have been made in the past year and I may be reassigned to Moore Hall). And the class itself runs for 3.5 hours, during which I have to lecture and oversee classroom activities while sitting, because I can’t stand for more than five minutes at a time, but I will have to be conscious of the need to get up every half hour or so to stretch my legs and keep my knees functioning.

So, this week I initiated a call to the human resources department and explored my options. I don’t work enough hours to qualify for FMLA, but I can apparently apply for and probably receive an unpaid personal medical leave. I will need to fill out a bunch of forms and get a note from a doctor, and then…and then, I will need to finally follow through and do what I’ve been putting off (hoping things would stabilize) for way too long, which is to get lymph-sparing liposuction on my knees and thighs and hope that in addition to relieving me of the fibrotic fat, it also gets my lymphatic system back in working order so that my legs recover from their overinflated ordeal of the past four years. But first, before all of that, I have to find a doctor who does the procedure correctly and also takes insurance (including Medicare), which is apparently a really tiny Venn diagram.

When I retired from my job and made the conscious decision to get in better shape by fixing my diet and getting back to a meaningful amount of exercise, my vision was of traveling to France or Italy to take art classes amidst the villas and monuments; of going for long walks at the beach, followed by lunch with a friend and a browse through a bookstore. In my worst nightmares it didn’t include pursuing a daily regimen of massage, vibration, and lymph pumping while sleeping on a reclining sofa; having to sit down on the seat of my walker every 40 steps or so to rest; or having to ask someone else to do my laundry because I can’t descend and climb the three steps to and from the garage three times in a row in one day to transfer the wash to the dryer and then into the house.

So yeah…I’m feeling fragile. And useless. And angry, and sad, and…

One response to “Feeling useless…and fragile”

  1. Life can be shitty. Hope things change for the better soon. Lucky you are smart enough to search for the right treatment from the right doctor. That gives you power.

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About Me

I started this blog to talk about a genetic, fibrotic fat-storing (some say autoimmune) condition called Lipoedema, which is something I began to experience in my 60s, although some see early onset at puberty, or post-pregnancy, or at menopause. The other “L” condition from which I suffer is Lymphedema, as a common secondary effect of the fibrosis that blocks lymphatic drainage. Despite the fact that one in 11 women suffer from lipoedema, most doctors have never heard of it, so on top of the pain and embarrassment of this extremely obvious malady, millions of us are out there being fat-shamed for a condition that isn’t contingent on diet or exercise for its growth. This blog was intended to share my reactions.

I have, however, reserved the right to discuss “other stuff” here and, increasingly, since January 20th, 2025, that is politics, because what else, after all, are we legitimately obsessed with in this age of fascism in these United States of America? So while the “theme” of this blog may be confusing, it is my blog, where I can talk about whatever I wish. You are not constrained to read the parts you don’t like. But I feel compelled to write about them.