Myopia is the “fancy” word for nearsightedness, a condition in which close-up objects are clear, but things that are farther away appear blurry. Tonight I have been ruminating on the other, less flattering, metaphorical meaning of the word, which is “lack of imagination, foresight, or intellectual insight,” as exhibited by my current lot of doctors. Hell, possibly all the doctors who have ever treated me, at one point or another?

I’m honestly not being mean here, but I do think I’m being more realistic than any of them have yet to achieve in their western-based treatment of my physical being. Some of them (notably a couple at Northridge Hospital who recently took very good care of me) can be perceptive, but they ultimately fall prey to their training, which is designed, for reasons unknown and completely illogical, to direct their attention to bodily dysfunction one tiny area at a time. They are so forcefully trained to do this that they fail, over and over, to see the forest for the trees.

I am a woman who was already too fat by about 75 pounds when, in 2019, I started to present the bodily characteristics of Lipedema. These are the addition of fat “pockets” (more like purses, pouches, and messenger bags) to specific areas on the body: the legs, showing up in ankle “cuffs”; large rolls of fat around the knees and thighs; and pouches added to the belly and hips, causing a massive distortion of the size of the lower body in proportion to the upper (although Lipedema can also collect on the upper arms). It also causes pain, numbness, heaviness, and bruising. And the ultimate result is that those fat pockets then turn fibrotic, that is, the connecting tissues thicken and scar.

What happens after that is almost inevitable and is what happened to me about two years ago, which is the development of secondary Lymphedema. Basically, the fibrotic tissue from the Lipedema blocks off the lymph system from properly doing its job, and since the lymph system is gravity-based without an active pump such as the heart to do its work, fluids accumulate in the lower extremities and don’t move out. And, just like Lipedema, it’s hard to treat. Suggested therapies are elevation (helps more in early stages), exercise (helps a lot if you are still sufficiently mobile to do it), plenty of water (keeping hydrated pushes the current fluid out), and compression garments (this is becoming more controversial).

Between the two conditions, the one adding about 150 pounds of fat to my body in two short years (years in which I ate a healthy vegetarian diet and exercised regularly), and the other that adds an additional 50-75 pounds of fluid to each individual leg, you can perhaps imagine the extra load put on my heart, my lungs, and my joints (particularly knees), and my already small feet (for a person who is 5 feet, 9 inches tall).

At the hospital this week, for the first three days I was virtually immobile, first due to sedation, then to recovery from my operation, and all was (relatively) well. My blood pressure was in normal range, my heart rate was good, and I was receiving intravenous fluids. But on Wednesday, after more activity on Tuesday afternoon and evening—sitting up more, getting up to walk to the bathroom, strolling the halls for small trips with the physical therapists on staff—my heart rate went to a fluttery AFIB, and my blood pressure went from normal to sky high.

None of the doctors could figure it out! One of them actually said to me, What is going ON with you? like I would know when she would not. Well, it turns out I do, and shame on her and all the other doctors for not putting it together as easily as I did in one moment.

Getting up from the sofa tonight to start the routine for bed—turn out the lights, collect the things I’d need for bed from various rooms (including reading glasses, Kindle, kleenex, a refilled water bottle, wet-wipes and a bandage change for my lymphorrea, a pair of socks…), use the facilities, brush my teeth, rearrange my sleeping pillows—it struck me: How can ANY doctor be surprised that both my blood pressure and heart rate are up, once they take one look at these legs?! Anyone looking at the size of my right leg would know: The woman’s heart is straining everything she’s got to drag that hundred-pound weight around, and hey, there are TWO of them! (and she’s balanced on top of them…)

Stupid, really. considering their primary propensity when they initially see me (before I proselytize about my condition) is to put me on a diet. They all rant at you about losing weight, but then are SURPRISED by an elevated heart rate or BP? C’mon!

So…I gracefully gave in to taking the heart meds, because I didn’t want to mess around with that and there may be an end in sight if they can give me back a normal sinus rhythm; but I adamantly refused to consider starting blood pressure medication (and I have to say the doctor was on the same page here, which was a relief). But despite telling every doctor, nurse, nurse’s aide, physical therapist, wound care guy, and anyone else who would listen to the story of Lipedema + Lymphedema this past week, it seems there is a lot more educating to do. Would that the schools, hospitals, and clinics were doing it instead of those of us who have had to find our way through the forest of these conditions virtually on our own, and have received the majority of our information from Dr. Google and social media sites. When your education for a serious, life-altering disease is dependent on Facebook, you know you’re in trouble.