Measure Twice, Be Patient

I visited the lymphedema therapist recently and have another appointment this afternoon. The therapist had to call in a professional from Medi to take accurate measurements of my legs to ensure a proper custom fit. T. knows how to accurately measure for their product. I don't think I've ever had compression hose I could wear after my therapist measured. Sad but true. The first pair she measured me for were made (to measure) for a troll with an enormous butt, and I'm much taller than a troll. I don't know if not being accurate at measuring is universal with therapists or accurately measuring limbs afflicted with lymphedema is simply difficult. I imagine a bit of both though depending on the victim patient, it could be very difficult to measure accurately. Having both legs measured is exhausting for both patient and measurer. They place numerous markers and have to measure circumference and length at the various markers, and then remeasure and make notes and you have to stand up and sit dow and turn your legs in funny positions. Invariably the measuring is done incorrectly the first time. Then once consensus is reached on the overall guestimate of measurement, they fill out several forms and send the measurements and forms off to those angry German seamstresses (sewers) I've written about previously. The seamstresses don't do their jobs very well or maybe they perform their jobs very well - it's difficult to figure out what's in their job description by the end product you receive. You might get a pair of compression hose made for a troll with an enormous butt or a variation on that theme because the sewers didn't follow the measurements or the measurements were taken incorrectly. Patients might spend their waking hours hiking up compression hose so they the hose aren't dragging on the ground or pulling the compression hose out of our pinched, camel-toed crotches, turning one camel toe into a herd of camels. Occasionally the inguinal circulation is cut-off completely while standing. We crash to the floor as if we don't have a leg to stand on.

There are humiliating aspects to measuring. You're pant-less, underweared, standing most of the time with chubby legs. Sharpies are used to make designated markers so you get lines drawn on your legs thus making your nightly workout with the June Taylor Dancers suck. One technique that my therapist employs is the use of plastic foot-long ruler which I must hold sticking out of the crotch area like a mini-diving board and I know the ruler serves a purpose of a marker but still a red plastic ruler doesn't exactly offer much reassurance that the final custom fit will be a good one. The diving board idea brings to mind Greg Louganis. I wonder how his health has been?

Just this year my insurance put a cap of $2,000 on durable medical garments which means that I can get one and a half pair of compression hose when four pair are needed per year but then I should remember there are people who have no legs. I can no longer get nighttime garments Reid sleeves or farrow wraps even if those companies continue to come out with better technology. Some of these companies are doing marvelous things with cherry pits to help get rid of fibrosis. My toes are very fibrotic though in the past, the toes were even more fibrotic-er. Toe caps have helped tremendously though I'm not sure that I can afford toe caps without insurance. Progression is slow in ridding my lower body of fibrosis though the fibrosis was just as slow in coming. I have to remember to be patient and be a patient.