By Christina Routon
After about three weeks of wrapping I was ready to be back in my regular clothes, so Jodi set up an appointment for me to be measured at a local medical supplies company. I met Carey one morning before heading to work. I knew I wanted regular pantyhose, not thigh highs or knee highs.
It was uncomfortable being measured by a man instead of a woman. I kept telling myself it was for the greater good and I'd be back in my regular clothes soon.
I wore my wraps to the appointment and removed them there. This way we could be sure my legs were as small as possible. I wore a pair of loose fitting pajama pants over the wraps. Carey measured the same way Jodi did - using a small tape measure in various increments up and down my leg. We discussed the sizing and type and the difference between flat knit and circular knit. At the time, I remembered I'd read something about lipedema patients needing flat knit but I couldn't remember why. The flat knit seemed very thick, bulky and hot, so I chose to go with circular knit.
A few days later Carey had the cost - $600 for a pair of custom made hose!
There was no way I'd be able to pay that, especially since I wasn't sure how much insurance would pay, if any. So my husband and I discussed various options - getting knee highs and wearing them with a pair of store-bought capri length body shaper, waiting until spring and seeing how much our income refund would be or see if there was an off-the-rack size that would fit me, even if it wasn't exact.
I spoke to Carey about those options and he was able to find an off-the-rack pair of hose that fit within my measurement range. My cost was just over $100, which I paid using my Flexible Benefit card.
After wearing the hose a few days, I realized WHY lipedema patients need flat knit. The circular knit hose will bunch up around the ankle, the knee, and any other place you have lumps and bumps. The flat knit is supposed to do just that - lay flat, and not bit into the skin. My hose tend to pool around the ankle, just under the ring of fat. I'm constantly adjusting them during the day. Every night I check my ankles to make sure they didn't actually cut into the skin - sometimes it feels that way - but to be safe I put triple antibiotic cream around my ankles every night.
Mentally, dealing with the wraps was difficult. I found it hard to go out in public. No one said anything to me at work, even though I know some had to be curious as to why I walked around in skirts and tennis shoes with bandages on my legs. It's difficult to be in that headspace where you think people are talking about you or saying something about you. As an overweight person and now knowing I have lipedema, I seem to be in this place a lot, which is why it's difficult for me to wear dresses and skirts. Not
physically difficult, but mentally, because what repeats inside my head is "They're looking at your legs," over and over like a broken record.
Physically, the wraps were a pain because they would fall and slip during the day. I couldn't take the stairs because it was difficult to walk up and down in the bandages. They would loosen and start to fall as I climbed. There were times they seemed very tight, especially around my calves, and I couldn't wait to take them off or loosen them even a little. Keeping them on difficult at times. I enjoyed my freedom from the wraps when I washed them and showered.
I've had my hose now for about two to three weeks and I'm still getting used to them. I have to put them on with rubber gloves. This helps get a good grip as well as making sure nothing tears the fabric. Pulling them over my ankles and calves is the hardest part - and it hurts the most. Once I get them over my knees it's a lot easier. The material is still pinching around my ankles. I tried wrapping some cotton and taping it around my ankles first to give some cushion, but I couldn't get the cotton to stay in place as I pulled the hose over my foot and ankle.
I had my final visit with Jodi yesterday and received my final measurements.
From October 7 - November 28:
Lost 1 inch from hips
Lost 1 inch from thighs
Lost 1/2 inch from calves
Lost 4 pounds of scale weight
Doesn't sound like a lot, but when you look at fluid loss, it's a lot.
According to Jodi, I lost two liters of fluid from each leg during October / November. That's the equivalent of two 2-liter soda bottles.
My slacks fit better and my skin feels better. The ring of fat around my ankle is smaller. I can see a difference in my thighs more than my calves, although my husband says he can see a difference.
Now that the therapy is done, would I do it again? Yes, I would. I do believe I gained some ground in stabilizing this disorder. I dealt with being uncomfortable, physically and mentally, because I believed it would help me in the long run.
I plan to buy a pair of flat knit hose as well so that I can alternate between the two pair. I don't know how I'll feel about them come summer, and I don't like the pinching, but if it means staying stable I'll continue wearing them, and I do believe they're helping.
Now that the wrapping is out of the way, my next short-term goal is to start saving for surgery, continue my wheat-free / sugar-free diet (I may go grain free next year), continue exercising three days a week and become stronger and healthier as I prepare for liposuction within the next two-three years. All that sounds well and good, but my ultimate goal for 2013 purely superficial - I want to buy a great pair of wide calf boots and start wearing dresses and skirts again.
