Hi friends,
When I started this site, I promised to share the good, the bad and the ugly because the whole point of it is to help others know what others are going through. So here goes…
I turned 51 last month and finally am starting to enjoy some of the gifts of midlife. My hormones are changing, and my body is changing.
Also, my lipedema is coming back.
I’m noticing that my upper arms (where I’ve already had surgery) just blew up, it seems like, overnight. And areas where my legs had been worked on…a lot, to remove extremely fibrotic tissue suddenly are developing new nodules in the places that had been previously smooth. Yes I wear compression, yes I swim and lift weights and use MLD, and the massage gun, and all the things. But it is coming back. And I’ve developed two nodules in the front of my ankle, again, almost overnight. Ugh.
What Actions Will I Take?
Like many of you, I’m winging this treatment plan. My doctor and care team are supportive but not leading the way. Without information I’ve learned from the internet, I’d be up a creek without a paddle. So thank you dear sisters for sharing your stories, because you are helping us figure out this path.
- I’m switching immediately to over the heel compressions instead of my bioflect capris.
- I’ve made an appointment with my provider to ask her to prescribe custom fit compressions and I will pursue going up a notch in compression class. I will document this process including the insurance process because it might help someone else.
- I’ll begin taking weekly measurements of my legs and arms to track progression, and use the Lipedema Quality of Life Assessment to note and track any changes in other symptoms.
- For 100 days I will increase my swimming to daily instead of a weekly total of 210 minutes minimum. This is to see if I can make a difference with this extra movement and water compression. In the water I will also incorporate an arm workout with dumbbels, in addition to lifting arm weights in the house.
- I have to make a decision as to whether I want to pursue surgery again anytime soon. I spent about $84,000 out of pocket for three surgeries, despite having insurance coverage for the surgery. Things like the operating room, an ambulance ride, hyperbaric chambers, pre-and post op appointments and copays, and extreme after care expenses in a nursing hospital added up, in addition to the travel expenses. I need to weigh whether the results justify the investment in money and time. So I’ll keep you posted on what I learn and decide as well.
- We will reevaluate diet and look for areas where I’ve let too many processed carbs back in, and replace them with better options. STAT.
OK that’s it for now. I hope this helps just one more person.
Susan
