2021 was an epic year as a lipedema patient

Happy New Year friends!

2021 was an epic year for a lipedema patient. I saw so many of us get insurance approval and start surgical treatment, improving and testing ways of eating that work for us, and so many cute clothes came out for us – finally!

One of the things I’ve realized is that, as I put this brief year review together, I want to be more intentional about sharing my stories on this page more regularly. I plan to spend some time each Sunday morning catching up and sharing information to have set answers to questions that folks send me privately pretty regularly.

For now, I want to recap the highlights of the year, both good and bad:

I had three lipedema reduction surgeries this year, consisting of removing nodules from the calves (very extensive surgery), knees, back of legs, butt shelf, front and inside of legs, and upper arms. There are places, especially in the knee area, the continue to grow at a pretty rapid pace and I suspect I may need continued treatement. However, these three surgeries also represented five weeks of travel to Los Angeles/Beverly Hills, and months of recovery.

As the nodules came off the knee area especially, the hypermobility was freed up to do its thing. I do have the Erlers-Danlos syndrome, which causes me to be extra flexible (I can put both palms flat on the floor from a standing position, for example). This syndrome is definitely something I need to learn more about. The nodules on my knees have been pushing on the connective tissue there and when they came off, my knees now dislocate on the regular. I see it most when I’m laying on my side, or swimming. Sometimes they ‘lock’ in an odd position, and sometimes they just pop back and forth, well, sideways. So this is a newer development that I need to figure out for the sake of saving mobility long-term.

In my job, I continued to telework full time for the second year now, due to the pandemic. I spent tons of time at home, always plotting the next getaway. I didn’t realize I was travelling so heavily until I looked at it from the whole year’s perspective. Here’s a rundown of travel (there’s a point to this in a minute):

Three trips to LA
Two work trips to DC
A trip to Hawaii with my mom, sister, and daughter
A week cruise to Mexico with my husband and daughter
A week in the panhandle of Florida with my husband, kids and their friends – this included nights in New Orleans and Memphis en route
An anniversary trip to Kansas City with my husband
A trip to San Antonio and Austin for a friend’s funeral
A trip to Kansas City (and a haunted hotel) with my husband to pick up band props

This seems like a lot. But I travel very extensively for work in non-covid times (I have a log of every trip since 1998.) In a normal year, I might take 20 or 30 trips around the country for work, plus personal trips. Anyway – the point – I get tons of questions about how to keep swelling at bay for travel. I plan to do a really good blog and share all my good non-swelling tips this next Sunday. Then when the PMs come in, I can just send a link with the same info each time. Good idea!

One of the biggest things that happened to me is that I learned to manage my swelling. I got a pool and started swimming, hard, several times a week. I got hooked up with an amazing occuptional therapist nearby, who helped me get swelling down, gave me a good pool program, and taught me what I need to do so I don’t have to keep seeing her several times a week. Her job was to teach me, not keep me as a perpetual patient, and it worked. Also, I learned to incorporate compression into my life, more regularly than not, and know when I must use it. I have started figuring out new kinds of outfits for the occasion, that incorporate the compression when I need it. I’m going to start a new series in 2022 called Last Sunday Lipedema Friendly Outfits, so be watching for that, as I figure it all out myself!

I found some amazing shoes and SANDALS(!) that fit my 13WW and occasionally, swollen, feet – finally! Life changing. Also, I started wearing shorts again, and continued wearing my favorite swimsuit ever, in all those places involving water that I mentioned above. And I had a blast. And I got a tan!

And I learned something pretty important. I’ll always be a lipedema patient and my legs are always going to just be different. I’ve learned that I’m seriously not alone and that living my best life helps normalize seeing people with legs like mine. So I’m going to keep doing that, and speading awareness, and going and doing and looking how I want to look (doing the best I can with what I have), and loving the life I have. So acceptance for me has been a huge part of all this, and I hope that if you’re not there, you move towards acceptance, and that when I forget I accepted it, I go back to it. Hopefully that all makes sense – it’s kind of deep for early in the morning. Here’s where I am today. I’m in my yoga clothes and looking forward to a good stretch, and to sit down and start working on those blogs to help you, and me!

So it’s been a good year. I have a ton to tell you, and catch up on over the next few weeks. Thanks for staying tuned each Sunday this year, and keep on watching my YouTube and Instagram feeds for supplemental information. I can’t wait to continue tackling life with lipedema with you.