A Personal Account of Massage and CLL

Please note: this is an opinion piece, not an endorsement for any particular type of activity (see editor’s note, below). After two years of lethargy fueled by Covid and ancillary lockdowns I decided I would quest for freedom, but safely. The last two years now see surreal. Not going out? Unheard of! Not visiting family and friend – distressing. Cutting ourselves off from life. Yet together my…

It's soy and apparently bad for my PCOS.

So now I'll gain weight but for a different reason? Good god.

On the plus size I was just able to use my lymph board after not feeling up to it. (Ironically it usually makes me feel better after the first few days, but I've got to work up to it so it doesn't make my pelvic stuff sore) I did start gaining weight back around the time I stopped shaking. Stopped because I only felt up to it at night and Millie (who was about to pass at the time, and now has, Rest In Peace sweetie pie) needed to sleep so she would feel as good as she can.

Just read that EDS can cause your cells to basically be too squishy to be able to push the lymph out like normal people's. Makes sense. Especially because the mold and Lyme biotoxins make my lymphatic system work like five times harder than most people's.

Have to be careful with my pelvic floor and everything it's holding up, especially because I am doing PT, and I'm not supposed to do a big aspect of it (dilating) when I'm sorr, because it can cause my vaginismus/pelvic floor dysnerssia to actually get worse.

It's absolutely ridiculous how hard you have to work to keep one thing's treatment from flaring the other 472992. Ugh.

Anyway. Have to get to bed ASAP because I have a therapy session at noon because I missed it on Tuesday (worth it to see my gf Halsey). And because I was so worn out from Halsey I slept til 7PM today.

Wish me luck. Shout out to the best therapist ever for saying she could do a phone call if I couldn't get there. She knows my little nocturnal ass. (Actually it's pretty big at the moment due to the crazy swelling. Should be gone ok a couple weeks of shaking though, usually is. Phew)

Almost 5 months out from excess skin removal surgery. Only 1 minor complication- see photo- post surgical lymphodema in one lower leg. Hoping it goes away on its own in time, but it is a risk of thigh lifts, so it may never go back to looking normal.