Human suffering is infinite Blame, Anger, Fear, Hatred: infinite Compassion can also be infinite Mourn each loss. Pray for each terrified/injured/hungry/sick/kidnapped/orphaned child Compassion for one need not diminish compassion for another Love & peace are not betrayals 🕊️

First thing I noticed and don't know what part of a bat this would be!

⁦@TheEDSociety⁩ #GLC in less than two weeks away! Please share widely. I've just learned we have a few spaces remaining in our FULL DAY PROGRAM: SUNDAY 7/21 & Peds 7/20! Register @ EDS Society website (need to create profile) Learn about Physiolign @ physiolign.com

I haven't been posting much - putting all my energy into prism, education, foundation, and actually putting together a local care team. Saw my new #POTS cards in Nov. called 2 wks ago for f/u. No longer seeing POTS pts. Heard today lots of pts got the notice. Pls read my rxn.

Me: I sure am sore from my prolotherapy injections yesterday. Should I do some home PT before heading into the office? The internet:

Been workin since 9am w 2.5 hr break for dinner/fam. Missed all my own treatments this week. 10-16hrs/day x 2.5-3 wks now. Should be annoyed?..but just so happy that fatigue and "brain fog" aren't limiting my work hours!!! Please let this be the new normal (but w less work...)!!!

8/ Other areas of life, that's ok. Maintenance is ok. Breaks are ok. Meltdowns are ok. Waiting until you have time is (almost always, but not always) ok. But we have to give ourselves and each other grace. We have to learn to be ok with being ok.

2 calls to Immunologist, 1 call to CVS Specialty (who processed my prior auth and sent one dose before realizing my insurance doesn't cover them anymore. Then 33 min and 4 different agents at ⁦@Accredo⁩ who all said I need to talk to someone else and then disconnected!

Since 2015, I have lied w my daughter 1-3 hrs/night. A highlight of motherhood and of life. Defenses down, conversation meaningful, cuddles tight. She's now independent and responsible about bedtime routine, thanks to her and our hard work. But I'm heartbroken for this to end.

At my daughter's Lego robotics competition. In addition to the main winner, fastest, there are awards for most fun, etc. The girls team won "cutest", which was clearly made up on the fly and assigned before they even began. I just...

B/c ppl w non-pathologic hypermobility, exceptional athleticism and no pain are coming to your clinic??? Like me in this photo, this kid looks great. But it may end up being painful, affecting the GI tract, being associated with POTS, MCAS, etc. So we empower, but stay vigilant.

@mulaney your bits help me laugh through some tough shit. I watch multiple times a week. Missing your show tonight bc of the same illnesses you help me through. So, if you could embarrass the 6'4" guy in the Bears shirt in row I and post video, I will die happy (not today!).