SingsongRaptorThe difference in my POTS stability from just two days of having my supplements back is kind of insane. Very grateful to the person that bought them for me. Hopefully this flare I'm in will settle down. I have a Drs appt this week ๐ฉ
ZOh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I really NEED to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! ๐
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
starryeyesOh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I *really NEED* to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! ๐
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
whinymarfOh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I *really NEED* to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! ๐
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS
Ultrasound came back 99% normal. The nodule they've been watching since my surgery has gotten bigger so my surgeon wants me to get it biopsied. The nodules on the right half (that got removed) ended up benign so I'm trying not to overthink it. #disability #NEISvoid #ChronicIllness
serenebabeโDoing less than you want, more than you shouldโ ooooffff!! (this whole list is so true!) #NEISvoid
RE: https://bsky.app/profile/did:plc:dbzmdmsaz6lkhb4tv3culzme/post/3ml4fm6hbgr2s
RE: https://bsky.app/profile/did:plc:dbzmdmsaz6lkhb4tv3culzme/post/3ml4fm6hbgr2s
Catch me getting pretty ladies with my new rizz like a bird captured for research lol #NEISvoid #disability #ChronicIllness
Fallon the chronic gremlinI'm getting close to the point of giving up on most healthcare. There's no treatment for 90% of the problems I have, so why bother subjecting myself to all the gaslighting? #NEISvoid
Kit AuthorWondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
CetrariaThe joys of an energy limiting illness and...life. I'm trying a new CPAP machine, and I think the mask is not a great fit. (What it reads as "a good seal" reads to me as "a huge blast of freezing cold air across my cheek")
This morning, I scheduled an appointment for an in-person fitting this afternoon. I knew that was gonna suck because it meant washing my hair, as it was very greasy after getting a scalp massage yesterday. And it comes a bit too close before a visit from my mom and her partner tomorrow, increasing the odds of it causing a crash.
Of course, the CPAP people call me to tell me there's a power outage at their office and they're rescheduling appointments into next week, right while my head is under the tap. Oh well. I guess now I don't have to wash my hair tomorrow, so I'm saving a little energy before my visitors arrive. #NEISvoid