how do you guys deal with the amount of drs/neurology appointments

so i have pt, palative care, regular dr appointments, speech therapy for a separate issue, neurology, botox, genetic appointments, and now for the next 3-4 months im gonna have multiple appointments to get DBS, therapy, and psych appointments and im starting to get burnt out like heavily burnt out and i just want it to stop ykwim and i understand that im a really rare case bc i have a separate disease called pkan disease and alot of my drs/neurologists have never seen someone like me my movement disorder dr has even said im the 2nd person he’s seen with my disease but OMFG this is so tiring 😭😭