@casscond, it is great to hear you have some outlets to "get away" from the stress of dealing with a chronic illness. I was born with a rage genetic bleeding disorder called Hemophilia (my blood doesn't clot on its own). As a result I dealt with a lot of physical trauma to my joints as a child and had end-stage arthritis by the time I was 8 in multiple lower body joints. Our diagnoses are not comparable, but dealing with complex medical conditions that others around you may not understand is. Finding an outlet to "unplug" from the daily grind of a medical issue can be hard but crucial.

It is good you have a phone consult. Before your call, perhaps it would helpful (if you haven't already) to make a list of questions you'd like to address - things like how to get a referral or appointment request and what is the best way to share a long list of medical records.

Hi @casscond,
@JustinMcClanahan is absolutely right! I hope your phone call goes well, or went well. It seems that when physicians are dealing with a new patient, they typically want the "bottom line" information...not every single lab, x-ray, progress note, nurses note etc. They like a neat and tidy summary. What happened. What caused it. How was it treated. How is the patient now. Volumes of records tend to get overlooked as they go for the discharge summary, history & physical, procedures, operative reports. Having those records will be helpful. Especially the Discharge Summary and History & Physical.
Thank goodness you love school and reading! Does anyone else in your family have this condition? Are you the first?