The last time I talked to Dr. Premier was right after he had a phone conversation with Dr. Flippant. It was obvious that Dr. Flippant had voiced his opinions about my condition and it was swaying Dr. Premier's view. He slowly changed his mind from a rare type of Porphyria to "not tolerating hormonal changes". I can hear what the phone call must have been like:
Flippant: "Oh come on! Can't you see she's pulling you on a ride?"
Premier: "No, I really think she has Porphyria, or at least something that is causing her to be severely ill."
Flippant: "No way. She's a hormonal 20-something year old girl. She just needs to get a life. All of her tests have come back negative. Send her on her way."
Premier: "Well her tests have been negative, maybe you're right. Maybe she's not tolerating hormonal changes that happen in your 20's...."
Or at least that's how it goes in my head.
Anyway, so I was a bit concerned going in to see him so I took necessary precautions... such as having backup, printing out calendars and writing in all of my symptoms in each day I experienced them (thanks to my OCD personality, I keep a journal of this), a list of questions, and a new attitude.
The appointment started of shaky at best. He began by reading over my calendars I handed to him, asking appropriate questions, and then started to give me possible "syndromes" for each one. I was starting to get upset, and finally said "so I have like 10 different syndromes?" Thankfully my mom stepped in and was my voice for a few minutes as I haven't mastered the art of making your point gently.
In my mind I felt like I am the owner of this ship and my captain just jumped! Surrounding us, treading water, are all the other doctors I've seen yelling at him to abort. May Day! May Day! We're going down...
Mom interrupted my mental naval battle by saying that "we are not convinced that Jan doesn't have Porphyria." That it's too coincidental to have all the symptoms of one rare disease than to have 20 or so different syndromes. That we are thankful for all he has done and we realize that at this time there isn't more he can do... but that we were totally fine with that. In fact, I am doing well for the most part, a different person than I was one year ago, and that I'm going in the right direction.
Seeing El Capitano jump, we had to throw out a life preserver! Thankfully he grabbed hold and we hauled him back on board.
Dr. Premier agreed that it was more probable that I had Porphyria, just a type or mutation that hasn't been able to be identified at this point, due to lack of research being conducted on Porphyria. We ended the appointment (after an hour and a half) by saying that we will continue under the assumption that I have this rare disease, all medications will need to be cleared for safety, and that he would not "officially" give me the diagnosis due to lack of medical evidence and for insurance coverage purposes. I'm fine with all of this and thankful he's back on my ship. I'm not sure where we're sailing to, but we are going in the right direction.... finally.