I've been receiving emails from readers (which I love and adore so please keep them coming!) and you have been asking what's going on with me today, if I have my diagnosis... and all that jazz.
No. I have no "official" diagnosis right now. As I previously posted, Dr. Premier knows and recognizes that I have this disease but cannot give me treatments until the proof is in writing. However, he did tell me on my last visit (about a month ago now) to order a Medical Alert bracelet and to start carrying a Med Alert card with me. So that's what I've done.
The front of my bracelet has my first name on it in large letters next to the classic red Medical Alert symbol.
The back has "PORPHYRIA" in all caps. If I knew what kind of porphyria I have that could go here, but I don't... and the types of porphyria are quite long, so maybe it wouldn't even fit! Below that, it has my D.O.B. followed by "See Wallet Card" - which is full of additional info. The last line has I.C.E. (in case of emergency) and my husbands phone number.
I have been wearing this since it came in the mail. I ordered it here and have been very pleased with the quality. I feel like I do have this disease... and I'm working on getting stronger, feeling healthier, and getting that fucking diagnosis so I can receive treatment.