Thursday, April 29, 2010

Mayo and Me

Mom and I scheduled our trip to Mayo, since Dr. Facade had never referred a patient there (can you believe that? In 20 years of practice!) and therefore was no help... again. At least she was consistent.

Before we left, we went to visit my old doctor, the one now in premier care. For this blog, we will refer to him as Dr. Premier. So Steve, Mom and I have an appointment with him the week we are scheduled to go to Mayo. We discuss what's been going on for the past year or so, I show him pictures of my rash and pee and OMG he's actually heard of Porphyria before. Amazing. More amazing is that it runs in his wife's family. She doesn't actually have it but her cousins and such do. He believes I have a legit case and definitely need to see doctors at the Mayo. Great, we are on track.

At the beginning of March we left Atlanta and drove the 5 hours or so to Jacksonville. I was just coming out of an attack, trying not to take muscle relaxers and hydrocodone every 3 hours, and not happy about having to stay in a dinky hotel for the next few days. I was hopeful though that we would leave with my diagnosis.


Dr. Asshole was my internist at Mayo. As soon as he came into the room the first thing he said was "you are too young and pretty to be sick". WHAT? He did a full exam, between talking about his four sons (who the F cares?) and again telling me that I was too young to be at Mayo. At one point I got so annoyed that I said back "I agree, but I am, and I'm here to find out what's wrong." Do you think I'm coming here for fun? So get this, after we finish with him, he draws up a schedule of doctors for me to consult with...

Sleep Disorder Doctor
and of course, Psychiatrist... because I'm crazy right.

Fast forward 3 days, no sleep, hours wasted, crying breakdowns, 3 pee jugs, 1 poop container, and a blood draw of 15 viles and Mom and I are on our way back to Atlanta with no answers, just royally pissed off.

Wait for results, cross our fingers that something shows, and get back as a patient with Dr. Premier.


  1. Hi Jan,
    I've been following your story on the porph group. My 18 year old daughter has a story very much like yours, her initial attack was while running at a track workout. I hope you get a positive diagnosis from your testing at Mayo. Jordan spent 18 days in the hospital in February and still hasn't been positively diagnosed. My best to you and keep up the blog!!

  2. Hi Jan,
    I can definitely relate to your experience with Dr. Asshole. I have seen my fair share of them and his comments about you being too young and pretty to be sick are ridiculous. I am glad you named him so well. They should get rid of these kinds of doctors in my opinion as they not only do not help but actually irritate the situation and cause stress, which definitely is not needed. My prayers and thoughts are with you. ♥

  3. Kim,
    Thank you so much for following. I'm sorry to hear Jordan has had such a difficult time. 18 days in the hospital is hard, but to still not have any answers... I can't imagine. How did you put her symptoms together with porphyria? I'm finding most patients have to put the puzzle together themselves because doctors don't think of it as a possibility. Unfortunately my experience at Mayo was not a positive one... but I'll be posting more about that soon. Please keep me updated on your experience and I hope you and your daughter find the road to recovery soon.

    Dr. Assholes are much more common than they should be. In my blog alone, I could have named 23 doctors this (yes, that's how many doctors I went to before Dr. Premier). I have all their names on a list waiting for my "official" diagnosis. Once I have that paperwork in hand I will begin writing each one a lovely letter. It might not mean anything to them, but it's all I can do. As for my letter to Mayo, Dr. Asshole will not be getting my letter, but his boss will, complete with copies of his dictations where he wants me to see a physiatrist and says I don't have porphyria. Thank you for your prayers and please keep reading!