Wednesday, October 27, 2010

May Day, May Day!

Yesterday I had a check-up appointment with Dr. Premier. Due to my last doctor's appointment with the M.D. (see previous post) I took my husband and my mom as backup.

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.

Sunday, October 17, 2010


This medical journey has led me to believe that M.D. most likely stands for Major Dick.

Dr. Premier said in our last phone conversation that "due to a lack of medical evidence, I could not be given a diagnosis of Porphyria. However, if we explored a reumetological disease (the only type we haven't 'explored') then he could theoretically give me a deferential diagnosis". So with nothing else left as an option, I reluctantly headed to another M.D.

And boy did this guy live up to the name! For blogging purposes he will be referred to as Dr. Flippant, although I am quite tempted to use his first name, last name, middle initial, address, phone number, fax number, a link to his website, a link to his personal bio...

The rules were this: I agreed to go to Dr. Flippant if Dr. Premier agreed to discuss with him personally my case and explain everything I've already been through... in the hopes that I didn't waste my time and my medial insurance's money.

So I make my appointment, complete a novel of new patient paperwork, show up 10 minutes early, discuss my entire health history with his medical assistant - showing her copies of labs, pictures of rashes, pictures of pee, the whole works...and then I meet him. This is how my appointment went:

MD: Hi I'm Dr. Flippant. Why don't you take a seat. (pointing to a chair so he can stand over me, making him feel superior)

ME: (getting off of exam table wearing paper gown) Um, OK.

MD: So I've gone over your records. Why are you even here?

ME: (totally taken aback, thinking he wants a brief history) Well, it all started a couple years ago...

MD: No, I just said I've read your history.

ME: OK, Well Dr. Premier wanted to check for a rare type of Lupus.

MD: Yea, yea, yea. (literally he says this) You don't have Lupus, you've been tested for that already.

ME: (thanks for pointing out the obvious A-hole...Do you think I want to be here) Ok, well...

MD: What I think is going on here, Jan, is that you are on a quest. A quest to find something sinister that doesn't exist. And I think it's time somebody take you out of the medical system so you can start living your life again.

ME: I was very sick, and that's why I'm going to doctors.

MD: You look fine to me.

ME: I wasn't 'fine' just a couple of months ago. When Dr. Premier began thinking I have Porphyria, he took me off of birth control pills, and having the extra estrogen out made a huge difference, but that wasn't long ago. So yes, right now I'm fine.

MD: Well being on birth control pills doesn't affect anything. What are you and your husband doing for contraception?

ME: (oh, are you my OB/GYN now? And what the hell business is it of yours?) Condoms

MD: You know that condoms really limit the male's sexual experience. You should go back on the pill. There's no reason why you shouldn't.

This is where I decided to keep my mouth shut, nod my head, and get the F out of there. By the time I got to my car I was crying, by the time I got home I was fuming mad.