Cue Organ Music

My recovery is going pretty well. I’ve had to get serious about my diagnosis and make some changes in my life. Some days I’ve got all the energy in the world to tackle this mess. Those days, I’m all “I am woman, hear me concentrate on a high carb diet, get serious about my exercise program, drink gallons of water and avoid alcohol and prescription meds.” Sorry, Helen. Other days, I’m bored with it and am ready to try out a new disease. Today is one of those days.

A few weeks ago, my doctor set out to try to find a specialist in my particular disorder, no easy feat when you consider that fewer than 1 in 20,000 have Acute Intermittent Porphyria. But she found one. Yay, right?! And it’s only about four hours from here rather than 8. Another yay! They had to send all my records to this guy to see if I qualify to see him without more expensive testing.. It’s like sorority Rush Week. Fingers crossed that I’m considered AIP material, girls! My mom has the genetic marker, so I should be, like, a legend, right? No pushing pennies down the hall with my nose. Or peeing in yet another cup.

So then a whole lot of nothing happened. I assume that the various offices involved communicate via carrier pigeon because there was a lot of waiting. Until last week. My doctor’s nurse called me and said they wanted me to come back in for a follow up. I love my doctor, but her nurse is a bit off-putting. He takes himself too seriously. It’s rather like having a discussion with Dr. Drake Ramoray.

I asked him if he had heard from the specialist yet. There was a long pause. “Yes,” he said slowly, after a long pause. “That’s exactly what we need to talk to you about. We will see you on Tuesday.”

I would not have been at all surprised if he had told me the specialist was my half-brother and he is pregnant with my child. I rolled my eyes so hard I may have sprained them. But I’ll play along. Everybody needs their little dramas.

Will I be number one pledge this Rush Week? Will we find out if I need more pokes and prods to get the coveted appointment? Will the nurse discover his evil twin has stolen his identity and purchased a dozen toy poodles? Stay tuned!


45 thoughts on “Cue Organ Music

  1. Doctors appointments are not places for cliff edge drama to be played out – it sounds like he’s going to let the specialist do the talking. Maybe that’s a good thing.

  2. I think I’d prefer melodrama to my GP’s new nurse. The old one quit with short notice (I do not blame her. That place is nuts.) and he’s stuck with this very green and dippy young nurse. She’s maybe 25 if that. And she grates on my nerves SO BADLY. One time I told her something that had happened to me and she said “Nuh-uh!” Professionals shouldn’t say “Nuh-uh!” I think I’m switching doctors. Soon.

  3. You should add violins to your organ music! You must have royalty in your ancestry. Thank goodness for modern medicine. In “The Madness of King George” he was sent away to live in isolation. His physician enforced strict behavior modification and he was cured. I’m still trying to blame my ancestors for my fibromyalgia! Hang in there. I’m praying that the doctors and researchers will find cures for you!

  4. Dr. Drake Ramoray made me snort-laugh. I miss “Friends.”

    I had a drama-filled gyno office once upon a time. Not at all what you want when people are all up in your business.

  5. Good luck with it, Heather. Having gone to way too many specialists I know that the regular one always wants some fanfare. Go with a list of questions. Good luck. Things will work out. Really. Would I lie?

  6. Will I be number one pledge this Rush Week? Will we find out if I need more pokes and prods to get the coveted appointment? Will the nurse discover his evil twin has stolen his identity and purchased a dozen toy poodles? Stay tuned!

    Ahahaha! It’s great that you’re able to look at the whole situation with a sense of humor. I hope all goes smoothly and that Nurse I-Watch-Too-Many-Medical-Dramas isn’t too annoying.

  7. I have a lot of experience, dealing with a complicated, chronic health issues. Once you start to get a good team together, insist (INSIST) that they send copies of everything to each other. “Please send copies to Dr. Drake Ramoray please” (btw: I have not hit the link yet, but I am sure that was the Dr Joey played, on Friends! Do I wins something?). It’s dizzying at first, but don’t settle for anyone you aren’t comfortable with, if possible, and then make sure they coordinate. All of this advise comes from someone in similar shoes, as well as dum dum dum: Dr’s wife. 😉 As for your post title:

  8. You better get in! And if they ask you to undress and circle all of your cellulite, REFUSE. You’re better than that.

    I’m sorry, what?

    Not THAT kind of Rush Week you say? Uh huh. How embarrassing.

    P.S. Dr. Drake Ramoray. I love you.

  9. Darn it, I’m sure sorry to hear about this diagnosis. For some inappropriate reason, I am right now flashbacking to your hilarious post on the urine sample drug test, and I just know somehow that will happen to you again in the process of your health discovery.

  10. Did you know a bunch of very famous people like Van Gogh and King George II or III? of England had what you have? You are among the elite. I hope your doctor has/had some good news for you on the Tues. visit. ~Dor

  11. My primary is a nerologist, I love him but his office staff sucks. I always demand the speak to me on the phone before appointments.

    Medical cliff hangers. I hope you have good news.

  12. When will the vampire jokes start? And will your children be alarmed?
    In all seriousness, waiting for a diagnosis is the worst. Almost as bad as having to make an appointment on their timeline and wait for news rather than just being given it on the phone! I hope you get the news you want.

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