Don’t Call Me Moon Face.

by Alexa on October 18, 2005

After Wednesday’s appointment I walked to my car thinking that I was Capital-D-Done.
Done.
Done before I had even started, actually. I know you are probably all laughing at me, but it really seemed like too much, and I was tired of working so hard towards something and hearing again and again “We don’t know what is wrong with you, and we can’t do anything about it.”
I have had two miscarriages–and I know that many of you have been through years of treatment, scads of miscarriages, but truly, truly I say unto you: I am petrified of going through another one. And without medical intervention, I feel sure that I will.
And I am frustrated by the proposed timing—30 days until a new testosterone draw, then a monitored cycle to prove that I don’t ovulate, then reevaluation and planning and “What shall we do?” so basically 2 cycles—70 days at least–that lead us in a circle, right back to…here.
I got home from the appointment, and The Nearly was all expansive arm gestures and support. “We will do whatever it takes!” he said, flinging his arm sideways as if what it would take was somewhere West of us. “It will be worth it, it will all be worth it!”
I grumbled and snuffled unattractively. I whined about the money—just that afternoon I had received a $500 bill for tests, and I wasn’t even diagnosed yet. I started listing the costs of various procedures that might be in our future, and when I got to “An IVF cycle at our clinic could cost as much as fifteen thousand dollars.” The Nearly chuckled and said “You mean fifteen hundred.”
And oh, the LAUGHTER!

Anyway, the upshot of that afternoon was that I wasn’t going to do this anymore–repeat testosterone level be damned, I would go off the Yasmin but go straight back on the mini-pill, take a month to regroup, and then…well my plan was to think about that later.

Two days later, I was at my desk at work, idly counting how many paper clips I could fit into an Altoids Cinnamon Gum Tin, when the phone rang:

PHONE: Brrrring! Brrrrring!
ME: This is Alexa.
DR. DOCTOR: Hi Alexa, this is Dr. Doctor.
ME: Oh…Hello. (Thinking: Not a nurse or an assistant or a receptionist calling?)
DR. DOCTOR: I was just sitting here looking over your charts and thinking about your case.
ME: Silence.
ME: Really?
DR. DOCTOR: Yes, and I am still concerned about your insulin. And looking at some of your other symptoms—the fatigue, stretch marks, anovulation–it occurred to me that you may have Cushing’s Disease.
ME: You were just looking at my charts?
DR. DOCTOR: Yes, I have them right here. Anyway, it is very rare, and you lack some of the observable clinical symptoms, but it could be of recent onset. It’s a long shot, but I’d like to do some tests.
ME: Of course…(Flipping through calendar several weeks ahead) When did you have in mind?
DR. DOCTOR: As soon as possible—a nurse will call you within an hour to schedule the tests, and luckily the results come back really fast for these, so you and I will talk next week.
ME: Really? I mean, yes, splendid, next week.

Before I go any further with this story, I would like to make one thing perfectly clear.
I DO NOT HAVE A MOON FACE.
Nor do I have anything at all resembling a “buffalo hump” (she said distastefully). So when you Google Cushing’s Disease (like I know you will, you googlewhores) don’t go getting any ideas. I have a lovely face—a little too long, perhaps, but fine. And as for buffalo humps—well, if anyone knows buffalo, and their humps, it is I, having been on many a childhood vacation to the badlands of North Dakota. I could not possibly resemble a buffalo less, I assure you.

So, to return to the story—Saturday I picked up two little vials of injectible something for Monday’s test, two little vials, I assume, of liquid platinum, as it cost me $77 (after insurance!) to procure them.
Monday, fasting, I reported for my test. A phlebotomist drew two vials—one for Cortisol levels and one for 17-OHP. Next they injected me with the priceless nectar from the aforementioned vials (Cortosyn, or something), and left me alone to read P.G. Wodehouse for an hour. Then they returned and drew two more vials of my life’sblood—again, one Cortisol, one 17-OHP.

In the middle of all of this, they had the nerve to give me a pregnancy test.
You see, after the nurse gave me my injection, I turned a pretty mauve and mumbled something about asking her a question, and proceeded to tell her that the previous night (day 2 of my cycle, such as it is) I had two very large clots—much bigger than a quarter—about the size and shape of a club cracker. Also, they were tough and fibrous, rather than easily dissolvable. The nurse asked if I could have been pregnant, and I laughed gaily and said no, and if she didn’t believe me she could look at my ultrasound report from six days prior. She couldn’t find said report, and insisted I pee in a cup, which I did, and which was negative, and eventually I heard Dr. Doctor outside saying “Pregnant?—there is no earthly way she is pregnant, I just gave her an ultrasound a week ago and she was clearly pre-ovulatory.” So I was told to watch my bleeding and that was that.

My blood tests will be back tomorrowish, and I shall return to the clinic to collect the equipment for my next test, which involves me collecting ALL OF MY URINE for 24 hours.
They would like me to do this on Thursday.
I told them I would wear a peasant skirt before I would bring a giant pee vat to work, and we reached an impasse.
So we shall see.

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{ 8 comments… read them below or add one }

Lindsay Wiley October 18, 2005 at 7:37 pm

Holy cow. That’s a big deal. I hope you get some answers soon and that the news is good. It’s so tough to know what to hope for. A potentially concerning diagnosis, or continued confusion.

And my goodness, what planet is Dr. Doctor from anyway?

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T October 18, 2005 at 8:01 pm

I don’t think it’s preposterous at all that you don’t want to go through all this shit – it sucks. I was going to spend $5k just for a test to hopefully prevent miscarriage.

That said – have you also had the repeat pregnancy loss panel? I’m sure you have – just a thought. Good luck!

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Molly October 18, 2005 at 10:29 pm

Yep, I googled it. Seems like most of the links were about dogs.

In any case, I’m thrilled to hear about a medical provider who actually THINKS about you after you’ve left their office! Shocked, as well.

$1500. Ha ha ha, great joke, Nearly.

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Cass October 19, 2005 at 12:31 am

Will they let you do the pee collection thing over the weekend? I mean, they can’t honestly think you’re going to do it at work, right?

But oh I’m loving Dr. Doctor. Doing the things a doctor should. I think her name is quite appropriate.

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Thalia October 19, 2005 at 6:13 am

Boy you are getting even more shit to deal with! I don’t know whether to hope that it is cushing’s so that you get a diagnosis, or hope that is isn’t since it doesn’t seem like a good thing to have. What a messed-up world we live in.

I hope you are coping ok with this. Did you get the pee test rescheduled?

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MsPrufrock October 19, 2005 at 12:58 pm

Shit, I have a moon face. I will attribute it to bad genes rather than Cushing’s however.

I just googled it and now I’m confused. It seems to overlap a lot with PCOS. Medicine is so bloody confusing.

I love The Nearly’s innocence in regard to IF treatment costs. $1500. Haha!

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Ashley October 20, 2005 at 3:44 am

Hey,
I like your blog. I haven’t seen this one. I need to spend more time here. I have started to feel very alone again in the world of miscarriage… it is a bitch isn’t it? I have some similar stories… I am sorry for your losses- our losses and I know what you mean about not knowing if you could cope with a 3rd loss. I am almost sure that would send me over the edge. Keep writing!
Ashley

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Mary August 24, 2006 at 8:45 pm

I stumbled across your blog while looking up cortisol tests. I’ve been testing for Cushing’s for a year now and yes, I do take the vat of pee to work. How did this work out for you? Please contact me. I have learned a lot about Cushing’s in a year and the one thing I know is that doctors, even good ones, don’t know a lot about this diease. I’d love to help you if you are interested. (And no, I am not selling anything. I just have great research resources!)
Love your writing!

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