Tuesday, July 26, 2011

At the Endo's Office

I made my first visit to my new doctor yesterday. She's a reproductive endocrinologist. Probably 99% of the women who visit are there about... well, reproduction... I liked my doctor immediately because she recognized that, and rather than pretend like my last endo that she had seen "tons" of patients like me, she admitted she had only had a few. That's a good sign, because statistically speaking, there aren't too many of us out there.

They did a blood test and checked my hormone levels. Things looked a tad bit lower than optimal, so she's changing my Estradiol dosage and timing slightly. I'll take two smaller doses per day rather than one bigger one each evening so that my body can better process it. I'm a little bit nervous about having higher levels of estrogen in my system. My current job doesn't allow me to be irrational or overly emotional, and I guess I'm concerned that this is going to throw me off kilter awhile. I guess we'll see.

Because I arrived at the office so early, I got about 45 minutes to sit in the waiting room and people-watch. I lived in New York City for eight years, and on my daily commute via subway I enjoyed studying each person in the subway car and inventing little fictions about them. Now living in a smaller town without public transport, I have less opportunity to do that, so the waiting room gave me the opportunity.

I watched the heavy-set, nervous couple next to me and imagined the conversations they had about their difficulty conceiving. He did not look happy to be there, and I wondered if he was missing an important day at work, or perhaps insisted that their troubles conceiving were her fault and not his. At least half a dozen different women in their 30s came in alone at different times. Most seemed to be wearing floral skirts, as if the skirt was simpler to remove and put back on again before and after getting up in the stirrups. I'm guessing most were there for fertility treatments of some sort. Another, very sweet-looking couple appeared. The woman's face was pained and concerned. It was only her husband/boyfriend who was called to the back offices, maybe to provide a "sample" of some sort. Finally, a few young women came in and left quickly, their upper arms bandaged, looking relieved as if they'd accomplished something. Norplant recipients I guessed.

It struck me as significant that everyone had come to this same place for such very different reasons. I wished that it were like a marketplace, and people could trade what they didn't want for what they truly desired. It must have been tough for the hopeful couples or the women having trouble getting pregnant watch as others came in for the sole purpose of preventing a pregnancy.

I wondered briefly, as I sometimes do but less and less, about how my own life would have been different had I been a "typical" woman. Fertility could still have been an issue, like for many women. But perhaps I would have found myself making an entirely different set of decisions about my life had certain doors not been closed years ago.

Maybe I would have stayed near my small town and taken that full-ride scholarship that I'd been offered from the state university. Studied something more "reliable" like accounting. Maybe I would have had a boyfriend early on and married young. Had a few children at 25. And never moved anywhere else, or even left the country. Maybe I wouldn't have had half the experiences I've had, or met a quarter of the people... No riding the last waves of the dot-com era in New York. No stumbling out of the Limelight at 4:30 am. No treks through the Thai jungle or late night drinks with AP journalists under the stars in remote Ratanakiri. No list of friends all around the globe I want to visit. No time to study and read and write whatever and wherever it was I wanted.

That's not to say that a different sort of life would not have been fantastic... I once had a small crush on a guy who goes to my gym. Until I found out he was married. To his high school sweetheart. They have three gorgeous little boys. (If given the choice, I would always choose sons over daughters too.) When I learned he was clearly and unambiguously taken, I think I fell in love with his family instead, and I sometimes fantasize about what it would have been like to be him or his wife. To have been born and grow up here, live an "all-American" life, fall in love, marry, and do everything the "traditional" way. There is an odd sort of comfort to the idea, even for me. And a sweetness, which, though it might be illusory, is something I like to think about. I wonder if either of them would look at my life and wonder in the same way.

Sunday, July 24, 2011

Letter to My Doctor

I've decided it's time for me to write a letter to the doctor who initially diagnosed me with AIS at the age of seventeen. This is an important step for many of us whom were either lied to, told half-truths, or told, "You are one of only a few people in the world with this, and you'll never meet another person like you," or the also-popular, shame-inducing "Don't tell anyone."

Although I did harbor some anger with my gynecologist for not telling me the truth, and having no plan to ever tell me the truth, and no plan to get me any sort of psychological care post-surgery, I believe that I've worked through that and am in a more positive place. I think instead about what effect I would like to have on her and on the world, and have written a letter which doesn't bring up past grievances, but instead focuses on the future. Here it is below. I would be curious to hear what people think. Her name removed to protect her privacy:

Dear Dr. XYZ:

I am a former patient of yours whom you last saw 17-18 years ago. I visited your office as a teen with primary amenorrhea. Although I do not remember all the details, I recount that I was told that I had a congenital abnormality that had affected my internal, female sex organs, and that if not operated on, would likely become cancerous. Months later in Omaha, I had what I believed to be a hysterectomy performed.

A few years ago, in my early 30s, I discovered the true details surrounding my diagnosis of Androgen Insensitivity Syndrome. Although I was initially shocked and upset to discover the reality of the situation, I have been able to quickly come to terms with the diagnosis. Learning the truth has resolved a lot of unanswered questions about my body, and past events, and in some ways given me greater peace than I had when I thought I was an unfortunate woman with a potentially cancerous deformity. I have also connected with an amazing group of women with AIS and related DSD (disorders of sex development), and am active with a group called the AIS-DSD Support Group for Women and Families.

I write to you for two reasons. First, to request that you and your colleagues who still practice in gynecology, urology, pediatrics and other fields, become more aware of these conditions and more current best-case practices for treatment (which involve full disclosure to the patient over time and as age-appropriate). There is a wonderful network of medical, psychological, and peer support throughout North America surrounding DSD. Second, to offer myself as a resource should anyone in the area be diagnosed with AIS, Sywer Syndrome, Congenital Adrenal Hyperplasia, or other DSD, and want to speak with someone who has lived a similar experience. I have no formal medical training myself, and of course would not offer medical advice. However, I and many others have found that peer support is a crucial piece in living happily with a DSD.

If you or any of your colleagues have met, or meet patients in the future with AIS, Swyer Syndrome, or other DSD, I am glad to offer my contact information to you, your colleagues, or to these patients or their families directly. I am happy to share my experience or relate experiences of friends and acquaintances of mine living with this and similar conditions. To discuss further, you may write to me at the above address, or contact me by phone or email.

Thank you for your time.


Quest for more Medical Records

In a recent post I believe I mentioned wanting to hunt down my remaining medical records, should they still exist. I've had mixed luck. The records from my hernia procedure at age two have already been destroyed. It took place in upstate New York, and New York state law only requires that records for a minor be kept until after the patient reaches the age of 18.

Still working on the records from my gynecologist when I was a teen. Although I have the hospital records which explicitly show that she and the surgeon lied to me, I only just a week ago requested the records from the gynecologist. I am nervous that they will be hidden or destroyed, as I hear is sometimes the case when patients with DSD (disorders of sex development) request them. I grew up in Nebraska, and according to Nebraska state law, the records must have been kept at least ten years, but in practice are often kept longer. Let's hope it's the latter. The last I checked, they had not been faxed yet to my new doctor's office.

Georgetown University has a useful reference on medical records, laws by state, and your rights under HIPAA. Have a look at http://hpi.georgetown.edu/privacy/records.html

Wednesday, July 13, 2011

Fourth Reading

A good friend did a Tarot reading for me recently. This is the fourth she's done for me, and all have turned out remarkably accurate - for the most part. She predicted I would change jobs, just three weeks after I thought I had "settled" on one. And two weeks later I had an offer paying 50% more at a higher level. She also predicted the course of events related to a family struggle I had, and also relating to a guy I dated over a year ago. (Of course, I could already have seen that latter train wreck coming.)

The only place she's failed is in her foretelling that I would meet a younger and "emotionally volatile, but sincere" man and that we would become a couple. The closest I've gotten to emotionally volatile is a loony actor/model who was three years older, and whose "sincerity" if you can call it that, lasted all of two weeks. So I don't think I've met him yet.

Interestingly, he showed up again (the same card - Page of Cups) in the fourth reading, in the same position. I think I grimaced when she flipped the card, because I felt like he was taunting me. If I didn't get so agitated when she does these readings, I think I could safely call myself an atheist, but something about these cards and the way that the majority of her descriptions seem to come true in the order she predicts still freaks me out a bit. You could call it self-fulfilling prophecy or the tendency humans have to look for patterns, or create them when they're not there. But that would ruin some of the fun.

The biggest takeaway from this last reading was that I've already embarked on some major change. "You've already put it in motion," she said. "You've had your 'Aha!' moment already... It's not about money... It's not about meeting others' expectations... You've been preparing most of your life for this, and you didn't know it." My friend, a Tarot-reading atheist, predicted a focus on something very different, more opportunities for freedom, and a "non-traditional happiness".

I could interpret this as my cue to quit my job and fly back to Cambodia, or even New York, both of which I've been missing a bit recently. I think my tendency is to look for an escape path, or some definitive way to force myself to move on when life isn't perfect, so I am resisting the urge to do something drastic like pack up two suitcases and rent out my condo. (Though I love the idea that I could if I really wanted.)

All superstition and mysticism aside, this friend of mine knows me well, and I think that subconsciously or consciously, she's encouraging me to "get on with it" and enjoy life a little more. I've heard at different times from her that I work too much, that I'm not selfish enough, that I don't make enough demands of other people, or stand up for myself, and I think that she's right.

There is a point to this story - believe it or not. I've been thinking about this in the context of work, and my personal life, and the conference in Seattle last weekend. I am still feeling energized after those four days, and I've used that energy to do a few things get the minimum done at work, in the shortest amount of time, and spend the rest of my energy on my own projects, and my own health. For the latter, I was inspired by some of the lectures I attended at the conference. I called my old gynecologist's office today, and demanded they send me my records from 17 years ago. (I hope they still have them.) Though I think I know them already, I really want all the details they concealed from me so long ago. I also made an appointment in another city with a better endocrinologist than my current one, to talk about my overall health. I'm calling in sick that day and I'm not feeling guilty about it. And I'm going to keep seeing different endos until I find one that I really like - who will educate herself in these conditions if she doesn't know them already, who will really listen to me and work for me, not in some traditionally paternalistic way, where doctors call all the shots because they think they know best. They often don't.

Lastly, I'm not putting so much pressure on myself to make things perfect. I ate scrambled eggs and rice for dinner tonight, and it was delicious. I finished off a bottle of wine that's been sitting in my fridge for the last week. I'm leaving a half-done project lying on my living room floor. And it will likely sit there through the weekend as I go to a few shows in Denver and Boulder. It's summer after all.

Monday, July 11, 2011

And We're Back...

Seattle was brilliant.

Rarely do any of us have the opportunity to meet and reconnect with so many courageous and dynamic people in a single venue. This conference was one of those uncommon moments.

While in this year's story-telling session, and in a few informal group discussions, I found myself thinking about my daily life, and interactions with family, friends and co-workers - and about how superficial most of our conversations really are. In almost "third-grade book report" format, we recount the events of the past weekend or gossip about some trivial situation. But for four days, I had the pleasure of listening and talking about things that truly matter - that get at the roots of human experience, identity, joy and pain. I had more candid, honest and meaningful conversations than I have had for months.

It was both exhilarating and exhausting.