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Unformatted text preview: e that I overproduce, which makes for some really high cortisol levels when
I’m under stress. What has me so perplexed is that I thought
overproduction of cortisol was Cushing’s syndrome. While at
twenty-two years of age, I didn’t show any signs of Cushing’s, I
was fairly fit, even with the screwy hormone levels.
Kailana does not take this lightly. She has learned a lot about congenital adrenal hyperplasia and pediatric as well as reproductive endocrinology. Still, getting regular and accurate information about her condition is a problem.
“I often wonder why 5 percent potassium chloride is added to my IV
solutions, apparently a normal IV solution causes my body to go into
ketonuric shock or something like that. I don’t even know if that is the
Overproduction of cortisol interferes with normal glucose metabolism. Normally we derive the majority of our energy needs from blood
glucose. If high levels of cortisol prevent that, then we switch to digesting fats. Digestion of fats produces a group of compounds including
acetoacetate, beta-hydroxybutyrate, and acetone. Collectively these are
known as ketone bodies, and the acidic character of some of these can
cause the blood pH to drop dramatically—the blood quickly becomes
too acidic to support life, and the patient goes into shock. As the process proceeds, large amounts of ketone bodies appear in the urine—
ketonuria—and the patient is said to be ketonuric.
What everyone doesn’t get is that doctors don’t tell me anything, and I find out afterward that they have a plan to use 72 Between XX and XY different meds if I go into seizures or if I go into the ketonuric
shock; you see, my medical records state things that [the doctors] won’t actually talk to me about. I know I have to worry
about things, and I know it has to do with my one adrenal
gland, I assume it’s to do with CAH, but I really don’t know if
it is, in fact, CAH. The military doctors were, [and still] are the
only doctors to acknowledge what I have, what I am. The rest,
well they’re not much help. And I really worry sometimes, that
as they see me as male, they aren’t particularly worried about
the CAH condition, I’m not on a treatment plan. So at thirty-six,
I am showing signs of things that are kind of common to both
CAH and Cushing’s, yet none of them will do anything to help
me explain which it actually is.
I know my right adrenal gland was removed as an infant,
and [I] suspect some penile reconstruction with other genital
cosmetic alterations. But I really don’t know the exact dates or
why [these things were done] other than being told my sex was
changed from female (what I looked like when born), to male
(how I was assigned on [my] birth certificate) a month later. I
would imagine that those surgeries were much later. I do have
some really odd illnesses that kept me extremely underweight
as a toddler.
I have MRI scans that show how I am formed, how the
phallus is shaped, and it is not normal for a male. . . . I have
spent a great deal of my life being teased about how I am developed. Lots of jokes; it has pretty much left me with a low acceptance of myself as a male. . . . I have had a life of questioning
my gender—gender identity disorder [GID]. As a young kid,
[from] ten years of age on, I have known I should have been
a girl. Constantly being questioned by my mother and family
pediatrician about being happy as a boy, and me telling them
over and over that I am one of the most miserable people on
this planet. [That] I should have been a girl made absolutely no
difference to them. They just ignored me.
I am almost thirty-seven, I am still single, I have never mar- Where Our Sexes Come From ried, and I do not date. I am a little over fourteen years celibate,
which is probably my biggest complaint. I am terribly ugly
looking. I am extremely [camera shy], I don’t look even close
to having a female appearance. Yes, my breasts are developing [she is now taking estrogen supplements], but a great deal
slower than I had expected. My body hair is a lot lighter as well.
Other than that, though, I have way too much muscle, lots of
body fat, I’m slightly obese. My neck is as thick as what you
would expect on a three-hundred-pound linebacker, my chest,
My family relationship is extremely strained. I don’t go to
family events—Thanksgiving, Christmas, birthday parties—nor
do I celebrate my own birthday. I feel as though I am the black
sheep of the family. . . . Losing family over the way you’re born
isn’t right, but the philosophy doctors keep preaching on how
we should be raised, treated, have our medical records withheld from us. The lack of information and acknowledgement of
what we are has made me a very bitter person, especially when
dealing with doctors.
In a way, being intersexed, true hermaphrodite, has given
me a reason to transition with confidence . . . that this is
what I should have been [a woman] all along. I guess having
a genetic disorder that says you’re...
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- Spring '14