Sunday, October 26, 2014

Statements Which Matter to XXY people

1. XXY people want good healthcare; Thats all.
2. XXY is all genders and all sexualities; What matters is that you are happy.
3. Anyone can be XXY, it is a means of identifying a unique set of parameters for living well needed by the medical profession.
4. XXY includes males, females, and intersex people.
5. XXY is a natural event and not something to be surgically adjusted to fit some arbitrary sense of beauty or to fit into the religious dichotomy of male and female.
6. XXY people will experience male and female aspects of life and how much is related to each individual.  But all XXY people will experience feelings.
7. The bottom line is that we need good health care to live good lives.

Monday, October 6, 2014

Serenity is Priceless

Lets talk for a minute about another side of my life, one that seriously complicates everything endocrine and provides me that generous excuse of why in the world anyone would want to learn as much as possible of a subject so incredibly poorly documented that it takes years to be conversant and decades to be skilled; Endocrinology is a bitch to learn and even now a decade into this path I'm still a student, an educated student.  Todays topic is Congenital Adrenal Hyperplasia or CAH, with hints of intersex, and all those things I usually don't mix up with the XXy crowd. 

You know, I'd love to be part of a group.. (really.. sort of, err.. no so much) but the idea of being part of a group has appeal.  And I have something in kind with all people 47,XXY in that I have 47 chromosomes too... except that I'm female.  Ish.. female ish.. which means more intersex really.  Or maybe I'm a feminine XXY guy lacking male parts, or damn, I hate this topic.  People ask me what gender I am, and frankly (Frank.. really?), really, I don't like hard questions.  I go with what others pick since they are less likely to take offense to me choosing something they didn't expect, saves so much indignation.  So yes, I am 47,XXY, and I have CAH of an appropriately rare version as to make me about 1 in billion or so; Doesn't feel special on this side, more like isolation, or a rock in the storm surging sea... surrounded by emptiness.


emptiness. ouch.

..   anyway...

So I have CAH, salt wasting version, or more specifically I don't make Aldosterone (mineralocorticoid) naturally.  The body (my... ) experiences a feedback loop for enough salt, which will always come up short since the mechanism to retain salt is broken, so the negative feedback on the circuit causes the kidneys to release high amounts of renin which in turn stimulates Aldosterone (except that very little of that happens, so little that its not detectable).  Instead of the body/kidney's retaining some salt and passing the water through both are retained causing water retention or bloating or edema depending on who you talk to.  Chronic edema is.. bad, lets leave it at that right up there with heart attack.  I have two choices, take and continue taking salt at a minimum of every two hours for the rest of my life and try to balance the blood pressure issues, along with progesterone which in turn will allow the endocrine system to make a minimum of necessary mineralocorticoids directly through their primary path; Or, I can try taking some of those designer drugs and still try to balance salt.

Two issues with the assumption of endocrinology have occurred to me, both relating to completely dysfunctional endocrine system like me.. specifically that:
1. The ideal that there is only one path between the endpoint cortisol and mineralocorticoid hormones is lunacy.  The body has at least two and probably three ways to make those absolutely necessary hormones, although the cost of creating the alternative pathway's make the alternatives far less than the preferred method; and that,
2. The alternative path's are so expensive that even having them is not enough to do more than to produce small amounts while exhausting the patient; and that..

I wrote about cancer last time.. wasn't kidding about the body being able to make hormones via a less than preferred pathway as needed in at least small quantities.  Usually the medical experimentation occurs on someone like me, but I see the medical community experimenting wholesale on most of the active population of the planet.  Odd, no?  The human body is absolutely amazing, in what it can survive, although we measure time in years and the body in minutes; Here we find the disparity of desire versus longevity.  Until medical science acknowledges what we already know, the study of Endocrinology is still an art, less practical.

When have I ever done something the easy way?  No thats not fair, I do it the healthy way, and because I don't like the effects or long term loading of the drugs choose to use bioidentical progesterone and estradiol only.  Which leaves me with balancing salt intake versus high blood pressure and progesterone.  I know from experience that it works, that it is possible, and that one can succeed in life despite these kinds of challenges.  And I know what its like to miss a dose of any of those and the hormone cascade crash that goes with it.

To set the record straight:
It is MY rock..
in MY empty Sea..
a single patch of Serenity
in the Storm of life.