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"Each of us must come to care about everyone else's children. We must recognize that the well being of our own children is intimately linked to the well being of all other people's children. After all, when one of our children needs life-saving surgery, someone else's child will perform it. When one of our children is harmed by violence, someone else's child will commit it. The good life for our own children can be secured only if it is also secured for all other people's children. But to work for the well being of all children is not just a practical matter-- it is also right!" - Lilian G. Katz, Phd.

Monday, February 25, 2008

Redefining myself Part 3

Part 1, Part 2

So now I have a diagnosis, and have found out what it is. But what does it mean for me personally? This has been a large mental adjustment for me. There are several factors involved with this adjustment, so please bear with me as I try to put complex emotions down in writing.

1) The first issue has to do with the fact that I am even diagnosed with this disorder. Before, when I thought I just had PCOS, that is pretty much how I considered it. It was a nuisance, and I didn't like the symptoms, but it was mainly just lifestyle issues. I put it very easily out of my mind when I wanted to. The other major diagnosis I have had in my life, besides the depression, which is apparently related to the CAH, was epilepsy. That was a significant moment in my life, but I was young, and adapted easily. Outgrowing it in my 20's helped me sort of discount the impact in my life. This, however, is a genetic disease. My sons could be carriers. It won't be cured, it won't go away. It will always be there.

I am still wrapping my mind around this concept. I am sure it will get easier when I am more than 2 weeks into the discovery and I know more. I am continuing to educate myself, and that helps, but it also brings more issues to front. It looks like, from self-education (the endocrinologist did not identify the type, only the effects) that I have Congenital adrenal hyperplasia due to 3 beta-hydroxysteroid dehydrogenase deficiency. I could still be wrong (I had mis-identified the type in part one, then edited out when I gained a better understanding). Being diagnosed as an adult definitely shows that I have a milder version, often identified as Non-classical CAH, or NCAH. I have also seen it identified as Late Onset, or LOCAH. I joined CARES, which is the US Education and Support organization.

2) So now I am dealing with the fact that I am sick, but then there is a whole different idea to deal with. My androgen production was increasing. What makes me female? Was I turning into a man? I know that while I embraced my feminine side, there are several personality traits about me that people would identify as male. I am a progressive and believe in acceptance, but it is amazing how deep bias runs when it is challenged by gender questions such as this. I was lucky- I could have been born with male genitalia if I had a more severe case of CAH. Mary called it in my comments on Part 2. While I am not necessarily intersex, I come close. I always knew I had more masculine features, broad shoulders, small breasts, and the beard that I am always fighting against. This diagnosis just caused my world to drop out. I will be fine soon, and these doubts will fade into the past, but at the moment they are causing a bit of chaos in my head. This is one of the main reasons I entitled this series "Redefining Myself".

3) I am now facing a lifetime of medication. Funny thing about the steroids. I was probably fine not taking them, although the issues we are trying to treat would have gotten worse. Now that I am taking them, though, I can not stop. I can not miss a pill. I need a medic alert bracelet to let Emergency Medical Personnel know both about the NCAH and the dexamethasone. I am not at the same risk of adrenal crisis as someone with Classical CAH, but I will get sick if I don't have my meds.
Dexamethasone is a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.
So, now I am taking a medication that causes a lot of side effects long term. Pretty much since I have started it, I have felt sick. I have had the flu, had stomach upset, insomnia, strange muscle pain, and other issues. I am hoping these issues reduce as I get used to it. If you check out the Wiki on Dexamethasone, the long-term effects can be nasty too.

So now, not only do I have this disorder, but I have to be aware I have it and structure my life around it. I am sure in a few years I will wonder why I was so upset about all of this, but at the moment I am a bit sensitive. I feel sick, I feel weak, and I feel broken.

In time, I will not feel this way. In time I will appreciate the miracles that are my children (it is exceptionally rare to get pregnant without assistance with these issues). But right now, I am facing the challenge of redefining myself.