and the final re-post from my blog about being diagnosed with Congenital Adrenal Hyperplasia:
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.