In my last post I mentioned finally seeing a good Endocrinologist. One who, at our first meeting, based on my history alone said "I'll be stunned if it isn't CAH."
Monday October 22nd came and found me once again sitting down with my new Endo after tests she ordered. I was a nervous wreck, the night before I was in the shower sobbing, and then on the phone with my sister terrified that the tests would come back negative. I mean really, who in their right mind wishes they were going to be officially diagnosed with a birth defect? But that's just what I was hoping. Negative results would mean that I didn't have CAH and we'd be back to "I have no idea what is wrong with you." Lynne did a wonderful job of helping me calm down, and reminded me that it wasn't just my Endo that thought it was CAH as Lynne and I had spent time researching it and comparing notes with my life.
The fear however was still there. All my life I was so used to hearing things from doctors like "Well given everything you've been living with, I'm stunned you're even alive. But we have no idea what's wrong with you." I was terrified Monday was going to bring another "Well clearly you have health issues, but we still have no idea what's wrong with you."
I really need not have worried, because my new Endo, well she was not the least bit stunned. I do in fact have Congenital Adrenal Hyperplasia (CA) and have had it since birth. Thus Congenital. So Monday, after a lifetime of suffering, I started on treatment for it. One of the many crushing symptoms of it was an inability to sleep in any way that was really healthy. It was this, and the weight problems I have that finally had me at the Endo's since my primary care had no clue. She's a wonderful doctor, but the most recent in a long line of Doctors that had marveled at the fact that I was alive at all. She suggested the new Endo. I owe that woman a big hug at the very least.
So, I started on new meds Monday. Wednesday night I went to bed, still not having noticed a difference in my sleep behavior hoping it would change soon. Nine hours later I awoke to the sun shining in my bedroom and no idea what had happened. Nine hours of solid sleep was a miracle for me. A major one! Had a spot of breakfast and my morning meds (which include the new ones for CAH) and then took a 45 minute nap! Not content, and worried this was a fluke, I went to bed Thursday night, hoping the new sleep would last. I woke up once for breakfast and pills and again took a short nap. Almost 12 hours of sleep waking up briefly only once. Friday night, went to sleep, rose for breakfast and pills and then back to sleep. 10 hours last night.
God willing it shall continue! And as I understand things, it should.
There are other signs that I will not bore you with that also indicate real progress here. So it's not longer a 'possibility' of progress here, it is actual progress. And I shall be eternally grateful for the change this diagnosis, and treatment has brought to my life. My whole life I've been waiting for this. The new treatment however will do nothing to change my salt issues, so I'm still going to be consuming staggering amounts of salt. I can live with that!
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