I forgot what I really started this blog for. As a journal as much as it was to keep others informed.
I didn't get a chance yesterday to really say what else has changed. And I also wanted to update, that I did hear from my ob/gyn. Unfortunately he's just clueless. I really think he has no idea what to do with me. I know he wants to help, but this is out of his league. I hate that too. I hate that he won't be more aggressive. But that's not his style. I have an appt with him on the 30th, so we will talk more in depth then. If he can't help me more, then I hope he will recommend someone who can. He did say if I was feeling ok off the estrogen, then to stay off it. If I could stay off it for 3 weeks, then I could get a blood test done to see where my levels stand. If I can't make it that long, then I should get back on the meds. Problem is, it's not just the estrogen, it's the testosterone too (cuz it's a mixed cream). I don't know. I know this is a pretty good idea, so we can know for sure...but still. I worry about all this stuff, because I know the whole estrogen thing is cancer causing. And I hate that. I hate thinking about that.
On the GH side, like I said yesterday, I have been feeling better. I have just as much energy but without my knees swelling up, without my carpal tunnel hurting etc. I'm less constipated, I don't pee as much or even drink as much either and I have no joint pains like I did before. I have no idea if all that is connected, but as I said, I'm journaling what I do feel. So, today was the first day back to taking my GH. I'll take the next dose on Saturday, then next Tuesday. I've got it all spread out, then I'll work it closer together. I hope to eventually be able to manage on 4 doses a week. I think that's all my body needs. I think 5 was just pushing the limit. But we'll see.
I've also lost a few more pounds since coming off it too. I think that brought my cortisol down some. I almost wish I could test and see, but I know that would start a whole new worry. I don't want to go there. I get scared when I go there. Once I see a new endo and get this dang stim test done, then I'll know for sure. But that's another day's worry. :D
1 comment:
Hi,
Just wanted to drop a note to say hello and let you know I've been reading your blog for the past couple of months. I too am a survivor of Cushing's syndrome and have been blogging about my journey over the past year or so.
I recently started a group that you might be interested in. It's call the Cushing's Partner Program, a place where patients can partner up with survivors of Cushing's to gain an inside perspective on the recovery journey from Cushing's. To learn more or to join our group, please follow this link: http://www.meetup.com/The-Cushings-Partner-Program-Support-Group/.
Keep up the blogging and I hope to see you in our group!
Take care,
Kristin
www.mybattlewithcushings.com
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