Friday, June 12, 2009

And the wean goes on!

I went to see my endo yesterday. I get to wean again, and again, and again. LOL! As long as I am tolerating it, I can go down fairly quickly. I'm going to end up cutting out my middle dose. I'll wean down to 25 mg. a day, and do more lab work and see where all of it is, and see if I need to keep going down.

He had me cut my Florinef in half, at least for now. I have slight swelling. My bp was back up, so we know it's time for a wean. The higher dose of hydro can be causing some of my swelling too. He told me to watch my bp to figure out if I need more hydro or not. If I get dizzy from sitting up, or standing, then I need to take more Florinef.

It was a good visit. I got to ask about some other Cushie friends. I asked if he would be willing to see them, and help them out. Of course, he said yes! He is just amazed at how doctors are not helping us! There are plenty of us out there who are willing to be diagnosed! We are willing to do the testing, even though it is such a pain! We just want to be better. Some doctors have made remarks to patients saying, "Why do you push for this? Why do you want this disease?" How stupid is that? Who wants a disease? It's not that we WANT Cushing's, we just want to get the proper diagnosis and get FIXED! That really shouldn't be that hard to understand! I guess it's just the fact that unless you live with it, and you know how it feels, you don't really understand! We are not a group of people who go looking for diseases to have. We are sick people who are looking for answers as to what we have! Big difference! I'm so thankful I have found a doctor on this side of the US to help me and others like me! They are too few and far between!

My husband commented last night that my skin has definitely changed. It's much softer now. My cousin keeps commenting that she can't believe how "pale" I am! LOL! She is so use to seeing my face always bright red, and now the redness is gone, or mostly gone. It started looking a bit red again in the past few days, since I need to wean again, but nothing like it did before! People have commented on my face slimming down too. I don't notice my heart any more. I use to always be aware of it beating, or skipping beats, fluttering, etc. Now, it's so calm, I don't even notice it. There are just little things like that, that nobody can see, that I notice, and things like that make me feel so much better!


littleoldladyinashoe said...

YAY Gracie! Can you believe I pulled your blog up the first time unlike others I had to try 10 times and some I gave up on completely! I was meant to pull yours up!
I went to the endo yesterday and she said the same thing about the florinef, but I don't ever take it or I swell like a blowfish. Even tried 1/4 of a pill and still staypuff marshmellow woman I was.

I found myself feeling good on the 120mg in the hospital but the wean to 30 they did in the last day I was there kicked my hiney. I went back to 60 and then 40 and still felt good and non swollen at 60 but when I went to 40 and under to the 20 I'm back on now...the swelling started again.

I will get very red faced in the evening when my hydro wears down too. Only in the evening and I feel like I'm on fire. Everyone comments that I got a sunburn, but I don't go in the sun. So, watch and see if thats when you get red faced. I never feel bad at all just beet red.

I'm proud of your wean but be careful, and if it catches up to you go back up and do it slower. There's no race going on 'round here :-)

angeladhenderson said...

CONGRATS!!! I know you are happy! I may have to make a trip up to see that dr. I sure know I haven't made progress here.

Angela Henderson
who still looks cushie but everyone thinks its cause I just eat too much:-(

Gracie said...

Angela, you should go see him! I don't know if he takes your insurance or not, but if he does, I think it would be worth your time! Audrey needs to go too!

Christy, thanks. I am not really trying to wean fast, but I had been on Keto before surgery, and lost 15 lbs. The post op hydro made me gain 15 lbs., just like that! It was way too high of a dose for me! Dr. F. has been sending patients home on 25 mg. after a BLA, lately! I won't go any faster than I feel I can handle it. I always listen to what my body tells me. After pit surgery, I weaned every 2 weeks like clock work, but only because my body told me to. I'll be careful! I promise! :)