Emory update May 11, 2011

This is my Lila wig, FYI my face is swollen from the meds, no I'm not gaining weight.

Hello Everyone!,  

             Yes, it is 4:30 am and yes I just couldn't sleep anymore and no, I didn't want to take anymore medication. I'm just going to start my day early. The Emory appointment went well yesterday. I always consider that it goes pretty well if they don't admit my butt. Dr. Khoury took me down one less pill of steroids a day and off the cough medication, YEAAAAA! The only down side of coming off this amount of steroids is bone pain and the crashing some from not getting a daily jolt. That is why he is doing it slowly. The bone pain is manifesting itself in my knees, which he said is common in young adults coming off steroids and the pain was going to get worse before it gets better.  Basically, sometimes my knees just lock up in very bad pain and I can't get up or down.  That was good news because I was thinking that my knees were all messed up from the radiation and I was going to have to start taking some expensive supplement to build it back up. Dr. Khoury smiled and told me that now I was playing doctor. I told him there are a lot of doctors and nurses in my family and hopefully he would get to meet my grandfather soon. 

                My CMV levels were not back yet and we will find out about those early Friday morning. I usually get to Emory about 7 am on Fridays. I'm usually up anyway. On Friday we will find out if the new medication is controlling the virus. If it is it, I will stay on it for a while. If not I will change to an IV drip twice a day, which I should be able to do at home. The rests of the ifs are too ugly to mention at this point so let’s just think positive. I did get permission to go to a church service if I wore my mask and didn't set around a lot of people and I think we are going to try to go to a Rome braves game next week. I still get tired pretty easy, out of breath, and have terrible swelling in my feet. I also have good news. I have been wanting to get dressed more and seem to care more about what I look like. I think that that has a lot to do with it being warmer, you know how I like my dresses. Most people at this stage, I’m guessing are wanting their hair to come back asap. I’m telling ya, I’m in no hurry. I think I like being bald because I love hats, wigs, and scarfs so much. I never likes washing or fixing my hair. So in your prayers you don’t have to worry about hair J

                  I followed up with the Gyno today about the early menopause situation. Right now they say that my levels are off and I have a thin uterus and the levels will continue to go up. The good news is that I found out that I could one day still carry a baby using Jonathan's sperm and a donated egg, where we would actually know a lot about the donor. I don't know if that is that is the path God will have us go on but it was comforting to find out some good news! 

I'll update you on Friday!