A new week and it looks like I am back on the top of the roller coaster! My WBC are back to normal and I feel great. The doctor said this will be my life for the next 6 months...a roller coaster. I get chemo again in 2 weeks so after that this will all start over. My labs for my kidneys are back down again, so we are a little concerned on why the chemo is not working yet, but hopefully the next round will work better. My hair is starting to fall out so I'm not sure if we will have to cross the whole "wig" bridge soon or not. Right now it is just thinning so we'll see.
We are still working on the whole getting our money back for our trip. Basically the airline will only let us exchange our tickets for a different ticket of the same value or greater, however it has to be booked by March 2009 and we have to pay an additional $120/ticket for a "fee". Ross is going to call back and talk to "management" to see if we can provide a doctors note or something to get our full refund back. Doesn't look too promising, but we have to try! My mom will cancel the timeshare we were suppose to stay at and she will also get charged a cancellation fee. We feel so bad since we had this trip booked last year and then found out I was pregnant and didn't want to go to Mexico 7 months pregnant! I'm starting to think we are not meant to go to Mexico, so our next trip will be booked somewhere far far away from there:)
A friend of a friend gave me this website called http://www.butyoudontlooksick.com/ It is a website about living life with a disability, disease, etc and provides some answers to questions, etc. I found this article about a mother who's daughter has lupus and thought I would share it:
http://www.butyoudontlooksick.com/2008/05/a_mothers_view.php It made me really realize that I am not only suffering from this, but my family is also. I never really looked at what Ross or my parents go through on a daily basis with me. As a parent myself, I can't imagine what goes on in my mom and dad's head. I cannot imagine Nolan being sick with a disease, can't imagine the pain of not being able to do anything to make it go away, constantly worrying if he will get better or worse and if we are making the right decisions for treatment. Then, there is Ross....wow what he goes through for me! I guess what you promise when you get married "In sickness and health...." is really coming through right now:) He is in constant worry about me. He never knows what "Anne" will wake up in the morning, the happy energetic Anne, or the tired, crabby, in pain Anne. (Yes I have multiple personalities right now!!!) He saves his sick days at work in case he will have to take them to care for me or the kids, lets me nap whenever, does laundry, dinner & cleaning, picks up my weekly prescriptions, will run to the store in a second if I need something, takes the kids out of the house if I need "Anne time" and still manages to keep a smile on his face! He truly is an amazing man!
I just got put on an acid reflux medicine to hopefully help the chest pain. Knock on wood but I have not had any chest pain in almost 5 days now so I'm hoping the medication is working!!! I think those are my updates for now!
Nolan being rambo on his new toy....
No comments:
Post a Comment