Not done yet ..

So, It looks like I am stuck with IV for another week. My doctor thinks that if I come off now, I will just end up getting really sick again very soon, because I just had surgery last week. He is also adding on another medicine (IV Cipro) for this last remaining week. I am so ready to be off this stuff! I don't even remember what it feels like NOT having a PICC line in my arm. I am surprised this one has been in since November and is still working!

My doctor is also trying to get me a new medicine, inhaled Aztreonam, but with our wonderful government and president (can you sense my sarcasm?) it is so difficult now to get patients medicines that need prior authorization .. nothing happens on the same day anymore, and she has been trying for almost a week now to get things rolling so I can get this medicine.

Today was another nice day. Brianna is getting to be such a little kid, it's so much fun!! We went to Tanger Outlets and walked around for almost 2 hours. We got lunch, she went on some rides and then we ended the day with ice cream. I had a Haagen Daaz shake, I need those extra calories!!

We had a nice bbq with my parents for dinner, which definitely kicked off the "spring feeling" .. first bbq of 2010! wooo hooo!

Tomorrow I HAVE to clean, my house looks like it threw up. Well the kitchen anyways. Goodnight all :)

Spring is coming!

Today was a nice day .. It was the nicest day we have had here on Long Island in a while. I got to play outside with Brianna for a couple of hours, which she LOVED - pulled her in her wagon, threw snowballs with some of the last snow on the ground, and pushed her in her swing. She absolutely loves going high, and laughs hysterically when I push her higher & higher. I am feeling better from my sinus surgery .. my sinuses still have some dissolvable packing in them and are a little sore .. but my body and muscles are feeling much better! I still have my PICC line in, and am on Cefepime .. my PICC is starting to hurt a bit, and I am worried that it isn't going to last much longer. I have had it in since November, and I think 3-4 months is the max a PICC can stay in for ..

My sputum is still pretty gross, it's dark green and lots of plugs. I am doing my chest PT and my clearance, but I am still having bad right lung pain as well. I have to call my CF doctor on Monday and demand an x-ray. It has been a while since my last x-ray, but with my last PFT at 48% and this lung pain, along with the hymoptysis, I want to see what is going on in there!

Probably just plugging and some more scarring .. we shall see.

I am also trying to take in LOTS of extra calories. 1 Snickers bar is 280 calories, and the yogurt I am loving is 170 calories .. plus my Scandi shake now is 600 calories .. just making sure I keep up with the insulin or else taking in all these calories will do nothing! I neeeed to gain weight back - I can not take being 105 pounds anymore! I refuse to buy all new clothing because NONE of my clothes fit. Come on, weight .. pack on!!!!!!!!

And on another note - I am keeping one of my best friends in my thoughts .. Tom Nevins is back in the hospital :( I was so worried not hearing from him for a few days. I knew something was going on. He is in the PCU for an infection in his lungs and shingles again :( I hope he will be okay. Tom, if you are reading this - GET BETTER!!!!!!

Goodnight all *

Welcome to my world

In this day and age, I am lucky that I know how to work an iPod. I figured it was time I started a blog, or as I like to think of it, an online journal. I will be using this to vent, share stories, experiences, and just free my mind. I used to write a lot, and now that I am so busy, I never do. I am on my laptop a lot, and this is something I can do easily.

Well .. what to write in my first post? I am still recovering from sinus surgery I had on March 2nd. It went well, and my sinuses feel great - my only complaint is my muscles and body! The anesthesia made me feel like I got hit by a truck. I can not even describe the pain. My butt cheeks hurt! My pelvis bones hurt - my muscles in my neck, chest, arms .. everything. It is from the drug that they use to relax the muscles during surgery. YIKES - I wish this didn't happen! Last time I had sinus surgery (September 29, 2009) my muscles in my chest hurt, but that was it. Not my WHOLE body! Thank goodness for painkillers!

Brianna is going to be 2 years old in 2 months. I don't know where the time is going. She is such a bundle of never ending joy. When I am down or overwhelmed with CF crap, I just look at her and my heart melts. She makes my life perfect. I just wish I felt good enough to be the kind of mother I always wanted to be - always doing something fun for/with her, having energy all the time .. etc. These last 2 years have been HARD - I have been on IV all the time, since I had Brianna. I don't know why my disease is progressing so quickly, but hopefully there are some new medicines on the way that will help me out so I can live my life, with my family, to the fullest : )