Thursday, November 27, 2008

Happy Thanksgiving!!

I hope everyone has a fun, safe day and eat lots of yummy food!! I am actually getting to go to my moms house for a few hours today so I am thankful for not having to spend the entire day in the hospital!

Have a GREAT day everyone! :)

Wednesday, November 26, 2008


I have been waiting for an hour for medication for my headache.....
I have called the nurses station 3 times......
I am still waiting....

Tuesday, November 25, 2008

Question of the day...

From my nurse today: "So have you had this your whole life??"

WTF!!! I was like Yeah....I was born with it.

Then she's like: "So why do you need to take enzymes?"

I said: "Well, CF affects the lungs AND the digestive system so I need the enzymes to help digest my food."

Nurse: "Oh well I knew the lungs part but I didn't know it affected your digestion."

I just looked at her in amazement....I mean what do you even say to that? I told my doctor and he couldn't believe it either. He says I might get to move back down stairs by Thursday. I think its pretty sad when I can't get qualified help unless I am in pediatrics!!

Room Change

So my doctor is the same doctor that I have had since I was a kid...which makes him a Pediatric Pulmonologist. When I am admitted to the hospital I am placed in the pediatric ward still which is fine by me! I know all the nurses and I am comfortable being there.

Well, last night a kid needed to be admitted and there wasn't any other private rooms guess who got bumped to the adult floor?? I was really upset and still am not very happy but what are you gonna do. The rooms are MUCH nicer, bigger and newer but I would rather have an old small room with nurses that I know and where I am comfortable, than where I am with nurses that know NOTHING about CF. Seriously, when I say they know nothing I MEAN nothing!

I haven't seen my doctor yet today which is unusual for him...he probably knows I am upset! I am still having headaches and I still feel kind of crappy so I will keep you posted on that too.

Sunday, November 23, 2008

I am in the hospital

I just wasn't feeling ANY better and I want to be able to be with my family on Thanksgiving so I admitted myself tonight so that HOPEFULLY I can go to my moms house on Thursday and feel a little better than I have this week!

I have not slept in 5 nights due to my horrible headaches so I am just looking forward to some sleep!! Plus my appetite this week has been pretty much non-existent so I didn't want my weight drastically affected by not feeling good as well.

The only bad thing is that my doc wasn't on call today so I am being admitted by a doctor who doesn't really know my routine but that's ok I will see Dr. Faverio tomorrow! I will keep you updated on how I feel.

Wednesday, November 19, 2008

Christmas Background!!

I changed my background for Christmas....what do you think??

Got a call back...

My doctor's office called me back. He is starting me on 14 days of Cipro along with Colistin via nebulizer (I am on this every other month anyway but this is supposed to be my off month) I am also supposed to increase my albuterol treatments to 4 times a day. Hopefully the combo of all these meds will help me feel better and maybe I can get some sleep tonight!!


The last 3 days I have woke up with the worst headaches I have ever had. At first I thought it was my pillow causing me all the problems because when I woke up the pain was at the back of my head where my spine meets but then once I would get up it would move to my whole head. When I take 600mg Ibuprofen I am fine but once it wares of its back again AND now its starting to effect my sleep...the last 2 nights I was up almost all night because of my head! I am going to call Dr. Faverio's office soon to let him know and see what he thinks. I will let you know the outcome.

Sunday, November 9, 2008

Still in Pain!!

My arms still has gotten better but they are still achy. At this point its more annoying than anything I just want it to go away!!

We did pretty much nothing this weekend. There is a fair called the coconut festival that they have every year with bands that come and play and carnival food and rides. We didn't go but it is so close to our house we could sit on the deck in our backyard and watch the fireworks display Friday night. We could hear the bands too but it wasn't anybody that great. Friday I think was some country guy and Saturday they had a Journey tribute band (which I love Journey but a tribute band isn't the "real" Journey) and Survivor who's only claim to fame is "Eye of the Tiger!!"

Danny worked yesterday during the day and he is working again right now, hopefully it won't be ALL day! There is supposed to be a HUGE sale at Michaels today so I want to go and see about getting picture frames for all the pictures we got done last weekend with the family! I also need to see about getting a tree skirt and topper for my Christmas tree! This will be the first year I am putting up a tree in our house. Last year we moved in a few days before Christmas so I didn't see the use in putting up all the decorations just to take them down in a week. So needless to say I am REALLY excited! If I am going to be honest (we are all in the trust tree here right??) my Christmas tree box is already in my living room!! I am thinking about putting it up sometime this week and having it decorated by next weekend.

I don't have a lot of decorations for the house but I am gonna try and not buy anything and then the day after Christmas get a whole bunch of things for NEXT year. That way I get everything on sale!!

Well, I think I am going to make something for lunch....have a great Sunday everyone!!

Thursday, November 6, 2008


I know I haven't written in awhile but I have had a lot going on. Last weekend we had a Halloween party Friday night that we went to at our friends house, it was a lot of fun but I didn't dress up. I know what you are thinking....How can you go to a Halloween party and not dress up?? Well I HATE dressing up and I never do it and my friends love me anyway! I did put little devil horns on my head but that is as good as it gets! :)

Saturday I hung around the house and made 2 pies and homemade potato salad for Sunday and then Saturday night we just went out to eat with some friends. We went to a steak house that we haven't been to in probably 2 years (you know the ones where you can eat peanuts and throw the shells on the floor) and boy has it gone down...I remember the steak being awesome and it was less than satisfactory and so was everyone else's!

Sunday, we had to get up super early because we were getting family portraits done with my family. It took a long time but they turned out really good! I will try and put some of them up later. My whole family then came back to our house and we watched football and hung out and had some awesome food! All in all it was a good weekend.

Now for this week...I have had something to do everyday thanks to Gainesville. Remember the post where I was all happy and I couldn't believe how fast my doctors appt was last time we went? Well I get a call from the tx coordinator last week saying that if I wait until my next appt (sometime in January) all my test will be expired and that I need to come back up to Gainesville sometime before Thanksgiving to do them. Now we were JUST there and I did not want to go back already so I asked if I could do them in town and fax the results to her and she said yes...thank goodness! So Monday I had to do a PFT at my doctors office then go next door and wait for an hour just to get a simple BMP drawn! Then yesterday I had to do a six minute walk and not to mention I need my port flushed!! Its never ending....

To top it all off Monday when I woke up from taking a nap my arms were hurting really bad. I sometimes get what feels like arthritis pain (but it isn't arthritis). It comes and goes and there isn't really any rhyme or reason for it. Luckily, I haven't had to deal with it in well over a year but it is annoying! Right now it is affecting both shoulders, both my wrist and some of my fingers. Its just really usually last for about a week and it is WAY worse when I first wake up in the morning. Has anybody else heard of this??

Well, I am off to run some errands....hopefully later I can get some pictures up here from Halloween and my family pictures!