Wicked was Awesome!!

Last night my cousin and I went to see Wicked and it was AWESOME!! We went to Blu Sushi before hand for dinner...it was yummy. We shared two appetizers, tuna tataki and edamame then we each had our own sushi roll. It was just enough food that I wasn't hungry but I wasn't stuffed full which is good when you have to sit through a 3 1/2 hour show!

I got home at 11:30pm so of course didn't get to bed till almost 2:00am. Today it has been raining ALL day outside perfect weather to sleep in! Danny has even been lazin around today and he does not do that often.

Here are some pictures from last night...we got yelled at SEVERAL times for taking pictures, they thought we were taking pictures of the stage (the first time we were) but once we were told not to do that we started taking pictures of ourselves and we still got in trouble cause they thought we were taking pictures of the stage!! I tell ya we always get in trouble together. :)

Picture of us waiting to go in before the show

The stage...before we got yelled at!! :)

Last picture before we put the camera's away!

I always have a good time when me and Kasey get together, we used to go to lunch a couple of times a month when I worked by her work but since I work from home now we don't see each other that often. We will definitely have to have more "girls night out" I had a blast! :)

It's almost time.....

On Saturday my cousin Kasey and I are going to see Wicked!! I am SUPER excited and can't
wait, I know it will be fabulous! :)

Weekend Update!

So Saturday was a great day. I woke up, Danny made me and my sister breakfast, I did all my morning meds and by 11:30 me and my sister where out of the house and on our way to the first store.

We were gone ALL day and didn't get home till 5:00. We had so much fun and the best part was I had the energy to walk the entire time without sitting down and needing a break. I did have my O2 with me but usually even with oxygen I still need to take a break but this time I was fine! It was so nice to be feeling good and be out an about. It sure as heck beats being stuck at home or in the hospital!

Once we got home we planted my new flowers in there pots (that was funny we had potting soil everywhere!!) Then we watched TV for awhile waiting for Danny to get home and then we went back out to get dinner and go to Target! I was so tired by the end of the night that as soon as my head hit the pillow I was out like a light! :)

Here are some photos of my pretty flowers....lets just hope I can keep them alive!!

Sooner or later my house will come together. We have lived here a little over a year and its just now starting to feel homey to me. A little at a time....

First Night Free!

Well we went out to eat tonight to one of our favorite restaurants. Great food, great sushi, great family and friends...just an overall good time because I was FREE!!!

Tomorrow my sister and I are shopping....I have a baby shower on Sunday that I have to buy stuff for (I love buying baby stuff) plus I want to get some pots for some flowers I bought last night at Home Depot for my front entryway. I can't believe I just wrote that sentence....I used to wait in the car when my mom went to Home Depot cause I dreaded that store and now I am excited to go and pick out flowers! Am I turning into my mother??!! :)

Here are a couple pictures of me and my little sister Jessica from dinner tonight:

Jess with her kiddie chopsticks!

Good Night!
XoxoX

IM Free!!

I am all done with my abx and I got de-accessed a couple of hours ago...HOORAY!! :)

My little sister is coming up tonight to stay the weekend with us and tonight we are going to Sakura...its a Japanese Steakhouse we go to often so everyone there knows us. I can't wait its been awhile since I have been there since I was in the hospital for 3 weeks!

I got the ok from my tx center to start AzLi. Now I am just waiting on my DR here to get me started. I will be sure to let you know when I start it and what I think about it.

I wanted to say thank you to Christy for commenting on my wedding pics...I think they are great too! ;) I have a ton more that I would love to put up but I thought 3 was enough. Maybe I will make a slide show and post it sometime soon! I can't believe June will be 2 years already....time flys when your in love!

2 more days!

I am almost done with my abx...only 2 more days!! I can't wait this itchiness HAS to be over soon.

Also, I would like to pat myself on the back a little bit and say that since I have been home (since last Friday) I have only had 3 cokes! I know that might not sound like a big accomplishment for most but for me that is AMAZING! I couldn't quit cold turkey but I think for someone who drank nothing but coke...only having 3 is pretty good.

I have been drinking a ton of water and some iced tea with a little splenda in it. I haven't noticed a huge difference yet (it hasn't even been a week!) but I know that I am doing a good thing not drinking soda all the time and it will benefit me in the long run.

On a side note...I am kind of annoyed with my tx center. I called them last week and spoke to my coordinator, I told her I needed there OK to start the AzLi clinical trial. She said she would talk to the doctor then call me back....well guess what I haven't heard from her. I just called and left a message so hopefully I hear something tomorrow. I just really want to start this...I will try anything that will allow me to maybe feel better and get my FEV1 up, even if its by 2 points! Anything is an improvement to what it is now.

Going Crazy!!

I am going crazy because one of the antibiotics I am on (Fortaz) makes me so itchy I want to crawl out of my skin!

When I am in the hospital, if I feel itchy I am allowed Benadryl through my IV which works INSTANTLY and then I am no longer itchy. But at home I can only take the Benadryl by mouth and that doesn't help at all!

I only have to last until Friday but I am not sure if I can. :(

Home

Well I am home....and I am already tired of doing my abx myself! Don't get me wrong I love that I am home and not in the hospital its just extremely tiring to do everything.

I am also feeling very puffy today. For some reason today is the first day I am really noticing it...im not surprised I have been on steroids for 3 weeks now, I will be done on Wednesday so I should go back to normal after that. I have been drinking lots of water and just trying to stay hydrated and that seems to help a little.

Other than that I don't really have much to report. Danny and I are going to my parents house tomorrow to pick up Brodie I am excited to see my little guy! My parents are also giving us there treadmill which we will bring home tomorrow too.

Great Night!

I just had a wonderful night! I got to go out on pass and went to see New Kids on the Block! It was a last minute thing, my mom got two tickets and called me at like 3:30 to see if I was able to leave the hospital for a 7:30 show.

Luckily my doctor ok'd it and we just pushed back a couple of meds so I could come back late. The concert was great and at one point during the show they all walked right by us and Donnie stopped right in front of me. I froze and didn't even take a picture!! Oh well.

It was very funny how most of the women were acting though...can we say mid-life crisis?? One woman had a t-shirt made that said "Sorry Jordan I am married now"...right because other words he'd be all over it! :)

Jonathon and Joey were always my favorite and let me tell you Jonathon has only gotten better with age!

I am going home tomorrow and I was right I will be on abx for another week...I am just glad to be going home. Good Night! XoxoX

Tomorrows the day!!

I get to go home tomorrow!! I am going home on abx I am just not sure how long...if I had to guess I would say another week.

My doctor would also like me to start an aerosol that is still in the clinical trials. It is called Aztreonam Lysine for Inhalation. It would be an aerosol 3 times a day every other month (taking the place of the Coliston I do now.) He says I fit in the criteria needed for the study and its supposed to improve your FEV1. I had to call Shands yesterday to get there ok so I am waiting to hear back from them on that.

Has anyone else heard about this study or is anyone else on it already?? I would love to get some feed back on what you all think.

No more Bipap

I saw my doctor this morning. We have come to the agreement that the bipap machine is NOT for me. I felt really bad, like I was letting him down but he said it was ok and that some treatments weren't for everybody.

We are going to work on getting my O2 back down and the plan is to have me go home sometime this week. I am so ready to get out of here! :)

Not a good day...

So last night I tried the bipap. It didn't last very long before I took it off because it wasn't ramping up right so I was going to fix it today to try again tonight.

Well, as soon as I took off the bipap I felt a little funny when I took in a breath but figured I just wasn't used to the "puff" of air the bipap was giving me. I had kind of had rough night because of the funny feeling and when I woke up this morning my lungs ached really bad. Plus I had a fever.

When I saw the on call doctor and I told him how I felt and thought it was from the bipap he looked at me like I was crazy and said the bipap wouldn't cause me to be achy. But my thought is if the bipap blows air into the lungs so that you take a deeper breath wouldn't it make sense that your lungs would hurt because its not used to opening that much? Just like a muscle hurting after you workout??

I feel better now but it has taken me all day to feel better. I am not using the bipap tonight I am waiting until I see Dr. Faverio on Monday to see what he thinks. I am really afraid to use it and possibly cause something bad to happen. I was feeling better and everything and now my O2 had to be raised today because of my lungs hurting so hopefully tomorrow it can go back down. I will let you know how I do....

Busted Out....

I went out on pass today!! Hooray for me! My friend Karen came and picked me up and we did a little retail therapy.....that always makes a girl feel better. :) It was such a beautiful day outside today, 72 to be exact....way to nice to be stuck inside.

The home bipap machine was delivered today. I must admit the machine itself isn't as scary looking as I thought it was going to be. I am still waiting on a nose piece, they had to order me an x-small prong the one I have doesn't fit in my nose! It should be here tomorrow and then tomorrow night will be my first night trying to sleep with it on. Keep all your fingers crossed and wish me luck that I do well.

American Idols on tonight....who do you think will go through??

It's Over!!!

Does this look like a happy camper to you? LOL...


I took my cell phone down to the sleep lab with me last night and snapped a quick picture once they were done attaching every cord in the hospital to my head! Needless to say it wasn't easy to sleep like that and I am VERY tired today and will probably be taking a nap later.

I saw my doctor for a quick moment this morning and he said the x-ray that I got yesterday has improved a bunch from when I was first admitted. The 2 mucous plugs that were in my left lung are gone and I just have a little bit of mucous left in the lower lobes of both lungs that we are going to continue to try and beat out!!

I just got all the goop washed out of my hair from last night and will be going to walk on the treadmill shortly. Be back soon!! :)

Quiet Weekend

Weekends in the hospital for me are ALWAYS the worst. There is no daytime tv to keep me company and everyone I know is off doing "normal" things while I am here doing nothing.

Luckily, I have the computer to keep me occupied and since I have been thinking so much lately about the food I eat I have been spending most of my time reading anything I can find on the subject. Which I still have a lot of questions about and will be picking your brains later! :)

I have watched some good movies over the last coupe of days. Yesterday I watched Doubt and Frost/Nixon and so far today I have watched Religulous. I really liked both of the movies from yesterday and can see why they were nominated for Academy Awards. Religulous was an ok movie and if you are offended easily when it comes to religion than its probably not the movie for you I just wanted to see what all the "controversy" was about.

Tomorrow night is my sleep study. I am NOT looking forward to it and I will definitely let you all know how it goes.