Sunday, February 20, 2011

Day 5

Day 5 - A Picture of your Favorite Memory



I have always loved holidays. Mainly, because it gets everyone together, I also happen to enjoy the yummy food that usually accompanies the festivities! Christmas was always my favorite. My older sisters, Terrianne and Jeanine were out of the house by the time I was born, so it was just me, Tricia and Christine on Christmas Eve. My mother always dressed us in matching pajamas and we all slept cuddled in one bed. We tried to stay up as late as we possibly could so that we might hear Santa's sleigh or something else miraculous. We sometimes siked ourselves out and really believed that we heard rustling on our rooftop (mind you, we have NO chimney! so I don't know how Santa would get down!).
The next morning we couldn't get our parents up fast enough. Then the dreaded wait at the top of the stairs, waiting for my parents to get the video camera set up JUST RIGHT. Every year, the same thing and every year it felt like a MILLION hours passed by before they finally said "Okay girls, time to come down".
After the rush and craziness of opening all of our presents, we went down the block. My Aunt, Uncle and cousin live two houses away from us. Every year we would make Christmas breakfast and eat as a large, extended family. Around 2-3 in the afternoon my older sisters came over, and it was like Christmas all over again.
Growing up now, seeing that Christmas is not the awe inspiring holiday it used to be is kind of depressing. I still love Christmas but it's just not the same. I can't wait to have my own kids one day, because I think then it will start to be exciting again. I love watching my niece and nephews open gifts and talk about Santa Claus. Holidays were so amazing and magical when you were little and just believed!

Friday, February 18, 2011

Fevers .. again

Okay so I have been running a fever again. Yesterday the highest it hit was 101.7, and even though I have had fevers as high as 108! (yes, that's right) in the past - with an implanted port they always worry that there is an infection. So they did blood cultures yesterday and it will be a few days before we get the results. They started me on the medication that worked for the last two port infections I had just to be proactive incase it is in fact a port infection (which i hope to god it isn't!).
I have strict instructions that if my fever goes above 101.5 again that I have to go straight to the ER. They are worried about my oxygenation status, dehydration etc. I just really don't want to go back there! My doctor even said, Right now between the 6 antibiotics, the anti-fungal, the fluids and solu-medrol I'm pretty much covered for EVERYTHING. So WHYYYYY am I not getting better?

Wednesday, February 16, 2011

Day 4

Day 4 - A Picture of Your Night



Okay well my night is not so much fun. So here's a picture of me doing my first IV med of the night. My total night schedule takes a little of 4.5 hours. So yea that is all I will be doing! My boyfriend is working so he will stop by when he is done.
I have had quite a productive day however. Last night when my sister was accessing my port we weren't getting a blood return. We were both extremely confident that it was in the right place. I have also have issues with clots before so I was kind of freaking out. Not to mention this is already my THIRD port since July 2008! She called her friend over who is a pediatric home care nurse and also accesses ports to give it a try, also no luck. So today I went into the city to have a port study. They just accessed my port under fluoroscopy to make sure it was in the right place and checked to see what was causing the blockage. At the end of the catheter a tiny clot, a "fibrin sheath" in the medical world was starting to form. They were able to give me a clot busting medication called tPA (tissue plasminogen activator) which ran through my port for a little over an hour and cleared the blockage, HOORAY!

Tuesday, February 15, 2011

Day 3

Day 3 - A picture of the cast from your favorite show



Let me first preface this by saying that I have many favorite shows! I love nurse Jackie because it is funny and yet at the same time deals with real issues. I absolutely love the young nurse Chloe and Dr. Coop, who when he gets nervous grabs boobs.
The rest of my top fave shows: Say Yes to the Dress, Teen Mom 2, 90210, Gossip Girl, One Tree Hill, NCIS, and pretty much ANYTHING on HGTV. I love seeing people redoing their houses, or buying new places!

Monday, February 14, 2011

Day 2

Day 2 - A Picture of you and the person you have been closest with the longest.






I believe this section needs a few pictures. There are my sisters, who have been there for me and my bestest friends since I was born. There is also my cousin, who happens to be a year and a half younger than me but one of my closest confidants. We grew up living two houses away from each other, so we were more like sisters than anything else. Then there are the non-family related friendships. That prize of longevity goes to Sara.







Sara and I met in nursery school at the wee age of four and still remain close to this day (In the picture I am Little Red Riding Hood and she is a Ballerina). We went to school together all the way up until college, where I decided to go away to school and she stayed home. I'd like to say we stayed as close during that time, but college is a busy time for everyone. We still kept in contact although we didn't see each other as much.
Fast forward to today. We are still friends. We have been through rocky times. Her and I both have made mistakes in our friendship but as adults we realize that sometimes it's better to forgive and move on. Good friends don't come around often, so when you realize someone is really truly your friend, you better hold on tight and do everything to keep that friendship alive!

Sunday, February 13, 2011

Day 1

Day 1 - A picture of yourself with 15 Facts



1. I like pretty much ANYTHING with cheese on it.

2. Growing up with CF has really impacted my career choice in becoming a nurse. I've always had amazing nurses and I always wanted to be just like them. Now that I work with premature babies and their scared parents - I feel I am giving back somehow.

3. Speaking of work, I LOVE to work. I hate being sick and stuck at home. If I can I will work until my doctor literally tells me I can't anymore. Some people like to think that it puts a strain on me, etc. Work is my escape. I am taking care of someone else who is even sicker than myself and I can stop thinking about my own health while I am there.

4. I LOVE massages.

5. Getting my puppy Chloe was an extremely spontaneous adventure after a lovely dinner and glass or two of pinot grigio, but I would be lost without her!

6. I am 27 and unfortunately, am just learning the very hard lesson of who my true friends are and who is just out for themselves.

7. PINK is my favorite color.

8. I love shopping for make-up, bags and shoes.

9. My family and I are extremely CLOSE. I have four sisters and they are all my best friends.

10. I'm kind of terrified of the ocean, and I can't really swim too well. Although I WISH that I could swim and didn't fear the water because I would one day like to try surfing.

11. I'm kind of a nerd. I love to read books. I was class president in high school and senior class president in nursing school. One day I would actually like to teach future nurses!

12. I have been dating the most amazing guy since April 2008 and he is my absolute rock.

13. On a good day, when my lungs aren't hurting - I like to drive around and sing at the top of my lungs.

14. I'm not yet engaged, but I'm pretty sure I know my exact wedding dress AND my bridesmaid dresses! (a girl can dream!).

15. I sometimes have somewhat of a potty mouth - which surprises some people because they think I'm this sweet, innocent girl, but that's not really me. I'm quite complex.

Friday, February 11, 2011

feeling slightly better for the first time in 4 weeks!

video

I woke up feeling pretty crappy - but not AS horrible as I have been the past four weeks. My sister, brother-in-law and nephews came over and spent some time. I colored with my godson and just had a good time. They seriously melt my heart. Andrew will be three next month and Matt is 18 months. I was actually off of oxygen for a good two-three hours and took my pulse ox and it was 97 on room air! I could barely believe my eyes.
My sister was just saying yesterday that I am usually the type of person who doesn't gradually get better but that I sometimes just wake up one day and am a completely different person. If that's the case, I can't wait to see what tomorrow brings.
My video blog up there is just a brief little statement of how I feel and how much I am loving blogging. My family, boyfriend and friends have been amazing. My parents, sisters and boyfriend in particular have been in and out of the hospital with me, they have sat with me and just listened to me cry and vent all of my frustrations. A few of my friends have stopped by and spent time with me now that I'm home and much more accessible than Manhattan. Last but not least, I have learned and been inspired by all of the CF'ers whose blogs I'm following. CF is definitely a scary disease. Even scarier since they stress cross-contamination and pretty much alienate you from bonding with the only other people who are going through the exact same thing. The internet has changed that. It's amazing to see everyone be so brutally honest and divulge some pretty serious, deep stuff but at the same time it's refreshing because sometime's I read something and I have that moment where I say "Oh my god, this person knows to a T what I am going through". That in and of itself is an amazing gift. I've also realized how damn STRONG we CF'ers are!

Wednesday, February 9, 2011

Still on IV's

I went to the doctor's the other day and of course not much has changed. She said that I am definitely heading in the right direction and that my lungs sound much better now than when I was in the ICU two weeks ago, but they are still not great. Let's face it, that much I knew. I feel horrible still. For a few days I was able to sit at rest without oxygen but all of a sudden I need it 24/7 again. I am so exhausted I find myself sleeping whenever I get a chance, which isn't often with the medication schedule I am on. My weight has fallen again to 97 pounds which isn't horrible - but right before this hospitalization I was actually up to 110! I was able to wear all of my old jeans and it felt amazing. After my hospitalization in July/August I had slipped down to 88 pounds and was wearing a size 12 from the little girls store Justice. I am going back to the doctor again on monday and we will do a PFT, XRAY and decide whether or not to stay on IV's. If I continue, I will most likely look into going on short term disability for work, which is the last thing in the world I want to do. However, I know that I really need to just think of myself and put my health above everything else. I know what I need to do, it's just so hard when the majority of your life CF never interfered and now that's all it seems like it's doing. Well that's it for now, I am going to try and get some sleep. Good night all!

Sunday, February 6, 2011

Frustrated ..

So my friends it's super bowl sunday. While I am not an avid football fan, I must say I usually enjoy watching the game for the funny commercials, and of course the awesome food! I was supposed to go over to Joey's house and watch with his family - but am home instead. Last night I actually did my meds a little early so I could get a good night sleep. Well after laying in my bed wide awake for about 3 hours I decided maybe I would be more comfortable on the couch. My puppy Chloe followed me downstairs and laid next to me. I don't know if it's the steroids or what - but my head felt like it was so tired and the rest of my body felt like it just couldn't stay still. After a few hours of getting up and repositioning myself even my puppy got annoyed and slept on the floor next to me. At 8am when my alarm went off to start my morning meds - I was STILL awake.
Tomorrow marks three weeks on IV's (TRIPLE antibiotics, steroids and fluids PLUS two oral antibiotics). While I am healthier than I was in the ICU just a few weeks ago, I feel I am really lagging on the recovery part. I have managed to go parts of the day without wearing oxygen and feel okay, but if I walk even 10ft I get so short of breath and need oxygen immediately. My o2 sats drop to the 80's and my heart rate sometimes hits 160-170. This is NOT OKAY.
I really wanted to return to work this week but I don't see that happening at this rate. I am so torn whether I should just go out on disability or maybe give myself one more week. Problem is, I've already been out three weeks AND used all of my remaining vacation and holiday time. I am in the negative when it comes to sick days.
I don't know if maybe I'd be better off back in the hospital, where I don't have to worry about hooking myself up to all of these medications at crazy hours or whether I should keep fighting from home. I'm just so exhausted and I want to feel better.