Ports and Books and Food...Oh My!

Maybe blogging will work out for me this time. It's a really good way to keep busy and I love writing. I went to have my port needle changed for the first time today! I was so nervous, especially since the woman next to me at the place also had a port and she was having to be rushed to the hospital because hers clotted up. It wasn't as bad as I thought it would be. The nurses there used a needle that was smaller than the ones at the hospital. They also used a different dressing that doesn't make me want to itch my skin off, thank goodness! So it went well. Still not happy with the port, but I'm sure that will change in time. On the subject of the port...does anyone have any suggestions on keeping it dry in the shower? The hospital said Glad press and seal with some tape. I've tried it. I even tried layers of it using whole rolls of tape but the dressing always gets wet. Any suggestions would be greatly appreciated.
I'm reading the book The Fault in our Stars by John Green because I saw many CFers talking about it. I'm loving it! I'm not done with it yet, but I highly recommend it. I love the main character's perspective. Does anyone know of any books about someone with CF that are a good read? If not I may need to write one. That'd be fun. I don't know what I'd talk about but still...I could try. I'm definitely a reader and a writer.
This post is jumping around a lot but I write about what my brain tells me at the moment and I always have 50 million thoughts going on.
It's weird being out of school while all my friends are back in. This break from school is giving me a chance to relax and do stuff I want. By the way, thanks for all the support on that decision y'all! This is going to sound super lame but last night I was super proud of myself and felt so accomplished. What did I do to feel like this? Well I went grocery shopping and managed to get food to make 8 dinners, snacks, and my life necessities ( Mountain Dew and Masterpiece barbecue sauce). I got all that food for  $135. I'm trying to be a smart shopper. Next shopping trip will be less money but more food. That's my goal. One last thing for this blog. I got a crockpot for Christmas and I'm downright obsessed. Does that make me an adult?

Calling all Cysters and Fibros

Hey y'all! I'm currently writing this blog via my iPhone so please forgive me if I make some mistakes. My apartment does not have internet anymore. Anyways!!!! I have never really got to know anyone with CF. So I'm calling for all my Cysters and Fibros! I want some CF friends. It's nice to be able to have people who actually understand. If I try to talk to my friends about things, they can get uncomfortable or can't fully understand. Sometimes I tend to have a dark sense of humor and I also like to openly talk about things others feel are scary, like dying and stuff of that nature. I need people I can talk to, people who understand! I'm fun, at least I think so.  I just want to make some new friends with CF. So come on!!!
On another note, my endocrinologist has put me on 10 units of lantus at night but when I take it my blood sugar drops too low. Anyone else have this problem?

In need of a boat...or a new apartment!

Wow two posts in one day...I am already doing better than last time.
I am currently living in an apartment in Charleston. If y'all know anything about Charleston, you know that when it rains, it floods. I have the perfect flood joke..ready for it?

Need an ark?...I Noah guy. Hahahahahaha! 

See, my apartment is on the first floor and right by the main doors to the building. Since I have lived there, which has only been a month, my apartment has flooded 5 times (no lie). But my apartment does not fill up with water from the rain coming in under my door or anything. The water that soaks the floors in my apartment comes from an interior wall. Apparently a pipe that comes off the roof is rusted out in the walls in the apartment above me. Every time it rains the carpet in my apartment becomes soaking wet. When I walk on it, little puddles form around my feet.

 This is a problem. This water problem has caused mold everywhere on the walls. I cannot even imagine how molded the carpet must be underneath.

Now y'all are probably wondering why I don't just ask the landlord to fix it...well I have...multiple times. It still has not been fixed. These guys come in with a shop vac every time and shop vac my carpet a little. Then they take some bleach and rub my walls down. They even tore a wall down but did nothing else. They refuse to do anything else.

Now I know, I know, with my CF this is a serious problem. I mean MOLD everywhere?! Not good for my lungs. I can tell it takes a toll on me because I feel awful just being there or maybe its just the fact that it feels like I am in a tropical rain forest when I am there. I cannot get the landlord to see this as a serious problem nor can I get her to do anything about the mold or carpets. They need to be ripped up for real. So I am currently looking for a new place to live for around the same, if not lower price. Preferably a place that does not flood every time it rains. I am so over having to wear shoes to get to my kitchen. If anyone is interested in living in a rain forest or an apartment on the water, literally, please contact me, I know the perfect place.

Taking a semester off

I know I promised to be more of a blogger last year and I was a failure of epic proportions. This year will be different. I will have more time to blog. I am taking the semester off of school! This was a decision I deliberated on for weeks and weeks. I am still not completely happy with it but I know it is probably for the best.
*Flashback to last semester*
I was sick as could be and managed to get 3 PICC lines in four months. My FEV1 dipped to 22%. Despite all of this, I managed to not miss any class. I prided myself on being in class no matter how sick I was. I am an early childhood education major so I worked in a school this past semester with kindergartners. As much as I loved my kinderbabies, they made me so sick. One week I could not even talk because I had coughed so much that I messed my throat up. I even spent a weekend in the hospital and got out just in time to be at my practicum school on Monday to teach my kinderbabies. School and my kinders were the most important things to me. My health fell by the wayside. My parents and doctors both urged me to put my health first but my stubborn 20 year old self had my eyes on the prize- a college degree.
*Back to now*
My health has declined once more. My chest is heavy and I can barely breathe. I have had massive cough attacks. I cannot taste or smell anything. Every night since New Year's Eve, I have coughed up copious amounts of blood. My FEV1 was at 32% and I had lost four pounds. My doctor decided it was time for another hospitalization. My doctor also thought getting a port was the best thing to do. Now I am a pretty skinny girl. I am only 5'2 and weigh a whopping 82 pounds. My main concern as a 20 year old female was how the port would make me look and how much it would stick out.
So I was hospitalized. The first night they stuck me four times before the nurses could finally successfully start an IV. That night should have signaled to me that this visit would be bad. I was stuck over 20 times within 6 days. I just seemed to get stuck with nurses that could not draw blood or start IVs. New nurses I am assuming but hey, they have to learn at some point. Lucky for them they got to practice on me and not someone who screams and cries at the sight of a needle. Then Monday I was wheeled down and put to sleep and my port was placed.  Now I am not going to lie, so far I hate it. It sticks out and looks hideous. But hopefully one it heals I will like it more. I am finally out of the hospital. I am still in lots of pain from the port. I feel even worse than before I went into the hospital.

School starts Monday. It feels weird to not be starting. I have been going to school since kindergarten with no breaks except summers. I feel lazy. I know I need to take this time to focus on my health. It is the most important, especially when my doctors are talking of sending me to talk to the transplant people. I just wish I did not feel like I was taking the easy way out. I need to find something to fill my time this semester between appointments and treatments. Blogging will probably be my saving grace to keep me from going crazy.

Apartment hunting is pure hell

I'm currently looking for apartments around my college to live in my junior and senior year. For all those that have never done it before...it is not fun. My older brother and I planned to be roommates so I've been looking for two bedroom ones. I had been looking everyday for a month and had yet to find anything. I pretty much exhausted Craigslist. Yesterday after riding around I finally found the most perfect house, conveniently located and conveniently priced. Then my brother backed out of me in favor of living with a friend. So now I'm both homeless and roommate-less. Hopefully things turn around and soon. For now its back to square one...searching for more apartments.

Sorority...to rush or not to rush

When I was a freshman I had no desire to join the Greek system. After two years of watching girls sport sorority attire and the bonds of sisterhood, I'm starting to reconsider my decision. As a junior I'm now faced with the decision to rush or not to. Typically upperclassmen do not receive bids as easily as  freshmen from what I've heard. There are pros and cons to rushing for me.

Pros:

• Big group of friends/sisters
• Connections for my future
• Social activities
• Fun
• Service

Cons:

• Cost a good bit of money
• Big time commitment
• Might not get a bid anyways after I spend the money to rush

Although I feel it would be fun and the pros outweigh the cons as anyone can see above, I probably will not rush. As a college student and a junior at that I have to focus on school. I'm down to my classes specifically for my major.  Plus I have rent to pay and bills. Gosh I just don't know what to do.

So it has been awhile....

Looking back on my last post I realize it has been forever and a day since I have blogged. So much has happened in my life that blogging just kind of took a backseat. I switched schools again...I know, I know... so indecisive. I'm finally at a college for good. I'll be starting my junior year soon...so excited! My boyfriend and I broke up for a couple months but recently reconnected and started dating again. I spent time with old and new friends. I've had the time of my life. I've experienced so much and learned so many lessons. I even went to Dayglow or Life in Color as its now called. So fun!!!

 My semester ended and then I went to have sinus surgery performed. My doctor recommended I go to an ENT who then decided sinus surgery would be the best thing. They were both under the assumption that bacteria in my sinuses were reinfecting my lungs causing exacerbations. They thought maybe it would help my CF. It seemed like a simple procedure. The ENT even said that I would most likely keep getting the procedure because I wanted it! He said it would make me feel so much better. The place I had my surgery at was two hours away from my home. I arrived and got prepped for surgery. I went back and they started putting something through my IV, not sure what but it made me very calm. I  heard the doctors talking but couldn't really understand. A surgery that wasn't suppose to take very long ended up taking several hours. In recovery my mom was told they wanted to transport me to a hospital. My doctor from home called my mom and let her know my oxygen was low before surgery and dropped pretty low during surgery. None of the people at the surgery place bothered to tell us before or during the surgery. Needless to say I went home that day, not the hospital, but was on oxygen for weeks after the surgery.  My functions plummeted from the 50s to the low 30s. I was in bad shape. I had to go in for a PICC line a couple days after.

 The sinus headaches never went away and I never felt better. My functions are back up but I would not consider getting the surgery again. I recently had to go back to the ENT where they removed scabs from inside my sinuses. If you look close you can see the red light shining through my mouth, nose, and eyes.

 I  wonder if anyone else had an experience like mine. I am going to get back on my blogging game. I just feel like my life isn't exciting enough to blog all the time but I'll try.