Tuesday, September 28, 2010

I'm most grateful for...

So my lost blog post was a negative one and I am very rarely negative. It takes to much effort being upset about things you have no control over. It's that much easier to find something good and dwell on that! So to counter effect my last negative post I wanted to write about the top 8 things I am most grateful for in my life!!

1. My family: I don't even know where to begin... family is the most important thing to me. My parents are amazing! My daddy works so hard so he can provide for the family and keep us kids happy and healthy. He makes me laugh and he knows everything there is so know about anything and he knows how to fix it all. Then there is my mom. She is basically a super mom. She gets up with me in the night when I am coughing and throwing up, she rubs my back when I am sick, she spends her whole day in the hospital when we are there, she makes us dinner and takes us shopping. Then when I moved up to Reno she sends packages of all sorts of fun stuff, she even sent me flowers on valentines day! She is the most amazing mom anyone could ask for. My brother and sister are great! My little brother is such a comedian and makes me laugh like nobody else can (he gets it from my daddy) He is also so freaking smart. When it comes to math, science, or video games you ask him the question and he can give you answer. My little sister is like my best friend. She is so amazing and strong. I look up to here. She goes to church, gets good grades in the IB program, keeps up her health and is an amazing runner for her schools xc team. She is also one of the sweetest girls I know and she deserves the very best in life. When someone is down in the house she will make them a card and do a chore for them... I have kept all the little cards she has ever made me and I love them. Then there is my extended family, and man are there alot of them! I am so blessed to have such a large amazing family. They always come visit when I am in the hospital bringing me food or sonic drinks! My cousins have always been some of my very best friends. My CF doesn't phase them but when I get sick I know they worry. Once I went away to school it was so hard not getting to see everyone ALL the time but we still talk ALOT. Stacey will randomly call or text me just to tell me she loves me, my Uncle Kish does the same. My Grandma writes me letters in the mail, and Boyd emails me just to say howdy. My cousins Dulcie and Sierra.... man they were more like sisters growing up then cousins. We use to spend SOOO much time together but as we grew up it got harder.My last night in vegas I got to spend with their family and I wouldn't have it any other way. This summer I had a cousin pass away in a horrible accident. I saw my family pull together like I never have before. We spent 3 days in the hospital with her family and after she passed we took food into the family and helped with the funeral. I have so much love and respect for my family.

2. My friends: While family always comes first many of friends end up being part of my family, and many times I into theirs! In high school I had my best friend Caitie. We had our fights but at the end of the day she was my best friend. We were attached at the hip, ask anyone who went to HS with us. We had out notebooks that we would write 10 page letters in, I basically lived at her house on the AF base, we had out inside jokes and P.S. I love you. Junior year I went through a really rough patch with health and some personal problems but even when she didn't agree with what I was doing she was there for me to cry to or to give me swift kick in the butt. When she moved to Georgia I was devastated but I got to spend two weeks down there after Christmas with her and her family and man was it a blast! She sent me cute little cards in the mail and we had plenty of Video Chat dates online. Even though today her and I aren't really friends anymore I owe alot to her. I'm the person I am today because of her. She taught me to be positive and to find the good in life. She taught me how to love and how to be a best friend. She also taught me what is important in life, and that change isn't always a bad thing. I am glad we were best friends for the 4 year that we were! Now I have my very best friends ever AND my roomies sherise and lorin!! I never knew a girl could have such great friends. We do everything together. They have been there for me during some really hard times and some how always seem to make it better! Freaking sherise can make me crack up laughing when I was just crying and Lorin is the sweetest person I have ever met. They don't let my CF phase them. They accept my CF as as much part of me as my eyes or blue. They enjoy going to doctors and they make sure I take care of myself. They even wait to go out so that I can get a treatment done. My entire family loves them and has made them apart of it. I don't know what I would of done last year without these girls. 2nd semester was a hard one health wise and some other personal issues but they were there 100% for me. Whether it was hugging me when I was crying, making me laugh till I cried, taking me to the hospital, or forcing me to eat when I was sick. I love them so much and am so glad we get to live together this year and probably years to come!! Then there is everyone else I hang out with and that I know I will always have a good time with there are just to many to name.

3. My Doctors: I owe my life to them, literally. They have become a part of my extended family. They got graduation invites and they will be at my wedding, I love them. There is the CF coordinator that would walk to the ends of the earth for me, the social worker in reno and vegas that care for my well being, my team of doctors (I have about 10 different ones) that get together or call each other to discuss what would work best for me, and scheduled so much of their lives around mine. Hearing them tell me how proud they are of me and how I have handled taking over my own care and balancing my life and CF means the world to me.

4. My Port: Getting my port this summer was the best discussion I have ever made! After only a couple weeks of being in reno and at school I got really sick and my numbers dropped by 10%!! Last year when that happened we did oral antibiotics and hoped it helped enough to get me till break so I can do a PICC in vegas well this time we started iv's through my port ASAP and man it makes a difference! I didn't skip a beat because I was back to feeling great in no time!

5. My Dad's Job: My dad has been a surveyor for the county for several years now. He works hard to provide everything we need and more, but sometimes it gets rough with three Cf kids the medical bills add up. Thankfully with this job we have amazing insurance that helps with this. So many people are struggling right now with this down economy. Our family was lucky and my Dad has been able to keep his job and insurance. I have lived and continue to live the great life that I did because of his hard work.

6. College: So many people out there, due to unfortunate circumstances, don't get the privilege of attending college or a university. It has been one of the most rewarding and fun experiences I have ever had. From football games, school pride, rivalry week (aka hate week), dorm life, new friends, parties, studying, the campus atmosphere, finals week, to now having my own apartment. I have been able to get out on my own and live the college life. Growing and making new life long friends in the process.... and of course getting an amazing education to be a special education teacher one day!!

7. The Internet: I know what you are think.... "are you serious right now brianne?!" Just give me a chance to explain. Over the last year I have been introduced, by my sister, to CF websites. Most importantly CysticLife! From there I ended up making a blog. The online CF community is HUGE! It has made life so much easier. They are there to listen when you are frustrated, celebrate with you when something great happens, give advice when you need it and most importantly you are there for them when they need it. I have made so many new friends and I am improving my life thanks to them!

8. Church and Faith: These two go hand in hand, and with out them I don't know where I would be. I was raised in a very religious family and have had such great values and moral instilled into me as a child. I am so grateful to my parents for that. I try my hardest to be a good person, to service others, be honest in everything I do, keep my standards high when the world wants me to lower them. I know when times get hard I am never alone, and that you are never given something you can't handle. God has a plan for me and my goal here on this earth is to work hard in finding out what that plan is. I am also so blessed to have a belief in heaven and that families are forever.

Tuesday, September 21, 2010

Venting: So Frustrated!!

So I go through CF Pharmacy for all my medications but two. However, right now I am so fed up and frustrated with them. As many of you already know my numbers dropped at my last CF clinic and I just started a round of IV's through my new handy dandy port. Well, almost two weeks ago I was feeling pill boxes and going through my medications I had at home and saw it was time to place an order. (I like to order a week or two early just in case of complications or delays so it will get to me before I run out.) Well funny story.... Like 5 DAY after I order the stuff I need I look at the status of the delivery because they had not shown up and it said processing still! I figured I would call after class but when I did call no answer. So the next day they call back saying a payment needs to be made before they can be sent out. So I call my mom, its taken care of no big deal BUT like 4 more days later they call again saying a bunch of the medications actually need refills. By this point I am panicking. I am about to run out of Xopenex, Hyper Sal and a few other things . I call my mom who calls the cf coordinator who says she will take care of it as soon as she gets their fax. She calls today saying she only got 2 of them and is going to call them but by this point I have no more hyper sal. So I am having a hard time breathing cause I am so gunky, That hyper sal makes me cough up alot in the mornings and without it I struggle. I have 2 days left of xopenex, no xyzal so my allergies are freaking out, and my zithromax is out.... I am so angry that this was not all taken care of as soon as I put the order in and not 2 freaking weeks later! Now tomorrow I have to call the doctor and ask if she has samples of stuff. I am on IV's to get better so I need to up the amount of treatments I am doing but how can I do that when I don't have the meds I need! I also have 2 HUGE tests coming up and I feel like poop without them. So it makes studying and concentrating that much harder.

UGH, I just wanna breathe. Is that to much to ask for??

Monday, September 20, 2010

IV's again.... but that doesn't stop me!

So I had a CF clinic last Friday and I was so excited to go in! I had been feeling so tired and coughing ALOT more then normal. So I knew going in my numbers would be down, which of course they were. They dropped from 51% to 44% which isn't a huge drop but if you know me you know that when I get sick I get real sick. So I was started on a few days of steroids and we decided to start IV's on Monday with my new handy dandy PORT! I was so excited that my doctor was going to give me the weekend to enjoy myself and she was going to call my doctors back home in vegas to come up with a master plan on what mix of antibiotics and for how long. So knowing that I had 3 days of care free freedom I used it wisely! I had one of the best weekends I have had in LONG time. It just amazes me how blessed my life is! Friday night we had our football game against CAL, and boy let me tell you most amazing game I have ever been to! Such a huge upset, nobody expected us to win beating a PAC 10 team but we kicked their butt!! After rushing the field we celebrated with some yummy sonic, can't get better then that.

Saturday was cleaning day. I woke up early feeling great with my prednisone working wonders. Later that night was a friends birthday party upstairs. Us girls had a blast! We met lots of new friends, danced the night away, and I had a great heart to heart with another friend. I made sure all my treatments were done before we went cause I knew it'd be a long night and boy was I right! We didn't get to bed till 5 in the morning, but it was totally worth it! Funnest night in forever.

Then Sunday of course was hw but I got an unexpected surprise from a friend and we went out to have hot coco and talk. I had such a great time just hanging out with him. I couldn't of been happier. I always have friends or family comment on how positive and happy I am especially this weekend after hearing about me getting IV's antibiotics started but not letting it get to me at all, and honestly it's not very hard to be that way. I have learned over the years that even if you can't control what happens in your life you control how you act upon it and your own personal attitude. Why waist your time being upset about something you can't control while life passes you by when you can just embrace what is happening and make the very best out of it! Plus what is 2 or 3 weeks of antibiotics when that will give me months of feeling better, more energetic and allow me to breathe easier?! Sounds like a great compromise to me. The only thing I am a little nervous about is doing it all on my own this time. Even though back home I did all my own IV's except the early morning or middle of the night ones it will still be so different not having my mom to fall back on or having her there just as support but I know she is just a phone call away and so is everyone else. I even got an email today from a family friend wishing me luck with school and his concerns when he heard about my IV's and if I needed anything to call. Normally His wife and him bring me Dr.Pepper or ice cream when I am in the hospital or on iv's but his email made my morning. I love my life, and all the people in it. I will have the girls here to help me if I need it and their friendship and caring about me means more then I could ever express. They took on my CF and learned about it like it was there own. Sure having CF sucks and I would have alot more worries and stresses then a normally 19 year old but it has also opened my eyes to such much out there. I have met friends in the CF community that I love, I appreciate every day I have to the fullest, my doctors are more like family, and after years of practice I can find the positive despite what happens in my life.

Monday, September 13, 2010

Making an exercise plan, I think.

So lately it seems that everyone is blogging or talking about exercise and how much it has helped improve their lung function, and I decided it was time for me to get my butt in to shape... better yet my lungs!! For the past year or so my lungs have kinda been on a steady down climb. It is the same routine I get sick, do IV's my pfts pop back up but then a month or so later I start to feel sick again sooooo I figured I should start running and working my lungs out. So far I am thinking about going to the gym about 3 times a week for a couple weeks then maybe step it up a notch. I went today and felt so out of shape. Then my freaking toes cramped up and I couldn't stand on them anymore. Has anyone had that problem??? The gym here at my apartments is really nice. We have a pool to but it's slowly getting to cold to swim much.

Anyways that is the idea I have for getting my lungs back into shape and my numbers where they should be. I am up for any advice or tips that you have. I have never been one to work out so this is all new to me. I'm not ready to be sick and back home and I am not ready to even be at the point of thinking of a lung transplant but my numbers rang between the mid 50's to low 40's and I just want them stable again.

Saturday, September 11, 2010

Reno's Great Hot Air Balloon Races!!

Every September, the weekend after Labor day, the great hot air balloon races come to town. Last year we could see it from our dorms but this year Lorin's mom came to pick us up at 6 in the morning to pick us up for the races!! What an experience. Not gonna lie it was freeeezing but once the sun was out all was good. I had never been so close to an air balloon. Next year we want to go at 5 for Dawn Patrol so we can see the balloons in the air all lighting up "twinkling" in the sky. I love Reno and all there community events. If anyone is near the Reno, Nevada area when this is in town I recommend coming at least once! It's alot of fun.

The first balloons to rise. There represented the twin towns. In one balloon was a member of the armed forces to represent all those who who fight for our county and in the other was a fire chief to honor all emergency personnel.

Then the air guard had 4 plans fly over head and you can see that one broke away to represent all those we have lost at war.

Friday, September 3, 2010

September is my FAVORITE month!

It's officially been decided September is number on my list of favorite months. Yup, it even beat our my birthday and Christmas!! Why, you may ask? Well let me tell you :D So first and for most college football is finally back! Our first game was this last Thursday and I can honestly say I missed it even more then I thought I did, and I already thought I missed it alot! As always the WOLFPACK came out on top with a win against Easter Washington: 49-24!

So now your thinking alright you're in college so college football is exciting but what makes September so great when football goes till December?? Obviously you have never been to Reno,Nevada in September!! Labor Day weekend (this weekend) also means the annual rib fest or rib cook-off (which ever you prefer) is in town Thursday till Monday! Over 300 of the country's best rib vendors are downtown. I had a pulled pork sandwich with sweet and sour and a dash of hot BBQ sauce, funnel cake with strawberry whipcream and powdered sugar and corn on the cob!! OMG it was some of the best food I have ever had. We didn't even get to do everything I wanted to do and I can't wait to go next year to see everything else I missed!

I also got to see my high school government teacher that was in town for the rib fest and we met up with him at the Peppermill and he bought us all gilato. We talked for about an hour. It was a blast! Next on my list of why September is amazing is the annual Reno Balloon Races. Hundreds of hot air balloons come to town and for 3 days light up around 5 in the morning at the park up the street from the school and float around the sky. Last year us girls tried pulling an all nighter the night before and missed it but this year we are going to be there for dawn watch which is the most beautiful time to see the balloons light up! Exciting, I know!! but that isn't the last of it. There is also the street vibrations where bikers and old cars come to down town and show off their stuff. My Uncle Ted comes to town every year for this and this year I get to ride around Tahoe on his bike with him! Then of course one of the best parts of September in Reno is the weather. Man how I love the start of fall. By the end of the month the days of absolutely perfect and the evenings you need a sweater. You can feel winter in the air trying to creep in but you know you still have about a month till the first storm blows in and we have to break out our winter coats.

So there you have it. That is why September happens to be my favorite month of all!

Thursday, September 2, 2010

Happy (early) Birthday Skye!!

Lets start from the beginning. My sister and I were looking online for some cute CF awareness bracelets. That is when I first ran across this amazing blog. After looking at the bracelets I began looking around the blog, I was thinking to myself, "This is the cutest little girl I have ever seen and she looks just dang happy even through everything that is going on." So I decided to follow her and her mom's blog. From there I become facebook friends with her mom and now I feel as I have known them forever. The poor little girl not only has CF and a few other complications caused by that but she was diagnosed last week with a hearing problem to. So for her birthday party that is this friday in RI I made a "Happy Birthday" song video for her.

Little Skye is turning two years old and is the cutest little girl I have ever seen! Seeing the pictures her Mom puts up always make my day. Of course She would be no where if it wasn't for her amazing Mom and Dad. I don't know how her mom does it but she always finds away to make it to tomorrow and to make the best out of every situation possible. I so look up to her for that. She is such an amazing Mommy to little warrior Skye and I am so grateful for the CF community we have that allowed me to meet and become friends with this amazing family. Skye's mommy keeps a pretty up to date blog about their daily lives. If you are interested in hearing Skye's story or if you would like to see the cute cf bracelets or key chains that her Mommy makes here is the blog: http://teamskyesthelimit.blogspot.com I hope Skye has a great birthday and I wish I could be there!