Friday, April 22, 2011

What makes a hero?

What makes a hero and who are my hero's? Is it someones good looks and charm, maybe their achievements, determination, or optimism? According to a hero is:

1. A man of distinguished courage or ability, admired for his brave deeds and noble qualities. 4. a being of godlike prowess and beneficence who came to be honored as a divinity. b a warrior of special strength, courage, or ability.

To me there isn't a group of specific qualities that a person has that makes them my hero. There are many people I look up to and strive to be like. My best friend in high school, who moved around every few years, because her father serves in the AF. She showed me first hand the importance of family. She showed me I was worth something, and that a negative attitude toward things you can't control aren't worth it, find the positive in it. Then there are people like my Mom with her HUGE heart, and willingness to care for others in need before herself. My Dad's hard work and determination to provide everything he can for his family. My Uncle Kish who lives to provide for his family, and gives to others even when he doesn't have much for himself. My Aunt Spring who has always been there for me or anyone else in her family when we needed help. My little brother for working hard and never gives up even with the struggles and set backs he has, and of course my little sister for never letting CF stop her from accomplishing her goals. I could go on naming many more family members that have qualities I wish to have one day. My Grandparents did an amazing job raising a family who cares more for others then their selves and are willing to give, whether it's groceries for a sibling who can't afford them, filling up someones gas tank, everyone helping redo or move into a house. I look up to everyone of them in hopes that one day I can be like that, but does that make them a hero?

For me the first name that pops into my head when I think hero is my Cousin Jason. He passed away 14 years ago after fighting a very long and hard battle of cancer. I was only 7 when he passed, and many of my memories of him are stories I've heard. There are a few things I do remember though, and over the years I've found myself thinking of him and looking up to him more and more. One of my fondest memory of Jason was at his home. Hospice had set him all up there so he didn't have to be in hospitals anymore. We went over to visit, and I remember him wanting to build a puzzle with me. We sat there building a puzzle and joking around. Every time I saw him he was all smiles. Sick, swollen, and hooked up to meds, but he was happy. I don't know why that is the most vivid of my memories, but I'm glad it is. It's something I think about when I am sick, swollen and hooked up to my own meds. I also remember the day he passed very well. I had been taken out of school early and the entire family was at his home to comfort one another. His last moments were touching ones, and after they took him away is when I realized he wasn't coming back, I cried and cried. Jason had a way of bringing, our already strong, family together and even stronger. Jason has always been with us as we've grown up. He had a shelf at Grandma and Grandpa's house, and pictures all over my Aunt Landa's. One of my aunt's eat's thanksgiving dinner with him and stories are told. At the 10 year mark of his passing we held a "celebration of his life" were we all wore Rancho xc shirts, cause he loved to run and was the best in the state, green chucks, his favorite shoe, and of course we had enchiladas his favorite food. After eating we watched a video my uncle put together of all the picture we had of him with the family, and gave my aunt and uncle a present. It was a very sad day, but it was also fun remembering all the silly things he did and spending time with the most important thing, family! Not only do I look up to Jason for his strength when he was sick, I look up to him for his faith in our Lord and the trust he had in our Father. He had such a strong testimony and I am very blessed to have a copy of his testimony to read when times are hard, because if he could be that strong when things seemed near impossible and his time was coming to a close, I could be strong during my trials as well. I know if Jason were still here he would visit me in the hospital and tell me that everything, no matter what, will be okay, and I know for a fact he would give me a hard time about not going to institute and church every week. He left me with such a great strong example. He battled such a mean cancer for so long and left us way to early, but he had a mission to serve in heaven. I'm glad I have the memories I do, and his example to look up to until I get to see him again.

Wednesday, April 20, 2011

For once good news at a clinic!

I had a CF clinic appointment Wednesday, and it went really well! I blew a 50% which is up from 32 when I was admitted to the hospital at the beginning of March. My oxygen sats are even setting at 95%. The doctor was very excited about my numbers. My lungs have felt a bit tight so the doctor listened and I had a small wheeze. So I am being put on a steroid inhaler to keep my asthma under control and out of my way! I even gained back all the weight I lost when I was real sick. 109 lbs and pretty happy lungs. Now I need to start working out so I can try and get my numbers to the mid 50's where I want them. I'm thinking about doing maybe some pulmonary therapy, but that is a conversation I have yet to have with my doctor. If any has opinion or expericnces about pulmonary therapy please feel free to share!

After that appointment was my ID doctor who had put me on the antibiotics originally. First off let me just say he is not my favorite person and I had only seen him once! My mom and I agree he should retire. The poor guy stresses me out. At teh appointment he forgot what he put me on and that he put me on that ALL together! but he thought I sounded good and so I got the ok to stop the meds. He said he would call critical care and let them know they care dc me. Well guess what?! He never did, critical care has tried contacting him twice and nothing. So I decided to just de-access myself. I had never done it but I had been taught. It feels nice to let my poor skin breathe! At this appointment he also forgot he ordered x-rays. After we reminded him he looked at the report he was given and it said they saw evidence or suspected (I can't remember exactly what it said ) of a pulmonary nodule. Thank goodness for CysticLife cause google scared the crap out of me with what it could be! So far every has said it was an isolated infection that was treatable and gone. So we are picking up the xrays and I am going to try and find a way to get in to see my CF doctor not on a clinic day, the poor man is always so busy and booked, so we can figure out what it is and what we are going to do.

For now I am not going to worry about that. I am going to enjoy life without IV's. Lately it seems to not last long so right now I'm living it up!

Thursday, April 14, 2011

why hello blog, is it time for an update?

I think it is!! So last you heard I was in the dilemma of school in Reno, doctors in vegas and being really sick. Well those problems are 98% fixed!

1. I am officially living back in vegas with my parents, and have transferred down to UNLV to finish school. I would much rather be an alum of Nevada, and go to the Alumni BBQ's before football games, and graduate in the beautiful quad, and have wolfie be my mascot instead of some creepy guy with a mustache, but even if I'm ready to go back to Reno my senior year I'd have at least 3 classes that I know of that are required to graduate from there that aren't at UNLV leaving me with LOTS of summer school playing catch up on core classes. Being home is nice though. I love being with my family, I miss them so much while I am gone. Plus my Mom can use the extra hand around the house and while I'm not in school I can give her that. Not going to lie, leaving Reno and my friends was one of the hardest things I have ever had to do. I have maybe 2 friends in vegas not counting family, where in Reno I had a whole group of close friends that I had a blast being with. 4 months and I can start school, join some clubs, go to institute to help make some friends to get me through till I can move back to Reno to be a teacher. But for now I need to get my health stable. I am sick of always being sick. We need to get my lungs in a better place and living at home with the help of my Mom relieves alot of my stress which helps with the healing process while I am sick, so as hard as the decision was to make I know it's the right one!

2. I have officially medically withdrawn from this semester and I was granted a 100% refund so instead of "W" being on my transcript it's like the semester never happened. Now I wait to hear from UNLV and once I am in I can met with an adviser and get things all set up! For now I am taking some science classes over the summer to play make up for this last semester I couldn't finish. Withdrawing was a HUGE decision but after my dang lungs made me miss a month of school, and midterms, I had no option. The DRC at Nevada and my social worker were so much help and so supportive. They listened when I cried, and let me know how proud of me they were and that I wasn't a failure. It was such a great support to have during that month.

3. My health.... I am feeling better but not better better. Any CFer out there knows what I mean. I have a CF clinic next week and I see my ID doctor the same day. Not gonna lie I'm scared to see my PFT numbers. After 3 weeks on IV's I am normally feeling loads better then this, but something just feels off in my lungs. I mean I can walk around the block now and not be totally winded and I can breathe without 5 treatments a day but something still isn't right. If this wind would stop I want to start running. I will work my lungs hard and do everything I can for the next week and see where I'm at, and what the game plan is.

**Over all life is pretty great. Sure there are bumps in the road, or in my case this last month giant speed bumps in my way, but there is always something that can counter act those bads. I have been so blessed with amazing doctors, social workers, support at the DRC, the most amazing supportive friends, and the best family a girl could ask for. My withdraw was approved and I am getting a refund so I can pay for summer classes with that and I can help my parents money wise like putting gas in the car and what not. There is always an upside to the down, and as soon as you find those it makes everything that much better. Don't waste your time being upset. Get a good cry out, go for a run, yell if you have to. Don't bottle up the anger, frustration or disappointment. I know I don't, we're only human, but after that good cry, yelling at nothing, a run or whatever it is you need to do find that good in your life and focus on it. Tell yourself it's going to get better, lets sit down and figure this out. It might takes you 30 seconds, an hour, maybe a few weeks till you can get past the feelings enough to find the good, but once you do you'll be glad you did, trust me on this one! Life is always better with a smile.

My sister and I at her HS powder puff game earlier this week.
I love being back with her!