Saturday, June 30, 2012

Alaska

Wow. What an amazing trip. I'm still in awe of all I experienced last week.

I just got home from a 7 day Alaskan cruise with 16 of my family members--including my immediate family and grandparents, aunts, uncles, and cousins. My family has been extremely unique but very blessed in the fact that my grandparents love taking all of us on group vacations. I've seen places around the US that I would have never seen if my grandparents hadn't cared so much about traveling, and Alaska is no exception. We took a cruise out of Seattle, stopping in Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria, British Colombia. We escaped the Texas heat and went into rainy/cloudy/windy conditions. Even with the clouds, though, Alaska was breathtakingly beautiful.

But let me back up. The cruise ship itself was 9 decks, with a gym, two pools, lots of walking space, a theater, a two-story dining hall, and a huge buffet area. Cruise ships are known for the amazing service they provide, and boy, did they live up to expectations! The cabin boys kept the room very neat and clean. Our assigned servers in the dining hall knew our names after the first time we introduced ourselves. The singers and dancers were all very impressive, even on a rocking ship. And the cruise director was full of energy and made everyone excited about life!

In Juneau, my family went zip lining through the forest. Alaska is so green! Our guides told us that Alaska gets as much rain as the Amazon rainforest. (I believe it!) Going over the tops of trees and over old mine fields was absolutely outstanding. And, I always remembered to brake but I never got stuck on the lines, woo!

Glacier Bay was unlike anything I've ever seen. The glaciers were so defined and blue. We got to see the glacier calve several times. The sound after it calved was like a gunshot. It was so loud! Watching the large chunks of ice fall into the cold bay was incredible, too.

In Sitka, my whole family went on a sea otter and wildlife excursion. I was blown away by the amount of wildlife we saw--about 100 eagles, several whales, many clumps of sea otters, and a couple of sea lions. How astounding that this wildlife is "normal" for Alaska!

In Ketchikan, we went on a float plane into the Misty Fjords. I can't even begin to describe the beauty. I couldn't take my eyes off the mountains, valleys, glaciers, and huge bodies of water. Although it was a bit cloudy, I still was breathless by the majesty of the Fjords.

We walked around in Victoria, enjoying the sights and sounds of a new city and a new country. In Seattle, we visited Pike's Place, the Space Needle, and the Experience Music Project.

There is nothing like an Alaskan cruise. I can honestly say this is one of the most unique vacations I've been on. I enjoyed every second of it, but it definitely feels good to be home. Like Dorothy says, there's no place like home!

Friday, June 22, 2012

You'll Never Walk Alone

A year ago today, my band director, Bruce Dinkins, died suddenly. I vividly remember getting the phone call, being in total and complete shock at the news. I remember the funeral, listening to the music he so loved fill the halls and seeing all the students he impacted crying salty tears. His death was a shock to everyone, and I still think it's weird that I can't go up to my old band hall and strike up a conversation with him about life.

I am forever changed thanks to the many lessons Mr. Dinkins taught me. He had many quirky sayings he would say, like"Why walk when you can run?" Although hearing this saying got old really fast, and I wanted to walk back to my spot on the marching field because I was so tired, I learned perseverance and dedication. He wanted to convey that we should always give our best to everything and never waste a second. I have been able to take these skills into every aspect of my life, not just marching band. Another Dinkinism was, "The capital of Texas is Austin." He said this to imply that you shouldn't have to be told the same basic information over and over and over again, like telling people who live in Austin that the city is Texas' capital. He would say "Use your B-R-A-N-E", telling us to always think clearly and properly, not just trusting what others say but actually processing information. The most important lesson Mr. Dinkins taught me, however, was the importance of confidence in myself. He believed in my abilities and had a keen ability to see my potential, even when I struggled to see it in myself. I became a better leader thanks to his direction and advice. I grew confident in my gifts and abilities and continue to grow and mature. I have been so blessed by knowing Mr. Dinkins.

"To all those who enter, you are subject to the relentless, refining process of music of music through uncompromising standards."

Thursday, June 21, 2012

Deaccessed

Freedom! I get deaccessed today!! I'm pretty much jumping up and down for joy. Who would have thought removing a .5 inch 20 gauge needle from a person would evoke such contentment?

I have now completed my unexpected two week course of IVs. Have you ever felt that time moved so slowly, you don't remember everything that took place within that time? That's kind of how I feel about these past two weeks. I feel like I've been on IVs for a good month at least. The hospital stay itself feels like it was ages ago. My perception of time is completely thrown off!

These IVs have been both a blessing and a curse. A blessing, obviously from the fact that I have energy now and a sense of breathing back. A curse, because for the past two weeks, I have had a piece of heavy duty IV 3000 tape slapped on my chest to cover my port, and my stomach has gotten somewhat messed up from the medications. I'm not going to complain--these IVs are what keep me alive and fighting! When you live with a chronic disease, you always have to weigh the positives and negatives of treatment, with a balanced quality of life being key. Getting rid of CF right now is not the goal (simply because a cure has not been found at this time). The goal is learning to live with CF, balancing my therapies and treatments with having a semi-normal life as I'm growing and maturing into a young woman.

That being said, I am grateful for IVs, but I am so flipping excited to finally be off of these medications!

Here's my last dose of one of my IVs. I'm thrilled to see this straight cylinder!

Wednesday, June 20, 2012

Service

"Do what you can, with what you have, where you are." Teddy Roosevelt

I desire to be a servant to other people. I find joy in helping others, pouring my time and my work into their lives. To me, nothing is better than being a servant! That's simply the way God wired me.

Teddy Roosevelt's quote strikes a familiar chord in my life. He begins my saying, "Do what you can". I often get too caught up in trying to do everything for people that I forget that I simply can't do everything! I am only one person, with certain qualities and characteristics that make me able to serve others in a very specific way. For example, I can't lift heavy furniture for a friend who is moving and recently hurt their back (that's just a made-up scenario, by the way). I am physically incapable of doing that, weighing as little as I do. However, I can organize a group to go over and help the friend move. I can help unpack boxes or move smaller ones elsewhere. There are other ways I can serve without overexerting myself in the process or getting frustrated with what I can't do.

Roosevelt then says, "with what you have." I was made with an able body, two arms, two legs, good eye sight (with contacts), and some pretty cool personality traits. God has fitted me to serve others with the gifts He has blessed me with. I don't need to go searching for something special, thinking I can't serve others if I don't have (insert object here). I can help others by being me, with everything that I have right now. I don't need to wait on anything but can just get busy serving!

Finally, Roosevelt closes by saying, "where you are." This is important because it focuses on the community aspect of service. I don't need to travel to a far away land in order to give of myself. My focus should be on building up my community, which includes my friends, family, neighbors, classmates, church family, and, honestly, people I don't like, as well. If I had the attitude that I can only serve when I'm away from people I know, what good would that do in showing God's love and being His hands and feet? We are called to live like Jesus wherever we are. He is the ultimate server, and my desire is to look like Him. Therefore, I will serve wherever life takes me.

Sometimes I forget that I can serve in many different capacities, with the gifts God has given me, right where I am today. My prayer is that as my life in Christ grows and develops, I can learn to serve others like Jesus, to the glory of God.

Monday, June 18, 2012

Friendships

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival." C.S. Lewis

What would this world be without friendships? My close friendships have given me such life and encouragement, blessing me with hope and love when I needed it most. I've seen God's work through my friends, with them being His hands and feet to me in my deepest times of need. I can talk to my close friends about anything, let my true self shine through, take off any masks I put up to the world.

The beautiful thing about friendship, though, is that it involves a give and take relationship. I don't only receive goodness and hope from my friends; I give love and care and acceptance to them, as well. I give my friends my ears to listen to their hurts, my words to encourage them, my prayers to lift their burdens to the only One who can carry them. I give my time, my word, and my trust (one of the hardest things for me to do) to them. As friendships grow closer, I allow that person to understand my thoughts, feelings, emotions, and concerns, just as that friend learns to trust me. Friendships allow humans to be completely open and honest. How refreshing is that?! In a world so focused on outward beauty, salary, and materialistic goods, having true, intimate friendships frees people from the weight of the world. 

So back to my original question: what would this world be without friendships? Yes, we could survive. Relationships are not vital to acquiring food, clothing, water, and shelter.  We could live in isolation, not forming the deep bonds essential to a growing friendship. However, friendship breathes breath into our very lives! It adds excitement, creating unimaginable adventures and exhilarating thrills that make life feel valuable and unique. I would not be the person I am today without my close friends. They have made my life wonderfully entertaining and uplifting, and I look forward to seeing where God takes these friendships in the future!

Thursday, June 14, 2012

Thankful Thursday

1. Puzzle time- My mom, sister and I have worked three puzzles over the last four days. We are just puzzle masters! :) I've loved having this time with my family to sit down and accomplish a goal. Honestly, we aren't even talking half the time because we are so focused on working the puzzle, but that's totally fine. For me, quality time doesn't always have to involve constant conversation; the silence is sometimes just as beautiful. Granted, none of the puzzles we have worked have been incredibly difficult (they've all been 500-piece puzzles), but we're working our way up into the more difficult ones.

2. Work- I have truly enjoyed work these past couple of weeks. My volunteering at a speech-pathology clinic confirms to me that I want to be a speech-pathologist. I want to help people regain or learn communication skills, building from the ground up. I want to take on that challenge! I know with speech-pathology, no two cases are exactly identical. I think that's so cool and a perfect occupation for me! I cannot wait to learn more about speech-pathology as I continue my schooling.

3. Zofran- If you've ever been nauseous and taken Zofran, you know what a great medicine this is. Zofran is an anti-nausea medication and has been pretty effective in controlling my issues with IV medications. Although it doesn't get rid of my nausea completely, it does significantly reduce the lovely side effects of the IV medicines. I do not know what I would do without Zofran these last few hospitalizations. Thank you, drug companies that made it!!

Tuesday, June 12, 2012

Lost the battle

Today, Leslie lost her battle to Cystic Fibrosis after attempting to receive a double-lung transplant. Leslie was a family friend who grew up three houses down the street from my mom and was closely connected to both my mom's and dad's families. She battled for her life for 51 years and exceeded expectations of a normal CF life expectancy for a girl born in the 1960s.

I never knew Leslie, thanks to cross contamination issues (CF patients really shouldn't be in close contact with others because we can pass bacteria easily from one CFer to another). However, even with my limited knowledge about her, I looked up to her so much. When the doctors and nurses told me that a normal CF life expectancy was in the mid 30s, I felt comforted that Leslie continued to live a vibrant life. It's one thing to be told that you can live with CF, conquering the challenges it constantly presents. It's another thing to really know that anything is possible, including living with CF without limitations. I knew I could fight CF because Leslie was fighting alongside me. It sounds kind of silly, but Leslie's long battle gave me strength to fight my CF.

My aunt posted this facebook status as a tribute to Leslie's life. "Praying for the family of Leslie who lost her battle with Cystic Fibrosis today. Praying for God's peace and comfort as you mourn and move on with life. Leslie was a great warrior who knew how to LIVE!" Please pray with me for Leslie's family and friends as they mourn her loss after a valiant fight with CF. And even amid the heartache, know that Leslie is now joyously praising her Lord and Savior.


We need to fight against CF so that people do not have to experience the death of a loved one to such an awful disease, like Leslie's friends and family. I cannot wait for the day to be free from CF!! I'm praying for a cure to come quickly, and I hope you are, as well.

Monday, June 11, 2012

Update

I am out of the hospital and slowly but surely regaining my strength. Unfortunately, I'm pretty nauseous from the IV medicines. I used to pride myself on my stomach of steel, but somehow I've lost that old stomach! IVs now tend to leave me feeling unsettled and, well, just blah. I can also smell everything that gets flushed into my port. Don't ask me what it smells like because I can't describe it. It smells like IV medicine! My super-sensitive senses don't help the nausea, but it's all part of the disease.

We are still not sure what caused the fever and low blood pressure that landed me in the hospital originally, but right now, I'm focusing on getting well! The doctors think it was simply the "perfect storm," thanks to a new medicine that dried me out, a virus, dehydration from spending time outside, and a CF exacerbation. Because I've lost a lot of weight over the year, I seem to be getting dehydrated a lot easier than I already did. Therefore, the rest of the summer, I will be salting my foods, taking extra precautions, and drinking lots of Gatorade! As well, hopefully these IV meds will help me start feeling stronger and healthier very soon.

Friday, June 8, 2012

Thankful day

This week has not been one of the greatest, obviously. I was not expecting to land in the hospital or feel really sick. However, I still have things to be thankful for (like, for example, every breath I take!) Life is full of ups an downs, but God still provides me with relationships and aspects of my life to be grateful for.

1. Exercise bike in my room- as a CFer, I get special "perks" while in the hospital. For example, I get an exercise bike in my room. Most patients have to walk around with physical therapy so they don't get bed sores, and, although I enjoy walking, I like exercising at my own pace on my own time. With the exercise bike, I can hop on and pedal away whenever I please.

2. Support system- I have said this before, but I have the best family and friends. They are such a tangible way for me to feel God's love for me and His amazing care. My friends and family are always willing to pray for me, both when I'm sick and when I'm "well". My mom stays with me when I'm at the hospital, sticking up for me and making sure I get the best care possible. My dad is willing to do anything he can to help us out. My siblings never fail to make me smile, even on the worst of occasions. And my friends continually text, Facebook, and email encouraging words and prayers. I am forever grateful.

3. A real shower- When I receive IV antibiotics, I am accessed to my port, meaning I have a needle in my skin and tape covering the accessed area. Once a week, I have to be reaccessed so that I don't get an infection. I get to take the old needle and tape off my skin and have a little bit of time free from tape. I love getting to take an actual shower without having to worry about getting the site wet. Oh, the little joys!

Thursday, June 7, 2012

Going on a Rant

I despise hospital stays. A lot. If you've ever been admitted before, you know hospitals are nothing like they portray them on TV.

But you're supposed to rest while in the hospital! Yeah, right. Between the bed constantly moving, the nurse coming in every couple of hours, and the screeching IV machine, I wouldn't say you get the most restful night's sleep while on "hospital vacation".

But you're supposed to get really good therapy treatments while in the hospital! Mmmhmm, well I do treatments every day 3 times a day. I think I know what I'm doing without any help from anyone, thank you very much. I don't need to be told that I shouldn't eat ice cream or yogurt because it increases mucus, either. I'm a CFer, I'm going to have mucus. Plus, you're not a dietician. I think I will decline taking your advice. And when therapists stare at me like I'm a creature from another planet, that's really comforting.

But the equipment in the room is supposed to be top notch! Oh, you think so? Well, I think I just took my temperature with the hospital's thermometer and then with mine. Guess what? The hospital thermometer got me at 98.3, and my thermometer got me at 100.6. Oh yeah, that's reliable.

I ended up in the hospital yesterday because I had a fever, extremely low blood pressure (77/57), and heart issues. They thought I was dehydrated, and when my temp was "up" today, they thought I was clear to go home tomorrow. However, I feel pretty awful right now (headache, chills, increased cough). Had I not brought my own thermometer, they would have sent me home tomorrow, assuming all was well. I don't trust the hospital anymore. Who knows what else of the equipment is jacked up? I'm even basically making my own orders right now for a chest X-Ray and sputum culture, considering the docs aren't being helpful. Honestly, I just want to get out of here!!! And when mess like this happens, I get really perturbed. This would be reason number 1,323 why I almost always do IVs at home. I minimize time here in this lovely facility as much as possible.

I apologize for my ranting. I'm just trying to be as open and honest as possible, and right now, I'm just frustrated! Things will turn around, I know, I just would appreciate prayers for patience right about now!

Monday, June 4, 2012

Optimism

Op-ti-mism (op-tuh-miz-uhm). noun. --a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome.
Synonyms- confidence, hopefulness, cheerfulness
Antonyms- pessimism, cynicism

I like to think of myself as an optimistic realist. I always try to be optimistic, exuding confidence, hope and cheer to everyone who comes in contact with me. Studies show that optimistic people live healthier, happier lives than cynical, pessimistic people. However, I choose to be optimistic for different reasons; I know that optimism is key to living with CF.

You see, to me, optimism isn't having an unrealistic expectation that life will always be perfect. I'd be a fool if I said it was. I've experienced hospitalizations, surgeries, and therapies that I'm not even going to try to explain. I've been "sick" since birth, never really getting a break from CF. And you know what, I'm not going to lie, it's crud sometimes. Instead of being down all the time or always expecting the worst, however, I strive to see the good in life and not throw a pity party. In my opinion, when life throws a curve ball, I have two options: get stuck in my own misery about how unfair the situation seems or take life as it comes, trusting God in everything and knowing that eventually I will be in Heaven where "He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." (Revelation 21:4 ESV)

To me, the second option listed is always better than the first. If I pouted every time CF got me down, I would always be a depressed, lonely young adult. Seriously, who wants to be around someone like that? Although I don't recommend suppressing emotions, I know I can't take every hit thrown to me by CF and complain about it mercilessly.

I will leave you with a quote from a fellow CFer and this final thought. Optimistic realism is so vitally important to good health. Never remain lost in your own bad situation that you lose sight of the beauty of life.

"Life always throws curve balls. At least with CF we know what the next pitch is. Use that knowledge to your advantage. Take your best swing!" Dave Davidson, CF patient