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Showing posts from June, 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, d…

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 …

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 li…

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. …

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…

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&#…

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 with…

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. There…

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". M…

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 …

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 …