Memorial Day Weekend

 Early Thursday morning, we packed into the van--that was, to be exact, my mom, step-mom, Josh, Brandon, and I. Alicia had flown down from Pennsylvania and my dad had driven down earlier with one of my uncles to be with the family earlier. It was another long drive to Southern Arizona, and luckily it went by quicker than it usually does.

We were able to hang out with our cousins before our Grandma's funeral the next morning. Luckily I was able to handle this funeral better with a feeling of peace after her passing. While having other loved ones live on, my testimony on the Plan of Happiness has grown. It's comforting to know I will see my Grandma Roy again, and that she is healthy and happy right now. She has been an incredible example in my life and I miss her. At her funeral, we were reminded of how she would scream at the Tv while watching sports, how she gave into Uncle Jim's "insight" on how "when you shake up the orange soda can, it mixes up the flavor better," how she had 12 temples on speed dial in case anyone needed help, and of her incredible, unshaking faith, even during times of uncertainty and difficulty. I wish I had a picture to post on here of her, but I haven't been able to scan any from home.

Friday was emotionally draining, and I even fell asleep with the music blasting in Caryn's car on the way home from one of our uncle's that night. Saturday was much better. We slept in, went to Cici's pizza, had a Bbq with the family, and then headed over an upscale mall to window shop. It was great fun! We stopped over at one of my favorite stores in Arizona, Charming Charlie's, where we took some take classy pictures.

Carly: "I'm in a tent!"

crown? Nah, it's just a necklace, but we figured it might as well be a crown

Quick funny story: I don't often share what my dream wedding will be like, and I know I'll never have a dream wedding cake like this and I'm ok with that, but we walked past a cake shop at the mall, and in the window were 3 cakes. I gasped and said, "ah I love it! It's my dream wedding cake!" Then Caryn pointed and said, "That one?"

She was only kidding haha. But I'll admit I thought it was funny. This was the one right next to it:

It was gorgeous, but I wouldn't be surprised if it cost thousands.

And third one they had one that looked like a purse. The cakes there reminded me of ones you would see on Cake Boss.

After we got home from the mall, we went to Wallmart and bought more Blue Bell ice cream, aka a piece of heaven in a carton. I believe that during the whole weekend while I was there, I ate about a 1/4 or a 1/2 of one. I even started finishing up (my favorite) the Banana Pudding ice cream straight from the carton with a spoon.

Best. Ice cream. EVER!

It was a short trip but I enjoyed spending time with family. Now that our Grandma has lived on, we have taken an oath to carry on her legacy and live by her example.

We drove home Sunday, so then I was here in Provo with nothing to do on Memorial Day while my roommate had to go to work. Surprisingly, I was able to get a lot done--go running, clean the apartment, start organizing activities for my calling in the RS presidency, and more. Then, later that afternoon, I was able to go to the hot springs with some friends. We bought Cafe Rio and ate it on a bridge, then hiked up for an hour up to the hot springs. They were beautiful and I never would have known that nature has its own jacuzzies like the few we visited. We got mud all over us from hopping out of one hot spring location and hiking to the next barefoot, but it was so much fun!

beautiful

I thought it was sweet how he carried her a lot of places with her broken ankle (it broke several weeks ago), so I took a candid

hot springs!

my friend Chelsea came with her broken ankle. What a champ!

After the hot springs, we made our hour long hike back down in the dark. We had glow sticks, but since there were a lot of people going up when we were going down, I think whoever goes up at night is nuts. Overall, it was a busy and eventful weekend that I won't forget.

Sweeter than Sugar

Hey I almost forgot! I started a cooking blog a little while ago that anyone can follow. I usually post easy recipes. So far there are more chicken recipes, such as Winger's sticky fingers, chicken and spinach stromboli, and sweet and sour chicken, but I will be posting a whole bunch of things that I try out and love. There are also a few breakfast foods and baked goods posted right now. I will post more recipes with different meats, vegetables, and fruit. There will be salads, soups, other dishes and extras, including my mom's steak marinade that I use. It's a work in progress, but feel free to check it out!

 Sweeter than Sugar
http://sweeterthansugarkitchen.blogspot.com/

Don't Worry, Be Happy :)

How can I even express my gratitude for what happened today? It seems impossible.
I hardly ever cry from pure happiness, but I did this morning.

Once again, just like how I did last summer, I received an email stating I had a new message in my Byu financial center. I was thinking "Well, I hope it's not another fee that I need to pay." But if it was, I knew there was not much I could do about it but pay it off, so I decided that I might as well sign into my school financial account to read the message.

There was the title: Dean of Students Enriched Environment Scholarship

I opened up the message and stared at it. It couldn't be. It absolutely couldn't be.

Dear Rachel, The Dean of Students is pleased to grant you an Enriched Environment Scholarship  as detailed below: Then the amount was listed for both semesters--full tuition. I continued staring, until I burst into tears. Let me tell you, I usually don't find myself crying over pure joy. One of my first thoughts was, How? The notice for the scholarship last year pretty much said it was a one-time deal only for that year. After the school year, the office wanted me to email them, explaining how my scholarship helped me during the school year, my experiences at Byu, lessons I have learned, and my current standing academically and financially. I was honest with everything, explaining how this last year has been very challenging academically, emotionally, physically,  socially, and financially, but how my experiences have strengthened me spiritually, making the year a wonderful experience and I wouldn't trade any of it for anything. The email explained that the scholarship is usually a one-time deal, and that my explanation would help them determine which students would receive the same scholarship for next year, and I was more than happy to help. However, I did not expect at all my response to let them change their mind about this scholarship being one-time deal. With all this in mind, I am so glad to hear I can go to school again next year. My prayers were answered. The load of worry about how to pay for everything, at  least for now, has been lifted. This upcoming school year, I am going to try to raise my Gpa a little more and gain more experience to be more eligible for private and school scholarships later down the road. After seeing and being exposed to people getting into serious debt, and I know that student loans are often considered "ok" or "an emergency," I am going to avoid it at all costs for as long as possible until I reach graduate school. In addition, I'm alright now that my disability income case was terminated. I'm fine with working a little to save up, but now I feel relieved that if I can receive financial aid, I can now pay for both tuition and rent. I still feel inadequate for receiving this scholarship from the Dean of Students, a job from them, and then the scholarship once more. I'm not bragging, but am trying to bring up a point in one of my favorite scriptures: Alma 26:12. As we live with faith and rely on the Lord's strength, even whenall seems as if it's about to crash, there is hope in each day and in the future.

New Treatment plan

After my clinic visit yesterday, seeing my PFTs slightly dropped, I knew I needed a new treatment plan, especially keeping up with cardio exercise. I read about a similar treatment plan from another CF patient, so I decided I am going to try this out:

Wake up (still figuring out best time) sometime around 6:45
Put in contacts/slightly get ready and put on running outfit
Eat a small amount of food for energy
Take albuterol
Run for 30 minutes, stretch, then a little bit of core strengthening
Finish treatment with Hypertonic Saline, Pulmozyme, (and Tobi when needed.)
Not forgetting the "huffs" in between each medication :)

I tried this plan this morning. As expected, the Albuterol seemed to open up my airways for an easier run (p.s., did you know that sometimes people give race horses Albuterol to open their lungs before they race?), the run opened up my airways even more, then the Hypertonic Saline and Pulmozyme moved the gunk around a lot more to be easier to cough up. Let me tell you, this feels amazing!! I believe it's the best natural high in the morning! I believe it will do much more than just sitting, taking med after med. To be honest, I don't think I'll always have time to complete this full treatment plan with the run in-between, but I'm going to try to do this at least several mornings a week. I now have to face the fact that another part of becoming an adult is that exercise is not just a "good option," but a necessity.

Other Aspects of Being an Adult

Lately I have discovered some more tid-bits of what it's like becoming an adult. I don't know how my mom has had the patience with me as she has been teaching me so much about responsibilities that come as you grow older.

Last week, once again, I was feeling a little worried about how to pay for college. My dad had come up to me, reminding that I owe him the $450 that he lent to pay for rent, food, and more. Hopefully, I will receive a pell grant for tuition next year, but I was also wondering how to pay for rent. After I got home, my mom opened the mail. As soon as she read the letter from SSI, stating that my disability benefits were about to be terminated, I about broke down, fighting tears. How in the world was I supposed to pay for tuition and rent next year? Especially when being denied all scholarships for a lower Gpa? I was also reminded of a surgery that might need to take place soon to remove scar tissue from closing up my G-tube site. I then thought "Ok, if I have to work and go to school, then that's alright. The more work experience, the better; there's nothing wrong with more work experience." However, a few days later, I had a feeling to go to a CF blog, then questions asked by other CF patients. And there it was--a category talking all about SSI! I clicked in a jiffy, and surely enough, other patients were out there as well taking place in cyber conversations, wondering what to do once their disability benefits were terminated. They were wondering how in the world they could go to school, work, and take care of their health. The other patients were telling stories of how once they tried to balance work and school and health responsibilities, their health went down the tube, and they ended up in the hospital more often for tune-ups. I then realized it would be very tough to balance school, studying, work, and keeping up with my health. Below in the comments sections of the questions regarding SSI, they even had a number for an attorney that works specifically with CF patients.

Today my mom and I called her, SSI, and many other numbers to appeal this case. If I were able to work full-time, I would be uneligible for disability. As of now, it would be impossible to work full-time. As we spoke with the Cf attorney, she asked about my daily health regimen. We calculated my treatment time total, which included the nebs and vest, cleaning the neb pieces, exercise, and cooking to eat healthily, as it all came down to about 4 to 5 1/2 hours a day. So now we are in the process of waiting to hear how the appeal pulls through and if I keep the benefits (which the attorney said I am still eligible for them while still being on Tobi for pseudomonas and the hours put in each day for my health). If not, then it comes to possibly taking a semester off to earn money or trying to balance work, school, and health. Come to think of it, I even had a feeling that taking a semester off may be a good way to have time to remove the scar tissue from my g-tube removal that has caused some digestion trouble and cramping for a while now. After all, having all this take place could be a hidden tender mercy, and I don't know what is in store. To whoever is reading this is very patient with my rambling, I thought about how burdens and changes of plans may be tender mercies in disguise.

For a while, my future has seemed vague in many ways. Trying to earn an education, pay for it with my parents unable to help at all, and not sure how everything would play out can be difficult. I look forward to the day where I'm able to not rely on government money. Right now I am working a part-time job to gain experience and a little bit of money. And as I continue to gain more knowlege towards becoming a Speech Therapist, I will eventually do internships and graduate. From then on, graudate school would come up eventually, but I still won't forget other dreams, ambitions and future life occurences that come to mind. Oftentimes, we don't know how our desired future will come to place as everything seems a blur. But as we continue to try our best and rely on the Lord's help, then things do get better. Becoming an adult can be difficult and eye-opening as more responsibilities are placed on our shoulders. However, changes in our lives can be good as better things are in store for us, or we can be reminded of how past occurences have made us stronger and changed us in positive ways.

Summer to-do list

Since I have stayed in Provo, I realized I need a better life than just working four hours a day and then doing nada. I have oftentimes found myself bored. My roommate Klair and I like to go to Hip hop club and Institute, but other than that, I decided that just lounging around can only last so long! So I made a summer to do list:

Make friends at my apartment complex. It can just be a pain to have dead silence and nothing to do with nobody. I know that I need people to have adventures with as we lift each other up. I am looking forward to meeting girls and gusy who can talk about anything, love to seek for adventures and fun, laugh and goof around as peopel may think we're weird, as we can lift each other up and listen and tell about almost anything, and are as ready for as fun of a summer as I am.

Go running several times a week. This includes Run both CF Great for strides walks. Yep. 2 weeks apart. I know that my family is planning on being my team, and I'm ok with that :) After then, a few weeks later, I will be running for my sweet dear friend from my home ward, Miss Millie. There will be a large team walking and running for her, dressed up as princesses because Cancer is a royal pain. She is truly an inspiration and goes through so much, and is one of my greatest heros as she continues to fight the awful Leukemia. (You can register for her walk here: http://milliesprincessrun.org/

Go swimming. I freaking realized that I have a pool literally right outside my window. I hear people splashing around and joking, and I think, "Golly that sounds fun!" I usually only go swimming once or twice a summer, so why not take advantage of it this time?


Listen to more country music. I realized how much I love it, and I often ask my friends, "Who sings this?" and their reaction may be similar to "How do you not know this?" My radio often sounds staticy, but that's what Pandora and Spotify are for.

Not be afraid to wear my hair curly more often/actually do my hair more often. I'm very indecisive on this one. Curly hair is hard to manage.

Buy at least one pair of colored jeans. I see them everywhere and I think they look fun and adorable. I'm slowly catching up to some fads. In fact, I just bought my first pair of Toms last weekend!! (I am having a hard time typing this out right now while trying to not have a highlight, so ignore the 'highlight' haha)

like this pair or something similar :)

Go with friends up to the mountains. Whether it's hiking, camping, having camp fires--they all sound fun. I love being up in the woods in the summer when it feels warm and cool.

Go for summer treats. Snow cones, smoothies, frozen yogurt, slurpees. Nuff said.

Catch up on movies. I am actually starting this tonight! Klair and I met someone at institute, so we decided to have a pizza/ movie night and watch Thor and Captain America (I have seen Captain America. I am going to try to stay calm while watching it because Chris Evans is so fine. He is one more reason I am proud to be an American.) I am also excited to go to the movies and see some such as the Dark Knight Returns, Brave, and Spiderman.

Go to the zoo. I'm not sure when or how, but I'd like to.

Reading parties. I know, it may sound lame, but I enjoy reading when I don't have to. And I'm close to a library, so it shouldn't be too hard.


Here are more to-do's for the summer:
Build a fort.
Breakfast for dinner
Have parties
Craft night
Run in the sprinklers
Make cookies for friends
Mini golf/bowling
Sidewalk Chalk Art
4th of July parade/Freedom fest
Make popsicles
Dollar movies
Play on the swings at a park

And all other jazz. Last but not not least, I am planning on seeing WICKED for the first time this summer! I can't wait! I know most of the songs and I don't think my family has a clue that I do, but they will probably figure it out :) 

On top of that, I'll just be seeking for more adventures and fun :)

(Once again, ignore the highlights, as I don't consider them higher on the list. Blogger was being weird.)

However...

I realized my post yesterday may have come off the wrong way. I believe everything I said, however...

CF is not easy for any patient. It's not blissful. It can be gross, deceiving, painful, and discouraging. It was a mistake on my behalf to say that most patients feel a certain way about their lives or find it easy. It's hard for all of us in many ways and we all face our battles. My life is not perfect in any way, but I believe that our experiences we face help us recognize more easily what happiness is.

I feel blessed to having been out of the hospital for a while now. Why? Because I remember the times where I would be so sick I was excited to go to the hospital. I still have my scars from the times when a long needle would thread the picc line tube from my arm to my heart, and being counting the holes in my arm from the attempts (I think once it was 12 in 2 hours).

I used to have night feedings through my g-tube to gain weight, and would feel very sick afterwards and would sometimes retch the next morning. (Thank goodness I no longer have to deal with that).

I still get mucus and lung infections as well as catching sickness easily. At times I wake up in the morning, feeling as if a belt is squeezing my lungs, making it a little harder to breathe.

I exercise not just for fun, but to live longer and stronger. Although I usually enjoy running or working out, it doesn't come easy.

I have faced side effects of medications. While in college, I've had roommates complain of how "disgusting" the things can be to them. This last semester, there were days I had to close my bedroom door so nobody could see me in pain after a medication kicked in. I would be nearly blacking out, about to retch, gasping for air, feeling as if my head and eyes were inches away from a large flame. Then I would have to hop on the bus to go to class, and pretend everything was normal, get off the bus, and set each tree as a mark as it was hard to breathe and walk. And yet, as I strive to live each day, I am usually happy and well, but there are those days, and people have often resented how "perfect" my life my seem.

Through all these experiences, I'm not "normal, " but I am not invincible. It all comes down to the help, guidance, comfort and love I have received from my Heavenly Father and the Holy Ghost, and the hope that the atonement and the Plan of Salvation have brought me. I am grateful for the blessings that the gospel brings, such as knowing that my Heavenly Father is always listening and that he answers my prayers in His ways to help me grow towards what he wants me to become. These hardships are only a few of encounters that I have faced, but I am glad for these experiences. Please, once again, do not think "Oh you poor little thing" or shrink back from fear or uncertainty of this complicated condition. It's different for each patient, but I don't like being looked at as "the girl with CF" in a negative way. Each person faces different challenges in their lifetime.

You may now be thinking "Wait, well, don't those pictures pretty well show the hardships that Cf people face, or even what you described?" My point is, yes, sometimes they do. And yet, sometimes they don't. All of us patients face our challenges. Even though we face misery and pain every now and then and are not always having "Pollyanna Days", our lives are not always miserable and painful. We have learned (and still learning) how to enjoy each day because of the hardships we may face. In my opinion, everyone, whether they have Cf or not, usually learns what happiness is after facing misery. They are opposite, but we cannot know what happiness is without the bad days. Cf is not always morbid and depressing. I find Cf patients strong, even when they don't feel like they are, as they are filled with courage and hope or are searching for it, even when all seems to be going wrong. Just remember that things do get better :) Once again, each person is different and faces certain situations that make them stronger. This is a difficult subject to talk about because every person has their story. It's time to raise awareness of the complexity of Cf--hardships and the accomplishments that we face. Life is truly beautiful.

CF Awareness Month--How I See It

I recently read a blog post from another girl with CF, as she brought up this issue on her blog "I have CF, so what?". I decided to talk about it as well. Since this month is CF awareness month, there may be a lot more advertisements seen on webpages and in the media to draw in more attention. However, it is important to keep in mind that not all advertisements are correct. It is good to keep in mind that any organization will try their hardest to grab attention through messages that are moving, motivating, or in which ever way they can to pull people's heart strings. Yes, many messages can be correct in some ways, and inspiring messages can lift us up. However, I have heard of this"straw" analogy displayed through this advertisement before. I was confused when I saw this, because having Cystic Fibrosis is not this way. I am going to be upfront and blunt: this flyer is not true for most patients. I feel for those who are on their death bed waiting for a lung transplant, but how is it fair to say that "people with Cystic Fibrosis all feel as if they are breathing through a straw?"

I have a deep respect for the CF foundation for all the work they do, and I support their efforts to find a cure. (I am even trying to fundraise for Great Strides once again this year.) But why put up advertisements that falsely portray many of us patients? When I think of all the CF patients out there, I don't think of them being weak or sad about their lives. As I have read CF blogs, heard different viewpoints and the accomplishments that they have done,they are some of the strongest people that I look up to--not because they are "dying." They are living, enjoying each day. Many enjoy playing sports and running, and sometimes even join college teams or run marathons. Many graduate with Masters or PhD degrees. They grow and raise families, while loving and teaching their children while being incredible examples and leaders. Every CF patient is unique and often has incredible experiences and chances set before them. As many of us have learned responsiblity and hard work, we don't give up. We are fighting for our lives, but we feel free as we know how good consequences can follow each action we take. We do treatments, take meds, have our sick days, our Pulmonary Function tests may bob up and down every now and then, we face health roller coasters or find ourselves in the hospital to recover. Many of us have surgery and picc line scars to remind us that we conquered another fight. However, these experiences do not define our lives. They remind us to live each day fully and that everyone goes through hard times. We may not always have, as I call them, our Pollyanna Days where we have to be optimistic about everything, but these messages people try to bring across about CF are not always correct. Instead of that ugly black background with a stick-like straw to portray our airways, there needs to be something to show hope and fulfillment. Brighter colors, smiles...I don't care.

Along with this advertisement, I have seen photographs that people may call "beautiful."

 I understand that this photographer was trying to bring an inspiring message. I appreciate his attempts, but I was extremely disturbed instead of feeling moved by looking at them.

Once again, I feel for the struggles each patient faces. I feel for the families of those who had CF patients pass on. I love the CF Foundation and applaud them for everything they do. It is important to bring up awareness for Cystic Fibrosis , but keep in mind it is not so morbid and depressing. Many false advertisements and messages given cause people to shrink back from CF out of fear or uncertainty of how to handle the situation, or look down at the patients as "Oh, you poor little thing!" *cough* 2 HUGE pet peeves of mine *cough* Instead, remember how CF patients are often what you may call "normal." We have our passions. We may love to party hard or feel reserved. We have talents and gifts. Each patient is their own individual character, and for many of us, CF does not stop us. There is no need to have donors feel so much pity for us. It's time to be aware of not so much of the morbid things CF can bring, but remember the successes the CF foundation has brought with technology, and most importantly the strengths of the heros who love their lives.