I hate CF

Just some ramblings about my thoughts before I go to bed....

I am so glad that I've had so much support from everyone in the cystic fibrosis community... Each and every CFer I have met, whether it be online or in person, has touched my life. They are all so unique and special in every way. I am so very thankful to know the people I do and have the amazing support group that I do.... but sometimes it is SO hard being such a big part of the CF Community. It really pulls on my heart strings and I try so, so hard not to let it. But sometimes it happens.

There have been some amazing and life changing events with some of my CF friends and their families -- new lungs, new drugs, new leases on life... It's incredible. But there has also been a lot of scary and life threatening events as well. Hospitalizations, organ failure, etc. These are the moments that I try not to focus upon. I try not to get wrapped up in them. But it's hard.

One of my good friends husbands has been in the hospital all month fighting for his life. His organs are slowly failing and he desperately needs a transplant. Many of my CF friends are slowly getting worse. The progression of the disease is speeding up at a scary rate. And some of my CF friends are hanging on and doing fairly well.

But tonight I am just angry. Because cystic fibrosis is in no way fair. I always hate CF... always. Why wouldn't I? It stole my husband from me.

But tonight I hate it especially. I have been seeing a lot of my two best friends now that I'm back in Utah. I LOVE being around them and hanging out. I don't really have any one else to go to right now. But by being around the CF routine this time... well it's not bothering me, I really don't mind. It doesn't particularly make me miss Spencer or anything. But this time I am just mad. And being around it the last couple of times I didn't have many emotions tied to it. It was fine. But this time is different. I am remembering how much one goes through. How much Spencer had to go through, and more. Staying up late to do treatments even though they are exhausted. Having to get up early to get an extra treatment in. Resting frequently. Not having the energy to get up. Having to wear oxygen more frequently to stay alert, have more energy, catch their breath. Coughing constantly to clear their airways so that a deep breath (a "normal" persons shallow breath) is possible.

In a way I hate that I know so much about this disease. I hate that I am so educated sometimes. I hate that I've seen CF through it's bitter end. What it has the potential of doing. To those afflicted. To families. To friends. I hate seeing the progression in my friends. It terrifies me. I don't want to lose my friends to this disease. Ever. =/ I'm not saying that I'm going to lose them anytime soon... no, not at all. Most of my friends are far away from that. But it's hard knowing that CF is just naturally progressive. It's hard just simply "to know".


Sometimes it's weird to realize that I've actually forgotten what the day-to-day life of a CFer is since losing Spence. I think that I remember like it was yesterday and that I could live it again in a heart beat if I had to. But being around it again makes me realize that what I once knew as routine is now slipping my mind. And though I think it's a good thing, because it is no longer part of my life -- in a twisted way I am really sad that that's not the life I am living anymore. If I was still living that life, my husband would still be here. And so a big part of me wants that life back. The hectic, terrifying, exhausting, never resting life that I once had. That we once had.

I'm not feeling sad as in I just want to sit here and cry about it. But I'm feeling that truly heart broken feeling. That feeling where you just desperately want to do more. You just want to take matters into your own hands. The feelings where you so badly want it to be you and not them. Yes I am angry. But I think a good word to describe it right now would be melancholy.

I know that this feeling will pass. Tomorrow I will continue to hate cystic fibrosis, of course. That's why I am so passionate about finding a cure. But tomorrow I will not feel quite the hatred and sadness that I do tonight. Cystic fibrosis has completely changed my life. I have grown in ways that I never thought possible because of being the wife, caretaker, and friend of those living with CF. I have met people I would have NEVER met had it not been for CF. I wouldn't be in Utah, a state that I LOVE if it wasn't for CF. It has brought good into my life. Very fulfilling, gratifying, and wonderful moments into my life. Love. Life. Happiness, believe it or not. I would not be the person I am if it weren't for cystic fibrosis.

But it doesn't stop me from hating it. Loathing it, really, when I think of it taking my husbands life and when I see it affecting strangers, my friends, and my best friends. So for tonight... FUCF >.<

Catching Up

I was tagged for another blog award, but I think I'm going to save it for the end of the month! So I just thought I'd write a little bit about the last couple of days being in Utah because I'm short on time and don't want to fall another day behind in the UBC!

Thursday late afternoon I went over to Adam and Christine's house in Salt Lake City. I was so ready to see them! They have been here for me though thick and thin and I couldn't ask for anyone better to be my friends! Adam and Christine helped me finish my resume and then Adam helped me start the application process to apply for open positions at ARUP Labs. I applied for over 14 open positions! After Adam left for work Christine and I played catch up with our lives, played Lego Pirates on the Wii, and then watched the Bachelor Pad on Hulu! Boy did we have a great time watching that together. Before we knew it it was 11 PM! I stayed the night at their house and then yesterday Christine and I went up to Park City to grab lunch and look at all of the shops with her friend. Again, we had a great time.

On the way back to Ogden, Christine and I talked about various things, with hardly a quiet moment, and it really made me realize why she's my best friend! We are so alike and we relate on nearly all levels. It's so nice to have that one person in your life who is just like you and you can really click with. It's something I haven't had for a really long time.

After getting back home I decided to go to Starbucks to grab a cold drink and check my e-mails. To my huge surprise I got an e-mail from ARUP saying that they want me to call to set up a phone interview!! I really felt on top of the world receiving this e-mail. I know that this process is kind of a weeding out process to see who is truly interested and who really fits the job description. But it is a step in the right direction. Hopefully I can do VERY well with the phone interview and get an offical interview! I am SOOOO NERVOUS! But very, very happy!

I also found out that the article I was asked to do through the Starlight Children's Foundation for the Huffington Post is finally all put together and the Post loved it! I am working on writing up a short bio and then soon it will be posted! I am so excited to share with you guys! I'll post it as soon as I can!

So now I'm getting ready to head back to Salt Lake City to Adam and Christines again (I will be there a lot!) to chat, to have a BBQ with them and their neighbors, and have a game night based around the olympics! I'm excited to be able to be around a bunch of people. I'm staying the night at their place again tonight to go to church with them in the morning. So off I go to finish up some deviled eggs and make the trip to SLC!

Tag! You're It!

Whoo Hoo!! I'm finally part of the "in" group on the facebook page for the Ultimate Blog Challenge! I've seen so many bloggers being "tagged" to answer these questions and I do have to say I've been a little bit jealous! When asked, I love answering questions about myself -- harmless little questions that help YOU know more about ME. I was surprised and super happy when Holly from Aggravation Station tagged me! I have been reading her blog from day one of the UBC and have fallen in love! She always makes me smile, and usually makes me laugh! Thank you so much!

So the rules to this little game are this:
1. Post the rules
2. Answer the questions the tagger has set for me in her post.
3. Create 11 new questions to ask those who I'm going to tag.
4. Tag 11 people on the Facebook page with a link to this point.

So here we goooo!

1. What are your guilty pleasures (you know those ones you love but are ashamed to admit) for the following: Movie, Music, TV Show
Movie: I honestly can't think of a movie that I would be ashamed to say that I watch and enjoy!

Music: There are a few songs from Miley Cyrus and Justin Beiber that I really, sorta, kind of, enjoy :-P Did I just say that... yup - sure did.

TV Show: Gossip Girl. Ughh the drama, romance, and more drama of the upper east side really draws me in. It's an addiction that I can't stop. I really wish Netflix would hurry up and post the next season for streaming!!!!!!


2. What's one thing you did as a child/teenager that you know disappointed your parents?
Yikes... This is a really tough one for me. I know you all are probably looking for something juicy, so to say, that I did -- but really, I was a rule follower and a goody-two-shoes (heck, I still am!). In fact to my memory, everything I did made them proud of me. The only thing that I can think of that pops into my mind that I'm sure disappointed them is breaking curfew one too many times to stay out with friends. And that, really, isn't all a huge deal! Mom, what did I do that disappointed you?! haha.


3. If you could have one super power, what would it be?
The ability to manipulate time. To stop it to have extra time to figure something out, or to enjoy a special moment. Or to speed time up to quickly get through something boring or undesirable! Maybe even go back in time to relive something wonderful =) Of course all super powers would have their downfalls... but let's pretend, for this moment, that they don't ;-)


4. What is your biggest fear?
I have a lot of fears but to make this easy... Spiders. I absolutely hate spiders, even the tiny ones. I'm so sad Spencer isn't around anymore to take care of them! Ha!!


5. If you could go for a beer or coffee with any one person, dead or alive, living or fictional, who would it be?
No I'm not going to get all sappy on you or anything, and again you might expect some out there answer about some dreamy fictional character... and sure - I would love to. But honestly? There's no one that I would pick over my husband. I just miss him too much to pass up an opportunity like that! And of course I'd ask him to stay around awhile ;-)


6. What song do you want played at your funeral?
I have thought about this a few times, actually. Especially after the 5-funerals-in-a-year thing that just happened. It's hard to narrow it down to one... I really don't know what song I would like, but I can tell you this -- Something by Jon Schmidt MUST be played... hands down. I don't care what song... but one must be played. He's my FAVORITE pianist and there is no way that one of his songs COULDN'T be played at my funeral!!!


7. What's one mundane thing you have to do just about every single day that you wish you could be without?
Hmmmm. Taking my medication. I know that it only takes about 15 seconds tops, but it's really one thing, that's not at all exciting, and that I REALLY wish I wouldn't have to do. (Crap, speaking of meds, Atenolol calls my naaaame, I hate when I forget!)


8. What talent do you wish you possessed that you currently don't?
I can kind of play the piano, but mainly all you hear is the same phrase being repeated over and over again painstakingly slowly with the same mistakes over and over again until I get it right. Then I move on to the next one and forget the first ;-) If I sat down, properly learned how to read the bottom hand of the music (because the right hand really isn't an issue), and then practiced putting it all together, I think I could play fairly well. My mom is amazing at the piano and I have a deep passion for piano music. And everything I know I taught myself. So with all that being said -- I really wish I could play the piano.


9. What did you wear to your high school prom? Describe your outfit.
I went to 3 high school proms! Sophomore, Junior, and Senior proms. I will just post pictures, because I am a picture kind of girl.

This is the ONLY picture I could find of my Sophomore year Prom (and this isn't even my prom.. it was my boyfriends lol) that even showed a small part of my dress. It was pink and pretty. But it was just all the wrong color. I am so pale!!! I look so strange in this picture haha.

Here is a picture of me and my date, Taylor, at my Junior prom. This was such a fun prom! And I LOVED LOVED my dress!!!

 And here is a picture of me and my date, Spencer, at my Senior prom. I wasn't a huge fan of this dress, but it worked and it looked nice =)

10. If you didn't require extra training or schooling, what would your dream job be?
A doctor... specifically it's a little bit harder to narrow down. A pediatric hematologist/oncologist, or a pediatric (or even adult) pulmonologist specializing in cystic fibrosis. Yes, I really do want to be a doctor... but alas I'm not quite willing to go through the schooling and grueling process of it all.


11. What is your favorite household chore?
Haha... favorite... Funny. So basically the one that I hate the least, right? ;-) I don't really mind dusting I suppose. I don't like having to take everything off of the shelf and putting it back on, but dusting isn't bad.


11 New questions:
1. If you could live anywhere in the world, where would you choose?
2. What is your favorite memory from High School? What is your worst?
3. What are you currently reading? (Books? Magazines? Newspapers?)
4. What would you say your biggest accomplishment has been?
5. Who do you look up to the most? (dead or alive)
6. What is your favorite recipe? Share it!
7. What is your most embarrassing moment? Or if you don't want to share because, you know, it's just too embarrassing; have you done anything to embarrass someone else?
8. What is your passion?
9. What 3 websites do you most frequently visit?
10. If you won the lottery (millions of dollars), what would you do with the money?
11. What is your favorite tradition?


11 people I want to join me: (If you're not on the list, feel free to join in!) ((PS.. this is really hard to pick 11 people! haha)) (((And PPS... If you don't want to participate that's totally fine!!!)))
1. Renee King -- A View To A Thrill
2. Emily Brewer -- My Inspired Life With Fibromyalgia
3. Brian Jones -- Brian's Phirst Blog
4. Cheri deFonteny -- Idle Chatter
5. Christine Sinness Calvin -- Inspired Life
6. Johnson Tosca -- Midnight Musings
7. Patricia Swanepole -- Living Life My Way
8. Susan Wilson -- Ripplespillers
9. Wendy LugoSantiago -- Mind, Body and Soul10. Jodi Rosenberg -- 100 Smile Challenge
11. Melissa Barham -- Barham Virtual Assistance

This job is..... me.

If everything works out in my favor, I definitely have my near future planned out. This is very exciting for me especially because of the fact that just a few weeks ago I had no idea what I wanted to do with my life. Now true that I don't know what I want to do with my life in it's entirety, (career wise and such) but having a goal and a plan for the next year or two is a big step in the right direction. 

I think I mentioned the fact that I wanted to sign up for phlebotomy classes. I'm not sure that I wrote that the very next day I took the plunge and signed up for classes beginning on August 2nd! Just one week away! I am nervous as heck about them, poking people and inflicting pain while being poked and prodded by people just like me, without proper technique, but at the same time I absolutely cannot wait. I have been interested in this field for about 6 years now and I can't believe that I am finally going to take a course, get a certificate (and if I so choose a national certification) and peruse this curiosity and interest and take it to the next level! Everything that I have ever wanted to do before requires at least 4 years of schooling…. and now I can get something done that I want to do in just 6 weeks. Granted this isn't the end of my schooling - I still have a LONG ways to go… but this is a stepping stone in the right direction. I am going to find out if this is, in fact, the career path that I want to choose. I am SO ready! 

I found several job openings at ARUP Labs and I strongly feel that this is where I need to be. I can't work as a phlebotomist for probably about 7 or 8 weeks (classes and externship) and even then I will have to find some way to get on the job experience before I can apply for specific jobs. For the past 3 years when thinking about phlebotomy I always thought it would be fun for me to work in a hospital and I've always noticed ARUP staff running around the hospital, labs, etc. I always wondered if that could be me. SOOOO… as I said I found jobs open at ARUP as a lab tech and I am going to send in my resume and application tomorrow or Thursday. Reason why I think this would be the ideal place for me to work is because I think it will be a nice look to see how it's done…. What working in a lab consists of. It's also getting my name in the door at their lab. It's a stepping stone for a future job at ARUP labs as a phlebotomist when I am qualified. By working as a lab tech I can allow myself some time to get some experience and then with all hopes I will be able to transfer and get a new job within their company. Smart, huh? I sure hope so. 

I don't think I have ever wanted a job so badly to be honest with you. I sat down today and read, and reread about 100 times, the job description. I picked out several key qualifications, strengths, and skills required and preferred to work as a lab tech. In fact I picked up on about 15 of them. I am having a hard time picking out which ones are the top three and describe be best… because they all fit who I am. I match up nearly perfectly with what they are looking for. About the only thing I am lacking is previous lab experience. I do have lab experience with HS labs and my anatomy lab, which is great… I just don't know if that's the specific experience they are looking for. 

So I match up to their job description nearly perfectly and it's a job that really fits my interests. The hours are fantastic and very manageable for me. The pay is fantastic and will allow me not just to get by month to month, but to be able to pay off my debt much, much quicker than I thought I could so that I can go back to school to finish my degree. I would also be able to afford my OWN place and not have to live with a room mate. All things that I can only dream of right now. All things that I so badly want.

As I said… not only do I desperately want this job, but I strongly feel like this is where I want to and need to be. I feel like I am a perfect fit for the job. But how to get that across? How to type out a cover letter and resume that isn't like all of the others and really, really stands out. Yes I can totally say that I'm accurate, timely, reliable… which I AM, it's just in my nature and who I am… but how do you say things like that in a way that doesn't sound like how everyone else says it?! What the heck can I do to get myself an interview to expand on the limited things that I am allowed to write? I want an interview. I want a chance! 

I feel like I have already spent so much time on trying to make this perfect and unique and not what they want to hear, but what I really have to say and who I am…. yet I haven't gotten very far at all. 

I am such a modest person! I don't brag about anything! I keep my talents and my strengths to myself. When I'm asked to present them and talk about them I freeze because it's something I'm not used to doing. I am awful at selling myself… at least on paper that is. Give me an interview and that's a completely different story!! In person I feel like I can do a great job with some preparation! And I am NOT a person to use just a few words. I mean heck if you read my blogs, they are plenty long! Usually 2 or 3 pages on Word. (whoops lol) It's really hard for me to be concise and to the point. I like to expand on everything… That's why I want to be given a chance at an interview, I then have the opportunity to expand on things most important. 

Ahhh I just really want this. If you guys have ANY tips at all, please, PLEASE let me know. I have looked up tons of resume and cover writing tips, suggestions, and samples. They only help a little bit. What has worked for YOU? What do you feel has gotten you an interview? What can I do to get this job?

Prayers are also very much appreciated =)

First day back...

[Most of tthis post was written last night. I added some in today. I don't have internet at the house and so I couldn't post it. I tried to change the tense of everything, but there may be some words that I looked past. Just wanted to clear things up so there isn't confusion!!]

Yesterday was the day. I am officially now in Utah! Though the drive was super long (11 hours) it was pretty uneventful. I only stopped once at Sinclair. Sitting for that long really drives me nuts and starts to hurt my back but it cuts about an hour or so off of my time and it's just so much easier to go straight through taking as few stops as possible. I ran into some super heavy rain 2 or 3 different times, nice to see but really not so nice to drive in! There was a few times I couldn't see the road but then each time I thought about pulling over it let up a little bit. I'm thankful that that's the most that happened! ;-)

I moved 90% of the boxes into the house that I am staying in for a little while. It's a super cute house, only down side is there is no air conditioning and it's really, really stuffy and hot. I don't do well in heat ;-) Sitting in the fan isn't too bad, but the moment you move it's awful. Thankfully it cools down quite a bit at night, and so with open widows and a fan it's very comfortable. I even got cold last night so that's a good sign!

I don't think that I'll be spending a lot of time in the house anyway. I'll probably be at internet cafes and libraries job hunting and trying to look for a more permanent house. The sooner I find a place the better so that I can settle in quicker and have all of my stuff with me. I'm praying that a job will come through quickly so I don't have to use too much of my savings money on food, gas, just any expense. I need one to at least tide me over until this phlebotomy class starts and I can get a job as a phlebotomist. I ask again, if you know any places hiring, please let me know asap!

I did find a job that I'm going to apply for ASAP! I'm working on my resume and cover letter, hopefully will be able to send in the application tomorrow afternoon! I *really* do want this job, it's perfect. And so I'm working hard on getting an interview!!!

Last night I was exhausted! Hot, moody, lonely, tired, bored… you name it. But I know that most everything I was feeling was due to having a long day driving, being in a new place, not really knowing where anything is since I'm not familiar with Ogden, and the initial adjustment of being out here. Today as been better and as the week goes on it should continue to get better. Just have to get over this initial adjustment and figure out how to organize my days. I can already tell I'm going to go crazy not having anything to do!!!

The first day or two of being back in Utah is always hard, and really strange. This time definitely isn't any different! I feel pretty disoriented, trying to get re-used to the city, the mountains, the people, and the accessibility among other things. I feel like I'm in a haze, just kind of drifting by. This feeling isn't a stranger, but it's a feeling I don't care for, honestly. 

It's really strange being in a house without any one else. For the first time in a very long time, I'm completely alone. There were several times for a very, very split second (almost not even long enough for it to register) that I wanted to call Spencer or wanted to ask him something. And then of course I'd realize that he wasn't there. If I would have been thinking, I would have had one of my friends meet me at the house to help me unload my boxes and to just make sure I was settled in. I think it would have eased me into it a little bit easier. But that thought didn't cross my mind. Moving the boxes into the house myself made me realize that I really was alone. I wasn't necessarily upset -- but it was one of those feelings that I haven't really ever had before. 

I had an interesting and weird experience last night. I had to run to Smiths to get some food. As I was getting ready to check-out I had a couple of guys (kind of weird and run down looking) come up behind me and say "girl you look so fine". Ohhhh dear. I half-way said thank you in a pretty annoyed voice and walked away. He then said "I didn't mean it to be rude" and then I realized the tone of voice I said it in and smiled at him and said thank you, and then walked away…. feeling so weird. I've NEVER, EVER had anyone say ANYTHING like that to me in passing. And I may have actually been flattered (considering I was sweating from head to toe and I probably stuck like crazy lol) had he said it way, way differently and if he didn't look so run down. I felt pretty uneasy as I was getting ready to go back to my car since it was getting dark out and it seemed like they were taking their time, just waiting for me to check out…. so I asked the guy who bagged my groceries if he could walk me out to my car because of said situation. He did with no problem. the guys were outside on their bikes, I'm glad I asked. I don't know that I would have been harassed or anything would have happened… but I'd rather be safe than sorry. 

I thought that being in Utah for the 24th of July (Pioneer Day here) would be cool. I really don't know what I was thinking. Jokes on me, I guess. I HATE being alone on holidays. On days where I KNOW that family is together. That friends are together. It really hurts my heart and really makes me miss Spencer. I guess I should have been thinking and asked some friends to go watch fireworks with me so I wouldn't be by myself. That or just came out on the 25th instead. Whoops. Oh well… It's all a learning experience.

I took a sleeping pill last night for the first time in a LONG time. I haven't been able to sleep the past 2 nights, and since I'm in a new place, different noises, lots of heat, I figured I could use the assistance in sleeping. I'm happy to say that it worked like a charm and I slept very well!

Tomorrow is another new day. I might go to salt lake city for the familiarity. If I'm up to it maybe see some friends. We'll just have to see how things go, what mood I'm in, and what I feel like doing. I'm not going to push myself to see anyone for at least this first week. I need to adjust. I need to focus on ME and my needs. 

I am excited for Saturday. My best friends, Christine and Adam, invited me over for games and a BBQ. Always love get togethers with them and their friends, who will hopefully become my friends soon as well. 

Well it's about time I head back to the house, throw my hair up in a pony tail, sweat like crazy, and cook some dinner. Hopefully it cools down soon so I can enjoy an evening outside reading a good book =)

Tomorrow is the day

My mood is definitely shifting around to the extreme today. One moment I'm pretty happy, and then the next something bothers me and makes me upset or angry. Where I would like to vent about all the specific things, I think it best that I keep to myself since it's a public blog. 

I think I'm just ready for the stress of going out to Utah to be over. For the packing to be done with. For the moving to be complete. Though I am very much ready to get out of this house and be out of Kansas, I'm hating the fact that I am leaving my family behind. I know that my parents really would rather not see me go.. and the fact that I'm leaving I know is hurting my sister because I have really been the only thing that she's had these last 7 months. I love my family so, so much -- I really hate that we have to be so far from each other. It makes leaving so conflicting and difficult. And I know as I've mentioned in a blog before, this time moving out of my parents house is SO much different because I know that I will never be coming back to live here. 

It's hard. 

Moving is also hard because I finally was able to spend some time with my best friend from high school last night. We've always been so close. After high school we didn't talk all that much and we really didn't see each other at all. But one thing I realized last night is when you have a true friend the distance between you doesn't matter; it doesn't matter how long it's been since you've talked or seen each other.. you pick up right where you left off. It's such a great feeling, and honestly I don't have but one or two other friends like that. I'm sad that it took us so long to see each other after I moved back home. It took me leaving again to finally get together. It took a period of 'crisis' on both of our behalves when we both just really needed someone to talk to (knowing it or not) to bring us together and talk through things. I so badly wish we would have done this sooner. The conversation to help my friend out turned around and REALLY helped me out too.

Now that I can actually say that I'm moving tomorrow... it makes it real. The pressure is on to get everything done that needs to be done... and boy am I feeling it. Just needed to take a moment to be a little bit melancholy. It was needed. If things go well, I'll be going to eat dinner with one, maybe two friends soon. That will be a nice pick-me-up and break from the packing. 

Natural Talent

I have to take a moment and brag on a very special, young, girl who I love dearly. A girl who has an amazing eye for photography. A girl who has such a natural and spectacular talent yet doesn't quite see how much potential she has. 

This 16 year old girl is my little sister, Shayna. Sure, I may be a little biased since she's my sister, but I truly think she has a talent that needs to be known! I really want to see her start a website or blog specifically for her photography and pursue it more. Maybe even create a Blurb book with all of her pictures. It's something that she says she loves to do and I desperately want to see her potential just shine!

She just got a very nice camera a couple of months ago and it seems like she's already mastered it!

I have one of her pictures set as my background and every time I see it I want to show it to everyone! It looks very professional and I can totally see this picture, and all of her pictures, on a postcard or greeting card. Even as a print on canvas or something.

Here are a few of my favorite pictures that she's taken. It's so hard to narrow down my favorites. She has many more! (you can click on the photo for a larger view)

Can you see why I'm so proud of this girl?! She has an amazing talent and I hope to talk her into taking it further =) If you have a chance, leave her a comment below -- I'm sure she'd appreciate it!