Friday, November 26, 2010

Doing well; so Thankful!

So before I do a "What am I thankful for" post... I just wanted to update real quick!
Spencer is doing really, really great! =) He's had a few off days - but we all have them. Just wish those rough day's would be, well, quite so rough. When he has a down day - it's a REALLY down day, but every single time the next day has always been 110% better, so we just don't dwell on those days. Hopefully we can start to figure out a way to get the down days turned around when he feels it coming on!

His lungs are holding up very well. Spence had clinic a couple weeks back and his doctor mentioned how he sounded a little tight, but not terrible. His oxygen saturations have been doing pretty good, and she made the comment that he looks very very well - always GREAT to hear from the doctor. She was a little concerned that he might be catching a small bug so we talked about admiting him for a 10 day stay to catch it early - but the doc decided that since he is starting TOBI and has been doing a good job at home that she was going to give him a chance without antibiotics this time - seems to be working!

Unfortunately, Spence caught the stomach flu THE DAY OF clinic... He was doing fine before, but when we got to clinic he started throwing up and spiked a 103 + fever... perhaps at times even getting up to 104. Had it not been for the stomach flu, he probably wouldn't have been admitted. He had about a week in the hospital for it. But he got to steer clear from the antibiotics!!!!

He has another appt on the 6th - if he's feeling well, They said he doesn't have to go, but if he's not up to par for a trip to Kansas for Christmas, then he will probably be admitted. We're working really hard to keep him well and so far things have been going smoothly. TOBI is being taken, trying to squeeze 4 treatments in a day but usually it's only 3. Doing manual CPT when we can, taking meds regularly - it's working! HALLELUJAH! The doctor said that she thinks all the hard work is really starting to pay off!!!! AH It's SOOOO great to hear that from her. He's been deemed as non-compliant for various reasons in the past and he's trying SO hard to get that switched around so that he might be able to start Cayston in the future and also get on the transplant list when needed. I can see a huge difference now that Spence is working hard, but hearing it from the doctors is just WONDERFUL news =) Spencer should be PROUD!

Aside from all of that - Spence is going to start volunteering at his grade school with his 5th grade teacher!!!! He's really excited about that. He thinks that his career of choice is a teacher - He'd be great at it. There is a pretty big infection risk, so that's why he's doing some volunteering now, to see if that's going to be a problem or not. He's prepared to take extra precautions from the students. Wearing masks, asking everyone to sanitize hands, washing his hands a lot, only working in groups of 3-5. I hope this works out for him!!!!

Noooowwww. TO BE THANKFUL!
I find a lot of things that I am thankful for this year have to do with Spencer. We've went through such a long and grueling battle this past year and to look where we are at right now - I am MORE than thankful how far Spencer has come, and how much are relationship has grown, despite all the hard times.
So specifically, what am I thankful for?????....... Here it goes!

My family; if it weren't for them I would not be even close to where I am today **** Spencer's family; they have taken me in for the time being so that i wouldn't have to live in the dorm and I am SO grateful for all of them, even though it is a little stressful ;-) **** While I am not thankful for my Crohn's disease, I am thankful for the person I have become because of it; these last couple of months have really proved the amount of strength, will, and drive that I have **** I'm thankful that Spencer has been antibiotic free for about 1.5 months **** For the time that we get to spend together **** For all of those good days, CF and IBD wise **** That I have such an amazing fiance **** My friends... old and new ****

Trust me... there are SO many other things that I have reflected upon this Thanksgiving for what I am thankful for.... Just too many to post =)

Hope you have all had a WONDERFUL and joyful Thanksgiving with your friends and family!!

Monday, November 15, 2010

Taking a break for awhile...

I feel kind of like a bad friend lately - I haven't made the phone calls, text messages, or facebook wall posts to hang out with any of my friends lately and when I have it seems like something always comes up or I'm too busy, and I'm sorry for that. I really am. I just want you to know that it is NOTHING against you. I promise. I have had a lot going on in my life this past month or two and it's been really hard for me to keep commitments that I have made - I mean it has even been really hard to make plans for me because I don't know if anything is going to come up, or if I'll be in the mood.

So right now, as my facebook status said:

If I am distant, not talkative, or absent these next few days to a week... please don't count it against me. I've had a lot going on and a lot to deal with - I just need some time for MYSELF.. And I just want people to know, that if I don't want to hang out, or talk... it's NOTHING against you... I need to get my life straightened out and put back together...

I don't mean anything against you. I want to hang out. I want to talk, but I need a little bit of time for myself - to not feel guilty about making plans with others. Not feeling guilty about not replying to a wall post or message right away. I need some time to get my life back on track. I've been struggling and it's time to focus on ME and take it one day at a time.. so for the next few weeks - you may ask how I am... and please don't shy away from talking to you - but please don't get offended if I don't contact you back right away...

Tuesday, November 9, 2010


I hate getting behind in my classes! It happens all the time, but it doesn't mean that I don't hate it. But this time is different.
I am really behind.
There has just been so much going on with my health, my life, spencer's health, Spencer's life, planning, thinking, doing.... It's been SO overwhelming. I keep trying to tell myself that it is OK to slack off a little bit since I have had so much going on, and my mom has been trying to tell me the same thing - but gosh it's so hard to not be upset about it.

I have worked SO hard this semester to keep my grades up, and I don't want to throw it all away just because I've been having a lot of hardships and complications in my personal life. The motivation and drive have definitely been missing. I sit down to study, but it isn't productive. That HAS to change. I'm coming up on the end of the semester and I really need to get my act together.
Thankfully it looks like things are getting better. I've been able to work through some things, and Spencer is getting the things that he needs. I just need to keep telling myself, that if I keep working hard, just one more month, I will be successful this semester - despite having to withdraw from a terrible class.

I decided that this week was going to be all about school work, no matter what... Every day I was going to commit myself to homework from 2-6 every day. That's four hours and I can get a lot done within that time... Annnnd I think I finally made progress today!!! Yesterday I didn't do anything, but I spent from about 1:00 to 6:00 studying! Yay! I got about three days of physiology done today =) That is exciting to me... Do that for 2 more days and I should be completely caught up.. But then it's studying big time for my exam next Wednesday. it's going to be stressful and busy - but I can do it..

Just have to see the goal at the end.... successful semester knowing that I worked my best!

Sunday, November 7, 2010


I have decided that because it is nearing the end of 2010 that I will reflect a little bit on what these past couple of years have been like. I didn’t do this last year – so I’m kind of going to include 2009 as well.

College. It didn’t seem like I’d ever get there! High school seemed to just drag on for me… It wasn’t that I didn’t like it – but living with a disease made it really hard. Some people didn’t understand and some of the students and my friends had a hard time understanding how to “cope” with someone they know having a chronic illness. Even through all my struggles though, I pushed through it thanks to some amazing teachers and my family and graduated high school – something that is a HUGE feat for any chronically ill teen. I mean heck, it’s a struggle to get through each day let alone graduate and start a new chapter in life!!!

My decision to go to Utah left a lot of people doubting me and questioning if I was doing the right thing. Some thought that I couldn’t do it, and I don’t think a lot of people believed it me. But guess what – they can have it thrown back at them – I have been doing GREAT since I’ve left home. And it is the best decision that I have ever made. I LOVE it here. The weather is perfect. It’s not humid and the temperature doesn’t change so quickly and drastically as it does in KS. This has been REALLY good for my health. My joints have been doing a lot better and I haven’t been as sick in the summer due to humidity and heat. My health has improved in that way – and I’m so grateful for that. Something that is also wonderful is that I am in a city! I’m not going to lie – I am NOT a country girl. I don’t really care for the isolation that I felt living in such a small town. And not to mention – I dislike the farming community very much. I appreciate what our farmers do (don’t get me wrong) but it is not for me!! I am so happy that I am away from harvesting and farming. I am happy that I am now building my OWN life where I want to be. There are so many opportunities out here for me. I am going into medicine and I couldn’t have picked a better school and location to succeed. I am at a top rated nursing school and I have the chance to work at a top rated hospital!! Couldn’t have picked better!

I love my school and I am so very proud to be a UTE and dress in Crimson red! My school is great. I served on the freshman council and that was one of the best decisions for my freshman year. I met some amazing people. We have great volunteering and community service opportunities here, and that’s something that I LOVE.

A lot of people thought that I was moving here solely for Spencer. I thought my decision out… a lot. I spent a lot of time thinking about where I wanted to start my life out at. Being completely honest, yes – Spencer was a huge advantage of me attending school in Utah… but if it wasn’t for Spencer and his brother showing me the U… I would have never found this school and all the things it has to offer. Not to mention… I fell in love with Salt Lake City and Utah the moment I arrived here the very first time.

I am happy here. I truly am. And I hope that now people will realize that I made a decision that was best for ME, not everyone else. I am proud of myself for actually following my gut and coming out here. It’s the one time that I didn’t listen to everyone else telling me that I was making a bad decision.

I was told before I moved, and I continually get told that, “oh those Mormons are going to ‘get’ you! They will try to convert you. They are a cult!” all I have to say is, Shame, shame, shame on you! Coming from a small down where LDS is not very well known, it is judged very, very poorly. I haven’t once been asked to attend church. I haven’t ever been asked to talk about Mormonism. I haven’t ever been insulted about my own religion. Yes, my fiancĂ© is Mormon, but not once has he manipulated me into going to church. Not once has he asked me to talk about The Book of Mormon. I have been the one to bring everything up. I have looked into the LDS church, not because I was asked to or forced to, but because I wanted to learn more about it. I wanted to understand what they believe and how they live their life. And it honestly is not that much different from what Methodists, Lutheran’s, or just your average Christian believes. They interpret some things differently, yes, and they have temples that signify more than what we do, but we are all the same, siblings of Christ. Don’t judge a book by its cover. And PLEASE do not judge me if I chose to look into this religion more. Shame on you if you do. Open your minds a little bit.

The experience of the dorms was indeed interesting. I don’t think that life was for me. Anyone with an illness knows what I mean ;-) It’s hard living with new people who haven’t been around you your whole life, but with an illness it’s even more hard. They don’t quite understand it and it’s hard for them to grasp your needs and how you live your life. My dorm mates were great and I’m thankful that I was paired with who I was. I learned a lot from all 3 of them! Sometimes we had our different thoughts about things, but all –in-all I was pretty luck with who I was with =)

Year two of college has been a little more challenging than the first. It is easier in the sense that I now know what college is all about and I know how to study! My grades were NOT at all what I wanted them to be come the end of my first year, but I finally understand how much work goes into each class that you take. It’s stressful – but I’m coping. I moved out of the dorms and am living with my fiancĂ©’s family. It’s interesting, to say the least! I am currently looking for an apartment with Spencer so that we can start our lives together. Chances are we won’t find anywhere until we’re married – which is good, but it will be nice to create our own rules and not have the stress of living with so many people. I LOVE his family, but anytime you are living with multiple people it makes it a bit harder to fully function.

I’m LOVING college courses. I like the freedom to take what you want. Some courses are not very fun and are pretty dull, but the majority of what I have taken have been so very interesting. Along with my goal for nursing school, I am thinking about taking up a minor while I am waiting to apply and be accepted. I have LOVED all the Social Science classes I have taken, so I’m going to talk with an advisor about the different minors within that field of study. I think it will be a nice minor to go along with my major! =)

And for the biiig event that happened this year – I got engaged! Yay! I am extremely happy about it. I really wasn’t expecting it to happen when it did, but everything worked out for the best!! =) I am so happy he proposed. We’d been talking about it a little bit beforehand. We had been dating for 2.5 years, known each other for probably about 3 years. He gave me his mom’s wedding ring from when she was married. It is perfect and just beautiful. I love the fact that it is within the family.

Even though I am VERY happy to be marrying the love of my life, my best friend, and my biggest supporter – I feel very judged. I know I shouldn’t care what other people think of me and my decisions, but I do – it is just the way I am.

Look, I know I am young. I am only 19 (almost 20) years old and I am making a HUGE leap in my life so early. But please do not judge me. There are many reasons why we have chose to get married and take this step so soon in both of our lives. When you are with a terminally ill person, It’s hard to think about the future, but a must. The average age for a person with CF is only 37. Now no one can put the time a person lives… but you have to realize that life is VERY precious and you have to live it up like each day is your last. I want every single ounce of time with Spencer as I can have. I’m not rushing things… I am not moving it along quicker because he is sick. It is very important to me to be married to him as long as possible. And it is very important to Spencer to spend all the time he has with someone he means so much to him. We were going to wait a couple years to actually tie the knot, but his father was diagnosed with Cancer and with some other happenings, we felt like it was in OUR best interest and his families to have it sooner. I told him that I wouldn’t commit to setting a date for the wedding until Spencer started working on his health.. he did and so we set the date for June 10th for the wedding! I’m SO excited! Haven’t done much planning, but we’re getting to it! Lots of details to work out since the wedding is in KANSAS and the reception is in UTAH! Haha.

So there you have it… Reflections of these past couple of years. I think that about sums it up. Of course I could write more, but I’ll keep it simple =)