Goodbye 2010; Hello 2011!

Wow! I can't believe that 2010 is already coming to an end! I've had both a ton of highs and lows and so much self discovery this year. Time just flew! (though, at times, I thought it would drag on forever!)

I've been thinking about some new years resolutions for a few days now... It's been hard to not set hundreds of them! In order to make my resolutions stick - I need to only make 3 or 4 and they cannot be too far out of my reach.

Tonight I was seriously thinking about it - and I think I've narrowed it down.

1) School comes first! No more procrastinating. Before I let myself on my computer, watch TV (except to wind down after getting home for a few min) I need to make sure that I get my school work out of the way - then comes the fun =)

2) I need to do things the moment I think about them. Mostly this is talking about phone calls. I have a seriously bad phone phobia. I HATE talking on the phone. So I procrastinate phone calls and this year I've gotten myself into a few pickles that way - No more this upcoming year. If I know something needs to be done, it will be done the next available moment I get.

3) Be more compliant. My health needs to be a priority more than it has been. I need to make more of an effort in taking my meds and making sure that I'm doing everything I can to make every aspect of my health (social, physical, emotional, mental) is in tip top shape, not only for myself, but for my fiance as well. Not only that - but this includes making myself go to the gym or just getting out and walking more frequently - staying in shape!!!!

4) Involve myself more. I easily get caught up in things and I have a hard time letting myself go out and just have fun. I will either be tired from the day, not in the mood, be feeling sick - but I really want to try to not let these things stop me for the majority of the time. Granted because I have an illness I do need to listen to my body if I am tired or sick - but there are sometimes that I use them as an excuse! No more!

I want all of these to be my year long goals and I believe that they are very obtainable and can be done - but not without effort. It's going to be hard and at first it will NOT be perfect!!! I have to accept that they will not be perfect starting out, or even throughout the year for that matter.

It's a new year, so why not start this year with some positive changes in my life... I mean it IS easy to think about the year and be determined to change everything - but I know that it is NOT EASY.... gosh not easy at all. Old habits die hard. But this year has really opened my eyes to life and what I really want out of it. I believe that these resolutions will help me.

Now not only do I have some long term goals - but I have a few short term goals too!!!!

1) Get into wedding shape!!! I can do it - I know I can, just need determination!

2) I need to get a job ASAP. No more just looking! I need to actually apply. I realize that I may not find a job that I like, but if I can just stick with one for the short term - I can get a great one in the long term!

I know I am going to add more as the year goes on, but those are the two major things I want to work on immediately!!

I thought maybe writing all these resolutions down will help me continue with them instead of just having them in my head. Maybe those of you that read this can help me :-P

Thats all for now! Happy New Year - I wish you all a very happy, good, and fun year!!!

Thankful Thursday

I woke up listening to doctors and social workers talking to Spencer - and I just immediately fell into a negative mood.

BUT after getting on the computer and reading Ronnies Thankful Thursday blog - thought that reflecting upon some of the positive things going on right now would be best to at least try and lift my mood a little bit.

Thoughts may be hard to come by - but I am determined to find FIVE positive things that I'm thankful for!

1. The wonderful Respiratory Therapists taking care of Spencer. Some of them only seem here for the money... but there are a select few that are really invested in the patient and care. I feel so thankful that there are those few that go the extra measure to make sure that Spencer meets his goals while in here.

Here are the differences between the ones that care, and the ones that do the bare minimum:

** When he is sating at around 96% at X amount of oxygen (meaning he is able to try to go down a half a liter to a liter) the good RTs will understand that Spence is trying to get OFF of oxygen and so they will put him down, and then 1/2 an hour later come back and check his sats again to make sure he's doing okay. The other RT's.... unless Spencer specifically asks to be turned down, they just leave it and walk out - If he asks to be turned down a little bit, they will turn him down and won't return to check his sats. Kind of frustrating as we have to ask other staff to check them.

** The good RTs will make sure Spencer has a PEP and they make sure he USES it. After every treatment they will make sure he does at least a set of 10 and then huff coughs after to help loosen up mucus.. then they will check his sats after he does PEP as well as listen to his lungs yet again to see if he made a bit of progress. The other RTs? They don't offer the PEP to him - and if he starts to do it, they will just leave in the middle and half the time they don't chart that he's doing it... =/

** We don't always expect the RTs to stay in the room the whole time while he is doing his treatment and be talkative - but it's nice if they do. Spence recently had an RT who gave him his neb and vest, and then left the room entirely. Spence got down with his albuterol and figured that he'd be back after his vest - nope - we never saw the RT again; so we were responsible for putting the vest up, tubing and neb up as well.. That's not our job - That made me angry. The RTs who really care will stay in the room the whole time to make sure his treatment is done PROPERLY and FULLY. As is their JOB!

----- Now why am I thankful for Spencer's RTs? Because they are invested not only in the short term... but in his long term health and future. If it weren't for them, Spencer's PFTs won't come up, he won't get discharged as early, and he would be in the hospital more frequently... really, the RT is one of the most important parts of a CFers stay....-----

2. I am thankful that this semester is OVER and my major is CHANGED!! This semester was so difficult for me and nursing is honestly, really hard and time consuming. Not only do you have to get superior grades in all the pre recs... but you have to volunteer, get a CNA job... experience, letters of recommendation.. etc etc etc... You have to wrap your life around it, and right now I don't have that kind of time and commitment. I was getting WAY stressed about it. I changed my major to Human Development and Family Studies... or something like that - and I am already feeling SO much better about it. My new goal is to become a Child Life Specialist. We'll see if nursing fits into the picture later. but looking at everything as a whole (all the classes, a job.. etc) I think this fits into what I really really want to do, and I am EXCITED for it!

3. I get to go home for Christmas. Yes, this is a touchy subject as I am not yet sure if Spence can come... but if I look at it selfishly - I will get to travel home. I get to see my family soon and I am overly ready. I miss them so much. Moving away from home 2 states away was one of the hardest decisions I made because I am so very close to my family. So I am so thankful that I have the opportunity, money, time, and transportation to be able to spend a couple weeks at home =)

4. Feeling better. Though I am not up to par, and i am still feeling kind of junky.. Overall I am feeling 80% better than I did a week ago. My ear is starting to drain so I am able to hear a little bit better, my throat isn't hurting as much, I am getting back my energy little by little. I am SO thankful that I didn't have to go to a doctor. With no insurance and little money - I couldn't afford that. And I think I was lucky enough to avoid it.

5. Even though I'm a little upset with the current doctor who is over seeing Spencer, I am thankful that Spence has a FANTASTIC CF doctor (a different one than the one who is looking over him right now) She has a GREAT bedside manner, she is very sympathetic and empathetic, she truly cares, she listens and tries to help you out in whatever way she can, her goal is so that you can have as 'normal' of a life as possible. She is just an amazing person and makes a great doctor.

There's my list =) It's ALWAYS good to reflect upon the positive things in our lives sometimes. It is SOOO easy to get consumed in everything that goes wrong, and all the negative things that happen.... You can't live life fully if your always absorbed in the negative. I'm glad I spent the 30 minutes to remind myself the joys in my life --- I hope YOU do the same!!! =)

-Nikki

Defeat comes with new beginnings =)

Ahhh I am so happy today =)

I am FINALLY done with fall semester!!! Ugh let me tell you - this semester was just brutal. I had to withdraw from a class, I opted no credit for intro to Chem, and i struggled my butt off through physiology. I had a lot of health issues and I ended the last 2 weeks of the semester being very sick with the flu (in which I'm still trying to get over).. but it's over and I'm on to better things =)

I decided that it was within my best interest to change my major -- that is a topic for another blog (I have a ton of blog ideas running through my head! Just have to make the time and effort to sit down and write!) I originally had a minor in Human Development and Family Studies in addition to my major of Nursing - but decided to turn the minor into my major to be a Child Life Specialist and see where Nursing comes into play in the future... Again - more about that later.

And now for an update on the fiance..... Spencer is improving - and he's improving quite quickly!!!!! It seemed to just hit him so suddenly.. He was so sick when he came in and he wasn't improving as quickly as usual, I was getting nervous.. But maybe this fast and sudden turn around was prayers being answered perhaps? =) Whatever it was I'm really liking it!

Last night I went to bed feeling a little defeated and let down... Defeated from CF because I felt like it was taking over our much looked forward to plans.. We have been planning this trip ever since fall break. We were going to go to Kansas so that we could spend Christmas with my family this year.. And mainly he was coming so that we could plan nearly every detail of our wedding with my family and getting some help along the way.. Not only that but talking to several people and setting up photographer, florist... etc - I was getting so nervous that this wall all suddenly not going to happen - and I honestly didn't know how to deal with it. I am already sacrificing seeing Temple Square lights yet again this year so that there wouldn't be a chance of Spence catching a bug from all the people so that we could go to KS - but now I have to change all my plans cuz CF had to get in the way yet again? I mean I am finally okay with not seeing the lights - I can live... It's MUCH more important to me that Spence come with me for Christmas! Sometimes we have to evaluate what is most important in our lives and just go from there... this was just a simple reminder of that fact...

BUT... my defeat was turned around this morning when I awoke, and Spencer was off the mask of 50% oxygen, and on a nasal canula at 6 liters :-D That was enough to start my day off GREAT! Any progress is GOOD. He seemed really chipper today from the very beginning, and that was also an excellent sign - increased energy.. w00t!

Then during his first afternoon treatment he was sating 96% on 6 liters so the RT turned him down to 5 liters - w00t! I am so thankful to have good RTs like this one, we'll call him J ;-) He really cares. He's not just here for the money. He is genuinely invested in the patient and that is a rare thing. He is determined to help Spencer get weened down on the oxygen and get in good shape to be discharged on Monday. Thank you, J, for all that you do. We REALLY appreciate you!

So off Spence went to exercise and rehab went well for him, and then came his second afternoon treatment.. sating about the same so J the fabulous RT turned him down to 4 liters! uhmm YA!!!!! After his treatment, PEP (J makes SURE he does PEP after every treatment, at least 10 times!), and huff coughing he was sating 94% on 4 liters... Oh gosh that is just FANTASTIC!! Mind you that that is at rest.. when he moves around I think he needs a little more - but he's been heading in the EXACT direction that we want - weaning off O2 quickly, more energy, and he's just full of life today - SO great to see after such a defeating day previously =)

Goal is 3 liters of O2, feeling back to his 'normal' (I am really using this term loosely, as what IS normal anyway?!), and much improved PFTs and energy... His admission PFTs were really low for him... so we need to get them back in the mid to high 30's for him to be discharged!!! GO go go!!!!!

If all of this happens and he continues to improve then we should be SET TO DISCHARGE MONDAY AND GO TO KANSAS FOR CHRISTMAS!!!! I am SOOO excited! I honestly and truely believe that he can do this and be out of here.

THANK YOU for your prayers, good thoughts and support. THANK YOU, THANK YOU, THANK YOU! I couldn't ask for more =)

And a little note to Spencer - I am so PROUD of you. Proud of how far you have come. I know you have had many setbacks - way more than triumphs lately - but you have honestly exceeded my expectations on how hard you have been working and how much effort you are investing in your health and our relationship. I can see the determination shine through - and I know you see yourself making the progress and I can see how happy you are. It's okay to have down and off days - but just don't let them consume you. You are fighting and giving this your all - I see it, the doctors see it, even the RTs are noticing a difference. You can do this and you have so many people cheering you on and supporting you. See that and use it as motivation to fight. You may have Cystic Fibrosis, but Cystic Fibrosis does NOT have you! You make me proud to call you my fiance, friend, supporter, and fighter. I love you and thank you for your investment in our future. xoxo

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!!

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...

Behind!

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!

Reflections~

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 fiancé 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 fiancé’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 10^th 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 =)

-Nikki

Leave him alone! =(

For the most part things have been going wonderfully =) Got out of the hospital on Monday. That evening Spencer and I went to DI and PetCo and just spent some time together. Him being on only 2 to 3 liters while we are out is a blessing. It really is. Hauling 5 or 6 tanks everywhere and then changing the tank every hour to hour and a half was just a huge hassle and would make us just want to stay home. But now he could get by with ONE SMALL TANK for 3 hours on 2 liters. It was wonderful. Absolutely wonderful. Oh goodness - the little things in life!

There seems to be a small stomach bug/flu going around in the house though =( This has not been fun. Spencer's mom had it for 2-3 days. She's feeling better now. I haven't been feeling too well, myself.. Stomach cramps a lot and nausea.. but I haven't thrown up! Spencer, on the other hand, really caught it.

He's been sick for 4 days now with it. It hit him Tuesday, the day after we came home. He's been nauseous and having a hard time keeping down food. Running a low grade fever - about 100. But it's nothing bad. His body is a bit achey and he's been sleeping - a lot. But he has been trying to just push through it! Bless him. He has just had it rough this past year! Sickness just won't leave him ALONE!

It gets really frustrating for me, as well as him. I have to remind myself that just because he's out of the hospital doesn't mean hes uhmm... cured. I always want him to do so much, but I have to remember that we have to take it slow and we can't do all that much in one day.. But a little progress is HUGE in our book. I am proud of him.

Tomorrow we head to Kansas! I am super excited! Hopefully he'll be feeling a little bit better by then. I am so used to having to make the long 12 hour trip all by myself. Ugh so boring and I never look forward to it - but this time i am SO READY FOR IT! I can't wait! It will be so nice to have my fiance with me and our little puppy, Nacho =) The company will be great and I'm sure we'll have a fantastic time. I can't wait to see my family and show Spencer around my town - something we never have really gotten to do because he's been sick the past couple times he's been here.

That's all for now - time to go shopping for snacks for the roadddd trriiip!!! =)

-Nikki

We're looking U.P.

Ahhhhh!

This hospitalization hasn't been half as bad as I thought it would be. We've had some rough days, of course - and some REALLY rough realizations this past week; but I think it's really helped turn his thinking around. Sometimes it IS those rough moments that you need to help you.

I wasn't wrong when I thought that he was going to come into the hospital really bad. He was VERY bad. His PFTs were only 22%, down from 41% when he last left the hospital.. I mean his lung capacity had dropped over 50% - Thats scary! One of his RTs, whom is also a good friend bluntly told him that if he didn't get his act together at home he wouldn't be here another year.. Gosh that is SO hard to hear. That kind of brought him into reality. He isn't ready to die - so therefore he has to make some changes. And he is trying. Bless his soul he really is trying. And I admire him so much for that.

It may be hard to turn things around - but when Spencer's mind is in a good place he works so very hard to make it happen. It makes me proud!

The first week here was rough. He had some good vent sessions, some good cries, and a few really good talks with doctors and friends. The first week was a HUGE success because when he went in to take 1/2 way PFTs... his numbers were GREAT! He was at 36% up from 22! =) He worked SO hard to get good PFTs that day that he really wore himself out - he had to cut rehab about 10-15 min short because he just couldn't go anymore. I was very proud of him for working hard though! He really did try hard! But not being able to do a full 20-30 min of rehab really got him down. Put things into reality that he is very frail and had a lot of work to do!

But this week has been great =) He came in here on 6 liters of oxygen, and they actually had him on a mask doing about 50% which is probably like 7-ish liters of O2... yikes! But through the course of the week - he was sating BEAUTIFULLY and was able to go down to

TWO

LITERS

OF

OXYGEN!!!

This is the lowest it's been in SUCH a long time!! And his sats have continued to stay above 92% sometimes will climb up to 95% =) We haven't done a room air test yet - but I think he's going to today to just see what he's sating on room air while sitting there. Shouldn't be TOO bad!!

He's off to rehab right now - and I'm sure he's working HARD!

Spencer if you read this - I am PROUD of you. You have come such a long ways this hospitalization and you overcame some really hard obstacles and realizations. I truly admire you for your strength these 2 weeks. You've put up with a lot, yet you are coming out of it with newfound strength and hope that things are going to look up. My trust in you has grown and I hope that you can keep this up despite boundaries that you have to jump over to get to the other side. You have proved that you CAN fight this battle and come out of it with flying colors. CF doesn't have you, Spencer. The road might be long and bumpy, but you have the inner strength to pull through. You just have to fight to find that inner strength and let it shine through even in the darkest hours. I love you and I am looking forward to spending much needed time with you and your new HEALTHY self ;-)

That's all for today =) Thanks for all the support and prayers!

Upcoming hospitalization

Spencer goes into clinic tomorrow and he will be admitted into the hospital. (We say this on assumption but with the way things have been going, he's going in) It will be another two week stay, no different.

But for some reason.. I'm nervous. And I'll get to that in a second. But there has just been a lot going on this past month. Some things in which i'm keeping under wraps, so-to-speak. But it's been a very hard and looonnng month. Spencer's been struggling more than usual and it's been really hard for me to keep my sanity and patience. I keep having to tell myself that things. will. get. better. But sometimes it's just hard to stay positive. Being the fiance to a CFer comes at hardships that no other relationship will have to face - and I think we've faced most all of them this month. (With no doubts that there will be more to come!)

He's had a hard time keeping up with life. It's kind of like a never ending cycle. We're cruising a long with things going fine, and then we hit a brick wall only weeks, at most, months later and we're back to square one. This is catching up with both of us, but mostly Spence to stay positive and just keep on going no matter what. We're working with several different people to help him get better mentally, emotionally, and physically... and it's just taking so much time. Time that I have to live with.

But throughout this month he's really declined. We left the hospital with FEV1 at 41%!!!!!! That is INSANELY GREAT from what numbers he has been blowing the past year. His highest was only 36%. But they soon declined from there after leaving the hospital for various reasons. That that's so very discouraging not only to me, but to Spencer as well.

This is why I'm nervous and just REALLY not looking forward to this hospitalization....

1. I'm afraid that he's declined so much that we're not going to see numbers around 41% for a long while.. Now I could be very wrong and I pray that I am.. But it just scares me.

2. I'm tired of the hospital. We're in there every month... and it's getting old. I just want to be out of that stinkin' place for 2 or 3 months and have GOOD health.

3. I want to go to clinic just once time and him NOT be admitted and be able to go home without a worry... not be admitted like always.

4. What if it's longer than 2 weeks? we are planning a trip to Kansas 5 days after he gets out - it's important that he comes with me.. I don't think I could handle another dissapointment like that!

Idk.. it's just "the hospital". It has that ring to it in which I am becoming tired of. It just wears me out.

I want to just abandon life at home for the two weeks and stay with him there, but we have 2 animals who need care, and I know it would be nice for Spence to get some home cooked meals. There is always laundry to be done... I just can't 'live' at the hospital right now.

But then i HATE being here when he's there.. it's lonely..

But I am just going to have to suck it up... ignore all of these little pesky negative thoughts and just roll with it. Maybe this hospital stay will be a GREAT one and we'll actually have some fun.

And do some wedding planning? *cough cough* We'll see.

A date has been set!

Time to post something exciting! For anyone that follows my facebook - you will probably already know that I'm engaged =) I am SO excited about it! At first we didn't think that we could get married until after I had a REALLY good j0b as a CNA or else had a great job as a nurse. Reason being is because of insurance for Spencer. With his CF, he would have been dropped by his moms insurance - and even though he has medicaide... they pay for SO much! So we were thinking that I had to have a good enough job that would offer family coverage... Well THANKS to Obama and his health care reform... Spencer's insurance CAN'T drop his coverage =D... which means -drum roll- WE CAN GET MARRIED!! Insurance is no longer an issue. We are still looking into it to make sure that ALL of our bases are covered... but it sounds, so far, like it's a go!

So even with the insurance issue figured out... we were still going to wait a year or two due to Spencer's health and my schooling and working and loans and debt and you know.. all the "real life" stuff. Spencer wanted to make sure he was in tip top health before we tied the knot, he wanted his immediate debt payed off before we started our life together.. And I kind of wanted to be little further into school and maybe a year or two older.

But Life had to interrupt and Spencer's dad was diagnosed with a terminal, untreatable cancer.. =( And it was really important (REALLY) to Spencer (and myself) that his dad be present when we get married. So we decided to bump the date up even further.. and we went with... -drum roll-

JUNE 10th 2011!!! =) And we couldn't be more happy!! There isn't TOO much significance with that date, really. But more of our family could be here in June, after school is out.. and one of my favorite numbers is 10.. so we went with it =) Planning is a lot of fun and we're just doing the basics right now. Figuring out where we want to have it, guest list.. we want to get as much done as we can sooner rather than later and we also want to spread it out so that we won't be so stressed out! Because stress = sickness for both Spence and I.

It's about time that something good happened between the two of us! It seems like his health has taken TOP priority lately. He's been a sick dude this past year - but he seems to be doing pretty well now! I'll write another blog about that in a few days.

All-in-all - we are VERY excited and I just wanted to share!!! :D

-Nikki

Quick blog

I know I haven't written in here recently... I've just been really busy, not in the mood to blog, finally in the mood to blog but no words to type what I was feeling...

But now.. I just want to write real quickly.

Spencer is in the hospital again.. Minor setback... He was doing SO good with his lungs, and then he coughed just a little too hard which stretched out his lungs to where they leaked a little bit of air. I am SO thankful that it wasn't anything any more serious. I don't know if I would have handled that very well.

But I'm just so frustrated and upset. It just seems like it's one thing after another. Things start to go just so well - and then something random happens that sets him back.. =( He was doing SOO well!!! He was fighting some depression, but he had an appointment for it which would have started to get him back on his way emotionally. But that appt was Wednesday - he's in the hospital.. He isn't going to make it to his appt... therefore it has to be set back.. AGAIN. =/ I want to stay so positive.. I really do - but it. is. so. HARD! When things keep happening, I can't always be happy go lucky about the situation.. I just can't.

They also started him on antibiotics.. which means.. instead of staying a few days or a week until the air out of his chest went away.. we are looking at a full TWO WEEKS.... AGAIN in the hospital. Now I can't say this for certain.. they might decide he is just fine and can go home.. but with his doctor.. if he starts antibiotics.. he stays on them for two full weeks. I understand.. but it doesn't make me any less frustrated! I was hoping he'd be home soon so that we could enjoy the week I have left before my life gets CRAZY because of school starting... Guess that won't happen =/ the week before my life is back to the old grind and we're spending it in the hospital.. fun stuff, let me tell you..... U.G.H!!!!!!!!!!!!!!!!!

Buuuuut....... I'm trying my best to be positive. To think positive.

Positive Thoughts:

Spencer has improved

His doctors are starting to believe he is being more compliant

He was doing SO good at keeping up with meds and treatments

He made me proud

This 'set back' wasn't serious

This didn't threaten his life like the 3 times last year

He is going to be okay

He's still the same ol' Spencer!

He has a chance to improve in the hospital even more to get beyond his "normal"

I think that's a pretty good list.... now only if my mind would STAY on that LIST!!!!

I guess this wasn't as 'quick' as I thought it'd be.. I just got to typing and couldn't stop... eeesh!

Living Life = Getting Sick

And with my last blog post about an amazingly fantastic day... came over a week of concentrating on feeling better in the hospital.

Spence got himself pretty sick - from my understanding with a talk I had with his doctor... He was sicker than he's been in a long time!

All because he was living his life. Just trying to live and be with family.

We were with family a couple weeks ago and we all went swimming. As I posted before - Spencer got in the water for the first time in 4 or 5 years. He had a blast... but made himself really sick. He wasn't very careful about his oxygen tubing in the water and didn't change it out right away - so therefore he ended up giving himself another lung infection because of all the germs in the water. Frustrating! he expressed to me how upset he was by just saying that all he was trying to do is be with family and live life - unaccording to CF. I mean; who can blame him?!

He was trying to do everything at home possible to stay out of the hospital.. but as time went by - the infection just got worse and the poor guy couldn't breathe. Man it is so hard and heart breaking to watch someone you love gasping for air and struggling to breathe. What we take for granted he has to concentrate on every second of every day.... and it sucks.

He was going to try to wait to go in on the 6th when he had his next clinic appt. But he ended up having me take him into the ER on Sunday due to lack of energy and not being able to catch his breath. Blood tests showed that he was really sick and they admitted him.

Usually he sleeps the first 2 days.. gets the antibiotic blues (nauseous while adjusting to them) for 2 to 3 days.. and then feels so so much better. This time it took about a full week for him to even start to get to feeling better.. and he still has no appetite.

But here's the strange thing...

He went in with a super bad infection - yet they are thinking about discharging him on Monday (the week mark) instead of the two week mark.. uhmm what?!

Here's the thing.. He's been doing extremely well lung wise lately! I couldn't be more shocked! I haven't ever seen him improve and bounce back this quick!

On Friday he went down a full 2 liters of oxygen in a matter of a day.. from 5 liters to 3. amazing. Last time he was in the hospital he was on 8 to 10 liters while exercising... this time.. he only has to be on 5 to 6 liters. how. The RTs are saying his lungs sound fantastic and that he's doing so well. It was the PA who told him that he would go home Monday, if his PFTs were up... so who knows if the doctor will let that slide or not...

His PFTs when he went in were at 30.. a typical number for him upon admit..

His normal range is around 40... I really hope when he does PFTs on Monday they are excellent!

The thing I question is... even if he is so much better at the week mark... is there a chance that he can improve above and beyond what his average is if he stays 2 weeks?? He wonders the same thing.

I would love nothing more than for Spence to get to come home on Monday... but I would rather him work to get beyond his normal... The hospital is the best place for that to happen. I want him to stay out of there longer this time. I want him to be able to live his summer!

So he's going to question the doctors on Monday to see if maybe it would just be best if he stay for 2 weeks...

Guess that's all for now.. I have more to write but this is getting lengthy and I would be switching subjects anyway... So I'll save it for a different blog..

Praying that Spence can achieve maximum health this hospital stay!!!

Amazingly Fantastic Day

Wow - what. a. day. I think this has been one of the best day's I have had in awhile. Not just for myself.. but to see other people happy. The whole crew (Riddle's) made today a hang out day. We went swimming for a few hours and then went in to play Settlers. Spent most of the time talking - was fun!

I think the biggest highlight for me was Spencer getting in the water. Wow - I've never seen him in there before. It's been well over 4 years for him. Because he's on oxygen we haven't ever been swimming together. But since it was in an apartment complex swimming pool, He hooked up his super long tubing and got in the water for an hour or so. and it was AMAZING. :) It just light up my heart seeing him finally screwing off his CF and just doing what he wanted to do. SUCH a good feeling. He had so much energy today and was so active. I couldn't be prouder and more happy about how today went!!!

The one down thing about today - I realized that I seriously need to get in to see a GI. =/ I've really been neglecting my health more than I should be. It all started with me getting minor stomach cramps after I ate.. That continued to get a little better over time. But depending on what I ate - I'd feel sick. My bleeding came back, bright red, so I know that it is from my lower colon/anal/rectum area and it's also gotten worse. At first it was just here and there, but It's becoming a slow, steady bleed which is concerning me. My stomach has been feeling okay - but I've been more tired lately with less energy. So I'm wondering if my iron/hemoglobin count is falling a bit. It's been so long since I've been worried about the turn my health is taking and I'm starting to get really frustrated with myself because I haven't listened to my body.

I am 2 years over-due with scopes.. Which scares me too. When I was scoped a little over 2 years ago I got news that I was very inflamed in my colon and I had developed pseudo-polyps. The plan was to get scoped once a year to remove polyps should they develop, and if not - just keep an eye on what's going on. Also since I've had Crohn's for over 8 years - I am at a very increased chance to get colon cancer so I should be screened at least once a year. They also found a stricture somewhere down there and so I need to have that watched to.. Just build up of scar tissue... =/ I have neglected this big time and I'm just scared to get another one. But it's time... It's just that time.

I've also been off all my meds because nothing has worked. I either react to them all or they just simply have no effect. I was last on asacol and Humira. The Asacol didn't seem to do a thing and I reacted to the Humira (site reaction/hives) So I stopped that. Also my insurance ran out (kids, on my moms) and so we couldn't really afford anything.. so i've been taking the bare minimum. Nothing for my Crohn's. I need to figure out a med combination because it's really bad to be off all meds. With Crohn's, it's auto-immune so the inflammation just keeps comming (most of the time) and so you have to have somethingg to suppress it. ya.... Nothing has been suppressing mine - I'm scared to see if anything is even getting through down there... (which ya, i've been really constipated.. yikes.. with the stricture being there, that might not be good.)

So I guess tomorrow I'm going to be calling the GI clinic here in Salt Lake to see a brand new GI.. Wish me luck.. I HATE HATE HATE switching doctors.. it's stressful and a bit scary.. ugh. Not looking forward to it.. but this has just been a blunt reminder that I do have a chronic disease and it gets worse before it gets better...

-Nikki

Spencer found this poem this evening.. And I thought that I would share it. It is an AMAZING poem. It instantly made us think of Conner and his family. Breathe Easy little guy. We love you and you will forever be in our hearts.

God saw you getting tired

A cure was not to be,

So He put his arms around you

And whispered “Come with Me…”

With tearful eyes I watched you

and saw you fade away.

Although I loved you dearly,

I could not make you stay.

Many times I've thought of you,

many times I've cried,

If love alone could save you,

you never would have died.

A golden heart stopped beating,

your tender hands at rest,

God took you home to prove to us,

He only takes the best

Breathe Easy

Little Conner earned his wings last night. It just breaks my heart. How can such a little guy so full of life lose his fight to Cystic Fibrosis. -sigh- I hate CF. It's just not fair. I hate it so much.
He was in a lot of pain. He was suffering last night. But now his lungs are full of life. He can BREATHE. That is the most relieving thought. He can breathe and go run around like any little 7 year old can. He's not in pain, he isn't struggling to stay awake. He's Conner.. just simply, Conner.

On another note... I follow the Groettum Family's blog and she has a photo challenge every Friday that I want to start doing :) Rules are that you don't edit any of your pictures and everything is like it is. You take pictures per her request and share them with fellow bloggers. I enjoy taking pics and so I think starting next Friday I'll attempt to do it! Yay!!

-Nikki

Heartbreak

I know almost everyone has heard the story about little 7 year old Conner and his fight against Cystic Fibrosis. I've been keeping a close eye on Sarah's blog and it just sounds like Conner is losing his fight to CF.. it's heartbreaking.

How can a little guy so helpless be cursed with this disease with no chance of living a full life.. I'm sad. My heartbreaks. My anger shows. My frustration breaks loose... =/ I so badly just want him to be able to live to see his next birthday... to spend more time with his family. But I know he's in severe pain and he desperately needs to escape it. My prayers are with him to be pain free and to not be scared. And my prayers are with his mom, dad, brothers. Just so they can get through this rough time with their first born son.

Along with this.. my heart breaks for other reasons.... It makes me realize how brutal CF is and can be. It doesn't matter who you are, how special you are.... it takes you and it's just not fair. What is happening to Conner right now, is going to happen to my best friends some day.. And I know it's going to happen to my best friend and my love, Spencer one day too. and it's hard to grasp. I know we don't have to worry about that moment for years (at least I pray) and that we can enjoy the life we have right now. But to think that he is going to be in that position one day killlls me. I am going to have to go through the loss of my husband and that is a hard concept to understand. I try not to think about it - and I'm trying to divert my thoughts elsewhere right now... But seeing little Conner and his family and how they are struggling to get through the day - it makes me wonder what it's going to be like when we get to that point.... yeaars from now.

But for now.. we fight and we fight and we fight some more. And we love and we conquer and we live. We live our life. Live and breath to the best of our ability in the present. We can't live in the past or the future. We have to live in the present and enjoy our current life.

Live and breathe....

and love, love, love

<3>

Wishing to go home....

These past two weeks have been probably 2 of the hardest weeks in awhile. Not physically, but just mentally and emotionally.

As some of you may know, this all started out, basically, when Spencer was discharged from the hospital the last time (June 1st). Last hospital stay he coughed up a little bit of blood, that stopped, but then he got a "cold" of some sort. They let him out, (shouldn't have, we come to find out) and he went home feeling pretty crummy. The bleeding came back little by little. Things were going 'okay' until the news of Spencer's dad hit him hard. He found out his dad has a serious and aggressive stage 4 cancer. This got Spence pretty down (which I don't blame him one bit) and just made things spiral downwards little by little. We were finally told that because the bleeding wouldn't stop that he needed to go to the ER to be seen... so we did.. and here we are again in the hospital.

This is the part that frustrates the heck out of me. We're back in the hospital - basically because his doctors didn't pay enough attention when they went to discharge him last time. They should have looked further into it. We found out that, most likely, the reason he was bleeding from his lungs was being he got a lung infection which caused some inflammation. When I get to thinking about this, the lung infection probably started the last 4 days he was in the hospital last stay... if they would have kept him just a little longer the last time - we wouldn't be here right now.. So i'm basically saying; I believe this could have been prevented =/

So when he first got admitted in here this time, they told him it was just for observation. They didn't see him staying in for 2 weeks because he looked good, his lungs actually sounded very good, and they thought things would turn around quickly and he could be out of here. Then we got word from the doctor a couple days after the admit that this was probably due to a lung infection and that they were going to start him on antibiotics to kill the infection and reduce inflammation. She was staying that this stay needed to be at least 10 days long so that they could get the infection and so that he wouldn't build up a resistance to the antibiotics. Frustrating, but understandable, right?

So we go for a few days.. thinking that he would be able to go see his father soon, and get back to school this coming Monday - things were looking good!! His oxygen needs went from 6 liters to 3 liters and they were saying his lungs sounds excellent. They said that he would do PFTs to see where they are and then they would consider letting him go home! YAY good PFTs and we're home right?!!! WRONG! They didn't even schedule the PFTs. =/ He was supposed to have them Tuesday, but he doesn't have them until Tomorrow!!! (Friday) Okay.. so Friday we do PFTs, they should be really good (considering how everything else is going) and we will go home!!! Just in time for father's day with his Dad, School for the week, and a nice family reunion next Thursday...

.....Maybe.... now they are telling us he needs to stay in for a full 2 weeks!!!!!! Now let me tell you - I am frustrated beyond all belief. Come onnn.

Please tell me why you would tell us that we need to be in here for 2 weeks when you previously said the following:

1) this is just an observation stay to make sure the bleeding doesn't get worse
2) we need to start you on antibiotics but we will try to get you out of here in 10 days

3) you sound excellent

4) he met his oxygen goal (to get down to 3 liters) ((and he's been satting very well))

5) he JUST got out of the hospital

6) he feels better than he has in a long time (aside from depression from all of this crap)

The PA is on our side... He doesn't feel like there is a need to stay in for a full two weeks... but the doctor isn't budging... I am so SICK of being pulled in two different directions. the PA has talked to the doctor time after time... and Spencer was supposed to see her several times, and we were told that she was going to come in today... never did... then the PA called Spencer and said that she was going to call here shortly so we should stay by the phone.... nope, that was 2 hours ago... never did.

WHY CAN'T WE GET AN ANSWER?!?!

I mean.. I understand that if there is a very legit and good reason why she is keeping him here - that it be important to stay 2 weeks... but she won't even talk to us.. We haven't been given a solid reason. Right now, as it is, it seems like we're just here.... to be here...

He has made the comment... and the point clear... that it is VERY important to Spencer to be out for father's day.. this could very well be the last fathers day he gets to spend with his dad. Not to mention that he wants to spend AS MUCH TIME with his dad as he can... He needs to..

Not only father's day.. but he JUST started school. We were just getting life on track. it's so so important that he can be in school as much as possible..

And then last, but certainly not least, There is a big big family reunion this weekend that we have been looking forward to... they don't come very often and he REALLY would like to see his family (who he never ever gets to see)...

-sigh- I just want an answer. I want the doctor to stop ignoring us... I want him home. He is getting so frustrated and it's really brining down his spirits.. His mood is slipping, depression seems to be increasing.... can they not see this? =/

I almost feel like there is something here that we are not being told..... regardless - I WANT TO KNOW!

I know this might seem like a minor problem to some of you.. specially those who don't know the full story... We're tired of the hospital... he was admitted 16 times last year.. we want to start LIFE..... and this is not at all helping..

Please pray that we can at least get answers... if not go home - at least understand WHY I can't take him home...

I've desperately been needing to vent... It helps.. but just not enough.. I need all the support I can get!!!!!

-Nikki

breaking points

You know those moments where you just feel like you can't hold it together anymore? When you feel so overwhelmed at life... You just don't know what to do next, heck even where to start. You just can't understand exactly why all of a sudden you are feeling this way and why you can't just ignore it.. -sigh-

I'm at that point... a breaking point and I don't like it at all. I guess I should have known it was coming - but it seems like it just hit so suddenly I don't know what to do with myself.

I'm angry. I'm sad. I'm frustrated. I'm lonely at times.

There are just so many things running through my mind... I can't get it to stop. I just don't know how. I feel like I don't have the strength anymore - and thats scary to me. I've always been this super Nikki type of person who did it all. Without complaining. Putting everyone first. Not careing about me, but loveing and careing about everyone around me. I have been the most selfless person..

But now... I want to be selfish.

I want to be the one who everyone loves and cares about. Who would drop anything to help me out when I'm needing it most....

I don't know what to think... I just want this to all pass over and go on with the way things are supposed to be... I just needed to vent..

I feel lost... =/

Poem by a Fibro (2)

Breathe Easy

Every single breath we take,

A gift from God, which we partake.

We live our lives without a care,

Not even thinking, we suck in air.

The air goes in, our lungs it fills

Into our red blood cells the oxygen spills.

It flows out, each part it graces

From our toes, up to our faces.

The other cells take in that gas.

From cell to cell, none will pass.

It helps them grow, it helps them fight,

It gives them power, it gives them might.

But what perchance, should the lungs fail?

Is that a cause to sprawl and wail?

There is a preciousness with each breath

For without, it’s certain death.

There are some born with a disease

Their genes are missing certain keys.

They lose their lungs but not their heart

Striving to live from the start

They seem to grow beyond their years

With their lives so full of fears

They grow and learn, among us all

The hacking cough as their call

They learn to live, tho they’ll die

To live their best they do try

Weeks in hospitals, days spent sick

Most of them as skinny as a stick.

Doing treatments, having fun

Sitting outside, time in the sun

Taking handfuls of pills every day

So to live, their bodies may

Years go on, health declines

After doing things of all kinds

Constant infections do their deed

At times, the lungs, crack and bleed.

In the lungs, scar tissue fills

Mucus clogs, together, it kills

And so the body loses life,

The spirit leaves, its earthly strife

It enters through the heavenly gate

To receive its well earned estate.

There they wait for all of us.

We needn’t make a fuss.

For we will see them once more

Sitting with God upon the floor.

A Fibros Poem

So at 1:00 AM, Spencer decided to whip out his computer and write a poem. Now if you've ever read one of his poems, you could have many different emotions such as: laugher, sadness, pain, empathy... etc.

I get excited when he writes. He has such a way with words. He can really put his emotions into words in a special way. He's written me a couple poems and I love them. Usually he writes about his CF and his long battle with it. The poetry is amazing. I believe that one time his poem was featured on a website. :)

I want to share with you a poem a week.. for your laughter, inspiration, and empathy. A lot of these are expressing his true feelings and I hope that you will be touched in some way by them :)

All of my CF friends and caregivers know what it's like to do treatments every day... this one is kind of funny about missing a treatment... He wrote this several years ago. ENJOY!! :) Leave your comments if you'd like!!!

Treatment or Two

Oh crap! What do I do?

I forgot to do a treatment or two.

I'm going to the doctors later today;

I wonder what they're gonna say.

I could always tell them that I'm dying,

But then they'd think my brain is frying.

OH CRAP!!! What do I do!?

I forgot to do a treatment or two.

I didn't wake up until 6:30,

I didn't shower, I'm still dirty!!

There wasn't enough time to do my vest,

The doctors just won't be happy without my best.

Oh crap........what do I do?

I forgot to do a treatment or two.

From now on no more sleeping late!

That just might change my fate.

Their gonna make such a fuss,

And bite their tongues as not to cuss.

Oh crap what do I do.........?

I forgot to do a treatment or two.....

Well, it’s more like fifteen or eight,

But who's counting, it's too late.....

Death and Time.. and CF

There is no fancy way to say it... no sugar coated way to put it... but I wish there was... I wish there was an easier way to think of it... to know everything happens for a reason.. But there isn't.

Death scares me. It scares me now more than ever. I have been forced to see death in a whole different light - and it's upsetting, aggravating, frustrating, and devastating to think about all at the same time..

I never thought that I would have to put death into my reality so early in my life. But lately - it's been the only thing I can think about. Everything is a matter of time to me now. Everything is in years... It shouldn't be... I know it will get better - I'm just trying to grasp... death... dieing... passing away...

Death and cystic fibrosis never clicked with me until a month ago. I didn't realize the reality of it all. I thought... psssh he will be the exception. He will be the one guy that lives in to the 70s or 80s with CF.. We can fix it all and it will all be normal... ok... fine...

But it's not true... at all. It's all very real. He is going to die eventually and I hate it. I'm scared and frustrated and tired of thinking about it. I never know when that day will come... It shouldn't come in a long time... but how do we know?

Why do the most deserving people have the most devastating problems.. It's not fair. I hate it.. I'm pissed off. I want my love, my best friend, to live a long life. To be able to do the things he once did. It all just seems to be going in a downward spiral. Things get worse... We take a couple steps forward and then more than a couple steps back. Make no progress. Can progress happen? will it happen? Who's to say?

I just need to accept death. But how? How do I deal with the thought that my future husband is going to leave me and his family and friends behind well before any of us are ready. How can I live with knowing that I have a limited amount of time with this wonderful man? How do I stop counting years.. and just live every day to the fullest?

I mean... I do my best to cherish every single day.. Trust me - I do.. and usually I do a pretty good job at all. I can make the best out of the day.. But if I stop and give myself time to think about it (usually in the evenings.. or when he's sick) I start thinking about time... time time time.... I want to stop putting everything into years!!!! We don't know that we have 3 years or 30 years together.. and we can't know that..

-sigh- No one should have to go through this... Especially so young... not the CFer and not the care team. It's hard. Unfair. And I absolutely hate it.

Time. Time. Time.

Hectic life!

Wow things have been so crazy lately. Seems like I never catch a break. I want to get better about writing blogs - but it seems like every time i think about it I always think of something I should be getting done.

Recent News:
Spoke at the annual Starlight Children's Foundation Gala/fund raiser in LA
Traveled to LA, to Sand Diego, to Kansas, then back to SLC for Spring break
Got ENGAGED! <3
Finished two huge papers and got A's on them both =)

Will write more later - for now, I have to get to class!
Toodles~

Emotionally rough day =/

You know those days where you just want to put life on hold, just make it stop? Thats kind of where I'm at right now.

I realize that things do get better - and it's just a short bump, but at the time it feels like things don't get better, ya know? I think a lot of it comes along with being in college - everyone in college experiences days like I am having right now.

You know, you feel completely overwhelmed, you have a 10-15 page paper do, huge test coming up, all at the same time having midterms to prepare for... and it all hits at once - no matter if you start early or not. All this is going on right now for me and i'm most definitely stressed.

See this paper I'm writing is making me to a lot of thinking. I'm supposed to be analyzing my gender role journey throughout my life. It's hard - lol. You think talking about yourself would be rather easy, but not so much for me. When your identity is being built this happens around junior high and beginning of high school. It's when you join into groups, make a lot of friends, have cliques, figure out where you belong, who you are. I realize that I am still doing some of that now - probably more than anyone else. During those crucial years - I missed out. I missed out because... I was sick. I missed most all of those years. I was at home sick. 4 hours away from home, in the hospital sick. I didn't get to construct who I was back then. I didn't get that chance. All I thought about was why me, when will I get better, is this blood test going to show I'm not getting better? I didn't have time to think about who I was, what my gender role was. I didn't get to explore myself. My parents didn't have to set certain rules, monitor the friends I hung out with... There were no rules to set, no boundaries to follow, or break. I didn't have friends... My parents didn't have to worry.

This is a chapter in my life in which I thought I closed the book and had closure with. I thought that it was just something that I wouldn't have to really analyze... I can talk about it with people, share things that happened... but when it comes back to remembering everything I missed and didn't have... Every opportunity I didn't get... It really hurts.

I didn't realize this paper was going to effect me so much emotionally. I am really struggling with it. Even though this all started 9 years ago - I am not at all ready to re-live everything I went though. It was a VERY rough time for me and I am struggling at looking back... It's a very raw subject.

I know this paper will make me stronger in the end.. I will be forced to think about things that hurt.. and sometimes that is what you need. My life in general has made me a stronger person, and this is just another chapter and point that will help me along the way.

Living with a disease....

So I just feel the need to talk about living with a disease. I think this goes for about any chronic illness. But living specifically with IBD, specifically, Crohn's Disease.

I'm not going to talk much about it right now - but that's probably going to be a majority of my posts over the next week-ish =) It's something that has been greatly affecting me lately, and I want to express my thoughts down on paper, or well, a keyboard haha

Since I've been in college, living in a dorm, and having a room mate, new things have come up that I never once thought about before. I mean I've heard all about it, but until now, I never had to deal with any of it... Hopefully with writing my thoughts down, I can pinpoint what I need to work on to overcome some of the struggles I've been facing.

<3 Nikki.

Big Step!

Wow! Spencer and I went apartment hunting on Friday - with SUCCESS!!! Ya! I am so very excited! We've looked at two places so far. The first one was kind of a let down. We walked away with thoughts such as "I guess it's okay. We could probably live there if we had to. But we definitely want to keep looking." So we went back to Spencer's and searched some more online and one apartment complex struck us so we went to check it out.... and fell in LOVE with it. It is the most wonderful place a person could imagine - for it being the very first apartment or home.

The rooms are plenty big, it is in our price range, the area is perfect, great hospitals nearby (like we're talking about top-notch!). It's 743 square feet, and is so much bigger than we expected. There is no way we can pass this place up. The value is very much worth it.

Soooo. We are putting down a deposit on Friday!!! =D We get half off the deposit and 30 bucks off of monthly price if we secure a spot now - so we're doing it. We've thought it over, and it's worth it.

Now we won't be moving in until, most likely, September. Which seems FOREVER away. But just the thought of improving things is such a motivation! =) I know Spencer is absolutely thrilled about it. He is also pretty nervous, but I would be too in his situation. Heck I am a little nervous, anyway! He's nervous about it just for the fact that with the CF it makes things harder, paying and being responsible for everything... Ya know.. things like that. But the way things are going in his home life right now - something has to change. And this is it!!!

The only thing I'm really eh about, and kind of angry about, is the judgments I'm getting from people. You know... moving in before marriage and such. Specially in an LDS community. It's seriously looked down upon. Don't get us wrong though, if we had it our way and certain things didn't come in the way.. we WANT to wait until we are married to get a place and live together. We'd rather be looking when we're married. But there just isn't a way that is possible if we want to keep Spencer's health in good condition, and this is really going to help my health and life too. Dorm life isn't great for a Crohnie.

I just don't appreciate how people draw conclusions, judgments, and assumptions when they don't know the full situation. It REALLY bothers me. They just see it as, an unmarried couple living together. They don't see the fact that Spencer's life, basically, depends on this, and with his Cystic Fibrosis we need to make decisions based around what is best for him and our relationship. Oh well... I guess people are people, ya know. =/ Nothing's going to change. At least we know the real and full reason this is happening.

I am just so excited that I couldn't wait to write it all down. It's such a huge step!!!!! And the improvement thats going to come out of it should be GREAT. I can't wait to basically, start over and live the life both Spencer and I have been wanting... without the stress of CF, home life, dorm life, family life... you name it, it's there. His family falls perfectly into Murphy's law - What can go wrong, will go wrong.

We're going to change that ;-)

<3 Nikki