Thursday, September 29, 2011

Pictures of the day...

We got to see the therapy dog, Carlos today! Spencer and Carlos go way back and love each other so much!!! It always lifts Spencer's spritis up significantly when Carlos comes to visit!!!!

Wednesday, September 28, 2011


I just feel numb. I have been through a roller coaster of emotions this last week and I'm ready to jump off. I can't even thank straight. When I think something is starting to improve, I find another hurdle I have to jump over - this one higher than the last. It's so hard. I don't feel like I can even function anymore. Even the every day tasks are becoming a huge chore and oh-so hard to accomplish. I've been at this 10 days and I'm ready to be done.. but alas... we have a long road ahead. There is no telling when Spencer might get to come home.. but I know it's going to be awhile. He's still not up to par. They think they can remove the chest tube soon - but he's still having multiple problems.

For reasons I really don't wish to discuss publicly (and I do hope that you can respect me for keeping this private) - tonight was the worse night I've had in a very, very long time. I thought last Monday was bad when everything first happened - but tonight nearly tops it. It's been EXTREMELY emotional for me and I can't even wrap my mind around it.
I guess this is why I'm feeling numb.
I've cried so, so many tears... I've been so angry... so hurt. I'm mad at God... I'm mad at our situation. I'm upset at how some things are playing out. I'm sad - Goodness I am sad, I can't even describe. I want to cry.. I want to scream out... but I just can't. I have nothing left. I'm numb. I'll be on the verge of tears... creeping up in my eyes, and just when i'm ready to let it all out it stops... It goes away. I just need to cry in my house.. where no one can see me. Where I can just let it all lose - cry as loud, long, and hard as I want. But I can't - it just won't come.

I got this quote from a fellow CF Wife and I think it fits perfectly right now:
"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief.... and unspeakable love." - Washington Irving

I'm just overwhelmed with emotion tonight and I just feel like there are a million strings ripping at my heart. I feel torn into so many different pieces that can't be put back together.

When people ask how I'm doing... for some reason I still can't allow myself to tell them that I'm not ok. =/ I don't know why - every time I try I just stop and correct myself... tell them that things are getting better and I'm getting through everything better than the previous day - But i'm really not. How long is it going to take me to finally tell people the TRUTH.. I don't think I ever will.

I just needed to vent. It's been a rough night... a rough week. This isn't anywhere near coming to an end.. and I just need a little peace in my life... >.< I want to feel - I just don't want to feel every single emotion there is to feel, you know? It will happen - just not soon enough....

Tuesday, September 27, 2011

Photo of the Day

I need to somehow keep my sanity... I've been taking a few pictures every day of Spencer and/or myself... and so I've decided that when I need some down time or when I get too bored I will upload a photo that describes our day here in the ICU/hospital...

These pics are perfect for today....
Spencer is just sooo drowsy. he sits up and after a few minutes falls back asleep sitting up... or rests his head on the bed table and is out. Poor guy. hopefully he doesn't need too much more pain medication!!!!

As for me... well the precautions just SUCK! Since Spencer has multiresistant pseudomonas in the ICU they make VERYONE who goes in the room wear PPE (gown, gloves, mask) so that you don't get other patients sick. It sucks. On AIM B they don't make the visitors wear the PPE but in the ICU their pretty anal about it... Boooo. So Here I am... sporting this hot look... Cheating when the nurses aren't looking and taking the mask off ;-) I'm sure they know; just as long as they don't say anything about it ;-)

Friday, September 23, 2011

I am so dang happy tonight. I just want to tell the WORLD! And I can't seem to stop talking about it.

I came up to the hospital about 6:00 tonight and Spencer wasn't responding. They said that he had improved a LITTLE today but not too much. I was bummed because he was off of the propofol but still super super drugged up and not able to communicate. So at shift change I went down, grabbed some food and hoped that maybe when I got up there he'd be able to be a little alert. Boy he was much more alert than I EVER expected to see him!!! =D I got in there and he was trying to tell the RT what he needed. I was so socked to see his eyes wide open and him pointing and various things. I hurried as quickly as I could to get gowned up and try to help figure out what was going on. We never were able to figure out what he needed. We tired to get him to write something but he wasn't able to grip the marker and find the coordination to write. But I think we got him comfortable. I talked to him and let him know what exactly had been going on since we was admitted. I called my mom because I was just so happy and excited and put her on speaker phone so that she could say some encouraging words to him! He teared up and really appreciated it.

I stayed with him for 2.5 hours and he was awake the whole time. His pain started to get pretty bad around 10:30 and so they gave him some more pain meds which put him out for the night and so I left around 11. He squeezed my hand a whole bunch and i just talked to him as much as I could. It was just soooo good to see him awake. He couldn't stop looking at me. He actually smiled a couple times the best that he could which was great to see.

He SO badly wanted the restraints off but no one wanted to do that for fear of him pulling at tubes. I could have persuaded them to do it since I was right there but I didn't want to chance another set back. He actually flipped me off because I wouldn't do it myself... hahaha I got angry with him because I was trying everything to help him out..but it's ok - kinda makes me giggle now. He also was trying to get us to take the breathing tube out. I told him that maybbbbe tomorrow he could get it out. He shook his head like crazy and I asked him if he wanted it out tonight and he said yes. lol I had to calm him down because he REALLY was not happy. But I finally was able to explain how important it was that it was in and what happened when he pulled it out a couple days ago. Finally got him convinced that he just needs to get through tonight and that tomorrow will be a better day.

Promised him that i'd be there in the morning to talk to the doctors and figure out a short term plan and see if it'd be possible to get the tube out. I have no idea if he can get it out - but if he can't I want the doctor to tell him exactly why instead of just telling me or not saying anything at all.

I'm just happy. And I'm really hoping this is the weekend that he can get that breathing tube out!!! I hope that tonight goes well for him and he's able to make it through ok with out any problems.
Tomorrow will be a good day =)

I don't care how negative this might sound... I don't even care if it makes sense. I don't care if anyone is offended. I apologize in advance and you all have to realize that I am strung VERY thin right now and I'm struggling to keep it together. So just bear with me and hold nothing against me. I just have to get my feelings and raw emotions out... whether it sounds mean or not... It's not good or healthy for me to keep everything in.....
And now I begin.

I am REALLY struggling today. I think this is the worse day I've had so far. I have no idea how Spencer is doing today and for that I feel terrible. I can't get up the strength and the courage to get ready to head up to the hospital and see him. I can't even get the courage to call them and ask how he is doing. I am so scared that they are either going to tell me that something has gotten worse.. or I'm just worried that all they are going to say is "well he's doing okay... there hasn't been much change".... I WANT change and I NEED change to happen! POSITIVE please. I am sick of hearing that everything is the same and we just have to wait. I am being SO impatient. I want things to improve!!!!! But again - I just feel really bad that I haven't been up there or called to see how he is... I just don't want to hear it if it is said that there has been anything but improvement!!!

Something that has been bothering me is that everyone is asking "Well is there anything that I can do for you... what can we do?" really people? I am glad that people are asking how I am... but I feel obligated to tell you that I am doing just fine with everything because I HATE the question... what can I do for you? If I knew what you could do for me I'd tell you.. I'd let you know. I honestly don't know what you can do for me. I don't know what I can do for myself. I don't even know that there IS anything you can do for me.. because I just struggling with seeing Spencer like this.... what can you do about that?! If you really want to help me out... then offer to do something specific... Ask if you can take me to dinner that night... ask if you can sit with me for awhile... ask me if you can take me anywhere or get me something from the store. Offer me help with Nacho or help with gas because it's so effing expensive to drive back and forth every day.
I'm not trying to be rude... I'm not. Because I know people just want to help.. I get that. And I'm VERY thankful... but I DON'T KNOW WHAT I NEED. I'm having to have people TELL me what I need... So please. Continue to ask how I am... that helps me... but please don't ask me what you can do for me.. because I just don't know.

Also.. i'm sick of people asking me for updates. I know you all care.. I get that too. But I am posting everything publicly that I feel comfortable posting. It gets EXHAUSTING telling 100 different people that there IS NOTHING NEW or the same thing that I have just written about or told 3 different people about. I'm sorry if I'm not messaging and contacting everyone about Spencer's condition... Really.. I am.. But I can't contact 500 people personally. I'm having problems dealing with this all myself.... I can't help 500 other people deal with it too. It hurts me to constantly say that nothing has changed and then having people feeling disappointed and saying they are sorry... OK your sorry - what do I say to that? It's ok??... because I have news... ITS NOT OKAY. This whole situation isn't ok!!!! I'm not ok!!!!
People... I will post every update that I have. Every single time I see Spencer.. and every single time I get word from the docs and nurses. I update his condition. Please do not IM me asking for an update. Because I don't know anything new or nothing has changed. I don't feel like I need to post EVERYTHING online... I feel like it's useless to post on his caring bridge when I get the SAME news from the nurse that I got 2 hours ago.
I'm glad you all care - don't get me wrong.. and I'm thankful we have so many people caring... But please.. Just spare me from having to type it up a million times.

If you want an update.. please go to this website:

I update it when I can... pretty often too. Check there first before you ask me.

Again.. I'm sorry if your offended by anything. All I'm asking is that you just continue the prayers, the thoughts... and PLEASE keep posting encouraging words... They really do help. I am NOT ungrateful for ANYTHING.. Please don't take that the wrong way. The last thing I want is for people to abandon me/us because of this blog post. I just really needed to vent... I am thankful for EVERYTHING. I'm just frustrated. SO freaking tired emotionally and mentally.. and even physically even though I've been getting more than enough sleep...

Thursday, September 22, 2011

Thankful Thursday...

Amongst all of the chaos that has been our lives these past 3 days I wanted to reflect on some positive things. It's been a VERY hard time for me and over all I think I have held it together pretty well. Of course I have my moments and last night was one of them. I feel like for all the negativity that I reflected I should take a moment to think about what I am grateful for with this situation.

* I am thankful for the VERY quick response that we had on Monday in treating Spencer. He was in very, very bad shape but when we got to clinic the doctors, RTs, nurses, coordinators immediately jumped into action. It was a scary day but if it wouldn't have been for their quick response and excellent calls Spencer wouldn't have made it.

* I'm OVERLY thankful for all the love and support that I have surrounding me. I just cannot even begin to express the gratitude that I feel towards everyone. I have been absolutely overwhelmed with all the kind words, thoughts, prayers that we have been receiving. We feel them, friends. If it wasn't for prayers Spencer wouldn't have made it through Monday night, as things were very serious.
I do want to take a moment to at least attempt to express my thanks to everyone. And please know that I can never, ever fully express just how grateful I am... You guys jumped into action with the thoughts and prayers right away. I logged onto my email and facebook and they were just exploding with notifications and messages. I didn't realize until later just how many people had taken the time to post our situation as their own statuses and trying to recruit even more thoughts and prayers. We have people supporting us who we don't even know and who don't even know us. I am just overwhelmed. Thank you all - from the bottom of my heart.

* I am SO thankful for my friend, Christine. I feel it's appropriate to give her the biggest shout out I can!!!! Not having any family here myself is very hard. I have struggled to find a support system for myself; but I have finally found it through many friends who truly understand what I go through. Christine dropped everything to be with me up at the hospital on Monday when this all started. She sat with me through everything and made sure that I had what I needed, even if I didn't know what I needed myself. When I got the news that spencer might not make it through the night - she was there to comfort me and she stayed so strong. She has been my rock through all of this. She was kind enough to offer her house to me to sleep in that evening so that I could be close should something happen.
Christine, I am so thankful to have you in my life. You're the definition of a true friend and I'm so glad we met. I hate the circumstances in which we know each other (Damn CF) but I couldn't have asked for a better friend to help me through this journey. You mean so much to me and I can never thank you enough for all that you've done. I cannot wait for our friendship to grow and blossom. We relate on more levels than one... more levels than most friends would. I look up to you as you've been through many of the same things with your relationship, your quest to find the truth and more. I cherish our friendship and I hold it very, very close to my heart. Please know that if you EVER, and I really mean EVER, need anything at all - I am just a phone call away. I would be there for you in a heart beat. Together we can get through all these obstacles that life throws at us and I'm so glad I have you by my side to battle!!!

I will leave it at that and write more later - as I need to take some time to actually look at some of this homework that has been piling up.

But I leave you with this:

Friends and family... please hold your loved ones close. Do not go to bed angry... do not waste the day away. Cherish every single moment that you have together - because honestly, you never know when a life changing event might threaten your time with one another. And please - If you love someone... tell them. Don't just assume that they know. Tell them and SHOW them every chance you get how much they mean to you. LIVE your life and love every moment that you have to live in it. You were given only one life here on Earth and do everything in your power to enjoy it. Hug those you love as often as you can... cherish the small moments together - as they turn into something much bigger.

I love you all and I thank you for reading this....

Sunday, September 18, 2011

It's just how it is....

I just need to let off some steam. I've been trying to hold things in and keep quite but I'm just fed up this morning.

I despise CF. I hate everything that it is. I hate that it affects my husband just when we think things are starting to get a little bit better. I hate how it is ALWAYS there no matter what. Usually, I just suck it up, life with it, deal with it - because it's our life.... but if you were in my shoes, trust me - you'd get fed up with it too at times. I am so tired of hospital stays every few weeks. I'm sick of how it makes Spencer so damn tired all the time so that he is sleeping the majority of the day which leaves me to cook, clean, sit... alone. It gets lonely and I hate it. Is it sad that I can't even imagine a "normal" life? I mean - everyones definition of normal is different.. and I don't think "normal" exists... but I have no idea what it would even be like if we didn't have CF in our lives.... And I hate that. I am so tired of doing things alone because it strikes when we have plans. I am tired of not being able to do the little things together, the easier things.. such as go to church on a Sunday afternoon and praise our Heavenly Father together, as a couple, as husband and wife. I hate going to church alone. I hate it so much that I usually don't go. And then I feel guilty - because I know I SHOULD go.. and it would help me to go. But when I go, all I can think about is being alone - missing my husband who should be there by my side, holding my hand.. feeling the presence of the Holy Spirit around us... Come on.. is going to church together SO much to ask for?!?!

I just wish for a week of no pain... a week of energy... a week with a fantastic attitude on life... a week to actually be able to be impulsive... a week without disappointments... JUST ONE DAMN WEEK! Hell I'd even take a DAY at this rate!!!!!!!!!

I live with the treatments, with the medications.... they help him to stay "healthy" (funny that when we say that Spencer is "healthy" he is still coughing up a storm, throwing up after meals, and taking at least 2 naps during the day)... I can deal with the "preventative" measures... The part that just pisses me off is that even though he works his butt off to get better.. it's such a SLOW process - and when we think it's turning up... something else hits (maybe not a lung infection, but his kidney acts up, or his liver, or maybe a blockage, or the flu).... It's a never ending battle... And I'm exhausted.

Everyone tells me that I'm so positive.. That I handle everything so well.... I guess I try - sure.. but behind that happy smile and positive words - a lot of times it just rips me apart inside. I don't want to show it... I have to be strong..

but honestly.. this morning I don't want to be strong.. I don't want to be positive.. I just want to feel pissed off, angry, sat, hurt, upset.. and every other emotion I'm feeling. I don't want to be the strong one for once. Are there positives to CF... sure there are... do I want to think about them right now... hell no.

I just want a cure.... I want to see Spencer better.... that's all.

Sunday, September 11, 2011

I'm quite tired - give me a break for any typos or mistakes ;-)

What a week! Or should I say couple of weeks - ever since Spence has been in the hospital it's been all sorts of crazy around here. It's really hard for me to balance spending time with my husband while he's in the hospital, doing my studying, going to classes, taking care of Nacho, and taking care of myself - while still trying to have a social life with friends. Yikes! I think I am getting better at it though. I just need to realize that the most important thing that I can do for EVERYONE is focus on me every once in awhile. I need to make sure that MY needs are met and then I can stay happy for everyone and be the supportive friend, sister, daughter, and wife that I need to be.

As far as my classes go - I am still overly frustrated with Spanish. I have tried talking with the professor but she always seems to dismiss my concerns. If I continue having problems with her within the next month I am going to have to talk to the department or something and see how to go about this. I don't feel that it is fair that my grades suffer when I am doing 110% in that class but yet it's the professor that isn't helping. =/ I just have to keep plugging along and giving it everything I have in hopes of finally getting the hang of it all. I have the concepts and words and everything of Spanish down - it's the assignments that get me... I could rant on and on about how frustrated and unfair they are - but I'll spare you ;-)

I am very, very pleased with my Economics class - at first I thought it was going to be pretty tough, but I'm catching on quickly!! I have both an A in my homework and quizzes and I can't be more proud of myself. It involves a lot of math but I am doing it just fine without any sorts of problems! Never thought I'd be able to say that!!!! I know it will probably get harder - and I can't do it yet without my notes, but I'm confident that if I keep with it I will do okay!!!

My bioethics is great - love it so much! Research Methods is pretty boring.. but what can ya do?! It's a pretty unstructured class... but I think as long as I study the material I'll be okay.
So school is looking up - it's certainly not going to get any easier - but I'm starting to see a light at the end of the tunnel that it's not going to be as bad of a semester as I thought.... I hope that remains true!!!!!

I'm pretty worried about Spencer - if you've been following is CaringBridge site you'll know he just isn't getting any better. Poor guy - I just pray for some relief for him. He's been so tired and just can't sit or stand long at all. But I am SO proud of him for pushing himself at rehab and physical therapy. =) I'm really looking up to him right now - i mean if Spence can get himself to exercise every day then heck - I CAN. He's a trooper =) Just please continue to pray for him <3

I had a great day with one of my friends today, Malina. She's another CFer and we met this last time in the hospital - thankfully Nacho was a great conversation starter! We went to the Farmers Market today and it was my first time - we had a blast and I think we're going to go back next week. Hopefully Spencer can join us! Lina is talkative like me - There were rarely any moments that we weren't talking up a storm =) Can't wait for a great friendship to blossom!!!

Ordered my new computer tonight!!! I'm so ready for it to get here. It was only 21 extra dollars for rushed shipping and so I went ahead and rushed it - Should be here Thursday!!! Yipee!!! Hopefully it doesn't distract me too much from studying XD I'll just have to give myself a full day to play around on it and figure things out so that I can continue studying the next day... YA RIGHT.. we'll see how that works!!!

More to blog about later but I'm getting so tired!!! LONG day!!!! Hope this finds everyone well! =)

Friday, September 2, 2011

Not so good start

Oh boy - I'm just feeling really upset with the way this semester is going so far. I've been so ready for school to start and now that it's here I'm having a REALLY hard time getting into the swing of things. What stinks is that all these classes are required and I only kind-of-like one of them.

My Spanish class is just kicking my butt - and I honestly think a lot of it has to do with the professor. I thought she was going to be great - she's fun, but she doesn't teach very well. We are expected to know everything before we come to class. She'll assign us a lesson or two and when we come to class she doesn't really go over it. =/ She will VERY briefly but she doesn't expand on it or explain anything very well... When we have asked her questions her response is "well just look it the book, it explains it well"... no... it doesn't... She uses class time for in class activities so that we can learn the language by using it... That's all fine and dandy and I think it's important to do that - but It's hard to do when we don't know how to properly say the words and have problems knowing what they mean. It's also complicated when you don't exactly explain to us what we're doing in the first place in English. She also only gives us VERY minimal time to complete a class activity... We get maybe 5 min at the most a lot of time to finish it and I never get more than 1/4 done - so I fall behind. The online component is a joke - I am getting questions marked wrong because I am not including Tildes... how am I supposed to do that on an English computer?! Blah. And she doesn't explain enough in class to know what the heck we're supposed to be doing at home for the homework. I am way worried as we start to get deeper into the material. I'm already behind quite a bit - how is this going to work out =(

I'm also frustrated with my Econ class. I'm only in the first chapter and I'm really confused. I'm just going to try to push through it because, unlike Spanish, I think this class might get better as I understand the jist of it and get the hang of how it works. It doesn't help that I haven't had math in several years either - but I hope I can get through it. Only bummer thing is the one is online and so things are a bit limited with online classes.

Bioethics so far is going okay... I haven't pushed onward too much with this class but I'm liking it so far! Research Methods.. Ehh it's great for a boring subject ;-) He's a good professor and he tries to make it kind of fun.. kind of. lol I can live with these two.

I'm just going to continue to keep pushing along.. doing my best to stay caught up and learn everything I need to know. It's hard though. This semester is REALLY hard.