Wednesday, June 29, 2011

Honestly, I just need to vent a little bit. I'm getting ready to head up to the hospital to see Spencer (yes he's back in.... again) and I don't want to be all upset while I'm there.
I'm very, very angry with the doctors. They don't seem to be listening. Both CF docs are on vacation and so the regular pulmonary team etc is on duty - and I don't feel like they quite understand. They are good doctors but they get really frustrating sometimes.
Spencer was admitted yesterday and they aren't at all sure whats going on. His CF seems to be doing okay, but it's everything else =( Last night he spiked a fever of over 102. His rash has gotten really bad and the swelling in his feet is getting worse. They took his kidney and liver functions and they came back pretty good. They did a CBC and found that his Hemoglobin is at 6 and his Hematocrit is at 21. (Pretty bad) So they are going to give him a blood transfusion. It sucks because there is a risk for infection from doing this and it makes Spencer feel really crappy. But it's good because I really think this will help him get more energy and feel a little bit normal. I hope it really boosts his numbers and has a really good effect on him.

But here's to the *very* frustrating part of it all.... They think that the rash might be from a drug reaction. In our experience with the rash before - it has something to do with his kidneys. Granted his functions are normal (thank goodness) but that's been the case almost every time he's had the reaction and major fluid retention in his feet and ankles.
The part that REALLY stumps me is that they think it's a drug reaction YET they STILL have him on every single medication that he was on before..... Something isn't adding up.
They want Spencer to talk to dermatology and possibly have some biopsies done. This has all been done in the past and the results were inconclusive. So why are they doing it again?

And when we ask these questions - they will not give us an answer!!! They go around the question and we are still left as confused as before. If they don't know - then TELL US YOU DON'T KNOW!!!! I feel like because of it all they are just doing something because they feel they need to and they don't know what else to do. I mean I understand they want to figure it all out, but they won't listen to us that it's already been done in the past...

Something is fishy and I'm getting really upset. I would rather them tell us that they really don't know what's going on or why they are doing something rather then keep things from us and pretend that they know what is wrong. I hate this. We've been through this in the past and it REALLY upsets me.

I am headed up there now to try and figure out what the results were from his echo. Evidently the doc heard a murmur and some swooshing sounds and so she wanted to further check it out. That's fine.... but PLEASE tell us those results so that we don't worry... kay?

Just a vent - more to come I'm sure because I haven't even covered half of whats on my mind. But I gotta get out the door.

I'm asking you to pray for some answers. Please.

Tuesday, June 21, 2011

Things have been a little bit better these last couple of days. We've had some ups and downs but I seem to be handling things better than I was...
Unfortunately Spencer went into the ER on Saturday and was admitted. They put him on the same antibiotics that he was on the last hospitalization: Meropenem and IV Tobra. It seemed to be very effective last time and so I'm really hopeful that it will go over great this time. He blew PFTs today... they went pretty well - although wore him out a whole bunch. His first attempt he blew 23% and I was pretty worried, as I honestly didn't think that they declined THAT much. (he was discharged at 31%) But he blew them 2 more times and got 25% and then ended on 26%. And this is why they have pts do three sets! So he has some room for improvement - we met the doc in the hallway and she said that we'll shoot for numbers in the 30s, which is typical. So I hope that he will be able to get back up to at least 30 or 31%!!!
Spence says that he has been feeling better slowly every single day. Always a great sign. Usually he feels worse the first few days after he has been admitted due to the antibiotics, but as far as I know he's been doing very well - just catching up on a lot of sleep!! He's been sleeping almost all day Sun and Monday. Today he's had a lot more energy. Was able to do PFTs at 12.. and then he wheeled himself around the hospital giving his arms a good work out!!! He did a successful rehab session at 3:30 and is now just resting and watching a little but of TV.... As I write frantically, trying to get our wedding thank you's in the mail!!!! (Can't believe how long it seems to take!!!! AHHHHH!)

We talked to the doctor yesterday and she is very, very proud of Spencer. She can see that he's really been working hard outside of the hospital and it's paying off. She mentioned many times how happy and proud she was =) Always SUCH a good feeling to hear that, since a short while ago they said he was non-compliant!!! w00t!
Things sound good about getting go attend the funeral on Monday. She completely understood why it was important for him to get out of the hospital. She said that they would probably just discharge him either Friday or Sunday. We brought up the possibility of doing IVs at home so that he wouldn't be off of them too early. She was pretty receptive to that idea but we're just playing it by ear.
We're still not sure what kind of infection he has, as his symptoms coming in here were pretty different from previous times. He just spiked a really high fever, and got a lot of chest tightness and shortness of breath. Usually he is really junked up and can't stay on top of getting mucus out of his lungs - but he said that this time he felt really clear. We were told that he sounds really good - so I think that if it was an infection (most likely yes, it was) we caught it really early - thank goodness. So both Spencer and I expect a pretty quick rebound :) Always good!!!

So aside from this hospital business and Spencer - I am doing much better. I keep getting really bad headaches that have usually been turning into migraines... Excedrine hasn't really been helping and so I'm thinking that it might have something to do with my sinuses. I'm going to try to get a decongestant to see if by taking that in the early afternoon if it will stop my late afternoon headaches!
I think that a huge reason that I was stressed and not handling things very well emotionally because I was worried about Spencer and I didn't want to be the one to tell him that he needed to go into the hospital and risk missing his dads funeral. It's not at all an easy call to make under "normal" circumstances, but in this case - it was just terrible. I know that he's being taken care of now and that the decision is past us. The docs being really optimistic is most definitely helping as well.

I think that's all for now - much more on my mind but I need to get back to writing out Thank You's - goal is to get 3/4 of them out by the end of this week, if not all of them!! SO MUCH WRITING!!! :-P

Saturday, June 18, 2011


I can't catch up on anything. Goodness is it so much to ask that I have a clean house?! Ever since we've moved it seems we've been on the go and we still haven't figured out where to put a few things... I guess that COULD be from lack of trying... but jeez. I feel like our house is always a pig sty. =/ And it is NOT from lack of my busting my butt trying to get everything washed and put away. Seems like I get all the dishes done and the kitchen looking pretty good and then meals happen and a milllllion things get dirty - and then I have to clean them all again. Wouldn't be AS bad if I had a dishwasher but I don't.... it's all by hand.. and it sucks.
I get the house cleaned up to where it's looking pretty nice and then we go into the hospital for 2 weeks... we get home and our suitcases get unfilled and then nothing ever gets put away due to the fact it's all dirty or we're just exhausted and don't want to do it right when we get home. it seems to sit there forever and then after throwing it in various rooms all the time and then I finally decide that I need to put it away.... so I do... and then we either make a trip somewhere, or go back into the hospital and the cycle goes on.... I can't win....

I hate clutter.. I hate a mess. I really do. Might not believe that if you saw my room as a teen - but gosh. It drives me crazy. I can't focus on anything and it puts me into a terrible mood. I hate it. I want it clean.

I'm just not having a good day. I don't know why. I can't put my finger on exactly what it is that is seriously bothering me. I can think of a million things that are annoying me and frustrating me... but I can't pick out the one thing that is bringing me down.

I feel like I'm drowning in a mess... drowning in bills... drowning in just everything. Spencer hasn't been able to help at all. He's been sick... running nearly a 103 fever last night... so as I am trying to and wanting to clean and everything I have to help him out as much as I can. When he's already sick... he needs to rest. We've come to this conclusion by experience. When he's not oxygenating well he can't move around much... it causes him to just get worse. Damnit he really needs to go into the hospital but we can't do that because of the funeral. I hate this =( I want him well. I am SOOOOOO thankful for the 7 weeks we had together where he was feeling well. Gosh I am truely thankful... but this just sucks. I guess you get used to him being well and then when he gets sick it's a huuuuge let down. I want to do so many things - but he's stuck in the house or else can't go all that far away from home for very long.

It's all just so hard. I'm trying to help him grieve... comfort him because he's truly sick... and trying to keep my head above water but its NOT WORKING!!!!! =(

I just need some support... I can't do this by myself. I want a shoulder to lean on right now... I am that shoulder for Spencer but right now he just doesn't have the emotional support to give to me right now due to his dads death. I understand that because he is always here for me when I need it - this is just an exception of all the other times. I just want someone to ask me how my day is going... how I am doing... and trust them and love them enough to just break down and say... I'm not okay today... I'm having a rough time.. instead of Oh yeah I'm hanging in there.. doing okay - we're getting by alright... because it's not okay.. I'm barely getting by and I'm not emotionally doing very well these past couple of days..

I just needed to vent. Going to baby sit for several hours and I want to be chipper and energetic for the kiddos... Needed to get this out beforehand so it doesn't build up while I'm playing with the kids.

Friday, June 17, 2011

it's so, so hard...

I don't really know what to write. But I'm having a hard time. It's a combination of so many things and I just don't know what to do. I don't know what to say... or who to talk to.
I don't know how to help Spencer grieve. This is one of the hardest things we've had to go through together. Not only is he having an extremely hard time dealing with his dads death... but he's slipping as well. I don't know if it's associated with just a normal decline and his CF is just catching up to him after 7 weeks... or if the death has brought on him getting sick.

Normally we would be celebrating Spencer being hospital free for 7 weeks - It's a HUGE accomplishment when he's been in every single month or even more this whole year. But being happy about it is just the last of what we're thinking about. This should be a time for celebrating. For becoming really close to each other because of our marriage. A time to enjoy the summer, enjoy life outside of our house.... but instead we're focused on just keeping it together and getting through all of this crap.

I know that there is process to grieving and I want Spencer to feel his emotions, not hold them back. I want him to PROPERLY grieve.... but I also do not at all want this to jepordize his health in any way. He's finally made huuuuge progress and now I feel like this SUCH a big set back. I think we could deal with something small - but a death..... the same time as we got married.... when he was doing so well? >.<

I don't at all know how to help Spencer. I'm finding that I am trying to stay really strong for him... not show much emotion and just be a shoulder to lean on... but then I suppress my feelings and feel them 10 times as strong later and really struggle to overcome them. I don't know when I should talk to him... I don't know when I should leave him alone... I NEVER know what to say. I don't want to make things worse, but then again I want to say some of the things I'm thinking in just a slight hope that it will help him out. It's so, so incredibly hard. His health is slipping and so I can't let him despair too much - it's SUCH a fine line...

It wouldn't be so bad if he could just go into the hospital now and be able to get out for the funeral... but if he goes in and catches this in the early stage - he'll be in for 10-14 days.. Too long and he wouldn't be able to attend his dads funeral and see his family. So what do we do? I have to try to help him stay healthy enough... but how when he's so full and infested with self doubt and despair.

It's hard. I'm at a loss. =( I know feeling helpless is normal.... I can't seem to find many resources to help a loved one grieve that have actually helped me... because I feel like this is such a unique situation. Yes, I want to and need to let him grieve.... but how much is too much with his health so unstable? You know???

He's seen a councelor before, but they have such stupid rules about making an appt. You can only make them on a certain day and it's first come first serve type thing. You have to wait until a specific day to call.. and then you have to call RIGHT away in order to be seen. And we have to work around my schedule. =/ So it makes it REALLY hard to get an appt. And it seems like they don't care how much your struggling. >.< So I feel like getting him an appt right now would be next to impossible.

ANY SUGGESTIONS!!!???? I need help through this. How do I help Spencer? =(

Tuesday, June 14, 2011

Wedding... and a funeral

Let me tell you - the "best month of my life" isn't quite the best month ever. I was planning on June to just be spectacular. I figured it would start off with a wedding and end in new married bliss..... wrong. The month DID start off FANTASTIC though. Our wedding went down without a hitch and it was absolutely amazing. I am so thankful that Spencer was healthy and I had my best friends and family there to support me.

But my vision of the rest of the month has been very, very distorted. I couldn't wait to get back to Utah and start the rest of our lives together right away. I almost expected an immediate hospitalization - but even that's been able to be avoided for now. And even if we did have to be cooped up in the hospital for 2 weeks - I had some fun ideas to still enjoy being married and starting the rest of our lives.
If we didn't have to go to the hospital... well I had SO many thoughts of what it would be like. You get married, you go on your honeymoon, you come home - clean and put everything away and start your new lives together as a couple... isn't that how it "normally" is?

Well in our case - It's not going like that at all. We did get enough money for a small honeymoon - but we're waiting until around Spencer's birthday on July 12th to do a combined birthday/honeymoon for a few days. So I thought that we could enjoy being home together before I start working later this month. I couldn't wait to get home and together clean our house, put everything away.... watch movies and snuggle up with hot chocolate. But there's been a twist.

Spencer's dad passed away Saturday morning... and Spencer is having a rough time with it. I don't blame him AT ALL for handling it the way he is.... heck I would be 100 times more of a mess than he is. Bless his heart. I think he's handling it very well - but as I thought we would be focusing on US and our life together... we're thinking about his dad, about what our children won't get to have, what Spencer won't get to experience with his dad. He keeps telling himself not to think about what he wishes he could or could not have done or all of the what if's. It's hard to get your mind around it though.

I'm trying to help Spencer through the grief process as best as I can... but I don't handle death all that well, myself and It's been really hard to know what to do or what to say. My heart breaks for him. He loved his dad SO very much. And only recently did he start listening to him and wanting to have in depth conversations with him. If only there was more time....

I wanted to come home and as a couple do laundry, dishes.... but instead Spence is gloomy and if I want it done - it's all up to me... for now anyway.. I know it won't be this way forever... but We're supposed to be lovey dovey and such right now - and we really haven't even carried a good conversation at all because he's trying to just shut him mind off so that he won't be too upset. It's hard...

This is a true test of our vows.

I know most of this might not have made sense, but I just needed to get it out. I'm not mad, or upset in Spencer in any way at all..... I just wish our "wedding bliss" could have continued throughout this month instead of thinking about the impending funeral on the 27th...

Wedding Sneak Peak

Thursday, June 9, 2011

Another Thankful Thursday

I've decided to jump back on the bandwagon with the Thankful Thursday posts. Got the idea from Ronnie's blog and I've done it a few times - but I needed a good reason to post a blog, I think this is my good reason!!! =)

1 - I am so thankful for my new husband!!! He's my foundation for everything and I just don't know what I'd do without him. He got me through all the stress of the wedding planning and he continues to be here for me every single time I need his support.... and even when I don't!

2 - Very thankful for the weather both yesterday and today! It's been SUPER hot here in Kansas... upper 90's ever since we got here. Yesterday it only got into the mid 80's and today barely hit 70. The break from the heat was very much needed! And today was just BEAUTIFUL because not only was it cool, but the wind wasn't blowing either. Love days like this! Now where the moisture?! ;-)

3 - I'm thankful and so very blessed by the comfort and love of our Heavenly Father. Spence and I have been put through the ringer this year and I'm so glad I feel His love every single day. I am very sad to say that Spencer is going to lose his dad soon, but because we feel His comfort, support, and love, and because we know that we will see my father-in-law once again on the other side it makes just just a LITTLE bit easier - though we will never prepare ourselves for when the day comes, and it will never be easy to say that final "see you later"....

4 - I'm thankful for good health! Spencer has been doing fantastic!!!! We're 5 weeks out of the hospital (this Monday will be 6!) And he is still feeling good. He's had a few rough days where he's just needed to sleep - but I couldn't have asked for more for our wedding!!!! We've been able to spend some nice time with my family and actually enjoy ourselves because Spencer's not needing to go as soon as we get there. It's been fantastic. My health is being kind of rocky and I'm really nervous that I might be getting sick with my Crohn's disease - but I am still thankful that I felt good for our wedding, and that I am not bleeding from my intestines and even though eating is painful, it's not bad enough to where I'm not eating at all. As I've said so many times - It can also be worse, and it can. Just makes it a little bit easier for the "now"

Tuesday, June 7, 2011

Post # 100!!!

I can't believe that this is my 100th post! I didn't think I'd get here. Usually I start something and never stick with it - but blogging has helped me so much! I am able to express what I feel without feeling guilty and like I'm being a burden to others by venting all of my problems and frustrations. I have people who follow me on here who have great advice and who I can relate to.

I have tried keeping a journal - and it works, for awhile. I still write in it every once in awhile when either my problems are to personal for a blog or when I don't want certain people to be able to read my thoughts - but for the most part; this blog is PERFECT and just what I needed!!!

So YAY for me to getting to post 100!!! Here is blogging to 200 =)

Sunday, June 5, 2011

Brief Wedding Post

I want to write so much more later - but firstly, I want to send my thanks to SO many people, whether they are reading this or not. I am very grateful for everyone who has helped us plan the wedding, let us borrow supplies, helped make the day smooth and much more. I just think that everyone deserves a bit of recognition, because it's just the least I can do.

My momma - Thank you SO much for EVERYTHING! You worked so hard to make everything fit together and work. You put my stress level at easy by helping and calming me down when everything got hard. You came to the rescue by helping to fix my dress and many other times. If it weren't for you I don't know how we could have made everything happen!!! It went incredibly smooth (aside from a few minor disappointments) and I do have to say 99% was because of you!!! THANKS MOM!!!!!

My bridesmaids, Amanda, and Jillana - You girls came to my RESCUE! There was so much to get done... which with one person alone it would have EASILY been a weeks worth of work - but you came through and we got it all done in a day! I had a great time putting together decorations with all of you - they looked GREAT! You were there to calm me down when everything seemed to be falling apart. =) When I couldn't think of how to do something - one of you would have a brilliant idea! You all let me rest the night before the big day by stepping up and doing a WONDERFUL job decorating the church! Your improvisations were perfect! =) Thanks for everything - I can't say that enough!!!!

Arielle!!!! - THANK YOU for doing a WONDERFUL job with the pictures - I know that we haven't even seen them yet - but I just know that they are going to be GREAT.. Heck with over 3,000 pictures taken I know they are going to be perfect and just what we're looking for. You were SO great to work with and I can't wait to give you a LOVELY testimonial for your photography business! Everything went very smoothly. Thanks also for helping with decorations! It was fun and I had a great time =) Thanks for understanding that my brain was just COMPLETELY fried and having the patience to listen to me even though I repeated myself 10 times ;-) you were great!

Ellin - Thank you SO much for keeping my mom SANE! She was so super stressed out, but then you arrived and took so so much off of her shoulders. You were a huge help in getting things set up, taking things down, and helping to make the day go so great! We had a great time while you were here - especially at the farm!!!! Come back soon some day!!! =)

Lauren and Molly - It meant SO much to Spencer and I that despite feeling so sick you were there for us on our incredibly special day! I hope you both get to feeling better real soon! =) It really shows us how much you care about us that you were there. You both hold SUCH a special place in our hearts. I hate how far away we are from each other! We had an amazing time chatting the day after the wedding - SO glad we got that chance!!! Love you both!!!

Tessa - Thanks for reading for our wedding!!!! I know how much you didn't want to but you were a trooper with it! Sorry it was a last minute thing but you did GREAT! Don't doubt yourself so much; have some confidence!!! It sounded wonderful!

Jaime - Thank you for lighting the candles for us! I don't know you all that well, but i'm very thankful that you stepped up and helped us out!!! You looked so pretty!!!

Tina, Karen, and Jan - Thank you very, very much for running the food tables!!!! I know you took a lot of stress off of my family by helping us out with that =)

To all of our guests - We cannot thank you enough for supporting us on SUCH a special day!!! We realize how many people really care about us!!! I hope you all enjoyed yourselves at the wedding and reception and again, THANK YOU for setting aside this date to spend with us!!!

To our of town guests who traveled 12 + hours to be here - THANK YOU! really - you made us feel SO special!!!!!!!!! It would have been so easy to not make that LONG trip to Kansas and back to your homes the EXACT same day... but you did - all for us.... We are forever grateful that you could share our day with us!!!! You're always going to have a special place in our heart. We love you guys so very much <3

I KNOW there are so many more people to thank - and i will get to that but these were the people that immediately came to my mind that deserved some recognition.

all Spencer and I can say is.... thank you, thank you, thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!