My Moments to Breathe

Monday, October 29, 2012

Just cough it out!!

Well, Jeremy got his wish and got to go see the Tigers in a World Series game!!!...and sadly got crushed when San Fran ran away with the sweep that night. But he still had fun and took Laila and I back to Michigan for some R&R!

Yeap, I snuck back to Michigan with only a few people knowing. I don't do that often but this time it wasn't for ALL fun and giggles, but to hel up on my antibiotics and get some extra help with Laila since Jeremy is super busy all week. I do have a great family, don't I?!

My belly is full and I am getting cozy and about to go to bed soon (I am supposed to watch Hocus Pocus with Angie, but she is laying with Laila and my guess is going to fall asleep. I love that little cult classic and so not ashamed to say I watch it at least once a year around this time. "Come little children, I'll take thee away..." Haven't seen it? You probably won't like it if you didn't see it as a child..kinda silly.

Laila was able to carve 2 "Jack O'Lamps" as she calls them in the last 2 days. One with PaPop and one with Aunt Ang. Girl loves them and it was so nice to be able to enjoy watching her have fun but save my energy for a night of trying not to cough. HELLO ANTIBIOTCIS...kick in!! And she will have 4 or more adults with her on Halloween, so I don't have to feel like a guilt ridden mother for not taking her out as long as she will want. She is very very excited for Wednesday night!

My dad told me I worry too much. (Stop shaking your head yes, dad!) But I feel the things I worry about our pretty legit. Like getting turned down for a transplant, umm hello people it could happen. And then what, how do I tell people I am a failure that way. How do I tell Laila that? He told me I need to worry about problems for that day instead of borrowing worries. The lung transplant thing is an everyday worry until the day I am feeling better and healed up, and then I will STILL worry. Sorry pops!

Well, Angie didn't fall alseep so I am having a sissy movie night on the comfy couch with maybe some cheerios to wash down another anitibiotic. Hope you all have a trick or treating halloween and happy reformation!! Can't wait to see pictures and post some of mine!!

Wednesday, October 24, 2012

Finding a cure

Yes I am still alive, just haven't had time to get on here and write. The last week has been crazy busy and now I am sick. UGH. Sick. Again.

Angie and Stacie came from Michigan on Thursday night so that we could have a wonderful "schnister" weekend. And boy what a weekend it was...

It started with our annual Halloween party/scavenger hunt. (This is a picture from the hunt. Challenge: picture of your team with a person in uniform...) We avenged Hartford for awhile, it was NOT an easy task! I am so geeked about being Thor, who wouldn't want to be the god of thunder and come all the way from asgard to help her team, am I right?! I had so much fun and was still feeling pretty good at this point so why not enjoy everyone at the party and all the pictures we were able to capture And HAHA there were some good pictures! Thanks for everyone who made this night one not to forget. 

Then onto Saturday night and the Cystic Fibrosis Foundation's Breathe of Life Gala at the Harley Davidson Museum in Milwaukee. One night we are avenging a town....the next we are trying to find a cure. 

It was a good time getting ready and all dolled up in order to enjoy a special night with some of my favorite people...and all while supporting my favorite cause!! There were so many wonderful people at the event. I was surprised how many people had remembered me from 2 years ago, it was very humbling. I chalk it all up to the cute little girl sitting behind me on that bike up there. Everyone wants to see that her have her mother for as long as she can. And really I want that too.

But this year was Jeremy's year. I didn't have to talk or have a panic attack because he did all the work! He was the guest speaker and he did such a wonderful job. One lady came up to us and said she joined the CF board after his talk. The director said it was the best speech she heard in the 25 years she had done it. Another gave me a kiss and wished both of us luck. Here is a little bit of the big guys speech:

"Living with CF sucks.  There’s no getting around it.  I can’t imagine what it feels like.  I don’t know what it’s like to wake up in the middle of the night not being able to breathe.  I don’t know what it’s like to cough up a cup of blood.  I don’t know what it’s like to face the idea of having a lung transplant that, even if successful, doesn’t mean a new lease on life.

Truly I don’t know what it’s like to have CF.  But I am here tonight because I do know what it’s like to listen to the woman you’ve known and loved since high school gasp…literally gasp for air…because the workload of sleep was too much for her lungs.  I know what it’s like to look at her and feel helpless; to feel scared out of my mind, and just be sad—but not be able to show any of it.

I know what it’s like to lie to my wife every day.  To tell her that she’s going to live longer than me.  To tell her that the reason I drink so much is because of stress at work.  To tell her that I’m not scared about the prospect of raising my hellion of a 3 year old on my own.  To out and out lie and tell her that I’m not scared or sad at all and that I don’t think about my 29 year old wife dying a scary, bloody death from suffocation.

I’m here tonight because I know what it’s like to need help, but instead always be the helper.  So tonight I am asking you for your help.  I don’t want you to come and help with washing the dishes or folding the laundry.  Your pity and your sympathy are great and appreciated, but I really don’t want them, either.  Really and truly, I just want your money."

Needless to say, it was a tear jerker. And now here it is Wednesday night and I have been sick since Sunday. I am pretty sure it is a mix between a cold and a flu. But I have been down for the count in a messy house and not being able to do much but sleep. I am hoping tomorrow I will be feeling good, since next week I am going into Laila's school and doing aCF talk. But even though I am a sick sick girl I did start part of another check off the ol' 100 list all thanks to many Sun Prairie girls....keep reading!!

Saturday, October 13, 2012

A full tummy

It's not even done and its turning out to be a nice little Saturday! Granted it was a long night with a tossing and turning baby so I didn't get a goodnight has been a good day.

Yesterday, Laila wasn't feeling very well. She ended up tossing her cookies so she got a special day. Daddy put a tv in her bedroom so she could lay in bed all day and just relax. (And I think it worked a little too well because she has soooo much energy and that I can't keep up, but it's ok because it means she is feeling well!)

Today is the funeral for our family friend and I wished I had been able to go, but this is when I don't like that lake in between my family and friends and me. I can't always get back. Instead I am making the most of the time I have on this rainy dreary day.

I woke up pretty early and took Laila back in her room and watched TV in bed (selfishly I was hoping she would watch while I napped...she was too talkative!) So I was up and on the slow move to get somethings done on this lazy Saturday. Haha Ok so I got nothing before I looked at Jeremy and asked if I could take an hour nap. Woo hoo bed here I come! I started to dream about pots and pans clanging...I know it surprises nobody that I would dream about food. But to my surprise it wasn't a dream. I was woken up from my nap by...


Laila climbed into my bed and handed me my pills and a napkin with a huge smile on her face while Jeremy carried my food and milk. Eggs, turkey bacon, toast, hashbrowns...the whole nine yards! I got to eat breakfast in bed and just relax while Laila was being fed and the dishes were being done. JEALOUS?! Yeah I would be too. Thanks a million Jeremy and Laila for my yummy food and coming out to a clean kitchen!

Just a cool way to start a busy a nice little day. Now I get to get a few things done, watch Michigan and relax. Ok so if I am watching Michigan I take back the relax part (c'mon Denard!!) Thanks to a rainy day and Jeremy and Laila I get to cross off another item on my list...#68. Have Breakfast in Bed...CHECK

Wednesday, October 10, 2012

An odd day I guess

Today I have been feeling blue. For selfish reasons. A family friend passed away from ALS last night and I talked to him often about our fights. Now his fight is over and we all rejoice that he is in the Lords hands and has no more suffering. But, we all will miss him and I will miss my inspiration. He never lost his faith or he never once complained about his life. I looked up to him and the way he fought so well and really in quite good spirits. I am glad I had the privilege to know him. And I am glad that now he has had the privilege to know heaven.

I have still been feeling pretty good, but today I was moving a little slower. I am just glad I still did a few things that needed to be done. Including some laundry. This was the first time I did laundry since I coughed up blood and I would be lying if I didn't say that I was nervous. PHEW no coughing and no blood. So glad and a huge sigh of relief.  Luckily, I still have a husband who cares enough to make sure I am not over doing it and doesn't mind getting the laundry for me. Thanks Jeremy! 

I am trying to learn ahead of time (by making a list...SURPRISE...) what all needs to be done in a certain time and the longer I have to do it the slower I can go and easier on my body it is. But there is never enough time, ever, right?!

Laila had another great day at school today...really just a great day in general. She even took a nap with Mommy. A little snuggle bug (she read me a book and kissed my cheek goodnight before she fell asleep, could the little girl get much sweeter!?) 

I guess my mind is really ready to write too much but I knew it had been awhile and just felt like having something on my blog for the week. I promise I will get things back to more normal and will start to write a little more and the things I know I need to write about. But tonight I am gonna sit back after a yummy dinner and just watch the Tigers hopefully clinch the series. And continue with that list...

Thursday, October 4, 2012

Take a breath

Mushy brain again today. I have too many things running through my head. What do I need to get done in the next few weeks? What should I make for dinner? Ugh I have to do laundry again. Is Laila going to be a good girl today? Sad, Laila wasn't a good girl. Should I keep this around or get rid of it? How many days til Angie and Tay get here...not soon enough?! How can I get more things crossed off my list, am I gonna be able to do it? Is my health gonna let me do all this? OK so those are just a few things, but you get what I mean right? 

My breathing is getting heavy again and I just need to put all efforts into making sure I do what I need to bust out the bike again. Get ready Laila! Being sick is such a vicious circle of you need to do this in order to be able to do that so that this is good enough to do that...did you follow that, cause that statement is just as crazy as the circle. My weight needs to be up so that I am fight infections, but my lungs need to be in good order so I have an appetite in order to eat and gain weight. And then add how the coughing makes me so exhausted that my body tries to shut down and rest for awhile. That hurt my head just thinking about it.

And having the support and love of those around me only helps that. So thanks to those who call or leave message asking how I am, or wondering what they can do to help. I need all of you and all of the support and friendships I can. You help more than you more! It is so important to me that you want to be there for me or care or just don't back off because of silly reasons I can not control. Thank you a million times over! (Raising my glass of milk) This one is to all of you!

Today I started the process on another item on my bucket list. And one that means so much to me personally. But I don't wanna jinx the fact that it might not work yet, so I will keep my lips zipped for now. The best is only one person knows about it...and its the person that called! Haha!! I put the rest of my photo shoot pictures on my facebook page. Thanks again Hyer Images for all your awesome work and patience.

My guilt pleasure is on TV right now, which means goodnight blog and readers. And since this girl is trying to keep her weight on and up I am gonna smash on some Frosted Flakes...they're GRRREAT (if thats not a sign that I need to go to bed...!)

Wednesday, October 3, 2012

An apple a day

(I couldn't upload a picture today so here is a cute one of Laila!)

I didn't get much sleep last night because I couldn't get my chest comfortable. I couldn't lay on either side or I would cough. I couldn't lay on my back, because I would cough. I couldn't lay on my tummy, because I would cough. I couldn't lay in the normal ball, because I would cough. I think you get it. I finally got out of bed at 4 am and did another round of my neb and then was able to untighten my chest just long enough to get a few hours of sleep. 

So with a few hours under my belt I threw dinner in the crock pot, got myself ready and woke up Squirt in order to head over to school for Laila's very first FIELD TRIP. So excited that I was able to go with her, just an awesome perk of being a stay at home mommy (now I want to clear the air and say I am not saying ANYTHING bad about the mom's who work. As a matter of fact, I have often said I give you all a ton of credit because I know for sure I would not be able to do both.) But it didn't help that I was outside in the damp air walking up in down hills and then sitting on a some hay. If it wasn't bad enough that I was stupid enough to do yard work yesterday. But it was worth it to watch Laila have fun with her friends and pick her own apples. (And be there for a snuggle when she was the only kido who fell!)

My house is still in pretty good fashion. Just a quick sweep and it will be back to a good clean order. So happy that I am still able to keep up with it. Lets hope this continues, right?! I am still in the process of crossing things off my bucket list. And I think in the next few days I will have one done...fingers crossed. 

Thanks again to all those who have offered to help me, if I haven't responded its because I am trying to figure out my schedule and how best to get your help. But there are some AWESOME ones out there...more memories to make and more crossing off to do! 

It was also very cool to hear so much feed back on my blog over this last week too. People that I never would have thought are reading this...probably right now...and it really does humble me quite a bit. I know I'm not the best writer, but it feels so good to just be able to write things out. So THANKS A MILLION for all the reading and positive feed back. Anything you guys have questions about in my CF life please ask, cause I am not sure what you wanna hear about besides what I have been typing. Also...stayed tuned cause I am gonna be writing about another very cool person in my life.

Monday, October 1, 2012

A quick blog on a quick weekend

What a whirlwind of a weekend. I MADE IT! I made it to Michigan and through the weekend without coughing up and more red stuff (I don't like the word blood...too scary!) But I can tell you I have never EVER been so scared to cough or hear a wheeze or to walk to much or to pick things up, or really to do anything! I didn't want to ruin what was a nice weekend and I didn't want to not have to tell people that red stuff came up. But thanks to me actually listening to the doctor and by the hands of God I healed!!

The rehearsal and wedding went well. And so did Team Cassie's cornhole tournament. But don't worry I breathed deep and made sure not to go crazy. I knew my limits and followed them (which blah is so hard for me to do because I wanna be with everyone I know when they are together!!)

I now have a new sis in law. Welcome to the fam Aunt Theresa! Laila had a ball dancing all night. She loved being with her aunts and cousins (sorry uncles she was loving her girls!) Jeremy and I had fun too. He did a great job on his best man speech, knocked it out of the park. It was nice to see everyone from the past and of course those who came from MN.

I only got to be at cornhole for 2 hours but those few hours were a blast. They had 42 teams sign up and the crazy madness started. I got to see the Zell family and so many friends, which means so much love going around. It was a huge hit and look for it again next year Team Cassie fans!! Thanks for coming out eveyone.

And here I am now sitting in WI on the floor with my daughter trying to recover from the weekend. I need more food and sleep and this girl with be back. YAWN. I need a weekend from the weekend. And this week might not be it. But hey just need a few carbs and naps hehe! I am sure you can tell by this blog that my mind is tired and not witty, psh I'll be back again next one.