My Moments to Breathe

Wednesday, September 26, 2012

Red is no longer a color I like

I don't have a clever way to start this blog. A way to grab your attention and hold on to it. Maybe because my mind is in a fog or because I just don't feel like trying to be clever. I should be really excited tonight and doing my normal hustle and bustle the night before a Michigan trip. But instead I am sitting in Jeremy's chair with comfy clothes, hood up, and the computer on my lap; all while Jeremy does the packing, bathing of the child and cooking of our dinner. SIGH.

This morning was school pictures (which Laila had to have many takes because she Rev'd every picture they took...which is the Zell way of saying the girl couldn't have a natural smile!) and while they were taking them I told Jeremy that I had this weird cough that wouldn't stop. It wasn't a hard cough or a long cough, but a nagging deep cough that just wouldn't go away. Oh well, its allergy season, right?! I got home after dropping her off and cough a big nasty cough that brought up some good junk (any CFers out there reading this you know what kind of cough and junk I am talking about!!) and felt so good just to get that out. I thought and still think it was part of the last deep infection that finally hit close enough to the surface and broke up just enough to work it out. Ahhh...a little more relief!

I went on with my normal day, shower, clean, watch a little tv and rest, pick up Laila from school, lunch with friends and back home to get more things done. Just one more load of laundry and I was done and could start the process of packing...that big process of never knowing what and how much to pack. I carried the small load down and just had to clear my throat...which lead into some liquid coming up. Well, since I had just eaten some Lucky Charms (always a kid a heart right) I thought my tummy just didn't settle well. Then the coughing started...

I walked up stairs with what I thought was more crud to spit out in my mouth. Patoueee...I spit it out and saw it. Blood filled the sink. I coughed more. More bright red blood. I screamed for Jeremy in between coughing and spitting out all blood. BRIGHT RED BLOOD.  I was coughing up all and only blood. I mean I have coughed small amounts in mucus before..but this was just gooey red blood. I knew the time would come when it would happen...and really I have always been OK with talking about dying, but never could joke about coughing up blood. It was too scary. But here I was in my own fear.

Jeremy ran and got jeans on and said we were going to the hospital..."everythings going to be just fine, Cass" is all he could say (and only thing he will still say when I ask him if he was scared.) So I did what I am sure anyone would do, call your doctor! The one good thing about this all is I happened to do it on a Wednesday, which is the day my dr happens to be in the office. And I was lucky enough in my fear to be able to talk to him directly. Thank goodness he was there and could talk to me about it. 

"Most likely a huge vessel that broke during the day and it needs to heal and stop the bleeding. Don't rush to the ER because the anxiety and everything going with it could aggravate it more. You need to be a pre-Madonna and do NOTHING all night. If you are coughing up a lot still in the am you come here. Don't drive tomorrow. Don't pick Laila up for awhile. If you cough up a ton on your drive tomorrow you find the nearest ER. If you cough up in MI then you rush  to UMHS."

So, yeap, here I sit with the computer on my lap trying to heal something I don't know how to heal. CF snuck up on me and it scared me.  It grabbed a huge fear of mine and through it in my face...and out in the sink. And trying to not have anxiety or excitement is so hard. Don't cry and breathe deep. Don't cry and breathe deep. I am ready for a cure.

Tuesday, September 25, 2012

Over 5,000!

Holy Cow! I have had over 5,000 views on this blog. I am seriously blown away. Thanks everyone for reading, I must not have bored you yet!

I am still feeling pretty stinking good and I am working on keeping up my weight. Thanks to Wal*Mart and their nice sale on cereal right now, I can't stop eating. Nor can I keep my cereal stock, well...stocked. I still don't have any crackles in my lungs YAY. My arm itches a little less YAY. Still have some energy YAY. Was able to get everything done on my to do list (mostly) YAY. And I have been able to keep up with my house very well super YAY!! Thanks to everyone for all the thought and prayers the last few weeks. It was nice to hear from all of you, I need support more than I lead on to.

I am pretty excited because Jeremy and I are helping Laila's school with a Cystic Fibrosis fundraiser. This includes talking to the kids and teaching them a little about CF. And because its a huge hit, my vest is a must to get the young ones to remember and talk about it. I am trying hard to think of a way to get Laila involved...when I am gone (whether it be in 1 year or 20) I want her to be  wonder speaker and rep for CF. Get the awareness out and be able to tell her story. Start them out young right?! (Although last time I got her involved she stood in front of the crowd and started to take her dress off...sigh...) 

After this weekend (which is so busy I am pretty sure if I blink I will miss it!) I am going to take a look at my list and get a few more things checked off. I have a few in progress, you can check the list to see what I am doing if you care to, but really want to nail some down. I have a few in mind so watch out. 

Tomorrow is picture day for preschool and I worried too much about it. Its more pressure on a parent than I thought! Do you go timeless? Or do you go with whats in style? What color do you do? Now what about the hair? Ok that last question has to be revised a little...Now what about LAILA'S hair?! Thats something to think about when we wake up. But I let her pick from an option of 3. And no, it doesn't have purple or glitter...I am just as shocked as you are!!

Well, cereal is calling my name and I am going to get some progress done on my 100 things list (you may ask what it is...just wait a week or two and I will fill you in!!)

Saturday, September 22, 2012

"Fly like an..."

...So this is what happened on my way home from Madison! I know, I know, you can't tell from the picture. But thats because I couldn't get a picture. But this was a moment later!

I SAW AN EAGLE IN THE WILD! I am pretty sure it was a gift from God, because I have taken that trip many times back and forth over the last few years and never even knew eagles lived there. But there is was, an the wild. 

I was just driving and groovin' to my tunes while my child was napping and I saw this bird go in for some road kill. So I was like, "Geesh this vulture needs to move. Huh...I didn't know vultures claws did that. WOAH, thats so not a vulture." I slammed on my breaks and like screamed! Too bad nobody was around to see it with me (well, Laila was there but obviously you can see by the picture she was sleeping...)

It was amazing. They are beautiful!! I totally think America has a wonderful symbol in that big bird. Eagles always remind me of my grandpa Doddie! I am getting excited all over just thinking about it, and now I want to see another one. EEE!! Another unexpected cross of the old list...#5. See an eagle in the wild

Thursday, September 20, 2012

Giddy Up!

Look at her...RIDING A PONY!! Laila loooooved this way too much! And this was just part of an awesome day.

It all started with sleeping in until 7:30 and being able to get myself ready while my beautiful daughter slept in even longer. Even though I was hooked up to my medicine the entire time, it was great to be able to wash my face, brush my teeth, do my makeup and all that stuff without a little shadow! (Yes, I love my little shadow but as all those moms...and dads...know sometimes its nice to be able to do things by yourself.) 

Off to Madison Laila and I went to get my picc line pulled. The whole ride over all Laila talked about was how she wanted to see a pony and pet one, and maybe even ride one. The funny thing is she had no idea what was in store for her, I hadn't told her anything but that I was going to take her to give her a surprise. I like to think that maybe we are so much a like that we can read each others minds...but I know its just her seeing a horse and talking about it.

I blew my PFT and the numbers stayed the same, but since I was feeling so well and able to breathe better they said they would pull it. I was very excited because it meant getting my arm and skin back after 2 weeks. I itched and rubbed and ahhh did it feel good. (But now it is so entirely sore it brought me to a few tears...yeap I'm not as strong as many of you think!) Laila watched as they pulled and she did a great job. She stood by my feet and asked a bunch of questions..."does it hurt momma?" And the cutest part was when the nurse told me to take a deep breath and hold it, well, Laila did it too. Def gonna be a little nurse or doctor. Love her.

Then off to Christys house to ride horses. Laila was so excited her little body couldn't sit still! She even got to brush Reba and get her ready for her saddle. So we went to the ring...or merry go round if you speak in the language of ride her. She couldn't stop smiling!! She had a blast and rode for about an hour before we peeled her off, which lead to tears and being able to see the other horses and sit on Reba again. 

Christy, thank you so much for spoiling Laila (...and me) and giving us a wonderful time today. I am pretty sure she has the pony riding bug now. Maybe she should ask Daddy one for Christmas!

After a few more goodbyes we headed toward home when all of a sudden out of the blue I got to be able to cross something off my bucket list....stayed tuned :)

Tuesday, September 18, 2012

"I need to sprayed"

I am so super excited because this has been a pretty cool week so far! It started with my wonderful sis, Angie, and our friend Emily coming into town to clean...ok DEEP CLEAN...our house. I will admit that I have not kept a house that I am proud of. But now its nice to be able to look around and see through things and be able to eat off the floor again (ok don't worry we don't really eat off the floor!)

They scrubbed every inch of this house and didn't complain about it once! And if that wasn't awesome enough the girls didn't do this because they expected anything in return, or to hold it over my head for years. They did it because they love me! And Laila girl helped as much as she could! She sprayed the windows, she sprayed the table, she sprayed the floor, she sprayed Angie, she sprayed the counter, she sprayed the oven...I feel I don't need to go on, you probably got the gist of her favorite chore. But she really did work her tail off making sure to be like a big girl and help. (She did clean walls and floors to...and cried because she wanted to "wash the house" even more!)

I am not sure if this is a first step in my accepting help of not. And really not even sure if I want it to be. No let me state that one differently, PART of me doesn't want it to be. One side knows its ok and good and the right thing to do to accept the help which is offered up (and this was huge for me to let these girls do this!) but the stubborn part doesn't want to admit that I need that help yet...or at all! But hey I am working on it!

So girls, THANK YOU THANK YOU THANK YOU for driving all night, letting Laila wake you up both days early, spending all day cleaning, taking me for hot chocolate and Culvers, and making me laugh and smile the entire time! (Emily, she asked me if I could get that car game on my phone with "the spinner things like this (as she shows me how to spin it!)) Next time you come I hope that it can be all fun!

I get my PICC line out on Thursday (I am literally counting the hours down) and so very excited to feel the blood rush back into that part of my arm. And then to be able to use my arm again. I am feeling pretty darn good and am hoping this clean house will help me stay feeling so stellar. Let's hope this great week keeps up!

PS: I got my Hyer Images photos back tonight! GEEKED! Here is a little sneak peek:

Thursday, September 13, 2012

Two Awesome Cousins

I love these two very much! They have the biggest hearts ever. They do things for everyone else...not because they want anything back, but because they love to make people happy! Especially their family.

Dawn and Tom are my cousins (well Dawn because she HAS to be...Tom because he married dawn and was forced to be!) and I seriously think they are some of the best people in the world. If I lived closer they would get sick of me, because I would want to see them at least once a week. 

I will also say...before I get in trouble with the rest of them. That I love all my cousins and am very close them them all! But Dawn and Tom are pretty special! I didn't have get a chance to have them in my life all along and it was just a bit ago that I got to get Dawn back and have Tom come with her...I consider myself very lucky. We are a very close family and ever since the passing of my uncle in Dec 2010 we all have be a ton closer. Family is forever.

I wanted to write about these two because they gave me a wonderful surprise in the mail today. A FRESH BAKED PECAN they know me or what!? This is just a very very small example of the things they have done for me. More examples: a few more pecan pies, making sure to see me when I can come home, being at every CF event possible (including working the garage sales which is a tough job), treating me like gold, and of course treating Laila like she was a true niece! 

Dawn and Tom love Laila just as much as she loves them. Another example of their kidness: they found her a big wheel...but not just a big wheel but a PURPLE big wheel. And they drove it up to Ann Arbor to give it to her and then took us to dinner. They spoil us rotten.

So, Dawn and Tom, I want to take this time to let you know how much I love YOU! I wish I had the years back that I didn't get to talk to you as much. I wish I lived closer so I could see you more. You too make me laugh, smile and feel very safe. I know that you have my back and care about me more than most cousins care about each other. Well, I feel the same way. I love you both very much and am glad to have you as mine. I claim you :) and that says a lot right?! Thank you for everything you both do for me, my family, and the fight against CF! Believe it or not I love you both 100x more than I love the pecan pie that I may or not be eating right now!! 

Tuesday, September 11, 2012

A little ballerina

Could my little ballerina get much cuter? This makes my heart happy...she loved her first class. Watching her giggle, dance, have fun and be a good listener all at the same time just makes me take a deep breath and think...Ok I must be doing something right. Then to watch her come home and show Jeremy and I what she learned was a nice feeling too. Growing up gal!

Today was one of those days that CF has to be in my thoughts and I can't escape it. Jeremy stayed home almost all day sick as a dog. Poor daddy! So this means I need to watch what I touch and make sure to wash my hands and not touch my eyes, nose, or mouth as much. Yes, the good thing is that I have a PICC line so I am getting very good drugs to knock away whatever he has...or just keep it to a minimal. (Look at that...a positive for having an IV right now!)

But this doesn't mean that Laila can't get the nasty bug and I will have to be even more involved with it. So hand sanitizer is a good thing to keep around the house so I can give her some once in awhile. The other good thing is that the weather is still very nice so I could just take Laila out. Park here we come! She was so excited to spend the day there, but was hard for me because I couldn't help her since I can't lift her.

Jeremy seems to be doing alright. Lots of over the counter medicine, kleenex and water! Hoping that when he wakes up after a good nights sleep...with help from meds...he will feel a ton better! Maybe even want dinner! Dr. Laila has been making sure he stays warm and that he gets lots of love. Poor girl is taking care of both of us now! 

I just dislike that it seems like no matter what I am going to get sick. Laila is going to bring bugs in from school. I am going to touch a shopping cart and get a cold. Jeremy visits somebody in the hospital and brings crud back. I hear somebody cough or sniffle and I am on alert. I can't get sick...I just can't. And I know I have done this too, but people are just inconsiderate about sickness. If you are still at the stage where you are contagious PLEASE STAY HOME as much as you can. What may be a small cold for you may be a life threatening cold for somebody else. It's just such a hard thing because everyone wants a normal life and to be able to go and do the things they want to do, and people who are sick just have to be on full alert and shelved with sanitizer no matter where they go. (Sorry for the rant, its been a peeve of mine since I was a kid...)  

I am driving into Madison AGAIN tomorrow to get my dressing on my PICC line changed...I feel I need to find a better option so I don't have to waste time and gas on this 10 minute crud. But I suppose it is better than getting an infection in my blood stream (EEPS!!) CF can suck the money, life and normalcy outta life. BLAH. 

Well, seeing as I should gain some more weight I better go eat some food. Drs orders...right?!

Sunday, September 9, 2012

Laila's Life

Laila and I were feeling very silly yesterday. I think it was mostly because we missed eachother so much. These photos are from our 30 we took of making funny faces (haha Lailas face on the last one CRACKS ME UP!) I did throw in a nice one of us before church just because I wanted to show everyone that we can clean up well.

I had a good time with Laila yesterday after her 3 1/2 hour nap...guess I am not the only one who gets exhausted while I am in the hospital! And as a side note this meant I got to watch Michigan ummm win too (Blue you better step it up!) It makes me very sad that because her mom is sick that her life gets a tad crazy too. I wish I knew how much this impacts her for the future. Is it gonna make her stronger? Will she be nervous when I go into the hospital more? Will she just think this is normal?

I believe that my CF made me have to grow up (in a sense) faster than a normal child. Even though I wasn't the sickest child nor the worst case of CF, I did have to go through things that I wouldn't want a child of mine to go through. But as a child I never looked at this as a burden, but more as just something I had to do. I never thought it odd that I did and my friends or family didn't. I just thought it was my life. 

I am hoping that Laila doesn't have to grow up to fast even though her mom might not always be there. Maybe her life is just different, still normal...well as normal as it can be. I am very lucky I have Jeremy who makes sure she can come see me (and that I can see her!) and I am very lucky Laila has so many people in her life that want whats best for her too. When I go into the hospital I feel great that people are willing to add her to their routines so she is taken care of! Thanks everyone for doing that!

I wondered how much little Lady understood so thought I would ask her a few questions. Some of her answers made me smile:

Why does Mommy have medicine: because you are sick
What does Mommy have: a boo boo
Why does Mommy cough: cause you have Cystic Fibrosis (now she does say this pretty well but really I couldn't tell you how she says it. But then she tells me to cough so she can pat my back.)
What do the nurses do for me in the hospital: They listen to your heart
What else do they do: they get your doctor tools
What is your favorite part of the hospital: Getting food and just playing with 'pluter (which is a computer in Laila language)
What does Mommy do because of her CF: (She fake coughs)

I think my girl will make a good nurse or doctor one day. Her bedside manner is already tip top...she tells me that my arm is so beautiful! She loves to help me with anything she can in regards to my medicine. She helps me secure my PICC extensions on my arm, she cleans my medicine before I hook up, she pushes the flush into the PICC, she pats my back when I cough. Yeap, I see a PhD or RN in her future. Dr. Laila...paging Dr. Laila!

Saturday, September 8, 2012

PICC Line...SchMICC Line!

Home after a short little visit to D6! Why is it that after a hospital stay, no matter how short or long, I am always more tired when I get home? This time the nurses were so wonderful about letting me sleep all night and not waking me up for vitals. Yet, YAWN, I am still exhausted! So I am gonna write this through a very foggy mind!

I said goodbye to Laila at school (thru more tears) and got ready to go to Madison. One more good shower and hair do before I don't have full use of my arm. We were off...and had to be there by 12. It was pretty darn quick in the pulm clinic...which now I am not really sure why I had to go thru all that stuff because we all knew I was going in. But alas! I blew my PFTs, which are now UP to 29% (this is up 3% so I was kind of excited because that just means after this it could go up even more. WOO!

Going in I knew that I was going to have to jump on the scale, and I totally got the nervous but excited feeling. Please, I just don't want to have lost weight...and maybe even gain a pound. So I jump...ok so i stepped...onto the scale and prayed. It was calculating and my eyes didn't leave the scale! DRUM ROLL PLEASE....102.6!! Boom...I gained 4 lbs (and to note I only had 2 tacos and a pop from Taco Bell in my belly!) That means I gained enough weight to have my BMI (body mass index) over 18%...which means NEXT STEP TOWARDS TRANSPLANT (another blog about this one later!)

Now to go to admissions and get into D6 and my room. Sign up at 1...don't get into your room until 3:30. Like that helps anyones anxiety (you may ask what I did during that time..I shopped at the mall then got back and waited...and cried. Then got into the room and had to wait 2 more hours to get my PICC (and in the mean time Jeremy went home to the little princess) and start my meds. Why did I have to go in so early when you knew I wasn't going to get a room because it was crowded?! I could have picked Laila up from school, like a good mom!

So as many of you had seen on FB I brag about good nurses quite often. MOST of my pulm nurses on D6 are amazing and go up and above to make sure that I am set and ready and that everything I could need or want is met. Not because I am a pain and demand it, but because thats who they are. But why is it that for every 10 good nurses there is 1 cruddy one? Like why when I was already upset when I get into my room the nurse, who since I can't say the name I gave her out loud, we shall call MUFFIN...was a not nice person. One line she used in my ear range: So another nurse comes in to get my vitals to start things off and she didn't have a mask or her gown or gloves on (CF patients need their nurses and dr to wear such things so we don't catch outside cooties.) So she said "Oops I hadn't realized I needed to put them on." Ok, no big deal to me. But then Muffin says to this nurse, "It's Ok, its not like you are gonna die or anything." And in response I say to Muffin, "You are right, I just could..." and the stare off started. Girlie, please, I will win this one! So thanks again to all my nurse friends who are wonderful and care so much for their patients!

Not too much happened when I was in the hospital...since I wasn't in there long. I got a few tests done. I talked to Brooke my NP (so my favorite NP switched to a place closer to home and I was very very upset...brought me to tears because her and I had a good relationship and she was one person who knew how to talk and handle me!) about the next step into transplant land. Got a visit from Laila, Jeremy and Aunt Gwynn....which left with Laila SCREAMING my name down the hall as she left. Oh my poor baby (she has been very clingy yesterday and today!) 

I still have my picc line and am doing medication here at home (hooked up while I started to write this!) and have a doctors appointment next week. Thanks to Aunt Gwynn for coming and helping with Laila, feeding my family, and cleaning part of my house. I hope you all have a person like Aunt Gwynn too...everyone needs one! Now I can start to get back to a "normal" routine of more meds and keeping my sanity for the next 2 weeks. So here is to getting healthier and packing on even more pounds!!

Tuesday, September 4, 2012

Waving the white flag

Laying down and not being able to fully breath is not ideal! And seeing as I am not getting any better or staying very healthy now that I am off antibiotics means its time to surrender and go in.

I was kicking and screaming yesterday knowing that when I woke up I would have to call the doctor and tell them when I wanted to go in. So I was pretty sure that Sept 11 would work...I could still make it for Laila's school and her first day of ballet but be out and ready for picture day and to head back to the great state of Michigan. It's all in the timing. Until I called and they said I had to come in tomorrow...and at noon. So there was the wrench and start the anxiety attacks.

Think, Cassie, think. As I was on the phone with Bruce (Bruce...really?) who I can only assume is another new nurse, I tell let him know that I will go in and thats fine but I warned him that I WILL be out before Monday. Hey, I know that you gotta do what you gotta do and yes, I know I have to give up somethings to win the war; but giving up some things in my daughters life now doesn't work. I have to be there to get her to her first ballet practice! Thats important to me! So I will fight and be a good girl in order to get out as early as possible.

Now to get everything done before I go in tomorrow. Another anxiety attack! After a few deep breaths and talking to my sister and Jeremy I am ready to start tackling my list. Most important...what to do with Laila since I can't be there and there are times that Jeremy can't be either! (Let me say I don't know how people who don't have the flexibility Jeremy that has can pull this crap off!) The texting and phone calls start. I will skip all the drama and tell you that Laila is covered with people to watch her. And really I will skip even more of the anxiety and tell you that I pretty much have everything almost done for tomorrow for myself! Today was one of those days I just feel guilty that I have to be sick! Tears a plenty!

With all that said I still have anxiety. I have things that run thru my Laila's life going to be crazy for those days? What if she needs me and I can't be there? What if she wakes up in the middle of the night and calls out my name? Will Jeremy get his work done?  And that is just the tip of the iceberg. But there are things that are getting me through these anxiety ridden fears. Like now I will feel better and for longer and maybe even feel good enough to gain some weight! Weight means being on the BIG LIST.  I want to be on that transplant list...NOW! 

So here is Tuesday before  my little "staycation" in the hospital and I'm tense and wondering what I am forgetting to do! But a nice sigh of relief because we JUST talked to Aunt Gwynn...she is coming tomorrow and making sure my family is settled and Laila will have her normal life and Jeremy can do his job. BREATHE CASSIE! BREATHE CASSIE! BREATHE CASSIE!

More to come from Madison...