How to feel?

A nice weekend to just forget everything before the big crazy 2 weeks comes up. Thanks to a fun night out of Friday, shopping Saturday and a nice relaxing Sunday...it was exactly what I needed!

I had a doctors appointment on Friday and I do have to say I am so glad that it was so close to my eval because it calmed my nerves down a bit and let me know where I stand and a plan of action for after. Now the bad news is I only way 96 lbs and I still need to gain about 8 lbs to get my 18% BMI...but I am prepared to fight as hard as I can about that. And I am not the only CFer who is underweight or ever will be during the eval. Brooke my NP told me that having a GTube will help me with this fight. Now for news that stinks even more...my lungs are down to a 22% FEV1. Ugh another 4% lose and it only took a month to do that.. I am on orals still and now will be getting a tune up again after eval (or during...) My lungs better get their act together or I will give them the boot faster than I thought...warning.

Brooke did help me calm many of my nerves down about the process and my fear of rejection. She did say my eight would have to go up before I qualify and there may be something that I have to do before I can be on the list. Some "hoops" to jump through, but she also told me not to get discouraged about that and to stay with a good goal in mind.. I am getting mentally prepared for that. Crazy how most of this is all mental, right?! But as one Fibro says "One of the most important parts of being healthy is being mentally healthy to accomplish all you have to do to be physically healthy." Yes, that is so true.

These next 2 weeks are going to be crazy busy. And I am so many emotions in 1 that I can't even say what they all are...excited, happy, nervous, scared, sad, ready, not ready. And thats just the tip of the iceberg. I want to not thing about those two scary words this entire week but its like HELLO they need to be the 2 words that I think about all the time. Well, that and "food" too. But I guess that big Zell motto comes up and takes charge..."You gotta do what you gotta do when you gotta do it." So this is just what I have to do no matter how I feel or how others feel.

At least the madness is keeping my mind off stuff. And Hail yes, I have the Wolverines winning it all. GO BLUE!

Tomorrow is another day

Today was one of those days that I wanted to punch CF right in the baby maker. UGH. First things first...the picture above (which I took from another Cyster on FB!)  These are different xrays of lungs with CF... the white is still functioning lung and the black is all dead lung. The last one is working at a 35% and mine right now are at a 26%. So you can imagine how much white vs. black I would have on my xray.

I re-read my eval stuff and wrote questions down for the many people I have to ask: coordinator, my NP, my insurance. I just pray it all works out and I do things the way I am suppose to. The antibiotics that I am on are starting to break things up and dry me out...good news. But the coughing and feeling of not being able to breathe is getting to me.

I was cleaning the house today and just pushed myself to the point that I needed to sit on the ground in the room I am cleaning and just breathe. Thats all...just breathe. And I thought to myself, "remember the days when cleaning was simple. The days you could run and play softball. The days that a trip to the mall was easy. The days I knew what oxygen was like all the time. Part of the question during the lung transplant process is : Can you live your life the way it is (health wise) and why was today a day I questioned it. Its hard to do the little things. Granted I feel I am pretty strong seeing as only 26% of my lungs work and I am still not on oxygen and continue to try and lead a normal life and do normal tasks. But really...can I imagine living a life with having to stop and just take a few moments to get oxygen in a place that normally should be no challenge to do? DEEP BREATHING.

I am so sorry that I am sick and that it hurts many of you to watch it. II am not sure how I would do watching somebody else go through it, if it was Jer, or Laila, or Angie, Tay, my Mom or Dad, my cousin, aunt, uncle...I dont know. But I am living it. I am suffocating. I am sorry if the word terminal or the picture above is too much for you to handle. LISTEN...its reality. Thank you to all who are staying by my side and fighting this with me. As Tay said today "unconditionally."

Tomorrow will be a better day, and tomorrow I will go on with my life and my fight and try a little bit harder. I am not going to let CF get me. I can't. I don't want to. I want to show you all I am as much as a fighter as you think I am. I want to show Laila her mom may be small but she packs a powerful punch. I want to show Jeremy he married a strong girl. I want to show my family I want to be here for them.


On my ipod:

Girls Just Want to Have Fun  by Greg Laswell
Blackbird by Evan Rachel Wood
Timshel by Mumford and Sons
Skinny Love by Bon Iver

Its closer...

Look at that little lady...she is growing up way too fast! I love her so much.

Today I got my lung transplant eval packet in the mail. Wow, it just seems more real. I have read it 4 times and I still feel the need to read it a few more times to make sure I know what to do when. I have my itinerary all laid out for my and those four days and it I am so glad to be able to see it on paper and know I can look at that page and know where to be.

 I am trying to not to worry to to just let it go and not think about it. I am trying to just concentrate on eating and taking pills, exercise, playing and enjoying Laila, watching TV with Jeremy...just normal things for my life. But let me be honest and tell you that I have had a few tears today, scared tears. Look at that little girls face up there, would you want to do everything you could for her? What happens if I fail? 

Jeremy and I sat down and just looked at everything I (and we) will have to do those 4 days and I am just looking forward to it all being done. The days will fly by and they are shorter than I have originally thought, thank goodness. I have to do things such as: get labs drawn, go see a dentist, heart cath, ekg, health pysch, xrays, iv, and the list goes on for a bit. 

I am just remaining the person I am, and trying to get all my fight back. I am so close!

Just keep eating. Just keep breathing. Just keep fighting.

A great weekend

So you may ask...did I have fun at Karaoke for a Cure and the events while I was home?! Did you see the 2 videos on Team Cassie's FB page. I think you know my answer; YES! Haha, maybe a little too much fun...

K4aC went really well and it is always awesome to see so many people I love show me their support and show up. I guess its easy when we are talking about wings, beer and entertainment. But I saw so many awesome people there and got to have so many good convos, plus I only cried once! Laila did her best and got up to sing 3 songs and knocked it out of the park. True Zell blood in that little girl, give her a mic and the shyness disappears. And I think the Harlem Shake video speaks for itself.

Just wanted to thank everyone who came and for everyone who worked so hard to put it together (Ang, Dave, Mark, Ryann, Buffalo Wild Wings...just to name a few!) Here is to another great year of events!

The drive back to WI went well. I made awesome timing and Laila was the best she has ever been. Thats momma's girl. Jeremy was excited to have us back and we were glad to be safe and sound and on the couch watching Cinderella again. 

But with so much fun comes the bad part I guess. This morning I coughed up more blood (not as bad as last time but enough to make me upset) and when they checked my oxygen at pulm rehab it was staying at 89% while I was just sitting. So SIGH they sent me home without a work out...I know it was best because I needed to make sure I healed whatever that was and it worked  (knock on wood) because I haven't coughed anymore up. But I did call the doctor and was put on antibiotics to make sure whatever is sitting there doesn't get worse. This lady for sure doesn't want to end up in the hospital for Lailas birthday, Easter, or weeks before my eval. Staying healthy is a full time job.

Well, seeing as I have to gain weight, I guess I should go eat before I hit the hay. 

Staying positive!

A month and I am still me

So excited to be back in Michigan and getting ready for Karaoke for a Cure. YEAH I really do hope to see so many of you there. 

I looked at the last time I wrote a blog and I was shocked it had been so long. But I suppose that can just go to show that I have been feeling well and just doing my thing. I have been busy with my camera and just still as geeked today as I was the day I got it. As a matter of fact I have like 4 shoots "booked" for the next couple weeks. Hello my favorite hobby in this world.

I have been feeling pretty good (besides that fact that it was hard to breathe today and my chest is a bit tight. I suppose the MI excitement cam do that to a girl.) I went to Pulm Therapy yesterday and my number were back up to 95 and my heart rate and recovery were much better as well. CF has nothing on me right now (knock on wood, right!?)

I have been taking it easy and trying not to over due things physically and emotionally. So if you are at Karaoke for a Cure tomorrow and I am sitting and minding my business  its only to just breathe and pace myself.  It only took 30 years but I am starting to know how to listen to what my body tells me to do...FINALLY! Luckily I have been having a good support system.

Its less than a month and my eval will be here and done. But this weekend I will not be making that part of the front burner, having fun and raising money is. I still can't put it in words how I feel about going through this. I am sure many CFers can relate. There are too many emotions that it really kind of seems like there are none (this makes sense in my head at least...) Jeremy and I have everything planned for that week and I am just waiting for my packet in the mail to tell me where to go when and what to wear etc etc etc. Just breathing about all this still, thats all I can do and thats what I am learning to be OK with.

Angie came to MKE for awhile so that she could help me road trip and it was a fun trip...including Arbys and lots of laughs. There was a laugh I kind of forgot I had...guess memories and stories of your sister in pain will do that to a person (haha love you Ang!!) I am gonna miss her 2 day trips now that she got an awesome job.

Well even though this is short and sweet and I am sure I have a long list of things I should be typing...I just, well, if I am being honest...dont want to because I want to go to bed. Yeah I am that lame. But this girl has a busy weekend and full of some many people. Hand sanitizer will be flowing tomorrow (no offense but you guys have GERMS!) because I have to stay as healthy as I can now.

Building a stronger Cassie everyday!

I can still be a fighter!

So I was pretty excited to do rehab this morning. I was up before my alarm and really wanted more oxygen to get in my lungs and new my morning workout would do the thing. Well, it did! I was at 90% going in and left at 93%...so it was good! But I wasn't feeling that awesome so they didn't push too much (my heart rate was crazy high before I even started...eesh!) I took a good 10 minutes of me sitting there before I could even start. But hey I started and my lungs got some good stretching!

Jer Jon is really sick and has been all weekend. It past noon and I haven't seen him yet because he just can't wake up. And every time I go check on him she is still snoring so I don't bother him. Poor boy! But it sure has been hard to keep distance, but I am pretty sure if he even looks at me I will catch this nasty cold so we stay on opposite sides of the house! I am not used to being the this end of the sickness...being a nurse seems to work better for me! Sorry Jer!

Valentines Day was nice, we stayed home and made a wonderful dinner and then went out the next night. So we celebrated a few times! And Laila gave me a card and signed her name almost perfectly (even though she said she couldn't be my valentine because she wanted to be Archie's...my parents dog. Gee, did I feel love!) But really it was a very nice day!

The awareness of CF and Team Cassie is so out of control (in a totally good way!) and it has been so nice to get to know so many cysters and fibros. Plus I have had so many messages from people with encouraging words, or just to tell me there story. PLEASE KEEP IT UP! There are a few that I am so looking forward to continue to watch their stories! Thanks to all of you who have done their parts! And I am not sorry if it annoys you to see my post over and over :)

I am very much looking forward to the next few weeks and I am for sure going to try extra hard to keep myself as healthy as possible so I don't have to miss a minute of it. Rehab has really helped me out and makes me feel like I could finally do this transplant thing. Just another month and a half and the eval will be here. Just breathing and eating until then. 

I am becoming the old me again slowly and I can not say how wonderful it feels. I am getting a little bit stronger both mentally and physically. Lets hope there are no more set backs.

Fighting my fight!

Thank You

Wow, I didn't know 1 picture could have such a huge impact. 

It is so weird to see my daughter holding this sign with the word TERMINAL on it and know its her talking about her mom. She is right, she is too young to know what I am fighting for. But she knows that I love her just as much as she loves me and I will do everything to make the terminal thing wait as long as I can...heck maybe even not see that part of it because a cure could be found!

I want to thank you all for taking the time to share this picture on your Facebook pages and help get the word out about CF.  The thing is, the more people who know about the disease the more awareness and the more donations come in (and more support which is crazy how much we need when we are so sick!) Many of you know the CFF relies on all of the donations from people like you and I. Without you I wouldn't still be alive.

My family and I are working hard so that I can live long. That means getting the word out so please continue to do so! One "share"...your share...could be the share that reaches enough people to help fund new medication, therapies, and one day a cure. You can save lives, my life. 

I was fortunate enough to be able to tell a little bit of my story at a CFF event in Milwaukee and I wanted to share a part of it with you:

 "When I was born, my parents were told that the average life expectancy of a CF child was the age of 12, but that did not stop them from setting goals in my life and to make it as normal as possible. They wanted to see me crawl, then walk, then talk. I did. They wanted to see me toddle off to my first day of school; I did. They wanted to see me take my confirmation vows. I did. They wanted to see me attend High School and graduate; I did. They wanted me to enjoy sports and the camaraderie of classmates. I did. I played volleyball, basketball and softball until my lungs refused to let me. And of course, my parents wanted to see me outgrow my adolescent rebellion against this disease when I refused to take my treatments or pills.

They wanted to see me go forward with life and anticipate that I had a future at the age of 18 while life expectancy at the time had only climbed to 24 years of age. That was a huge challenge for me and a big problem for so many CF victims at that age. Why sacrifice and invest in a future that most likely will not be there, so many of my peers (gave up and failed to prepare for any future. But I had some special help, my parents, so I attended college and graduated with an Associates Degree. Then, what even my parents had not fully dared to dream came true -- I fell in love and was loved back by a remarkable man, Jeremy. And to top it off we were blessed with a miracle 3 years ago, a miracle we named Laila.

She’s healthy, she’s beautiful, she’s a handful, but she is a precious treasure and gives me purpose and goals in my life. I want Laila to have a mother to dress her for her first day of Kindergarten. I want Laila to have a mother who can heal a boo-boo with a single kiss. I want Laila to have a mother who can cheer at her basketball games and yell at the ref when she is fouled. I want Laila to have a mother she can cry to when some rotten boy breaks her heart. I want Laila’s mother to hug her on her wedding day and tell her she’s the most beautiful bride ever. I want her mother to be there to tell her that her newborn baby is adorable and looks just like her when she was little. I want Laila to have a mother and I’m sure she probably will. But what I really, really want is to be that mother! That means I need your help. I want a cure.

It’s close. The cure is close. The reason I have lived this long is because of people like you, people who care and are willing to share more than their sympathy. Let’s be honest. Neither I, nor any other CF victim wants your sympathy or pity. What we really want is money, because money translates into treatment and a cure. My health depends on my Lord Jesus Christ, and as He often does, my Lord uses the generosity and love of others to accomplish His miracles."

So again, thank you from the bottom of my heart (and Jeremy, Laila and my family thanks you too!) So lets keep this up and make CF stand for Cure Found!