My Moments to Breathe

Sunday, March 24, 2013

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 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 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!

Monday, March 18, 2013

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

Saturday, March 16, 2013

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.

Monday, March 11, 2013

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!

Wednesday, March 6, 2013

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!