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It is about 2 in the morning and I guess I just can't sleep. So why not sit here and write a blog, doesn't everything always make more sense in the middle of the night when you are tired...haha.
The fundraiser at Faith and Giggles went very well. And now that I am done speaking in front of people, I am looking forward to the next time I can do it. HAHA, oh boy. But, yes, everything turned out so nicely. And one of the best things is I got to know Wendy and Jason just a little bit more. I am not sure you could find 2 people who are so giving and using their "resources" to help others. They own a store and are always doing something in there beyond selling some good products. If you live close enough you really do need to check this little store out and see for yourself what I am talking about. (And even if you don't live close you can always check out their Facebook page and show them some love with a "like") It was awesome to see so many of my Peace family there and asking questions in order to understand CF and also my personal story. I am not shy about answering questions and will be very honest...the more people know the more awareness is out there. So keep asking! In all honesty like I said I want to thank you both and to the rest of "Team Cassie" of WI for everything you all did for this event (and for the things to come) we appreciate it more than we can probably say.
I have been off of IV antibiotics for a little bit now and I am slowly getting the crackles in my lungs, coughing a bit more, putting O2 on, and just need to breathe a little deeper. My summer is too busy and my legs are too white for all of this. The whole "healthy girl stuck in a sick girls body" shows through more and more. I could have plans all summer (and really I do) but know that I will need to get some more meds before it is over. So I better think of the best time now. It is one of those things that I am going to have to sacrifice in order to have a better future and win this war. Or how about I just get new lungs and all of my summer can be me healing...screw all the plans, right?!
But I am not going to think about that this entire week, I am just going to keep on doing what I need to do so the "band aid" can last a little longer and I feel great for whats to come.
I had a great break this weekend! My mind was able to focus and stay busy enough that the phone wasn't the most important thing (but to clarify I did have it everywhere and I still made sure I was able and ready to get the call...plans in order and everything!)
It started on Thursday with a date. A mother/daughter date...all day just me and my little curly haired love. I really want to make sure that until I get the call her and I will be able to spend time like this together. I think in the long run we will both need it! But anyway, I took Laila to the zoo to see all the animals. She was in heaven. If you ask her she will tell you that she got to go to the "real zoo"...not sure whats that means, but whatever it is, its a big deal. We ate lunch, saw every animal (but not the reptiles because EEK!) and I walked the entire thing without oxygen and only stopped twice to catch my breath. She loved the zebras and giraffe, and just to let you all know, according to Laila a gorilla is not as big as Daddy. It was just a fun day!
Nick and Theresa (my brother and sister in law) came for the weekend to give us a little breather. We stayed home Friday night and played games, talked, and some of us ate ourselves into a food coma. (Ok, so I may have been the only one, but thats ok!) And then the party started on Saturday! We started off at Lakefront Brewery (never been? I suggest it!) followed by tailgating, bags, and a Brewers game. I haven't just been able to be myself like that in awhile. Jeremy and I smiled often that day. And just to top the weekend off we ate at Perc (little cafe/restaurant in town) and they had some amazing biscuit and gravy going on. Again, I ate myself into a food coma.
Thanks for coming guys!!
Now I am sitting on my couch debating what to do since I don't have Laila for the first half of the day (she is at her very first sleepover...thankfully Connie knows how to handle her...) I should be working on my speech for this Wednesday, but my bed, pinterest, cleaning, and the mall all are calling my name. I feel like the bed will probably win!
But I would be silly if I didn't say that this Wed and Thursday Faith & Giggles is having a fundraiser for our hospital bills for the transplant. Check out there FB page and check it out: https://www.facebook.com/pages/Faith-and-Giggles/255897834453365?fref=ts
So thanks to them and Peace for everything they are doing for us, it truly is humbling.
Being a strong person is a gray area. What exactly does it mean to be a "strong person?" Is it that you do what you gotta do when you gotta do it? Is it that you hold a warrior stance in front of other people? Is it how you can act ok and then go home and have your moments? What is it?!
Those who truly know me know that I don't think myself a true fighter. And now I am here to tell the rest of you that its true. I am not as strong as people think, as I show on the outside. Yes, I can go and do the things I have to do when I have to do them. But I go with much anxiety, frustration, and hatred for this disease. I go to get it done, hoping tomorrow is the day the cure is found. Then I go home or get done with what it is I am doing and tear up wondering if I did the right thing. I never know if the choice I make for my CF is the right one, I just know I will try anything to live a little longer and hope to make the future a little easier.
I feel CF is robbing not only me of a life, but my daughter of a good mother, a husband of a wife, and my family of yet another member. I want Laila to have a mom who can run and play, not look at her and tell her since I showered and cooked that now I have to sit tethered to 3 or 4 tubes/machines in order to be able to have a good rest of the day and week. Thats sad. Plain and simple...sad. Jeremy has to pull triple duty on days and be the bread winner, dad, and mom. That isn't fair. He deserves a break.
Today is a rough CF day, not because I am feeling bad, because really I am starting to feel better thanks to my at home nurse, Jer, and my meds. But my life is hard to watch sometimes. And thats crazy to me. I remember the days of somewhat health and I want them back, and even better than I had. I have said it before and I will say it again...I am a healthy person stuck in a sick girls body. I want out of it. I want to break free. And the thing I have to look forward to is a transplant, a terrifying thing. And that not even a cure. At best, it will help a great deal and give me a few more years here on earth to make sure my daughter learns what a mother needs to teach her and that my husband knows he can do things even if I am not around! Gosh, i just hate this.
So is that being strong? Is just being glum being strong? These are the moods that just make me wonder how much longer I can be a strong fighter. Not that I will ever quit the fight or stop trying, but how much longer will my body and emotions let me. This is me...not a strong person. But one that has so many weaknesses that I try to hide behind a strong face. I have been taught that I can't tell people I am OK when I am not, when it comes to CF I have to be honest with where my health is. Not only for me but for everyone.
So, yes, I am sick. I am suffocating. I am slowly watching my body go under and see how it affects the people close to me. It hurts to watch my daughter be sad because I can't push her on the swing or just play in general. It hurts to watch Jeremy look on not knowing how to help. It hurts to think of what I was, of the energy, lung capacity, weight, personality that I once had. No matter what I could prove the doctors and everyone wrong. Stubborn in order to survive and beat all odds. That was me and the one I am trying to find deep inside. She has to be there still, right?! She is buried in the burden of CF and sadly I am not sure how to find her. The pressure and the waiting is eating me alive, consuming me.
Being strong...I need to figure it out.
I know it has been way too long. I feel bad because I got a few phone calls and texts to make sure I am ok since I have been so MIA. I am fine, just been cleaning, relaxing and doing some IV antibiotics through my port. I am still not sure how I am feeling about my port. I figure as long as I have it it will always just be a love hate relationship.
Life has been interesting already in the 1 month that I have been on the list. My house is getting super clean. My anxiety is getting better. I am getting homesick. I am spending a ton of time with Laila and Jeremy, and waiting for all the company this next month. Its awesome having such a cool family.
I still get anxious when my phone rings and it has happened twice now that the phone number has been a Madison area code when I answer...thinking its going to be the call! Well, obviously neither of the have been the call and both times I have had a small panic attack afterwards. Anxiety, fear, relief, tears, and just quiet. How do people do this? How do people survive the dry runs? If I am like this when the call isn't really the call...what am I going to do if its a dry run. Luckily, this last time Jeremy was with me to help with the nerves and get me back to reality. Good advice of, "Take a deep breath, your life is exactly the same as it was 2 minutes ago. Breathe." I feel I will take those words with me during this waiting period.
I am still enjoying the love that is my camera and had a model this weekend fly out and let me spend all day getting lost in Washington County finding fun spots to shoot. I think it is time to buy a tripod so I can have a little fun too (granted Angie did take 3 pics of me and offered to take more...but I wasn't feeling it because I am having some problems with me lately.) Here is one of the pics I took of my sis:
It is amazing how life can change and not change all at the same time. Even though I have been taking time off, I feel I have nothing to report, nothing of interest. My lung function was a 20% and that number is very scary. Only a 20%...like my lungs could quit because of the work load of only working at a 20%. So needless to say I am trying to take deep slow breaths and put the oxygen on to help with that workload. But I suppose there is not much else to do but make sure I stay on top of infections, try to eat, rest and relax. (Meaning my nails have been looking AWESOME lately!!)
They taught Jeremy and I how to access the port ourselves, so Jeremy felt very cool being able to pull a needle out of me and then later wearing a mask and gloves to stick a needle back into the port. I have to give him some big props because he did an amazing job, it didn't hurt and it went straight in (more than I can say for when they did it at the hospital!) Plus the guy does it so calmly and without question that it makes me feel so confident and relaxed myself. I believe that God gave me him because there aren't too many people who would be able or willing to do the things he does for my health. But not only does he do them no problem, he does them without question. He does them with the motto that we have all held onto, "You gotta do what you gotta do when you gotta do them!" Plus, not only did the man take Laila with him to the store so I could have a few minutes by myself, but they brought me back a Culvers shake and a hag mag so I can pack on the pounds and feel better. AWWW! Thanks Jer Jon!
