Monday, February 18, 2013
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!
Friday, February 15, 2013
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!
Tuesday, February 12, 2013
I have my Laila back!!! And even the little things that drive me nuts were so cute and funny those first 24 hours. Gosh, I just missed her. She has been a true mommy's girl since we got her back. She hasn't been far from my side (besides today when I met with Kelly from the Cystic Fibrosis Foundation...good things in the work for Cassie. This I hope will be the subject of another blog in the hear future...exciting!)
Aunt Gwynn came and stayed the last 2 days and it was a joy to have her here and help me learn how to sew! I made a dress for Laila (with just a teeny tiny help from Aunt Gwynn) and now just have to wait for summer to put it on her. She may have also made and left a pecan pie, made from scratch, at my house for me to eat. Yeap, she is helping me pack on the pounds. I also want to thank her for helping make Laila's snack for tomorrow and for helping with everything she did. Heck, she even made me 2 more "back-drops" for my at home photo studio. You should all see the good set up I have. In one word G.H.E.T.T.O! But hey it works for what I need/
I have plum rehab again tomorrow and will be bringing my IPod again. Because I realized that "Radar Love" not only makes my Dad drive fast, but it makes pedal pretty stinking fast on the bike. I worked harder and faster and the time just flew by. Sweet mother of all its nice.
Still just breathing (and eating!!)
Saturday, February 9, 2013
Yesterdays Dr. Appointment went pretty well.
I blew a PFT (measures how much of your lungs are working) of about 26% (which is up about 4% and down 3% from Sept.) So needless to say, I am still not healthy but still healthier than 2 weeks ago. My eval remains in April for now and I couldn't be happier about that. I still have a month and a half to get my act and body together!!
My PICC got pulled and I am thrilled to be able to have that arm back. But man did it get beat up. I have never seen my arm so black and blue and just scrapped up from it. Which you can guess meant Cassie told her NP, Brooke, that she was going to get a port (hold your applause those who have been telling me how wonderful they are :) I am still not too excited about it!) So I will be going under a little procedure either in a few week or after my next exacerbation. So now I have to decide when to get it and if I am ready for in next week or not.
My brain is just having a hard time catching up and coming to grips with how sick I really am...and how quickly it did and has and will it went down. I am just trying to stay strong, positive, and healthy for as long as I can on this side of the transplant. That way the other side will be "easier" and longer.
I also gained 2 lbs in 2 weeks and I think its from the chocolate shakes I have been obsessed with. As a matter of fact, I am pretty sure after I am done here I may just need to go get one! (Don't tell Jer I am going to Culvers without him!) My appetite is still not wonderful and I know that I could easily skip meals and snacks...but I have been trying to make more of an effort not to. And more of an effort to remember to take my pills...you would think after nearly 30 years of needing them that I wouldn't be able to forget them. HA not true!
I hope all of your Saturdays are fun, relaxing, busy...whatever you want them to be! Today is my last day without Laila, so I am trying to relax and still get a crud load of stuff done. But YAY I am very excited to be getting my little "goose-ball" back. (Not sure how thrilled she will be leaving Ge, PaPop, Aunt Ang an Arch...)
Breathing is such a good feeling.
Thursday, February 7, 2013
So I did it...I did a selfie portrait session (and Jer Jon joined in too!)
I am so absolutely homesick for Laila. Yes, it has been nice to clean, rest up, eat a ton, sleep, and just all that without having to worry about the little. But boy, I miss her! Jeremy and I talked about that yesterday (during that a very funny convo we had...my FB friends know which one I'm talking about!) What would I do without my little world?
Guess what tomorrow is?! PULLING OF MY PICC DAY (fingers crossed!!) Please say an extra little prayer that my PFT numbers went up so that my lung transplant evaluation can stay put in April. I want that extra month to get my body ready for it. I am feeling so good that I just don't want to go backwards, even emotionally. Tomorrow will be a good day and to celebrate I will get a chocolate shake!
I have been feeling so well this past week that my house is looking pretty good and will only get better once I have full range of my arm again. Speaking of having range in my arm, I am going to ask more about the port tomorrow and figure out if its really the way to go. Thanks to everyone who has sent messages of encouraging words about this. It really has helped listening to what you have to say!
Still in control and getting more of my fight back!
Monday, February 4, 2013
Ok so do I have to admit that once I am out of bed and at Pulm Rehab...I have been enjoying it a little bit. (My legs have not though...I still have jelly legs and I can feel them tensing up from this mornings workout!) I like to know that my lungs and body are getting what they have needed for years and that I am monitored in case I need a hit or 2 of oxygen. But I think I may start to go to a real gym and maybe drag somebody with me! Anyone what to sign up?
I went in this morning and my oxygen was at 96%...ummm I didn't even know I could see anything past 93%! Yippee! I walked on the treadmill for a good amount of time (you would all laugh at my "good amount", so I will keep it top myself) and I didn't feel like I was about to pass out. I guess good medicine, rest, exercise, and some food will do that for a person. My eyes feel open...I know that probably doesn't make much sense to most of you, but if you saw me when I was sick you would know EXACTLY what I mean. Maybe I will have to set a little self portrait session tomorrow.
I am missing my Laila girl but it has been so nice to be able to start to feel better and get to the best I can...all my attention is on taking care of myself right now and I don't feel guilty. She is in heaven, she told me very excitedly that she got a chocolate chip cookie after dinner cause she ate so well. I love her little voice. And thanks to Angie I get at least one picture a day of a very silly girl. Thanks Angie, Mom and Dad!
Jeremy has been enjoying his little vacation too and I am lucky enough that he stays up late to keep me company while I hook up before bedtime. He is so willing to do just about anything (besides change my PICC dressing...thanks Bobbie for doing it for me!) to make sure I am comfortable and staying as healthy as I can. Thanks Jer Jon!
This week I just feel like I am in control of my CF again!! Little miracles!