A few days ago I read a blog who had read a challenge offered by Piper, over at A Matter of Life and Breath. She wrote an amazing blog post and extended a challenge to others to write about their thoughts on CF control and progression. So here goes...
As I have grown up always knowing full well that I had a disease called Cystic Fibrosis, I didnt understand exactly what that meant. I knew it was something I could die from, I knew it was scary, and I knew that I was, as they say, "beating the odds". I had ups and downs all through adolescence, I was always "sicker" than my older brother, but it wasnt until I was almost 16 that CF became a little more real to me. It was then that I had to go into the hospital for the first time. I was scared out of my mind. I worried that this was the beginning of the end. Oh how I was wrong, thank goodness! About 30+ hospital stays later at 31 years old I realize that my young, immature 16 year old self had no idea what lie ahead of me in this journey of life with CF.
I dont think I was ever in denial. I always knew I had Cystic Fibrosis and that death comes from this disease. I think that we can really only know what we have experienced or have witnessed other people experience. At that age the only other CF person I knew was my older brother and as previously mentioned he was always healthier than me. Growing up treatments were hit and miss. Compared to now there wasnt a whole lot to do. Take enzymes with meals, inhale distilled water through a big tube, (my brother and I would pretend the mist was death and try to kill each other. Awesome right?), and get our backs pounded on in hopes to loosen the yucky crud in our lungs. It was probably middle school age that I really started taking a great intrerest in my own health and began to be pretty compliant. I would miss treatments at night if I got home too late from a ball game or if I went and stayed at a friends house. I remember when I was 14 years old, a freshman in high school, I had to wake up at 4:30 every morning so I could do my medicine get ready and go to cheerleading practice. I was dedicated and determined. I went in the hospital about once a year, (after that first visit)on my terms, at least thats what I told myself. I felt as though I was in charge of CF. Oh how things change.
My last year of College I had a few very scary incidences. I began coughing up cup loads of blood. I had to be hospitalized and they embolized my lung. I was more scared than I have ever been. Thankfully, we got it under control. Soon after this experience I was married and began married life in a job that I loved but that was very stressful. I went in the hospital four times that year. My husband felt I should quit my job, but I was prideful. I was determined to show CF and everyone around me that I was in charge. It wasn't until I found out I was pregnant that I knew quitting my job was the only option if I had any chance of having a healthy baby. I was really worried about miscarriage due to the stress I was under.
After quitting my lung functions increased. My Drs were amazed especially because I was pregnant. At about 6 months that all started to change. If you have read any of my previous posts about my pregnancy you know what happened. Death has never felt closer. After surviving having my daughter I struggled in every aspect of CF, and life. I remember I had only been home a couple of weeks after spending a month in the hospital. I was so weak and frail that all I could do was feed my baby and do my medicine. That day in particular I had used all my strength to give Cambree a bath, she had maybe been out of the tub 30 min. when she vomited all over herself. I was devastated. Thankfully my mom came home at that time and told me to go shower and she would take care of the baby. I did just that. It was then that I was at my lowest point, physically, mentally, and spiritually. I remember thinking, "I don't know if I can do this anymore." I distinctly remember feeling that I had a choice. I could choose whether I lived or died. I also felt that in order to survive it was going to take a lot of hard work on my part. I chose to live! I don't think I have ever dedicated myself so much to something. I exercised 6 days a week and did 4 treatments a day. Even though I did this I went in the hospital 6 times that year. I continued to fight. It didn't seem that I had much control over anything. The only thing I did know was that if I stopped working I was giving up and death was imminent.
I don't know why I got to choose, I guess in reality by being compliant we are all choosing to fight. I have often struggled with why I was able to come back from where I was when so many aren't. I am so grateful that I was, but have often felt guilty for those of my friends that have not and have since passed on. It's hard watching others that we are close to struggle. It makes me appreciate that I am still able to do. It has been 7 years since that time. The progression of my CF has maintained pretty well. I only went in the hospital once this year. I do my medicine and take vitamins. Everybodys journey with CF is different. This is my journey/trial and I am trying to learn everything I can from it and do it with grace and patience. I definitely lack in both areas often. My brother who has the same mutaions as me has just recently had to start thinking about CF in a different way. He has only been in the hospital a handful of times and is 33 years old. That is his journey. Overall, my thoughts continue to change on the whole control of CF thing. I think that overall God is in control. I do think that we all have a purpose in this life and when we have fulfilled our mission/purpose it is our time to go. Along with that we have to take care of ourselves and do our part to be here and have the best quality of life we can.
These are my jumbled mess of thoughts. If you wish to take the challenge, read below...
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved one's.
Friday, August 5, 2011
CF Control and Progression
Friday, July 22, 2011
Any similarities?
Friday, July 15, 2011
Dance Review and Summer Fun
Sunday, July 3, 2011
Say What?
For years I have known I have a hearing problem. My left ear is much worse than my right. It's always been kind of a joke within the family. I'm all about joking about the many ailments of my body. After my last hospital stay in Feb. I noticed a significant change in my hearing. It was pretty concerning seeing as how I already had trouble hearing. My family noticed it too. Some conversations were getting frustrating both for me and whomever I was speaking with. I was also becoming slightly embarrassed having to keep asking people to repeat themselves, especially people I don't know very well.
I decided it was time to take the plunge and revisit the ENT. Especially ine my insurance covers them t the U of U hospital again. My appointment was on Friday. To say I was/am a little discouraged is an understatement. During the test I knew I was failing miserably. After the test the lady came in and showed me the change that had occurred within a 3 year span. It was significant, surprisingly on both sides. I had to hold back the tears. When meeting with the dr. We decided to do surgery on my right ear and patch up the hole in my ear drum. Hopefully this will help my hearing improve somewhat. We will see how that goes and then decide whether to try the left ear.
I'm quite surprised at how much this news affected me. I mean, come on, I knew I was deaf. There was no denying it. For some reason seeing it on paper and seeing how much loss has occurred in such a short time, well, I wasn't prepared for that. My husband asked me why I let numbers affect me so much? You see, with CF my lung tests are based on numbers. The lower the numbers the worse I am. I always tell myself don't go by the numbers it's all in how you feel. It's a lot easier to say than to always do. Sometimes I think I make myself think I'm okay. I think it's a survival technique I've come up with, pretend all is well until someone or some numbers tell you otherwise. So unfortunately I let the numbers affect me more than I like. I'm trying to not be discouraged. M trying to tell myself it will all be okay. I'm in complete denial that a hearing aide may be in my near future. And I'm trying desperately to ignore the fact that CF has yet again taken something from me.
Tuesday, June 14, 2011
At Peace
I still remember that hospital visit as if it were yesterday. It was January of 2008 and I decided to take this 2 week visit as a gift. A gift to take time for me and really search and ponder what was before me in regards to my future and my families future. I remember spending most of the first week just reading. Reading scriptures, talks by General Authorities, and my past journals. I rarely had the tv on which was very different for me. I usually had that thing on even if I wasn't watching trying to rid myself of the quiet. This time I welcomed the peace. I remember one day deciding that rather than pray, I was going to listen. Whatever popped into my head I would write down. I still recall what I wrote down and am amazed at how it's all worked out so far.
I remember finally, maybe for the first time since Cambree was born, feeling at complete peace with my family and our situation at the time. Ben, Emilee, and Cambree, the three Musketeers, the three amigos, threes company. We together could take on the world. I felt complete joy for our little family and all that lay ahead of us. For years I had struggled wondering if there was another child for our family and for years the answer that came was always the same, I'll let you know. At that moment I felt He was letting me know and then something came over me that I cant describe and the thought came, you need to have another baby. Confusion is a word that can't begin to describe what I felt at that moment. How could I finally feel peace about my family and in the next moment feel as if there was another one needing to join us?
I have since learned how the Lord works with me. He gives me peace and then he fills me in on the journey he has set before me, stone by stone, brick by brick it begins to unfold and this is when my journey for Lawson truly began unfolding. It took years for me to fully understand the way the Lord works with me. It also took a lot of second guessing myself and wondering if those thoughts were my own or from a greater power. As it has been fulfilled with many tears from fear, humility and gratitude I have come to know my Savior and Heavenly Father in a new way.
The peace that comes from our Savior is real. He is real! He Lives! He wants us to have joy and peace and love beyond measure. I am so very grateful for this knowledge and so grateful for the power He has in my life. I look into my sons eyes and I feel the presence of the spirit in my home continually. I have joy beyond measure and I wonder to myself, how is it possible for one person to have every wish they have ever wished be fulfilled? I truly do, and I could not be more happy than I am in these moments.
Monday, May 9, 2011
Cambree Turns 7
I cant believe that my baby girl is 7 years old. It feels like yesterday that we brought her home without a clue what we were doing! I think so far we are doing a pretty okay job. She is the most amazing little girl that I know. She surprises me everyday. Some good, some not as good:) I love how beautiful she is. She has a beautiful soul, the love and compassion that she has for others amazes me. She is friends with anyone and everyone. She gets along pretty well with everyone. One minute she'll be playing with her cousins her age and the next she is playing with her 3 and 4 year old cousins. Im so proud of her and so thankful that I get to be her mom. I think she is turning out to be a pretty spectacular little lady, even if she is a little sassy at times. I love you Miss Cambree Malli!
Thursday, April 21, 2011
Time
It's amazing how time works. My thoughts this past week have been turned to two things, both involve getting each child here. A year ago at this time we were getting ready to transfer our beautiful embryos into my angel sister in law. Seven years ago at this time was a very different story...
I know, every year I revisit the greatest and most challenging weeks of my life, so if you're tired of reading about it stop now.
I don't know why I feel the need to relive these events every year. I believe it is because I am still, and will forever be in awe at the grace of God.
The moments that have brought my children into this world are nearest and dearest to my heart. It is through these events that have shaped me and shaken me to my very core. They have brought me closer to God and my Savior and shown me with God all things are possible. I have learned just how strong and determined I am with the help of his love and grace.
I wont say the past 7 years have been easy, they haven't been. Fulfilling? More than I ever thought possible.
I remember coming off the vent for the first time and being wheeled from ICU back to my regular room. They wheeled me from my room in my bed and as I was about to head through the double doors I saw one of the amazing doctors that had helped save my life. He saluted me. I've never been saluted in my life and probably never will be again. It was a very poignant reminder that I had survived, I was a fighter and I was going to continue fighting. From that moment on I have vowed to go through this life and this disease fighting with everything I had and hopefully doing so with dignity and grace.
If someone would have told me 7 years ago that I would be where I am now I'm not sure I would have believed them. I had Drs telling me I'd probably never get off continuous oxygen, that I would never have another child, and that I had a 50% chance that I'd live five years. The older I get and the more I learn I realize I never should have been able to do any of these things. But I did. I survived, I'm still surviving; I'm still fighting. Believe me, I know it is not because of me that I have been able to do these things, but through a loving Heavenly Father that allowed me to live if I was willing to work for it. Words will never describe my love and gratitude for him allowing me to be here and raise my children. The past 7 years with my beautiful daughter have been more amazing than anyone could have told me. Now being a mom of two I never knew my heart could love so much, so deeply. I understand more fully the love our Heavenly Father and Savior have for us. I would have given my life for my little girl if it was asked of me, I'm just glad I didn't have to.
To read more about bringing Cambree into this world read here
