CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Year #45 Locked and Loaded!!

    Happy Birthday to me!! I’m 45 and STILL alive!! When I was born in 1980, the idea of me making it to 45 was not even in the distant parts of anyone’s mind. That was my reality. My parents never treated me like I was on “limited time.” They let me live my life like a “normal” kid…who just happened to get sick often because of CF. I made all the “normal” kid memories of hanging out with friends, fighting with my older brother and his friends, going to school, dating, driving, high school football games, getting my first job and much more.

    I’m very thankful I was NOT kept in a bubble and I was able to live a reasonably normal life. I was taught to use common sense when it came to germ control (as any normal human should) like wash your hands, cover your cough and don’t eat or drink after others for starters.

    I have some friends with CF whose parents really kept them from being able to experience things in life out of fear. I understand the fear because it’s a given to be scared when your kid has an incurable genetic lung disease (which affects much more than just the lungs). You don’t want to lose your child at any age, let alone at a young age. I say all of that just to reiterate how blessed I am to have made it to my 45th birthday.

    People often say to me, “How are you so positive all the time?” First of all, I am NOT positive ALL the time. Just ask my husband. haha. I have always lived a life of gratitude and thankfulness for every day that I am alive, no matter if it’s a good day or a not so good day. My life very well could have been cut short at any time over the last 45 years. I have plenty of days where I don’t want to “do CF anymore.” I would love a break from CF but obviously that can’t happen. At a young age I made the choice to speak life and positivity into the universe no matter how crappy of a day I was having. If I only focused on the negative things I would drown in all the negative thoughts. Sitting in the negative for an extended period of time just isn’t who I am.

    Trust me, I have days where it’s very hard to see anything positive. I’ve been known to throw a grown up tantrum…with all the kicking and screaming just like a toddler. Of course I question, “Why me? Why do I have to have CF? Why do I have to live the sick life?” Questioning things will do nothing except make me more upset because I have no control of me having CF. CF isn’t going anywhere. I have to make the best of my life with CF, in spite of CF. You will waste years of your life worrying about things that are out of your control. All you have control over is how you handle to situations your given, good or bad. Make the best of a crappy situation! Learn to laugh at yourself. You don’t have to take life so seriously all the time. Have fun in life. You only get once chance to live your life.

    Also…if you didn’t know, the age you turn on your birthday is really the age you just completed, not the age you’re starting. After 1 year of life we say we are celebrating our first birthday but we are really starting our second year of life. Are you mind blown?? haha. No matter what, celebrate yourself and love yourself every day! Here’s to another year on earth for me!!

    Until next time…

  • I Got Paroled From Lockup (aka the hospital) Yesterday!!

    I signed my parole papers around 5pm yesterday. Unfortunately, Walgreens took longer than usual to fill my pain meds and muscle relaxer. I didn’t get to take another dose of pain meds until 9pm. I had to play a bit of catch up to get the pain under control again and a bit more tolerable. It is very hard to find a comfortable position to sit or lay in. Obviously, I can’t lay all the way flat because I will cough a lot AND it will take a lot of core muscles to get back upright. You don’t realize how much you use and rely on your back core muscles to move and lift yourself until your back is cut open. haha Every position feels like it’s pulling on my incision which of course hurts. Obviously, they had to cut through muscles to get where they needed to go. With that said, my back muscles are pretty pissed off right now. My incision is about 4 inches long and is smack dab in the middle of my tattoo. It may no longer say “Never Give Up.” We shall see once it’s healed. haha.

    Being restricted from “BLT” as my aunt calls it in her occupational therapist world is hard. “BLT” stands for Bending, Lifting and Twisting. For instance, when I drop something I can’t just bend over and pick it up. When I need something that is in a drawer below my waist, I have to ask someone to get it. This whole relying on someone to do simple things for me is hard and it’s only the beginning.

    My restrictions are as follows…no BLT (bending, lifting (more than a gallon of milk), twisting) for 6 weeks. No running, jumping or impact exercises for 3 months. But let’s be honest, I NEVER run or do impact exercises so I’m good there. haha. No driving for 2 weeks and obviously no driving if I’m still taking narcotics for pain control. They said If I feel comfortable enough, strong enough and I’m not taking pain meds I can drive before the 2 weeks are up. I have a follow up appointment with the neurosurgeon 6 weeks from surgery day, which is February 24th.

    My last day of IV antibiotics is Wednesday the 22nd. My left thigh is still VERY numb and the area of numbness is larger than it was before surgery. I’m hoping some of the numbness goes away. I will most likely have some lasting numbness in my left thigh regardless just from nerve damage that was done. The numbness is hard to explain because it doesn’t necessarily hurt per se, it’s just uncomfortable and feels weird.

    Thanks to my sister for helping me shower today for the first time since surgery. I feel a little more human, a hurting human but more human nonetheless. I think that covers everything so far. I’ll update again when there’s something to update about.

    Until next time…