CF Happens

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

recent posts

  • 3 Weeks Post Back Surgery Update

    I’m officially half way through my 6 weeks of initial restrictions! No BLT (bending, lifting, twisting) has been hard just for the simple fact that I really dislike being needy. I have gotten really good at squatting to get things done, depending on how low I have to go that is. I was restricted from driving for 2 weeks. My neurosurgeon’s nurse said if I felt comfortable driving sooner (after a week and a half or so) and I was off of pain meds I could drive before the 2 weeks. With that said, I drove for the first time 11 days after surgery and it was glorious! Driving has always been the first thing I look forward to doing after being in the hospital for any amount of time.

    Now…how am I feeling/doing? I am much better than I was right after surgery. I’m not really in pain anymore, generally speaking. My back is just very tight and stiff which is a given with just having surgery and being limited on my movement. I do get uncomfortable when I sit, stand or lay in one position for an extended amount of time. This means I have to do a lot of shifting and repositioning which I’m supposed to do often anyway so I don’t get more stiff. If I am up doing a lot (within my restrictions that is) my back starts to ache and really bother me. I have to be good at listening to my body and sit my butt down to let my back rest. Oh and I can’t lift more than a gallon of milk. This restriction is annoying. That means I can’t lift Otis, our 11 pound shih tzu. He’s a very needy boy. His preferred places are in a lap or in his big fluffy bed. He’s getting used to me not being able to lift him and the fact that he can’t be on my lap, with the thigh numbness being worse at the moment. We put his fluffy bed on the couch next to me so he would lay in it and not try to climb on me.

    The surgeon had to sever a nerve during surgery which means I get phantom pains in my thigh right now. These phantom pains feel like I’m being electrocuted but just in my thigh. They are either really sudden and strong (which is very annoying) or they feel like flutters of electricity. Over time, the phantom pains should go away as my thigh gets used to the fact that the nerve is no longer connected.

    My thigh is much more numb than it was before surgery and covers more surface of my thigh. For instance, if I have something in my left front pocket, I can’t feel that there is anything in my pocket. When I lean against anything with my left thigh, I can’t tell how hard I’m pressing against whatever it is because I can’t feel it. It’s a very weird feeling. I hope that I will gain some feeling back but I’m not sure that will happen. Time will tell.

    I see my surgeon on February 24th which will be 6 weeks since surgery. I’m restricted from bending, lifting and twisting until I see my surgeon. I can’t lift more than a gallon of milk until that appointment as well. They said they really want me to take it easy and rest. If I do too much I will set my healing back. Tick tock! My surgeon typically doesn’t have his patients do PT (physical therapy) after surgery. It’s a case by case basis.

    I think that sums up the last 3 weeks, give or take. I’m hanging in there as best as I can. I’m taking the good times and soaking them up. With the good times come some not so good times. I’m taking the not so good times to rest.

    Until next time…

  • 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…