Cheriz: My life with Cystic Fibrosis

Happy Halloween! Halloween always reminds me the fall season is ending soon and that winter is on it's way. Bringing with it the dreaded seasonal sickness... All seasons have pros and cons.  Fall season has leaves changing, trips to the Orchard, and our favorite pumpkin carving... Andrew & I started dating Halloween weekend in 2012 and every year we carve pumpkins together! This year we did Judy Jetson & Bowser! What do you think? While I love that  the winter season hosts many amazing family-filled holidays, it is also the hardest time of year for me.  Cold weather kills my lungs. I have my VogMask and tons of scarves my mother has crocheted (perk to having a crochet-crazy mama). But walking outside is still difficult. Yes, I have a treadmill. I have used it (once in a while). It's just not as fun as walking somewhere outside. So I have to push myself to stay on top of my exercise. Exercise is crucial to my health and lung function. I saw the difference w...

It's a bit of a rainy Wednesday, so I don't know what is better than catching up on blogging & social media, while drinking hot apple cider.  I have a lot to get done around the house today. Yesterday, I fell asleep around 10am (without trying to) and didn't wake up til 4pm. Whew. Glad I didn't have any appointments. I really needed the sleep though, since starting Orkambi my nights are a little tougher. Overall, I haven't reacted too bad to Orkambi. Coughing more (which keeps me awake at night), my chest feels tight and I get out of breath quickly. But no fevers or anything. My energy and appetite have been good too. I started Orkambi 10 days ago and I knew there would be an adjustment period. I was excited to go for a walk last night. I walked a mile with Andrew, very leisurely. It took me a while and I needed to stop 3 times to just catch my breath, BUT I have heard of people getting so sick they are stuck in bed while they adjust. So, I will take my brea...

In my last post I talked about how exciting it was to be finally check marking some boxes off my to-do list! My eyes are still healing really well. I only get an occasional headache if I try to read or stare at a screen to long. I know it will take time, but I struggle with patience.  Shocker. I know. Well, one thing I have to be REALLY patient about was getting Orkambi! As you know this was something Dr. B was contemplating putting me on back in March. Then I switched CF Centers (Read about why in THIS POST ) and my new Doctor thought I should definitely try it. Orkambi is a gene-targeting med that tries to correct the defective mutation (DF508) and just came to market in July of 2015, but it has bit a price tag attached. Orkambi costs a quarter million dollars per year. Which means if I take the drug say til I'm 71 (its an easier number for math reasons) insurance will have spent 10 million dollars alone on this one medication for me. So you can see why it is a bit of a struggl...