Cheriz: My life with Cystic Fibrosis

Yes, Money, the topic people don't like to talk about. However, I think CF and money obviously affect each other. For instance, we have an out-of-pocket maximum of $4,000 per person (8,000/family).  Luckily Andrew is very healthy, so we don't ever (usually) pay on him (except dental). However, I always will hit my full $4000. It's just a matter of how I will spend it. It doesn't matter whether it is over 6 months over the course of my prescriptions (co-pays) and doctors appointments, or if I pay it all at once with a hospital stay. I have to be prepared, we never know when I will end up on IVs. Plus I go to CF clinic every other month and it costs $200 per visit. I ended up paying my final $1,400 of my out-of-pocket this last week for my hospital stay in October. So I should be 100% covered (since met my out of pocket) until Jan 1, 2018, and then it starts over... How? How can we afford that? We certainly can't take it out a lump sum of paycheck (he gets paid every ...

I have a lot of feelings going on, for many, many, many reasons. It all centers around my health and family. On August 4th we received 3 Foster kiddos, let's call them "Cajun, Barbie, and Shoes" (that is what I refer to them by on FB). It was a very big Roller Coaster ride for the last 3 months. If that isn't enough worry and emotions to have going on, we can throw my hospital stay and lower lung function into the mix. I knew my lower lung function was not a result of the kids (even though many believe it was)... Yes, I was run down from pulling all the "all nighters" with the kiddos- they are adjusting to a new home and its hard on them. BUT, I have been struggling with lung function for the last year now. I was 60% August 2016. I started Orkambi in Sept and 5 weeks later I was in the 20s.. I was admitted (my family did thanksgiving with me at the hospital last year). When I went home I was between 38-45 for months that followed. Not even getting to 50 was ...

Traveling and keeping costs down is difficult on its own. Adding in all the complications of Cystic Fibrosis makes it THAT much harder to travel. My last travel post was written in February. Check out that  Florida Trip Travel  post! Our 3 day St. Louis trip was by car, so it was a little easier to pack. We try to take as little as we can & pack it the most efficiently we are able. However, with this list (for only 3 day/2 night trip), it's hard: Normal Packed Items:   ( Picture from last trip, we only needed one clothing suitcase this time) 3 days worth of clothes purses/wallet Change of shoes/swimsuit tolietries Entertainment item: Ipod, Book, Magazine Now Add in: about 12 med/pill prescriptions 4 breathing treatment medications per day (2 of which we keep cold) Portable Nebulizer machine (That was a GREAT wedding present. It's compact & runs in the car Vest Therapy Machine (this is a beast to pack- see picture) 4 therapy med cups Ster...