So my youngest fighter got approved for Orkambi and is supposed to start this week... insurance called and the copay is over $7,000... wtf? Like thats 2 months income for a 28 day supply... we're waiting to gear back on copay assistance but seriously why is medically necessary medicine costing so much? Is this common for CF meds?
So our youngest has cystic fibrosis and is constantly needing treatments breathing treatments twice a day meds with every meal and daily meds as well... we just found out he has also developed childhood diabetes (we knew it was coming eventually) my husband's job has mandatory Over Time going on and hes gone for 5-6 days a week from before we wake up until bed time for the kids and when he gets home hes falling asleep almost immediately (understandably so his is a very physically demanding job) insurance wont cover help coming in... my eldest isnt old enough due to local laws (understandable but sure would be nice to have help for even just one treatment a day) so called "friends" locally only willing to help in extreme emergencies (as in youngest being hospitalized) my family isnt local and my husband's is too wrapped up in his sister's kids (sister is the golden child in the family) ladies at church always say to ask for help anytime but whenever I do suddenly none are able to help... and to top it all off our only toliets pump decided to start spraying water all over the place and I stupidly opened it to try and fix it without shutting off the water so now I'm sitting on the bathroom floor covered in toliet water after bawling my eyes out... my youngest came toddler over and crawled into my lap and all I can think of is at least the water is from the tank not the bowl... anywho moms in similar positions how on earth are you surviving? Eta: my husband does absolutely help on his days off just during the long weeks of no help
So I know my husband isnt ordering flowers and will wait until the day of to pick up flowers... I have 2 sons I'm raising guess who is learning how place an order for flowers today... not going to let my future daughter in laws feel forgotten