Thursday, October 15, 2015

Quiet in the House

Life at Our House:

 I want to take some time to update everyone on what is going on at our place. Our life has been a little crazy since getting married and only now, do I feel it is starting to slow down. Whew. We got married on August 16th, Andrew's new store (where he works) had its grand opening on the Tuesday after our wedding. We moved into our new place on Wednesday that week. Since then Andrew worked 12-14 hour days 6 days a week until we left for our honeymoon on September 27th! I spent most of my days unpacking, cleaning our new home, Calling docs & updating all the accounts with pharmacies, etc. (See our Wedding pics on my Facebook page!)

We got back from our Honeymoon on October 2nd. Read about our Honeymoon Trip right here. Luckily, since then Andrew has been able to work less hours (averaging 50-55 a week) and he gets two days off a week now. I've had some job interviews and meetings,which went awesome. I then met with the Real Estate company, where I plan to work. I have to travel up to chicago area for my licensing. I have my CF Clinic next Thursday up there too! So that is a lot of driving in the next couple weeks. Speaking of doctors and medicines, let me catch you up healthwise.

My GI problems are livable right now. Not ideal, but not that bad. Plus, lung wise I have been okay too.

Picture: Lung function from 2010 to Present. Ranging 40-60%


I'm really hoping to see an increase in lung function at clinic...



I've been stable around lower 50s for a while now. And while I'm happy to not decrease, I really want to get back up to the 60% again. Since moving I haven't really been working out at all. That needs to change, but luckily I do more errands and active daily stuff.

Plus, my therapies have been more productive lately (maybe because I'm ACTUALLY paying attention to my breathing during them...lol). It sounds so weird to think about it, I have been doing nebulizers since I was an infant. I practically do them on autopilot. I realized the other day I'm not breathing in as deep as I can be. So I'm trying to re-examine the way I do my breathing & vest.

I wrote a pretty accurate and very honest blog post about insurance frustrations (right here). Luckily, we have paid our deductible off for the rest of 2015. We do have to start over and pay it all again every year in January.  We'd have to pay all of it out of pocket ($3,000 for my half, $3,000 for his), since Pulmozyme, Cayston, and Tobi all cost more than the deductible for the year. We found out that there is a co-pay assistance card for Pulmozyme. Therefore, if we order that first, we only have to pay a smaller portion & the assistance pays a larger portion (and it still goes towards our deductible). At least that is what the Specialty Pharmacist told us, so we are hoping she is correct. I will let every know how that goes next year! So I figured that out and I start Cayston next month, so I'm hoping I have no problem filling that prescription (even though our pharmacy doesn't carry it and we have to order through somewhere else). It's pretty funny how often I order meds. I have to refill at least one script every week.

That's why life is never dull at our place. Besides the regular weekly errands: Groceries, Laundry, taking recycling to the center, trips to library and video store, working, studying, etc... we also run to the pharmacy & call doctors office almost every single week. At least once a month Andrew uses one of his days off to travel with me to the doctor's office. I have two appointments coming up soonish. CF Clinic and my eye appointment. Yep, eye appointment, because I have been having some old eye problems act up again. I keep tripping, etc. It's also why I'm not blogging quite as much. I honestly can get a headache while typing a blog. But today, I just had to post one! So hopefully it will be fixed soon and I can get back to everything...




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