Evenings are busy round these parts anymore. Actually, most of the time is busy around here. I have dishes sitting on my dining room table from a very kind neighbor who brought us dinner last week, and in the last 24 hrs haven't been able to find an extra minute to walk them back across the street and thank her.
I spent hours on the phone with insurance this week. I needed to blog to vent my frustration, yet haven't even had the chance to do that. Basic survival is about as much as gets accomplished, especially when you go through a debacle like I did this week.
There is a special online pharmacy called the CF Services Pharmacy, catering specifically to people with CF. We have to jump through hoops with insurance because they want you to use their mail order pharmacy, but when you take as many medications as Drew does, the manufacturer programs and convenience of using a pharmacy specifically suited to meet your needs is important, its kind of worth fighting to get your way. Well, I guess it has been a year since I last had to go through this, but I called the pharmacy to order our monthly refills and was told our insurance was denying us because "maintenance" medications need to be filled through their 90-day mail order pharmacy. I explained that because our Medicaid coverage for Drew only covered a 30 day supply that we were requesting an exception like we had the prior year. It seemed like it would be easy enough since we had gotten the override last year, but 7 days and hours spent on hold and talking to a number of "resolution specialists" and still not having the medicines we need, I was wrong. Luckily we were able to get things mostly sorted out, but not without hours of frustration. Just another glamorous benefit of life with Cystic Fibrosis.
The Philly Great Strides walk is next weekend. We don't have that many people signed up to walk which admittedly is a little disappointing. I think people get intimidated by the idea of fundraising, but we aren't even asking people to do that this year. Just come and walk. For $5 you can get a Doin it For Drew t-shirt. When people ask us how they can help, this is a good way. It shows us that you care and that you support us. And hey, if you wanna fundraise, I'm not going to stop you.
Another fundraiser we have coming up are the Goat Races. My parents recently moved down to my grandfathers farm and then done gone and went country on me! Actually it sounds like a fun event - a local brewery had a big festival during which there is a goat race. Yes, like actual goats racing, just like it sounds. Anyone can enter a goat in said races, and the goat who wins gets a beer named after him for a year. What a brilliant way to raise awareness for CF! I mean if you were at a brewery, wouldn't you read about the beers you had to choose from or at least chat with the bartender about why a particular beer was called what it was called? I would!
Speaking of fundraising, I decided today that i'm going to offer photo sessions from today through the end of the summer for $100, with 100% of the proceeds going to our team. I will be in Pennsylvania for most of July, so any friends and family who are interested in Cincinnati or Philadelphia please let me know so I can stick it on the calendar. You know, the calendar I described above as having negative free time. Hey, it's fundraising, it's worth it. My website is www.erinmoore-photography.com.
Jake seems to scream his head off from like 7:30 - 11pm every night unless I'm holding him. Its not that bad, given that he's generally mild mannered throughout the rest of the day. It's as though from 7-11 he's saying, "Alright lady, it's my turn for a little attention. I'm quiet all day, just letting you know when I need a meal or a diaper change. Is a few hours of snuggle time and undivided attention too much to ask?". And he quiets right down when I hold him and we rock. It just limits what I'm able to accomplish, and with those being the hours that the big kids, you know the 2 and 3 year olds, are sleeping, it's the only time in a day that I have to do anything that I might want or need I get done. I miss the hours i use to spend surfing aimlessly on the internet after the kids went to sleep. I miss my opportunity to respond to emails and text friends. I get my blog reading done in the wee hours of the night while nursing, and sometimes can even squeeze in my celebrity gossip apps. And the whole Amazon "One-Click" ordering feature may very well lead to my demise. But Little Jake has other plans for me. Oh well. I can type a blog post from my iPhone with 1 hand, so something's being accomplished!
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