This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Wednesday, February 23, 2011

One of THOSE Days....

Today has been a day full of stress for mommy.... well, not COMPLETELY, but once the mail came, the stress set in....

I wasn't too surprised to see a letter from the CF Pharmacy addressed to Saxon - it would be a statement showing the charges for our last order of Creon12 along with the insurance payment totalling about $1200 (reminder for those who don't deal with the meds everyday - Creon is his enzymes for food digestion, and this total is for about 750 of them - almost a month's supply).  Which reminds me, it's almost time to reorder, but we'll wait until after tomorrow...  But anyway.  I opened it and checked it out and, surprise, there's a charge for about $1500 on there.  This SUPPOSEDLY was taken care of last month, and the month before, and the month before, etc....  I have been calling every month since August about these charges that should have been billed (and covered) by insurance.  And every month, our CF Pharmacy case worker tells me they're taken care of.  And the next month these charges reappear.  With the charges comes a finance charge too.  And a reporting of a past due bill (not that having a past due medical bill is such a major issue when you're dealing with as many medical bills as we go through - over $60,000 just for prescriptions the first year, closer to $40,000 this past year since no major illnesses, and over $100,000 in hospital bills for the first 2 years for Saxon -SOOOO THANKFUL FOR INSURANCE!) 

Again, what do I do?  Call CF Pharmacy and this time, I'm not dealing with the lady assigned to our case because obviously that's getting me absolutely NO WHERE.  I asked for the supervisor, verified Saxon's account information, and was put through to Michelle (which I have to note here because if I don't I'll forget her name for the next time there is a problem!)  I explained the problem and told her about how I had been calling once a month when the bill came and was continually told they were taken care of but they never disappeard from the 'patient responsibility' portion of the bill.  Michelle was going to check the account history and notes and call me back 'shortly', which only ended up being a half an hour later!  She asked who I had been dealing with.  I cannot remember the rep's name, but because our account is a Solvay Care account, we had a special case worker.  Michelle knew exactly who that was and said she was surprised that there were no notes on the account other than documentation of when we reordered our enzymes.  There was no record of me calling in about these charges.  She was very upset because every time they speak with a customer, it is supposed to be noted on the account.  Her train of thought?  Of course my call wasn't noted because the problem wasn't solved - which in all actuality she said only took a total of 15 minutes to clear up.  One problem up, one problem down!!! Yippee!!

The other piece of mail - addressed to me - made me nervous.  It was from Freeborn County DHS so it was something about the insurance - and the envelope was pretty thick....  I was VERY upset to see it was a 10-day notice of cancellation on the kids' insurance.  I called Patti - the case worker - right away.  I KNOW that all of the documentation and the proofs were at DHS because I PERSONALLY delivered them.  She had to check her pile and get back to me to let me know.  Well, sure enough, she found it.  Her reason for the letter?  Well, SHE doesn't sent the letters, they're automatically sent.  BUT the reason it was sent is because she 'hadn't gotten to it yet' to enter it into the system that the paperwork was received.  Major scare!! 

THEN she starts asking about my new business I just registered for but hadn't actually selling for yet and wants to know how much I make.  I don't know!!  I haven't even actually started yet - I just registered!  I haven't made ANYTHING yet!  Then she starts threatening that Saxon is going to lose his insurance because we make too much.  Between the TWO businesses, I'm not making what I originally filed on the application, so I really don't understand that.  Scot hasn't gotten a pay increase since we started gettin insurance for the kids, and I'm making about half of what I had guessed at on the application.  And I provided her with all the documents to prove it!  We have no worries about Raine losing her insurance because Scot's income doesn't count towards hers because I don't get child support for Raine and she's not Scot's biological child, although he treats her and loves her like his own :-) 


So, yup, I called Vicki.  I know there are guidelines that protect disabled children, which Saxon is considered because of his condition.  I asked her about getting us an appointment with the Social Worker at Mayo.  Maybe she'll be able to help us out.  I have done everything Patti has asked and provided her with every piece of paper she has asked for and then some,  and re-sent every document she has misplaced or 'not gotten'.  I have not done anything to give her any reason to think I've been misleading or lied to her, yet she threatens me about taking away the kids' insurance because she thinks I'm not being honest.  If I WASN'T being honest, I'd probably be getting a lot further. 

You know, damn those who do what they're SUPPOSED to do.  The people who screw the system and lie and cheat make it worse for the rest of us honest people.  All the more reason people should be REQUIRED to take a drug test to get assistance just like those who have to take a drug test to get a job.  I can't believe illegal immigrants can get assistance when the legal residents can barely get it.

A little bit of a rant again, I know.  But there are some things, like this insurance issue, that really get to me.  Another, for those who facebook, is people who constantly use 'FML' in their status postings.  So many of these are over the stupidest things!!  'Oh, I love him, oh I hate him, we've been together 2 weeks and he hasn't called me in the last 2 hours, FML!"  Drama over who-likes-who, mommy-and-daddy-took-my-phone-away, I-don't-get-to-go-out-and-party-tonight, I'm-grounded-from-the-computer, I-live-with-my-parents-and-don't-have-a-job-cuz-mommy-and-daddy-pay-for-everything-for-me-and=my-life-is-so-hard, I-don't-wanna-work-but-I-wanna-buy-toys-all-the-time, I-wanna-be-treated-like-an-adult-and-make-my-own-decisions-but-don't-wanna-be-responsible-for-my-actions.... Seriously?  This is FML rationale?  Some people need to grow up and realize what's important in life.

My out look?  I-left-my-well-paying-awesome-benefit-job-and-a-lot-of-good-friends-to-stay-home-with-my-kids-and-struggle-to-make-my-own-businesses-work-because-my-kids-are-worth-it-and-no-matter-what-life-or-cf-throws-at-me-I-can-make-it-through-and-I'm-going-to-do-my-best-to-love-learn-and-enjoy-my-life-every-step-of-the-way.  I'm-gonna-fight-to-take-care-of-my-kids-every-day-and-help-my-son-beat-his-life-shortening-disease-and-help-my-daughter-and-everyone-else-understand-and-do-what-I-can-to-create-awareness-and-try-to-keep-my-positive-outlook.

I've had a helluva day today.  I'm trying VERY hard to stay positive and to find the bright in everything.  Some days, like today, are harder than others.  It's hard to keep my head up and my eyes dry.  Not a complete success today.  Major anxiety attack after talking to DHS... But I'm making it through with the support of my daughter and my son and my amazing husband.  And I'm praying we're going to have a good day tomorrow with positive results at Mayo with all of our appointments - Dietician, ENT, Dr P, Vicki.  Daddy told Sax we're going to see Dr P tomorrow and Sax's response?  Yay!!  Saxy get toys!! :-)

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