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 :-) 


Anyway.


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!! :-)

My heart aches...

Why do bad things happen to good people??  Why do thoughts cloud my mind and try to drive me to insanity??  Why must there be so much pain??  Why can't we do more to protect our children??

My thoughts have been driving me crazy lately... just reflecting on so many things that have been happening.  It makes me think.  I think the thoughts I don't want to think.  I think the thoughts that scare me most.  I hate reality.  I hate feeling helpless.  Even more, I hate being helpless.

My heart aches because of these thoughts.  My heart bleeds for others who are suffering.

Why is the world so addicted to others' pain?

Why is the world so fascinated with death and the end of the world?

So much of our lives are really NOT our lives.  So much of our lives are outside of our control.  When you really think about it, there is so little we can control.  It's out of our hands.

I hate not being in control.  I'm a fighter.  My family is a family of fighters.  We will not give up.  We will not give in.

I am so discouraged and my heart is aching for those I know, even though I don't actually know them.  I see how they suffer.  I can feel their pain.  I can't imagine all they are going through, but I feel for them.  I cry for them.

I feel for the parents whose children have lost their battles.  I feel for the parents sitting beside their children as they battle for their lives.  I feel for the parents who are battle their own health wars, but still must put up the brave front to put their children's needs first.  Some of these parents will be reading this...  You know who you are.  You know what I'm talking about.

There are times when we need a timeout.  There are times when these demands take their toll on the parents.  It takes a toll on the kids too when Mommy and Daddy get stressed out.... We can't be the best parents we can be if we don't take care of ourselves too.....  Sometimes we lose track of the whole picture, the bigger picture.... but what is the bigger picture?

The panic attacks have been coming back again.  In full force.  It's hard to keep them down.  Maybe it's this time of year....  Maybe it's because I know of the stress that comes with this weather, and the stress that comes with the holidays, and the stress that comes with winter illnesses...  Maybe it's just all in my head and I'm finally losing my mind....

Some days I am just in awe while watching my kids.  To think, I gave them life.  I snuggle with them and hold them close.  I watch them sleep.  I watch my husband sleep.  I love them all so much, I don't know if they know how much.  When my Saxy is sleeping on my lap, I just snuggle him so close.  When Raine falls asleep against my side, I want to wrap my arms so tightly around her so tight and never let go.  They both are growing so fast.... too fast....

I don't know if my husband knows how grateful I am for him or how much I love him.  I try to tell him, but it's so hard to find the right words.  The past (almost) 7 years, he has been one of the best things in my life!!  There are many things, particularly in the past 3 years, that I don't think I would have made it through without him, without his support.  I know it's hard for him at times too, and he tries so hard not to show it.  And I know there will be many more difficult times in our future.  But with him, I can take on anything.

At least, I hope I can.

I'll admit it.  I am scared.

I read some of the case studies for the new medications.  I read about treatment plans for CFers with different gene mutations.  I read about g-tubes, picc lines, nebulizers, hospital stays, surgeries, lung transplants, colds that turn to pneumonia in the blink of an eye.  We have gone through some of these.  We know how fast things can start to go downhill.  We know how fast it can all snowball.  We know how fortunate we are to have Dr Ulrich's cell phone number for serious/emergency situations. But this doesn't decrease my fears.  Every cough, every cold, fills my heart with dread.

Too many children are losing their battle with CF.  The average lifespan is too damn low.  I'm not ready to lose my son.  I know that no one is ever ready, but I'll be damned if I'm not going to do everything in my power to fight this disease every step of the way.  If it comes down to me giving my son one of my own lungs, I wouldn't even hesitate.  It's sad that so many others won't give up their organs even in death.  Those lungs aren't going to do anyone any good buried and rotting in the ground!!

For now, I'm going to be thankful.  Or the best I can be.

I'm going to fight tooth and nail to keep my son alive and beat this disease. 

I'm going to appreciate every day that my children are in good health. 

I'm not going to take my children or my husband for granted.

I'm not going to give a damn what anyone else thinks - I'm going to do what's right for my kids and their health.  Don't be surprised if we don't stick around if someone is sick or has a cold, or reeks of cigarette smoke, or if the temperature is too hot.  I have to do what is right for my kids.  And I'm not going to bring them around others when they're sick.

Don't use guilt trips on me - I'm done with them and they're not going to work.

Don't play my children against me or try to turn them against me.  When the time comes, they will understand why we do what we do.

I'm trying my best.  That's the best I can do.

I've said it before.

I don't want your sympathy. 

I don't want your pity.

I want your understanding, support, and love.

And I don't think that's too much to ask for.

Move it Mommy!!

The summer has been just flying by, and in spending so much time with my children and getting my business going, keeping this up has kinda taken a back seat unfortunately.  So now here I am again trying to bring things up to speed.  It's been a busy month and a half!!  But we'll make it a fairly quick summary.  My camera battery is dead, so I will try to upload new pictures tomorrow. 

Saxon just turned 2 on July 8.  We had a big party at our house for him the following weekend, with lots of friends and family!  The kids played in the pool and on the swing set.  Mommy was getting a little worn out from all the prep, so I broke down and bought a birthday cake.  (That's ok, I will have PLENTY of years still to make birthday cakes for my kiddos!!)  We had a SpongeBob theme, with a pinata and yellow plates and 'beachy' decorations.  He LOVED all the SpongeBob toys and especially his bulldozer... we had trouble getting him to put it down long enough to open the rest of his presents!!!  The little man seemed to have a good time though.  We even got Great Grandma Nancy in on the pinata fun!!!

It's been a little tough playing referee lately.  Him and Raine have been fighting quite a bit and there is a little bit of jealousy going on.... We're doing everything we can to try to resolve that issue before it gets out of hand.  Hopefully that doesn't take long.  We've been trying to show her everything he goes through because she has the impression that his checkups in Rochester are fun.  We let her see exactly what he goes through at the checkups and she sees how hard it is and that it isn't fun and games.

As far as Saxon's health, we have some good news and some bad news.  The good news is we are still (knock on wood) without antibiotics!!!  This is the longest he has EVER gone without them!!!  It's such a relief that we haven't had the additional medications and unscheduled visits to the clinic and the hospital!!!  The issue with his lymph nodes has pretty much resolved itself with the use of Claritin.  I've been giving him his allergy medication later in the day so that if he IS exposed to mosquitoes, he doesn't have as major of a reaction.  He swells up pretty good when he gets bites, but that's one of his allergies!! (just in the bite area!!)  Dr P said we will be doing another allergy test before long to be more certain.  The bad news is Saxon's weight is not where it should be.... it's going down again....

We had an appointment at Mayo last Friday, the 13th.  The appointment went pretty well.  Since Sax is 2 now, his vitamin dosage has increased.  Since he is not gaining any weight and getting really picky about eating again, we have started supplementing with PediaSure.  SOOOO happy that WIC covers it and we are covered by WIC!!  He had started out at 2 cans per day, but now we are doing 3 cans per day and are having the PediaSure with Fiber.  That may alleviate any future digestive problems.

The kids have insurance again too!! FINALLY!!!  It only took FOREVER for the county to process the application and decide what they wanted.  The BEST part is that they made it RETROACTIVE to MARCH 1!!!  That is really helping with the bills - we have almost $100 credit just from the prescriptions, just at ONE of the pharmacies!! :-)  At least SOMETHING is going in our direction now!!

We just got a new nebby for Saxon!!  The one we had was the travel version that is not meant for use multiple times a day every day.  So Vicki got a prescription for us for a new one, which was covered by insurance since it was the first one we have requested from them. 

We also got Saxon's vest!!!  It just came yesterday (although I was told that it would be here Wed, and told I needed to sign for it, but both proved to be FALSE).  We had an RT come down from St Peter to show me how it worked.  Saxon didn't really like his first treatment with it - I suppose it scared him and it's something new.  But now that he's done it 4 times (twice yesterday and twice today) he's starting to get used to it and not fighting as much!!  Plus it really cuts down on our therapy time, since we can do his albuterol and Pulmozyme nebbys at the same time that he's getting thumped! So instead of 40 minutes twice a day, it's 40 minutes TOTAL for the day!!  I was told to expect a call from the insurance company in about a week so we can let them know how things are going with the vest.  It had a pretty price tag on it though - $16,500!!!  But that covers a lifetime warranty, replacement parts, and larger vests as he grows.  One step forward on our battle!

We are getting ready for Sunday now.  Strides for Sax has a float in the upcoming Kernal's Day Parade.  We're not positive on what exactly we're doing for the float, but I'm sure it will come together in the end.  Opa has donated money for the candy for the parade.  We're also going to give out some of the teddy bears that we have left from before, and we're going to pass out more fliers for out Poker Run. 

I'm starting to get a little worried about that.... really hoping we have a good turnout since we haven't gotten any early registrations.  I'm at a loss of what to do... If this fundraiser is unsuccessful, I don't know if I'll have the heart left to invest my time and energy into another!!  It's so frustrating, especially after all the work and money we put into these events!!! It's disheartening to think that people just don't care and that the support isn't there!! I would do anything for my little guy, but I'm just wondering what I CAN do anymore.... I don't know anymore.....  I guess all we can do is to hope for the best!!!