Sunday, January 14, 2018

Advocating for Insulin

Today I got groceries (Walmart Grocery Pickup!), made the BEST chocolate chip cookies (my personal favorites!), took Mary Claire to make dinner at the Ronald McDonald House, and fought with my insurance over insulin. : O  Oh! ..and visited my mom, dropped off my sweet Gatsby to spend the night ..and Ches took Ethan over there to stay too..and Clay took his car by to let Dad check it out for a second opinion!


So.. this insulin thing.  I'm beyond frustrated this week..and especially today.  I hate having to fight for everything.  For benefits, for equality, and this week just for insulin. 


The current going rate for insulin pens (Novolog OR Humalog) is $670 per box (5 pens).  Tell me how this isn't gouging the system and the public.  And our family.  I picked up four boxes today that I had to really work just to get.


Back story: beginning January 1st our insurance company decided they wouldn't cover Novolog anymore.  How they can determine the best insulin for my child..I have no idea.  I fought back on the strips they won't cover since they work with the meter/pump/CGM..the verdict is still out.  But insulin..heck, I'll give it a try.  

I called our endocrinologist to get a new script Monday.  I got to speak to a NURSE (human!) when I called.  I felt giddy, excited, thankful, amazed..and I thanked her for actually answering the phone.  (Cause this never happens!)  She said she'd call in the new prescription for Humalog.  


It was premature excitement.


Tuesday..I called the pharmacy, and no new script.  No insulin.


Wednesday..I called the pharmacy, and no new script.  No insulin.  I asked them to run the Novolog (still had 8 refills on it!)  to see if there was a grace period and maybe could fill it.  Nope..wrong formulary...not approved.


They said they'd send a fax requesting a new prescription for Humalog for both kids.

Thursday..no insulin.

Friday..no insulin.


Saturday..I'm about to lose it (secretly crying in frustration and passive aggression).  I texted our endocrinologist asking him to PLEASE (for the love of God and my children) to call us in some Humalog. (Since $670 a box isn't really in my budget post fun Christmas and vacation!) (or ever).  He says he'll do it immediately.

Hours later, my pharmacy is getting ready to close..another call to them..and surprise!  No new script.  Losing my mind and patience.  I text again, Please?!  

Finally, insulin called in to a different pharmacy that stays open later on Saturday and open on Sundays.


I get there today, and they give me a hard time (they don't see me three times a week for different prescriptions..), they ask if I realize this is new insulin I haven't filled before (ha!), and there's a big new copay.  


I paid and left..calling my insurance as I got into my car.


Massive run around..I can't even type the whole story.  They have backed out of coverage, unenrolled me from a program..didn't tell me about it..I'm stressed..cry in the parking lot of the RMH as I get back to help Mary Claire finish dinner.


Diabetes isn't just taking care of blood sugars.  It's a whole world of litigation, rights, benefits, finance, management, administration, education, and a little magic drug called insulin.

Hugs to all you insulin users, I get you, fam.


The righteous cry out, and the Lord hears them; He delivers them from all their troubles.
18 
The Lord is close to the brokenhearted and saves those who are crushed in spirit.

Psalm 34: 17-18

Friday, January 12, 2018

En Route

December 26, 2017

It’s been a sweet few months.  Our babies are all growing up so fast!

We went to Universal Studios a couple days before the ride in Amelia Island, FL! 

Our family rode in the 2017 JDRF Ride to Cure in Amelia Island, Florida in October.  We trained this year (I started in February on a new Trek Emonda bike!), and we rode most every day with long trips with the kids on the weekends. : )

Team Arkansas that rode in the 2017 JDRF Ride to Cure!  (I had no idea this would end up being our only team photo..and we didn't have our practice jerseys on yet!)

My two very best cheerleaders!!

We rode to Chick-Fil-A in Rogers and Fayetteville, and Ches and I rode to the CFA in South Fayetteville.  Ches and I also rode in the Square2Square ride from the Bentonville Square to the Fayetteville Square! (31 miles)  I actually got lots of time to ride with friends, Springdale Bike Club, Mary Claire, and my pro rider husband! : )

Starting Square 2 Square with Ches!
And finishing in 100 degree heat! : )


We also had to fundraise like crazy for four of us to get to ride!  There is a $2000 minimum per person to ride, and the deposit was due in July ($750 each).  So we were nervous about the commitment to both ride and fundraise! 

Mary Claire's Jersey..she pinned on her own number..big girl.

We had a swimming Mother’s Day Out/babysitting day, we washed and cleaned cars, auctioned donated items online, and I decorated.  We also had really sweet friends give with nothing in return.  I have to say $8000 was a huge goal, but we did it!  We are so thankful, and the kids had a blast.  Mary Claire got off at the end and said she wants to do it again..and go farther!  I totally agreed. 
About 7:15am, ready to ride!

We aren’t sure what we’ll do next year.  The ride locations have been released, but it was SUPER hard for the kids to miss school.  There is one before school starts in early August in Lacrosse, Wisconsin, but they don’t want to go to that one!  I’d love to do the one in Saratoga Springs, NY, but they aren’t game.  If we do one..I think it’ll be in Santa Fe, New Mexico, November 1-4th.  We could drive, and maybe only miss a couple days of school : )
He did an amazing job, 55 miles with no problem!  He's ready to go again!

Today we are still en route to Alexandria, Virginia/Washington D.C.  We left Nashville, Tennessee this morning!  I’ve been shocked to see so many wrecks along the way. : O  And traffic just all slams to a halt.  We even had a gigantic (full) trash bag fly at us!

Animal Kingdom before the ride!

I think I’m going to try to write more in 2018.  It was a good journal for me, and it helped tremendously when I lost a lot of pictures a couple years ago.  Some photos on here are all I have left after my computer crashed!  I’m sure it helps my memory..and it’s therapeutic too : )

Us meeting Ches at the finish line!  We'd already finished, swam, ate lunch, and then we went to meet him-105 miles!!

I found out a little bit ago that some sweet friends didn’t do anything for Christmas day.  I’m going to do better next year-planning for Christmas, and checking in with everyone to see what they are doing.  They could hang out with us in our chaos! ; ) It should be more people, fewer things and tasks.  I did better not stressing as much this year!  I did less decorating, and I got help from people after I cut my fingers/stitches (oh yeah!  Blessing in disguise?  Maybe!)!  But I didn’t reach out as much..I kinda felt helpless with a left hand out of commission.
Me and a tomato can had a small altercation..


Praying you had a good Christmas and a enjoy a blessed 2018.  Hugs!

Friday, September 1, 2017

Gatsby, Bike Ride, and a Bulletin Board!

I've been listening to podcasts lately..and a recent one (NPR TED Radio Hour), was on time (8/4/17), and how it slips by so quickly!  There's a man taking a one second video every day (and he has been for three years!) to keep track of where all his days went.  I feel that way a LOT with a busy life and four active kids.  I feel like my days run together, and I can't remember what I've been tackling lately!  I will try ("try not, only do" says Yoda) to do better.  Even if it's just a picture a day. : )

Yesterday, I worked on our church youth bulletin board.  It's almost time to start back to class and youth group! : ) I had extra little Hawaiian themed things from our neighborhood bike rodeo on July 4th, so I was trying to work water/ocean into back to school.  All the places where the cut border was overlapped..I covered with bright pictures, haha!  The flyers aren't in the folder yet..but they will be! : )



Today Ches, Mary Claire, and I went for a bike ride up to Starbucks (and Ches got a drink from Chick-Fil-A!) in Rogers.  Then he and I caught a movie, I had a little nap, and we went out to dinner for BBQ and a trip to Wal-Mart.  (Obviously the beginning of my birthday weekend!)  Hope you have a blessed Labor Day weekend! : )




And..apparently I forgot to write about our puppy, Gatsby!!  I think we got him about August 4th.  He was tiny and super cute.  He is now much bigger, and after grooming..less cute, ha!  He is a GiAnT fluff ball! : )

Here are some pictures from the beginning:








Time goes so fast!  I'll do better.  Stay dry and safe, hugs!

Sunday, July 2, 2017

The One Where I Sang!

Hey there! : ) We have been working a local fireworks stand (indoor, whew!) to raise money for Mary Claire's trip to the national youth conference in November!  It's been good for both of us to spend time together, we've met some super sweet people-and youth!  It's not just for our church (although our men's club runs it), other groups can come learn and work too.  We sign in and out, and they give us a percentage of the total sales based on the hours worked by each group.  



We also had an Arkansas Naturals ballgame today in cooperation with JDRF as a fundraiser!  We didn't have that many people, but it was fun! : )  I got to meet two new families that have kids with diabetes, so that's a total win!



We made little last minute treat bags, mostly with fireworks since a.) we were working at the fireworks stand today.. and b.) we couldn't bring food into the stadium!  I snuck a few chocolates into them, but they let them pass.  Score!



Carter with Brody!

I did something kinda crazy.  I agreed to do LIVE karaoke in front of everyone at the ballpark.  At the end of the third inning, I stood on top of the dugout, and sang.  It was very brief (thank you, sweet baby Jesus!), and I LiVeD!!  I was DYING beforehand, sweating, sooo nervous, but I lived.  I got some free stuff that I gave to two families who attended the game with us, totally worth it. : )  When is the last time you did something that SCARED you?!

Oh, and then my friends and kids said nice things to me.  Like, I know I can't sing well (or AT ALL), but them being positive was really awesome!



We met another new-to-us family with a sweet young lady, both with diabetes and with some anxiety, about a year younger than Mary Claire.  We have been there!  It was good to talk with her, encourage her, and I think she's on the right track.  Her momma is doing a great job!  We do remember how hard it was in the middle, I have not forgotten.  The above happens to be my girlie on the other side, hooray!  She's winking at me, it totally makes me laugh..and she knows it.  God is good, friends.  Please pray for our friend, Brianna, as she grows confidence in herself!



Hugs!