I Can’t Even…

I don’t even know what to say here.  I just know that I haven’t posted anything in three weeks and I feel like I need to write something here, even if I can’t write about the real reason I haven’t posted anything in 3 weeks.

I’m going to say that the sh*t hit the fan recently and we are all still trying to recover and mop up the insane mess that our life has become.  Diabetes isn’t the biggest monster under the bed.  And that’s all that I can really say.

I hope everyone is well and enjoying summer break (if it’s started yet).

Things Never Seem To Get Easier… Just Different

I want to preface this post with the fact that I LOVE our insurance. We are very fortunate to have excellent coverage for a reasonable cost (It’s an employer sponsored group plan so they pay most of the premiums).  They have liberal coverage policies, despite being an HMO, but they do require some hoop jumping for some of the items we need.  I have heard from others though (including medical device reps) that our insurance company is one of the easier companies to work with.

With that being said, this is a ranty, venty post about our freaking insurance company! LOL.

Angelina has been on the Dexcom since January 2014.  If you read my posts from that time period they are ALL about the issues we had getting the Dexcom in the first place– most of which were related to Edgepark not being on top of things, but some of which were related to the fact that the things they needed to be on top of were how to get authorizations for our insurance and process things.  It was a mess.  And it continued to be a mess every 3 months when we needed new authorizations up until January of this year when I finally found a rep at Edgepark who was willing to go the extra mile to follow through on things with the insurance and the doctor’s office to make sure things were moving along as they should be.  It was further complicated by the fact that because we have an HMO the authorization request is sent to the local IPA, which manages most of the healthcare claims to make sure they meet the criteria for medical necessity that is set by the larger insurance company.  But the bills are then sent directly to the larger insurance company rather than to the IPA.

However, despite this complicated authorization process and all authorizations being approved, every single claim for Dexcom supplies has been initially denied when the claim was submitted directly to the insurance company.  Every single claim comes back “This claim was denied because [company] does not cover services or supplies that are considered experimental or investigational.”  At which point, every claim, I email or call the insurance company and tell them (or send them a copy of) that the item in question was pre-authorized by the IPA and medical necessity was already established.  You would think after 18 months of this they would get it.

This does not make sense either.  This is

This does not make sense either. This is “clinical review” directly from big insurance saying kid meets medical guidelines for six months.

In January 2015 it was time for a new prescription for all things Dexcom, and also time for a new authorization for all things Dexcom.  That meant that the authorization would cover us for 1 receiver, 1 transmitter, and 1 order of sensors before it expired. This is like getting a BINGO because it means that when I call to place the order for any of these things they should be sent to us within a few day since we wouldn’t have to wait for Edgepark to ask the endo to submit for authorization, and then wait for her to do that when she is only in our clinic one day a week, and then wait for the IPA to review the request and make a decision and then send that back to Edgepark.  In the beginning, this usually took about a month each time.  When I found my favorite Edgepark Rep in January, this process took a week and then we had our shiny new receiver in hand.

Anyway… In March we were due for a new transmitter.  The orders for the receiver and sensors has already been done under the authorization and I had 30 days before the authorization expired.  Never one to look a gift horse in the mouth I ordered our transmitter on the exact date the warranty expired on the previous transmitter and 4 days later I had it at my door.  This time though, when the claim was initially denied and I emailed our insurance company with the authorization information (which, mind you, I had already submitted to them twice in the previous month for the receiver and sensors) it came back ‘not approved’ again.  I didn’t notice right away because it was the first time that one of these claims wasn’t just automatically approved when I pointed out we had the authorization and all the previous claims had been reversed and paid after all.  So, one late night towards the end of April I sent a very ranty message to the insurance company about how I was sick and tired of having to appeal every single claim for this device that we had been getting for the previous 18 months and how each and every time they reversed their decision and paid for the darn thing. Every single time they did a clinical review I was sent paperwork that said “we show that the patient meets the clinical guidelines for medical necessity for this device”.  Every time we needed a new authorization paperwork was sent in to support the ongoing use of the Dexcom and was authorized by the IPA. So why now was this claim NOT being processed and approved.

I was sent a response apologizing for the delay and told that it would be sent to the claims department for re-processing since it was denied in error.  And then, a few days ago I happened to be looking at our claims listing and see that this claim is still ‘Not Approved’.   I emailed again, and again was told it would be sent back to claims department for review.  I never have received any further communication beyond that, no email or letter stating that it was denied or why this claim is such an issue.

And then, this morning, I called Edgepark because I got a call on Friday requesting that I call to confirm our next continu-care order for Angelina’s sensors that are due for refill.  Imagine my surprise when I call and am asked if our insurance changed because it is showing that insurance will not pay for her sensors.  When I asked why, I was told that they could not place the order with our insurance because the previous claim was denied and they are showing that Angelina does not meet medical guidelines to receive the Dexcom sensors.

So confused. Says approved for all things Dexcom, two things got covered, one thing STILL not. Why?

So confused. Says approved for all things Dexcom, two things got covered, one thing STILL not. Why?

A call to the insurance company informs me that the Dexcom is only covered under two diagnosis codes, and the one that was submitted with the Dexcom claim is not one of them.  The rep I spoke with said she saw that the last claim was sent to reprocessing but was going to come back ‘not approved’ again based on this information.  So, this has been escalated to an appeal and I have requested a case worker going forward because this ish is bananas.  Meanwhile, I am stuck in limbo waiting for the appeal before we can order sensors.  Fortunately we have some extras so Angelina will not go without for now, but I am just beyond fed up with this messed up system.

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In other news… Angelina is switching from her Medtronic pump to the Omnipod.  We are doing the “No Tubes Attached” (previously ‘Cut The Cord’) program, which will allow us to purchase the PDM at a discounted price and then get pods filled through our insurance.  Now I am just waiting for the claim for that to see if they will actually cover this.  I am especially nervous about the whole Dexcom thing right now because of the timing with switching to the Omnipod mid-tubed pump warranty.  And also because Angelina was due for more medtronic supplies in mid-April but I skipped the order because I wanted to be sure we did not overlap and risk insurance saying they wouldn’t pay for pods, but now we are down to bare bones with our medtronic supplies and I have nearly gone through our entire stockpile that I had managed to amass over the past two years.

Anniversary

I have failed epically at d-blog week.  Thank you to those who read my two measly posts and left comments.  Thanks even more for giving a shout out today on “like” day.  Unfortunately not only did I not write, but I didn’t really read either, except for the blogs that I am subscribed to and come to my email inbox.  I’m sorry.  

I did get this nice message from WordPress this week:

  

Eating. 

  

I’d like to say today was a weird day. It really wasn’t. Except for maybe all the juice boxes. 

Angelina’s day in food:

   
8am. Pretzel bagel. 45g carbs. Toasted, with butter. 

  

3pm. Apple juice. 15g carbs, no bolus. 

  
3:30pm. Rice cake. 14g, no bolus. 

  6pm. Thai roasted duck noodle soup. From a Thai restaurant. Bolus for 40g carbs.   

8ish pm. 113⬇️ Homestuck apple juice.  Instagramed. 15g carbs no bolus.  
 
8:15pm. Rice cake. 14g carbs, no bolus. 

  

9pm. More Apple juice. No bolus.   

 
9:05pm. Chocolate. Some unknown carbs. Swag for 10g, no bolus.  

  

12 hour trend line. 

This post is brought to you thanks to diabetes blog week.  Check it out here: Bittersweet Diabetes

{most photos posted courtesy of Google images search. Except: Dexcom graph, Angelina drinking juice, chocolate}

(I Hope) I Can

Today kicks off the sixth annual diabetes blog week.  Great thanks to Karen Graffeo over at Bitter Sweet Diabetes for hosting this and arranging all the topics.
diabetes blog week logo

Today’s topic is “I Can”. I’m supposed to write about the positive side of diabetes.  I signed up to participate in D-Blog week and then today I wasn’t sure if I was going to be able to do it.  Not that there isn’t anything positive to write about diabetes – because that isn’t the case.  I have found a wonderful community of friends – fellow parents of kids with Type 1, adults with Type 1 who are amazing and often inspiring and make me feel like I am doing good with Angelina.

The reason I wasn’t sure if I would be writing this positive post today is because of my own issues.  I try not to talk about my own disability on this blog, because while it is a blog about our family and our triumphs and struggles, I have my own blog elsewhere (that is severely neglected) to write about my own issues.  However, I wanted to share a bit about myself and how diabetes has helped me say “I can…”

I think I have briefly noted before that I have bipolar disorder.  I was diagnosed in 2009 following a week long hospital stay and have been on disability since then.  My disability “allows” me to be a stay-at-home mom and have the time and freedom to care for Angelina.  Angelina is not the reason I am home, but it doesn’t change the fact that being on disability and currently unable to hold down a paying job has allowed me to claim the primary title of D-Mom.  Two plus years ago, a few weeks before Angelina was diagnosed with Type 1 Diabetes I was signed up to do vocational rehabilitation to re-enter the workforce after 4 years off.  Diabetes turned that plan upside down.

At that point in time I had just gotten to the point that just thinking about looking for a job didn’t send me into a panic attack.  It had been almost a year since I had had a significant “mood episode” (this is a blanket term for periods of depression or mania, which, for me, can last anywhere from a few weeks to a few months).  I had been working for a wonderful therapist for about a year who was helping me to learn how to recognize signs and symptoms of impending episodes and how to cope with the mild symptoms and work on psychologically getting myself into a place that would help prevent the symptoms from worsening.  Mood disorders are complicated things though.  You can have all the coping mechanisms in the world and still experience moderate or severe mood episodes.  Sometimes you just can’t stop it, because at the root, it is chemical.  Sometimes you can no more stop a mood episode than you can stop a cold, the stomach flu, or food poisoning.  Sometimes there are no warning signs or symptoms and you don’t progress from mild to moderate or severe. Sometimes you are fine when you go to bed and the next morning you can’t make yourself get out of bed.  Your brain just shuts down and you don’t have the will power to will power yourself out of it.

But I digress… I didn’t end up doing vocational rehab. Instead, a few weeks later, I learned how to care for a child with diabetes.  I learned how to draw up insulin and give shots. I learned how to count carbs and calculate insulin doses.  I learned how to keep someone alive whose body wanted nothing more than to kill her.  Beyond the vagueness of keeping a child alive that all parents are tasked with by feeding them, clothing them, I literally was tasked with how to keep my child alive on a daily and hourly basis. And I found a purpose.

I never really wanted to be a mom.  And then I got pregnant at 18.  I gave birth to a practically perfect baby at 19.  And at 1 month old she developed eczema.  It was quickly apparent that it wasn’t the garden variety eczema that a lot of babies get.  We kept being told “She’ll grow out of it in a couple of years”.  In a couple years she was officially diagnosed with moderate-persistent asthma.  The eczema got worse.  She got warts.  Not one or two, as kids do.  Dozens. Hundreds maybe.  Her dermatologists were at a loss.  We tried everything.  She got kicked out of daycare because it freaked out other parents.  And then about a year after the first one showed up, they all went away. All of them.

We saw an allergy and immunology specialist who did allergy testing as well as some pretty extensive immunology testing when she was 3.  We found out that allergies were likely at the core of her eczema and asthma. We also found out that she had some levels that were slightly “off” but not really enough to diagnose anything. She wasn’t immune compromised. (I later found out that some of those tests indicated an autoimmune condition, but I didn’t discover it until after she was diagnosed with Type 1 at age 9 1/2 – six years later).

All of these things made life difficult for us, for Angelina.  When she was 4 she was hospitalized twice for pneumonia and each year since then she has had pneumonia at least once.  The last time she had pneumonia was when she was also hospitalized and diagnosed with Type 1, over two years ago.

All of this information has been given as background for me to say:

Because of Type 1 Diabetes I can…

…Get out of bed. Even when I can’t for anything else.  I can and I will get out of bed to take care of Angelina.  To keep her alive.
…Take better care of myself, so I am there to take care of her.

…Look past whatever is wrong with me to make things right with her.

…Look at where we’ve been and where we’re going and know that no matter what struggles we have yet to face, we will survive it.

…Take the time to write in this blog, even when I don’t feel up to it.  Because I said that I would and even if no one is counting, I made a promise that I intend to keep.

…Be a source of information, compassion, friendship in a way that I never have before. This makes me feel fulfilled in life.

…Feel accomplished at 8am, even when I am still in my pajamas and haven’t brushed my hair or teeth.

…Feel a sense of purpose in my life, even when life seems hopeless.

Lastly, because of diabetes I can… HOPE.  Of a brighter future. Of more tomorrows. Of future happiness for myself and for Angelina.