Challenge

I know it’s been a very long time since I have posted anything on this blog. I don’t even know if anyone ever still reads it.  In case there are people out there who are still subscribed to my updates (even if just by accident because you never canceled your email subscription) I will be offering you a challenge towards the end of this post.

Angelina is gone. She is not dead, at least not physically, but she is gone. In her place I now have a son, J. To spell it out in actual words for those who don’t already know this Angelina came out as transgender in 2015. It was in the midst of what was a very major depressive episode that ended in a 9 day stay in our local psychiatric hospital at the tender age of 11 3/4.  Since that time we have been on a journey while J figures out his identity, deals with his depression, anxiety, and as yet undetermined other mental health issues, all the while with type 1 diabetes along for the ride.  And all the “fun” that comes with hormonal changes (puberty, now birth control), adjusting insulin to accommodate the psych meds that cause insulin resistance, the psych symptoms (mainly anxiety/stress) that create unpredictable blood glucose, and also some normal 14 year old behavior and the start of high school.

In all of this J decided that he no longer wanted to wear the Dexcom.  Sad as it made my little heart who absolutely wants to know his blood sugar every hour of every day, I have not forced the issue.  I understand his reasons for not wanting to know his blood sugar every hour of every day or to have the alerts remind him all day long that he has diabetes. And, because the alerts are audible, that means everyone else around him is also reminded he has diabetes, or at least that he’s beeping, which is not “normal”. And so, he’s still pumping but no Dex.

Here is where the challenge comes in.  If you are the parent or caregiver for a child with a Dexcom who is wishing they didn’t have to wear it, or requests breaks from it, or just flat out refuses to wear it all together, I challenge you to wear it instead. I know sensors are precious commodities and no one wants to waste even a single one, but I think the experience is worth it. In the past, I have slapped on the random spare sensor for a few days.  I think the longest I ever made it was 5 days before I either caught it on something and it came out, or I was just so irritated with it that I deemed a few days as “long enough”.  However, ten days ago I realized that J had started a new G5 transmitter about six weeks ago that he ended up only wearing for four days before his sensor came off due to sweating (it was July, we don’t have a/c, it was on his tummy, you get the picture) and I never made him put it back on. So, we had this $300 transmitter just ticking down the clock and nobody was using it.

So I decided to use it for myself. J most often wore sensors on his arms so I decided to put it on my arm.  I couldn’t do it by myself so I had to ask my husband for help.  This in itself was a challenge because my husband changes sensors maybe twice a year? And in the past two years I think he has done it once since J hasn’t been wearing the sensors most of the time. We got the sensor on, the transmitter attached and then my phone was telling me I couldn’t connect the transmitter because it was paired with another device. So then I had to unpair it from J’s phone and re-pair it to mine.  This fixed the problem and my 2 hour warm up started. In the past, I have avoided putting extra tape on the sensor because I have very sensitive skin, but the Dexcom never sticks long enough without it. I always told myself that was okay for me. But I wouldn’t ever let J not put tape on, so why am I giving myself more grace? So I pulled out the 4″ Tegaderm HP film tape – the stickiest tape we use – and put it on over my sensor.

Two hour warm up wasn’t done until 11:30 pm because of the delay with the transmitter (which took 20 mins of troubleshooting, another almost 30 minutes to pair with my phone, and then 2 hours of warming up) so I got to bed late on the second day of school. Fortunately, my blood sugar stayed “in range” all night so I didn’t get woken up, but the next day I realized that wasn’t really realistic and didn’t mirror my son’s experiences with the Dexcom. I don’t have diabetes. I am high risk for type 2 and was recently officially diagnosed with metabolic syndrome, but most of the time my blood sugar is 105 or lower. Or so I thought.  If I was going by my yearly blood work and fasting blood sugars and a1c level, I would think this was accurate information.  I realized that having the data from Dexcom wasn’t enough of an experience for me, someone with near normal bg levels. I wasn’t going to be annoyed with alerts going off every time I ate or drank something. I wasn’t going to be woken up at night because I’m going low or high. And if I felt relieved by that, then why could I not find the same compassion for my child who DOES have those issues when wearing the Dexcom.  So, I set my alerts so maybe they would go off after I ate a carby meal or decided to drink a regular Coke.

I realized that having the data from Dexcom wasn’t enough of an experience for me, someone with near normal bg levels. I wasn’t going to be annoyed with alerts going off every time I ate or drank something. I wasn’t going to be woken up at night because I’m going low or high. And if I felt relieved by that, then why could I not find the same compassion for my child who DOES have those issues when wearing the Dexcom.  So, I set my alerts so maybe they would go off after I ate a carby meal or decided to drink a regular Coke. I challenge you to do the same.  Take the first 24 hours, which we all know can be wonky anyway, see how your blood sugar reacts to different situations and figure out how to set your alerts so that you are alarming at least some of the time.  Maybe when it’s not convenient. Keeping in mind that you don’t actually have to treat a high or low blood sugar, you just have to be interrupted by an alarm that you can then shut off and probably won’t repeat because your pancreas works (at least mostly) like it should.

I learned some things about my own blood sugar and what foods are probably best for me to avoid.  I learned that at certain times of the day, even if I don’t eat anything, my blood sugar may randomly shoot up for no apparent reason. I learned that if I have a small snack that doesn’t happen.  But that’s me and my pancreas. I have insulin resistance. I have metabolic syndrome. But I also learned a lot more compassion for my kid and his desire not to wear the Dexcom.  I actually made it the full 7 days this time.  My week was up three days ago and just today I finally got all the tape residue off. I bumped into doors more than a few times and caught the sensor on my bra strap and my shirt sleeves. I was annoyed. I thought of taking it off early. But we don’t give our kids these options most of the time, so we either need to put up or shut up. I don’t know what it’s like to have type 1 diabetes and if Trialnet was correct I never will. But I do know what it feels like to wear the Dexcom. And I know that as much valuable information it provides and the safety net it provides, I also need to respect my child’s wishes not to be forced to wear it all the time. I need to be compassionate and understanding when he is frustrated with it or his skin is irritated by it or a multitude of other things.  This is an experience I can have and it is an experience I have learned from. I hope others take the time and effort to do so as well.

Boogey Man

This post is only slightly about diabetes and a lot about mental health and struggle. I will probably take this down later because this is so incredibly personal and I’m probably doing everything wrong posting it at all, but I just need to put it out there in the universe, even if for just a day or two. If you’re reading this (I did not share on any social media to promote this) please, please… just hug your kids a little extra today. I’m so grateful for so many things in my life as despite all of the struggle we’re going through we’re still incredibly fortunate in so many other ways. 

School Issues and 504 Plans

This morning I spent an hour and a half talking to Scott for the Juicebox Podcast which is featured on his blog, Arden’s Day.  Scott and I talked about issues with diabetes accommodations at school, and how to negotiate for some of the things that may seem like common sense to D-parents, but that schools aren’t always so quick to embrace.  I had specific questions about how he managed to convince his daughter’s school to allow him to manage her diabetes from afar via text while she is at school.  Many schools have strict “no cell phone” policies, and our school in particular has been prickly about allowing cell phone use, even for medical care, unless Angelina is in the office being directly supervised by the nurse or health tech.  Of course, my feelings (and I’m sure the feelings of many others) is that this requirement seems to defeat the potential benefit of texting.  My desire to be able to communicate with Angelina through text is to help avoid some of the extremes that would require an adult’s help, such as very high or low blood sugar, and also allow her to remain in the classroom so she is not missing important instruction or classwork because of her diabetes care.  From my perspective, she and I being able to text during the day about her diabetes care is a win-win situation.  She gets more butt-in-seat time in class AND I am able to help her address issues with blood sugar levels as they happen, instead of waiting until the next office check-in time – at which point it could be anywhere from 1 to 3 hours that a rogue blood sugar goes unchecked.

The podcast will be shared in the next couple of weeks on Arden’s Day and I will be sharing a link to it if any of my readers are interested in hearing it at that time.  I also will likely be writing a bit more about school preparations and 504 Plans in the next few weeks as we inch closer to back to school time.  Be sure to check out the “504 Plan” and “Education” tags in the upper left sidebar to see my previous posts on these subjects and the evolution of our relationship with Angelina’s school regarding her diabetes.

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 “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?

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.

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.

Fed Up

Angelina has been on the Dexcom CGM since January 2014.  For anyone that’s counting that’s 15 months.  Two receivers, 3 transmitters, and 18 boxes of sensors.  For every single one of these orders our medical supply company does not ship them to us until they have received authorization from the IPA (Defined as “An independent group of physicians and other health-care providers that are under contract to provide services to members of different HMOs, as well as other insurance plans, usually at a fixed fee per patient.”) that reviews these kinds of claims that are then billed to our insurance company.  The IPA reviews the medical necessity of the device or service requested to determine if it meets the HMOs pre-determined guidelines.  Angelina’s Dexcom has been categorized and authorized as medically necessary since the first shipment (because otherwise we never would have had it shipped to us).

There is only one medical supply company that we are allowed to go through for it to be paid for by our insurance, which we have done since the first order – despite my better judgment and overwhelming frustration with the medical supply company.  Despite this, every single order for Dexcom supplies is initially a denied claim when submitted to the insurance company.  Every insurance company claim says “You do not have to pay this unless you signed a written agreement with your provider to pay it. Your plan does not cover charges for, or related to, services or supplies that we find to be experimental or investigational.”

And every claim I send a message saying “This was authorized on XX/XX/XXXX by XXXXX IPA” and attach a copy of the authorization form with dates and relevant claim information.  And every time within about a week the claim is then paid by the insurance company.  In the beginning I used to actually make a phone call to the insurance company and go “This claim was denied. I don’t know why this was denied. What can be done?”  And almost every single time the member services representative would say “I see where this was paid on XX/XX/XXXX (previous insurance claim that I had already disputed/appealed)  and I see the medical necessity documentation in our system. I’m not sure why this wasn’t approved. I will send it back to claims with a note.  This shouldn’t happen again.”   It was after about the third phone call like this that I realized that whoever is working in the claims department just must not be looking at Angelina’s file at ALL and is just denying the claims right off just to make sure we’re paying attention and hoping we will not appeal/dispute the claim denial and they won’t have to pay it.

For the past several months I have sent a fairly standard, concise, polite dispute email to the insurance company that simply says “Please see attached authorization from from XXXXXX IPA authorized on XX/XX/XXXX for 90 days, ending XX/XX/XXXX for item #AXXXX.   Today, however, I got an email from our insurance company that says “View your recent claim” and has an fairly innocuous “You have a new claim! Click here to review your claim on our secure web portal” as well as other standard stuff about the insurance company, privacy policy, security, etc.

So, I click. And it takes me to the Explanation of Benefits that tells me our recent transmitter order/claim has been denied because “You do not have to pay this unless you signed a written agreement with your provider  to pay it. Your plan does not cover charges for, or related to, services or supplies that we find to be experimental or investigational.”

Mind you that we had an authorization dated JANUARY 27, 2015 that authorized transmitter, receiver, and sensors for a three month period, expiring APRIL 27, 2015 (that’s tomorrow, in case you didn’t know). We got a new receiver the beginning of February. I sent them this authorization form.  The beginning of March we got an order of sensors. Denied. I sent them the SAME scanned copy of the SAME authorization form.  Today’s denied claim email was for a transmitter that was ordered the end of March, two months into that three month authorization.  I sort of snapped a little.

This was the not so concise, polite, or to the point message I sent them today in response to the claim.  And of course attached to this email was also the SAME authorization form I had already sent them two times before:

“This is the THIRD claim that has been denied, even though I have provided the same attached authorization for these items from XXXXX IPA. Medical necessity has been WELL established, as I’ve explained and provided documentation for every claim for the past 15 months that my child has been on the Dexcom Continuous Glucose Monitor System and still each and every claim continues to be denied until I send this member services communication and supply (AGAIN) the authorization letters, at which point they are reviewed and approved. I am beyond frustrated with having to appeal every single claim when all of the information has been provided repeatedly already and it seems that someone in the claims department is just checking to make sure we are paying attention to whether or not claims get paid.
When my daughter started on this life-saving medical device we were informed that we had to go through XXXXX Medical Supply as our ONLY option for this device. We have continued to order through this incredibly inefficient and disorganized medical supply company who can never seem to get a single order fulfilled correctly or in a timely manner because they are the only company contracted with [insurance company] and otherwise our claims would not be paid at all. So it is further infuriating that despite using this contracted company that the claims continue to be denied every single time.

Every time I’ve called regarding this same matter I have been apologized to and told that there is in fact medical necessity information in the system and the representative has no idea why the claim was not approved and assured that it shouldn’t be happening. So beyond requesting that this specific claim be reviewed and approved, as per the attached authorization, I would also like to request that future claims for this same medical device actually be reviewed along with my daughter’s likely extensive medical necessity documentation and be approved the first time, as they should be.

Yours,

Jessica Lastname – an incredibly sleep deprived, stressed out mother of a child living with a life-threatening chronic illness”

Now I just hold my breath and wait and hope that our insurance doesn’t mysteriously get cancelled. I do momentarily feel much less stressed out though. That is something I have wanted to say for the past year, at least.

This absolute lack of communication between the insurance company and the HMO group that is making the decision to cover the thing or not is absolutely ridiculous. And of course we are stuck in the middle trying to fix everything.  I shouldn’t have to fix this.  If the insurance company requires me to get authorization from the HMO group/IPA then they should pay the bills that come in that were already authorized by the IPA.  If they aren’t going to pay the bills based on lack of medical necessity documentation submitted directly to the insurance company then they should change the way this whole authorization system works!  Or at the very least, have the IPA forward the authorizations to the insurance company when they are approved.

UPDATE 4/27/15:

I received this communication today in response:

“Dear Ms. XXXXXX:

Thank you for using the secure member website to contact [insurance provider]. To help
protect your confidential information, please continue to use the secure
member website to contact us. This online form provides greater
security than standard Internet e-mail.

Your claim question
This is in response to Angelina’s claim for date of service 03-26-15 in
the amount of $1,635.59 from XXXXX Medical Supplies.

The claim was sent for reprocessing because it was denied in error.
Generally, claims are completed within 10 business days. A revised
Explanation of Benefits will be available shortly.

I apologize for the inconvenience.

Your rights
You have the right to file a complaint.

How to file a complaint
We need the following information:
1. Patient name.
2. Patient [insurance provider] ID number.
3. Date of service or date of incident
4. What you are reporting in your complaint, specifically. If your
complaint is related to a provider please provide the provider’s first
and last name, tax ID number, and address if available.
5. Whether or not you wish to remain anonymous in the investigation of
your complaint.

How to submit a complaint
You can file a complaint one of four ways:
1. You can call the Member Services number on your ID card.
2. You can write a letter to the address on the bottom of your
explanation of benefits.
3. You can fax a letter to 866-XXX-XXXX. Please make sure your [insurance provider] ID
number is on each page submitted.
4. You can use the ‘Contact Us’ link and e-mail us with the details of
your complaint.

If you have additional questions, send us a ‘Contact Us’ message or call
the toll-free number on your member ID card, if applicable.

Sincerely,”

I appreciate the response.  Now we just have to wait and see whether or not it makes any difference for our next order.  However, this is the first time that I have ever received complaint filing information in one of these communications.  I’m pretty sure the message I sent yesterday was a complaint.

Nightscout Dexcom Share and Chicken Soup… All In A Day’s Work

In case you haven’t heard, Dexcom recently came out with the Dexcom Share System.  The Dexcom Share system essentially allows a person using a Dexcom CGM to connect their receiver to their iPhone via bluetooth and a special Share app and send their Dexcom readings into the cloud, where they can be accessed by up to five “followers” the Dexcom user has invited to view their data, also via a special Follow app.  It’s a pretty basic system compared to Nightscout, but it is also very easy and simple to set up and go.  The downsides for many people at this point is that it requires at least 2 idevices – 1 for the sharer, and 1 for each follower (each follower would need their own idevice).  There is not currently a supported watch that can display the numbers although it is rumored that the apple watch will have an app available when it is released in April.  Assuming you want to or can afford to purchase an apple watch.  At $350+ price tag this mom will not be getting an apple watch, and neither will her 11 yr old.  The apps also are not currently Android compatible, and many people with Android phones are stuck waiting for this compatibility or trying to find other options (Some have started nightscout, while others decided to purchase idevices to use, others still have chosen to just wait for Dexcom to come out with android apps).

So, once again, the nightscout team has come to the rescue.  Within a few hours of receiving their Dexcom with Share receiver fellow Nightscouters Scott Hanselman and Ben West were able to cobble together a system that allows current idevice users with Dexcom Share to upload their Share receiver data into their nightscout database and websites, which allows for continued use of the existing pebble smartwatches that many nightscouters have been using since early on in this project.  This system is independent of the nightscout “rig” and for many people who simply want an inexpensive system (assuming they were already idevice users) with watch compatibility NOW, this is an awesome solution.  It does have some quirks, but for what it is, it’s pretty amazing.  I set our “bridge” up today and when Angelina goes back to school she will have to carry half the stuff that she’s been carrying since we started Nightscout last July.  We have been an iphone family since 2010 so upgrade to the Dexcom Share was a no-brainer (especially considering we just got a ne receiver in February so we qualified for the upgrade free of charge) and added no additional cost to our management options.  By using the new Share2nightscout bridge Angelina no longer has to carry around the nightscout rig. She can go back to snapping her Dexcom receiver onto her pump belt and having her iphone in her bag like she did before we started remote monitoring.  This also means no more carrying the diabetes bag during PE, unless she chooses to, while still utilizing the Dexcom during that time, as well as the remote monitoring.

I posted on Instagram a few weeks ago a picture that told a pretty powerful story: the best system is all of the systems.  They each have their benefits, but also their weaknesses.  I have NEVER, not once, received any kind of audible alarm from Nightscout on my iphone.  I’ve tried using several different browsers and I have even opened the most reliable browser, hit the alert sound test button to make sure it works then sat and watched the red box show up on the NIghtscout screen showing an alert state, but still NO audible alerts, even after 10-15 mins of the phone clearly showing an alert state.  This has definitely been one of the downsides to Nightscout for me.  Since getting my Pebble watch at Christmas I get vibration alerts on my wrist, which are VERY reliable.  But, they are almost TOO reliable.  Any time you switch to any of the other apps or watchfaces on the Pebble it resets the “snooze” feature, this seems to include clearing notifications, etc. so that means that my watch vibrates a LOT.  Anyone who’s ever used a Dexcom and set their alert settings very tightly probably knows about alarm fatigue.  Essentially,  you become desensitized to the alarms because it seems like they are always alarming.  So, you’re more likely to ignore them assuming that it’s the same thing it was 10 minutes ago.  The bright side of this is it’s a watch, so it takes little to no effort to glance at it to see if it really is something I need to pay attention to, or if it’s simply vibrating because I just cleared the notification that someone liked my facebook status.

Dexcom Follow app clearly has the advantage here, at least in my experience and opinion.  The alarms have fully customizable settings. You can choose settings like “Alert me to readings over 180 mg/dL after 60 minutes and snooze for 120 minutes”  So, I’m not getting a high notification every time Angelina eats something, but I will get one if she went above her target range and stayed there more than an hour, meaning that it might be time to send a gentle reminder to check and do correction.  Or at least a prompt for me to take a look at the graph (from home, or the grocery store- all while she’s at school) and see if I can figure out why things aren’t where they should be.  The delayed alarms are pretty awesome in my eyes, especially since I am dealing with a tween who is slowly learning to take on more responsibility for her care.  It allows me to still know when things are going on, but without the temptation to text or call as soon as something happens – often even before she gets a chance to think about doing something about it.  It’s a safety net that allows her to take care of herself, but I’m there to catch her if she doesn’t.  I’m not rushing to give instructions right away, but also not sitting back and letting things go totally off the rails, or at least not for very long.

With that said, down side to share2nightscout bridge is you lose some of the advanced features of nightscout.  Raw data is a big thing that was recently added that I find incredibly helpful.  Raw data is basically the data sent from the transmitter before the algorithm is applied in the receiver.  The benefit of this is that when the receiver shows ???, hourglass, or is in the warm up period and not showing numbers you can still see the raw data and have a ballpark of idea of what glucose levels are.  Rather than give this up completely, I opted to set up a separate azure site and Mongo database for the bridge data.  This way other times I can still hook up the full nightscout system to still get readings, without ending up with duplicate data on our nightscout site, etc.

I also installed a new pebble watchface today that shows two receiver’s data on the same watchface.  The watchface was created for those who are monitoring more than one person with diabetes, but I set it up to show me data from both the nightscout rig (when we use it) and the Share receiver through the bridge.

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On to the Chicken Soup portion of my post.  As I posted over the weekend, Angelina and I attended JDRF Type One Nation Summit event on Saturday.  There were several hundred people at the event so it was inevitable that one of us would pick up some kind of bug and bring it home.  Of course it had to be Angelina who got sick.  She started complaining of a sore throat yesterday afternoon and by bedtime had a low grade fever.  Overnight her blood sugar levels shot up pretty drastically and she got correction around 3am and again at 6am, along with an increased temp basal rate.  She also stayed home from school today, which kind of stinks because she will also be missing tomorrow and tomorrow was supposed to be field trip day (and I was going as a chaperon as well).  I emailed her teacher this morning to let her know we most likely would not make it tomorrow just in case she needed to make other arrangements for chaperons.

It was a pretty low key day.  Angelina ended up sleeping in until almost noon and when she did get up she moved from the bed to the sofa and has sort of just moped on the sofa all day.  She definitely has some kind of upper respiratory thing going on and was complaining of her ears feeling clogged and her hearing being impaired like her ears need to pop.  She still had a little bit of a fever and just generally was feeling tired and weak. So I decided to make some homemade chicken noodle soup.

I don’t normally post recipes on my blog, but it’s my blog and I do what I want, so I’m going to tell you how to make some chicken noodle soup.

Mmmmm nooooodles

Ingredients: 3 ribs of celery, cut into 1/8 inch slices
About 12 baby carrots, cut into slices or quarters
3 packets Knorr Chicken Stock
10 1/2 cups water
3 boneless, skinless chicken breasts, cubed (About 1 to 1 1/2 lbs)
2 tsp Italian seasoning
1 tsp black pepper
1/2 tsp onion powder
1/4 tsp celery salt
12 oz package extra wide egg noodles

In a stock pot or dutch oven combine veggies, chicken, stock and water.  Bring to a boil for about 10 minutes, or until chicken is cooked through and veggies are softened.  Add Italian seasoning, black pepper, onion powder and celery salt – listed amounts are estimates, adjust to taste.  Reduce heat to low and allow to simmer until vegetables are tender, about 20 minutes.  Meanwhile, in a separate pot bring water for noodles to a boil and cook egg noodles according to package directions.  When noodles have finished cooking rinse in hot water and add to soup.  Allow to simmer for a few additional minutes for noodles to soak up broth. Serve!   My pot of soup contained about 8 large-ish servings that were approximately 35-40g carbs per serving.  If you eat soup in more normal sized bowls or portions this would easily make 12-16 servings which would be between 20-25g carbs per serving.  You can further reduce the carbs per serving by using less than the entire 12 oz package of noodles.  As you can see it was quite a lot of noodles, but that is how everyone in our house likes it.