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.

Advertisements

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.  Continue reading

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

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.

***********************************************
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}