Currently, diabetes makes me feel like how my cat looks

photo via me, the obvious best photographer of the century

I have no recollection of how or why this picture of my cat ended up in this previously untitled blog post, but I'm rolling with it. 

Anyways, hi! It's been about a year since I've last posted (I blame college, as usual), and wow has my diabetes been a certain five letter word lately. Part of the blame is on me; I definitely was not doing my finest carb counting. (Sorry I abandoned you, measuring spoons and carb labels.) Add messed up basals, ISFs that aren't working, that awkward month after spring semester, plus a week of camp, and you've got yourself one nasty math problem.

After 2 nights of no sleep because of that aforementioned math problem, I was exhausted. I'm 99% sure I cried every day. On night 3 of frustration and sleep deprivation, I decided to ring up the on-call endocrinologist at o'dark thirty. I explained my situation and she told me: "Try giving yourself shots and changing your site because you really need to come into the office, so we can look at your blood sugars." AKA what I had been doing, while waiting for my appointment to come up. (I had actually changed my site 3 days in a row, so I had that site-changing thing covered.) I'm sure you already figured this much out, but I was just a little mad. (Shocker, am I right?) 

I called my dad the next evening to vent and he suggested going off my pump for a few days to figure out what the problem was. Begrudgingly, I did. I like my pump; it makes my life easier, decreases the amount of needles I insert into my body, has my CGM on it, and remembers my basals, ISFs, and carb ratios for me. My pump also makes me lazy. It allows me to constantly cover food 15 minutes after I eat it, lets me forget my ISFs, and keeps all of the data the doctor needs for me, so I don't have to do much or look over any data. By the time I went on my short pump break, the cons definitely outweighed the pros. 

Since I had no clue what was going on in my life, diabetes-wise, and I was on shots (which do not remember carb counts, insulin dosages, or ISF factors), I did the thing I hate. Logging. I used Tidepool Mobile, which is a no-pressure app that lets you take notes. That's it. You you only tell it what you want to; it's very low-stress.

As I typed my 3 word blurbs, mainly consisting of my blood sugar, carbs, and insulin given, I started noticing trends. My blood sugar wouldn't go down to around 100 until I used my lowest ISF, I needed more Lantus than my current total basal was giving me, rage bolusing doesn't actually work (note to self: seriously, just wait 1 1/2 hours before giving yourself insulin!), and covering food before I eat it is much more effective than covering it afterwards. A lot of these seem like easy things to realize, but when you've been diabetic for over 14 years and haven't been paying attention for a while, you tend to forget the basics. 

3 days after going on shots, I changed my ISFs from anywhere between 1:40 and 1:50 to just 1:40, I raised my basal to equal 22 units, around 2.5 units higher than I was getting before, and I am committing to waiting until my pump finishes giving me insulin before I dive into my food. (Patience is a virtue, even when it comes to diabetes, apparently.) 

I put my pump back on today, even though three days of data isn't really enough to make the perfect changes. It just feels so weird to be without my pump. (And I want to see if I actually fixed my issues or if I need to go on a pump break. Which hopefully I don't because a pump break seems like a VERY big change and we all know how I feel about change.)

So what exactly is the moral of this story? Sometimes you need to take 80 steps back, take a giant breath (even though you REALLY hate doing that), and go back to the basics. It might just help.

Postscript:

JUST KIDDING. Moral of the story is definitely that my cat understands my feelings on a spiritual level. 

And now that I've written this blog post and got out my ~creative energy~ I should probably stop putting off studying for my chem exam tomorrow. #pleaseprayforme

CGMs, Logging, and Too Much Information

I wrote this a long time ago; like almost a year ago. Since then, I've been diagnosed with anxiety and depression which explains a lot that's going on in this post. I'm still publishing this without any edits from the last time I worked on because while I know there are so many benefits of CGMs, I also feel that it's important to talk about the negatives, so everyone with or without diabetes can understand the big picture; so people remember that CGMs, pumps, and logging still aren't a cure. They can cause issues on their own. Mindy also has a ton of great posts about issues with CGMs, similar to mine, so I urge you to read her posts, as well.
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via Beyond Type 1

If you know me well, you probably know that I can get a little obsessive and I am quite the perfectionist at points. I'm pretty Type A. (I have a planner with 17 check boxes for each day that I can write in things down to the hour in, if that tells you anything.) Naturally, this can translate into my diabetes self-care. I never really realized I had a problem with it; I always thought that feeling burned out after a few weeks of writing down every blood sugar, every food I ate, how much insulin I gave myself, and checking my CGM many times an hour to watch for spikes (and obsessing over when I spiked below the yellow line) was just proof that I'm pretty much a failure and trying to make fine-tuned adjustments to get my A1C down to below 7 was a useless measure. That sounds dramatic, but it was honestly and truly how I felt.

It took about two years for me to even realize that my methods of logging and meticulous attention to every blood sugar that my CGM supplied to me was a problem. The first hint that this wasn't exactly normal was when during my first year as a CIT at camp, my clinician told me after seeing my logs for multiple that I didn't need to test my blood as much because camp was a time to relax on my diabetes management. I, of course, brushed it off and told him that I was fine testing more often because it made my blood sugars better. I also got compliments later that week about how good my blood sugars had been. I got home and told this story and honestly felt proud that I was supposedly "testing too much," since, after all, I did have some of the best blood sugars out of all the CITs. (Of course, they were also having a much more fun and relaxed week, which I would much have preferred looking back.)

I'm pretty sure my obsession with numbers began to manifest when I got my CGM. I loved the data and all the numbers it could give me, so naturally I took advantage of it and checked my blood sugar as much as possible on my CGM. I got my first CGM halfway through my freshman year of high school, which was about a year and a half after I had struggled with my own obsessions with wanting to be skinny, which lead to unhealthily dieting and counting calories in an attempt to lose weight. This gave me a sense of control over my life that I desperately wanted; getting a CGM also gave me a sense of control over my blood sugars, and therefore my life. Naturally I had to do all that I could to ensure that all 288 readings on my CGM were in between the lines. Looking back on it now, I didn't realize that this want to keep my blood sugars perfect all the time was particularly unhealthy. After all, who doesn't want to keep their blood sugars perfect 24/7?

My second realization of this lack of normality in my personal view of my CGM graph and logging strategies came at camp again, a little more than a year later. I ended my last summer before college at Camp Kudzu and was already a little exhausted by this point. I had just been traveling the week before and camp is also pretty fun, but pretty exhausting. On top of that I was stressing because I've always felt like I've been the odd one out amongst the CITs, so I was feeling left out (to no fault of theirs, I'm just not good friends with most of the girls because we didn't all go to the same sessions every year growing up) and the cabin I was working with for the week was also causing me a lot of stress. Add exhaustion, plenty of stress, and a lack of sleep due to my blood sugar going low almost every night until 1 or 2 am and you will get the perfect storm for a CGM induced breakdown from me.

I had my CGM with me at camp because I have always hated having to take my CGM off. Whenever I would run out of sites or my battery would die, I would constantly test my blood (until it got exhausting for me) because I was sure I was missing some low or high blood sugar that my CGM would have told me about. Having my CGM at camp made all of the crazy blood sugars that come along with suddenly being put in a very different environment for an entire week all the more visible and obvious to me. As a CIT 2 I was allowed to, for the most part, do all of my insulin dosing, blood testing, and typical camp diabetes care, as long as I checked in with my clinician in the morning and at night during the CIT meeting.

During our Tuesday night meeting, that perfect storm I mentioned earlier took place. I was exhausted after a stressful day of being at camp and my blood sugars kept going low for a long time, spiking up to the mid 200s then dropping back down and staying low. As I was showing my graph to my clinician, I began crying out of frustration. Seeing the graph go up and 3 or 4 times, despite my best efforts to stay around 100 was making me incredibly angry at myself for not being good enough to at least be flatlining. I was already making my clinicians a little annoyed because I was purposely running my blood sugars lower than what camp wanted me to be at (I was staying between 80-100, while camp wants 120+) and I think at this point they realized what was going on before I even did.

My clinicians promptly told me that they were taking away my receiver from me because I was having an information overload. They gave it to the head staff that stayed with CITs in our cabin and told me to take a break. Naturally, I did not want this to happen at all, as my CGM is my security blanket of control over my made up ideal of being able to achieve perfect blood sugars.

After not looking at my CGM for what seemed like a lifetime, (which in reality was less than 12 hours) I was given it back the next morning after promising to only check my CGM once per hour. This was an incredibly difficult challenge for me, as I was so used to checking my CGM every 10 or 15 minutes, but I did make it through. I began by choosing my one glance per hour carefully, in an attempt to get the most out of that one check. As the hours and rest of my week at camp went on, I began to realize that I had stopped checking my CGM and hadn't even noticed it. My blood sugars were a little higher than what I wanted them to be, but I wasn't spiking as much because I wasn't micromanaging my blood sugars every five minutes.

A few days later, I talked with Mindy about my CGM issues and what had happened and logging came up and I admitted that logging has always been an issue for me and she told me it was for her, too; in fact, she doesn't even log anymore because it has a similar effect on her as it does me. I was shocked and relieved to find out that I wasn't the only one that had issues like these. She also talked with me about my CGM and asked me a question I haven't quite got around to dealing with yet: does your doctor know about your relationship with your CGM? My answer was and still is simply a no.

I haven't mentioned it to my doctor at all because a) it's always awkward to randomly bring up my mental health in relation to logging and CGMs in conversation (especially when your parents are in the room) and b) I'm probably changing endos to an actual adult endo soon, so I don't see much of a point to bringing this up. I'll definitely mention it to my new endo, but I'm just not sure where to go from there.

I haven't logged since I got back from camp, besides when I upload to diasend to have two weeks worth of logs for the endocrinologist and I have been doing a lot better about not checking my CGM obsessively. My big question is where do I go from here? I would love to get my A1C down and to have better blood sugars, but I'm not sure what I can do without obsessing over every single number. Is there anything to do or am I just kinda stuck?
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You don't have to answer my questions, as I'm getting professional help for my anxiety now and we're working on my obsessiveness. Let me know if you all also have CGM issues in the comments, I'd love to talk with you!

New Year, New Pump! (Maybe)

My parents are pestering me to write a new blog post, so here mom and dad, this is dedicated to you. Also, I'm very aware that my last blog post made me seem a little unstable (To be fair, I kind of was at that point.) and well, that is college for you. Change is not my favorite thing on the planet, as I'm sure you all can tell by this point, but college has gotten much better for me since I wrote that post 4 months ago. (So don't worry too much about me, things are looking up!)

Anyways, on to the excitement! I got a new pump! And a shiny, brand-new t:slim X2, no less! Are you waiting for the rave review and for me to tell you how happy I am to have moved into the modern era of pumping from my scratched up, old Animas Ping? Yeah, I'm sure you figured out that isn't how I'm currently feeling about my new pump. I've been on practically the same pump since I began using one 11ish years ago. I started off with an Animas IR1200 and then went to the Ping and have stayed with it until now. I'm also not a giant fan of change, so that is not really helping me out in this situation. The best way for me to explain my feelings, naturally, is through a list of pros and cons, so here, for you is a list of t:slim X2 pros and cons.

Out with the old and in with the new? Maybe?

Pros:

• I can finally type in my carbs/ blood sugar super quickly, rather than having to press an up or down arrow for 15 seconds to get a carb count/ blood sugar in my pump.
• It's smaller and just looks nicer, and (hopefully) there is no paint for me to chip off of this pump.
• Being able to have profiles that include not only basals, but also I:C ratios, ISF, and bg targets is super nice. I know this will come in handy at camp and being able to change everything for one time point instead of each setting separately is quite convenient.
• The biggest thing about this pump for me is that it can be updated to keep up with new developments in technology. At this point, just being able to see my CGM on my pump isn't that important, but the possibility of it having an auto-off algorithm for low blood sugars using my CGM is pretty nice. Since updates can roll out for this pump, I will be able to stay caught up with new technology instead of having to purchase a brand new device once the technology becomes available.
• Tandem's customer service is awesome. When I upgraded, they were super proactive about keeping me updated with any new info involving getting it approved and I like how they can text me now if they need info.

Cons:

• The clip on the t:clip case is awful. It sits too low on the pump, so my pump is constantly unclipping from my pants or wherever it is, which is extremely inconvenient. I'm currently using it without the case and putting it in the waistband of my jeans because the clip is basically useless to me. (Thankfully there is a fix: trying one of these attachable clips. I still think that Tandem should have a better one available for consumers.)
• I can't see the exact amount of insulin in my pump until around less than 50 units. Why? If my IR 1200 could do it 10 years ago, Tandem's pump should be able to, as well. (And why is it that after I first refill my cartridge, all it tells me is 120+ even though I put in around 180 units to start with?)
• I miss seeing my basal rate on my home screen. I know it's one tap of the screen away, but I like seeing it all the time.
• I can't feel my pump when it vibrates at night. My Animas was much "louder" in that sense and it was much more likely to wake me up, while this pump barely vibrates and I don't notice it a lot, even when I'm wide awake.
• All of the warnings are a little obnoxious. I get one warning before I change my temp basal to 0% and then a warning 5 minutes later that I have set my basal below half of my normal basal. Yes. I know. I did that for a reason.
• Sometimes when I'm putting in carbs or insulin, the touch screen will press the incorrect thing/ I have to press the same place twice or the screen will randomly turn off. I can press the power button and it comes back to where I was, but this is a little obnoxious. 

These are my feelings and Mindy's (I love her, by the way! We talked at camp about me and my CGM obsessiveness, which is a post for another time... ) post on CDN made me feel better about my choice of a new pump, while Kim's post (also love her, she's pretty much been my DOC hero for years) made me worry a little. So basically, I'm still kind of conflicted about the whole thing. A positive step is that I did put my t:slim back on after taking it off last night. (Baby steps!)

I'm pretty sure there is a 30 day grace period for new pumps after training, so hopefully I can figure out what I want to do by then. (And I haven't even been trained yet! Also- please don't operate a pump without training that is against FDA approval and I cannot recommend that. Especially if you've never used a pump before.) 

So there's my hot take on my new pump and my slightly conflicted feelings. Maybe I'll grow to love it or maybe I'll be the only person my age to like old technology better. I guess we'll just have to see. (Don't worry, I'll keep you all updated either way.)

Happy New Year!

I just wanted to pop in and say Happy New Year before I go back to my regularly scheduled blogging. 2016 was definitely an interesting year, to say the least and even though I know the new year is technically just another day, I'm still excited to see what it holds! I'll save you the recap and just quickly mention that my 2016 ended on a high note because I finally was featured on Beyond Type 1's instagram! I submitted my photo and story and after 6 or 7 months, it finally got posted!

Meet @sarahspillerr "I live beyond by not being ashamed of my diabetes. This has allowed me to easily talk to others about my diabetes and to able to advocate for myself and others through blogging and going to summer camp with other kids with diabetes. I strive to be a role model for people my age and younger, so they know that living with diabetes isn't a sentence to a life of boredom; it's merely another challenge that can be overcome in life. (A challenge that also happens to make you kind of amazing.) My name is Sarah and this i show I live beyond!"

A photo posted by Beyond Type 1 (@beyondtype1) on Dec 30, 2016 at 7:52pm PST

That was an exciting way to end my year, diabetes-wise and I'll also take this opportunity to shamelessly self promote my instagram and twitter. (Sorry guys, I had an opportunity and had to take it...)

Have a fantastic new year, I'll talk to you all soon!

I Guess I'm in College Now

Well hello everyone. Since I'm posting this you can now rest assured that I am still alive after my first (almost) month of college. Do I like it so far? Absolutely not. Will I survive anyways? Probably. My first weeks of college have definitely not been my favorite weeks of my life. Let's just say I cried and called my parents almost (sometimes simultaneously!) every day the first week. I still haven't finished my Diabetes for Dummies binder for my roommate and I'm running behind on everything else, too. That's college for you though, isn't it?

Rush week was exhausting, but also super fun. I was worried that I would be low all the time, since everyone is constantly walking to new houses in the hot August sun. Thankfully, there were snacks at all of the houses throughout the week, so that never happened and I got to stockpile a bunch of snacks. In case you aren't familiar with rush, it's basically a week of speed-dating to find find a group of girls you get along with and are similar to, so you end up in the right sorority. Rush days can run from 6 AM to 7 PM some days. To add to the stress, you have to be asked back to by the sororities, so there is a chance that even though you paid to participate in the entire week of rush, you may not be allowed to. I did end up getting into a sorority, which I loved, but I dropped out because I'm not all about the #collegepartylifestyle and the cost of being in the sorority was too much for me to justify right now. (Plus I don't have enough time at the moment.)

Besides rush and crying episodes, my life hasn't been too exciting. I missed my first 8 AM class Monday and I blame the fact that for the last month, my blood sugar has been low and it takes until 1:30 or 2 AM to go to bed, and then I'll get up and be low again. It's awful. My friends from camp recommended eating something with protein before bed and starting a -10-20% temp basal to make sure my bg doesn't drop, so I'll be trying that ASAP. Let's cross our fingers and hope that works because I'm exhausted by all of these lows. (I guess on the positive side, my A1C is probably great because I'm low all night...) Update: my blood sugar has now been running high for the last two days. Go figure.

The aftermath of a month of lows: juice boxes, granola bars, and two empty jars of glucose tabs.

I'm getting involved in UGA's College Diabetes Network chapter, as well as Wesley, choir, quiz bowl, viola lessons, and probably 20 other things I've forgotten, so I'll be sure to update you all on how those are going as time goes on.

Moral of the Story: I'll let you know when college becomes fun.

Life Updates

I wanted to go ahead and update everyone on what's going on in my life, in case I go MIA on the blog for a bit. I began writing this while on vacation in Isle of Palms, which is a barrier island off of the coast of South Carolina. I love it because it's not too touristy, but is also not completely in the middle of nowhere. (Which is always preferable, for me at least.) My life is about to become crazy because I have so much going on.

I came back from vacation Thursday because I leave for camp on today, so I had a day to unpack, relax, and then re-pack all of my things for camp. I get back from camp the following Saturday, then I'm going to a Twenty One Pilots concert with my sister that night, and after all of that, I head off to move into college on Sunday. Needless to say, my life is going to be extremely busy.

This is my motto for the next few weeks/ months because of all of the change that's about to happen:

A photo posted by Sarah (@sarahspillerr) on May 31, 2015 at 11:35am PDT

I'll be going through sorority recruitment before classes start ad the classes begin on August 11th, so I'll be thrown into the mix of college life pretty quickly. That probably means that my blog posts will slow down a bit. I'll definitely have plenty to write about: camp, rush, college, and everything else happening, but I'll probably have to take more time writing posts since I'll also have tons of classes to study for, viola lessons, and everything else going on in my life.

So don't worry too much if I'm not posting as much. I still want to blog and I will, I might just have to figure out how to budget blogging into my schedule before I get back to posting weekly.

Orientation & the DRC

I got back from orientation a few hours ago and I am absolutely exhausted. I had so much fun, but there was so much to do, so I am inevitably ready to sleep for 12 hours and I already took a nap on the car ride home. Needless to say, so much happened at orientation that I couldn't talk about it all, but I'll try my best to talk about as much as possible!

Day 0: (aka the day before orientation)
My dad and I took the 1 1/2 hour drive to UGA from our house because I had an intake appointment for the Disability Resource Center. (Which will now be referred to as the DRC because 3 letters is easier to type than 24. And I'm a little lazy.) I never had a 504 plan in high school, so having to get all of the paperwork from my endocrinologist and knowing what to ask for, accommodation-wise, was a little strange. At the Dawgs for Diabetes campus tour I went to last November, it was recommended that all diabetics going to college get involved with their campus disability resource center, since they can do a number of things to help out diabetics on campus. This includes writing letters of introduction to professors, so they know you are diabetic and also so they can list out the accommodations requested. I asked to be able to have food and water in class. (In case I have a few professors that don't usually allow any in their classrooms.) I'm also asking to have the ability to move test days/ have more time on tests in case my blood sugar suddenly drops or my blood sugar has been running high all day, since my ability to concentrate on anything decreases when my blood sugar is super crazy. (Side note: I don't plan on abusing that just because I haven't studied for a test. Even though I'm sure it may be tempting at some points...)

At my meeting, my dad and I met my disability coordinator. She's the person in charge of making sure I receive all of my accommodations and is the person I can call whenever I'm having any issues related to my diabetes and doing things on campus. She was really nice and we went through my medical history, my previous accommodations in high school, (aka none) and talked about teacher letters. She said that those might be emailed to teachers, but I might also have to take them to my professors myself, which I don't mind, since I plan on introducing myself to teachers anyways. She also gave me some tips about the gym; apparently, bags aren't allowed in the actual gym, so if I ever have issues bringing my blood tester or supplies in, I can give her a call and that should be cleared up. My meeting lasted around 20 minutes and was pretty to the point, which I can always appreciate.

We spent the rest of the day going to the music school to ask about the cost of private music lessons, since I'll be continuing viola lessons at the university. After that, we went to Target to get a shower caddy and sheets, since I was going to stay in the dorms for the night. Then, we headed back to the hotel and I worked on doing my alcohol and sexual assault online education courses that I'm pretty sure all colleges require now. (That's an hour and a half of my life that I'll never get back.) During the marathon of online courses, my mom called to let me know that my CGMs had been shipped (finally) and, needless to say, I was happy about that. We ate dinner at Taziki's Cafe, which has yummy Mediterranean food. (I recommend the grilled veggie gyro; it was delicious.) Of course, we had to go visit Insomnia Cookies for dessert. Everyone in Athens is obsessed with their cookies (probably because they deliver until 3 AM) and I got a Chocolate Peanut Butter Cup cookie, which was so good (and probably definitely had tons of carbs).

Cue my obligatory Athens photo at the MLC: (I took this same photo last time I went to Athens.)

A photo posted by Sarah (@sarahspillerr) on Jul 15, 2016 at 4:47pm PDT

Day 1: (aka day one of orientation)
We had to be at the residence hall I was staying in for the night at 7:30, so I could move in and leave all of my stuff in my room. I was on the ninth floor and let me just say, I'm very thankful that I'm only on third floor in my actual dorm. After this, orientation began. Cue 20 million different panels/ meetings that included introductions to orientation leaders, talking about life at UGA, learning about the specific college your major is part of, and how alcohol inherently leads to anything and everything bad that ever happens on campus. As I was leaving the music major room to ask a few questions about minoring in music, a mom stopped me to ask if I had a pump and we talked about how her younger daughter was diabetic. She asked about what I was doing diabetes-wise to prepare for college and asked if my roommate knew about my diabetes. We talked for 5 or 10 minutes while my dad and my friend played Pokemon Go. (I refuse to play it.)

Later that day, I ended up getting on a bus super late and made some remark about how holding on to the straps on the ceiling of the bus would be fun, since I'm super short. A guy offered his seat to me, since he was way taller than me (which was very nice of him). I sat down and had to cover the lunch I just ate and got into a conversation with his mother about diabetes and endocrinologists. She told me that if I'm looking for a new endo, she recommends SEED, since she goes there. (That's two diabetes encounters in one day... I couldn't believe it.)

My friends and I had dinner made by the dining hall and let's just say that the veggie burgers, cupcakes, and everything else there was definitely a food highlight. I got back to my room after going to the resources fair, where I talked to a few people at the College Diabetes Network Booth and a ton of other organizations. This is also the point when I walked up nine flights of stairs to get to my dorm. #notfun I also found out that community bathrooms are not as bad as I thought they were and then I proceeded to go to bed because all of this in one day was absolutely exhausting.

Day 2: (aka the final day of orientation)
My roommate and I woke up late (as usual) and rushed to get to breakfast. Thankfully, we were only five or ten minutes late. I went to more sessions about how alcohol is bad. (Do you see a reoccurring theme here?) There were sessions about Greek Life and then I had my advising meeting, so I could start registering for classes. There were a few chemistry related class crises, but those were thankfully fixed. My dad and I also managed to lock the keys to our car in the trunk in the midst of all of this and having to break into the car to get those was definitely interesting. After all of this, we could finally head home. Orientation was super fun, but so tiring, so I was glad to be home.

Hopefully you guys didn't mind the word dump, but I wanted to share as much information about the DRC/ orientation as possible. Also a reminder for anyone going to orientation: make sure to bring snacks/ low supplies for nighttime because dining halls take forever to get to and I'm not sure if there are vending machines in the dorms. I forgot to bring glucose tabs, but the school gave everyone puppy chow, so luckily, I had something to eat for my annoying low that night.

If you have any questions about the DRC or orientation, feel free to comment below and ask thos or shoot me an email!

Trouble in (CGM) Paradise

Okay, I have been having quite the trouble getting my new CGM. I'm upgrading from a Dexcom with Share to a G5, which you wouldn't think would be that big of an issue, but apparently it is. This all started about a month ago in the middle of June when my transmitter started giving my a low battery alarm. I figured I could call customer service and ask if I could upgrade, since I've had my current one forever and I would love to be able to see my CGM data on my phone. I called on the Sunday I started having low battery alarms and was nicely told to call back Monday during business hours, so I could talk to the people in charge of upgrades to get started

After calling them during lunch hours at the day camp I was volunteering for, I was told that I would need to call my distributor (Liberty Medical, which recently bought out my old distributor, Neighborhood diabetes) to get everything ordered and ready to go. I then called Liberty, and was told I was approved to get a new one; all they had to do was confirm my insurance info and then send out my prescription to my endo and I should have it in the next few weeks. Two days later, my mom got a call asking to confirm some insurance info, so I called Liberty back and gave them my info, assured this would happen pretty soon, especially since my transmitter was dead.

A few weeks later, I still hadn't gotten my shiny, new CGM, so I gave Liberty a call and they told me that they were waiting on my endocrinologist to send in their prescription. I gave my endo a call and left a message for her assistant and my call was never returned. Yesterday, I got fed up with all of this and gave Liberty another call. Apparently my endocrinologist still hadn't sent over my prescription, which was ridiculous, since it has been almost a month. I called the doctor's assistant twice and left a voicemail, but wasn't sure if I had called the right extension, since there was no message saying I had reached my endo's assistant, just a generic voicemail message that said to leave a message after the beep. At this point I was furious because no one was telling me anything and I couldn't reach an actual live person. My mom told me to call the practice manager to talk to him, but he also didn't pick up, so as a last resort she recommended calling the scheduling department because they usually have to pick up. After calling twice, someone finally picked up and I explained my situation. She said she could transfer me to the person in charge of CGMs. Relieved, I let her transfer me and then got a voicemail message saying that this person was on vacation until July 27th. I was so fed up with this at this point, but I left her a message and hung up.

At this point I was desperate for at least a transmitter and I called Dexcom to ask if they could try to send me a replacement transmitter until I could get my new CGM. I was told to call Liberty because they are in charge of all distribution, so I did and the woman on the line told me she couldn't do anything to help. After that I started crying because I was so mad at everyone for seeming to not care one bit about whether I have an actual, working CGM. My mom reminded me that we had an endo appointment the next day, so we decided to talk about it with them, in person. That way they at least had to talk to me, rather than sending me to voicemail.

The next day, my mom asked if she could speak to the practice manager and talked to his assistant. Apparently the endo sent the prescription last week and that Liberty should already have it. I called Liberty and explained my situation for the 10,000th time, and after talking to the documents department I was informed that they did in fact have the prescription and had been in possession of it since July 1st. An entire week ago. They told me that they would now be sending my insurance the info for approval and I asked how long it would take: "Oh probably 7-10 days for approval; we're not sure when you'll get your CGM." Great. So now I'm waiting for my CGM for an unspecified amount of time.

I'll be calling back next week to make sure everything is still going into motion, so I know what's happening, since Liberty obviously has no clue what the heck is going on. My endocrinologist also mentioned that Liberty has been moving very slowly ever since they merged with Neighborhood diabetes, so that's always promising.

While I was sitting in my dad's hotel room the night before orientation, (There will be more to come about that soon!) he called my mom to let her know that we were safely at the hotel. While on the phone, my mom told him that my CGM had been delivered to my house! I honestly thought I was going to have to call them sometime Thursday during orientation, so this was definitely a pleasant surprise, even though I couldn't use it until Thursday night. I asked my dad to call Liberty to check and see if my Dexcom sites had been shipped too, since you never really know with distributors these days. (See above post...) Thankfully, my sites came too, so all is well for now. At least until 3 months from now when I have to order more sites...

Moral of the Story: I can finally wear my owl GrifGrip and that is the real important thing here.

I'm Being Opinionated, For Once

Disclaimer: I don't usually like to get involve in very opinionated things around the DOC, but today I felt like I wanted to get involved, so naturally, this post is really really long, so if you don't want to read it, please don't feel obligated. This is my own personal opinion on the possible FDA re-labelling of CGMs, so feel free to disagree because it is an opinion, but please don't be mean about it. (Even though I know the DOC isn't mean, I have to include that.) Oh and a final note: take my opinion with a grain of salt. Now, enjoy reading this too long and MLA cited post about why I don't want the FDA to re-label CGMs.
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After reading Ally's blog post (Apparently I've been very inspired by her lately!) about the pending FDA approval of CGMs as devices that can be used to dose insulin off of, I realized I totally agreed with her opinion on the matter. Before reading her post, I hadn't thought much about whether or not I supported the FDA re-labeling of CGMs. I understood that most, if not all of the DOC support this re-labelling, as it could potentially increase accessibility for patients that have difficulty receiving approval from doctors or insurance for use of CGMS. This change could also potentially help the members of the DOC campaigning for Medicare's approval of CGMs as devices covered by their policies. I am in no way against any of these things. I love my CGM and wish that everyone had the same access to these medical devices, since they are extremely helpful in diagnosing blood sugar problems and patterns; unfortunately, I don't think this re-label of CGMs would reach the desired goals of many activists and this re-label could lead to many undesired consequences.

The FDA is planning on having a hearing with its Clinical Chemistry and Clinical Toxicology Devices Panel of the Medical Devices Advisory Committee to discuss "a proposed change in intended use of Dexcom, Inc.’s, Dexcom G5® Mobile Continuous Glucose Monitoring System (CGM) device so that, in addition to tracking and trending interstitial fluid glucose concentrations, patients can use the device as a replacement for their blood glucose meters and make treatment decisions based on the interstitial fluid glucose concentration reported by the CGM" (Warner). This panel will be open to the public to comment on and possibly help influence the decision makes regarding approving CGMs as devices that can be used for dosing purposes.

Most diabetes advocates have been supporting going to this meeting and advocating for this approval by the FDA, since "[many] individuals are already making treatment decisions off CGM readings, but currently, this is considered 'off-label.'" ("They Are Not Waiting. Neither Should We.") As an individual that occasionally uses my CGM to dose, I know that the FDA's approval of this simply doesn't matter to me or the many other diabetics that also use their CGMs to dose. The FDA also doesn't approve the use of CGM sensors in places other than the abdomen, yet many people, me included, put their sensors on their arms, legs, and hips without regard to the agency's current stance on this. Because of the fact that most diabetics already do these things, I honestly do not think that re-labelling CGMs as a primary care devices will change anything that diabetics using CGMs do.

Many people also support this re-label because the, "CGM needs a label replacement claim before it can qualify for a Medicare benefit category. Until that happens, Medicare will not even consider covering it." ("Sign diaTribe's Letter to the FDA Supporting Use of Dexcom CGM for Making Treatment Decisions - Due By July 13.) If Medicare refuses to support coverage of a device that is not labelled as a 'primary care device,' then the problem is not the FDA's lack of a certain label, but instead it is with the rules that Medicare has put in place to be used when reviewing devices for their own coverage approval. Yes, this re-label may solve the singular problem that diabetics are having: needing Medicare to cover CGMs, but it isn't solving the overall problem that could affect our community later on, if a similar situation occurs to the diabetes community, or the countless other communities also affected by Medicare's rules regarding approving certain medical devices. This solution to the problem could lead to the intended result of having CGM's approved for Medicare, but it could also be a dead-end. This re-label would simply lead to Medicare considering coverage for CGMs; it is not a guarantee.

I am less concerned about the re-label's possibility of success when seeking Medicare coverage, and more concerned about the actual safety of making this re-label without scientific research in support of this. Many report that CGMs have more accuracy than the average blood tester has, since the Mean Absolute Relative Difference (MARD) of the Dexcom G4 Platinum is 9.0%. According to Dexcom, "CGM accuracy is measured by [Mean Absolute Relative Difference] from a patient’s reference values obtained from blood glucose measurements from a lab analyzer, YSI (Yellow Springs Instrument)" ("Dexcom G4 Platinum CGM Performance & Accuracy"). A lower MARD indicates higher accuracy of the readings from the CGM when compared with the actual blood sugar of an individual, so this number is amazing and much more appealing than the 15% margin of error most blood testers have. This MARD, however, does not show that readings from interstitial fluid (the fluid used to test blood sugar levels with CGMs) are often much less accurate in times of blood sugar instability. According to the study "A Tale of Two Compartments: Interstitial vs Blood Glucose Monitoring," interstitial fluid readings are only truly this accurate when blood sugars are stable, while they are much less accurate when blood sugars are rapidly changing, which is often when CGMs are needed the most to be used for blood sugar monitoring and potential dosing. The study states the following:

Because continuous glucose sensor manufacturing has not progressed to the accuracy and precision of blood glucose meter strips, sensor glucose signals must be calibrated against corresponding blood glucose meter levels. Such calibrations transforms the sensor signal into a glucose value and assumes that the plasma-to-IF glucose gradient remains relatively constant. This assumption will not be valid if sensors are calibrated during rapid changes in plasma glucose, which is a major source of sensor error. The effect of sensor lag on performance is most obviously seen during periods of rapid glucose rate of change (either up or down). Sensor levels may trail glucose levels by 5–10 min during periods of rapid change, but the most important effect on lag is to introduce error during calibration, which affects long-term sensor performance. Moreover, changes in plasma–interstitial gradient in certain physiological conditions, like insulin-induced hypoglycemia, may be misinterpreted as sensor inaccuracy (Cengiz, Tamborlane).

This study proves that interstitial fluid testing, when compared to blood testing can be much less accurate. As I read Ally's post, I actually had to retest my blood because I had been running high that night. My CGM said I was 248 with a straight right arrow, meaning that my blood sugar wasn't changing much, but my blood tester told me I was 301 and 329. (I double checked, to make sure it wasn't a fluke.) That is up to an 81 mg/dl difference, or a 2 u of insulin difference, which is huge for me. Covering for the 248 would have brought my bg down some, but not into my target range, and I would never know better if I only used my CGM. This huge difference is a major issue for me and I don't want to imagine accidentally covering someone for a false high and then having them go low because of it.

If studies done by scientists show that blood readings from CGMs are not as accurate as our meters, I'm going to trust them. My own personal experience shows this, too. Sometimes my CGM is more accurate than my meter, instead of being the other way around; however, that is because I don't wash my hands/ use an alcohol swab/ change my lancet before every check. That is something I could change (if I felt it was worthwhile); on the other hand, my CGM sensor checking my bg from my interstitial fluid cannot be changed by anything I do, so it's inaccuracies are not caused by user error, but by device error itself.

This potential re-labeling could also lead to a forced choice or lack of access to test strips and blood testers because if CGM's are given the label of a 'primary care device,' insurance companies may decide that since blood testers are also of equal importance (even though blood testers do not have this label, interestingly enough) and they will force consumers to choose one or the other, rather than being able to use both. Insurance companies may also simply disregard the label because blood testers and CGMs will be considered equal, but test strips and blood testers will still be incredibly cheaper than CGMs, so they will naturally lean towards only covering the cheaper of the two options. If insurance companies choose to approve individuals using both devices, they may begin to limit the number of test strips being allowed for daily use. Since CGMs must be calibrated only two times per day, this may be the new allowance of prescribed test strips for a day. Two test strips. That sounds awful and could lead to huge issues when someone is trying to ensure their blood sugar readings from their CGM are accurate, especially in times when blood sugar is increasing or decreasing rapidly.

If we want CGM's to be approved as accurate testing devices, why not go the scientifically proven route and petition for scientists work on improving CGM technology, so they are actually more accurate, instead of petitioning law-makers and FDA officials to support the re-labeling of a device that isn't supposed to be used for the purpose these officials are approving it for? Yes, this will lead to more CGM access, theoretically, but there are better ways of going about this. If we don't want to wait for science, we can work on teaching law makers, representatives, and healthcare company executives about how important CGMs can be for supplementing blood testing and improving blood sugars for diabetics. By doing this, law makers and representatives can push for CGMs to be covered by all insurance companies, including Medicare, which seems to be a large reason why people are supporting the campaign. We could also attempt to help influence law-makers to attempt to change the requirements for device coverage from Medicare, which would not only help the diabetes community, but also many other health communities.

Being 'off-label' also hasn't stopped anyone from putting CGM's in their arms or legs, using sensors for more than 7 days, or dosing with their CGMs, so this vote shouldn't change anything in that area. Instead, this action may lead to a situations Ally described, where people may accidentally cover a CGM high that is actually a mid-100s bg or people's access to test strips may be drastically reduced to off-set the costs of CGMs. And no one wants these things to happen.

The potential pay-off of making the "off-label" choices you already make approved by the FDA, and the possible increase of access to CGM's for all isn't worth these uncertainties to me and I don't feel comfortable supporting a cause that could unintentionally lead to the endangerment of people's lives.

Sources:

Cengiz, Eda, Tamborlane, William V. "A Tale of Two Compartments: Interstitial vs Blood Glucose Monitoring." Diabetes Technology and Therapeutics. June. 2009: S-11-S-16. Web.

"Dexcom G4 Platinum CGM Performance & Accuracy." Dexcom. Dexcom, n.d. Web. 19 July 2016.

"Sign diaTribe's Letter to the FDA Supporting Use of Dexcom CGM for Making Treatment Decisions - Due By July 13." The diaTribe Foundation. The diaTribe Foundation, n.d. Web. 19 July 2016.

"They Are Not Waiting. Neither Should We.." We Are DPAC. Diabetes Patient Advocacy Coalition, 28 June 2016. Web. 19 July 2016.

Warner, Jill Hartzler "July 21-22, 2016: Clinical Chemistry and Clinical Toxicology Devices Panel of the Medical Devices Advisory Committee Meeting Announcement." FDA. US Food and Drug Administration, 24 May 2016. Web. 19 July 2016.

An Endo Update

Today was my third quarterly visit to the endocrinologist and as usual it was exciting and simultaneously unexciting because that's how endocrinologist appointments go. The night before, I introduced my little sister to Diasend because both of us are eternally lazy when it comes to logging and this program makes it easy to upload data from all of your medical devices onto one easy to read chart that my endo likes. (And it's a little important that the endo likes it, since she is the one helping interpret the data.) My sister has a t:slim, so she can easily plug in her pump and upload data. I felt inspired to do the same with mine, but mine is an Animas Ping. That means that I had to pull out an IR Reader. 

At this point you may be wondering: "Sarah, what is an IR reader?" Oh well in the ancient days when I began using Animas pumps, they used these things to wirelessly transfer data from the pump to the computer. I even remember using one to change the song for my pump alarms. They may seem innovative/ easy to use, but it's not the wireless/ bluetooth type thing you're probably thinking of. I have to take my pump off, suspend, it, place it on a flat, non-moving surface with the back facing the reader, and hold it as still as possible until the green light that confirms it is lined up stays solid green. This process takes way too long and I may have had to hold my pump in place for an amount of time that made my arm sore. #thanksanimas (Here's a video if you care to know how this thing actually works.) Now back to your regularly scheduled endocrinologist-themed programming. Let's skip to the next day because all that happened after that was complaining about the previously discussed ancient technology and printing charts.

I was awoken at 6:45 in confusion because we had to leave at 7:15 AM to get to our appointment at 8:45. (You know, to compensate for Atlanta traffic.) Apparently everyone is on vacation and we didn't get the memo because we got to Atlanta at 8. That's uncalled for record speed. So of course, we did what any group of tired people that got up way too early for a doctor's appointment would do: we went to Starbucks. In case you were wondering, I got a hot chocolate with a shot of hazelnut (because #nutella) and an egg and cheddar biscuit, my mom got an Earl Grey tea and a blueberry muffin, and my sister got a iced green tea lemonade. I'm sure the endo was very happy that we all had a bunch of sugar before coming over.

We left Starbucks and arrived fashionably late (by two minutes) because that's just how we are. I signed us all in and I got to sign my own HIPPA release, so my parents can still see my medical files. (The excitement of being an official adult.) My mother also talked to the office about my CGM upgrading issues. (There will be a whole blog post for that next week because the story behind that is too long and exciting for just half of a blog post.) Thankfully, those should be mostly solved by next week and I should be getting a CGM soon. 

My A1c, which never seems to change according to my sister, was 7.2%. (It went down by 0.1%, so her point may be proven.) I'm not complaining about it, but I definitely want to work on going below 7%. We changed some of my sensitivity factors, since I always seem to be going to bed high as well as my evening basal to combat highs. I'll be sending logs in next week after I test those changes, so we should be able to see if those help out soon. We also talked about college and talking to my roommate about diabetes, as well as the Disability Resource Center, since I'm being put into their system next week. I'm doing this mainly so I can have testing accommodations. I'm having my official meeting with the DRC next week, so I'll share more about that in the next few weeks. I'm also super excited for my sister because she will be getting a Dexcom soon! I love my CGM and I think it will help her a ton, so I'm psyched for her.

I'll update you all on how my basal/ ISF changes worked, my CGM woes, and college, so stay tuned for that. I promise it's coming!