3 Tips For Anyone Turning 26 with Diabetes (and Switching Health Care Plans)

Do you have diabetes and will turn 26 in the near future? Will you be forced to switch from your parents’ health insurance to your own plan? If the answer to both of those questions is “yes”, then you’ll definitely want to take a minute to read my tips on how to make the transition as smoothly as possible. And even if you answered “no”, you still might find this to be a worthwhile read because chances are, either you or someone you know will have to go through this process, whether or not you/they have diabetes.

Here are the three most valuable tips I have for anyone who just turned, or is about to turn, 26 years old and is concerned about switching health care plans:

HUGGING THE CACTUS - A T1D BLOG
I figured out these tips the hard way. Save yourself a lot of frustration and time by following them A.S.A.P.

Tip #1: Ask your doctor for copies of all of your prescriptions. Do this well before your actual birthday. That’s what I did, anyways – I had a scheduled appointment with my endocrinologist at the end of April. That’s when I requested a copy of every single prescription she’s ever written for me, including for medications that I don’t really use anymore (e.g., Lantus, the long-acting insulin I used prior to my insulin pump). Then, I made multiple copies of these prescriptions, taking care to separate the originals from the copies. This tip really came from my mother, who told me that having the prescriptions now would save me trouble later. And she was right: When I did send in my Humalog prescription to Express Scripts, I did so with more confidence because I didn’t have to scramble to request it from my doctor.

Tip #2: Start the process of reordering supplies as soon as possible. Even if it means starting to reorder things on your actual birthday…do it. I’d say this is especially important if you’re running low on supplies. It took me nearly two months to start receiving stuff. Part of this was my fault because I procrastinated, and was also at an advantage because my mother took the time to order me plenty of extra supplies before I made the switch. But it was also the fault of the companies I was ordering from, who, for various reasons, didn’t send out my supplies on time or needed a longer period of time to review my orders before shipping them out. I’m lucky that I can say that I was never truly worried that I was going to run out of supplies, but the thought did cross my mind a few times, and it was unpleasant. So save yourself from aggravation and just get the ball rolling as soon as you can.

Tip #3: Keep records of everything. I keep a physical folder that contains receipts, prescriptions, photocopies, notes, and various other documents related to my health. I can’t say for sure what I’ll actually need to keep or throw away in the coming months, but I do know that it’s smart to hold onto this stuff in the beginning. That way, during my company’s next open enrollment period, I’ll be able to make informed decisions regarding things like how much money to put in my flexible spending account (FSA). Plus, any notes that I’ve taken during phone calls have already proved immensely helpful as I’ve needed to track down specific customer service representatives in order to take care of issues that have come up. It can be a little cumbersome to remember to keep all these papers, but I know it’s the right thing to do and that there’s no way that I’ll regret it.

BONUS Tip #4: Advocate for yourself until you get what you need. At first, I felt extremely awkward for calling Dexcom and Insulet every single day for a week. But then I realized that I shouldn’t. They weren’t going to make sure that I had my supplies: I had to depend on myself to do that. I also felt a bit stupid asking just about every customer service representative that I spoke to how everything works, but I eventually got over that, too, because it’s vital to understand this stuff, even when it seems extraordinarily complicated. So I’d tell anyone who’s going through this process, or who is about to go through it, to keep up the hustle. Don’t ever feel shame for asking too many questions or calling too many times; when it comes to all this, the limit doesn’t exist. Ask others for help when you need it (I spoke with all sorts of people in the DOC about my issues, and goodness knows that my mother provided me with all sorts of advice and support throughout this) and, with their assistance and a little determination on your part, you’ll get through this tiresome transition.

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Why is it so Difficult to Order Life-Saving Medical Supplies?

When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

Why is it so Difficult to Order Life-Saving Medical Supplies_
My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

When Diabetes Isn’t Responsible for an ER Trip

If something unexpected happens to me in terms of my health, I can almost always safely blame diabetes for causing whatever it may be. But when I absolutely, definitely cannot blame my diabetes, I can’t help but feel angry at my body for rebelling at me in ways that it shouldn’t. Particularly when those ways end up with me making a trip to the emergency room.

Let me set the scene: It was a Tuesday evening, around 7:45 P.M. My partner and I were watching an episode of Stranger Things (we’re not caught up yet so please, don’t spoil it for me). Suddenly, I felt an itch on my upper left arm. Like anyone would, I scratched it. But then it got more intense. Like, really, seriously itchy. I rolled up my sleeve so I would be able to scratch with greater ease, and was surprised to feel some bumps emerging on the itchy patch of skin.

I peeled off my sweater and stepped into better lighting in the bathroom so I could examine the area better. There was a large patch of red, inflamed skin on my arm that was covered with bumps that looked like hives. I was dumbfounded. Unsure of what triggered the hives, but alarmed by how swollen and irritated my arm looked, I shot a couple text messages to my EMT father and nurse best friend, who both advised me to get my arm looked at stat.

HUGGING THE CACTUS - A T1D BLOG
Stranger things have happened in my life with diabetes (just had to sneak a pun in there)

And that’s how I found myself in a crowded emergency room, tearful and furious at my body, on a random weeknight. Part of me was relieved that my diabetes didn’t seem to have anything to do with this (but see my recent post on Metformin and you’ll understand that I have some theories about that being the cause). But the other part of me was so pissed off that my body just couldn’t be normal for once. I felt that my body was lashing out at me like an unruly child, declaring its anger towards me in the form of an incredibly itchy, ugly rash. I couldn’t help but stew over the whole situation the entire time I waited to see a doctor.

Long story short, a dose of Benadryl cleared up the hives within an hour. The doctor was unable to determine a cause, since I couldn’t think of anything new introduced to my diet or any new scents/lotions/detergents used in my household. And insect bites got ruled out because the doctor was certain that a bite would be more localized and not spread in a giant patch on my arm. I’m still perplexed at how it happened, but I guess I just have to make peace with the fact that it did and be grateful for 1) making a total recovery from it and 2) not experiencing any issues with my blood sugars as a result of it.

When diabetes isn’t responsible for an ER trip, it means that it’s okay to still be upset about it, but also glad for not having to explain the intricacies of diabetes to every doctor and nurse that walks into the room…because I can’t think of a single PWD that would ever feel happy about taking on that happy task.

Why Waiting for Prescription Refills Feels Like a Pending Punishment

I’ve been waiting.

I’m waiting, impatiently, to learn just how much I’m going to have to pay for a 90 day supply of insulin.

I’ve been waiting for what will inevitably feel like a punishment.

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It’ll feel like a punishment because it will feel harsh and unavoidable. And it’ll be more intense than is fair because my only offense is having a pancreas that doesn’t work the way that it should.

Every time I log into the Express Scripts website, I feel a sense of dread sweep my body. I anxiously click around the portal until I get to the recent order screen (see above image). My eyes immediately flock to the blue box that will eventually display how much money I owe for my insulin.

It’s a process that reminds me of checking my grades when I was in college: After I took an exam, I’d enter my username and password into the student portal to find out whether grades were posted. I’d repeat this process multiple times a day until I found out how I scored. It was a nerve-wracking routine back then, but I wish I could tell my younger self that that was NOTHING compared to looking up the cost of my insulin.

 

Metformin Update #3: Is it My Imagination…or Side Effects?

Frequent readers of this blog are probably familiar with my journey with Metformin. If you aren’t, or want to brush up on my history with it, read here, here, and here in order to get caught up.

The big white “horse pill” that is known as Metformin has become a relatively solid part of my routine in the last six or so weeks. I’ve skipped doses here and there for varying reasons (i.e., on occasions when I’ve had two or more alcoholic beverages); otherwise, I’ve been taking it and monitoring my blood sugars carefully each day.

But apparently, my blood sugars aren’t the only thing I should be watching diligently.

METFORMIN UPDATE #2

Just like any other drug out there, Metformin comes with side effects…which I totally chose to discount from the beginning, mainly because my endocrinologist thought that the extended release tablets would mitigate the likelihood of side effects. I’m questioning that logic, though, after experiencing indigestion and general stomach discomfort within a few hours after taking my Metformin pill.

It didn’t happen just once. There were at least three consecutive days that I experienced these symptoms. Within an hour or so after eating dinner, I felt uncomfortably full – like I’d eaten a whole Thanksgiving meal instead of a normally portioned dinner. I know that I wasn’t eating a larger quantity of food than usual, and since I typically have a semi-insatiable appetite, I knew that it just had to be related to my Metformin dose.

I decided to do some more research into the side effects of Metformin. And I was pretty surprised by what I saw. Shocked, actually. Because evidently, a massive array of side effects can occur on Metformin. The stomach discomfort I’d experienced was common, but other side effects that caught my attention included restless sleep, muscle pain, cramping, and a rash/hives.

Very interesting. I’ve felt all of those things in the last few weeks. I chalked it up to overdoing it with my exercises, but…it’s not like I was doing anything new or particularly strenuous in my routines. I do a combination of cardio and resistance training, for about an hour most days of the week. I always make sure to stretch before and after working out, and yet I felt a soreness and achiness (mostly in my legs) for a few nights in a row a couple weeks back. There was even one night that I tossed and turned so much that I hardly slept a wink – the restlessness in my legs was that bad. And the rash/hives? I’ll go into more detail in a future post, but on a random Tuesday night, I experienced a breakout so bad that I wound up going to the ER. They cleared up within an hour or so of a Benadryl dose, but it was still a scary experience.

Okay, so I think I can safely blame all of these issues on my Metformin intake. But that still doesn’t quite answer why I was experiencing multiple symptoms so suddenly. My theory is that my body was struggling to adjust to taking Metformin consistently, and as a result, I was feeling the side effects. There’s no way for me to be sure, but I think this warrants another experiment…another break from Metformin. My blood sugars have been good on it, but have they improved so drastically that I can’t imagine life without Metformin?

The answer is a resounding no.

I’ll likely consult with my endocrinologist at some point to tell her my thoughts and theories. But for now, I’m taking a break for an unknown period of time to see if there’s any change in how my body feels. We’ll see how it goes.

Do You Have 2 Minutes to Spare?

If you’re reading this post, then the answer is YES – of course you have 2 minutes to spare. In that amount of time, you can share your opinions and help my dear friend, Heather, with her research.

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Make your opinions heard by taking this survey.

Please click this link to access the survey. It’s very simple: You’ll see 24 phrases that relate to diabetes in some manner. You’ll rate how often you see these phrases around the Internet using a scale of 1-5. Then, you’ll share which one resonates with you the most and which one you see the most on various diabetes online communities. And…that’s it! You don’t even have to share your name or any of your contact information. It’s quick, easy, and you’ll get to share your opinions in a way that will make a difference. I’d say that’s a great way to spend 2 minutes, wouldn’t you?

It’s Not Called Cryabetes

C’mon, Molly. Get it together. It’s not called cryabetes. I stared at myself in the bathroom mirror, giving myself an internal pep talk to keep the tears from flowing down my cheeks. I felt a little uneasy on my feet, so holding a steady gaze proved to be challenging after a few moments.

Why was I on the verge of an emotional breakdown? It was all my blood sugar’s fault, of course. For about an hour, I’d been hovering in the upper 60s to lower 70s. There are far worse blood sugar ranges to fall in, but I’d been feeling the classic symptoms of a low for that entire span of time – and it was really testing my fortitude.

My self-talk was fruitless; within seconds, the first few tears escaped from my eyes. It wasn’t long before a couple tears turned into full-fledged bawling. Alarmed by my outburst, my boyfriend tried to calm me down (he was aware of my low blood sugar situation) and attempted to use humor to get the crying to stop. Very quickly, he discovered I was a bit beyond that and that it was best to just let me be sad.

I was sad because I was tired and wanted to go to bed but it didn’t feel safe for me to sleep just yet. Safe to sleep. Can you imagine not feeling safe enough to fall asleep, even in your own bed surrounded by your own blankets in your own room, with your partner nearby?

So the tears came and went because, even though I tried my damnedest, I still felt so out of control in this situation. Not knowing how long it would take my blood sugar to come back up to a level that I felt safe to sleep at, not knowing what exactly caused this predicament in the first place, and not being capable of being mentally stronger than my diabetes all in that moment in time got to the best of me.

Definitely very chronically UN-chill of me, right?

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So sure, diabetes isn’t called cryabetes. But that doesn’t mean my emotional lapse – or any emotional lapses related to diabetes – wasn’t warranted. Crying can be healing, and in this moment in time, it was the only thing, oddly enough, that could make me feel a tiny bit better.