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.

Opinions

Oh written late at night angry blog posts, I have missed you so much. You always seem to be the perfect outlet for my general distaste for stupidiots. I haven't been really annoyed at people for diabetes related reasons in a while, so I really should have seen this post coming. So today's topic that is causing me annoyance involves people's opinions of my diabetes. Let's begin.

If you want to have an opinion of my diabetes, you need to meet some criteria. Let me make this a simple chart of questions and answers, so if you are even attempting to think about having an opinion, you can easily figure out if you are able to have a valid and respectable opinion of the state of my diabetes at this very moment. It's even color coded, just for you!

Just follow the arrows and I promise you'll find your answer in less than 45 seconds!

I made this fantastic and high quality (and by high quality I mean made in pencil, erased repeatedly, traced over in pen and sharpie, then scanned) poster for anyone that has ever been given an unsolicited opinion about your diabetes. It will take the potential opinion giver maybe a minute to figure out whether their opinion should be said and will save you from a lot of annoyance. I really wish that I had thought of this sooner because someone today had the nerve to tell me that I was a "crappy diabetic" because my blood sugar was high. (387 to be exact.) I'm not sure what qualifies as a bad diabetic, but I'm pretty sure that having one high blood sugar during the day does not mean that I'm a "crappy diabetic."

And after he told me that, we then continued to argue over why he can't have an opinion on the matter. I told him that unless you have an actual knowledge of diabetes that is more than a) you used to get low blood sugar occasionally and b) you know that 387 is high, YOU CAN'T HAVE AN OPINION ON MY DIABETES. I attempted to repeatedly explain that no matter how hard I try, I can never have perfect control of my blood sugar. The highlight of this whole argument (for me, at least) was this: "You have your medical devices which do the same thing as your pancreas, so you should obviously have perfect control of your diabetes all the time."

Excuse me? Has your brain ever even thought about the fact that diabetes affects every single person with it differently? I can't just magically tell my pump to figure out my exact I:C ratios, ISF's, and basal rates and then correct everything for me. I go to my endocrinologist every three months for a reason, in case you didn't realize that.

Well now that I have ranted, I feel much better. These posts are really therapeutic. I really do recommend doing this to get out your anger.

Moral of the Story: You probably can't have an opinion on my diabetes. #sorrynotsorry

(And now I should probably go back to doing my homework.)

It's Not an iPod!

The other day, I left my CGM in Scientific Research. (I didn't realize this at the time...) My AP Human Geography teacher got a call from the nurse because she had my CGM. I walked down to the nurse, she showed me my CGM, then I asked how she got it.

Apparently, the following happened:

1. I left my CGM in Scientific Research.
2. Someone took it to Gym.
3. Someone went to the nurse for unrelated reasons.
4. The nurse saw my CGM and asked the person about it.
5. The person told the nurse that it was their, "friends," iPod.

Yes, I made a label for it.

Luckily, the nurse isn't as stupid as the world thinks she is.

Moral of the Story: My CGM is not an iPod. There is no Apple logo; when you turn it on, a graph shows up; and it says "Rx only" on the back.

D-Blog Day 2012

Today is November 9, which means that it is D-Blog Day!
Yay!

This year's topic is:

Choose a form of Media Outlet to write an open letter to, such as NY Times, CNN, Local/National Newspapers, TV and why it is so important for them to let the world know that diabetes is more than just being overweight and having too much sugar. It is about reporting stories about Type 1 and Type 2 diabetes. Let them know what kind of things you would like them to write about. If there are specific articles or reports they got wrong, let them know about it! Let’s get it right! 

When I first saw this, it reminded me of the Oprah incident.
I'm pretty sure that all of us remember that horrible episode of Oprah. And to this day, I think all of us have at least some resentment towards Dr. Oz and Oprah. So on that note, I am going to write a letter to all of the  TV producers about what type 1 diabetes is really about.

Dear TV Producers,

Type 1 diabetes is a very serious matter that is often portrayed incorrectly. Most producers show the worst case scenario and won't show the world what type 1 diabetics really do during their day-to-day lives. Instead, you hyper-sensationalize the chronic illness so people are shocked, but want to continue watching your show. You never say anything positive about the advancements in diabetes technology, instead you focus on the negative aspects of type 1 diabetes. None of your TV "specials" about type 1 diabetes are even researched properly, and most of the time, you don't bother to bring in actual diabetes specialists.

If you were only to read on part of this letter, I beg you to read this. You need to do research before you talk about type 1 diabetes. First, all type 1 diabetics must take insulin to function normally. All type 1 diabetics must take insulin and if one diabetic takes more insulin than another, that does not mean that the person taking more insulin has a "worse" version of type 1 diabetes. It simply means that these two type 1 diabetics are different people and have different needs when it comes to the management of their diabetes. Type 1 diabetes is not "preventable...[or] even reversible." Contrary to popular belief, there is not way to reverse or prevent diabetes. You can't just eat some cinnamon and, suddenly, your diabetes magically disappears. And have you ever realized that if you brought in an actual diabetes specialist, not a heart surgeon, you might be able to portray what type 1 diabetes really is. If the people that are on your show can't even explain these things and have no experience with type 1 diabetes, you can never really show the "truth" about type 1 diabetes.

Type 1 diabetes, in fact, does not always result in horrible side affects like kidney damage, amputated limbs, and etc; these horrible things usually, but not always happen to the type 1 diabetics with poor control over their diabetes. Most type 1 diabetics can live relatively normal lives without organ failure or amputations because they test their blood regularly, count carbohydrates, and administer the proper amount of insulin. In my entire life, I have never known or had someone that knew a person with horrible effects of type 1 diabetes. Every type 1 diabetic I know has had their ups and downs with the disease, but none of us have known people with amputations or organ failure because of diabetes. With proper treatment during the day and night, type 1 diabetics can live normal lives at home, work or school, and at social events; type 1 diabetics are not forced to a life in the hospital with organ failure and amputations.

A type 1 diabetic's daily life is not nearly as tragic as you make it out to be. I am am a type 1 diabetic, so I do know for a fact that my life is not a sympathy story. I wake up every morning and test my blood. I eat breakfast and administer insulin through my insulin pump. An insulin pump is a device that has a certain amount of insulin inside it, and you can give yourself insulin with the push of a few buttons. The insulin goes through a tube and goes into your body through a small canula. I test my blood sugar 3 hours later and administer insulin if needed. This process is repeated every time I eat; I test my blood before lunch, eat, count the carbohydrates in my food, and administer the correct dosage of insulin, and etc. I go to the endocrinologist, a doctor that specializes in the endocrine system and diseases associated with it, to check up on my diabetes management and that is that. I don't go to the hospital every day for kidney dialysis. I don't go to the hospital constantly because I need limbs amputated. I go to school, do homework, play with friends and do anything else that a normal person does. The insulin pump and blood tester I use every day are part of my not-so-tragic daily life, and also some prime examples of positive advancements in diabetes technology.

On most TV shows, we learn that there is no known cure for diabetes and that diabetics can only give themselves insulin to control their diabetes, when really there is so much technology out there that helps diabetics control and manage their diabetes. You have already learned about the insulin pump, which lets type 1 diabetics only need to inject themselves with a needle once every three days, rather than having to inject themselves multiple times daily with a syringe. I also have a device called a Continuous Glucose Monitor (CGM) which tests my blood sugar once every five minutes. This CGM can detect blood sugar patterns, so I can fine-tune the amounts of insulin I need to take daily. These devices are amazing advancements in diabetes technology and are truthfully massive steps towards the cure to type 1 diabetes.

If you haven't realized by now that type 1 diabetes is not reversible, a tragic tale, or full of zero advancements in the related technology, you people are as truly incompetent that I thought you were. If you can realize that type 1 diabetics have relatively normal  lives and don't spend their days in a hospital and put a type 1 diabetic on television that isn't wasting away, then maybe you can show a special with the "truth" about diabetes.

Sincerely, 

Sarah Spiller, 

a type 1 diabetic for 8 ½ years.

Well, that is my open letter to the television producers of shows about type 1 diabetes. I hope you guys liked my long rant to these people. 

You can see everyone else's posts for D-Blog Day, and and all of the information about it here.

Happy D-Blog Day!

Just Shut Up, Please.

<rant>
I am so sick of people just sitting around and having fun insulting and demeaning people.

Oh, you can't have ice cream, you're diabetic. You're so weird because you are a vegan. You are inferior because you are different. Oh, you got diagnosed with diabetes at age 20? It must be Type 2. Oh, you're angry, you must be high.

I am so sick if people making assumptions about people and just being plain mean.

I have three words for you: Shut up, please.

Moral of Story: Or you can say you're sorry, like all of our Mom's taught us to. <\rant>

P.S. Thumbs up to you if you get the html reference.

To a Certain Troll on the Ice Cream Social Facebook Page

This is to a certain troll on Lizmari's Ice Cream Social Facebook Page (Which you should totally RSVP to!),

[We know you are an addictions counselor] But does that give you the authority to tell all of these type 2 diabetics that if they eat something with sugar or carbs, that they will become addicted? No. That doesn’t. That comment is very offensive to me, and I am not even a type 2 diabetic. Basically what you are saying is that because our pancreases don’t produce enough insulin to convert carbs to energy, as soon as we eat them, we will be addicted? That makes absolutely no sense, and I hope you will just leave like you said you would. You obviously don’t understand the point of this ice cream social. Maybe you should read a little before you start telling people how to live their lives, because it was clearly stated that “Just to clarify... With this event, I am not advocating that you go eat more ice cream than you can handle, or than can fit with your dietary standards. Any person is welcome to eat a sensible portion, and if needed, bolus accordingly. :)”. 

From,

Sarah (and Probably the Rest of the DOC.)

Moral of Story: Don't mess with the DOC.

Just stop talking already and listen.

It really bothers me when people make assumptions about diabetes, so here is a list of things, compiled by yours truly, of things I want to tell everyone that isn't diabetic:

1. When I say, "I'm high." I am talking about my blood sugar, not about taking drugs. (I mean, I only take insulin and Synthroid; and neither of those are narcotics.)
2. That thing attached to my side does not have Mario Kart on it, it is an insulin pump, not a Game Boy. They look very different.
3. I'm not going to leave the table to test my blood if you have been sitting by me at lunch the whole school year. (If you haven't sat by me before, I will.)
4. Yes, I can eat sugar.
5. No, my pump is not from the 80's; the screen is beat up, but I swear it was brand new technology four years ago in November.
6. Those little white tabs I am eating are called glucose tabs, and once again (see number 1), are not narcotics; they are tablets made of sugar. And no, you cannot have one!

It was new four years ago, I swear!

Now here are some things that every diabetic should know:

1. Diabetes isn't your entire life; you can have other hobbies! (I knit and have a knitting blog here: The Knitting Fish.)
2. Twitter is a wonderful place to chat about your diabetes. You can join many diabetics in #DSMA chats on Wednesday nights ant 9 PM.
3. Blogging is fun to do, but if it just isn't your thing, you don't have to! *GASP, I SAID YOU DON"T HAVE TO BLOG.*
4. Always be prepared for Endocrinologist visits. Have your questions and concerns for your endo written on paper or on blog.
5. Always have fun, and don't let diabetes hold you back.

To quote the great Kelly Kunik of Diabetesaliciousness: 

My greatest weakness (my broken pancreas) has become my greatest strength - and for that I am grateful.

 So make your strength, my diabetic friends.

PS: Non diabetics- use some time to educate your pancreas, so that something from my first list will not have to be told to you, again.