Wednesday, July 29, 2015

Why I Went Looking for a New Endocrinologist

Over the course of my 20 or so years living with diabetes, I've gone to 3 different endocrinologists.

Upon my diagnosis, the endocrinologist I was sent to helped me get things under control fairly quickly.  For the first several years, I had very good luck with my blood sugars. Perhaps I was in the honeymoon period.  But I also was (and still am) disciplined when it comes to diet, exercise and taking 4 shots of insulin daily.

When Fermin (my husband) and I moved from Coppell to Dallas, I decided to go to a different endocrinologist that would be closer to my new neighborhood.  He was rated one of the top doctors in his field in the area.  I didn't personally like him as much as my first doctor, but he was fine.  I mainly needed an endocrinologist for the sole purpose of prescribing my insulins and testing supplies because I was doing a relatively fine job staying in control of everything diabetes related.

But after a few years, I got tired of sitting in that stupid waiting room 1 1/2 - 2 hours each time I had an appointment.  I remember one day in particular, I had been waiting well over an hour.  The receptionist opened the little window and said, "Kerri, you can come on back to the room even though Dr. L is still at lunch.  He should be in shortly."  He wasn't even there all that time I had been waiting??  I was so mad.  While I was in that tiny room, waiting for him, I was getting more and more furious.  After an additional half hour or so, I walked out and told them I had to leave. Right at that moment, he walked in the door and said, "Ok, you ready?" and I replied meekly, "Yes..." without complaint.  But I never went back to his office again. 

I've going to my 3rd endocrinologist for the past 7 years or so.  I haven't really asked for much help, because I didn't think I needed it.  Again, this doctor was fine, but I didn't love him either.  To be honest, I hadn't even seen him in the last several years, but was instead just making all of my appointments with his PA.  I liked that guy personally- But.

But I've come to realize that just because my A1C has hovered from 6-6.8% the last few years, my blood sugar is not in good control at all.  Thanks to the Dexcom, I've become very aware of how often I'm in a range that's either too high or too low.  And it's way too often!

I think because of that decent looking A1c, my endocrinologists have left me on autopilot assuming I'm doing a good job keeping things related to my diabetes controlled. But that A1c is only a small window, and it only shows part of the picture.  The Dexcom has shown me so much more.     
my highs and lows during a typical day shown on my Dexcom cgm
I asked my last doctor for a prescription to get a Dexcom about a year ago, after my friend Tanya told me about it.  Not because my doctor told me about it, or suggested it.  I had to ask him about it.  And that was when I first started feeling like maybe it was time for a change.

A few months ago, I attended Type 1 Nation event hosted by JDRF, which was an all day event with different speakers about all things diabetes.  I learned so much that day.  I heard about new types of drugs being used with Type 1 diabetics, tips about when to take insulin prior to eating, about insulin pens that have 1/2 unit dosages and come with a memory, etc.  Most importantly, I learned that some of these new things weren't even that new- I just hadn't heard about them.  

I decided it was definitely time for a change.  I really think, if given all the information and tools possible, I can get my diabetes in better control than it has been the past few years.  I am ready to find a "team" who is eager to help me.

And I just may have found them.

I wrote about my first appointment a couple of weeks ago at Diabetes America in a previous blog post.

My previous 3 endocrinologists were all fine and they were what I needed at the time.  But now, I want more! I want cutting edge!  I want someone giving me suggestions! I want someone to partner up with me! Like  it says in the forward of Think Like a Pancreas by Gary Scheiner (which I'm reading now and loving it-- more on that in a future post for sure!), "The nice thing about teamwork is that you always have others on your side."


And ultimately, that is why I went looking for a new endocrinologist.

Friday, July 24, 2015

A Case for My Glucometer

Although I'm liking my new glucometer, the Accu-Chek Aviva Expert, I am hating the case it came in.  It's similar to all the stupid, boring, black cases my glucometers of the past have come in. But even slightly worse.

The elastic that is suppose to hold the test strips, as well as the one that holds the lancet device are just way too tight to easily fit them in and out for each use. Additionally annoying, the elastic that holds the glucometer in place covers the buttons I need when logging in my data information.  I'm pretty sure the designers of these lame cases are not users of the glucometer.  It's such a hassle to try dealing with the elastic straps, that I just let the strips and lancet device run free.  So, they tend to fall into my lap or onto the ground when I unzip the case. Not only that, but it's very hard to see it in my purse, also known as "the black hole". I often have a brief moment (or more) of panic wondering if I accidentally left my meter at home before finally finding it.
the elastic straps are useless and annoying.
After years and years and years of hating these lame cases, it finally occurred to me that I can use any freakin' case I want.  My friend gave me this adorable little hedgehog coin purse about a year ago.I've just been keeping extra guitar picks in it, and although I love it, it wasn't really put to much use.  UNTIL TODAY.
glucometer case- new and greatly improved
Now it's my brand new glucometer case!!! It's the perfect size, things don't fall out of it since the zipper is on the top, and it's very easy to find in my purse---Not just it's color, but also by it's feel.  So even if I'm in a dark place digging around for it, no problem! Yay!!! Problem solved.
all of my glucometer supplies are safe and sound in this case
Little things like this can make such a difference in the daily life of a diabetic.  If something this simple is bothering you, change it! Don't wait 20 years like I did.
The choice is so obvious, right?!





Thursday, July 23, 2015

Back To Diabetes Basics

I don't remember exactly when I was diagnosed with diabetes, or how old I was.  Which is maybe a little weird.  So many people remember the exact date they were diagnosed.  But no, that's not a detail I've held onto.  It was somewhere during my early to mid-twenties.

What I've have been remembering lately, is the beginning struggle I had, counting carbohydrates so that I would know how much insulin to take.  I would look at labels, but once I started having to add all the different foods and amounts together, it got a little confusing.  I remember trying to make some pasta dish one night, and I figured out the carbs in the pasta. But then I was trying to figure out the carbs in the tomato sauce. And just how much of the tomato sauce I would actually eat.  Then I had to figure out how many carbs were in the little piece of french bread I wanted to eat with it. It was just too much. (I know, it was too much carbs as well- but I was TWENTY-SOMETHING!!!)  I had had a long day at work and was just hangry (*hangry- hungry to the point of anger).  I didn't feel like adding all those numbers together to figure out how much insulin I needed to take. The dramatic actress in me threw the package of pasta across the kitchen and rigatoni went flying everywhere.  I burst into tears, and stormed out of the kitchen. Nice work.

But eventually, after many many meals of carb counting, it became so second nature that I knew how much insulin to take just by looking at food.  In a way, I sorta stopped carb counting.  Based on what my blood sugar was upon checking it, how active I was going to be after I ate, and the general amount of carbs I was eating, I almost intrinsically knew how much insulin to take. It didn't stress me out, and it worked for me.  Until it didn't.

Lately, as I've mentioned on the blog before, my blood sugars have gotten more and more erratic and I've decided I either need to give up all carbs completely (NO!!!!) or at least, start counting them meticulously.

Back to the basics.  I'm reading food labels, and I'm using all the carb counting phone apps like crazy. I'm currently taking 1 unit of insulin for every 20 carbs I eat.  I find myself wanting to eat less carbs the more I have to count them.  Sometimes, I even want to lie to my meter and tell it I'm only eating 30 carbs when I know I'm really eating 40.  It's weird.  It's like lying to your doctor. Why? What's the point and who am I trying to impress here?

So far, counting carbs hasn't really been enlightening or surprising.  I'm taking pretty much the same amounts of insulin I would have when I was using my other method. But it does having me being very conscious about what I put into my mouth.  And that, in itself, is surely a benefit.

Like I mentioned, I've been using different phone apps for carb counting.  There are just so many, and so far, each one I've tried has been a little annoying but also helpful.  Do you use one?  Do you have a favorite one to recommend?  Please share in the comment section below if you do!

Monday, July 20, 2015

I AM TYPE 1

When I was newly diagnosed and hospitalized with diabetes back in my early 20s, I knew absolutely nothing about the disease that would forever more, be mine. The extent of my knowledge about diabetes was largely based on what I had seen of Julia Roberts' character in Steel Magnolias.  I remember my main thought upon hearing my diagnosis was, "Oh my God!!! I'll never have babies!! And my life won't be long."

Like I said, I didn't know anything. I didn't even know there was a Type 1 and a Type 2 diabetes, and that they were actually totally different diseases.  Apparently, the nurses in the hospital weren't real clear on the facts of diabetes either.  I remember one nurse in particular saying to me, "Well, you don't look like you have diabetes! Maybe you just ate a little too much birthday cake."  I turned to my husband (who had recently had a birthday, and yes, I had been eating way too much of his cake because I was just starving-- and so thirsty!) and said, "Oh my God- Maybe she's right.  Maybe this isn't diabetes but just some weird reaction to something I've eaten.  This doctor is probably crazy."

No one in my family had ever had diabetes. I didn't really know anyone with diabetes.  And isn't Juvenile Diabetes something you get when you're a juvenile?  I was an adult in my 20s!

This was 20 years ago, and now 20 years later, there is still a lot of misunderstanding and confusion to the general public about my type of diabetes... Type 1. 

So, before we go any further along on this blog, please watch this excellent- and funny- video about the misconceptions about T1 Diabetes!


Tuesday, July 14, 2015

Diabetes America!- My First Appointment

Yesterday I went to my first appointment with Dr. Mora at Diabetes America!  (Which, by the way, I feel must me said with a cheerleader shout whenever I say it.)

I was so excited to be going to a new place, and to a new endocrinologist, to hopefully get some new ideas on wrangling in these roller coaster blood sugars I've been seeing on my Dexcom over the past year that I've been using it.

my dexcom meter. this is what a bad day looks like. less of this, please.
So excited, that when I stopped in at the restroom to wash my hands when I first arrived, I threw my glucometer in the toilet.

It was an accident.  Because the sink didn't have surrounding counter space, it seemed that the most logical and safe place to set down my meter was on the back of the toilet. I didn't realize there was a slight slope, just the perfect amount of slope, that as I turned to wash my hands, my glucometer fell right into the toilet water.  I tried drying it off and using it, but it had already drowned and was beyond saving.

I told the receptionist about my mishap, and she gave me a brand new meter, just like the one I tossed in their toilet.
old "one touch" glucometer that fell in the toilet/ new replacement glucometer
When it was time for my dreaded labwork, I took deep breaths, preparing to have blood taken from my vein.  That's how any endo I've ever been to in the past has done lab work.  And I hate it.  I've gotten faint plenty of times. I never gotten used to it, even though I've had it done way too many times to count.  But at Diabetes America! they just use a finger prick to get your A1c and cholesterol levels.  Annually, they do a more thorough blood panel which does require getting the blood from the vein, but not for this visit.  Yahoo! Already, I was in love with this place.

Also, the lab results were just about immediate, so by the time I met with the diabetic educator, we knew my results.  This makes a lot more sense than getting lab work results 3-5 days after my actual doctor appointment!  So we looked at not only my Dexcom results over the last week, but at my A1c as well.

After speaking with the educator, (which you have the option to do, or can forgo if you prefer) I met with Dr. Mora.  He had already been filled in on what I was wanting to address, medications I had asked about, and had an idea of my goals.

NovoPen Echo
Although I had asked about, and was hoping to try Farxiga or Invokana (drugs that to my understanding make you pee out excess sugar once your blood sugars go above 120 --please read more about it HERE because I'm not claiming that I got those facts exactly right!), Dr. Mora wants me to first just simply start using a new insulin pen that allows me to give shots in half unit increments due to my sensitivity to insulin.
Often, I have to opt to take a little too much, or a little too little insulin- but now, with the 1/2 unit options- POW!- this could really help me tighten up my control. Not only does the NovoPen Echo give me the ability to delivery in 1/2 unit increments, it also has a memory that tells me when I last took a shot, and how much I took.  Sometimes, even right after injecting insulin I'll think "Wait, how much did I just put in there?" So this added feature sure is nice. I trust the pen's memory better than my own.

He also suggested that I use a new glucometer.  It's one that not only give you a blood sugar reading, but also advises you on how much insulin to take,  based on how many carbs you tell it you're about to ingest. It's the Accu-Chek Aviva Expert.
accu-chek aviva expert
Obviously, this little calculation be done in my head, but I confessed to the diabetic educator that I don't really carb count, but instead use a very scientific method I call "Eye Balling".  I just sorta look at my meal and decide if I should take 1, 2, 3 or the occasional 4 units of insulin.  It usually works. When it doesn't I make a correction by either eating a little more, or taking a little more insulin.  I realize this method is slightly flawed and probably sounds crazy (or at the very least, lazy) to a medical team.  So, I think rather than trusting me, they want me to use a meter where they can actually see how much insulin I'm taking in relation to the amount of carbs I'm eating.

So for now, that's it.  A new meter that calculates my carb/insulin ratio, and a new pen that delivers 1/2 units of insulin. Hopefully, these two minor adjustments will make a difference and I'll have a little roller coaster that looks more like the "Mini-Mine Train" than the "Shock Wave".

an ideal day on the dexcom.  more of this, please.



Monday, July 13, 2015

A New Type 1 Diabetes Blog

Although I've had Type 1 Diabetes for around 20 years, and I've been a blogger for over 10 years, I'm only just now starting a blog specifically for sharing my trials and tribulations with diabetes, and hopefully connecting with other adult Type 1 diabetics.


Now that I'm in my mid-40s, my blood sugars have begun to challenge me in new ways that I'm very motivated to figure out.  I've had pretty tight control since my diagnosis, but gradually, my A1Cs have begun to creep up, and my last lab had me in a new range that I didn't like at all.

I have my first appointment with a brand new endo today. (I'll write a post soon about why I'm choosing to try out a new doctor.) I wanted to start my blog right now, at what feels like the beginning of a new journey.

So here goes!...