DIabetes Blog Week Day 1: Diabetes and The Unexpected

Today is the first day of Diabetes Blog week, and my first time participating.  I haven't blogged on any regular basis so this will be a welcomed challenge.

Today’s prompt: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

When I think about the unexpected with diabetes, I feel like I can quickly tick off a ton of examples of how my diabetes had a mind of her own and did what she wanted, despite my best efforts and bringing every trick in my diabetes management toolbox, but still wasn't successful in taming the beast.

But I'd rather focus on the unexpected positives that it has brought me.

Sense of Purpose:
I was diagnosed with diabetes at the age of 2, and was fortunate to have gone to diabetes camp, Camp Nejeda.  As an adult, I have come to realize that there's not a lot of local support for adults with diabetes.  My mission of correcting this started about 6 years ago, with many false starts.  Over the last two years I have partnered with my local American Diabetes Association, and Camp Nejeda to create events/programs for this demographic.  My purpose, or mission is to expand these beyond Massachusetts and New Jersey. It's hard work, but I love it and can't wait to see where it goes.

Sense of Belonging
I feel like I always walked to the beat of a different drummer.  I have never been sure if it's because of my diabetes and knowing what I need to do and putting that first, or just how I'm wired.  It wasn't until I met other people with diabetes that I felt an instant connection with.  The people I met when I was 12 at diabetes camp are still some of my closest friends even though we don't get to see each other that often  The PWD  (people/persons with diabetes) that I have met as an adult, in person and online, I've had that same instant connection with, and I love it  The power of "me too" isn't to be taken lightly.

Sense of Being Supported
The DOC (diabetes online community) while we have greatly varying opinions on things, I know will have my back when I need them.  Friends and family are important to my mental and physical well being, but being able to share, vent, commiserate (what happened to that positiveness??) with is what often helps me the most.  Being able to message a friend stating "Ugh, BG dropped from 300 to 90 and I feel like crap" and they know exactly how you feel, is huge.  *Not to imply people without diabetes can't be supportive, they can. It's just different.*

So, while there are many things that stink about having diabetes, these unexpected positive things have been great.   There are so many great people that I've met, that if not for diabetes would never have crossed paths with.

When life hands you new health insurance, micromanage!

Changing health insurance and or pharmacy benefit manager can be easy, or it can be a tangled web of countless hours trying to get the right information. Rarely is it anything in between.

Having recently gone through this after being laid off from a job I've had for a while (if you know anyone who is hiring, let me know), I'll share with you how I managed to keep my wits about me, despite many hours of phone calls and wrong information at almost each step along the way.

Know what you need:
I may not know where my keys are half the time, and my desk is always a mess, but I am quite methodical when it comes to many things, especially getting what I need to manage my diabetes. 

I recommend starting by compiling a list of all of the medications and other related durable medical items you need.

• The pharmacy list should contain doses and quantity of medication needed.
• The durable medical (insulin pump supplies, CGM,etc) should include the manufacturer item number if you have it, this can help eliminate wrong orders. 
• Not only know what you need, know how soon you need it so you can escalate if need be.

Expect the unexpected:
This advice often drives me nuts, but it's true.  The things I thought would be an issue like CGM coverage weren't. The things I thought would be a non-issue, like approval for my strips with a prior authorization, have turned out to be a major pain in the neck.

Micromange!  
Follow up, keep an eye on progress if you can through pharmacy websites.  Check on everything, and inquire as you need.   

I learned today that despite asking my doctor's office 3x in email for Humalog insulin, they       submitted the prescription for Novolog.  I can use either, but this insurance's preferred insulin is Humalog. 

I also learned today that a prior authorization for my strips was submitted, but denied.  They told me that it would be approved if the meter I use is the only one my insulin pump communicates with, which is my situation.  I have no idea now what was submitted in the PA, but now that has to be followed up on.

Take notes:
I sometimes have trouble with this, and if you end up making a lot of calls and getting lots of information, most of which is wrong, it's helpful to try and plot it out. Who said what and when can be helpful, especially if you have to escalate.

Insulin pump supply saga...
I started the process by calling Cigna to find out what they cover, and how to obtain my insulin pump supplies and CGM.  I was happy to learn that it was all covered.  They said to call CareCentrix to order my durable medical.  Simple, right?  Ah, no.  If only.

• I called CareCentrix to start the process, but they instructed me to ask my doctor for a prescription for what I needed.  I questioned this as usually the third party submits the order, dr. fills it in and off it goes.  I called 2x to confirm this and each time received the same terse answer.  
• I called the doctor's office  and explained what was needed, and they never heard this so they kindly offered to call CareCentrix.
• My doctor's office called back a few minutes later and  said that CareCentrix told them that I should call Apria or McKesson, 3rd party distributors. The doctor's office suggested I called Apira as said they currently work with them, and not McKesson. 
• I called Apira, and to no surprise,  said they are not contracted to work with Cigna and they can't help.
• I called CareCentrix again, and  pleaded to the woman on the phone to help me. I explained the situation,  and pleaded with her to help me out.  With a few short keyboard strokes she told me that Medtronic is a preferred vendor and to call them.  She explained that CareCentirx is sort of a clearing house for the insurance company, they just confirm benefits.  
• I called Medtronic and within a few minutes I was set.  The person on the phone told me they have a dedicated team that works with Cinga, and I was set.
• I call my doctor's office back a few days later to make sure they got what they needed from Medtronic, and to no surprise nothing was sent.
• Another call placed to Medtronic, and it turns out there was a  valid prescription for what I needed. I asked the person to double check, as that's not what I was told on my prior call.

A few days later I received a call from Medtronic, and received an email that my pump supplies are on the way but my CGM sensors would be a few weeks.  I have to look into that again this coming week. Despite being the queen of follow up, there's only so much even I can take.

Long story short - micromanage,take notes, micromanage, and be sure you get what you need when you need it.  In these situations don't be afraid of being assertive and escalating!

Favorite Diabetes Things

A few of my favorite (diabetes) things:
There are many products on the market targeted specifically for people with diabetes.
Below are some of my favorite items I've come across over the years and use on a regular basis.  

AccuCheck FastClixNever in a million years would I have expected myself to list a lancing device as one of my favorite diabetes related things, but I do love it!  The FastClix features a drum containing 6 pre-loaded lancets, making it easy and hassle free to change lancet after each use.  Sharp lancet = less pain, less callouses. 

Gold Bond Ultimate Diabetics Dry Skin Relief

"Diabetics are prone to dry skin"  I'm not sure if that's medically accurate but I tried this product a few weeks ago and love it.  It absorbs quickly, isn't greasy and lasts for a few hours.  All things I want in hand lotion!

SpiBelt

I use my Diabetic SpiBlet for all of my workouts at the gym. Zumba, weight training, and everything in between.  With my insulin pump in the SpiBelt I don't worry about it falling and getting damaged.  It's also easy to move the belt around during my workout if I need to move it based on what I'm doing.  

PumpPeelz

PumpPeelz are decorations for your insulin pump, CGM and blood glucose meter, or as they say "Decorating Diabetes."  I have them on my meter, and my insulin pump.  Pictured here are my Medtronic Diabetes 630G insulin pump and Counter 2.4 meter, both wearing Pump Peelz. 

GlucoLift 

Glucose tables are another one of those things I never thought I'd add to a list of favorite things, but these are better than any others I've tired. - and I've tried a lot including those orange white tabs from BD back in the 90s.These are all natural, and not as chalky as others on the market, and when you open the bottle there's no puff of powder!  

My favorite are the wild berry.  

*I purchased all of these items on my own, there is no sponsorship involved with this post.  

I Wasn't Low Last Night - it was the cat

I love my tabby cat, Shelby. But she thinks night time is play time.

Shelby jumps on and off me all night.  She knocks things off the night table, and she also rubs the corner of the night table.  All.  Night.  But I wouldn't have it any other way even though I'm tired most days.

My husband is on juice box duty over night.  Not that I can't get them myself, but I feel better nudging him and asking for one, so he has an awareness that I'm low.

Last night Shelby was extra active in her pursuit of knocking everything over.  At one point I said, a bit too loudly, "Shelby, stop!!"  and within seconds my husband gave me a juice box.  Or rather, placed it on my back.  At some point I realized it was there and put it aside.

This morning he asked if I was ok, after the overnight low (sometimes my blood sugar is higher in the morning after an overnight low), and I said I wasn't low.
C: "Didn't  I give you a juice box?"
Me: "Yes, but I wasn't low. I was yelling at Shelby."
C: "Oh, that is why you didn't immediately take it."
C:  "Maybe "Shelby stop" sounds a lot like "I need a juice box?"

  Did I mentioned this was a WhatsApp chat, which made it even funnier, at least to us.

Is Diabetes a Scapegoat?

Some days I want to scream "not everything I'm feeling is related to diabetes!!!" 

 and before you ask, no, my blood sugar isn't low 

Does diabetes impact how I feel? 

Often.

Does diabetes impact my moods?

Often. 

Does every headache have to mean low or high blood sugar?
No.

Does being very thirsty mean I have high blood sugar?

Sometimes.

This is along the sames lines as doctors saying "diabetics are prone to..."  when they have no explanation for why you are sick.  

Are we giving diabetes too much credit?

There are a lot of twists and turns and variables and can impact just about everything.  
But please, do not assume  if I'm hungry, grumpy, tired, agitated that "its the diabetes."  Sometimes it is, and sometimes it isn't.  I do check my blood sugar, and wear a CGM and 99% of the time in tune with what's going on. 

Goodbye MTM

I cried when I learned that Mary Tyler Moore passed away today.  

I'm not normally the type to cry with the news of someone famous passing, but this time I did, and I've had a heavy heart all day.  

When you meet, or read about another person with type 1 diabetes you feel an instant kinship.  You know at some point you've dealt with the same low blood sugar, high blood sugar, silly thing people say, issues with health care professionals, and so on, and I felt that connection with Mary Tyler Moore despite having never met her.  I watched her on tv, heard her speak, and read her book  Growing Up Again.

I cried for the battle she fought.

I cried for the others with T1D who lost their fight.

I cried for the loss of life.

And then I pulled myself together and looked into how else I can get involved with the diabetes community and make a difference today, tomorrow, and for the future.

Goodnight MTM.

More than my A1C

I know I am more than my A1C.  

I know that my total health is important, and that trying to keep highs and lows at a minimum is important.  

But today's A1C result was 5.9 and I have to say I am damn  proud of that number. 

5.9 is my lowest A1C in my 40 something year career with type 1 diabetes.
My endocrinologist  commented that my diabetes is in "tight control" which is also something I haven't heard before.

My goal was not to get my A1C below 6.  My goal was and remains  to keep it between 6-6.5 where it's been for a number of years, thanks to my continuous glucose monitor.

For the most part I have always done a pre-bolus.  I've figured out how to use different bolus options for pizza and Chinese, which I wrote about a few weeks ago:   You Can't Eat That, or Can You?  The only thing I changed in the last few months has been when my CGM alerts on high.  I set that to 180 so if I do need to take a correction bolus, it can get going before my blood sugar gets too high for my liking.  
So, while I know I am more than my A1C, I still celebrate this small victory! #itsthelittlethings