Saturday, January 27, 2018

New Diet Coke Flavors - a Review

Ok, I know this blog is supposed to be all about diabetes. But show me a Type 1 who isn't addicted in some form to their favorite Diet Soda Of Choice, and I'll show you a liar. *

I myself prefer Diet Dr. Pepper above Diet Coke. But I will take a nice cold DC any day of the week, and if you say "Is Diet Pepsi OK?" you will get a "No, please bring me some water." Which always makes the server die a little, because, you know, tips.**

So...Diet Coke has 4 new flavors. Ginger Lime, Zesty Blood Orange, Feisty Cherry and Twisted Mango.  To be fair, my store did not have the Mango one. So I will not include that in my review. I got 2 cans of each, one for me and one for my husband, who drinks more Diet Coke than I do. His opinions are included.

First up:

Ginger Lime

Expectation: I love lime in my DC. I love ginger. I will love this.

Reality: I cannot taste the lime - like at all. There is a stronger ginger flavor, and while I do love me some ginger, it tastes a bit like someone just added ginger ale to your Diet Coke. So actually, this would be great for sick days, when you need some ginger ale to settle your stomach, and diet ginger ale can be hard to find sometimes. But oh, how it tastes so good when you are throwing up or nauseated. (Don't forget to check for ketones in that situation, folks!) But this? Really really needs more lime. Pass.

Husband: I have a theory that ginger and lime are ALREADY in the flavor of DC. They had the correct balance, and here they just screwed it up. Do I have to finish this can?

Second in line:

Zesty Blood Orange

Expectation: I was looking forward to this one since I do like an orange slice in my DC. If you want to watch your server do a double take, ask for DC with orange instead of lemon or lime. (My brother in law taught me that)

Reality:  This does NOT taste like DC with an orange slice in it. This tastes like someone went to the fountain drink dispenser at your favorite restaurant and mixed the Diet Coke and the Fanta orange.  If you like Fanta orange, or you like the taste of mixed flavors that your 10 year old makes himself at the cool soda machine, you will like this drink. Again, I will pass.

Husband: Can I just drink regular Diet Coke? This is bad.

Third up:

Feisty Cherry

Expectation: I generally hate cherry sodas, so I don't see why this would be any better. I expect to hate it.

Reality: Yep. Blech. Bad.

Husband: Tastes like someone mixed Diet Coke with grape soda. Worst of the bunch.  The "feistiness" is terrible.


I am less excited to try the Mango one now. I will still try it, you know, in the interests of science, and my friend who tried them today says she'd drink it again, so maybe it's the best one of the bunch.  I kept googling to find out when these were going to hit my area, and no dates were ever given, but I did read that these were invented to appeal to La Croix drinkers.

So I bought some La Croix to try, and well, these are not going to appeal to La Croix drinkers. La Croix drinkers are the same people who order club soda and lime on airplanes. La Croix has very little flavor, but isn't bad once you add some sweetener. I myself added Truvia, feel free to dump the real sugar in, should your pancreas oblige.

I don't know WHY the good people at Diet Coke didn't call me to test their flavors. Or anyone in the Type 1 community, really. I make much better drinks at home, just with Torani syrups. Squeeze a lime, add some coconut syrup - yum. Splash of vanilla - divine. Or again, just squeeze a little bit of an orange into it. Delicious.

Am I giving up Diet Coke?  Not even a little bit. Am I going to buy these again?  Not even once.

The new can is cool, though.



*They're like people who say they aren't Journey fans. Liars, all of them. I grudgingly admit there might be a few out there, but Type 1's do take their diet soda seriously.

**Water is better for you. I know this. But it is not that tasty.

Saturday, January 20, 2018

Fun Facts, Gifs, and Collections

So..I've been dealing with Medtronic lately.

Yeah.

Fun fact #1: Medtronic gives a $500 credit if you send back your old pump within 60 days (90 days? 30 days? Some vague amount of days). It's a sneaky way of making sure you only have their equipment to deal with.


Fun fact #2: I did not send back my old pump. In fact, after a month of wearing the brick that is 670g, I put my Tandem T:slim back on. I couldn't do the Medtronic anymore. Too big. Too bulky. Too clicky.
Me every time I had to click another damn button.


Fun Fact #3: They charged my credit card $523 for my sensors, and as it turned out, it was covered by my insurance, and so I should have been charged bupkiss. (Does anyone say bupkiss anymore?) So - I owe them $500, they owe me $523.  I emailed my rep about this, and got crickets.

What most money conversations look like


Fun Fact #4: They started calling me to collect that $500. I would pick up the phone, and then get put on hold, and that just didn't fly with me. Well today they finally picked up after they called me (seriously, like, what?) and what followed was probably the greatest conversation I've ever had with a medical device company.

"Is this Heidi?"

Yes it is.

"Ok, let me pull up your account, oh it looks like....did you ever send back your old pump?"

No I did not.

"Oh, well that's what this is - you need to send that back honey, and that's why this went into billing."

"Yeah, I'm not going to do that. I am wearing it. I like it better.

(This blew her ever loving mind.)

Fun Fact #5 :I wish I were Anna Kendrick


"Wait, what? You like the old pump BETTER?"

Yes.

"Well, then what are you going to DO? This is considered a bill then. Do you want to set up a payment plan for this?"

No, I'm not paying it. You guys owe me money for the last shipment you sent out. If you refund me the $523, I'll pay the $500.

(In my head, I answered the 'what are you going to DO' question with "Sell the whole system on ebay" but I did not say that). (Nor will I do that.)

(Frantic typing)

"Are you talking about the shipment sent on 12/29?"

Yep, that's the one.

"We haven't received your insurance payment yet, you need to look again, and at where it says 'patient responsibility.' What does it say in that line? Does it say $523?"

It says $0.

"ohh.....When did you get that letter explaining that bill?"

It's online. I don't get letters - processed 1/4.

"Oh, well then yeah, you should be refunded then..once we get that insurance payment, we can process your payment and apply it to this pump. Let me see if you're on auto-ship, (no way in hell I'm on auto-ship) looks like you're not. Ok, that should do it."

Thank you.

So KUDOS to them for being able to apply the payment for one order to the bill for another order. So many companies would have to do the dance of refunding, then billing again, different systems, yada yada yada.  But ANTI-KUDOS to them for calling and putting me on hold, also for overcharging me by $523 in the first place, especially since I was quoted $300/something.

 Also, for all the clicking. You cannot turn off the clicking. And the stupid double A battery. And the stupid software that only works with IE.

But it was fun, just to be able to tell her 'Nope, not paying it.' "yep, you owe me money' "nope, not sending it back'.  There was no emotion attached, just me being in charge of the whole collections call.



Also, as to when I'm going to actually pull out the stuff they sent me and go into Auto Mode?  I have no answer to that question. Maybe never. Maybe tomorrow. I thought I'd give it the old college try, just like I did with Manual Mode, see what I think, but now I'm thinking, nope.

I would have to go to training with the trainer I dislike, (I answered her text about when I'm coming in with a solid "I'll let you know") and then deal with Medtronic for the rest of my life....ughhhh. The thought fills me with ANTI-JOY. Otherwise known as IRRATIONAL ANXIETY.



For now, I'm back on the old pump. Until it decides to die. And then??? Truthfully, I'll probably do whatever I can to stay with Tandem. Which will probably cost me money. Which is a bummer. And I might switch because of it, but not today.

NOT TODAY.





Friday, September 22, 2017

Thoughts about choice...

...and no, this is not an abortion post. Sorry to freak you out, there.

(Follow up on the last post.  A1C in Sep was 6.4. Done by the lab in Boston.  I now like the lab in Boston better than the lab here).

So. I've been pumping for about 4 years now. Apparently, in diabetes-land, this means your pump will now spontaneously explode and you will die quickly.  Because...THE WARRANTY IS UP!!! DANGER! DANGER!!!!

You have to be very careful that your pump doesn't turn into Walter White overnight.


Ugh. This has not been fun for me.  This is because I have United Health Care.  (UHC).

Some back story:

I have been using a t:slim pump, made by Tandem. Last May, UHC and Medtronic got in bed together and decided the sweet baby they would make would take the form of forcing everybody to use Medtronic pumps from here on out.  Tandem stock takes an immediate nose dive.

The Type 1 community went a little bananas went this got announced, and did lotsa tweeting and calling, (#mypumpmychoice) but as is often the case, tweeting and calling only results in a huge middle finger from the people who just don't give a flying turd what you think. (In this case, that would be Medtronic and UHC).

Takes on a whole new meaning when applied to companies.  Get it?  GET IT?


UHC's response was basically:  Most people use Medtronic anyway, so really, suck it up, snowflakes.

And we snowflakes wept a little. Because these companies are run by Weasel-bags.

End of backstory.

My warranty was up (AAAAGGHH!! EVERYBODY FREAK OUT!!!!) and the phone calls started.

"Hi, this is so-and-so from Tandem, and we would like to upgrade your pump."

"Fantastic. Let's do it. But it's going to be a fight, because UHC."

"Ok, we called UHC.  You're approved for out of network, which is not really approval at all, it basically means you will have to pay cash, and so to upgrade will cost you mucho denaro. Shall we proceed?"

"But I don't have mucho denaro.  Last time it only cost me little denaro. And I love your company. What can I do?"

"Unfortunately, not a whole lot. Let me know if you decide to give us all your money."

"k"

So then I get a prescription for a Medtronic pump.  And they call me and let me know they are going to send me the 670g, aka the latest and greatest, aka the only closed loop on the market, aka an artificial pancreas of sorts.

I should be happy. but I am not.  And do you know why I am not?  Because I didn't choose this, it was chosen for me.  I would not have chosen this pump.  I don't care that it's the first closed loop, I actually would prefer the second or third closed loop, let somebody else work out the kinks.  I don't buy the first time anything.  And you will pry the Dexcom out of my cold, dead hands. Plus why would I support Medtronic?  They're the devil.  They are everything that's wrong with drug companies and medical equipment companies. They are Weasel-bags.

After the initial phone call saying they got the scrip, and to let me know the sensors are probably going to be backordered, there was radio silence for weeks.

Finally, I called - "Hello?  Is this happening?"

"Um let me call you back."

"Hi. Yes, it's happening, I'm taking over for the person who was supposed to do this, and we're waiting for approval from your insurance."

"Um, well Tandem got "approval"in a day so this just feels like you didn't submit it yet. No way approval takes this long."

"Yes, well, we're just waiting."

THE NEXT DAY

"So we got approval, looks like you've met your in-network deductible, so this will cost you medium denaro,  and you'll get notified when it ships." (Feeding my theory that nobody did anything)

Crickets. For a month.  But I understand, backorders, etc etc.  Really Medtronic is completely overwhelmed at this point, because they submitted this thing for FDA approval, but didn't expect to actually get FDA approval, and there you go..panic mode, backorders, crickets, the whole shebang. (Does anybody say "the whole shebang" anymore?)

Finally, SHIPMENT!  And here it is.  This pic compares the two pumps.

T slim on the right. Medtronic on the left.

There is not something on my screen, I don't know what that is. Probably a ghost.


ISN'T IT MASSIVE?

My husband -  "This is really the latest and greatest in diabetes tech?"

"Yes."

"Is that a double A battery in there?"

"Yes. And it looks like I will be replacing that every few days."

"It's not a charging battery like your phone and your current pump?"

"No."

"So bulk double a batteries are now on the list?"

"I guess. We need to get the lithium ones, I hear those might last a full week."

I haven't told him yet that the software only works with Internet Explorer. He might just pass out, and we don't want that.

Plus, I need a new glucometer.  That UHC won't cover.  Why UHC will cover the pump but not the meter that goes with it is one of those great mysteries that go unsolved and will cost me more money.

(OK it's not a mystery.  UHC doesn't have the same contract with Bayer that they do with OneTouch.  The least they could have done in this deal is cover the meter, or make Medtronic be compatible with the one they like, but no, that would be asking too much.  TOO MUCH. BE GRATEFUL)

And today I get an email asking me to sign up for a training class.  Here's some options for times, it'll take 3 hours of your day in the middle of the week, not to mention an hour travel because you live in boony-land, (not their fault) oh, and please read this material before you come.  Which is ok, but the material is for the older version of this pump, because oh, they actually haven't finished the manual for the 670g yet.  But it's totally cool, they're pretty similar.



I don't want to go to this training.  I don't want to switch pumps.  Also, I can't even get the whole "closed loop" thing going, because the sensors for the CGM are on backorder until May, and oh, did I mention that Medtronic has 3 plants in Puerto Rico and I don't know if you know this, but Puerto Rico is pretty much underwater now, and has no power, because of all the death hurricanes and stuff, so...this is basically just another pump but heavier.

(Click here for ways to help Puerto Rico. Seriously.)

So yes, I'm mad.

Because we live in a time where we should be getting MORE options for diabetes, not less. I should be able to look at all the available pumps, decide which one would be right for me, and go with it, even if it isn't the latest and greatest. I can see if my numbers were crappy how they might step in, but they're not. This disease takes so much away from me already, it can at least give me options for treatment.  My options at this point are:

1. Pay about 5 times as much for the pump/sensor I want.
2. Go back to shots.
3. Use this pump, and support a company I hate and abandon two companies (Dexcom and Tandem) I love.
4. Try again to build my own loop, with OpenAPS.  It was too hard before but I just might be ready now. Screw all of you, because #wearenotwaiting.  Hmmm.
5. Something else I haven't thought of.  What is it?  Tell me.

This is not ideal.

And I know a lot of people LOVE this pump. Heck, maybe I'll get over myself and love it too. I will never love how I was forced to go on this pump or suffer financially. How my options were limited by a bunch of Weasel-bags. (I'm still ticked I'm using Humalog instead of Novolog.  I was willing to pay the difference but they stopped sending it to me.)

 I know the Medtronic employees I deal with are not at fault, and I try to keep that in mind as I deal with them, even though I am angry. But my anger means nothing.  Because you know what?     NOBODY CARES.

(Here I would insert a video of Lily Tomlin telling you "We don't care, We're the Phone Company, We Don't Have To", but I can't because it's copyrighted. So just watch it in your head).

The end.  Thanks for listening.










Friday, August 18, 2017

Adventures In A1C -ing

So, recently I had a doctor's appointment. (2 weeks ago, maybe?)

It was on a Thursday.  On Friday he called to tell me my lab results, and my A1C was 6.8.

And, not to be one of "those patients" but there was no effing way it was that high.  I couldn't believe it.  So I freaked out and spend lots of money on various A1C testing.  Let's follow my trail of crazy, shall we?



Friday - Went to Walgreens.  Bought an A1C now type test, Walgreens brand.  Result was wonky.  Turns out it was expired, and this is one of those things where expired ACTUALLY means "doesn't work." (Not always true in medicine, btw). But they didn't have any more.  Very nice people.

Went to CVS, bought the same thing.  Ran it. 6.1. NOW we're talking. Felt better.  Knew I couldn't call my doctor with a home test result, though.  Went on Amazon and ordered a whole bunch more, a different brand, the kind my friend recommended.

Saturday - went online to Sonora Quest, and ordered a patient lab of an A1C. Went into a lab in the back of a Safeway and got blood drawn. Picked up a couple things at the store too. Kicked myself for not remembering to do this Friday, because actual lab test - cheaper than home test, and doctor will accept it.

Can I just take a moment to say "shout out to patient ordered labs?"  It's so awesome that AZ does this. GO! Order tons of tests! Obsess over numbers you don't fully understand! Wondering if you have high cholesterol but don't have a Primary Care? Order the lab yourself! I love this whole concept. Then take them to your doctor and have it entered into your chart instead of going to the doc, have them run stuff, and then wait days for the result, and then have them have you come in for a second visit, blah blah blah....



Monday - A1C Now tests come from Amazon Prime.  Run one.  It says 6.4.  Lab tests (that I had drawn on Saturday!) came back and said 6.6.  It came with a lovely attachment about how I might have diabetes and I should probably go to the doctor. Thanks, man.  Appreciate it.

So now, within what is basically a weekend, my A1C is anywhere from 6.1 - 6.8, with, let's face it, the two most likely candidates being 6.6 and 6.8.  I figure I can't really call my doctor with a "ha! Your lab clearly screwed up!" with a 6.6 v 6.8.

I acknowledge I have been crazy and I take a step back.




Until today.

Today I look at the second CVS kit and the 10 A1C nows I have, and decide to run them both at the same time.  Literally, the results were 30 seconds apart.

Yeah. One says 6.8, and one says 6.3.  The only difference was which finger I drew the blood from.  So not only are these not that consistent with lab tests, they're not really consistent with each other.  But then, different lab tests aren't completely consistent with each other, either, based on my crazy experimenting. SO WHAT TO DO?

Probably just take a deep breath and carry on.  Boring.


Tuesday, July 25, 2017

What if?

Ok peeps.  I have things on my mind.

I've been thinking a lot about my involvement in the Faustman trial.  In fact, I word vomited about it all over my friends today at lunch. Sorry about that, guys.  ("Oh am I talking too loud?  Sometimes I get over excited.")

And this is what I'm ruminating about -

WHAT IF IT WORKS?

What if she actually does it, and cures me?  Or if it doesn't completely cure me, what if she gets me any pancreatic function back?  A little, maybe even a lot?  And not just for me?  For all y'all? (Let's pretend I'm Southern for a sec.)

How do you say "Thank you" for something like that?

Hey, thanks for giving me my life back and curing my chronic disease - here's some flowers and a gift card to P.F. Changs.  Do they have that restaurant in Boston?  Hope so!  Thanks!  TTFN.

Maybe a goofy card? I don't know.

I was talking to my sister about this, and she has kidney disease, and is facing a transplant down the road.  And she had the same question - how do you thank somebody for a kidney?  (Hey, ever thought about donating a kidney, we hear it doesn't really hurt that bad...)

And...I don't know.  I don't know the answer to this.  It's still early days in the trial. no results are in.  I can't really speak to my experience.

BUT YOU GUYS.  WHAT IF IT WORKS?

Feel free to donate.  Thanks for donating last time.  Here's a Thank You Card.  Feel free to check all 3 boxes, because you are that awesome.

P.S. If you think of another fund raiser I can do, let me know.

Friday, January 27, 2017

8 years.

Today is my 8 year diaversary.  I didn't even remember until Facebook reminded me. Anniversaries are weird things.  Sometimes it knocks me out and I can't stop reliving diagnosis, sometimes it's like "meh."  

What?  Just because I go practically an entire year without posting doesn't mean anything.  It's been quite the year.  And I am pretty much under a gag order when it comes to talking about my participation in the Faustman trial, so I can't tell you much, except that Boston is pretty cold most of the time.  Also, really far from Tucson. 

My primary care called and said I had to go back in since I haven't been in years. So I did, in which case the Nurse Practitioner pulled up my chart, and said "It looks like you've been seeing your endo regularly.  Look, you just got your eyes examined.  You're clearly seeing doctors. Why are you here?"

"Bureaucracy?  Insurance?"

"Ok then."

I actually have an endo appointment next week, so the Primary Care ran all the labs for me so it'll be nice to just discuss the results.

A1C was 6.6  I was THRILLED.  Downloading the Dex after Christmas showed an estimated of 8, so I had to kick the new year in the butt and really focus more.  I had been running high and having major spikes and pretty much doing the minimum to fix them. So I was glad to see the butt kicking I gave myself helped.  Also - A1C is truly heavily weighted by the last few weeks.  If this had shown my Christmas numbers....

I have decided the secret to diabetes control is pre-bolusing (which gives me major anxiety) and water.  So much water.  I hate water.  It is not delicious.  But it helps. 

I would prefer this to be Diet Dr. Pepper.


However, my urine (what?  I talk about pee a lot - diabetes, you know) showed elevated microalbumin.  (around 54 - they want it below 30) I am not sure exactly what that means except that my diabetes is affecting my kidneys.  I will have to discuss this with my endo.  Dr. Google says the treatment is blood pressure meds.  I have super low blood pressure. I'm worried that if I add an ace inhibitor,  I'll become the incredible fainting girl, and I really don't want to be passing out everywhere I go.  It doesn't sound fun.  So we'll see.


All other labs looked good.  She didn't run a lipid test, so that'll be run later.  Thyroid is good.  

See y'all in a year.  Peace out. 

Tuesday, February 16, 2016

MUST...BLOG...PHASE...2..AND YET..

OK, folks.

I'm IN!

I am a member of the Faustman Phase II trials.  I went there, I got screened, and I'm IN.

I am supremely happy about this.

Here's a picture of happiness.

Also, I love this song and this show.


I will say this, however -

I signed a paper that said I wouldn't talk too much about it on social media or blogs, etc. so I am very limited as to what I can say.

Of course I can tell my friends and family about it, but they want the internet presence to be limited, as as not to compromise the study in any way.

Which makes me a little sad, because I wanted to blog EVERY STINKING DETAIL, mostly so I can bore you all to death, but also REALLY mostly so I can remember it all.  But I can't. So this is what I will say.

Boston is cold.  But it has good Italian food.

I will be traveling there, often leaving at unheard of times in the morning, because it is far away.

I want the REAL DRUG.  GIMME. It's a double-blind, so we don't know what I will get, but I know what I want.

You can read about her research on Faustmanlab.org.  You can also donate money.

They're still recruiting, so if you want to join me in my coolness, shoot them an email.

I got to meet Dr. Faustman.   Here's a picture to prove it.


I should have put makeup on.

That's it!  Send good vibes that I get the DRUG.  I want the DRUG, peeps.

Studies,  They're fun.

(Also, I went to the endocrinologist a couple weeks ago.  Labs were good - a1c at 6.7 - LDL cholesterol down to 138. Thyroid still fine. Yay.)