Things I Know

THINGS I KNOW

1. Sometimes you get sick and you don't get better.

2. People that have always gotten better after getting sick do not fully understand this.

3. We live in a world where you have to depend on other people. You have to trust that the people that make your medicine, and your supplies, can get them to you. You have to trust that people around you will help if you have an emergency. You have to trust that machine you are attached to will work. Which means, You are absolutely, 100 percent incapable of "standing on your own 2 feet" all the time. This....sucks.

And it means....

This is crap. Ignore it.

If you’re reading this, you’re wasting your Tim

4. Your choices aren't everything. This is hard to accept. Your choices are important as hell. They are. Make them carefully and use them wisely. But sometimes other people's choices are important too and they affect your life greatly. Sometimes life just happens. Take responsibility, yes, but learn to accept what you can and cannot take responsibility for.


5. In an apocalypse, I used to think I'd be OK with dying first. Turns out, not so much. I would like as many people to survive as possible.

Hopefully not yet

6. You are not invincible. It will bother you when people act like they are invincible. You want them to lose their sense of invincibility, and yet you don't, because wouldn't it be nice to feel that?

7. Sickness doesn't care who you are. It is not vindictive, nor can it be coaxed into being forgiving. It just....IS. And it doesn't care if you're broke, if you're wealthy,  if you have to be somewhere, or if you are tired of dealing with it. Because it's not your pet. It's disease.


There are many many things I do not know. There are many many things I thought I knew that I no longer believe. It's part of being human. I will learn things, I will forget things, I will change my mind about things. We all will. But I will fight against some things. I will stand up when I have to.

Because there are some things that just always will be true, no matter what other people say or do. There are some things you cannot set aside with "agree to disagree".

 Spin some things however you want, but at the end of the day, it means "Saint Diego"

https://www.youtube.com/watch?v=8AIwaSD9Sco

(Bill Gates isn't trying to poison you and essential oils don't cure diabetes)

Ramblings

When I was 30, I had 3 medical things happen all at once:

I had minor surgery on my thyroid to remove a cyst. I had Lasik surgery on my eyes, and I broke my right wrist.

(In fact, I often wonder if those 3 events all in the span of a few months is what triggered the beginning of the autoimmune attack - I was diagnosed 3 years later. But I will never know for sure.)

Of those 3 things, the breaking of the wrist was, BY FAR, the worst. It was incredibly painful for weeks, and I had a cast on my dominant arm. I had a 2-year-old at the time, and changing diapers was beyond me. How do you hold a squirming kid and change a poopy with one hand? I couldn't blow my hair dry. I couldn't get dressed easily. But you know what I really couldn't do?

I couldn't WASH MY HANDS.

Not being able to get my cast wet made hand washing this weird exercise in "what is the sound of one hand clapping" type nonsense. I longed for the day when I could indulge in the luxury of having 2 hands go under running warm water, the soap bubbling up nicely, the rubbing of both hands together. I would seriously fantasize about it. (but not in a gross way, come on people)

And then, of course, eventually that day came when I could wash my hands again. It was GLORIOUS.

It's been over a decade, and I still sigh with gratitude when I can put both hands underwater and really wash them both. It's still a luxury. And as you can imagine, I've been washing my hands a lot lately.

When this is over, I wonder what will be a luxury that wasn't before.

Will it always bring a spark of joy to go into a restaurant? To wait in a line and not wonder about the health of the person next to you? To watch a movie in an actual theater? Maybe every time I get my hair cut I will be astonished at the wonder of it all. Who am I kidding, I already do that. Hair people are magicians.

And the quarantine is getting to people. As expected, the backlash is beginning. "This is government overreach" "This is overhyped" "We can't believe the reports" "20k people would have died anyway" "They're lying about the numbers" "Hospitals are empty - I see the parking lots"

These are all completely normal responses to a completely abnormal situation. I just hope it doesn't lead to people breaking quarantine before they should because I don't want to read them tweeting about the death of their loved ones. Seriously my Twitter has way too many people mourning and it is HARD.

I don't really have a point here I guess.

Except that I really love washing my hands.

BCG in the Time of Covid

*Obligatory - wow I haven't posted in a while etc etc*

So as you all know, I am in the BCG Trial run by Dr. Denise Faustman to see if the vaccine can help Type 1 Diabetes. The trial is currently in Phase 2. I cannot publicly discuss my results or lack thereof, so don't ask. Thanks.

I had my first shot in March 2016.

In March 2020, I was to head back for my last shot. (I think it's my last? Hard to keep track at this point) I was supposed to have a follow up at the end of April.

But, as you ALSO all know, we're in the middle of an effing pandemic and traveling around the country right now is not advised. I am HUGE proponent of STAY HOME and I've been yelling at people to do so on a regular basis and I think I've annoyed everybody with it but that's OK. I mean, hopefully it's OK. No way to know, really.

I canceled my March visit. The lab understood. They are remaining open, as they are "essential" and told me they would change my April follow up to be a shot visit instead of just a blood draw. Seriously these people are great to work with.

I haven't canceled that yet, but it is very very likely that I will. I don't see this wrapping up in a few weeks.

The lab is willing to work with me to reschedule and I likely won't be dropped from the study, so that is all good.

The BCG vaccine is hitting the news, though, with possible evidence that it can offer some protection against the dreaded Covid-19

New York Times

Science Mag

As with most things concerning the Covid, everything is new and up in the air, but if this can help protect health care workers, and others that are high risk, and me, that would be amazing.

So I would like to get the shot, but I would also like to not travel on 2 airplanes, take public transportation, spend the night in a motel, go to the lab, and then repeat the process to get home.

I have a mask, and lots of soap, but still, I need transporter technology, even though my brother is convinced that it is murder. He feels strongly about Star Trek tech. (or he used to, he may not have opinions anymore, it's not something we discuss often)

Right now I'm leaning HEAVILY towards canceling/postponing. Like, 98 percent.

If I could get an antibody test that would show if I've had it, I would feel a lot better about traveling. I'm working on it, but those odds of that happening are low, if nothing changes. But, if nothing else, things are changing rapidly right now, so who knows.

And is it possible I've had it? It is. I coughed and coughed for 2+ weeks after getting home from Disney World, but I never really had a high fever (I got to 99) or muscle aches, or fatigue. Just a cough. I mean, the cough sucked, it was gnarly, but I have a pulse ox, I was never in danger, and honestly I consulted nobody about it because I would be told to just isolate at home and come in if it got worse, which I was already doing. And tests are few and far between.

Anyway, that's all. If BCG could protect against Covid-19, that would be amazing. Then you could all get shots with me, and we could compare arms. Wouldn't that be fun?

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.

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.

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.

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.