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.)


Wednesday, August 26, 2015

For those of you who keep asking...

...what's the deal with the Boston thing?  What's up with your trial?  How's it going with Faustman?

Here we go.

I sort of know what the deal is.  Kinda.

I received an email ("Dear Trial Participant") (I was really happy to see that greeting) with details and such.  However, the main detail, as to when I will start, is not yet set in stone.

They are beginning the "screening visits" in October.  They do have 150 people to screen (at least!) so I have no idea if I will be going out in October or if it will be later.  They also included a schedule of what the visits will be after that, should I pass the screen.

I really really want to pass the screen.

REALLY.

I have to have my c-peptide at a certain level to do it, so let's all keep our fingers crossed for that.  Prayers, chants, dances, whatever you got - I NEED TO PASS THE SCREEN.

After I pass the screening visit (see what I did there?) I will have to spend some time in Boston, in the winter, during a crazy El Nino year.  That should be fun.  Hopefully, the travel times aren't during crazy storms or anything.

I went and got TSA pre checked to make my travel experience better.

I will need a coat.  A good one.


And here's a cool video about her and this trial. It's long, so settle in, but she is AWESOME and I'm excited.  (2000 emails a week!  WHAT?! And I'm on the short list? SO EXCITING.)






Sunday, July 19, 2015

Whiny, Self-Indulgent, First World Post About Clothes

You can't say I didn't warn you in the title.

So, here's the deal.

I hate everything in my closet.

I didn't used to.  Well, scratch that.  I DID used to.  Then I went out with Alicia from chiconashoestring, and I learned how to dress for my body type, how to shop, and my world was turned upside down.  It was amazing.  I highly recommend her.  I won't go into everything, but she taught me a lot, and a light bulb was turned on, and I thought that light would go on burning, and this was one area of my life I had finally figured out.  It's good to have one area figured out, you know?

Suddenly I liked what was in my closet.  I liked shopping.  I could walk into a store and instantly know what would work on me and why. I could grab virtually anything in my closet and feel comfortable and put together.  I was living the dream.  LIVING THE DREAM, I tell you.

So why am I back to the nightmare now?  Why do I walk into my (newly done, beautiful) closet and just sigh as I stare at the organized hangers?  I am not sure, but I have a theory.

It's all about fit.

That was one thing Alicia taught me, and taught me well.  The main reason I didn't like my clothes were because they weren't fitting me well, and not doing anything for my figure.  They were all mostly too big, too boxy, or just wrong for my body type.

So out they went.  And shopping became a joy, and I finally understood why women liked it.  I lived the dream for years.

Now I have gained about five pounds.  I am not complaining about this, I probably needed to gain them, and this is NOT a post about "oh, me, I'm so fat now, how will I ever 'lose the weight?'"  NO.  That's not what's happening here.  I am not heavy, and the five pounds don't really bother me, and I have no plans to lose them.

EXCEPT - they make it so my clothes don't fit anymore.  And THAT's what I don't like about them.  The pants are just a little too tight.  The shirts tug in places they didn't used to, "uniboob" appears every now and again. The skirt shows a slight bulge. And it's annoying.  So I pull on a favorite outfit and tug and pull, and sigh.

I now see the allure of wearing yoga pants every day.  They fit no matter what.  My boss won't go for it.  I know - I've asked him.

I have a (slightly) new body type, and I don't know how to shop for it.

Also -  I have had these clothes too long.

You know the theory of how you're only supposed to keep things that 'spark joy?'  That a few pieces that you love are far better than lots that you hate?  I am a firm believer in that - buying something because it was two bucks at a thrift store that you never wear is not doing you any favors. So I have tried to keep it to a few things I really love.

However, I am getting tired of these things.  (Except the good jeans, I could wear those every day until I die.  Again, my boss is not a fan.) They 'sparked joy' for a long time, now they're just the 'same old - same old' plus now they fit funny and so I am tempted to throw everything from Target into the cart just to finally have something different.  And so I do. Then I don't like what I just bought.  So my closet becomes a mish mash of old "joyful" things that don't quite fit anymore and new "possibly trendy but do I really like them" things that don't really fit well either because they were bought on a whim. It's not a great mix.

Let's also not forget that my taste runs to old lady. I've always been a tad sensitive to it.  I'll grab something that I think is cute and have to ask my friends "Is this old lady?"  And  you know, sometimes I get the nod.  You know the one.  The "I hate to be nodding but it's for your own good" nod.  The one that says "step away from that neckline".  But....why is it in this section of the store if it's old lady?  Just...Step away.  Don't pick it up again.  We'll pretend you didn't like that.

Nothing like having your daughter inform you that you look like a Grandma and then have all your facebook friends say - yeah, maybe.  I don't know how to get out of my old lady rut.  Maybe I just have to say - I'm an old lady.  Deal with it.

And since I can't afford to run out and replace everything I own, and am not even sure what I like anymore, I don't really do anything about it.  Also, I can't ask Alicia because I don't live in Utah anymore.  I  just sigh and tug and whine.  I have friends come over and go through my closet to convince me everything in there isn't heinous. That worked for about a week.  But there are days when I wouldn't be sad if a small house fire destroyed all my clothes, and I had to get new ones.  Of course, I wouldn't know which new ones to buy.  I don't know which stores to go to anymore. They'd all be way too young or way too old for me, nor would they fit me correctly.  I need a whole new tutorial on what my body looks like now, and better yet, what it will look like in the future.  I'm not exactly "youthening" you know.

This, my friends, is the definition of first world problems.  I know it.  But you know 'we do get judged and judgment matters."  (Did you know that women need more sleep?  I love that) Still, I think I may have to go donate to a third world country just to make up for the guilt of whining about clothes.

Also, diabetes sucks.

The end.