Friday, January 31, 2014

Of Randomness and Roses


  • 5 Year Diaversary was a couple of days ago.  What with the fainting and what-not, I totally forgot about it.  Celebrated with a bag of mint M&M's (in honor of my newly diagnosed self who thought she'd never eat one) and a large Diet Dr. Pepper.  Got a MAJOR stomach ache.  Apparently I am not used to sitting and chowing a bag of candy, haven't done that for oh, about 5 years. 
  • 5 years is a big deal.  I should have done something more, like last year.  But, meh.  My kids were super confused about the candy, though.  "You're NOT low?  You're just eating candy?  Wait, you're low, right?"  
  • New CGM came today!!! Currently in its 2 hour calibration period.  I am super impatient, what with the 2 weeks without data, and the crappy consequences of such.  I haunted the door until the UPS guy came.  I even opened the door for the Jehovah's Witnesses, who taught me about death.  All I kept thinking is that they weren't UPS.  Dang.
  • Note to self:  Get a new transmitter battery in 6 months.  I do not want to do this again.  Can Siri remind me?   She's pretty useless normally.  Hopefully by then I'll have a new phone anyway, and it'll have an android operating system.  Ah....android.  (On a side note, does anyone else think it's bizarre that we spend tons of money on phones that are designed to break every 2 years?  Anyone?  No?  Everybody's OK with it?  OK then.) 

Speaking of Money.....

The annual Spare A Rose Campaign is upon us.  The concept is, that for the cost of Valentine's roses (or a single rose), you can pay for a child's diabetes supplies, thereby saving a life. 

Fundraisers that begin with the phrase "For the price of (blank) you can do (blank)" always make me titchy.  "For the cost of a new pair of shoes or a dinner out"...just simply makes me want to buy a new pair of shoes and then go out to eat afterwards. I have my shoe budget, my dinner budget, and my charitable giving budget, and who are YOU to tell me where to spend my money? 

I may have a problem. But it always does rub me the wrong way.  You?  No?  You are clearly a better person than I am.  I'm glad we're friends.

No matter how it's phrased,  this is something I care about deeply.  When I got diagnosed, I asked the nurse in the hospital what people in Africa do, who don't have food, or insulin, and she just shrugged and said "They die.  Same as if they get AIDS."  Awesome.  They die.  OK then.

Death rate in Haiti for Type 1's is 80%.  EIGHTY PERCENT.  That's just criminal.

So I will go ahead and ask you to donate, but instead of telling you which budget to take it out of,  I will simply say "$5 will pay for a month's worth of supplies for a child. And that's groovy."  

(Apropos of nothing, I love white roses.  LOVE THEM.  I was proposed to with them, they were all over my wedding, and they are forever my favorite flower.  Please put them on my coffin.  But not today, because I'm not dead yet.)

I don't care where you had that $5 earmarked, if it was for roses, (maybe roses cost more where you live)  or for you to stare at lovingly because you love to stare at money (similar to my 10 year old, so no judgment).  Maybe you were saving up for a new phone, because hey, your 18 month old phone is clearly a dinosaur.  Maybe you don't budget every little dollar that comes in, and $5 isn't going to break you.  Maybe I should stop talking.

You can print out a "certificate of awesome" telling your loved one where your rose money went, so that's kind of fun.  Make him/her feel guilty about wanting flowers instead.  That's always good for relationships.  Show them that YOU are the better person.  Chocolate?  No way, baby.  LIFE.

Also, why don't my supplies cost $5 a month?  

To sum up:

Go send money.  Do it in the name of whatever you want.  Roses are a good one, though.
I wish my supplies were cheaper.
I may have issues.  
       








Monday, January 27, 2014

Party with the D

Today is Monday.  Let's talk about this weekend.

Where to start....where to start....

Let's start with my uncle, who was a fabulous man, and loved to say things like "I feel like Elizabeth Taylor's 7th husband - I know what to do, I just don't know how to make it interesting."  A man who loved people, family, and God, a man who made you feel like the most important person in the room just by talking to you.  He cared about everybody.  A LOT.

He passed away last week, succumbing to Parkinson's and Multiple Myeloma,  and so this weekend my husband and I headed to the yonder freaky regions of Los Angeles to attend his memorial service.  It was rough, but a lot of family was there, and it was good to see everybody.

And diabetes didn't let me forget that it was part of my life, even though, seriously?  This weekend would be the perfect weekend for it to take the back burner, thank you very much.

To catch up, transmitter died.  It has now been 10 days without a CGM.  This has been a party.

(In some good news, the insurance is paying for it, and once they found that out, the distributor emailed me to see if I wanted one.  To SEE if I WANTED ONE, and if so, what color?  To which the answers are yes, and black.)

And this weekend, we headed out Thursday to make the 8 hour drive to Los Angeles.  Thursday morning, without the benefit of knowing when at night I went high, (*fell asleep in the 140s)  I woke up in the 350s.  Like I say, party.  So I corrected and ran some errands, and by the time I got home, I was in the 50s.  It was SO AWESOME.

A CGM would have prevented this, waking me up and all.  I often go high at night, but not every night, so I can't really program my pump accordingly.

But it is what it is.  We took off that afternoon, and without incident, arrived that night at my sister's.  Fell asleep in the 160s, with a correction bolus "on board."

Friday morning, again, I awoke in the 330s, or the 380s, depending on which fingerstick you believe.  Either way, WAY TOO HIGH.  Bolused at 9:30.

So I correct, eat a high protein breakfast, with some potatoes thrown in because they are delicious, and we went to the family graveside service.  In the car, approx 2.5 hours after my bolus, around noon, I check again. 257.  So, this is good, I am dropping.

You think you see where this is going, don't you?  And yet...not quite.

The service was on  a small hill in the cemetery, not far from the car. There were a few chairs set up, and many people were standing in order to allow the older generation to sit.

I stood.  For about 2 minutes.

The dizzies were getting me, and so I sat.  It is now 1:00, and I feel terrible, so I check my sugars.  148.   Huh.. I'm way down from this morning, but not in any kind of danger at all, not like the day before.  The dizzies go away.  I enjoy the service, as much as one can.

Afterwards, I try to go talk to an uncle I haven't seen in a while, but I simply could not make it back to the car.  Standing up was not good.  Walking was not good.  I'm leaning hard on my husband's arm, swaying and wishing the dizziness would go away so I could, you know, stand upright and walk to the car. Seeing would be good, too, but all these dots are in the way. I eat a Starburst, (which my husband had to open for me) even though I know I'm not hypo, just in case. Midway down the hill, (keep in mind this is a small hill) I have to lie down, because this just isn't happening.  I lie there, clammy hands, sweating, SUPER dizzy, and they check my sugars again.  128. At this point my family has formed a small circle around me.

It was kind of embarrassing actually.  We were all there to celebrate Howard's life, and here I am lying on the ground.

 A cousin who is training to be an EMT kept asking if I was OK.  (He did ask me later if I had any insulin tabs, and I told him those don't exist, he was probably thinking of glucose tabs. It's OK, he's still in classes). I have an uncle who is a doctor and he was helping me out.  He said it was probably just that my blood pressure had dropped, and I needed to lie there until it equalized. I keep trying to get up, but no, the nice grass is better.  My speech got slurred, (apparently) and my sisters swear there "was a moment" where my eyes rolled up and I looked out of control of my body.  But a short one, they swear.

It was NOT a party.  

Eventually I made it back to the car and to lunch.  Sugars were 118 pre meal.  All that terrible-ness, and I never got below 100.

Did I faint?  Did I seize?  Was it diabetic shock from dropping too fast? Dehydration from the long car ride and the high sugars?  Was it even diabetes related at all?

Who the hell knows?

You?  Do you know?  Because if you do, that would be great.

Every night since then, I have set my alarm for 2 am to check my sugars.  And yes, every night I have been just over 200, but with a nice little bolus, I wake up just fine.

I can't wait for my new CGM to arrive.  It will hopefully make for fewer embarrassing moments and less flailing.  Less flailing would be good.

Saturday, January 18, 2014

Shenanigans!

Things have been crazy, diabetes wise, this week, and it's not even my blood sugars that are doing it

It's the robot parts.  All the robot parts have conspired against me.  My pancreas is mad that something else is doing its job, even though it can't be bothered, really.  So it's kicking and screaming.  I'm sure you know someone like that?  Won't work, but bitter if someone else tries to?  I think it's an insecurity issue, and all my pancreas needs is a little therapy.

First of all, late Tuesday night, technically 2:52 Wednesday morning, my Dexcom decided to alert.

Not high. Not low.  No, the transmitter battery is dying.  I need a new battery.

Blatantly stolen from the Dexcom website


 It decides that ALMOST 3 a.m. is the perfect time to tell me this.

So Wednesday a.m. I dig through my email, because I know I've saved one from the distributor that sends me all things pump and Dex related, and ah, yes, there it is.  The one that tells me if I ever see this alert, to RUN FOR MY LIFE, because the DEX WILL KILL ME.

Or...to call them stat, because I have a week left before this thing dies completely.

So I call them.  They refer me to equipment specialists.  They tell me if nobody contacts me in the next couple of days, to call them back. I sit and wait.  (This company has always been very nice to me, but it does business like it's 1999 or something, which is when I worked in customer service.  You can't check on the status of anything online, you must call them for everything.  I actually think it's probably HIPAA related, and that everything medical related is consistently 10-15 years behind the times.)

And for the next 3 nights, the SAME ALERT  pops up, at exactly the SAME TIME.

"HEY!  HEIDI!  IT'S 2:52 A.M.!  DID YOU KNOW YOU NEED A NEW TRANSMITTER?"

It's not annoying at all.  I mean, diabetes doesn't keep me awake enough, I need a new alarm that orders me to call people at 3 a.m.

Friday I call them back.  They say it's "pending benefits" which means they are trying to get my insurance to pay for it. "But don't worry.  You have until Wednesday before you'll need a new one.  We'll get this out to you in time".

 Let me save you some time and just say "they ain't gonna pay" because it is January and my deductible isn't met yet.  But I have a sneaking suspicion this'll do the job, and come February 1st, that deductible is nicely met.  Which means I will have to dish out a pretty penny for this transmitter.  A VERY pretty penny.

From Doodle Du Jour
Have I mentioned the pump part yet?  No?  Well, here it is in a nutshell.  Whenever I go really high, and rage bolusing isn't working, I pull the infusion set and replace it.  And I was recently on a very happy making vacation, (which is a completely different blog post altogether, prepping for and navigating that) and it was on a lovely boat, and there was a lot of food, and a lot of shot in the dark boluses, and well, more than a few infusion sets got pulled when they were perfectly fine.

Traveling light is a thing of the past.

Which leads to..I ran out of infusion sets before my auto refill showed up.  (It was shipped on Wednesday, though, and seriously, should be here!) And I haven't been pumping long enough to hoard stuff.  (It'll happen, though, no worries).  And this last one I had been wearing for a week and today it finally said "ENOUGH!"  and pulled out.  It was getting super itchy anyway.

And today, being Saturday, is the day the transmitter decided its lifespan was over, and the only reading I could get from Dexcom was "out of range".  When the receiver is in my pocket.  For hours.

A week, my donkey.

So there I am, no Dex, no pump really, and so I do the only thing there is TO DO.

I call another Type 1.  Well, technically his mom, who is my friend, and I beg a couple of infusion sets off of her.

She comes through like a champ, and even though I couldn't successfully break into her house to get them, she drove over an hour out of her way to get them to me, because SHE ROCKS.

She gets them to me as I am driving to a soccer game, and I give no thought to what random soccer moms think of me stabbing my stomach with this weird thing, I am GETTING THAT PUMP CONNECTED.

(This post has a lot of caps.  My apologies)

I set the basal at 50% for a couple of hours, because I took a few units of Levemir to cover those hours of no basal, and I didn't want to go low, especially without the added security of the Dex arrows to watch.

I get connected, sit down, take a deep breath, a long drag of Diet Dr. Pepper, and pull out my monitor to test my sugars, with the plan of testing every half hour or so, just to see where I'm headed with the different things going on today.

And behold!  I am out of test strips.  Pull out my purse, and of course! The extras in my purse are for the old mini, not the new Verio I've been using now, in anticipation of switching to the Sync.  I am now officially stuck for the next 3 hours with no way to test my sugars, no dexcom to rely on, and a wonky basal schedule.  Perfect.

Shenanigans.




P.S.  I was 180 mg/dl when I got home.  Not too shabby for the day I've had, really.

P.P.S.  This is really why we need a biological cure.  Devices are not foolproof.  Also, it's exhausting, being tied to stuff that your life depends on 24/7.  EXHAUSTING.

Thursday, January 9, 2014

Picard tells you what....random thoughts.

1.  I recently switched meters, from the OneTouch Mini to the OneTouch Verio IQ  They sent me one with my T Slim, and it has a *light* (brilliant! ha ha) and so at my next doc appt, I asked him to switch strips, seeing as how my prescription was expiring anyway.

The light is great.  However, it seems to vary greatly from fingerstick to fingerstick, and it's far more "off "  with Dex than the other meter. Like this morning, Dex says 76.  Fingerstick says 151.  Hmm. So I do it again, and this time it's 127.  Being off by a factor of more than 20 points is not unusual, and it drives me nuts.  Sometimes it says 240, than 218 the second time.  I pull out my old meter, and it's 189.  I'm supposed to make life or death decisions based on this?

Meter accuracy.  Drives me beyond crazy.




2. Last a1c was 7%.  This is not happy making, but I will not beat myself up over it.  It was just weird because I expected around 6.5%.  And when things are not what I expect, GRRRRRRR.  I know 7% is "fine" and all, but it's the highest I've seen, and my last one was 6.4, and yada yada yada.



3. When I see a 300 now, I don't freak out.  I should freak out, right?  I still treat it, I'm not that crazy. It's kind of scary that I'm more comfortable with terrible numbers.  It's also comforting, because you're going to get bad numbers, and freaking out is exhausting.  Still..  300 is BAD.  I see it more now with the pump mostly due to kinked cannulas.  Or ginger cookies.  WHY can't I avoid ginger cookies, and WHAT is the correct bolus?

It's bizarro, the mental gymnastics this disease causes.


4.  Speaking of Dex, I am seeing a lot of ??? and Sensor Fails, almost like I'm wearing the 7 again.  It's barely over a year old, do you think that has anything to do with it?  I am approved for a new transmitter, (yearly benefit) but it's the new year and I haven't started working on that deductible yet, and...expensive.  But if it's not working as well, I may as well get that deductible met now and get a transmitter that works.




4. Speaking of Dex again. Glucovation.  I want in.  Guys left Dexcom, started their own company to make an over the counter, cheaper, anyone can use it CGM?  That sends data to your phone? With no calibration time?  No fingersticks?  And MORE accurate?  No prescription necessary? I WANT IN.  Do they need somebody in podunk az to test it for them?  Can I work from here for them?  WHAT CAN I DO TO HELP  MAKE THIS HAPPEN SOONER?

Man, I wish I had tons of money to invest.  This is going to be big. I can feel it in my pancreas.




5.  And finally, I saw this one when I was making the other memes, and I love it, so I will end with it. (Not diabetes related).