Thursday, June 28, 2012

We Are Writing To Inform You...

....that everything you ever thought about your disease is all an illusion and in your head.

Or, to be more accurate.."that you were randomized into the Placebo arm of the Protege study."


The rashes.  Probably due to the Picc line.  The nausea, the mild fevers, the anxiety, the insulin needs changing...completely unrelated.  Every day my temp went up! (They checked me every 15 minutes after the infusion, for an hour.)  I guess it was just me hoping for an effect, or maybe I just have a higher body temp at that time of day. (I don't even know if that's a thing.)

It makes sense. then, why I thought the first infusion helped so much but the second one did nothing.  My insulin needs dropped due to standard honeymooning.  It also explains why they had people drop their Lantus from 28 to 6, and I never got anywhere near that benefit.  I thought it was because I started with a lower dose.

But the honeymooning for 2 years?  That was just....normal?  Placebo effect?  Luck?

The silver lining in this cloud of "I left my family for weeks at a time for nothing." is that if the drug turns out to be toxic, I'm good!  No, that's not actually a silver lining, because I do not wish drug toxicity on anyone.  The real silver lining is that now I may be eligible for another study in the future.  That is, assuming they study anybody that's not in the realm of newly diagnosed.

Now I'm even madder that they stopped the studies on the drug.  I have joined the ranks of diabetics who could have been helped by this drug but aren't going to be because drug companies suck.

I wonder what else is an illusion........

Friday, June 22, 2012

Fun Times with Dex-y.

So today I had a salad for lunch and didn't bolus.  Then I went outside and floated in my pool.  (Yes, my life is hard.  So rough.)  I was out of range from the dexcom for about an hour.  When I came back in, and grabbed it, after a minute or so it told me I was 381.  I was like "Dude, I guess I should have bolused!"  (Yes, I talk to myself, but no, I don't usually call myself "dude.")

But my meter said 163.  Usually at this point I just swear shrug and recalibrate, but today I wanted to see what would happen if I just let it ride.  Would the dex think I stayed high?  Would it eventually figure it out?  Would I just get some ??? (I HATE those question marks more than a rational person should.)  and is a "sensor failed" in my future?

So far, I have lots of double down arrows.  Apparently I am dropping like a lead balloon. Round and round she goes, where she stops, nobody knows.  I am really enjoying staring at it constantly.  I may need psychiatric help.

In other Dex news, does anyone else's have a split personality?  During the day, it's accurate, happy, and on track with my finger pricks. (Present time excepted).  However, at night, it goes rogue.  It wants to wake me up constantly and tell me I'm in the 30's.  Having learned my lesson, I do not treat based on cgm readings.  So the other night when it read "LOW", I determined that I was very coherent for being so close to death, and I did a finger prick.  116.  I entered that in.  Dex got all offended that I thought it was so off, and demanded a second reading.  Second finger prick yielded a 123.  Ha. So it capitulated and said 115.  After that, it kept waking me up telling me how sky-high I was.  I decided to ignore it.  I woke up to a 278 on my cgm and a 120 on my meter.  But that day it was happy to comply.

It often thinks I'm tanking at night, or soaring.  I think it gets lonely on my nightstand or under my pillow.  It's very needy and needs lots of attention, and apparently is willing to do anything to get it.  (It's kind of like Bella from Twilight that way.)  It's gotten to the point that I ignore any low alarms, unless it says under 55.  Then I will check, but I'm usually just fine.  During the day, I always check when it alarms under 70, and I'll usually be.......under 70.  So I don't know what's up with that.  The nighttime numbers are the ones I really wanted to see, and now it's all Mr. Hyde at night, and well, whatever. 

It's probably me.  I must sleep in a very peculiar manner.

Friday, June 8, 2012

Endo Visits Must Be Logged....

....or else they didn't happen, right?


He still loves me and wishes every patient was just like me. I'm pretty sure he doesn't say that to everybody. That's my story and I'm sticking to it.

A1c is still 6.3, which is where it's been since last June. Ok, then. I guess that's just how I roll. I was surprised, because the past few months, diabetes has kicked my butt a few (dozen) times, and I thought that would be reflected in the numbers. But I guess not. So....yay?

He gave me some Novolog pens to try, just to see if I like them better than my needles. I would tell you, but I keep forgetting to actually use the pen, so at this point in time, I have no opinion. I need to just keep it with the rest of my stuff, instead of in the fridge, where I just forget about everything until it's time to switch insulins.

It's HOT here.

The rest of my lab numbers should be showing up in the mail anytime now. All I got over the phone was "everything else looks good, kidney and liver is fine, cholesterol is good, your white blood cells were a tad low, but since everything else is fine, I'm not concerned."

Which of course sent me running to Dr. Google and had me self diagnosing everything from leukemia to a basic viral infection. I'm pretty sure I have everything. I would like to see what the cholesterol is, that's what everybody seems to care about, anyway. And so I get to watch my mail with anticipation, which actually brings me great joy. I always love it when there's something other than credit card offers and junk mail. But it also sent me running to my old labs and I can't actually see any WBC counts run before. He always just ran a CMP, not a CBC. And so I have no baseline! Was I always running a little low? A little high? Did I change? These are mysteries that will never be solved.

I know I've had CBC's in the past.

There's got to be one here somewhere.....