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."

Gah.

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........

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.

Endo Visits Must Be Logged....

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

Hmmm..

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.....

YDMV - A Loving/Hateful Phrase

YDMV - Your Diabetes May Vary. I love this phrase. I hate this phrase.

I love it because it's SO TRUE. What will work for one person won't work for another, and people that get that are my instant BFF's. There are people who understand that exercise may drop your sugars or raise them, people who get that correction boluses are not created equal. People who understand that just because it's generally accepted wisdom, it doesn't mean that it will work for you. Everybody's body is different. That's just the way the world is. Doctors and CDE's who get this are worth their weight in gold. (or worth their "wait", as it often is.) YDMV.

I hate this phrase for the same reason. It's SO TRUE. Diabetes would be so much easier if insulin and glucose and carbs and protein and exercise and sleep and sickness and stress would act the exact same way in everybody's body. If one unit of Humalog/Novolog would exactly cover 15 grams of carbs, no matter how much you weigh, how long you've had the disease, or how active, sick, or stressed you are. That way, when somebody asks "How do I counteract this high?" everybody would have the same answer, and it would WORK. The way it's SUPPOSED to. I wish all carbohydrates were created equal. I wish they wouldn't vary, based on how much fat and protein you consume with them, or how refined they are. I wish fruit came with nutrition labels.

But if wishes were fishes....

I think everybody with chronic illness feels this way. Wouldn't it be great if MS or Lupus responded exactly the same way to treatment and caused identical symptoms? Wouldn't life be better for those with chronic fatigue if going off gluten fixed everything, all the time? Wouldn't cancer patients have peace of mind knowing for certainly what the radiation/chemo will do? YDMV. Substitute "diabetes" for "disease" and it pretty much describes everything.

Except strep. I think that pretty much responds to antibiotics most (if not all) of the time. I could be wrong. After all, YDMV.

I Don't Mean to Pry...

Scene. Me at the grocery store. Produce section. I live a very exciting and exotic life.

"Are you finding everything OK?"

"Yes, thank you."

"Ma'am, I don't mean to get in your business, but...

*eyebrow raise*

"What is that thing on your arm?"

"Oh, that. I have diabetes, and it's called a continuous glucose monitor. It checks my blood sugar every 5 minutes for me."

"No shi....throat clearing...No kidding!" (He did work there after all. I don't think his manager would appreciate his swearing at customers, even in astonishment at the wonder of our world.)

"What will they think of next!!"

I don't know. A cure? But it was kind of a fun little moment, showing this guy the advancements we've made, even though we have a long way to go.

(See how I use "we" as if I have had anything to do with it? Or maybe it's the "Royal We". I could have delusions of grandeur, you never know.)

It was the complete opposite of Kerri's story, which really does make me want to punch people in the throat. Maybe if I was in the candy aisle instead of the produce section I would have received similar treatment.

There's a comedian who goes around saying something to the effect of "Alcoholism is the only disease you get blamed for having." Well, I'm pretty sure there are a lot of PWD who would disagree with that. And people with AIDS. (Ever heard of condoms?) And even people with cancer (You shouldn't have used your cell phone so much! Didn't you ever hear of sunscreen?!) More and more we are getting blamed for what happens to be a hugely complicated mix of genetics, behavior, diet, environment, and plain old luck.

The focus on prevention, while very very good, (it really IS worth a pound of cure) has had the unfortunate side effect of people believing everything can be prevented and everything can be "blamed" on something.

To paraphrase Sondheim - So what matters is the blame? Somebody to blame? Fine, if that's the thing you enjoy, placing the blame, if that's the aim, give me the blame. Just give me the cure.

Sweet Irony

So, the physical I had to go into? The one they said I had to do or else they would drop me as a patient? The one they blamed my insurance company for?

Not covered by insurance.

It isn't "I haven't met my deductible" not covered. Not covered as in "Not covered." Apparently my insurance thinks I've been in to my PCP a little too often. (Once every 3 years is way too much.) My insurance company paid my doctor $1.25. As in, the cost of a bottled water.

HAHAHAHAHAHAHAHAHAHAHA

Of course, I'm laughing right now because my PCP hasn't charged ME to make up the 200+ dollars. Yet. If they do, I will laugh at them. It's their fault I went in, they basically forced me to make the appointment. If they had let me handle things the way I normally do, everything would be fine. Both for them and for me. They wouldn't have had to waste a doctor and his assistant's time just to make $1.25. Nope, they could have used that time to actually make money and see patients who need it.

I'll probably still have to pay it, though.

A LOT of crap thrown out there at once.

So the other day, I bolused too much because I forgot what I ordered.

Today, I went to In-N-Out (do not judge my food choices) and realized I had forgotten my insulin altogether. My whole kit. No meter, no insulin, nothing. I couldn't test OR bolus.

Fabulous.

I called my husband to see if he could steal some insulin from his diabetic co-worker. No dice. They guy didn't have any extra needles for his pen.

I realized I was right by my endo's office, so I ran in and begged for a sample of Novolog. They gave me one, no problem-o. Whew.

Then I went to my Primary Care for a "physical" because I hadn't seen him in a while, and they were threatening to drop me as a patient. I complained about this. They blamed the insurance companies. They said "Oh yeah, you're here because insurance sent you a letter, right?" I said "No, I'm here because you said I couldn't come anymore unless I scheduled this."

So when my PCP walked in, he said "Hi, Heidi, I heard we strong-armed you into showing up." I laughed. And waited for the next question. Oh, yes, here it is:

"How's the diabetes?"

I always want to answer this question with "Killing me slowly, thanks, but I'm doing everything I can to make it SUPER slow." But I chicken out, and say "I'm controlling it as best I can."

And then the phsycial consisted of basically scrolling through the computer looking over all my labs from the past year or so. I wanted to be off the cholesterol meds.

"But they're working. And you need to lower it a little more. Your LDL is still high for a diabetic. As soon as Lipitor goes generic, you should switch to that."

"They have long term side effects. The cholesterol is genetic. (We won't discuss the In-N-Out). I have a family history of high cholesterol but no heart attacks. High cholesterol is a fake problem. Statins prevent second or third heart attacks, not first ones."

"The medical data would suggest otherwise. Although, yes, they are better at preventing subsequent heart attacks."

"They create long term memory issues."

"The benefits outweigh the risks. Especially for you. You're diabetic."

And that's always where the discussion ends. At "you're diabetic." Automatically high-risk for pretty much everything under the sun. At least he didn't try to throw BP meds or aspirin at me "just in case."

And he gave me a copy of my last labs that didn't get sent to me. I told him I always ask for a copy but sometimes they send one and sometimes they don't. He told me if the doctor doesn't make any notes like "discuss with patient" or "needs to change x" or even "looks good" than the lab work doesn't even go to the MA for her to send out. And thus the mystery of sporadic labwork was solved. And my last CRP (0.4 vs.1.1) was awesome, which boosted his "pro-statin" stance.

Whatever. I do take the meds, I just whine about it.

I showed him my Dexcom, which fascinated him to no end. He had never seen one. And whenever a doctor besides my endo sees it, they always say the same thing, and so I waited....waited...yep. Here it is:

"That's one step closer to an artificial pancreas. They've almost done it!"

Yes, yes they have. Next week I'll go pick it up. (Maybe if Phineas and Ferb worked on one...)

In other medical news, I did mention that I've been hoarse for about 6 weeks now. He gave me a nasal spray, told me to try that, if that doesn't work, try heart burn meds, and if that doesn't work, then I'll need to see an ENT.

In the meantime, the fact that I get paid to do voicing work is a problem. Especially since the voicing I do is for medical reminder calls. (If you get an automated medical reminder call, it might be me. It probably isn't, but the possibility is there. Just remember that.) Who wants a message that says "Your appointment is at 3 p.m." from somebody who sounds like they're horribly contagious? Nobody, that's who.

Well, if you made it to the end of this post, good for you. Truly.