Thoughts on Breakthrough:Elizabeth Hughes....et al

SO.  I finally read Breakthrough.  I have been wanting to read this for awhile.  It was an emotional read for me, and I'll probably force my book group to read it, although they might get bored.  Talking/reading about diabetes doesn't get boring for me.  I'm diseased that way.

I have many, many thoughts on this.  I will try to organize them, but I make no guarantees.  If you are unfamiliar with it, the book chronicles the discovery of insulin, along with one of the first patients to get it, Elizabeth Hughes, the daughter of a Supreme Court justice and well-known diplomat.

First off, I am grateful.  We have come a long way.  I am not in an Institute slowly starving to death.  I am not dead.  I am here, and I have a lot of people (and dogs!) who are highlighted in this book to thank for that.  Gratitude is the overwhelming emotion here.  

However.  There are other points made, which I would like to address.

In this book, I was introduced to Dr. Allen, the physician who came up with the brilliant diet to starve diabetics to keep them alive.  It sucked, but it worked.  For awhile.  And for a long long time, he was THE expert on all things diabetic.  It is no accident that a prominent family contacted him to treat their daughter.  It is no accident that they funded his Institute, which accepted patients regardless of ability to pay.  He was the man, and he was convinced that a cure was around the corner, and if he could just keep these people alive long enough to get the treatment.....and he was right. (Well, right to the extent that insulin is a "cure", which it isn't, but it certainly was touted that way at the time.) 

At one point, Elizabeth's mother comes up with a concern we all share.  If there actually was a cure, wouldn't it be in Dr. Allen's best interest not to administer it to his patients?  Wouldn't he lose his practice?  She is reassured by the fact that he has taken the Hippocratic Oath.  He can't knowingly harm his patients.

And insulin comes on the scene, and Banting wins the Nobel Prize, and Dr. Allen loses everything.  EVERYTHING.  He is evicted from his institute.  It is completely razed to pay taxes.  He loses all funding, his practice falls apart, his life is a mess. Nobody remembers him.  He is a cautionary tale for those people looking for a cure.  It might ruin you.

Eli Lilly is the drug company that funds the insulin research.  They push for it.  They basically lobby Dr. Banting. It is one of the first (if not THE first) collaboration between researchers and drug companies.  They figure it out.  Insulin can get mass produced.  It can get to large amounts of patients.  It saves lives.  And in the process, it put Eli Lilly on the map.  And I am grateful.  But I am also skeptical.

According to this book, diabetes care revenues now represent over $3 billion in annual sales for Eli Lilly.  It is their second leading source of revenue.  Eli Lilly also has the reputation of taking over promising Type 1 studies, and killing them, labeling them "ineffective."  

I would write it off as conspiracy madness, but it happened in the study I participated in. Started off being run by Macrogenics.  They were super awesome to deal with. Eli Lilly came in and killed it with the label of ineffective. The office I went to was floored.  Ineffective was the one thing the drug wasn't.  That office had the most participants of any other office running the same study.  They knew what they saw.  And what they saw was a lot of people with dramatically reduced insulin usage, wonderful control, and a significant percentage of patients off insulin altogether, although it is unknown how long they would be able to stay off insulin. At least 2 years, in many cases. They also work with many many different drug companies, seeing as they're a research center, and they don't like working with Eli Lilly.  They take a long time to do reimbursements.  They're slow to answer anything.  They are just basically a pain in the tuckus to deal with.  

I think Eli Lilly remembers Dr. Allen.  They learned the lesson.  A cure would indeed, be disastrous for them.  

Dr. Allen also bemoans the "mass attack" approach taken to cure disease.  "Practically all medical discoveries have been made by individuals or small voluntary groups.  The idea of an organized mass attack therefore lacks basis in past experience."  And he's right.  Jonas Salk.  Banting and Best. Alexander Fleming.  That doesn't mean something good and astonishing can't come out of huge organizations.  The JDRF does amazing work.  But if the cure comes from somewhere else, I will take it.  If Dr. Faustman at Mass General is the one to do it, I'm in.  (I wish I had millions to give her) If it's Dr. Philipson,in Chicago. I'm good.  If it's you, thanks so much.  Please just make sure you raise the billion dollars necessary to get it FDA approved.  Also, can you stick around for 10 years for the process?  Thanks.

I have such a love/hate relationship with drug companies.  I love that they keep me alive.  I hate the way they do it.  I don't mind that they make money.  I do mind that they turn away research that doesn't make them money. I don't think they have a secret cure.  I do think they don't want one.  

This is SUCH a small part of the book.  It's mostly about Banting (a fascinating doctor who doesn't play well with others.  It's hard to see him getting funding today).  And it's about Elizabeth, and the stigma of disease being so strong she tells nobody about it.  It's virtually undiscussed.  There are probably many reasons other than "stigma"  and many of them directly tied to her personality, but it is astonishing how well she and her family hide her condition.

I have another issue, which is just making this post LONGER and LONGER and PLEASE STOP ALREADY.  But it does make it look like once insulin arrived, all you had to go is take a couple of shots, and voila!  Normalcy!  Eat whatever you want!  And compared to what they were living like, it is a lot more normal.  

But my life is not normal. It is almost normal. I remember normal.  Normal is grabbing a handful of cereal if the box is left out.  Normal is munching on chips and salsa without counting the dang things.  Normal is pizza on a busy night with no thoughts of repurcussions.  Normal is not being hooked up to devices.  Normal is sleeping through the night.  Normal is nice.   Normal is a word that sounds weird to me now because I've said it too much.

Still, I am grateful.  Thank you, Banting, Best, and others.  Thank you, Dr. Allen. Thank you, Elizabeth Hughes, and others who were willing to inject an unknown substance.  Thank you, Marjorie the dog.  

Doctor's visits. Yippee..

Endo visit this week.  And so it must be logged.

He laughed and laughed when I told him I got the placebo.  "But you did so well on it!"  I know.  My brain just really really wanted it, I guess.

My numbers haven't been stellar lately, especially at night.  Night time and diabetes don't mix well for me.  Either I'm up all night battling lows, or - and this is far more likely - I am up all night desperately injecting insulin trying to get below 200.  I swear I don't absorb it at night or something.  Unless I do, and then crash.

And I know it's wonky sometimes, but I love that Dex at night.  Even when it misbehaves, I am quick to forgive.  Because it wakes me up when I'm high, and I would have never known.

The download from my meter had the alert "patient's night numbers are significantly different than daytime." or something to that effect.  Yes, I know.  What is UP?

He mentioned pump therapy, so I could increase the basal rate at night, but said "not yet."  I was all set to ask for a pump - so please tell me "why not yet?"  

"Well, there's this new product from Tandem..."

"The T-slim.  Yes.  I know.  That's the pump I want."

"You're way ahead of me."  It's supposed to integrate with the new Dexcom a lot better in the coming months, so he wants to wait until that's done before he puts me on it.  I get it.  Wait for the upgrade before buying the product.  In the meantime, there's also a new basal insulin from Novo coming out that is supposed to be really great.  So there's THAT to wait for...so I'm just waiting.  And hoping my nights get better.  Sigh.

A1C was 6.7.  Not fabulous.  Not terrible.  A .4% increase from 6 months ago.

LDL cholesterol still high.  Switched statins.  I grumbled some more about hating cholesterol meds.  He didn't care.

I had him run a CBC again, just because of the experience at Walgreens.  He called bullsh*t (literally he said that, I don't know why it made me smile so much) on my having low hemoglobin, but ran the test anyway.  It's all fine.  As I suspected.  WBC still a touch low.  I guess that's how I roll.

In the meantime, I am also trying to get my G4 Dex to come before the new year comes and my deductible resets.  It's not looking good, even though the one year mark is Dec.20.  Looks like I'll hit that deductible early next year.  

Is It the Machine? Or Me?

So, in honor of National Diabetes Month, Walgreen's is doing a free A1C in their take care clinics or 24 hour locations.  Hey, you can't beat free.  And who doesn't obsess about their A1C constantly?  (What? You don't?  Good for you.) (Liar.)

So I went in.  He pulled out his little Bayer A1C now box, and ran the test.  Error Code.  Hmmm...look in the directions.  That particular error code means there is not enough hemoglobin to run the test.  Or, that he didn't shake it enough.  Let's do it again.

Prick the finger.  Shake the blood.  Lalalalala.  Wait 5 minutes.  Same error code.

"What's your hemoglobin?"

Um.  Well, I know a lot medically about myself.  Ask me my cholesterol.  Ask me my average blood pressure.  Ask my last a1c, or what my blood sugar was at any given time.  These are things I can answer.  But my current hemoglobin?  Can't pull that off the top of my head, sorry.

So I left without my free A1C.  Not the end of the world.  The guy at Walgreen's calls me a few hours later.  He ran a control on the machine and that worked.  He thinks I should have my hemoglobin checked, said "well, your blood did look a little puny there." OK, then. Huh.

So now I am obsessively googling  low hemoglobin, which the symptoms for are very vague.  Pale skin...well, I'm kind of a vampire anyway....difficulty concentrating....um..not sure?  I pulled out the results of my last CBC.  Last hemoglobin was 13.  So now I can answer that too.

My next appt is in a month.  So I think I can wait.  And a large part of me still thinks it was the machine.  But who knows.  It's not like my body is the best it can be.

It was nice of him to call and tell me he ran the control, though.  Super nice.

No More Texts, JDRF! You're too on the nose!

So, the JDRF is doing this "Be Type 1 For a Day" thing, where they will text you for 24 hours with updates simulating the disease.

I told my friends on Facebook about it.  I also signed up for it, just in case any of them did it, and asked, "was it anything like reality?" I did not want to answer "Uhh....I dunno."

I asked my sister if she signed up.  "Why would I want to do that? That would SUCK.  I have no delusions about how much your disease sucks, and I don't want to live it. "  Ok, then.

It did suck.  And what really sucked about it? It was incredibly accurate.  It told me I was high for no discernible reason.  It wondered if I would shoot up for an apple.  And it woke me up all night with inexplicable lows.  Of course, the fictional run I took right before dinner probably contributed to the fictional lows.

I don't want to do it again.  I already live with this reality.  I don't need texts pretending that I do.

But they nailed it.  It's like they've met a few people with Type 1, or something.

HOW is it that it's been 25 years?

No, not since diagnosis.  Since The Princess Bride was in theaters.  Man, I love that movie. And the book.  And this picture. (Click to embiggen).

If a Tree Falls In the Forest....

If you dream you're exercising, with Bob Harper...and you wake up sweaty and exhausted, does it count?

Let me 'splain.

180 before bed.

1 unit = 50 points correction.

So, you would think 2 units would be in order, yes?

Well, I thought so too, but I didn't want to go too low in the night, seeing as how nighttime lows pretty much SUCK, so I just did 1.5 units.

Dreaming of exercising.  Apparently I was feeling up to 2 classes with Bob Harper, and I did a cardio and a Yoga one.  Then we had lunch.  (I think I have been watching too much Biggest Loser on Netflix lately. But they pulled it, so now what?)

2 hours later, I roll over, feeling dizzy and disoriented. (Y'all know where I'm going with this, right?)  I pick up Dex, stare at it confusedly as it states LOW.  How did I miss all the alarms?  The dropping rapidly alarm, the under 70, the under 55?  The alarms that so often keep me awake unnecessarily?

Mostly, I'm just dizzy  - my main hypo symptom now - ( as a side note, it's so odd how the symptoms change.  Can one thing with diabetes stay the same?  JUST ONE?) and I pop a Starburst and decide to check with my meter just to make sure Dex isn't lying.  Because, you know, sometimes it does.

39.

Awesome.

I crawl out of bed, slink on the tile floor, and just yell out 'help'.  My husband jumps up - "What's up?"  Thank goodness his night owl tendencies won out and he was awake last night around midnight.

"39.  Help."

I am sweating profusely.  My heart is jumping.  Lying on the cool tile feels unbelievably good.  I think back to my dream, and wonder if I can count this as exercise.  After all, my heart rate is up, I've worked up a good sweat, and my sugars dropped. I have all the "symptoms" of a hard workout.

A glass of milk appears by my side. I down it.  Then a glass of chocolate milk appears.  Gone.  More candy.  Yum.  I start to feel better.

I head back to bed, wondering about the rebound high, and deciding I don't care.  A 73 on the meter confirms I am rising quickly, the symptoms change from sweaty and dizzy to shaky.  Pretty soon the Dex agrees.  244 with double arrows up!!  Then it dropped to the 180's. I drift back and forth between sleep, and checking my CGM.  The sugars are going up and down, and I want them to stabilize before I know how much to correct.

Finally, I decide things have calmed down, about 3 hours later.  233.  OK.  With a 50 point correction conversion, that means....screw it. 1.5 units again.  I am NOT doing that again.

Woke up in the low 80s.

Apparently exercising in your dreams is very, very effective.

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.

Today, I Was A Moron.

Today I went out to lunch at a place that serves yummy sandwiches and salads. I often order the same thing every time I go.

I ordered. I sat down. As I waited for my order, I bolused for the tasty sandwich with thick 12-grain bread coming my way.

About 5 minutes later the server shows up with my cobb salad. Which is what I had ordered. It's also something I would consider not bolusing for, or maybe doing a minimal bolus to cover the carrots and whatever they might put in the dressing. How hard is it to remember what you ordered? Apparently, that is a tricky situation.

Hmmm...okay then. Much insulin about to be coursing through the system. Lunch not offering the carbs to offset the insulin. Fortunately, they give you a cookie with every order, whether you want it or not. And so, I ate my cookie, stole my daughter's cookie, and half of my husband's.

They did not get dessert.

Because today, I was a moron.

High as a Kite. And Not in a Good Way.

So, last night I saw a blood sugar reading of over 300.

I haven't been that high since I was diagnosed, and I realized it was kind of a 'mental barrier' for me. I guess there was a deep inner dialogue that said "you may be close to 240, but at least you're nowhere near 300. Your pancreas won't ever let you get that high." Apparently, my pancreas will let me soar right up there with Cheech and Chong.

Speaking of the personification of organs, I always picture my pancreas as really really sad that it isn't working. I know others have it sipping pina coladas, or mocking everyone while it collects unemployment, but I always see it as trying really hard, and it keeps getting smacked down. Kind of like Charlie Brown with the football.

(Lucy is my immune system. Too bratty for her own good. Charlie Brown is my pancreas. A hard worker that just can't seem to get it right. Someday, he'll kick that football, which is full of islet cells. You just wait and see. Or, more likely, someone will kick it for him while he stands by and cheers as Lucy is thwarted.)

I have way too much time to think about this.

At least I know what caused the 317, which isn't always the case with highs. I was going low right before yoga class, and I seriously overtreated, thinking what with the exercise, and the tastiness of this particular carby treat, what with the bananas AND the brownies...yeah.

I also learned that 10 days might be too long for the Dex to handle. After yoga, it said 122, so I was congratulating myself on the dealing well with the massive dessert. Oh, but the meter read 252. OK, time to change the sensor. But since I had no idea if that was 252 and *rising*, or if I was coming *down* from an even higher number, I figured I would check again in a half hour before I corrected. And then, well, I forgot, what with the Tivo'd shows to watch, until Dex buzzed that it needed 2 start up bg's, which, of course, was 2 hours later. Whoops. My bad. Well, the bad belongs to Diabetes, but still, I seriously could have handled that better. It also showed me how dependent I've become on the Dex in such a short time.

Again, live and learn. And You're a Good Man, Charlie Brown Pancreas.

High? As it turns out, not really.

4:30 a.m. BUZZ!! I grab the Dex groggily. High. Over 200. Mmmmkay. Since I'm awake anyway, I stumble to the toilet, turn the light on in there, and give myself a shot to bring the sugars down.

As I climb back into bed, my husband asks me if I am low. I tell him no, it's high this time, and settle down. Then it occurs to me. 'This is a new sensor. I should double check that high with my meter.'

119. I just administered enough insulin to drop me 100 points and I'm at 119???? Well, that can't be good. In fact, it could be really, really bad.

So I do what I need to, I eat some carbs. (Doesn't everybody bolus at 4:30 in the morning for a little snack?) I recalibrate the Dex. I remind my husband where the glucagon is in my nightstand, just in case. I settle back in bed, but I know the rest of the night is pretty much shot when it comes to any actual sleeping. My husband tells me "I'm awake with you" and I love him for it.

My friends, it's moments like these that make the FDA balk at the artificial pancreas. My Dex is accurate most of the time. I would guess that it's close to 90%. I mean, there was the time when it said 276 and I was in the 120's, but I knew that one was screwy - it had ??? right before, and while I don't always 'feel high' (insert random drug reference here) I would have noticed a 276. And it's not always accurate on exactly HOW low I am, but it's definitely a warning that I didn't have before, and one that I love. Plus, the fact that I can remember these anomalies shows me how rare they are. If I was saying 'every day this sucker messes up constantly' things would be different.

I've only had it for a month. I reserve the right to change my tune. Your diabetes may vary, of course.

But if an artificial pancreas thought you were at 276 and started dosing enough insulin to drop you over 140 points when you aren't even at 140, the lawsuits are going to pile up like a lazy person's laundry. (Not that I would know anything about those piles.)

So, the question is, is it worth it? How accurate does it have to be before it becomes available? When do the benefits outweigh the risks? Everyone has to answer that for themselves. Again, I reserve the right to change my mind, but at the moment I say, YES it's worth it. Bring it on. Severe lows and highs are ALWAYS a risk for diabetics. We know it. We hate it, but we know it. And while my precious Dex messes with me sometimes, the thought of going back to random finger pricks to manage makes me want to vomit. Increasing our quality of life and our ability to manage is always a good thing. (Of course, if the artificial pancreas kills me, I might feel differently.)(But I would be dead, so I probably wouldn't care.) (My family would, though.)

Plus, I don't see the option of shots or pumps going away. I think the AP would just be another option for patients who want it. Some will be too scared to take it. Others will jump on it. Others will wait and see. Others might go back and forth. We're good that way.

So there you have it. I survived the Dex misreading something, and it got me thinking. I now know why they tell you to double check before you treat. I mean, I knew that before, and I typically do check, but it's very difficult to be responsible for my actions at 4:30 a.m. Live and learn.

Happy Diaversary To Me!

It's been 3 years. I'm still cheating death. Good for me.

I went into the doctor because I felt like total crap, and could not get a teaspoon of saliva to save my life. The thirst was unbelievable, my vision was wonky, and the weight was melting off. I was pretty sure what I was going to hear, but still....*maybe* it was something else....something Google didn't know about.

(Googling frequent thirst doesn't come up with a whole lot of options besides flashing neon DIABETES signs.)

It was a doctor I hadn't been to before, I was still fairly new to this area and I didn't like the one visit to an internist I'd been to. So I literally picked the closest one with my insurance and made an appointment. I weighed in, gave a urine sample, and waited.

The nurse walks into the doctor's office, and I hear the words "spilling sugar and ketones". That didn't mean a whole lot to me then, but the doctor's reaction was not good. There was sighing and I swear I heard grimacing. One CAN hear a facial expression from the next room, if one is careful enough.

And so, after the initial world tilting words of "You're diabetic, by the way. Type 1. No question." Then he began the litany of "leading cause of blindness, highest rate of kidney failure, and I'm sure you can live a long and healthy life."

He actually was a nice doctor, he just didn't deliver news well. He retired shortly thereafter, and I am very happy with my new medical team.

So the next day I was hospitalized, and as the insulin drip started, and the lab tests came back, and I met the endocrinologist, I was just so happy that I would start feeling better, and the first night there, I didn't have to get up to pee 8 times. I didn't have to get up to pee at all. It was awesome.

I had no idea how different my life would be. But I do remember staring at the TV at an ad for new mint M&M's, and I wondered if I would ever eat one. Tears may have been involved.

So last week as I thought about this anniversary, I thought, "I'm going to go get those M&M's, and I'm going to bolus for them, and love every minute."

Turns out, they don't make them anymore, they weren't a hit. I guess my prediction of "never eating one" was accurate after all.

It's OK. They make other M&M's.

ONE thing...Hmmm.

Ok, blog carnivals. This month the question is: What is one thing you are looking forward to in 2012? (Diabetes related).

I'm pretty sure: "a cure, duh!" is not what they're going for. But it would be nice.

One thing I am looking forward to? Staying out of the hospital. I managed it this past year, I can do it again. :)

“This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/january-dsma-blog-carnival/“.

Because Everybody Else Is Talking About These 2 Things

I'm a little late to the party, I guess. But everybody seems to be talking about 2 things: MTV's True Life: I have diabetes, and Paula Deen.

I watched the episode online. It was hard to watch. It was hard to see someone dealing with diabetes and pregnancy, someone who in all likelihood was misdiagnosed as a Type 2, and then got lectured because she couldn't keep the sugars down with diet and pills, and eventually got told she was a Type 1. All at 19. Holy cow. Did they not run a GAD test? Just because you're over 18 does not mean you can't be a Type 1.

It was hard to see someone trying to be a normal college student. It was hard to watch him look at a 277 and say "not bad", even though it was infinitely better than the 405 he had. It was hard because if there is one thing I am truly grateful for, it's that I did not have this in college. Even though I am not a drinker, I think managing this and college at the same time would have been a nightmare of epic proportions.

I bet they had to search far and wide for someone who has a hard time with the expense of this disease. I mean, everybody else can handle it so easily. And to see her working 24 hours a day and with an A1c running at 8.9%, I could just feel how exhausted she was.

It was a good episode. It showed things how they are,the friends being curious and helpful,the exhaustion and the frustration, the doctor's visits and comments, to the disease being forefront and trying to dictate everything.

And switching gears completely: Paula Deen. People are railing on her that her food caused her diabetes. 'She's a poster child for how "not to eat."'

Sometimes I think diabetes, especially Type 2, is a lot like hair. Let me explain. There is such a thing as frizzy hair. There's a large genetic component to said hair. There are products and lifestyle changes that can help prevent it, but for many people, eventually the hair will frizz out. Once the hair is frizzy, there are ways that can calm it down, essentially making it look fine, and 'reducing the symptoms' of frizzy hair, but deep down, the hair wants to spazz out. And for some people, those products never really work all that well, and who knows what will cause a flare? Humidity is just one thing that will wreak havoc, after all.

Judgie folks will see these people, and blame them completely for the frizz. After all, don't they know it's ALL THEIR FAULT? They've never heard of conditioner???? They shouldn't have used that round brush when they were kids. Poor losers, bringing it on themselves, tsk. tsk. Look at that frizz. Often, the judgies saying stuff like this have no idea what it's like to look in the mirror day after day trying to tame the frizz. They very likely did the same things to their hair that the frizzy people did. They're lucky, and they pride themselves on their good luck.

Paula, your hair got frizzy. I don't blame you for the frizz. I hope you find a way to calm it down, whether that be a new product, or washing less often, or massaging your scalp, or very likely a combination of all of it. You go, you deal with your hair your own way. Hair is different for everyone, and don't let anyone tell you differently.

I KNEW Mornings Were Evil

So if there's one thing I have learned in the first week with my precious, it's this....

Getting out of bed is bad for diabetes.

I was really excited to see what I did at night. Apparently, I hold steady. (yay!) But the second I wake up and get out of bed, the sugars start slowly climbing. The earlier I get up, the worse it is. And if I have to set the alarm for something especially early, forget it.

Stupid non-girly hormones, working to get me out of bed and spiking my sugars. At least I know my "fasting sugars" don't usually reflect where I've been all night.

Yesterday, I had lunch, and I swear to you, my sugars did not budge for about 4 hours from the minute I bolused. I started at 110 and didn't go above 116 (cured!). I took a nap - hey, don't judge, it was a rough emotional day. Getting up from that nap sent me climbing, and even through dinner and correction boluses, I never fully recovered from that climb.

Clearly the best option is to stay in bed all day.

I knew it.

First day with My Precious

Ah, my precious. I have been trained, I have been stabbed, and now I can tell you at any given time what's going on with my blood sugar. I can be cool and post pictures of my Dexcom. (But I won't, not just yet). (I can't find my camera, and I'm lazy).

I went low that afternoon. My Precious buzzed and booped. Ooh, the first buzz. What does it mean. Under 80! Meter says no. Under 55! DEXCOM NO-LIKEY UNDER 55! Meter said 68, so I treated. I kind of love peppermint bark, btw.

Then I had a lovely dinner and watched my sugars climb. It almost hit that high threshold, but not quite. I was fascinated, and I think I am easily amused. However, going to bed at 175, I decided to take a half unit of insulin. My correction value has been changing, and I decided that half would probably get me to around 140-120, which is all well and good. (Sometimes 1 unit drops me 80, sometimes 50. Consistency, thy name isn't diabetes.)

ALL NIGHT LONG. (Cue the Lionel Richie soundtrack).
Buzz. Buzz. BUZZ. LOW!!! UNDER 80!!! LOW!! UNDER 80!!! 3 times it did this, and I checked my meter. 97. 102. 96. Please be quiet, my precious. I'm fine. I'm sleeping.

LOW!!! UNDER 55!!!! At that point, I just grabbed a candy and popped it, figuring I probably was low, and maybe it would make precious be quiet. LOW! UNDER 80!

My husband "Did something beep? What's going on?"

Sorry, babe. Diabetes apparently is a loud disease.

And on it went, until I was coherent enough in the morning to change the low alert from 80 to 70.

I have been longing to know what my blood sugars do during the night. Spot checking isn't really helpful. Why would I go to bed at 90 and wake up at 140? When did that rise happen? Right in the morning, or have I been rollercoasting all night? Going to bed at 160? Waking at 160? Did I really do NOTHING at night? So I was longing for that lovely graph, that lovely telling of what my body was going through while I was unconscious. Apparently, I have to be conscious to see it. It stayed pretty consistent...ly low. And it did start to rise around 7:30 in the a.m. So that's good to know.

It seems to be more accurate if I'm above 100. Otherwise, my precious runs a little lower than the meter. It's in my abdomen right now. I will try my arm as the next site, see how that goes.

And despite the buzzing, I love it. I love it very much.

Insurance Makes Me Laugh (it's either that or cry)

It's time to renew my 3 month supply of Novolog. Every time this happens, my insurance wants to remind me that Humalog is cheaper. Did you hear me, patient x? CHEAPER!!

(Also, they keep sending me letters telling me to check my A1C. I think the fact that they've paid for most all of my A1C's should stop these letters. It doesn't.)

So, today I got a letter about the relative cheapness of Humalog. And a friendly little lecture about why most patients choose the lower cost option. Smart patients. Financially savvy patients. Patients who care about their health and their pocketbook.

Behold.

(Click to embiggen.)

I guess 0% of their patients are smart and savvy. I could be the first.