Diabetics are Naturally Sweet

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

2012-02-17T11:25:00.000-08:00

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.

2012-02-06T10:52:00.000-08:00

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!

2012-01-27T09:26:00.000-08:00

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.

2012-01-24T16:22:00.000-08:00

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

2012-01-23T09:55:00.000-08:00

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

2012-01-10T10:32:00.000-08:00

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

2012-01-05T16:17:00.000-08:00

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)

2012-01-03T13:42:00.000-08:00

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.

One More Thing

2011-12-27T15:46:00.000-08:00

Get training on the Dexcom on Jan. 4. Hee hee.

I forgot to mention last time that my doctor has contnued to use me as a guinea pig. He put me on some heartburn medication to see if a ppi (proton pump inhibitor) response would help me. He says there is data that a ppi response can stimulate beta cells.

It took a week or so, but now I am having more lows than usual. He may be right. It's kind of exciting. I definitely need to lower my bolus rate a tad. So we'll see about that. In the meantime, "my precious" (dexcom) will help notify me of those lows.

Fun times at the endo. Plus CAPS. LOTS OF CAPS.

2011-12-22T20:14:00.000-08:00

So, I went to the endocrinologist last week. He still loves me, thinks my attitude of "I want more beta cells and I don't care what I have to do to get them" is great. My a1c is still 6.3.

It's a nice rhyming number. (A1C! 6.3! There's a cheer in there somewhere.)

My LDL is also down to the 150's, so that's better, but we're still treating it. HDL still high, so that's good.

He also did some kind of sensitivity test, and my cardiac risk is low. I'm not sure what the test is called, because they DIDN'T SEND ME A COPY OF MY RESULTS, even though I ask every time.

I swear that nurse/tech/whatever her title is doesn't like me. I also left without a follow up appointment. It was weird.

"OK, I think I need to make an appointment for 3 or 6 months out."
"He didn't say. When you get your lab work then he'll tell you."
"It's never worked like that before. Can I just make an appointment now?"
"No."

OK, I'll leave now.

So, the real question I had for my doc was regarding my Dexcom. CGM. The Golden Ticket. WHY didn't I get one last time? Denied? What can I do now?

"Huh, I never heard back. Let me check on that."

Then he said he could trial me for a week, but they one they have cost him $800 out of his own pocket, and it wasn't charged, and I would have to BRING IT BACK because it cost him so much money, and I would have to be careful, and the nurse that usually educates on it isn't here, and it was pretty clear he didn't want to hand it over.

And...as it turns out, they never sent the request. That could be why I didn't get one. If my insurance or the Dexcom people don't know I want one, they don't magically send one out randomly. Funny how that works. So this time I stayed there until the request was faxed.

Then I went to lunch with my husband, after being scolded for wanting follow up care.

At lunch the Dexcom people called me. YES. They aren't in-network, but they know people who are, they will be calling me in the next couple of days.

Yada yada yada.....a bunch of phone calls and nagging of my doctor's office later.....IT'S HERE. TODAY. I AM JUMPING UP AND DOWN.

Did I mention that my deductible is met and it didn't cost me anything? 2 weeks later, that would have been quite the different story.

Did I also mention I don't have a clue as to what I'm doing? I guess I will be calling tomorrow to go meet with the nurse to have her show me what to do. While there, I'm going to schedule a follow up appt. You know, if they let me.

"Cause I've got a Golden Ticket...."

How Was Your Thanksgiving?

2011-12-03T10:54:00.000-08:00

Diabetes can make Thanksgiving challenging. Which is surprising, you know, because it makes everything else SO EASY.

Anyway, this year we went over to a friend's house, which was lovely, because then I didn't have to clean. I still had to cook some stuffing, but that's OK, because it's one thing I can cook, and it's divine. Really.

Well, I bolused and ate the main meal. (and by "bolused" I mean "guessed completely" because I wasn't about to ask people exactly how much sugar they put in their yams and apples. Turns out: a lot).

An hour later they brought out the pie. Often I skip the desserts completely, because the GUESSING! Oh, the GUESSING, which leads to the SWINGING, which leads to the MIGRAINES, and leads to ALL CAPS, and my husband has to put up with my WHINING. But this is Thanksgiving and pie is required. The end. Well, I checked my sugars and saw slightly over 200. Oy. I guess the mealtime bolus was what we call "not great."

A GOOD diabetic would have waited until her sugars came down, or politely declined. A BAD diabetic would have just bolused more and attacked the pumpkin chiffon pie.

And as I ate piles of sugar with a starting bg of 204, I thought "May God have mercy on my kidneys." And He did. Because an hour later, I was 103, and the sugars stayed stable the rest of the day. But for the record, I have never taken more insulin in one day than I did this year on turkey day for one meal.

Pie. It's what helps. Who knew? How was your day?

November!

2011-11-03T12:17:00.000-07:00

It is National Diabetes Month.

It is also the month of Thanksgiving, thereby making it National Gratitude Month.

So --- I should be grateful for my diabetes.

Um. not quite there yet. If it saves me in a war, then we will talk. If it gets me a job that in turn pays for the insanely expensive medicine and equipment, I'm good. If I get paid lots of money for telling people how awesome it is, well, then, gratitude will pour forth. At the moment, I'm not quite there yet.

(Seriously, it did save this guy in a war. He was in Vietnam, and he went into DKA, and when the VietCong came upon his unit, they thought he was dead and didn't kill him. That's how he was diagnosed. I'm not even kidding about that - he spoke at a diabetic conference about it.)

But apparently, we are all supposed to wear blue every Friday in November to promote National Diabetes Month. I'm cool with that.

Somebody needs to explain this to me.

HOW is wearing blue going to raise money/awareness for anything? I mean, it's not like I answer the door to the UPS guy, and he's all "Wow, what's with the blue shirt, and I'm all "It's for diabetes" and he's all "I'm going to donate RIGHT NOW." I don't foresee conversations like that happening. Maybe I'm just being pessimistic. Because that could TOTALLY happen. Maybe if I was wearing a pin or something?

It's not like blue is that rare a color. But then, if you picked a rare color, nobody would wear it (everybody wear chartreuse to celebrate!). Also, I think it's the color for autism awareness. But I like blue, so I'll wear it on Fridays, and it'll be for a PURPOSE.

It's also National Epilepsy Month. For that one, we are supposed to wear purple. I guess we'll all just look like a giant bruise this month. Groovy.

What do you mean I can't quit? That's just RUDE.

2011-10-18T17:44:00.000-07:00

Ah, the lows. The waking up at 33. The going from 123 to 38 in half an hour, with no visible reason. (Brushing my teeth couldn't have dropped my sugars THAT much, right?) The 220 in the middle of the night, only to be corrected and then drop back to 38.

These things: They are not fun. (Hello, captain obvious.)

Dear Diabetes: I quit.

Dear Heidi: I don't mean to be rude, but Nope. You can't. Carry on. I'll be here.

Everything else I can quit! I've quit a couple of jobs in my life, and if I wanted to, I could quit my marriage, my kids, my church, my hair stylist - I could drop my dog off at the humane society, I could put my house up for sale, or I could walk away from it and ignore the mortgage, I can quit pretty much anything I want to, and the consequences would range from minor to truly life-altering. (I mean, if I quit my hairstylist, I would look baaaaad.) But none of them would be fatal. I don't want to quit any of those things, and I won't, but I love that the OPTION is there. I CHOOSE to stay in my house, my marriage, my religion, and keep that stupid dog, and I like that I know that's why I'm doing it. I like options.

Diabetes gives me very few options. Oh sure, there are some. Diet Coke or Diet Pepsi, for one. (And why anyone even MAKES Diet Pepsi, I have yet to understand.) Pumps vs. pens vs. needles. Humalog vs. Novolog. Sooooo many ways to treat. But in reality, these are fake options. The only real option is to PAY ATTENTION or DIE. Yippee-kie-ay.

No quitting. Ever. Not even if you whine.

So anyway, I forced my way into my endo's office to show off my highs and lows, and he switched me from Lantus to Levemir, and lowered the dose a tad. He ordered me a Dexcom, which he says is the "greatest thing for a diabetic since insulin." I WANT IT. I WANT IT A LOT. I know I would obsess over it constantly, but I've noticed that obsessing is encouraged with this disease. It also makes you crazy, but hey, sanity is overrated.

I may end up in the loony bin, but my a1c will be awesome.

We are waiting to see what the insurance says, since, you know, I've never passed out or spent quality time in the ER from my lows or anything, so I might not be the best candidate. You don't get the really GOOD diabetes treatment options until your disease is out of control. Good control is punished, and yet, it's clearly the best option.

I will stop saying options. It's sounding weird to me now. You know how words do that when you say them a lot? Options.....ooooooptiiionnns.....

For some reason, 38 is the number I've been seeing so much. Maybe the universe is using diabetes to send me a message and give me the lottery numbers or something. After all, if you can't explain the numbers, it must be a message from the cosmos, right? Every time I get a reading I don't get, (205? But I thought I was going LOW!) I'm going to take it as a numerology message. Ok, no. No, I'm not.

Also, I've been known to mildly swear at waitresses when they "Is Diet Pepsi OK?" Hell No, No it's not. Sorry about that yesterday, lady. It was a bad day.

Let's Just Hope the Insulin's Still Good, Yes? Also, Warthogs.

2011-09-30T13:33:00.000-07:00

So, I went low last week. The only thing I could think of is maybe it was due to a "training run" I did for a 5K that my daughter is doing, and I'm supposed to do it with her. I'm still not 100% sure I will participate in it - running completely baffles me. If there is anything more dull than putting one foot in front of the other for long periods of time, I don't know what it is. Possibly studying the brain chemistry of warthogs. That seems like it would be fairly boring.

OK, so last night I had another "training run" and let me tell you, training with super nice people who are still 1000 times better than you at running is not fun. It's kind of humiliating, but hey, what's life without a little humiliation? (Answer: fun.) (Note: I know these people are not thinking less of me. They know I'm a beginner. It's still mortifying.) I was super freaked out about going low, though, so I cut my bolus in half before eating a small dinner, and then ate a larger meal afterwards.

Of course, it was then that I nothiced the needles I stuck in my kit were gone, so it's highly possible that a few unused insulin needles fell out of my kit on the run, and now the people in that neighborhood are going to think heroin addicts are abundant in their streets, and leaving their crap everywhere. Sorry, peeps.

Finger prick at 2 a.m. : 256. Well, if the mission was "not going low" then I get a gold star. Platinum. I should probably be more specific in my mission statements.

In other news: Today begins the use of some insulin that showed up mail order and sat on my porch for a day and a half in the scorching sun while I was gone for the weekend. I love insurance companies and the hoops they make you jump through to get your meds paid for. They're so awesome and willing to work with you too. (What do you mean you don't want Humalog? Don't you know it's CHEAPER!?)

So we shall see if the boluses work, (bolusi? bolus's? How do you pluralize this word?) or if I have to pay out of pocket for insulin so I don't, you know, die. Did I mention it was 3 month's supply of both Lantus and Novolog? (I still have an effective bottle of Lantus. I don't know why I have more Lantus. I probably dropped a Novolog or something).

The thought of paying out of pocket for 6 bottles of insulin that are all over 100 bucks each, when I already met my $4000 deductible makes me want to jump for joy over how much I must be helping the economy. Think of the jobs I'm saving!!!!

Yes, I'm grateful I have insurance. Can you get them to pay if the mail order destroyed your stuff? Because I can't seem to.

My Day So Far

2011-09-21T11:15:00.000-07:00

I woke up this morning to the sound of my cell phone. I grabbed it, talked to my parents briefly, and then decided it was time to get up anyway, since it was only about 15 minutes before I usually get up. Then my sister called, we chatted, and I dosed my Lantus at my usual time. (I split my dose between morning and night. I know it's unusual, but it works for me. Usually.)

What? You don't care that my sister called? That's superfluous information? Yeah, you're right. Too bad.

I went onto the computer, and hit facebook. I admit I spend way too much time there. As I was trying to read a status update complaining about the new interface, I noticed I was having a hard time seeing it. It wasn't going blurry exactly, I just couldn't seem to focus on it for some reason, and the world started heading into a tunnel. I decided to check my sugars.

Yep. 33. I went "whoah, that's low" and grabbed 2 Starbursts, which I keep in my testing kit with my meter. I actually tapped an update onto fb about it, thinking I should let somebody know. Then I lay down, and stared at the ceiling as the sweat drenched me. I hate the sweat.

As my heart attempted to leap out of my chest, I thought "I am going to pass out, and I don't care." And then the next thought slooooooowly formed. "I am going to pass out. I should prevent that. I had candy. Need juice." And so I forced myself up and to the kitchen and poured myself whatever that combo was - orange/mango/pineapple/strawberry/every- fruit-ever-picked juice. And then I grabbed some Crunch Berries - just a handful.

And then I realized again - I LOVE Crunch Berries. It's a very tasty cereal.

And then I checked again, kind of thinking - I might be able to justify a whole bowl of Cap'n Crunch's chemicals. 89. And while it ruled out the ceral, I love that number. It is my new best friend. 5 minutes later it was 110. Then I ate breakfast. Who knows what bolus I should have used, I'm still not completely sure how high the rebound is going to go.

I haven't showered yet, but I'm thinking about it.

Good morning to me. Hey - it can only get better from here, right? RIGHT?

30 things about invisibility, er, illness.

2011-09-16T12:44:00.000-07:00

It is "National Invisible Chronic Illness Awareness Week." And that, my friends, is a mouthful. Holy crap - try saying that 10 times fast.

OK, then. What is a "visible" illness, exactly? I'm trying to think of one - down syndrome is visible, but it's not an "illness" or a "disease", it's an extra chromosome. I thought of my niece with a spinal cord injury, but that's an injury - she's not sick. I saw a show on Discovery about this woman with a giant tumor that weighed over 100 pounds - it was bigger than she was. Nasty. OK, let's celebrate that I don't have that! Or leprosy! Or ebola! Because those would suck. Hmmmm....maybe ALS? That's pretty visible, I guess.

Yes, I get very caught up in semantics.

If you have a visible illness that I didn't think of, and are now mad at me, I'm sorry.

OK, so it's a meme! Which is a strange word that I'm not entirely sure how to pronounce. But that's what it's called, so here goes.

"30 Things About My Chronic Illness" meme:
1. The illness I am living with is: Type 1 Diabetes.

2. I was diagnosed in the year: 2009

3. But I had symptoms since: late 2008.

4. The biggest adjustment I've had to make is: Hard question. Pretty much everything, and yet, not everything. Boy howdy, do I make sense. Food, exercise, and activities have had to change, but the basic who I am hasn't. Yes?

5. Most people assume: It's exactly the same as Type 2.

6. The hardest part about mornings are: Eating breakfast. I never did do it before, and now I am forced to fairly soon after I wake up. It's not really "hard", but it's a nuisance.

7. My favorite medical TV show is: Current one - House, the show about a brilliant doctor who misdiagnosis his patients 3 times before getting the right diagnosis, almost killing them in the process. Former one - Scrubs. Hilarious. Those are really the only 2 medical shows I've watched.

8. A gadget I couldn't live without: My testing kit. It is with me, always. Like God, only in small, gadgetry form.

9. The hardest part about nights are: wondering what my sugars will do that night, and hoping that my body wakes me up if I go hypo.

10. Each day I take: 5 shots, 1 pill, and 2 vitamins. Minimum, assuming the sugars don't need correction.

11. Regarding alternative treatments: If you find one that works for you, great. But sometimes they are really dangerous, and I get angry at the scams. But I love massage, relaxation techniques, and my chiropractor. Just don't ask me to drink saltwater and tell me it'll cure me.

12. If I had to choose between an invisible illness or visible I would choose Well, since the only visible illnesses I can think of are horrific ones, let's go invisible.

13. Regarding working and career: I've been home with my kids for a long time. I want to re-enter the work force now, but apparently job-searching at 36 and job searching at 21 are two very different things. Diabetes won't stop me from working, though.

14. People would be surprised to know: That I'm a one-eyed, one-eared, giant purple people eater.

15. The hardest thing to accept about my new reality has been: That I have to think about this ALL THE STINKING TIME. It regulates what and when I eat, as well as what and when I exercise, and I have to plan everything around it.

16. Something I never thought I could do with my illness but I did was: I don't know. Eat birthday cake?

17. The commercials about my illness: make me hate Wilfred Brimley. Also they are always on during the day and are geared to the elderly so they make me feel old.

18. Something I really miss doing since I was diagnosed is: I miss the general freedom of being able to pop things into my mouth without thinking about the carb content, or eating whenever I want to without worrying about insulin stacking, or hypos, or highs, or my exercise schedule, or the myriad of other things. Freedom, I miss you.

19. It was really hard to have to give up: Dr. Pepper.

20. A new hobby I have taken up since my diagnosis is: Yoga. I love it, it's an exercise that doesn't mess with my sugars, and I never thought I could get this strong or flexible, even though I still have a lot of room for improvement.

21. If I could have one day of feeling normal again, I would: Sleep in, have a Dr. Pepper for breakfast, swim without worrying that I'll pass out in the pool, and then eat some more sugary crap. Hey, I just have one day, right?

22. My illness has taught me:Everything in the body is connected. I know, obvious, right? But it's really brought home how every little thing you do affects the entire body. You can't just treat the foot without having it affect the brain, and vice versa. It's ALL connected, and always will be. Treat the person first. Also, moderation is crucial, as too much insulin or sugar will do horrible things to you, and this has become a metaphor for me for other aspects of my life. Live within reasonable boundaries, but not horribly constricting ones. Also, cocoa roast almonds are awesome. Atkins makes some peanut butter cups that taste just like Reese's, and some coconut bars that taste just like Mounds. I never would have known about them, and they make me so happy.

23. Want to know a secret? One thing people say that gets under my skin is: My aunt so-and-so had that. She died a horrible death. Gee, thanks.

24. But I love it when people: Listen, and get a little educated, and try to understand.

25. My favorite motto, scripture, quote, that gets me through tough times is: Be still and know that I am God. I love this song from Scrubs. Also, the poo one.
26. When someone is diagnosed I'd like to tell them: You are not alone. You can do this. And I would tell them about those Atkins bars, and carb smart ice cream mixed with diet root beer. Delish.

27. Something that has surprised me about living with an illness is: How much blood sugar affects my mood.

28. The nicest thing someone did for me when I wasn't feeling well was: Babysit my kids.

29. I'm involved with Invisible Illness week because: It's a good thing.

30. The fact that you read this list makes me feel: Glad you stopped by.

Yoda is Wise

2011-08-20T10:32:00.000-07:00

A friend of mine posted this on facebook. I love it.

At the Eye Doctor

2011-08-18T14:41:00.000-07:00

No retinopathy. Excellent.

No new technology. Dilation still stings, and it still sucks, and it still is unsafe to drvie afterward, and I still do anyway.

I did request a prescription for Latisse. I want sexy eyelashes, baby. I got one, (a prescription, not a sexy eyelash) and was told to call around to various pharmacies and see which one would be cheapest, since insurance doesn't cover this particular drug. (Answer: Target).

"Any other questions for me?"

"Nope. Just about my vanity and long eyelashes."

Then her voice got all comforting and soothing-like, "oh honey, you're not being vain."

Um, hello? I don't know if we have separate definitions of vanity, but I'm pretty sure wanting Latisse falls squarely under that umbrella. I'm OK with my vanity. I probably think this song is about me, too.

I use mascara. Other than cost, I don't really see the difference. "LOOK AT MY EYELASHES" is pretty much the message.

Then the technician pulled me aside and showed me her gorgeous eyelashes (and they were gorgeous) and told me to be careful with my mascara once I got the Latisse because excessive mascara use can break the newly long, lush lashes. I asked her which pharmacy she used, and she admitted that she gets her Latisse from Mexico. Hmmm....maybe I should take a drive....but Mexican pharmacies scare me, in a total I've-never-been-to-one kind of way.

And now, if you will excuse me, I will now go about the rest of my day, with "You're so vain" stuck in my head. My poor children.

Fictional PWD

2011-08-17T11:52:00.000-07:00

I read a book recently. It wasn't a good book, per se, (it happens when you pick up random stuff at the library) and I was about to put it down when it was revealed that one of the main characters was a T1 diabetic.

I was immediately riveted.

It was more accurate than other fictional diabetes stories, I mean, the terminology was there - she used Humalog and Lantus - but it seemed she was on a "four hour" system, and she shot up every 4 hours with Humalog. I don't work that way. I mean, I probably eat close to every 4 hours when I can, so maybe that's how she did it, but it seemed different. I think in terms of "meals" and "exercise", not specifically "time" although that certainly enters into things. (How long until I eat again? Can I go here without a snack first, yada yada) But a strict four hour shot schedule? Has anyone else ever heard of something like this?

(Every time she checked, she was over 200, so I don't know how well it was working for her, but you know, fiction and all. And at least the author knew what was high and what wasn't.)

She told NOBODY she was diabetic, it was like she was ashamed of it or something, even though she said she considered it like having blue eyes, brown hair, and a non-working pancreas. (Her fiancee knew, but they never talked about it.)

She almost went into DKA on her wedding day, and was concerned about ketones in her urine, and her bg reading of 400, and what it was doing to her unborn child, all of which is very accurate. And her description of feeling fuzzy, needing some water and to lie down, certainly describes feeling high.

Her mantra was: Control it, or it controls you. And boy, do I get that.

It just made me wonder how the author did her research, did she read about it, talk to people with it? I mean, it was a pretty good description of diabetes (except what's with the fierce secrecy? You can tell people without being a victim).

Fictional diabetics always fascinate me now. And when the writers are completely WRONG, it drives me nutso. How many people did that inaccurate info have to go through to get to the page/tv/movie? After all, this is where a lot of people get their picture of diabetics.

Maybe all the REAL PWD should get together and produce a TV show or two, write some books, and end up with a major hit blockbuster movie. Possibly with vampires. That would be sweet.

Once Upon A Time On Vacation...

2011-08-11T09:40:00.000-07:00

"So - if you're a twig, how come you have diabetes?"

Ah, the old 'it's a fat person's disease' come to town. I was happy to explain that he was thinking of Type 2, that there are many other reasons people get Type 2 besides weight issues, and that my disease (Type 1) is an auto-immune one.

"What does auto-immune mean?" Ok then, it means your immune system goes into overdrive and starts attacking things that aren't foreign.

"So, it's like AIDS then?"

Well, that's a new one. No, no it's not like AIDS at all.

Nope. Nothing quite like it.

2011-07-21T11:36:00.000-07:00

Nothing like a low blood sugar in the shower to make you think "Boy am I glad I exercised!" There's also nothing quite like it to make you rethink the necessity of leg-shaving and hair-conditioning, and get you to run through the house naked to get to the kitchen for those graham crackers spread with dark chocolate that you bought in a moment of weakness at Costco. Oh, and some milk.

I really love dark chocolate. It goes well with Diet Dr. Pepper.

Went to the dentist yesterday. I decided to pretend I was just a mannequin in a training exercise - "are you OK? Somebody call 911 - are you OK?" since that's basically how I was treated, with that stupid air thing left in my mouth as the hygienists chatted with another. But hey, my teeth are still doing fine. That office can't decide if they do x-rays every 6 months or once a year. They change their minds every time I go in. (No you don't need summer x-rays, OF COURSE you need summer x-rays.) Oh, the places we go because our insurance covers them. I don't feel like they're incompetent, I think it's more of a "right hand doesn't talk to the left hand" kind of thing, and I don't love it there, but hey, who loves the dentist? And seriously, can't beat a five dollar co-pay for these visits.

And on that note, I do believe I will go and finish re-reading Harry Potter 7, and maybe I will bolus for some of that dark chocolate-y graham goodness. Yes, I believe I will.

RESULTS! RESULTS!

2011-07-13T16:08:00.000-07:00

Ok the results are in and published for the Protege study, the one in which I participated. Conclusions? "Further study is warranted." Okee-dokee then. Good to know.

Link to MacroGenics press release:

http://www.macrogenics.com/press_releases-298.html

Link to the article through the MacroGenics website:

http://www.macrogenics.com/publications-141.html

My guess is that I was placed in N=106, which was a 6 day full dose - even though I went up for 2 full 2 week sessions. The first dose gave me a terrible rash (want to see?) and made my hair curly - I loved it! - and lowered my dosage considerably. The second dose just made me insane, which, let's face it, could be a strong placebo effect. Although, I did get somewhat of a rash then, too, but not nearly as bad.

Here's the first rash - after a few days of healing. Yeah, it hurt.

I can't wait to find out what I got. I wonder how long before I know.

Swinging from 55 to 255 - all in a day's work.

2011-07-09T20:35:00.001-07:00

Apparently diabetes doesn't want me to travel. It made that abundantly clear.

To which I say: Screw You.

In Which I Reveal Confidential Medical Information

2011-06-10T21:46:00.000-07:00

So, went to the endo yesterday. Reminded him that I was his favorite patient. He laughed and admitted that I was "one of his favorites". I bet he says that to eveyone who insists on favoritism.

Demanded stem cells. No dice.

Asked about a pump and a CGM. He said he was a fan of pumps for some people, but my control is good on the MDI's, so unless I REALLY REALLY wanted it....he didn't see a reason, and you know what? Shots are fine with me. They really are. The CGM, however, I do REALLY, REALLY want.

He said if I had more days where I woke up super low (like I did right after Easter) then he would definitely fight for me to get one. He also said he would only do Dexcom, not Medtronic. I told him that was great with me. So...do I give myself more insulin to have scary scary daytime lows and get a CGM? NO. Even the thought scares me, and I would never put myself at risk that way. But do you see what the insurance companies have reduced me to????

Speaking of insurance, I found out today that my deductible went up by $1000 (from 3k to 4k) on June 1st with no warning whatsoever. The fact that my daughter's ER visit in April would have COVERED that doesn't seem to phase them. I. AM. BITTER. I'm still going to call and whine at them on Monday, even though I will probably get lost in voicemail hell. (*please say your ID number* *sorry, I didn't quite catch that*)

OK, lab stuff - A1c - 6.3. I'm OK with that, although frankly, I like it to hover at 6 or below. My doctor was thrilled. My husband told me that if I didn't like it, then I had "something to work on for next time." I wanted to punch him in the face. But I didn't. Because he was on the phone. Also I love him dearly.

LDL - still really really bad, and at 196. HDL is up to 57, so that's good. Doc and I had the following conversation:

So, I'm going to put you on blah-blah-statin.

This in instead of the simvastatin?

You're already ON cholesterol meds? And these are your numbers?

Um, yeah. But I forget to take them half the time. That could be the problem. (GREAT with shots, terrible with pills.)

OK, I'm going to up the dose, and even if you miss a few, you should still see some benefit. I'll call it into Walgreens. Put your pills by your toothbrush or something.

All right.

I hate high cholesterol. I kind of think it's a fake problem, because bringing down cholesterol isn't necessarily reducing the number of heart attacks. (Also, my father in law just had a triple bypass and his cholesterol was perfect. My dad's had high cholesterol all his life but at 77, nary a twinge of chest pain.) But I digress, and I will take my pills like a good little girl. I was kind of hoping to go off them, though - I don't like the long term side effects reported. Guess THAT didn't happen.

And it was at that trip to Walgreens, where I decided to pick up my refill of test strips along with my new horse pills, that I was asked to pay over $200 for said strips since the deductible wasn't met yet. I asked them to hold them for me while I railed on my insurance company for a few days. They're cool with that. I'm still going to have to pay it, though - I can feel it in my bones.

Thyroid, CMP, everything else was "fine." Still waiting for the lab results in the mail so I can obsess over them and see what "fine" means. Hopefully I'll get them, I did ask the tech 3 times to send them, but that didn't work last time.

Ok, then - off to check my sugars, then swear at my monitor, wash my hands, and check my sugars again. Last night I shaved 50 points off doing that. How did so much "sugar" get onto my hands? I don't know - it's a mystery.

Linky Goodness

2011-06-07T14:17:00.000-07:00

Some thoughts to process -

HUGE fan of #7 on this article.

Also, I found this article very happy making and hope inducing.

Happy reading!

Oops

2011-05-27T17:59:00.001-07:00

I am tired of finding Starbursts in my pockets after they go through the wash, and I wish I had someone to blame besides myself.

That is all.

So I Didn't Quite Make It, But Hey.

2011-05-16T21:47:00.000-07:00

Well, so I didn't exactly post every day for diabetic blogging week. And I TOTALLY meant to, I swear. The other posts were going to be more interesting, too. Honest. But my life got very crazy, we brought down a 16 year old girl to live with us for about a month, and even though she's a friend of mine and I've known her pretty much her whole life, adding a teenager to your house takes some extra work. Plus I have to like clean and stuff so she doesn't think I'm a slob. Plus it's the end of the school year, and the number of events in May is insanely high. Plus my husband needs the computer at night.

There - did I give enough excuses to assuage my guilt? Probably. I didn't feel all that guilty.

On the plus side, the sugars have been fairly good - one reading over 200, (stupid hasbrowns that I forgot about when bolusing) but the rest have been really very very normal, so I guess adding a teenage girl to your life regulates blood sugars - who knew?

I'm also adding that I have Zumba for my Wii and it's very fun, but the public will never know my awesomeness at it. And by "public" I mean "anyone at all".

Oh, and gas prices suck. Which is diabetes related, somehow.

Admiring Differences - Yeah, I Got Nothing. But I'm Still Posting.

2011-05-09T10:53:00.000-07:00

So I'm supposed to blog about "admiring differences" in the diabetic world. And since I always do what I'm supposed to do, here goes:

*crickets* *staring at fingernails and wondering if I should paint them* *thinking about Diet Coke*

The thing is, I don't KNOW a whole lot of people with diabetes. A couple of them simply won't talk about the disease at all. Denial is so pretty! Pretty pretty denial! Yay!

And even though I started this a while ago, I have just started to find the D-Blogging world in an effort to somehow connect with people with the disease that changed my life dramatically. But let me say this - people that like to talk about diabetes are my friends. Even if we have nothing else in common and you like to torture puppies, if you want to share diabetic experiences with me, be it type whatever, or caring for a diabetic, or anything at all related, I will listen and talk with you. And I will love it. So here's hoping I can find more blogs that help. Here's hoping something I write helps someone else, even though most of it is boring numbers and whining.

200 is the new 100.

2011-04-29T14:40:00.001-07:00

Nothing like seeing numbers over 200 every day for the past 4 days to make me feel like a perfect patient.

2 of those were in response to crazy lows - I know I should eat 15 grams of carbs, wait 15 minutes, yada yada. And I do that when I'm in the 60s. (mostly) But at 39, and home alone, I am eating until I feel better. Screw the high.

And then 2 of those were before I went to bed. I guess pepperidge farm cookie carbs require more insulin than the package dictates. (4 cookies is 22 grams - WHATEVER). Also, I was feeling pretty good from the knowledge that I was honeymooning.

Conversation with self: Hey, still honeymooning doesn't mean you can eat whatever you want. Your c-peptide levels are lower, and honeymooning diabetics still need to manage, you know. Self (replying): Duh. I knew that. Don't know what YOU were thinking.

Last night - no cookies, but apparently panda express sneaks more sugar than I thought. 210 before bed. Eh, wait a while, see what happens. Oh, hello an hour later, let's see what sitting here reading and not moving at all has done to my sugars. 245. Crap.

Conversation with self: DUDE. CHECK nutritional info on-line when you can. You would have dosed more, and avoided this. Self (replying): I KNOW that. I don't know what YOU were thinking - you seem to be losing brain cells at a rapid pace lately.

And so it goes.

As Promised ....NUMBERS! YEAY!!

2011-04-27T11:46:00.000-07:00

A1c - 6. Awesome. I was really surprised at this. I thought for sure it would be at least 6.5. So I was thrilled.

C-peptide levels -- started out low again, and then at the 30 minute mark it kicked in and by the 180 minute mark it went up to 2.1, which is in the normal range. NORMAL. (6 months ago it was highter, but hey). It's consistent with what it's been doing up till now, starting out low and then my pancreas wakes up and starts squirting out the good stuff. If only we could get it to squirt out the good stuff EARLIER and CONSISTENTLY.

So my original thought that I wasn't honeymooning anymore couldn't be more wrong, and I am thrilled about that. They told me that obviously the onglyza wasn't doing anything for my c-peptide levels, and I could go off it, at which point I told them I had taken myself off it anyway, and gone back to 10 units of Lantus, since it really did seem to be messing with me.

And then, yesterday my fasting sugar was 43. Bad News Bears. Fortunately I had some toffee, plus some other Easter candy leftover. I had too much, and swung up into the 200s, but still, it was tasty. I thought it was just an anomaly, and then today I started getting really dizzy shortly after I woke up only to find myself at 39. I truly thought I would pass out - and who knows if I would wake up? It's scary to be very low and all alone. (Yes, I wake up after my kids go to school. I'm VERY lazy. Did you not know this about me?)

At least I still have hypo awareness. That's good. And lows like that might make getting approved for a CGM much easier. Still, I hate them. I think I might lower my Lantus again, which would be kind of awesome actually. We'll see what the doctor says.

So there you have it! Fairly good a1c, and still honeymooning! What was I whining about again?

I've Got a Theory...

2011-04-25T11:06:00.001-07:00

...it could be demons. Wait, no that's not it. Just had to throw in a little Buffy magic there.

No, my theory is this: onglyza was what was messing with my sugars. Let me explain. No, too much. Let me sum up.

I couldn't figure out why my sugars were so great for my diary. I happened to mention to my husband that I was being a horrible patient when it came to my pills. (Insulin, I don't forget - pills, yes. If I'm not home at dinner, that's it. Pills stay untaken.) He pointed out that I wasn't taking those pills a couple of days before I was doing my diary. I mostly dismissed the thought, because really, there's no reason that would be it.

Far be it from medication and diabetes to be reasonable.

I started to be a good patient again and taking all my pills the day before I went in, and the next night the sugars were a little wacky again. So I decided to do an experiment (I mean, hey the pills were experimental anyway...) and went off them. Fabulous sugars in the house. I have even dropped my Lantus back to 10, and will see how that goes. (I've seen a few lows with no pills and at 12. I fought to get down to 100 with the pills and at 12.)

I never thought that would be it because my sugars were crazy before I went on it. It didn't start the day after I took them or something. No obvious linkage. But now I think I was probably mildly sick, and then the onglyza messed with me. Who knows?

I've got a theory - it could be bunnies.

Silly pancreas, tricks for are.....NOBODY. STOP.

2011-04-22T12:52:00.000-07:00

In the diabetic version of "everything went to hell until I called the doctor" my sugars have been wacky until I had to document them for my last trip to Utah for the study. And then, they decide to behave. Not only behave, but behave BEAUTIFULLY.

91. 87. 109. etc, etc. (The highest I saw during the 3 day diary period was 126. OOOOH SOOOO HIGH!!!!) (Not really).

And so they looked at my sugars and couldn't tell me what to do to adjust, because obviously, I'm doing everything perfectly. And while I am, of course, practically perfect in every way, it made me sigh and laugh at the same time.

I will get the official results in a few days, but the test went as follows: No Lantus, No Novolog. Fasting sugar: 112. Drink given (ah, vanilla Boost, how I long for thee...) 2 hours into the test - 281. Yeah, bad. 281 is the highest sugar I've seen since diagnosis. (6 months ago MMTT 2 hours into it was 245.) It really confirmed to me that my pancreas is dead in the water. One hour later - 219. Huh. Something brought it down. One hour after that - 165, and a half hour later, I was at 134. So it would appear I have some pancreatic function after all. Or I did that day, anyway. This makes me HAPPY. VERY HAPPY. If only we could get that function to kick in a little EARLIER, that would be fabulous. It would also be "non-diabetic" so, you know....

Then I had a "physical exam" which basically consisted of the doctor telling me how much better I looked than when I first began, "so much more color in your face!" and he takes full credit for that, and seriously, he's said this every time he's poked his head in when I've been there (exams aren't standard every time I go). "Doesn't she look better? Do you remember how she looked a year ago?" which kind of translates to "you looked like a steaming pile of dog poo when I met you. I congratulate myself that you no longer do so."

I left, ate lunch and dinner (with appropriate boluses) and my sugars didn't come down at all, and I fell asleep in the 160's. SEE how my pancreas knows when I'm in the office? It's kind of a smart little organ, but instead of focusing its efforts on messing with me, it needs to focus its efforts on producing beta cells, although I'm sure messing with me is far more fun.

So no more study for me. All done. I can't believe I started this 2 years ago. Wait, yes I can. The results will be published in June, and then they will unblind everybody, and they can tell me whether or not I got the drug, and in what dosage. I was not aware of this, but apparently of the 3 "arms" that got the drug (1 placebo "arm") there were 3 different dosages. So that'll be interesting. I wonder if I'd gotten more drug, if I would have gone off insulin as they had 5 of 14 patients did. And yet it was stopped because it was "ineffective". Whatever. It was pulled because it was expensive. Period.

But that way lies craziness. I got what I got, and unless I have a time machine and a way to break into the randomization process of drug studies, I can't change it.

I'll have a new a1c soon, and official C-peptide levels, which will result in another boring numbers post. I'll bet you're all looking forward to that with baited breath. I know I am. (The thing is, I really am. This is my body we're talking about, you know.)

Eh.

2011-04-09T15:23:00.000-07:00

Upped my Lantus to 12. Novolog went from 1:20 to 1:15. We'll see how this goes. I was tired of seeing 180s pre-meal. I was tired of seeing 180s - period. More insulin has really helped - go figure. What a concept.

Of course, yesterday I was 200 for no reason I could tell. Whatever. And today after the same breakfast I eat every day and always see good post meals, I was in the 170s at lunch. Again - whatever. Who knows anymore?

I want a pump and a CGM. I'm going to ask for them in June at my next endo appointment. I'm pretty sure I will obsess over the CGM constantly. I'm looking forward to it. :)

I Don't Know HOW

2011-03-28T10:29:00.000-07:00

I have decided I officially don't know how to be a diabetic who's not honeymooning.

(And no, I don't know that for a fact, but things have been all over the map, I'm not sick, it's the only explanation I can come up with, and I'm pretty sure the onglyza is doing nothing.)

Yesterday I had a low after I went walking, which I wasn't too surprised about, I walked longer than I planned to, and it was right after dinner, so my insulin was still very much in force.

So, I did what you do when you go low. I ate carbs. Came up nicely to 99.

An hour later I was 175, because apparently, you raise your blood sugar, and it just keeps going and going.

I'm tired of correcting - I'm worried I'm going to run out of needles before I can refill them. I guess I just have to learn to do this whole thing all over again - find the right combination of Lantus and the right ratio of Novolog/carbs. Fun times, my friends. Fuuuunnnnn tiiiiimmmessss....

Please Tell Me Why

2011-03-27T14:43:00.000-07:00

Fasting this morning was 132. Not the best, but I decided not to beat myself up over it. But I was in a hurry, so I had eggs for breakfast. Eggs. No milk, no toast, no fruit, just eggs. And so I had no insulin.

At lunch I was 154.

Why would eggs cause my sugars to rise? Things have been so wacky lately, blood sugar wise, I'm fairly confident the honeymoon is over. I will find out for sure on Apr. 21, when I go in for my last visit for the study, and a mixed meal tolerance test is done. I'm kind of sad about it, but hey, I couldn't honeymoon forever, I guess, and it has been over 2 years.

I really do want to know, though. Why was I higher at lunch? Also, I think my a1c is going to suck. I'm not looking forward to it.

Seriously?

2011-03-24T10:49:00.001-07:00

I am way too young and have had this disease way too short a time to be having neuropathy like this. Fingers, face, toes - burning, tingling, zinging weirdness.

Fasting this morning: 157. What the??? (For the record, I went to bed at 116)

I have worked out every day this week. If that's not helping, I am going to quit and stare out the window for the rest of my life. I mean, if bad sugars happen regardless of what I do, why should I do anything? Ah, fatalism.

Also, McDonald's tried to kill me by serving me regular Dr. Pepper instead of diet. I was mad, but boy that sip was tasty. If I ever get to choose my last meal, because, you know, I kill somebody, I am having lots and lots of sugar.

For the Record

2011-03-10T11:52:00.001-08:00

My sugars are behaving beautifully again. I do not know what caused them to freak out for those couple of weeks -and I have discovered that nothing puts me in a worse mood than seeing 180 as a fasting - but they're all back to "normal" now. My theories:

1. I WAS mildly sick and didn't have other symptoms, but my body was fighting something, causing the sugars to rise.

2. The honeymoon was ending but putting me on onglyza DID cause a c-peptide response, causing better control.

3. The disease was just reminding me that often it doesn't make sense.

I'm going with #1, with a dash of #3, but you never know. I guess it's a good thing I didn't up my insulin after all.

In other news, Breyer's carb smart vanilla ice cream and diet root beer actually makes a pretty decent root beer float. That's exciting.

I still hate my One Touch monitor, but I've stopped throwing it across the room and swearing at it. Baby steps, people.

In Which I Use a LOT of CAPS

2011-03-02T15:05:00.000-08:00

About a week ago, my sugars started going wack - a - doo. And by "wack - a - doo", I mean "high for no discernible reason." Middle of the night- 230? Wha? I thought maybe I was getting sick, but so far, no symptoms of sickness have manifest themselves.

So today at the endo I asked him if I should change insulin usage, and he said no, because I would go too low. He didn't run an a1c because I had one in January. Dude, I really think I need just a titch more, but apparently pre-meals in the 120's (and, um, 160s!!) don't bother him too much. I do like him a lot, but he is SO hypo-phobic, and I'm a little hyper-phobic. (post meals are too high!) He's seen too much, I think, and so he is very reluctant to up insulin levels. I think it might be the honeymoon ending, but that just makes me sad.

And then - let the experimenting begin! - he put me on a type 2 drug "onglyza" to see if that helps stimulate a c-peptide response. We shall see what we shall see.

He was FASCINATED by the fact that I went hypo on antibiotics. He had never heard of that before, although he said some RA patients respond to antibiotics for no reason that the medical community can think of - they just do, but he hadn't heard of any diabetics responding that way. He is pondering it, I guess.

In other news, my insurance company "forced" me to switch monitors, and I left my Freestyle (which I had grown to really like since they switched new test strips) to One Touch. I tried to test my blood when I got home. No dice. Error, error, error, error, ERROR!!!! The error message translated - the test strip didn't have enough blood. I thought it was possibly due to the fact that I couldn't feel the lancet poking me at all. So I called them, and they "walked me through testing my blood" because apparently I am a moron who doesn't know how to use a monitor, but in the end, they are sending me a new lancing device. The worst part is - they want me to CHANGE LANCETS EVERY TIME!!!!

Them: It cuts down on infection to use a sterile one every time.

Me (in my head) : It makes you more money for us to use one every time.

Me: (out loud): It's a pain in the butt, especially when you have to test 6-8 times a day. It's REALLY annoying.

Them: Well, you do what you want, but this is what we recommend.

Me (in my head): Well, duh, I will do what I want, but if they don't POKE ME, it doesn't really matter how many I go through, now does it?

Me (out loud): Are these cheaper or something, because these are not the same lancets that were sent to me when I got a free One Touch monitor a while back.

Them: We changed them so there is less discomfort.

Ah, less discomfort. What a noble goal. But seriously, poking yourself should hurt a little, I mean, we're trying to get BLOOD OUT, not get ERROR MESSAGES DUE TO LACK OF BLOOD. Of course, multiple error messages just means I have to use more test strips and lancets, which probably isn't their goal at all. I must have gone through 6 just trying to get one reading. That lew lancing device better be a LOT better. And since I haven't hit my deductible yet, that little blood sugar reading probably cost me roughly 10 dollars.

Seriously, my old monitor, I just changed the lancet when I felt it getting dull, every couple of days. I seriously filled the scrip twice or something absurdly small, because I got 100/box. *whine* I just want to keep using my old monitor - stupid insurance.

I think I have issues with change. POSSIBLY.

I also am forced to do mail order prescription if I want to stay on Novolog. Which isn't a big deal, but is a pain in the tuckus for everyone involved, except UHC, I guess.

Also, this week, I saw the gyn (Mon) and had a mammogram on Tuesday. It's been a medically intense week. Maybe I'll hit the chiro tomorrow just to round it out.

Tasty

2011-02-11T16:33:00.001-08:00

I ate a chocolate croissant today at lunch. (not FOR lunch, just AT lunch.) Well, half of one. My husband brought home samples from a bakery and I kind of NEEDED it. Apparently, though, I did not guess right on the amount of carbohydrates, because an hour after lunch I went low.

So then I HAD to eat the other half.

Bummer.

Dream A Little Dream

2011-02-07T09:50:00.001-08:00

I've really been getting into this whole exercise thing lately, and Jillian Michaels has been on my TV a lot. Last night I tried her "yoga meltdown" which was less "breathe and stretch, just go as far as you can" and was more "Rep it out! Come on! You can do this! Sun salutations - FASTER!" which was a little jarring when it wasn't what I was expecting. It was still a good workout, though, and hey, expectations can shift. It's all good.

Except then last night I was dreaming that I was hiking with Jillian and some other nameless, faceless people, when we reached our destination and I asked Jillian for some juice because I was shaking pretty badly and thought I was going hypo. She of course reached for the juice, and poured me a glass, but I couldn't get to it, because, you know, it was a dream. Since I couldn't get the juice, I tried to get to the candy in my pocket, but it too was not cooperating. (You know those dreams where you have to pee in your dream, but you can't go? It was like that.) Then I woke up. I wasn't still shaking, but my heart was racing, and I thought I had better check my sugars just in case my body was sending me a message. Yep. 60s. This time the candy was available, though, so that was comforting.

This is the second time I've had a dream when I'm low. I wonder if that happens often to other people.

So - doing a hard workout before bed - not the best idea in the world. I often do yoga at night, it's very relaxing, but I suppose I'll have to stick with the calming, soothing kind. Jillian can wait until morning.

Still Alive. Take THAT, Nature!

2011-01-28T16:24:00.000-08:00

2 year anniversary has come and gone. I'm still alive. Bummer that it costs so much to keep me that way, though. My insurance keeps sending me letters about how Humalog is cheaper than Novolog. I'm not super comfortable with switching insulins though, so too bad, baby.

Also, ONCE in a while, can I Google a disease and NOT see diabetes as a risk factor? Just once. I guess I just need to stop Googling.

In other news, my dental hygienist's assistant (oh yeah I am a priority there, baby) hates that I have wisdom teeth. "They're so hard to floss." she whined as she violated my mouth. Sorry, honey, I should have thought of your job when I decided not to have them pulled. How inconsiderate of me.

Latest Utah Trip

2011-01-12T11:29:00.000-08:00

First of all, the weather was the worst I've ever seen it. The inversion and the smog was so bad, you could barely see or breathe, with warnings posted everywhere (DRIVE LESS) and people telling you not to go outside if you don't have to. I'm sorry, but how bad does the summer have to be before you say "16 degrees with no breathable air is better than this."?

In other news, the a1c was 6. It's been better, but that's not bad. Not bad at all.

Warning. May Cause....

2010-12-07T14:12:00.001-08:00

(Back to 10 units of Lantus. That lasted a week. I really think the z pack lowered my sugars. I have no other explanation.)

Years ago, I heard a famous nutritionist (I know he was famous because it was on TV) - I can't remember his name - say something to the effect of "if the benefits of exercise could be put into a pill, it would be the most prescribed medication of all time. Just think of it as a pill that takes 10 minutes to take." (or something to that effect.)

So, like any medication, exercise has its side effects. And so, I give you the small print:

Side effects of this medication may include, but are not limited to:

- increased thirst
- increased hunger
- weight loss
- weight gain
- fatigue
- irritability
- lowered blood sugars
- raised blood sugars
- muscle pain
- joint pain
- injury
- dehydration
- nausea
- increased sense of "self-righteousness"
- homicidal thoughts, often directed towards the trainer
- may induce thoughts of entering "marathons"

Please be aware that all of these side effects are considered "normal" and you should continue to take this medication as dierected - i.e. every day for the rest of your life.

Wouldn't it be great if they had to list these on commercials for gym equipment/memberships and exercise DVD's the way they have to for all the medications they promote? Nobody would do a leg lift ever again.

News Since Thanksgiving

2010-12-01T10:36:00.000-08:00

For a couple of weeks, my ear and throat had been hurting. Ear infection. Oweeee. No wonder babies cry when they get these. I went to a Walgreens walk-in clinic and they prescribed a z-pack of antibiotics the day before Thanksgiving.

(For the record, I am now a fan of walk-in clinics at Walgreens for minor medical problems. SO much easier.)

Thanksgiving was easy, the sugars were really stable. And then, that night, the lows began. I was really surprised, because hypo events are fairly rare for me. And I kept going low for a few days for no inconceivable reason. I wasn't even exercising, because, hey...Thanksgiving. Family in town. It was very weird, and eerily similar to a few days after the first infusion.

I couldn't think of anything that was different, except for the antibiotics. I couldn't find anything online that said antibiotics lowered blood sugars, but maybe they do? I briefly started getting excited that I was getting a bit better. But you know, if a z-pack cured diabetes, I'm pretty sure people would know about that.

And so, I (shhhh!!) lowered my Lantus dose once again down to 8. It's been a few days, and the sugars have been fine so far, so that's good, I guess. I'm a little cautious, because last time I went to 8, I ended up going back to 10 pretty soon afterwards. The control was just SO much easier at 10 - premeals below 100, instead of btw 100-120. (Not to mention the a1c was better.)

I'm going to wait and see. Pretty much par for the course with this disease, I guess.

Diabetic Blogging. Cool.

2010-11-09T12:49:00.000-08:00

So apparently it's dblog day. I really need to get more involved in the diabetic blogging community - but somehow this blog doesn't like me to add links. I keep trying, just to people I know, (non-diabetic) and some diabetes blogs I read occasionally. It always freezes - but I will admit I haven't looked into it too much - I just go "AAAA! It froze again!" and move on.

So the topic is: 6 things I wish people knew about diabetes. It will be Type I specific because that's what I deal with. Here goes!

1. I DID NOT CAUSE THIS. IT COULD NOT HAVE BEEN PREVENTED BY A BETTER DIET, MORE EXERCISE, ETC. I get asked by a lot of people if I used to be fat, and that's what caused this. Nope. Just "lucky". Even with Type 2, there is often a genetic link, and while some of Type 2 is definitely lifestyle, that never tells the whole story. NEVER. Do not assume someone has diabetes because they were lazy or ate too much crap. We don't like it, and it's not true.

2. I am thinking about diabetes basically, all the time. That's what we do. It's not always in the front of my mind, but it's always there. I have to plan my meals, my exercise, pretty much everything around my blood sugar. If someone says "hey, let's go here" I have to think about how that disrupts my routine. Will it mean I have to skip a meal? If so, I better bring plenty of snacks - does it mean I will be exercising more? If so, I have to adjust my dosages accordingly. I don't mind disrupting my routine, and I'm happy to "go here" with you, but I have to think about it. It's annoying.

3. The enemy is not sugar. It's ALL carbohydrates - and not all carbohydrates are created equal. Handing me a piece of "sugar-free" cake means you're giving me something filled with refined flour and Splenda. Refined flour = carbohydrate = sugar. Sugar= I need insulin to eat that. People don't get this, including medical personnel - I've been in the hospital where they gave me food but wouldn't let me take insulin because they wanted to administer all my meds. Fine - this meal would require 2 units - can I have 2 units of Novolog please? They wouldn't give it to me, either, because my pre-meal sugars were fine. Well, OK then. I can't eat this. Carbohydrates require insulin. Period. Even fat and protein eventually require insulin - but not as quickly.

4. Yes, technically, I can eat what you eat. But I don't. This will vary from person to person, of course. Some diabetics will bolus (take extra short acting insulin) for whatever. I find that most desserts do not warrant the pain in the tuckus it requires to eat them. I have to give myself an extra shot, or take extra at the meal and then make sure I eat dessert while the insulin is still in effect, and then monitor my sugars carefully. If I go too high, I have to give myself another shot later to bring them down, or if I gave too much insulin, and go low, I have to eat fast acting sugar (candy, juice, etc.) to bring it back up, and then hopefully I didn't eat too MUCH candy and send it too high, causing a horrible cycle. But yes, I can do that. I've often heard people say "so what if you go high - can't you just give yourself a shot and you'll be ok?" Well, yes and no. Because the blood sugar swing is bad, and I hate the way it makes me feel. Going high and then dropping quickly is not a fun sensation. Going low is terrifying. It's so much easier - for me - to pass on the brownies, thank you.

5. Things that raise blood sugar: too many carbs, not enough insulin, stress, adrenaline, certain medications, hormones, sickness, the list can go on and on. One thing I have definitely learned is that nothing in the body exists in a vacuum. Everything is connected. Things that lower blood sugar: insulin, and exercise. Exercise is great because it makes you super insulin sensitive, they call it "invisible insulin" and it can help you control your sugars better, as it continues to boost your insulin sensitivity for hours afterwards. (Some people can go high with exercise, though, and then drop. It's weird.) However, since exercise can lower sugars quickly, I must be careful about when I exercise (I try to do it 2 hours post meal, if possible) and how much I exercise, and pay close attention to how I feel while doing it.

6.This disease makes no sense. We try, and try, and try, to force rationality onto it, but a random high or low reading can show up when things have been completely normal. It makes me really really mad, since I am working my butt off to keep things as close to normal as possible, but nope. Weirdness. I am trying not to let the bad readings tick me off too much, and I am failing miserably at it. However, I am always willing and happy to talk about it. Questions do not bother me. In fact, you might get an earful when you weren't looking for one. I am still relatively newly diagnosed, so there's still quite a bit I don't know, (i.e. I don't know a lot about pumps - I've never had one) but I like to talk about it - let people know what it's like living with a disease like this.

And finally - if I ask you for candy - give it to me NOW.

There are so many other things I could talk about, what going high feels like, what going low feels like, the emotional adjustment, the increased doctor's visits, the cost, but hey. I've got to stop somewhere, right? Happy diabetes awareness month!

(Other blog posts can be found here.)

Big Pharma - helping me - but screwing you over.

2010-10-27T09:28:00.000-07:00

Got the results from the mixed meal tolerance test in Utah. A1c is 5.8. Awesomeness. C-peptide started out really low, but it went up to 2.7, which is really quite good. Honeymooning 21 months after diagnosis? Also awesomeness. My pancreas still works, baby, and even if it's not doing its job completely, I'll take what I can get.

The big news, though - the day I went up there, was the day the office learned that the drug company is pulling all studies of this drug. END. NADA. NOBODY ELSE GETS IT. I did Protege, which had already stopped enrolling because it was full, but Protege Encore? (same drug/same dosage) OVER. Subcue? (drug give with needles instead of infusion) STOPPED. Everybody was in complete shock, they couldn't figure out why. The official reason is that the efficacy goal wasn't reached.

HOW could this drug not be effective? The office I go to has the largest enrollment, and they've seen incredible results. 3 people off insulin, snacking on Snickers bars. Nobody's Lantus dose is over 12, and they've had many people drastically drop - like from 30 to 6. And yes, most people stay on insulin, but the main goal of the drug was to drop insulin usage and extend the honeymoon - which was totally happening. Maybe other sites were teaching their subjects differently - i.e. saying they didn't need to manage their diabetes, see if the drug does that - I don't know, but saying the drug is ineffective just blows my mind, and everyone else working with it.

It's also supposed to decrease the number of lows, and you want to know how many hypoglycemic events I've had in the last 6 months? TWO. And both times, I know the reason why (more exercise than usual). I am no longer terrified of going low - I mean, I still carry candy, but I hardly ever use it. That right there makes it worth it.

You know, in the beginning, I would Google all the time, trying to find people that were in the study, see what happened to them, and I would find little snippets here and there, 100% positive. I still do that, actually. And I did see on one board somewhere (and I can't find it now, which is driving me crazy) a comment from someone that struck me as paranoid. It was when Eli Lilly bought into the study (it used to just be MacroGenics, and it happened while I was enrolled) and he said something to the effect of "Eli Lilly always buys into Type 1 studies that look promising, says they aren't effective, and then kills them. Just watch. That's what will happen." And spookily enough, here we are. Eli Lilly was in charge, declared it ineffective, and killed all the studies with teplizumab.

It's almost enough to make me a conspiracy theorist. I mean, the dude predicted it. The press release (found here) says it was an independent committee, but hmmm....

(The office also found Eli Lilly much harder to work with. Reimbursements for travel and other payments started taking much longer to get.)

I don't know why a drug company would kill it, though. I mean, most people don't go off insulin. They still need the test strips, the needles, the insulin, the money makers for the drug companies. They just get an additional drug, which you think would be win/win for the drug company. Make diabetes MORE expensive, but with the added benefit of extended honeymoon/fewer lows/increased quality of life for the diabetic. But the whole thing stinks of money somehow - maybe they wouldn't get people to pay for the drug, after all, every doctor I've ever mentioned to that I took this, pauses for a second and says "that has got to be one expensive drug." So possibly they were worried they'd get it approved only to have it sit on the shelf as insurance companies and patients opt not to pay for it.

The whole thing just really really bothers me. I don't like the feeling of not trusting the data. What other drugs were stopped in the past and/or will be stopped in the future? I don't like that nobody else will get this drug, when I would totally recommend it to anybody newly diagnosed. I don't like feeling like the search for a cure has taken HUGE steps backwards, all because of the almighty dollar.

But hey, MY numbers are good. I'M lucky, I guess. But there should be more than just a handful of us.

Things That Make Me Say "Ouch"

2010-10-18T14:45:00.000-07:00

I got my pneumonia shot (finally!) on Saturday. It still hurts. That was one heck of a needle, too. I had no idea.

My new exercise "regime" is to do something every day so that I'm a little bit sore the next day, just to remind myself that I'm alive, and I did something good for my body. Does being sore from the shot count? I'm going with "yes." (and "no.")

The only problem with the exercise "plan" is that I'm having to do more and more in order to feel the effects, and I try not to think about how eerily similar that is to alcohol/drug tolerance.

I guess it's good because it means I'm getting stronger, and it makes me work separate areas of my body, but it's bad because well, exercise isn't all that fun to do, even if it DOES actually make you feel better afterwards and helps your sugars.

And on that note, I have a DVD to work out to before the kids get home from school. Since my arm hurts, I think I'll do the ab portion. It has never failed yet to get me sore.

So, today.

2010-10-13T20:29:00.000-07:00

I was reminded today of two things:

1. Pizza is the devil.

2. Exercise really matters - even in small amounts. Sitting around reading all day is not good for your sugars. Especially when you're reading a book about end of the world type disasters (thanks Andi!) and you're pretty convinced that if anything like that ever happened, you would die early and leave your family to deal with it themselves. Which would suck. Well, for them, anyway.

More Monitor Musings

2010-10-07T11:16:00.000-07:00

Ok, so I've been frustrated with my monitor at times. I asked my doctor about it, and well, got the same answer everyone elese gives me - they're all basically the same, and FreeStyle's data is pretty good, so...I stuck with it. I still had a bunch of test strips, after all.

Freestyle has these new test strips now, with a butterfly on them, and I like them. They take less blood, they register more quickly, etc. But I noticed since I switched, my sugars have been a little lower. Coincidence?

This morning, my fasting sugar was 73. Hmm...I felt a little low, I guess, but nothing major. (Not that 73 is super major, but eating is definitely warranted at that point.) I still had one pack of old test strips left, and I mean 'old' as in 'filled last month' not 'old' as in 'past expiration date'. So I tested with that, and it said 85.

So..maybe the old test strips really did run a little high. Who knows?

In other news, I will be headed to Utah in a couple of weeks for another Mixed Meal Tolerance Test to see if I'm still making insulin. My fasting sugar has to be above 80. Maybe I'll bring my old strips, just in case. :)

MORE: Pre lunch: OLD: 98. NEW:80. Ummm.....

And So I Add Another Pill

2010-09-06T10:50:00.000-07:00

Had a doctor's appt. last Monday. He still loves me. He ran some blood tests.

Thyroid is good.

Vitamin D level is good.

Cholesterol - Bad. HDL and triglycerides are awesome, but that $%* LDL - crept up to 191. That's pretty dang high. My doc is very cautious about treating cholesterol, but that number got his attention.

Phone calls from your doctor on a Saturday morning are never good. Ever noticed that?

He was sweet, though, and said "It's nothing you are doing. Your body just makes LDL because of your family history." It's like he read my last post or something!

And so last night I began a low dose (10 mg) of simvastatin. I really wanted to avoid cholesterol meds, but I guess that was not meant to be. Hopefully it can be short term use - I don't know if that's normal, but it is something I'm going to ask for.

Plus, it wasn't a fasting cholesterol. I had eaten breakfast already. I thought cholesterol had to be a fasting number?

I'm a little bummed. More evidence that my body doesn't work all that well.

Don't Blame Me OR It's Been a Bad Day

2010-08-25T15:42:00.000-07:00

Had a high reading before lunch today. Ticked me off for 2 reasons:

1. I had no symptoms of being high. There often aren't any, which is why I do NOT understand diabetics who don't test. "I can just feel it." Well, maybe they can. Everyone is different, after all. I can only sometimes "feel it", meaning I am either peeing every 2 minutes (OK, I must be high) or I am unbelievably exhausted.

Of course, fatigue can also mean I'm going low. It can also mean I'm just tired for a host of other non-diabetic reasons.

I hate tiredness. I never know what the "deeper meaning" is. It's like some obscure book in the Old Testament. Or Yoga.

2. I had no REASON for being high. I ate nothing different, did not change my activity level, nothing. I finally chalked it up to the cold I'm fighting and the fact that I'm pre-menstrual. (What? TMI? Welcome to blogging, people.)

SO. I had high blood sugar because viruses exist and I'm a female with a working reproductive system. THESE THINGS ARE NOT MY FAULT.

And yet, if I ever do have serious complications, I know there will be many health care workers (not all of them, but many) who will write it off as something I did or did not do. I know this because I've heard them. I've heard Dr. Oz say he hates operating on patients when he knows their heart attacks are self inflicted and could have been prevented with a better diet. It was a Type II diabetic. I stopped watching Dr. Oz.

When I first got diagnosed, my PCP sat and told me about people 10 years older than I am who sit in his office and complain and cry about how awful this disease, and how much pain they're in, when they "have noone to blame but themselves. " He said this. He was trying to motivate me to control my sugars. He is no longer my PCP.

My feet and legs have been burning lately. My A1C's have been fabulous. And yet, nerve damage. It's the disease, not me.

And so, today I whine. This disease sucks. Did I mention the PMS?

My Current Obsession

2010-08-18T10:33:00.000-07:00

I have to shout it from the rooftops.

These are unbelievably good. Like, to die for good. No more carbs than regular almonds. Super tasty, though. Also - almonds - good for you and your cholesterol. (If you're expecting super sweet, though, it's not going to happen. These are not chocolate covered almonds. These are almonds roasted with cocoa powder.)

These are also very good. If you're into cinnamon instead of chocolate. How the 'brown sugar' thing doesn't add to the carb count, I'm still not quite sure. But still. Tasty. Mmmm. And again - almonds good. Cinnamon good.

Can you tell I eat a lot of almonds? They are my go-to snack, and lately, I've been getting tired of the regular ones.

These are unbelievably disgusting. I will admit I've steered clear of most sugar free candy, in general, because sugar alcohols do affect my blood sugar a little, and you know, it's not usually all that tasty. But I saw a small packet of these at the Target check out, and I LOVE Werther's candy, so I thought I'd give it a shot. NASTY. One piece in my mouth, and then I had to spit it out and throw out the box, lest I be tempted to try it again. Ew.

And there you have it. I'm now off to see if I can get these things cheaper. Peace out.

The Results Are IN

2010-07-28T14:28:00.001-07:00

5.6 BABY! YEAH!!!

Just Reporting

2010-07-20T21:51:00.000-07:00

Happy to report:

No diabetic retinopathy.

Teeth are still looking good.

Neck pain is decreasing, although not completely gone. I still have a few adjustments to go.

Seriously, though, leaving the eye doctor with my eyes dilated with that, I thought "I should not be driving. This is not safe." Of course I totally drove anyway.

So proceed with caution when driving near eye doctor's offices. You never know who they just set loose on the world.

Also, getting your teeth cleaned while your eyes are dilated is a little bit trippy.

What the?

2010-07-15T17:15:00.000-07:00

OK, so I got a new monitor "free" in the mail. I've only ever used the Freestyle and I wanted to try a different one out so I filled out the offer. It came today, and so I tested my sugars. Voila:

NEW MONITOR (One Touch): 77.

OLD MONITOR (Free Style): 92

Um. Yeah. I have no idea which one's right. So I tested again.

NEW: 76
OLD:88

At least the new one is more consistent. But still. I thought all monitors were supposed to be basically the same, and whichever one you like, that's the one you use. What do I do now? I know! I'll order a third one, and a fourth, and drive myself insane! Doesn't that sound fun?

I do remember joking that I wanted a new monitor that would show me lower numbers, though. I guess I got one.

And if my FreeStyle monitor really does run about 10 points high, then hey, my sugars have been better lately than I thought. Maybe OneTouch runs low. Maybe they're both about 5 points off. Maybe I should obsess about it some more.

Seriously, though, is there someone I can call to ask about this?

A Non Whiny Post

2010-07-14T20:02:00.001-07:00

My sugars have been SOO beautiful lately. I thought I should mention that, since it seems like I'm just on this blog when things are going badly, and I'm whining a lot. But really, the control has been so easy, and I'm grateful. I have another a1c next weekend, in Utah, as part of the study, so we'll see.

In other news, my neck hurts, like, really a lot. So I've started seeing a chiropractor, which is new. (Great! Another medical professional!) I hope he's not crazy. So far, he seems to be fine, but the second he tells me he can cure my diabetes with raw foods or supplements, I'm out of there. He took an x-ray, and he told me a couple of vertebrae in my neck are twisted - which seems to be something chiropractors say, according to Google. Maybe they are twisted, I don't know. So basically, I'm seeing if it helps, and if it does, great, if not - I'll stop going. Done and done.

The insurance covers it, so it's not out of pocket. Yes, you can blame me for high health care costs. I have become a far more expensive person to keep alive in the past couple of years. If he doesn't help, I guess I go to my primary care and complain of "neck pain." I've heard they love vague symptoms like that.

School starts on Monday (yes! Freedom!) and come Tuesday I'll hit the dentist, the eye doctor, and the chiro. Friday it's the study and the a1c. You know, it seems like this body needs more maintenance than my car and my house put together.

In conclusion, I love Crystal Light popsicles. They make summertime in Arizona a livable place for diabetics.

Psychological Tricks - Yes or No?

2010-06-20T18:35:00.000-07:00

I was talking to my mom, and she mentioned something the Osmond dude on American Idol said - although it is certainly not original to him. I guess he said "I have MS, it doesn't have me." She wanted me to apply that to my diabetes.

My gut response was "That's simply not true." Of COURSE it has me. AND I have it. And we are battling it out in a neverending war. The outcome is unknown, but truthfully, the odds are heavily in favor of diabetes winning.

I understand the thinking. It's better, psychologically and physically, to believe that the disease is secondary to who I am. But telling myself "I have diabetes, it doesn't have me?" Is that truly helpful? Yes? No? Maybe so? I've obviously been mulling it over. It's all about that tricky illusion of control - how much control do I really have? Quite a bit, or none at all?

Then she tried to tell me how much worse things could be, I could be in constant pain, I could have no legs, I could live in Haiti. I've told myself that, too. And you know, it's funny, but telling myself that other people's lives suck worse than mine does never seems to make me happy.

I tell myself how lucky I am to live in a country with insulin available, hell, with FOOD available. And I really do feel grateful for that. I think about all that I have been blessed with. I have my good days and my bad days, and on the good days, well, things are GOOD, and the sugars are normal, and I think "I can live with this, we can coexist, it's fine" and when the sugars are flying around for no reason that I can possibly fathom, i.e., the bad days, I get bitter and angry. Thankfully I have more good days than bad.

And so: One day at a time. Serenity prayer. (God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.) You know, I've never even touched a beer, and yet I feel like a recovering alcoholic at times.

My phone alarm just went off. Time for a Lantus shot. My diabetes is calling.

Subtle Signals

2010-05-31T14:18:00.000-07:00

Dreamed about chocolate cake. Woke up briefly. Then started dreaming about stuffing 5 pieces of cinnamon toast into my face. Quickly and without insulin.

Think my body was trying to tell me something? Apparently dreaming about large amounts of carbohydrates is indicative of a low blood sugar.

FINALLY!

2010-05-14T11:20:00.000-07:00

Ok, so I finally got the results - C-peptide levels are right around 2.5. Lower than last time, dang it. (used to be 3.5). But still pretty good for a Type I diabetic 16 months after diagnosis. So...good news, I guess. The honeymoon is still going on - even if my body's not doing AS much of the work as it was before.

I'm not sure what my baseline C-peptide was, I do know it went up after the first infusion, my guess is I'm right around baseline. Evidence again that the first infusion did much more for me than the second one. I really think timing is critical on this drug. The sooner you get it, the better.

Also, A1c was 5.9. Awesomeness.

Waiting Now

2010-04-28T11:37:00.001-07:00

I just went up to Utah again for another mixed meal tolerance test. This test marks the one year anniversary of my first infusion. It measures C-peptide levels, and will tell me if I'm still making insulin.

So now we wait. Dun-dun- dun. It should only be a few days, and then I will have a new a1c to record, and some new valuable information.

Previously, after each one of these, my sugars have been completely normal after the test, which told me my pancreas handled the Boost drink pretty well. This time, 160's. So, not dangerously high, but not exactly normal either. It makes me think I'm still making some insulin, but not as much as I used to. We will see what we will see.

My fasting sugars haven't been fabulous lately, either. The doc told me to wait a few more days, and if they were still high, to up my Lantus back up to 10. (Sigh....) But I'm not complaining. 10 is still a very low dose, and the control is still very easy.

Upon coming in, the nurse said "Did you SEE Popular Science March 2010?" Um, no? I don't make it a habit to read Popular Science....she said there was an article written by one of the very first patients to ever get the drug - and after NINE YEARS, her body is still making insulin, although now it is starting to go down. NINE YEARS of honeymooning is pretty amazing. So -nine years from now (I guess 8, maybe, since I've had the first year) - they might have a really great artificial pancreas, or a stem cell based cure, or nothing, I don't know. Who can predict, really? But I choose to be hopeful.

Here is the article - really interesting stuff.

Cheating Nature

2010-04-05T14:09:00.001-07:00

It is a very strange feeling to know that if nature had its way, I would be gone - and it would be over a year now. My kids and my husband would visit my grave, and at this point, my husband could possibly be considering remarriage.

But no. I cheated nature. I continue to cheat it every time I inject myself. And so I am still here, thankfully. It's still a strange thought, though. No intervention - no me. I mean, that should mean something, right? Or, maybe not. Maybe it's just the way things are.

And yet, I don't live my life a whole lot differently than before. I mean, yes, the diet and activity level have changed dramatically, and I carry a purse filled with insulin and candy everywhere I go, but I'm not, like, skydiving or traveling to exotic places or anything like that. I don't take advantage of every moment I have left. I waste a lot of time on facebook, actually. Is that wrong?

Do other people feel like this? People who have beaten cancer, or survived a heart attack, or generally cheated nature in any way. Do they go through an existential crisis? And does it change anything for them?

It reminds me of when my SIL had a baby, and they were worried that it might be too big for her to deliver, since her husband is so much taller than she is. She was told "nature always fits the mother." Later, after her C-section, she asked "what happened to 'nature always fits the mother?'" "Well, nature doesn't care if it kills off 10-20%. The species survives." OK then.

I guess the species would survive without me. But I'm glad I'm still here for a while yet. Hopefully a LONG while. Take THAT, nature. I cheat, and I'm winning. (For now.)

Hot Times at the Pharmacy

2010-03-09T15:15:00.001-08:00

At the doc, I asked for some different needles, I really don't like the ones I've been using. And I've asked for different ones before, but the pharmacy never changed them. And I mean, they were FINE, so I just used them.

I got the new needles today. They show half units, and only go up to 30 instead of 50.

It's a little sad how happy this makes me. I was thrilled when I opened them and checked them out. Seriously, happy.

I guess I'm easily amused.

Nice

2010-02-24T14:57:00.000-08:00

Celiac came back negative. Phew.

Doctor's Visits

2010-02-18T17:16:00.000-08:00

Yesterday I saw my endo. He LOVES me. He raved about my sugar print out, congratulated me on my tight control and discipline. (Much of it IS me, I'm obsessive about control, but I am definitely still honeymooning after 13 months, so let's all give a nod to my pancreas and the test drug.)

And then he waxed philosophical about whether or not he would be able to do it, (be disciplined with diabetes) and then we talked endlessly about the test drug, and then he took some labs, so he could say he did something. He also told me to gain weight by eating more carbs. Huh, Thanks. SUPER good insight there. (But seriously, what did I expect, he'd have some magic weight gain wand that he could wave?) (That would be sooooo cool.)

He likes to talk about the trial. It makes him so happy that I'm doing it. He recommended it to a pediatric endo for one of her patients as well. I hope it works out.

As far as the labs went, he tested for Celiac (which I have no symptoms for, but hey, the risk is there), he did a metabolic panel, and checked my vitamin D levels.

He called me tonight around 6:00 - and I always get nervous when doctors call me - to talk about my labs. He hasn't got the celiac antibodies back yet, but my vitamin D levels were low - around 6, when 30 is about normal. So he told me to get some OTC vitamin D. (2000) I don't know how much a supplement is going to help, I thought the OTC levels weren't sufficient, but hey, I'll do it, see what happens. Also, the sun is coming out a lot more, and I couldn't be happier about the excuse to spend more time outside.

Today I went to the OB/GYN for the first time since we moved to AZ for a standard yearly. And if I don't blog about it, then it didn't happen. So I went. And it did. And that's all I have to say about that.

Oh yeah.

2010-01-28T15:36:00.001-08:00

OK, so I was in Utah for a blood draw on Monday, and they were going to run an a1c and call me with the results. Just got the phone call. Oh yeah, baby.

5.7!!!!!

She asked if I'd been having a lot of lows, or if I just had good control. There was one day of lows a couple of weeks ago mainly due to the fact that I thought I should up my Lantus dose. (I was bitter about upping it, too). The next day, it was very clear that upping it was not the way to go. Bitterness assauged. Other than that, though, it's just mainly good control.

Today, I am happy. (Last night, I was mad at my 182 before bed, but hey, they can't all be perfect days, right?)

I Feel Like I Should Post

2010-01-27T14:55:00.000-08:00

Today is the official one year anniversary. I feel like I went through the whole one year stuff a month ago, though, because around Christmas was when I was feeling crappy and couldn't see, and didn't know what was up. By the time I got into a doctor and got a diagnosis, I pretty much knew what it was. So this anniversary seems a little anticlimactic. Still, though, it's worth marking.

I was in the dentist's chair a few days ago, and he was all "why are you here" and I was all "because it's been six months" and he was all "are you having any problems" and I was all "no, but I'm diabetic, so I come regularly" and he was all "DIABETIC!! Is that in your chart? Do we know that?" and I was all " Yes, but I know nobody here ever checks the chart so I'm mentioning it now" and he was all "well, you don't have any cavities" and I was all "well, good, since I don't eat sugar anymore" and he laughed. "That's the first thing I've heard that suggested diabetes was good for the teeth."

And then he handed me over to the hygienest and her assistant who chatted outside the room for a minute and I swear I heard "She just got her teeth cleaned six months ago" about 4 times. It was like they were shocked. Last I checked, six months was recommended, but I guess nobody really does it. So I got the assistant doing the cleaning, since I "just there six months ago" (AGAIN!) and my teeth were still pretty clean, and the assistant kind of sucks. But hey, she's learning.

I want a new monitor. I appreciate all the advice I got, (both emailed and on the blog) but again today I went from 175 to 92 in the blink of a test strip. Whatever. I have an appointment in a couple of weeks, they will know what the insurance prefers (if any), and I am asking for a new one. Monitoring is, after all, the only way to really manage this disease.

In conclusion, canker sores hurt. I blame the dentist and their x-rays.

TIme for a New Monitor, Maybe?

2010-01-18T18:26:00.000-08:00

So, before dinner tonight, I checked my sugars as usual.

69. That's odd. I don't feel low. (cue panic about not recognizing low sugars...) I'll check again.

153. Huh. My BS jumped almost 100 POINTS in the time it takes me to insert a new test strip? I don't think so. I'll check again. 180. Crap.

Hubby suggests I go grab my "back-up" monitor I keep in case I lose my regular one and check with that. Good idea.

122. OK, then. I'll go with that. That fits in with how I'm feeling (as in, I feel fine.)

(And let me tell you how much I LOVE using 4 test strips to check my sugar for one meal. Especially before my deductible is met.)

But, seriously, if I can't trust my monitor, I'm kind of screwed, right? Because if I'm at 180, I need extra insulin, but if I'm at 69, I need extra sugar. Kind of an important distinction. You know, as in vital.

It's a Freestyle Lite. It's what they gave me in the hospital at diagnosis because it's what Aetna preferred. I'm now with UHC (United HealthCare) and I don't know if they prefer one monitor over another, but, I'm going to ask -

Which monitor is the best? Most accurate? The easiest to use? Has anybody tried different ones and formed an opinion? I'd LURVE to know.

I Need....Something. Not Sure What, Though.

2010-01-05T12:29:00.001-08:00

I desperately need to gain weight. It's not healthy, my body-type. While I have always been an the scrawny side, this is not good. I can't understand it, really. My sugars have been fairly stable, I eat plenty, why am I getting so skinny? Is it because I've had a cold? I go into the endo next month, I can't wait. I have questions. Like mainly, how do I get fatter without screwing up my sugars royally? If he says "eat more" I will lose it. That's what everyone says, and IT'S NOT WORKING!

Today I went to the gym, in an effort to up my exercise for this year, and also to hopefully put on more muscle. I also upped my carb count (and dosage) at breakfast, since it's possible that my carb restrictions are contributing to my weight loss. Oh yeah, Curves was CLOSED at 11:45 on a Tuesday, and I checked my sugars before I went in (as I do before exercise) and I was at 200!!! (90 minutes post meal, so some insulin was still working I guess, but ugh.) Um, what was that about "my sugars have been stable?"

I lost it. I mean, really, truly, lost it. I will probably drop the Curves membership, because seriously, the hours are crazy enough (they've always been closed from 1-3, which I have never understood), and if they are shortening their hours even more, I simply can't do it. It's not like they have child care. If they're not open during afternoon kindergarten, forget it.

So I came home, checked my sugars again (172) and turned on my Wii fit to get my workout. I dropped the sugars to 103, and got my 30 minutes in, all the while boxing my arms off. I was mad, and the boxing felt good. I'm ALWAYS mad at a high sugar reading. I mean, if I'm counting my carbs and not eating doughnuts, and my sugars are still crappy, then what the hell is the POINT???

And HOW the hell am I supposed to gain weight? Upping the carbs just screws up my sugars, eating more calories isn't doing it, exercise isn't doing it, I need....something. Help. I need help.

Give Me a New Year, Please

2009-12-31T19:48:00.000-08:00

2009. It has been a year. This was the year that, in January, I landed in the hospital with a Type I diabetes diagnosis. The next day I stared up at the TV in my room, and saw a commercial for mint M&M’s, and cried as I wondered if I would ever, ever eat one.

Apart from 1996, when I got married, and 1999, when I had my first child, I would have to say nothing has quite changed my life like 2009. And, similar to those changes, this one is permanent. Unlike those earlier years, however, it’s not a change I wanted, or actively prayed for, chose, or even remotely ever thought would happen to me. The other difference is that the “permanance” is only for this life, not the eternities. However, there are days when “just this life” seems long enough, thank you very much.

“Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it’ll pounce on you and rip you to shreds.”By Wil “Printcrafter

I do what I can. I read everything I can get my hands on, including the large amount of quackery out there. (take this supplement, and you’ll be fine!) I watch my eating carefully, (I have basically cut out refined sugar altogether), I dose my insulin, I test my blood sugar, I go to my doctors and follow advice, I took experimental drugs as part of a study, both to help my health and increase the knowledge base. I even {shudder} exercise. While much of the time it’s just what I do, there are times when I want to throw my insulin across the room, eat a dozen doughnuts, and just say “screw it.” But I don’t. Because I’m not 18 and immortal. I have 3 children, and a disease that is ALWAYS vying for control. Just when I think I’m doing fabulous, a weird reading will show up, just to remind me that the tiger is still in the room. And then I get mad.

When I take the long view, it depresses me. When I think about the fact that essentially, the treatment for Type I hasn’t changed since insulin was discovered, it depresses me. The methods of delivery may have improved, but still, it’s basically “have some insulin, and good luck figuring out how much you need, because as much as we like to think it’s an exact science, it’s really not, but hopefully we can all figure it out together while we monitor you for complications.” When I think about my kids, well, I can’t really go there.

I read books, watch movies, and get sad that if I somehow fell into fictional Georgian England and met Mr. Darcy, I couldn’t marry him because I’d have to go back to my current time for insulin. It bothers me that people can fight bad guys without worrying about what the adrenalin rush will do to their blood sugar levels. And then I laugh at myself, because really, at that point, I have descended into the ridiculous. So I can’t eat yummy pie with yummy Agent Booth. Yeah, it was diabetes that stopped THAT from happening, because it was such a possibility before.

So I take it one day at a time. Sometimes one meal at a time. I may not be able to handle doing this forever, but I can do it today. The fact that this makes me sound like an alcoholic is not lost on me. And I HAVE survived this year.

I have even been taught several things. I know that angels have surrounded me at times, protecting me from myself when I knew not what has happening to my body. I know that taking care of myself is critical, and really, I eat better and move more than I ever have in my life. I know that Diet Dr. Pepper tastes like ice icream. I know that Mormons like sugar. I know that insulin is expensive. I know that my family loves me, and that my husband is willing to fight tigers for me. I have hope that one day, the constant needles and the constant pricking will be a thing of my past, although I have no idea when or if that will ever happen. I can still hope, though. I have to.

I also REALLY want to say (and ok, yeah, HAVE in fact said) ”Ok, Lord, lessons learned, could you please take away the disease now?” I really, really, wish that was how it worked, and yet my faith in miracles has not waned.

I saw a sign today that said “peaceful 2010.” And that is what I want. It’s what I want for me. It’s what I want for you. Peace. And the fact that we happen to worship the prince of peace, and that He has promised us His peace, and not as the world giveth, well, that is not lost on me either.

Peaceful 2010.

(2009 can jump out the window for all I care.)

Just for the record.

2009-11-26T15:25:00.000-08:00

That anxiety I mentioned? (I did mention it briefly, it's OK, you don't have to look through old boring posts.) Turns out, it's a possible side effect of the study drug (teplizumab). Who knew?

It's gotten much, much, better. So that's good.

Oh, and the burning feet? Also a possible side effect. Fabulous. And that hasn't gone away. It's hard to know, though, because nerve damage is also a side effect of diabetes.

(I just had Thanksgiving dinner. It was yummy. I hope I managed to dose accurately.)

I am so putting up Christmas tomorrow.

Thanksgiving and Diabetes

2009-11-26T12:19:00.000-08:00

I am currently about an hour away from eating my first Thanksgiving meal as a diabetic. I have no idea what the carb count will be. Heaven help me. I am not kidding - divine intervention would be very welcome.

Let's face it. You can talk all you want about gratefulness, family time, etc., and that's all there. It IS. But when push comes to shove, Thanksgiving is about the food. And anything that's about food means it's about diabetes as well. It's always there, nudging you when you look at the stuffing and mashed potatoes, chastising you for even THINKING about that pie. Is it worth another shot hours later for it? Yes? No?

Frankly, diabetes is always an unwelcome visitor, and I'm tired of it. And oh yeah, I have decades of this ahead of me, if I'm lucky. So I guess I better get used to it. Gah, that's a depressing thought.

Ok, breathe. One day at a time. I can do this.

I may just have to resign myself to having a weird blood sugar day. But frankly, I can't stand weird blood sugar days, not only do they make me feel awful, but I know they are damaging to just about everything in my system.

I am snapping out of my self indulgent whining now (but...but...this disease sucks, and I want everyone to know it, all of the time....whine, whine,SMACK) and focusing on the fact that we've had fabulous friends here this week, and it really has been fun. I am thankful for that. Also, cheese has no carbs. Awesome.

Sigh.

2009-11-10T09:15:00.000-08:00

Last time, 3 days after I got home from the infusions, the lows began. This time, not so much. I'm trying really, really, hard not to be disappointed about this. After all, this drug is new, there are no hard and fast answers. Still. Sigh.

Heading Home

2009-11-08T12:53:00.000-08:00

I am sitting at the airport waiting to go home. I can't wait. I am so homesick, but all will be remedied soon.

The infusions went well, the rash did appear, but wasn't nearly as bad as it was last time, and I passed all my labs and got the full dosage of the drug. I kept worrying that I would get an infection right before, or the swine flu while I was there, just that something would happen to interfere with me getting the drug. Nope. Got it all. Whew.

I have more anxiety than I ever used to. More fear, too. I don't really know what to do about that.

My sugars were a little wonky up there. Nothing huge, but it did spike here and there, and my pre meals weren't quite where I liked them. One day I woke up at 148. You see, not horrendous, but not good, either. This added to my fear that I was getting sick, and would fail the CBC they ran (almost) daily. I did pass all my labs, but let's just say I don't want to run an a1c right now. Give me a few weeks at home, in my regular routine, with no restaurant meals and homesickness added to the mix.

This disease, though, it likes to rear its ugly head and remind you its still around and vying for control. I hate it when that happens. It's very discouraging. So now every time I work out I visualize myself beating up diabetes. It makes the workout a little more fun.

I got to the airport today really early (I'm a little anxious to get out of here) and stopped to get lunch. Pulled out my Novolog and bam! Dropped on the tile floor, and thus I have another bottle completely broken. I had just opened it, too. I always travel with extra now, (thanks to 3 month supplies coming mail order - I just make sure I'm home when it's delivered so it doesn't sit in the heat), so I reached in my purse to get my other bottle only to realize that I had put it in the checked luggage. I NEVER do that. I ALWAYS have extra with me. Today, though, have now rendered that "never" and "always" complete lies.

My hands smell like insulin now. It's not a pleasant smell.

So I sat and stared at my lunch wondering what to do now. I had one of those damn spikes post breakfast (191 1.5 hours after - I felt weird, so I checked) and my pre lunch was around 135, so it had come down, but see, not exactly where a pre meal should be. Seriously, what would you have done? With airport waiting time, flying time, etc., it would have been about 4 hours before I had access to my Novolog. I couldn't decide if I should eat, and just issue a correction dose later, go back to ticketing and ask if I could get to my insulin, or what. In the end, I ate a little of the broccoli, tossed the rest of my lunch ( bye bye $10!) and bought a bag of almonds to eat. I figured that was better than not eating at all, but low carb enough that it wouldn't spike me too badly. Right decision? I have no idea. I have candy with me just in case.

Then I stared at all the people who were eating ice cream cones and scones, and I felt a huge surge of envy. Normally, I'm OK with the fact that other people can eat whatever and whenever they want, and I can't, but today it got to me. I blame the homesickness. Or the weather. I always like to blame Utah weather for all my problems.

Anyway, HI EMILY, it was fun to meet you, and I am happy to be going home. Hopefully this newest dose will do its thing. I'll be watching, and beating up diabetes on a regular basis.

It Begins

2009-10-21T21:24:00.000-07:00

Tomorrow I leave again for the next set of infusions.

I'll let you in on a secret. I don't want to go.

I don't want to be cold for 2 weeks plus. I don't want the nasty rash. I don't want to feel like crap for the first week. And mostly, MOSTLY, I don't want to leave my family. I miss them already. And frankly, it's a little dull up there.

Morning - labs, infusion, while I read or whatever. Afternoons and evenings, seeing people, shopping, hanging out. It sounds fun. And it is. For the first week.

See, last time, I thought 2 weeks would be doable. And now I know. A weekend away from your family - good. 2 weeks - too long.

My husband says it'll be better - it'll seem shorter since I've done it before. He says it'll go by quickly, and the family and friends I'll catch up with will help me deal. He's nice. A bit delusional, but nice.

Of course, I have a choice, and I'm choosing to go. Because nothing would make me happier than saying "Remeber 2009? That was the year I was diabetic."

In conclusion, obviously I like to start sentences with the word 'and.'

Another Low Day - Which is Good, Actually

2009-10-10T10:16:00.000-07:00

Yesterday I woke up at 67. It stayed there most of the day. Each pre-meal was in the 70's (I hate how below 80 feels, don't you?) and I had 2 lows in the middle of the night. This morning - 72.

So today, I am taking my Lantus dose down to 8 units, see how that treats me for the next couple of days - to see if yesterday was an anomaly, or if it means my pancreas likes to work better.

Seriously, though, if the dose stays lower - and I don't see why it wouldn't - every other time I've reduced my insulin, it's stayed there, and done good things for me - this means I am close to HALF the insulin usage I was before. (That's both with the Novolog and the Lantus). With the next infusion scheduled to begin in 2 weeks, I am optimistic about my future.

I mean, low days don't feel so good, but I'm OK with it if they help my a1c and indicate possible cell regeneration. Of course, I never purposely go low. No way, man.

Also, I have split my Lantus does - one in the morning and one at night, (9 a.m. and 9 p.m.) and even though it means more shots, I like it better, so if I mess them up again and replace one with the other, I'm not taking too much Novolog. (I mean, yeah, it'll be more than I should, but it would be easier to fix). Of course, I am determined not to mix them up again. Too scary.

Does anyone else have to change their insulin ratios for different meals? It seems like at dinner, I have to use a tad more insulin per carbs than I do at breakfast/lunch. I wonder if the Lantus dose has worn off by then, but splitting it should have helped, and I've been split for a few months now. Of course, it could be completely due to the fact that after breakfast/lunch, I do stuff (exercise, clean the house, run errands, etc.) and once dinner is over, I'm all about curling up with a book or in front of the TV. Heaven forbid I be productive after 7 or 8 p.m.

Ouch.

2009-09-29T19:52:00.001-07:00

My feet are burning. Crap.

Still honeymooning - I have proof!

2009-09-24T19:16:00.000-07:00

So, last week I went up for my second "mixed meal tolerance" test, which is a lovely procedure in which they pull blood, and then give me a Boost drink (vanilla! I asked why they couldn't do chocolate, and they stared at me blankly and could give no real reason. I like to think the next study patient might get chocolate thanks to my efforts).

After my lovely "meal", which I have to drink in 5 minutes (not hard) they pull blood every half hour for the next four hours.

Oh, did I mention I go in fasting, having taken no insulin the night before? It's such a party.

Based on these results, they decide whether or not I am eligible for infusion. They are mainly checking C-Peptide levels, because if there is no C-peptide activity, then there is no insulin production to preserve, thus making their efforts in vain. (Although I do wonder if someone who's been diabetic for years could have some positive reaction to the drug. Maybe that'll be their next study.)

I am happy to report that not only do I still have C-peptide activity, my levels are higher than they were before! 3.5, in fact, which is fairly high, even for non diabetics. That is excellent news.

So my next infusions start towards the end of October. If this dose helps as much as the last one did, well....fingers crossed.....

They ran another a1c, too. 6.4. Not as good as the last one, but I think my last one (5.3!)was so low due to multiple lows as I kept having to figure out my insulin:carb ratio that was constantly changing. Still, 6.4 ain't bad. I'll take it.

I Am Hungry.

2009-09-09T08:23:00.001-07:00

For the past few days, I have been STARVING. Like, all the time. the diet hasn't changed, and the sugars have been stable.

What gives? I haven't felt this way since I was pregnant or nursing, and well, that's definitely not the case now.

Anyone else starving? Is it the amylin thing? Do I mention it to anybody? Will it go away?

More Numbers

2009-08-28T14:56:00.000-07:00

Man, this is boring, boring stuff. You know, if you're not me.

VAP test results came back today. Apparently, the fat is pretty fluffy. Good.

Also, when they ran my lipid profile in July, my LDL was 162(considered high), HDL 47 (good) total 221.

NOW the LDL is 146 (moderately high), HDL 52 (very good) total 215.

Of course, the total number doesn't mean much, it's all about what kind of cholesterol you have.

These tests were run almost exactly a month apart. So things are headed in the right direction - although the triglycerides went from 61 to 73, but both of those are still quite low.

As far as the extended results from the VAP, the Lp(a) cholesterol (a very dangerous inherited LDL cholesterol that does not respond to statins), very good. 6. (Under 10 is what you want.) All LDL is pattern "A" the large, buoyant kind. Whew. Pattern B is dense, and often associated with diabetes. I have none of that, not even any A/B pattern. It's the Lp(a) and the pattern that you really want to look at, and the main reason for the VAP.

CRP = 1.1. Under 1 is low cardiac risk , but 1.0 - 3.0 is average cardiac risk, so I'm on the low end of average.

So there you go. No statin for me. The numbers do kind of fascinate me, but then, they're my numbers.

Statin update

2009-08-18T09:27:00.001-07:00

Well, I called the study and they got back to me and said I could go on Zocor, but I had to go off during the infusion time. (October) Going off and on seemed a little strange, so I decided to wait until after my infusions to take it.

I wanted to talk to my endo about it. I had my appointment yesterday, and talked to him about waiting until after the infusion to start the statin. He thought that was a good idea, although he wasn't sure he wanted me to treat the cholesterol at all.

I have a family history of high cholesterol, but no history of heart disease. Have I mentioned how much I love my endo? He knows the ADA guidelines, and the reasons behind them, but he firmly believes in treating the individual. He was saying all the stuff that I was reading, that treating high cholesterol doesn't necessarily prevent heart disease, and that some high numbers don't necessarily a sick person make.

HOWEVER, seeing as you do need to be a tad more aggressive when dealing with diabetics and cholesterol, he ordered a VAP test and a CRP test, and he was trying to describe what it was for, and I said "to see if my fat is fluffy?" He laughed, and said "how do you know that term? That's exactly it." I said, "they told me in class."

So there you go. Let's all hope for fluffy fat.

I Did It AGAIN!!

2009-08-16T20:35:00.000-07:00

I switched up my insulins again, and once more, overdosed. This time, it was on Friday. Woke up, thought "time for my Lantus", and boom. All 10 units were of Novolog. Fabulous. I didn't even think about it (or notice! How scary is that??) until about 10 minutes later when I went to take my Novolog to dose for breakfast. That's when I realized...I've seen this bottle today...and it wasn't good. (I keep them in separate places.)

I was on vacation, and was packing up to leave. I completely blame that. But still. NOT GOOD, people! I ate my breakfast, doubled it, in fact, which can account for maybe a third of the dose that I took, and then told my husband and went and sat in the car eating Starburst while he packed up everything.

It actually wasn't too bad. I would check my sugars every 15 minutes, eat a candy, and wait. Timing wise, it worked out pretty well, so I didn't go too low or too high. LAST time, (and I can't believe I have a frame of reference for this, gah!) I freaked out and drank a can and a half of Dr. Pepper and munched candy one after another. I got fairly high (mid 200's) and then waited for the insulin to do its thing. This time, I just kept it slow and steady, but this time, it was more insulin. There will NOT be a next time.

Still, though, lots of candy on hand is a good thing. I think I need to be cured now. Obviously I can't be trusted with these meds.

Six Months

2009-07-27T09:07:00.000-07:00

Today is officially the six month anniversary of diagnosis.

It really has just become a part of my life, something I just deal with, and for the most part, I'm OK, since the control is still pretty easy.

But today, the permanence of this disease is sinking in. I've been doing this for six months, and will be doing it for many, many more. All the months, actually. There's no "six months down, six to go!" rallying cry or such. It's a little depressing.

But there's nothing to be done about it, and wallowing is not pretty or healthy. So I just carry on, buying insulin, counting carbs, and hoping that medical breakthroughs continue to happen.

Statin, statin, who wants a statin? Do I?

2009-07-24T10:49:00.000-07:00

So, I switched PCP's recently. The new dude ran a lipid profile, since the one I had done at diagnosis was hideously bad, but nobody takes that as accurate, since high sugars also bring up your cholesterol. (Seriously, is there anything high sugars do not screw up?)

Anyway, the LDL was high, and he sent me a card with the results along with a prescription for simvastatin, the generic for Zocor. The rest of the numbers were good, btw. Triglycerides, HDL, all that. And it is light years better than what it was in January at diagnosis.

I'm a little torn about this. On the one hand, I know high cholesterol is bad, especially for diabetics. Bad, bad, bad. On the other hand, I've been reading about statins, and they seem to be pretty well tolerated in for short-term use, but long term, the side effects and risks really start to outweigh the benefits.

The thing that really concerns me, however, is that they have recently learned that they seem to lower your blood pressure as well, which has a lot of people saying "Great! 2 risk factors lowered in one drug!" For me, though, it is not uncommon for nurses to take my blood pressure multiple times, saying "hmmm....that's a little low...let me recheck." And I am constantly hearing "Is your blood pressure usually this low? Is this normal for you?" My last BP 2 days ago was 80/50. So yeah, I run low.

Plus, I'm not sure if I can take a statin while on this study, and there's no way I'm jeopardizing my status in the study for this pill. I asked the study nurse, she should be calling me on Monday to tell me whether or not it's OK.

So that leaves me staring at this prescription, wondering whether or not to fill it. What do you think?

Bright Light! Bright Light!

2009-07-23T12:19:00.000-07:00

My eyes are dilated. The sun and I should be friends again in oh, 4-6 hours.

I am happy to report no diabetic retinopathy. I didn't think there would be, but if there's one thing I've learned about this disease, it's that YOU NEVER KNOW.

The end.

Ahem

2009-07-22T14:48:00.000-07:00

I went up to Utah for another blood draw (I swear, so ridiculous that I have to go up there) and they ran another a1c. The result was.......(may I have a drum roll, please)?......................................

............................5.3!!!!!

Yeah, I'm pretty excited about that. Woot!Woot!

My Insurance is Changing

2009-07-15T10:54:00.000-07:00

Just when I had this whole HMO thing figured out.....

I swear this is the fourth insurance plan we've had, and we've only lived here 2 years. Switching everything out every 6 months is getting a little tiring.

Everything will be more expensive (surprised?) but at least I won't need referrals anymore. Somehow, though, I'd rather get a referral than drop $50 every time I go to the endo when I used to have a $25 copay at specialists. Not to mention the increased cost at the pharmacy....

If only insulin didn't expire after a month. I feel guilty every time I throw out that bottle that's still 3/4 full. How ineffective is it after 30 days, anyway?

My Wrist Feels Naked

2009-07-13T16:42:00.000-07:00

My bracelet just broke. The one that says "Diabetes" on it. The one I wear 24 hours a day, 7 days a week. It was cute, too. This is what it looked like. (Except my plaque was the long, horizontal one). Now I guess I should get a different one. Maybe I should get a stronger one? Or possibly take it off when I shower?

Unless it's some sort of cosmic sign.....

Holy Crap on a Stick

2009-07-10T14:56:00.000-07:00

Today I was writing down my Lantus dose as I was bolusing my breakfast. Guess what? Thinking about 10 units of Lantus (yay for lower!) while dosing 2 units of Novolog is not a good idea. Mixed them up in my head, drew out 10 units, and began dosing. I figured it out and stopped at about 8 units. Crappity crappity crap crap crap. 8 units of Novolog when I need 2 is not a good idea.

I F-aaah-REAKED out. I had visions of my kids finding a dead mother in the house and not knowing what to do. I grabbed the Dr. Pepper and the Starburst and I forced my husband to come home so he could force sugar into me and call 911 if necessary. I called the Dr., who told me I would be fine, just eat a lot of carbs. Of course I knew that, but...isn't there something else? Turns out, nope.

I mean, I have to be 90 points high before I issue a correction dose. So in my head, 6 extra units could really take me out.

Obviously I am still alive and OK. I did not go to the hospital. But I haven't been this scared in a while. I didn't know how to tell my kids - "Watch Mommy in case she passes out and then call 911, but everything should be fine, but just in case, you know....."

I remember in the hospital them telling me to NOT MIX THESE UP. And now I have. I survived, but hopefully, never again. I can only imagine if my Lantus was 25 or something.{shudder}

A Test

2009-07-09T13:30:00.001-07:00

Yesterday I ate approximately 33 grams of carbohydrate at lunch time. I did not take a bolus, mostly because I forgot my needle. (!!) But I figured, hey, now's as good a time as any to see how my pancreas will deal with this.

Blood sugar at dinner: 88. My pancreas (and the Lantus) totally kicked butt.

I am pleased.

I am scared to try it again, though. I don't want to work my pancreas too hard, in case it fails faster and ends the honeymoon. I don't even know if that makes sense, really.

I mean, HOW do you decide to go off insulin? It seems inordinately risky, really. But I will ask the study doc when I'm up there.

Still, for now, I am pleased.

Where is the Time?

2009-07-06T10:12:00.001-07:00

Between seeing the endo every 3 months, the dentist every 6 months, my ob and pcp and eye doctor once a year, not to mention the extra study visits, plus diabetes education, it seems like there is no time to do anything else but see medical professionals!

That doesn't even take into account the frequent pharmacy trips. (I don't do mail order. Not with this heat. If I'm not home, the insulin sitting on my porch worries me.)

Not that I'm complaining. Each one of these people has helped me tremendously. I just wish I could see them less frequently.

People, I need a hair cut. I don't seem to have time to get one. I blame summer vacation. And diabetes.

Lows, Lows, and More Lows

2009-07-05T11:44:00.000-07:00

In case you couldn't tell by the title, I have been bombarded with blood sugar lows for the past few days. I mean, crazy stuff. Last night I had dinner, (120 pre-meal, which is higher than I've seen in a while, but I blame the tasting of the food beforehand) and did the dishes afterward, and BAM! One hour later, I'm at 49. Ouch. I didn't issue a correction dose or anything.

You know, it's not like the dishes are strenuous exercise or an unusual occurrence.

The day before that, it was like I could not get out of the 60's, and so I lowered my Lantus dose a couple of units. Still, yesterday was bad.

Today I am continuing the lower Lantus and also adjusting the Novolog carb ratio, so I take less.

All of this, while annoying, is actually very encouraging, because it might just mean the study drug is helping.....the administrator did say some people lowered their doses a couple of months post infusion, which would be....now. (Some people lowered or went off right after infusion too.)

Here's to a healthy pancreas! (Or at least a healthier one...)

In other news, really like my new PCP. Bonus.

My husband has this theory...

2009-06-30T11:30:00.000-07:00

He thinks I have an overabundance of Human Growth Hormone.

This is based on the fact that....I look young and have trouble putting on weight. i believe him on the weight thing. The young thing....well....not so much, but it's sweet of him to say.

It's also based on the fact that I make a lot of prolactin. This is released by the pituitary, and he believes (could be wrong) that HGH is released by the pituary as well. He thinks my pituitary is a little overactive.

So I was reading, that an increase in HGH puts you at risk for diabetes. It is used (and there's some controversy about this) for weight loss in obese patients.

Even if his theory does prove to be correct, and I have a lot of HGH, I don't know what that would mean for me. I don't think decreasing my levels of HGH would get rid of my diabetes or anything. (If it did, people would know. I mean, hello.)

The question is, do I mention this theory to my doctor? Would it matter?

I have an appointment this week with a new Primary Care (mine retired).

Ah....

2009-06-25T13:59:00.000-07:00

Remember when my pancreas worked? Those were some goooood times.......

Do you know what I hate?

2009-05-23T13:22:00.001-07:00

Well, to be honest, I hate a lot of things about this disease, but something in particular - when you look at what you're going to be eating, count the carbs, and dose accordingly. Then, halfway through the meal, you get full, and don't want to eat any more, but know that if you don't ingest the carbs you planned for, you're going to crash later. So you keep eating, and wonder, how is this healthy again?

Also, eating out is a pain in the tuckus. You can get some nutritional info on-line for chains, or ask them for it, but it is also very clear that nutritional info varies from restaurant to restaurant, depending on the chef, and these meals that have carb counts in the 100 grams or more? HO-LEE COW. Do any of you really eat those, and just take a lot of insulin? I mean, I've heard that's OK to do, but really?

We don't eat out a ton, anyway, so it's not really a big deal, but being out of town for 2 weeks for a study tends to increase your restaurant attendance (especially when you're being reimbursed for the meal).

Also, I hate scorpions. Not diabetes related, I know, but I still hate them.

Boring Numbers, But Good News Nevertheless (I think)

2009-05-17T19:40:00.000-07:00

Well, I don't think there's any question about whether or not I got the drug, although hey, the placebo effect is pretty strong, so what do I know?

Anyway, the Monday and Tuesday after I got home, I had a few nighttime lows, (60s) having to munch the Starbursts multiple times a night. While tasty, it's not really the best idea in the world.

My endo, who has become very parental towards me (I'm so PROUD of you for doing this!) took me down to 12 units of Lantus and switched me back to a morning dose. The endo in UT put me on a night time dose of 13 (I was originally on a morning dose of 14. Boring numbers much?).
This means I had two days (a couple of weeks apart) without Lantus at all, (and not adjusting my Novolog dose) while I made the change, and both of those days my sugars were completely fine. So I think my pancreas is still functioning a tad.

My endo is super paranoid about night time lows and likes his patients to have a morning dose of Lantus, so if you go low, you're awake for it. The other guy (who was a TALKER, holy cow) likes night time doses so when it wears off, it's not shortly after a meal or a snack and your sugars won't spike. Both valid arguments, I suppose.

So, while I'm certainly not off the insulin, the dosage is lower, and I'm starting to have a lot of pre-meals in the 70s, which I NEVER had before. My pre-meals were good before, though, usually in the 90s.

I have another blood draw this week, which I have to go up to UT for, which I think is kind of silly, since they just draw blood and then send it off to Macrogenics. Um, hi? We have needles and post offices in AZ. But hey, you want to keep paying for plane tickets, I'm OK with it....

I Don't Want to be too Optimistic Here, but...

2009-05-11T10:30:00.000-07:00

Blood sugar before bed:106. I took 13 units of Lantus. (I used to be on 14, the endo in UT switched me to 13 and changed me to a nighttime dose, to alleviate the post breakfast highs I was having.)

Woke up at 2 a.m. disoriented and shaky, checked my sugars. 77. I know, not super low, but I seem to react to anything below 80. I think it was on its way down, too. So I ate a Starburst and went back to sleep. Morning blood sugar: 77 again. I usually wake up in the 90s or 100s.

I know this is not conclusive evidence yet by any means, but I am cautiously optimistic that this means the drug is working. If it was working, I would be seeing lows right around now (3-4 days after infusion stopped) they said, so I am watching everything carefully to see if I have to back off the insulin dosage, or possibly (dare I say it?) go off it altogether. I see my own endo tomorrow a.m., so I will be chatting with him about how exactly to back off the insulin (the Lantus? the Novolog? Both? Slowly or cold turkey?). In the meantime, I am carrying lots of candy.

Keep your fingers crossed....

One Week Down, One to Go

2009-05-02T12:32:00.000-07:00

I'm tired. I want to go home. I miss my children. I can't believe how long two weeks is! I thought it would fly by, but instead, plod...plod....plod...

Anyhooo--boring side effects noticed - severe fatigue the first couple of days, rash on arm, possibly due to the picc line and not the drug, and general malaise if they don't give me ibuprofen and benadryl beforehand (which they typically d0.) In general, not too bad.

Carry on.

Getting Drugged - Protege Study

2009-04-28T11:53:00.000-07:00

I have sporadic internet access, as I sit here and get blood pulled, and drugs put in, and vital signs taken. I mean, they let me use their internet, but it’s a “pseudo-internet” that blocks all streaming video, which includes Hulu and thus makes it impossible for me to watch continuous Buffy episodes while I wait. Season 3 waits for me at home, and I believe the DVD’s are mocking me from afar.

(They don’t want their employees “wasting time” on Hulu and such. I say it’s a blatant blockage of agency. Empoyees should be allowed to waste time! They should be allowed to get fired! Choice and consequences, baby.)

So, anyway, my morning are spent in the hospital, with my afternoons and evenings free for me to whine at various friends (but I’m TIIRRED) and play “speed Sorry.” (rules invented by moi. It basically includes me moving all the kids pieces super fast so the game goes faster.)
Oh, and a few people have asked, so for the sake of clarification - the placebo in this study is just saline. Since the standard of care for diabetics is self management (in my case, shots), there wouldn’t really be anything else to give me - so it’s either the drug or saline solution. I like to think it’s the drug.

On the plus side, I am now considered “immuno-suppressed”, and with my wacky immune system anyway, I’m sure the swine flu will pass me right on by.

It’s cold here. It’s almost May. Boo.

Thanks for the prayers.

The end.

Diabetic Flair

2009-04-20T11:50:00.000-07:00

What can I say? I just thought those 2 went together.

I have considered stealing Splenda packets from restaurants and adding them to my stash at home. I have justified it in my brain by saying they're there for my use, and just because I'm not using them at the restaurant, per se....Costco coupons cured me of this, for now.

Reminding me of the time the Mcdonald's guy gave me the dirtiest look as I shot up in the drive-thru with my 5 year old in the back seat. I don't think "diabetes" was his first thought when he saw that needle. He's probably telling everyone about the heroine addict he served and her doomed son.

I Am Officially IN!

2009-04-16T10:02:00.000-07:00

I am in the study. I am getting experimental drugs that nobody knows what will do to me long term. I will be away from my family for a full 2 weeks, including a weekend that my parents will be HERE, at my house, without me. I will miss some big events at the school. It will be cold in Utah.

I couldn't be happier about it.

For one thing, all the labs they took and what-not, told me that I am, indeed, still making some insulin. This is good news. Because this is a drug that stops the T cells from attacking my pancreas, thereby preserving the insulin I am making, prolonging the honeymoon period, and basically improving blood sugar control, since my body will be doing some of it naturally. That's the goal, anyway.

They also took an A1c. My A1c at the end of January was 12.2.

ALMOST 3 months later, but not quite..may I have a drumroll, please? The result is......6.8!!! I must be doing something right.