Monday, January 31, 2011

Making the "D" List

444 mg/dl.

I know it to be true,long before the blood & the test strip met(in not-so-perfect harmony). My mouth is dry,my eyes heavy,& I'm ready to snap at the slightest provocation. But one task remains,at the end of another school day...a task that is as foreign to me as anything I have ever done.

I must register my diabetes as a disability. Nursing school demands it,there is no way that I cannot.The instant anything on my person vibrates,shrieks,or goes off (or the day I have a massive low & have to eat) is the instant that I am summarily dismissed,penalized,rejected,expelled,etc. I've never had anything of this nature,for I've never had any need for it.But now,there are 4-5 instructors who don't know me from anyone else & don't care & I've got to cover my bases.(against the bad diabetes day...for they happen) Even D won't get me a "go home" card but if it gets me a predictable lunch break,darn right I'm going to take it.

So I pick up the form,(to bring to my Endo)chug a bottle of water,bolus,& track back to my car...the ending of another unpredictable day-in-the-life with the big D. No idea how I got that high,just yesterday it was perfect bgs all day. I really think people with insulin dependent D deserve some sort of break,like exclusive access to the soda machine(diet,of course) to quench that unquenchable thirst.People without D(or a family member with it) have little clue just how lucky they really have it.

Thursday, January 27, 2011

Then and Now

Discovered this meme over at Canadian D-Gal, and it looked fun, so I thought I'd try it.

10 years ago I was:

-in my 2nd semester of community college,and preparing to beginning pumping on Ye Ole Minimed 508.But because my insurance company took 3 months to approve the pump,and it took another 2 months to get a training date I would not actually begin pumping until April.

-working a retail job, and ok with it.

-living at home.

- wishing I could win the lottery.

Five Years ago I was:

-still working that (same) retail job, and hating it.

-finally moving out of home, to my very own place.(small, rented house)

-now pumping with a Deltec Cozmo

-dating a wonderful guy who would later become my husband

- still in community college

-doing my best NOT to go bankrupt

1 Year ago I was:

-finishing the very last nursing school prerequisite! (it only took me 9.5 years, how about that...)

- Enjoying (or not) my first trip to NYC

-working hard to lower my a1c

Yesterday I:

-had a doctor's appointment

-barely ate anything at all until 4 pm because I was busy rushing from one end of the county to the other end so I could get to my class lab on time.

-had a nightmare involving my endo screaming at me for no good reason.

- sacked completely out (post-supper) and did not look at the books at all.(wise, no, since I have mandatory homework but I'd ceased to care)

Today, I:

-woke up to a 125, went back asleep and skyrocketed 120 additional points in two hours(doing nothing).

-ordered cupcakes for a party on Saturday.

-checked the school closings & was elated to find that 5 measly inches DOES cancel school for the day. (although, I have to make it up tomorrow)

-made lists of all the things that I really should be doing.(and haven't done yet)

5 things I'd do with 1 million (or rather, billion) dollars

- buy my parents a house
- set up a foundation for uninsured folks to get the medications (in particular,
diabetes meds) that they need
- go on a year long "tour the globe" trip
- give to charities
- buy my own personal CVS scanner machine

5 favorite TV shows:

- Grey's Anatomy
- Private Practice
- Royal Pains
- House
- The Middle

5 biggest joys

- being alive (and in relatively good health)
- being married
- being in nursing school!
- having health insurance,which gives me the means to do all of above
- a cold diet coke

Monday, January 24, 2011

Low to Go

Lately, I've been having two of my most unfavorite types of lows.( yes,there are types) The worst kind (of course) is the glucagon requiring ones. (bad,bad, BAD to have) And there is no "good" low but the ones which occur in the comfort of ones own home & respond rapidly to the ingestion of glucose aren't too bad.

None of that for me. It's either the brain shakes/freeze in the middle of class or the "non-low-low." It's really mortifying trying to get it together(public lows are horrible) & act like nothing is wrong,when no one else knows you yet(or that you have diabetes). That will change someday..but I'm not the sort of person to blab it out until I need to.(or,are friends with someone) The nursing instructors are extraordinarily competent, intelligent human beings who I think would actually know what to do if I keeled over but right now, I don't want it to get to that stage yet.(having to tell) I will have to(in a few weeks) when I go to clinicals,as you're required to disclose anything that might make you appear loopy. I do need to get (& wear)a new medical ID,for my old one is nowhere to be found.(in the meantime)

The other type of low is the one that feels much worse then it actually is. Case in point: yesterday's 10 pm 68 mg/dl,with NO units of IOB. I ate like I would knock it to 300 & beyond(44 fast carbs), fell asleep, woke up at 2:30 with a 69, ate another 35 carbs & was 133 four hours later. You feel bad because you are dropping quickly, not so much from the actual bg. Or being 108,not low,but dropping extremely rapidly(ton of IOB) & needing to treat it as a low. I treat something how it feels,rather then what it is,when in doubt.All the exercise(tramping all over campus) I've been getting is no doubt triggering these lows.(& until I get some sort of a pattern,all I can do is pack a jar of tabs/3 juice boxes in my backpack,to nip anything before it turns major) Lows will drain every last ounce of remaining energy(& then some) from you.(school plus lows=no desire to go to the gym,ever again) I am exhausted.

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Tuesday, January 18, 2011

The Dexcom Song

(this is a semi-true story, and is to be sung to the tune of "The Bricklayers Song". All of this didn't happen, but life gets pretty bizarre on the night watch.And last night, was particularly bizarre.)

Dear Maam, I write this song to tell you of a fight

Tween' me and my odd Dexcom, it twern't a pretty sight

Me body is one massive bruise, my glucose 403

And I think that school (in any form) is not for me today.

It was a normal Monday night, basal checks galore

Alarm clock on the ready, juice and tabs on drawer

My Endo said it must be done, and so it was to be

I prepared to follow out The Royal Endocrine Decree.

Now, all went well initially, I was just 123

I felt quite smug, and told myself, it'd go just perfectly

A job half done, I smuggled down, prepared to sleep, to dream

But all was not as steady as would otherwise seem.

At 12 am the Dex went off, I shot up in my bed

Confused, dazed,alarmed...and thoughts raced through my head

The house's aflame, or else I'm low where is that meter when

Your legs are made of jello and the world is in a spin.

My Dexcom shrieked, it was telling me once more

But in me brain I had to know that I was low for sure

I slipped from bed, crawled toward the light, and bumped into a chair

Things were (at that point and time) a little less then fair.

My meter finally in my hands, I got a 52

But tabs, coke, cake and candy would simply not do

I must have juice, and juice alone, no matter what the price

The former lures of chocolate now failed to entice.

Now the juicy-juice spilled over, and dribbled down my face

As I sat there, sweating, shaky, a hypoglycemic daze

It hit the rug, and stained quite blue, and as I finally rose

Left trails to the bed where I would fitfully repose.

Well, I lay there groaning on the bed, and thought that that was that

But then a blur streaked through the door, our gray and fuzzy cat

He jarred the tabs, and down they fell, pelting me full force

As I lay there( cringing) I had PWD's remorse. (apparently, you CAN be too prepared)

I snatched up sturdy Dexcom, and threw it at the wall

But it met instead with fuzzy cat, who then began to howl

My husband woke, and chaos reined, just who is to be blamed

But I'm going with the Dexcom, and that will be maintained.

Monday, January 17, 2011

FDA: Build-A-Pancreas


Dearest FDA,

I've been thinking,lately,of how despised you must be (not just among the D-Community,but among the entire medical community) Everyone wants a cure, yesterday. Your job is to protect us from those drugs & devices out there that (properly or improperly used) have the ability to injur,maim, and kill. I get that,I really do.( & I'm glad that you exist)

But I have diabetes...and sometimes,it feels like everything is "five years away." A Cure. Inhaled Insulin. Smart Insulin. An Artificial Pancreas. And on the subject of the later,the minds at JDRF & the clinical test sites know much more then I do about how it will play out. But they are dependent on us,those of us who live with diabetes..without us,it goes nowhere. At the end of the latest research study,my "Big Picture" got a little bigger.

Right now,it's in phase 2.(still very stuck in the clinical setting) They say phase 3(moving to outpatient,probably a hotel) is still a couple years away. In the meantime, research continues as to how to best incorporate various features for each & every user, a "build-a-pancreas" as you were.( not everyone needs,or wants,the same features)

And so, this led to an hour long discussion (via phone) as to what features would be most important to me. It was not the standard "I need the darn thing to shut off at 80 mg/dl so that it doesn't OD & kill me" type of conversation( because,not everyone needs that) it was more of the nitty-gritty,get your hands dirty kind.

Because an artificial pancreas is to be MORE then a glorified CGM.(& mine,is not too glorious at the moment) So you need to know if you're high or low...a CGM will alarm,& tell you that. The real issue here is the accuracy of said CGM & you can't really trust your life to it, it's lagging behind actual blood glucose by 15-20 minutes. Blood
Glucose calibration is still necessary, as are "safety parameters".(below or above certain bgs,an alarm would sound) That would be largely user defined...hence the need for initial data collection before setting those parameters. Still, I would really like for it to do SOMETHING automatically(initially), for I'm doing everything anyway & it couldn't be any more disastrous then what I've got now. (right now,even an integrated pump-CGM would make me deliriously happy) The action of the fastest acting insulin is still not fast enough to prevent a postmeal spike.(outside controls & ability to override system is a must) Technology is just not to the "slap it on and forget about it"'s a work in progress.

All I ask,is for you to give it a chance.There is so much potential in it,& it blows the socks off what we have now. The moments that I didn't have to worry about my blood sugar are the moments I will treasure forever.( I,and everyone else would like more of those moments)



(type 1 for 12 years and counting)

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Thursday, January 13, 2011

Middle of the Food Chain

In the past few days,I've discovered that my aspiring goals lie more towards the middle of the hospital food chain, and less towards the end. I've never doubted that nurses were key to a patient's survival(and wellbeing),but the fact that there is oftentimes a whole host of folks below(and taking orders) from the nurse is well,quite scary. Of course,ultimately the orders are supposed to originate from the doc...but they might see a patient for 10-15 minutes a day (kind of like upper management in a company I used to work live up in their ivory towers & it's the nurses (aka floor managers)who really get involved in the nitty gritty EVERYTHING of patient care.(nurses really are expected to know a ton of stuff even if most of them know nothing about diabetes.Really,it's mostly not their fault,but it will always bug me that it will always be seen as a "you-deserve-what-you-practice" disease.(among many seasoned RN's) Seriously, what happened to compassion?but that is my unique soapbox,as someone living with the disease. I think at some point I am in for an attitude adjustment...not everyone gives a flying flip about diabetes management & I do not get to play doctor.Or criticize the doctor.(not as a student,at least)(velcro mouth shut) My role is that of a sponge,listen,learn,(wipe up human secretions)& apply under careful supervision.

Students are towards the bottom. (not important to much of anything,& more of a liability then anything else.Unless you're a student MD, then you're probably slightly higher in the hierarchy. And while each and every job in patient care is important,the ratio of patient gratitude/etc.gets exponentially smaller the farther down the food chain you go...not many people thank the janitor.(they should, but don't) There are many other positions in this food chain(therapists, etc.) which I have no idea where they fit in..but this is just my initial impressions. (as a

Monday, January 10, 2011

First Day: Spring '11

I am ready. Books are bought,tuition/etc.accounted for,& accessories/iPad apps installed/purchased,in preparation for the big day.(also,glucose keyring installed on backpack,for the inevitable blood sugar drop in the middle of clinicals) The question is,will the weather cooperate(100% chance of 3-5 inches tomorrow...which probably means they will postpone it till Wed.?)That bums me out(6 months from now I will likely wonder how on earth I could be so enthusiastic about such a hardcore program...but for now, I'm that enthusiastic little kid on Christmas morning.)

I can't wait.

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Wednesday, January 05, 2011

One Wish

Close your eyes. Count to three. Spin around,& repeat after me...
There's no place like home. There's no place like home. There's no place like-

Oops,wrong wish. I'm talking about wishes of the earth-shattering variety. Anything at all.(of the non-supernatural variety) Go.

Got it? (no wishing for 7 more wishes)

Ok,if you wished for a cure for diabetes...well, so did I. That's a pretty popular wish these days.

Now wish for something else. A million dollars,a hot new sports car,anything.

Know what I want? I want a personal meter that reads my magnesium level,that doesn't require a trip to the lab & vial of blood, & another week for the doc to get back to you to get. It's gotta be possible. I mean, if you'd asked a diabetes specialist back in 1968 whether PWD (in the future)would have at-home blood sugar monitoring devices he'd likely have shook his head & wonder what you were under the influence of. But the market (for such devices) just exploded,there was such a need for them that of course it was going to become a reality.

There is not overwhelming need for a "magnesium" meter. Although, if other things(CBC,etc.) could be analyzed simultaneously there might be a demand for it. I'm not a Chemist,engineer,or mathematician so all I can do is dream...but it sure would put the management of my problem more "in my control" & personally,I think docs would be all for that.It's not as complex and difficult to manage as D is(numbers don't do much changing) but what I've got to work with now is compatible to the Dark Ages of D-Care. It's based entirely off how you feel,with the once-in-awhile blood test. I don't feel confident about what I'm doing's hit or miss. Fortuently,the margin of error for missing is quite generous (you don't get into trouble much) but if I could know, & test,& take matters into my own hands(up the dose) that would just be the most awesome thing. My levels would be in-range,& I could treat the slight lows more aggressively.

I could be waiting on that wish awhile...but a girl can dream. Maybe one day something like that will be developed.

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