Wednesday, March 09, 2011

The Middle

In three weeks,there is a plan. That plan involves 80 new white-jacketed,scrubs & gear clad nursing students to be unleashed among 7 healthcare facilities for the long-awaited "clinical" setting.

Frightening, I know. But before we get there,we have 2 classroom tests, 2 "oral competency head to toe assessments" another math test,an online test,and a week of Spring Break to survive. Quite frankly it feels like a lifetime away because if you fail at any step in between you can't go to clinicals and flunk ze course. The oral competencies must be completely memorized (you're doing an actual physical exam in front of the instructor) and the whole situation is a step beyond test anxiety.(multiple choice tests just don't compare) If you go blank,you're good and screwed.

But if you survive,you're awarded with a 1.3 week long "Spring Break" (some of which will be spent studying,still,it will be nice).And when you come back,get involved in real live patient care...it's just a hop and a skip away till May,& you'll get a break for good.(for a few months)One Semester will be done...3 more to go.

I can do this.

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Friday, March 04, 2011

The Not-So- Magical Express

Somewhere between the intersections of Ketone Valley and DKA Junction, the grand 'ole Diabetes Express made an unscheduled "pit stop" at 3 am last night. It could have been the fluids situation(getting extraordinarily low) or something else. All I know is,it sure felt like all of that. I was hoping the parchment-like thirst wasn't anything critical but the line on my Dexcom revealed a 3 hour spread in the 300+ range & there would be no "ignoring it." Fingerstick revealed a 355 mg/dl.Out came the emergency syringe(I do not mess around with bolusing in such situations). Something had obviously failed big time,but I was too brain dead to fix that something. My blood cells were bathed in glucose,& my "super system" circulatory system felt as sluggish as the Washington Beltway on a Friday afternoon.My kidneys were having their heyday,as my lungs also worked overtime to get rid of the poisonous CO2 accumulating,compliments of the ketones. I felt like a giant prune,& going to sleep never felt so easy but in that moment,there was still a chance to turn The Diabetes Express back to the sunnier (& cheerier) land of Euroglycemia. Chugged two cups of water to chase the ketones,& crawled back in bed.




(down to 201, & non-existent ketones)
Today is another day.(& one that fortuently doesn't require going to school.Youngest brother is getting married today.) Being hit by the Diabetes Express takes a day or so to really recover.(it's amazing how fast you can get into trouble & how long it takes to feel human again)

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Tuesday, March 01, 2011

Diabetes on Demand (Disclosure)

"Who here has diabetes?"

Those were not words that I EVER imagined coming from any instructor's lips, let alone the department (semi) head. But flow they did, in response to another student's inquiry on a diabetes-related topic.

"Oh, I do, I do, I do!I got it when I was 16.5, which isn't as sucky as some ages to be diagnosed because you can take full responsibility for your disease,and can wield a needle like a pro, but still,the only good age to get diabetes is age 86(or whenever you're in your final illness) when you don't really care that much because you're nearly dead..."

(Wait a second. What am I about to DO? I'm about to tell a group of people (of which, 50% will probably turn out to be food Nazi's and hound me relentlessly for the next 1.5 years (till graduation) about how I should manage "my" diabetes. They don't need to know. This is a teachable moment,but it is not "my" teachable moment. There are 30+ people in this room & my not saying anything,will not forever influence/ruin their careers.) And so my hand(burning with the urge to go UP) stayed down.

"Some of my student's in past semesters have diabetes,and have better perspectives on that (various diagnosis ages) then I do."

I thought about that, and while it's certainly up to the individual in question whether they want to share that I don't think it's something an instructor should be asking the class. That's an extremely personal question. I have diabetes,and at this point only the disability office knows it because they're the only ones who need to know. It still feels a tad weird though (the amount of candy that flows through this class is like being in kindergarten)like you should say something (about why you're not chowing it down like the best of 'em). Nothing against the candy in question, it's usually my blood sugars that I don't want to chase for the next 6 hours. Regarding different diagnosis ages,things are very different when you're dx'd at 6,16,26, or 60. But at every age, the patient can be involved in SOME way. (6 year olds are very smart & can get concepts before adults do) Being dx'd at 17, my childhood was D-free and candy was candy.(not something to be fought over, or something that would kill me.) I didn't have major food issues because I was diagnosed in the age of carb counting(and we always ate pretty healthy, so no changes there either)Getting diabetes is so much more then "anxiety over insulin injections" such as the examples in class are portrayed. It's more like anxiety over hypo/hyperglycemia/blindness/stroke/heartattack/kidneyfailure/amputations/neuropathy/foodbattles/dating/marriage/childbirth/job/healthinsurance/bloodsugarswings/earlydeath etc.etc.etc. I guess they choose that (as something that the nurse can actually "do" something about.)You can't dive forehead deep into something, you've got to take it by degrees.

On the plus side,I've survived three tests,a math test,a presentation,and a paper (with mostly A's) so I'm not just surviving,I'm doing pretty darn good. Switching to disability accommodations in the testing center was a really good idea.(less stress,lower bgs,and the slightly extra time have really improved my test scores)I should have done this a long time ago.

Wednesday, February 23, 2011

The Most Awesome Thing

I've thought about this, and the vast majority of the stuff that I've done with diabetes is just general life stuff. Or, as a direct consequence of chronic disease. And I feel like (life-wise) that I'm JUST getting started (on the grand and glorious degree seeking, family, etc. Things that one could feel pride over,I can't really yet.) Jobs I've disliked(but stuck with for the insurance)...surgeries, hospitalizations, research studies that no sane person would ever subject themselves to, vacations spent at FFL(etc.) No one really wants to hear THAT. (yeah, being alive is a pretty major accomplishment but its often because of D, not separated from it) I have gotten married, stayed married (thus far),moved out on my own (for two years-before getting married), bought three cars,and self-sustained myself without having to file for bankruptcy (so there's that).

But there was one time that I did feel like an advocate for type 1's everywhere...when I went on Fear Factor. (I won't repost it here, but you can access it via the link) That really got my adrenaline going..& although I didn't make it very far,it helped me get over the "type 1's can't do things of that nature" mind-block. Type 1's (or 2's) can do whatever the heck they want,and even WIN. (see also, The Amazing Race winners, one of who has type 1) I would love to be on another game show (of that nature) if the chance presented itself. (I tried out for Jeopardy once,and almost made it past the first draft, was off by about 2 questions.That was a level of stress far beyond jumping off a building.)


“This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/introducing-the-dsma-blog-carnival/“

Saturday, February 19, 2011

The Blood Sugar Diaries

"How's your blood sugar?"

"What's your blood sugar?"

"Have you checked your blood sugar today?"

"What's your blood sugar generally range?"

I've gotten alot of that lately,& quite frankly,it's driving me up the wall. Quite frankly,there is never a time where the PWD cannot think about their blood sugars and today, I may be 300, tomorrow,30. The health care providers in question aren't asking you your latest a1c...they are asking you,judging you, on your blood sugar at that very minute. An hour from now it may be a whole different story. Not to mention they don't plan to do anything about it. (except label you "noncompliant" & "out of control" anyway) In nursing school, the label non-compliant is tossed around every three sentences anyway...& most of the time,gets applied to the patient with diabetes. It is an actual nursing diagnosis and you HAVE to use it. Words cannot express how much I loathe that term & how it is a cop out for figuring out what us really going on. At some point, I will write a paper on how that term needs to be abolished.
Anyway....back to the blood sugars.Why is that a topic that gets zero privacy & always gets asked?(I get that they need to "know" it but other sensitive topics,like "how many times have you pooped today?" could be construed in much the same light.And docs don't generally ask THAT.) I am really tired of talking about,discussing and dissecting and digressing and dealing with the topic of blood sugars. Yes,I do it everyday...it's my life.And yes,I do consult my Endo/Diabetes Educator on occasion. But everyone else (in the health care field,& the diabetes police) get on my nerves.(not the online community,they "get it" & I dint mind discussing online) I guess that's why I haven't been to a pump group meeting in forever because even there it tends to get a bit grilling. They all have a1c's in the 5's and 6's and are a tad unbelievable. (not that they aren't nice,but they are just in a totally different world) I need to hang out with REAL PWD. People who forget/leave their pumps at home,who have eaten themselves from 40 to 400 and will admit to having done so. People who don't claim to be perfect.(I also need to to figure out a better answer then "kindasortofnormalrange" which tends to produce blank looks & even more grueling of the blood sugars.) I guess I just hate that it's not considered private at all...& while I'm the one who manages it,the peanut gallery can still have their say about how much better I could be doing. (much like backseat drivers telling you how to drive a car)

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Wednesday, February 16, 2011

Casualty: 1900's (YouTube)



My latest tv show addiction. As I don't live in the UK,I just found out about it.(via Amazon Video on Demand) It's kind of like "ER" (early 1900's style) It was a totally different world..gloves were used only during surgery & nurses weren't allowed to get married.(they were married to their jobs)People died routinely of infections,(staff caught them from patients) there were no antibiotics. (they did practice isolation techniques but weren't very effective at containing outbreaks)
Regretfully, it only had two seasons.(and I think that's all it will have) I've finally figured out that the English title sister would be a charge nurse in the US. (see also: My Experience in an English Hospital)I guess some hospitals still go by those titles.(if not all) This show is like crack cocaine,it's got the doctor/nurse romance, the spurting blood,the women's right issues,and pretty much everything a good medical drama should have.And it's primarily from the nursing student (aka "Probationers") point of view so it's really interesting seeing how that differs from nursing student's today.(and yet,so much is the same)I highly recommend watching them all, if you enjoy things of that nature.

Thursday, February 10, 2011

Veni, Vidi, Vici

I studied.


I came, stowed all beeping electronic devices in my car,and walked into the classroom with a roll of glucose tabs in my pocket.


I(along with the rest of the class, row by row) came up and stored every possible physical belonging AT THE FRONT OF THE CLASSROOM NEXT TO THE INSTRUCTOR'S DESK.(it was like being in Kindergarten,the only thing you were allowed to have were 2 pencils(which must be non mechanical) a sheet of paper,and your test/scantron.)

And I took the test.(under meter/blood sugar anxiety)

And I went back out to my car,grabbed my meter,and tested 325 mg/dl, 1 hour and 30 minutes later.

I really,really, really need those accommodations..its one thing worrying about the test(I shouldn't have to worry about my blood sugar too). I'm not that likely to go low-I just need the freedom to be able to check(and adjust) at will. It's very obvious that I need a cranked up basal rate(and possibly an adjusted mealtime Insulin/Carb ratio as well) One test passed(grade wise)and yet it most definatly wasn't a success, diabetes wise.One Stress-a-thon seriously shoots the whole day's numbers to pot.
Still waiting on the paperwork from my Endo's office,(for the accommodations)and it looks like I'll have to take another test in much the same manner.(before it all gets straightened out) I also don't know exactly how the accommodations will play out-perhaps I'll have to take my tests in the testing center.

Wednesday, February 09, 2011

YouTube: Study Skillz




Love this video!!(it captures well the amount of knowledge flying around that you're expected to learn/apply/regurgitate on command)

Friday, February 04, 2011

Owner of a Broken Brain

I'm studying this weekend for a test...my first of many. It mattereth not that it is Super Bowl Sunday, & it mattereth not that I have a horrendous cold/simultaneous monthly occurrence (sorry for the TMI,it is what it is), & it mattereth not that there are also next week's classes to get ready for..somehow I have to stuff 3 weeks of knowledge into my already stuffed-up head. I have to meet with various advisors as well.(next week,it's still really overwhelming)There is no time to be sick-if you miss 2-3 occurrences, you will fall so far behind that they consider you not able to keep up with the program & kick you out. It's scary,& simultaneously annoying. (if I have infected the entire lab group/instructor with my 7 hours of sneezing,sniffling,nose blowing,& coughing, don't blame me. I didn't mean too but you can see why I can't leave) I am still very overwhelmed & I'm pretty sure that feeling will be sticking around awhile.(keep swimming,try not to drown)



And last Saturday's run to the cupcake shop/JDRF summit sadly did not extend it's happiness into this weekend...my husband ate the last one today.Was extremely good while it lasted though.(loved,loved,LOVED the peanut butter frosting one)Cupcakes rock. The JDRF Summit was excellent as well.

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


Jan.17,2011

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" stage...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)


Cordially,


Heidi

(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 for...docs 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
student)

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 either...it'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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Thursday, December 30, 2010

Ringing Out The Old Year

I don't know about you, but any recent luck o'the averages I may have had has been irrevocably ruined from the Christmas holidays.

Ok I tried to be a good D...truly I did. But the goodies called my name,(over and over) the set changes became fewer,the Dexcom crapped completely out,(of warranty,too) & I just stopped caring what I was,I just wanted to have fun for once.(without inconveniencing anyone with a low). Throw in some hormones and you have the next episode of "Blood Sugars Gone Wild."
All of which equals an average bg in the mid -to-upper 200's.

Yep-not good on the a1c, & unfortuently,the holidays have not yet ended..there's still my side of the family.( New Years Day). I need to get back to regular life, routine really helps.(that and knowing the carb count!) Fortuently,my next a1c isn't till April so there's lots of time to undo that damage. I sure don't want an a1c in the 9's.(after making significant progress on that front)

I'm also starting on a low dose of Levothyroxine (25 mcg) to improve my TSH. My Endo was not wild about the idea,but she agreed to start it.My thyroid antibodies have gone up,my TSH is in the middle of the spectrum(still normal,but not "good") Hence the minuscule dose of (Synthroid). I need my thyroid at optimal levels. It was hard to get my Endo on board with it,she muttered uncomplimentary things under her breath(as to the overkill tactics of certain other specialties) but did agree to start it. It's not going to make me hyperthyroid, it can only help.

Have a Happy & safe New Year,all!

- Posted using BlogPress from my iPhone

Thursday, December 23, 2010

Elevator Shift

(this is a story of an elevator encounter of the life-altering kind)

It was his eyes that told the story. They were the sort of eyes that you could go swimming around in,lose yourself in the passage of time...and wake up to find that 20 years had gone by,unbeknownst to all involved. There was a lifetime in those eyes.(magnetizing)

It was the summer of 2003,& I (was very single & uninvolved,ok folks?) had gotten on the hospital elevator,punched my floor number,& was set to tune out the various individuals on board..for I could think of nothing else beyond my impending "Diabetes & Driving" impatient study.(involving a simulated driving game & "controlled" hypoglycemia,I would murder virtual cows right & left.)

"Are you going to the hole?"

I semi-turned, & looked at the person who had asked the question. "The Hole?"

"Yeah-admission?You look like you are." He coughed,& the spasms wracked his thin frame. It had the sounds of cystic fibrosis,of chronic disease,of a life spent in places like this against one's desire & will.

"Ah,yes,the hole. I am indeed."
(I wasn't quite sure I wanted to spill out my medical history in the very public elevator to a guy I didn't know) And did I really have "the look?" I thought PWD were not supposed to look sick. Not like I had any wires or tubes coming from random orifices on my body.(yet)

"Take my advice...don't let the residents near you,they're real bloodsuckers & can't hit a vein to save their lives."

(this advice did not seem to phase the several white coats on board,although,I laughed. Loudly.)

"Duly noted". I was looking in the eyes,& feeling sorry for the suckyness of the situation for people with such chronic diseases & lucky just to have diabetes. We were the same ages...& yet I would likely live 40 years beyond what he would. I didn't know the half of the depths of the disease & dying process. And yet,he was living with his disease in the same way millions must...most of the time,it felt like I was ignoring mine.

The elevator clanged,6th floor.

"Take care." (I felt I needed to say something) "Hope you get out of here soon."

"Yeah,same to you. Stay cool."
IV pole in hand,he took off towards the nursing station on the heart/lung floor. And I continued onto the 8th floor,where the diabetes study awaited.(it was the most grueling,most demanding study that I have ever done,& 48 hours into it my electrolytes would drop(caused by the blood-letting & insulin clamps)resulting in them dropping me from the study early. I had no complaints to that,since they were still giving me full compensation & I just wanted to go home & die quietly,it was the first time my (as yet undisclosed) Bartters Syndrome would cause a problem & it would take months of unsuccessful dosing before I would see a nephrologist,& be diagnosed. At that moment,however,6 additional hours into IV's I just wanted the Endo to let me go home.I hoped I would be ok,and I no longer felt like I was having a heart attack right there,& although still very shaky I could walk out to my car & drive so she let me go.I went home & crashed for the rest of the weekend.)

I couldn't shake the sense that not only old people die in hospitals...22 year olds did too. All. the. time. And yet,they were one heck of well-adjusted individuals...they lived their lives knowing that day was sooner,rather then later. I think most PWD think "it will never happen to me" whereas most other chronic diseases know it will happen to them.(I'm not saying diabetes is a cakewalk but compared to CF it is)

That day,I got another perspective on life with a chronic disease.(& another idea of what I wanted to do with my life,should I ever become an RN(research,peds,or a CF nurse coordinator) This day, I still want to do something along those lines...& next semester, I shall be joining those nursing student ranks.(at last) The world needs more then a few good nurses.I know what being a patient is like...& that will make me a better nurse.


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Friday, December 17, 2010

The Top Seven Holiday Gifts(for the PWD)

#1 For the Dexcom(er) (or Navigator user) in your life... I recommend one of these. You can get small camera & phone cases at any office supply store.(such as Office Depot,Staples) And I've found it to be much more useful then that generic "skin" they provide.(for the Dexcom) Yes,the skins look snazzy,but that feature really doesn't help me locate the Dex any quicker from the depths of my handbag...nor does it have a clip on the back.This does,and it's solid-does not get knocked off five seconds later.And I can find,& unzip it quickly,because it has a unique shape compared to the hundreds of other things that reside in said handbag.



#2 Music Player Cases

(looks like small backpacks)




I'm a fan of jazzed up meter cases...& these are perfect for the job,holding the meter,strips,backup vial,infusion set,syringe,roll of glucose tabs,& the Multiclix lancing device.(IMO,the greatest lancer ever,& no,I'm not being paid by Roche to say so,I am way too uncool for the likes of Roche. The Multiclix is just awesome...& better then the Delica,IMO.
These cases have several zippable compartments & a belt loop and are really quite the on-the-go accessory of the year.And I'm sure they exist in solid colors..for the male PWD in your life.

#3



I found this ornament at CVS..& it immeadietly found a warm fuzzy spot in my heart.(& a place on our tree) Love,love,LOVE anything diet coke themed.

#4


Cup-Cake-y lip gloss. (I prefer the CVS, or Bath and Body Works brands) So very yummy,and completely free (of the need for insulin). Of course, this often has the side effect of making one hungry for REAL cupcakes (and a trip to a real,live,cupcake establishment. More on that in a future post.) A gift card to a cupcake place is also an entirely appropriate present. (if the individual can cover such dietary excursions with insulin...I realize that not everyone who reads this is a type 1/family member of a type 1.Moderation is a must, for anyone.)

#5 If it's jewelry you're looking for,the JDRF and ADA have several new unique choices.(ideas gotten courtesy of Diabetes Living magazine)

- "Katie's Cure" (designed by a 12 year old with type 1)(Proceeds to benifit individuals living with type 2 diabetes,but that's completely beside the point) It's a very pretty design.

- JDRF charm bracelet. It would be cool if you could have the date of dx engraved on this(for $50,that should REALLY be an option)& I'm not sure I'd ever buy this,unless I had more money then I know what to do with..but I like the design.

- Diabetes Awareness bracelet. Hand engraved, in your choice of multiple diabetes sayings.($75)

- If you're looking for something much, much cheaper(and who isn't, these days) head over to the DRI & snag yourself an "I'm Tired of Diabetes" bracelet. It's made of recycled tires(environmentally friendly!) and the cost ($14.50 won't bust the bank.

-Finally, you can get an official Bret Michaels "Live to Rock, Rock to Live!" bandanna or an ID (I decide) tag from the American Diabetes Association.

#6
The Stupid Sock Creature. (now if they would only make the Stupid Hand Creature,they'd be all set) Good for a few laughs(and endless hours of preschooler amusement)

#7 And lastly, you can get a free Bayer Contour USB meter (along with 25 strips) at Walgreens. (until 01/01/2011) Go here, print out a coupon (for $20 off) and they'll adjust it down for you (it's on sale for 9.99). Or, you can find $10 off coupons for both the USB and the Bayer Didget in their pharmacy diabetes magazines.This is not just another "free" meter offer..this is a snazzy meter( with strips), which makes it a pretty generous deal, IMO.

Thursday, December 09, 2010

Twelve Years

Dear Diabetes,

Tomorrow marks 12 happy years of being joined at the hip.And like every morning since then, I've woken up,checked my blood sugar,& taken insulin. Some things blur with the passage of time.I don't remember what an 1100 blood sugar feels like but if I see or smell a Kendall brand alcohol swab my mind takes me back to that moment in a flash. No other brand but Kendall does that.It was a night of strange smells,sights,& sounds...which may well be imprinted permanently in my memory.


Like I do every year, I'm celebrating our Anniversary with great fan-fare. (I hope you don't mind if I bring along my husband) Dinner, and a movie (Voyage of the Dawn Treader)sounds like the perfect way to end the day. One thing about our D-Date,it seems to be a popular day for new movies to come out.

You and I have worked our butts off this year,& have gone from a number that was so bad I couldn't even blog about it to a most-recent 7.1.While that isn't under 7.0,it's a .8 improvement over the last time & was met by enthusiasm from our Endo & deemed acceptable enough for plans involving future offspring on this Earth.(we will keep working on said a1c,obviously) I really wish my a1c had dropped more,but it is what it is.Further testing revealed several whacked out hormones (trouble with the thyroid,yet again) & the jury's not out yet on whether I'll have to start Synthroid/ other drug.As anyone's with D who has gone this route knows, it's not just the simple matter of getting your a1c in line. But with an endocrinologist & a maternal-fetal medicine specialist working on it, I'm sure they'll get those hormones precisely where they should be.(unlike blood sugars..those levels are easier to get into line) There is much to say on this topic,but the relief of not having one's Endo stare in horror at one for even considering the thought is the victory of the moment. I have faith that it can happen.

Bring on 2011!!




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Monday, December 06, 2010

December De jour

It's that time of year again...the snow lies thick on the ground(or soon will,if it's anything like last winter), it's bitterly cold and nasty and doesn't lend well to functional toes,fingers, or glucometers. Starbucks & Swiss Miss are absolute must-have's.(yes,I drink Diet Coke year-round but in winter I need something to warm me up) And it seems that life gets even busier, as the "flurries" of day-to-day tasks cascades into a blizzard.(Look for me sometime in January,as I don't expect to be doing much blogging)

On the agenda this month:

*Aforementioned school paperwork, most of which is financial-aid/scholarship oriented. Also a CPR recertification course and yet another physical exam(does the one I JUST had in October (for my surgery) count? Of course not) which shall involve booster shots and blood titers(for every known communicable disease out there). Medical school can't involve any less paperwork.

*Changing health insurance plans.(this being that magical time of the year known as "Open Season," which, for my non-US readers is when one can switch(or get) health insurances without fault for pre-existing conditions.For an individual with a chronic disease,this is one of the few opportunities to get instant coverage. ) My husband leaves this to me, as he rarely gets sick,takes no meds,and has never had a cavity in his life.(in other words, the opposite of me) Our current plan has hit rock bottom-everything costs a ton, & injectables go completely off the formulary beginning next year. Although this is to be expected with all the recent insurance company/Obaminination changes,our particular plan has essentially doubled EVERYTHING-monster deductibles,no diabetes education coverage,etc. and the time has come to jump ship.(before we sink) I'm grateful for the choice of several options,but it will be a monumental choice as I consider what parts are vitally important to me & which parts are less so.

NEED:

- diabetes supply coverage (for pump supplies,insulin,strips, and CGM) via mail order with acceptable copays.
- NO cap on the number of test strips.
- catestrophic coverage cap
-low pharmacy rx copay
-outpatient infusion services covered (this is a biggie,because if I need more magnesium infusions it is very expensive & not otherwise affordable)
-coverage of injectables (such as Symlin)
-good dental plan
-free Diabetes Education Visits
-complete lab & tests coverage

I'm very much looking at this from the diabetes point of view..I want the freedom to see my own endo and follow my own diabetes plan. Access to an educator is a must on my list,(and one that current insurance decided to stop covering completely) since few endo's have the time to work with you on the nitty-gritty, day to day stuff. I guess after all these years I should know how to get myself out of the holes I dig,but they have perspectives that I often times, don't. I live it..the questions and problems never go away,& have numbed my brain so that if the answer were right in front of me, I wouldn't be able to see it. I need the fresh perspective.
I've heard only horror stories about HMO's,and I'm not sure I'd be brave enough to go that route. Freedom in physician choosing is very important to me, and I'd rather concede on a less important point(like the amount of the copay). You have to choose the plan that makes the most sense financially. Life is about more then diabetes..surgeries,tests,random stuff comes up and those possibilities must be considered as well. Decisions, decisions.(and I can't make this one lightly)

* Getting every last RX filled before the deductable/max reset to $0 and everything costs an arm and a leg again in the New Year. (to be done, prior to switching insurances, obviously) We don't have an FSA(flexible spending) account...that's probably something I should seriously consider. Could really save money there.

*Regular Christmas-y stuff..presents to buy, foods to cook,etc. and a week long stint on the Left Coast(come December 22) to survive. I cannot say I'm looking forward to the body scanner/patdown choice.(at the airports)

*Endo appt., continued hand therapy. Things are much improved on the arm front, there's now only a small localized patch of elbow numbness,a slightly weak pinky,and pain only if I lift something heavy. The scar is even starting to fade.

So that's what on the agenda, this won't be my last post of the year,but I won't be doing very many of them. Stay warm and safe, everyone.

Wednesday, December 01, 2010

The Envelope

I got an envelope the other day. It was gorgeously thick & screamed out "Non-Rejection" without me having to open it. But open it I did,with my heart hammering away in my ears & my stomach doing flip-flops in my esophageal tube.

Guess what. I am not "rejected" but I am also not accepted, I'm in that fuzzy grey area known as the WAIT LIST.

So I had to go to Orientation, a 3.5 hour affair which was great for everyone who made it into the Spring 2011 RN program but most disagreeable for the rest of us.You sit there,pretending you belong,but you aren't really "in." You're a wannabe who is hoping someone drops,but you still have to fill out the forms,get the all-inclusive Cootie Report filled out,CPR, and have your financial aid,etc ready to go at the drop of a hat for if someone does drop out & you could get in.

Maybe I'm at the bottom of the "wait list" & maybe I won't get in at all. I hate this not knowing.(it goes purely off GPA) It's the 5th layer of Dante's Inferno,doing all the work & still not getting in & more & more I wish they'd have just rejected me outright.People have till Jan.18 to drop the course...that's a long time to be without an answer.(Everyone who is on the list knows exactly what to plan for) I'm in a state of educational limbo(knowing that I qualify but should I just reapply? or just scrap the whole nursing idea entirely) & it's just really hard & depressing right now.

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Sunday, November 28, 2010

A Surgery, A Rice-ectomy & The Diabetes Transplant Summit

It went exceptionally well. Although my blood sugar was not well behaved in the least(the instant I rolled out of bed @4:30 am, it began to skyrocket) 165 at 5 am,and 265 2.5 hours later when the nurse took it.

I was the first patient of the day..so as soon as they got me back there, changed,and an IV in, it was a whirlwind of anesthesiologist/nurse/surgeon & it seemed like no time at all that they were all ready. I really wasn't(as evidenced by my blood sugar-gave a several unit correction & cued the anesthesiologist that this sort of excursion was normal for someone who was nervous. I get like that prior to any sort of "nock out" procedure. And I know that sounds stupid,but that's how I am. The dude in the other unit(2nd patient of the day) was not anxious in the least.(I envied his nonchalance) I didn't like the blood sugar,but there's really not much you can do about something(hardcore correction) w/out flirting with hypoglycemia.(they were perfectly ok with it) My sole request,was for a hearty dose of anti-nausea meds,I wasn't worried that worried about the pain.(they did a nerve block & a pain med so I knew it wouldn't wear off for awhile)But I have learned that anytime I go under,there will always be nausea (waiting for me) when I wake up. The anesthesiologist (who caters to cowards) was very accommodating in that last request. Nothing was going to make me any less nervous,but at least the atmosphere was very upbeat.

And just like that,I was waking up from a dreamless dream (some 2 hours later),arm almost completely encased in white plaster at a 90 degree angle. There was no pain, or nausea(much to my surprise) just that fuzzy headed disorientation that takes some time to go away.

Blood Sugar: 276. Happy day in the morning. I corrected(one handed),& discovered just how hard it is to check your blood sugar with one hand.(I use the Multiclix,so I had to cock first,& attempt to hit my pinkie as I pushed down with the thumb) Sat up,getting acclimated to the thought of going home & got hit by a horrible wave of nausea & started dry retching. The nurse got me a smelling salt/nausea killer sort of thing, which smelled really horrible but did indeed knock that nausea into submission. Tried again 15 minutes later to sit up & was fine. The nurse also gave me some alcohol swabs(I never knew that those were nausea busters), RX's,and then the husband drove me home. Nerve block wore off about 5 hours later but I still was not in any great pain. More then anything, it itched.(the crazy,rip your skin to shreds itch) My mom helped out that first day.

The next morning, I dumped my glass of water into the cabinet drawer, flooding my iphone in the process. As soon as that registered,I grabbed it out, attempted to dry it off,& did an emergency Rice-ectomy (container,cover iphone with rice, leave for 24 hours) not knowing if it was truly the end for my phone or not.

That evening,I stuffed my arm in a sling & husband & I went to The Diabetes Transplant Summit. And there's not really much I can add to that(Kathy has said it all) but it was a very interesting experience. One of the participants made a statement that really stuck in my head,and that was "Good control doesn't do you any good if you're dead." Hypoglycemia is a very serious problem..& kills people every year.(how many,I'm not sure,but even if it were just 1 death that is a tragedy)
For these people, hypos were constant, severe, and life threatening. Every single day they dealt with that reality. They had the transplant(s) to fix that particular issue...not very many of them had secondary complications from diabetes. (although that can be another reason for having a transplant) One of them, Gary Kleiman, has been on immunosuppressents more then half his life(he had a kidney transplant in his 20's) For them,having to take immunosuppressents was an acceptable trade-off. None of them has to worry about severe hypoglycemia..even the ones who have to take small doses of supplemental insulin.(over time, the islet's die) And I must agree,if I were in such a situation I would take life w/immunosuppressents over no life at all. I think everyone who goes into those transplants is absolutely informed about the risks they're taking..but the bigger risk is not having the transplant. And I respect their choice,& the courage it takes to do that.

They are working on raising genetically "pure" pigs, for (future) large scale porcine islet harvesting. Of course,this is all stuff for the future...but it's a fascinating concept (pig islets & some sort of localized immunosuppression=possible cure?)

By the end of all that,I really wanted to go home,take painkillers, and not go to any more social events for the next week. It was exhausting,but events like this only come around once in a blue moon...& I'm glad I went.

(the next morning,my iphone powered right up...so it all ended well)

Monday, November 22, 2010

The Little Chevy That Could

This is Nugget.



Nugget is my 3rd vehicle, the last two having met unfortunate ends involving collisions & ex-cops & Northern Virginia intersections.Nugget is a product of the 20th century...they don't make Chevy Cavaliers anymore.(I've had several interesting run-in's with fellow Chevy Cavalier owners,they absolutely loved theirs.Apparently,it's a sub-culture..much like the DOC.And I do love my car,but it is a very basic car & it's racking up the miles..doesn't have as much gumph as it had in 2005.So,when it does quit,I have no problem moving on,and getting something from the 21st century.Technology is not a bad thing.)
And I believe I have matured, (in matters pertaining to vehicular operation)for Nugget is definatly the longest lived vehicle in the lineup. It was a Christmas Eve(make a rapid decision NOW) sort of deal,required by the family members tired of carting me around on a regular basis.

However....

It was a chilly November night,(about 2.5 weeks ago)& I'd had a long day(making the 4 hour trip down to Virginia to complete the research study). Spent several hours at the research study,went to a buffet & stuffed my face with everything I probably shouldn't,bought a gift for our 3rd wedding anniversary(and gotten carded for the first time in my life,which was very annoying.Worse then that-I asked the cashier if she needed to see some ID and she declined. So long, golden 20's) and was headed across the mountain to spend the night at brother #2's house (brother #1's kid had the plague).

Before doing so, I filled up the gas tank(for the 2nd time that day)& hoped the compensation would be quick in coming..for I'd spent a small fortune in gas from all those trips. And yes-it was absolutely worth it(free strips,pods,etc.)but if they didn't have both monetary & supply distribution it may not have been. Research studies can be educational, but they can also be a pain in the butt.(4 times down there=stick a fork in me, I'm done)

It was about half way up said mountain, as Nugget huffed and puffed away like the little engine that could, when it happened.


"YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAEAHHHHHHHHHHHHHHHHHH!"

Instinctively,my foot let off the accelerator,my eyes closed, and my body tensed
as I waited for 60 mph-flesh-on-metal-contact as a large buck glided strong,gracefully,purposefully, right in front of my vehicle.There was no time to hit the brakes or swerve..it went that quickly. It was like one of those Kodak moments-where the subject has just woken up,and the flash goes off right in their startled eyes.

Several heart-stopping seconds later, when there was no consequent cascade of deer vs car vs airbag vs chest vs flying off road, I opened my eyes. Apparently, large deer had successfully missed my car (and the one slightly behind, in the other lane) and made it to the median strip of the interstate. It took me awhile to truly relax after that,for I thought my car was a goner. I've hit small rodents before (NOT on purpose) but its the first time a deer jumped in front of my car. And I know its a common problem...the sides of the road have alot of dead animals this time of the year.

I'm just grateful nothing happened,for that deer was huge & absolutely would have totaled my car.Nugget lived, to run another day.

Friday, November 19, 2010

Ten Days

It's unbelievably great to finally NOT have a full arm cast on my arm.Its stiff,sore,numb,and looks like a staple gun went to town from my wrist past the elbow but the surgeon says its progressing well.Therapy starts next week. (it may take months to fully regain function)
(before picture)



Dr.Hand: Any questions?

Me: Can I blog now?

Dr.Hand: As long as you keep it light, don't over do it.

Me: Ok.

Man I've missed blogging.(had to get that out)

Tuesday, November 09, 2010

SIX things (#Dblog Day)

Hey, there.




Don't hit the back button just yet...I'm here to let you in on SIX earth-shattering revolutions about diabetes. Things you may not have known,but things you NEED to know because by 2050 you may be one of the "1 in 3" Americans who has type 2 diabetes. Or perhaps, you may be 1 of the billions elsewhere..diabetes is by no means limited to the North American population. The fact is, it's sweeping the globe,and if we don't get some answers soon both types will continue to wreak damage and destruction in their path. Most of my tidbits will be from a type 1 perspective, but the types have more in common then they have apart. (I feel...type 2 ain't no cakewalk either)


#1 This insulin pump is not an "intelligent" system. Far from it, I have highs,I have lows, I still have to feed my glucose meter blood 7-10 times a day & for the trouble,I get a so-so a1c. Diabetes is difficult 24/7/365. Diabetes sucks, even when it doesn't. A pancreas is a difficult organ to mimic.(In my opinion,the most difficult) And everyone's needs are different..it's all trial & error.

#2 Don't go it alone. The Diabetes Online Community is a support group wherever you are..places like TuDiabetes,Diabetes Daily,and Children with Diabetes Forums. You may feel like you know everything there is to know (and are a rock unto yourself), but take it from the introvert,you NEED support.(in one way or another,be from spouse/family/friends/other)And only other people with diabetes(or parents) truly get what you're really going through. You never realize just how much you needed it until you find it.(and then it's like,where has this been all my D-life!!!?)

#3 Ingested sugar will not kill you. Elevated blood sugars are what leads to complications...if you have type 1 diabetes,you cover that dessert with insulin,and if you have type 2 diabetes,you follow your health care provider's recommendations. I often have the exact opposite problem..I'll overbolus,& end up low, trying to avoid the high. It really bugs me when people don't realize that practically EVERYTHING has carbohydrates in it yet feed me the sweet potatoes when I'd rather have the brownie because it's a "vegetable" & must therefore be safe. Really,really, bugs me.

#4 Diabetes is Expensive. Even if you have insurance,they may not cover much,and if you don't have insurance,you probably don't
have the means to do more then stay alive. 1 bottle of fast acting insulin is now well over $100..pump supplies run hundreds of dollars per month,test strips soar into the upper stratosphere (despite not improving in accuracy),the costs of CGM'ing are over $300/month,(without insurance)
doctor bills,lab fees,other meds, the list goes on. And all of this is still cheaper then not taking care of the diabetes & developing complications. Something needs to be done to make it less expensive.(what, I don't know,I don't favor gov't takeover but how can you curb an epidemic if people can't even afford to treat their disease?)

#5 Insulin is not evil. Insulin is not bad. Insulin is not "a failure." Insulin is perfectly natural,non-D's produce sufficient amounts of it but if you have diabetes,you must inject it. (in one way or another) Insulin will not cause you to go blind, lose your toes,require kidney dialysis-improper management/cumulative effects of diabetes will do that. And I will guarantee you that there are many individuals(who have been on insulin for eons) who are happy,healthy,and have all their toes. Insulin is life,and we all need it.

#6 All types of diabetes need to be taken seriously. Any elevated blood sugar is a blood sugar that is going to cause damage,down the road.Type 2 diabetes is progressive,& often has co-morbiditating factors irritated by higher blood sugars. Whatever type you have,you must do your best to manage/control it.

Thursday, November 04, 2010

"Waiting"

(from the poem archives, dated December 6,2001. I thought it would be appropriate for National Diabetes Month)

"Waiting"

Last night I dreamed there was a cure
And folks were lined up at the door
This cure was real, there were no pills
No side effects, no doctor bills.

One shot, forever free to be
From this dreaded thing they call the D
Islet cells, that won't die off
Each time I get a stupid cough.

The freedom was a sight to see
The joy was real, unbridled, free
We chucked our meters,took a bite
This food would not cost us our sight.

(addendum)

Nine more years have come and gone
Since yesteryear's whisimcal song
We're waiting still, who knows how long
It's all so very,very wrong.

(it's weird how fast time passes when one is waiting on a cure. I'm sure that fifteen years from now,I'll be looking back at 2010 (in much the same light-like,whoa, those were the dark ages of D-care) & there still won't be a cure. Which I'm expecting,but it doesn't mean that I don't want one,bad)

Monday, November 01, 2010

A Lot to SAE

Sarah, over at Sugabetic has designed an awesome logo that very much represents what National Diabetes Month is all about.



I'm aware that my advocacy efforts will not go very far this year. And I can't do NaPoBloMo (for what would have been the third year running). My education will be limited to direct contact (i.e."Do not touch the pump. Do NOT touch the pump.")with health care providers.

In the works for November: (D-related)

November 3: DSMA. (Twitter chat)

November 5-6: Research study ends.(for now) Return (crappy Dexcom)equipment,fill out forms, participate in focus group. I really,really,really need the break. It's just been one disaster after the next lately,on every front. I really need to unload everything bothering me (equipment failures,communication failures,algorithmic failures) and get back on track. It's one thing when it works,its another,when it doesn't.

November 9: National D-Blog Day.

November 10: THIRD ANNIVERSARY.(actually,the have-surgery-on-your-arm-day) Will move the actual celebration of said day to the 8th,or 9th)

November 11- Diabetes Transplant Summit. I am really,really, really hoping to attend this, but I'm not going to assume that everything is going to be hunky-dory enough to do so. But at least the husband would drive me..if we choose to go.

November 14- The Big Blue Test. I shall move my pinkie finger up and down for 14 minutes,and then test my blood sugar.(in honor of the concept,and not being able to do any more then that)Which will probably make my blood sugar go up,not down,but last year's 35 minute sweat-a-thon had the same effect...so yeah,it's not about the blood sugar,it's about the education.

November 1-November 30 Have the best control possible...an a1c looms mid-December,& it takes hard core committal to bring about real change in an a1c. If you want it,its absolutely about those overnights and post-meals & pre-meals. Deciding to get serious about control (1-2 weeks pre-appointment) does not work. (been there, done that)

Wednesday, October 27, 2010

Dear Insulet

Dear Insulet,(Makers of the Omnipod)

Today marks my 2nd phone call to your corporation, in two days. You see,on Monday I had a pod that gave up the ghost a scant 1.6 hours post-insertion. So, I did what I was instructed to do...& called. And found out you guys can't replace it,because it's part of a clinical trial,yadayadayada. Ok, that's fine,at least your rep provided helpful info on occlusions.

So tonight,it happened again...post bolus. Only it was the actual pod that started shrieking (not the PDA) It didn't stop,& the only info coming up on the PDA was "low reservoir." I panicked, & called you guys again,needing reassurance that I could shut it up if I inserted a new pod.

"Hello, may I help you?"

BEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeEEEeeeEeee(etc.)ppppPP

(yes you can help me,save me from this insanity of this darn pod!)

"One moment,let me look up your info."

BEEEEEEEEEEEEE

(4 minutes later)

"I'm sorry,all technical questions are to be referred to the study endocrinologist. All I can do is make a note that you called."

You have to be kidding me,lady. It's 7 pm , office hours ended at 5, and I have NO way of getting in touch with them & you can't tell me how to get this thing to shut up short of running over it with a 2000 lb Chevy Cavalier?


"I was told I should call Insulet with technical issues."

"I'm sorry, we really can't. Call X(someone else)."

Awesome. Pod is continuing it's Shriekfest,much like a screaming infant refusing to be consoled.

Fortuently,when all else fails,you can send out a Tweet & get an answer in two seconds flat. I went ahead and deactivated the pod,it continued to shriek. Next,I poked it with a pin & that took care of it,25 minutes of shrieking later.

I'm just annoyed that I'm not considered a "real" consumer & if the darn thing dies,Insulet is no help whatsoever. (neither is the endocrinologist,4 hours away)If the AP ever does materialize,it will be no thanks to you guys.

Sincerely,

Alarming on The East Coast




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Sunday, October 24, 2010

A la Foodie Extraordinaire

Comfort Food is...




A half open grilled ham sandwich w/tomato slices & heavy on the mustard/mayo.





A cup of raspberry tea on a cold,rainy day.





The bottom of a Nutty Buddy.(solid chocolate tip combined with waffle cone = ahh moment)




Actual,fresh fried potato chips at a Renaissance Fair.





Something only I would eat.( don't ask)




A Diet Coke.




Fresh peaches,home made ice-cream. Out of the universe,good.



But I also think food is much more enjoyable when the blood sugars are 85, versus 285. It tastes different(even beyond the appetite issue), it tastes better.(IMHO) I was never someone who enjoyed the mental calculations of food/insulin..post dx,food became more of a drag(then anything else). I still like it,eat too much of it on occasion, (like anyone else-diabetes or not)but it lost it's innocence & spontaneity the minute I had to go on a diabetic diet. (eons ago) You can never quite be as blissfully ignorant as you were pre-dx,even though you now have the freedom to cover any carb with insulin.However,with an 85,I also feel more inclined to branch out in my carbohydrate repertoire since I'm not already high.(with a 285, I go more for the meat/veggies) I wish I had that freedom..24 hours a day,to eat what I want,when I want.(blood sugars still dictate much of it) Food can be both enjoyable & a total drag.


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Friday, October 15, 2010

D-Feast Friday: Easy Peach Cobbler

I've had a real craving for all things Peaches lately..& here's an easy & delicious recipe for Peach Cobbler. (no idea on the carb content, sorry!)

Ingredients

* ½ cup (1 stick) unsalted butter
* 1 cup Splenda
* 1 cup all purpose flour (white, mixed grain or whole wheat works fine)
* 1 Tablespoon baking powder
* ¾ cup milk (low-fat or non-fat are fine)
* 3 cups sliced fresh peaches, peeled or skins left on
* ½ cup firmly packed brown sugar(or Splenda brown sugar?)
* ½ teaspoon cinnamon

Options:

You can add 1/2 cup chopped pecans - they taste GREAT in a peach cobble.

You can also add other fruits: blueberries and blackberries are particularly good in combinations with peaches. Just add 1 cup of either to this recipe in step 6.
Directions
Step 1 - Preheat the oven and prepare the peaches

Preheat oven to 350°F (175 C). Wash, peel and slice the peaches. You can slice them thin or thick as you prefer! Note: you can dunk the peaches in boiling water for 45 seconds, then into ice water, and the skins will usually slide right off.
Step 2 - Melt the butter

Melt the stick of butter in a medium sauté pan over medium-high heat until it bubbles and turns golden-brown. Be careful: it will burn quickly and easily!


Step 3 - Add the butter to a baking dish

Pour the butter into an 8-inch square baking dish.
Step 4 - Mix the dry ingredients and the milk

In a medium bowl, stir together the 1 cup sugar (or Splenda, or blend), the 1 cup flour, 1 tablespoon baking powder, 1/2 teaspoon cinnamon and 3/4 cup milk.


Step 5 - Add the batter to the baking dish

Pour the batter on top of the melted butter. Do not stir.

Note: the photo shows a dark brown batter because, instead of 1 cup sugar, I used 1/2 cup Splenda and 1/2 cup brown sugar; just to cut the calories some.


Step 6 - Add the peaches

Without mixing, arrange the peaches evenly on top of the batter.

Step 7 - Add the brown sugar

Evenly sprinkle the brown sugar over the cobbler.

Step 8 - Bake the cobbler

Bake the cobbler for 40 to 45 minutes at 350 F (175 C), until the top turns golden brown. The batter will migrate from the bottom of the pan to cover the peach slices partially.

Serve warm or at room temperature; preferably with peach ice cream. Yield 6 to 8 servings.

Random Friday Blobs

#1 I'm home today,quite unexpectedly,the plan was for another research study visit. However, the research coordinator is MIA (really, really, not like her..no email or phone confirmation, and phone messages go straight to voice mail) and I am not driving 8 hours round trip without some sort of confirmation. Call me unreasonable,but you can't even get into the building(unless someone lets you in) & I am not making that trip for nothing. I'm kind of worried about her,because she also has diabetes and I just hope she is ok. I also hope someone answers her voicemail & tells me what to do next, because I'm days away from (study supply) depletion, and while I have no problem using my own, I really don't think that is protocol & I don't wish to be kicked out of the study for that. I have the endocrinologist's (home) phone number,& may use it(I think this classifies as worthy to be bugged about)

#2 Hand Surgeon is back from his vacation,& a date is now set in stone.Unfortunately(again,sheesh, is this Friday the 13th?) the two (date) options were November 10 (wedding anniversary) or December 8. I really don't want to have surgery on November 10,but waiting till December really seems un-doable,it hurts too much. The only good thing about it is diabetics always get moved to one of the first surgeries of the day,because we've been fasting and might crash and burn if they don't do it asap. Not true, when one is on a pump,but I am not one to look a gift horse in the mouth,let them believe what they want to believe. It won't be hand surgery,it's at the elbow-an anterior transposition of the ulnar nerve (sub-muscularly,which the surgeon feels is more effective for thin,younger patients). Cast for 10 days.(no blogging/Internet except for what I can do one handed) Goodbye, (online) social life. I am glad I am in this research study, though,because it is a heck of a lot easier to fill/insert an Omnipod one-handed then it is a traditional set.(or reservoir fill) As for the Dexcom..I may just put one in right before and hope it lasts 10 days. It's darned if you do, and darned if you don't sometimes..you can only hope & pray that surgery does more good then harm.
I want it to fix everything but I'm aware that in some people,it causes permanent damage.

#3 On October 6, the diabetes community was saddened by the passing of Christopher Saudek,MD an endocrinologist at Johns Hopkins, and a real insulin pump pioneer. I enjoyed his talks with the local pump group,& he was a really nice, decent,interesting individual.(far and beyond his passion for all things diabetes) His is a legacy rich in helping thousands of people with diabetes (throughout his 35 years in practice) Unfortunately, he didn't get to see a cure but he believed in one passionately. I will never forget him.

(he wrote this book,and autographed it for me)

Sunday, October 10, 2010

Ode to My Diet Coke



















Nectar of the gods, I salute thee.

I take a swig
and am transported

far beyond the world of SWAG boluses and fingersticks

to a simpler moment
to a simpler time
when none of it mattered
and a Coke was a Coke, not a nutritional nightmare

diabetes-free
yet diabetes friendly

It is addicting
It is powerful
It is a force of nature
It hits my blood stream like a glass of Orange Juice on a 55 mg/dl, & I am revived.

oh fountain of carbonated goodness

pure
odorless
flowing
swirling
enchanting


immersing my taste buds in an explosion of delight

you come in Diet Coke, Caffeine Free Diet Coke,Cherry Coke Zero, Diet Cherry Coke, Vanilla Coke Zero, Diet Coke With Lime, Coca-Cola Zero, Diet Coke Plus, Sprite Zero, Fanta Orange Zero, Vault Zero, Diet Barqs, Fresca Citrus, Fresca Peach, Fresca Black Cherry,Minute Maid Light Lemonade, Minute Maid Light Raspberry, Minute Maid Light Orangeade, Minute Maid Light Cherry Lemonade,Diet Nestea Lemon Sweet, Diet Nestea White Tea Berry Honey

the crack for the crack-less
the energy for the sleep deprived
the icing for a non-existent cupcake

this I want, this I need, this I crave
(addicted much? umm, yes)

I will raise my glass, and drink, to you.

Thursday, October 07, 2010

No #Dblog Day: EMG Results




This is not the cheeriest of blog posts, but short and sweet is what I need right now.)
Non-complicated,(or caused) by certain disease processes.(unlike the rest of my life) Soon as the doc gets back from playing golf in Bermuda,we can discuss surgery options.(it's nothing that's going away)








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Wednesday, October 06, 2010

Life as a Pancreas: Part I

I no longer doubt what my next a1c will be.




















Granted, I don't know the precise number, but I'm sure it will be under 7. Yes, sure. (can't say I've ever felt that feeling before) I'm not cured, I have not "gone Atkins", nor am I am in training for an Ironman. (last time I went to the gym? don't ask)I just know that this clinical trial & me were meant to be.















I still have highs, but they're not a daily occurrence. No lows whatsoever in seven days. And that is exactly what the first phase of the Artificial Pancreas is supposed to initiate-elimination of the extremes. Perhaps this is not a huge deal to those who already keep their bgs "tight" but as a card-carrying member of the 250+ club, I could not be more thrilled. (to not go above that, multiple times a day) My TDD has dropped 20%, my insulin/carb ratio's have doubled(1/10 to 1/22) and I do not feel like this is my diabetes anymore. My diabetes loves insanity, not order. In the 70-80 range, I don't feel like stuffing my face(1-2 tabs cure the slight jitters). And the overnight Dexcom reading is not a series in insanity(typical night:either spike,drop,spike drop or monster spike) its either slight drop, or slight rise. Stability is not a River in Egypt..it is possible for me,and possible for anyone. I don't know if it's them,(I go off preprogrammed suggestions most of the time) or just the direct contact of the Omnipod/versus traditional pumping..I suspect it's some of both. (and mandatory 3-day pod changes really, REALLY help)



















That being said, it's not all sugar-free cream puffs..my skin doesn't like the Pod tape,& I have some slight rashes from that. I will start using Tegaderm, should it continue to be an issue. I also cannot correct for a high,(premeal) because the Omnipod does not have a food IOB (and invariably, some insulin is still around from the last meal/snack. If I corrected, I would have to eat more, to keep from bottoming out post-meal) I am not happy that it doesn't have meal IOB,but it's something one could get used to. Because my decisions are not truly my own(I'm supposed to be trusting this thing, most of the time) it gets a little tricky, & I'm not really sure what I should be doing. (Study Endo hasn't called me back yet) I want to do what's best for my diabetes care,and it is a "behavioral study" but I'm new to this pump, and have no real clue what I'm doing. Certain things I love, certain things I hate,and certain things I do not know how I feel about it.(as of yet) Had to switch to Freestyle test strips, and as a die-hard One Touch fan that was really, really difficult.(although,bg comparisons showed them to be within five points of each other,so that helped convince me that they are just as (in)accurate) Right now I'm not doing much of anything, besides using the pump/meter/cgm & getting acclimated to it. Friday, I'll begin "tagging" events in the PDM (as previously mentioned, this is primarily an observational phase of the project, and they want to know what makes PWD tick.) That also entails filling out multiple psychological tests like the Beck Depression Inventory,which is every bit as dry & depressing as you may have guessed it is. But it's necessary, so I continue to plow through it.

Saturday, October 02, 2010

09/29/10

My eye exams are not ever what could be called,simple. Because I am a PWD with a complicated eye history(nearsightedness,cataracts, strabismus surgery,& optic neuritis) with primarily one institution, I prefer to go, there. Yes, I could have 10 years of medical records shipped lock stock & barrel up here,but I don't see the need. It is the place that has always been there,the place that took me through 3 eye surgeries and many worried hours of waiting. It is a place where residents share their personal Oreo stash & are always there for emergencies,to the point of first-name basis(over the course of 8 weeks).It is a place where miracles happen,it is a place of hope.

I have an emotional connection to the place,more then words can say.Starting over again,especially at an academic medical institution just has no appeal at all(especially not Hopkins,they lose everything). I can always find an excuse (family,etc) to make the eye appt down where I always went. This time,I was able to squeeze in an eye appt in the morning & the study trial appt in the afternoon.






That morning, I duly arrived @ 9:55 & took a seat. Dr. McAussie (not real name) called me back & put three sets of numbing drops in,took history,tested near/far vision,etc.And attempts to find a working eye pressure thingie. The stardard (blue light special)one that came with the machine didn't work, so he got one that looked like an EKG machine,which didn't work either.The next one looked like an oral thermometer & he stuck it in both eyes..that worked,to the relief of all involved. Chill time in the waiting room, & then it was off for visual fields & a Hess test.(all straightforward) Add three more sets of dilating drops,& it was back to the waiting room for the next half hour. Back in, bright lights & irritating mirrors producing copious amounts of streaming lacrimintation & auroral blobs. Everything looked good,no retinal changes,double vision is stable,& the right lens is beginning to scum up(the left,is progressed in scumming up). Nothing that needs treatment. (it's there,happens to practically everyone,just monitor it) Went off to get it cleared with his attending,& said I was good to go. Blood sugar was 410, by that point,so just had a sandwich/ water in the cafeteria...& spent the next few hours dealing with a bad hotdog(ingested 16 hours previously). Eye exams are never quick,but this one only lasted 2.5 hours.(fairly quick for them!)

By 4:30, my blood sugar was finally descending into the 200's & my gut was empty,which was good,because it was Omnipod Training at the Diabetes Research Center.(and the last thing I needed was to spend most of it in the restroom)






There was a group of six trainees,plus the study coordinator & Omnipod rep. Both of whom use the Omnipod.One of the trainees is a control subject...she doesn't have D,but she's doing it all along with everyone else,pumping saline.(that's both weird,and cool) Training went ok,loaded up on a ton of supplies & then drove straight home.(to beat the approaching monsoon) I was dead by the time I got home, 4 hours later.

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