Thursday, June 25, 2009

Casey Jones

Come all you PWD'rs, if you want to hear
A story about, a D with no fear
Casey Jones was the 'betic's name
On a trip to his Endo's, in a hurricane.
At 8:30 one morning, in the pouring gale
He kissed his wife,after checking email
He climbed in his car with his logbook in hand saying
"This is my trip to my (a1c-happy) land."

Casey Jones
Climbed in his Chevy
Casey Jones
Dexcom in his hand
Casey Jones
Stable at 120
Taking a trip to his promised land.

Through the visibility was zip, still he drove
Around the inlet, near the cove
Everyone knew by the engine's groan
That that old piece of junk's was Casey Jones.
Well, Jones called his endo, said I'll be there
Because this a1c will be something to share
Endo said Casey, that may or not be
It'll be something I'd certainly love to see.

Casey Jones
Climbed in his Chevy
Casey Jones
Dexcom in his hand
Casey Jones
Stable at 120
Taking a trip to his promised land.

There in the roadway, in the swirling rain
Casey saw a friend, and it clicked in his brain
Threw open a door, and grabbed his bud
Before his good D-pal became one with the mud.

Well, a hand on the wheel, and the other popping tabs
Casey had it together: in both brains and labs
His friend raved, man you're too good a D
To get a 8.0 on your next a1c.

Casey Jones
Climbed in his Chevy
Casey Jones
Dexcom in his hand
Casey Jones
Stable at 120
Taking a trip to his promised land.

Headaches and backaches, no sunshine's ray
Are all a part of the 'betics day
But the grit and the guts and the good true friends
Will take you through life's horrendous bends.

Casey Jones
Climbed in his Chevy
Casey Jones
Dexxom in his hand
Casey Jones
Stable at 120
Taking a trip to his promised land.

And here's the original Johnny Cash version:

(till about half way through the video + the very end)

Wednesday, June 24, 2009

Deep Throat

As previously mentioned, I've had some problems with re-occuring strep throat. Last months being pretty horrific.

Today, saw local ENT doc on the advice of CVS Minute Clinic, which is rapidly approaching their "We can't treat you anymore,you've got some real issues and need to see a real doc" tolerance limits. I haven't reached that limit yet, but 1 more time would probably be it.

This month's was just a sore throat. Not much else, no fever, no nothing. Just a sore throat, so seemingly non-threatening it could be allergies or anything. But up went the blood sugars,and strep test was subsequently positive.

And the semi-cure for repeated strep, is a tonsillectomy. I have the options of waiting to see if I get strep again, or scheduling surgery for the middle of July or the middle of August. Because the beginning of July and the end of July I'll be on two-week vacations. And in mid- August, school starts up. Or taking penicillin for the rest of my life. I've decided to have it done in the middle of July, I'll have a two week window to heal up before Europe.

Anyone else have their tonsils out?what was it like?

Sunday, June 21, 2009

Weekend: Wrapped

1. Returned study pump...impression, not worth a plugged nickel. Assuming it was the polypeptide medication. Study doc and researcher are now in a quandary over whether or not that part of the study needs to be repeated,(because of strep) if in four weeks my insulin requirements vary greatly from what they have this week I will have to repeat it. That's two more Boost tests, and another gallon of blood leached. The blood leaching might conceivably improve my a1c, if it weren't for the over 500 for two more days factor. Can't see how that is going to improve anything. I hate being over 500,it feels so yucky and icky and horrible. Apparently, I'm not alone in the "over 500" category, one guy actually went up to 650. (their meters read up to 850) I also think I'd like more compensation if I'm going to have to do this again.(there's the cost of gas, and the $4 tunnel toll) I don't want to mess up their study and they have to find someone else but I also hope they'll be understanding of the inconvenience of putting oneself through two more times of utter D-heck for this.

2. New Niece! hopefully it works out for bro and girlfriend, both the mom & infant are doing fine... my parents went down and saw them Sat.afternoon.(baby was born on Friday)

3. Other then that, and the never-ending abysmal rain, I really need to get back to the gym, seeing the depressing average on my meter makes me think it will take some pretty major watching the preprandials,postprandials,and everything else to even do damage control on my next a1c. Team Type 1 will be rolling into MD at the end of the week,and that will be marginally exciting. Hopefully inspire me toward more exercise.

Thursday, June 18, 2009

The Placebo Effect

"Come in!" Ginny, the research coordinator, greeted me with enthusiasm(first requirement of the job, you have to LOVE people) as I cracked open a door, seeing if anyone was in that room.

The place. The place where history will either be made, or broken, was buried so deeply in the most obscure part of the multi-billion dollar sprawling medical complex that it had taken me a good ten minutes of wandering around, asking various people where the Surgical Endocrinology Lab was and THEY even not having a clue. Employees, who've worked on that floor for years.

I entered, peeling off my jacket as the warm air hit various body parts,instantly making it feel like a sauna, despite the coolness of the outside air. Ginny liked her haven on the warmer side of things.

It appeared much like the setup of the other research lab, recliners,racks of tubes, tables, several people running the lab tests and a short-white-coated-incredibly-young-looking medical student helping out. It's truly scary that there are now doctors younger then I..and that most people my age are now residents. Ack-I am old.(when did that happen?) Signed papers, had IV put in, drank 2 cans of chocolate Boost, and watched the CGM drift up from 114.

Research doctor wandered in. Ironically, his last name was the same as the research doc down in Virginia. I swear I can't get away from that last name, its too weird how it worked out. Another 2 people came in, they were pre-pancreatic (perhaps a Whipple?)surgery. They drank the Boost/glucose tolerance thing but of course they weren't getting the hormone. Research doc patiently answered all my questions,and asked a bunch of me(to make sure I passed the "should be in" test). Their drug is actually made in the lab and has had no effects in either rats, or humans.(and they make it in their lab so its not from some animal) There will be 4 visits, 4 weeks apart. (2 this week, 2 4 weeks from now)

Visit #1
-100 carbs of Boost
-IV blood draw every 15 minutes for 3 hours
-Get hitched up to study pump that contains either placebo saline or the pancreotic polypeptide.

Said pump, is a Disetronic T10 Panomat insulin pump probably from the 1980's, it is dirt-old and HUGE. Twice the size of my little Ping. They use this pump, because its the only pump out there that can deliver pre-programmed boluses and not have a basal rate. My job, is to do absolutely nothing at all. Do not press any of the buttons, check out the various screens, or drop it in the toilet. It also isn't waterproof, nor does the set detach, so I have to put it in a little baggie and hang it around my neck while showering.(and swimming for 3 days=OUT). I feel like I'm back in the dark ages.
-get payed for first visit($50)
-Recheck bg, (530) correct blood sugar
-Get Meal Voucher, wander on down to cafeteria where everything looks incredibly unappealing and I spend most of it on diet drinks because I'm that thirsty.

(pump return on Friday)

I really think I got the placebo this go-around, the research doc said I likely wouldn't be able to tell the difference but bgs have stayed their normal wackiness(perhaps from getting strep again,who knows,3rd time in 3 months,I'm a strep magnet) so either I'm not getting Wonder Drug or being sick is just minimizing the positive effects. Who knows. Next time I would get the real thing, if I got the placebo this time. Wonder Drug is supposed to make the highs not so high and the lows non-existent. Also got to meet the researcher who has been doing this for the past 20 years,that was pretty neat,drug company sponsorship might actually happen.

That evening, went to pump club, the guest speaker was an ophthalmologist from JH.(one of the members asked her doc to be the guest speaker) JH docs tend to think they are the cream of the crop and other places are 2nd rate or don't even deserve mention. I happen to think the place I got my eye care was pretty great(and cutting-edge) too, so the attitude of said doctor annoyed me a bit. He took our questions/talked about all things eyes for two hours.
Some points he made:
-new treatments are in the works, but lasars are the sole means of treating retinopathy and the lasers of today are very much more precise then those of 20 years ago.
-smoking ups your risk of macular degeneration by 400%. Besides upping glaucoma and retinopathy.
-Teenagers are walking into his office with severe proliferative retinopathy, and most going blind. Freaky scary.
-the goals isn't a cure, its to give you another 40 years with minimal damage. D is going to inflict damage, no two ways about it, the goal should be to limit that damage. He then looked around the table, demonstrating his point by saying that X,X,X you have eye disease, kidney disease, nerve damage(for the record, he gave me till age 84. I was ecstatic,84 sounds pretty good in my book,my a1cs are not longevity material). Apparently we're all disasters, waiting to happen. It was bothering, because thinking of yourself as half-dead and just waiting for the other half to fall apart as well is not really how one should be approaching life.
-young people who have cataract surgery are much more likely to need a lasar-capsulotomy to clear up hazing but I got lucky.
-sunglasses are really not that benifical in terms of reducing UV damage, they did a study on Bay crabbers (those who wore sunglasses vs those who didn't) and damage was the same.
-eyeballs actually shrink when the retina has detached(I'm not sure if this means they get smaller in the socket?)

(at that point, my own eyes were probably as round as saucers-freaky piece of info)

Bottom line is, there's no Plan B for blindness.(when they've done all they can do) You've got to do everything in your power to keep your body, and your eyes, healthy.

Tuesday, June 16, 2009

On Top of Mount Everest

Today, I'm going to talk about Mt.Everest. Apologies if you were expecting an earth-shattering post about CGMS, pumps and polypeptide hormones.(today) I'll be getting to that.(if you want earth-shaking, may I recommend Southern California)

I'm not a big fan of heights, mountains, or the Disney Ride. But my diabetes loves it.

This is today's reading, reaching its lovely 538 mg/dl peak about 11:30 am. (From 114 initially) Not surprisingly, from the 100 carb Boost-Fest with no bolus allowed(except for basal). Fortuantly, I was allowed to correct 15 min after that, and fortunately, it didn't go over 600. That would have been even more of a pain. I will just point out some mountain climbing, bg similarities.

-Going down is easier then coming up. MUCH easier.

-Hydration is important. Diet Coke and water are your best friends. They will save you from certain disaster.

-Mountain Climbing isn't fun. Unless you're a masochist, and feeling tired,cranky, and incredibly thirsty is really your thing.

-Everything looks different from the top. It's like being in a brain fog, if not a natural one.

-Don't do it alone. Call someone, buddy up. The mountain will kick your Gluteus Maximus faster then you can say "Leaping Lows!" In mountain climbing, as in life with diabetes, you need friends to help you out sometimes.

More to come..

Saturday, June 13, 2009

Last of the Type 1's

I've done the guinea pig thing before. It was an intensive, grueling experience; not for those who love A. their sleep or B. their (real, or illusion) state of being in control. Because in diabetes research, your goals are not their goals and vice versa. You sign your rights over to them, going into it you realize ADA type control will not likely be your lot because they tend to have an un-natural fear of anything under 100, trying to keep you more like 180. For a brief period, you just accept it and move on. (you don't have any choice about it sometimes)

The last study I did, I experienced the joys of the Medtronic CGM for the very first time. I hated it, it was off from the One Touch Ultra and the hospital meters by 50 (mostly 70-100) points at all times. NO amount of calibration could make it come back into line. But it was beyond coolness, to be able to see your blood sugar info without testing. So while I played with it(I sure hope they've improved the accessibility of it, because it was good and confusing) the endo fumed with minuscule doses and five minute blood tests. The CGM, was not very useful during the process, so it was largely ignored. (why they even incorporated it into the protocol beats me)

Fastforward almost 2 years later. The CGM I use(Dexcom) is pretty accurate, most of the time. Another research study is in the works, with the "guinea pig" aspect of it for real, with a non-FDA approved substance. Apparently, it hasn't killed/maimed/had any side effects in rats, or of any of the other 9 type 1's to have tried it.(it is a substance produced by the pancreas) Said CGM, will be instrumental in determining whether the stuff really works. I'm both nervous and excited, I've never done anything of this nature. I realize this is something most type 1's would NOT do,its still experimental but to me,I'm a sucker for research studies. And this one, will be pretty weird. (I'm the last person to have to complete the study,before they analyze the results/reproduce on a larger scale-hence, the "Last of the Type 1's" post title.) Hopefully,I won't be the one fatality.
Further details next week.

(when it all starts, bright and early Tuesday morning)

Wednesday, June 10, 2009


...minutes ago, I found out I'm gonna be an aunt(twice more), family drama explodes once again in the case of my two younger brothers(gf's delivering right about the same time). I don't know if it's proper to feel joy when 1 relationship is over, and 1 could do the same and I'll never get to see the kids much less be a part of their lives.Proceed with extreme caution.

...seconds ago, I realized that the five diet cokes I've drunk today probably contributed to the up-up-up line of my cgm.(too much caffeine)

...pounds ago, I did not use as much insulin as I do currently.

...thunderstorms ago, the world was a much browner, uglier place. Now, its a veritable rainforrest.

...twitters ago, I was talking about a security system rep racing toward his car to avoid the deluge! posts ago,was a poem celebrating my love of the lipid.

...months ago, I cheered on Michael Phelps racing for his golds as my gut simultaneously shut down and my electrolytes went on a joyride.

...years ago today, I got new eyes. A piece about the experience was published in the Reflections section ( May 2001 issue of Diabetes Forecast), the experience convinced me that I'd rather be run over by a Mack truck then to ever be blind again. It is true that you never know how much you appreciate something until you don't have it anymore. Good solid lenses, that should last a lifetime(thus far, no disintegration or clouding over issues)it was both the best thing that ever happened to me(fixed the nearsightedness issue)and the worst thing. I am grateful every day that I can see.

The tenth will always be an epic milestone, in my D-journey.

Friday, June 05, 2009

Five More Products to Rock Out Your D-Life

#1 Spi-Belt.Available from here, or from numerous places on the 'net. I got mine from Healthy Outcomes rewards. They're quite handy, to slip a pump,cgm,glucose or anything else you may need to keep close to your body.

#2 The glucagon training kit. Got some at a diabetes conference last summer. If you're in need of one, email me/or Eli Lilly/ or Twitter me(JDRFQUEEN) and I'll give you one. It's invaluable, it lets a needle-phobic person learn how to give a glucagon shot without any pain/actual needle involved.

#3 The A1c Now Inview. This is cool-and a very tempting product, to NEVER go to the endocrinologist's again.(I will though,I'm not quite that bad) An instant a1c without going to the doc! Or if you don't have medical insurance,can't afford a doc/cde visit, it is better then nothing.
#4 A diabetes health journal. Typically, any CVS/RiteAid type store will have these, or you can order online. These are kind of neat, because they have D-tips,places to record your bgs,and just general thoughts (diabetes related or otherwise).It's not just a plain "journal." A semi-expensive($10-$15) way to vent,but sometimes its worth it.

#5 The Glucose Grab.

This looks like a handy little product to both stash emergency glucose in, AND alert the world that you have diabetes.(in case you pass out,perhaps they'll get the general idea to stuff you with sugar)As of yet, I don't have one, but I want to get one.

Tuesday, June 02, 2009

The Last Full Measure of Devotion

Too much stuff has happened in the past 30+ days to possible recount, so I'll just stick with the past 7 days.

On Wednesday, Cara, her friend Amanda, and I met for lunch/supper a local mall. We had a great time, talking about their recent trip to NYC and the D-tribe meetup there. I've never been to NYC, which is pathetic on so many levels(winter=too cold and summer=too much other stuff to do) but I really wanna go,after reading various people's blogs,etc. We hung out there til it was time for her to catch her plane home. It was cool, talking about Twitter,diabetes,blogs,baseball,theater, it really is true that two type 1's(well,most can,I've met a few that were absolutely not able to be tolerated) can just sit down and have an instant connection. Even without diabetes, there was plenty to talk about. Here's the proof:(yes, Cara, you may steal it + repost on your blog...:-))

The previous weekend, hubby and I went up to Gettysburg. First stop, was the visitor center, where we bought two day passes, ate lunch:

At an actual replica of the Union refreshment saloons in Philadelphia(?) and some other city. They'd serve refreshments,provide the troops with necessities. The replica fire place was really cool:

Then, we perused the gift shop where I gave in to my pin addiction:

and stamped penny addiction. + we bought chocolate, which I bolused for without checking my bg. Went out and listened to a ranger talk, and out to the car. Blood sugar was only 93, with 2.5 units of insulin still on board. Brilliant.(the action of the chocolate and other food long gone) Back to the visitor center, chug a bottle of juice. Go back outside.

(one of the former shell-shocked farmhouses of Gettysburg)

(that's not Robert E.Lee, it's some Union general)
30 minutes later, a mile and a half into nowhere, rechecked bg: 73. Ate remaining glucose(gel, and smartie rolls) and stumble back to the visitor center. Refuel with more juice, go through museum.(partially)

Several hours later, now in the 400's, take corrective bolus, go back to car, drive around looking for food, stop/eat at Friendly's, go to hotel/check in, walk around Gettysburg(shops and such). At night, the streets are abuzz with Ghost tours so all these people are bugging you to go on theirs. Quite frankly, the last think I want to do, the thousands of people that met their gruesome end there makes my blood run cold. We passed on that. Bg remained 150-180 during our several hour walk(not optimal, but better then the extremes). Fell into bed, because on...

Monday it was up and at 'em with a hearty breakfast,mandatory iphone charge-up,and we walked across the street.

(re-enactors, there were tons of "mock" camps set up)

To the wax museum.
Belle Boyd, who shot a Union soldier in her mother's house.

War Council:

I took quite a few pics...just can't include them all here.
And when Lincoln spoke, we sat down and listened.(that is, till my memory card maxed out and I couldn't get the entire thing on video)

Then we went back to the visitor center, where we saw the "Cyclorama" (a huge circular famous painting) complete with flashing lights, battle booms, and screaming infant. It was quite the experience.
(a soldier's 50 lb pack of gear,that you could try and lift. Which was ok for about 1 minute and then you begun to understand why they chucked as much as possible over the course of a 25+ mile day's march)

One soldier's "coldpack" for under his cap:

Big guns:

finished the museum, ate lunch, and on the driving tour, got about half way into that.
Eternal Flame: (dedicated in 1933 by FDR and over 100 veterans came to the dedication, these were people in their NINETY'S which is pretty amazing if you ask me)

Was getting late, so decided to finish another time. Ate at a DQ, overbolused and 30 min. later I was dropping like a rock so had to consume even more carbs(juice,lots of glucose tabs) Was so stuffed I couldn't eat another carb.(next step would have been glucagon)

At Gettysburg, there were over 51,000 casualties and 3,000 deaths. Of Pickett's Charge, about half of the 6,000 troops were killed or wounded. People lay on the ground, dying of thirst, dying of their wounds, dying of being drowned because someone else had fallen on them and they were too weak to shove 'em off(and it rained hard after the battle). It was very tragic. The stench of rotting corpses pervaded the area for months, even after hasty, en masse trench burials. It wasn't a very glorious site. Brothers fought against brothers, fathers against sons.(Lincoln had 3 brothers in law who fought for the Confederacy) Standing in that place where one side of the ancestral family tree(the Pennsylvanian half) tried to annihilate the other(Virginian) half brought that to greater understanding. Fortuantly, that didn't happen, my great-great grandfather survived Pickett's Charge(or I wouldn't be here today).And likewise, the Northern ancestor(s) survived as well.
Also walked through the National Cemetary:

a fitting thing to do on Memorial day.(paying tribute to everyone who died there) 10 years after the war, the Southerners had all their dead dug up and shipped home to be buried in the South so there are only Union graves. Didn't have time for the bus tour, or to finish the audio tour, or the other ranger talks at various points. Too much to do, too little time. What we did do was fun, though.

(pretty sure the tennis shoes gave their last full measure too,a sole is worn through on one of them and its time to get another pair)