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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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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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)

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.

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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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.

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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Omnipods & Eye Exams

Tomorrow I take off down South,where awaits an eye exam & the next step of the Artificial Pancreas Project.And while I am not thrilled about the switch in insulin pumps...it will definently be the learning experience of the year.I may love it or hate it,but it will not last forever...& I shall survive.Yes folks,I shall be trialling the Omnipod..stay tuned!!(I am also exceedingly nervous,given my uncanny ability to accidentally rip things off/lose devices) I shall be using that, together with their Dexcom,to manage(not manage) my diabetes for the next few weeks.(someone hold my hand & tell me I can do this)


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The Not-So-Funny Bone

(Orthopedic waiting room)

Today, I went to the orthopedic doc, my wrist/hand has been bothering me for several months. Wrist brace/anti-inflammatory meds have not done a whole lot of good. At first, I thought I'd broken it,because it all begun with an injury. My PCP said nope, it was likely a nerve problem & referred me over to the orthopedic practice.

Because it was a satellite office, there was only one doc there that day...and the patients stacked up like cord wood. It took an hour to finally get around to me. Didn't really mind, that happens sometimes,fortunately I didn't have any other pressing obligations the rest of the day.

Doc O came in, asked a few clarifying questions,and proceeded to poke around on my arm & delivered his opinion, which was it looks like a nerve entrapment at the elbow, possibly the wrist as well. The fingers/thumb on the left hand are significantly weaker then those on the right.(fortunately,I am right handed) All of which is common, in individuals with diabetes.(yay,yay,yay) He asked about my control,and said it didn't really matter if my control was stellar...accumulated sugar has a way of causing problems, regardless. Next step is EMG/nerve conduction studies,& I should add an elbow brace to the wrist brace.

(this is the area of pain/numbness)

If it is compressed,it will mean surgery.(I don't really know how it could not be compressed,given the symptoms)There are multiple scenarios that could be occurring-and maybe it is diabetes,just screwing up the entire deal. I really would like it be something fixable,as opposed to "just live with it." Yes, I have diabetes,but I also do alot of typing, etc.,and the whole thing did begin with an injury. I would appreciate docs NOT slapping diabetes as the cause, right off the bat.

Wave of the Future

I got that feeling again.

"Take a look at your Dexcom...in five years,it will be an obsolete piece of junk,gathering dust in the closet with the rest of your diabetes antiquities."










Errrr,seriously? This is one of the greatest technological breakthroughs,ever,(cgms in general)& just like that,the 7 (&7+)will be downgraded to nothingness?

The future beckons...& it's name is the Animas Symphony.Not at the FDA yet,& who knows when it will be,but it will be oh-so-cool when it is(& gets approved). Hopefully be around the time my warranty on this pump is up. I love the name,it's surely music to my ears to have an all-in-one device!

Having diabetes sucks,but the improvements are coming,fast and furious,& I have hope that I(& many other PWD ) will live long enough to benefit from them. Medtronic is steamrolling ahead with their artificial pancreas studies, JDRF-Animas is doing their thing...& rumor has it,that yes,Steve Jobs is in cahoots w/Dexcom integration into a phone(the iHelp,which may or may not be true,but would be totally rad if it were true)









and it's all a tad overwhelming,like standing on the edge of Niagara Falls,so much technology & potential to manage/cure diabetes. No one knows much yet about harnessing that awesome power,to the greatest good.

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The Great AmeriCanadian Road Trip:Niagara Falls

Day 2,we enjoyed the Canadian side of Niagara Falls.







(thankfully,the breakfast nook had sf syrup.And Diet Coke,so I was good to go)






Breakfast.



















Standing on the ledge...
the amount of water that goes over every second is astounding.
Going "over the falls" is like flinging oneself off a 20 story building & hitting concrete at 200 mph,the undertow is very powerful & that is what kills people-they can't get back to the surface.


Mist:





We opted out of the boat ride,it looked lame anyway.You don't go anywhere near the waterfall.(s,there are two)But the Journey behind the Falls was pretty cool,you go down an elevator & right up near the (Horseshoe)Falls.The iPhone stayed in my backpack,as one gets exceedingly wet from the blowing mist.


Right time,right place for a rainbow!







(the Rainbow Bridge)






Forays into the Gift Shoppe..



























Went to see the IMAX movie about the history of the Falls. The first person to go over(in a well padded barrel)was a schoolteacher(& her cat). They both survived,but no immortal fame & wealth would result...she would die,penniless,17 or so years later.





There have been quite a few attempts,& a few deaths to boot.Not a good idea,even if you survive,you have to pay the fines/perhaps do jail time because it is illegal to go over the falls.











We can cross that place off the Bucket List now..it was pretty cool.

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