FFL: Par-Tay In Orlando!

(finally finishing this up..before it turns into August!)

Medtronic sensors



















This is my quilt square.(#190. Ain't it purty? One hot,hot day in May 2006(?) I slaved over this thing till it was finished.)

















Dinner with friends...















Under the OmniPod Hut! (exhibit hall)















Thursday Evening's Banquet...spot the blogger(s).















The large One Touch Delica.(new lancing device, free samples for all!I'd hate to use one that large, though..)
















The Animas "Underwater" pump bolus exhibit..who can do it the quickest?





The blood sugars sucked...but I didn't really care. I was having too much fun!



















Yes, pets get diabetes too. Meet Jackson, the CGM'ng dog!
























































(cats get type 2, dogs-horses mainly get type 1..and mice, get both kinds) Learned more about diabetes in animals they I could ever imagine..& why they don't try to tightly control bg in animals(risk of severe hypoglycemia, and lifespan too short to develop complications) Made me want to switch careers and become a vet!

Don't drive hypo!



















The outside pool...a thing of beauty. THIS is what a pool should be.






































































Sponsoring somebody.(Charlie Kimball?)















Packing up the Quilt for Life:



















Friday night, there was a young adult/adult dinner sponsored by Tandem. They were giving away an ipad/itunes gift card/camera, and had various diabetes-themed games that one could pick up extra raffle tickets from. The "Jenga" blocks were emblazoned with diabetes questions(wouldn't you know I had forgotten my glasses and had to get someone else to read mine), age appropriate,and that was actually pretty much fun.Sadly, I didn't win the ipad..but it was fun anyway,they had a coffee bar in addition to the food buffet. I sure hope they are repeat sponsors next year!!!

The final breakfast..saying goodbye. Every day was a blast..every day, was unforgettable.

Of Dansk & Denmark

There's a reason they call it Jutland.



It juts, like a thumb, right off of Germany. I never realized just close contact they actually had until I visited there last summer...& it was like, yeah, we just pop over the border whenever we want to stock up on food stuffs.(Germany having a much lower sales tax then Denmark, which is at 25%. And no, that's no a typo..a fast food meal for three at Burger King cost around $25) What person in their right mind WOULDN'T go over to Germany? Buying anything in Denmark is expensive. They are prohibited from buying cars over in Germany though.

Needless to say, they are on much better terms then they were during World War 2,through 1940-1945 they were under Nazi Germany occupation.Denmark didn't put up much of a fight initially(there was really no point, they would have just been slaughtered)but they did positive things during the course of the war in regards to sabotaging the Nazis and smuggling Danish Jews to the safety of Sweden. Denmark, was definatly Germany's sore thumb.(and one that it may have wished at times that it could cut off,but it lived with it,hoping to assimilate it into the German culture) My MIL,who lived in Copenhagen (for her entire youth), then a small child, recalls seeing German soldiers & swastikas & not having much to eat, due to the food rationing. These days, Danes and Germans get along fine. The ugliness of World War II has melted into the past.

(in case you missed it, this was the video I shot last year in Denmark. Germans, Danes, and (2)Americans were all in attendance,and no one was injured,mamed, or killed,in the making of this movie.It was in a very rural area,and no one else was speaking English which definatly made me feel like a tourist,& when a German mistook me for a German & asked me a question(my name may be Heidi but I do NOT speak German) I had no idea what they wanted. Fortuantly,the only word you really need to know is "yeah"(influx on the latter part,like you're asking a question)which means the same in Danish as it does in English. 99% of the questions have this as their answer. This seemed to satisfy the German couple, though I still have no idea what they asked me.(it could have been "Are you really just a stupid American?") I don't know Danish, let alone German.(save one or two odd words)

Anyway, the point of this post is just to ramble..and to reflect (more) on one of the more interesting parts of Europe. Someday, I really hope to go back!


(me in the North Sea. It was way too cold for swimming)

The Somagyi Effect

No brownie points are given for lows.

I wish there were.I wish the lows,canceled out the rollarcoaster highs & didn't, in the end,contribute to glycemic variability(because you know,rollarcoaster blood sugars put one at a higher risk for complications, more so then relatively flat high blood sugars) & a night (like last night)spent stuffing glucose tablets & hearing/feeling the BuzzCom light up/vibrate under the pillow like a substitute fire alarm. Don't get me wrong,it's vastly preferable to the alternative..the glucagon kit is much better unused.

But lows,quite frankly,are just a pain..and night time lows are the worst of all.As grateful as I am that I can wake up,they are A.scary and B.depriving me of what I should be doing at that hour(sleeping). Understandably,said judgement is impaired(from being low,& tired) I usually eat too much & awake next morning,high.I'd really like to have fasting bgs under 100(per endo recommendations) but even with a CGM,I'm scared to death to try it.1 unit will make me drop over 100 points sometimes.(it's hard to have any sort of correction ratio when every night is a different story.Sometimes there's Dawn Phenomenon,sometimes not.) In a perfect world..it would all be predictable. It's also hard to explain to one's endo the fear of going really low & having a seizure/dying in one's sleep.( "Heidi,your average is 150,you are nowhere near hypo and you need to lighten up.") Yeah,easy for her to say.I just want to wake up..normal bgs are optional.

Although,there are the rare times when my Dexcom shows a low..and I don't wake up.My liver rises to the occasion,& pumps out the sugar equivalent of a brownie plus the glass of milk. It's comforting,yet annoying(as I don't have any input in the matter whatsoever,in contributing to the now-high bg) Comforting,that my liver pulls me out of the mess..annoying,that it does such a bad job of doing it.(overshooting the goal)

Low blood sugars only upside is lowering the a1c,& even that seems like way too high a price to pay for the sheer nastiness of all that lows entail.Much better to have an average of 120 (flat)then an average of 60-180.Unfortunatly,it never works out that way..every type 1 I know struggles with lows.(sometimes severe) And many of those strike at night.

Natural or not(who knows,maybe I actually was sleep eating) the power of a low & the need to whack that number into the atmosphere is something that is more pronounced at night.Daytime lows,I can exhibit some self control..but nights,are just a lost cause.

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FFL: The Power of One(plus One)

As I snuck into Tom Karlya's "Advocacy" session,it was obvious that I was pretty late to the game on this one.There was a slide with a flowchart of the governmental "pecking order",presumably to guide one in the "how do I make a difference?" process,& the conversation was on school nurses,etc.(& non-medical personal giving glucagon shots) I know nothing of IEP's and 504's and all that,I never had need of it but it's something that every parent of a kid with D needs to have in place,it seems.Then,the conversation switched to EMS & why they couldn't just give glucagon shots instead of IV's.That,I do know something about..but I do not understand people's reluctance toward IV glucose,if you need it,you need it.(seizing,etc) However,there was alot of confusion as to how the process actually worked..& who was responsible for those decisions & basically the room went dead silent for awhile. In my area,it was the medical director who wrote EMS/Fire protocols & I always figured it to be state law but I don't know.The medical director is an actual MD(& presumably based in Emergency Medicine?out of the ER where they take the patient?) but don't quote me on that,it's been years since I did that stuff.However,when you are unconscious,checking bg is something that should be on EVERY protocol,nationwide,there's no need to call up your local EMS unit & tell them you have diabetes.It's a "duh" moment that any loss of consciousness could be bg related(after ruling out heart,brain issues). (But it is always a good idea to wear medical identification jewelry,regardless) As a Basic EMT,I could give glucagon shots but never got to give one,the paramedics were generally all over the LOC with an IV line pumping D50.
Otherwise,it was treated with glucose gel,each ambulance carrying a grand total of three(not very useful for repeat diabetic calls),but then again,most EMT's have the idea that 15 grams glucose should bring you(in five seconds flat) from comatose to being able to run a marathon. Not quite how it works.(I blew through 3 & the bag of D-50 one day). However, I did see the need for parents,PWD to know slightly more about the process..you can't just call up local EMS & tell them this is how you want your lows treated.I don't even know if having a heart-to-heart with the medical director would result in protocol change.(likely not)There should be a national database where one can look up the protocol for "diabetes" related events so one can know what to expect. There's things EMS can do,and things they can't, & education is needed at both ends of the spectrum.It really bothers me that there's not more knowledge about this issue..& they complain about past experiences because they assume the EMT knows everything about D? (news flash,they don't.They know how to save a life,not how to restore a normal bg)

Regardless,Tom Karlya is one inspiring speaker & made me want to go out there & kick some diabetes posterior!

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Heidi's Top Ten Cooking Rules

(not in order of importance)

1. The sweet and the salty SHALL NOT MIX. (As separately identifiable in the same dish)Celery does not belong in a Waldorf Salad, if it's going to be a fruit salad,do it heavy fruit style & if it's gonna be a Chex type deal break out those pretzel sticks & ranch dips. Chocolate covered pretzels don't really rock my taste buds either, though I can tolerate one or two. That's one of the weird food intolerances I have.

2. Splenda-cize as much as possible,it will cut down on those empty calories.

3. Diet Coke goes with everything,& the best thing is not having to figure out "Red or White?" because it comes in one color,black.

4. If it's dry,wet it.If it's wet,dry it, & if it's perfect..it didn't come from my kitchen!

5. Burned items seem to have fewer carbohydrates,& extremely burned items are bolus free.

6. Spaghetti, like pump tubing,tends to cling to everything it's not supposed to. I want to eat the Spaghetti, not decorate the strainer with it.

7. Fried insulin really doesn't smell the same as fried eggs.

8. If all else fails, drown it in ketchup.

9. Rubber(processed) cheese is one of the most digesting things on the planet,& who cares if it's fat-free. Who actually likes it?

10. Cooking apps totally rock..if you can manage to avoid drowning your $$$.$$ phone in a buttery grave. Do not place phone near the mixing bowl!
(what else would you add to this list?)

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FFL: One Eye at a Time

The left eye. Pipelined from the aorta, it is an important indicator of A.heart health and B.the beginnings of an d-related eye problems,they will start here.(generally)

One of the great things about FFL, every year they have an ophthalmology team that does eye screenings everyone with diabetes. Grandparent to child, they don't care..they just want the word to get out there & you to show up. You fill out a questionairre, they do a bp/pulse screening, and take pictures of your eyes with a high-res camera.(without eye dilation drops) It doesn't substitute regular eye dilutions, but its something you can take to your ophthalmologist should something pop up. This was my second year going, so I was somewhat anxious to see what, if anything,had changed from last year when they said I had minor deposits on my right eye lens. This is common enough on artificial lenses, but still not something I wanted to madly spread/cloud the vision/require YAG laser to burn a hole though. Fortuantly for me,it hasn't spread, and both retinas look happy & healthy.(knock on wood)If you're there next year..definatly schedule an appt.,eye health is something every PWD needs to take seriously.

FFL: The Future is in Your Hands

What does Friends for Life mean to me, as an adult type 1?

It's never felt like I didn't belong. Yes, my first conference I only knew 5 other people, if one could call it "knowing."(brief acquaintance three months prior) Now, five years and 4 conferences later,it's become a part of my life that I couldn't give up. I've learned so many things.. met hundreds of amazing people,& had the time of my life in the process. It's the highest concentration of type 1 diabetes on the planet,every few people you'll see a green wristbands,reminding you that you aren't alone.
I'm moving into that middle adult area(no longer a young-young adult) FFL has changed,and yet,it's changed for the better.(as the teens all grow up) In the past,they've attempted adult integration (unsuccessfully,but with few adults going that can be expected) But for next year,if you are planning to go(or have any ideas for sessions), I encourage you to go over to Scott Johnson's diabetes blog & share those ideas. I don't know if they'll ever change the name..but if you've ever been,the name is irrelevant. There's something for everyone,at FFL.

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FFL: A Prelude

Tuesday started off on a positive note,moved lock stock and barrel from the less expensive hotel (near Universal) to the gargantuan,sprawling,Marriott World Center. The taxi fee,was not cheap,but at least it was cut in half.(being for two people)

CWD registration was open,so my roommate & I went to register.She knew everyone there,so it wasn't quite a 5 minute deal.I knew a few people there,but it's like you don't want to shove yourself into the convo when they clearly think you are as interesting as a stick in the mud.(which maybe I am,but I don't like being treated like that) So I said hi to a few people,chatted at length w/one of them.
I can say with certainty that the very first thing you should say to someone(after not seeing them for a year) is not "Hi! are you pregnant yet?"

Not cool. If I were,I'd probably still deny it till the actual due date,given that PWD's have a inborn tendency to expect disaster(fueled by the endo's ever-present stories & dire threats). So no,I am not pregnant,but gee,how 'bout this doggone 100+ degree Florida oven? Feels just like home!

Registration over, I clipped on my sturdy CWD pedometer & commenced to pounding away toward the 5,000 step goal.(at which point,you could turn it in and get a tshirt.) Went to Walmart,to stock up on Diet Coke/snacks.Considered going to the Volunteers reception,but my roommate said it was lame so I went to a restaurant w/some friends & her instead.And the food was great. I'd given up on bumping into any Roche bloggers but did meet George (that one-in-a-million-hallway-thing),& that was awesome.Roche bloggers were on a tight schedule,& the hotel was so massive,that it just wasn't practical.And by 11,I was ready to crash(not to awaken for 9 hours & 59 minutes) just plain worn out by hotel moving,walking,bg swings,etc.

8:59 am. I awake in a panic,acutely aware that I'd probably missed half of Kerri/Amy's focus group & that wasn't the plan at all. Make it there,for about half the session & slowly piece together that the room has alot of dbloggers in it..Scott,Bernard,Lili,and Chris. I enjoyed the session..I was reminded of the fact that the Internet has no delete button,once you publish something,it's out there.If you don't want someone to know something,don't publish it..no matter how safe you think you are.There are alot of weirdos out there. And unless you have a very common last name,your name will be "linked" forever to diabetes.Great if you're working in that field..perhaps not great if your future employer Googles you.I prefer not to have my last name out there,but there are links(w/my maiden name),set in stone,forever there.Links I can't erase. If I had a d-related job it might be different,but I'm not sure I want to go into that..I'm more interested in Cystic Fibrosis .(as a career path) Time will tell.I'm also not Advocacy Girl, I enjoy my anonymity. But to those who are "out there", I think they reach alot more folks affected by diabetes & I applaud their decision to do that.If it weren't for them,the DOC would not be nearly as an effective place.

It was really great meeting all of the aforementioned bloggers..you feel like you semi "know" someone right off the bat.I try not to be an obnoxious stalker type person,& not reference any sensitive subjects..you have to respect one's private life.And in the blogging/Twitter world,that can be difficult. (if I had any sort of PR job,I'd likely be fired faster then you can say "Great Gallons of Juice!" namely because I have difficulty keeping my mouth shut & differentiating between things I can talk about/things I can't.It has to be spelled out for me.)

Next up,I went to Tandem's showing of their prototype touch-screen insulin pump. It was quite intriguing..& I'm not supposed to talk about it.(although somehow they missed giving me the "swear not to take this info out of the room" sheet. However,it's no secret that A.it exists and B.it's touch screen.
Not quite the pump for a typical 9 yo though.(would be broken within ten minutes)

Brief lunch break..

Then,I went to the JDRF Artificial Pancreas project focus group. That was quite enlightening, & also depressive as all get out. (because there is really no timeline for all of this)Basically,there are 6 steps toward the creation of a AP,& the first is to minimize the extreme highs/lows.Don't ask me what the others were..although I took notes,somehow I cannot find them.

We voted on various issues,& how big of a nuisance they were in our lives/ parent's of kids with diabetes lives.Nighttime hypoglycemia was a biggie,as was dawn phenomenon/breakfast spikes.Hypos post-exercise didn't seem to be an issue for this group of folks. Basically,you can hope for improvement w/this project but trusting your life to it is a pipedream a million years down the line. I am not expecting this to be a "cure." Cures mean normal bgs,being non-diabetic.And the insulins/sensors we have now can not accomplish that.
I wasn't really aware of any other bloggers until Kelly K.made a comment.It was like being smacked on the head with a 2 x 4,that there were other DD folks still around.(voice--twitter picture--blog---identity) I didn't get to meet Kelly,she had to leave for the airport.I did meet David E.(of Diabetes Daily) though.Twitter=instant knowledge.

The last session of the day was with Disetronic.(where they showed off their newest infusion set) Although I think their presentation of it sucked,I liked the insertion device & the set itself. Everyone else really lit into them,there was nothing but criticism. I mean,yes,it wasn't terrific but it wasn't all bad. I've never been in a session where the atmosphere was so negative,sheesh,cut them a break.I think their set has a pretty good chance.

There was an afternoon snack break,where they served popsicles/Diet Pepsi.( making more then one diabetes blogger very,very happy,as there was plenty to be given away)

At 6 pm,the Exhibit Hall opened.There was utter mayhem in there for the next 3 hours. Dinner was served outside, so one could just grab a quick bite to eat & resume whole sale raiding.

At 9, the exhibit hall closed,& that ended the day for me.
(to be continued)
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The Wizarding World of Harry Potter

Pre and post CWD conferance,I spent some time at Islands of Adventure/Universal Studios. It was extremely hot & crowded,bit everything I wanted to see/do, I accomplished.(thanks in part,to friends with the equivalent of fast passes.)
Butterbeer,while being insanely delicious,proved impossible to bolus for.Despite the fact that it was at least 60+ carbs(an icy,cream soda-ish concoction) I ended up scraping hypoglycemic bottom 3 hours after both times that I had it.I swear it was like it had negative 60,because I really only corrected for the high.(insulin plus walking equals insane dropping power though) It was very,very worth it though.(would be that I could treat lows with that for the next billion years!)
























(Ollianders and the Owl Post had lines of 1-2 hours to get into..and they were just shops.The main HP ride was more like 2-4 hours,& the entire area was so jam packed one could barely breathe)










The Forbidden Journey ride was excellent.(albeit on the wild side of things)I don't like rollarcoasters,so I skipped the other ride.



I did manage to squeeze in le candy shop,where I acquired Every Flavor Beans,Fudge Flies and a Sugar Quill.(somehow appealing to my hyperglycemic state,it was like my body CRAVED DKA) I did not eat them,because I wanted something to bring home to my husband.I thought about stuffing sugar in my mouth.(the urges of D can be totally senseless) It was like one of those diabetes myths about diabetics alternately craving/killing themselves on a sugar overdose.As I'd had my treat,(and bolused)I resisted the urge to eat even more.It is hard though,when there are fat & happy non-diabetics all around you eating precisely what they wanted.At that moment,I just wanted a normal pancreas...a normal pigout.

Unfortunatly,there were no stamped penny machines & no time to go on the ride a second time...so the journey ended there.(hastened along by the impending rain/no cover) It was pretty cool though,& definatly something I'd recommend if you are a HP fan.(& are in/around Orlando)


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Day in the Life,Round 2

Woke up this morning
counted my toes
slipped on my glasses
lanced my finger
relanced my finger
sighed at the result
bolused a correction
trotted downstairs
devoured two waffles,sunny side brown
checked my email
tripped over the cats
drove to the airport
kissed my husband goodbye
got frisked by a TSA agent
felt the whoosh on the downside of the 3.0-3.5 hour bolus
popped two tabs
squished in an airplane seat
ate half a granola bar
arrived in a hot place
downed a big Mac
drank diet coke #2
rescued my luggage
waited on a shuttle
gave bad advice
arrived to a broken ac
went to a theme park
drank diet coke #3
skyrocketed 200+
ate a salad
drank diet coke #4
walked my legs off
corrected again
ate half a pizza
recounted fingers & toes
bolused madly
smelt the fresh goodness of smashed insulin
conked out
dreaming of a diabetes-less world
until A. I wake up high
or B. I wake up low.
more harm then good?
perhaps,but at least I gave it all I had,& therein lies the victory.





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Diabetes versus Six

Sometimes,I think that's why it will always be "juvenile"...(to some degree-we'll always be treated like a little kid)











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A Different Type of Hypo

Today,I learned something.I learned that certain things do not mix well in the chemistry lab that is the human body.I learned that labels on products are not there to take up space,& should be read.And I learned that liberal applications of topical lidocaine based ointments(for a rash) will slowely absorb into one's blood stream & hit,like a brick,on a 85+ degree Sunday morning.At which point you will read the back,and freak out,as you've been applying large amounts daily,for the past 3 days.

And I've learned,that because you feel really horrible & shaky (& bg is holding steady) & decide that it might be a good idea to go to the Emergency Room,they tend to take said matter very seriously,despite there being plenty of other sick people there.Near immeadiete EKG,bloodwork,IV line.The technician came back & escorted me to the waiting room..front of the line pass.There must have been something amiss on that EKG because,short of dying,you will always wait several hours,not ten minutes. Heart monitor applied when I got to a room. I learned that there are no blood measurements for lidocaine but enough of it will A.kill you B.make you have a seizure or C.mess up your electrolytes & screw with your EKG which is apparently what it's done to mine,given that I have no cardiac history.I learned that doctors will still throw in a good diabetes lecture while they're lecturing you on the toxicity of lidocaine. I learned that magnesium,given without saline,still burns the entire groin/stomach & gives a buzz.(and not the one from Toy Story)

5 hours later,I'd improved a whopping .2,to .8. They'd maxed out on the amount they could give (outpatient) so they decided to admit me.The new doc came by and asked if I have any cardiac history,my potassium was low too. Finally, I'm wheeled upstairs.It's late at that point so no new orders have been written for more mag,until I get upstairs.I am not having a heart attack,nor do I feel any chest discomfort but the monitor stuff stays on,because low electrolytes mess up the heart rhythm.All I want,is to feel human again,the infusion process cannot go fast enough. Round #2 with the magnesium infusion.(it's mixed with saline that time) Sleep. Get poked by 6 am vampires. Give up on sleep. Eat a tasteless breakfast, wait on the doctor to come by & deliver blood results. Still only 1.1. Eat lunch,swallow more potassium pills,have another round of magnesium, re-wait on the doctor,have more blood drawn-it's now 1.4 & the potassium is 3.8 so it's good for discharge. Eat supper, have paraphenalia removed/etc. discover that you have a tape allergy & you're now a brilliant red from the monitor patches.Won't be treating it with lidocaine,needless to say.Discharged/home/bed.Sleep 12 hours,wake up to a 306 and two units left in the resevour.Change resevour,set. Schedule nephrologist appt. Dip briefly to 200,go right up again to 300-400 where you remain most of the day.(despite boluses,despite everything) Discover that car ac is broken,on one of the hottest days of the year.(and hubby is at work) Discover that driving to the appt anyway is not a good idea as you have a dizzyness attack & turn the appt into a recovery/cold cloth/fluids session. Make it down to the lab,give up more blood. Drive home. Change infusion set,take a shot,collapse into bed-the week can only get better from here, I want to get these levels back on track so I can enjoy myself in Orlando.Had to miss going to pump group & swimming lessons because of all of the above.I am so worn out,both physically and emotionally it's knocked me through the loop.I don't want it to get worse & do anything else,it's done more then enough damage.
But most of all, I've learned that I was lucky,it could have been worse. Dumb luck is my forte.(that,or my guardian angel works overtime)

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Jackpot at the Endo's

Congratulations are in order.

Or not. Depends on which part of the appointment with my endocrinologist you witnessed.

On the one hand, I have broken the 8.0 barrier. (dropped from 8.4 to 7.9) On the other hand, it would have been better if I'd not had (2) 400's and 1 (500's) in the past week. I was sort of dissapointed, because I have had weeks of utterly stellar bgs otherwise and was hoping to have broken the 7.0 barrier. So no dancing on the exam table for me. Lowering an a1c is hard work.(impossible work)

And a recheck of my thyroid levels have turned out normal. Yay,yay! And it's time to get my eyes rechecked.(ugh,ugh)

And here's where I confess to being a slobby, no-good-at-keeping-complete-record-books PWD. Although I generally put in an effort the week before an appt. Add that to the practice of sometimes bolusing for meals/correcting via syringe, and not putting the carb count in my pump & the result is a very frustrated endo so I got the whole "we can't help you if you don't keep complete records," etc. It then turned to,"it's better but an average of 160 doesn't cut it if you want to have an a1c in the 6's and your average should be in the low 100's." And displeasure at my post-meal blood sugar being 310.

All in all, there were two minutes of feeling great about myself and 18 of mentally wishing I was 2,000 miles away. Exhausting doesn't describe it. It all needed to be said, for the purposes of the future plans,but more and more you just feel like your endo has turned into Dr. Jekyll from Dr.O'Awesome. Do, or do not-there is no try. Icing on the proverbial cake..news that I may need to switch from Apidra to Humalog (at some point in the future). What fun that will NOT be.(Humalog sticks around forever)

But coming home to this..



















courtesy of Diatribe (signed by the great James Hirsch himself) made the day slightly better. I am a winner.(if not at diabetes, at least at various contests)

A Taste of June 15

(the real question is-will it survive drops/dunks in the sink/etc. as well as the le trusty (old) 3G?) The thing looks really, really fragile. Regardless, I'm very excited to get one! (hello,quadruple memory upgrade!!)

Eye(d)

It's been 11 years since that day. Eleven. (forgive my obsession with sort-of-pointless anniversaries.I don't consider this one to be that,though.)

Eleven years since my mom and I got in a car,in the early predawn hours,for the hour ride to the hospital.We were late,because my mom got a ticket for cutting between the sides of the interstate on the emergency access road. I guess blindness wasn't an emergency to the State Highway patrol.

I was epically high that morning(370) but none of that mattered.All that mattered,was that I couldn't see anything.The world was a 20/400 blur.On the way to the OR,I tripped,banged,and felt my way behind the orderly. And then fell,to the mortification of any modesty I had left. Entire body exposition,as my gown fell off. That's pretty much the experience,in a nutshell.(naked & blind,roomful of opposite sex health care professionals.Sole comfort was not knowing how many people were in there)

I went out.And came back,to a competely white world (no,it wasn't heaven). One eye,bandaged. The other,dysfunctional. Stood up,black dots streaked across the landscape of bad eye.Lay back down again,quickly.

And the next day,felt the joy of restored vision & the gratitude of a 2nd chance. I cried,profusely.(probably everyone does) 2.5 weeks of worry melted away like a cloaked nightmare. I will always have to wear reading glasses(they hadn't perfected to whole near-far lens implants yet) but to me it is a small price to pay. I will do whatever it takes to keep my vision. Diabetes was to blame(months of high blood sugars wracked havoc,pre-diagnosis) ,but modern medicine does win occasionally, & when it does,there's a sense of stickin' it to the D. I'd have a considerably different life,if it weren't for those surgeries. To me,they meant everything.

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Veni, Vidi, Visa

(I came, I saw, I bought)


Diabetes is very expensive.Even if you have really good insurance,even if you can afford the latest & best.

Last year, I had the not-so-enviable experience of throwing my Dexcom transmitter into a Danish trashcan,which eventually made it's way to a Danish landfill. I usually put a layer of Opsite first(and then insert the sensor,snap the transmitter in place,good to go for the next two weeks) and when it's finished,I rip it off & put it all near a new sensor for the next insertion.Fine if you're not on vacation,rushed for time,and feel like crud from respiratory crud.In a fevered moment,I must have ripped it off and threw it in a trashcan(not the suitcase)5 days later(and on the other side of the Atlantic)as I'm systematically searching & triple-checking my suitcase, said transmitter was no where to be found. Dexcom,unfortuantly,does not replace them as a one time courtesy..it was $375 for a new one.It's one of those situations where you can't say no,because you NEED the darn thing.Whip out the VISA and watch the money dissapeir.(and never,ever,ever lose another one)The major mistakes of my diabetic existance usually lead to my actually learning to prevent from doing them in the future,but the list of future mistakes is endless. Diabetes is fun that way.
And so,I have baked insulin & test strips,had to buy a temporary meter(because the one you bring on vacation just has to die), drowned a pump in Betadine, and done many other things to add to the existing cost of diabetes. It just seems that there is no room for being human, in any of it.Insurance companies are so strict,& most limit you to the bare necessities.Beyond that,you can spend any amount of money on D-stuff.

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The Top Five 'Betic (& not) June Deals

#1. MEDCO.

MHS10, tenoff,MHS20,10off, gets you $10 (or $20 off) your purchase of $10+. New accounts only. Shipping is only .99, so you can get a boatload of cheap glucose tablets. Or whatsoever else your heart desires. And if Medco allows it, you can use another code for another cheap order. (its very YMMV with these codes)

#2. Nationwide FREE a1c test, courtesy of CVS pharmacy. This is pretty awesome for the uninsured/underinsured folks out there, it raises some level of awareness that something might need changing. And you can do it anytime,at any Minute Clinic CVS pharmacy. As luck would have it, Massachusetts,Maryland, Pennsylvania, and Nevada are the only four non-participating states,and of course, I live in one of those states. Way to go, CVS!

#3 Odwalla.com FREE tree(in your honor) planted.(when you vote for your favorite national park)Because generating a small city's worth of medical waste(yearly) should be offset somehow.

#4 Friendly's FREE ICE CREAM,Sat. June 5 (12 pm-5 pm) Just in time to ruin my a1c.(just kidding,it is what it is,and a serving of ice cream will not change that)

#5 FREE admission to any museum, Sat. Sept. 25,2010.(must preregister) It has nothing to do with diabetes,unless you're visiting a urological museum...but it's a good deal!

The American Finale

Dear Fox,(aka American Idol)


You had us all captive last night, what with an unexpected Brett Michael's appearance and a literal Pants on the Ground rendition. To be honest, it was a bit overkill(hurry up with the results already!) but I guess you wanted to make Simon's last night memorable.

I can now see why Simon really,really wants to get out-American Idol has degenerated into a "tween girl appeal" vote. You can be the best,but unless you're appealing to the younger set,you will not win American Idol.

And Crystal Bowersox was, quite simply, the best. The judges can't say so but the real champion last night walked away without the title. Crystal-you've inspired a nation & helped bring awareness to type 1 diabetes(in addition to being an amazing singer). And my hope for you, is that you get a record deal & outsell Lee DeWyze into obscurity. I hope you have only the best diabetes care from here on out,no one should have to beg for a medicine that keeps them alive. I hope you know that you are the REAL CHAMPION.

As for you, Fox,I hope that someday A.I. will be more then a popularity contest. Perhaps you should consider having two champions..a male, and a female. Until you do, the hearttrobs will continue to take the title & the really good singers will never win.

Signed,

A-sometimes-watcher-of-American-Idol-when-the-mood-and-the-circumstances-align

Fear Factor, x 100

What is it like?



















It's like strapping on a jumpsuit and doing things out of anyone's comfort zone each and every day of our lives. We all have things that take us there..a brutal gym workout, an exhaustive medication regimen,an evening with the Food Nazi's. What scares me might not scare you, and vice versa. For me, it's bolusing for carbs. Each and every day of my life, I jump off that (alligorical) building, trusting that everything will work out..the parachute(aka carbs) will slow the descent, the Dexcom will navigate me to a good postmeal,and that other things won't pop up to complicate the whole landing process. Most times it works, sometimes, I crash and burn. The fact that you've done it a million times without incident doesn't make up for the hundreds of times you haven't. Because the bad thing is knowing that you may not get it right, and it's not like practice makes perfect, diabetes can change on a whim.You just have to trust there is a ground,and the risks are quite low that anything will happen.The goal is to try to minimize those times you crash and burn.(double-checking carb counts,glucose & extra supplies on hand) Diabetes is one heck of alot scarier then even skydiving.

The Waiting Game

Waiting.

Wishing the email would come & put me out of my wondering misery.

I am really glad there are people like Ellen Ullman,tireless advocates for the rights(and needs) of not just kids with diabetes,their families,and adults with diabetes.I've known Ellen since forever(through CWD for 10 years,& met her for the first time in 2005) she is just amazing.(both in person & online) She is an article guru, sent me an article,name & email info for this guy at Yale who is big in the world of Bartter's research,suggesting I inquire about DNA research.I didn't have anything to lose,it's not like the NIH has anything (that I can find)going on in terms of research into the disease.To hope that they might give me a $2000 genetics test (for free) is a hope I didn't want to let myself feel.(yeah,I'm good at getting freebies but not that good) The researcher promptly emailed me back with all these questions,namely to determine if it was just a pointless exercise,if it was Classic Bartter's you don't need a genetics test to confirm that. Then he wanted a boatload of medical records,which (because of vacation & school & doctor's offices being a typical PITA) took 1.2 months to acquire,sort,fax relative info to him.

Now I wait, and try not to be impatient.(but with every "ding" to my email inbox,it just intensifies the feeling)Perhaps they should just scrap the whole mess & name a disease after me so no one will have to scratch their heads any longer.I'm still afraid to hope for the genetics test(although if anyone could afford it to give 'em out,it would be Yale),but the input will (regardless) be invaluable to me,whatever he says.Cross fingers & toes. In the meantime,I wait...be it a week,a month,or a year.


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