Sunday, February 28, 2010

The App Spot

(your bi-monthly FREE app report)

1. NBCOlympics. Your up-to-date blow-by-blow of the 2010 Winter Games.(thankfully,they're almost over)
2.FSS Hockey.A way to be painfully reminded,yet again,that Canada kicks our rears in that sport & we just aren't that terrific in it.(it's actually air hockey,but reminds one of hockey in general)
3. Sunday Lawn. This is a really fun little game where you have to mow lawns while avoiding dogs,dog poop,and hamsters.(that break your mower blade and send you back to the beginning)
4. iSurgeon.You,a scalpel,and a virtual lawsuit waiting to happen!
5. Meebo. You can IM with over 100 platforms using this app..aim,yahoo,fb,windows live,gmail,etc.Ultimate geek must-have.
6.iVideoCamera. (.99) Not free...but well worth it,if you are stuck with a 3G and want the video camera option.Exports to Twitter,YouTube,Facebook,Flickr,etc. An awesome app.
7.Hawaii. Get away for a minute with the sights and sounds of gentle ocean sands/beaches.
8.Cool Curlings,Lite.(learn how it's really played...become a virtual whiz!)
9. MyCoke.(a code counter for your coke caps) There's no charge,(it's not texting) and it's faster then entering them all on your computer.
10. 5-0 Radio. Taps into the largest EMS-Fire-Police-other network,live stream.Keep informed,of what's going on in your area and around the world!
(the Aussie accents are absolutely adorable)

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Tuesday, February 23, 2010

Inside the JDRF Think Tank

Last night,local pump group had the JDRF VP for Government Relations,Larry Solaris,to come & speak about the work JDRF is doing.And the place was packed,despite the frigid,driving rain that clogged up traffic in every road around there.

I had out my iPhone,furiously Tweeting away with mad abandon so I wouldn't forget anything.I was off in my own little world,not really knowing anyone there anyway,when the speaker came up,introduced himself,and asked what I was doing.I responded,& he said the only day he'd ever Tweeted was when JDRF went to the White House.(Obama Admininistration) I guess that was right before the Secret Service confiscated his phone.(still,pretty cool...Tweeting from the White House!) (I cannot believe I actually told him what I was doing,because for the rest of the night he referred to me BY NAME with various Twitter-related stuff.(in the presentation)To say that he has an amazing memory would be an understatement.)Anyway,the VP had brought along his JDRF entourage-staff to help with the presentation.Animas had furnished the requitory diet coke and carrot sticks,& we all settled in to be duly educated.The VP is a type 1 himself...and that added a touch of realness to the JDRF message.So, he touched briefly on the operating budget of JDRF,amount allocated for research(1.5 billlion,funding through 2011),the artificial pancreas project(goal is,to submit to the FDA for approval within 4 years),Smart Insulin-which is being funded partly by JDRF , microneedles(which are so tiny it's like they don't exist...and JDRF is working with BD on them,potentially to be put into pumps..have potential for much quicker insulin absorbtion), advocacy(Promise to Remember Me,Childrens Congress),walks(and we'll be doing our FIRST walk in April,squee!) ,cgm/pump coverage(they met with top ten insurance company ceo's to see what it would take for sensor coverage)and stem cell research.This is where the mood turned from that of excitement to an emotion of an entirely different sort. I happen to think there are other options to the path to a cure,then that of stem cell research.People say..well,if your son/brother/mom were dying & that were the only chance they had you'd feel differently.It doesn't work that way,you can't approve of something you feel to be morally wrong.Even if it means you have to live the rest of your life with this disease.

Anyway,beyond that,it was a very good presentation,& I'm now all fired up to go harass our Congressmen about more funding!

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Friday, February 19, 2010

Secrets of the Genome(part 2)

(this is a 3 part series, the first will go up when I find the notebook I recorded it in..and the 3rd will probably go up sometime next decade,if/when it ever gets resolved)

Conflicting things have happened since I went in for genetics testing(at Johns Hopkins, in the later part of January)...most notably, blizzards. Never actually got around to the testing because Hopkins,wants initial dx'ng records before they do any tests. Hopkins, was closed the Friday the snow began,and for the next 9 days. (we were all long shoveled out by then, I tend to think they were shoveled out before we were..and they didn't get as much snow) Monday this week, I called them back-NADA, no records.Tues, the doctor called me-still no records,and they weren't in the office today, but oh yes tomorrow I'll call you back.(as I didn't expect that to happen, I wasn't dissapointed.) Thursday, I called them-still NADA so they suggested I call the old place and see if they'd even sent it. I called, they said they'd sent it back on the 29th and it wasn't there fault that JH was so sloppy. I asked, politely, if they could re-fax it because it appears that it never got through. They said no. (yes, it was shocking, no one has ever refused to re-send something.) You could hear it in their voice that they were 100% sick of the entire situation & 100% sick of me, wishing I could just dissapeir from the planet, I guess. They said they'd maxed out their "fax request" for the month.(1 a month?gee, great policy). I then asked if I could purchase a copy, and they could mail it,(that way I'd be sure to get it) and they said no to that too. Great. I thanked them and hung up, really teed off that it seems to be impossible to get answers from anyone and besides, legally, hello, can you deny someone their own medical records? Faxes do get lost sometimes.(perhaps they're so far beyond mistakes like that that they can't understand that fact) Called JH back, and of course they were off on a two hour lunch so I left a message, and called back later, because I knew they wouldn't call me back. Meanwhile, blood sugar had skyrocketed to 420 and I had had it with trying to be nice to anyone. Guess what-they'd found the (non-existent) fax! I then decided JH shouldered the primary blame, not the other drs office.(yep, JH had gotten it on the 29th) What a bunch of irresponsible dolts. I really thought I'd have to get a lawyer just to get a copy of my medical records. They also said they needed current treatment/lab values, so they were going to call the hospital where I get infusions.(and then call me back) They never "lose" anything.

Of course, they never called me back.(I think they just tack it on the end of things to sound good) 5 times I've called(over 3 weeks) and five times they promise to "call me back". The only way this process is going to keep moving forward is through my own blood, sweat, and tears. Called again today, and yep, they haven't had a chance to call for the records and I am pissed. PISSED.(and I apologize for the language but there is no other word in the English language that describes how I feel) I understand being too busy and all that but its been 3.5 weeks people, 3.5 WEEKS. You don't care two beans about patients.(If you at least called me back it'd be slightly better) And you don't seem to care if the process drags on for months. (At every step of this process, I'm the one to fax, call, and cajole this process along) The doctors are stellar..but the system is horrendous.

Friday, February 12, 2010

Upside Down

You've probably seen this Youtube video, that describes, to a T, what an impact diabetes can have on one's life.

18 months(and 4 days)ago tonight...the world watched the spectacular opening ceremonies of the Summer Olympic Games in Beijing. Most of the world, that is. 08/07/08 was the day my intestines decided to have an intussesseption, and in the wee hours of 08/08/08 I was admitted to the hospital.

Fortuantly, after some more tests(and the drinking of industrial-strength-blockage-remover), it loosened things up..and surgery wasn't necessary. However, I was in alot of pain, I was a diabetic,my labs were whacky, and they weren't going to just discharge me. Morphine dreams was the only thing I watched that day.

The next day,they set about trying to correct the electrolyte situation.3 days later, it was doing better, so they discharged me. And though I have fears sometimes that it would happen seemed to be an isolated,random event.Bowel went back to normal.

Ever since then, the need for magnesium has remained high. 14 months of IV therapy. It's doing better..I can do 2 weeks now w/need of 4grams.(vs even 1 a week, several months ago)And I still hold out hopes, that I can get this pumping thing worked out.(right now, insurance has gotta approve it)

But it's there. Permanently. And my life, will never be the same. Like's here to stay.

Tuesday, February 09, 2010

Snow Daze

Over the weekend,parts of the North-central-east got hit with El Massivo Snow Storm.Dubbed the "Snowcopalyse" on Twitter,it most definatly left an impact.No where was it greater,then in certain parts of Maryland.Yes,DC,I realize that 25 inches of snow tends to cramp your spending style but there are places that are even worse off so could you do us all a big favor & acknowledge that fact?(DC acts like they're the center of the universe sometimes)Some places got three feet.We were semi-lucky,middle-of-the-packers.(at 30 inches)And we kept our power...which I'm very grateful for.

It's now Tuesday.Roads are still largely undrivable,gov't offices (including the post office) remain closed,and so is school.It's kind of nice,but I worry about the obscene amount of work I'll have to make up..pre-test.I'm back with last semester's prof,& he loves to spring frequent tests.(finish one,turn around & do another) It's not even 4 weeks into the semester & soon we'll be on test #2.

Unfortuently,yet another snowstorm is on it's way.Projected 12-20 inches,which is a crazy amount of snow to be dealing with.(on top of the last round)Digging out our cars was like making a snow fort,natural isolation from the neighbors and the world.With this one...we'll have our own snow castle! At 5'1, said snow totals will just about bury me(not including the drifts)It's definatly a winter for the record books.Got my Diet Coke stash bring on Round #2!!

(Keeping the pump warm...)

Snow drift:


Shoveling out..


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Saturday, February 06, 2010

The Ozprah Effect

I don't generally watch Oprah, unless I'm sitting in some waiting area where it's literally right in front of me, being seared into my brain. I think she's a person that, all in all, wants to do the right thing & cares about people. I respect her and the good that she's done.(and even if I did watch Oprah,it's in the same time slot as The Doctors and that talk show trumps the others)

But Dr. Oz is another story.I had to watch the show, because it was about diabetes & I was curious about it. So I went to YouTube(that evening) and watched it. On the second segment, as Dr. Oz was telling all of America that they were killing themselves and the amount of insulin required had to do with how "bad" one's diabetes is, I lost it. I tweeted my honest opinion of him, and it wasn't a nice tweet.(YOU ARE STUPID) Apparently, though, I am not alone in my opinion & the re-tweets poured in, making me feel slightly better about the outrageous (for me) post. Cue in to him visiting a type 1 women in a hospital, who'd had several amputations and was waiting on another kidney transplant.He held her hand why she cried about how she wished she'd cared for herself better. If I were in such a position, no amount of tv-prestige could induce me to get on national tv and recite my problems.It's sad that she doesn't even seem to grasp what really caused her problems.(fluctuation,cumulative effects of blood sugars) Even more pathetic then that, however, is how Dr. Oz pretended to care...sensationalism at it's finest. Does a man(and I use that term very loosely) who thinks insulin is evil really give two beans a bout a critically ill, psychologically fragile diabetic? Especially if (quote) "type 1's don't produce enough insulin" and therefore, if you're eating evil sugar and taking evil insulin to cover it of course you are going to have complications. Of course he doesn't. A physician of that caliber is not a physician I'd stand to be around, much less unload my woes on national television to. I feel sorry for that women and anyone else who listens(and believes) that self-
righteous piece of over-inflated ego. Because, for some people, it really is only about the power. It's so sad to see that on national tv.

And that power has just made the lives of millions of D's worse, not better. There were so many inaccuracies in there I can't name them all, but now we get to deal with the fallout of the "Ozprah Effect." For too many people, what is said on Oprah, must be the gospel truth.(no questions asked)

Tuesday, February 02, 2010

Notes from a Spinning Planet: Manual Check

Manual check. Oh wait, I never read manuals, preferring instead to spend 45 minutes on hold with a CSR, to find a solution to my problem. I hate trying to find something in a book.

My diabetes educator called today. I guess both she and my (8 months pregnant) endo are getting tired of (un)meshing method from madness and want something easier. When I saw the DE last month, I brought I written log and we downloaded pump/cgm reports there.

The problem with my pump reports is, I don't consistently input carbs, even when I do bolus for them. So later, there's a string of erratic numbers & data that I don't remember what it may have been caused by. Throw in a Dexcom graph and a did-it-the-night-before log and it's a yoyo effect from who knows where.

So she suggested using the "Event" marker on my CGM. Confession: I've never used them, which explained my utter amazement when I found out that you could input units of insulin/carbs/minutes of exercise(and severity), alcohol, illness, menses, etc. WOW! When I updated my Dex last year, I never even heard about all those options. I just figured it was a "x" marks the event kind of deal, and you couldn't get specific. This is awesome, because now I can put it all in my cgm and have the insulin/bg/etc. data all together in one report.

I should read manuals, it would make my life(and other people's) so much easier. Putting it on my resolutions list.

And, in other news, my insurance co has decided not to cover diabetes education anymore and I have a nice (not so little)$250 bill from January's appt. They have always covered them 100%, so I'm not sure what's up, but I sure won't be going again until I can get this resolved. Beginning of the year sticker shock, it happens every year.(even when you think you know what tricks they might pull)