Monday, July 25, 2011

Friends for Life:Green Armbanded Moments

Life is about the moments...the good & the bad.And that's what we're doing right here...we're making moments,we're making memories,to be treasured. (a loose paraphrase,it's been 3 weeks & I don't recall it verbatim) -Tom Karlya,FFL banquet, Orlando 2011

(the color bands of the was diabetes,orange was not diabetic,and yellow was celiac disease)

Going into this conference, I knew that it would be a bit different. The clock will never go back(to one's carefree,stay-up-to-the-wee hours,childless days) & I wanted to tie up all the loose ends that I never felt I have,in prior years. (I've had my fun,it was time to make this one a bit different) The first step to that,was getting on "Staff"

as a childcare assistant. It's also a job that comes with a few great perks,most notably free conference registration,free banquet tickets,and a free hotel room, which means the only thing Staff pays for is the plane ticket there/from.(& I dunno,maybe the speakers even get that payed for) Definably the best babysitting gig I've ever done. (yes,you lose your mind after 2 days but there are still good moments,& lots of time to unwind from the kid stress.) In the interest of disclosure, I will say that no one there knows(or cares) that I blog...these thoughts are my own & I would say them regardless.

The first "real" day of the conference always starts on a Thursday,but Wednesday is the day of focus groups,the day when the diabetes companies pick our our minds.(as to what we want to see in technology)
The first session of the day was an adult "Meet & Greet" hosted by Kerri & Scott..(group photo below)

I was then supposed to go to the childcare planning meeting,but no one was in said room,(and the leader wasn't responding to email/voicemail) so I said to heck with it & just went to another focus group. I didn't know what else to do (even the hotel "event boards" showed it to be in that room, & I wasn't just going to wait around at a room where nothing was happening.When I got out of that,my voicemail inbox was swarming with frantic calls ("Where ARE you?!?!") and the actual room was as far away from the room they told me.(as humanly possible) As they didn't bother to call until 30 minutes after the "meeting time" (nor did they bother to pick up their phone & tell me the correct place) I don't really think I was at fault there. I went there,intro'd myself to the CDE, and got instructions. I made it a point never to be late again (even if it was their fault).(CWD needs better communication to their staff)

After that,I stopped by the free Retinal Screening...which is offered every year by Dr.Ben Szirth(& team-a group from New Jersey).There was a bit of a wait,but I'm ok with that. I go every year (they don't put drops in,but they do check inter-ocular pressures & take photographs) Last year, it showed that my L lens was beginning to cloud up...and this year,my R lens is following suit. They always recommend follow up with an opthamologist, & given that you're supposed to see one in the first trimester of pregnancy anyway(didn't happen,but it is on the schedule) I don't feel that it's anything that's snowballing out of control,but when it does become necessary for lasaring I hope it doesn't affect any aspect of vision)

Grabbed some lunch (from the food court),wolfed it down, & for
the 1:30 session, I dashed over to LeeAnn's diabetes art workshop. Didn't know anybody (else) there,but the two teens I sat across from were certainly entertaining.(if nothing else) This is my "self-portrait ".

I guess all of the other adult T1's were having fun in the Infamous focus group...I was so rattled by whacked-out schedules by that point that I didn't have any clue what was going on. After that, I attended another focus group...(I don't remember what company sponsored it...)

It was lengthy,but not unreasonably so...and for 35 Disney Dollars you find yourself agreeable to even 1.5 hours of invasive,"Circle of Love", type questioning. It was geared toward kids (with D) & their parents,but guess what,there were adult pumpers there(and an adult pumper with their pumper child) so there was certainly a good representation from most parts of the D-Sphere about how pumps & meters should interact. That was the closest I got to an actual "therapeutic" session...for I couldn't go to any on Thurs-Friday. That done, I went back to the room for an hour's nap before the Exhibit Hall opened at 6. The Exhibit Hall,upon the official "Grand Opening", is immeadietly flooded by 2,500+ eager souls intent on grabbing as much diabetes swag as humanly possible(like an invading army). And while this is going on, the hotel staff sets up a buffet dinner right outside.(so the plunderers can refuel & get right back to plundering) But being starving(& low),I headed straight for the DRI's "Popcorn Machine"& the free samples they were giving out, I couldn't wait for the buffet. Had some dinner,went back to the Exhibit Hall,lugged stuff back to the room,& had a mini-meltdown (in the Florida humidity)when my room key ceased to work anymore.(I sure wasn't going to lug it all back to the convention center)My roommate came through however,(after multiple,panicky calls) & after dumping everything off we went back to the convention center for beverages & to get a new room key.(& I stopped off at Blogger Central,where everyone was sitting by the lake & tweeting(DSMA chat) merrily away. It was like geek central,though on occasion,someone actually did say something out loud. It was also REALLY cool though my phone service seemed to be at least five minutes behind everyone else's,as evidenced by snippets of conversation that I'd finally "get" later on.

(the live,streaming Twitter board in the exhibit hall)
Morning came way too fast...&it was up & at 'em for a quick bite to eat before a day spent babysitting.

My "Mickey Breakfast."

I was at the appointed room by 8:30,although there was some confusion as to which room I really needed to be in.(the "under 2's" were staffed by a professional childcare service,which I found to be pretty odd) Eventually,I was stuck with the 3's & 4's and as the room filled up with crying,screaming children, I tried to find a far corner & make it look like I was doing something essential so I would not actually have to tear a little darling away (& comfort that little darling). A couple kids quickly found the bubbles,& most of my morning consisted of making sure they didn't spill soap all over the carpet/room/universe. Which means,that my hands were also covered in bubble soap & I didn't check my blood sugar all morning,& by the time lunch rolled around (we got 1.5 hours for lunch,the parents would pick up their kids) & I'd washed my hands a "LOW" greeted me,flipping me completely out. I went into the 5 yo room(right next door) & panickly announced that I was low & could I have something? The Diabetes Educators in that room(who hadn't gone to lunch yet)assisted me in the consumption of a vast amount of Carbohydrates(and checking again,to make sure I'd come up). I'm aware that adults with diabetes (much less staff) are supposed to be role models for the kids & not get into these circumstances in the first place,but it happens to everyone...those lows that catch you totally off guard.DE's rock.(and what is the point of a diabetes conference,if not "making new friends"'d better believe that they remembered my face for the rest of the conference) Had lunch,got over being shaky,perused the Exhibit hall briefly,went back to the kiddo's for the afternoon. One little boy marched right up, told me he had an insulin pump,& asked if I did too. (the answer to that was yes,but I doubt that he'd know what a Pod was since most of the kids used traditional pumps)It was completely adorable & stole my heart(having diabetes at only 4 must be really hard on the parents-the kid doesn't even grasp what it is yet) but then I discovered that there was not one,but TWO little boys,(TWINS) both with diabetes,both with pumps. Both were very cute,but they were also typical brothers...intent on slugging,hitting,pushing,& completely annihilating the other. It was a relief when "nap time" came around & they sacked out completely. It was even more of a relief when 5 pm rolled around & I could check out for good,it had been a really long day. (reinforcing in my mind that I DO NOT WANT TO HAVE TWINS)
(also that day,Jackson,the CGM'ng dog with diabetes visited..a few of the kids were interested,the rest were not)

Went back to the room, got ready for the banquet, & tried to find some adult bloggers to hang out with. I then bumped into the Roche medical director(who actually remembered me from the previous year...which is odd,because generally,people can't wait to forget me) & in the course of that conversation, lost track of everyone else & spent the next ten minutes looking over the huge banquet hall for some. I finally found some.(Lee Ann,Scott Strange,Karen & Pete, Jess & husband,and I think Jacque?)

Crystal Bowersox performed...(& she's even better in person then she was on American Idol!) it was incredible listening to her,she really can sing.And I will forever think that she should have won it.(she was by far,the better singer,but tween girls(& their mass texts) will forever decide in favor of the young male performer. She answered questions for the kids...about diabetes,& performing on American Idol.

Every year,there is a slideshow of the previous year's conferences....& every year, I get all choked up thinking of the incredible people who come/give of themselves to help kids with diabetes be all they can be. But in the middle of my getting choked up,the infamous diet coke earring picture flashed across the screen & I was more mortified then anything else.(ayeeee!how did that end up there? Never mind, I know how ( Thanks,Scott) it was just somewhat shocking,to say the least. I mean,I'm an adult with D & a solo picture of me has never graced the FFL screen.But I survived the mortification.)

I then rocked out on the CWD dance floor (near Lorraine & family & Michelle & family....)

(Michelle Golliday & I)
The next day, was much like the previous...but by 10 AM I was completely worn out & functioning on autopilot. It wasn't quite as hectic,although I made at least 15 bathroom trips for the kids & 7 of those were for 1 kid who didn't have diabetes.( I was beginning to think that he really did) The main CDE took about half the kids to play in "Sports Central" while the rest stayed in the room. I helped with crafts,games,etc. By 4 pm,everyone was pretty ready for the parents to just come already though. Joe S.came in & all the kids had a free for all jumping on him.(does he still have a back,I wonder?)

By 5, I was beyond worn out & in dire need of a nap(31 kids/12 with diabetes...for two days,inside too small room) which I did, for two solid hours. Didn't want to miss the Adults With Diabetes dinner,so I managed to show up(just an hour late) at 8. The ID checker at the door asked if I was 21,asked again,& had no problem with not seeing an ID. I figured that was because there was an open bar,but didn't bother to check the bracelet he slipped on my wrist. I didn't plan on drinking( no matter how alluring those Blueberry Mojito's looked),later I'd find out that with the armband,you could get 1 free drink.(not quite unlimited alcohol) I guess I should have given it to someone else who could drink,but I didn't know.

Sam Talbot is a former Top Chef contestant.(with type 1 diabetes) And in the same way that Chystal Bowersox can really sing,Sam can really,really cook.(he was giving demos of how to prepare the food on that evening's menu) Problem was,it was a bit too spicy for my pregnant taste buds so the greater portion of that meal was the desserts(mini cheesecake,brownie,fruit tart) and water. Tandom(the event sponsor) had a raffle giveaway(Snuggies,a camera,a couple gift cards to high-end shoe stores in New York) & Sam signed autographs/posed while the adults with type 1(spouses,etc) randomly mingled/shot the breeze. There was one person there(an OB nurse with T1) who went to college where I grew up,works in the state I live in,& could tell you more about the nursing program at my school then I could's a small,small world. (& a most bizarre one,I was afraid she'd have some sort of sixth sense about me & ask if I was pregnant)

After that, I figured I'd head over for dessert/scientific discussions with the faculty.(more for the discussions,not the food) I'd gotten about a hundred feet,when one of the CDE's saw me & waved me over to join the group of all nurses unwinding from their hectic week with the help of lots of red wine.Certainly they needed it,but I was getting tired again(& there was no caffeine or alcohol on board to help with that) & about an hour later,excused myself...only to run into the blogger group on the outside patio. Stayed till midnight there & then went back to crash.

And that was the week,in a nutshell. Sat. my roommate & I moved to another Disney hotel.(so were not around for the last "farewell" breakfast) FFL will always be exhausting,but it will always be worth meet new friends,reconnect with the old, & feel that diabetes does not suck quite so badly. There's also no "type" discrimination at FFL...although the vast majority of folks have type 1,if you've got diabetes,you're wearing that same green armband as the T2 next to you. I think it's nice not to fight...1 week out of the year.In a sense,I feel like I've "grown up" with CWD (not really,but I have known some of those folks on the chat rooms since I was 18 & as green with diabetes as they come). After 5 conferences, I finally got to "give back" although I think that probably should have taken the form of another age range. I enjoy talking with the parents of the kids with diabetes gives me insight as to what life is like for them.

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Colleen said...

I'm ready for a nap just reading everything you did.

Lorraine of "This is Caleb..." said...

Woohoo! I wanted to rock on longer but Caleb was tired (and a wee bit cranky) so I had to kick off my dancing shoes early!

Wendy said...

Are you recovered yet? From the crud.

Cara said...

It sounds like you need a long, long nap! :) But it still sounds like you had lots of fun. I'm glad you got to go. And I want some of those Mickey pankcake waffle things!!! :D

Lili said...

Wow, that sounds busy!

There were purple armbands also.

Scott K. Johnson said...

For the record, seeing that picture of you and your fabulous Diet Coke earrings up on the big screen(s!) totally made my day! :-)