A Very Diabetes-y Weekend: Part One.

This past Saturday, I attended the Taking Control Of Your Diabetes (TCOYD) conference in Des Moines, IA.  It was the first time I'd been to a diabetes "event" outside of a JDRF Walk, and it was also my first time meeting some DOC folks in person.  (Speaking of JDRF Walks, that's what I did on Sunday!  I'll save that story for Part Two.)

I've been letting my thoughts about the 26 or so hours I spent in Des Moines tumble around in my head for a few days.  I'm not sure I'll be able to adequately describe the experience, which has made me hesitant to try, but I'll give it a go.  And there will be pictures!

The fluorescent lighting was a nice touch.

I drove over to Des Moines on Friday afternoon. (I'd like to point out that Iowa needs more gas stations, less wind, and more cowbell. Okay, maybe the amount of cowbell was fine.) I checked into my hotel, and upon finding my room, immediately burst into giggles. Though I had booked a regular room, they had put me in a 4-room suite.  With wood paneling. And a bar. It was, in a word, ridiculous.

What wasn't ridiculous was the free coffee available 24 hours a day in the lobby.  YUM.

A group of us TCOYD attendees got together for dinner that night:  Scott and Scott, Kelly, C, and myself.  What wonderful people they are!  It was my first time meeting them all, and also my first time sharing a dinner with other PWDs.  All of us had insulin pumps, and four of the five of us had Dexcom CGMs.  Admittedly, I enjoyed the confused look on the face of our waitress as we discussed directional arrows and waved our receivers around.  It felt nice to be on the "inside" in regards to diabetes, instead of being the odd one out, as we so often are.  This feeling; this instantaneous camaraderie I felt with my fellow PWDs (People With Diabetes) over the course of that weekend, is perhaps what I'll miss most.

Scott, Kelly, Other Scott, Me, and C.

On Saturday, we all walked down to the convention center and got going.  The health fair section of the conference included tables for many organizations, including Animas, Dexcom, Medtronic, the JDRF, the ADA, TuDiabetes.org/DHF (where the Scotts were), Diabetic Living magazine (where Kelly was), and many, many others.  It felt like a little bit of Diabetes Heaven to have that many vendors and resources in one place, all there to answer my questions and listen to my feedback.  And to give me free stuff!

Holding the camera above my head = uneven picture-taking.

I enjoyed chatting it up with the Dexcom folks, and let them know that I appreciated their advertising perspective.  (Most printed materials for blood sugar monitoring equipment will have a number like 100 or 104 on the display, which many [myself included] find frustrating.  We see a lot of numbers that aren't anywhere close to that, and we appreciate a dose of reality.)  The picture of the Dexcom receiver on their poster (and also on their website) displays 160 (!), and the 3-hour graph showed that the BG levels had even gone above the high setting prior to that.  I notice details, and I like to positively reinforce that kind of message when I see it.  I also let one of them know how much CGM usage has changed my health for the better - almost a 2-point drop in A1C since I started in January.  I then watched the guy grin from ear-to-ear and tell me, "That kind of story is why I get up and go to work every morning."  And that kind of story is part of why I love Dexcom so much, sir.

I got to take a peak at the MM Revel system - that CGM sensor is much smaller than the older version I was used to.  The guy from Abbott also tried to sell me on the Navigator system, but I just wasn't convinced.  (Plus, it's off the market right now - just as well.)

Playing Wii Bowling at the Novo Nordisk booth was cool, but I felt disappointed when I couldn't get an answer to why the woman in their huge advertisement back-drop wasn't an actual PWD.  There are so many of us out there - why not use the real thing? 

We all settled into the main assembly room and heard presentations from all sorts of people - Dr. Steven Edelman, of course (endocrinologist, TCOYD founder and director, and one of my favorite people that day for referring to an old endocrinologist of mine as a "son of a b!tch" to a roomful of about 200 people during a break-out session); a clinical psychologist specializing in diabetes; a diabetologist, a JDRF Scientific Program Director, and a local endocrinologist.  Though the conference was mainly geared towards type 2's, there was certainly a place for we T1's as well.  And, you know what?  I came away from those presentations knowing a lot more about type 2 than I previously did.  I'm glad for that.

After some food and a tear-inducing speech from former Miss America Nicole Johnson, we were free to pick from a handful of afternoon sessions. (Though, to be fair, I find Visa credit card commercials to be tear-inducing. But really - her speech was great. And she proudly wears a pink Animas Ping insulin pump!)

Here we are, being schooled on
healthy eating tips.  Go Kelly!

I chose the "Diabetes Police and Diabetes Criminals" session, and then watched Kelly Rawlings give a great presentation on behalf of Diabetic Living magazine, titled "From The Better Homes & Gardens Test Kitchen:  Cut Calories, But Not Taste!".  She even mentioned bacon...  turkey bacon, of course.

Our dinner group that night grew by a few members, and so I got to know a few other PWDs on Saturday as well.  The odds were staggering - seven out of the eight of us had type 1 diabetes, and I think all of those seven had insulin pumps as well.  It was a new sort of fun to be able to play games like "How many carbs do you think this has?", or "Why hasn't the waitress caught on yet that we're ALL drinking diet soda?".  We were the loudest table in the place by a large margin.

I hesitate to mention this, as I don't want to it to overshadow how great the conference was, but I think it's an important point to make.  When I think of a diabetes conference, I think of it as being a "safe" place.  A Diabetes Bubble of sorts.  A place where everyone there knows everything there is to know about D, and respects the challenge of living with it.

I was proven wrong.  Even in that Bubble, stereotyping exists.

At one point early in the morning, one of the presenters invited everyone in the audience to turn to someone sitting nearby and introduce themselves, as a way for everyone to meet and talk to at least one another diabetic that day.  C and I turned around to see a smiling older woman, who scooted over to talk to us.  After a bit of conversation and an acknowledgement of her type 2 diabetes, C mentioned that her and I both had type 1.  The lady's response was, "Oh, I figured you must both have type 1, since you're so young."  (Did I mention I also got mistaken for a college student earlier that morning?  It was a great day.)

Later, at lunch, we were seated with some other TCOYDers.  It's possible one of them was there working at a booth; I couldn't be sure.  What I could be sure of, however, was this overheard conversation:  "So he's looking at that sample plate - you know, the one that shows you proper portion sizes?  And he chuckles and says, 'Lady, that's an appetizer to me!'  And I thought, Yeah, and that's probably why you got diabetes."

It made me mad.  And then, it made me sad.  Then I got mad all over again.  Even here, of all places, someone is going to make a deragatory (and supremely incorrect) comment about diabetes?  People need to know that diabetes isn't our fault.  We already have enough guilt to deal with, thankyouverymuch.

******

What I mainly took away from attending my first diabetes conference was a great big handful of positivity.  I felt energized by the whole experience, and definitely want to attend more in the future.  It felt like Diabetes Camp for Adults.  That feeling I mentioned - the anti-loneliness, if you will - was apparent throughout my stay in Des Moines. 

It was there on the walk back to the hotel Saturday, when I saw (and felt) myself at 93 and dropping quickly on the Dexcom.  We were still several blocks from the hotel, so I began frantically searching my ginormous purse for glucose tabs.  Of course I couldn't find them (wasn't using the two-sided purse!), so we stopped.  And, for the first time in my life, I was all of a sudden surrounded by glucose tabs.  Scott had fruit punch, and C had at least 3 different varieties.  It was a beautiful moment in a way that few people can truly appreciate.

That feeling stayed with me until a gas station in De Soto, IA.  I went inside to grab some coffee, picked out my coffee creamer, and pulled out my pump to dial up the appropriate bolus.  A melancholy smile crossed my face, for I then realized - "normal" was now the real world, and I was once again back to being the lady with the weird-looking MP3 player.

In Pump Failure, And In Health.

Some of the most common advice about wedding planning is that while you can try to plan out every detail, it is nearly inevitable that something will still go wrong.  A and I heard this from many people as we planned our wedding, which took place in June of 2009.  A lot of times, however, you don’t realize how good the advice you’re getting is until it becomes reality.

I’ve mentioned before that our wedding day had a couple of minor catastrophes. I’m not talking about flowers being the wrong color or reception food being cold. I’m not talking about hung-over groomsmen or rainy weather. No, when I have a catastrophe, I go big – I’m talking about our photographer not showing up, and my insulin pump dying.

(Let me preface this story by telling you that I’m not sure how I didn’t freak out in a ridiculous fashion about either of these issues. I think my Bubble of Wedding Day Happy must have prevented me from feeling the full force of either situation.)

Pictures were scheduled to start at 9:00 am, with the guys first, then the girls, then all of us as a group. At 9:05, with our photographer nowhere in sight, A got a little worried and got out his cell phone. “Hey, it’s A, just wondering where you are. Hope everything’s okay. Give me a call back.” After a few moments, the photographer called back.

Incompetent Jerk: “Hi, A. What do you need?”

A: “What do I need?  I need you here! Where are you?”

Total Loser: “Um, I’m at home. Why… what’s going on?”

A: “You’re supposed to be here! Right now! It’s 9:10!”

Guy I Wanted To Strangle: “Oh, sh!t. It’s today? I had it written down as next weekend! Oh sh!t! I’m on my way right now….” (Important Detail:  he lived an hour's drive away from where we got married.)

A: “Don’t even bother. We’re done.” *click*

And thus began the couldn’t-be-more-last-minute search for a new wedding photographer. On a Saturday morning. In June; the peak of Wedding Season. (HA!  AHAHAHAHA!  HAAAAA!  /crazed and delusional laughter)

Sheer luck and chance led us to finding someone. And not just someone – a super great guy who’s a well-established photographer in the area. As fate would have it, we caught him on the one Saturday in June he hadn’t booked himself out, because it was his daughter’s birthday. As fate would also have it, his wife was willing to wake him up so we could talk to him (he was still sleeping when we called), and he was willing to give us his whole morning and as much of the afternoon as we needed.  We’ll never be able to fully express our gratitude to him for that.

I also owe thanks to my brother, who was elected as the person who had to go tell me that the photographer wasn’t showing up. That takes courage.

*****************

My wedding day preceded my involvement (or even awareness of) the DOC. I didn’t know that other ladies had pockets built into their wedding dresses for their insulin pumps – so I did on my wedding day what I did every other day; which was to hide it under my clothing via undergarments. More specifically, my Deltec Cozmo pump was between my Spanx and I, and both of us were all wrapped up in layers of satin and tulle.

In retrospect, I can see the trouble brewing. At the time, I thought nothing of it. It’s a waterproof pump! I've had it for four years with no problems!  It’ll be fine!

And, fine it was, until A and I were in the vehicle that transported us from ceremony to reception. We were sitting in the back seat, being excited and nervous (and hungry), when all of a sudden my pump starts incessantly vibrating.

Spanx + wedding dress + sitting down in a car = a pump that’s REALLY HARD TO GET TO.

Upon retrieving it, I noticed that the screen had a bunch of gibberish on it, and that none of the buttons were responding. It kept vibrating, then beeping… and I couldn’t do anything to stop it. Nor did I know if it was delivering any – or way too much – insulin. I had to disconnect and take out the battery.
 
And that's when the tears came.  Why now, Mr. Pump?  Of all days in my life, why did you die today?  And not only today, but two days before I'm leaving the country on my honeymoon trip? 
 
In addition, Deltec/Smiths Medical (the manufacturer of my insulin pump) had announced a couple of months prior that they'd decided to discontinue the Cozmo and leave the diabetes supply market.  In my mind, I was imagining horrid scenarios where I'd try to call the customer service 800 number, and that pre-recorded robot lady would tell me "This number is no longer in service".
 
I was also imagining horrid scenarios where I wouldn't get to eat my own wedding cake.
 
Thankfully, for the first time in my insulin-pumping life, I had asked my internist at my last appointment for some back-up supplies.  It never occurred to me that a pump failure could happen on the actual wedding day - I was thinking about the overseas trip.  My brother once again stepped up to the plate by quickly driving to my house, getting the specified supplies out of my fridge, and bringing them to the reception for me. 
 
After the reception, I got on the phone with Smiths Medical.  Let me just say, they were wonderful.  I explained the whole story.  About how it was my wedding day, and my pump had up and died with no prior warning.  About how I was flying overseas within 48 hours.  And you know what?  They had a new (well, refurbished, but a working) insulin pump at my door within 12 hours of my phone call.  Awesome.
 
That very same wedding advice can (and always should have been) applied to my diabetes life, as well.  You can plan and plan, but things can still go wrong.  The best robot parts can still malfunction, and they can have spectacularly bad timing.  Having back-ups of everything helps to make those small bumps in the road seem a bit less like mountains.
 
And that cake?  It was delicious.
 

Possibly the most worthwhile use
of a back-up Humalog pen ever.

Childhood With Diabetes.

Last night, I was reminiscing.  While I was cleaning the kitchen, I had one of the Music Choice channels on TV, and the song "Sledgehammer" by Peter Gabriel came on.  (I can't help it; I'm a fan of 80's music.  It makes me happy.  So much so, that, dare I admit?  Dancing happened.  Good thing no one else was home!)  As I glanced at the screen, I saw that the song was released in 1986 - which is the same year I was diagnosed with diabetes.

Wow, Peter Gabriel's face has a lot of carbs.

As ol' Petey sang on about bumper cars and feeding rhythms, I began thinking back to my childhood.  More specifically, I thought about my childhood with diabetes.  Being diagnosed at six years old, I don't have many strong memories of Before.  That's not to say that my childhood memories can only be viewed through my diabetes - I have many fond memories that don't have a smidge of diabetes in them.  But, I thought I'd share some of the diabetes-related things I remember with you guys. 

Everyone have their slap bracelets and t-shirt clips on?  Righteous.  Let's do this.

• I have a memory of being in my newborn brother's room while my Mom was changing his diaper.  I can remember her telling me, through tears, that I might have diabetes, and what that would mean, but that everything would be "okay".  (And, guess what?  She was right.)
• I remember the playroom/meeting room at the hospital I was diagnosed in.  This is where the support groups met and where my parents and I first learned to do injections into dolls and oranges.  I also have a faint memory of the hospital room I stayed in after diagnosis.  And I remember getting flowers! 
• Back when exchange diets were the way to go, candy didn't really fit into that.  It wasn't like things are now - count the carbs, take insulin for it - where your diet can be flexible.  The hospital gave us one of those forest green ADA booklets to take home; the one that explained what exchanges were, and had pictures of what one "exchange" of certain foods looked like.  Because of the food restrictions I had, one of our neighbors at the end of the street I grew up on would always have RoseArt colored pencils or markers for me when I stopped at their house on Halloween.  I thought that was the coolest thing ever.  (Well, that and my She-Ra costume.)
• There was a pleather hospital bed in the room in the back of the nurse's office at my elementary school, where I'd lay down after shotgunning a can of juice.  Those naps were never long enough.
• Fanny packs were an ingenius invention for someone like me.  There was so much d-stuff to carry around (and meters were so much bigger then), and I was too young to be carrying a huge purse.  When these became popular, carrying all that stuff didn't look quite so out of place.
• A trip to the pediatric endocrinologist meant getting to walk past the NICU unit at the hospital (they were down the hall from each other).  Aww.
• The worst part about having a low blood sugar away from home was having to eat those nasty old BD glucose tabs.  Remember those?  They were square, white, chalky, and came in a foil punch-out two pack.  And they came in one flavor - "Yuck".
• All of my testing equipment, syringes, and associated accessories lived in a clear, rectangular plastic Tupperware container on the kitchen counter.  No matter what house we lived in throughout my childhood, that container always had a home there.
• One Easter morning, I awoke to paramedics in my room.  I am told that when my Dad had come to check on me first thing in the morning, as he always did, my eyes were open, but I was unresponsive.  Paramedics were called, glucagon was administered, and I came out of it just as they arrived.  I remember feeling embarrassed that strangers were standing in my room while I was still in bed with pajamas on.  (What a weird thing, of all things, to be worried about at that particular moment.)  This happened to me twice, though paramedics didn't have to be called the first time.  Unfortunately, this series of events lead to my next memory...
• As a child and tween, I had to sleep with one of those urine-detecting bed mats under my bed sheets.  It was probably 2' by 3', and it wasn't all that comfortable because it would make very loud crinkly sounds whenever I'd move around.  It had wires embedded in it that would detect moisture, thus triggering a very loud alarm for my parents if I ever passed out from extreme hypoglycemia again.  This bed accessory became especially embarrassing the first time I had a boy over, because I had forgotten to remove it before he sat down.  THANK GOD HE SAT ON THE OTHER SIDE.  Once I realized the potential horrificness of this situation, I quickly said "Um, maybe we should go watch TV in the living room.  Okay??"  He obliged.  Crisis averted.
• Rotation of your finger sticks and injection sites is important to avoid a build-up of scar tissue, so my parents and I devised a system.  In my log book, we'd assign each scheduled blood test a finger - L1 for my left thumb, R4 for my right ring finger, etc.  Injections were more memorable, so I guess we didn't need a system for those (or I don't remember what that system was).
• I loved, loved the Babysitter's Club series.  One of the four main characters, Stacey McGill, had type 1 diabetes, which made the books that much more relatable for me.  A popular children's book had a character with the same condition as me - it was reassuring.
• I can remember when JDRF was just JDF.
• The meter I had as a kid was the One Touch II.  It was huge by today's standards, the typical beige color all meters came in, and it came in a matching plastic snap-shut case.  (Thanks to Sara for the picture link!)
• Fundraising as a child for the annual JDRF Walk to Cure Diabetes was always something I - well - dreaded.  It was never a very enjoyable task to walk around my neighborhood and ask people for money, but I did it.  Did I use the guilt trip?  You bet I did.  My mom wrote out a script for me, which went something like, "Hi, I'm Kim, I'm ___ years old, and I have juvenile diabetes.  I will be doing the JDF Walk for a Cure on ____, and I was wondering if you would donate some money to my walk."  How could you turn that down?
• At the end of sixth grade, a classmate had a pool party and invited everyone in our grade.  Towards the end, this kid Michael decided it would be really funny to grab my towel and throw it in the pool.  Unfortunately he did this when I was sitting by the side of the pool, trying to recover from a bad low.  (Swimming lowers my BG very quickly.)  Somehow, in my confused and hypoglycemic mind, I thought that the longer the towel was in the pool, the more wet it would get.  Which, you know, totally makes sense, right?  So what did I do?  Dove in after it, and retrieved it from the bottom of the deep end.
• Speaking of grade school, I really missing skating parties.  You can't beat strapping on some old school roller skates, proudly wearing your fanny pack and friendship bracelets, and rolling along to "Ghostbusters". 

Diabetes was a part of my childhood, but that never made it an unhappy one - just a little different than it might have otherwise been.  I still got to do everything I wanted to:  take dance classes, play piano, try (and fail) at soccer and softball, go to slumber parties, and be a "normal kid".  It just took a few extra steps to make it happen.

To those who were also diagnosed as a child, what do you remember about childhood and diabetes?  Please share your stories in the comments section - I'd love to read them.

Twitter, Mental Health, And Ponies.

[Let me preface this post with this:  if you use Twitter (or even if you don't - sign up!), there is a weekly discussion about all things Diabetes that you should know about.  Our fearless leader, Cherise, hosts organized discussions (via Twitter) on living with diabetes, advocacy, health, meters, support and more. If you would like to participate, look around or just hang out log on to Twitter every Wednesday at 9PM, EST. Follow @DiabetesSocMed, #dsma or log on to http://tweetchat.com/room/dsma.]

Tonight's DSMA discussion centered around the connection between diabetes and mental health.  Trying to find a happy balance between diabetes and "life" is a never-ending challenge.  As many of my fellow d-bloggers have discussed, it can feel like this connection to mental health is largely ignored by the medical community.  We are asked by our doctors and CDE's "how we're doing" with our diabetes, but the question is posed in the context of blood sugar control.  We don't often get asked how we're really doing - mentally, emotionally.

Diabetes affects every single part of my life, and and will affect it during every single moment of forever.  Eating always involves math (How many carbs are in this?  How much insulin should I take for it, based on at least ten different factors that play into this?).  Exercise is a risky proposition (Do I have active insulin in my system right now that will make me drop too low?  Did I eat enough carbs to cover the amount of exercise I plan to do?  Is it going to be aerobic or anaerobic?).  Sleeping can be perilous (What if I drop really low while I'm sleeping, and this is the time my body doesn't wake me up?  Do I have an unexpired Glucagon kit handy if A needs to revive me Pulp Fiction-style?).  It's a major financial burden (Have you ever priced out test strips for someone who tests 15+ times a day?).  It can cause immense amounts of frustration (No, I didn't get this because I ate too much sugar/weigh too much/didn't take care of myself.  Yes, I can eat this, actually.  I know you want me to stop sitting in my parked car and back out so you can have my spot, but my blood sugar is too low to drive right now.)  It can also cause immense amounts of guilt (I wish this didn't affect my parents/husband/family/friends/co-workers.  Why, if I'm doing everything "right", am I still a "bad diabetic" for not having an A1C of 6.0?  Will I be able to have kids safely?  Am I selfish for wanting that?)  It can be a little mind-numbing and overwhelming.  We're trying to do the job of an essential organ of the body, for Pete's sake. 

I can say that with time, acceptance and the ability to balance the two has improved for me.  It can, and does, get better in some ways.  I learn what to expect, but every day is a fight, and some days you're just tired of it.  Every day involves intensive attention.  Every.  Single.  Day.  And even with that, sometimes things go wrong anyway, for no apparent reason. 

I find that with more years of diabetes under my belt, I tend to think more about how diabetes has and will affect my life.  The things I've missed out on, or done in spite of.  The things I still want to do, but have no idea if I can do (or if I will live long enough to see).  I know none of us have that guarantee, but not every child gets told "Hey, you know that thing you have?  The thing you didn't ask for, cause, or deserve?  That's going to shorten your life by five to seven years."

I'm a pretty optimistic person, but optimism can only take you so far some days.  The reality of the disease hits you pretty hard sometimes.  The worst doesn't happen to everyone, but you never know which side of the coin you're going to be on. 

So, what can we do about it?  First, we can know that feeling down about diabetes is normal.  Totally, completely normal.  We can know that there doesn't have to be any shame in asking for help, in whatever form that comes.  Have a support system - family, friends, the DOC, whoever.  Talk to your doctors not only about how things are going, but how you're feeling about those things.  Make them aware of the impact this chronic condition has on you, and help them realize that it needs to be addressed.  It would be great to get that kind of help at diagnosis, though many find that the mental angle of the disease isn't acknowledged.  Those people?  They should get a pony.  (Read the transcript from tonight's #dsma for an explanation.  And join us next week!)

The Post In Which I Announce My Intention To Have An Announcement.

I’ve had something on the brain for a while now. Something I’ve wanted to blog about, but haven’t. Life doesn’t always follow the nice neat path you have for it, so part of my hesitation has been not wanting to Jump The Gun. Count My Chickens Before They Hatch. Step On Cracks In The Sidewalk. (Wait, no, that one's okay.)

Parts of me wonder if it’s possible. If we’re ready. (Does anyone really truly ever feel ready? Like, 100%?) If it can go as well as I hope it can. If I can keep my sanity during all that time. And if I talk about it before there’s an It to talk about, am I jinxing something?

I'm scared.  Totally nervous.  Extremely excited about what could be.  Making adjustments in advance.

I’ve been spending a lot of time in the past two months consulting with new doctors. “Assembling my A-Team”, as someone put it. They’ve all been great so far, and everyone agrees the time is right. I even made an appointment with a new endocrinologist this morning, which is kind of a big deal for me, considering I’d sort of sworn them off.

What’s all the hub-bub about? Well, you might be able to guess. I’m not the first to write about this, and I won’t be the last. There is a journey A and I want to pursue.  I may not have an announcement yet – but I do have an intention.  And a hope.

D-Feast Friday: Have I Mentioned My Love of Salads?

I love salads.  I eat a salad probably 4 out of 5 lunches during the week, and I often order them if we go out to dinner (which is almost never, but still).  I found this recipe in one of my Real Simple magazines, and it's got so many of my favorite things, that I felt compelled to share the yummy.  Enjoy!

image credit: Real Simple Magazine

Roast Beef Salad with Goat Cheese and Balsamic Vinaigrette

How long from ingredients to Nom Nom Nom:  15 minutes            Serves 4

2 small heads Boston lettuce (also called 'butter lettuce'), torn into pieces
12 ounces sliced deli roast beef
1 large beefsteak tomato, cut into wedges
1/2 red onion, sliced
4 ounces soft goat cheese, crumbled
1/4 cup extra-virgin olive oil
2 tablespoons balsamic vinegar
2 teaspoons Dijon mustard
Kosher salt and black pepper

-Divide the lettuce, roast beef, tomato, onion, and goat cheese among bowls.

-In a small bowl, whisk (or use a fork, if you're unfancy) together the oil, vinegar, mustard, salt and pepper.  Drizzle over salad.

DONE!

I'm Throwing Out A Line.

I've seen some of my DOC (Diabetes Online Community) buddies mention meet-ups with other T1's in their area lately, and honestly, I'm getting a wee bit jealous.  The only other T1 I know within 50 miles of me, in real life, is the dietician I just saw for the first time a couple of weeks back.

Today was my appointment with my P.A., and I did something a little gutsy.  Actually, I did a few gutsy things.  One was that I told her some of my backstory, and the struggle I've had coming to terms with taking care of myself and the D.  She found it hard to believe, knowing who I am now, that I ever could have been on the opposite extreme of the spectrum, but I certainly was.  We had a great conversation about the often-overlooked side of diabetic care:  the emotional and mental side - which prompted me to tell her gutsy thing #2: "If you have any other adult T1 patients who'd like to get together with another T1, please give them my name and contact info".  I shared that I don't really know any other T1's around here, and how great it's been for me to find the online community.  And then, The Big Gutsy Move:  I gave her my blog address, too!  (Hi, D!)

Having online diabetes connections and resources has been an intregal part of my improved care over the last year, as I've discussed before.  But as great as that support has been, I'd still like the chance to talk to some other T1's face-to-face.  How or when that will happen, I'm not sure.  I'm sending an email tomorrow to my local JDRF chapter contact to see if I can help organize something, if there isn't "something" in place already.  (I'm thinking there probably isn't, or I would already know about it.)

So, on that note - if you live in Nebraska, let me know.  I'd love to get some of "us" together sometime!

And, for those of you who read my last post, here's a bit of follow-up:  my P.A., like myself, is a fan of Whatever Works.  She said if I can simplify my basal pattern, that's great.  If I can't, and I really do need 12 rate changes, that's okay too.  Whew!  I'm planning to tinker with overnight rates first, and then when I have that mostly figured out, I'll start on the daytime stuff.  Baby steps. 

Is It Just Me?

"Wilson - surely, you must also have atypical
basal insulin needs."

I've been doing what I've been doing so long, that I sometimes forget it's not "typical". 

My P.A. and I have been tweaking my basal rates for several months, and finally have things to a point where I'm not consistently running low or high anywhere; i.e. I'm at the basal rate I should be for that time of day and will mostly have in-range, predictable numbers, SWAGing notwithstanding.

It didn't occur to me that my basal insulin needs were out of the ordinary until I saw a CDE last week.  Since I haven't been to an endocrinologist for two years, I haven't had access to a CDE, either.  I've pretty much been winging it, and the numbers seem to suggest that it's been working well for me.  It's a very detailed system, and took months to figure it out, but it works.  And I'm okay with that.

The CDE, however, was not okay with that.  And now I'm wondering if I should still be okay with that, too.

This CDE knows her stuff.  It turns out that she was actually the one who trained me and worked with me on my first insulin pump at Dr. B's office (which she doesn't work at anymore).  She's very knowledgeable, and given our track record, I'm comfortable with her.  She knows what she's doing, and I mostly trust her.  (I say mostly, because when it really comes down to it - I know my body best.  I've been living with this for 24 years, and I know what will work for me specifically, and what won't, in most cases.  I reserve Veto Power.)

Here's the deal:  I have a lot of basal rate changes Monday - Friday.  Twelve different rates, to be exact - which is also the maximum amount that the Ping will let me program for one pattern.  I didn't think this was weird - I mean, they give you up to 12 because some people will use that many, right?  I have scheduled exercise twice a day, and instead of eating a snack, I have a reduced basal rate programmed in there to accommodate that exercise.

Once the CDE and I had gone through my pump settings, and she had everything written down, she sat back.  She looked at the paper she had just written all over, and said, "Wow.  Um... wow.  This is going to be challenging." 

Her thoughts were that I was working with too many variables.  That, if I could get myself down to no more than 6 rates during those weekdays, life would be easier, because adjustments could be made more easily.  The "less is more" approach.

I can see where she's coming from, and part of me can agree with that.  But, I also look at the side that says, "But this is working for me right now!  I don't want to mess it up!"

I will hopefully be seeing my P.A. on Thursday of this week, and I'll see what her thoughts are.  The CDE said she'd call my P.A. and talk through what she told me, so at least I don't have to go in and explain what she's talking about.

So...  I'm wondering, from my fellow pump users - how many pre-programmed basal rates do you use on a typical day?  Does anyone else go into the double digits, or is it just me?

(P.S.  You may be asking why I went to the CDE in the first place - if it isn't broke, don't fix it, right?  Well, maybe I'll have more of an explanation on that another day.  Cliffhanger!)

The Saturday Seven.

...Because I missed the boat for posting the more typical "Friday Five".  Whoopsie!

1. Today marks the return of Husker Football, and I'm pumped.  (Ha!)  Apparently so is Facebook, as my feed has nothing but "Go Big Red!" and "Can't wait for the game tonight!" for the past several hours.  I think I can already hear the Tunnel Walk music in my head.  I work about 3 blocks from the edge of campus, and it's always fun to see the beginnings of the football festivities on Fridays.  We're watching the game at home tonight, and the food will be mostly low-carb snacky food:  veggies and dip, deviled eggs, little smokies, etc.  Yay snacks!
2. My blood glucose levels have been kinda stellar this week, and insulin seems to be going to work faster than I'm used to.  My meter tells me that my 7-day average is 123, and I can be pretty happy with that.  My 90-day average is still 140, though.  I just need to keep plugging away at it.  I attribute this streak mostly to increased exercise.
3. This past Wednesday was Diabetes Art Day, and wow, were there a lot of participants!  You can see a lot of d-art in one place on Lee Ann Thill's website, The Butter Compartment.  She's the one who started the whole thing!  (Thanks, Lee Ann!)
4. I'm starting to really dislike Blogger.  Inserting images and trying to edit formatting can be downright infuriating.  Grr.
5. After almost a quarter-century, my "kidneys don't know I'm diabetic".  That's what a doctor told me this week after I had completed the 24-hour creatnine clearance testing I have to do every once in a while.  YAY!
6. I'm debating whether or not to attend TCOYD in Des Moines at the end of the month.  I've never gone to a Diabetes Conference before, and this one seems to be the closest one to me (even though it would be at least a 3-hour drive).  But...  I don't really know Des Moines, I don't know where to stay, and the JDRF Walk in Lincoln is the next day.  But it could be fun, and I'd get to hopefully meet some other T1's there.  Decisions, decisions.
7. Oh, hey, Hurricane Earl?  James Jones called.  He wants his middle name back.  (P.S. Glad all of my east coast friends appear to be unharmed.)

Hope everyone has a stellar weekend!

Happy Diabetes Art Day!

 

The Piece: Take Me Away, By Kim

The Medium: A blank page from an old sketch book (it's got to be at least 10 years old), and automatic pencil. My old art supplies must still be at my parents' house.

The Message: I rely heavily on my robot parts (my insulin pump, and Jim the Dexcom CGM) to save me on a daily basis. By working together, those two have helped me lower my A1C from the mid-8's to 6.5, which hopefully saves me from that scary dude on the left (that villian, Complications). Jim leads the way, as you'll notice that his finger points in an even-farther-away direction from Complications. He also has a sweet downward-arrow hairdo. All the kids are doing it!

The Idea's Origin: Lee Ann Thill of The Butter Compartment proclaimed that September 1st, 2010 is the first annual Diabetes Art Day. I'm looking forward to browsing around the DOC today to see what everyone came up with! :)