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September 30, 2011

Halloween, Diabetes, and Wabbits.

Halloween (yes, it's a smidge early for this, but bear with me) is awesome, but can be a tricky time for people with diabetes.  Here are a few tips on trick-or-treating, saving candy for lows, and how to make use of that orange jumpsuit even after you've finished your time in the clink.

And thanks to the crew at Animas for their tolerance for my weirdness.  ;) (Also, for those of you on Twitter who have been wondering where on earth my avatar came from, this explains it.)

September 29, 2011

Diabetes Terms of Endearment eBook!

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

September 28, 2011

Not a Princess.

Add 'em to the mix.  Hans Christian Andersen penned the fairy tale "The Princess and the Pea," about the princess who had such sensitive skin that a single pea beneath piles of bedding was enough to keep her up all night.

If fairy tales are true, and I believe they are, judging by my freshly cobbled shoes every morning, I am not a princess.  (Though I used to be, according to this post.)

Because every single night, I sleep like a baby, smashed on top of my insulin pump.

Before I got pregnant, I slept with my pump clipped to my pajamas, and occasionally woke up with the dent of my pump against my hip.  But during the course of my pregnancy, as my belly grew and became hard and gigantic with the brewing Birdy, I stopped clipping my pump to my clothes.  I felt weird when she kicked it, and I kept picturing her face with "Ok" button imprinted on it. 

And after the baby was born, and my body shrank down to this version of its previous shape, I still didn't reclip the pump.  Gone were the days of being princessy and fragile.  According to Chris, I sleep without making a sound, smooshing myself on top of my insulin pump and not caring if it's jammed into my face.   

To be perfectly honest, I usually wake up to find myself trying to actively hatch my insulin pump, cell phone (because its alarm goes off in the morning and my response is to snuggle it), and my Dexcom receiver.  Not to mention the occasional visit from Siah, or the nights when I fall asleep with the laptop under my head.  (Truth.)  Our bed, once a safe-haven for sleep, is now like that machine at the bowling alley with the giant claw, all jumbled with stuff. 

You could pour a whole bag of frozen peas into the bed and I'd simply nest around them.  Sleep is that necessary, and I believe I could take a nap on the kitchen floor or on a bed of nails these days.  Delicate flower?  Nope.

So not a princess.

September 27, 2011

From Abby: Jillian, Tally, Ginger, & Abby - Part One.

Abby is on a mission:  the girl is off to get fit, make use of some diabetes gear we were sent to try out, and tap into her inner diabetes scientist.  Here's Part One of her Mission.  :)  Go, Abby, go!!!

*   *   *

ABBY!  Clad in a snazzy purple sweater, don'tcha knowExercise is one of those words in my life that brings mixed emotions. I love what a solid workout routine does for my blood sugars, my weight, my energy level, and the way my clothes fit. The actual exercise part though, blows. I seriously hate it. I hate being out of breath. I hate sweating. I hate worrying the entire time that it was all for nothing if I go low after and have to eat all the calories back. It sucks.

That being said, sometimes things in life just suck and you have to do them anyway. (See: insulin).

So last year I was working for the YMCA and had a free gym membership. I went quite a bit until I broke my arm (snowboarding, not at the gym) then took so much time off and school caught up to me and I had a stack of excuses bigger than the stack of schoolwork looming over my head. So exercise flew out the window.

Now that I'm here in Boston, with tons and tons of time to spare, I figured I had no excuse. Like, seriously... not a good one at all. One of my very dear friends at CBC has just transformed her life by getting healthy, losing a bunch of weight, and she looks freeking awesome (hey Kerry!) and she did it by eating healthy, and working out. She posted frequently about her struggles with it on Facebook, and about her triumphs. Long story short, she is my inspiration. I know that at one point toward the beginning she used the Jillian Michaels' 30-day-shred DVD and she really loved it. A lot of girls at camp this summer were using it too, and raved about it - so I ordered it on Amazon last week. It came yesterday. 

Another addition to this little story is TallyGear.  While visiting camp this summer, Kerri gave me some TallyGear pouch band things to try out. (I had secretly wanted one for a while). So today I finally gave it a go while doing day one of the shred routines.

Last player in this game of health: Ginger Vieira.  A really long time ago she sent me her book Your Diabetes Science Experiment and I LOVE it. I read it immediately, and it's great. I won't recap it for you (yet!), but basically she puts your body's experience with diabetes and exercise into really understandable language. The book also makes learning how your own body deals with things really easy.

So today, September 20, 2011 [Editor's note:  So I'm late in posting this.  Sorry!!], I vow to do this 30-day-shred while wearing my flowery TallyGear tummy band thing, and write down my blood glucose before and after every workout, and two hours out, every day for 30 days.

You heard it here people. If I'm not going to be employed, I'm going to be healthy. Time for a change.

*   *   *

Go, Abby, go!!!!! I personally think that the cooler seasons are an easier time for me to get in shape, because summer has us doing a lot of travel and playing outside.  Following a steadier workout routine is more viable for me in the fall and winter.  (Even though I should be more motivated in the summer - bathing suit, and all.)  How about you guys - what motivates you, and how do you follow through?

September 26, 2011

We're More Than Our Numbers.

I'm working on recapping the ePatient Connections conference from last week, but what resonated most for me was hearing patients reiterate "We're more than our diseases!"  And it struck me that I'm constantly judging myself on those tougher diabetes moments, and refusing to celebrate the successes.  I need a little more celebration. 

I know my cumulative health is what doctor's pay attention to, but sometimes I just want to sing from the rooftops about that nice, round 100 mg/dL.  Blood sugars that are out of range get all the attention; it's time for me to feel good about the wheels that don't squeak.  ;)

September 25, 2011

Sunday Snapshots: The Age Old Question.

Is it true??

Is coffee truly greater than, or equal to, insulin?  I'm going with "yes."
(Here's a link to the mug on Zazzle.  :) )

September 23, 2011

Guest Post: Arianna Goes to Africa.

People in general have incredible adventures that impress the hell out of me ... and when people with diabetes have incredible adventures, I'm doubly-in awe.  Arianna and I met a few months ago at Clara Barton Camp, where she worked with Abby, and today she's guest posting about her travels to East Africa.  (In the meantime, I'll be digging out from email.  :) )

*   *   *

About nine months ago (crazy to think it’s been that long) I hopped on a plane to East Africa.  There may have been some actual hopping action out of excitement.  I had my first brand new digital camera, my intense hiking backpack (mostly for looks), my beginner’s Swahili manual, and my malaria meds in tow.  Oh, and that entire other suitcase full of diabetes shenanigans to cover the whole precaution factor.  But despite the fact that I was carrying my weight in diabetes supplies, I was determined to make this trip all mine.  And although I can’t say that diabetes didn’t play a role in my trip at all like I had hoped, it wasn’t always putting on its mean face.  

I met friends that somehow convinced me that they too would have left all their insulin in another country and that it’s easy to forget and totally not my fault (magical???). The precious little kids, were absolutely fascinated with my pump…  a long tube with a sticker connected to a cool machine that lights up, I mean seriously, how much cooler can you get?  And as if that weren’t enough, I met someone who would listen to The Pump Girls with me and at least pretend to enjoy it.  What more could I ask for? 

Arianna
Arianna, surrounded by new her friends

So with the exception of forgetting all my insulin in Kenya while switching to the second half of my program in Tanzania, which might be the definition of diafail if there is one, and having to go on Regular insulin for a couple days (throwback!!!), everything went fairly smoothly in the diabetes department and the health department in general.  (Minus the time I got WTS, otherwise named "Weird Tropical Shit."  Now, there isn’t really anything the doctors can do, it lasts a couple days and has some fairly gross symptoms but I was taken to the local clinic anyway.  And let me tell you, for a developing country, it was the best doctor visit I have ever had.)

There was some slight confusion when I told him I was slightly low, 52mg/dL, that morning forgetting that they measure in  mmol/L, but it was a guilt free appointment.  I proceeded to ask him all sorts of questions about how they managed type 1 diabetes.  I shed some tears hearing about how the tiny munchkins have to come in every week to get new insulin due to the heat and have to travel long distances to do so, as well as only check their blood sugar when they come to the doctor.  I knew all of that already, but seeing it first hand was difficult.   But what he told me will stick with me forever.  “Diabetes is a family disease, and with the support of your family and friends management of blood sugar is so much better and easier.”  Brilliance, I tell you, brilliance.  That’s what I’ve been trying to tell my doctor for years when she criticizes me for poor control.

So what I’ve learned from my trip to East Africa (besides what to do when being chased/charged by various animals), how to speak Kiswahili, how freaking adorable the munchkins are, and how much I still love the Pump Girls, is that I owe a big shout out to everyone who is helping to manage my diabetes because with your help things are so much easier!  Oh and how helpful a Dexcom would have been, for real.

*    *   *

[Note from Kerri:  I love Arianna's bio, so I'm leaving it here, untouched. And please, check out her blogs from Africa, because they are amazing. ]

Arianna Jesanis is a senior at the University of San Diego, majoring in marine science solely for the reason that she likes dolphins.  Her diabetes is over 17-years-old, well surpassing the R rated movies admission but still waiting a couple months for the adult life.  As many of her friends know, she is overly obsessed with Clara Barton Camp and loves munchkins (children) of all sorts, particularly the ones that score high on the sass scale.  Arianna loves sleepovers, The Incredibles, and trying to learn how to whistle and likes to impress people with her Kiswahili skills on a regular basis.  You can catch all her Africa stories at
http://loveandlaughrica.blogspot.com.

September 22, 2011

We Made Contact.

The Starbucks on the ground floor of the hotel was a busy one, with conference attendees, hotel guests, and Philadelphians streaming in from the city street, all clamoring for their cup of coffee.

My friends and I stood in line to order, then shuffled over to the "holding area," where we waited for our over-priced coffee to be doled out.  Some people sat in the window seat, some stood and tapped their feet impatiently.  I leaned against the high bar behind me, watching the baristas whirl and spin around each other like socks in the dryer.

That day, I was wearing pants and had my pump clipped to my pocket.  Because I was in a hurry to get back up to the conference, I had run to the bathroom first, and then trotted over to Starbucks.  So my pump tubing, though usually tucked away, was flopping outside of my pocket and dangling towards my knee.

And this lady kept looking at it.  She was sitting on the window seat, so my hip was right in her line of vision.  And she just kept looking.

I caught her eye.  "Hi."  And smiled.

"Hi."  It was like she couldn't help herself - her eyes darted back down to my tubing.  She smiled apologetically.

"It's an insulin pump?"  I said, like it was a question I was asking her.

"A what?"

"An insulin pump.  For diabetes?"  

"Oh!  I didn't mean to stare.  I just thought it was your cell phone, but then I saw that tube hanging out. For diabetes?"

"Yes.  Instead of taking injections of insulin, I use the pump to administer it throughout the day."  We both looked at the tubing.  "I like it."

"My daughters - they're your age - keep telling me to get an iPhone.  'Get an iPhone, Mom!  You have to!'  But I don't want one.  I don't want that much technology.  I just want my phone to make phone calls, you know?"  She gestured towards my pump.  "But if I had diabetes, that's the kind of technology I'd want.  I'd want that."

I smiled.  Her coffee came up on the bar, and mine quickly followed.  

She paused a second.  "Most people in the city don't make eye contact."  

"That's kind of sad.  But look at us!  We've made both eye contact and pump contact!"  

"Eye contact and pump contact.  This has been a unique morning!" She grabbed a few napkins for herself and, out of habit, I think, handed me one for my coffee.  "Have a good day, sweetie, and take care of yourself."

I never caught her name.  She never asked for mine.  But we made contact.  

September 21, 2011

From Abby: Relationship Problems.

I'm still in Philly, but thankfully Abby is on the ball.  Unfortunately, she's dealing with a little bit of diabetes burnout overload, but she's not alone.  (As I just consumed about fifteen glucose tabs this morning, and now I hate everything orange and chalky.)

*   *   *

You know that saying "ignorance is bliss?"

I totally get that, in a big,fat pancreatically-challanged way.

I get it in a "I'm pretty sure the first ten years I had diabetes I was in burnout" sort of way.

I get it in a "I used to be stoked with an A1C of 8.0 and now I freak out if my blood glucose is over 300 mg/dL" way.

I feel as though the more I talk/think/learn/do about the way I handle my own diabetes, the more freaked out and resenting I feel toward it.  And I have no idea what to do with this feeling.  I love learning about diabetes, I love talking to people about it, and helping my friends when they are stuck with a diabetes problem.  I love helping little kids get through a life roadblock and fitting diabetes into it. I love talking to freaked out parents of tiny type 1s and reassuring them that their kids are going to be totally fine.

I don't love, however, explaining why I'd rather not have a beer while hanging out because I've had a wicked blood sugar roller-coaster day. Or why I order food at restaurants that I don't completely mouth-water for sometimes because I opt for the easier to carb count meals.

I resent diabetes in my life, for now.  The past few years I have basically surrounded myself with diabetes things in my life, between becoming involved with the DOC, accepting the job as Charge Nurse at CBC, and working extremely hard to keep my A1C under 7%, I have realized that I freeking hate diabetes.

In like a "now I have to face it and take control and stop avoiding it" way.

My relationship with this stupid disease needs marriage counseling... does this happen to everyone?

*   *   *

We all need a little hope sometimes.

What resonates for me in this post is that whole "loving being part of the DOC but having some friction with how I feel about diabetes" mentality.  I can't imagine life without the online community, and I know my health benefits as a direct result of being part of this community, but sometimes it's hard to keep my head in the game.  (Especially since my pancreas has decided to enter full-on couch potato mode.)
  How do we, as a community, stay involved with one another and still manage that burnout?

September 20, 2011

From Abby: Abby's New Boston Life.

Abby is new in town (Boston) and she's exploring her new city while I'm off in Philadelphia at this conference. Adjusting to life in a whole new place brings change to everything ... even in the ways you prop your windows open on warm days.  ;)  Take it away, Abby!

*   *   *

So I just moved to a city (Boston, you may have heard of it. They have stupid sports teams but the rest of it is okay, I guess). I grew up in upstate NY - like really upstate. I'm talking where the deer outnumber the people.  Then I spent four years right outside of Burlington, VT for college.  The past two years I went back to deer-land for nursing school.  Needless to say it was time for me to live in a city.  You don't know what you love or hate until you've tried it, right? So anyway, I chose Boston because: 1. I have loved this city since I visited for a class trip in 6th grade, 2. a ton of my camp/ SMC friends are here and 3. I have my best friend ,who also has diabetes, to live with (which is a little safety net, both for me and my mother).

Abby's window "pain"
Propping the window open with a box of reservoirs. No worries.

Living here is awesome.  I have a TJMaxx right down the street, and a CVS that I can see from my window. Dunkin Donuts is three stores down from the TJMaxx. Everything about this place is great. Including what all this walking does to my insulin requirements and blood sugars. I’ll be the first to admit I freeking hate going to the gym. I hate exercising. I do, however, love when exercise disguises itself as shopping and exploring.  My first five days here I only used one 180 unit reservoir. On my second day here, I only took 27 units of Humalog. I normally average around 40 units per day. THIS IS CRAZY PEOPLE.

The other day my friends and I went to lunch and ate these colossal cheeseburgers. I did a dual wave, as I usually do with cheeseburgers. Usually it works ok, I end up hovering in the low 200mg/dLs for a while, but since we walked around a ton afterward I peaked around 190mg/dL and came right back down.  Amazing!
Or how about when I’m headed out for a walk and I check in at 176mg/dL so I bolus for a little proteiney snack but don’t correct the 176 and when I get back an hour later I’m 83mg/dL.  If I did that before the gym or formal exercise, I’d end up super high.

Sneaky exercise gets the best of all of us sometimes.  Like when Kerri talks about her gardening extravaganzas, for example.  Or that whole housecleaning thing that acts the same as insulin.  I always keep a tube of ten glucose tabs in the bag with my meter, and usually don't use them often.  Since I've been wandering around here though, I've been refilling it quite a bit.  I tend to treat based on my Dexcom (shh don't tell) when I see something in the 80-90mg/dL range with any sort of downish arrow - a  few tabs and a temp basal and I'm good to go.  I much prefer these casual lows from sneaky exercise to those silly 39mg/dL or 270mg/dL that like to pop up at the gym. (I also much prefer this free exercise as opposed to the ridiculous $60/month fee that is the gym across from my apartment.)

I know that a lot of people have this whole diabetes and exercise and life thing all figured out, but I don’t... yet. And it’s really fun to discover new things in every day life that actually work well with diabetes as opposed to fun things that ruin it. It's also exciting to discover restaurants walking distance from my apartment that are all about BBQ sauce (my biggest weakness next to ketchup), and going outside and getting lost in a book while sitting on your porch reading/people watching.  Not to mention going grocery shopping for myself only and getting things that I'll actually eat and feel good about.

As great as all this diabetes-in-a-new-place thing is, I think my favorite part of life here so far is surviving on my own. I've got some great friends, a supportive mom, and a bit of a savings account to help, but it feels nice to be starting my own twice-graduated-from-college-and-still-full-time-jobless life :)

This.

I have no idea who to credit this image to, but whoever you are, you are awesome.

I'm at the ePatient Connections conference in Philadelphia this week, and Seth Godin just presented the opening keynote about the power of patients, rising against a broken system, and the importance of leading.  This image was behind him for the closing of his speech.

I love this. And I wanted to share it with you guys.

(And I don't care if it's Photoshopped. :) )

September 19, 2011

Guest Post: Raising Colorado ... and Now Diabetes.

Zakary had me at hello. Seriously - she emailed me soon after her daughter was diagnosed and I liked her immediately.  Then I started reading her blog, Raising Colorado, and now I see that she's a total kindred spirit, diabetes notwithstanding.  Her beautiful girl, Zoe, was diagnosed with type 1 diabetes just a few months ago, and Zakary and her family have been adjusting to this new normal. 

But don't worry - they're doing just fine.  And they already received the memo about the cupcakes.  :)  Read on, and thanks so, so much to Zakary for writing today.

*   *   *

My best girl, my daughter Zoe, was officially diagnosed a diabadass eight months ago, five days before her 10th birthday. I was sent into an emotional tailspin those first few days, the most difficult hours were late at night in the hospital. I sat surrounded in the dark, the only light was the glow of machines keeping tabs on my frail, very sick girl that had lost 20 pounds, her poor body struggling without insulin since her pancreas decided to up and quit.

I sat on the uncomfortable vinyl sofa next to my daughter's hospital bed and poured over diabetes information, a stack of educational books, nutritional pamphlets and dosing handouts given to us by the hospital staff. Tears rolled down my face and they wouldn't stop. All the information in the whole world didn't mean anything. I needed to hear that we would make it, that we could do this, that we weren't alone.  I frantically sent my husband a message at two in the morning, as he had gone home with our son.

Bring me my laptop.

He obliged.

And I googled like I have never googled before.  I read diabetes stories and Twitter feeds and found a whole community of amazing badasses that I never knew existed.  Real people with diabetes that were going about their real lives and rocking it.  This is what I needed.

More importantly, the stories, the people...gave me so much hope.

Eight months later, here we are.  I watch my girl go about her diabetes life with such determination and grace that I find it damn near unbelievable that a mere ten year old  is capable of such a feat.  I find myself watching her throughout the day, secretly hoping that her awesome is contagious.  I will never admit this to her, my blog, hell, I rarely allow myself to even think it for but a moment, but diabetes and I have come to an understanding that the buck stops here, man.  Diabetes terrifies the everloving shit out of me on a daily basis and I grab onto the fear and tuck it away, I tuck it away for when I need it the most.  Diabetes is bigger than me, bigger than everything and the great big ball of fear is what keeps me here and in the moment, fighting for my daughter and diabetes cannot win.

Because I have too much to lose.

The fabulous Zoe.  Photo taken by her fabulous mom.
Photo credit: Raising Colorado.  Also, please note the cupcakes. 
Eight months into her diagnosis and she's already a total diabadass. 

September 17, 2011

From Abby: 30 Things.

Abby has her list of 30 Things for Invisible Illness Week.  (And she cracks me up, because she wrote, "I used to do things like this all the time in high school, on a silly online journal I had. They were usually about my favorite flip flops and what i was eating at the moment. This is like a grown up version :)" in the notes with this post.  She's so right - this is like MASH for diabetes.)

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 1998

3. But I had symptoms since: Less than a month before, my mom was a wicked smart nurse

4. The biggest adjustment I’ve had to make is: Resisting Lucky Charms every morning. Okay, so I’m still adjusting at 23.

5. Most people assume: Well, I’m not sure what they assume – I think most people probably just don’t know much about it rather than make assumptions. I’d like to think that anyway.

6. The hardest part about mornings are: Getting out of my cloud-like bed. It’s awesome.

7. My favorite medical TV show is: Oh man it’s hard to pick a favorite. I love Grey’s and Private Practice and House. I also really like all the strange ones on TLC and Discovery. I’m a nerd/nurse.

8. A gadget I couldn’t live without is: My meter. And pump. And lately my Dexcom but I think I could live without that if I had to. 

9. The hardest part about nights are: Staying asleep, but I attribute that none to diabetes. I am a really light sleeper.

10. Each day I take 1 pills & 0 vitamins: Why no comments? That’s mean. I also take a bunch of insulin all day err day. I’d love if I could make it 2 pills and no insulin : )

11. Regarding alternative treatments I: Know that there are none for T1D. Only insulin. Although, I suppose you could consider injections as an alternative to pumping? I’m down with MDI.

12. If I had to choose between an invisible illness or visible I would choose: I love that I can hide diabetes until I’m ready to talk about it. Although I don’t think any illnesses are entirely invisible.

13. Regarding working and career: I’d really like someone to hire me as a nurse, preferably sooner than later. Seriously, though, I’m entering a field that is very accommodating to diabetes, because everyone knows about it.

14. People would be surprised to know: Having an A1C under 7.0 doesn’t mean that I’ve got all the answers.

15. The hardest thing to accept about my new reality has been: This reality isn’t new, it’s almost a teenager!

16. Something I never thought I could do with my illness that I did was: Well we moved to Boston together, which was fun.  It didn’t help much with the moving process though. I think it should be kicked out of the apartment.

17. The commercials about my illness: Sometimes make me laugh (Wilford) but usually frustrate me to no end (all meter companies).

18. Something I really miss doing since I was diagnosed is: It was so long ago I really don’t remember anything else.

19. It was really hard to have to give up: My dreams of becoming a commercial pilot? I don’t think I gave up anything, fortunately. Except maybe my Lucky Charms addiction (See: Question 4).

20. A new hobby I have taken up since my diagnosis is: Knitting. Also totally not diabetes related.

21. If I could have one day of feeling normal again I would: I think I feel pretty normal. If I could have one day without lows and highs I would probably just go outside and play and eat a ton of weird food and not even think about how many carbs are in it.

22. My illness has taught me: How many carbs are in everything. And also to be accepting and interested in people’s differences.  And world peace.

23. Want to know a secret? One thing people say that gets under my skin is: “What can you eat?” I know it shouldn’t, I know they’re just being concerned and helpful… It just gets me sometimes.

24. But I love it when people: Ask questions and then genuinely listen to the answers.  And remember what I tell them. Or ask more questions. This is probably why I want to become a Diabetes Educator.

25. My favorite motto, scripture, quote that gets me through tough times is: I’m not sure I have one, but knowing that there are very young children out there going through the same thing, as well as 50-year Joslin medalists with Type 1 – they both motivate me to care for myself. (Bananarama)

26. When someone is diagnosed I’d like to tell them: I promise, promise, promise that it gets easier and more comfortable. Diabetes is just something that is changing your life, not ruining it.

27. Something that has surprised me about living with an illness is: How much healthier I am than I would be without diabetes. I eat foods that are good to my blood sugar – which are usually better foods.

28. The nicest thing someone did for me when I wasn’t feeling well was: One time I had ketones and was throwing up and my friend brought me a Vitamin Water and a bagel for when I felt better. It was awesome.

29. I’m involved with Invisible Illness Week because: Kerri did it, so I did too. She finds the coolest stuff!  [Editor's note:  You are the best, Abby.  Here, I got you this small, gray cat as a present!]

30. The fact that you read this list makes me feel: Important. Not me individually, but people with diabetes in general.

September 16, 2011

30 Things About My Invisible Illness: 2011.

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)


September 15, 2011

Seventeen.

Dear Birdy,

Oh my goodness, are you really seventeen months old?  So big!  And with this new milestone comes your INTENSE PERSONALITY.  Since your arrival seventeen months ago, you've been the most chilled out, happy baby.  You have always been quick to smile, laugh, and hug.  We've heard from a lot of people that you're a super easy baby to take care of, and we've always been thankful for that fact.

Nice outfit, goofball.

So I'm sure everyone is snickering behind their hands now that you're in Tantrum Mode.  

Oh, tantrums.  You had your first public fit two weeks ago, and it was extreme.  (Or at least for you.  And me.  I remember sweating instantly, in a complete panic.)  We were at the mall, in line paying for something, and you decided that the stroller was not working out for you anymore.  So instead of raising your arms to be picked up, or saying "Maaa!  Maaaa!" and waiting for me to rescue you, you opted to arch your back, flail your arms and legs, and make a sound not unlike a weasel in a woodchipper.  "Naaaaaawwwww!  Maaa maaaa!!  Grrrrr!"  Like the still-new-mama that I am, I made the mistake of letting you loose.  In the store.  Before I'd finished at the register. 

What came next was a very awkward, very loud combination of me trying to hold you in my arms while paying for our purchase, while you hollered and tried to eat my face.  But then you became distracted by the very handsome boy behind the register.  "Oh, she's happy to see me!" he said, smiling and adjusting the sweater tied around his neck.  "Yes, she loves boys.  It's so awkward, but she's a flirt."  He leaned in as he put the purchase into a bag.  "I know what she means.  I love boys, too!"

And you tried to give him a high-five.  Birdy: 1, Mama: 0.

Tantrums are still rare, but you bust them out at home now, too.  I've never been a mom before, so I'm not sure how to handle you when you're throwing a fit, but I tend to completely ignore you.  (After giving you a big warning first.  "If you continue to throw a fit, I'm going to stand right here and ignore you until you're done?  Ready?  Ignoring you ... now.")  You push on for a few more seconds, but then you stop, stare at me as I pretend not to watch you, and then you stand up and tug on my sleeve.  "Mamamamamama?"  

Mama: 1, Birdy: 0.

Words are spilling out of you at a rapid rate these days.  Topping the list just this week are:  dirt, auntie, bathroom, thanks, and rock-rock (for your rocking chair).  You repeat everything I say, which means that my curse word use has deceased significantly and I'm in full-on Yosemite Sam mode.  (Fricka fracka.)  And you babble on and on, talking animatedly to anything that will sit still long enough for you to pummel it with your words. 

You are an amazing little lunatic.  I love watching you become a little girl, complete with sweet smiles, goofy laughs, and a stubborn streak that I can't figure out the origin of.  (Whoops.)  I love you, love you, love you, and if you continue to go over to the pots and pans cupboard and return proudly with the colander on your head, I will personally find a way to restart the space program, you crazy astronaut, you.

Ground Control to Major Bird.

Love always and to the moon (and back),
Mommy

September 14, 2011

Being Temporarily Visually Impaired.

Normally, my vision is better than 20/20.  (20/15 is mine, which always prompts my eye doctor to say "Oh, you should be a pilot!" and then I laugh my face off because, really, do you know me, lady?)  I'm lucky to not wear glasses or contacts at this point in my life, especially considering that everyone else in my family needs a little visual help at this point. 

I'm grateful that my vision is excellent most of the time, despite a few diabetic retinopathy issues.  But for the last 48 hours, it's been a little dodgy, and managing diabetes while my eyesight is impaired has been challenging.  Yesterday was the worst day for this latest relapse of the ol' corneal abrasion, so my vision was very limited in the affected eye (and the other eye was swollen in a lovely, compassionate response to its friend's injury, so basically I look like I'd been tagged in the face with a baseball - twice.).

My Dexcom graph was next-to-impossible to read. I've been taking Tylenol to reduce the swelling in my eye, so the Dexcom integrity has been completely and utterly compromised, but I gave up on trying to recalibrate it last night (after the Tylenol wore off) because I couldn't navigate the input screen. 

Thankfully, the numbers on my Ping meter are gigantic, so I can see my blood sugar results. (For the most part - earlier in the day, I was thankful to recognize whether or not the results included two or three numbers.  Now I can see the actual numbers reasonably well.)  Also, using the audio bolus option on the pump saved me, because those numbers were impossible to see, so I had to bolus by counting the beeps.  That was a fun inconvenience, but doubled as a carb-limiting factor because I deliberately chose snacks with the fewest carbs so I had less of a chance of screwing up the dosing.

Being unable to see properly has retooled my ability to care for myself.  Every time my eye acts up, I'm given a glimpse (pun sort of intended) into what life with limited vision might be like.  Reading meters is easy when I'm able to see properly, but not being able to see that result sets me up for a lot of problems.  How do I dose for a reading I can't see?  How do I dial up an insulin dose when I can't read the pump screen?  (Also, how come my eye has this problem ONLY when I'm traveling or What are you?when Chris is traveling?  Is there a reason why this never happens when he's home and can serve as a second set of eyes?  Murphy's Law runs this house.)  Dealing with an impaired pancreas is one thing, but managing diabetes in conjunction with vision loss is a whole new ballgame.  I now completely understand those meters they advertise on TV that talk.  And I'm forever grateful for the fact that this issue is temporary. 

With every nap comes a little more healing.  And thankfully yet again, the cornea heals fast.  (Breaks fast, too, little bastard.)  So I'm hoping that tomorrow brings full recovery, because next week is a busy one.  (Will I see you at SXSH and ePatient 2011?)  

For now, I'm hanging out in the dark, with sunglasses on, like a diabetic Batman.  

September 13, 2011

My Cornea Hates Me.

Maybe a little bit of dust got trapped underneath my eyelid two nights ago?  Maybe I flicked toothpaste into my eye?  Maybe there are eyeball gnomes that go in while I sleep and chip away at my precious cornea?  Whatever the cause, I woke up on Monday morning with my eye halfway to "complete mess," and it completed the transition over the course of the day yesterday.  

Back to blind in one eye.  Back to swollen eyelid and sore eyeball and extreme razor-blade pain every time I blink.  Back to not being able to read my meter or my Dexcom ...

Not that the Dexcom is any use to me today.  My eye was so painful this morning that I popped a few Tylenol to help alleviate the swelling. They aren't kidding about that whole "Tylenol chews up and spits out your Dexcom readings:"

Can you tell when I took the Tylenol?  :)

Why does this eye injury keep recurring?  If you've had a corneal abrasion and you have tips on keeping it quiet and soothed, I would love to hear them.  (I currently use Muro 128 and those Refresh eyedrops when the weather outside is dry.)  Because if this injury continues to lash (ha?) out every few months, I'm going to look into glass eyeballs.  

September 12, 2011

25 Years With Diabetes: What I've Learned.

What I've learned in the last twenty-five years with type 1 diabetes:

  • Some of what "they" said is wrong.  It just is.
  • There are times when "they" make a good point, and it's up to us as patients to figure out what information we react to.
  • The needles don't hurt as much now as they did then.  Lancets have become smaller and sharper, syringes can make the same claim.  Insulin pump sites, once they're in, usually go without being noticed.  Same goes for Dexcom sensors.  (But "painfree" is a misnomer and so subjective that medical device advertisers had best just steer clear of that word entirely.  All needles pinch at least a little bit.)
  • Progress isn't always shown in tangible technological examples.  Sometimes progress is being able to look at a blood sugar number without feeling judged by it. Or to look in the mirror without wishing you were different.
  • There is life after diagnosis.
  • Diabetes is sometimes funny.  It has to be.  If I didn't find ways to laugh at this shit, I would cry more.  And crying leads to dehydration, which is a precursor for ketones, which aren't fun.  So ... that brings us back to "diabetes is sometimes funny."
  • Diabetes sometimes isn't funny.  Sometimes this is the most serious disease in the world.  It's a strange balance, acknowledging both aspects of this chronic disease.  
  • "Comfort food," to me, is a jar of glucose tabs on the bedside table when a blood sugar of 43 mg/dL wakes me up in the middle of the night.
  • It's okay to cry about diabetes stuff.  It's okay to celebrate the victories, too.  This is life, and it's okay to feel all parts of it.
  • Food wasn't for fun or nourishment for many, many years.  Most of my childhood was spent viewing food as medicine; the means to an NPH peak's end.
  • I am grateful that I've learned to eat because I'm hungry.  Or because it tastes good.  Not just because I "have to."
  • Some days I feel like a steel magnolia.  Other days I feel like a wilted pansy.  Diabetes and flower similes aren't my strong suits. 
  • Diabetes scares me.  To my very core, sometimes.  I hate admitting that.  I hate fearing something that I have inside of me every day, something I can't shake in any way, shape, or form.  It's unnerving, never truly letting down my guard.
  • Diabetes scares me most when I think about how it may affect my child.  Which gives me a different perspective on what it was like for my parents.  Which makes me want to call my mom and dad and say "thank you."
  • Diabetes also inspires me.  Same; to the core.  It makes me work harder, fight longer, love harder, appreciate more.
  • Family isn't limited to those in your gene pool.
  • Testing my blood sugar is the best way for me to keep tabs on my diabetes.  I wish I could say that wearing a pump was the answer, or using a CGM, but those devices are tools.  Effective tools, but still just tools.  I achieve the best outcomes when I test my blood sugar and actually respond to those numbers, both mentally and physically.
  • Everything in moderation.  Including platitudes.  Turn the other cheek to platitudes.  
  • It took me a really long time to realize that perfection wasn't an achievable goal.  Diabetes isn't a perfect science, and you can't hit the bullseye all the time.  Maybe not even half of the time.  The goal is to always aim for it, and to keep trying.
  • It took me just as long to realize that diabetes-related health complications aren't my fault.  Diabetes complications are the fault of diabetes, not of me.  My job is to keep trying.  (See above.)
  • The word "diabetic" hasn't ever bothered me.  (Maybe because I'm lazy and I don't want to say "person with diabetes"?) 
  • The word "complications" doesn't just apply to retinopathy, renal issues, and neuropathy.  Diabetes is complicated in so many ways outside of the reach of a test result.
  • Emotional health is just as important - maybe more so, to me - than physical health.  Diabetes is a disease that requires your head to be "in the game" in order for your health to be optimal.  Emotional health needs to be nurtured just as acutely as your blood sugars need to be tested.
  • I've learned that I am not alone.
  • Let me repeat that:  I am not alone.  And if I'm not alone, then neither are you.  We are in this together.  And we can do this.
  • Success with diabetes, for me, isn't a perfect A1C.  Or a crisp, organized logbook.  It's not a week's worth of no-hitters.  Success with diabetes, for me, is feeling happy.  Despite, because ... whatever.  Just feeling happy.
  • And I feel like I'm succeeding. 
In our minds, as we cut into the cheesecake, it read "F*ck you, diabetes." We just didn't want to freak out the bakery ladies.  ;)
(Thanks for the diaversary cheesecake, CSparl and Birdy. xo to my loves)

September 09, 2011

25.

This Sunday marks the 25th anniversary of my diagnosis with type 1 diabetes.  But today I don't feel like blogging about it or reminiscing or calling Joslin and asking them to print my certificate of achievement.  My head is busy, but I don't want to pay it any mind today.

I love my family.  I love my friends, both online and off.  I love my little Bird and my husband. 

I'm starting my weekend early.  :)

September 08, 2011

Low Carbz.

From the old LOL Diabetes site

Ur doin it wrong.

New Dexcom iPad and iPhone App.

I'm not hooked on Apple products (I refuse to get an iPhone because I'm addicted to my Blackberry), but Chris and I do love that foolish iPad.  And I love seeing apps for diabetes devices stocking the virtual shelves in the iTunes store. Makes me feel like we're busting in to the mainstream, as a community.

Which is why I'm excited to see the first app from Dexcom.  (And it's free ... as these apps should be, in my opinion.)  While I'm hopeful that future apps include a way for the Dexcom receiver to transfer data to Mac products (because running parallels on my Mac is wicked annoying), this is a great start for people who are looking for introductory information on the Dexcom system.

One of the iPad screenshots - more here.


One of the iPhone screenshots - more here.

As a seasoned Dexcom user, much of this app includes repetitive information, but there is an FAQ section with answers to questions like "What is the Maximum Distance at Which the Receiver and the Transmitter Communicate" and "What does Error 0 Mean?"  This is information that applies to both newbies and veterans of Dexcom'ing.

The app is available now, and you can click on this link to download it yourself.  A Droid version is coming soon.

[Dexcom disclosure

September 07, 2011

Batting Practice.

If this lovely thing is a "no-hitter,"

:: sound of angels singing and kittens being petted ::

Then this shit day is batting practice:

:: that BEEEP BEEEP sound the alarm clock makes ::

Today, I'm hoping diabetes doesn't bat through the order every inning.

/baseball diabetes analogies

September 06, 2011

Back To School.

I want one of these.  With a big, fluffy kitten on the front.  Drinking coffee.Most of the Rhode Island schools are back in session today (a few days later than usual, thanks to the power of Ms. Irene), and I'm missing that "back to school" feeling.  School shopping with my mother, back when i was in grade school, was awesome because I'd always get notebooks, pens, and a new Trapper Keeper.  I loved the way the new notebooks smelled, and how a new pen would write, and damn if that Trapper Keeper Velcro wasn't the best in that first week of school.

New school supplies made me feel organized.  I liked that "clean slate" feeling, like I was given the right to let go of the past and start fresh.

I kind of need that again.

I'm not in a patch of diabetes burnout, so much as I'm in a patch of Mega Rut.  In this Mega Rut, I have picked up some very bad habits and they are proving to be difficult to shake.  Like ...

Not sleeping.  I love to sleep.  I love that feeling of laying down at night and tucking myself in underneath the down comforter.  I love a cold room, a cold pillow, and a warm husband.  I love not looking like I was dragged through town by a pony.  So why am I not sleeping?  Could it be the early mornings with the Bird, then the lack of work done throughout the day due to Bird-Watching, and then the late nights where I try to catch up on work?  The baggage under my eyes would cost me a lot if I had to check it for travel.

Not eating.  This sounds like a good weight loss method, in theory, but in practice, it's doing nothing but slowing my metabolism down.  On the average morning, it's almost noon before I've eaten something, despite having woken up with the baby around 7 am.  This makes me hungry, sluggish, and grumpy way too regularly (but it has proven to me that my morning basals are finally accurate and I can roll around with an in-range, flatlined CGM for several hours).  It also makes my morning pot cup of coffee send me to CrazyTown, where I'm so drunk on coffee that the laundry folds itself when I stare at it hard enough.

Being unorganized.  I seriously need that Trapper Keeper, because my to do list is long, scattered, and very hard to keep track of.  If it weren't for my desk calendar, reminder alarms set on my cell phone, and Abby, my mind would be a flooded.  As it stands now, my mind is hovering around the "class 2 rapids" status, but this fall is proving to be a very busy one, so I need to get my post-its in order.

Having a love/hate relationship with my inbox.  I love email.  I read every single one, and in my mind, I write these long, detailed responses with photos attached and iTunes recommendations.  Instead, I read the email and then draft up the response in my head while I take a conference call or empty the dishwasher.  And then I never send that lovely response, instead opting for one that's a few sentences and usually starts and ends with "I'm sorry I'm so late in responding!" 

Paying attention to Dex.  I am wearing the Dexcom 24/7 (and have been for over two years now), but I've been a little lazy with it, of late.  In the last two weeks, I've left the house twice without the receiver, and I didn't notice for another hour after I returned home.  (That means I wasn't checking it, which isn't a good trend for me.  The closer I keep tabs on that Dex graph, the better my blood sugars run.)  What's the point of wearing the sensor if I don't make use of the data?

So there are my current bad habits, but now what?  I need a bad habit bootcamp.  Or that there Trapper Keeper.  Either way, recognizing these issues is the first step.  Now that they're sitting here, in a list in front of my face, I need to do something about them.

School starts today for most of the state, and I'm taking a cue from their clean-slatedness.  Starting over is easy when you leave the baggage behind (or at least the baggage that's not residing under my eyes).  These are changes that need to be made and can be made easily, if I put my scattered mind to it.  ;)

September 05, 2011

Vlog: Name That Tune.

So I was afraid to say "Top Gun" or "Maverick" or anything related to Goose in this new Animas video because I never know where the copyright sidewalk ends (whoops), but just to confirm:  the Top Gun theme song both rules and is my new pump tune.  Here's the full vlog over at Animas:

Also, Jana started a wiki page for Animas pump tunes, so if you have a tune you want to share with the masses, visit her wiki and upload it!  Or visit her wiki and download Top Gun.  Either way, it's 'peace out' to Für Elise!

September 04, 2011

Sunday Snapshots: Patiently Waiting.

Her hair is impossible.

Patiently waiting to be old enough to ride the flying horses.

September 02, 2011

Irene Taught Me ...

Oh, this is mesmerizing.Hurricane Irene taught me:

  • That coolers aren't just for the beach or for beer ... they are for stashing insulin and cold packs, in the event that the power goes out.  Especially if you just had a 90 day supple of Humalog shipped to the house in that weird space-bag and now there are many, many bottles crammed into the butter compartment.
  • That having a gas stove is really convenient.
  • That we don't really need a flashlight, since I wear one attached to my hip at all times.
  • That putting away the deck furniture was really smart because the wind was crazy and everything that wasn't tied down or in the garage ended up taking flight ... except for that one, empty box of raisins that ended up being left outside by accident.  And didn't move.  The entire time.  Wind is no match for that SunMaid lady!
  • That when a tree falls in the yard, it makes both a huge sound and a huge mess.  
  • Also, that same tree can obliterate a fence in a matter of seconds.
  • And that it can come crashing to the ground in a matter of seconds, but it takes over a week to clean up the chaos.
  • That making sure the windows are securely shut is really important, because you never know when you'll wake up to the sound of the window slamming against the side of the house, banging away in the gale force winds.
  • It's surprising how animals and babies have this acute sense of impending inclement weather, but I didn't have a clue until the window started slapping.
  • That when you really calculate how many bottles of test strips you need over the course of a potential emergency evacuation, you can't count high enough.
  • Which made me wonder what I'd really do in a serious emergency, and that prompted me to panic about my survival rate. 
  • "We'd just have to eat you first."  Standard zombie apocalypse answer.
  • No, but seriously, do you have a diabetes emergency kit?  I always make one (with test strips, pump sites, insulin and insulin pens, etc.) but then I start grabbing things out of it and eventually it becomes just a plastic box with a few dust bunnies and one or two AA batteries.  Oh, and a quarter to change the battery of the pump with.  Chris and I talk about the importance of having a grab-and-go emergency kit for my diabetes stuff, but I never get around to making a proper one. 
  • Suddenly, a proper emergency kit has been added to my weekend to do list.
  • That entertaining a 16 month old babbling, pigtailed hurricane of our own, indoors, while the hurricane raged on outdoors was going to be a bit of a challenge.
  • That I want to submit "Siah" as a potential hurricane name for 2011.  Because she's worth it.
  • That the power can be knocked out for days just a few streets over while we enjoy the lights, cable, and Internet of our lucky home.
  • (And that being one of the few towns in RI that didn't lose power would make our house very popular for overnight guests, laundry-doers, and people who wanted to de-grime themselves.  Which is nice because working from home creates a certain sense of "talking to the cats as if they are actual co-workers," so I appreciate the visitors!)
  • That Twitter never, ever sleeps.  Even when hurricanes are beating down doors, Twitter continues to blaze on.  That's so the epitome of this song.
  • That bullet points are sometimes my favorite way to blog.

September 01, 2011

Diabetes Art Day: SUM Edition.

"Puuuuum," she says, lifting the hem of my shirt in search of my insulin pump. 

"Yes, that's my puuuuump.  Where's my belly button?"

She points.

"Where's your belly button?"

She laughs and pats her chubby belly, sticking her thumb into her belly button.

Art is how I will explain diabetes to my daughter.  It's how we'll make sense of this when words won't do.  But for now, we'll just color, drawing birdies and kitties and puuuuuumps.

Am I the only one who has trouble resisting adding an "f" to the word "art?"
Birdy and Kerri's contribution to Diabetes Art Day 2011

Visit the official Diabetes Art Day site to see some creative interpretations of life with a busted pancreas.  And a huge thanks to the brilliant Lee Ann Thill for giving us this outlet!

Visitors since November 7, 2005