Sunday, May 16, 2010

Dream a Little Dream...

Day 7 of Diabetes Blog Week:  Dream a Little Dream

Life after a cure...

I don't let myself imagine this very often.  Hmmmm.  This is difficult.  Life after a cure? 

I think on the day of a cure, I'd want to pack everyone up in the car and head to the beach.  We would eat, play in the sand and swim all day long.  I would throw a big bag of chips down on the blanket and let my kids have at it. 

I would never want to look at another carb count for the rest of my life.  I would never again count out 55 fish crackers.  I would throw away all but one set of measuring cups.  I would fill our top kitchen cabinet with paper goods instead of pump supplies.

"Feeling low" would simply mean that C was sad.  And when I'd find her crying, the first thing I'd do, instead of reach for her monitor, would be to hug her.

An invitation to a sleep over would no longer send chills down my spine.  A trip to the self-serve frozen yogurt store would be much less intimidating.  And buffet style meals would be friendly again.

Maybe spontaneous adventures would return to our lives.  Maybe.  I'm just saying, I have difficulty with this one, diabetes or not.

My thoughts on this topic are very dis-jointed.  I can't seem to get complete ideas down.  I don't know.

Saturday, May 15, 2010

Diabetes Snapshots...

Day 6 of Diabetes Blog Week:  Diabetes Snapshots

Showing off her new leopard pack.

On our plane ride to Orlando.

Taking care of her own bg check.

A1c report card.

World Diabetes Day.

The new pink pump.

Site change, ready.

This always brings joy.

Well, after pulling up a lot of pictures that portray diabetes, I found this one.  And actually, I like this one the best.

What does diabetes look like?

Sun-kissed, freckle-faced, and full of life.

Friday, May 14, 2010

Let's Get Moving...

Day 5 of Diabetes Blog Week:  Let's Get Moving...

Although sports and different activities can be challenging when diabetes is involved, we're determined to not let it stop C.  Whatever she's shown an interest in, we've let her try and try again.  Here is a run-down of her experiences:
Sitting out of a soccer game because of a low blood sugar number.

sport/activity and their biggest diabetes challenge
      • dance (ballet and tap) leotards over a pump site
      • swimming...the old "unhooking/hooking up" pump trick
      • soccer...trying not to go low and staying in the game
      • leotards, again and rolling/falling on site
      • softball...protecting the pump and staying on top of bgs
      • beach time...pump site and sand...need I say more?
And of course, along with all these forms of exercise, there is the danger of hypoglycemia, when and how often to test, and how to shove down a snack if need be.  The biggest upset is when, in fact, C does test low and she needs to sit out of the class, game or practice and wait for that bg number to come up.  It's happened on many occasions with just minutes to go in an exciting game.  Ug.
    Sometimes we fly by the seat of our pants.  But we're determined to let her try new things.  It takes constant thought and preparation.  It takes mine or the husband's continued presence at all practices and games.  It takes open and honest communication with coaches and teachers.  But when we see her hit that ball or make a winning pass, she's beaming.  That makes it all worth it.

    Thursday, May 13, 2010


    Day 4 of Diabetes Blog Week:  To carb or not to carb?...That is the question for the day.
    By the title, I'm sure you can guess on which side of the fence I stand!

    Our daughter, C, was diagnosed when she was just 22 months old.  Whether or not she would eat carbohydrates was not a question for us.  The question, rather, was how to count the carbs and bolus accordingly. 

    In the hospital upon diagnosis, the cafeteria staff definitely did not know how to feed a toddler with type 1 diabetes.  When meal time came, and a nice young candy-striper brought in C's dinner, I couldn't even imagine even myself eating what was on that tray.  Here's what I remember:  some kind of unidentifiable meat smothered in gravy, a mound of mushy vegetables, hot water for tea, a lemon slice and an enormous amount of sugar-free lemon Jell-o.  Yes.  This was what they offered my baby to eat.  The next meal looked way too similar to this.  And, the next.  And the next.  Finally I asked the nurse "Do you think they have a different flavor of jello other than lemon?"  It was ridiculous.

    She was down in her weight as it was.  And there's only so much sugar-free lemon Jell-o a person (at any age) can swallow.  We began sneeking in food that a toddler might actually eat:  mac 'n cheese, fish crackers, cheese.  It was so great to finally see her weight increase.  She had been, literally, starving!

    We don't place restrictions on what she can and can not eat.  The exceptions are:  regular fruit juice, regular soda, strictly sugar-y candy, regular popsicles and the like.  Those items are reserved solely for treating lows.  And, of course, there are the times when an extremely high blood glucose number dictates whether she can have a snack now or later.  It's a constant balancing act. 

    Some foods are just more difficult to count...but we work hard at it.  We have our problem foods (pizza, pasta and anything with corn in it) but we don't deny her these things.  We may not hit the mark each time, but we correct and move on with life.  We want C to grow up with healthy eating habits and a great self image.  We want her to enjoy food, to feel free in choosing what to eat.  I guess you could say we want her to have her cake and eat it, too!

    "Lemon Jell-o?"
    "No, thanks.  I'll have the chocolate cake!"

    Wednesday, May 12, 2010

    Our Biggest Supporter(s)

    Day 2 of Diabetes Blog Week:  Our Biggest Supporters

    Okay, well, hmmmm...

    Not to go the lazy route, but I feel it only fitting to refer to a post I wrote several months ago when I was privileged enough to be the featured blogger for the Diabetes OC.

    C was diagnosed on December 29, 2003. A diabetes community? We were it. We knew no one else who had type 1 diabetes. Our family and closest friends were as supportive as could be, but they, too, had no idea what this disease would mean for our family. It felt as if we were placed inside a maze. The only thing we could do was move forward.

    Hospital. Education. Prayer. Sleepless nights. I remember being discharged from the hospital on a Friday. We had to be on our own until Monday morning when we were set to be at CHLA (Childrens Hospital Los Angeles), where the doctor assured us that we’d be taken care of. But we had to get to Monday. I was so scared. Injections? All on our own? I had dropped out of the nursing program in college because of this. The perfect irony.

    I used the doctor’s cell phone number several times that weekend. But we did get to Monday. There we were at CHLA, learning soooo much. My head ached. We were given a gigantic notebook full of diabetes stuff – carbohydrate counting, scheduling, the different insulin, injection sites, etc.. And, that’s when we first met those wonderful people at CHLA…Dr. K and the dear, sweet nurses. How we clutched to them for our daughter's very life.

    So, now, it was us, close family and friends, the CHLA nurses and Dr. K...our diabetes community. It was scary. It was lonely. Because, really, when we came home, and we weren't on the phone with the nurses, and Dan went back to work, and the boys were in was just us...C & me.

    Family and friends surrounded our little family with meals and help with the boys. But when it came to the diabetes stuff…I was it. I remember thinking “I did not sign up for this.” But as you all know, the job was mine, applied for or not.

    On the phone with nurses constantly...I can still hear their calming voices, helping me to gather my senses enough at 3 in the morning to measure and give an injection of 1/8 of a unit of insulin to my baby.

    During one of those first weeks after diagnosis, I had to get my wits about me in order to pick up my oldest (then, in 1st grade). As I wheeled C’s stroller past the classrooms, someone came walking right up to me...gave me the biggest hug with tears in her eyes. “My name is K, and I know exactly what you're going through.” She handed me a bag, over-flowing with goodies for C...cute band-aids, Crystal Light mix, small bags of snacks (clearly marked with carb counts), stickers, small toys, a wonderful purple teddy bear...and her phone number. She said “diabetes is so difficult. Call me whenever you want.” Come to find out, her daughter was a second grader that year and had been diagnosed when she was just 3 years old. it was us, friends & family, CHLA staff, and now...K & her family. I can't tell you what a comforting thing it was to hear her say that diabetes is's so difficult. In a strange way, that eased the burden slightly. Because, finally, someone else felt it too. I wasn't alone. To this day, when someone tells me something like "Oh diabetes?...Well, at least it's manageable." Oooooh...I just want to scream! It’s hard, people! And, no, sometimes it’s not manageable at all.

    Well, time has passed. It’s been over six years of learning, failing, trying… In those five years, we have met 3 other families in our immediate city with type 1. I have passed on the goodie bag to another family I heard about through a friend. We’ve met a newly diagnosed toddler and family at a neighborhood park to talk to and encourage in all this crazy stuff. We’ve been welcomed with open arms to a JDRF walk team and have joined them for the last 4 years. We’ve spent time at Family Camps through CHLA talking with dozens of other families with stories so similar to ours.

    So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and…

    Enter the DOC.

    I’ve been a lurker for years now. It started with searches about diabetes, the pump, a 504 plan, etc. And then, I came across a blog about real life with type 1 diabetes. This was a young woman’s life, out there, nearly every day for me to peer into, and learn, and laugh. Her writing encouraged me so much. Here was this lady, living a full and eventful life…with diabetes. Her writing was so rich, so vibrant, so full of humor! What hope I found at her site, sixuntilme.

    Kerri’s blog pointed me to others. I couldn’t believe the wealth of diabetes knowledge I found…not from medical people, per se, but patients themselves. These were real people living wonderful lives, despite diabetes.

    So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and “just the tip” of the DOC.

    Since writing the above post last June, we have met 3 more families living with type 1 diabetes.  I am always amazed that there is such a strong connection with these people.  I lean on the wisdom and experiences of other D parents who have spent many more years on the management of this disease.  It is often refreshing to simply get a different perspective on life with diabetes. the last year or so, there have been connections made with countless PWDs (people with diabetes) in the online community.  I have felt such a warm welcome from them.  And though I do not deal with diabetes in my own body, these people have surrounded me, as well as other D parents, with open arms.  What a great comfort to know that, really, at any given time, day or night, I can go to them with a thought, a question or simply a need for someone else to know what I'm feeling.

    Tuesday, May 11, 2010

    Making the Low Go

    Day 2 of Diabetes Blog Week:  Making the Low Go

    I was just talking to another D Mom last weekend about this actual sugar sources. I'm always curious about what other type 1s use for lows.  Juice is an obvious choice.  For us, a juice box can get C's number up fairly quickly but continues to make it climb until she's left with a nasty high number and then the yo-yo effect takes on a life of itself, not settling down for, sometimes, hours.

    As we talked, a flood of memories came back to me, surrounding all the gobs of information we tried to digest at the time of C's diagnosis.  We were given a matter-of-fact sheet of paper with a list of fast acting sugar options.  They included:  packets of sugar, tubes of frosting and life savor hard candy.  Of course I ran out and bought it all.  We had 2 tubes of frosting at the bottom of her diabetes bag for nearly 2 years.  Never used it.  Finally we got rid of them after one exploded from being jostled around for so long.

    Yeah...a tube of frosting..."yuck," we both agreed, my new D Mom friend and I. 

    She told me that her son, now 17 years old, had always been told by his endo doc to use the standard glucose tablets.  But when he was younger (diagnosed at 6), she would fix him a "sugar shot."  This was a mixture of 1 tablespoon sugar dissolved into a Tupperware Tiny container of water.  "It was one gulp," she said.  "It was quick, easy and he loved them."

    During my tweet-up time with Melinda, another D Mom,  her advice on bringing up a low, was chocolate milk.  It kind of goes against the rules of fast-acting sugar sources as it contains more than just sugar.  It has fat and protein, as well.  I've always had the understanding that anything but pure sugar-y carbs can possibly slow down the blood sugar rise.  I wasn't too sure about this one, but we went for it recently.  And, by golly, it seems to work like a charm!  We've gone through several containers of chocolate milk in the last couple months.  There is a high enough sugar content to get that blood sugar up quickly.  The fat and protein help prevent any crashes, especially near bedtime or in the middle of the night.

    ***I guess this is where I must reveal that, although I have a ton of experience with my own daughter's diabetes management, I am not a medical professional.  And, any information you may read here is not meant to be advice for anyone to try at home without first seeking the professional, medical advice of your own doctor.

    I'm always on the look-out for new ideas.  Those glucose tabs really do their job quite well.  They're convenient, portable but kind of expensive.  And sometimes, I hate shoving those big chalky things in C's mouth.  We've ventured a bit, in the last year or two, into the candy realm:  Smarties, jelly beans, Skittles.  But candy has been a little unreliable for us.  She may clock in at 63, eat a couple candies and retest even lower.  At which point, we tend to panic and over correct.  Then we ride the rollercoaster for several hours.

    We're liking the chocolate milk thing, at the moment.  We might try the sugar shot idea next.  I can't wait to post this thing and cruise around the blogosphere to find some new ideas from others out there!

    Monday, May 10, 2010

    A Day in Our Family's Life...with Diabetes

    Thanks goes to Karen, my knitting friend, over at Bitter-Sweet, for rallying the bloggers in the DOC for the 1st annual Diabetes Blog Week!  It's an awesome idea.  And she already has a list of 100+ bloggers set to type their hearts out this week!  Way to go Karen!!

    And, it's not too late to join in the fun!  Just head over to her blog and let her know you're in...She's even gone the extra mile and given us some great topics.  I totally appreciate that because I could use a little jumpstart this week.  : )

    DAY 1:  A Day in Our Family's Life...with Diabetes

    6:30     Wake up; get myself together

    6:45     Go down the hall...wake up Middle C, wake up Big C, go in and do first bg check on C...123...beautiful!

    7:00     Set out breakfast stuff...make C's bag...bolus C accordingly...say the words "hurry up!" about 100 times...teeth brushed, hair fixed, sunscreen on...

    7:50     Out the door with C and Middle C...pick up one of C's friends

    8:00     At school...quick prayer...hugs and kisses...say bye to Middle C...walk w/C to Health Office...drop off diabetes bag and with Health more hug to C

    8:20     Back home...turn on computer...put a load of laundry with Big C as he gets ready

    8:40     Out the door with Big C...pick up one of his friends

    8:50     Drop off the boys at middle school crosswalk  (no hugs in public...just a "see ya later" and a "have a great day!" my hug at home!)

    9:00     Back home...back to work

    9:45     Get a call from school:  C's at 101...Health Aide will bolus for a 10 gram snack

    9:50     work, cleaning, laundry, errands

    11:45   Get a call from school:  C's at 89...Health Aide will bolus for 31 gram lunch

    12:00   Lunch for me!!

    1:00     Get a call from school:  C's at 167...good number prior to PE correction bolus...back to work for me

    2:05     Pick up C and little friend...drop friend home

    2:15     At home...wash check:  118...bolus for snack...18 grams...start homework

    2:50     Pick up Middle C

    3:00     Finish up snacks...homework...piano about the day

    3:30     Pick up Big C...rinse and repeat!

    3:45     bg check:  178...good number prior to gymnastics...detach her from the pump

    4:00     Take C to gymnastics class...hang around class with boys dressed in baseball practice clothes of course!...leave class to drop off Middle C to his practice

    4:45     Back to gymnastics to pick up check:  113...perfect! pump...

    5:00     Drop Big C off at his practice

    5:15     Back home to dinner already prepared in the crock pot...fix salad...C sets the table

    6:30     Everyone's back home including the check:  100 (love that #!)...DINNER!

    7:00     Dishes...showers (unhook C from pump..."free shower" perhaps?)...finish change for C

    8:30     Goodnight to C and Middle C

    9:00     Goodnight to Big C

    9:30     Bg check:  125...relax...finish up computer work...TV shows...

    11:00   Check on more bg check:  119


    Okay...I confess that the above scheduled day has NEVER happened.  Maybe it is my perfect day with diabetes...Maybe it's what I'd like to experience on a regular basis, with diabetes.  But the truth is:  there are no typical days with this disease.  There are those times when C will have several in-range numbers in a row...and it's awesome!  And, those readings of "100" them!  (Sometimes we love them so much, we take pictures of the meter!!)  But honestly, diabetes does not behave in any typical pattern day to day.  In fact, C could eat the exact same foods, same amounts, same boluses of insulin...even the same amount and intensity of activity and get a huge range of numbers.

    It's tiring.  It's frustrating.  And sometimes, it's very unmanageable.  But, we persevere.  We must.  We continue to strive for those in-range numbers, 70-120 or so...

    On many days, there are mistakes made.  C's diabetes bag might be forgotten at home.  I might overlook that she's down to just 1 test strip.  There have been countless trips back to school.  The nurse might be absent and the checks are up to me to do.  There have been mornings when we've forgotten to bolus for breakfast and she ends up at 427.  I've raced down to school to do emergency site changes when the tubing has major air trapped in it or her site was pulled out at recess.  Or, maybe she's had a couple big numbers in a row and, no matter, how much we correct her, she just doesn't come down.

    So, a day in our family's life...with diabetes?  It's different every day.  It keeps us on our toes. for coming home to a prepared meal in the crock pot??...rarely does that happen!

    Monday, May 3, 2010

    A Real Sob Fest

    This has never happened before.  It seriously pulled the rug right out from underneath my feet...and it hurt (we have tile floors.)
    C does not remember life before diabetes.  She was still a baby when the diagnosis was given.  Finger pokes, injections, site changes, 3 a. m. gulps of juice?  They're just a part of her life.  She's never known differently.  In fact, I honestly marvel at how she handles it all...most of the time.  She is a strong girl.  So her reaction the other day really took me by surprise.

    For us, I would estimate that 80 % of site changes are relatively painless and go off without a hitch.  But then there is the other 20 %.  For sometimes unknown reasons, the infusion set just doesn't cooperate.  It may hit scar tissue or a nerve and it can send C an excrutiating *zing* of pain...I hate when that happens.  When this is the situation, I usually ask her, "Does it hurt enough for me to pull it out and try again?"  There has only been one time when she said, "yes."

    So, the other day when we were changing the site, it happened to be a bad know, one of the 20%.  But, we got past it with just a few tears and I continued cleaning up the pump site aftermath.  I was just about finished when I heard quiet sobbing from the family room. 

    I walked in and found C quietly crying into a pillow on the couch.  I asked her if she was alright, did her site still hurt?  Through her choppy, tearful breathing, she told me her site was fine.  She brought her head up from the pillow, looked me in the eyes and said, "When I grow up, I don't want to have diabetes!"

    Well, it didn't take long until we were both sobbing and hugging each other.  Could this have been the moment when her reality hit her square in the heart?  I want to cry right now just thinking about it.  At 8 years old, she was formulating the intelligence to know that diabetes is a life-long disease.  Just like that.  I was at a total loss for words.

    We sat.  Hugging.  Crying. 

    I have tried with all my might to not let on how scared I really am regarding this disease, at least to her.  I've tried to stay strong, to find the positives in all of it.  We do the 3 month endo visits, the JDRF walks, the fundraisers.  However difficult it is, I reach out to people and share about her diabetes management to those around us.  And, yes, I do cry...but not in front of her.  Never in front of her.  This day was different.  I could not hold it back.

    Through leaky eyeballs, I told her how I wish I could take this from her.  If, somehow, God could miraculously remove diabetes from her little body and put it in me...I would gladly accept it.  I told her how sad I was when she was diagnosed.  And how much it hurt my heart to poke and prod her.  She was my baby

    We did more hugging.  Middle C walked in the room whistling a tune.  He took one look at us, raised his eyebrows, made a 180 degree turn and walked right back out.  Thank God for that.  C and I looked at each other and she gave a little chuckle.

    "We must look like a mess!" I said.

    Never fear, we ended our sob fest on an upnote.  We both breathed deeply.  I told her what a brave and strong little girl I have.  She, of course, corrected me.  "You know, I am 8 now Mom!"

    "Yes, honey, you're a wonderful 8 year old girl."  I said.  And, I let her know that I would always be there to help her with diabetes.  And that we would continue hoping for a cure and doing the best we can. 

    "I truly believe God has big plans for you, Sweet-pea.  You're gonna do great things in your life...maybe even because of diabetes."