Tuesday, May 26, 2009

Diabetes in the House!

Sonia Sotomayor, the new Supreme Court Justice. The first Latina. The third woman. And the first type 1 diabetic.

I don't know her political views. I've read that she's moderate. I don't even know what that really means. I guess what draws my attention to all these articles is the fact that she has type 1 diabetes. That interests me.

There is such a misconception about type 1 diabetes. The public think they know what it is, but they don't...not really. It makes me sad when I come across blogs that take sarcastic stabs at it. Funny? No. I hold to this - only the families/friends who have first-hand knowledge of the disease have the right to lighten things up with humor about diabetes. I won't even site the blog that tore up Sotomayor for having diabetes...don't want to give any credit there.

But, I will, however list several articles and sites where you can read more about this historic first. I am hopeful that Sotomayor's appointment as a Supreme Court Justice will give diabetes a spotlight...full of truth and public awareness.

So..."Diabetes in the House?"...yes, the courthouse! This could be a good thing.

Tuesday, May 19, 2009

All Shook Up

We had an earthquake on Sunday night. 5.0...well, it was first reported at 5.0, then down-graded to 4.7. Either way, it was un-nerving.

We are in Southern California. And, though I've lived nearly my whole life in this area, I will never get used to the earth moving under my feet. People may joke about it, laugh it off. But nothing can give you a more unsettling feeling than that.

I've experienced many earthquakes. I can remember as far back as...well...I think it was 1972. It was nighttime and I was scared. I vaguely remember my mom spending the rest of the night with me in my bed, calming my fears (or possibly hers). So when Sunday's 4.7 hit and my kids felt insecure, I could definitely relate.

Since that early memory, there have been many more that have made the news here in California. But none were as frightening as the 7.1 quake that hit the San Francisco Bay area (I believe it was 1989). As irony would have it, that was during a 2 year stint when I was living about 20 minutes from downtown SF. Most quakes do little, or no damage. However, this one was different. It really did make the routine of life come to a halt. Stores ran out of products. Roads were closed. Bridges broken. Freeways crushed. People actually lost their lives. There were no jokes then.

That was 20 years ago. I was young, on my own...responsible for no one else. I clearly saw the need to be prepared with food and water. And so, the experience did help me become proactive in emergency preparedness, if only for my own sake.

Enter marriage. Enter parenthood. Enter diabetes.

No longer am I on my own. I have 4 other people I need to consider. It's time to re-prepare our household. Time to re-stock water and food. C's pump supplies just arrived Friday. Time to stop cutting it so close. Time to stock up on extra insulin, test strips, glucagon, prep wipes, lancets, JUICE. It is not unimaginable that stores could close, the mail system be delayed. I guess this was a little wake-up call.

Thursday, May 14, 2009

Bits 'n' Pieces

1. You won't believe this story! It is stunning. And not in the good sense. I am choosing to think about this as a really good wake-up call to a lot of us parents. A boy's insulin pump was ripped right off of his body and stolen by a bunch of ignorant thugs. That's my commentary on it. Watch the news clip for yourself. http://cbs2.com/video/?id=102653 I believe it aired on May 13th. What brings it home further is the fact that it happened just about 10-12 miles away from where we live.

2. A diabetic Supreme Court Judge? I got into a downward spiral this week when I began to follow link after link about President Obama's Supreme Court appointment pick, Sonia Sotomayor. She has been a type 1 diabetic for the majority of her life. I guess the questions are hurling around the internet regarding her ability to do the job...being diabetic. In my opinion, to question this, is absurd. There are diabetic triathletes, for goodness' sake! Anyway...check out Amy's take on it all at Diabetes Mine -- one of the more rational postings on the issue.

3. Summer Reading List - Whenever this time of year rolls around, I begin to dream of all those lazy summer afternoons of sprinklers, lemonade and a good book. (It really is a dream. I have 3 kids to keep busy!) Nonetheless, I am beginning to form my summer reading list. Included, are some diabetes-related books, a cancer-related book and 2 "just for fun" reads.

* Pumping Insulin by John Walsh & Ruth Roberts

* Sweet Invisible Body by Lisa Roney

* Lop-sided: A Memoir by Merideth Norton

* The Hour I First Believed by Wally Lamb

* The Middle Place by Kelly Corrigan

Start dreaming and getting your list ready, too.

4. Engaging in Twitter-dom - I read a very intriguing article this week from a fellow tweeter (twitterer?) about making Twitter beneficial. We're relatively new at it so I've posed that very question several times in my head, as well as actually tweeting about it. If you're wondering about this like I have been, read this article and see what you think. Why Twitter Doesn't Work http://bit.ly/NkpRA

5. Our JDRF fundraiser is going full steam ahead! Our family has been wanting to do some kind of major fundraiser for the JDRF (Juvenile Diabetes Research Foundation). We participate in the annual Fall walk in Ontario with friends and family, but it always sneaks up on us without having done much preparation for it. So...we got to thinking...Since we spend so many Saturdays at the ball field and the Little League's annual carnival is fast approaching, why not set up a booth of some sort. We got the go-ahead from the board. The snack bar is loaning us the sno-cone machine. We'll bring the other supplies and sell sno-cones, regular and sugar-free! Pray for a hot weekend...Saturday, May 30th!

Wednesday, May 13, 2009

One Step Forward

One step forward...two steps back. That about sums up how we're feeling around here regarding diabetes. (And by "we," I mean "I!")

We've been focusing on diabetes-related issues since C's last endo appointment: Carb-counting (& measuring), logging everything, and on-time site changes. On top of all these things, I have been trying to divert attention away from not-so-friendly treats. Maybe we're focusing too intently? I don't know. But, I feel like all of it has back-fired horiffically on us recently. :(

1. Carb-counting really isn't rocket science when we have a nutrition guide to help...or C eats what we know to be 15 grams or such. However, then we start in with home-made goodies or snack bar food or items that we have no information for, and, well...it gets tricky. Oh, and that "regular" coke vs. "diet" coke issue was just plain bad this week. And we reeled from it for about 12 hours.

2. The logbook. Ug! We used to do it so consistently when C was first diagnosed. We never missed a number, a dose. For nearly 3 years we did it. And then, after C had the pump for several months, my thinking turned. "Why do we need to log all of this? All the info is right there in the pump!" Well, some things aren't in there...like illness, emotions, exercise, and decisions that go along with this juggling act. So, this week, we went back to logging. It's difficult. They say a habit can be formed in 21 days of consistent, repetitive behavior. We're only on day 4.

3. Then, there are site changes. It never fails, that when we try to get away with that 4th day, things get out of hand. We'd been doing pretty well the last few weeks. But yesterday I just happened to think "Hey, our supply order should have come by now!" (We order C's infusion sets, reservoirs and skin prep stuff online.) It had been 9 days since I ordered. I looked in the cupboard...no skin preps left. 2 infusion sets. 1 reservoir. I called. Order was being shipped today but not with the skin preps. They are no longer covered. Covered or not, we need them! Why wasn't I notified of this? Send them, please!! I was told we'd receive 2 separate orders by Friday. I know I cut it close with ordering but why does it take 12 days to get medical supplies that we NEED and always order every 3 months? (That's rhetorical.)

So triple ug.

Type 1 parents: Curious...How do you manage these wild beasts? Do you have a story, a trick, a solution? We'd love to hear from you!

Monday, May 11, 2009

The B.A.D. Ride

One of the upcoming diabetes events here in Southern California is the B.A.D. Ride (Bikers Against Diabetes). It is being held on Saturday, June 14, 2009. Bikers and cars will meet at several different locations to start the ride. Many of these are Harley-Davidson dealerships in the surrounding areas. They will make the ride down to Oak Canyon Park in Orange County. There, you will find all sorts of festivities: games, food, and entertainment. It is affiliated with the American Diabetes Association.

The B.A.D. Ride is found not only in Southern California, but also Northern California, Missouri, Kansas, Iowa, Texas, and Arizona.

Last year, we made the ride and met up with all the bikers against diabetes. What a sight! None of us are motorcycle riders, so we followed down in our family SUV. We were to meet C's kindergarten teacher there with her husband. (Yes, a Harley-riding kindergarten teacher!). Well, instead of us spotting her, she easily spotted us, among the sea of leather, tatoos and...well...we kind of stood out!

Anyway...we walked around with the "coolest teacher" around, ate a BBQ lunch, played some games and got to watch an intriguing trick-riding team (on Harleys, of course!) But the best part of the day was hanging out with C's teacher. She has been a loving, caring and involved teacher in all three of our kids' lives. It was special to participate in the ride with her.

We have lots of pictures of the day. To see our B.A.D. Ride photo album...
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Friday, May 8, 2009

Rollercoaster Ride

Last Saturday, our oldest got invited to a birthday bash at the local entertainment park...you know...miniature golfing, go-karts, video games, etc.
Well, my husband and I rarely think this way, but we both wanted to treat the youngers with something special that evening too. So after dropping off the older at the party spot, we 4 proceeded down the freeway to the next local entertainment park. (We live in SoCal...they're everywhere!) We didn't tell the kids what we were planning to do. I had grabbed boiled eggs, flavored water pouches, crackers, grapes, etc....that was dinner on the road. They didn't complain. They were more focused on "Where are we going?"

When we drove by the park and exited the freeway, they knew exactly where we were headed. And they were excited!! We parked the car, made our way inside the gate and began to walk around deciding on which rides we were going to spend our precious tickets. There was the "Whirling Spinner" and the "Nordic Ship." We passed something that resembled a teacup ride. Then, there it was!...the gigantic, rickety, very dangerous-looking rollercoaster ride!! That was it! They wanted to go on that one first. We stood there, underneath the loud, thunderous track and watched several turns being taken by other riders. It was so loud. The ground would shake with each pass of the coaster. Screams came from the riders and their faces showed a mixture of fright and glee.

I opted to stay where I was and cheer them on like a good mom (and one with a chronic neck injury!) There they went...my darling 7 year old, sweet 9 year old and dear husband of nearly 15 years. "Bye...have fun!" I yelled.

It was no more than five minutes later than I saw all 3 enter the coaster carts. I had them in plain view...no head pads or braces to block it. They were all smiling...waving to me as they rounded the first corner slowly. Clickety-clackety, they ascended the steepest part of the track. I no longer could see their expressions. They were going up...up...up out of my view. As they crested the highest point, I saw them. Instantly, the smiles on my precious little children vanished. Sheer terror replaced all signs of happiness. I watched as they swooshed past me with thunderous noise of the track. At that moment, I held my breath until I saw their little faces again. Swoosh! Again, I felt clamy as I noticed C's face, more fear-filled than the first descent. My 9 year old had a slight smile backon his face. Okay, he was having fun. But I felt sick to my stomach as I thought of C.

My thoughts within an instant: I spend so much of my days tending to my kids--scraped knees, tearful hearts and that thing called diabetes. I would do anything for them...any mom would. I pray for them. I teach them. I warn them of life's dangers. I protect them with all my might. And there they go...on a rickety old rollercoaster!

I waited patiently. Aaah...there they came, down the ramp...smiles from ear to ear! Big breath.

"Let's go try the Whirling Spinner!" they all said.

Wednesday, May 6, 2009

What My Sister Deals With--by C's 11 year old brother

My sister C was diagnosed with diabetes when she was 22 months old. Before C was 3 years old she would have to have insulin injections about 5 times a day. My sister is now 7. When she was 3 she got a insulin pump that puts insulin in her by the touch of a button. Every 3 days she gets her site changed for fresh insulin to go in her. Every day she pricks her finger about 8-10 times a day to check what her blood glucose is and see if she has to put insulin in her. When my sister is low or high in her blood glucose her stomach, her legs, and her arms start to hurt. She also gets a little dizzy sometimes. When she feels very icky she tells my mom or my dad. If my sister’s numbers go to low it can cause death, if my sisters numbers are to high to frequently.

What I’ve Done and What I Can Do to Help My Sister

I have helped my sister with certain things. I have checked on my sister when my mom says to. I have checked my sister’s blood glucose to help her and my mom. I can be sympathetic. I can tell her I wish I could understand how she is feeling. I can help her eat healthy. I can recognize when my sister feels low or high and have her check herself. I have also gotten my blood drawn for a trial, for scientists to figure out why people get diabetes.

Why We Need a Cure

We need a cure because every hour someone in the world is diagnosed with diabetes. More people have diabetes then any other disease or cancer in the world. Most people get diagnosed with type 1 diabetes by the time they are 30 years old. Diabetes takes people down a hard, harsh, painful, life-threating life. Many diabetics will suffer from kidney failure, blindness, amputation, heart disease and stroke. If my little sister goes through this I will feel horrible and sick to my stomach. My family and I have done JDRF walks to raise money for diabetes. I can keep on doing this to help those who have diabetes and those who will get diabetes.
(posted on big C's birthday!)

Monday, May 4, 2009

The "Famous" Doctor

We love, love, love the staff at CHLA (Childrens Hospital Los Angeles). When we were first diagnosed at the end of 2003, we were told to head down to L.A. and that "they" would take care of us. And they did! We found loving and caring nurses who would come to spend many a time on the phone with us helping us find our way in the new, dark days of diabetes. One of the nurses came to mean so much to our family that she is actually still on our Christmas card list!

For the first several years, our doctor was Dr. Kaiserman. The most ironic thing is the fact that he and I grew up together. We were in the same elementary classes--on up through high school. We felt a connection with him immediately and felt secure in his care. But as doctors sometimes do, he moved on to private practice and left us to choose a new physician.

We are now under the care of Dr. Jeandron. She is warm and sweet and became a "mom" not to long ago. A few appointments back, we were notified that the doctor would be out on maternity leave and we would need to see a different doctor on our next visit. We were given an appointment with Dr. Kaufman. I was excited because I knew Dr. Kaufman was the head of the endocrinology department there at Childrens! I thought, how great! We get to meet with an acclaimed physician!
So three months later, there we were, heading up to the 3rd floor in the tiger elevators. It all seemed routine as we checked in. C got weighed, measured and blood pressured. Finger poked, pump read, exam room assigned. We waited. I'd send C out the door to peek down the hall periodically. It was quite a wait, as I remember. But then, there was Dr. Kaufman! Yay! She came in and apologized for the wait. I knew the schedule was tight because of Dr. Jeandron being out on leave. We had expected a delay.

Dr. Kaufman sat down and introduced herself (though I knew who she was through seminars and family camp speaker times). She addressed C and asked how things were going--what were her interests and how she liked school. And then all the diabetes stuff was discussed. Numbers were tweaked. Exam was performed. Infusion sites checked. She sat with us for quite some time. She seemed amused at my story of seeing her book in a model house a few months back. We talked about lows that C had been experiencing at school. Our 504 plan was discussed. Prescriptions were written. And then she was gone.

C and I checked out at the front desk, got our next appointment with Dr. Jeandron, and headed toward the tiger elevators. An older gentleman held the door for us. He directed a question to C.

"Did you just have a doctor's appointment?"

"Yes, she said.

"And who's your doctor," he continued.

"My doctor wasn't here today," she replied.

"We got to see Dr. Kaufman today," I said.

The man smiled. I recognized him then. He was Dr. Kaufman's husband, the other Dr. Kaufman. As the elevator doors opened, he stepped out and turned back around. "She's the famous doctor, you know?" He winked and the doors closed. We continued down to level one.

"The famous one?" C asked.

I responded, "I guess so."

C began giggling.

"Wow! I got to see a famous doctor!"

Friday, May 1, 2009

Diabetes & Hollywood

Now, you're probably reading this post, thinking, yea, yea, it's going to be a list of all the entertainers that have diabetes. Well, no it's not.

First of all, it's been an exhausting week. Lot's of baseball, piano, gymnastics, doctors, working, studying and yes, Hollywood. C had her endo appointment at CHLA on Tuesday, which is pretty darn near Hollywood itself. You must understand that even though we live only 30-40 miles from Los Angeles, it can take 2 hours sometimes to get there or...more importantly, to get home. So we had driven down on Tuesday already. On Wednesday, I picked up C from school and whisked her away once again. This time it was for a real "Hollywood" thing.

A friend of mine, whose kids are way into the acting thing, came across a talent search for diabetic kids. She thought of us and referred C to the casting agency. They needed actual, honest to goodness, kids with sparkly personalities and diabetes! It would be for marketing a new diabetes device (this intrigued me). Well...lo and behold, we were called for an audition! We got our time slot and directions. It was kind of exciting!! I am no stage mom, that's for sure. So, my friend gave me some pointers and hints about the protocol of such auditions and advised me to "just be prepared" with a headshot and resume. What? She's 7 years old. What could possibly go on a resume?

With this little tidbit of info, I spent most of Wednesday morning fussing around, trying to pick out a photo of C and print up a resume. Ha! Turns out, once I actually typed it all up, it looked quite impressive (to me!) I listed everything from piano recitals to singing in the school talent show. We even went out shopping the day before for a new little outfit--bright and cheery (and not stained). So...we were set...Hollywood here we come!!

I picked her up from school. We checked her bg and she changed in the car. I had snacks all counted out and she ate as I drove. The traffic wasn't too horrible in the carpool lane. Our audition appointment was at 3:45. We arrived in the parking structure at 3:40! Pretty good, huh?! I was sure glad I had gotten cash out of the bank earlier in the day...parking was going to be $12. So, we parked, paid and I fixed her hair. It was weird, I felt so nervous, myself. Maybe that's why I never became a star! Oh well. C was not nervous at all...so that was good. We walked to the parking attendant and handed him the keys. He pointed us in the right direction. Past all the Mercedes and BMWs (1 Jaguar), we found the entrance. [Insert Name] Studios ---this is the place! We walked down a long hallway and followed the signs. It was a maze. Several moms and kids passed us by. I guess we were moving too slowly. We got to a large room, filled with...toddlers! Are we in the right place? The email said 8-14 year olds. Over in the corner we spied a small group of older kids with parents. That must be our group, I thought. Yup. Looked like we should sign in and wait. Minutes later, the young gal at the computer helped us set up our own account online for the online casting company.

"Do you need a resume?" I asked. "A picture?"

"No, not for this one," she said.

"Humpf," I muttered under my breath.

Well...we waited only minutes and C was called. I got up with her and the casting director said they preferred parents wait outside. Well, I wanted to at least check out the room. So the director said, "certainly."

I said "we've never done anything like this before." I peeked in the room. There were 2 other gals and a camera guy. I smiled and told C I'd be right outside.

After, maybe 3 minutes, C walked out. She was beaming and giggling. I asked her what they asked her to do. She repeated several questions they had asked her. She was told to look surprised and then to laugh.

I looked around at all the other kids waiting for their turns. Moms were primping ponytails. One little boy was practicing his smile. We were certainly out of our element. I looked down at C and smiled. She gave me a hug. And, as we started walking back through the maze to leave, I glanced at her shoes. She had worn the dirtiest, oldest, worn-out pair of shoes that she owns! Oh well, I thought. "Hey, if I were in charge of casting," I told her, "you'd get the job, for sure!"