Frozen

"Do you have diabetes?"

"Wha - What? No, no I don't" I say, looking up at the doctor's face— trying to breathe through the pain.

"Now, lie still and try to relax your arm," he says, taking hold of my right hand once again — then lifting my arm straight up toward the ceiling.

And again I try to breathe, as this time the doc moves my arm slowly back toward my head.

Only he can't get it anywhere near my head.

Like there's some large invisible wedge between my arm and the exam table.

"Well, this is a classic case," he says, bringing my arm back down by my side and then turning to the resident sitting in a chair next to the exam table — a young dark-haired woman wearing large white-framed eyeglasses. "No history of trauma, several months of rapid loss of motion... let's turn the arm inward."

Taking hold of my wrist and elbow, he bends my arm at a right angle and attempts to twist it down toward my stomach.

I cry out— because that tiny motion feels like he's just stabbed the top and front of my shoulder with a knife.

Breathe... breathe...

"Range of motion is lost in all directions," he says, with a note of finality that makes me queasy.

Placing my arm by my side, he turns once again to the resident. They continue talking about my symptoms, my history— while I stare at the ceiling, tears sliding down into my hair.

No, it's not just what they're saying, it's the damn pain still reverberating from the top of my shoulder down to my elbow.

Please just stop.

"... so we have a severe loss of motion in all directions, high level of pain... we're dealing with only one of two things, aren't we?"

"Yes," the resident responds tentatively.

"And what tests would you order?"

"X-ray."

"Yes— which was already done, showing healthy bones with some calcification on an otherwise healthy rotator cuff, meaning we can rule out... what?

"Arthritis," the resident says, sounding more confident.

"Correct. So what is the only other thing this could be?

"Adhesive capsulitis."

"Exactly!"

They smile at each other, clearly pleased that this resident gave the right answer.

I clear my throat.

Both turn toward me.

"Yes," the doc begins, "I'm very sorry, but what you have is adhesive capsulitis — a "frozen shoulder." It's a painful condition- "

"Yes, I know."

"... one with a very long recovery period. First, understand that you didn't do anything wrong. There's nothing you could have done to stop this. No one is really sure why this happens or how. We do believe that there is an autoimmune component to it— partly because the majority of those who suffer from the condition have diabetes."

"My son has type 1 diabetes," I say, distractedly, pulling myself up so that I'm seated on the table, legs dangling over the edge like a little kid's.

The doctor tells me I'll need physical therapy for as long as a year or more. He tells me about the three stages — "freezing, frozen and thawing" — and that to minimize range of motion and muscle loss, I'll need to do a lot of work. A lot of painful work.

"What about a cortisone shot?" I ask, hopefully.

"A steroid shot won't cure this, and we see mixed results when using it to treat frozen shoulder symptoms, but it might relieve some of the pain for a short time."

"Could you give me a ball park percentage of people who present like me and actually experience pain relief from the shot?"

"I'd say it's about 50%."

"Oh."

"It's always something we can try," he tells me, "if the pain becomes unbearable."

Three hours ago, when I arrived for my appointment with this specialist — this orthopedist who deals only with shoulders — I'd been so ready to plead for a steroid shot...

But now.

"Well, it's pretty bad at night and if I challenge it in any way..." my voice fades and then, "I think I'll hold off on the shot today."

So that's it.

I've heard about this thing, but could never really appreciate how bad it was until now.

Until I couldn't go to bed without waking repeatedly in crushing pain, simply because I rolled onto my shoulder.

Until I couldn't get my coat off without a struggle.

Until I couldn't reach my back pocket.

Until there was no sledding.

(Not even on the backyard hill)

No hugging my children without pain...

I don't think I've stopped shaking since yesterday's appointment.

Growing Pain

Over the last four years I've received messages from readers telling me how we're doing a "beautiful job" helping Joseph manage his diabetes and that I'm an "amazing" mom.

Well at the beginning of last month, I felt about as far from amazing as any mom could get — and even now, I'm still a little shaky.

You see, Joseph was sneaking food, treats mostly — but worse, he wasn't bolusing for them.

When I first found out that he wasn't being truthful with us, it hurt.

A lot.

But the not bolusing, well that just froze me in my tracks.

For several days and nights after I realized what was going on, I couldn't think of anything but what this might do to him in the long run — not just the effects of the high blood sugars, but the habit he seemed to be falling into.

And desperately, I wondered why?

We'd always worked together on this stuff, but now...

It started with small things, a candy wrapper in his room, a number of unexpected high blood sugars... coming to a head just after Halloween — when we left a bright red plastic bag filled with nearly 4 lbs of candy sitting on our kitchen counter.

(Stupid to have left this out, I know.)

Within a few days the bag weighed considerably less.

I discovered this after yet another argument with Joseph about him having eaten a snack without bolusing — this time, a chocolate chip granola bar.

His blood sugar was 404.

I asked him why he hadn't bolused.

"I don't know," he said turning away from me.

I got upset, choking out that I didn't want him to hurt himself. That if he gets in the habit of eating without insulin, he could set himself up for other health problems — serious health problems...

And when it seemed like he was tuning me out, "... some people have lost their sight because they ignored their diabetes, because they didn't take care of themselves."

Immediately, I wanted to take it back.

"Wait, Bud- "

But he was already halfway up the stairs, heading to his room.

Shaken, I returned to the kitchen to start making dinner. To calm down. That's when I noticed that red bag on the counter next to the stove, and — looking at it closely for the first time in a few days — saw the empty wrappers sticking out of the top of it. I opened it wider, and there were piles of them.

Oh no.

"Joseph," I called up the stairs, "was that granola bar the only thing you ate?"

No answer.

"Joseph— please, come downstairs."

A moment later he walked slowly into the kitchen wearing an inscrutable expression, then his eyes traveled to the red bag on the counter.

"No, I had a mini Snickers too."

"But why, Bud? It can't feel good to be high... if you eat something, please, you have to bolus for it."

"Yeah, I know." That's all he said.

The next afternoon, when he arrived home from school, I asked Joseph to sit down with me on the couch in our lower level. To talk.

"What's really going on, Bud?"

"I don't know... it's just hard having diabetes... I mean, no one else has to think about this stuff, they just eat what they want when they want. You know what B told me on the phone last night? He has his Halloween bag under his bed, his parents have no idea it's there... "

"But Honey- "

" ... and when I see your face when I have a high blood sugar, I just feel bad."

"Bud, I- I'm sorry. I don't know what to say... If I look upset when you're high, it's not you... I'm not angry or disappointed in you, I'm just worried about the high. I'm sorry that I made you feel like that. No matter what we do, there are always gonna be highs, lows — we can't make this perfect. Nothing is perfect."

"I know, I just hate having this," he said, his voice catching — and then he looked down at his hands for a few seconds before going on, "and please Mom, please don't say I'm gonna go blind."

Looking up at me, eyes wet with tears, he suddenly looked very young.

I put my arms around him— my own tears dripping down onto his shoulder as I held him close.

"I'm sorry, Bud — that was a horrible thing to say. I was so desperate to get through to you. I don't want to scare you, I just want you to take care of yourself. Listen, we are going to figure this out, I promise."

For a moment, we just sat there and said nothing.

Finally, we both stood up. "Hey, I'm hungry," he said. Then, without missing a beat, he pulled out his meter and pricked a heavily calloused finger.

"189... I can wait until dinner."

"No, Bud - go eat something now if you're hungry, just bolus for it."

"Okay," he said, "I'll have a banana," and he ran up the stairs taking two at a time.

Later, with the rich smell of ratatouille filling the kitchen, I called upstairs to the kids, telling them dinner will be ready soon, giving them the 10-minute warning. Evan clomped heavily down the stairs, shuffled into the kitchen and grudgingly agreed to try the ratatouille, but insisted that she "hates" polenta.

Shaking my head, I handed her some utensils to put on the table.

"Bud, can you do a check?" I said to Joseph, while pulling four white plates out of the cupboard.

He's 249.

"Hey, did you bolus for that banana?"

"Yes," he said, "two units." Then he filled several glasses with lime fizzy water, placed them on the table, and headed back up to his room.

A few minutes later, while standing next to Ryan at the stove, I noticed something on the floor in a corner of the kitchen— a large, empty, silver can.

And immediately I knew. Because Ryan's mom had called me earlier that day to ask if she should bring more cookies when she comes down in a couple of weeks. I'd checked that can and told her "yes" — because there was one cookie left.

I walked upstairs, knocked on Joseph's bedroom door and just asked him.

"Yeah, I had one," he said without looking up.

"When you had the banana?"

"Yeah."

"And you didn't bolus for it."

"No, I didn't," he said quietly.

"But, why?" I asked, desperate for an answer.

"Because I knew you wouldn't want me to have one. That you'd rather I made a healthy choice."

"Bud, even if you didn't have diabetes, I'd encourage you to eat healthy — that's what Mom's do — it's the not bolusing that really scares me."

Then I turned around, and walked back down the stairs, a massive lump sticking at the back of my throat.

I don't understand — he can have treats . . . when we have dessert, he has dessert; when he wants to go get ice cream with his friends, I let him...

His last A1c was 8.7

It's been creeping up again, thanks to many unexplained highs— highs I thought were due to the hormones of a growing teen (and maybe that's at least partly true), but now I don't know.

Joseph and I have always been able to talk about things, about almost anything, really. But lately, we've been arguing a ton.

I don't know what to do.

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

I wrote much of this post about three weeks ago — since then, I've done a good deal of crying and a lot of thinking. I've also gone online and — among other things — read this thread on tudiabetes.org. I discovered that what we've been going through is fairly common.

Just knowing we weren't alone gave me strength — and made me believe that we could get through this.

It took a lot more talking — and far more listening — before it finally hit me:

Joseph's sneaking food and not bolusing for it may have had less to do with deprivation than it did with him needing more independence.

(Yes, I realize to some this may sound counterintuitive, but hear me out.)

I honestly believe that by making choices he knew I wouldn't like, by not bolusing, he was struggling with us — with me — to "take the wheel." To show us that if we continue to drive this thing and not trust him to do it, we are going to crash.

He's going to crash.

(Does this make any sense?)

Joseph knows more about nutrition than most people and eats healthy food at home; he knows how to count carbs and how to bolus for food better than we do.

He has a good foundation.

Now, while we've let him eat like a kid and, more recently, like a teenager, he's always asked or sent a text to one of us when he's going to eat a snack, with carbs and a bolus calculation — and for a long while now, 99.9% of the time we text or say "go for it."

And I think it's that routine that needed to change.

Sooo...

Two weeks ago, I went up to his room, sat down next to him on the edge of his bed and took a deep breath.

"Bud, how would you feel about eating snacks and not calling or texting me about them? About coming home from school and getting something out of the pantry without checking with me or Dad first?

Still checking your blood sugar and bolusing, but not checking with us?"

His face lights up.

"Really?"

"Yes, really. Bud, I've been stupid. I should have done this a long time ago. You know, when I was your age I used to eat these things called "Hot Fries"... Andy Capp's Hot Fries. Never asked my mom, I just walked down to Prevites Market, bought a bag and ate them. And I loved Nestle Crunch bars, too. Now don't get me wrong," I add quickly, "I didn't sit down and eat masses of them, but I ate treats when I was a teenager. And I didn't ask for anyone's permission to do it... I want you to be able to do that too."

I'm about to say more, but I can't — because Joseph has me in a bear hug.

"Mom, I love you," he says, holding me tight, "and I'm sorry about not bolusing. I'm really, really sorry."

Then he pulls away from me, suddenly looking much older.

"I can do this, Mom."

And for the first time in weeks, I feel like I've done the right thing.

Giving Thanks... and Fight It! Friday

As we've done in previous years, we'll be celebrating Thanksgiving with friends. Cooking, talking, eating... I just love it.

Though I'm still not sure what dish we're bringing.

I'm thinking something chocolate.

(Maybe what I made that one year)

Anyhow, I wanted to check in-- to wish you all a Happy Thanksgiving, and to let you know that a post is coming.

A much longer post.

We weathered a storm recently -- something I was hesitant to blog about. Seems that unloading the heavier stuff doesn't come as easy as it used to... guess I'm out of practice.

Anyhow, that post is almost finished.

In the meantime, I wanted to bring your attention to a post-Thanksgiving online fundraiser put together by Christopher Thomas over at Diabetic Rockstar.

The campaign is called Fight It! Friday and the goal is to raise $4,000 for individuals with diabetes (and their families) who are financially struggling/uninsured. Money raised will help cover their medical costs and supplies over the holiday season.

Chris is asking folks to give just one dollar. Please click below and make a donation. It takes just a few seconds.


I guarantee you cannot find a better way to spend a dollar (or more!) that day.

World Diabetes Day 2009

People are gathering, talking, celebrating...

Blue is everywhere.

Once again, I'd like to add my son's voice to the chorus as he shares some of his thoughts about managing Type 1 diabetes and how he educates/involves his friends.

(We had a lot of fun doing this... our own mini WDD celebration.)





*Note: The blog stays blue until the end of the month in honor of Diabetes Awareness Month, returning to the usual orange-red hue on December 1st. :-)

D-Blog Day 2009

November is Diabetes Awareness Month, and today is D-Blog Day -- conceived four years ago by Gina Capone at Diabetes Talkfest as a means of celebrating the power of this ever-growing online community to share, to educate, to support anyone willing to write their story, make a comment, or simply read a d-blog.

My son was diagnosed with type 1 diabetes just over five years ago -- and honestly, I don't know how I would have coped had I not blogged about our lives here. I needed a place to unload -- but more than that, I needed to find others who could tell me that, yes, we could do this.

That my boy would be okay.

Sometimes it was hard, reading those other stories. Hearing about the frustrations, the complications, the fears this disease can instill in those touched by it.

Nevertheless, I needed to know.

But then too, were the stories about coping -- about thriving -- despite everything this disease throws at you.

So am I now certain that my boy will be okay?

No, I'm not.

But thanks to this wonderful community, I know he has an amazing shot at being so much better.

An Update from the Infirmary

First-- Joseph is doing just fine.

But I'll backtrack a moment because when I googled "H1N1" and "child with diabetes," I got nothing -- reassuring or otherwise. So here is our experience thus far:

As I said in my last post, Joseph spiked a fever early Friday morning. Well, by early afternoon he was showing all the symptoms: cough, headache, fatigue... and his fever had climbed to 102 two hours after I'd given him a fever reducer (ibuprofen).

In the meantime, his endo's office faxed a prescription for a 5-day course of Tamiflu to our pharmacy -- Joseph received his first dose by 10am (within four hours of showing symptoms).

The worst of this thing came overnight, when both his blood sugars and body temperature skyrocketed:


Amazingly, he spilled only trace ketones.

Further, by morning Joseph's fever broke and his sugars came down.

We saw a two-hour post breakfast bg spike before he joined me and Evan on the couch early Saturday afternoon. The three of us cuddled together under a soft blanket while I read Prisoner of Azcaban aloud for the next hour and a half.

Then Joseph stood up rather suddenly and headed toward the kitchen.

"Bud, are you all right?"

"Yeah," he called back, "I just want to do a check."

"47" I heard him say.

Immediately I'm off the couch.

"Bud, did you feel like you were dropping?"

"Just a minute ago."

He took five glucose tabs without my prompting and returned to the couch.

"Keep reading," he said.

Apart from that unexpected low, he felt much better than he had the day before -- until later in the afternoon when his fever spiked yet again (this time not as high -- 101.4) and his bgs rose as well:


But overnight, he didn't feel hot . . . and his sugars drifted back down.

By Sunday morning, it seemed the worst of it had passed. Though he didn't sound good and still had a miserable cough, his fever was (and still is) completely gone.

His blood sugars on Sunday, his third day since onset, looked like this:


"Amazing, Bud... I can't believe how fast you're getting through this thing."

"Mom, my immune system is beast," he said simply.

So that's Joseph. Still coughing a whole lot-- but much, much better.

Evan, however, is another story.

She's had this thing since Friday the 11th -- and is still sick.

Her fever drops to a low-grade 99-and-change for a day, and then spikes to 101-plus the next. I'd been in contact with her doctor mid-week, and then again late Friday-- after yet another fever spike.

"Sandra, you need to bring her to urgent care and get a chest x-ray. I don't like that the fever is spiking this late and her cough is worsening."

So off we went to urgent Care, while Ryan stayed home with Joseph.

"Mama, I'm scared," she says in a muffled voice through the mask they've required her to wear.

"Honey, it's all right. You'll be fine... and this won't hurt at all -- I promise."

"But it hurt last time."

"Last time?"

"When I had an x-ray and they were bending my leg on that table."

I look at her -- blanking for a moment -- and then I'm amazed that she remembers that.

After much waiting (wherein Evan and I scan the pages of her book for Waldo, Wenda and Wizard Whitebeard) she has both an exam and x-ray.

Happily, her chest is clear and her respirations are only a little rapid.

Today, Evan still has a horrendous cough -- but after 10 days with this thing, her temp is finally normal.

I'm just hoping this holds.

Well, it's here

"Mama, why don't you write on your blog anymore?"

I stop typing the press release I'm working on and look down at my girl's pale face, her dark brown and uncharacteristically watery eyes.

"Honey, I- well I've been busy with my job and you kids... and well... I don't know. Why do you ask?"

"Because I miss it."

"You miss it," I say with a smile, "but Honey, you didn't really read it."

"I did sometimes. And I liked it."

Suddenly I can see my little girl, sitting on my lap, staring at my computer screen as I type -- asking questions or laughing about the post I'm writing as the words appear one-by-one on the screen in front of us.

"I miss it too... Honey, do you want me to read you more Potter?

"Yes!" she says, then coughs loudly for several long seconds into her arm. I lean down and kiss her forehead.

Hot again.

"Sweetie, let's check your temp again first, okay?"

She's been home all week... fever and coughing.

H1N1

Her school nurse told me she's been sending 3-6 kids home a day.

And now, Joseph has it too.

He woke up this morning with a sore throat and a 100 degree fever -- exactly the same as Evan last Friday. I've got a call in to his endo.

Has anyone out there had H1N1? Anyone's child with diabetes? Did you use Tamiflu?

A Quick One Before We Leave Town

We're in the homestretch of summer vacation and it's been crazy over here.

Late last week, my external hard drive crashed... that would be the hard drive containing backups of our documents, photos and the only copies of my edited videos (files too big to store on our laptop).

Thankfully, the Geek Squad was able to recover most of my files, however, a directory containing a large number of my edited videos was lost.

I can't even tell you how much this hurts.

So let's just move on.

In the midst of the hard drive debacle, we got a call.

"Hello-- Sandra," I heard a familiar voice say.

"Zachary?"

"Yeah, um... I'm coming out for a visit... do you think I could spend a night at your house?"

"Oh, my God-- of course you can!"


For two days and one night, it was like he'd never left.



That's why when Zach's mom said they were heading out Thursday morning with friends to a huge water park, I asked:

"How would you feel if we met you guys there?"

While I didn't want to horn in on their plans, I sure as heck knew how Joseph and Zachary would feel.

"That would be terrific," Zach's mom responded.

Soooo, despite having laundry and tons of packing to do (we leave tomorrow for a road trip to the Smoky Mountains), I drove an hour away with my kids, sat astride countless inner tubes, shot down a myriad of slides with my little girl...

While my son had yet another day with his best friend.

How did diabetes figure into all this?

Well, Joseph's blood sugar plummeted to 46 by the end of his first day with Zachary-- at dusk, the two boys working on Zach's pitching, just didn't want to come in for dinner.

Ten minutes and three glucose tabs later, Joseph was 98 and chowing down on a big plate of pasta with the rest of us.

Yesterday at the water park, Joseph was disconnected from his pump the whole time. Yes, he was high as a kite and his set came out on one of the many daredevil slides he and Zach rode down together-- but we got him back in range before bedtime.

Again, I promise I'll finish the camp story (had it half written when the dang back-up drive failed) and I really, really need to tell you at least one baseball story, but you likely won't see these until after we return late next week.

On the Eve of Camp

Finally.

The piles of folded clothes that covered the dining room table are packed tightly into Joseph's large blue duffel-- along with sunscreen, bug spray, goggles, sneakers, flip flops...

Everything my boy will need for a week at camp.

And next to that duffel is a medium-sized black suitcase packed neatly with dresses, shirts, skirts and "skorts" -- along with no less than six "buddies" from Evan's vast collection of stuffed creatures. Everything she'll need for "Gramma" camp.

Yep, they're both ready.

It's not that late -- only quarter til nine -- but I'm beat. So much traveling lately, and Joseph's baseball games, and work...

I just want to sit down and breathe.

"Kids, why don't you get ready for bed? It's gonna be a long drive tomorrow and we all have to get up early."

Joseph and Evan head upstairs to change, chatting away about what they'll be doing "this time tomorrow."

That's when the phone rings.

I don't recognize the number on caller id and there's no name, so I decide not to answer it. But then, since I'm standing right there I pick it up anyway.

"Hello-- Sandy?" a woman's voice says on the other end.

"Yes... " I say, fully expecting a telemarketer-- who else would call me "Sandy"?

"I'm the program director at Joseph's diabetes camp."

My stomach drops.

And, I'm confused, because this isn't N-- the program director who has been running the camp since before Joseph started going.

"Yes?"

"We were looking over Joseph's camp forms and saw that you requested his blood glucose be checked at midnight and 2am... I wanted to clarify our protocol for putting children on the night rounds. We only check those children whose blood glucose is 80 or less before bed time."

"What? Hold on, this isn't what was done last year. I included a letter from Joseph's diabetes physician, it explains why he needs to be checked- "

"Yes, we saw the letter. That's why we're calling. With so many children coming to camp, we can't possibly do anything outside of our protocol."

I start to shake.

This can't be happening. Not the night before.

"But I spoke with the camp doctor last year. Joseph was checked every night... wait, your calling me on a Saturday night -- the NIGHT before camp -- to tell me this! This is insane!"

"I'm sorry, but- "

"I need to speak with the camp doctor."

"All right, I'll go get him."

For two long minutes, I wait-- the phone pressed so hard against my ear it hurts.

When the camp doc finally comes to the phone, he repeats almost verbatim what the program director just said.

"I don't understand-- you agreed last year. He was checked- "

"No, I think you must be mistaken. I probably had him checked the first night, but then we followed our protocol."

"But I have the logs- he was checked!" Suddenly I'm wishing I could find the logs right now, but I can't even think straight. "You met with me in his cabin. You agreed- "

"I'm sorry, but it sounds like your son might be too fragile for camp."

"What?! He is not fragile-- not at all! What are you talking about?"

"The letter from his physician states that he has 'a history of extreme glucose fluctuations overnight' and 'unexpected overnight hypoglycemia which must be detected to prevent seizure activity.'"

"But he's never had a seizure!"

"The letter asks that we treat glucoses less than 100 at midnight and 2am. I'm afraid that isn't our protocol."

"Are you saying that you don't want my son to come to camp because of something he can't help? That even though you have people doing night rounds anyway, you won't let them check my son? And you're telling me this the NIGHT BEFORE camp?"

Then, through tears I tell him what this camp means to Joseph and plead with him to reconsider-- reminding him several times that this wasn't a problem last year.

"If you can agree to follow our protocol, then there won't be a problem."

There's nothing I can do-- not this late! He has to go...

"All right," I say, wanting to fight -- but knowing that if I do, they might not let him come.

"We'll pull back his basal rates, insulin-to-carb ratios and his sensitivity factor even further. We'll make it work," I say, half to myself, as a new plan begins formulating in my brain.

Then, after nearly an hour on the phone, I hang up-- feeling more drained than I have in a very long time.

Moments later I'm leaning back against the kitchen counter, explaining everything to Ryan. "Joseph needs to know about this," I say, torn -- because camp is a place where my son has always felt safe. I don't want to take that away from him.

But he has to know.

"Bud," I say, sitting down with him on the couch, "when you go to camp, they may not check you overnight."

"What do you mean?" he asks looking confused.

"Only if your sugar is 80 or less before bed."

"But that's stupid! What if I have insulin on board and I'm falling fast?"

"Listen, we're pulling everything back. Basals, insulin-to-carb ratios... and you'll eat a snack before bed with no bolus, all right? We need to be careful about stacking... "

I pause a moment to look at his face, to make sure he's with me.

He looks calm. Confident, even.

" ... now, you're probably gonna run high overnight, and will likely wake up on the high side as well, but it's just a week... Bud, I want you to have fun and not worry, okay?"

Suddenly, he takes hold of my shoulders and looks straight into my eyes.

"Mom, it's gonna be fine. We can do this."

So the next morning we bring my boy to diabetes camp for the fifth time.

to be continued...

Coming Up for Air

Okay, so.

Joseph went to camp last week and I've got A LOT to say about it.

Some absolutely awesome, some... pretty horrendous.

But I can't write about it today because it's our first day home from Joseph's road trip with his little league All Star team. (I've got some stories about that, too.)

Yes, I know. My posting has been choppy at best. I can't promise that I'll post more regularly because I've done that before and it hasn't worked. So I'm just gonna dive in when I get the chance and the inspiration.

(Sadly, I've had plenty of the latter, not so much of the former).

Why didn't I post last week while Joseph was away -- and Evan was at "Gramma" camp -- you might ask?

Well, it was THE week-- the one and only week of the year that Ryan and I have together when neither of us are checking Joseph's bgs overnight. When we're not thinking about boluses, about carbs, when we're not taking care of our kids...

So I wasn't on the computer at all, instead riding my bike with my husband-- logging 25-37 miles a day. Going out to dinner. Seeing a movie. Just staying home.

Being a couple.

It was our "Date" camp, and it was grand.

More soon...

A Diabetes Blogger Summit

Two days ago, I was flown to Indianapolis for a meeting with nearly 30 other diabetes bloggers and online community leaders-- many of them close friends.

The vast majority I'd never met in the flesh.

Throughout the evening and one-day event I was struck by the passion, the intense commitment of these bloggers to making life better for everyone living with diabetes.

(When I wasn't fighting back tears, I was wishing my son could have been there with me.)

We were brought together by Roche Diagnostics, a pharmaceutical company and the leading manufacturer of glucose meters and test strips in the world.

What was the goal, you may ask?

Well... I'm still not entirely sure.

The meeting was called a "Social Media Summit" -- and the agenda included discussions about:

• What brought us to the social media space and what we hoped to gain from the summit;
• Conflicts with and blogger concerns about corporations in social media;
• And finally-- how bloggers and corporations can work together to both reach out and expand the diabetes online community.

Not on the agenda (but occurring, nonetheless) were heated discussions about the cost of test strips, and the need for Roche (and other pharmaceutical companies) to offer assistance to the uninsured-- points argued passionately by Chris Thomas of Diabetic Rockstar, Scott King of Diabetes Health, and Fran Carpentier, former senior editor, now diabetes blogger for PARADE.

While I had mixed emotions about coming to this event -- on the one hand I really wanted to meet everyone who came; on the other, I was more than a little wary of our hosts -- I must admit that seeing some of the human faces behind the test strips, meters and lancing devices was a good thing. Some of these people are living with diabetes themselves or have a family member with the disease. (One high-level manager I met was both a longtime type 1 diabetic and a pediatric endocrinologist.)

So yes, there are some people within Roche who truly "get it."

Further, in putting together this event, the company did indeed give us all an opportunity to make our voices heard in a powerful way.

That said, I'm still not exactly sure what Roche expected/really got from the Summit.

(Regardless, I'm certain it was more than they bargained for.)

My hope is that this event will at the very least serve as a conduit for further dialogue between the diabetes online community and the folks behind the products keeping us -- or those we love -- alive.

For some more detailed and very cool recaps of the summit, please visit the websites linked below.


(Thanks to Manny Hernandez of TuDiabetes for the photo legend)
In the photo above:

1) Riva Greenberg

2) Ginger Vieira

3) Kelly Kunik

4) Fran Carpentier

5) Calpumper

6) Kitty Castellini

7) Sandra Miller

8) Christel Marchand

9) David Edelman

10) Brandy Barnes

11) Bennet Dunlap

12) Lee Ann Thill

13) Allison Blass

14) Gina Capone

15) Jeff Hitchcock

16) Kerri Morrone

17) Manny Hernandez

18) Chris Bishop

19) Amy Tenderich

20) Kelly Close

21) Christopher Thomas

22) Scott King

23) Bernard Farrell

24) Scott Strumello

25) George Simmons

26) Scott Johnson

27) William Lee Dubois

28) David Mendosa

29) Charlie Cherry

---

A quick update on the kids:
My little girl is sick (she started throwing up yesterday), and we're scrambling to get my boy packed and ready for diabetes camp (he leaves tomorrow).

And... Joseph pitched two shutout innings this morning in his first appearance on the hill in an All-Star Tournament. (Yee-haaaa!)

Swine Flu, Part 2

We leave tomorrow for a two week visit with family back east. If at all possible, I will post from there.

In the meantime, for the sake of closure I'm sharing an entry I wrote on May 11th and just now found in a draft folder...

___________________________________________________________

I write my previous entry, hit "publish post" -- then sit back in my chair.

Thinking.

What if he gets this thing? No immunity. They keep saying those most vulnerable are young kids, the elderly and people with underlying health conditions...

He's been coughing for the last couple of days, no fever.

But still.

So I snatch up the phone and call his diabetes clinic. After a brief conversation with the answering service, I type an email to Joseph's endocrinologist telling her about Joseph's classmate.

Twenty minutes later, I receive the following message from Joseph's doc:

Sandra,

If Joseph gets a runny or congested nose or fever, or a cough, he should go in THAT DAY to be swabbed for H1N1 and started on an antiviral. Treating influenza requires starting meds within 3 days of symptoms. The problem with H1N1 is that no one has any kind of immunity to it, so it could lead to weeks of high glucoses and/or ketones if untreated.

Hmmm. It's just a cold. I know it's just a cold... but what if-

Just then, the front door bangs open-- and I nearly jump out of my chair.

"Hey, Mom- can I go on the computer?"

"What? Oh... sure, Bud."

"Mom-- can I have a snack?" Evan chimes in.

"Okay, Honey. Joseph can you help your sister find a snack? String cheese, an apple... there's some bananas... guys, I need to go downstairs and make a quick phone call.

Minutes later I'm talking to a nurse at Joseph's pediatric clinic.

"Can you get here in the next 15 minutes?"

"Sure, we're only five minutes away."

"Great, and he'll have to put on a mask at check in."

"Oh."

"Bud-- we need to get you checked for swine flu," I announce, returning to the kitchen.

Joseph looks up from the laptop, confused.

"Honey, it's just a precaution. Dr. C wants you to get checked. You may have been exposed, and if you get this thing you could have some pretty wild blood sugars."

So I pack both kids, and off we go...

True to their word, Joseph is wearing a mask the instant we identify ourselves. The two of us are then quickly escorted to a small exam room, while Evan remains in the waiting area immersed in a book.

"Mom, do you think they'll let me keep the mask?" Joseph asks once we're alone. "I could make a YouTube video about this."

"Sure, Bud," I say, head shaking.

There's a light knock at the door, then a lovely young nurse steps into the room -- also wearing a mask -- and it's not long before Joseph is cracking plague jokes. She thinks he's hilarious.

Me? Not so much.

Moments later a doctor walks in. Not Joseph's regular pediatrician, but rather a very small man with dark hair, eyeglasses and -- unlike the nurse -- no mask.

"What seems to be the problem?" he asks.

I fill him in.

"Well, this is all hysteria," he says in an angry voice.

"Excuse me?"

"So much overreacting- "

"But I just explained that my son's endocrinologist advised us to come in and have him swabbed."

"Still, much too aggressive... "

And now I'm angry.

"That may be so," I begin -- struggling to keep my voice steady -- "but this was the course prescribed by my son's diabetes physician."

"All right. We'll swab him."

Then he gets up out of his chair, grabs Joseph's chart and stalks out of the room.

When he returns, the doctor instructs Joseph to sit on the exam table, sets a vial full of clear liquid down on the table next to him, and holds out what looks like an extra long Q-tip.

"Now hold still. This is just going to make you feel like you're going to sneeze."

He then takes hold of the back of Joseph's head and proceeds to ram the swab up one of my son's nostrils-- so hard that Joseph cries out, begins to struggle, and then falls backward on the table while the doctor holds him down and continues "swabbing."

"Whaat? Wait!" I barely manage to get out before the doctor releases my son.

When Joseph sits back up, blood is streaming out of his nose.

"Now I have to get another one!" The doctor growls.

"What?!" Joseph and I say at once.

"You spilled the vial!" On the exam table beside Joseph is a wet spot where the vial once stood.

Without saying another word, the doctor storms out of the room.

"Mom, I hate that guy! That was terrible! This really hurts!"

I'm so angry I could spit.

Before we leave, the doctor returns to tell us that he has no idea when we will get test results.

"Until you know, he must be quarantined."

And so we wait the whole weekend for test results which (thankfully) come back negative.

___________________________________________________________

Since writing the above entry early last month, I haven't thought much about swine flu.

Until another death is reported. And I read the "but the victim had an underlying health condition" tacked on to the end of the announcement.

Then it's like another little poke in the gut.

Did this person have diabetes?

For a moment I'm gripped with fear.

(It doesn't help that Wisconsin leads the nation in confirmed cases.)

But then, I move on.

Swine Flu

On my way to pick up Joseph, I can't help smiling.

The sun is bright, the air warm, and it's Friday.

Ice cream, that's all this day needs.

Just as my boy climbs in the car, I turn and flash him a grin.

"How 'bout we pick up Evan and then go for some ice cream?"

"That'd be great," Joseph says.

And then he turns and looks out the window.

"What's up, Bud? Anything happen at school today?"

"A kid got swine flu."

"What?"

"Swine flu."

"Wait a minute... is it confirmed?"

"Yup."

"Are you sure, because it takes ti- "

"Mom, they talked to us about it. And there's a note in my backpack. Kids were freaking out. Some parents even showed up to take their kids home."

"Bud, do you know the kid-- the one who got the flu?

"Yeah, he's not in any of my classes, but he's in my grade."

"Hmmm... well, are they closing the school?"

"Nope."

"Really? Huh."

Neither of us says anything for about a minute.

"Hey, Bud-- are you scared?"

"Heck, no. You said I shouldn't be, and we heard that doctor on the radio last week giving all the reasons why we shouldn't panic. No, I'm not scared. I'm just a little mad."

"Why?"

"Because they didn't close the school."

And now he's the one grinning.

So we pick up Evan, have some ice cream and then make our way home. We're not in the door five minutes before Joseph and Evan head outside to play baseball with a couple of friends.

While I sit inside writing this post.

Wondering if I should be scared.

My First Vlog...

... and could the freeze-frame look any goofier?




Will write a post soon... really.

Finally

Have you ever lost touch with a close friend?

Ever let so much time go by without talking that you just didn't know where to begin?

And even when something truly wonderful happens, your shame at having let this friend fall so far out of your life prevents you from sharing it with them.

Well, that's how I've been feeling for quite a while now.

About this blog-- and about all of you.

So I'm just gonna jump in where I left off and see what happens...

Joseph loves the Ping-- we all do.

His new pump and meter arrived over the Christmas break and turned out to be quite the gift.

"Mom, look at this screen!" my boy exclaimed after we powered up the pump, "it's... beautiful."

I had to agree. Definitely more readable than its predecessor.

In addition to the fabulous color screen, I love that we can use his meter to see how much insulin Joseph has on board from another room. And as I mentioned in my previous post, giving him a corrective dose of insulin while he sleeps is sooo much easier now.

So yeah, we're happy.

Now.

This is not to say that the Ping is perfect...

When we opened the box and pulled out the pump, I noticed immediately that the Ping is considerably bigger than Joseph's IR 1200. (Bear in mind, one of the things that drew us to Animas in the first place was the small size of their pump. So this was a surprise.)

Also, I was looking forward to Joseph having the food database in the pump.

You see, shortly after we purchased his IR 1200 four years ago, Animas released the IR 1250--the first of their pumps to include that database.

Sadly, the Ping only has the food database on the meter-- which seems kind of nutty (at least for us) as we don't send the Ping's expensive, somewhat large meter to school with Joseph (where I think he'd most benefit from having access to that food database).

Ah well.

In other news, Evan lost her first tooth!

AND I got a job!

Which is part of the reason I've been MIA.

It's part time (20-30 hours a week) extremely flexible-- and dang cool.

I'll tell you more about it soon.

One last thing.

Joseph is just shy of my height and closing fast... which is sort of freaking me out.