It's D-Blog Day!

The topic this year is: 6 things you want people to know about diabetes. I could fill volumes with what I would like the people in Noah's life to know about his disease, so breaking it down to 6 is a bit of a challenge, but here goes.

1. Type 1 diabetes is a tough disease to manage. From one day to the next, blood glucose can fluctuate with seemingly no explanation. It could be something as simple as stressing over a math test, or eating breakfast a half hour later than usual that can send blood sugars roaming out of the comfort zone and into the danger zone. Chasing a high with a correction bolus, water and exercise sometimes just plain doesn't do the trick. The same goes for pesky lows sometimes, and it can be frustrating knowing that through all your best efforts, diabetes is essentially blowing raspberries at you behind your back.

2. A good thing that came out of this journey is the overabundance of support that's available within the diabetes OC. As the mom of a newly diagnosed little boy 5 years ago, I was pretty much lost in a new world I didn't know how to navigate. My husband and I felt isolated not knowing anyone with whom we could identify. What we needed was someone to ease our fears and let us know that we weren't totally screwing things up. We have received so much help from so many people over the years with everything from recipes, to 504 plan advice. That kind of support is priceless and we are truly grateful.

3. Insulin is not a cure. I saw this on a t-shirt once, and it has since become my mantra any time an opportunity comes to raise funds for research, or to simply answer a question for someone who wants to know more about diabetes. So much more can and will be done in the way of research. For now, insulin is what is available, and we look so forward to the day we can have a more permanent solution. I'm hopeful it will happen in Noah's lifetime.

4. Insulin is the thing that's keeping my son alive.
I can't stress this enough to the insurance company who is refusing to allow us more than 1 bottle per month. When that vial gets low, I get mad and resentful at the fact that insurance companies will practically give away other drugs that to me are frivolous (Viagra, Cialis) and non life-sustaining, but they give me crap about how much insulin Noah is going through. It's not right.

5. We're lucky to have such a constant emphasis on Noah's health and diet. I always say he's one of the healthiest people I know. We have learned how to help him make good food choices, and he has such a healthy attitude towards what he eats. We have always steered him towards trying new things, while at the same time never making him feel like any food is "off limits". He gets to have cake at birthdays and candy at Halloween just like any other kid, but he knows that it's because he makes the right choices all the other days that creates that perfect balance.

6. Type 1 diabetes is a bully and a sore loser. It tries to be all badass, throwing a high blood glucose at Noah right before bed, or surprising him with a nasty low the minute he sits down for a quiz at school. Noah is stronger than diabetes, and always manages to get up in it's face, ,bring his A game, and win in the end. What can I say? The kid is good.

Imagine doing everything you're told. You stick to the rules, learn the tricks, and jump through all the hoops. You do this every second of every day. You do this out of fear. You do it because you are a parent and you have to. You do it out of love.

Imagine doing all that, and watching your most precious blessing, the thing you've been fighting for, and caring for, and loving so dearly slip away.

I don't know them, this family that must feel like their world has come crashing down on them. The recent death of their 13 year old child caused by a rare syndrome due to type 1 diabetes is something that can't be explained away. There is nothing and no one to set blame to. My heart is breaking for Eilish and her family- prayer feels so painfully inadequate, but I do it anyway.

It's cutting right into my mother's heart. All I can do is think of Noah and my God, how will I sleep tonight?

I'm sure, along with so many others, I won't.

site change

Last Night at our house...

Me: assume the position, kiddo. Which side?
Noah: the right, this time.
Me: you ready?
Noah: not yet...(deep breaths)



Me: ready now?


Noah: hold on...(a few more deep breaths)...okay. OW!
Me: honey, I'm sorry. (eyes filling up) I'm sorry you have to always do this crap.
Noah: It's okay. I have to do it because diabetes just came and got me.

Feeling the pinch

Parenting a child who has type 1 comes with all kinds of challenges. A tough one is identifying with how a high or a low must feel to Noah, because neither me or my husband have diabetes. Noah experiences some symptoms of a low blood sugar that I can see readily : shaky hands and pale, sweaty face. How he feels on the inside is a bit of a mystery to me,and although he's tried to describe the "cruddy feeling" that washes over him, it's not something I can really relate to.

Today, I got to experience a small taste of that cruddy feeling for myself. Since July, I've been seeing a nutritionist to get my weight under control. I've been doing pretty good, too. I've lost 30 lbs. so far, and have about 20 more to go before I reach my goal. Because of the weight loss, my body is a little out of whack- I used to always be hungry and I was told that it was because I constantly snacked and grazed during the day, keeping my blood glucose on the higher end of the scpectrum.

Now that I eat normally, my body no longer craves the constant flow of food, and I'm no longer always feeling hungry to keep up with that demand.
The problem is, even though I'm eating my calories for the day, I don't feel hungry enough to snack between meals at all. That caused a problem for me early this afternoon, right before lunch. I felt shaky and pretty cruddy. I couldn't think straight and became panicky. I wondered out loud; "If this is only half of what a low feels like, it SO sucks".

I grabbed a clementine off the counter, scarfed it and sat- staring at the clock on the microwave a full ten minutes.

And then I did something out of curiosity. I went to the D-Drawer and grabbed Noah's spare test kit and used it. 82 mg/dl.

I guess it's not bad for an adult, right? But all I can think of is that reading came after I ate the clementine, so I wonder what it was before?
I also can't get that feeling of confusion and anxiety out of my head. It was unpleasant and uncomfortable. I imagine my blood sugar wasn't all that low to begin with, but now I see a tiny bit how Noah (or anyone else with diabetes, for that matter) feels when a low starts. I'm amazed at how anyone going through a low can even function enough to go through the motions of a blood glucose test, let alone rummage around for something to treat the low afterward.

I'm also amazed at the fact that most type 1's test 10 times a day, because my pinky finger still hurts from the lancet. (yep, I'm a baby) I don't know how you guys all do it...all day...every day. Yeah, I got a small taste of what it's like, and it made a big impact.

Health care plan woes.

My husband's employer brought the hammer down and informed us that they are dropping Tufts Health Care...which of course is the insurance we have. It's also the insurance we love. The coverage has been great- we've never had to pay for an insulin pump, our copays are low, and I actually like talking to the helpful staff at member services (God knows they've heard from me enough over the years).
Now comes the daunting task of reviewing insurance plans. I have 3 choices- all plans offered by Blue Cross, Blue Shield.

A side note: Our dissatisfaction with BCBS is the reason we switched to Tufts in the first place. BCBS sent an outrageous bill totaling upwards of $10,000 to us after the birth of Noah, claiming we had to pay out of pocket for a c-section and 4 day hospital stay. The reason? They had no physical proof of my admittance to the hospital. Seriously? Hey, this baby here isn't physical proof enough for ya? True story.

Ok, so needless to say, my expectations that any of our options is going to offer us a vast improvement over what we currently have are lacking. There's also this scary feeling that I'll miss something, and be stuck with a plan that could possibly hurt Noah health-wise. I've heard so many stories of people with type 1 diabetes fighting with their insurance companies over coverage. What's going to happen when Noah's doctor wants to try a CGM and insurance says "no"? I wouldn't back down from a "no", but I'd rather not have to fight over it in the first place.
I understand and appreciate that we are VERY lucky to have any coverage at all. I want the best possible everything for him, and honestly, I don't want to screw this up.

Talk. Listen. Repeat.

Some people like a challenge. It makes them work harder- try to prove something to themselves or others. I guess I fall into that category most of the time, but recently it's been hard for me to get through the D stuff with a smile on my face and my usual unwavering fighting spirit. The numbers make me angry. The cost worries me. I have lost sleep over the minute details of diabetes too many nights to count.

It's no wonder that the needs of the one person in the center of all this- Noah - the most important person, in fact, get lost in the shuffle. My mind is constantly on numbers, strips, ratios, research, money...
Yes, all that is important and won't go away, but I realized recently that paying so much attention to those details has taken my focus away from helping Noah with the challenges he faces every day. I'm so used to being a cheerleader- encouraging Noah to go with the flow and, doing the whole, "we're not afraid of dumb old type 1 !" thing , that I fail to see that he might be struggling in his own way.

It's time to stop, keep quiet and really listen to Noah without jumping up all full of piss and vinegar wanting to conquer his fears. I might be surprised to find he doesn't want a cheerleader...just a mom.

Today's My Birthday

Guess what I'll be wishing for when I blow out the candles...

Words make a difference.

Noah was lucky to receive a TON of mail from us and the rest of our family while he was at camp. He was eager to share it with us, and so as we helped him unpack I paused to read each one. A cute card in particular (from a very close family member) caught my eye and I read the short message of encouragement once...twice...a third time. I couldn't believe what I was reading, as my eyes repeatedly ran across the scrawl. Amid the uplifting message, one phrase had my maternal instinct rising up in a fireball of fury.

Quoting from card: "It must be nice to know you're not the only one with this problem."

Problem. Problem. Really?

Not having enough toll money is a problem. Being stuck on the elliptical machine next to overly sweaty guy is a problem. Lindsay Lohan's appeal and fame is a problem...

This very close family member has been consistently lacking in any desire to learn more about Type 1 from the start, (no matter how many times we explain to her that Noah is on no dietary restrictions, she always plays Food Cop with us) so I shouldn't be all that surprised or expect anything more than ignorance on her part, but this message was written to Noah from someone he's supposed to trust. He's 11. He has Type 1 diabetes, and will continue to have Type 1 Diabetes always. He knows this. He doesn't need negativity and to be told what he's got is a problem.

Happy Camper

Noah busting a move at Dance Night

On Friday, I hopped in the car with Jon and my mom to fetch Noah from his 2 week stint at Camp Joslin. During his time away, we received just one letter written on his third day, stating that he didn't think camp was for him, and that he was very homesick. Oh boy. I tried not to overreact upon reading that, but every day of camp that went by, I anticipated a phone call from Joslin, and was releived at the end of the day when no such call came.
It didn't help that we missed him like crazy, too!

When we arrived at camp, we wandered from the dining hall to the cabin, looking for Noah. He wasn't sitting there looking all forlorn, waiting with his luggage, like I had imagined. We had to have him paged over the loudspeaker, and as he rounded the corner of the main office I could see the sheer happiness on his face and I knew the two weeks had become a turning point for him and his life as a kid with type 1.

There were hugs, we met a couple of his new friends, and heard a ton of stories
- he even lifted his shirt to show us the new site for his infusion set - something I could never get him to do at home. Through it all, I noticed a new confidence in Noah that had not been there before. He loved camp, and has already started talking about next summer.

Now that we're home and the normalcy has returned to our routine, that happy confidence is still abundant in Noah. So much so, that when it came time to do his site change, he surprised me by taking the reigns and doing it all himself. Drawing up the insulin, tapping out the bubbles, loading the pump, and doing the insertion like a pro.

I'll never be able to put into words the gratitude I feel towards the amazing doctors, nurses, staff and councilors at Camp Joslin. Just like Noah, I can't wait till next summer.

No Rain

Noah is now a camper. Diabetes camp, to be specific. Being his first time, we had no idea what to expect, but it's been the talk at the dinner table here at our house for months now. Wondering what the cabins will be like, and where all the other kids will be from? Will the food be good? What about the weather? Oh, the weather. The darn rain that has been plaguing us here in New England for the better part of a month straight put all the other worries to shame. Well, all the crossing of fingers must have paid off, because Sunday when we drove down to the camp, it was a gloriously sunny, warm, and DRY day.

No Rain.

We ambled up to the office where we could see counselors and kids milling around...some with pumps and tubing precariously hanging out in the breeze...some not. I looked at Noah, and saw his smile of understanding and recognition. Even as we went through the check in process, and he got to know his cabin mates, you could the bonds of familiarity forming.

After saying good-bye about 100 times, and taking the long drive home, my husband and I sat in our too quiet house wondering if Noah was doing ok. We recapped the day, and talked about our observations. My husband put it perfectly when he said this to me:

"Seeing Noah today at camp, reminded me of that Blind Melon video. Remember the one with the little bee girl? She danced and got laughed at...went all over the place trying to find where she fit in. Finally she found other bees doing their dance, and she was so happy. That's kind of like Noah today at camp."

Noah has found his bees.

Strange Coincidence or Something More?

The Boston Channel

I have no way to embed this, so bear with me and click on the link above to view the video.

I saw this story on my local news last night, and I'm not surprised to learn about the large clusters of Type 1 diabetes in certain areas at all. I for one, don't think it's a coincidence that these kids are grouped together, and I absolutely believe that something in their environment has been the " type 1 trigger." What that is could certainly be different for Noah than for these kids, but I feel in my gut that it's always caused by something...it doesn't just happen out of nowhere. I'd love to know everyone's thoughts on this.

D-boogeyman

Noah told me he had a dream about someone coming into his room and setting his pump to give him a bunch of insulin. In the dream, he tested his blood sugar and watched as the numbers crept lower, and lower, until the last number he saw was a 5.

I asked him, "then what happened"? He replied, "I died".

I have to admit, it freaked me out so much that a chill ran through me. I thought to myself, "where the heck is this coming from, and what brought it on?" I asked him if he's worried about going low in the night, and maybe that's why he dreamed that, but he said "nah...you guys always protect me from everything".

Well, not everything, but we try.

One Day.

Noah at Disney World, 2005

I had a dream last night that we were at Disney, and Noah didn't have his pump. Jon and I were frantic. We emptied the suitcases, and looked all over the hotel room, and Noah kept saying "I don't need it today. Today, we're in Disney, and there's no diabetes here."

Pretty weird dream, considering the fact that our family vacation in Disney in 2005, is the time I think about the most as our "BD time"(Before Diabetes). It was before the biggest change in our lives to date, and I think back to that time often. We were so blissfully unaware of what was about to hit us.

I've always said I wanted one of those dream interpretation books, so I can find the hidden meaning behind dreams. The meaning behind this one, I know is a no- brainer.

I want one more BD day.

If you could have one day with no diabetes- that's 24 hours free from testing, boluses, counting carbs, feeling the dizzying lows and headach-ey highs, tubing and syringes- how would you spend your time that day? What would you do? What would you eat? Would you go anywhere special? How do you think it would feel?

Abandon Ship?

This subject has come up since day one, when the pediatrician sent us into Boston's Massachusetts General Hospital, we've been asked a million times since that day..."why not Joslin, aren't they the best"? My response is always the same "we went where they told us".

Sounds lame, but we were newbies in the world of type 1 diabetes, and being led on a medical leash was actually a welcome thing in a life that felt like it was spiraling out of control at that particular time 3 short years ago. MGH has been good to us. They taught us a lot. Got us through the "boot camp" phase of parenting and clinical care of a newly diagnosed type 1 child. We love the staff there, they are always available to call you back if there's a problem, and we are incredibly blessed and lucky in geography to be a stone's throw from some of the best medical facilities in the entire country. (wait for the big "but")...

BUT, It's an adjustment when the doctor we've been working with, and getting to know is suddenly gone. Being a teaching program, Noah's on his 4th doctor in 3 years. This past Friday, it happened again. When Noah's name was called, it was by yet another "new" doctor. Introductions and small talk were made as we snaked through the maze of hallways on our way to the exam room. Jon, Noah and I took a collective deep breath and entered .

She was nice enough, I'll give her that. But zero bedside manner, and to me- especially when the doctor is working with children- is a huge problem. As she rifled through tons of paperwork, looking for the one with Noah's pump history printed out on it, I could feel Jon tense up as he sat beside me. She positively grilled us, which is fine- we got a weird feeling from the manner with which it was done. Later, over lunch Jon and I would discuss how we felt like we were in trouble, sitting in the Principal's office , afraid to say the wrong thing that would surely result in detention.

I dunno, it just felt bad and uncomfortable. And they didn't DO anything. I feel like when we speak about certain issues or concerns, there's no feedback. It's frustrating because even though we've been in this life for three years,we know there's always something new to learn. That being said, don't you think some new information, or helpful advice would be offered up from time to time? yeah, I thought so too, but it doesn't happen there. It's situations like Friday, and the switching of doctors over the years that have us wondering if a change from MGH to Joslin might do us some good.

I've always been the kind of person that hates to rock the boat, I don't ever want to offend anyone, but this is my kid's health- heck, his LIFE, at stake here. Why not expect the best? Why not leave no diabetes stone unturned? As parents, I feel we shouldn't allow ourselves to get complacent. We're going to get the wheels in motion for the long overdue switch to Joslin. I'd welcome any advice on what to expect from those of you who have had to break ties with a doctor, or switched from one hospital to another.

On a side note, we had a really great time in Boston after the appointment was over. We did the Boston Duck Tours. It's one of those touristy things you have to do at least once. It was the perfect day for it, and it was educational and fun. Noah even got to steer the duck boat!

The reality of it.

Running away from the whole diabetes thing seems so appealing as of late. I'm sure anyone that's been affected by diabetes in it's many forms can commiserate with me. At around 4:30 the other morning, Noah crawled into bed with us, feeling low. Normally, I don't get worried when he's low- we just go through the motions of testing, juicing and re-checking in a robotic sort of way.

This time though, I could hear a whisper of fear in Noah's sleepy voice as my husband tested his blood glucose (it was tough even getting any blood...his fingers were so cold that morning) first once, only to get an error message, and then again. Not one to usually complain, Noah let down his guard down, and quietly exhaled, "I hate pricking my fingers"...

I hugged him close, and reassured him that it's okay to feel that way from time to time, and that we're so proud of him for putting up with all that he does every day.

Noah's frustration over that morning's testing didn't stay with him for long. He followed through with his day with his usual exuberance, and happiness that I love so much about him, but for me, that sinking sick feeling of not being able to "fix" my child wouldn't stop it's nagging. How I wish I could chase diabetes away, protect him from it, or take it on as my own. He never gets a break. His fingers and pump sites always hurt. He constantly has to plan, and put aside the spontaneity of youth. It worries me when the cracks in Noah's diabetes armor start to show. Even though it's been 3 years and counting, I still feel like like a diabetes newbie, and I don't always know the right things to say or do when it comes to helping him navigate life with d.

How do you push through the rough times?

Make your own!

(click picture to make it bigger)
Wordle. Go there and be creative.

Yesterday at CVS

Noah animatedly bounces ahead of me, the Tigger to my Pooh-Bear. "Mom, I need mouthwash", he says, brightly.

He grabs his brand as my hands are already full with a few womanly necessities (tampons?- check! razor blades?- TEN BUCKS!!).

Bounding ever further away, he rounds the corner by the pharmacy and stops at the display of the varied blood glucose meters on the shelf and pokes at the buttons.

I finally catch up, still grumbling to myself about the outrageous cost of personal hygiene products, and say to Noah jokingly, "looking to trade up"? We both laugh at our inside D-joke, as a man that was waiting nearby for his prescription interjects,"hey buddy- those aren't Game Boys" (chuckle, chuckle).

I saw a flash of red, and instantly calmed my instinct to snap, "thank you, but he knows that all too well". I smiled and bit my tongue.

Without missing a beat, Noah answered him with, "those are blood glucose monitors, and I'm type 1 diabetic- I have an insulin pump."

The man smiled kindly at Noah and replied "you are very lucky". (chuckle, chuckle again)

I honestly don't know why, but hearing him say that enraged me. LUCKY?! I wanted to scream, "sure, buddy!! If you think lucky is a fucking busted pancreas out of the blue at age six , lancing your fingers until they bleed 10 times a day, having to be woken out of a sound sleep to choke down a juice box, shots, long needles inserted into your ass for a site change every 2 days, cutting activities and recess and sleep -overs short because of site problems and crazy blood sugars, feeling like you're so different from everyone else even though everyone tells you you're not but you're 10 years old and no dummy, yeah if that's lucky, then he's the diabetic with the pot o' gold at the end of the fucking rainbow."

Instead, with my eyes full and shimmering in the fluorescence of CVS, I smiled in return and lied, "yes, he's very lucky"

Is Barney in charge, here?

We all love the Deltec Cozmo pump. It's super easy to use, and making adjustments is as simple as programming say, a cell phone.

In 26 months since the Florida Incident, we've had zero problems with the pump, until the other day Jon was doing a site change, and noticed a crack in the pump casing. It hasn't affected the way the pump works or anything, but we don't disconnect Noah for swimming, or the beach and that crack would let water in for sure.
I made the call to Smiths Medical, and arranged to have a replacement pump in slate grey sent here next day air.
It arrived yesterday and you would have thought Santa came early! Noah hopped around the kitchen while I undid the tape on the box to reveal...

A purple pump. wah-wah-waaaah.

I had to laugh, because Noah looked so comically offended. His face was a priceless mix of confusion and dibelief that the Cozmo people had overlooked the fact this pump was meant for a macho boy of 10. Even when I called customer service, the nice woman I spoke to chuckled, and said, "oh no, he got the "Barney Purple one"!

Much to Noah's relief, a new pump in a color more suitable to him is on it's way.

snapshot of a recent morning

Noah got up early the other morning, eager to go to day camp. He hopped up into "his" chair at the breakfast counter. I made him his waffles, and cut up some fruit while he tested.

Like an old guy at bingo, he called out the number: "57"! and then, softly...

"I'm sorry".

"Whoa, dude- never, EVER apologize for a blood sugar, you got that?" I leveled my gaze at him, the way only moms know how to do, to emphasize the seriousness of my tone.

I went on, "unless you've been sneaking Nerds, and Everlasting Gobstoppers, washing it all down with a Wonka Bar, you do not have anything to be sorry about, ok"?

"Ok, mom" he chirped, as I plunked down his waffles.

It occurred to me that he's so eager to please, even with something he (or we) have such insignificant control over. Blood sugar does whatever the hell it wants, even in the best of circumstances. It stung to hear his apology. I hope I set his thinking straight. I hate the thought of him feeling like it's his fault.

Frozen with fear.

My way home from the gym takes me through the center of town, past Noah's school. Every day, as I drive by, I say a little prayer for a good day for my son. I think about him and hope he's doing OK. Like the movie Groundhog Day, the routine doesn't change. I go home the same way, see the same familiar homes, and make the same wish. Every day.

Today, it was the lights of the ambulance I saw through the rain, as I made my way up the hill towards the school. As it sped toward me, I pulled over and at once my shaking hand went to my gym bag to fish out my cell. My mind was reeling.

It was coming from the direction of school.

Oh God, please don't let it be Noah.

Where's that damn phone.

My searching hand found it's target. I hit the button on the front of my LG to see the familiar picture, and no messages. For good measure I flipped it open and called my home voice mail too. Empty. Thank you, God.

I was completely pulled off the road by now. I put the car in park and wept with my forehead on the steering wheel. The feeling of helplessness and panic that overcame me when I saw those lights was replaced by relief. After a minute, I lifted my head and saw I had pulled over right in front of Noah's school.

I said a little prayer for a good day for my son, and drove home.