Does Healthcare Ever Cross Your Mind?

Ah…the healthcare “debate.” When I think of debates, I envision civil, enlightened discussions where many facets of an issue are smartly discussed. Maybe over a Sam Adams with a toast to our founding fathers. What’s going on right now is more of a Health Care Town Hall Cage Match between crazy people and gassy-looking legislators. But I digress from my real point…

I’m always a fan of taking a particular thought that just pops into my head and throwing it out there for discussion. I may be wrong and my logic might be flawed or inconsistent with my typical philosophy. Oh well.

Honestly, in this case, the subject just makes my head hurt so much that there’s only so much deep thought I can give it. Here’s the deal: We use public funds, both federal and state, to protect our borders (military) and protect our cities and property (police and fire departments), right? And we are generally mandated to carry insurance on our vehicles for the monetary protection of the banks (unless your car is paid off) and the general public we may run over, right?

But my daughter’s life – for the rest of her life – is far more endangered by a lack of access to affordable healthcare and medicine than she is endangered by the statistical likelihood of a house fire.

We use taxes for fire departments that provide physical protection for our population at large. Please tell me how healthcare is different? Frankly, I’d rather know with an absolute guarantee that she’ll have access to exactly the kind of diabetes care she receives today for the rest of her life and take my chances with St. Catherine, smoke detectors and a water hose.

I should be more meek

I really prefer fun and light hearted. It’s so much easier for everybody. But something has come up today and I have to turn to my dark side, even though there are so many good people out there (with very eloquent writing skills) who want to help save us all, especially from our misguided moral positions. Must be that damned Friday the 13th.

So here is an open letter to the small handful of nice folks commenting on a few blogs today, decrying democratic strategist (you know, of course he’s a democrat!) Joe Trippi’s statement that he and the 23+ million Americans with diabetes are thrilled with the lifting of the stem cell research restrictions.

I know you’ll step away from the cure when it’s discovered. Of course, no one will take down names or refuse you or your children the opportunity for treatment, because that would be wrong. We’ll just rely on your ability to stick to your very clear and steadfast principles and do what’s right. Show the rest of us how it’s done.

I'm envious. Life must be so easy when you know you’re on the path to righteousness. Let me ask, though, so I’m clear on the amazing extent of your morally victorious position: how often do you visit murderers and rapists in prison to spread the Good Word and provide comfort? Or provide a meal for that dirty panhandler with the cardboard sign at the busiest intersection in town? Or go to the seedy side of downtown late at night and distribute warm coats to the prostitutes? I know you are all following these corporal works of mercy and setting the best possible example for the rest of us, many of us your fellow Parishoners, for whom things aren’t so crystal.

I sure hope I can be forgiven, because I want so very desperately to see a cure for my little girl. Wow – apparently enough to condone the “killing” of another “child” though gosh, it sure doesn’t feel that way in my heart of hearts. Please pray for me. I know 100% I’ll have to pray for forgiveness for today’s display of snarkiness and anger. But I will also pray that you never have to tell your child they must endure the life sentence of diabetes.

Mama's a Pack Rat

I have a new way to feed my compulsive stockpiling, which extends to winter gloves, toilet paper and Swiffer refills, Eggos, and throw rugs, among other items: the laying in of diabetes supplies. We are insanely lucky to have a great insurance company - one who sees the upside in allowing testing up to 10+ times a day and provides enough needle tips to allow multiple corrections beyond the prescribed 4 shots a day. It means we have the all the tools and that keeping blood sugars in just the right range is somewhat realistic.

But make no mistake - I religiously make a note on the calendar and call for refills the first possible day they'll be approved. Here and there, I've managed to build up a little arsenal of leftovers in my kitchen cabinet and fridge door. Sometimes just looking at the inventory makes me feel like I have the upper hand.

Golfers on the Juice?

I have two rather obsessive thoughts lately. One is whether or not a change in juice drinking habits could signal Type 1 or DKA. My daughter went from never drinking juice to specifically insisting that I buy it and drinking a up to a 1/2 gallon or more in a single day in the couple of weeks leading to her diagnosis. She specifically wanted juice, not necessarily water. This article caught my attention because Ray Allen's baby was also specifically asking for juice and it wasn't typical. I've heard this anecdote several different times. I wonder if it is truly a warning sign, in addition to general thirst. Warning signs are so important and maybe a caregiver seeing "one more" on the list would be prompted to quicker action.

The second quest for information was also promted by the article. The concept of a diabetes cluster totally freaks me out and yet does not seem implausible. If there really is an environmental trigger that sets off the latent genetic/auto-immune reaction, it stands to reason that it could affect multiple people in a small geography. I'm intensely looking for information on golf course proximity, as we lived for 2 years not more than 50 yards from a 15th hole and my daughter frequently played on the course at dusk. Any ideas out there?

Amazing Grace

My company is embracing all forms of social media. So keeping an eye on Twitter along with email is not a crime. It’s great to see in real time what is interesting to industry analysts, journalists, and all-around technologists and have a new way to connect with them. And of course, I also follow a few in the online diabetes crowd. Six Until Me has been my number one go-to blog for smart, funny diabetes commentary with some real life (and New England life at that!) thrown in and her Twitter chat is equally entertaining and informative.

Today via SUM, I notice a fellow Twitter-er and PR Mom is going through the shock of her nine year old's Type 1 diabetes diagnosis. And while I don't know her or have any connection to her family, I honestly just feel overwhelmed with emotion reading her update about giving the first insulin injection.

When I look back and think about that one awful day and recall hearing Reagan's diagnosis, I see what a fog I was in then and for weeks afterward. In fact, it is very much the same emotional reaction that I had to 9/11 - just a numb nod of the head and a sense that I understood the impact, when in fact I had no idea how hard it would hit later.

So I can't offer any brilliant advice - practical or otherwise. But I will offer that a child's strength and courage are amazing and one can find all they need to go on right there.

Day by Day.....by Day by Day

Three new things we learned today. Or last Monday, to be exact.

To increase the Levemir - by 3 units. Seems like a huge jump, but it has made a big difference.

To inject Novolog prior to eating. OK - who knew? Maybe we missed this during the hospital instruction or perhaps it was inferred or maybe it is a law of the universe and clear to everyone that only idiots would calculate the carbs and dose after the meal. Anyway, this is apparently a key to tighter glucose control and I'm a little torqued that we somehow missed this for almost 2 years. Anyway, yes - this works much better, too.

My kids are wicked smart. That does not mean that just because they can perfectly understand what I tell them or teach them that they need maximum knowledge. In trying to teach Miss R about insulin resistance or the need to care for her feet, I am putting too much on a fragile 11 year old psyche. Our Joslin counselor said, "I think you have to look at the big picture, but she's not ready for that. She only needs to be thinking about how to manage her most recent blood check." Schooled. And thank goodness.

Don't Drink and Bake

I worry that I worry too much. Seriously - even before the Type 1 dx, I drove my self right up to the sanity city limits with scenarios ranging from the terrifying to the ridonculous. Of course now I just have new material to work with.

Here's my issue. When my husband is out of town for work, the frenzy of one adult overseeing two kids and all that entails leaves me longing for a little evening cocktail. But what if I suddenly need to go somewhere? Pharmacy, ER - or what if she calls me to help with a low and I'm sleeping just a wee bit too soundly to hear on the first summons?

Since one 5 oz. nip is my usual limit - it's not like we're knocking back a bottle of Jack on a good night - I sense that this behavior might go past responsible to kinda silly.

Boys DO Make Passes at Girls Who Wear Glasses

If Sarah Palin has contributed in any measurable way to our society, it has been to prove that chicks in glasses are hot. Well, what a time to be a kid, eh?

My daughter finally scored the reading glasses she has wanted so badly. The trip to the eye doctor was met with the same manic enthusiasm as a school holiday. She spent a crazy amount of time selecting the the perfect pair of kid-size frames with Easy Twist technology. And where else but the optometrist can a tween try on Versace, Dolce & Gabbana, and Dior?

My story was the opposite - a long-term disaster. Boy-crazy at an early age, I was also precociously vain. (Looking back, maybe my parents were aware of this and bribed the doctor, because what a scary combination.) In any case, both those predispositions ran head-on into Third Grade Glasses and drama the likes of which I have only witnessed, um.....with my daughter.

No way on the highway was Loren - the short, dark & handsome boy who sat in front of me going to grow up and marry a girl with glasses! Not only could I suddenly see well, I could see into the future. He would fulfill his singular dream of becoming a long-haul truck driver and now some other girl - one who wasn't cursed with bad eyes -would win his roaming heart and wave him off each week as he took to the road. I cried myself to sleep the day we picked up those humongous brown spectacles. It was a life sentence that not even a "celebration" dinner at Red Lobster could fix.

Fast forward to the present on a late evening when I've succumbed to the irritation and traded my scratchy contacts for super-chic BCBG frames and we have an episode of late night emotional upheaval, which seems to materialize when she has reached the titration point with her diabetes. I try to remember how the perceived curse of my bad eyesight made me feel - isolated, different, not as cute - and remember that what she is dealing with is so, so much worse. I cannot imagine having to deal with something like this in the 5th grade and beyond.

Thank God she thinks glasses are a treat. (And yes, his name really was Loren and he really wanted to be a truck driver.)

Numbers Then Deuteronomy

My new hobby is reading and learning from diabetes blogs. Along with the massive amount of information on current research, trials and breakthroughs, there is generally measured but hopeful talk of a cure. But sometimes I come across writing by parents of diabetic children and I can sense the swirling eddy of fear just under the surface. What if a cure doesn't come in my child's lifetime?

Eighteen months ago, had someone asked my view on having a child with a chronic, life-threatening condition, I would have shuddered. "God that's just too awful to contemplate." Now, I know it's awful and around the clock I think about it, try to manage it and do my absolute best to lessen its burden on her body and mind. The thought that there may not be a cure for her is just one of many too awful things to entertain.

So I think I'm like a lot of parents who supress all these fears, tamp 'em down and keep them from bubbling up too often. After all, you just cannot live without hope. It's impossible; hope and faith. It may be a long, hard dusty row to hoe, but even if it takes forty years I really do think we'll finally see the promise.

These Are a Few of My Favorite Things

The seat warmer in my car, cream of wheat, salad with walnuts and craisins, colorful sharpies, L'occitaine hand cream, making my husband laugh, geraniums, tempurpedic, NESN from April to October, wool socks, building a stockpile of test strips, Tanglewood, lists, dunkin' coffee, squeezing my kids, fixin' up this old house.

My Dead Cat Lives Under Our Tree

Well, really under the rock that's under the tree. This is a far cry from my long-ago threat/wish to have her stuffed and placed on the mantel when it was her time. (This statement might have been made during her first birthday kegger.)

I'm not obsessive about pets, but this cat was a talisman during some of the most significant events in my life - leaving college, having children, the upheaval of a divorce, two cross-country moves, the miracle of meeting my husband, my daughter's diabetes diagnosis, another cross country move. Ashley was a little gray thread that kept everything from being too disjointed.

She taught me about responsibility and seeing something through to the end. Understand, this was not a nice animal - she was surly, prone to biting and really not interested in humans other than me and eventually Brad. She also had a little hacking problem. Nobody could stand her. But no matter how much money she cost and the little return she seemed to provide for her care and luxurious lifestyle, I could never give her up. She depended on me and faithfully fulfilled my one request of a cat - sleep on my feet at night and keep 'em warm. My bonus came on sick days when she would curl up by my chest.

Late in life, she started going outside for little adventures, having been an indoor cat for better than 8 years. She killed and ate a bird sans front claws, poked her eye on a cactus, coexisted with the rattlesnakes and coyotes and had an uncanny knack for finding her way back, no matter how many different places we lived.

I guess it is fitting that her last chapter was to accompany me from Texas to Boston - again. She was not well, but she behaved on the plane, saw us through the move into our new house, managed to terrorize our neighbors cat, spend some time sunning on the deck and then when we were all settled, she just laid down. Her 15 years of work was finally done; look what the cat brought home.

Celebrate Good Times - Come On

World Diabetes Day = an evening drive past the Boston Scientific building to see their blue circle logo in commemoration and a swing by Ben & Jerry's. So just suck it, Type 1!

Get to a doctor, STAT!

Getting serious. It's World Diabetes Day and while the day is set aside to draw awareness to the global epidemic of both Type 1 and Type 2, this year's campaign focuses on children with diabetes and preventing diabetic ketoacidosis:

"If not detected early enough in a child, the disease can be fatal or result in serious brain damage. Yet diabetes in a child is often completely overlooked: it is often misdiagnosed as the flu or it is not diagnosed at all. Every parent, school teacher, school nurse, doctor and anyone involved in the care of children should be familiar with the warning signs and alert to the diabetes threat."

I cannot stress enough that if there's ever any suspicion of diabetes, get to a doctor immediately. My daughter had all the warning signs - thirst, exhaustion, weight loss and frequent bathroom trips. I even thought to myself, "Hmm...this kinda seems like the warning signs for diabetes." What I didn't know is that the day that occurred to me, I should have taken her to a doctor. Reagan's DKA was severe and it took considerable effort on behalf of the pediatric ICU to stabilize her. Kids may not look sick, don't really feel sick - just yucky. But they can be extremely, dangerously ill. It is not unheard of for a child to die of DKA.

Know the warning signs, take them seriously and spread the word. Insulin is not a cure, but it will save a life.

Every Kiss Begins With K (and My Kids Fight All Day)

While cruising Deadspin the other day, I noticed the world "Kerfluffle." Now that's a good word. I like it. And out of nowhere other interesting K words came flooding into my head. In order: Kafkaesque, K-zone, Ketoacidosis, Kinetic, Knott's Berry Farm (not really a word, but there it was...), KTHXBAI (also not a word, but the most awesome combination of txt and lolcats.)

Well, krap with a k - what do I do with that nonsense? Let's use it as a writing prompt.

After a day full of kinetic activity at Knott's Berry Farm, where we ate enough jelly samples to send us all into ketoacidosis, the kids began kicking one another in the K-zone. Life as a parent of the karate kids is becoming Kafkaesque. I'm ready for a spa week. KTHXBAI.

Bless Me Great Pumpkin, For I Have Sinned

It has been three years since my last carving. My intentions are the best, but let's face it: I am the bah-Humbug of Halloween, a sinner on the devil's holiday.

I have been sick on more October 31sts than I can count. Once, in an ICU and this year in the ER for a migraine. (Didn't even get the 'good stuff' but that's another story.) And now, we are a diabetic family with an insatiable sweet tooth, which is a perfect disaster in the making. The Candy Man is my nemesis.

For dress-up, to sew would be divine, but those intricate, delightful and oozing with love handmade fairy costumes have never materialized. Haven't saved a dishwasher box to convert into a Rubik's cube, either. To top it off, I had simply the greatest idea for my own costume and swore to hell and half of Georgia that this year, I would make it happen - A Rod in a skirt with bobby socks and pumps, an Easter hat, gloves and handbag, a kaballah string and a vintage Madonna record. Perfect for scaring all those little Variteks and Pedroias knocking on the door for loot. Did. Not. Happen.

My biggest guilt is that I think the pumpkin carving thing is kinda gross. Especially now that you can buy such a nice selection of pre-fabricated pumpkin-themed junk at Garden Ridge (or our "Garden Ridge of the Northeast", the open year round Christmas Tree Shop.) For far too many a Hallows Eve, I have waited until the last minute, unintentionally denying my children the pleasure of scooping nasty-smelling orange gunk with a soup ladle, slinging it at one another and then fighting over the butcher knife. So with the best of intentions, we always have a punkin on the front porch. And it always rots, both its scare and pie potential unrealized.

But this year, a miracle occurred! Sometime on the evening of Friday, November 7, one or more yard perpetrators of the squirrel or chipmunk variety used it's gnarly little front teeth and carved a 6 inch diameter circle straight through our uncarved friend, eating its way to the middle, with a detritus of seeds strewn across the deck. The next day, the hole was larger and more of the middle nether-region had disappeared. And on the third day, they wiped out the buffet. So I rolled the giant gourd shell away to the curb, confident that those cute, but nasty yard rodents will do nature's dirty work and the pumpkin will rise again - from some random place in my yard late next summer.

NO...wire...hangers

I feel like a very, very bad mother when Reagan's blood sugar shoots high. It seems to go sky high for no apparent reason and while she says she cannot tell, it's clear by her behavior that something "ain't right." So on top of it all, we might argue about her attitude or she might stomp off and refuse to address the issue with insulin, water and/or a walk around the block. Forget checking ketones - that seems to be a lost cause.

So, I'll put on my virtual workout gear, get on my mental hamster wheel and start obsessing about how we should all exercise more, eat more vegetables, less carb, do a better job on the tracking charts, on and on. Well, yeah, duh. But most of the time we do pretty well and I just don't know how to do any more. At some point, the more you try to control the harder she pushes back.

Where is the balance between needing to do better for your child and acceptance that you're doing the best you can?

A Blank Slate

I have no idea why I think this blogging thing is a good idea. For one, I have a sneaking suspicion jumping on the bandwagon now is a little lame. Then, there's my inability to focus while simultaneously trying to accomplish about a dozen different tasks. The altruistic goal is to share highs and lows of diabetes. (Bad pun - my daughter hates it.) But I'm just going to power through this and say why the hell not and caveat the whole thing by saying I likely don't have much smart commentary or helpful information to share on the medical front. Plus I like to write ridiculous stuff. So here goes.

For my first entry, I'll call attention, by way of Stuff White People Like #113 Halloween, to an old favorite story of mine. [Cue some grandma music here...] My best halloween story took place as a sophomore in high school when my parents were conned into dropping my friend and me off at 6th Street in Austin. Kerry dressed up as Hester Prynne, complete with the bonnet and a Scarlet A. We somehow managed to attract the attention of a wildly cute, but majorly intoxicated Frat boy, who honest to God stumbled around and slurred, "I know you...I know who you are...You're LESTER HEN."