The Math

Math has never been my friend. It's been the bane of my existence and the savior of my life - all at the same time - since I was in grade school. Math and I - we have a love/hate relationship, for sure.

Lately though, I am perpetually frustrated that, in spite of me and math being totally in-sync when it comes to my diabetes care, I am still landing up with bloodsugars that don't make sense. I wish the rules around diabetes care - around dosing, bloodsugars, and all of the phenomenon that come along with the disease - were more finite, more consistent. You know - if I do X then Y happens...

Some examples.

I'm starting with a bloodsugar of 120. If I eat a corn muffin and the package says it has 45 grams of carbohydrate, I'll give 3 units of insulin. If I eat a large sized wheat roll and the package says it has 45 grams of carbohydrate, I'll also give 3 units of insulin for that. I'll give a slight correction to bring my bloodsugar down to my goal bloodsugar of 105 - that's another .3 in both cases. Why - oh why - when I eat one does my bloodsugar skyrocket to 255 and when I eat the other, I slide in at 108?? I know - the fat content, the sugar content, the fiber all factor in... But does anyone have a formula that will help me to get it right every time or even every other time? If you set rules, I can follow them - I don't like to - but I can.

Another example... If I test at 80 and I feel symptoms of a low, should I always treat? In the past, I've found that treating a bloodsugar that high results in a bloodsugar too high for my comfort (say, in the low to mid 200s) - and I've found that sometimes not treating results in a flummoxed and angry Nicole with a 41 on her hands. How do I tell the difference between a normal bloodsugar that's on its way to a low and a normal bloodsugar that's going to stay exactly where it is - or even worse, that's going to rise astronomically? And how does the Somogyi effect factor into this? When does Somogyi kick-in? At 80 is my body already trying to bail me out or do I have get really low to have it happen? Can someone, somewhere please come up with some rules around this stuff? Because there is nothing worse than a 55 that turns into a 300 within 3 hours or an 80 that turns into a 40 in 30 minutes...

I just want this to make more sense - I want it to be more rules-driven and less trying to hit a pencil mark dead-on using a faulty weapon. Some days, I think I'm not equipped to deal with the chaos and nonsense that is this disease. I need some order.

A Toast

There’s a ruckus. And you’re a part of it. It’s coming from a building high atop a hill. The voices rise up and there’s a steady thr-um, a rhythm, behind it all.

The lilting, screaming, filled with hope and wonder voices of girls “We’re from Camp Barton, and our tribe’s the BEST tribe, we fight the Camp Joslins they’re SEVEN FEET TALL!” And underneath, the pounding of small hands on long folding tables.

The air smells of pine and cedar and pond water and sun tan lotion and bug spray and sugar-free red juice. It is a smell as unique to this place as the sounds rising up from you and from this building on a hill. And there is a feeling too – a feeling that you want to stay right where you are forever – right in this moment – with the sounds and the smells all around. You’d rather be here than anywhere else.

The mornings are cold and the days are pretty hot – it rains sometimes. The bullfrogs that live behind the cabins make so much noise at night, it’s hard to sleep. The excitement that never seems to leave you when you’re here makes it even harder.

You are home. This place knows you, and it loves you in spite of your struggling and your imperfections. And you love this place – with its funny smells and its old cabins and its cot-beds and its rules around food and its non-stop, frenzied activity. You love it in spite of its flaws – in pure fact, you love it BECAUSE of them.

Your life seems less complicated when you’re surrounded by the friends you’ve made here. The two weeks – if you’re lucky, the four or six or eight weeks – you spend here are the ones that you look forward to all year. They are, sometimes, the only ones that really matter to you at all. You know when you arrive, you’ll be welcomed, you’ll be understood, you’ll be loved – and you’ll be more able to accept the disease that brings you here. Your friends will tell you everything about their year at school, about what they’ve brought with them for the stay, about what they’re looking forward to – and what they’re not looking forward to. There are new friends too – who look a little afraid – and you’ll do your best to make them feel as welcomed here as you do. Soon, the lines between the old friends and the new will be totally imperceptible.

You’ll learn a lot, you’ll laugh – more than you thought you could, and you’ll get to say the things that you can’t say to everyone. The things that mean the most to the people here – and those people are often thinking or saying those same things – the things that few know as intimately as you know them.

And the noise from that building on the hill, the ruckus you’re making, rings out from your heart and carries over the pond and into the skies above the pines.

This is your place – your time – the moment you’d like to keep forever. And years later, when your life has brought you places miles and decades from those sounds and smells, you’ll still visit them. You’ll remember those days and the way they made you feel – and those memories will sustain you when the going gets tough. And you’ll carry with you the friends you made here – and you’ll be able to say to them the things that you can’t say to others – the things that few know as intimately as you know them.

Sing it with me now, those of you who know this place… “We’re from Camp Barton and our tribe’s the BEST tribe. We fight the Camp Joslins, they’re SEVEN FEET TALL. They try to BEAT us, but they can’t DEFEAT us, cause we’re from Camp Barton and we’re off the wall! Siiiinnngginggg……!”

Sometimes, I wish for more than the memories. And I raise my glass to the Barton Camp – and the places like Barton, that give kids with diabetes a chance to feel really, truly at home – really, truly normal, really, truly accepted (flaws and all).

Fabric

I hope you'll head on over to Kerri's place and browse through the blog entries featured in the Patient Consumer Parade. My post, Most Difficult, is among the selected entries. More importantly, there are a dozen other entries that deal with diabetes and how management of this disease and other chronic conditions somehow become a string in the Fabric of our Lives.

Syml-out

You may be wondering - why has Nicole not posted anything about Symlin lately?

The answer. I am no longer taking Symlin.

About two weeks ago now, I had five extremely frustrating days of bloodsugars. I did nothing but bounce. I tested 67 times in those five days - with only 6, yes 6 - in-range bloodsugars. I'd start the day at 240 or 190 or 360- give some Symlin, Insulin, have breakfast, an hour later I'd be 26 or 38 or (just once) 109. An hour after that, I'd be on the climb again - 181, 204. I was skipping lunch because I felt so crappy. I'd run in the two or three hundreds ALL afternoon and then swoop down before dinner - I'd have to get my bloodsugar up before giving meds and eating - and then I'd deal with more bouncing after dinner. My life was a series of low blood sugars and huge rebounds. The days surrounding those five frustrating days weren't much better - the highs and lows were much more frequent than I'm used to and the in-range sugars were next to non-existent.

I called the doctor. Many times. I actually cried on two of those phone calls. Stupid, persistent, angry, frustrated tears. I couldn't understand how adding one thing to the mix could throw me off so damned much. I told the doctor I didn't really think it was working for me. Sure, I was losing weight - a total of 16 pounds, to be exact - but I was a mess. I was tired and cranky and I felt gross all the time.

We decided that, given all the issues the Symlin unearthed - for example, sometimes completely inappropriate basal rates - maybe it would be better if we got the rest of the variables in order and then reexamine the Symlin sometime down the line.

So - my bloodsugars are pretty much getting back to normal. I've kept the weight off too, which is good.

In the past two days, the sugars have looked like this:

Tuesday:
8am - 117
10am - 168
11am - 121
12noon - 78
2pm - 309 (drastic lunch miscalculation)
4pm - 161
6pm - 114
8pm - 139
11pm - 75

Wednesday:
8am - 159
10am - 123
12noon - 98
1 pm - 63
1:15pm - 89
2pm - 220
4pm - 139
6pm - 118
8pm - 141
12midnight - 93

This AM I was 172 - but I retested and got a 161...

A few more adjustments and we just might be ready to Syml-in again... I'll keep you posted.

All of this got me thinking, though, about what an incredibly inexact science controlling this disease really is. Sometimes, there are perfectly reasonable explanations for out of range bloodsugars - miscalculations, overeating, too much exercise... But other times - and it feels like too often - the disease has a mind of its own and I am a passenger aboard a boat that's caught in the riptide - I am utterly helpless to the throws of the waves. How can it be that I have two identical days - insulin, food, stress-wise and still end up with bloodsugars on opposite sides of the spectrum? How can it be that I read labels and count my carbs to the morsel - and still I sometimes end up with wonky after-meal sugars? I mean, if these things happened with consistency, I could figure it all out - but it's so random and nonsensical - it's like I'm trying to read Chinese characters.

I guess, like the rest of us, I'll keep doing the best I can. And hope it's good enough.

Most Difficult

I remember vividly the first time I was asked “What is the most difficult thing about being a diabetic?” I was sixteen. And I remember saying, with unfettered conviction. “I hate the shots and the finger sticks. They make my skin lumpy and calloused.” I was confident that the physical inconveniences were the worst things I had to bear.

By that time, I had been a part of the American Diabetes Association's Youth Congress for several years and had fought along side other volunteers to mandate coverage of diabetes supplies in Massachusetts. I had an all too vague, disconnected – teenage – understanding of the cost of my diabetes. I was covered under my parents’ health insurance plan. I knew nothing of deductibles and co-payments or cost ceilings or limitations around preexisting conditions. What I knew was that 8 years of shots and finger lances had dealt me a body that looked different.

Over the years, the answer to the “What is the most difficult part?” question has changed too many times for me to count. Ask me today – ask me tomorrow – the answer will likely be different. This disease and my body’s reactions to it change so much from day to day, hour to hour, minute to minute. I sometimes feel like a top being spun repeatedly by a rambunctious six-year old – I never quite get a good solid, balanced spin.

But since I left college and started working, there has been one difficulty that rears its head with disconcerting frequency. As the years have worn on, it’s become the most common answer to the question. The cost. The expense. The dollars that it takes to stay well and to deal with the ever-changing physical challenges diabetes presents. And the worry that I can’t afford to be as well as is possible.

Really.

How do you decide whether you need 50 or 100 more strips than your insurance is willing to cover - when the costs of the strips is an additional $50-100 dollars that your budget can’t accommodate?

How do you decide whether you really need a yearly dilated eye exam – when your insurance only covers one every two years?

How do you decide which supplies you REALLY need to renew regularly – and which ones you can make last?

How do you wrap your mind around the idea that over $500 of your monthly budget will be used to simply keep you alive? Not nourish you – or make you stronger – just keep you alive.

I’m not angry about the cost of diabetes – I’m just frustrated by it. It’s a challenge that I hadn’t anticipated.

I knew early on that my life would be filled with physical inconveniences and mental obstacles that I’d have to maneuver around and over – but I guess I’ve always assumed I’d be able to afford everything I need when I need it – that I wouldn’t have to worry over my next month’s supplies or the cost of doctors’ visits. I have always had a good job – with health insurance coverage. I have never spent carelessly at the expense of my health. But in the past three years, I’ve been forced to make choices – compromises – to ensure that I’m giving myself the BEST possible care. I’ve learned to conserve, to recycle, and to think creatively.

More importantly – I have learned to become an even more effective, aggressive and persuasive advocate.

I have learned that the first “no” from an insurance company is not the final answer.

I have learned that most doctors want to give their patients the best care and they’re willing to work with you to make that happen.

I have learned that sometimes you lose. Sometimes, even the most persuasive argument pales in the shadow of the big-business that is the healthcare industry. And in those times, you pay or you compromise. And, I think, for the most part, we pay – because compromise is simply not acceptable when you’re bargaining with your eyesight, or your nerves, or your heart, or your LIFE.

How much am I willing to pay? Am I willing to give it all up to be as healthy as I can? I hope I’ll never have to come up with answers to those questions – though I fear that someday I might.

Until then - everyday, I get up. Everyday I live. Everyday I test my bloodsugar 12 times a day. Everyday I brush my teeth, brush my hair, get dressed in something I like. Everyday I also wear an insulin pump. Everyday I kiss my boyfriend, feed the cat, go to work. Everyday I take an aspirin, cholesterol medication, thyroid medication. Everyday I come home and sleep in my bed. And everyday, I wonder what the next day holds –because it surely holds more than diabetes and all of this worry. The next day holds the promise of something great – something that transcends cost and concern (faith, love, a cure?). I hope I have the courage to let go in those moments of promise and enjoy them – because, in the end, they’re far more important than insurance plans, and co-payments, and pre-existing conditions – in the end, they’re everything.

Pride

Congratulations to my good friend, Autumn Grant, who on Saturday was crowned "Ms Wheelchair America."

I am incredibly proud to count Autumn as a friend. We met in high school - and reconnected again in the past year. I'm so pleased that we did.

Autumn is a beautiful, witty, smart, and funny woman - who inspires everyone around her - including me - to be the best person they can be. She is larger than life. Funny, when I think of Autumn, I never think of her as a friend of mine with Muscular Distrophy or a friend of mine in a wheelchair - I think of her as my friend who makes me laugh or who likes mexican food from Tito's or Harry Potter just as much as I do. I think of all of the things about her that are not defined or explained by her illness. And I love that.

In the next year, Autumn will travel the country to represent the Ms. Wheelchair America organization - and speak on her platform "Independence through Education."

The mission of the Ms. Wheelchair America Program Inc. is to provide an opportunity for women of achievement who utilize wheelchairs to successfully educate and advocate for individuals with disabilities. The organization could not have found a more accomplished, poised and eloquent representative.