Reflections...

Thanks to Kerri for the inspiration to write this post. What an odd year it's been - filled with up ups - and down downs. I can only hope the coming year will find me with strength enough to deal with the challenges to come - and peace enough to realize that my life presents me with much more true, utter joy than it presents me with challenges...

In January - just a month into this blogging business - I wrote about making it through another day: And I wake up the next morning -- by yet another miracle. And the sun is hot and melty in a new summer sky. And I am looking back on the day before and I am curious as to how in hell I am alive...

February found me lazy, and telling you about my torrid past: In a chicken coop... Actually, a little shack that used to be a chicken coop that my friend Bryan bequeathed to me when he moved to Wisconsin.

In March, as a community, we started a battle. I feel proud to have been part of the charge: When I was diagnosed with diabetes, health insurance companies in Massachusetts were under no obligation to pay for diabetes supplies - supplies like test strips and lancets, syringes and insulin.

By April, Julia's O had inspired me to try something new - and I had a moment of unadulterated pride in myself: I surprised myself... You know why? Chicken Thigh.

Then came May - when WE WON the battle we'd started back in March: Senate bill #1955 died today on a procedural vote.

Year #24 came in June like a Lion: Although I feel proud of the way I live with this disease, I still long to know what my life might have yielded without my having diabetes.

July found me outraged and sad: I cried today, because I know that roadblocks have been built on the paths to cures - I cried because I am tired of living with fear - I cried for myself and for my friend A, who uses a wheelchair in her fight against muscular distrophy, and my grandparents who died from complications of diabetes, and my grandfather-in-law who lives his life confused and broken, in a nursing home for people with alzheimers.

The heat of August brought me back to summers past: 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.

And the cool fall wind - and September - brought me to a new beginning: We've spent the past week trying to settle into our new home.

Driving wind and rain in October, belted the trees - and whispered to me about how strong we all must be: All of them are whirling, like mad dervishes in the wind.

Although I spent most of November in a bit of a funk, the ghosts of my past helped me to realize how far I've come and how much I've grown: That strength that my disease has built in me - the strength I wouldn't have without it.

And finally in December, I reissued the challenge I've been issuing myself, my body, my diabetes, since I was diagnosed all those years ago: Dear 329, Game on - f**cko.

I'm looking forward to the year ahead. To reading about your trials and triumphs, to lending support when I can, and to continuing to be a part of this amazing community.

Happy Holidays - One and All

Whether you feel like this:



Or like this:




Or like this:



I wish you all, out there in Blogland, USA and around the World, happy, healthy, magical Holidays!

Another post about hope...

I wonder what it was like to hope - and to actually get what you were hoping for, when you were wishing yourself from death by starvation to a semi-complicated existence... I wonder what it was like to be this boy - shown before insulin was used in humans and then after 3 months of treatment with this "miracle drug."



I wonder what it was like to be Banting and Best - realizing that they'd actually SAVED countless people from a torturous death. I can't imagine how thrilling and rewarding that must have been.

And I wonder if I am selfish or stupid to hope for a life less complicated when there are many people whose suffering is so much greater than my own. I wonder if these scientists will know that thrill that Banting and Best felt all those many years ago. I wonder if they'll someday realize that they have relieved the exhaustion, the frustration, the fear, and the physical toll that diabetes imparts on me and so many of my friends.

And I'm hoping - but only a little - and ever so cautiously. I'd like to say I'm trying not to think about it - but that would be a lie. I have clicked on that article link at least twenty five times in the past two days. I have googled the names of the scientists. I have searched for confirmation of their theory, for critiques of their work. I have searched for any information that might give me permission to hope - or permission to pass this off as just another false alarm.

Dear 329

Dear 329,

When I told the doctor about you yesterday - he looked very concerned. His eyes cast down as he put the drops in to take a look at my eyes. I explained you'd been around a lot lately - along with some others of your kind.

Looking very surprised as he peered into my eyes with a very bright light - then took photos of the backs of my peepers, the doctor told me my eyes look excellent. Excellent - in spite of your presence in my life. He warned, though, that having you around - in partnership with a few 205s, some 29s, and a handful of 140s - is not good news for my overall health, let alone my diabetes health. He gave me this information as if it was something I'd never heard before - even though he and twenty other doctors have counseled me about the danger of having you here. They don't seem to understand that I'd like to banish you - but you're a stubborn sort - and you've got staying power. Staying power would be great if you were, say, a cute new hair color - but you're not.

Sometimes, I think you're not so bad. I know I'm in denial. I think I can change you - I think I can live with you - I think it's all my fault you're here. I guess that's true, on occasion, I've invited you over. But most of the time, you come sneaking in the back window and I don't even hear you. You scare the crap out of me - then, you make me angry and I throw insulin at you - lots and lots of insulin - often, way too much insulin. That's when your staying power kicks in. You stand up like a dragon, hissing fire while I toss unit after unit of bandaidy smelling water at you in what feels like a futile attempt to make you go away. Then - just when I get you kicked, you send in your old buddy 32 or 41 or 20 to remind me that you've still got some sort of sick power over me. And as I try to make your little friends leave, I know there's the promise of you rebounding back and biting me in the bum again.

I have to tell you, 329, I hate you. I wish you would just go away. But I know, in the end, you really can't, and you probably won't. So I'll live with you - and I'll live with having to deal with you. But I'm going to do my best to keep you a at a minimum - to exorcise you. I know you won't cooperate, but I thought it only fair to warn you.

Game on - f**cko.

Sincerely,
Nicole

Diabetes video ReMix

You go, Wilfred. Good god, this is funny.

It's complicated.

I'm coming up on 25 years of having diabetes. I am still nearly free of "complications".

My eyes amaze the doctor I've seen for years, my kidney function is - in the words of at least two endocronolgists - better than normal, my feet and hands have full feeling and are free of burning and pain.

The only place diabetes has crept up and reared its ugly head in terms of complications is in my gums. Yup, you read that correctly, in my gums. I've battled periodontal disease since my early twenties - in spite of the fact that I've been flossing at least twice a day since my late teens. Numerous dentists and specialists have attributed the deterioration of my gum health to the diabetes. Yesterday, I got the news that in the coming year, I'll need over $3,000 (out of pocket, mind) in gum surgery. This news got me thinking.

Aren't we all, even those of us deemed "complication free" dealing with complications?

This disease is damned complicated.

It's complicated when my bloodsugar drops to twenty in the middle of the night and my boyfriend has to, as calmly as he can, deal with my ravings and fighting and get me to treat the reaction so he can avoid calling the ambulance.

It's complicated to explain the difference between type 1 and type 2 when someone says, "I can't believe you have diabetes, you're not really fat."

It's complicated to have to remember to check my bloodsugar as often as I'd like, and to have to deal with the guilt I feel when my humanity creeps in and I forget.

It's complicated to wonder how long I can hold off this disease's full-scale assault on my eyes, my limbs, my organs.

It's complicated to look everyday at the smaller assaults the disease issues on my body - my calloused fingers and the pump marks on my belly and hips and thighs - and sometimes wish that I could close my eyes and dream my whole life over again minus the diabetes.

It's complicated to realize that my cholestrol numbers need to be lower than the general public's numbers, that my weight needs to be kept in better check, that I've got to visit more doctors for EVERYTHING. It's complicated to know that some things are just more challenging for me because of my diabetes.

It's complicated to keep tabs on everything. To make sure I've got my pump on in the morning, to remember to replace that empty bottle of strips, to be sure, when I leave the house on a day trip, I've got plenty of extras, to eat when I should, to test before I get in my car and drive...

I've got complications related to diabetes.

Most of them aren't physical.

In the past several months, I've just been so down when it comes to my diabetes life. My numbers haven't been great - but they haven't been terrible either - they've just been so-so.

There is just too much to deal with sometimes - too many things to explain, too many arguments to have around my care and how it gets covered, too much to worry about. I don't really feel as up to the challenges as I have in the past. I know this will change, as it always seems to, but I'm angry at myself for letting it get to me.

Lately, my answer to many people's diabetes questions has simply been "It's complicated." Nothing more. I'm ashamed of that. Because I know it IS so much more than complicated. And I know that there are others out there who are dealing with it - AND spending time educating others and all I can manage is "it's complicated."

I hate feeling this challenged - this weak - in the face of something I've mostly dominated during my time with it. Where have I gone? Where am *I*? Because, surely, this whining, sniveling, simple wreck of a thing that inhabits my body isn't ME.

Phantoms

My parents divorced when I was 9 years old. At that point, I'd had diabetes nearly one full year. I've been asked if I thought the weight of having a child with a chronic condition spoiled my parents' marriage. Although I know that sometimes, having a child with a chronic illness can have a terrible impact on a marriage, my parents relationship was falling apart for years before I was diagnosed. If anything, my diagnosis helped - or forced - them to hang in there a little longer - to spare me further trauma. All of that dramatic back story to get to this - my father had an apartment that my brothers and I visited on weekends and during school breaks.

Dad's apartment wasn't anything special, really. Except that it was something new - figuratively and literally. It was in a brand new development that sat by a heavily wooded area on the outskirts of the city where I grew up. I remember how it smelled so new. I remember how the carpets hadn't been padded down from wear and tear and the walls were the cleanest ivory walls I'd ever seen. I remember his big kitchen and the little backyard with the grill and the fact that his apartment had TWO! bathrooms - two bathrooms was big thing for a girl who'd grown up with just one. My brothers and I shared an upstairs bedroom - with my brothers sleeping in the bed and me on the futon dad had acquired.

What I remember best about dad's apartment, though, is the phantoms. Seriously - I saw ghosts in that place. Two of them, at least. There was a very tall indian brave that would stand over me and stare down - looking right into my eyes. He was so real I could smell the raw, outdoorsy-ness of him. He'd come at least two nights a month when I stayed at dad's. And then there was the older indian woman who'd sit in the old rocking chair that was in the corner of the bedroom. She'd just sit there and rock back and forth, slow and deliberate. She'd come less frequently than the big scary brave. At first, I'd awaken screaming at the visions - waking the entire house. My brothers would shoot up in bed, terrified, and my father would come running from his room.

Typically the following argument would follow these startled awakenings...

"Nicole, you need to test your bloodsugar, you've had another nightmare."

"But I don't feel low and that indian (or those indians, or that old woman) was here again."

"Nicole there is no indian, please test your bloodsugar."

"Fine."

And I'd test. Most of the time my bloodsugar was just fine. But my father, convinced I must be falling fast, would give me a snack before he let me turn in again. And most of the time, I'd wake up three hours later with cotton mouth, having to pee like nobody's business, and with a bloodsugar in the 250s.

Sometimes, I'd argue further about testing - insisting I wasn't low and that the ghosts were real.

This went on for the entire five years my father lived in that apartment. Five years. The carpet got old, the walls got dirtier, the kitchen and the grill lost their luster, and the extra bathroom stopped seeming so glamorous. But - those ghosts NEVER went away.

After the first several times, I stopped screaming, stopped being all that afraid. I'd sit and look up at the brave or the old woman, then close my eyes tight and look again... Most of the time, when I looked again, they were gone. When they weren't, I'd just repeat the process - eventually, the phantoms would go away.

Years later, my Aunty Kaye - who is wise and wonderful, told me that my dad had told her about the things I was seeing in that house and wondered what he could give me before bed to stop these nightmares. My Aunty Kaye told him he'd have to give the spirits something, not me, if he wanted it to stop. My dad told her she was crazy. But, she told me, she wasn't crazy - and neither was I.

Those things, friends, were REAL. As real as real could be. And they wanted something - though I'm still not sure what... Maybe just to be seen, maybe something more. I guess I'll never know.

I wondered out loud to my Aunty Kaye why no one else had seen them - why they hadn't appeared to others. Aunty Kaye told me it was probably because of my diabetes. Spirits, she said, had a way of finding those of us whose bodies weren't necessarily "whole." She thought it might be because they could sense the strength - and vulnerability - of a person dealing with illness. Sense the willingness to trust the unknown - and deal with the unexpected. Honestly, I don't know - maybe I'm crazy - maybe my Aunty Kaye is nuts too - but that last bit made sense to me.

Because really, that's what diabetes is all about - trusting the unknown and dealing with the unexpected.

Trusting that if I do everything I can and make every possible effort, I'll be OK in the end. Trusting that good control will help me to avoid complications. Trusting a machine to give me a good estimate of bloodsugar, trusting another machine to keep me alive and functioning. Trusting myself enough to keep trying new things and adjusting techniques. At the same time, feeling so vulnerable - because I know that no matter how much I trust - it might not matter.

And - dealing with the unexpected. Dodging the 320 mg/dl bloodsugar - even when I've eaten just the right things, given just the right insulin, and been just the right amount of active. Treating the 20 mg/dl bloodsugar that stays at 20 mg/dl even after 30 ounces of juice. Tracking patterns that really aren't patterns at all - and trying to make just the right changes to get things back to "normal." Again - simultaneously feeling so vulnerable because what if I can't get it right one time? I could die...

Really, I'd imagine that a spirit would need to present itself to someone with some level of vulnerability - openness.

Plus - it makes sense that a spirit would want to present itself to someone who might be willing to accept that something they're seeing might be so - even if it CAN'T be so...

An example: I CAN'T be 320 - I gave the right amount of insulin. is pretty much equal to There CAN'T be a giant smelly indian standing there - ghosts don't exist.

And, it also makes sense that a spirit would want to present itself to someone who could deal with what they're seeing...

An example: Ah, my bloodsugar is 25 and even after ALL this juice, it's not coming up - but I'll just keep treating, keep testing. I'll be alright - and I know it. is pretty much equal to I'll just sit here and watch that giant smelly indian for a minute, then close my eyes tight, and he'll probably be gone.

I wish a ghost would visit me now - and that I'd be able to help them in some way. But I think if my Aunt's theories are correct, the spirits probably sense more of my strength now than my vulnerability. That strength that my disease has built in me - the strength I wouldn't have without it. I feel vulnerable now - but far less often - because I am living for today - for this minute and I know I am stronger than this disease will ever be.

I guess I don't mind being without phantoms - I much prefer feeling strong - and whole.

Just the Facts, Ma'am...

Kerri has tagged me... Now - five random facts.

1. I have a gross addiction to trashy magazines. I am sometimes ashamed that I can't go into a store that carries these magazines without buying at least one - sometimes many more than one. It feels silly and immature. And mostly, I buy them to look at the pictures. Which feels even sillier and more immature.

2. I am a middle child and I have middle-child syndrome something awful. My father used to refer to the three of us as a girl sandwich on boy bread. I thought that was really funny - when I was six. It is not as funny now that I'm in my early thirties.

3. I bite my fingenails compulsively. All the way down to the quick. And the few times I've made an attempt at having "tips" I've bitten those off too. Nerves? Boredom? I don't have a flipping clue. I just do it.

4. I don't like yogurt or honey or tomatoes - unless the yogurt is frozen, the honey is mixed with mustard, or the tomatoes are turned into sauce, salsa, or some other something that's not really tomatoes.

5. I enjoy writing letters. Not notes - though I enjoy writing those too - letters. I like sitting down and writing someone about what's happening here - what's happening there - about anything, then putting the thoughts in an envelope and putting them in the mail. It think people enjoy receiving them too. I believe letter writing is an artform - and one that has been nearly lost in the fast-paced internet age. Seriously - you provide me with an address by email and I'll write you a humdinger of letter.

And... 6. Yes 6. I do not like tagging. So - if you want to share your facts, make a comment - providing your blog address and consider yourself tagged.

Trees

The wind is screaming outside. It sounds like a wounded animal. The rain is slapping hard and fast against the house and the ground, making a pattering noise that seems to give rhythm to the wail of the wind.

But I'm most interested in the trees.

I'm watching them out the bedroom window. Some are huge, thick and tall, lurking over our house like limby, extra-terrestrial creatures. Some are small, I can just see their tips through the high-set windows. All of them are whirling, like mad dervishes in the wind. Their dance is at once terrifying, beautiful, and fascinating.

I am wondering how in Hell they will survive. I am wondering if one of them will decide that today is their breaking point and come crashing onto the lawn, or the car, or the house. I am wondering how many times they've danced like this - in the mean, cold wind.

Their thinner upper limbs bend impossibly, like the legs of a contortionist. It seems like at times they are folded in half. Their trunks even sway a bit – giving in to the rain-soaked softness of the earth. But mostly, they sustain, as the wind beats at them – angry and screeching. They stand, even the smallest, stretching tall, into the breath of the storm – almost craning into the pouring rain. I watch some branches fall – mere twigs as well as giant pieces – and I watch as the trees they fall from just stand there, so solid. I see one tree that has fallen altogether. The scene makes me feel so strange.

The trees remind me of those of us who live with chronic or life-threatening illness. Many days bring the wind and the rain – and we stand there, strong, flexing ourselves against it – reaching into it. Even the smallest of us knows to bend in the wind, to stretch toward the cold, hard rain. Sometimes, we win – the wind and rain barely move us, sometimes, we're tested – the storm tears something off, sometimes we lose - and we're knocked down.

Could it be that simple?

If it is, then there are days after the storm when we bask, like victorious warriors in the warm sun. There are days when we are nourished by the soil that holds us – that fosters us. And there are days when the wind and the rain are so sweet and soft, they're like the hands of a lover or a mother – letting us know that there is still something kind, something gentle in this world that is ours alone. And there is a day when we'll fall – and something new might grow from us.

Tired

What a week this has been.

My father was up from South Carolina trying to get his house signed over to its new owners - there was a lot of garbage to be moved out and to the dump or other appropriate places, it took a long time and I worked until I was sore. Bob's B-day was Sunday. We moved my brother and his family to a new apartment on Saturday, that day, I also worked until I was sore.

Not to mention all the bad news.

This Mark Foley business has me completely sick to my stomach. I really should be in disbelief - that people sworn to protect the public good would keep a guy they knew might be a threat to kids in office (and in a position working with children's advocacy groups, no less) - but I'm not shocked at all. It's just par for our Nation's miserable course - a course on which politics mean more than people.

The school shootings - especially the one in Amish country - leave me shaking my head at the pure bad/evil that walks amongst us. It is terrifying. But in the midst of the terror, there is still hope - provided courtesy of the families of the young girls who were slaughtered in that schoolhouse in Pennsylvania. They have urged forgiveness - and have led the efforts to support the shooter's family. They have opened their doors to those the killer left behind. In the heart of an unfathomably horrible situation, they have turned on the lights of their faith and provided warmth for their community - and for a nation that doesn't see enough forgivness, that doesn't see enough grace.

The war in Iraq continues on - and more soldiers die everyday. With more and more information surfacing about how ill-conceived this action was and is and how utterly unneccesary it was and is, it is beyond any words I could find to express how angry and frustrated it makes me to think about it. And our president blathers on like a trained ape with a parrot on his shoulder - continually repeating - "everything is fine, we're making progress, they'll steal our freedom..." Meanwhile, gas prices drop and I wonder if my pleasure at seeing my gas bill decrease is as disgustingly selfish as it feels.

Oh - and I feel like I'm back to my 1980s Cold War childhood. I wonder how long until shows like "Jericho" become as pervasive as movies like "The Day After" were during my childhood. And I know when it happens, it will be art imitating what's possible, as the threat of some dire nuclear disaster or war - at the hands of or against North Korea or some other county we've angered - becomes all too likely.

And, as I worry over everything around me, my diabetes has decided to start on a tear.

In the last week, I have seen:
*Way too many high bloodsugars
*3 bloodsugars below 30 (22, 29, 20), plus one 31
*A severely infected pump site - which required me to receive a shot in the bum. Yes, in the bum. Of an antibiotic. That stung like the blazes as it was injected. I am following up that shot with oral antibiotic for 10 days. The infection is looking much better today - on day 3.

I swear I have seasonal affective disorder. I've got a bunch of the syptoms. One night a week ago - I woke up in our house (which was at 68 degrees that night) and could not get warm. My teeth were chattering. I got under another blanket. I still shivered. I got up and got one more blanket, which finally quelled the freezy feeling I had. Luckily, we've not had a repeat of the chills. However, I have just not been feeling like me lately. It's as if my head has been occupied by some other - less comfortable and confident person. And my head has ached on and off - with one migraine coming down like a hammer and causing me to have to leave work. The doctor has run some bloodwork - it appears there is nothing physically wrong with me. So, whatever it is, we theorize, just might be in my head. And the winter is starting to dawn and my body rebels because the winter brings the dark and the increased worry and the cold and the well - you know - the winter.

I am tired. I'll admit it. I'd like a break from things. The news, the diabetes, my work. I'd like a break.

Me-Me-Me

Do you still have tonsils? Indeed. I pretty much have all the parts of my body, except for some insulin producing cells in my pancreas.

Would you bungee jump? Sure would.

If You Could Do Anything In The World For A Living What Would It Be? Write, read to well-behaved children, collect bottle caps.

How many tattoos do you have? Several.

Your favorite fictional animal? Boo-boo

One person that never fails to make you laugh? Bob. I laugh pretty much everyday because Bob's in my life.

Do you consider yourself well organized? Yeah, no.

Any Addictions? Trashy magazines, shoes, TAB cola.

From what news source do you receive the bulk of your news?
Google news, boston.com, the NY Times.

Would you rather go to a carnival or circus? Carnival. The rides, the games, that feeling of who knows what will happen next! in the air.

When you were twelve years old, what did you want to be when you grew up? At 12, I think I may still have been on the lawyer/president who had published a novel kick.

Best Movie You've Seen This Year? Spellbound. Seriously. Nothing better than really smart kids in competition and their sometimes freakshow parents.

Favorite alcoholic drink? Blue Hawaii

What is the first thing you do when you wake up in the morning? Get up, get showered, get tested.

Siblings? Two brothers - one older, one younger.

What is the best thing about your job? The tangible difference I am making in the lives of people who need our organization.

Have you ever gone to therapy? Yes. I found it to be a distinct waste of my time.

If you could have one super power what would it be? Invisibility or the ability to fly.

Do you own any furniture from Ikea? No, not yet. But Bob and I are headed there this weekend. So, you know, I will.

Have you ever gone camping? Yes. And I like it.

Gas prices! First thought? Conspiracy. Honestly, politicians must think we're complete idiots. How is it that gas prices have dropped a full .60 per galloon - ever so conveniently - just before this mid-term election.

Your favorite cartoon character? The imaginary friends from Fosters - and the Smurfs.

What was your first car? A 1973 VW Bug that became known as Crusty.

Do you think marriage is an outdated ritual? Yes. I do.

The Cosby Show or the Simpsons? The Simpsons. Though, these last few seasons have started to get a little soft - in my opinion.

Do you go to church? I used to go to a UU meeting house - and would like to start doing that again. Those places are brilliant for a free exchange of opinion and ideas - then again, they're not really churches - are they?

What famous person would you like to have dinner with? Vincent D'Onofrio or Al Gore.

What errand/chore do you despise? The dishes or the laundry. I don't like cleaning bunches of dirty things. Gross.

First thought when the alarm went off this morning? Ugh.

Last time you puked from drinking? Awhile ago now. Maybe a year or so.

What is your heritage? Mostly Irish - with some Scotch Irish mixed in. My mother insists there's some native american blood in there - but I've not been able to trace it at all. I'm pretty much a full-out mic.

Favorite flower? Daisies or lilies, please.

Disney or Warner Bros? I don't care at all. Sad.

What is your best childhood memory? The field and Lake Winnapausakee.

Your favorite potato chip? Eh - whatever. I guess if I HAVE to eat chips, I'll take those veggie chips from Whole Foods Market. Those are OK.

What is your favorite candy? Swedish Fish. Yummy.


Do you burn or tan? I don't do either anymore - I don't want wrinkles or leathering looking skin, so I slather on the 45 or avoid the sun altogether. But when I go in the sun sans block, I burn badly.

Astrological sign? Cancer.

Do you own a gun? I don't. But I have no problem with people owning them legally and safely.

What do you think of hot dogs? Yum. Love them. With grilled buns.

Commenting

So. I did something dumb. I changed over to the new Blogger Beta - they keep advertising it around when you sign in to Blogger. Damn them!

Now - I can't comment on blogs that don't run in the new Blogger Beta - and I don't think anyone can sign in to comment with their Blogger account on this blog. They can only comment anonymously. Also, someone told me they've been trying to comment and nothing has been showing up at all. This is just irritating. And there is no way to undo the beta-ness.

Of course, Blogger, doesn't tell you any of this as you're going through the process of converting.

So, I, like a feckless guinea pig walked right into their web of inconvenience.

My apologies to those of you who might want to comment and can't - do feel free to comment anonymously. Oh, and be sure to be good and nasty. So I can, in the words of any random idiotic right wing talk show host, "fire back."

Remembrance

This is Lisa Fenn Gordenstein.

Lisa Fenn Gordenstein was, says a neighbor, "the kind of person who when she saw you in the neighborhood, wouldn't just wave hello - she'd pull her car over to ask how you were."

Her boss, the President of TJX Companies, described her as an excellent businesswoman - but remembered most that she "loved being a mom."

Her husband and her two daughters - David, Carly and Samantha - miss her. Her other family members miss her - her friends miss her.

On this September 11th - the fifth anniversary of that awful day, the day that Lisa Fenn Gordenstein and 2,995 other people lost their lives, I blog in honor of Lisa.

I honor her life - as from all of the descriptions I've read, I think I would have quite liked her had I known her in person. And I honor the impression she made on the lives she touched - the impact that she made.

I hope you'll take a moment today to visit this site: Bloggers Remember - and browse other blog posts dedicated to those who were killed on September 11, 2001. I hope you'll remember the way that many of those killed lived their lives - and that you'll pray/send kind and healing thoughts to the loved ones they left behind.

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.

An Open Letter to George W. Bush - And a Plea

I cried today. I know that in YOUR grand scheme of things, that probably doesn't matter. Lots of people cry. Because they're sick or impoverished or frustrated or sad or angry or all of those things. But I thought you ought to know that I cried today.

I just can't understand how you could have used the power of veto for the first time to overturn legislation that provided a glimmer of hope and optimism for people, like me, who live with chronic or terminal illness.

I understand that your veto doesn't "ban" important research, but it certainly impedes it. Federal funding would dramatically change the scope of research around diabetes and other diseases, and would widen the circle of scientists involved and accelerate the rate at which a cure might be found.

I need that cure. I've lived for nearly 25 years with a disease that has the potential to kill me. Frankly, I can live with the ten daily bloodsugar tests, with a pump that keeps me alive strapped to my hip, with the other medications that help me keep my disease controlled. But I'm struggling with all of the rest. I live every single day with the fear of losing my eyesight or the sensation in my hands and feet, I live with the prospect of pain caused by nerve damage and the knowledge that someday my kidneys just might fail. I am more likely than other women to die at an early age from a heart attack or a stroke. It is the looming presence of these complications that frustrate and frighten me most.

I am baffled at how you can call yourself pro-life. You chose to simply ban federal funding for stem cell research, rather than consider a compromise. You chose to let hundreds of thousands of embryos be discarded rather than used to help people like me live a better, fuller life. What you've done isn't moral, it's narrow-minded and it's wasteful. And I have to live with your decision.

As you know, hundreds of labs across the country - including medical research powerhouses like Harvard and MIT - receieve federal funds. What if the cure for diabetes could have come from stem cell research in one of those labs? Further, labs receiving federal funding share their findings and review one another's conclusions - which is not the case with the few private labs that can fund their own research. What if scientists sharing their work with stem cells could have cured diabetes? Certainly, with federal funds behind this research, treatments - cures - could have come sooner.

If you'd not used the veto power, government officials could have chosen to regulate how embryos would be cultivated, handled and ultimately destroyed. But you chose, instead, to simply squash the hope that stem cell research hold for billions of people. I'm not sure how you sleep at night.

Today, at a fertility clinics across the United States, there are embryos being flushed down metal sink drains, thawed and left to expire, and dropped into medical waste bins to be brought to a local hospital and incinerated. They are being discarded - along with my hope for a cure in my lifetime - along with the hope of billions for an end to their suffering, their frustration, their dying.

I cried today, because I know that roadblocks have been built on the paths to cures - I cried because I am tired of living with fear - I cried for myself and for my friend A, who uses a wheelchair in her fight against muscular distrophy, and my grandparents who died from complications of diabetes, and my grandfather-in-law who lives his life confused and broken, in a nursing home for people with alzheimers. I cried for all of the wasted life, literally being flushed down the drain, and the potential for relief that slips away with that life.

I hope you can live with this decision.

I am sending this letter today. I am copying my Senators with a thank you for their support of the legislation - and my representatives for their efforts to override the veto. I would encourage others to do same.

Clearly, the letter I sent to the Whitehouse prior to the decision had no effect. And even though the decision is made, I think it's important for us to make a statement about responsiblity. A statement about what we think about the decision and why.

See more thoughts from Kerri, Art-Sweet, Shannon, and Kassie re: the veto.