Wednesday, August 23, 2006

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.

Monday, August 21, 2006

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.

Thursday, August 17, 2006

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.

Tuesday, August 15, 2006

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.

Monday, August 07, 2006

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.

Thursday, July 20, 2006

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.

Monday, July 10, 2006

It's working - and it's not.

A quick update regarding the Symlin Experience.

I have lost 8 lbs in just over a week. Too fast a weight loss, I think - and one strictly related to the fact that this stuff totally decreases appetite. I am lucky if I can eat the two meals a day at which I take the Symlin. I fit in fewer than 1,000 calories - and I'm not hungry at all. So, the losing weight part is working, for sure. But, it's got me thinking; do I really want to be on another medication indefinitely? I don't know. I need to talk this through with nurse at my next visit (next Monday, which happens to be my 33rd Birthday.)

My insulin sensitivity has been increased all-around. I have gone from taking between 30 and 45 units per day to taking between 20 and 30 units - more often than not, the intake is in the low 20s, where it was typically in the high low 40s before Symlin. OK news, I think. At mealtimes with Symlin, my insulin to carb ratio is at 1 to 45 or 1 to 60, at mealtimes without Symlin (which, because of the aforementioned decrease in appetite, are rare) my insulin to carb ration is at 1 to 40. My basals have decreased at all times of the day.

But, the adjustment continues. I have had more sugars over 200 and more under 50 than I'd like to be having and I've had to call the doctor at least once everyday. And, because I'm letting the doctor take the wheel - following instructions and only giving my opinion if I feel like he's got it totally wrong - I'm feeling a bit helpless sometimes. It seems like we've got the morning under pretty good control... (Ie, yesterday: 118 before breakfast, 121 one hour after, 130 two hours after, 128 three hours after - today: 128 before breakfast, 121 one hour after, 116 two hours after...) than the afternoon has to come; I've been shooting up into the 160s-250s after lunch and not coming down -- only to swoop into the 50s before dinner, swoop up again after dinner and than plummet in the later evening hours... Yikes.

So, it's working - and it's not working. I'm still feeling slightly overwhelmed.

On a side note - I didn't write anything about last weekend, because I pretty much took the weekend off. With the wedding and the driving and the memorial service... I just couldn't deal with another variable... I have started a post, to fill you all in on how the offtime went (not great) - but it's slow in coming and work is busy...

More to come.

Friday, June 30, 2006

Day 2 - Better...

After last night's little fiasco - read about that below - my bloodsugar first rebounded to 249 mg/dl (at 10:30 pm) - not high enough to call the doc per instructions, but high enough to correct. So I gave 2.95 units - and waited. At 11:30, feeling kind of cruddy, I retested - 312 mg/dl. Now, that was high enough to call the doc, but I figured, it's 11:30 and I don't want to call this late. So I corrected with a dose of 3 additional units (the pump minused out for insulin on board.)

At 3 am, my sugar rang in at a smooth 98.

At 8 am, I was 147 mg/dl - higher than my usual morning sugar, but I must say, I felt A LOT more comfortable giving the Symlin with my sugar slightly higher than normal considering what had happened last night.

I ate 42 grams of carbs at breakfast - a bowl of total and 1/2 a whole wheat english muffin with an egg white scramble. I gave 1.05 units.

After all this, I headed to work. I'm not feeling any nausea -- maybe a slight queasiness, but nothing really notable. I called the docs office, because I was feeling guilty about not having called about the 11:30 pm 312. As I suspected, he chalked the high up to a rebound from the severe low and confirmed that my correcting was right on the money... Well, alright. I also confirmed that ALL of my meal boluses are reduced - not just the ones at meals that I take with Symlin. He also explained that it may take a couple of days for my body to adjust and that I shouldn't be put off by the wonky sugars... OK...

At 9 am, 139 mg/dl - Well, that's alright.
At 10 am, 116 mg/dl - Still alright...
At 11 am, 201 mg/dl - Gave a correction bolus of 2 units...
At 12 pm, 248 mg/dl - Hmmmmmm...

I ate 15 grams of carb at lunch - only need .4 units of insulin for that - with the suggested correction bolus from the pump, my total lunch dose was 3.20 units.

At 1:30 pm, I was 218 mg/dl - going in the right direction... 2.15 correction suggested and given.

And, right now at 2:30 pm, I'm at 155. Since I'm only correcting over 200 - I get to leave this one be. Excellent.

Day two seems like it's progressing a little better. I'm concerned about the number of high bloodsugars I've had, but I imagine as I start adjusting to the drug and when they up my dose, these ought to come down some...

Now - if I only I can stop wanting to check my sugar every 3 seconds...

Some notes about being on a shot again.

It's not the needle itself that bothers me at all, in fact, I sat with my dad and stepmother this morning in a crowded breakfast room and gave my shot right there at the table. I've never struggled with hiding out in bathrooms or under tables to give my shots. It's the responsiblity of another medication - and one that's not a pill that I can put in a pill box. I have to carry the bottle and at least one - usually two or three - syringes and some alcohol swabs. It's a whole other set of "things" to add to the already too stuffed medication bag.

And - I'm deathly afraid of forgetting it. I guess I'll have to ease myself out of that; which will likely cause me to forget more readily - but I think it's got to be done.

I still can't believe I'm going to need to buy more syringes in a short while. I'm still going to reuse though - is it really THAT bad? Old habits die hard, especially when you're CHEAP, like me.

I don't think I'll get to post much this weekend - a wedding on Saturday (this ought to be fun) and a memorial service on Sunday... But I'll let you know how my first off-schedule kind of days go with the new pal-o-mine...

Thursday, June 29, 2006

Oi.

Tonight has been, in a word, scary.

I got home, determined to get the Symlin going.

A normal day for me has me giving about 20 units of basal insulin and another 10-15 of bolus insulin, depending upon my eating, stress levels, etc. The doc's recommendation was to cut my bolus doses back by 50%...

Sooo....

I got home from work, read for awhile, fed the cat, and pretty much did a million other things to put off the start.

Finally, around 7:30, I cooked a turkey burger with cheese, a whole wheat bun and some broccoli and peppers on the side, plus 4 ounces of grape juice for a total of 44 grams of carb - more than I normally eat for dinner. I wanted to have enough padding, in case -- you know?

My normal dose for 44 grams would be 2.80, tonight I gave 1.4 - and then I gave 5 units of Symlin.

You know when you sit just waiting for medication sometimes? That's what I did. Sitting on the bed, a copy of the Calorie King and the Bitch Posse beside me, The Office on television. Weird, though, I was waiting for the nausea - which, by the way, didn't come. What did arrive was a creeping, crawling, speeding freight train of a low bloodsugar. Before I knew it, I was fumbling my way through a test - and discovering a level of 24 mg/dl... YIKES...

Here's what happened next....

Stumble to the phone...

104503541326812 - first try...

1401894131464 - second try...

14018612233 - finally....

And the message "You've reached Dr. X's office, if this is a medical emergency press 6"

After a couple of false starts leaving a message, I press "6" and say "This is Nicole Purcell and my bloodsugar is 24..." And then I accidentally hang up, again...

I redial...

I press "6" and say "I'm sorry I forgot to leave my number here it is..."

I must tell you, I have an excellent doctor. By the time he called back, I had consumed 20 ounces of juice and my sugar had climbed to 58. I was more coherent, of course.

"Nicole?"

"Hi. Dr. H, I guess we might have miscalculated."

"Well, we cut you by 50% just to get you started. Tell me about tonight."

I recite "I was 101 at dinner. I ate 44 grams and gave 1.4 units."

"OK, so we cut you to 1 to 30 -- looks like we'll have to go to 1 to 40."

"And in the morning, I'm going to start at 1 to 50, OK?"

"Sounds good."

"Alright. Hey, the good news is, I didn't have any nausea tonight."

"That is good news."

"So, I hope I don't have to talk to you again soon."

"Well -- don't worry if you do. Don't hesitate even for a minute."

And that's what gives me piece of mind. Having a team that cares about me - with team members that answer the phone with their kids in the background and with a patience unmatched...

Give Me an "S"



Today, I met with a very nice nurse at the Endo's office. My adventure with the mystery-substance pictured to the left shall commence either tonight or tomorrow morning.

Here's what the nurse and I discussed today. Things I knew that were reinforced/things I learned/things I'll need to do once I get started...

* Symlin is a synthetic version of the human hormone Amylin. Amylin works with insulin to control how quickly sugar enters the bloodstream from the stomach and intestines.

Generally, people who don't produce insulin (like some of us), don't produce enough amlyin at mealtimes. Taking SYMLIN replaces the absent or deficient amylin. (These things I knew, but it was nice that the nurse took the time to ensure that I understood them.)

*Symlin, because it helps the body to process food more slowly, can lower post-prandial peaks in bloodsugar.

* Symlin can promote weight loss both because it slows the digestion of food, which means you'll feel full faster and won't eat as much at mealtimes and because it changes the way the body processes food, which means you'll feel full for longer and should snack less. (To be honest, I'm still skeptical that this is going to work in terms of losing weight, and I said as much to the nurse. She replied saying that 95% of patients she's worked with have lost weight with Symlin.)

* At each meal that I take Symlin (breakfast and dinner), I'm required to eat a minimum of 30 grams of carbohydrate.... Hmmmm... This is more than I eat now. Hmmm... How, again is this going to help me lose weight? Also - what if, because of the way Symlin works (see bullet #2) I'm not hungry enough to eat 30 grams of carbs? Looks like I'm really going to need to be looking at some good whole grain options.

* I can no longer ignore feeling low because I'm busy. This was explained to me in very lecturesome detail by the very nice nurse. If you feel low, you MUST stop and test IMMEDIATELY. If you cannot do this, we cannot start you on this medication. OK - so I will stop to test if I feel even the slightest inkling of a low bloodsugar.

* I must continue to test bloodsugar at least 8 times a day. Not a problem, obviously, since I'm already doing it. I could tell, at this point in the conversation, that the nice nurse doesn't deal with a lot of people who don't have a problem with this little nugget of information. She looked a little shocked and checked my doctor-created bloodsugar spreadsheets three times before I think she really believed that I test that much.

* They're starting me on 5 units at breakfast and dinner. If I tolerate the one iffy side-effect - (now well-known in the OC - nausea) - they'll up the dose. I'll take no more than 10 units at breakfast and dinner.

* My basal rates have been adjusted slightly around mealtimes and my boluses at all meals and snacks have been cut by 50%. I am only to correct bloodsugar if it is over 200, though my correction bolus stays the same.

* I am to call the doctor's office on the emergency line if any of the following occur: a bloodsugar of below 75 or above 260, vomiting, or nausea that I cannot tolerate. If my bloodsugar is at 75 or lower, I am to treat as I am calling the doctor's office (don't wait for the call back to get the sugar in.)

* I am to email my bloodsugars to the nurse after two weeks - and I have an appointment with her two days later - we'll review what's happening with weight, bloodsugar, side-effects, and dose...

So there we go. Give me an "S" folks... As I get to playing ball...

Tuesday, June 27, 2006

The "BUT-T" of it

I had an appointment with my Endo today. I wasn't surprised by and was thankful for an incredibly good A1C of 5.7.

BUT. There's always a but, isn't there?

I've only lost 6 lbs on the incredibly rigid diet I've been on for the past three months. I'm frustrated. I'm eating three small meals (read: 15-25 grams of carb in each and LOTS of fruits and vegetables) with two snacks and I'm not eating after 7pm. I've also been exercising, faithfully, at least three times a week. But I'm still not losing much weight - and, on top of that, my LDL is still high (120, which is nowhere near the 70 that my doc says I need to be at to avoid dropping dead of a heart attack at a younger age than I should.) Unfortunately for me, statins caused muscle deterioration and Zettia (drug of choice #2) causes pretty severe stomach cramping and other gastrointestinal issues.

There was much discussion. I could tolerate severe stomach cramping and other gastrointestinal issues if it meant I could potentially avoid a heart attack, right? So maybe I go back on the Zettia, along with the Welchol (another cholesterol med from a different family) I'm already on.

Well, the bottom line is, to avoid these kinds of alternatives, I need to drop the 30 or 40 extra pounds that are probably contributing to the high levels of LDL in my blood.

More discussion with the doc.

Maybe I just starve myself... Or maybe I sacrifice my good control to lose some weight.

As you might imagine, he rolled his eyes at some of these suggestions.

Finally, I asked, what about Symlin? And he said, actually that might be a very good option.

But I have zero problems with insulin sensitivity and my post-prandial sugars are well-controlled, I said.

But we both know that the drug is being abused as a weight loss drug in the diabetes-world, he countered.

I don't want to ABUSE a drug, I said, especially given my history.

If we use it properly, it will simply reduce your insulin needs and have the desired effect of weight loss, he said.

Hmmmm... I think I'd like to give it a go. I said. And I meant it.

I see his nurse on Thursday for my Symlin start. I'll certainly post here about it.

I'm very nervous for a number of reasons. With a history of eating disorder - what if this drug becomes a problem? What if I can't tolerate the nausea? What if it simply doesn't work - what if I'm just destined to be too fat for my own good? What if I just buckled down and tried to lose the weight through continued diet/exercise efforts? Is this just plain lazy?

Given that nothing else has helped - medicine for my thyroid, making BIG adjustments to my diet and exercise routines, getting in tight control while avoiding too many low bloodsugars... I'm feeling like this is my only option short of falling back into destructive patterns of behavior, you know? But it's a scary option.

My doc and I marvelled today that he and I rarely discuss my diabetes - outside of downloading and reviewing my bloodsugars and making tiny, tiny adjustments. We always talk about the other genetic/lifestyle issues that diabetes makes SO dangerous - and that I struggle with as much, if not more, than the disease itself.

More later.

Signing off from fat-land - Yours Truly, Chubby

PS (My sign off is just me being snarky, nothing more. Please don't read any mental health issues into it. I'm just frustrated - and my best reaction is to make jokes about it.)

Sunday, June 25, 2006

Today

Too many days thinking
Worrying
Taking my time and giving my all
And hoping

Too many times
Forgetting
Minutes and hours lost in a woozy wave
And resurfacing

Too much of my life
Working
Against and with a partner? I can't see
And managing

Too often
Cursing
The uncertainty, the unpredictability, the nonsense
And hating

Too long
Knowing
That I can only do so much
And living

Today is my Anniversary. 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. That debate has certainly been had around the OC -- you know, "the would you choose not to have been diagnosed" one -- I just can't help feeling that, even with the lessons I've learned, this is an Anniversary that I certainly would rather not be marking.

Friday, June 02, 2006

Quick Update

Thank you for all of your warm wishes and prayers!

Daniel's two surgeries are completed. Next week, he'll be fitted for contact lenses designed for infant's eyes. Can you imagine? Contacts for an infant? The whole idea scares me quite a bit. As usual though, my brother is taking it in stride. The docs have warned that the baby may still have some serious vision trouble in the next few years -- they've described that his vision will most likely be akin to the way that someone without his condition would see underwater. But he'll be able to see and that's what counts.

I'd ask for your continued thoughts/prayers as we navigate the next few weeks.

Thursday, May 18, 2006

Worry and a Request

My brother and sister-in-law found out yesterday that their one month old son - my nephew - Daniel - has severe cataracts in both of his eyes.

The condition is rare, but treatable. They'll perform a surgery to remove the faulty lenses, but will be unable to replace them with the artificial lenses as happens with cataract surgery in adults. Apparently, infants have a greater tendency to reject the articial lenses. For the first several years of his life, he'll wear some sort of corrective lenses and he'll face surgery to remove scar tissue and replace the lens somewhere along the way. The first surgeries are scheduled for next Monday -- and if all goes well, the following Tuesday.

I have a great deal of respect for my younger brother - he is handling the situation, and his concern, with his usual calm, controlled, and positive attitude. This is of great help to his wife, her parents, and my parents who are all, understandably, beside themselves with worry.

I am asking for your help in sending some good energy our family's way. If you pray, we'd appreciate your prayers, if you don't, we're grateful for your positive thoughts and meditations.

Friday, May 12, 2006

More interview answers

Ack! I've fallen into the trap... Again, if you'd like to be interviewed, let me know. But, my new rule is that I shall not reinterview.

Kerri's questions:

1. Name two things you could do as a child but you can’t do now. Why don’t you do those things as an adult?

When I was a kid, I fully enjoyed running around naked. I have sort of funny proof, a recording which, my father, in his efforts to document my most embarrassing moments, transferred from Super 8 to DVD for everyone's viewing pleasure. The DVD shows a few hundred people at a family pig roast. The BBQ pit is flaming, there are kids playing ball in a field, moms and dads eating and drinking beer... And then you see me -- a little girl of maybe 4 running, stark naked, through the frame. Next, the camera shudders and shakes and you see my father in plaid shorts and a white t-shirt take off me, clearly displeased. Finally, you see my mother -- doing everything she can to stifle her grin, stepping into the frame carrying my sundress. My father does finally catch up with me and my parents dress me again. It's not the only documentation of my nudist habits. To be honest, I'd be happy to live my life naked. Alas, if I did the same thing at a cook out today people would be horrified and I'd get arrested.

I was also incredibly flexible and bouncy when I was younger. I could perform front and back handsprings, front flips with no hands, and I could do all three splits. I can still manage one split. The rest has been lost to my age -- and injuries. A broken wrist robbed me of the ability to do any kind of handspring. Last but not least, my fear of hurting something else makes it impossible for me to even attempt a handless front flip.

2. Martians have invaded your house and are demanding to be taken to your leader. Who would you take them to and why?

I'd take them next door to my neighbor Gertrude.

She's 95 years old. She's the oldest person that I know -- as a result, she has the most experience. She's lived through two World Wars, Viet Nam, Korea, the Depression, countless presidencies. She has voted in every election, including local elections, since the early 1940s.

She's been dirt poor. She worked until she was 75 and her husband got sick. She has faced and beaten cancer twice. She's had a child stillborn. She lost her father to suicide, her mother to a heart attack and all of her four sisters and brothers. She has known joy, love, pain, grief. She is also incredibly honest and not shy about sharing her point of view.

I believe that our world's true leaders are people like Gertrude -- people who have worked for everything they have, who've weathered the best and the worst of times, who remember what it was like to do without, to sacrifice, to fight, and who are candid in expressing their opinions and their emotions.

3. Fast Forward: You’re 82 years old. Someone asks you what life was like when you were 32. What do you tell them?

The World was scary when I was 32, but it was also wonderful. I lived with the love of my life, Bob, in a little house in Seekonk; we had a great cat named Rosie who talked and drank water from the sink. Bob played in a rock-n-roll band called The McGunks. I worked raising money for various organizations -- changing the world a little bit at a time. I felt pretty strongly the world needed changing.

In America, we'd weathered some rough times. Our president was completely ineffective, we were in the midst of one of the wars in Iraq, and at home, the Congress and President seemed to propose or pass frightening legislation everyday -- making cuts in programs that couldn't afford it, trying to take the easy way out of problems like the lack of healthcare and insurance and the depleting of social security funds and pushing policies that further marginalized communities who were already getting the short end of the stick.

Here and overseas, the potential of terrorist attacks loomed in the minds of everyone.

Oh, and I lived with diabetes back then. Of course, you know they cured that a long time ago. But then, I wore an insulin pump -- the latest in a line of new technologies that helped people to get good control of the disease and delay or prevent the onset of complications. I still test my bloodsugar occassionally, but that certainly beats the eight to fourteen times that were required when I relied on synthetic insulin.

I'll tell you more some other time. Right now, I'm going to have some tea and sit out on the porch in the sunlight.

4. What scares you to the very core?

Failure and the possiblity of losing my eyesight.

Failure covers a number of areas. My diabetes, my job, my relationships... I hate the idea that I might screw something up. I hate the idea of growing old and having nothing to show for it or having only a pile of regret to show for it.

The eyesight business stems mostly from the diabetes. This possible complication scares the crap out of me, because I consider sight my most important sense.

5. Why do you blog?

I blog to be heard. I blog because I think my perspective might help someone, might be valuable. I blog because I love to write and I think I'm pretty good at it. And, I blog because I value the community that comes along with blogging.

Kassie's questions:

1. You have $1000, 1 hour shopping spree. Where would you go, and what would you buy?

At the moment, I am obsessed with redecorating the house Bob and I are moving into this summer. So, I would first go to Home Depot and buy the paint we need, the supplies to paint with, and the hardware for the cabinets we're refinishing.

Then, I'd head to Linens and Things or another place for bedding/curtains and buy all new sheets, comforters, pillows, duvets and covers -- oh, and curtains and curtain rods and shower curtains and shower curtain rod.

Last, I'd head to Ikea and spend whatever was left on odds and ends and possibly furniture (it's cheap there.)

2. How would you describe a low in 10 words or less?

Drowning in confusion, my body numbs, later I don't remember.

3. Where would you most like to visit?

I would very much love to visit Ireland and Scotland again. There are no more welcoming places in the world for me. The people, the land, the castles and buildings, the history, the artwork, the wind and the rain and the shady sunlight. I miss them, even though I've only known them for a short time.

4. If you had 2 uninterrupted minutes to speak with the President, what would you say?

To be honest, I'd be reluctant to meet with the current President. I think it would be a complete waste of my time. It's not just that the man is not very bright (I mean, he is the "decider" right?), it's that I think his mind is as closed to new ideas, differing perspectives and opinions, and alternative ways of thinking as a human's mind can be. I would probably ask for two interrupted minutes with someone in power who might actually listen and care.

Having said that, if there was no other option, I'd take the two minutes to share as much as I could of my perspective on stem cell research and the importance of medical care for all people (I'd do everything I could to make him *hear* that people's lives are affected by his decisions and that these issues are of vital importance.)

5. You're in charge at Ben & Jerry's for the day: what flavor ice cream do you invent?

Chocoalmondzilla. That is, vanilla ice cream with chocolate sauce and both white and milk chocolate covered almonds.

Thursday, May 11, 2006

Score One for the Team

Senate bill #1955 died today on a procedural vote.

In no small part, I'm sure, because of the efforts of the ADA, the JDRF, Planned Parenthood and other advocacy non-profits across the United States. Not to mention Kassie, Kerri, Sandra, Shannon, Julia, and others around the OC and outside of it.

Wednesday, May 03, 2006

s 1955 Today!

Please head over to Kassie's blog today for information about s 1955, it is vital that our community -- and others -- oppose this Bill in every way possible!

It's going to be close and the consequences of its passing would be dire.


Noncompliant on s 1955 May 3, 2006

Thursday, April 13, 2006

You Know Why?

Chicken Thigh.

I am more aware of my pump site today than I have been in the entire time I've worn a pump. The connector sits on my thigh, a white island in the sea of peachy skin that is my thigh. It doesn't hurt -- in fact, there's no discomfort whatsoever -- but it's more *there* than is usual.



I have always been a stomach and butt girl when it's come to my diabetes. For years, I insisted on giving my shots in those two areas -- and those two areas alone. My mother begged, pleaded, and bribed me into trying my arms and legs and hips, but when I did use them, it was infrequently and always very trying. I would work myself into a frenzy worrying about how much it might hurt, how the bruises might look, how much more the insulin might sting. So, naturally, when I got my pump, I returned to the areas that were most comfortable and over the past several years my poor stomach and butt have become a field of red dots that never seem to go away.

Then Julia posted this about her daughter and the need to try a new site. I guess it is both an advantage and a disadvantage to have one's own trials with diabetes, and one's own fears and worries about trying new things around the disease, posted on the internet. An advantage because you must realize that you're not alone when you read about your own misgivings in someone else's words. A disadvantage, because, if you're anything like me, you feel more compelled to take action when someone points out that the problem that you've been fooling yourself into thinking is really no problem at all is an issue that you must address.

Last night, I put my very first pump site into my thigh. I will admit that I worked myself into the usual frenzy, worrying about hitting something and hurting myself and stinging insulin -- and worrying about all the pump issues accompanying this new site -- Am I going to pull it out? Will this pose a problem getting dressed? Am I going to drop my pump in the toilet when I try to go to the bathroom? What about the gym?

My mind raced as I pressed the needle against my thigh and took a good deep breath. I was shocked at the lack of discomfort -- at the absence of pain as I pushed the needle through and secured the connector to my skin. And there was no extra insulin sting when I filled the cannula and when I gave my first bolus through the site. I slept through the night without pulling the site free and have successfully maneuvered the bathroom process without any floating pump issues.

Goofy as this probably sounds, I felt more proud of myself (related to my diabetes) today than I have in quite a long time. Once again, I muscled through anxiety and fear and I came out ahead of this disease.

I surprised myself... You know why?



Chicken Thigh.

What have you read?

A Book Meme from the OC. My appetite for books is actually showing through on this one...

Instructions: Bold the ones you've read. Italicize the ones you've been wanting/might like to read. ??Place question marks by any titles/authors you've never heard of?? Plus I'm adding this, as Turtlebella noted that the choice of books by each author is a mite idiosyncratic: put an asterisk if you've read something else by the same author.

Allcott, Louisa May Little Women
Allende, Isabel The House of Spirits
Angelou, Maya I Know Why the Caged Bird Sings
Atwood, Margaret Cat's Eye

Austen, Jane Emma*
Bambara, Toni Cade Salt Eaters?
Barnes, Djuna Nightwoodde?
Beauvoir, Simone The Second Sex
Blume, Judy Are You There God? It's Me Margaret
Burnett, Frances The Secret Garden
Bronte, Charlotte Jane Eyre
Bronte, Emily Wuthering Heights
Buck, Pearl S. The Good Earth
Byatt, A.S. Possession
Cather, Willa My Antonia*
Chopin, Kate The Awakening
Christie, Agatha Murder on the Orient Express
Cisneros, Sandra The House on Mango Street?
Clinton, Hillary Rodham Living History
Cooper, Anna Julia A Voice From the South
Danticat, Edwidge Breath, Eyes, Memory?
Davis, Angela Women, Culture, and Politics
Desai, Anita Clear Light of Day?
Dickinson, Emily Collected Poems
Duncan, Lois I Know What You Did Last Summer
DuMaurier, Daphne Rebecca
Eliot, George Middlemarch
Emecheta, Buchi Second Class Citizen?
Erdrich, Louise Tracks
Esquivel, Laura Like Water for Chocolate
Flagg, Fannie Fried Green Tomatoes at the Whistle Stop Cafe
Friedan, Betty The Feminine Mystique
Frank, Anne Diary of a Young Girl
Gilman, Charlotte Perkins The Yellow Wallpaper
Gordimer, Nadine July's People?
Grafton, Sue S is for Silence
Hamilton, Edith Mythology?
Highsmith, Patricia The Talented Mr. Ripley
Hooks, Bell Bone Black
Hurston, Zora Neale Tracks on the Road
Jacobs, Harriet Incidents in the Life of a Slave Girl
Jackson, Helen Hunt Ramona
Jackson, Shirley The Haunting of Hill House
Jong, Erica Fear of Flying*
Keene, Carolyn The Nancy Drew Mysteries
Kidd, Sue Monk The Secret Life of Bees
Kincaid, Jamaica Lucy?
Kingsolver, Barbara The Poisonwood Bible
Kingston, Maxine Hong The Woman Warrior
Larsen, Nella Passing
L'Engle, Madeleine A Wrinkle in Time
Le Guin, Ursula K. The Left Hand of Darkness?
Lee, Harper To Kill a Mockingbird
Lessing, Doris The Golden Notebook
Lively, Penelope Moon Tiger?
Lorde, Audre The Cancer Journals
Martin, Ann M. The Babysitters Club Series
McCullers, Carson The Member of the Wedding?
McMillan, Terry Disappearing Acts
Markandaya, Kamala Nectar in a Sieve?
Marshall, Paule Brown Girl, Brownstones
Mitchell, Margaret Gone with the Wind
Montgomery, Lucy Maudâ Anne of Green Gables
Morgan, Joan When Chickenheads Come Home to Roost?
Morrison, Toni Song of Solomon*
Murasaki, Lady Shikibu The Tale of Genji?
Munro, Alice Lives of Girls and Women
Murdoch, Iris Severed Head
Naylor, Gloria Mama Day
Niffenegger, Audrey The Time Traveller's Wife
Oates, Joyce Carol We Were the Mulvaneys*
O'Connor, Flannery A Good Man is Hard to Find
Piercy, Marge Woman on the Edge of Time?
Picoult, Jodi My Sister's Keeper
Plath, Sylvia The Bell Jar
Porter, Katharine Anne Ship of Fools
Proulx, E. Annie The Shipping News
Rand, Ayn The Fountainhead
Ray, Rachel 365: No Repeats?
Rhys, Jean Wide Sargasso Sea
Robinson, Marilynne Housekeeping?
Rocha, Sharon For Laci
Sebold, Alice The Lovely Bones
Shelley, Mary Frankenstein
Smith, Betty A Tree Grows in Brooklyn
Smith, Zadie White Teeth
Spark, Muriel The Prime of Miss Jean Brodie
Spyri, Johanna Heidi?
Strout, Elizabeth Amy and Isabelle
Steel, Danielle The House
Tan, Amy The Joy Luck Club
Tannen, Deborah You're Wearing That?
Ulrich, Laurel A Midwife's Tale
Urquhart, Jane Away
Walker, Alice The Temple of My Familiar
Welty, Eudora One Writer's Beginnings
Wharton, Edith Age of Innocence
Wilder, Laura Ingalls Little House in the Big Woods
Wollstonecraft, Mary A Vindication of the Rights of Women
Woolf, Virginia A Room of One's Own*