Some updates for you - Wedding, New Pump, Family, Things...

The wedding was good. Lots of fun. There were several real freak-out moments by our bride in the three days preceding – but when the wedding actually started, she was calm – collected – and had a great day.

I have made a determination about brides in general, though. This is a photo of a bride in its natural habitat before its wedding:



I challenge you to defy this statement.

Oh and I made the scene in my very satiny dress, feeling much like a beached whale. I guess that is the way of the bridesmaid sometimes though, isn’t it?



Between 11 am (when the wedding started) and 3:30 am (when must of us finally when back to our respective hotel rooms) I downed more Pearl Harbors than I really needed to and then proceeded into a bottle of Boone’s Farm.



The hours between 4:00 am and 7:00 am were not nearly as pleasant at the one’s before. Joy!

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In pump news. I am squarely on the fence with my love for my new pump – and my annoyance with some of its quirks. The food database has been enormously helpful, the screen is cool, and the size of the thing makes it easy to hide in my bra – something I could not do with my Cozmo. The extra button pushing can be a pain in the butt. Not so bad.

But I have now cancelled four boluses without knowing it until an hour later when my pump has vibrated angrily against my hip. With other pumps – you have to confirm you want to cancel before the bolus is cancelled – with this one – it’s just one button push – so if I hit it just right – it cancels. It apparently alarms to let me know – and I don’t know why I’m not hearing the alarms – I’m just not. At one hour, if the user hasn’t confirmed that they know the pump has cancelled the bolus, it starts to vibrate – so at least I’m catching it then.

So these things are taking some getting used to. I am anxious to receive my new software so that I can really personalize my new gadget – make the food DB even more useable – set an alarm that might actually register with me.

The great news is, bloodsugars have been fairly stable. My meter average is 137 mg/dl. The past two days have been a nice, smooth ride. Today looked like my diabetic dream:

7 am – 109
10 am – 145
12 noon – 135
2 pm – 116
5 pm – 89

I have had fewer large swings in the past week – especially after meals. So maybe my new little buddy has something to do with that. Or maybe it’s just “new pump theory –“ You know? You get a new pump with new features and you’re just all over it – all over diabetes – all high (or not high) on sugars and carb counting and such… New pump=Temporary improvement in control??

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My nephew Daniel turned one year old this week. He simply could not be cuter. We saw him at his birthday party. Daniel and our family could still use your prayers. His eyesight appears to have improved considerably, but he has some developmental delays – with regard to his movement and leg and neck muscle strength really need to improve. They are working with early intervention – and he’s making progress. But this little one’s been through so much already – 3 surgeries in just his first year of life… So any good thoughts you can send would be very much appreciated.

My brother Eric also had surgery this week. I shall not discuss it in any detail here as the procedure was just gross… But he’s home and recovering – so think well for him – pretty please!

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In closing, my house is a mess. I know, I know – boring. But has anyone else noticed how time just seems to run right away on us? I keep thinking “Oh I’ll do it this weekend” Then something crops up, someone needs a favor, I have to work AGAIN… And my house is just a mess. So tonight – on a Friday – I am going to Target and buying some new cleaning supplies – hoping that “new pump theory” might apply the same way to cleaning; New cleaning gadgets = Temporary improvement in the cleanliness of the house? Hopefully this mad hypothesis isn’t such weird science. Hell – it makes sense to me….



Not my house - but I wish it was!!! Hoola Hoops all around and undies - awesome!

Have a Nice Weekend...

Off to wear the dress - sans tan...

We've got three days of thing leading up to Saturday - beginning tonight. Wish me luck in my efforts as a bridesmaid...

Exciting news, tidbits, and a query

First - the news. I got my new pump!!!!! And even though all of the manuals and other things from Animas say I should not go ahead with pumping on insulin without official pump training – I couldn’t help myself.

My initial review: there are definitely a few more steps to accomplish some things compared with the Cozmo – but the screen is AMAZING, the food database is probably one of the coolest diabetes gizmos I’ve ever seen, and I love that mine was set to play the Mexican Hate Dance Song (I kid you not) as an alarm when I first got it.

More to come regarding the new gadget… Later.

Tidbits: This weekend should be fun. Although I have to work tomorrow, I’m hoping to get in some time in the yard in the morning. We’ve got a huge yard in our new home – and this will be our first spring and summer there – so I’ll be fixing up the flower boxes, using the rider mower that Bob’s granddad left us to mow our expansive lawn, and painting the farmyard style fence and the front porch over the next few weeks. I’d love to get started tomorrow – I guess we’ll see. On Sunday, Bob and I are going to Westerly, RI and Stonington, CT to just hang around. There’s water, some cool historical sites, and a restaurant he wants to check out there. Mostly, I’ll just enjoy the hour ride there with good music and great conversation and a hopefully sunny day with one of my best friends.

Finally - a confession - and the query... I’ll admit it, sometimes I wish I had a new face. I look in the mirror and realize I hate the size of my nose, and the set of my eyes, and my big horsey-looking teeth. I flash back often to when I was ten and saved about 5 weeks worth of allowance so that I could go to the drugstore and buy some Porcelana Skin Cream to get rid of my freckles. Even now, I’ve not abandoned the idea of some miracle substance being discovered that might rid my face of my sun spots.

This confession to tell you a bit about a woman I work with. She is helping us out with an auction for an event we’re doing this summer. She is frighteningly determined to obtain one item in particular for the auction. She wants to get a plastic surgeon to donate surgery. She told me the other night that she already has her heart set on being the winning bidder for this prize she’s securing. For an instant my mind blinked a “she’s out of her mind…” message… Then I realized, if I were in a similar financial position, maybe I’d not be that different. If I could afford to have my nostrils reshaped, my teeth veneered, the lines around my eyes ironed out – I just might do it…

So here’s the question I have for you – would you have plastic surgery? Is it a definite “yes” or “no” for you – would you absolutely love it or never even consider it? Or would you give it some thought - real thought - if you were in a position to afford it?

Consider this more useless data for my imaginary think-tank.

Poll - Because I'm a freak show

See below for instructions... When you're done here, please mosie over to Bernard's and answer his much more meaningful questions.


If you have diabetes or your child or loved one has diabetes, please tell me, in comment form, what type of diabetes you or they have and what color your or their eyes are. This is for science, people - the science of my curious head...

Thank you in advance.

Jaded?

Boy, the news out of Brazil is pretty amazing, isn’t it? It appears to be more of a boon for my newly diagnosed compadres. But is it more?

Could getting my spleen to create me some new insulin producing cells and then destroying my immune system and rebuilding it be an answer?

Or can you really replace an immune system without the body simply rebuilding itself – with all of its original flaws? The fact that one of these patients “relapsed” after a viral infection tells me that maybe it isn’t just our immune system, but something about our body’s ability to build an immune system that’s flawed.

I think I might be jaded.

I want to hope that this news will mean something in terms of my diabetes in the years to come – but my head and my heart are filled with sheer doubt.

Meanwhile, here in the United States, the Senate is hard at work - and the President is up to his usual tricks on the issue of embryonic stem cell research. This article from the Boston Globe is amazing. You should read it.

For now – I’m going back to work with a bloodsugar of 142 mg/dl and my insulin pump at my hip. Thankful for the brave scientists and moreover for the brave patients that have come before me and paved the way for my disease to be more effectively managed. Thankful also for the brave scientists and the moreover the brave patients studying and being studied as we inch our way toward a cure.

If nothing else, the news out of Brazil gives me a sense that there is more to know about the way my broken pancreas, issue-filled metabolic make up and flawed immune system work – and that there are people willing to theorize, to dream, to hope, to take a chance – and to fight to get to the bottom of things.

Maybe I’m not that jaded after all.

News out of Brazil
Stem cell treatment used for diabetes
In Brazil study, patients off insulin
By Karen Kaplan, Los Angeles Times | April 11, 2007

LOS ANGELES -- Researchers have demonstrated for the first time that the progression of Type-1 diabetes can be halted -- and possibly reversed -- by a stem cell transplant that preserves the body's diminishing ability to make insulin, according to a study published today.

The experimental therapy eliminated the need for insulin injections for months or even years in 14 of 15 patients who were recently diagnosed with the disease. One subject, a 30-year-old male, hasn't taken insulin since his stem cell transplant more than three years ago, according to the study in the Journal of the American Medical Association.

The study suggests a new avenue for treating the intractable disease, in which the immune system destroys insulin-producing beta cells in the pancreas. Without insulin, patients can't metabolize sugar and risk developing nerve damage, cardiovascular disease, kidney failure, and blindness.

Patients with Type-1 diabetes typically compensate by monitoring their blood sugar levels every few hours and injecting themselves with insulin as many as five times a day.

After the stem cell treatment, "patients are absolutely medication-free; they're off insulin," said Dr. Richard Burt, chief of the division of immunotherapy at Northwestern University's Feinberg School of Medicine and senior author of the study.

The strategy is similar to an approach showing some success in treating other immune-system disorders, such as rheumatoid arthritis, lupus, and multiple sclerosis.

"We all realize that without addressing the problem at the level of the immune system, we'll never really beat Type-1 diabetes," said Dr. Francisco Prieto, who treats diabetics in Elk Grove, Calif., and wasn't involved in the study. "This is very encouraging work."

Burt and his colleagues cautioned that they don't yet know whether the fix is permanent and, if it is not, how long it will last. One of the subjects was insulin-free for one year but then relapsed after a respiratory viral infection, said lead author Dr. Julio Voltarelli, associate professor at Ribeirao Preto Medical School at the University of Sao Paulo in Brazil.

The researchers also cautioned that the process is not without risk, with patients vulnerable to infection during part of the therapy.

But other doctors said that even if the benefits of the therapy are temporary, the research provides valuable insight into the mechanism behind the disease.

The Juvenile Diabetes Research Foundation in New York estimates that as many as 3 million Americans have Type-1 diabetes, with between 30,000 and 35,000 new cases diagnosed each year.

The age of onset is considerably younger than for Type-2 diabetes patients, who can still make insulin but can't use it efficiently.

The stem cell approach mirrors the bone marrow transplants used to treat patients with certain cancers and blood diseases. The idea is to wipe out the faulty immune system and replace it .
In the study, 15 Brazilian patients were treated within a few months of their diagnosis, before their immune systems had the chance to eradicate all of their insulin-producing cells.
The study was conducted in Brazil because of Voltarelli's interest in the experiment. It was funded by the Brazilian Ministry of Health and other sources.
The patients, who ranged in age from 14 to 31, were treated with drugs and hormones that prompted the body to produce hematopoietic stem cells and send them from the bone marrow into the bloodstream, where they were extracted by a special machine.

About two weeks later, the patients checked into the hospital and received chemotherapy and other drugs to kill off their immune systems over five days.

After a day of rest, they were infused with their own hematopoietic stem cells, which took about eight to 12 days to establish a new immune system. In the interim, they were given antibiotics to protect against infections.

The treatment had no effect on one patient, whose disease had already progressed too far, doctors decided. Of the remaining 14 patients, 12 were able to stop taking insulin shortly after their transplants. Altogether, five patients have not needed insulin injections for at least 23 months, and two have been
insulin-free for more than 18 months.

Even if patients continue to require insulin shots, the treatment should be considered a success if it halts the destruction of beta cells, said Dr. Jay Skyler, with the Diabetes Research Institute at the University of Miami Miller School of Medicine, who wrote an editorial accompanying the study.

Vote

Honestly - everytime I read an article like the one that follows, my heart just sinks. But then I think - a sinking heart does just that - and really what good is my disappointment if it festers as I stand by? There are things that I can and will do, especially given the promise of change that the next 18 months hold. I would encourage you to examine the candidates carefully as we head into the next presidential election - I'm not going to tell anyone who I think they should vote for, BUT I'll continue to remind myself - and others - that to vote is to exercise one of our most important privileges. And to vote with the appropriate level of knowledge around what your elected officials would do in situations that you think are important to you, your family, and your country is vital.

WASHINGTON - President Bush will again veto a bill to subsidize stem cell research using human embryos, but would sign an alternative that permits public funding for studies on embryos incapable of developing into fetuses, the White House said Tuesday.

Both bills are moving toward a Senate vote this week with a debate over a budding science that some researchers say could cure diseases that afflict millions of people.

The bill Bush opposes, sponsored by Senate Majority Leader Harry Reid (news, bio, voting record), D-Nev., would lift the president's 2001 ban on federal funding for any new embryonic stem cell studies.

Bush contends the measure crosses an ethical line because human embryos are destroyed in the process of extracting the stem cells, material that can morph into any tissue in the body and theoretically replace or heal damaged organs.

"The administration believes that research on alternative sources of stem cells is extremely promising and provides robust opportunities to advance science without compelling American taxpayers to participate in ongoing destruction of human embryos," the White House said in a statement.

If the measure passes both houses and reaches Bush's desk, "he would veto the bill," the statement said.

On the other hand, an alternative sponsored by Sen. Johnny Isakson (news, bio, voting record), R-Ga., would encourage research that does not harm budding human life, the administration said. That measure would direct taxpayer money to stem cell research on fertilized embryos that have passed the window of time in which they are capable of developing into a human being.

"The administration does not believe science and ethics need be at odds," the statement said.

The Isakson bill would also prohibit taxpayer money from being spent on the creation of embryos for research purposes, a provision some scientists strongly oppose.

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The Reid bill is S. 5. The Isakson bill is S. 30.

TEXTING

In a recent training for work, I was reminded of how humiliating diabetes can sometimes be. About an hour into “Facilitating Meetings,” I started to feel like my bloodsugar might be off. I popped out my meter – being sure that the meeting leader saw me as I tested.

253 mg/dl… Hmmm… I pull out my pump – again being sure that the pump tubing was showing. Beep, beep, beep – dialing in the correction bolus.

“Excuse me, NICOLE – you need to stop TEXTING now.”

I’m taken aback. “Um…” I utter.

The meeting leader interrupts “Now. Please stop TEXTING.”

My face is scarlet as I croak “I’m not TEXTING…” Placing the same enunciation on the last word as the leader had. “I’m –“ I only get half of the m out…

“It sure looks like you’re texting there. Care to share what you ARE doing???”

I’m not able to curb my aggravation as I say “Not particularly. But I guess I don’t have much choice, I’m GIVING INSULIN for DIABETES.”

“Oh. Well can you mute that thing? Does it have a manner mode?”

“No I can’t mute this thing.” My voice is now edging toward out and out angry sounding. And I say this last not because I’ve forgotten how to put my pump on vibrate, but because I want this guy to know he’s being a total jerk. “It’s not a phone.”

By now, I’ve finished bolusing and put my pump back in its pocket. My face is as red as the tip of the white-board marker the leader waves around in his hand. I look up at the leader as he says, almost under his breath “FINISHED?”

“Yeah, I’m finished,” I say.

And the class continues on.

At lunch break, the woman next to me says “I can’t believe he DID that. I just can’t believe it. Are you alright?”

“Sure am,” I say, “this disease can be a pain sometimes.”

“I guess it can.” She says. “He’s lucky you kept your cool, isn’t he?”

“I guess,” I say, “But he won’t be lucky when I contact HR tomorrow.”

“Atta girl!!” She says, smiling at me.

“Atta girl!!” I think as I thank her – my grin wide.

I had a nice conversation with my HR Rep the next day – explaining what had happened. She promised to have a conversation with the trainer, an outside consultant they bring in for workshops like the one I was taking. I felt better having voiced my concerns.

But, man, in those two minutes, I could’ve exploded.

Sure, calling someone out if they’re doing something rude in a meeting is something I’d expect – something I fully support. But not giving a person the chance to explain what they are doing – and then making an issue of the noise it’s causing – even when you know the noise is related to a medical condition is just ridiculous.

Anybody out there had any issues at work related to diabetes or care that needs to happen at inopportune times or people who just don’t seem to understand that what you’re doing isn’t optional?

More Questions

So, I'm obnoxious. But I wanted to do this again, because George's questions to another blogger were so damned good...

1. If you could have your face on a box of breakfast cereal, which one would you choose?
Kix – because it was the first non-sugared cereal I actually liked as a kid. In my opinion, Kix was the diabetic’s dream cereal before insulin pumping and increased numbers of daily injections became the norm. Yummy – not filled with corn syrup – kid tested, Curious Girl approved…



2. Name 5 things that you will do before 2008 that you have never done before (or at least what you would like to do)?
*Stick to an exercise routine
*Try to write something I might get paid for
*Take a 2 week vacation during which I actually vacation – ie: don’t check emails, phone messages, etc.
*Touch a sleeping lion
*Keep my house spotless (this is the least likely of the 5 to actually happen)

3. If a cartoon character came to life and had to live with you forever, which one would be your pick and why?
Probably the Great Gazoo. Come on – who wouldn’t want to tap the brain of a power-tripping genius alien who’s visited both the future – and prehistoric Bedrock? Plus, he’s dippy, but he’s cute.


4. If you could choose one year of your life to live over again, which one would you choose?
I don’t think I’d live a year over again at all. Knowing the things I know now, I’d probably change things, thus royally screwing them up and altering the destinies of myself and others. OK, that’s probably a bit egocentric to think my life could have any power over any kind of destiny. I guess, if I had to choose, I’d go back to the year I met Bob – or any of the years since. My life has pretty much been excellent since I ran into that man.

5. If you could give your life to change something in the world, would you and what would you change?
I’d die to make people less resentful, less angry, less poisonous. It is my true belief that most of our worldly dilemmas come not from the things that are part of our natural existence – things like disease and death – but from some people’s inability to deal with them effectively. Too many people harbor grudges against others and anger at themselves and those around them (usually stemming from imagined failures or wrongs) – these things are like pollutants – they affect all of us. Even if we’re not in the direct line of fire of a person’s anger – the sheer karmic negativity gets inside of us and spurns more of the same.

I guess I could’ve said I’d cure something – or I’d stop war – or something else that sounds really earth shattering. But the truth is, I think some of us need to suffer – need to have diseases and in the end – ALL of us need to die. If there was something, though, to make us more able to deal with our living and dying and stay more positive – I feel like we wouldn’t have half the trouble we’ve got in our world now.

You want to know WHAT?

Thank you, Julia, for the interview questions.

If you would like to be interviewed, go ahead - leave a comment with your email address and I'll send you some questions...

1. What does blogging do for you?

It helps me to exercise my brain in a way that I don’t get to exercise it at work or in other areas of my life. It gives me a place to vent when I need it. It allows me to make a difference in the lives of others – and it affords me the opportunity to feel my burdens eased by the support of others. It permits me to be a bit self-indulgent and egocentric - and, I guess, a bit selfless and humble all at the same time.

2. Do you have any tattoos? If so, what of and what do they represent? If not, would you?

I have several. There is one on my back; a fairy-looking butterfly stolen from the pages of this book:



It was the first tattoo I ever got. For me it represents who I was at that exact moment in life – someone who lived in the moment, someone who appreciated beauty, someone who was looking for an awakening. In that tattoo I still feel all the uncertainty that was in my heart and my head about who I really was – and what I really wanted out of life. It reminds me that I will always be a work in progress – a changing being – and it brings me back to a point where I relished being just that.

The one on my neck is an AIDS ribbon. I had it done after one of my best high school friends died of AIDS related complications in 1999.

My largest piece is along my clavicles and on my breast plate. It was something I got after my father’s dad passed away. It’s a vine of forget me nots that hold up a claddagh. The claddagh design was drawn by the artist from a ring my grandfather had given me when I was a girl; the forget me nots remind me of his presence in my life – even after he’d left us.

This photos shows it very well:



There is one more that I don’t want to talk about.

3. Is what you do for a living what you'd do if money weren't an issue? If not, what would you rather do?

Yes. I’d either be doing what I’m doing or something very close to it. Of course, if money were no issue – I think I’d like to go back to school – maybe get a Masters Degree and try my hand at teaching philosophy or writing. Ah, but money IS an issue.

4. What is your all-time, number one, desert island favourite book/album/movie?

The book would be The Treasured Writings of Khalil Gibran.

The album would either be Bob’s band The McGunks Here Comes the Shame or Darkbuster’s 22 Songs You’ll Never Want to Hear Again – the final answer would depend on whether Bob was with me on the island or not – if he was, I’d take Darkbuster’s album instead of his.

The movie would be Caddy Shack. (Yeah, I said it.)

5. What's the most money you've ever spent on any one item? (not including a car or house)
Home computer – Digital Camera? It’s a toss up – I think I spent equally on each of these things…

Merrily, Merrily, Merrily, Merrily?

In my dream, I stand by the edge of a giant body of water. It is murky and dark – looking still and rigid and cold against a white-gray sky. For as far as my eye can see, there is just this listless pool pressed hard and straight against the ominous sky. Although this world my slumber has dropped me into is deafeningly silent – the noise in my head pulses and beats and screams. There are voices of those I love and those I once loved – and there are the voices of people I work with and those of people who want something and people who just want me to hear them and there is music and poetry and there are worries and desires and ideas spoken in my own voice.

I try to focus on the water – on the sky – try to find something rippling, something moving, something living – something to help me silence the bleating in my brain. I figure if I can look at something and form some opinions – some thoughts about that thing alone – then I might find some solace from the noise. But there is just this stillness. When I attempt to speak, nothing comes out. The words I want to put out disappear, even as my lips move to make them heard. And then they appear again – a pathetic whisper in the cacophony that is in my head.

I walk along the water – realizing that I am strictly an observer here. There is a line - as distinct as the line that separates the pool from the sky - that keeps my toes from venturing into the pool. The ground is flat and dark brown – and covered in small colored stones. I can feel the stones beneath my feet – hard, rough globes pressing into my soles – but when I reach down to pick one up, I see they’re like paintings made to look like the real thing – as ungraspable as smoke. I suppose a stone hitting the water would disturb the utter stillness – and its wet plunk as it rippled the pool surface would certainly make noise that I’d be able to hear – instead of noise that I can only feel.

It is at this point in the dream that I come to know that I’m in a perpetual state of standing. Somehow my knees don’t work in the way they should and sitting is impossible. I also understand that if I stay in this place, my pacing along the line between earth and water is a true constant. I simply cannot stop myself from moving.

The voices in my brain are getting louder and louder, like children from a family of ten, all trying to be heard above their siblings – all succeeding only in making a clatter from which I can extract no sense. I can’t seem to focus on just one voice – because there is such urgency – such need – such panic in every single one of them. How can I not listen to them all? How can I be the judge of what fear, what anxiety, what horrible happening should take priority? And how can I satisfy any of them when all I can hear is the sum of their – and my – personal agonies – and not their – and my – individual – personal - concerns? I am starting to panic.

And I wake up.

I am thankful to be in my room. There is outside noise here. The cat purring near my face, the alarm sounding its wake up call, my love breathing soft, the birds outside of the window. The noise in my head is still there – and I know I’ve still got to figure out how to sort things out – but I am grateful for the "distraction" - the joyful, soothing noise - of my everyday life.