Tuesday, February 28, 2012


I don't want to write this post. In my past life, I wouldn't have written it. But for some reason, I know that I have to. For some reason, Ryan and I know it is important that you all know what is going on.

So I will do what I always do. I will write. Whether I like it, or not.

Before I get to the crap of the matter, you should know that my husband is the most important person in my life. He is honestly in every capacity of the word...my "best friend." My boys are important to me, they are my heart and soul...but they will find their true loves one day, and in turn be complete as I am. Ryan is my person. He is so much better than me, and his love is my greatest treasure.

I have always known that what I have with Ryan is rare, and special.

There isn't a day that goes by that I don't think to myself how lucky I am to have him.

We are one.

So why this is happening to US, I do not know. I can only believe that there is a reason. There is a greater plan that my eyes can't see yet.

Ryan has cancer.

Or maybe, he still has cancer.

I didn't really write about it a few years ago, but Ryan had Melanoma. It was one mole that looked like a pencil eraser, and we only had it removed because it kinda grossed me out. It wasn't black or asymmetrical or anything when we had it removed. The doctor sent it into pathology, just to make sure it was nothing. But it wasn't nothing. It was a big something.

Surgery and chemotherapy. It was a long haul, but we thought it was gone.

A few days ago we found out it isn't gone. In fact it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It's pretty much the worst kind of cancer there is.

But that is neither here nor there right now. Right now we are focused on moving forward and getting things done.

He begins whole brain radiation on Thursday. He will have this every day for a few weeks. He'll lose his hair and be tired, but we are hoping for lean side effects.

The next step will be more taxing. The original specimen of his cancer removed a few years ago is now being analyzed at UCSF. Depending on the mutation it has, we will form a medicine treatment plan. Chemo or immunotherapy. Both of the medicines that are on the table have been approved by the FDA in just the past couple months. We feel completely blessed, and don't feel it is an accident that we were diagnosed this moment in time. If we found out only months ago, these amazing therapies would not have been available.

Why am I telling you this? This is so personal, and usually this would be just too close to home to share with all of the world. But Ryan and I have the strongest impression that we need to share this with everyone. We NEED your prayers.

To be honest, we need a miracle.

We have set aside this Sunday, March 4th for fasting and prayer on Ryan's behalf. Our hope is that people all across the world, every denomination and belief, will pray for a miracle for Ryan. If you feel impressed, please ask your family and friends to participate. If you belong to any prayer groups, or if you have a close church family you can ask to join in, we would appreciate it more than you'll ever know.

God will provide. Let us bombard heaven with our pleas.

Facebook has already exploded with support. My inbox is full, My IM's are never ending, and my status updates are too numerous to keep up with.

Other D Mama friends have set up a facebook page for me. You can find it here. I'll post updates there. Please share the page with your family and friends. The more prayers the better. I can't help but feel deep down that this is true.

There is the craptastic truth. All of it. Uncensored.

How are we? We are on the roller coaster. We are laughing one minute, delirious with tears the next. But we FEEL the prayers. And our hope grows stronger by the minute.

Somehow we know we will be ok.


It won't be easy. But the craziness that lays in front of us will be worth it in the end. We stand ready to receive that miracle.

Pray friends. Just pray.

Friday, February 24, 2012

Luck, Scientific Genius, or Black Magic Wonder Woman?

An experiment? A Hypothesis? Call it what you may. But last night I tried a little somethin' somethin' out and got some pretty remarkable results.

You be the judge.

My feet drug as I slumped to the boys' rooms at 12:30am. My head was heavy, my limbs were rubbery and my head was filled with uncertainty.

As I checked the boys I spontaneously tried some black magic.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Now many of you might think that my muttering was all for not. But I present you with the hard facts:

It worked 33% of the time. 1 out of 3 times. THAT is nothing to sneeze at people!

Those of you thinking I've lost it a bit might want to dispute the many other "scientific/black magic hypotheses" I have made throughout the years.

Like the fact that if the boys have a banana for snack at school...they only have a 30% chance of going low by lunch. No. I don't have the hard numbers to back that one up, but I've got something better. My gut.

One might think it is crazy to hold my breath through the tunnel near Sausalito whilst on the way to the endo's office...making a wish that all the boys A1C's will be better than I think they are.

Well here's a shocker for you. IT WORKS! Every time! Boo YEAH! Of course, I always THINK they'll be in the teens, but that is neither here nor there.

Some of you might think I'm off my rocker that when the phone rings I say a little prayer that it is a telemarketer. Better someone selling me solar panels than a boy calling me from school with a problem blood sugar, I always say.

Prayer works. Telemarketers are coming out of my ears around here!

Luck? I think not!

Why does bolusing 100 carbs, (120 if there is ice cream involved,) at the Chinese all you can eat buffet work ALMOST every single gosh darn time? I don't know. It just does.

The results are practically irrefutable.

I got a million of these folks! Grey shirts on Wednesday, Waffles on Mondays...it goes on and on!

Sure, what works for me might not work for you.

(Ok, what works for me PROBABLY WON'T work for you.)

But as we ALL know...

Your black magic may vary.  It's a scientific fact.

Thursday, February 23, 2012

Go Forth... And Pursue

I love walking outdoors... in full Winter.

The cold, brisk air, cupping my cheeks; biting my lips... running it's fingers through my hair. A reminder that I need a warm embrace; a cup of hot Joe, or just... a new sweater. A reminder that I am made of flesh, and blood... of pulsing vessels: "I'm alive!" -- my body screams.

Winter is a painful lover I've come to cherish... and there are few things I love more than Winter.

You wouldn't know it by its beginning phases, though. Uncomfortable, and annoying. It often takes me great pains to get used to falling temperatures. The cumbersomeness of putting on so many clothes -- even remembering to do so. Keeping track of the &^%@! scarf and gloves; the hat. Never forget the silly hat. (I just NEVER looked good in hats. A big, fat, rounded head... hats have always been a difficult fit.) And if I had a choice, I'd just as soon avoid embracing Winter...

Oddly enough, this is how I feel about much of my life. There are just a lot of things which I hate the idea of them a lot more so than the actual, concrete form of them; the true reality of them. I'm not sure where this all began... perhaps in my father's off putting "We'll do it next week" remarks.

There were a lot of things which were always put off until "next week..." Oil painting lessons, photography lessons, writing lessons, flying lessons, trips to national parks, concerts, galleries, coupled with a few entire dismissals here and there, for volunteering to help others during national disasters, or the holidays... "We'll do it next week," he'd say. "This week, I'm busy."

But next week always came, and went; and in fact, the 'next week' never actually came at all. Thus, I missed an important lesson of sorts in my childhood, or perhaps, only learned it part-way.

"Courage," you see...

Some of us only see courage as people out there, running into burning buildings, dying in wars, or confronting the faces of evil.

But courage isn't always such a narrow thing. Courage isn't so cut and dried.

There is, a sort of, bolder kind of courage... waiting right here, in your messy living room. A courage that quietly asks "Do you want to be... who you were meant to be? Do you even want to find out? Will you even take the first step? Where are your scarf and mittens?"

As it is, I look around me, and it's a little deflating. Messy room, messy life. I've taken some of these steps before, but who am I (who are any of us, really?) to take them again? I don't just want to keep living in the hear and now, you know... as good and necessary as that is... but also... in the there, and the thereafter.

A Hero in Waiting... is What I am... 
Someone who doesn't just say "Just do it," but "Shut up, and just do it." Shuts out the insecurities, the stupid voices, the figures of the past who never bothered to build her confidence... perhaps because they had none to give. A scared... hero in waiting. Scared of big heights, and big changes, deep feelings, and challenges. Scared to express her big voice -- scared of even this very blog.

But I want to do it... Believe it, you are WORTH doing it.

You are worth...

  • the oil painting lessons;
  • the late blooming college degree;
  • the volunteering sessions at the soup kitchen or the hospice;
  • the trip to the big art gallery... 
  • that book, in your heart, wanting to get written;
  • the family, and the kids...
  • That big love affair NO ONE believed you could be.
You are IT. You are a lot more... than this stupid diabetes disease. You are MAGICAL. You are YOU ... And as the tears just stream down my face, perhaps thinking of my challenges ahead, or perhaps... just realizing I'm the only one to say these things -- to myself, or to you -- I say again... 

You are more than Diabetes; You are MAGICAL. You are YOU. You are worth the investment. And no one is more courageous than YOU. Go forth, and pursue. 

Tuesday, February 21, 2012

And the numbers follow...

The fact that our son M will be a Senior next year has been hitting us hard. Time is flying, and the time that we have to force him to be with us is getting slimmer by the minute. Because of this, we have been making it a priority to go out on family "adventures." A couple times a month we try to go do things our family has never done before. Yesterday our adventuring took us to a couple tourist destinations in San Francisco.

I keep replaying the day back in my mind. It was a whirlwind of fun, and a great family bonding day.

But whether we like it or not, diabetes is part of our family too. That means it got to bond as well.

It occurred to me that every wonderful memory our family has made...numbers are attached to it. Take this picture for instance...

We were on top of Coit Tower, and B and L were running high. I gave them less insulin for breakfast because we had planned to climb 21 stories of stairs to the top. We arrived only to find that the stairs have been closed for quite some time so we had to take the elevator. (I was part horrified, part completely relieved if you can imagine.)

The picture below is our family in China town. Everyone's numbers were AOK by then...but still, they were there in every moment.

And then, when B and L experienced Benihana for the first time...can you guess who was low?

We can run, we can adventure...but we can't hide. The numbers find us. They are a constant swirl of information above us at every moment.

The fact remains though...we had an amazing time as a family. We laughed and shopped and ate like nobody's business...and even after all that Japanese food..the boys went to bed with 112, 130, 117. (That last one was J's. He ate lunch with us, and then later went to an all you can eat Chinese Buffet for dinner with his friends. HOW DOES HE DO IT!!! I almost think he is magic.)

Anyway...we made great memories regardless of the numbers. The smiles were priceless, and the frowns were easily melted away with some fast acting apple juice, kindly comped to us by the bar for L's low.

The memories of the numbers are trumped by the memories of the fun. It is always worth the risk to take a journey away from the home. Maybe diabetes won't play fair...but you can bet your family will overcome and find a way to make it all work out in the end.

Fighting numbers is no different on the fly as it is at home. It is worth the chance.

And definitely worth the memories...

Wednesday, February 15, 2012

It comes naturally.

When we are suffocated with numbers. When we are buried in ratios that make no sense.

It comes naturally for us to rise up above the diabetes smog and find the air we need to keep going.

When our children are burnt out. When they voice their frustrations.

It comes naturally for us to lift them above us, and place them on the pedestal they deserve.

As parents we refuse to let the darkness overtake our children.

As parents of children with diabetes, we take the hurt and we use it as fuel to take that next step.

It is only natural for us to fight.

Because when it comes to our children there is no losing.

There is no surrendering.

Sure, there are times when we think this hole is going to collapse on us.

Sure, there are times when we are sure the sun has forgotten to shine.

Sure, there are days when we announce we are defeated...

even though we aren't.

Because even if we let the moment win...we don't let the despair win.

We rise up.

We check and we check again. We tweak and we tweak again.

Losing isn't an option when the very air we breathe lives with diabetes.

Having a bad day?

Having a bad week/month/year?

You are not alone. And even though you want to give up...even though you say you are going to give up...even though you are sure you are going to give up...

I know you won't.

I KNOW it.

(Because you haven't given up yet. Right?)

Look at your track record. You win every war.

You eventually win them all.

Here in the DOC there is an entire bottle of "same." Take two and you'll feel better in the morning.

It comes naturally for parents to hold the world on their shoulders.

Naturally, we want to take all the hurt away from our kids by using our super power: Love.

We want to, but the hurt comes anyway. All we can do is use our love to salve their pain.

Our love can't cancel out the pain, but it can soothe it...and that is enough.

You are enough.

Your works are enough.

You can do this.

Our children can too.

If you are consumed right this moment, remember that our lives on this earth aren't meant to be miserable all the time. We are meant to find the joy in the shadows of the misery. There will be moments that seem to be devoid of light. But it is all smoke and mirrors...the joy is always there.

We can find that joy in the smiles of our children. We can find it in the kindness of friends. We can find it when we help others.

We can and we will find that joy.

Because when we love our children as much as we do...

The joy?

It comes naturally.

Not Quite a Wordless Wednesday: food IS love

I don't really care for Valentine's Day.

You know how it goes. The heavy pressure on that romantic aspect of our lives, that may or may not, live up to "Sense and Sensibility" expectations. The courting, the chocolates, the flowers, the glittery stuff. The "proposals" and declarations. Bah. Humbug. It was enough to make some of my dearest friends... 'joyfully' declare their mood of choice for the holiday, by getting creative on Facebook...

(I have to admit, since I also dislike romance novels,
I thoroughly enjoyed this little creation.)
So... though I do the usual, quiet penance at home with the husband, I can't say I focus very much on Valentine's Day. I certainly don't think of walking away with any sort of "wordless Wednesday lessons," if you would. What's to learn? Materialism? Impossible-to-live-to expectations? Yeah, so one would think. (I don't even have any kids, so I can't make this post about them! lol)

Often, though, life quietly speaks to us in it's own way... especially when our hearts are open, and not just open to diamonds, or chocolates, and other distractions and materialisms, but open to what's TRULY being expressed... by fate? God? The universe? Your own inner self? Perhaps. But, maybe... Just maybe... Valentine's Day needs to be a bit more "selfish" than it already is, you see. Valentine's Day should be about the one love that actually matters more than almost any love out there: self love. Yes, not the kind of self love that goes around expecting what can I get from others... but the kind of self love that goes around expecting what can I get from MYSELF. 

The little image, above... the heart made of wholesome food. That was IT. That was all Valentine's Day had to give me, yesterday. And it gave me a LOT; more than I could have imagined. A random posting of sorts, shared by a stranger, with entirely different intentions.

Food is love.

For me, food has always been love (even though I sort of dislike food). Just, perhaps, not the right kind of love.

Like any other person struggling with binge eating, and disordered eating, I tend to, unwittingly, look for love in food. I tend to want to FEEL things from the food I eat -- comfort, enjoyment, 'numbing' of bad feelings, friendship, avoidance of issues, appeasing of bad memories, etc, etc. Often, I've tried, again and again, to replace the love that others would not give me, or the missing attention from parents... with food, or bury whatever awful life traumas, underneath it.

Often, this is termed "When Food is Love."

Recently, though, I've been quietly asking myself... what if I can just change that definition around? What if food can still be love, but, from a different angle?

The image above gave me the answer. It almost literally screamed it:
"You can do more than just THINK you're getting emotional support from food... you can actually LOVE YOURSELF with food. Good food. Quality food... HEALTHY FOOD. To show yourself love with proper nourishment is the purest form of self love... Be very selfish with it. Do not abuse it, and do not entrust it to just any food. Treasure it."
When we thoroughly manage our health and give ourselves quality foods that make us FEEL healthy, able bodied, and able minded, capable of taking on the world, of thinking, and making proper decisions... When we give ourselves foods that don't just fuel our bodies, but make our hearts sing because they are wholesome and tasty, and FULFILLING, and in more than just temporary emotions we might feel... But also in HEALTHY emotions we may anticipate because we've put effort into making such meals, and invested in ourselves, as we would in our children... We are literally, feeding ourselves love. We ARE our children. We ARE our loved ones.

It's not a diet, it's not a "healthy lifestyle..." It is SELF LOVE. It is simply... Loving Yourself.  

Work on loving yourself, today. You'll be glad you did.

Monday, February 13, 2012

The middle diagnosis.

Yesterday was February 12th. It came and went like any other day. We went to church. We went to my in laws. I helped B finish is big report. We had a beautiful dinner. We came home and watched Once Upon a Time as a family. We went to sleep.

But yesterday was much bigger than that.

Yesterday was actually the very day L was diagnosed. At the tender age of 8 years old, he would have been celebrating 6 years with Type 1 Diabetes.

We will find a way to celebrate this week, but it occurred to me, I've never told L's story in its entirety. I don't even know if I remember it in its entirety. But I'll try.

I know it was a Sunday, and it was two days before Valentine's Day. The night before my husband and I went out and bought each boy a box of heart chocolates. We had never given the boys so much candy on Valentine's day, due to the fact that J's insulin wouldn't tolerate it. But he had been on his pump a couple years, and he could eat what he wanted now...so we thought, "what the heck! They so deserve it!"

As it turns out, no one got the chocolates.  They sat in my  closet for months before I ended up just throwing them away.

Early on that Sunday morning L woke me up for some water. Three times.

When he came back for the fourth I said, "You better hope you have diabetes buster, because it isn't ok to keep waking up your mama for water." It was a joke, and at 2 he had no idea what I was talking about, but no sooner had the words left my lips when Ryan grabbed my arm. We both knew in that moment that we needed to check his sugar.

It came up 220 something. We looked at each other in shock. I scrambled for the phone to call my endo. I was hysterical. Our regular endo was on Maternity leave, and this one was very blunt.

"Yes, he definitely is Type 1 now. I don't know why you are so upset. It is what it is."

"HOW can you know that from one reading? You don't know that! Stop saying that!"

"Go in this morning for blood tests, we'll see how far down the road he is."

We went in and tests only slightly confirmed what we feared. But here is the kicker...his blood sugars went right back to normal the next week. And the next.

And we went into denial...big time.

As long as we didn't feed him any carb bombs, his sugars were perfectly fine. Once in a while we would get a wonky one. Once in a while a 300...but then it would disappear and all would be well. The scariest part of this time was the lows. More than highs, we would see lows. He would get shaky, sweaty and scared and we would give him some juice. His pancreas was confused...it would help out a little too much when there was a high looming. It made me wonder if he wasn't type 1...maybe he was just hypoglycemic.

You can imagine the roller coaster ride I was on. One day I was sure he was Type 1. The next I was sure he was not. Until a few months later when he got strep throat. His throat closed and he wasn't getting enough oxygen...they rushed him to the hospital and he was put on what I assume were steroids.

Diabetes and steroids don't mix. He needed insulin immediately. His blood sugar went through the roof and there in the hospital it was realized...we have two boys with Type 1 Diabetes.

But here is the thing. We were all so relieved that we didn't have to live on that particular is he/or isn't he roller coaster that we took off running and ready to battle. There wasn't so much depression as there was determination. J admitted that it was nice not to be alone. He felt so guilty about it, but he felt closer to L despite it all. He would even check his sugar for us, and get his site changes done first to show L it was, "No big deal."

Also, L was a couple years older than J when he was diagnosed. He could communicate when he was hungry and he could communicate that he was thirsty. It was much easier altogether this time around. We knew we could do it.

And we did.

Now B's diagnoses...number 3. I didn't handle that one as gracefully. In fact I pretty much lost it.

But that is a story for another day.

I am so thankful that we have L in our lives. He is so much fun, and is the biggest sweetheart. He is unique, and innocent and everything you would want in a friend.

He is adored.


He is my hero.

Friday, February 10, 2012

When Ostracizing Type 2 Diabetes Became an Accepted Lifestyle...

When it comes to Diabetes, and the messages being put out there in the media, it is really hard for myself and other folks not to become angry -- if not downright furious. I have to tell you, I generally look through articles, and skim through different headlines, and just tend to "cherry pick" what's going to be real news, and ignore and pass over the fluff. If I were to read it all, I might be en route to a heart attack in less time than you can say "duck fiabetes."

But on Wednesday, just having gotten home from a long, physically and mentally exhausting shift at work, I failed to listen to my own advise. A dear friend of mine shared a news article, in my "Living with Diabetes" Facebook group... and I just lost it. I don't think I have ever been so outraged by an article before. (Well, except maybe for Wendell Fowler's abusive tirade against little Type 1 Diabetic children having ice cream. OMG, how dare they! That's almost as dangerous as Paula Deen having a cheeseburger! *snark, snark*) I was seeing so many shades of red, and purple, I just could not think straight. I said a bunch of things, in my group, about the article, and to my husband... went and kicked a few things around... flipped off Dr Oz on the TV... and then I felt like my head was going to explode. It was just too much.

Having taken at least, a few days, to calm down... I can probably now tell you what I really think about this piece, with a little more perspective. The piece is called "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" (Yes, you are reading right... That IS the headline for this article), and it was written for The Atlantic, by reporter John-Manuel Andriote, who has supposedly been specializing in HIV/AIDS reporting since 1986. I guess, I would like to think that being exposed to such a world would have given Mr. Andriote some perspective, and a keener sense of tact, and to an extent it has... but, apparently, not enough to have helped him rethink such a terrible headline.

The article itself makes a few key mistakes, which well, to an outsider would not be as self evident. And why would they? Our current government, medical advisory agencies, and medical industry want to do all they can to pass blame onto the Type 2 patient, entirely, and take on NO responsibility themselves. I've shared on this, before, many times. Especially, the deep denial of how multi-faceted the triggers are for Type 2 Diabetes, and the roles pollution and other medications, etc., have in the development of the disease. It is unfortunate that everyone in the industry quotes such poorly done research studies that do not take these complexities into account, or even consider to do so, to blanket claim that 80% of all Type 2 Diabetes is "largely preventable." These simplistic allegations lead to discrimination, misunderstanding of a very complex disease, denial of health management resources and tools by the insurance industry, and uneducated reporting that often leads to societal abuse, bullying, and further discrimination.

Still, there is some good, among the bad, to be found in this article. I do feel that, had the author taken some time to meet with members of the diabetic online community, this article could have really shed some light more adequately, on a lot of issues that affect our community, without contributing so much to the problems it so tries to 'address.'

The Good in this Article: 

  • Right off the bat, the article addresses the issue that the medical industry does not like to discuss with patients, or at least seldom does, the idea that they can manage their diabetes without medications, much less what Diabetes even IS. This is, indeed, a struggle we have right now. But it is a deep, and complex problem involving a lot of ethical concerns which affect almost every aspect of the health industry, including the American Diabetes Association itself (it's probably not an accident that they recommend diabetics keep their blood glucose levels at or below 180 mg/dL -- a very high, and potentially long term dangerous, blood glucose level), as well as other diabetes medical guideline agencies. The fact is, many medical professionals receive kick backs and incentives from the pharmaceutical industry -- large kickbacks and benefits -- and it's in their pocketbook's best interests to keep as many of their patients taking certain medications. This is not something exclusive to the diabetes industry, though. I am sure this is one of the prime reasons why there are now, commercials on mainstream media, for prescription only medications. It's BIG business, and there's no better salesman out there than your doctor. 
  • Andriote does some thinking outside the box, which is helpful: Chronic illness, particularly obesity and diabetes, are multi-faceted diseases which do not have just one contributing factor to them (though at times he seems to suggest they do) and thus, will need a multi-sector response. He speaks about our sedentary jobs, and a poor transit system, and the lure of the food industry, and how addicting high fat/high sugar/high salt/food combinations can be... and the supposed "myth" that healthy foods cost more than unhealthy foods. He even quotes an article from someone who supposedly "destroyed" this myth. What is perhaps not understood by people who claim that healthy food is cheaper than fast food is that most dedicated Type 2 diabetics don't consider healthy food what they consider healthy food, and they have to cut back on carbohydrates in order to control blood glucose, and not rely solely on their medications for control. I'd like to see Andriote actually trying to live a lower carbohydrate lifestyle, at a grocery store, with a maximum of $350 for 2 people, for a month worth of groceries, and not being able to eat as many starches, grains, and other foods which ARE the cheaper foods, for their value and how far they go. Living on lean proteins, and veggies, and cutting back on all those starches and breads, and grains is NOT cheap. Also, per the fast food cost example he uses, if one assumes poor people buy value meals at fast food joints to feed all of their family members, one might be very, very naive: there is such a thing as a dollar menu, or less, at these places... And people KNOW this. How can you beat $2 for two double cheeseburgers at McDonald's??? It costs me $2.88 a lb alone, for chicken! (And it's cheaper in Iowa, than in many places...) 
  • Andriote talks about the need for balance in media industry reporting (Surprisingly): On the one hand, you don't want people dismissing diabetes as 'not serious' enough, but on the other, you don't want to create a public backlash for patients. "When the media do focus on type 2 diabetes, said Sarah Gollust, assistant professor at the University of Minnesota School of Public Health, they give twice as much coverage to the behavioral risks for it than any of the other factors that contribute. But this over-emphasis on personal responsibility tends to blame and stigmatize people with type 2 diabetes or who are obese. Those living with the disease may feel it's their fault if they can't always maintain the ideal blood sugar level. Worst of all, said Gollust, public support could erode as people are expected to cover the costs, however they can, of a medical condition it's believed they brought on themselves ... Public support for addressing diabetes is imperative when you consider the tremendous amount of money it costs to manage the disease." This is a very important reality that we, as Type 2 Diabetes patients face as we strive to manage this disease. We NEED support, and we can't succeed without it. However, many of the undercutting remarks Andriote makes, including his headline, are FAR from being fair and balanced, and certainly not supportive! On page 2, Andriote has a "listing" of facts, and goes on to say that "Although there is a genetic predisposition for type 2 diabetes, the vast number of cases are the outcome of poor diet, obesity, and a sedentary lifestyle." Of course, this is contradictory... because ALL cases are of genetic predisposition. If not, then ALL obese persons would have diabetes -- and this is simply not the case. (I won't even go into his usage of the phrase "people of color" to talk about African-Americans, Latinos, and other minorities...) 
The Bad in this Article: 
  • Andriote, sort of, implies that most Type 2 Diabetics could manage their condition without the need for medications, if they just try a little hard, and then they would be cured. There is a BIG disconnect in here: 
    • For one -- he fails to realize that by the time the average person is diagnosed with Type 2 Diabetes, their disease is so advanced, they have lost nearly 40-80% of their beta cell function, making it extremely challenging to near impossible to control blood glucose levels without the assistance of oral medications, or insulin. Again, being the multi-faceted disease that it is, diabetes NEEDS a more aggressive and aware medical community, as well as increasing efforts in continuous education FOR the medical professionals, as well as patients. A medical professional who cannot think diabetes, and catch all the symptoms and markers of diabetes, in an age when it's being considered as an "epidemic," is a medical professional who will endanger lives, and contribute to the rising costs of the disease when it comes to complications that are not being caught on time. 
    • Secondly -- The kind of lifestyle changes to achieve true remission and euglycemia, are a lot more stringent than what the ADA might tout. You *cannot* reach euglycemia -- true euglycemia -- while thinking that blood glucose numbers below 180 mg/dL are normal. True euglycemia are levels that are below 140 mg/dL or lower, after 2 hours of eating, and in fact, rarely exceed that. In fact, some might even say below 120 mg/dL at 2 hours, or less. Not everyone can achieve those levels -- especially, if they struggle with hypoglycemia, or  have other health related dietary considerations to make that might not allow them to easily cut back on carbohydrates, or increase certain levels of exercise, etc. I, for example, have to consume 80-100 grams of carbohydrate a day, at a MAXIMUM, in order to maintain my euglycemia. This is unrealistic to many people... and it's not a character flaw! It is HARD, often unrealistic, work. 
    • Thirdly, he goes on to claim that if folks worked hard at it, they could "cure themselves," and he uses an opinion paper, mind you, to try to back up his assertions. He even goes as far as claiming that this is the opinion of the American Diabetes Association (ADA), by claiming that the ADA says that "maintaining normal blood sugar without medication for at least a year could be considered a "complete remission,"" when in fact, the ADA specifically highlights a the end of the second paragraph, in that same opinion paper that "The opinions and recommendations expressed herein are those of the authors and not the official position of the American Diabetes Association." Moreover, the panel of those expressing their opinions recognized that they had clear conflicts of interest in the matter, and also, found it difficult to reach consensus considering the wide arrange of questions to be considered. The group does, though, make a very telling distinction between a cure, and a remission... which the author of this article seems to gloss over, quite nicely, to what he could take out of context, and better fit into his piece: "Medically, cure may be defined as restoration to good health, while remission is defined as abatement or disappearance of the signs and symptoms of a disease (3). Implicit in the latter is the possibility of recurrence of the disease. Many clinicians consider true cure to be limited to acute diseases. Infectious diseases could be seen as a model: acute bacterial pneumonia can be cured with antibiotics, but HIV infection, currently, can at best be stated to be in remission or converted to a chronic disease. The consensus group considered the history of childhood acute lymphoblastic leukemia, which evolved from a uniformly fatal disease to one that could be put into remission to one that can now often be considered cured (4). Conversely, chronic myelocytic leukemia is now considered to be in prolonged remission, but not cured, with therapies such as imatinib ... For a chronic illness such as diabetes, it may be more accurate to use the term remission than cure. Current or potential future therapies for type 1 or type 2 diabetes will likely always leave patients at risk for relapse, given underlying pathophysiologic abnormalities and/or genetic predisposition. However, terminology such as “prolonged remission” is probably less satisfactory to patients than use of the more hopeful and definitive term “cure” after some period of time has elapsed. Additionally, if cure means remission that lasts for a lifetime, then by definition a patient could never be considered cured while still alive. Hence, it may make sense operationally to consider prolonged remission of diabetes essentially equivalent to cure. This is analogous to certain cancers, where cure is defined as complete remission of sufficient duration that the future risk of recurrence is felt to be very low."
You see, it is one thing to call something a "cure," because it is more hopeful, and more satisfactory to a patient... than for that to be, actually, a cure. The likelihood might be low, but it is, in fact, not a cure. As a comparison to HIV made above, for example, people like Magic Johnson have had their HIV infection in remission for years, but would would we say that he's cured? Not in a million years. Just because I can't "infect you" with diabetes does not mean I'm cured. This debate among colleagues does not equate to something actually being "officially" considered a cure. Obviously, operationally, we cannot treat presently uncontrolled diabetes in the same way as diabetes in tight control, or in remission... So DUH, it can be "operationally" a cure, but not in truth. Remission is remission. A cure, is a cure. This is truly, irresponsible journaling at it's best. 
I would add that the amount of mental focus that is required in maintaining diet, food carbohydrate counts, exercise, and meal planning often borders on obsessive and unhealthy, and ends in many an eating disorder for many diabetes patients. The psychological ramifications of attaining euglycemia, at all costs, for many... have NOT been assessed, and yet, they are just as much a part of the disease as hyperglycemia and other markers. Diabetes is NOT just a disease of high blood glucose!  

  • The author uses statistical scare tactics to put the fear of God in you: But he does not put them in perspective. It's one thing to discuss how the rate of diabetes will triple, or double, or whatever. It's quite another to not discuss the rate of population growth, right along with that. Obviously, people ARE reproducing, and diabetes isn't just happening in a vacuum where the rate is growing by leaps and bounds larger than what it is. It's hard to say, because what will the population be in 2050? Our population is EXPLODING to what are potentially unsustainable levels, and of course, that's going to make numbers for any disease seem scary high, without some perspective. What would the rate be in RELATION to total population at that time? THAT is what the question should truly be... In addition, the author wrongly states that the prevalence of obesity has been increasing, year after year, when the prevalence of obesity has remained STEADY for the last 12 years.  Could it change, tomorrow? Sure... but for now, I think we can say many folks are starting to be more conscious of obesity, and their health, even if they might not see themselves as 'overweight.' Andriote fails to keep balance in the picture he's trying to paint.
  • While Andriote wants to instill a sense of seriousness to diabetes, while claiming we need support, he attacks commercials with friendly faces and role models, claiming that persons who are fit, or joggers, or younger folks -- are not what most Type 2 Diabetics are like. Perhaps not (some) newly diagnosed Type 2 Diabetics, but is it wrong to have positive role models to aspire to? Is it wrong to see that some of us HAVE made changes, and CAN live a healthful life? Is it wrong for me to see another 35 year old I can relate to, on the tv? I fail to see just what he wants to accomplish, here. Does he want a fat, old Joe, sitting on a sofa, not able to move, and popping pills, or doing 'leg exercises' from a chair, because he can't move? Would THAT be more appropriate? Or perhaps, he wants people with their limbs amputated, like the city of New York's shocking diabetes ad campaign? I'm not sure what's the alternative he's looking for, here, and what's running through his mind. 
Of course, I can't end without discussing... that headline. "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" ... I'm guessing he's trying to say most people just "accept" and take the diagnosis as a given, that they will need to live with this disease, forever... and take pills forever. But boy, is it an uneducated headline. Yes, people can live pill free, for a while... and depending WHEN they were diagnosed, if it was late in life -- maybe they might never have to take any meds, ever. But no, it's not a cure. Type 2 Diabetes IS a progressive illness, and the likelihood of a need for medications increases with the LENGTH of time we've had this disease -- and not exactly with how well we've taken care of it. Time goes by, and not in vain... our bodies DO age. Things break down. My father was in remission for years, yet he was never cured; diabetes still progressed, and still took his life. It happens.

Diabetes is not an "accepted lifestyle" anyone chose, anymore than people who got AIDS or HIV (by whatever method), CHOSE that as their lifestyle. I bet you $1,000,000 that this author would NEVER dream of writing "Curing HIV: How HIV Became an Accepted Lifestyle," merely because he read an opinion piece on how one can keep HIV in remission for YEARS. The headline even seems to sort of imply that we "coddle" people into being lazy about their care, and lazy about "curing themselves," so that we don't need to support them. It's not a disease, if you would, it's a "lifestyle." Yes, because Type 2 Diabetes is sooooooo glamorous. It's the lifestyle of the fat, and sloppy, and just give me my Metformin, over here. I'll take it with a side of that value meal, please. 

Sadly, Andriote could have done SO MUCH to advocate and help our community, but instead he chose the low road of blame, and veiled vitriol in between his lines. How someone who has written for the AIDS community can be so close minded about the needs of another equally ostracized community is BEYOND me. 

Thursday, February 9, 2012

The deep-down-to-my-soul ugly truth.

I always try to be totally honest. I mean, is there any other way to find healing? Blogging helps me get to the heart of what I feel deep inside. Only good can come from that...I hope.

I begin typing today with no map on where I am going. Only the realization that everything is making me cry these days. Statuses on facebook. Blogs. Videos. If it references diabetes, inevitably...the tears come. They aren't harsh tears. They are soft, they are real, and they are all the time.

It is my goal today to get to the heart of that. I've been asking myself, why? Why am I getting so upset, so easily.

But sitting here in this moment, I think I've been asking that to myself all wrong.

I think a better question is, why am I touched so easily by what I read?

Why does it hurt today more than any other measure of time before?

Maybe because the boys basals are still a bit wonky. When things are not smooth sailing the reality of this disease bleeds into my emotions.

Ebbs and flows.

But I think there is more to it.

My boys are growing at an unbelievable rate. They are changing, and with those changes come memories of how things used to be. Remember when?

I think it bothers me that our family doesn't have a "remember when there was no diabetes." It feels like it has been around since forever. We had only started our family when J was diagnosed. He was a baby. And now he is a teenager, and before I know it he will be gone, and married, and starting a family of his own.

Which brings me to something that is making me sob as I type. I read on the ADA website, that the chances of my boys having a child with Type 1 Diabetes is 1 in 17.

That is doubled if they are diagnosed before the age of 11.

All my boys were diagnosed before the age of 11.

In fact, all of them were diagnosed before the age of 6.

The thought that more people that I love will have to live with this disease infuriates me.

I take my lot happily. I have no complaints that there are 2am checks and countless set changes and phone calls from school. But would I ever...ever...wish this worry on one of my boys?

Never. They have enough worry as it is.

They all want big families. They talk about it all the time, and more than anything I want that for them.

I would never tell them not to, or even insinuate they shouldn't. I had them, and I am so so thankful I did. Would I have them again if I knew what I know now. You bet your mySentry I would!

I just wish it wasn't a never ending cycle. I wish they could achieve their greatest dreams without heartache.

But in writing this I realize that everyone has their heartache. Diabetes or otherwise. Who am I to wish that they have only happiness in their life? I don't think perfect lives exist...and I truly believe that without knowing sadness, we cannot know joy.  I want them to know a lot of joy.  Honestly though, one in seven sounds so nasty.  It really is less than a 12% chance.  That is an 88% chance that their children won't have Type 1.

Man I hate percentages.  They are useless.  You just never know where you are going to fall.

I guess the reason it upsets me so much, is they already have enough to battle. What else is life going to throw at them? I can't bear to think about it.

I can't bear it.

Well there it is. Depressing, deep down to my soul thoughts, all wrapped up in a not so neat bow.

I would like Type 1 Diabetes to end here thankyouverymuch. In fact, I think I'm ready for a cure now.

There. I said it.

Don't shoot the messenger...you know you wish for it too.

Tuesday, February 7, 2012

The rest of the story...

Last week I posted about L's mysterious lows. I thought it was a fluke. I thought I could ride it out. But on day 6 it became blaringly obvious that it wasn't safe to sit idle anymore. I had to change basal rates.

For the record...I hate HATE HATE changing basal rates. I only find success if we are constantly battling highs. If we are battling lows, it has always worked in our favor to just ride it out.

My gut said, "ride it out!" But seeing another 40 stare back at me on Friday pushed me over the metaphorical edge of my sanity. (Which admittedly is very easy to do, but doesn't change the fact that those kind of numbers are just too dangerous.)

Must change basals.

L has a higher basal rate between 4am and 10am. I'm sure this is in place to battle the breakfast spike, but for whatever reason I decided that this would be the rate to change. I brought him down one little step. ONE. A small change, but one I hoped would domino throughout the rest of the day. The lows were starting at 9:30am-ish, so I thought I'd nip it all in the bud.

I made the change Friday after school which I knew would negatively affect his weekend. L always boasts much higher numbers on the weekend.

He was through the roof all weekend long.

"GOOD!" I said. Monday he will be perfect...I just know it! (I'm crazy that way.)

But alas, Monday yielded an epic fail. I bolused fully for breakfast and that spike got the best of us anyway. He was even 400 after school.

I shook my head and grabbed his pump. "We are changing your basals back. But instead of going until 10am, I'm going to cut it off at 8am."

So here it is. The moment of truth. It is 9:30am on Monday. Every minute I don't get a call is a victory.

I will now wait.




I have received the call. The snack recess call. The one of two calls I should receive from him while he is at school. (Last week we averaged 6 calls a day. FUN!)

He is 143. Woo to the freakin' hoo!

A little side note: Yesterday I had the stomach flu. Just me. Which is really weird, as I always get my bugs from the boys. Maybe there is an answer to our unsolved mystery. Maybe L had a bug last week and wasn't absorbing his food correctly.

I feel relief that we might be on our way out of the crazies, but at the same time I know...I KNOW...more crazies are waiting just around the corner.

It wouldn't be Our Diabetic Life without them.

(For those of you who do not pump and need clarification...basal insulin would be the long acting insulin you use. Our pump mimics your basal insulin by giving small puffs of the short acting insulin all day long. My boys have three different basal rates programmed into their pumps to counteract growing patterns, the exercise they have at school, and the morning spikes. Bolusing is the act of giving a short acting insulin when one of my boys is high, or is eating carbs.)

Laughing My Bottom Off, Perhaps Literally, at Diabetes...

It's been about a couple of weeks since I've ranted on anything, and I really apologize for that. The fact is... I've really been exhausted. I've been exhausted, and in a lot of pain. I'd call it chronic pain, but it's only chronic in the sense that other events keep happening, and happening, on top of one another, to not let the affected parts of my body just take some time to heal. It's like this stupid domino effect, of sorts, except, well... every time a stupid domino falls, it hurts, and I feel every bit of my 35 years of age.

Where do I start?

Well, let's see... About two weeks ago, while I was walking to our corner supermarket, I fell hard on some ice. And I mean, I fell REALLY hard. The kind of hard where you sit there, wondering if you broke anything, and unable to get back up after a few minutes. (The driver, passing by at about 20 mph, must have had a really good laugh at my expense.) The fall itself was painful, but then the pain didn't seem that bad after a few hours, and the next day, everything was fine.

Except for day 2, and day 3... which were utter hell. Then I felt 70, instead of 35... and in need of some kind of walker. (With apologies to 70 year-olds, who can probably run laps next to me, right now.) Leave it to me, to fall on some almost non-existent ice, on the mildest Winter we've had in at least 30 years. On the 4th day, I felt distinctly better, though not completely healed... But on the 5th day, I had to work -- and as some of you may know -- I work unloading trucks for a local department store, a few days of the week. Of course, I had to help unload a very atypical, large truck of merchandise, so that on day 6, I was back to feeling like I felt on day 2.

At work, I *also* hurt myself... by smashing my left shin against a flat of merchandise, which is still black and bruised, and throbbing, and overall, my joints just don't seem to be holding up so well. I'm having some pain in my left ankle, which actually began BEFORE I fell, the week before, from the constant stiffness of needing to walk on ice, and slippery sidewalks.

Many baths with Epsom Salt, and stretching exercises later, and I'm still one very achy feeling "old" lady. I also, still have to work tomorrow... It will be my third day in a row, when we usually have some off days in between.

Carpal Tunnel hasn't exactly been playing nice, either, with my poor wrists and elbows (at least on my left arm) not letting me get a good night's rest. I might yet consider some kind of joint support supplement, before this is all over. I mean, I feel like my warranty expired.  Are you tired of the whining yet??? I am. LOL And I have to live with me!

So... reading through one of my dear friends' blogs, I found a great, happy post... to sort of help focus some of my crappy attitude right now. My friend, A Diabetic Ballerina, wrote on adding a touch of "bling" to our diabetic tools. She gave me some inspiration to give it a little of my own twist... I may not be able to change a lot of my circumstances, but I can at least laugh while I'm doing some of the stuff I have to do.

So I've decided... that I can't freak out too much about having off diabetes days, from the pain, or whatever else comes my way... if my meter looks like this:

The supplies really didn't cost me that much: 49¢ for the googly eyes, and about a total of $4 for the gemstone cheeks, and foam with sticky backing, combined (with plenty of extras to spare, for the future). The foam came in the way of a bag of Valentine's Day hearts, in various colors, with sticky backing, and I just cut out the bottom to make one of them look like lips. 

It was all in all, an achy walk to JoAnne Fabrics, that was more than well worth it. Time to bling up the rest of my back up meters! *mwahahahahahahahahahahahaaaaaaaaaaaaaaaaaaaaa!!!!!*  

Wednesday, February 1, 2012

Unsolved Mysteries.

As every good mystery does, this one begins with a puzzling scene...

A boy checking his sugar 20 minutes after eating lunch and seeing a 47 blinking back at him. He shifts his eyes to see if anyone else can see the ghostlike numbers on his monitor.

He wonders if he is imagining it.

He checks again, just to make sure.


He fumbles for his cell phone and calls his mother. She'll know what to do.

She is speechless.

"Mom? ... Mom?"

"I'm sorry honey, I'm here. Eat a bag of fruit snacks AND an apple juice. Do you think your tummy can handle that?"

"No problem!"

The scene switches to the mother. Even though she sits perfectly still on the couch, it is evident that her mind is working at lightning speed trying to calculate how much insulin is still in her dear little boy's system.

He'll call her soon. He always does.

But as an hour elapses she realizes that the call is not coming, so she grabs her coat and rushes across town to check on him herself.

As she drives by the school the landscape of the playground catches her view. There she sees her son's class having "free play." Children are running. Children are bouncing balls. Children are metabolizing much of the sugar in their body into energy.

She knows her son doesn't have enough sugar for that kind of energy.

She parks and walks at a fast clip towards her son's classroom. She enters it and grabs his blood sugar monitor...as she walks out the door she sees the class making their way back in.

His finger didn't stand a chance. She grabbed it with a swiftness that only a worried D mother could muster, and in seconds had the blood sugar confirmation in her hand.


Before her son even knew what was happening she began stuffing food into his mouth. More fruit snacks. More Apple juice.

The rest of the afternoon and evening consisted of an uncovered banana after school, and uncovered donut, and then dinner where she bolused him less than half of the carbs that were consumed. The nighttime yielded more uncovered snacks and two temporary basals of zero for an hours time each.

He woke up the next morning 95 and has been fighting lows the entire day since.


This has happened before, and it has happened many times to my friends. When they reach out to the community and ask, 'why,' I always respond with the phrase, "Diabetes hardly ever makes sense...and trying to figure out why will only make our brains swellier."

But when one is in the thick of this mysterious conundrum, one really has to say...WHAT THE WHAT! WHY THE WHY! HEAVENS TO BETSY, SLOW THIS TRAIN DOWN!

Unsolved mysteries gather and multiply throughout our community every day. Diabetes is math. And math SHOULD make sense. But our bodies are so much more complicated than ratios and hard numbers. Our bodies are miracles, and it is blaringly obvious that as a human community we haven't figured out all the subtle nuances our bodies have to offer. If we pooled our money and hired the most talented detective alive, I'm sure most...if not all our unsolved mysteries, would stay just like that...unsolved.

There are a million and one reasons why these lows could be happening. Unfortunately, there are a million and one reasons why I'll probably never know for sure which reason it is.

In the meantime, I will SWAG my way through this episode and hope that we come out on top very soon.

Donut anyone?

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