Monday, January 30, 2012

And the toes have it.

It came out of nowhere. How in the world did this idea pop into his head? Did I joke with him about it? How does he even know this is a possibility? Was it his older brother that filled him in? Where in the world is Carmen Sandiego?

Basically, B came into the family room on Saturday night and declared:

"Tonight, when you check my sugar while I am sleeping...I want you to check my toes."

"Why?" My husband and I questioned in unison.

"My fingers just need a break."

And with that he whipped around and walked resolutely out of the room.

My husband and I looked at each other warily. We were sure this germ of an idea had to be planted by someone. Now don't get me wrong, I know that there are plenty people in the world that test nightly on toes. Our family was just never one of them. I think maybe we posed the possibility to J when he was younger and were met with so much resistance it became a non issue. I'm sure we abandoned the idea altogether before B was even born.

"Are we really going to check his toes?" Asks my husband

"Ummm, I think we have to." Responds me.

At 10pm that night I found B laying in the wrong direction on his full size bed, his bare foot hanging off the edge...


Above him was a hurriedly made sign that read:


So we did it. For the first time ever, we checked his toes all night long. (I do admit that I checked his finger to get an idea if the two numbers would be in the same ballpark. I suppose that is all part of a D mothers wiring. We have double check, and be sure we aren't doing anything crazy when we try something new.)

The next morning B came running into our bedroom, so excited he was going to burst.

"So???? Did you do it????"

"Do what?"

"Did you check my toes last night????"

"Yes."

"That is SO awesome!"

He started to run out of the room when I stopped him.

"Hey. Who gave you this toe idea?"

"I gave the idea to myself. I just want my fingers to get a little break. That's all."

The mother in me wonders if someone said something about the black spots that dot his fingertips.  But for now I'll try not to meddle and just do what my sweet boy asks.  He deserves to make these kinds of choices.  It is his body after all.

Friday, January 27, 2012

Reenactment: Too much information


My husband and I have a lot of conversations over the phone. He is usually gone before I wake up, and he drives around all day to see clients. I drive around all day being a mom. As a result, we are always trying to catch up with what is going on in each other's lives.

(P.S. The mySentry has been off the past two days as J asked me to wait until Friday to put the CGM on him. He is next in the lineup!)


This is our conversation that took place yesterday.

((((((Ring)))))))

Him: "Hey babe! How are you doing?"

Me: "Better, now that I'm on the way home. The kids in L's class were pretty feisty today. You?"

Him: "My clients are a little feisty today too."

Me: "Hey, what were the boys blood sugars at 2?"

Him: "Hey, yeah...what did they wake up at?"

Me: "I asked you first."

Him: "They were all good. I had to bolus B though, he was like 210."

Me: "What? He went to bed at 210. I gave him a full correction. That isn't right. I have a feeling we are going to have to up his evening basals."

Him: "But yesterday he went to bed 105 and was sixty-something at 2am."

Me: "Will this kid just develop a pattern already! L was 80 this morning. What happened?"

Him: "Happened? What "happened" is he was 170 and I gave him half a correction. That is weird."

Me: "Weird is J. He woke up higher today. But I'm pretty sure he has been waking up in range every day before this. Hey, maybe B's correction ratio is off. When he is in range he is fine, or low...but when he is high he doesn't go down. I'm brilliant!"

Him: "The other night he was 68, I gave him 5oz of orange juice and temp basaled zero for 30 minutes and he still woke up 80. I don't get it."

Me: "Wait, who are we talking about?"

Him: "J."

Me: "When did we skip to J? We were talking about...wait...who were we talking about?"

Him: "Maybe we need to start writing this stuff on the whiteboard again."

Me: "You think!??? My brain is coming out of my ears. He shouldn't have woken up that low."

Him: "Who, J or L?"

Me: "I've gotta go, I need to bang my head against a wall."

Him: "I've gotta go anyway, I'm at my next customer."

Me: "Love."

Him: "Love."


Wednesday, January 25, 2012

Burnt Out on Judgment: The Not So Simple Motions of Diabetic Living...

This might seem silly... I know. I know I don't have to try hard, or go far, to ask my readers to imagine for a moment being a person with diabetes. (Naw... You don't say!) ☺

But still...! Imagine, for a moment that you're a person living with diabetes, and have lived with it for many, many years... Imagine it's been challenging. You've gone through many phases of burn out, and phases of challenge. It's been a deep struggle, for various reasons:

  1. Managing this crap every day is a roller coaster, and well, it seldom likes to actually do what we expect it to do. Einstein once said that "doing the same thing over and over again and expecting different results" was the definition of insanity. I like to call it... Diabetes.
  2. You have some white coat person always reminding you if you don't take care of yourself, you're going to die. And NOT in uncertain terms, either. 
    1. You'll get retinopathy... 
    2. You'll get nephropathy... 
    3. You'll get neuropathy... 
    4. All the opathies... 
    5. You'll get your limbs amputated... 
    6. You'll lose bladder function... 
    7. You'll be impotent... 
    8. You'll have congestive heart failure, or a stroke...
    9. You'll go into DKA, or insulin shock...  
    10. You'll DIE. 
  3. You may not necessarily have many close friendships, in your immediate circle of acquaintances, that can actually understand you. 
  4. You have some family members constantly reminding you of the things the white coat person was reminding you... 
  5. You have friends, coworkers, and other relatives, wanting you to FORGET about what the white coats, and the other family members, keep reminding you, and then just go live life with them... "just live a little." (And it's always 'living' that's centered around food, or alcohol.)  
  6. You have your own deep desires to want to just be NORMAL, or as close to normal as you can be... and "just live a little."
  7. You've carried the heavy load of discipline, and care, however individualized your load might be, for a long, long time. You are very AWARE of how serious it is if you don't carry the load. 
  8. You get tired...  You burn out. You drop the load.
Now... most of us understand this circle. We understand that it gets OLD carrying the load, and we get burnout. We stop... we go through the motions. Often, we even get eating disorders, etc. 

So we crusade long and hard for our folks, because, we don't want people to think we gave ourselves complications, when they happen. No one consciously says "I'm going to chug donuts! I want retinopathy!" -- Burnout IS a part of chronic illness. It is NOT a character flaw. It is not simply "people not doing their part," or not taking responsibility. It is simply... people being TIRED from taking on so much responsibility. 

By contrast, we may have well been doing 'our part,' and were just genetically predisposed to complications... But the world outside of us does not understand "genetically predisposed." The media doesn't tell ANYONE about "genetically predisposed" -- only about 'you can prevent and avoid complications, if you just take care of yourself.' Why? Because the media is not interested in shades of gray -- the media has a job, and that job is to gain viewership, and ratings. The only way you get viewership, readership, and ratings... is by generating controversy... And the only way you get controversy is by getting folks to think in the inflexible lanes of black and white. And when you scare people about the rising cost of diabetes (uncontrolled diabetes, mind you), and then show them articles about "My aunt Bonnie, who didn't take care of her diabetes, and was irresponsible, etc, etc..." people get MAD. Angry. Unsupportive. Unsympathetic. 

Does that make sense? I'm sure it does. 

Now, imagine a non-diabetic person... living their life as usual. They want to be normal, and keep living, just like anyone else... and as usual. They have the same family members, coworkers, and friends pressuring them to "just live a little." 

They go to their doctor, and hear:  
  • "Meh, you could lose a couple of pounds, but you're fine."
  • "You maaaaaay, or maaaaaaay not get diabetes down the long road... It's just not easy to say. But don't worry about it. You'll be fine. Just walk it off." 
  • "Meh, you're blood sugar is a little high, but you're fine! There's no way you have any issues... Just walk it off..."
  • "Nah, I don't think we need to test anything, you're fine... Just walk it off..." 
Now... If it is hard for us to get our minds wrapped around the realities and burdens of illness, when we HAVE illness... Imagine how hard it is for an illness-free person to get their minds wrapped around the POTENTIALS of illness, and some "boogieman" of illness, out there, somewhere, over the hill... that may come, or not come... but they can't really say for sure... It's just some hazy smoke and mirrors thing. Imagine being "genetically predisposed", but only if you trip! "Don't you ever TRIP!" (Of course, they don't ever mention the trip can also be almost anything, besides weight and diet...) 

Sure, hindsight is 20/20. I'd love to go back in a time machine, and slap the crap out of Liz, and tell her "hey, start carrying the load a little sooner!" (Not that it'd be of much help, with all my other health conditions, medications, and predispositions... They are, together, a much stronger trigger than lifestyle...) Some might say I was damned if I didn't, and damned if I did... But I'm not quite sure what I'd be avoiding, frankly... 

"Live sternly, as a diabetic, so that you don't become a diabetic." 

Seems a bit off putting... It might be hard to convince Liz. Especially if no one's serious about the boogieman... It's never around, and just some foggy illusion thing... And EVERYONE says you can get rid of it, if you do get it... (snark, snark) I mean, yeah, we should ALL do our best to be healthy, and everything... but Liz might want to enjoy a burden free life for a little longer -- at least, as long as she can. I mean, isn't that what we long for when we're burnt out? A bit of freedom? Choices? Splurging without going into some diabetic hell episode? Having a little more than a 1/2 cup of moderation?

Yeah, I thought so... What burnt out people want is not that different than what illness free people want. A little freedom, a little empathy, a little break, a little life.

So we should crusade long and hard for folks, because, people should not think we gave ourselves diseases, when they happen. Chronic illness is NOT easy to manage, but neither is it exactly so easy to avoid... No one consciously says "I'm going to chug donuts! I want diabetes!," and most people aren't binge eating disordered individuals... (And so what if some are... People have demons. People fight them as they can... or struggle, as they tire of their loads... Life is hard.) They are just people living... and illness IS a part of living. Illness doesn't really care if you gave it to yourself, or not. It is NOT a character flaw. It just is... It is simply... people going through the motions of LIVING... 





Tuesday, January 24, 2012

Emotional Whack-a-Mole.

It is confusing. Knowing how I'm supposed to feel. Being a caregiver of three children with Diabetes, I am expected to feel many emotions, take on many different attributes...all at one time. Is it no wonder my brain is swelly?

I'm expected to be brave: Allowing my 14 year old go away on a camp out for the weekend. Bravery. Allowing my 10 year old to attend Basketball Camp for 8 hours without me. Bravery. Allowing my 8 year old to go on an all day fieldtrip without me. Bravery. I have to keep a stiff upper lip and jump into the trust pool with both feet.

I'm expected to be strong: I want to cry all the time. But for the sake of being a semi-normal person in society, I must find the strength to believe there is a purpose in all of this. I've found it is easy to be bitter. Letting things go requires a strength that is not often recognized by society.

I'm expected to be vulnerable: I have to let myself feel for the sake of staying human. I must find times to cry to release the emotions and let life know I'm not a robot.

I'm expected to be humble: I can't believe that I know everything. I have to be willing to learn from everyone...even in the most unlikely of places.

I'm expected to be confident: I can't let the boys leave for school in the morning without exuding confidence in my decisions. They need to know I feel good about the decisions I have made, so they can enjoy their time away from me.

I'm expected to be certain: I must be certain that I entered in the numbers correctly. I must be certain that I used all of my best SWAGing abilities. I must be certain I did all I could for them to be safe.

I'm expected to be uncertain: I must always question myself. Second guess, and in turn...double check what I do.

I'm expected to be loving: I can't let my anger at the numbers bleed over to how I treat my children. They need to know that they are not at fault for my mood swings...or even some blood sugar swings for that matter.

I'm expected to be angry: Just angry enough to find the fight inside myself to keep going. The fight that says this disease won't win. I will keep my boys safe!

I'm expected to be wary: I must look at the pros and cons of everything. Educated decisions always. And when I listen to people I must always know that they are biased one way or the other...but that their opinion is based on experience, so there is always something to take away. It is up to me to find that nugget of wisdom in everything I read and hear.

I'm expected to be harsh: I have to be harsh on myself sometimes. Whether I like it or not, guilt is a motivator.

I'm expected to be forgiving: I have to forgive myself for forgetting to bolus. I must forgive the boys for forgetting to bolus. I have to know it isn't always my fault, and if it is my fault, I must understand that I am human.

I'm expected to be concerned: When that phone rings from the school and it isn't our designated time...I'm concerned. But, I also need to be concerned about how diabetes is affecting the boys. I need to be concerned about their mental well being as well as their physical well being...always.

I'm expected to be nonchalant: When someone asks how things are going, I'm expected to say, "Ahh, just fine. And you?"

I'm expected to be a fighter: My children come first. If I think they need to see the doctor, I will fight to see the doctor, even when the advice nurse thinks it isn't needed. I will fight for the rights of my children, and for their freedoms when it comes to Our Diabetic Life. I will fight every blood sugar number under 90 and above 120.

I am expected to be a schmuck: I need to take punch after punch after punch and not get up and punch life back. I need to take a few harsh blows...and understand that is the way life works.

I am expected to be rejoicing: Every moment I have with these boys is a miracle. I can't lose sight of the fact that we are blessed beyond measure to have access to insulin, blood sugar monitors, pumps and CGMs.

I am expected to be serious: Every decision I make is life saving. Every time I forget it means potential danger for my children. My choices affect my boys in an intimate, very real way. I need always to be cognoscente that diabetes is a serious...real...disease.

But regardless of all of this: I'm expected to be unaffected.

I need to feel all of this and not show it, well all the time anyway. (Or even all at ONE time.) I'm a mother and a wife first and foremost, which means keeping all of these emotions in check so I don't scare the crap out of anyone. It is almost like my emotions are one big Whack-a-Mole game. Each emotion pops its head up, and before I can get a handle on it, the next one or two pop up in its place. My mallet is in overdrive trying to keep up with all the emotions/moles on the table.

Who expects all this of me? Or what? Is it life? Is it me? Right now I can't answer that. All I know is I've been dealt this hand and I will play it.

Even though all of this is expected by the cosmos, it doesn't mean I'm not free to just be me. And if being me means schizophrenic-feeling-palooza...then so be it.

Because when I least expect it, feelings change...and that makes life more interesting.

Seriously, who wants a boring life anyway?

I choose my life any day of that week.  Emotional Whack-a-Mole and all.


Monday, January 23, 2012

CGM: Quality sleep, not quantity sleep.


(Before you read this you should know, I'm not a doctor.  I'm just a mom relating her personal experiences with the CGM. If you have any questions, call your doctor, your CDE, or contact Medtronic directly.)

I'm a fan of the CGM, but it has a lot of issues...not the least of which is it's always on, and it always has something to say.

Always on means constant information shooting our way. I don't know about you, but I have a love/hate relationship with information. On one hand, information is power. On the other hand, "SHUT UP I DON'T WANT INFORMATION ANYMORE!! MY BRAIN IS GOING TO EXPLODE!!!

We've had good runs and bad runs with the CGM, there are so many variables it is hard to distinguish which direction it will all go from the onset of a new sensor.

Before I get more in depth, I'm going to show you the technical side of the Medtronic CGM. Because you asked, and because it is always best to start from the ground up.

This is the needle that we insert the sensor with. (Don't worry, after inserted with a long rocket type device, the needle is pulled out.)


We insert the sensor into the child/lion and then we wait 20 minutes for the wire inside to "wet."  (I know that I stupidly put the CGM into the place that would be your child's belly button.  This is not accurate.  The CGM does NOT go in the belly button, lol! It will go on the side of his/her tummy or hips.)


Then we attach the actual transmitter and wait a couple hours for the CGM to ask for its first BG.


Here is a picture of what a pump site and a sensor looks like together.  We usually use some IV 3000 tape to secure the CGM.


After we enter the first BG the sensor will begin transmitting numbers to the pump. (There is no giant receiver like on the Dexcom, it is all integrated.) On the pump we will be able to see graphs, numbers and arrows indicting whether BG's are going up or down. Is this number accurate? That depends on many variables. We find that once in awhile we get a good box of sensors and numbers are very close. Other times we get a not so good box and the numbers just don't ever line up. (This is a personal theory, and I'm stickin to it.)  We have also found that the CGM doesn't like a lot of giant swings.  It finds it hard to keep up if you will, and accuracy can be spotty. I depend mostly on the directional arrows with this device. Because it is measuring values from the subcutaneous fluid, and not actual blood, the numbers will often vary.  (Directional arrows tell you if the blood sugar is trending up, or down.)  Sometimes though the stars align and everything is spot on.  When B wore it last week, this was the case. When we put it on L he bled too much and the sensor just was never spot on. I think the unpredictability of this device is the biggest frustration. If every time we got the same accuracy and results, the CGM would be our best friend. But I admit the unpredictability could be attributed to user error. I error a lot. I'm only human.

Does it hurt going in? I'm sure it does. But we put numbing cream on the boys twenty minutes before hand, and hand to heaven they do not feel the insertion. Because L was bleeding so profusely we had to put his CGM in a couple times. He looked away and honestly asked if we had done it yet...after it was in. He is our most sensitive child. One bad experience and he will not try anything again "ever!" The fact that he let us insert it again is very telling that the cream works. If you don't have access to numbing cream, (it is expensive,) I've heard others had good results with using ice to numb beforehand, and even read on facebook yesterday that someone found a product over the counter at Walmart called Dermoplast numbing spray. Worth a try.

Calibrating is an important task when using the CGM. We calibrate 3 times a day. When they wake up, when they get home from school, and at the 2am check. Calibrate means you put in the blood sugar number and answer "yes" to a question that pops up, saying you want the CGM to use this number as a new baseline. The numbers will jump off from that point, rather than the number it was on. Often the numbers can be very close...but calibration is not negotiable, as the alarms will unmercifully tell you.

One of the cool features on the Medtronic CGM include predictive alerts. If you choose to turn this option on, the pump will alarm when your child is at a certain number and the arrow is pointed down, or up. This is genius. Saved B from a couple lows...and a high too. There are a lot of alarms. You need to program the parameters in the pump just right as to not drive you or your child crazy. "Lost sensor," "BG Now," "Predicted high," "predictive low." "Low," "Sensor ending," etc...

How long does a sensor last? The FDA approves only for three days. The FDA doesn't have to wear it though and reinsert it into their child. I have heard rumors of people using it for much longer, restarting the old sensor as a new one and beating the system. I'm admitting to nothing...but it is best to ask your doctor what they think. (I'm not a doctor, btw.  Although I play one in real life...)

Do my kids "like" wearing it. No. Does it bother them. Not really. They wear it and don't complain at all. Just for some reason they resist putting it on again after it is off. Obviously freedom is a huge motivator. If your child is a light sleeper and wakes up for all the alarms, that isn't fun either. My boys don't wake up...but on bad nights, it does mess with their sleep patterns.

Which leads me to my last topic. Many people want these kind of devices so they can, "finally get some sleep already!" Does the CGM help parents sleep more? No. Does the CGM help make the sleep you do get become a more quality, deeper sleep? Yes. Having this tool as a backup puts my mind at rest. But there are nights when the alarms keep me up. Without the mySentry, I could never really hear the alarms at night. Now that I do, I'm not sleeping more...but I am sleeping better.  Some of my friends use baby monitors to hear the alarms at night.  Hey, whatever works!

Quality sleep...not quantity sleep.  That is the message I want to send out today.  The CGM can be annoying at times, but it is such a valuable tool that often the good outweighs the bad.  Every child is different...will your child tolerate it?  I can't tell you that.  Your child's diabetes my vary...and their tolerance too.



Saturday, January 21, 2012

Lessons from the Butter Incident

I love comedies. Satires, in particular. Some of the greatest of life lessons were buried deep within satirical works of literature, theater, and film. We laugh through them, but seldom do we stop to consider the valuable nuggets we've been just given.

In respect to filmography, what are probably two of my most favorite scenes are: Cher's observations to her friend Tai, about Monet paintings, in the movie "Clueless"; and Cameron's enthrallment with the little girl in Georges Seurat's "A Sunday Afternoon on the Island of La Grande Jatte," in the movie "Ferri's Bueller's Day Off."

These two scenes loosely mold a certain view I hold about life: Upon close examination, our lives are one, big, muddy mess; only from a distance, can we truly appreciate the elaborate works of art they have become --  black splotches and all. Just because we can't see the big picture now, does not mean there isn't one.

This week has been no different, for me.

The fact is, the diabetic online community painted a pretty big canvas, this week. Some used dark, somber, depressing hues. Some used vibrant, optimistic shades. In the end, we formed something. A message, quite loud, and clear. Emotions, and watercolors were mixed, and something out there... was soon formed... that when I step back, it's quite the masterpiece.

Diabetics are TIRED... 
  • Of fear mongering, population targeting, and misinformation in the media: Yes, non-communicable health conditions are dangerous, and they need a certain level of awareness; NO, they don't benefit from overly inflated, statistical research, aimed at scaring to death, targeting, humiliating, and laying blame on certain populations. This kind of environment only engenders animosity, a lack of empathy, and persecution, as well as breeding depression in those affected.
  • Of the same, stereotypical, awareness figures: Yes, diabetes can affect an aging, overweight population... But it can affect everyone else, as well! So many of us are NOT old, or overweight. Many of us are young, active, healthy, athletes even. (Yes, even many Type 2s!) Why not showcase people who have worked WONDERS in spite of diabetes? People who can garner our pride, and our motivation? People who are not clueless, but veterans at this game.
  • Of the same, stereotypical, awareness messages: Diabetics don't need to follow a 60% carbohydrate diet, in order to do well. Diabetics can be low carbers, vegans, moderate eaters, athletes who consume even more carbohydrates than this. We come in all shapes, and sizes, and we don't live by a chart... We live by what our glucose meters tell us! The sheer mention of a new diabetes cookbook out there really enrages most diligent diabetics... because we KNOW it's a lot of bunk. There's no such thing as a diabetic diet, and there are so many stupid notions out there to even recap in this little post (like that everything needs to be low fat), that I won't even go there.
  • Of the insincere profiting from our disease: Of cheesy product marketing, cook books, miracle cures, and scam artists. Of medications and treatments that cost an arm and a leg, accessories that cost an arm and a leg, and tools that are kept from folks who need them because only those who are privileged to good health insurance, or a good income, can access. 
  • Of the FDA: Famous for slowing down progress in what many deem as necessary advances, and tools in our community, yet the fast trackers of so many dangerous drugs, at the same time. Oh, why, FDA, must you not advance progress on something like a more accurate blood glucose meter... but you are eager to fast track yet another drug before we are fully ascertained of all it's risks in a certain population? (You know, this didn't use to be like this... I guess back in the 80s we complained the slowness of medication approval killed people... I can see it in certain diseases, etc, but I'm not so sure the dangers outweigh the risks, in diabetes. If Victoza sucks... it's no one's fault but Novo Nordisk's, and the FDA's.)
  • Of the constant social equation behind having Diabetes: 
    • Diabetes needs psycho-social support. It's one of those conditions that just incredibly grips at the heart of where we are the most connected to one another -- the social connections and moments that, though sometimes centered around food, nourish our souls and our relationships.
    • Of just the entire need to JUSTIFY ourselves, and who we are, and what we are to outsiders. The road to self acceptance, and the personal acceptance of others as diabetics (and whatever their stories) is a MARATHON... often with thorny roses, along the way. 
  • Of the lack of progress on these issues, and the lack of change: This same old tired song and dance is being played upon our diabetic lives, over, and over... and over again.  
But at the same time... Diabetics are TIRELESS... 
  • Optimists: We can see the light in any shade of gray; we can see how a bad can work for a good. We can see a blessing in what might otherwise be a terrible curse.
  • Advocates: We will go wherever, whenever. Our words will ring true. We will go out, and educate anyone, write letters, write blogs, create societies, start petitions, groups, online social media, make personal appeals, teach. All under almost any circumstances: flooded homes, lack of sleep, weekend warriors. We will NEVER stop.
  • Friends: An ear, and a shoulder, for those to cry on, to garner knowledge from, experience from, a virtual hug to embrace, a meet-up to get excited about... REGARDLESS of type. We are the secret society we have made for ourselves, that's not so secret, and we're eager (though bitterly so) to welcome you on board. 
  • Hopefuls: People who look into their loved ones eyes, and will NEVER lose their faith, their dreams... their visions... their drive. The reasons to keep trying, to fight for tomorrow, to wake up for TODAY. 
  • Supporters: Because it doesn't matter who, what, when, or how... tries to hurt you, or put you down... we will ALWAYS have your back. Always. Even if you're old, not so perfect, not so fit, not an athlete, in denial... and cook with butter. 
This week... I truly learned the AWE inspiring embrace of the D O C. 

If you are battling diabetes all on your own, I would like to truly urge you to consider, even if only as a fly on the wall, becoming a member of the diabetic online community. No need to blog, no need to be OUT there. But even just reading blogs like this, or attending Diabetes Social Media Advocacy night, on Twitter (Wednesdays, at 8 pm CST/9pm EST), will do SO MUCH for your well being. You NEED psycho-social support. Your social environment may want you to be alone with your disease, but you DON'T HAVE TO BE. You are NOT alone. EVER. You can do this thing. Come walk through life with us. Your shoes might be different, but when they walk beside mine... They make that long road... oh so nice. (We have plenty of extra blue shoes to spare.) 







Friday, January 20, 2012

Continuing the mySentry dialog.

Thank you for your questions the other day! Today I'm going to post answers to the mySentry questions, Monday I will have a long beautiful post explaining ALL about the CGM and how it works!


I'm going to start by saying that Wed night we had to take off Ben's CGM. He was ice skating and bumped it pretty good. (In other words, he fell flat on his stomach a dozen times.) I made the call and pulled it...and TOTALLY regretted it the next morning. He went to bed with a BG of 132, he was 125 at 2:00am...and then woke up almost 400.

What the what?!!

Oh how I wished I was warned about this ahead of time. We didn't get that sugar down until almost lunch time as a result. OK...enough crying. I have the CGM on L now...onward!

Many asked about how far B could be from the receiver for us to still see the readings. Honestly, I had to do some detective work...and it looks like I didn't have a clear picture of what was going on before. (I blame it on the combination of my epic flu and my perpetually swelly brain.) Our house is newer, and only about 2000 square feet. It is a completely open floor plan, not a lot of walls. From what I could see, B could roam freely and the graphs would still show on the receiver. However, it turned out that every time he spent a minute or two near the outpost, it would send the updated data to the receiver. When he ventured to the other part of the house, the receiver would simply be searching for data. Our floor plan works in our favor, because the boys TV/Hang out room is on the other side of the wall from the outpost in his bedroom, and the bathroom is about 5 ft away. He spends a lot of time in that little triangle, and it seems that is why I was getting constant streams of information. Your house/your walls may vary. mySentry is made for nighttime monitoring, but it seems I get the added bonus of a little more wiggle room, and a little more fun.

Below are some points that answer some of the questions I received:

The receiver updates its data about every five minutes from the outpost/pump. That is why, when B ran to get some water, or a snack in the front of the house, there was no interruption in reception.

I didn't move the receiver at all. I kept it in my room. It was easily visible from my bedroom doorway. The outpost stayed put too.

The pump needs to be within 6 ft or so from the outpost, and the receiver needs to be within 50 ft of the outpost. I found it went a bit farther than that, but it depends on your walls/your house.

The mySentry works exclusively with the revel insulin pump by Medtronic. Sorry...it won't work with Animas pumps, OmniPods or Dexcom CGM's. :(

Medtronic has told me that a mySentry for multiple T1's is definitely on their radar. They can't talk about it...which believe it or not, is very encouraging. We have only one CGM that we share between the boys. We only put it on them when basals are off and I need an inside look at what is going on. Last summer we took a vacation to Disney, and no one has worn one since. I am expecting another CGM in the mail any day now, so we will have two in the house to take advantage of. The last year it has literally been, out of sight, out of mind...but it is back in the rotation again, and that makes me uber happy. They are so enlightening!

Originally I thought that one outpost/receiver was all I needed. Only one wears the CGM at a time...usually I have one boy with wonky numbers at a time, (although the stars have aligned against us on more than one occasion!) After working with the mySentry for a few days though...I came to the uncomfortable conclusion that complete peace of mind, for ME, will only come when I see three graphs in front of me. Don't get me wrong, the one I have is a dream, I don't take it for granted at all. And I'd rather see one boy, than no boys, that is for sure. I can't imagine how life changing it would be for a family with one type 1. The fates gave us three though. One day...

Regarding the high price of the mySentry system...Medtronic is actively doing what they can to ensure access to mySentry for as many people as possible, including seeking reimbursement. Thankfully, they do have a positive track record of gaining coverage for new types of diabetes technology (i.e. CGM) with the help of patients and healthcare providers advocating for these therapies. (For those interested in how to pursue coverage from their insurance company, there is a Reimbursement Tool Kit for download here: http://www.medtronicdiabetes.net/Transformer_Form_Request_Information)

They are also offering a 20 percent introductory discount, no-interest payment plans for as low as $50/month, and financial assistance for families who meet certain income requirements.

I'm sure the cost of developing, marketing and getting regulatory approval are nothing to sneeze at. It is the first of its kind. Obviously, this device isn't marketed to the millions of people that other devices are, so the cost is going to be higher than we hoped for. I'm sure that they would rather have it cheaper and more accessible for sure, but quality and quantity are huge factors. Will the price go down? I personally hope so, but I have no idea. I guess only time will tell. Medtronic will work with you though, call them or email loopblog@medtronic.com with any questions, pricing or otherwise.

Some completely random facts about the mySentry:

It has a nightlight at its base that you can turn on. I'm assuming this is for PWD who would like to check sugars without turning on a light. 

The volume of the alarms can be adjusted, and so can the brightness of the screen. I have the screen very dim, but my husband is the kind of person that hates even the tiniest bit of light emanating from anything. (He often encourages me to turn my clock away from the bed.) I don't get it, when your eyes are closed you don't SEE the light! But to him, the mySentry is like having the international space station in our bedroom.

On the mySentry you can enter the users initials and choose a cartoon like picture to represent said individual. Why are all the pictures of hipster adults? I have children. From what I can see they are marketing it to families with T1 Children...where are the children pictures? The only blond guy in there has a beard, so that is who I have representing L right now.

My only complaint , other than the obvious multiple user conundrum, is that the mySentry doesn't show IOB. That isn't a deal breaker, but man, that would be oh so nice to see.

Did I answer all your questions? Let me know if I missed anything. Monday I will have a post with everything Medtronic CGM and answer all the questions pertaining to that. I'll be sure to include pictures, how it works, what it sends its data too, if my boys like wearing it, and everything in between!

My new blog construction is almost completed...whatcha think?


Wednesday, January 18, 2012

mySentry: My diary of the first 3 days.

You're in the right place!  My blog is under construction.  Please bear with me!
_______________________________________________________________________________

I have so much to share and only so much brain capacity. I've been sitting here staring at the screen for five minutes and have decided to just begin typing and see where it takes me.

I want to start out saying that I fully understand how completely blessed I am to have the mySentry sitting on my bedside table at this very minute. It is the beginning of something wonderful, and I have this unshakable feeling that this is bigger than what it seems to be.

On the outside it seems so simple. A monitor that displays your child's CGM graphs, directional arrows, BG number, Reservoir units, battery life and more. But on the inside, you know...my inside...it is peace of mind, and that is such an overwhelming feeling I can't wrap my head around it.

(If you are not sure WHAT the mySentry is, please check out my post about it HERE:  And all the links attached to it!)

This is one of the pictures that was released with the the mySentry:


Yeah...I didn't look like that. Most of you know that last week I was on my deathbed with the flu of the century. Included in the perfect storm of an ear infection and a sinus infection...I also had pink eye. The word "mess" doesn't even seem to cover it. So I was in my sweats, with bright red eyes, and a headache the size of Mt. Everest the first two nights I worked with the mySentry. Needless to say, my experiences were under "real life" circumstances, not nighttime perfect hair, cute nightgown, lab conditions.

Below is my thought process throughout the weekend.

Day 1: This UPS guy probably thinks I'm a junky. Bright red eyes, not a stitch of makeup, and obviously full of some kind of medication...but yet I smiled and I smiled wide. It has arrived! IT. HAS. ARRIVED!

Wait. I need to slap a CGM on someone. Who? Who will be my lab rat? Ahhh! B! He is my most mellow...AND he had the highest A1C last week...brilliant!

After inserting the CGM, which B took like a champ, my husband and I set to our room to set up the mySentry and to synch the pump and the outpost. I checked the clock to time us...we were expecting a good half hour...it took 8 minutes from opening the box to having it ready to go. Winning!

As I laid on the bed: I'm never going to sleep again. I'm just going to stare at this pretty graph all night...I just know it. (Snore.)

Now before I go on, you should know that I didn't read the instruction booklet before we went to bed. I was sick and my eyes hurt. This was a mistake. The alarm went off ALL NIGHT LONG. I was beside myself with confusion. I would silence it and it would just go off again and again. Later I found out that you can mute the alarm by pressing the silence button TWICE. I did not know that, obviously. There was one High BG alarm that I got up and fixed and then there were a couple where it couldn't find the pump. I'm chalking night one up to a rookie mistake. Do over!

Onto Day 2:

It was the weekend, so I spent much of my day walking by my bedroom door to look at the graph. Hello, awesomesauce! I know when we used the CGM in the past the boys would be beyond annoyed with me when I would ask them to take out their pump so I could see the graph and the number. This device sets them free of that...when we are at home anyway. That night when we went to bed, I was ready. I let the lights on the graph lullaby my eyes to sleep and night 2 began.

12:00am ALARM. High BG. B has been sick and his BG was over 250. This is the first big victory. I had bolused him an hour and a half before. I wouldn't have known for a couple hours that he was going up, (rather than down,) if it weren't for that alarm. I went in and bolused him and things were quiet until 12:30.

12:30am ALARM. It is alarming that it can't find a signal. I'll just quiet it with the silence button. A few minutes later...ALARM. I will quiet it again. A few minutes later...ALARM! At this point I have two choices. I can go in there and flip B over so there is a signal again, or I can MUTE the alarm altogether until the 2am check. I choose MUTE. (I was dying, remember!)

I got up at 2am and did my rounds, where I was forced to bolus B again. I was so thankful I had an eye on the graph, I hate bolusing before the first bolus has run its course. I turned the alarm sound back on and the rest of the night was quiet. I woke up periodically on the hour because of my head cold, and in a blurry haze smiled at the CGM graph in front of me. Flat line...all was well.

DAY 3.

11:45pm. Low alarm. Tears. Feed B. This thing is magic. It would have been another TWO hours before I checked him.

3:00am Alarm that I need to calibrate the CGM. "Thanks for the reminder" >Quiet! It keeps alarming. Apparently this is non negotiable. I always calibrate at 2:00am check, but this time forgot. My mistake. I jump up and check again and calibrate and there are no other alarms the rest of the night.

This is what I woke up to the next morning:



Is it not beautiful?

Tomorrow I will post my thoughts and post answers to the questions that many of you have, incuding:

"Will I ever be able to afford this?"

"You have three boys, how is this ONE gadget, that works with only ONE child at a time, going to help you?"

"And, how do you really feel about it?"

If you have any other questions, please feel free to leave them in the comments section and I will try my very hardest to answer those too!


Saturday, January 14, 2012

She's got Diabetes, now, Y'all!

I love observing people. People are an interesting societal experiment of contrasts, paradoxes, and dichotomies. If you are a lover of the observational art of human interaction and behavior, then there are two places you probably, secretly, enjoy: the mall, and the internet.

I love the mall, because frankly, I'm visually amused. It's like TV, really. (Except, well, I still don't want to see your boxer shorts, or your g-string, so please, pull up your pants.)

The internet... is a little more complex. It's like TV, in many ways, except that you actually get to SEE the end results of people being told how to think and feel (and often, with the added boost of anonymity). And believe me, there are plenty of influential forces on the internet, just like on TV, trying to tell us how to think and feel. 

So... all of this being said, it came as no surprise to me when yesterday, everyone became the judge and jury of Paula Deen, when a rumor broke out that she would soon be announcing that she has Type 2 Diabetes, and would be signing a major endorsement deal with big pharma corporation, Novartis. Tweeterers, and folks commenting on articles, let their disgust be loudly, and well known. Even certain entities in the diabetes online community, which I will leave unnamed, immediately and openly expressed their disgust, with expressions like "Ugh!," and "Really? Ya think?," only to delete those tweets later. My fellow pals at The Blue Heel Society have been working OVERTIME just trying to put out some of the fires. 

Why are people getting so worked up? 

Well, sadly, some of the backlash from this will BE that people will use her as an example and an excuse to ridicule, bully, and belittle others, especially Type 2 Diabetics, and spread misinformation that diabetes is caused by too much consumption of sugar, butter, lard, or fried foods. There's just no getting around that. 

I do think, however, that people just love to hate Paula Deen, for the sake of hating Paula Deen. Let's look at some facts. 

1. Paula Deen is annoying as *&%#.  I can't sit through much of her show without her little terms of endearment, expressions, and actual pitch and tone of her voice, getting on my very last nerve. Frankly, she's a little annoying to look at, too. I can't really put my finger on it... but there's just something about her hair, and what she wears, and how she carries herself... She doesn't have the most razzle/dazzle personality out there. This alone makes perfect fodder for being the SCAPEGOAT to anything we can possibly hate, and what is more vilified in our current decade than apparent unhealthful eating? Am I right? 

I know, I know what you're saying...! I can read your mind. You are an HONEST, unbiased person... and you would NEVER hate someone for just what they look like, or their personality -- it's that horrible lifestyle she's promoting, and you are raising your voice loudly against it.  

Let me ask you this, then... where is your anger for Adam Richman's "Man vs. Food Nation?" I mean, come on... that show makes me PUKE. If anyone glorifies gluttony, it's Adam Richman. But, really, to everyone... He's a star. Everyone loves Adam Richman, and he can do no harm. At least Paula Deen's show was never about "how much can I eat before I bust my guts, attempting it, while I'm on vacation." (Vacation is always the excuse, by the way. Only try killing yourself with food, while on vacation.) 

Where is your anger for Sunny Anderson? Yeah, she has some healthy recipes... But so does Paula Deen! Sunny Anderson is basically, a younger, black Paula Deen, cooking Southern Soul Food. Why is she not the Queen of Evil? She obviously has a few pounds to lose, as well... 

"Oh, but Paula Deen cooks with butter, and lots of sugar, and lard...!" -- Ummm... Remind you much of Julia Child? Where's your hate for her? She's considered the QUEEN of cooking! And she also BRAGGED about  it... and a little more boisterously than Paula Deen.

Oh, wait, I know why... Because she's that annoying woman, with the southern drawl, that reminds you of your redneck aunt who always came and pinched your cheeks, and called you "dumplings." THAT'S WHY. 

2. Paula Deen endorses bad eating. Paula Deen has a very overacted, dramatic show, showcasing the southern cuisine she grew up with, just like anyone else who has a show on holiday foods and eating, is showcasing that. If you think her food is bad, then guess what, YOU'RE the one endorsing it when you watch it. In fact, when you watch almost any of the shows on the Food Network, you're endorsing bad eating, AND telling the network you want to keep watching such shows about bad eating. (Let me tell you, for all his bitching, Anthony Bourdain had NO reservations about eating that really fatty, roasted hog on a rod, the last time he visited Puerto Rico...) You can't really pick and choose which particular brand of CRAP cooking you watch is actually crap. That being said... Not any single cuisine or style of eating is going to make you obese, or make you get any disease. Hey, people say it all the time... They say "back in the 50s, you never saw many obese people..." Well, back in the 50s, people ate butter, lard, sugar covered lard butter... whatever. Understand? Food doesn't make anyone, in itself, unhealthy... It is overeating that potentially does.  Do I expect Paula Deen to be eating this type of food at home, every day, just because she has a show about it? Well, not anymore than anyone who has a show on holiday food. That would get old, and annoying fast, don't you think? And many of the recipes on her site are actually quite light, lean, and decidedly not southern. 

Also... and this might be controversial... but Paula Deen's food, for all it's caloric, sugar, and lard content is probably a LOT healthier than what America currently eats, and buys, on a daily basis. It's at least HOME MADE, and won't sit on a shelf like that burger you ate at McDonald's last night, for 6 months or more, without decomposing!  

3. Paula Deen wants to profit from her Diabetes.  Well, so far, we really don't know if she has Diabetes. She's going to make an announcement on Tuesday, and it's very likely she might admit to it. (Though, for the future, I'd like to caution any one of you against using sources like The Daily Mail, and The National Enquirer as credible sources of news.) As of yesterday, afternoon,  Novartis had told CBS that Paula Deen had not yet signed a deal with them.  

All of this being said, if she did... who cares? Why does it anger anyone if she does? Just what exactly are the inferences here? Are you inferring she's going to just use pills as an excuse to keep eating like crap, and pushing bad food? Or are you inferring needing medication as a Type 2 Diabetic is a shameful thing? Or... perhaps you are inferring that people with Diabetes who take big pharma endorsements are amoral, or have sold out? Is this, somehow, any different than Omnipod, Roche, Sanofi Aventis, etc, sponsoring some of the biggest diabetes bloggers out there, right now, paying for all their supplies, and just flying them all over the place? "Yeah, but we spread awareness..." How do you know she's not going to spread awareness? How do you know all she's going to do is ask people to consider a new drug alternative that's actually working for her? Isn't that what you do, as well? Furthermore, how do you know this is actually not a good, extra tool, people with diabetes could benefit from hearing about? How do you even know she might not turn around, and make a show showcasing how you can still eat with flare, and with passion, WHILE managing diabetes? 

4. Paula Deen knowingly hid her Diabetes, so she could keep hawking her show. How dare she! How can she sleep at night! Look, let's face it. A lot of people are a bunch of judgmental jerks. These days, everyone weighs any kind of life altering event very carefully before announcing it to the public. Even things like getting married, or getting pregnant, are career enders for many women in the spotlight. I know Paula Deen is no BeyoncĂ©, but folks... If you loved something, with a passion, and suddenly someone gave you some drastic, dramatic, life altering news, you would need some time to think back, and re-evaluate your life. You want to regroup yourself, and your thoughts, before speaking to anyone. And have you stopped to think that she was also probably under contract with the Food Network? I'm sure she couldn't have stopped, mid season, and been like "F it! I got Diabetes now, so I can't go on..." Things like the menu, style, and theme of the show, are likely contractual stipulations. Besides... her health is really her own damn business. Not yours... and certainly not mine.  

5. Paula Deen brought this on herself. 
"There's no place for sympathy for type 2 diabetics, because factual scientific evidence has shown that it is brought on by themselves. " -- John Sampso, commenting on an MSNBC story.
And herein lies the rub of the matter. 

We, as a society, have decided Type 2 Diabetics deserve no sympathy. We have decided that Type 2 Diabetics are subhuman. Undeserving of sympathy, of support, of compassion, and worthy of our judgment, scorn, and policing. We have decided that Type 2 Diabetics, are basically, everything we hate about ourselves, or about the world's injustice toward our loved ones. How dare we lack self control, how dare we can't stay on our diet, how dare we don't lose weight, how dare we eat junk food, how dare we cook unhealthy food. How dare we EXIST. 

We can debate ourselves to the moon and back if someone's behavior contributed, or not, to their disease... (And when it comes to Paula, I honestly don't know. She is, after all, 65. Age is a huge contributing factor for Type 2 Diabetes. I don't know how long she's had it, but if she's kept it at bay until now, hell... GOOD FOR YOU, PAULA.) 

But, let me ask you this... If someone really did give themselves any disease (which I think we all know life is a little bit more complicated than that)... Does it really matter? 

Do they stop being worthy of our humanity? Or is it more... a projection of our OWN inhumanity?

Paula, honey... If you are a diabetic, WELCOME, and I am so sorry. With tears for the future journey ahead of you, I welcome you... Team Paula, all the way, baby. 








Thursday, January 12, 2012

Believe.

She said it four times. I couldn't look her in the eye the first three, but on the fourth time I had to look to make her stop saying it.

"Meri, you are doing a great job."

Why did she keep saying it? I'm doing a pretty good job. I mean, I'm no Madam Curie or anything. I know I can do better. If I put my heart into it, I can probably improve on those A1C's...

"Meri, you are doing a great job."

As I lay in bed last night just about to surrender to sleep her words echoed in my swelly brain. I know she wanted them to sink in, I don't know how she did it, but her tone was firm yet soft at the same time. I know she knows I am hard on myself. Was she trying to ease the guilt? Or was she really speaking the truth?

Nah. I rolled over and thought of all the ways I can improve our diabetes management at home. I was deep into my list and again, almost into dreamland, when somewhere deep in my subconscious I heard it one more time:

"Meri, you are doing a great job."

And this time I listened.

And for one brief euphoric moment I let myself drink in every ounce of those words. I felt the rush of letting those words rinse away years of inadequacy and if onlys.

My yoke was lifted and for those fleeting seconds I felt like I could fly. I allowed myself to believe and the freedom my soul felt in that small moment was so overwhelming, the tears came.

I don't know if this moment was sponsored by a higher force, or just my cough medicine....but let me tell you, I'll never forget that feeling in that moment as long as I live.

Don't worry, I didn't wake up with a big head this morning. I'm back to being my own fallible self who has a ton to work on. But I have to think that there is something to this believing thing. I wonder if believing I am doing a good job will take the edge off my guilt, or if it will only make me soft and lead to me slacking on my pancreatic duties.

I'm going to take a leap of faith, and sporadically give this believing thing a shot, and then return and report to you.

Who knows...maybe it will lead to a revolution for all of us! A new day of release from all that weighs us down!

There has got to be a better way. I've let guilt control me for so long I seriously think my body is deteriorating from it all. The words our endo said were so simple, but so powerful.

"Meri, you are doing a great job." I think I will hang those words on my wall to commemorate the small instant I truly believed. Maybe it will lead to more moments like that and I will be able to slowly but surely release my guilt in small, healing doses.

It's so flipping crazy...it just might work!


Tuesday, January 10, 2012

The Messy Language of Type 2 Diabetes

"Well, my husband is a board certified endocrinologist, and he told me that whenever a Type 2 patient is 'good,' and gets their numbers 'normalized,' that he removes the Type 2 Diabetes diagnosis, and changes it to a 'Metabolic Syndrome' diagnosis, instead, to help them out." -- Misinformed Mrs. Know-It-All.
The woman was very angry at me. How dare I suggest Type 2 Diabetes has no cure. And furthermore, I could go get a gastric bypass surgery, if I wanted. That, for certain, was also a cure. This, of course, was followed by a few "You people will never be like us; you need to stop comparing yourselves to us... You keep trying to act like we are the same, or have it worse than us, or that your disease is just as bad as ours" type of comments. I can't say that I blame her entirely for her misinformed, self righteous attitude. (Okay, I know she was being kind of a bitch. I'm just trying to be nice, here.)

This is the every day bread of Type 2 Diabetes awareness. Raising Type 2 Diabetes awareness is not easy. In fact, it's one of the most painful things I've ever had to do in my life. My husband certainly doesn't understand it, sees a redundant theme in it, and wonders why I don't just get out of it... since it's obvious I can't change the world. I've gone to bed crying, on more than a few nights.

The comment above, is of course, ridiculous. If there is a board certified endocrinologist out there, doing this, he needs to have his license revoked. Simple as that. He is doing NO ONE any favors. He is hurting his patients a lot more than he knows. I understand that insurance companies love judging us -- hey why not, the media has done a great job of misinforming the world, and insurance companies get their news just like the rest of us, and want to use that to safeguard their old, mighty dollar -- but the value of a 'small defense' against an insurance company does NOT outweigh the psychological harm and denial you feed into a person by acting like their diagnosis doesn't exist. Would these people dream of telling someone who had AIDS "If you're good, and your labs come back good, I'll change your diagnosis to HIV positive, instead?" Yeah, I don't think so! (It's not entirely a perfect analogy, but you get the idea...)

But people don't GET the permanence of Type 2 Diabetes. What's worse is that, while we preach day and night that this is an epidemic of epic proportions, our medical establishment does not act like it! (Oh, lots of people are acting like it, don't get me wrong... but it's, mostly, the people who want to scam us, and take advantage of us...) If this is such a serious threat, why isn't the American Medical Association, and the American Association of Clinical Endocrinologists, making it a priority to get doctors educated, and prepared, for diagnosing, and empowering patients? Why are they not working hard to give patients the weapons to fight back, and effectively not feel themselves the hopeless victims of this disease? (I know someone out there will claim that they are... but the proof, or lack of proof, is in the pudding, folks.)

  • Patients are out there, going undiagnosed, not because they don't regularly see a doctor (though some, undeniably don't...), but because doctors don't know how to recognize the signs of diabetes, or are UNWILLING to mark down a "diabetes diagnosis" in a patient record, thanks to insurance company scheming. More and more Type 2 Diabetes patients are being diagnosed by other medical professionals, such as gynecologists, urologists, dentists, and eye doctors. Often, a patient even gets misdiagnosed based on ridiculously old knowledge, like assuming that an adult could not be a Type 1 Diabetic, instead, leaving the patient vulnerable to Diabetic Ketoacidosis, and Diabetic Coma.  
  • Most doctors, especially Primary Care Physicians (or Family Doctors), get a MINIMAL amount of diabetes education in medical school, and NO extended diabetes education throughout their careers. Diabetes information, care, and knowledge is growing about as fast as technological advances are... why should doctors remain in the dark, if we, as patients, can't afford to do so? Some doctors are going by on 20, and 30 years of OLD diabetes education! As a consequence, when a diabetic patient gets diagnosed, thanks to this lack of knowledge and insurance company scheming, patients get denied access to specialists, denied access to certified diabetes educators, denied access to dietitians, denied access to insulin, etc. Doctors, ROUTINELY, give NO information or direction to a newly diagnosed Type 2 Diabetes patient, leaving them vulnerable to whatever might be out there, on the internet. There is something vastly wrong with an insurance company that denies access to a dietitian, or certified diabetes educator, but is happy to approve gastric bypass surgery. In other scenarios, doctors give patients extreme misinformation, such as "STOP eating ALL fruit because they are high in carbs." Ummm, hello, not all fruit is made the same... We need to learn to MANAGE food, not put the fear of God in people.   
  • The medical establishment is allowing itself to be ruled by the treatment guidelines of the American Diabetes Association -- an Association with clear conflicts of interest, per a recent study done by the Mount Sinai School of Medicine, and which has been SLOW AS MOLASSES in embracing the future of diabetes tight control, and management. What's worse, they have GREATLY contributed to diagnoses getting delayed and delayed. This is WRONG and unacceptable. Doctors and Endocrinologists need to be educating the ADA, and not the other way around! 
  • Instead, more and more "doctors" and "medical professionals" are taking advantage of the serious need for diabetes patient education, as a door to write books, push supplements, spread their own pseudoscience, and MAKE MONEY. 
Don't get me wrong, here. I am not anti-doctor... and I understand that doctors are humans, too, who can make character and judgement mistakes. There are some AMAZING, well educated, empowered doctors out there, working hard to help empower diabetic patients, and help out in the online diabetic communities... But the overall lack of education, and standards, in general, for our medical professionals is wrecking havoc in our lives, as patients, and it's wrecking havoc in our ability to garner empathy, build awareness, and motivate outsiders to help donate their time and money in the hopes of finding a cure. Who donates to something they think already has a cure? 

Dear doctors, you have MUDDLED the language of Diabetes, and made it a messy affair. Every time you get on TV, write a self serving book, misinform a patient in your office, you MAKE IT HARD for us to live, control, master, and grow, with this disease. How can we, as patients and advocates, have power behind our voices, if you tell lies to people with an M.D. next to your name? Who is going to believe US over you? 
  • STOP making up statistics to sell books! No, 50% of Americans don't have diabetes... 33.8% of Americans are obese, but only 8.3% of Americans have diabetes, and that number INCLUDES all types of diabetics, including the undiagnosed. Anyone who claims these things NEVER quotes any real studies, double blinded studies, studies published in any legitimate journal of medicine, of any kind. They make up catchy terms to feed on people's biases, and fears for self serving purposes. Stop getting on Dr. Oz to sell LIES. Broccoli is NOT going to cure anyone's Diabetes. (I'm looking at you, Dr. Hyman.)  
  •  STOP telling people gastric bypass will cure their Diabetes. It will most certainly NOT. And what pisses me off the most, is many of you have gotten on TV, and the news, and told everyone that it is, and that it's 100%. Now I can't frigging walk anywhere without some moron asking me why don't I just get bypass, or some other form of that. Well... don't mind if after being called misinformed, and uneducated, by people the likes of Misinformed Mrs. Know-It-All, above... that I get angry when articles like this hit the news, FINALLY admitting the truth... No I am not in crazy denial! It is NOT a frigging cure, or a guarantee of anything! Remission is NOT a cure, it is tight control. And this surgery is a Russian roulette! And, hello, I can improve my OWN care without a surgery, and *I have*, thank you very much. Someone should staple your mouth, instead. :S 
  • STOP throwing terms like "reverse", "remission," and "cure" around, in exchange for tight control. Even a Type 1 Diabetic can achieve tight control, and reverse complications, and that does not mean they are cured. Type 2 Diabetes is a progressive illness that requires vigilance, and ongoing monitoring, and with time, those medication free moments will be just a thing of the past, and we will need oral medications, and insulin, to keep healthy, and in tight control... Most full blown Type 2 Diabetics will eventually need insulin, in their lifetime. We may be able to prevent complications, or even slow or 'reverse' the progress of some of them, but there is NO reversing or curing Type 2 Diabetes. Stop bullshitting people. We are big boys, and girls. We can deal with the truth.
  • STOP telling people that losing weight will make their diabetes go away! Stop telling patients that they are cured, while they are in your office! These are harmful lies, for all the reasons I mentioned above. Weight loss does NOT remove Type 2 Diabetes. It only helps MANAGE it. Type 2 Diabetes has NO CURE. 
  • STOP telling people they can prevent Type 2 Diabetes. NO ONE can prevent anything. This creates feelings of insecurity, self blame, and inadequacy when a person gets diagnosed with diabetes despite having done everything in their power to change their odds. Why not simply talk to people about REDUCING THE RISK of getting Type 2 Diabetes? Isn't that, instead, a little more realistic? Diabetes is NOT a zero-sum game. Everything has risks. Nothing is black and white. 
  • STOP equating diabetes with obesity. I GET IT. I am not a moron. I know that there is a very STRONG link with diabetes and obesity. It is a risk factor. Obesity, however, does not mean diabetes.  There is NO SUCH disease as "Diabesity." Obesity is it's own disease with its own complications, and Type 2 Diabetes is an autoimmune and metabolic disease. There is no known cause for Type 2 Diabetes. Why not all obese people develop an autoimmune response that leads them to Type 2 Diabetes? No one knows. And why are not all Type 2 Diabetics overweight? (Sure, some are misdiagnosed, but many are not...) The fact is, no one knows. There is also a very strong link between diabetes and pollution and pesticides, BPAs, drugs (such as statins, beta blockers, antidepressants, antipsychotics, steroids, etc.), other illnesses (like Polycystic Ovarian Syndrome), surgeries, drinking, smoking, etc. Why can't we discuss ALL of those risks? Why can't we be realistic about Type 2 Diabetes? Why can't we speak to people with the entire truth? There has been a 400% increase in antidepressant use by Americans.  Don't you think THAT has had more than a little hand in raising the Type 2 Diabetes incidence? 
And another thing... if it's so easy for you to tell a patient with Polycystic Ovarian Syndrome that it would be helpful in controlling their disease to "eat a balanced diet low in carbohydrates," WHY IS THIS SO FRIGGING HARD TO TELL TO A DIABETIC PATIENT, AS WELL????? (Oh, that's right... it's because pills to treat PCOS don't cost an ARM AND A LEG, and don't make you any kickbacks.) It's not that that is all that is required for better health, but come on, throws us a bone! People are out there avoiding sugar, and all fat, thinking this is what made them diabetic, and thinking what we eat in itself gives us diabetes! It is NOT. 

Doctors, this may not be entirely your mess... But you sure have lathered yourselves with GUSTO with the manure of laziness, and greed. I hold you PERSONALLY accountable for the state of our nation's health when 2050 rolls around. Get some guts, and fight on our behalf.  

 

 


 

Monday, January 9, 2012

onward.

I'm real people sick.

My husband is out of town today and I am on my own. So as I get ready to bring the boys to school I am VERY careful to have them all prepared diabetes wise so I don't have to bring my ashen white face and shaky aching body out of the house again.

I have to bring them to school. But I'll be darned if I'll go back to those schools today because of a simple oversight on my part.

I'm not sure what their supply boxes look like at school, so I carefully pack their backpacks to replenish them.

Just in case.

I give all three boys two extra vials of test strips.

I give all three boys apple juices for lows.

I pack all three boys cell phones and made sure every one of them was charged.

I checked all three pumps to make sure they were full of insulin and had battery life.

I checked all three pumps to make sure they all gave themselves breakfast insulin.

I check that the meter in J's backpack still has a viable battery after sitting unused for two weeks.

I double check all backpacks to make sure they put their lunches inside.

I covered it all.

Zipped them all to school, practically threw them out of the car, came home and as I walked in caught in the corner of my eye a place in the living room where the sun was hitting the couch...the perfect remedy for my chills. I grabbed a warm blanket, staggered into the living room and winced at the sight of myself in the entry mirror. Pathetic. Not pretty. That is all I have to say about that.

"Thank goodness I don't have to leave the house again until 2:00." I say to myself. "Diabetes won't be messing with me today!" Actually, that was thought up sans the exclamation mark. There was no energy left to be perky. I didn't sleep at all the night before.

As I laid down I was grateful despite myself. I thought how the boys feel nauseous from ketones and endure so much, I thought how I have acquaintances on chemotherapy who feel nauseous for days, weeks, months. I thought I won't be sick forever and that is a blessing.

And then I slept. In the warm glow of the morning sun, content and satisfied until the littles called me with their snack time numbers at 10:05.

B: 121

L: 127

My head aches and my throat feels like I swallowed a parade float, but I can rest! Joyful day!

And as I lay my head back down on my pillow, my phone says, "DING!"

That "DING!" is a text.

I reluctantly, slowly, pick up the phone and there in black and white is a text from my oldest son...who does not have diabetes:

"Hey I forgot my sax. Help please!"

Sometimes I forget I'm a mom, not just a pseudo pancreas.

Onward!

Actually today, it's more like...

onward.

Friday, January 6, 2012

Awareness, Acceptance, and Perseverance

I really hate year end resolutions. Call me a little full of myself, perhaps, or a little 'pessimistic' if you want, but I find it beyond silly how people don't realize they're being played like puppets, every January. I mean, really? Come on... How can you not tell?? You can't seriously believe you can get on a cereal diet, a milk shake diet, a soup diet, a sprinkle crap on your food diet, a yogurt diet, smoke water vapor cigarettes, etc, and think that all your weight/health issues, whatever else, will magically just melt away... Or paying $200+ for some incredibly UNREALISTIC exercise regimen with some guy, ripped beyond belief, who probably DOES NOT use this video at home, and spends 20 hours at the gym, every day, GETTING PAID to be there.

What's worse... is that people have changed the 'motto' from "resolutions," to "goals," thinking that by changing the name, and breaking down the resolution into goals, this is somehow going to help. Or... giving it silly acronyms to make it easier to remember, or deal with. People, please! Your life is NOT an acronym. I can't even remember what DSMA stands for, half the frigging time! SMART goals my ass! How about actually being SMART about how putting ourselves on the spotlight has never worked for anyone? Spotlights are for people who pretend: Actors.

Let me see, how can I describe it a little better for you... I remember when I was 7 years old. The weight issues related to my PCOS had been taking quite the foothold in my body, and clothes were really not fitting me so well. I remember visiting shops looking for a First Communion dress, with my mother... and she'd openly, loudly, complain to the store clerks how she was tired of me being so overweight and me not being able to fit into things. Then, of course, the clerks would chime in... sharing some nonsense, or unhelpful comment or another... like "Honey, your mom wants to be able to dress you like a little princess, so you need to stop eating, okay?"

I am sure you have your OWN equivalent of being embarrassingly put on the spotlight.

Well, when you embrace a new year's resolution, goal, or what have you, you are doing THE SAME THING to yourself... It's very similar to you putting yourself on the spotlight, to either your own self perceptions, or the whole world: they'll constantly ask you how your goals are going, if you've stayed on them, if you've cheated, try to get you to cheat, or POLICE your behavior as much as they can because they will all see themselves as IN THEIR RIGHT to come and make sure you are being a GOOD GIRL. What's worse is that you end up feeling like hell, or embarrassed in front of others, when you do stumble, and ruin that "perfect" new year slate.

Let me suggest to you... an alternative: Living life... with a little awareness, acceptance, and perseverance. 

Greaaaaaat, another empty motto, you might think.

Except... It's not a motto.  It's reality. If you stop, and pay attention, life's themes sort of start revealing themselves to you, one at a time. Yes. Life has themes. And those themes require, you guessed it... awareness, acceptance, and perseverance.

If you are binging, ignoring your diabetes, if you are... smoking, not exercising, or whatever else that binds you... Those behaviors are NOT your themes.  The themes are the underlying attitudes, and 'truths' you have allowed yourself to believe ABOUT yourself and life, which are enabling your behaviors.  And you can't fix those on any given 1st of any January, on any given year. It is SILLY to try to spend all kinds of time mopping the basement, if you don't first fix the leaky pipe.

If we are not aware of our themes, we can't fix them. In order to effect positive change, in our lives, we need to have an ongoing awareness, and an ongoing dialogue with ourselves, and an ongoing acceptance. Do NOT abandon yourself. 

We need to come to points, and places, where we accept our emotions, and try to help our inner persons cope with WHY we feel those emotions. I'm not talking about silly little 'goals' here, like "I resolve to put the toilette lid down, every time, from now on..." I am talking about the things that form, and shape, and cement our daily lives... into the WHO we are, right now... and tomorrow. 

If we don't know our themes, we can break that resolution down into 20,000 goals, and we are still destined to FAIL and be right back at square one, next January. I KID YOU NOT.

Listen to me, here, people...

  • Your internal dialogue... is not to be shared with unhelpful people. This conversation is between you, and yourself, and perhaps the 20,000 other people who might read your blog (God help me). 
  • Your internal dialogue has no beginning, and it has no end. It is happening right now, as we speak, yet you may go about your daily life ignoring it.
  • Your internal dialogue is about perseverance... but once you learn a truth, you cannot unlearn it. It's like reading a book. Once you learn a deep truth about yourself, well... there's no turning back. It sort of magically sets you free... (I used to love Burger King. Burger King gives me EXTREME gastric upset, probably the equivalent of ten Metformin pills. After 4 or 5 episodes of this, I can guarantee you I shall NEVER unlearn this. It is NEVER up for debate.) 
  • EVERY day is a new year. Seriously. On any given day, you can say to yourself... "A year from now, I'll wish I would have started today." There is no reason to assign yourself a magical start date to pass/fail yourself like a child needing approval from Mrs. ShameMyself. 
  • A new year is NOT meant for these things! A new year is meant for you to EXAMINE your life: the things you are thankful for, the blessings you have been granted (by life, God, however you see it), and the LESSONS you learned from your trials and challenges, and your mistakes. YES, YOUR MISTAKES. Be thankful for those mistakes.Those lessons are probably the things that will help you with your life themes! Those lessons have already changed, and shaped your life and behavior, for a better 2012, without pre-assigned resolution. If you resolve to do anything, anything at all... Resolve to really EXAMINE your life with some amount of prudent, sober acceptance, every new year's eve. Heck, EVERY DAY. 

Life is not about those boxes people want to put us in. Don't be the idiot debating whether the glass of life is half full, or half empty... when there's obviously more in store, in the fridge. 








Thursday, January 5, 2012

Love the one you're with.

I don't want to overly simplify my feelings towards diabetes. Complicated doesn't even seem to scratch the surface. All I know is that for now...diabetes is staying put. And since that is the case, I will now endeavor to riff off the old Stephen Stills song, "If you can't have the pancreas you love honey, love the pancreas you're with."

I've spent many a year loathing diabetes and its long line of insane protocols. When my third was diagnosed I'm pretty sure I melted into a puddle of tears and bitterness for a good nine months. Looking back, those deep seeded feelings of hatred and helplessness have only brought me three things: Heartache, TMJ from clenching/grinding my teeth, and Carpal Tunnel from writing it all out on my blog. Letting go of the anger isn't easy, in fact, I don't even know if letting it ALL go is possible. But what I do know is coming to terms with this disease, ACCEPTING this disease, loving our life WITH this disease...well that yields things like a better night's sleep, and a more relaxed me.

My children and my spouse respond to my cues. If they see me worried...they are worried too. If they see me angry and upset...that angers them and upsets them too. Am I walking around the house singing praises to diabetes? Heck no! But am I trying to put it all into perspective? Yes.

I understand that everyone has different perspectives on everything. To one of us 80 is the perfect number, to another 100...to another 150. We all are individuals with minds of our own. In the spirit of New Year resolutions, I'm going to take what I know and mold it into something more beautiful. I challenge you to try too.

I know diabetes is hard.

I also know that enduring hard things molds us into more empathetic human beings.

I know that diabetes hurts.

I also know that the sensation of pure torture I feel when pricking my virgin fingers is completely different than the sensation my boys feel.

I know that diabetes is expensive.

I also know that my boys healthy futures are worth every penny of promising technology I can find.

Perspective.

Fighting diabetes...hating diabetes....it is ok. But letting those things take over is not. Hate is like acid to our body, literally and figuratively. It isn't healthy to live with perpetual sadness and helplessness.

Sometimes I just need to stand up and say, "They are ok! I am Ok! We will survive!"

Saying it out loud is liberating. Believing it is life changing.

We can love our lives with diabetes as a part of it. We can accept our lot in life and find joy in the little things even with diabetes strolling along side. Diabetes will always will be with us...which leads me back to the beginning...

Maybe our lives aren't' everything we imagined they would be. But after diagnosis it is possible to imagine a new life. Can't we love that life too? Can't that life be just as amazing as the first? It may be a bit more complicated, but with diabetes in the mix, our victories are sweeter and the good days are triumphs in themselves.

I wonder if in the end, It all comes down to loving the life you're with.


 
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