Friday, March 30, 2012

A little advocating goes a long way.

I hear it all the time.
"I wish people were more educated about diabetes."
"I wish there was more advocacy for Type 1 Diabetes."

"I wish our voices were heard."

It might not seem like it, but at this moment a small wave of advocacy has formed off the coast of California.  A group of bloggers and advocates from the DOC are meeting with the Bigs at Medtronic and they are making your voices heard.  They are telling them your hopes and dreams...and Medtronic, I am sure, is echoing it all back to them.

You see, it may not be obvious now...but there is a small army on the move to change the world and their perception of diabetes.  You might not be aware of them...but by the time I get done here, I hope you will feel a bit more uplifted knowing there others out there working to get the word out.

On my sidebar there is a button that says "I am a member to DiabetesAdvocates."  What do they do?  From the website it states:  "We help people who have diabetes and their loved ones realize that they are not alone. We help the diabetes community by sharing our personal experiences, spreading the word about diabetes news and treatment options, and helping to inspire a dialog between a diabetes patient and their medical team. We accomplish this through diabetes blogs, diabetes social communities, videos, radio shows, books, newsletters, and live events.  In 2011, the Diabetes Advocates collective will reach more than 6,000,000 people touched by diabetes."

If you read the list of people in there you will be amazed at the reach this community has.  Within its pages you will find Cherise, who founded DSMA, which stands for Diabetes Social Media Advocacy.  There is a Website and a RadioProgram, and an amazing Twitter Chat that happens every week.  It is an easy and fun way to get involved in the community.

Also within the DA pages you will find Kim Vlasnik.  She founded the "You Can Do ThisProject."  It is an awesome collection of videos that encourage and let you know that YOU ARE NOT ALONE.  How powerful is that?

There is Manny Hernandez who founded TuDiabetes and The Diabetes HandsFoundation.  He is pretty much the king of advocacy.  :)

And is Brandy Barnes who founded Diabetes Sisters.  Diabetes Sisters is a national nonprofit organization whose mission is to improve the health and quality of life of women with and at risk of developing Diabetes; and to advocate on their behalf. The organization offers a variety of online and in-person programs focused on the unique needs of women with Diabetes.

I could just copy and paste the entire website onto this post, but I think it would fun for you to explore the website yourself and discover the many many voices out there.  They are all raising awarness, and their reach is far and wide!

One small nugget of advocacy can cause a ripple effect.  It creates a bigger and bigger understanding throughout our community and our world. 


Just last year many Diabetes Advocates flew to Dubai for the World Diabetes Congress.  They were invited there and the ripples of their visit is still being felt throughout the world.  Our voices may seem small, but they are being heard.

I know I'm not in Dubai.  I know I'm not reaching the masses and educating on the scale that I wish I could.  I'm not today...but maybe someday.  And until then I will type my voice and my feelings here on my blog.  One small step at a time.  One ripple effect at a time.  Helping one person at a time.  It all makes a difference.

My heart hurts that I had to miss the advocate forum in So Cal today.  But I'm overcome with gratitude for the people that ARE attending.  I know they will pass along the information we want Medtronic to hear oh so badly.  The wave of advocacy is gaining momentum. 

You can be a part of it too.

Speak up.  Say something.  Hug someone and tell them they are not alone.

It all makes a difference.

It really, really does. 

(To follow the DOC at the Medtronic Advocate Forum today,  to to twitter and follow #MedtronicDAF)




Wednesday, March 28, 2012

They bleed.


As a young girl, I was hardwired to believe that the sight of blood was a bad thing. Bright red meant danger.

Blood meant Band-Aids, Neosporin and warm washcloths to cleanse the wound.

Blood meant that someone was injured. It meant pain. It meant tears.

It meant that the protective armor of a scab would come to protect the wound while it heals.

Blood was never a good thing.

And now here I am, a mother of three boys with Type 1 Diabetes. My fearful perspective of blood has been diluted. So much so, blood doesn't evoke the feelings of danger that it once did.

Blood is now a symbol of the boys testing their blood sugar, and as such...it doesn't faze me.

I washed blood off the front door today. Seriously, who does that?

How did it get there?

Was it from a quick test before running out the door to school?

Was it from a quick test before riding a bicycle?

Was it from a quick test before running out to scouts?

I don't know. All I know is that the blood is a good thing. It means they are testing. And testing means safety.

When I wash the blood off counter tops, cabinet doors, light switches, and knobs...my memories often flicker back to the time when blood would startle me.

And after I remember, I then wonder what another person would think if they saw it.

Would they be horrified? Would they think it was disgusting?

I assume that they would.

Unless it was the blood of their own child, deep down I am assured they would feel differently if that were the case.

Part of me feels like I am supposed to be disgusted. But the numbness doesn't allow me to feel that way anymore.

Blood is now sacred. Every drop I see fall...every drop I clean up...I have the deepest respect for.

Blood doesn't mean death or fear or harm as it once did.

Blood means life.

And my boys live.

The blood on my door tells me so. My soul stirs with happiness because it is so.


(A blog post all about diabetes?  How is that for Normaling?!  Booyeah!)

Tuesday, March 27, 2012

It's Type 2 Diabetes Alert Day? Really?

I don't keep track of all the designated days for things... and in fact, often, various organizations just randomly make up a day, out of the blue, whenever they want to promote something... (Not necessarily a bad thing, really.)

So, apparently, today is Type 2 Diabetes Alert Day. 

The American Diabetes Association wants to create awareness of the risks a person might have for developing Type 2 Diabetes... by having them answer some basic, simplistic questions. Yeah, pretty basic and simplistic:

  • Are you old?
  • Are you a man or a woman (because apparently men are more screwed than women)?
  • Do you have high blood pressure?
  • Did you have gestational diabetes (which should be a big DUH, right)?
  • Did you have a mother or father with Type 2 Diabetes (another big DUH)?
  • Are you a fat, couch potato? 
Yeah, that's about it. 

Don't get me wrong... there are some people out there who still, to this day and age, don't realize they are at risk (even with the big indicators above). There are, also, a lot of minority communities who receive very little information, and outreach. 

But, the thing is... these tests don't do much for people who truly are at a HUGE risk, for other reasons. Where are the questions about "Do you have Depression, or are you on anti-depressants or other mood altering drugs?," "Do you have Polycystic Ovarian Syndrome?," "Do you take statins, and have high cholesterol?", "Were you ever exposed to Agent Orange?," "Do you take steroids?," etc, etc. When we keep these questions OFF of the radar, what we do is keep on people's minds the notion that only fat people get diabetes, and that all they have to do is stop being a fat person.

There are a LOT of people, more so than we think, getting diagnosed when NOT fitting any of these descriptions. Just by the sheer number of the people I speak to, every day, if I had to take a sample... I'd say a huge chunk of them were NOT obese when diagnosed, and not inactive. (A small minority of them are misdiagnosed, and are Type 1.5 (or LADA), instead... but it's just a minority.) 

What's worse is that we have so over-abused this word, prevention. 

NO ONE can prevent diabetes, of any kind. What we can do... is REDUCE OUR RISK for Diabetes. Reduce our ODDS. We look at diabetes in the face, and we try to call it's bluff. 

That's what we do. 

Again, don't get me wrong... PLEASE CALL DIABETES' BLUFF. Fight, with tooth and nail. Maybe you'll be one of the ones who DON'T win this lottery. But, please understand that at the end of the day, it really is still... a lottery. 

Now, yesterday, in preparation for Type 2 Diabetes Alert Day, the American Diabetes Association asked their "fans" if they had success stories to share; stories of having learned their risk, or having been diagnosed with Type 2, and taking control. (Suspiciously, that post is gone, now.) 

I assume they may have gotten many responses like this... The ones someone like ME would have given: 

Dear American Diabetes Association,  
When I was diagnosed with Type 2 Diabetes, the first thing I did (like any other person newly diagnosed), was to go visit your site. I studied it quite a bit... and gleaned some buzz words like "tight control," and goals of keeping my blood glucose under 180 mg/dL.  
Then I thought to myself... wait a minute? 180 mg/dL is awful close to 200 mg/dL. That sounds... quite dangerous and irresponsible. That can't be right...  
So I googled, more, and more... and even the American Association of Clinical Endocrinologists suggests keeping blood glucose levels under 140 mg/dL, and preferably, as close to normal as possible. 
I understand blood glucose goals are individual, and should be consulted with one's doctor, ADA... (Some of us have other illnesses and hurdles that might make tighter blood glucose control difficult.) But you are giving people a very risky, and low MINIMUM hurdle to shoot for, without much other guidance!! WHY???? Please excuse me if I don't immediately reject the theories that you have deep conflicts of interests with big pharmaceutical representatives lining your pockets.  
Now, dear ADA... you claim you don't embrace any particular diet, but say we should ALL just eat healthy as healthy should be considered for ANY person without diabetes, without further explanations... Honestly, ADA, shame on you. We all know that's just veiled talk for telling people they ought to eat a diet made up of 60% carbohydrates, rich in fruit, starchy grains, and vegetables. (Yes, a world in which corn is good for your health.) It sounds charming, and wise... But even to my mind, back then, that was just hogwash. Normal people don't have a BUSTED pancreas... If this were the case, then hey! Everyone, throw your glucose meters, oral medications, and your insulin away. 
So through more research of my own, I found out I could eat following the guidance of my glucose meter, instead. The way it SHOULD be. Oh, imagine that...?! I should eat meals, and use my glucose meter to TEST those meals, to see if they exceed 140 mg/dL! And OMG, instead of just eating whatever because it's "healthy..." Wow, what a concept! I'm sorry, but oatmeal, for my diabetes, is NOT healthy. Hope Warshaw might lie -- but my glucose meter NEVER will.
Don't get me wrong, ADA... some people DO need meds, as their poor pancreases are too pooped out... But why the hell should I put the BURDEN of my care and how well I do, on just meds and insulin? Requiring more and more meds as time goes on, and more and more insulin... and then, oh no... developing complications I could have delayed, or reduced a risk for? I would be just accelerating the damage, and pancreatic beta cell failure, by willingly keeping myself at 180 mg/dL goals all the time.. when I could help it.
It's not easy, ADA... but why should we lie to people and make them believe it is? You know what's harder? DIALYSIS. NEUROPATHY. AMPUTATIONS.  
Then I thought to myself... "Hey? Who the hell are the American Diabetes Association, anyway? They're not even endocrinologists! What THE fructose!"  
Yeah, that's right...  Just a bunch of six figured salaried talking heads for big pharma sponsored researchers.
So, in essence, American Diabetes Association... here is my success story: I went and read your site, and then I did the opposite. 
  • I made a goal of keeping blood glucose levels as close to normal as possible. 140 mg/dL or less, at 1 hour, and 120 mg/dL or less at 2 hours... with 140 mg/dL at 2 hours being the ABSOLUTE highest I will ever tolerate.
  • I decided I needed to find the TRUE point at which my blood glucose levels were spiking, and not just blindly test at 2 hours, thinking everything's right. I test at 70-75 minutes after taking the first bite, for most meals, with some exceptions. 
  • I test *EVERY* meal I eat, and every snack. I do not assume ANY food is healthy for me, just because Hope Warshaw, or anyone else, says so. If I can't (at the most) easily burn it off with exercise, I WILL NEVER EAT IT. 
  • I reduced my carb intake to 80-100 carbs a day. 15 or less for breakfast, 40 or less for lunch, and 30 or less for dinner... with an occasional 15 or less for a snack.
  • I did NOT go rushing to get on 20 pills, before even having the illnesses. Statins, and blood pressure meds, raise blood glucose levels and create other risks. Instead with my new diet and carb control... my blood pressure and cholesterol went right back to normal, on their own. Yes, ADA... you recommend diabetics keep their blood pressure under 130 systolic... but I keep mine between 100-110. 
  • You encourage people to just go lose 10 lbs... as if that's going to fix their diabetes. ADA, I've lost 80... and that hasn't fixed my diabetes, but it's a heck of a LOT better than if I did it your way.
On this Type 2 Diabetes Alert Day... I'd like to challenge you, ADA, to perhaps heed an alert of your OWN: A different approach is needed for treating type 2 diabetes.  People need to be diagnosed SOONER, by more thoroughly educated medical professionals, and not be kept in such obscurity.

When will you get with the program? Millions are waiting.







Monday, March 26, 2012

Normaling.


Ryan slipped off to bed early the other night, so I grabbed a blanket and spent a couple hours watching 30 Rock episodes OnDemand. I'm not an avid watcher, but the sitcom provided me with a host of mindless giggles, which totally served its purpose of keeping my thoughts on lighter things.

In one particular episode, Jenna was uber excited that her boyfriend was coming back into town. Apparently these two had a pretty hot and heavy/crazy-like relationship, and as such she was expecting a long adventurous night with her man. Turns out though, they were both so tired from their long day they ended up falling asleep before anything crazy could happen. The next day, in an effort to make falling asleep seem not so lame, they gave what happened a "kinky" new sub name: "Normaling." They spent the next few weeks doing things that only "normal" couples would do. Going to Bed Bath and Beyond, and spending hours deciding where the best place in the living room a certain chair would fit best. In the end it was realized that "Normaling" was really them transitioning into a steady, normal relationship. It wasn't this exiting cutting edge phenomenon after all...

It seems to me that this is what Ryan and I are doing right now.

We are Normaling.

We spend our days thrilling in the fact that we are doing perfectly normal things. It seems unnatural these days to go to the store and have a conversation about the succulent tastes of different kinds of oranges. It seems unnatural, but we partake anyway. Awkwardly, yet happily in what seem to be our "roles" in this episode of our life.

We are playing the part of normal.

"How are you feeling, Babe?"

"Hanging in there. How about you?"

Normaling.

"What would you like for lunch?"

"Oh Lucchesi's deli sounds good to me!"

Normaling.

"Oh, we are out of eggs."

"I'll run by the store later this afternoon."

Normaling.

Blogging this post right at this moment?

Normaling.

It all FEELS like we are reciting lines from a script.

We know how our days are supposed to play out. We know our cues, we know our lines...and we spend our days convincing each other that our performances are natural rather than scripted.

I know as we continue to play our parts, life will gradually become less awkward.

As an extension of all this normaling I feel as though I'm an understudy in my pancreatic duties as well. Changing sets, counting carbs, nighttime checks...they don't come as naturally as they used to. There's no flow.

The other day the boys ate lunch and I didn't have them check their sugar before. I know, "GASP!" I even made sure there were strips with me before we left the car to go into the restaurant. But as we sat at the table...everyone was so happy, and so talkative...I got lost in our "Normaling," and never had the boys do their checks. Which...I know...there are crazier things...

But , it just serves as a small example that we need to relearn "our normal."

No, I don't think it is a bad thing that diabetes is on the back burner keeping warm while we are feasting on normalcy. I just hope I don't faint when the leftover A1C's come looking unappetizingly warmed over in a tupperware bowl next month.

Next month seems years away though.

Right now I can only think about today.

I'll worry about tomorrow, tomorrow.

I think under the present circumstances...that is what a normal person would do.

I think.

I'm still trying to figure this whole "Normaling" thing out.


Friday, March 23, 2012

Diabetic Joke Fail?

I'm a little conflicted, lately.

I have a pretty good sense of humor, if I do say so myself. (You have to have a sense of humor to call yourself "The Angry Type 2 Diabetic" and still be able to handle every preachy a-hole out there thinking you're just bitter about your diabetes, and needing to get some anger management classes...) 


But... what exactly is OKAY as a diabetes joke? I find myself... somewhat at odds.

Let's see... at the "feather weight" level of jokes are references to the things we do every day, and that's awesome. I think it definitely HELPS heaps when people can sort of join in with us on how we see the world... Whether it's our struggles, or just things that make us go "hmmm..."


Then there are expressions, or tattoos that might encourage some mild debate... like "Sugar Free," and that can be okay, as well. This tattoo picture has provoked some argument and discussion in my Facebook diabetes group, and folks have gotten a chance to weigh in on the irony/misconception/message, however one might see it.

I kind of actually see it... as a way to tell 'The Sugar,' aka Diabetes, that I am not its slave. (Lots of people HATE IT when diabetes is called "The Sugar," by the way. Don't be surprised if when you call it as such, objects go flying in your direction.)


Now, a while back, the satirical, fake news publication, "The Onion," made an article making fun of Jay Cutler, a football athlete with Type 1 Diabetes... Lots of folks interpreted the article as though it was outright making fun of Type 1 Diabetes, when in fact, it seems they were really just trying to call Cutler a whiny bore... albeit, in a poorly thought out manner. They could have just referenced regular kids, NEVER mentioning diabetes at all, and still gotten the point across. (Me thinks those people, funny as they are sometimes, need a needle jab or two on the behind.) Clearly, this kind of humor is unacceptable... or is it? Is there a point when we can divorce our fears of losing our loved ones, or our own lives, so we can laugh at a joke? Yeah, on paper, this all seems good and well... in reality, I'm gonna tell you to go f off with that joke. lol

Then there's jokes where people laugh... uncomfortably so. Like these ones... Or the ones where people joke about "falling limbs" from eating too much candy.  These types of jokes get most diabetics riled up... because they showcase a terrible misconception that we can't have sugar, or candy, or worse... that we're all just going to lose life and limbs from even having as much as one bar too many. You'll find most diabetics standing up against these types of jokes, and I admit, they make me pretty crabby...




There's also the "well intentioned" (or so I try to tell myself), yet still incredibly ignorant person who'll reply something along the lines of "Oh, that's just Type 2 Diabetes... There's two kinds, you know." I think THAT makes me angrier than the joke itself, really. How is correcting one stereotype, by feeding another, suddenly acceptable in any way?

Then there's the McDonald's jokes... I'm sorry... but if you can't laugh at a candy bar joke, I'm not going to laugh at a Diabetes/McDonald's joke.

So... did all of us who got Type 2 Diabetes go pig out at McDonald's or something? Really? Or, are we trying to say anyone who eats at McDonald's is going to get Diabetes? Do we want to do that to Type 2 Diabetics... by spreading the myth that pigging out at some favorite fast food place is just going to give someone Type 2 Diabetes eventually or automatically, somehow? Never mind that out of those 300 million people, only 8.3% have diabetes (including ALL types of diabetes, and the undiagnosed)? Never mind that there are MYRIADS of ways to get Type 2 Diabetes, though the media will not cover ANY of them?  

Obesity does NOT cause Diabetes. Lots of fat people are going to live long, and full lives, without so much as ever having to prick their fingers... They will NEVER get diabetes. Stop drinking the media Kool-Aid and trying to make yourself feel better by making fun of MY diabetes. 

Was I supposed to laugh? *MY* bad.

Wednesday, March 21, 2012

You Are Enough...

It's a long, and lonely walk... 

The air is cool, and heavy with the various smells of earth and sulfur; and night crawlers have begun to pepper the sidewalks with their icky slithering. Only the one or two headlights are seen, and the occasional paperboy might go by...  Sometimes, you might even see a cop car. It's 4:05 AM, and very few are the souls who share my 45 minute journey, once or twice or thrice a week, as I make my way to work down our town's main avenue.

I don't like the journey; yet I do.

For a single, lonely woman... It's a dark, and scary journey. Imagination gets the best of you and you think anything and everything will jump out of some bush, and get you. You think that the car that just abruptly stopped in front of you means to hurt you, when it's really just a paperboy... just doing his thing.

You even get a little whiny during the journey: If only I had a car... if only I had a better job... Why didn't I do my Master's when I had the chance... Why didn't I just become a lawyer when I had the chance.. Why couldn't I have found a rich husband, so I could just sit on my can, and eat bonbons all day... *Really*

(I didn't say ALL my whining would be rational...)

Still, the 45 minute journey is a necessary time of introspection, which might otherwise go very much avoided thanks to our gadget-obsessed lives. (Sure, I could meditate while exercising at a comfortable time of the day, but I might not be as willing to face my fears as when they are staring at me so blatantly in the face.)

Our fears and inadequacies often haunt us; derail us from goals. Sometimes, it's outright paralyzing.

I have to admit that I'm a very dysfunctional adult. I'm riddled with mistakes to fix; mountainous obstacles from self made messes which I'll need to climb on my own... I admit I'm scared...

  • Scared I'll never find a good career path, or even an inclination for one;
  • Scared I'll never fix my credit and medical bills;
  • Scared I'll never be loved and fully accepted;
  • Scared of my impending divorce;
  • Scared of not having health insurance;
  • Scared that I don't see myself as an adult;
  • Scared of being healthy, and in shape, for the first time ever... in my adult life. 

Yes... it's true. All those things about me are TRUE. And yes... they are often my lonely, dark roads. 

They are there to remind me that I need to love myself. That I, and only I... am enough. That even those roads have beautiful moments, smells, and memories... all waiting to be found and had. 

We may, sometimes, have support to deal with some of our fears... but some roads will require that we walk alone, and in self love.

"And, oh boy, Diabetes, I don't want to self love," I tell myself... I spent a good, long childhood, being ignored by my parents; and a good young adulthood being a hermit crab... Ah, why must I pay attention now? 

*Whine* 

Why must we dare to live, and have courage, and dream... And be vulnerable??  (Say no to the pushy woman, at work, with the box full of cookies...) 

Probably... because we are the biggest gift we could ever gift ourselves; WE... are the magic in our lives. And nothing else - NOTHING - will ever come close to that. 

I'll try my hardest not to let it slip by. 



Tuesday, March 20, 2012

Choosing hope...again.

I'm standing still with my arms stretched out on either side of me.


I am holding two ropes. One in either hand. Each rope being pulled so my arms are taut.

On one side I have the pull of an army of friends and family. I have my faith and my hope.

On the other side I have despair. Fear. Pulled by a couple tiny thoughts. They are embarrassingly strong.

And as such. I stand here still.

Looking side to side it is a no brainer. Hope will win. I see the good on the hope side. The smiling faces full of love and prayer. Thousands of faces.

And on the other are pathetic thoughts that I let seep into my unconscious. Why do I allow it? Hope cannot win if I let the fear contend. I'm angry at myself for letting the fear become so strong.

It all seems so hopeless, being stuck in the middle.

One has to win.

And as I sit here now pondering the opposite forces that have taken over my life, it has occurred to me in this moment that I have all the power.

I can let go of either rope.

I can choose hope, or I can choose fear.

I choose hope.

I've chosen hope before, but it is amazingly clear to me now that I need to wake up every morning and make a NEW conscious decision to hope. Or to not.

THIS morning I choose to keep the faith that everything will be ok.

THIS morning I will choose to believe that there are bigger forces at work. Forces bigger than cancer.

THIS morning I choose to let go of the rope of fear and let the forces of hope propel me into their arms.

Hope is a choice. Faith is active. I can't sit here in limbo waiting time to pass. Waiting for answers.

I need get up and actively hope. Actively let go of fear.

TODAY I will. For me. For Ryan. For the boys. I am opening up my hand and letting go of that rope.

And tomorrow I will wake up and make that decision again. And the next day again.

And again and again and again. Until hope is all that is left...and there will no longer be need for the choice.

I can do it.  I will do it.

It seems, there is no other choice.


Monday, March 12, 2012

An ocean of emotion.

When your emotions are an ocean and you are damming the flow with Kleenex, one has to tread lightly at all times. But when monthly hormones get thrown into the mix? Forget about it. The ocean's tempest cannot be contained.


I'm a wreck.

All the feelings that I have been able to keep in check have risen to the surface.

Where is the peace?

All I can do today is pray.  Oh how I wish I could look into His eyes and hear him tell me, "All is well."

Despite my substantial support group, today...I felt alone. I confided in the Lord that I felt guilty that I wished our relationship was more tangible. I recognize that faith is hope for things not seen...but today...my brain is taken over by human hormonal wiles. I am hurting.

But as I've learned so many times before, the man upstairs always finds a way to send me his love. He finds the best ways to answer my prayers, and in fact...he often uses each one of you as his vehicle.

Ryan's friend stole Ryan away for lunch and a movie today. And today, as I prayed for my peace to return...and maybe a little chocolate to pop up SOMEWHERE...my prayers were answered in one of the most unlikely of places.

The mailbox.

A generous check from a stranger. He read our story from another blogger.

A sweet card with the kindest note I have ever read.

A package full of Love from a friend.


Another envelope full of bracelets for the family:


and packaged lovingly at the bottom of the envelope...

This:


I felt like He took my hand today, and wiped my tears away through you...my friends.

I'm almost embarrassed to say this is just the tip of the iceberg. We have been the recipients of SO much kindness. How can we despair? Goodness seems to cancel out all the bad.  Love is prevailing.

A friend gave Ryan the book, "It's Not About the Bike." By, Lance Armstrong. Ryan read me this quote last night from its pages...

"When I was sick, I saw more beauty and triumph and truth in a single day than I ever did in a bike race."

Ryan and I would like to echo his sentiments.

Your good thoughts, prayers and love are our answered prayers.

We are blessed for sure.


Thursday, March 8, 2012

Not trying is not allowed.

I haven't been getting a lot of sleep, and understandably I've been under a little bit of stress. I want to keep everything as close to normal around here for as long as possible, but we all know, things aren't normal...so I've allowed myself a couple small shortcuts. 


I was so exhausted at night I came up with the brilliant idea of letting the kids go to bed a little higher than I usually do...just to curb the 2am lows. I thought, "Who would fault me? Just a smidge higher. No biggie."

But diabetes doesn't allow shortcuts. Diabetes does not allow you NOT to try your best. Low 200's mean me doing a ton more laundry, and boys waking up not feeling so great in the morning.

So then I think..."A couple more hot lunches aren't going to hurt. Who would fault me for not making homemade lunches every day of the week?"

Here is the issue with that one...they actually have to LIKE the hot lunch. And when you pre-bolus, and one of them doesn't eat said lunch? Well that leads to a 31 at 1:00 in the afternoon.

As I ran through the halls of my boy's school the other day gripping two juice boxes in my hands, I pondered the ridiculousness of the situation. Such a little thing, allowing hot lunch...and here I was worried my son will pass out or have a seizure because of it.

No shortcuts allowed. Ever. No NOT trying. Ever.

When it comes to diabetes, shortcuts mean more work and sometimes even danger. It's a hard lesson to learn that we have to always TRY, or there are consequences.

Another thing not allowed within the parameters of Our Diabetic Life: Muting the phone when you are in the doctor's office.

Inevitably someone will be low and you will have 4 missed phone calls, and to sweeten the pot you'll get two missed texts from your son who needs you to bring his Jazz band uniform to school STAT.

Another thing not allowed? Putting off needed set changes until the morning.

This morning two of the boys pumps alarmed at the same time on the way to school. It is iffy whether all three boys will make through the school day without running out of insulin. With my expert guesstimations, two will run out about an hour before school gets out.

Do I go to the schools at lunch and refill, or play the hand and see what happens? There is usually a little bit of insulin still delivered after the pump shows zero units, right?

Yeah, I have a problem.

Somebody stop me.

Sad thing is, I've already learned all these lessons before. Apparently, I'm a glutton for punishment and think It would be fun to relearn them all over again.

You can't gamble with diabetes. You have to always try. Otherwise everything can crumble quickly.  I can't do it all, but I can try my best not to take too many shortcuts/risks.

Yoda has a famous saying:



Respectfully, Yoda...you can suck it.  (Not very ladylike, sorry for that.)

In Our Diabetic Life...it is all about the try.

NOT trying is not allowed.

Try, or try not. That is all we can do.

Sunday, March 4, 2012

Choosing Hope

We are very aware that we should be angry, confused and screaming at the fates.
We know we should be withering in a corner shaking with fear and confusion.

But that isn't how it is around the Schuhmacher house these days. There is something bigger at work in our hearts. That something is faith.

We are cognizant of the fact that faith can seem like a fantastic thing. The Lord knowing of our family personally and in turn blessing us with those things we stand in need of can seem practically impossible.

But although it may seem so, at this moment in time we are sure as the day is long that we are being carried by His love.

Ryan and I sat in bed last night and tried to explain to each other the way we were feeling. It is so difficult to describe. Both of us feel like our hearts have stopped beating, but not in a scary...we are going to faint any minute kinda way...it is more of a peaceful calm that has canceled out the buzz of our diagnosis shock. It is pretty unexplainable. How can we feel such peace in such a scary time? It is very surreal.

It is obvious to us that there is a divine hand in all of this.

If you would have asked me a couple weeks ago, I would have told you that the world was full of mostly selfish people who are really bad drivers. Sure, there were pockets of good people all around, but in my limited focus, that wasn't the norm. I lived in a bubble, completely absorbed in Our Diabetic Life. I couldn't look past the annoyances of the world and see people's hearts for what they were.

Well...the bubble has burst. And I see with perfect clarity the overlying goodness of the people in the world. I'm angry at myself for having to go through a crisis such as this to see. People mask their goodness by their hurt sometimes, and it is painfully obvious to me now, that almost everyone is hurting from something. Good lives. And in our case, it has prevailed.

It is almost unfathomable the outpouring of support and love we have received throughout the diabetic community and beyond. Our church family, our blood family, our earth family...they have all reached out to us, and we feel more than anything, abundantly blessed.

We are crying ALL the time. But it isn't due to despair...it is because we are constantly touched by the thoughts and prayers of all of you. Every note, every song, every picture, every blog, every status, every tweet, every call, every meal, every hug, every well wish is burned into our hearts. We are trying hard to accept all the love. It seems silly how easy it is to give love, and so hard it is receive it.

Ryan and I have changed. In one week we are different people. Seems impossible, but I promise it is true. We see the world and every person within in a different light. We feel our Father in Heaven wrapping his arms around us, and we truly believe that our miracle is in the works.

Your prayers and good works are making a difference. We feel them...they are as tangible as the keyboard my fingers type on this moment.

Ryan was never a facebook, twitter or blogging kinda guy. Now, when he wakes up at night and can't sleep he turns on my computer and reads the love. He wants to send a personal message to all of you. That will come soon.

Until then I want to leave you with this quote I found:

"The scriptures say that there must be an opposition in all things. The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father. There may be times when we must make a courageous decision to hope even when everything around us contradicts this hope. As one writer expressed, “in the depth of winter, we find within us an invincible summer.”"

Our family has officially made the decision to Hope. It didn't come at one moment, but rather through small doses of encouragement and prayer throughout this week. Your prayers have brought us the peace we needed to get to this place. Saying thank you is totally insufficient. You have saved us from despair.

How will we ever repay you for that?

God bless each one of you for your goodness.


Saturday, March 3, 2012

The 'Betes Preachers...

Art by: Ankhammentu
Pinups Girls and Vectors 
There are two things that often make me feel uncomfortable; no, three: discussing religion, the current state of politics... and discussing my diabetes regimen with another diabetic.

"Wow, you have to get out of this business if that makes you uncomfortable, Liz!"

You'd think.  :-) I still do all three.

Some of you might get where I'm going with this, before I even get there. You meet some diabetic folks, you share the management lessons (individual lessons) life with diabetes has taught you, and then you're told you're wrong; very wrong. You might even get accosted for it.

It's not surprising, really. More personal than spirituality, than who we vote for... I can't think of anything more personal than what we eat.

What we eat and when, is a language, and it speaks for us and who and what we are, as people; for what we believe, subconsciously. Besides hunger, it might say things like...
  • We're sick;
  • We're bored;
  • We're emotional;
  • We're religious;
  • We respect nature;
  • We're against corporate greed;
  • We believe in self-sustenance;
  • We believe we don't care;
  • We use food as filler;
  • We use food as comfort;
  • We use food as excitement; 
  • We use food as DOGMA; 
  • etc, etc, etc. 
I've truncated it considerably here, but the list for what our eating says can be quite lengthy...  and often perplexing.

For these very same reasons, there really isn't any other "belief" system in which so many folks try to "preach" to us, sell to us, get us to follow their way, their methods, their paths; get us to join their particular "culinary denomination," more strongly.  

... And, often, BEFORE illness even enters the mix! 

It doesn't help that for every need or illness, there's an opportunist out there hawking a book, a cure, a reversal, a miracle, and of course... a conspiracy theory, and a diet. A diet you must strictly follow to the letter. They all claim to be the experts on "weight loss," or the "it" revolutionary diets. They ALL claim they can work for any illness, regardless of your circumstances, and let me tell you, not a single one of these people... has ever said anything less than that they were 'renowned' experts. They all claim to be renowned doctors, dietitians, food scientists, etc. (Experts in everything, and nothing.) 

Folks with diabetes are just like everyone else, and can be vulnerable to the pulls of these jokers, and of fad dieting choices, from every which way. We are, after all, eager little sponges, wanting to soak up all that 'learning' out there in the big ol' 'interwebs'... and we want be on the cutting edge of managing our disease. We also want to be IN CONTROL, at all costs, and often under fed delusions that needing ANY medication at all is a bad thing.

Now, don't get me wrong... We must strive to be the healthiest we can and I am not against any particular way of eating, so long as it's something we can maintain long term, and it works for US and our daily diabetes management, as well as our personal beliefs. 

It's just that there's a lot of intransigence being taught out there, as well; a lot of 'evangelizing' and a lot of intransigence. People use these food platforms to tell others that there are NO other ways to health, but through their own plans; that they will lose control and binge uncontrollably, or never attain tight control, and go to diabetic complication hell if they don't follow as they do, or that they are lacking in scruples if they decide differently. And it gets so annoying! 

To me... THIS is what getting "diabetes religion" means: that you are so self focused on what works for YOU, that you forget that your own mileage varies, as well as everyone else's, and that we all have the RIGHT to find our own path in our management, without someone else making us feel that we are the devil in a blue dress for daring to do so. 

I'm a moderate low carber, myself. I'll still eat some ice cream, some tiny amounts of pasta mixed in with a lot of veggies, or tiny amounts of rice; I'll even occasionally, go jogging for the pleasure of having a cupcake... or I'll eat a cheeseburger on a lower carb bun. I EAT BACON. I, personally, do not view foods as "good" or "bad." And honestly, I *believe* it's wrong to do so. I believe life is about moderation. I hate to admit that, because I can get attacked at any point by no carbers, low carbers, no-restrictions on carbs people, vegans, raw foodists, and I have! 

But quite frankly, since what I put in my mouth is between me, my God or lack of a God, my glucose meter, and my doctor, it's no one's damn business! (It's insane for anyone to think that it is!) 

Keeping it between you, and your glucose meter and your doctor, is what we truly ought to be evangelizing. Finding that balance that is right FOR YOU, so that you can keep a good pace during the long-life marathon that is diabetes. 

(... And yes, I do not take any medications. I've lost nearly 80 lbs, and yes... my A1C is 5.5%, and yes... I have a beautiful cholesterol panel. Thank you, very much. I've worked HARD for that... even if I got to have a burger or some ice cream, along the way, while achieving it.) 

Your diabetes mileage can and WILL vary. Help where you are asked for help, support those who need it, and NEVER lecture another for being different than you, or having different needs than you. After all, you wouldn't want them deciding what you should eat. Remember the code of Diabetes Etiquette for Diabetics.




  




Thursday, March 1, 2012

You Never Want to Feel That Kind of Panic When You Have No Insurance

This isn't exactly what I wanted to write about, tonight. I'm not exactly an "on-schedule" blogger, but I know this is definitely not what I was expecting to write about, tonight.

[Before I proceed, though... I just want to say that I don't want ANY pity. No pity... No feeling sorry for me... No hurting for my circumstances. No advice on what I could have done better (I will rip you a new one, if you do, just be forewarned). Life is what it is, and we are all dealt... what we are dealt, sometimes. Whatever that is. There are people, right now, going through a LOT more difficult circumstances. They deserve our support... so don't you worry about me. Also, this post might have a lot of swearing.]

I just need to process, and I need to vent. So to heck with it.

... Where do I start, I don't know. It's such a blur,  now.

Last Sunday.

Last Sunday, running my hands through my hair, while wanting to put it up in a clasp, I found a large, swollen lump or area on the upper right side above the nape of my neck. It wasn't entirely dissimilar to the one on my left side, but distinctly swollen feeling, and sore if one put gentle pressure on it... and irradiating discomfort.

Of course, being The Angry Type 2 Diabetic that I am, I freaked out... said a few choice phrases rhyming with "What the fructose??" and sort of felt the clammy feel of panic rising up my spine. (You never want to feel that kind of panic when you have no insurance.)

I decided, though... that I was going to remain calm. (HA!) Just monitor it for the week, and wait until Thursday (today), for the Free Clinic, to get it checked out. As things sometimes go, I started feeling... unwell.  "Woozy," feverish... just uncomfortable from the growing pressure in that area of my head... The "soreness" was starting to radiate down to my right shoulder, down my neck... And today, well, it was just difficult to focus, at work, and I noticed I couldn't really walk a good distance without feeling... just weird. Light-headed. Nauseated. "It's okay, though," I thought... "Today is the Free Clinic, and they'll have a look at it."

Now, the Free Clinic in my town is basically a rat pack of some medical professionals of various ilks who volunteer to provide some basic/minimal health care to uninsured people, no questions asked, and which only generally meets on Thursday evenings, from 6-8 pm. You have to arrive at 4 pm, though, and make quite the long line. Waiting for care often averages between 4-6 hours... and it's first come first served, of course. They can only see about 15 people.

The problem is... they used to have a somewhat permanent building, which has since been torn down by their tenant -- the next door church, while they make some new additions and changes to their facilities. So, the Free Clinic now has to share space with the next door church, and can only meet whenever the heck the church is not having some event. Which basically means... whenever a magic 8-ball decides.

I walk out there... just praying, praying under my breath that they are meeting. Lo and behold, as Murphy's Law loves me so much... They are not meeting. I think it's because of some stupid Pancake Day crap. I don't know. (Insert your personal sensibilities approved curses here.)

Then you have to make the tough decisions. Is this something that you think will go away; get better on its own? Am I overreacting? Is this... something that... could potentially get worse very quickly, and kill someone? Is this something that can be stopped, but it just needs immediate attention? I don't know... Do I go to the ER (because the local medical clinic is closed... and, even if it was open, they won't see me because I have no insurance and a hefty past medical bill that I can't prioritize to pay right now (don't judge me... you don't know me... and they won't let me pay anything less than an outrageous amount, every month...), while so underemployed and on food stamps...)? Or do I chance it?

Reluctantly, I decide... I'm going to go to the ER. I don't want to be the freak on tomorrow's front cover story that died within days, from something simple, or who knows what. The worst they can do is turn me away. And I was wrong. The worst they can do is shame me, while turning me away.

The doctor didn't even really look, or touch the area much. He basically pushed my hair around, said it looked exactly like the left side of my head, that he didn't see any physical injuries, and then asked have I ever cared to examine the left side of my head...

(Yes, doctor, the rest of us who aren't doctors are certainly idiots... We go entire lifetimes NOT touching our own bodies.)

....and then proceeded to tell me it was probably just me being worried about it, or at the very most a resented lymph node. He dismissed my other symptoms with the wave of a hand, gave me a smirk and a suppressed laugh, and said that I need to just let it stay like that, and come back in a week if it got much worse (with big disbelief all over his face).

I tried, very unsuccessfully to get his attention. He just basically acted like I was bullshitting him, and walked off.

Nurse Patronizer walks in. Nurse Patronizer notices I'm quite angry. I don't recall whatever tipped it off... (pffft!) But... Nurse Patronizer says to me "I don't know what you two discussed," and boy do I let the flood gates go... and I start crying, right there. She begs me to give her 5 minutes and goes off, basically to talk to Full of Himself Doctor, who says "Oh, she needs to just watch the area for 2 or 3 days (yeah, rather than a week, like he had said before... hmmm)..."

Nurse Patronizer repeated over and over again how it wasn't that I had no insurance, while at the same time pushing a flyer on me to go to the Free Clinic tonight.... After I had spent a good chunk of time explaining to them that the Free Clinic was closed. They wouldn't believe me, and kept asking me *why* it was closed. Now how in the &#$@ should *I* know?! All they had was a sign posted about "We will have No Free Clinic Tonight, 03/01/2012." I'm not their schedule keepers!

So, really... hmmm... If you are not punishing me for not having insurance, then perhaps you were punishing me for your perceived notion that I'm using the ER as a PCP provider's office, and not waiting until whenever the heck THEY would have given me an appointment (should I had been able to get one, which I know from experience, that I would have not, because of my outstanding bill. I know how those jerks work, too.)

So, off they sent me... With apparently, a few "lessons" for the road:
  • You've lived with your body for 35 years... and are quite educated, Liz, but you don't know your own head;
  • You have no insurance, and are underemployed, so you must be subhuman, or some mentally unstable person making stuff up... abusing our services;
  • You are nothing more than money;
  • I hope you don't die, but good luck. Suck it up, butter cup.
And THAT is the reality uninsured people have to put with... in America. 

I am, at home, and still feel... Odd... Feverish. Sick.

Off and on, it goes. I feel even more special I will get a nice, hefty bill in the mail, for absolutely nothing. For the theater of a man's arrogance, and a woman's patronizing. I've had more pleasant experiences there, before, but not today. 

Not today. 

 
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