Our Diabetic Life 2013: A year in review

My first entire year without Ryan in over 20 years. 

Is it no wonder it began with posts full of memories of him?  It’s been surreal to go back and see this year unfold once again.  Hindsight is a wicked teacher.  It’s been a process, but I’ve learned so much along the way.  I’m stronger now.  I’m so thankful for that.

In January I began my journey into therapy with “The Accidental Patient.”  I have since graduated myself from the group.  The time I spent there was eye-opening as gaging my progress amongst others was interesting, to say the least.  I walked away thankful I wasn’t bitter.  I could have so easily been bitter.  

I’m sure part of the peace came through my process of picking up the pieces.  I explored doing so in “Fixing my Faith.” Ryan’s passing made me come face to face with what I believed.  It was no longer ok to believe in heaven anymore.  I needed to know.  I have no reservations when I say now, I know. 

As I was muddling through the phases of grief, diabetes was still there.  It was the normal diabetes routines that got me through day by day.  Forgetting myself was/is a blessing.  There were the highs in “Anatomy of a high,” and lows in “Dear 42.” 

I started of February doing that “Hope thing again.”  In that post I coined the phrase “Hopers gonna hope.”  I was even braisen enough to say that was going on a tshirt.  Of course, one of my talented graphic designing friends surprised me with a graphic which obviously led to T shirts for everyone!  I sold over a hundred at cost to my facebook friends.  Us hopers have to stick together…

I also posted my PSA about Cancer...specifically Melanoma.  If you haven’t read, “This one’s important.” I implore you to take a minute to read it now.  It could save your life, or a loved one’s life.  Read it.  Please.

In March there were rumors upon rumors upon facebook post upon facebook post about advancements and cures and exciting things coming.  I had to put in my two cents in the “Cure-O-matic.” 

At the end of the month I wrote my most viewed blog post in the history my blogging: “Our Diabetic Life in Drawings.”  I think it speaks for itself.

April 1st began with a bang with “The Bloody Truth,” where I explored the many different ways to dispose of that extra bit of blood left on the finger after testing.  Since then we have discovered Diabetic Dabs, when handy, they prove to be very helpful!

Also explored was “Meter Madness,” and the infuriating moments when we realize we have a thousand meters and only two are useable, and even then…only barely.

In May, in honor of Mothers Day, I wrote, “We are the DMothers.”  It is an anthem for us.  We are so often judged on how we take care of our children, I felt we needed a voice.  We don’t need to apologize for how we live.  We are doing the best we can for our children, and we can’t do better than that.

I ended the month recounting my turning point.  After my third son was diagnosed I slipped into a deep depression for about six months.  Ryan’s words helped me break free of that self pity, and put Our Diabetic Life into perspective. 

In June my blog was hijacked and I received “An Open Letter”from a bent cannula.  I later responded with my own letter, except this one was titled “To the Newbies,” and dedicated to all the parents of newly diagnosed children. 

July.  July was everything Friends For Life.  It is the Children with Diabetes convention in Florida that our family had the honor to attend by scholarship.  I was asked to say a few words in the opening ceremonies about a great friend of our family, Dr. Richard Rubin.  I also blogged about our flying experience as we are able to use the “TSA Cares” program.  Click the link to find out more.  And in true Meri style, I ended the month with a big one, refuting the “Tiger Mom Perception,” when it comes to D Parents.

I started out August “Remembering Ryan.”  Which is a silly statement, because I start every day that way.  But I wanted to write down the things I remember most about him.  From his eyes to the way he walked.  Also in August I took another stab at drawing, this time reflecting on “My trip to the pharmacy.” 

September marked one year after Ryan’s passing.  I posted his “Eulogy,” and then I assured everyone that “It’s ok that I’m not ok.”  Grief is a process, and I was confident I was on the path I needed to be on.  In fact I'm still confident I'm going in the right direction.

In October I wrote, “Free to be you and me.”  It talks about judging other people, especially online.  And how easy it is to think we have them all figured out, when in fact…how can we really know unless we spend a day in their shoes?  What is the harm in being gentle when we want to help someone?

Wow. In November I only wrote two posts.  Facebook was blowing up with things I had to say, but I was so busy getting M ready for his new adventure, my blog took a backseat to life.  One post I was able to squeeze out was “A good problem to have.”  It is a trick I use to see things in a more favorable light.  Even diabetes is a good problem to have…I explain it here.

In December I broke out of my funk and wrote three posts.  Ok.  Maybe I didn’t break out.  But it doesn’t’ make this post any less useful.  “Smile” is a reminder that we can still find joy in life even when things are hard.  I have.  And I’m thankful for the little reminders I get every day that everything is going to be ok. 

I made it through 2013 without Ryan by my side.  If I can do that.  I can do anything.

Have a blessed year friends!  Thanks for taking the ride with me and more than anything, for being my friend.  I feel the winds of change blowing into 2014.  Let's do this thang!

Read more »

Germination

A curious thing has happened in the Schuhmacher household.  All of a sudden, there are a lot of people with diabetes in the house.

Now, I know that doesn’t come as a shock, because yes, we've for a long time had three people with diabetes here, and no, there has not been a new diagnosis, but now that M is gone…

Let me take a breath…

Ok…now that M is gone, 100% of the children living here have diabetes.

M had always been my great equalizer.  He diluted the waters, if you will.  He was my proof that I could make children without Type 1 Diabetes.  Now that he’s away, the percentages seem a little more ominous.

The word that comes to mind is "germination."  Diabetes seems to have sprouted, or rather spread out a bit?  It's taking up more room in the house, which in turn crowds up my swelly brain.

It didn’t help the situation that the boys moved their beds around while I was dropping off M at the training center.  Each boy has their own room now, so now when I do nighttime checks I travel to all the bedrooms to complete my round of blood sugar roulette.

Don’t ask me why two rooms didn’t seem like such a big deal, and now three rooms do.

Don’t ask me.

My brain swells when I try to do the math, because really, the math is THE SAME, but yet…not the same at all.

Adding mountains to my molehills is the fact that M isn’t around to lend a hand anymore.  Those nighttime checks, the emergency insulin run to the school…that’s all on me now.  I had to leave work last week for just such an emergency run.  That day, diabetes was taller than usual.  More imposing. 

In fact it seems that diabetes has been craning its head into he picture as much as possible, as if trying to take over as the forth child in the family.   “What about me?  Take a picture of me!  I want attention too!”

Its lame attempts aren’t fooling anyone around here though.  It doesn’t get to be part of the Christmas card this year and it won’t be opening any presents either.

I’m sure it’s all a matter of adjustment and perspective.  Diabetes won’t live in the house forever.  Although as long as it is attached to my three hooligans, it will always be welcome here... 

So while diabetes is doing cartwheels whilst my boys sleep in the next room...and the next room...and the next room...I’ll find ways to make the most of life…and realize that those three rooms aren’t filled with diabetes, but instead three boys who look like freaking angels when they sleep.

Seriously.  How do they do that?

Read more »

Smile.

Well, I did it.  I let go of him.  I let him walk off, and blew him one last kiss as he rounded the corner out of sight.

Yes, it was terrible, and yes my heart was screaming, “Stop!  Don’t go!”  Even though somehow, my face managed to say, “Go show the world how amazing you are!  Remember you are loved, and I’m here if you ever need anything.  I love you!  I love you!” 

He didn’t say anything back though.  What he did was better, and in turn invited an indescribable peace to wash over me. 

First he hugged me tight.  And then… 

He smiled.

Not just any smile.  He smiled wide and proud, and ready, and excited…and joy.  There was joy there.

And there was Ryan in his face.  Ryan always jumped into things, even scary things, with pure excitement.  I never saw how much he was like Ryan until that moment. 

And then a gentleman who was appointed as his host threw his arm around his shoulder and said, “I like him already.  He is going to do great things!  He’ll love it here!”

After that, Ryan’s reflection, bravely grinning, turned and walked away. 

And just like that…(blink) my son was a man. 

As I swam through the emotions of the week, my mind kept returning to that smile.  It communicated more than anything he could have said.  The night before, he tried to tell me how he was feeling inside, but he said it was impossible to put into words.  That smile was the best vocabulary he could have used.

I was thankful after the fact to have distraction.  I got to hang around my parents, my sisters, and their children.  (Note to self:  Babies are exhausting, good job for taking care of that part while you were young.) And then after, I ventured into the big city to visit a bunch of strangers I met on the internet.

One would think that getting together with a dozen or so people you met online would be daunting, but in a bizarre twist of fate…every single one was completely wonderfully practically perfect in every way.

D parents.  I don’t care who you are.  I love you.

How is it I can sit down with people I’ve never met in person before and feel like we’ve been best friends forever?

How is it these people can know me better than anyone else?

How is it they know exactly what to say?

How is it I already miss them terribly?

I am blessed to travel this globe and come in contact with just, good people.  Walking arm and arm with D Moms in Salt Lake’s Temple Square was magical.  I’m sorry.  There just isn’t another word appropriate enough to exactly indicate what I was feeling.

Magic!  There I said it again. 

The men and woman I met in Salt Lake have had hard lives.  Some of their stories you wouldn’t believe if I told you.  But their smiles were brighter than a fresh bottle of insulin.

Big.  Bright.  Smiles.

And those smiles, like M’s, have affected me.

We can have hard lives and still find the joy around us.

One of the friends I met with was Dov.  He is a father of a child with Type 1 Diabetes.  Also, he has cancer.  He’s been beating the odds for 6 years now…every day is a big fat fight.  Do you know what made him decide to keep fighting?  Do you know what turned him around from depression and anger? 

Smiling, skipping and roaring like a lion in the library with his son.  That was his turning point.  That was it.  And because of small wonderful moments just like that one, he smiles, and fights, and spreads laughter wherever he goes. 

He’s making the very best of every moment of his life, and so is his wife, and the many D Moms I had the privilege to hug and walk with that night.

All these experiences I’m having.  All these people I meet that smile in the face of adversity, it makes it all clear to me that happiness is our job. 

Diabetes can’t take it away unless we let it.  Cancer can’t take it away unless we let it.   Saying goodbye to my son for two years can’t take it away unless I let it.

Finding the courage to smile during hard times?  Letting our faith supersede our fears?  THAT’S what life is all about.

It’s THE secret.  Through M's example, and through your stories, I’ve cracked it:  Contorting a few face muscles in the name of happiness.  That's it.

Find your smile.  Find your small moments.  Find a minute to count the bazillions of blessings in your life.  Here, I'll start for you: Insulin... Home... The sun... Recess Peanut Butter Cups...

Try smiling, laughing, connecting, and embracing the little things.

And maybe, like my friend Dov, try skipping.

See if you can do it without smiling.

And if you can? 

Try again.

Read more »

Don't Restrict Test Strips for People with Type 2 Diabetes

My fasting glucose at diagnosis,
versus currently.

All around us there are people who are struggling or living with challenging health conditions or diseases. Some are very visual, and apparent, and some are not. For those with apparent health conditions or diseases, we feel an immediate sense of empathy. However, it is not so easy for us to empathize with those whose needs we cannot openly see. We may assume a person is exaggerating (they really don't have it that bad), is being 'wimpy' (they should just shut up and 'deal with it'), or is simply lying.

Type 2 diabetes is one of these misunderstood diseases; it is a hidden illness and people with hidden illnesses often end up being judged as if they had no needs, or should be restricted in needs. These attitudes often end up in discrimination, particularly from employers, health insurance companies, and some health care providers and agencies. The problem becomes compounded because type 2 diabetes is also a silent disease. It is a disease which can remain silent (not showing very many outward signs of its presence) for many years, even decades. Hence, many people will often ignore their condition because they feel fine and healthy, and the condition does not seem real to them. Because there is NOTHING telling them they are sick, they feel a certain sense of invincibility... until they get their blood glucose level tested with a finger prick.  Persons with type 2 diabetes must check their blood glucose levels regularly if they are to be kept constantly aware that they a.) have a serious medical condition, and b.) that they need to adjust their food intake according to what their glucose levels are. A person with type 2 diabetes needs to be able to eat 'to their meter' in order to be able to manage their disease.

If the medical establishment (who are constantly preaching on the diabetes 'pandemic,' and how serious this matter is, and how the condition is costing our governments, worldwide, billions of dollars) had any inkling of the issue at hand, or indeed, if they believed their own warnings, they would realize that in order to reduce the risk of type 2 diabetes, and to control the health of those with current type 2 diabetes diagnoses, we need...

• Educated clinicians: Clinicians who are not trivializing the condition to their patients, but which strive to understand the condition, its potential risks and dangers, and who are committed to empowering their patients and properly educating them as to what the condition is; and
• Access to Proper Tools and Medicines: Sufficient glucose testing strips to make appropriate nutritional decisions, from day to day, to help control glucose levels, as well as access to necessary medications -- including insulin. 

How do we expect to control already diagnosed type 2 diabetes, in patients, if we will not allow patients to have an adequate amount of testing strips? Yes -- a testing strip should not just be a tool that is used to avert immediate danger (an extreme high, or an extreme low level of glucose.) A test strip is also a rudder to help a patient know to make the best, and most appropriate meal decisions, because we never know just how much glucose we have in our bodies at any given time. You can't just tell us to go eat whole wheat, grains, and fruit, and call it a day. I am sorry, medical establishment... Diabetes doesn't work that way. I have the RIGHT to know what my blood glucose is doing, and to be able to make educated decisions on what to eat, as to to reduce the risk of the potential long term complications of high blood glucose. It is my right, as a patient! You preach about the costs of diabetes, but something tells me you really do not understand how the game works. You see -- no one complains about the high cost of performing 3,000 mile oil changes on their vehicles; instead, they understand that if these are not performed, instead of paying $19.95 for an oil change, they'll end up paying over $1,000 for a new engine. But clinicians and insurance companies are practically telling people with diabetes that they'd rather they pay $1,000 for a new engine, than $19.95 for an oil change. I mean, isn't it cheaper, long term, to pay for some strips than to, oh, I don't know... have to pay for someone's dialysis, new organs, eye procedures, or amputations? 

Where is the common sense in the medical establishment, right now? I want to KNOW. I am SICKENED that people with type 2 diabetes who are on Medicaid  in Oregon, right now, are close to being severely restricted on their glucose test strip usage. According to diaTribe, 

Currently, the OHP provides 100 test strips every 90 days, but a new plan would severely restrict access to strips for type 2 patients unless they are newly diagnosed, take insulin, or meet a few other special requirements. For people not taking insulin – which covers the vast majority, about 70% of all type 2 patients – those with an A1c above 8.0% would be entitled to one test strip per week, while those with an A1c below 8.0% would not be provided with any test strips at all.

This is obscene!! One test strip a week tells NOTHING to a patient with type 2 diabetes! Tests need to be done in pairs so that we can see the cause and effect of things like meals, exercise, illness or periods, or even overnight sleep. Patients with type 2 diabetes are practically being PUNISHED for having good control, and being told that their health is not important enough to merit an educated management of their disease. Besides that, patients are supposed to work hard to keep an A1C which is at or below 6.5%. Telling a person that they will only get strips if they have higher A1C levels is not only not a good recommendation, but it is also unconscionable. It is the testing that keeps me at a lower A1C! I'm not psychic, for crying out loud. As of yet, there is no magical Glucose Level 8-Ball.

We need to stand together as a type 2 community against these kinds of things, or we will continue to be bullied by the medical establishment. If we are to stem the tide of unfortunate complications, and type 2 diabetes diagnoses, then we need to stand up for our rights as patients. We DESERVE education, quality treatment, tools, and medications, to manage our condition and lead healthy lives.

Really... whatever happened to the Hippocratic Oath?

DO NO HARM. 

We have very little time... Please sign the petition, here: Don't Restrict Test Strips for People with Diabetes.  

Read more »

Letting him fly.

For the past few months M, my oldest, has been checking his brothers sugars at 12:30am.  The idea came one night when I was so exhausted I knew I would sleep through my alarm.  M is up anyway, he’s 18 and busy playing on his computer until that time anyway…so a plan was hatched and many restful nights on my behalf were born.

If there was a problem, or something unexpected, M would wake me.  There were a couple times I was so out of it, he couldn’t get the information he needed and he would wing it.  Thankfully though, most of the time I was lucid enough to tell him what to do, or get up myself and solve the problem with a set change or basal adjustment. 

A couple weeks ago M got the stomach flu.  It lasted only a couple days, but one evening at around 9:00pm he asked if I could take over the checks for the night.  He was exhausted and just needed a good night sleep.

Pffft.  OF COURSE.  I would be more than happy to take over the check.  I mean, I’ve done it for years and years and years, it was the least I could do.  “Go to bed, M.  I’ve got this!”

That night was a bad one.  One riddled with unexplainable numbers and two set changes no less.  As I checked the first boy’s number and saw the number flash on the screen, I muttered to myself, “What is this crap!” 

And the emotions of years of “What is this crap!” rushed into me like looking up the bottom end of a waterfall with my jaw unhinged taking in buckets full of water by the second.

So many sleepless nights in the past.  So much worry.

How thankful was I in that moment for a few months of separation from all of it?  How thankful was I to have a son so willing to do his part?

Quite thankful.  Quite, quite thankful.

My mind flashed to the hundreds of numbers written on the white board by my bedroom.  Every night M meticulously writes every number, IOB and what he did to correct the problem. 

I was overwhelmed at this gift he's given me.  And since then, I’ve been sleeping even harder, fully understanding I need to take advantage of this respite while I can.

Because you see, next week M is leaving.

For two years.

He won’t be back for two years.  And when he does come back, he’ll be leaving a few weeks later for college.

M will be leaving next week to serve a 2 year mission near Mexico City, Mexico for our church. 

As you can imagine, I’m in denial.  I can’t let the emotions take over just yet.  If there is anything the past year has taught me, it’s to hold myself together. 

I can feel the waves lash against my back as I walk through my day.  And I’m pretty good at ignoring them.  I pretend they are smaller than they are.  I pretend like I have time.

But the time has come down to ten more days.  Where have the past 18 years gone?

Right now there is only one way to cope: I must continue to trust the Lord.  He hasn’t steered me wrong yet.

It’s the only way to keep standing.

Nighttime checks are the least of what I’ll miss about my M.  He has been such a calming force in our family; our family dynamic will absolutely change when he leaves.

Anyway.  I thought you should know.  M is leaving, and the bags under my eyes will be back in full force.

It’s part of life for every mother to let her child fly.

I just can’t imagine how I’ll find the strength to let him go in that last moment.  

I suppose that’s where that whole “trust” thing comes in.

Read more »