Thursday, May 29, 2014

The Good, The Bad, and The Endo

Our t-shirts for the JDRF walk arrived.  Sugar Bear designed them and I love them.  And they are in his fave color, blue.  He even tried it on and it fits and no issues (well, I do have to cut the tag out) but he likes them!

Today was what will be Sugar Bear's annual lab appointment and endocrinologist appointment.  Today was also supposed to be the day the rest of us had our blood drawn for the TRIALNET studies.    I took dedicated teenager out of school for today since it was going to be a long appointment and all of us were involved.  Turns out we hit a snafu.  Supposedly they had called us numerous times to have a consult for the TRIALNET stuff.  They couldn't draw our labs today.

So only Sugar Bear had labs done.  The good news, no thyroid issues and his Ha1c is now 7.8!  

The doc said we're wanting him in the 7s for now.  We got some new ratio changes, discussed some diet issues to keep the weight from climbing, and talked about exercise.  We also talked about new goals for shots and checking his own BS.  This little guy is so great.  We came home and he gave himself his own shot for lunch.  He really impresses me.  Afterwards we took a walk. And the Teenager rode his bike.  All in all, I'll call this a successful endo day.  

Monday, May 26, 2014

The Perfect Number

I spoke too soon.  Yesterday Sugar Bear had three lows and one bounce to a succeeding low at midnight.  Spent an hour in the middle of the night just getting it into range and then above 120 so I could sleep.  The day before that he had one low (not super low) and one in the 200s and also a low at midnight.

Numbers.  Numbers dance in my head.  What day is it, what time is it, what is his BS number, number of carbs, how many units, etc...etc...etc...numbers, needles, and blood.  I've never been much for any of those, now my son depends on them for his life.  And I've had to adjust.   Now numbers and math affect me (and my baby) in real life.  Now they mean something.  They mean something real.  They are important.

Last night and today have been harder adjustment days.  For example, today Sugar Bear laid down around 2:15pm and hubby thought he was just resting.  I came in and talked to him for a few minutes as I was getting ready to go grocery shopping.  It wasn't our normal testing time but something made me check.  Maybe it was the fact that he doesn't normally "fall asleep" that quickly or take middle of the day naps or that he stopped talking with me but I decided I needed to know what his BS was before I left.

  Juice box and two glucose tabs and fifteen minutes later he was back to low 80s.  And Glucose tabs-that was a first but this was a low where he was a bit out of it and we wanted to make sure we brought it up fast.  Once the sugar was in he perked right up.  Hubby went grocery shopping and I stayed home and played cards with my Sugar Bear as my heart slowly stopped racing and my adrenalin dissipated.  "What if" scenarios playing across my mind....he beat me soundly.

The perfect number for us seems to be 120.  It's not low enough to worry about dropping out of range and not high enough for those kinds of concerns.  Yeah, we like that number.  It makes us happy.  A number actually makes us feel good. Most are scary.  80-150 is really a small range in the scheme of all the available BS numbers.  I'll take a 120 over a 47 every time.  Who knew numbers could cause feelings.

Saturday, May 24, 2014

Brain Twist

Wow, that is the longest without blogging since I started.  Probably has to do with that blogging every day last week and still trying to read all the entries.  Or maybe it has to do with the nicer weather.  Or maybe because we're gearing up for our JDRF walk.  Or more likely because Sugar Bear's numbers have been more in range than not!  Probably that last one.

Our 30 day average is only a little out of range.  I'm starting to worry what his Ha1c will be at our next appointment coming up on the 29th.  I know it's silly to worry about it.  But I also know how awful his numbers have been since the last check.  Plus, it's a lab appointment.  We're all getting blood drawn.  Three of us are doing it for the TRIALNET stuff.  Two of us, the teenager and myself are needle phobic and not so good with blood.  We'll do it; it's just going to be an upside down stomach churning day for me.  Then I have no idea how long it takes to get the results back.  It'll be an exercise in patience.

We did decide to do our family drive in outing last night in celebration of my super smart teenager who got straight A's all school year!  It was uncertain as the teenager had a headache but he decided we should go.  I was the only dissenting voice.  I wanted to go but was worried.  Turns out rightfully so.  The drive in was packed for X-men.  We sat outside for the first time this year but it was definitely chilly, even with blankets.  I had tried to tell the boys to wear warmer clothes.  They didn't. They were cold.  I did bring their jackets and even with those and the blankets they froze.  The first 45 minutes of the movie were fairly uneventful but then the teenagers headache continued to get worse.  Luckily we had very few issues with Sugar Bear's BS.  (Although, it is more challenging to give a shot in the dark with only the cell phone for light.). I missed quite a bit of the movie trying to take care of the boys.  Teenager refused to leave (the movie really was fantastic) and Sugar Bear was totally engrossed in it.  We all loved one particular seen with Quicksilver the most.  At the end of the movie Sugar Bear said "Oh my God, brain twist."  We made it through and even stayed to watch the final clip after the credits.  When we got home with the teenager having a full on migraine, I despised being right.  Sometimes I want my gut to be wrong.  I like "brain twists" in a movie not in my son.  I love that my boys are so strong.  I just wish sometimes I wasn't so right.

Sunday, May 18, 2014

Blue Skies

My Favorite Things - Sunday 5/18
As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

I don't have a favorite blog or post from the week.  I've enjoyed so many of them.  They've made me laugh and cry.  I've loved the comments I've received and wish I'd had more time to do in kind.  I haven't read everything yet (looking forward to enjoying all in the next week or so).  The Saturday pics were incredible.  The poetry was impressive.  So much good from all these bloggers.  All these bloggers affected by diabetes.  Type 1s, Type 2s, parents of children with diabetes.  Even pets.  The one thing, my one favorite thing I took from this week of experiencing the DOC in action-we are not alone.  My son is not alone.  My husband is not alone.  I am not alone.  There is a beautiful community here of special and amazing people who either happen to have diabetes or care for someone who does.  That is big!  That is comforting!  Thank you so much to Karen from Bitter-Sweet for arranging this for the fifth straight year.  

Saturday, May 17, 2014


Saturday Snapshots - Saturday 5/17 Link List. 
Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


Late November 2013

Christmas 2013

Little did I know how much I'd appreciate my gift

ER trip #1

PICU labored breathing had stopped

Such a dark moment in our lives

Moved to the hospital wing.  Let the learning begin

New Year's Eve

A visit with big brother before going home

Breakfast in bed

Concentrating the hardest I've ever seen on his 9th birthday wish

He's still here; he's still goofy; we got this

New tools

Friday, May 16, 2014

Too new

Diabetes Life Hacks - Friday 5/16
Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

I think we are still so new to this that life hacks (tips and tricks) seems pretty foreign.  We've started to feel a little more comfortable with making decisions (such as leaving out 45 carbs as opposed to the typical 15 when we get together with our friends to try and prevent what seems to be an inevitable low no matter how high he is when he starts) but we aren't on a pump, don't have a CGM, and pretty much shots are straightforward.  I do love my PerfectPortions scale and my frio pack.  The pens are easier than the syringes.  We're getting pretty good at guesstimating carbs and love restaurant aps for our phones!   And Sugar Bear is pretty easy going when it comes to shots and finger pokes.  He's a tough little bear.  Hmmm, this all makes it seem like a bed of roses but roses always have thorns.  We've made mistakes.  Even once completely missing an after dinner bolus and then panicking about what to do about it.  I still hold my breath before I pull the needle out but seem to be able to stomach the wet shots better.  We have less wet shots, which is great.  I still panic about whether he's sleeping because he's tired or because of a blood sugar issue.  I'm terrified to move him back to his own room which is upstairs by himself.  I felt like I was almost ready and then read about the 15 year old Plano, Texas teenager who passed away in her sleep due to hypoglycemia a little over a week ago.  I hate this disease so much, but get why our diabetes educator kept saying "new normal".  I think we're kind of there.  Life hacks will happen with the gadgets, but right now I think we've hacked the "new normal" in everyday life of approaching this as just part of what we do.  I'm more relaxed (I know
what I wrote at the top of this probably doesn't give that impression but I am).  I can actually enjoy a glass of wine at a friends house without too much worry.  I know I've got the resources and abilities to take care of my son.  And to educate him on taking care of himself.  By the way, he did his own BS check the other day from start to finish.  He got the alcohol prep out, wiped his finger, got the lancet ready, got the strip in the meter, clicked, got the bead of blood, held the meter to it without any coaching or prompts from us.  This from our little bear who told us he would never do his own testing when he was diagnosed.  I don't expect him to do it every time yet, he has his whole life to do that. I'm just so proud of the fact that he's got some of this figured out.  He's great at carb counting and 
totally remembers carbs on his favorite foods.  That's the life hack we're working on.  

Thursday, May 15, 2014

Like an energizer bunny we keep going

Blogweek Day 4. Mantras and More - Thursday 5/15 
Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

I didn't write much yesterday.  I could have.  I have lot's that can bring me down in relation to diabetes, but when I start thinking about it all-my husband with type 2 and his issues, my son with type 1 and all that entails, the increase in both these types of diagnosis, the children and babies with their calloused fingertips- well, I get overwhelmed.  I'm a bit of an empath.  I've always been able to "put myself in their shoes".  And sometimes that can be too much.  So I didn't delve yesterday.  I didn't want it to bring me down.  I only read a handful of the other blogs on that topic too for the same reason.  Forgive me, it's a raw spot.

This is sugar bear and hubby in 2009 after hubby's double knee replacements.

But Mantras and more, yeah, that I can do.  A big one for us with Sugar Bear is "I/you/we got this" followed up with "we have too".  I think they are pretty self explanatory.  It's the Little Engine that Could and "what doesn't kill you makes you stronger" philosophies.  Or even "just keep truckin'". Hubby was a semi truck driver for awhile before he had double knee replacements at the young age of 39.  We've been through lots and always came out the other side (knock on wood-okay maybe a little superstition thrown in for good measure with mantras).  I like to think there really is a silver lining to every cloud and a rainbow with the storms.  

Photoshopped the "not" after diagnosis
So besides mantras, which we have in abundance, what else do I have?  Humor.  Laughter.  Making light of just about any situation.  Diabetes included.  My husband is great at this.  So are both the boys.  Sugar Bear is leading the way.  Sometimes the jokes or pranks go too far, but they always give awareness and grounding.  I have a family of pranksters and jokesters.  Even the animals help out.  Our one kitty, Ricky, likes to pull antics that have us laughing so hard we're crying.  And the animals respond best to Sugar Bear.  He's like a mini Dr. Dolittle.  Here's a pic of Sugar Bear minutes after he cam home from the hospital January 1st, 2014 after diagnosis.  What you don't see is Ricky at his feet.  

And music.  Music soothes, touches, and fits just about any mood or situation for me.  I can always find a song that I think fits the situation.  Now we've added "diabetes" songs.  For example, Billy Joel's Big Shot has been running in my head recently as we've had to give larger and larger shots of insulin.  He's out of the honeymoon stage and these bigger shots are a bit unnerving for us.  So I'm always finding songs and parodies of songs that make this all a bit more bearable.  Right now Sugar Bear is singing in the other room.  For us life is a musical but it's definitely not your typical one. Our musical tastes go from classical to heavy metal to everything inbetween.  Justin Bieber is not on that list!  

And movies.  Movies are big in our household.  My husband and I met in a movie theater and got married in the same.  Our first dates were to concerts and movies. We take the boys to the drive in to do family movies out and we rent movies and pile into the family bed to watch movies in.  Movies take us to a different world.  They help us leave ours for a short bit.  They are a way for us to have a bit of a breather.  A break.  

And finally, books.  But really that is just me.  Like movies they can take me out of my head but they
also help me grapple with the issues at hand.  Books, for me, are life savers.  I need to read and reading helps.  

Life is what keeps my family going.  The enjoyment of life is why we do it.  

Tuesday, May 13, 2014

Perchance to Dream

What Brings Me Down - Wednesday 5/14 Link List.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

This one is tough.  From the sleep deprived evening and day before diagnosis and the shock and haze afterwards I have struggled through clearing my head.  It's been difficult.  I've cried more in the almost five months since then.  I've been angry and in denial.  I've bounced between the stages of grief.  I still bounce through those stages.  It was so unexpected and unbelievable.  I'm needle phobic and now we give our baby shots, multiple shots, just to keep him alive.  He seems to have adjusted better than we have.  Kids are resilient.  His humor and his dad's support have allowed me to regroup.    The unending supply of love in this family keeps me going.  My friends' and families' outreach and concern help keep me grounded.  My desire and inclination to learn everything I can to make this "new" normal not so different from our "old" normal helps me focus.  I'm still sleep deprived.  I haven't woken up and found he didn't have type 1.  But we can do it.  One step at a time.  One test at a time.  One shot at a time.  He's so worth it.  I'll keep dreaming of a cure when I get to sleep. 

Monday, May 12, 2014

Lancing Glance

Poetry Tuesday - Tuesday 5/13
This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

Poetry, the language of love.  People falling in love write poems on napkins.  Poems are recited at weddings.  Songs are lyrics.  My beautiful teenager suggested an acrostic poem with the word "glucose" for today's blog prompt.  I decided what I really wanted was a poem from my husband.  He's recited and written poetry from the first moment I met him when he wrote Rumi poems on napkins for me at Denny's what seems like ages and ages ago and is in fact around 20 years. He's talented.  (At least in my opinion.).   He has a way with words.  He's a philosopher.  He's funny.  He's sweet.  He's my best friend.  And he was the person I had to call from the ER at Children's hospital first.  He was devastated.  He has diabetes (type 2).  He understands.  He is our rock.  He loves his boy.
  And he wrote this:

Lancing Glance

He puts a hand out, reaching, hungry
it is a hand that's riddled with scars too small to see
never free, the need to bleed in order to feed
louder each time we do this.

I take the hand, and it is warm, or cold
a first hint of how he feels to me
the tangible connection the reading silently 
from his body's subtle book of clues

I run through steps I know I have taken a hundred times.
I walk through them as if for the first time, and I don't keep count.
No, I do count everything, always a measure to be made.
Love is math now too. Math that gives life. Love Math.

In the aftermath, he skips away to eat his body full of sweetness
needing more sweetness, needing to battle sweetness, but always sweetness.
His laughter belies none of this, his laughter denies none of this.
His laughter defies all of this.

All I can see sometimes is a thousand red dots 
on a thousand torn pieces of tissue.
Some of them are shaped like hearts from 
the way I pinch them from the paper towel.

And then that world of mine screaming injustice inside my head
falls utterly silent in the growing smile on a boy's face
as he sees something funny or hears some funny joke and
I know there are a countless billion more red dots inside, and because of them,
because of him and his bold amazing brilliant smile, we are unafraid.

Sunday, May 11, 2014

I want... I wish...

I'm participating in a diabetes blogweek.  For more info check out Bitter-sweet
The first prompt:
Change the World - Monday 5/12
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Had a conversation over the weekend with one of my best friends.  We were discussing her daughter who had said she wished she had diabetes 'cause then she wouldn't have to take her showers and breathing treatments for her asthma.  She is Sugar Bear's age.  My friend told her that she shouldn't wish for that, that at least with her asthma she has a chance of outgrowing it.  And her peanut allergy is not the same either.  They are careful so she doesn't have a reaction but it is a "mild" allergy.  Our conversation then went to discussing the Girl Scout troop they are in and how they have a function coming up where everyone will be bringing food.  They have two newer Moms and one of the newbies told the other, her friend, that she should bring that "peanut butter dish".   Even after the troop said there was a peanut allergy this woman said "you should bring it anyway".  My friend was aghast.  I was furious.  Food issues are not a fad!  Gluten free is not a choice for many.  Allergies and food issues can be deadly!  I wish there was a way to raise awareness.  That is my biggest drive.  It seems unless you have some disease or food issue in your immediate circle you are blissfully unaware!  And can come across as unkind and insensitive.

Before Sugar Bear was diagnosed I was very unaware and uneducated on type 1.  My husband had been diagnosed with type 2 and I kept trying to make Sugar Bear's disease the same.  It's not.  It's a completely different monster.  There are days (many) where I wish with my whole heart to go back to blissfully unaware.  Sugar Bear will never outgrow his disease.  It'll always be there.  It'll effect every decision and thought and plans.  It will sit in the back of his brain, like a shadow, a storm cloud.  He'll fight, cause he is brave and strong and stubborn.  But it will never go away without a cure.  It's now part of him, part of us.

Now my awareness is there and I try to work towards information, education, and fundraising.  I want doctors to be more aware so no one has to experience the diagnosis nightmare of a child in the ICU, or DKA coma, or death.  I want pediatricians to make testing part of the well child check and especially checking when there are symptoms of flu present.  I want advances in treatment so one day my son's tiny fingers aren't so calloused and his arms aren't so bruised.  I want a cure.  None of this
will happen just by wishing and wanting so I'm slowly getting involved.  I will be walking at King's Island in less than a month to raise money for JDRF (juvenile diabetes research foundation) and Team Sugar Bear has raised a little over $700.  My husband, my brave teenager that is needle phobic, and myself are doing TrialNet at the end of this month.  I've joined a few online communities for support, have attended a diabetes conference, and am writing this blog.  Every little bit counts.  After watching that little boy on the floor of the concession stand at the drive-in with over a dozen people around him not knowing what to do (see my blog I. Hope He's Alright) I know I have to do something so that doesn't happen again.  So it's never my son at the mercy of people so uninformed.  One person can make a difference.  I believe that we can make this monster stay in the dark corners if not eventually get rid of it altogether.  I will work towards that goal for the rest of my life for the millions of children and adults who fight the monster that lives inside them but especially for one little boy who is my hero.

Wednesday, May 7, 2014


I live in a fairy tale.  One of the classics.  You know the story of the little girl that goes into the bear's house and she goes through one that's too hot, one that's too cold, and one that's just right.  Goldilocks and the three bears.  I feel like getting in range on Sugar Bear's BS is like that fairy tale.  We wait for the tell tale beep of the meter.  Is it high; is it low?  We're in range?  Yay!  Celebrate for a few until the next check and repeat.  This time it's high.  Then low.  Maybe a couple highs in a row and then like a ray of sunshine we'll be in range.  Yesterday we had three in a row.  I don't think we've ever had a day where all his checks were in range but I do know it's been weeks since we've had the majority be right.  I'm just waiting for that day.  Until then, this one is too high, this one is too low, and this one is just right.

Saturday, May 3, 2014

I Hope He's Alright

"Mom, that was really scary.  I hope that boy is okay.  I'll keep him in my prayers.  He was in his Mario pajamas and just ready to watch Spider-Man.  Do you think we helped him?" This is part of how our evening went.

We decided to go see Spider-Man at the drive-in tonight.  We'd all been looking forward to it.  The boys went a couple weeks ago sans me since I was sick.  This was my first trip to the drive-in this year and since Sugar Bear's diagnosis.

First was a visit to a neurologist for Goofy Teenager.  I had to leave work early in order to make sure he was there on time.  Diagnosis of post concussion headaches.  Yep, that's right.  No tests planned.  Next appointment in three months unless things get worse.  Some changes in his headache medicine and suggestions on diet and diary keeping, but overall not a bad visit.  Then home. Dinner.  And then out to the drive-in after procuring some special snacks (yup, cookies and beef bites, yum).

Heading out to the car Sugar Bear banged his knee on the side of the van and tears ensued.  Usually when he gets an owie we don't have tears.  So this definitely hurt and it made me think that staying home and an early bedtime might be the better way to go but instead I kissed  and held him and offered to go grab some ice from inside the house.  All better and we head out.

We get to the drive-in at 8:30.  Movie is supposed to start at 9.  I head to the bathroom and goofy teenager goes to the concession stand for a drink.  Hubby and Sugar Bear stay in the van.  I head back and so does goofy teenager.  We hang in the van for a few and the teenager needs to use the restroom.  While he's gone some guy comes to our van and says there is some kid in the bathroom having a seizure.  I'm about to test Sugar Bear so hubby goes to make sure our teenager is okay.  I test.  He's high so as I 'm prepping Sugar Bear's arm to give insulin the Goofy Teenager comes running up saying he needs the glucagon from the kit because some boy is having a diabetic seizure.  I hand it to
him and he runs off.  Within a few short minutes hubby is at the van and says they aren't going to use the glucagon but that the boy has definitely had a seizure and no one knows if he's high or low.  I grab the gel and tabs and have hubby give Sugar bear his shot while I hurriedly head out meeting the teenager coming back.  I tell him to come with me.  We head to the concession area (not the bathroom) and there is a boy (12 years old) on the floor with a blown up plastic glove under his head, a circle of people standing around him and two guys trying to wake him up.  I assess the situation and ask if anyone has a kit.  One woman says she tried to test him but he jerked his hand away.  I ask for the kit.  I talk to the man (his dad, Jeff) and find out the boy's name is Liam, he's 12, newly diagnosed  (within) last two weeks.  I test Liam all the while talking to him but not getting any response.  71.  Not really all that low.  I ask Jeff what Liam's range should be- same as Sugar bear's 80-150.   I ask when was the last time he ate-an hour to an hour and a half ago.  What was his BG?  120.  By this point paramedics are finally showing up and I tell Jeff my thoughts are with him and we head back to our van.  As we get there a woman is getting in her van and telling one of the people in the
neighboring vehicles that she's heading to the hospital for her diabetic son.  This all happened in less than a half an hour.  Twenty minutes.

Then the movie started.

Sugar Bear's BS were fine during the movie and we did the evening Lantus in the dark.  When we got home we had another half hour of raising his BS and testing so we could all go to sleep.

The quotes at the beginning were what my Goofy Teenager said before going to sleep.  Oh, and Spider-Man was good.

 "...what makes life valuable is that it doesn't last forever, what makes it precious is that it ends. I know that now more than ever. And I say it today of all days to remind us that time is luck. So don't waste it living someone else's life, make yours count for something. Fight for what matters to you, no matter what. Because even if you fall short, what better way is there to live?"

We just hope that little boy is okay.

Friday, May 2, 2014

Quick blip

Yesterday not one number was in range and only one was less than 200.  Called the endocrinologist and they said if it doesn't change then we change the ratio down to 7:1.  :( They mentioned that they think the "honeymoon" is over.  This makes me a bit sad.  Four months.  Anyway, we read the Medikidz comic book last night for bed.  Sugar Bear said it was weird and that he already knew all that stuff.  It wasn't what I expected either.  Back to looking for comic books with type 1 that are "fun".

Have a neurology appointment today for Goofy Teenager.  Maybe we can get some direction and help with the headaches.  Fingers crossed.

Hoping to head to the drive in tonight and see Spider-Man.  I can't wait.

Thursday, May 1, 2014

The Monster in the Room

It'd been about a month since we did insulin ratio changes.  Yesterday we changed all but one.  He is now 8:1 for all meals and at 13 for Lantus.  Even with the changes he ran high yesterday and of course we're now second guessing.  "Did you eat anything out of the fridge without telling us?"  It's made all of us uncomfortable.  And I don't know how to not worry that he's eating and not telling.

So I had a day yesterday of reliving four months ago in my head.  How do I stay aware?  I don't ever want to miss the signs of something again.  Did you know that with an autoimmune disease like type 1 it increases your risk for having other disorders like Addison's disease, celiac disease and thyroid disorders?  I have to stay on my toes.  I will not miss signs.  I keep telling myself that it's critical just like keeping on top of his diabetes.  I check his feet now.  We daily ask how he's feeling, to the point that he sometimes gets exasperated.  I don't want to miss something so vitally important, again.  I don't like 20/20 hind site.  I don't like what almost happened to my Sugar Bear and I don't like the guilt.  I want to protect him.  I want to make it better.  I want to find a way.

And because of that drive I'm diving into advocacy, fundraising, and research.  I've joined JDRF and will be walking June 7 to raise funds to make Type 1 Type None.  If you'd like to donate to our walk we are Team Sugar Bear.;jsessionid=569886F06527EC4077CB207AF9F334A2.app332b?pagename=walk_homepage
 I want a cure.  I don't want to give up on that hope even if it means I never get to a place of acceptance with my son's disease.  I will not let this monster control us.