Confessions of a Tired Pancreas

I can't even believe that I am going to put these thoughts on the screen, but since this is my therapy sessions I may as well 'fess up to my complete inadequacies here.

Please remember that I am doing my best...

* It has been twelve days since Mikaela started using her insulin pump.  I have had no contact with the Endo's office since we walked out from our training session.  None.

* I have called the office only once. I was promised a return call that never happened.  I feel guilty that my pride(?) or ultra-introverted personality (?) have kept me from calling again.

* I did submit blood glucose reports for last week online (three days after the phone call). Silence <---- the only response I have received.

* The school nurse (bless her heart) was unhappy with me for not making more effort to contact the Endo. After a rough morning of high numbers last week she contacted them in an effort to encourage them to call me.  I still haven't heard from them.  Do you see a trend here?  I'm really trying not to over analyse this, but I'm beginning to feel ostracized.
   
* I have adjusted basals. I'm fairly happy with them so far, but I am still tweeking things (I'm finding the post-breakfast time to be particularly problematic).  I am basing all my adjustments on things I have read, bg's (obviously) and gut instinct.  I think we're doing pretty good considering who's doing the adjustments. With the exception of a few rocky mid-morning readings, her numbers have been sweet.

* I am letting her run a little higher at night than the numbers the doctor had recommended, especially nights that I work. My husband is doing his best, but he has no idea what to think about any of her #s and it makes him nervous (in other words he's dad, not mom -no offense to any pancreatic dads out there).  I have already forgiven myself for this and am going with the promise that this is a process and eventually I will be more comfortable running her closer to range at night.

*As far as I know I have done nothing to offend the Endo.  We have always had a good relationship with her. (Even years ago when Mikaela was diagnosed the first time). Mikaela loves her.  I understand that she is not the one answering the phone.  The communication problem is lower in the chain of command.  Have I thought that we should look into changing doctor's?  It has crossed my mind, but not in an active way.   We have an appointment in a week and a half. It will certainly be a point of discussion. I will not take it well if she expressed frustration with me about the lack of communication. Yes, it ultimately is on my shoulders, and if things were going poorly I would certainly be demanding their attention, but we're doing ok.  Not perfect, but ok.

* Today was an usually active day for us.  A long play date that ended (unexpectedly) with the kids jumping on the neighbor's trampoline.  This terror inducing activity <--for me, not the kids, always brings Mikaela down super fast and she refuses to acknowledge her lows until she's LOW because she having  so much fun.  She had some uncovered carbs, but it wasn't enough to keep her from dropping.  I'm sure this could have been handled better with a temp basal as well, but I didn't think of it until afterwards.  Boo for me!

*  I know I have a lot to learn!  I already have a long list of questions to take to the doctor's appointment.  I want to learn all I can so I can so the best job I can as mama pancreas.

* I am relieved and grateful to God that so far things are going well for Mikaela in this transition.

And in case you were wondering...
Thanks to God,  Robert's surgery went well and the mass they removed was benign,  I can't even begin to express the relief and joy I feel.
That's where I am going to leave things tonight. I have been writing this while waiting for him to get home from an evening out with his friends.  He just walked in the door so I am going to try to get some sleep.

Pumping - Day 1

I think this picture speaks for itself.  She's so happy right now.  It makes all the confusion and frustration worth while.

There was certainly a lot of information to try to absorb today.  Maybe too much.  It's such a different way to look at things...

(and that's where I fell asleep)
••••••••••••
Fast forward to today.

Last night was a rough night.  Here's the rundown:
9:00 163 (small correction bolus <-- wish I hadn't done that)
12:00  111 (glucose tab in order to bring her back up to optimal nighttime range of 120-140.)  I didn't re-check because I was not overly concerned about this #.  Stupid.
2:00  118 Cool. So close to where she should be, we'll call it close enough.  Stupid.
4:00  58  Juice box.  Beating myself up for being stupid.
4:30 139 . Good, but for how long?
6:30. 104. Glucose tab. A week ago I would not have been concerned about this #,  but considering the continual drop of the night, I was anxious.
7:30. It's breakfast time, but there's no school today.  I'm so sleepy....zzzz
8:00  I woke in a panic.  Thank God she was 103.

The low run continued through lunch (66).  Dinner number was solid (92). 

I called the doctor's office this morning.  I know it was only our first night and maybe I need to be more patient, but i just feel like there was a lot of fast acting sugar involved in the night.  Maybe it could be avoided? I know basal rates need more than one night to see what they are really going to do.  I know I made mistakes.  I was just hoping to have an unbiased assessment of the night.   The nurse was supposed to call back, but never did. 

Grrrrrrr.  Do they want me to figure this out on my own already?  Not happy.  I WILL figure it out, but they should have called to address my concerns.

Tonight I have to work.  Dad will be on duty.  I'm a bit nervous about that.  I know he'll check her, but he won't know what to do with the numbers.  I have a feeling I'll be on the my cell phone a lot ( a big "No No" at my place of employment).

Here's to hoping for a smoother night for Mikaela and that I won't get fired for being on my phone...

Let the Pumping Begin

Tomorrow is the day.  Finally.  It's been three months since we had our pre-pumping class.  Three months of one mishap after another.  But the time is finally here.  Tomorrow Mikaela will begin using her insulin pump. The Omnipods have been sitting in the cupboard for at least a month.  The PDM, still in the FedEx box it came in.  Somewhere along the line our paperwork was lost?!   Apparently it took something close to a small miracle to get things straightened out.  This has been such a frustrating experience.

Tomorrow we start fresh.  I will work very hard to put my frustrations behind me and move forward with a positive attitude.  I know the benefits of pumping.  I know that this is a good step for Mikaela.  It will allow her better control and give her back at least a portion of the freedoms of childhood.  All good things that I truly want for her.

But I am scared to death.

The thought of this little battery operated machine keeping her alive makes me want to scream.  What was I thinking?  How can I trust this contraption?  I think my head might explode.

Tomorrow we will meet with the pump trainer.  I will swallow my fear and anxieties.  I'll be all smiles and "positive attitudey".  Really I will.  For Mikaela.  I will try to absorb all the information I can in order to make the transition as smooth as possible.  I will do all I can to prepare for bumps in the road.

And so will begin the next phase in our diabetic journey.

This week is full of anxiety for me.  Pumping start up tomorrow.  Robert's surgery Thursday.  I just want my babies to be safe and healthy.

I am one anxious mama right now.  Anxious, but hopeful.  Thankful that God is God no matter what.

Mikaela created this photo of her last shot of Lantus  tonight. (I can't figure out how to rotate it)

Robert

Robert.  What you don't see is that he is holding his baby brother as we walked around the science center.

This is Robert.  My first born child. Keeper of my heart.  He's a good kid. Extremely caring and compassionate.  He loves his brothers and sisters unconditionally.  He can be quite vocal about the ways they annoy him, but he is the first one by their side when they are upset.

Last week when a dear friend of mine unexpectedly passed away , Robert was the one by my side.  During the funeral he sat with me (instead of with his girlfriend - <shocking>), and held my hand. He knows me well, better than almost anyone.  He can tell when something is bothering me from just a glance.  He gets me.  And he loves me anyway.

Robert carrying Mikaela because she was too tired to walk ~or she has her brother wrapped around her finger.

 

At 16, he can be quite trying with his teen attitude.  Oh yes, he knows way more than I do about life ~ I am so naive.  But even in those moments of know-it-allness, he still makes me smile. 

He is the kind of kid who isn't embarrased to hug his Nana even when surrounded by his friends.  Who sincerely enjoys doing things to help our elderly neighbor.  In fact he'll sit and talk to her for hours just because he doesn't want her to feel lonely.  If you could flip through the pages of our family albums, you'd almost always find him pictured holding one  of his younger siblings or hugging a family member.  He loves deeply and without conditions.

The 5 crazy kids at the park last fall.  As always, Robert is at the center of the fun.

Today my Robert was scheduled for surgery to remove a mass in his neck and another under his collar bone.  The doctors don't know for sure what is going on inside his body.  They know only that the masses are both in his lymph nodes.  The plan was to remove the one under his collar bone (the one that continues to grow), biopsy it, then decide how to proceed with the other. 

The surgery didn't happen today because Robert woke up with a nasty cold and fever this morning.  We spent the day at the hospital waiting for the doctors to decide if they wanted to go ahead with the surgery despite his cold.  In the end they decided it was too risky.  The doctor said we should wait 10-14 days to be sure the cold was gone...then he felt the mass on his collar bone for the umteenth time this week.  Suddenly 10-14 days turned in to "we'll fit him in to next week's schedule"

It could be nothing major, the lymph nodes could just be impacted, unable to drain properly.  Or it could be something much more. 

 So here I sit with that familiar knot in my stomach.  The one that was there for months after Mikaela was diagnosed.  That knot makes me feel like I can't breath, I can't think, I can't live. 

Prayfully this will all turn out ok.  I hope I'll look back next week and scorn myself for being dramatic, too much of a worrier. I'll be asking myself how I could get so worked up over nothing.

For right now, though, all I can do is pray.

Hating Diabetes

Exhaustion.  The constant companion we as D-moms all know so well.  We learn to wear the bags under our eyes like a badge of honor. A sign that we are on the front lines of this war to keep our children safe. The exhaustion is a sign of our vigilance, our vow to never let the enemy win.

Somehow I manage to fool myself into thinking that if I carry enough of this burden that my sweet girl won't have to feel any of the exhaustion herself.  If I do a good enough job as her artificial pancreas that she won't have to have the darkness under her eyes or that fuzzy feeling in her mind.  She'll be free and clear and happy.

But there are days when I see it.  When she can't hide the fatigue in her soul.  She can feel D's rotten stinky breath on the back of her neck and the effort of keeping one step ahead of it has worn her down.

It breaks my heart.  She will carry this burden alone soon enough. But right now the battle is supposed to be mine to fight. I don't want D bullying her, making decisions for her, burdening her soul.

The other day was a tough day for the D warriors in our family.  Mikaela had a badish low at school.  When she's in a dark moment like that she wants me.  No one else will do the job of calming her. Unfortunately, I was in a building (at the funeral of a dear friend) where I have no cell reception. Of course.  She was having a low that required my attention, but I was out of reach.

Eventually contact was made and I spent the second half of the funeral standing in the parking lot talking on my phone to a scared little girl who wanted her mommy.  Not being able to reach me right away seemed to make it all the worse for her.

After about 35 minutes Mikaela was doing better and she headed back to class.  But the damage was done for the day.  Her soul had experienced the worry that I try so hard to keep from her.  I could see in her eyes that evening that D had kicked her butt. It had pushed her and bullied her and left her feeling intimidated and exhausted from the fight.




Three hours after her low...it can still be seen in her eyes.


 

Just for the record ~ I hate diabetes.

Meri

I have been putting off this post all week.

At a loss for words.

Sometimes mere words cannot convey what we feel.

But I will try.

This post is for Meri. We all know Meri from Our Diabetic Life.  I don't need to explain who she is.  I don't need to explain what she means to the DOC. Especially what she means to us D-mommas.  She is everyone's friend.  Willing to take time to talk, answer questions, lend an ear or a shoulder to cry on. A rare oasis on this diabetic journey.

When Meri lost her sweet husband, Ryan, to cancer last week, it was felt by so many people that love them. I don't know Meri IRL, probably never will. But I call her a friend. Through her blog posts she lets the world know her and her family and makes each of us feel her friendship. It is truly a gift to be able to make strangers feel welcomed and comforted while never even being able to look into their eyes.

So here is my feeble attempt to give a little love back to someone who gives so much.


Meri,
We love you. Even those of us on the outskirts of the DOC. We love you. We love Ryan. We love your boys. Throughout this tragic ordeal you and Ryan have shown the world things it has long forgotten; love, devotion, faith, grace. It is a blessing to have seen the love. To have prayed the prayers. To have cried the tears. We want to hold you up, you and your boys. We want to wrap you in the love and friendship that you have taught us through your amazing gifts of love and compassion. I pray our love will not feel like a burden, like you must put your grief into some tidy little box wrapped up in the expectations of others.  Be as weak, angry, and confused as you need to be. We may not be able to fully comprehend your pain, but we can be here to pray for you and offer you love, friendship and support.
There are so many things that I don't understand about life on this earth. What I do know is that God is good. He will never forsake you.  He understands your grief and all the emotions that come along with it.  His blessings will flow through any situation. I am sorrowed by your incredible loss, but humbly grateful that God is faithful and He has shown His ultimate love for us by sending His Son to conquering death so that death cannot conquer us.  God in His ultimate wisdom gave us love as an eternal gift.  It is so comforting to know that death does not stop love. It may separate our bodies, but cannot separate our souls. While Ryan waits for his sweet reunion with you and those he had to leave behind here on this earth, it is wonderful to know he is in a place of peace and joy.
I am eternally grateful for the opportunity to "know" you and Ryan.To be reminded of the beauty of love.  May God bless you and your boys. May He always keep you close to his breast and comfort you as only He can.

Holding you all close in prayer.

Lisa

I Am Diabetes

I am diabetes.
I know when you think of diabetes you think of me.
You see me pricking your finger.
You feel me plunging the needle into your  skin over and over again.
I am the mad scientist in your nightmares.
You want to scream when you hear my voice asking if you feel ok.
When I ask about your bg check it burns your mind and you just want me to stop.
I know you hate it.
When I talk to you about carbs and insulin you want to cover my mouth with your hands until no more diabetes-speak can come from my lips.
I know how you hate me for being the face of the burden you carry.
When your numbers are off and you're stuck on the rollercoaster of highs and lows you lash out at me
You say things no mother should hear.
Things that would bring a sharp punishment if they came from your siblings.
Your words hurt me.
Badly.
But I can take it.
If carrying this pain and burden in my soul somehow helps you on this journey
I will bear it.
I will swallow my pain.
I will take a deep breath and wait in silence as you hurl all the hatred you have for diabetes at me.
Because I know to you I am diabetes.
In those dark moments when you soul is exploding in pain
When the outrage at the injustice of this disease is more than your little body can bear for even one more breath
You can blame me and hate me and hurt me
But I will love you.
And I know you love me too.
In the heat of those moments, the low or high or falling or climbing bg you can't feel my love
But it is always there
When you're lost in that madness your love for me is locked away where you can't find it
But it's there.
I want you to know that I know it's always there.
I know it is me you cry for when a low has you scared.
It is my hand you reach for when you're nervous and feel different because of this disease.
When I kiss you and whisper my love to you as you sleep in the night I see you smile and hear your contented sigh.
In those moments my soul is refreshed.
My love for you strengthened even more than I ever knew it could be.
In those beautiful quiet moments I know your heart sees me.
Your mother.
The one who loves you with a blind and unending love.
As you sigh your happy sigh I know that your heart knows I'm there even while your body sleeps.
In those moments I am not diabetes.
I am your mom.
That's all I've ever wanted to be.