It Takes A Village

I don't know how patients do it alone.  I truly think I had Caregiver Burnout last month.  And, I think Jessica had Diabetes Burnout.  We were both just so sick of every check, and dealing with every high and low.  Math tests that had to be taken during recess due to high blood sugars.  Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on.  I was feeling unusually down, and I think Jess was too.

And then something wonderful happened.  It was time for the Children With Diabetes Focus on Technology conference.  Home.  Friends.  No explanations necessary.  No food scale necessary.  Inspirational people.  And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.

I came back from the weekend refreshed, full of new energy and ideas.  And, Jessica came back happier and less angry.  It truly takes a village.

And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes.  I can't believe the wonderful people I have met because of diabetes.  Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed.  I have watched my T1 hubby become hopeful again, happier, less alone.  I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed.  But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes.  We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more.  They are inspirational.  They provide support to our whole family.  They give me perspective.  They lighten my load.  They share a kinship with my T1 hubby.

So many "wow" moments, so many inspirational moments.  Below are just a few of the tweets from the conference:

"Avoid miscarried helping."

"No one is truly independent.  The hallmark of being an adult is knowing when you need help and asking for it."

"Great response to teenagers: how'd that work for you?"

"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."

"Ask your child how they would like you to ask them what their blood sugar is."

"Give your child the gift of struggle."

"Fair is something you buy tickets to.  The rest is called life."

"Preschoolers may think they did something to cause diabetes."

"My daughter is not a mouse.  If she was she would have been cured 300 times by now."

"Pre-bolus and check one more time a day."

"The person with diabetes who knows the most lives the longest."

"We need to change to a prevention minded society."

"You can set the bar, but it's important to know that bar moves."

"It's ok if diabetes slows you down, but don't let it stop you."

And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes.  Greatness always come in the face of obstacles."

This is a ridiculously hard walk, but you don't have to walk it alone.  It takes a village to raise a Type 1 child.  And, it takes a village to be an adult with Type 1.  Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.

Taking the Bird's Eye View

I've been reminded of an important lesson this month.  Take the Bird's Eye View.

After a long period of absolutely amazing blood sugars, this past month brought numbers more out of control than I have ever seen.  None of our tricks worked.  We increased her insulin by insane amounts and still she remained high.  I experienced frustration unlike any I have known, and a sense of helplessness for the first time since her diagnosis.  I finally called her amazing health care provider, who of course was...you guessed it....amazing.  Her first question was "what's going on over there?"  She, too, was surprised by how much Jess's insulin requirement had jumped.  Her theory was a combination of growth and that the honeymoon was definitely over (the period of time when Jess still makes some insulin on her own, before complete pancreatic death).  I had actually thought that this had happened awhile ago, but based on all the equations of insulin needs, etc it seems to have now happened.  Luckily, I already mourned this so there was actually zero emotional impact of her stating it.  And, I was so incredibly relieved to have someone else help out.  My confidence was shot, I was emotionally and physically drained, and I needed help.  Not something at all easy for me to ask for, but I am getting better at it as life goes on.

Jess's healthcare provider made suggestions, and was available all weekend to help (she is truly hands down the best).  Things are still not what they were a couple of months ago (and she's been sick this week which of course does not help!), but they are leveling out some.

But, all of the above is really just boring background.  I realized this past month that I forgot a very important lesson.  Even though diabetes requires so much of our time and energy, especially when it is completely out of control, we can not let it become our sole focus.  I spent too much of this past month frustrated and upset.  There were too many times I forgot to look past all the high numbers on the meter and see the beautiful little girl in front of me.  I worried too much about the high sugars coating her vessels, and forgot to focus on the here and now.  The tragic, absolutely devastating events of last week in Connecticut are a deeply painful reminder that none of us truly knows how long we have.  And, although blood sugar control is important both to prevent short and long term complications, it is perhaps just as important to also focus on the here and now.

I realized this one night while sitting in amazing front row seats at the symphony.  Jess is an avid piano player and had the perfect view of the guest pianist's hands.  The absolute joy on her face throughout the evening was palpable.  Her blood sugar was cruising along in the 300's and yet she clearly was experiencing true and pure joy.  I couldn't help but sit with a crazy grin on my face the entire performance.

Although so easy to forget so much of the time, diabetes is but one facet of my beautiful, amazing daughter.  And, when it decides to revolt and cause deep turmoil, I need to remember to take the Bird's Eye View.  These high numbers will pass, but so will time.  And, I will never get that time back.  Jess will never again be 10 years and 4 months old.

So, perhaps what I have learned this past month is that there are many sneaky ways diabetes can win.  We very carefully don't let it stop Jess from doing anything.  We make sure she is as unaffected as possible by these rough times.  But, she and we need more than that.  We need to remember to focus on the great big wonderful enormity of Jessica, even when part of her decides to create havoc.

Pictures Say It All

This has not been a good week.  Understatement of the year.  Here's the kicker about diabetes.  Just when you think you've got it down---an awesome HgbA1c, knowing the in's and out's of I:C ratios, basal rates, a pro at carb counting...out of nowhere diabetes sneaks up on you and beats you down.  Apparently this time in the form of a pre-adolescent girl entering a major growth spurt.  Her little body is spitting out all kinds of hormones making her insulin needs shoot way up.  And, I mean WAY up.  Despite bolusing her every two hours throughout the night and raising her basal rates faster than I ever have, I have been unable to beat these highs.  Strangely, only at night.  Her daytime numbers have been pristine.  But, these hours are likely when she is spitting out the most growth hormone.  I am exhausted, frustrated, and to be honest a bit scared.  But, tonight I entered the night hopeful.  I received some much needed advice from another T1 mom who has a child that has already been through this.  She recommended a temp basal of +20-30%.  Armed with new tools, I went to bed hopeful.  An hour later I woke to check Jess and was greeted by the lovely 373 (and slant arrow up on the Dex to add insult to injury.)  Sure enough, ketones.  And, the pulled site revealed the dreaded kink.  I wonder if I am the only parent who feels massive amounts of guilt when it is the site that I have placed that kinks.  So, now I will wait for the ketones to clear and her numbers to come down and see what the night will hold.  Just like any mom, I will watch over my sweet girl.  And, I will take comfort in one of my favorite quotes: "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain."  No matter what kind of blood sugars this night brings, tomorrow is another day, and another chance to dance in the rain.

Blood sugars in the steady 200-300's despite waking every 2 hours to check and bolus, and adjust basal rates.

An exhausted Jessica even though she was able to sleep through most of the checks.  Constant highs don't feel good.  Note the "I Can Do It" bracelet.

Tonight, a kinked site.  Site changes at 10 pm- no fun for Jess, or for mom who needs to stay up to make sure the ketones clear.

Nope- that site is not supposed to be shaped like an upside down "U."   And, despite the fact that I know these things happen, the mommy guilt is there as I am the one that put in this sit tonight.

Work

Diabetes is winning this week.  It is hammering me.

This week has been yet another good reminder to me that patients can try their hardest, give 200%, and still not achieve the outcomes that physicians have been trained to desire.

On the surface, Jessica has had a "horrible" diabetes week.  She's been in the 200s more than she hasn't.  And, yet, I have had no sleep.  I have worked my ass off trying to get her numbers under control.  She has undergone extra site changes as I have had to rule out failed sites as a cause of these high numbers.  In short, we have put forth extreme effort and have absolutely nothing to show for it.

Patients often drop off logs for physicians to review.  It is so much about numbers.  HgbA1c, LDL, blood pressure, weight.  Yet, physicians can forget what is going on behind these numbers.  Checking blood sugars is work.  Trying to eat correctly is work.  Exercise is work.  Staying up all night multiple nights to try to achieve control is work.  Even "just" remembering to take a pill every night is work.  A patient can work incredibly hard, but a logbook filled with 200s will not reflect this.  Is there any acknowledgement of this work?

Perhaps the patient who seems to have "given up" is just sick of expending so much work and getting so little positive feedback, or seeing no reward of their effort.

Tonight I was tempted just to sleep.  I have had a ridiculously hard week at work, the husband is once again working nights on inpatient, and despite staying up all night I have not been able to get Jess's numbers out of the 200s.  It would be so easy to give up.  After all, living in the 200s won't hurt her much in the short term.  It is so easy to see how this mentality can win.  And, I have knowledge, drive, resources, support.  What about the patient alone, or who can't afford the strips for repeated checks?

We're losing at this number game this week.  It is not due to any lack of work.  In fact I am so completely exhausted and frustrated that I am near tears.  I secretly want to give up for a short while.  I am close to diabetes burnout this week.  We "should" be able to control this.  The basal rates and ISFs "should" follow the rules.  But, she's growing and so they are not.  Human bodies are not perfect little experiments where all factors can be controlled.  I am doing my absolute best, but her body seems to randomly be spitting out growth hormone or cortisol, or some other unmeasurable substance that shoots her blood sugars up.  And, despite rage bolusing, multiple changes to her basal rates, and complete exhaustion on my behalf I am not any closer to achieving blood sugar control then I was three nights ago.

Yet again a good lesson in humility for me.  Patients can work so hard behind the scenes.  It needs to be acknowledged.  Even if HgbA1cs and LDLs, blood pressures, and weights are not "at goal," it does not mean there has not been work.

A Fly on the Wall

I have often wondered what your days at school really look like.  How do you do it?  What does it really look like?  I hear random bits.  The girl that teased you, the test you had to take during recess, the pride when you know you made a good choice.

Yesterday I shared part of your day.  Your school had classroom visits, and I sat and watched you like a fly on the wall.

I didn't know that you wear your diabetes bag on your back the entire day.  I wonder if it is uncomfortable to sit with it on your back as you lean against your chair.  I see you go to the front of the class to write on the Smart Board and it is there-on your back.  As your mom, it seems to scream out "my daughter is different...she is not like the rest."  I ask you about it at lunch and tell you that you could take it off and put it on your chair.  "No, mommy- I want it on my back- I can't lose it there-it has everything I have to have."  I realize this bag represents your safety.  As long as it is on your back, you can take care of yourself.  In a world that I don't think you fully trust to take care of you, you seem to know that as long as you have your bag, you will be ok.

I watch you check your blood sugar before the math quiz.  You miss all the verbal instructions the teacher gives as you check.  You smile as you hold up the meter to show me the "104."  I remember you telling me how the teacher sighs if your blood sugar is out of range, and how much you hate giving up recess to take the quiz then.  I find myself once again wondering if the right thing to do is really allow you to reach your full potential by not taking tests when your blood sugar is high.  And, then I think what a ridiculous question that is.

I sit with you and your friends at lunch.  I see their lunches.  "See mom---see what they all have for dessert?" you ask as you hold up your one small peanut butter cup.  I am so sad as I think "but their pancreases work, and if they eat these desserts they will still be able to learn well...while you will be in a hyperglycemic fog."  I tell you I do see, and I promise to myself that I will try to give you a bigger dessert but realize that something else will have to go.  Your friends may be able to eat a 100+ gram carb lunch, but we have seen time and time again that the best I:C ratio does not hold with high carb meals.  I can't explain this to you.  And, I shouldn't.  But, I find myself hoping that someday you understand why your dad and I have done so many things.

And yet, I think you are happy.  You hate diabetes most days.  And, the lows and highs are relentless.  You still fear pump and dexcom site changes.  And, you do get teased.  But, you also have found good friends.  And, above all else, you are still just a ten year old girl.

I am so proud of you.  Every single day.  And, as I sit like a fly on the wall I almost tear up with this pride.  I know deep in my heart that this is YOUR life story.  I may have suitcases full of my own emotion and baggage about your diabetes, but they are mine alone.  You are living your life and triumphing.  I know diabetes has made you stronger and healthier than most your age.  I see how much more empathetic you are towards others that also have their own diseases to manage.  And, I know that because of diabetes you will do great, amazing things.  You are my super hero, Jess.

Together

This has been a rough week.

Numbers all over the place.

Almost zero sleep.

The fatigue. The emotions.  Expending so much effort 24 hours a day.

Complete exhaustion and seriously, I just need a freakin break.

Thursday:  I rush home in between meetings to pick the girls up from school in order to get everything ready for the babysitter.  I am greeted with Jessica visibly upset.  "Get me out of here...I just want to go home."  I quickly usher her out of the building.  She is in tears before we reach the car.  In the safety of the car, the floodgates open.

"They told me I couldn't finish my lunch.  They told me I had to throw out my food.  I told them I had Type 1 diabetes, and I needed to eat my lunch, but they wouldn't listen.  My friends told them I had Type 1.  She said she knew I had Type 1, but lunch was over and I had to throw out my food.  Mom, I had over 30 grams of carbs left...I was afraid if I didn't eat it I would get so low I would pass out." More tears.  "I was so scared, mom."

Jessica stood strong.  She refused to throw out her food.  And, so, the lunch aid went to her teacher.

Luckily, her teacher handled the situation appropriately and took her to the nurse, where she finished her lunch.  Although, why she couldn't have just finished it on the way to her classroom is beyond me.

The day devastated Jessica.  Having to stand up to an adult and say no.  At the age of ten, this is not an easy feat.  She was so upset by the time her teacher came, that she cried in front of her class.  Embarrassment, Humiliation, Fear.  All over some uneducated adult's decision not to listen to a child who knows her own health condition better than anyone else.

I was filled with so many emotions.  Extreme Anger.  It took all I could to go home and write a polite but assertive email, rather than rushing into the building and screaming and yelling.  But, also Pride.  Jessica knew what the right thing to do was.  And, when challenged she held her ground.  She did what she needed to do to make sure she was safe.  And, although it cost her humiliation, fear, and embarrassment...she did it.

But, it angers me she had to.  Despite all the hours and effort we have put into making sure she is safe at school, things like this still occur.  And, they will continue to.  Her school is amazing.  Her teacher, the nurse, and even the principal handled it well.  The principal even came to check on her later in the day and make sure she was ok.

And, it is not the first time she has been treated wrongly at school.  At her old school she was forced to check her blood sugar in stairways.  The nurse would psychoanalyze her sugars..."Now, Jessica...what do you think could have happened to make you 200?"

We have always responded quickly and assertively, but the truth is that these things will continue to happen and I know it.  A 504 plan, while a good start, can not fully protect our children when we are not there.

November is National Diabetes Month.  A time to remember to educate, advocate, and fundraise.  These are the tools we have to help our children.  We must educate those who don't understand.  Many will never "get it," but we at least need to know that they have enough knowledge to keep our children safe when we are not there.  And, we must advocate.  We need faster FDA approval, we need more funds dedicated to Type 1 research, we need life and health insurance policies that are fair and not based on lumping life expectancies of Type 2 and Type 1 diabetics together.  We need school policies that keep our kids safe, and that don't allow discrimination based on a health condition that is difficult to control.  And, we must fundraise towards a cure.

But, until then, we must support each other in this journey.  We cannot do it alone.  We are stronger, and our kids are stronger when we stick together.  Our life was changed by finding Children With Diabetes.  I wait impatiently for the next conference in February, where for one weekend we will once again be enveloped in support.  And, where we will have the chance to support others.


Together, our children will grow up healthy and strong.
Together, we will support each other.
Together, we will find a cure.

Diabetes Does Not End

Diabetes doesn't care if you're exhausted, have work deadlines, or your beloved grandmother has died.  It doesn't care if you're sick, or overwhelmed, or just plain sick of it all.  It doesn't care if you have a math test, or a race to run, or are in the middle of an important work meeting.  It is selfish and demanding and relentless.

Jessica had her endocrinology appointment this week.  I love where she goes, and her caretakers there.  But, I have to be totally honest.  With Type 1 diabetes, 99% of the management happens at home.  We lowered her Hemoglobin A1c from 8.1 to 6.8 in three months.  This is a huge accomplishment.  And, it took an enormous amount of work.  And, 100% of it happened at home, with no communication between her diabetes care providers and us.  This is not to say that they would not be available if we were to ask for help.  But, once you learn the ins and outs of changing all the basal rates and I:C ratios, it is really a self management disease.

Last visit we were congratulated on lowering her Hemoglobin A1c from 8.2 to 8.1.  I am a physician.  I know that this could have been laboratory error alone.  And, while I hugely appreciated Jessica's provider trying to give us encouragement, and I do the same thing as a physician, this really bothered me.  I try so hard to motivate my own patients..."wow...you were 322 pounds last time I saw you, and now you are 320 pounds....great job!"  I know patients are all just doing their best.  I am just doing my best.  But, I left that visit telling myself that I just knew we could do better.  Again, this is not to say that we didn't appreciate the encouragement, or that I am not encouraging of my own patients when they make small positive changes.  But, I felt that we had reached complacency.  We were used to the pump.  We were used to diabetes.  We had been managing things the same way since we got the pump, and we were getting positive feedback.  And, it was a lot of work already.  Being congratulated on moving a lab value by 0.1 just seemed to highlight the complacency.

And, so things changed.  Every family living with a Type 1 child needs to figure out what works best for them, and there is no "right" way of doing things.  The hubby and I had been co-managing Jess's diabetes since she was diagnosed.  For a number of reasons, we decided I would take over sole management of her rates and ratios.  Part of this stemmed from conversations I had at CWD FFL with another mom whose husband and daughter also have Type 1.  We discussed how managing their own diabetes was already such a burden for our husbands, and by taking on the management of our daughters we could help not add to that burden.  I also realized that when two people manage a condition, no one truly takes ownership.  Some days I would get home from work late and not look at her meter figuring the hubby had done it.  Other times I would wake at 3 am and check her blood sugar without being aware of what had already been done.  This worked fine.  But, I have never been one to settle for fine.  And, I just knew we could do better.

And, so Jessica and I became a micro-team within our little family of four team.  And, we were super stars.  No matter how busy or tired, every single day I reviewed her meter and took action.  I have woke between 2-3 am nightly to check her.  We nailed her basal rates and I:C ratios and she jumped up and down with glee and ran to tell her diabetes provider when the machine at the office flashed 6.8 this week.  And, I was thrilled and proud.

But, the problem with diabetes is that it does not end.  I am used to cramming for exams and then feeling the relief when they are over.  Medical school and residency rotations may have been challenging but they ended.  Parts of my job are horribly demanding but there is relief when deadlines arrive and there is a temporary pause.  A day full of seeing patients ends.

But, there is no end here.  I am tired of it all and I just want a break.  My grandmother died.  I just wanted to grieve, but diabetes was there with its highs and lows that could not be ignored.  I ran my first half marathon as part of a relay team (6.55 miles!) and even though my kind husband volunteered to wake to check her at 2 am, I still woke up.  Work meetings interrupted as her blood sugar is high and the babysitter is scared.  Another growth spurt resulting in once again rates that need to be changed.  Her Hemoglobin A1c was fantastic...can't we take a break now?

But, diabetes does not end.  And, I must once again dig deep inside to find the energy and strength that I need to continue to keep it in its place, all while continuing all my many other responsibilities.  I am filled with such admiration for my husband...almost 24 years of doing this day in and day out.  I simply don't know how he does it.  And, yet he does, all while dealing with all the other stressors life brings.

I am filled with admiration for my daughter.  I am filled with pride at the decisions she makes every day.  Choosing to delay dinner as she is close to 300.  Telling me she thinks a rate needs to be changed.  Dealing with all the little comments and looks that occur daily.  Handling the miserables highs and lows.  The site changes, the numerous pricks that have left permanent callouses on her small fingers.  She handles it all with such grace and strength.

At our visit this week her provider asked her to talk to a newly diagnosed family.  The little girl was seven-the age Jess was when she was first diagnosed.  I was so proud that she wanted to help.  And, I can only imagine how much that would have helped me at diagnosis to see such a healthy, happy ten year old who was diagnosed the same age as my daughter.  She amazes me.

I am filled with admiration for all the wonderful T1s I have been privileged to meet.  I am amazed by what they do to their bodies day in and day out.  The way they handle the highs and lows.  The littlest ones who can't even understand what is happening, to those I have met living with type 1 healthily for 50 years or more.  They are my inspiration and my heros.  And, they give me strength.  If they can do it, then surely I can do it.  Diabetes may not end, but neither does the determination of the human spirit. And, we can do this.