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.

You CAN do this

"You can do this."  I repeat this to myself almost every day.  My daughter has not taken off her "You Can Do This" bracelet since she got it.  I don't know if Kim Vlasnik, the creator of the "You Can Do This" project has any idea how many lives she is truly impacting.  The power of these four simple words is huge.

I see so many diseases and so much suffering on a daily basis.  It is hard, and perhaps only human, to look at every disease I see and not compare them to Type 1.  I am no doubt biased, but I have yet to see a disease that requires so much hourly (secondly?) work.  And, I am not sure I have found one that is so laced with guilt.  This by no means makes the other diseases easy to have.  But, Type 1 seems to be its own unique daily adventure.

It has been almost three years...there is no end is sight.  And, the mantra "You Can Do This" sustains both myself, my daughter, and my whole family.

So many normal moments that are impacted by Type 1.

We baked cookies together the other night.  I stopped doing this for at least 2 years when she was diagnosed.  I LOVE to bake (cooking not so much).  I missed it.  I needed to bring a dessert for work, and looked in the cupboard to realize decorated sugar cookies were the only option.  I didn't intend for her and her sister to help.  But, they quickly realized what I was doing, and like any eager ten year olds popped in to help frost the cookies and decorate with sprinkles.  I saw her lick frosting off her fingers a couple of times.  Who doesn't do this when they bake?  I didn't plan ahead and bolus her for this unpredictable moment.  And, I truly didn't see her take that many licks.

310.  The highest number we have had in weeks.  "I hate diabetes," Jessica yells when she sees it.  I miss when she was seven in some ways.  When the numbers meant nothing to her.  When she didn't understand what it meant every three months when she went to her diabetes appointments and heard the value of her HgbA1c.  I hate that we can't spontaneously bake and decorate cookies without later having her feel guilty.  Of course, I tell her that we only do this on special occasions, that we have insulin and it will get that number down quickly, and that this is absolutely nothing she needs to feel badly about.  And, of course, in my head I think "why didn't I bolus her?"  But, how do you judge how much frosting a ten year old might lick?  And, when decorating cookies at 8:30 pm at night, what parent wants to guess wrong only to have her bottom out later.  And, this is truly the first or second time we've done this since diagnosis, so like everything we just need to learn how to do it with Type 1 in the picture.

"You Can Do This," I tell her.  It is ok to hate diabetes.  I hate it too.  But, we had fun making cookies, and we will get this number down quickly.  And, "You Can Do This."  I see her glance at her bracelet.

A vampire site (Thank you Kerri Sparling for introducing me to the term!)  The needle goes in and she yelps.  Blood oozes.  The famous vampire site that has hit a capillary and is now sending blood dripping down her leg.  I pull it and apply pressure.  And, of course we need to do another.  She starts to get upset.

"You Can Do This," I tell her.  Let's not let this become a big deal.  Let's just get it done and move on with life and not let diabetes ruin the evening.  She calms down, the new site change is done, and we move on.

"A boy at school said to me Oh, I'm high...Oh, I'm stupid...Oh, I can't take a test" Jess tells me.  We have a 504 plan for the first time this year.  If Jess's blood sugar is significantly elevated she defers major exams until it is in the normal range.  It was the right thing to do.  Taking an exam with glucose laced brain cells is not fair, and doesn't allow her to reach her potential.  But, clearly other students have caught on to what is going on.  "That must have been upsetting," I say to her..."How did you handle it?"  Jess tells me she told him that she felt that was bullying and that he should stop.  I am so proud of her..."Jessica!" I proclaim..."Wow...you handled that so well.....You Can Do This!"  She beams with pride.

I wake at 5:30 am to prepare for the day.  We find it is easier to manage Jess's numbers, and to ensure her school days are better if we pack her lunch every day.  We spent hours researching the grams of carbs in the school lunches, but changes are made without notice, serving sizes vary, and to be honest, in a world where french fries count as a vegetable, I am happier just to have her pack.  I hate packing her lunch.  Measuring every blueberry on the food scale.  Trying to balance a small treat with other food that has a low glycemic index so she doesn't spike too quickly.  Making sure I put her post it note with the number of grams her lunch is in her bag.  Checking her supply bag for lows, strips, a new tissue.  It is a lot of work, and some days I'd love to just throw in a lunchable and call it lunch.  I choose not to (this might work for some families) as I have seen in Jessica and Sean the difference high glycemic vs low glycemic foods make in their blood sugars.  Some days I would give anything for a break.

"I Can Do This," I tell myself.

Blood sugars of 85 right when I had planned to go to sleep.  Knowing that this means at least one more night check.  Days with repeated unexplained episodes of hypoglycemia and knowing I'll be up during the night checking.  Complete exhaustion.  This is the life of every Type 1 parent I know.

"I Can Do This," I tell myself.

The hubby comes home from inpatient.  "I admitted a patient in DKA last night," he tells me.  Diagnosed at 12...now in her 30s.  She just decided not to take insulin.  I can see he is upset.  And, I am too.  How do we not worry this will be Jessica?  People telling us "that will never happen to her...she is too smart," doesn't help.  How can we possibly know how she will feel after living with this for 23 years by the time she is 30?  I can not even begin to imagine how sick and tired she will be of it all.  My heart breaks when I imagine the impact it will have on her in middle school, high school, college, and beyond.  Site changes every three days for years and years.  Multiple blood sugar checks a day indefinitely.  Measuring every single stinkin morsel of food...or feeling guilty about it.  The co-morbidity between diabetes and depression is huge.  I hope we are giving her the tools she needs.  I hope she sees that we are a team and always will be.  My husband has told me how alone he has felt living with Type 1, how hard it was that when he was diagnosed he was old enough for it to be his disease alone, and what a lonely world that was.  We have told Jess we will be there if she reaches a point where she can't do it another day and needs a break...no matter how old she is.  We are Team Jessica.

"We Can Do This."  My whole family can do this.  In part, because quite frankly, we really don't have a choice.  But, we CAN choose how we will do this.  And, so far I am pretty darn proud of the way we are choosing to live.  There is no doubt that this hated Type 1 impacts almost every hour of our life.  But, we control it.  We don't let it stop us.  It may get each of us down at different times, but there is always a member of Team Jessica willing to pick that member back up.  And, we are so incredibly blessed to have a big Team Jessica.  Our friends and family who "get it."  For every child that says something mean or rude to Jess, there are so many more who support her.  For every grown up that says something insensitive, or fails to recognize how much work this is, and the impact it has on our lives, there are those that fill us with kindness and compassion.  Our close friends, and members of the Type 1 diabetes community that we have yet to get to know well...they sustain us.  And, we are showing Jess that she is not alone...it does take a village.  And, most importantly I hope she sees that there is no doubt that she "CAN DO THIS!"

The Race

I'm running my first race tomorrow.  It is just a 5K, but next is half of a half marathon (a little more than a 10K) and after that...well...who knows.

I started out doing it for Jessica.  In my profession I get to see a lot of healthy and not so healthy people.  If you take bad luck out of the picture, so much of what I see has to do with how people eat and whether or not they choose to exercise.

Like all T1 parents, I will do anything in my power to help Jessica live a long and healthy life.

So, I decided to set an example and when I turned 40 I bought a new pair of running shoes and hit the trails.  I wanted her to see that I felt it was important.  And, I have tried to bring her along too.  We have run together some, and she seems to enjoy it.  She eagerly entered the race with me tomorrow.  But, then at soccer this week she told me she actually really doesn't want to miss her soccer game to run the race.  And, of course I won't force her.

I almost cancelled entirely.  And, then I realized that somewhere along the road of trying to be a good example for Jess, I have fallen in love with running.

It is the only time I get totally to myself.  Well, of course I bring the dog...after all if I weren't multi-tasking by running the dog, then I'd be taking time completely to myself and then the mommy guilt would kick in!

I run through the woods, listening to the stream and the birds, and my steady breathing.  I feel alive, healthy, and at peace.  It has been amazing to test my old 40 year old s/p twin pregnancy body and see what it can do.  And, it has amazed me.

And, I've realized that just as I so often tell my patients that they as caretakers need to take care of themselves, this is what running has become to me.  A reminder that amongst all the focus on my daughter and husband's health, my health is important too and should not be neglected.

It feels odd to be going to a race tomorrow that is not a Race for A Cure or a JDRF walk.  But, it also feels guiltily wonderful to be running tomorrow to support another valuable cause.  For almost three years I have lived and breathed diabetes every waking and sleeping moment.  And, I will continue to do so and continue to support and help my husband and daughter any possible way I can.  I will continue to live in awe of all they must do and wish with all my heart that they didn't have to.

But tomorrow morning for a brief time it will be my time.

I don't know how I'll do tomorrow.  As luck would have it I'm on call tonight.  And, there's the stupid cold I have had all week.  

But, if my daughter can be the leading scorer on her soccer team with a blood sugar in the 300's then surely I can do this one small thing.

Small Victories

First Halloween with T1- even broken pancreases can't stop the Halloween fun of carving pumpkins with Grandpa!

"Halloween is my FAVORITE holiday," her sleepy voice tells me as I tuck her in tonight.  "I just can't wait...I love Halloween!"  I smile with complete joy.  Just a little under three years ago I was filled with dread while also trying to deal with all the emotions that surround a new Type 1 diagnosis.  There is no good month to be diagnosed with Type 1, but especially for a small child October seemed particularly cruel.  Jess had already picked out her costume.  She was dreaming of candy, and ready for Halloween.

And, then her pancreas went on strike.  And, I was left wondering...how do I deal with a holiday whose main focus is candy? Maybe if we had started Jess's diabetes healthcare with the team we have now I would have felt more supported.  Her current healthcare provider would have insisted she eat the candy like the other kids, rather than instead giving us information on a program at a local department store where you can turn in all your candy for a small gift card.  I am by no means disregarding this program, but what small child wants to take her bag of candy and surrender it for a gift card that doesn't even buy one real toy?  I remember thinking "how am I going to pull this off?"

Panic breads creativity.

And, the Halloween Fairy appeared.  Both Jessica and Courtney saved five pieces of candy and then decorated a bag to leave the rest of the candy for the Halloween Fairy.  In the middle of the night while they slept soundly, the Halloween Fairy appeared leaving her magical pathway of glitter as she traveled across their bedroom.  Taking the bags of candy, she left behind presents decorated in black and orange paper and lots of Halloween stickers.

I woke to the kids screaming with glee.  "Mom---you were right---there is a Halloween Fairy!"  They loved the glitter all over their floor and were thrilled by the presents.

Of course there were questions.  Where had this fairy been before?  Well, the Halloween Fairy only visits Type 1 children and their siblings, I explained.  

Suddenly, having Type 1 diabetes was a pretty special thing.