I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Saturday, May 17, 2014

Running With Diabetes

When I turned 40 a good friend introduced me to running.  In a former life I had been a soccer player, and I can't say I was particularly interested in running.  I thrived on competition and teamwork, and running seemed boring and pointless.  But, I trusted this friend and so I gave it a go. And, I was hooked.  I loved what running gave me.  A time to reflect...to challenge my body...to feel healthy and strong.  I am not the fasted runner, nor have I any major claim to fame.  I've done half of a half marathon with the friend that introduced me to running, and a handful of 5Ks.  My running has been derailed by work, my daughter's brain surgery, and my own lack of motivation.  Yet, I have always returned.

Recently, Jessica has joined me.  I love having her as a running partner.  I love having the chance to introduce her to something that I have grown to love.  I love that unlike team sports, she can easily run throughout all life stages.  It gives us a time to be alone, to talk, to be healthy together.

Some runs diabetes is only in the background.  The bag of skittles clutched in my hand is the only reminder that it is there.  As our distance has increased I now bring her Dexcom along with the bag of skittles.  Sometimes she has a hard time telling when she is low when her heart is already pounding from exercise.

I'm learning to be able to tell her blood sugars by her run.  The slightly slower pace when she is high.  The days her blood sugar is perfectly in goal and she zooms past me.  I'm learning what works and what doesn't work.

Today what I tried, didn't work.  She started at 146 with a flat arrow (steady blood sugar.)  I gave her skittles and chocolate milk and we headed out.  Half a mile in and she was 86 and an arrow down.  We slowed to a walk and I gave her more skittles.  We ran again and a mile later she was dragging.  The dex showed 68 and flat.  More skittles.  More running and the dex stayed in the 60's.  We both figured it was just lagging with the amount of skittles consumed.  I could see the disgust with diabetes on her face.  "Remember Sebastien Sasseville and Korey Hood," I told her.  "Is Sebastien still running?" she asked.  I told her he was in fact still running...I mean it takes awhile to run across Canada from coast to coast.  I reminded her that Korey had run the Boston Marathon with ridiculously high blood sugars and ketones.  "Diabetes can't stop you," I told her.  We made it back home...it was not a great run.  She was upset by the 2.86 miles.  We normally do at least 3.12 (the kid likes to say she ran a 5K.)  The Dex was beeping and alarming the whole way home.  We walked in the door and the fingerstick showed a blood sugar of 71.

I don't know what it is like to run with a blood sugar in the 60s.  I sometimes have off days where it just doesn't feel good.  Somehow, I doubt these off days compare to what it feels like to run in the 60's or 300's or more.

I told Jess I was proud of her.  She is strong and brave.  Tomorrow we'll try a temp basal an hour or two ahead.  I reassured her I always have more tricks we can try.  And, if we run out of ideas we have people to ask.

It's a new experience, this running with diabetes.  But, we're up for the challenge.

Thursday, May 8, 2014

Twenty-Five Years

This weekend marks twenty-five years that my husband has lived with Type 1 diabetes.  I have known him for nineteen of those years.  I have witnessed firsthand the daily struggles, the highs, the lows, the WORK that is involved in living with this disease.  I've seen the emotional burden.  I have watched him cry when his own daughter was diagnosed at the young age of seven.  I saw the misplaced guilt that consumed him; the absolute devastation that he knew what she would live with.

But, I have also witnessed his strength, perseverance...his spirit.  I have watched him graduate from medical and graduate school without one accommodation for his diabetes.  I have watched him work inhumane hours during residency...saving patients' lives all while his blood sugar was in the 200's or 300's at times.  I have seen him sit and sweat while he quickly treats a low in order to get back to work. I have seen the syringes, the thousands of strips, the pump and dexcom changes.  I have witnessed bravery and triumph.  I have watched him travel desolate places.  I have seen him become the most amazing father my children could ever have asked for.  I have watched him become a hero to my Type 1 daughter.  I have seen him LIVE with Type 1.

Lately, I have seen his hope.  For many years he was hopeless.  He had been promised a cure in "5-10 years" at diagnosis.  We've all been promised that.  And, it did not come.  A horrible feeling to realize that there is no end in site.  This disease is so consuming.  He continued to live and thrive, but I remember my frustration when my daughter was diagnosed and I looked so desperately for that cure.  I combed the research and would excitedly share possibilities with him.  He did not share my excitement.  He had already lived through the disappointed and acceptance that a cure was not here.

But, lately his hope is back.  He once again believes there may be a cure.  But, more importantly, he believes for the first time that there will be a radical change in his life.  I will never forget his excitement and absolute idolization of Ed Damiano and his bionic pancreas.  It has given him motivation, and the belief that one day soon things will be better, not just for him but for Jessica and so many others too.

He is working harder then I have ever seen before.  Eating healthy, exercising, losing weight.  He excitedly texted me earlier this week...his A1c was 6.8---under 7 for the first time in awhile.  I could hear the pride.  He was so excited.  I watched him open the envelope from his endo with his lab results.  "Here are the results of your recent tests.  The statin has worked very nicely.  Please stay on it."  SERIOUSLY????  That is it????  No mention of his A1c which had been over 7 and is now 6.8...no acknowledgment of any of the work that had gone into these numbers.  I was disgusted.  Furious.  He was not.  He spent years looking to his health care provider for support.  Recently he realized it would never be found there.  But, he has found it.  In the form of Children With Diabetes and the DOC.  He feels connected for the first time...he no longer feels alone.  I watch his happiness every time he talks to the adults with T1 that he has met.  They are his support.  They are what he was always looking for.

This weekend marks a twenty-five year journey.  The battle of one man against a ruthless disease.  It marks a victory.  He stands strong with no complications and living an incredibly full and happy life.  He symbolizes hope....what I hope for my T1D daughter, and all those living with T1D.  Some of it is luck...I have seen those who have worked so hard still develop complications; some of it is being born in the right time and place...so many still die without access to insulin even today; but a huge part of it is  work.  His work.  And, that is what we will celebrate this weekend.  Twenty-five years of hard work is worth a celebration.