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.

Thursday, October 9, 2014

5 Years

5 Years
Five Years.  Five ridiculously long years that at the same time have gone by in the blink of an eye.  I remember that night...five years ago.  The night our world shattered.  I remember holding you in the emergency room while your sweet little body was violated in ways that would become your normal.  I remember the absolute terror I felt thinking about your future.  I remember the black that followed.  The guilt I felt over that black.  We had just had dear friends loose their precious little boy forever to cancer, you see.  So, what possible right did I have to experience such absolute devastation over this?  I remember holding you down while you screamed for those first shots.  You have to know without doubt that your dad and I tried absolutely everything we could think of to avoid having to hold you down.  But we, above all else, had to keep you alive.  And, when games and bribery didn't work, we had to hold your little body down even though it killed us.  I remember the day you stopped screaming.  The day you went back to school, less than a week after diagnosis, and read a book to your class about diabetes.  I remember the note you wrote me two days after you were diagnosed:" I'm really glad your my mommy.  When can we go ice skating again?  I bet I'll be really good."  You saved me.  You were ok long before I was.  And, your strength gave me strength.  What resilience children have.  You became my hero.

Watching your child hurt, and being powerless to protect them.  This is devastating.  As your mom, my job was to protect you.  And, I couldn't.  Like so many other moms I know I have looked back.  I know there is no point.  I know rationally it is not my fault.  But, that doesn't stop the thoughts...I know now I had undiagnosed celiac during my pregnancy with you...did this contribute?  I put you in daycare when you were six months old...was this where you caught a virus that could have caused it?  And, now...new theories that weren't around twelve years ago...I gave you gluten in your first year of life...this could have caused it.  I know these thoughts are futile.  Ridiculous.  Pointless.  They rarely enter my conscious now.  But, tucked away, they are still there.  And, I'm sorry.  I am so sorry that I could not protect you.

Five years.  Why did this anniversary bother me more than any other since the first?  I was so relieved to go to bed that night.  So glad the day was done.

Maybe it is because it has been five years and there is still no end in sight.  Five years ago, I was still naive enough to believe a cure was coming soon.  I still have hope it will come, but I now know that "five or ten years" is a joke in the diabetes community.  They've been promised a cure in "five to ten years" for decades.  Maybe it is because now that you have had diabetes five years, I feel this time bomb ticking louder....complications....more than anything else time allows complications.  You will have had diabetes ten years by the time you are seventeen.  I panic when I even think about that.  I know that luck has so much to do with developing complications.  I have seen people who have worked so hard still get them.  You will have had diabetes twenty years when you are only twenty-seven.  Twenty-seven.  I was newly married, hadn't even finished my medical training.  And, by that time you will have had it twenty long years.  And, perhaps the scarier part is that the days that I have any control over the one thing that could prevent or delay those complications is marching closer.  You will likely leave my house in six years.  Already, I am losing control over helping you to manage your blood sugars.  And, I should be.  As much as I wish it wasn't, this is yours.  And, to succeed at all you must own it.  Gone are the days when I could feed you your precisely measured meals and have the luxury of you wearing the dexcom 24/7.  These days are about compromise, and fighting the effects of hormones.  They are about you becoming the young adult that you will be.  And, you will be an amazing one.

Five years.  Five years of sleepless nights.  Guilt for feeling anger as yet another night is interrupted by beeping machines that intrude into much needed slumber.  Guilt for having days that I am just tired of it all.  And, what right do I have when you must live with it forever?  Five years of explaining to people who don't get it.  Five years of hearing upsetting comments that aren't meant to be.  Five years of refraining from screaming at yet another person who stares at your pump or dexcom, or asks "what is that thing on your arm?"  And, yet five years is just a drop in the bucket compared to the journey you must take.

I hate it.  I wish I could take it for you.  It is not fair.  You did nothing to deserve this.

But, you are going to be ok.  And, because of that I, too, am going to be ok.

For every single negative that diabetes has brought, there have been so many absolutely amazing positives.  It has changed you.  You are the person you are because of it.  Your strength astounds me.  Your empathy amazes me.  It has connected us to a community that we otherwise would never have met.  A community that envelops us and supports us.  A community filled with super-hero children with type 1, and their un-sung hero siblings.  A community of adults with Type 1 that show me that you will be ok.  Yes, you may struggle.  Yes, you may get complications.  But, you will have support.  And, that support will carry you.  You have friends in Texas, Wisconsin, California...and you support each other.  You would never have them if not for diabetes.  You have saved your dad.  He was alone and because of you he is not alone anymore.  He has found what he was always searching for.  And, because of that, I know he, too, will be ok.  Your journey has led us to work that we never would have done otherwise.  Important work.  Work that needs to be done.

And, better times are near.  The Bionic Pancreas will change your life.  Yes, you will still have to wear so many things attached to your perfect little body.  You will still have the pinholes and skin breakdown.  But, the emotionally exhausting part---the thinking about diabetes every single moment of every single day....it will go away.  An amazing man with an amazing team is developing an amazing little computer that will do this for you.  And, he too is my hero.

And other amazing concepts like encapsulation...they may be a reality.

So, five years.  Five years since diabetes came to live with you.  You've lived well.  You've traveled across the country, hiked mountains, rafted down rivers, rode across deserts on horses.  You've left behind the elementary years and are thriving in middle school.  You are exactly where you are supposed to be despite diabetes.  You have thrived.  Five years, and I couldn't possibly be more proud of you.

Thursday, September 4, 2014

Diabetes on the Back-Burner

I haven't blogged in awhile.  I mean a looonnngg while.  I've been crazy busy.  With Jessica getting older, I have grown hesitant to share too many details of her life.  But, mainly I haven't needed to.  And, that is HUGE.  I started this blog as a place to dump all of the emotions I felt with a newly diagnosed child.  There are still bad days.  There are still many sleepless nights followed by long days at work.  There are failed and painful sites, insulin that goes bad, numbers that won't go down (or up) despite us doing what should work.  There are added in tween additions such as eye rolls.  But, overall everything is ok.  It is ok.  We are ok.  This is our normal.  Diabetes, although still a part of every single day, has been more on the back-burner.

The biggest reason it is ok is our support.  We had another terrific conference at Children With Diabetes in July.  Jessica shared that is is the only week she can truly relax without worrying who sees her site, or who finds out she has diabetes.  She is normal there.  And, normal to a 12 year old is priceless.  But, as opposed to last year where that sense of support ended for her the day we left the conference, this year she is staying in touch with her friends via instagram, facetime, and texting.  It has made a crucial difference.  As a parent, it makes me tear with happiness to know she has this.

Sean has it too.  His entire face lights up when he tells me he has heard from one of his adult with Type 1 friends.  He is connected.  He is supported.  He is not alone.

And, that makes all of the site changes, highs, lows so much better.  Because, we are not alone.

But, I want every patient to feel this way.

I have the huge privilege of teaching medical students.  This week during one of the classes they were to think of ways a diagnosis of Type 1 might affect patients, and what they could do to make that better.  I went from group to group listening to their discussions.  "Well, can they get a pump?  If they get a pump then it will be easy."  "How old are they?  If they are an adult then it is probably easier."  "I would tell them they just need to take their insulin and check their blood sugars and they will be controlled."  I cringed.  And, then I reflected.  They are students.  Most are fortunate to have never experienced a chronic disease.  They have absolutely no idea what it is like to live with one.  How can they possibly imagine?  How can they truly offer support?  And, even as they become physicians, will they gain enough experience to understand?  I take pride in always having been an empathetic medical student and physician.  My heart would bleed for patients. But, until I walked this walk, did I truly understand?  Of course not.  And, do I understand what this experience is like for each unique individual living with Type 1?  I do not.

Those living with Type 1 need each other.  There is so much physicians offer, but there is so much they simply cannot offer.  I have seen firsthand, that the diabetes community can offer that which as a specialty medicine cannot.  We know the truth.  It is not easy with the pump.  It is not easier for adults.  It is not easy for anyone.  It cannot be "controlled"...only managed.

That does not mean as educators, we should not keep trying.  I showed the students blogposts during class.  I watched them as they read the excellent CandyHearts post "She Tried."

Did it make a difference?  I don't know.  I'd like to think it did.

They are amazing students.  They mean well.  They want to help.  They cannot be blamed for their lack of knowledge or experience.

We can do better as educators.  And, I see huge positive changes.  This year the first year students are serving as patient navigators.  They will be paired with a patient and attend all their appointments with them, and truly get to know them.  This can only help.

I wish for every patient what we have found.  An amazing healthcare provider for Jess, and a community for her and Sean that sustains them.  Because, it is this that lessens the burden, and allows at times for diabetes to live on the back-burner.

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.

Sunday, March 30, 2014

Going Tubeless and Other Rambling Musings

After over three years on the One Touch Ping, she decided to try a switch.  We love Animas---their customer service is out of this world.  They rescued us in Colorado when her pump sounded like R2D2 and then died.  That pump went with us everywhere.  It changed her life and mine.  I will forever fondly remember that green One Touch Ping.

But, then she grew up.  She decided that, for now, she doesn't want to display her diabetes.  This doesn't mean she will always feel this way.  And, it is certainly not how we have "raised her."  But, I respect her decision.  And, if I were starting middle school again I think I would probably make the same one.  It is so hard to be different during these tumultuous years.  And, she feels this way only at school.  At JDRF events, out in the public, on vacation...she displays her diabetes proudly.  But, within the walls of the school she feels safer not putting her diabetes on display.

And, thus the battle of the tubing began.  She tried every possible way to hide the pump.  Spibelts showed underneath shirts.  Pump bands did too.  Skinny jeans were popular.  It was a daily fashion battle.

I suggested the Omnipod.  I had originally gotten her a demo three years ago, thinking it would be the least intrusive pump.  She had left the demo on less than ten seconds before ripping it off and throwing it on the soccer field.  But, the new version is smaller, and she is bigger.

At first she was resistant, but long story short, she decided to give it a go for 1 month.  We had our ups and downs.  It's not perfect.  On vacation it let out a high pitched alarm that wouldn't stop in the middle of the packed swimming pool.  She was horrified.  I thought that would be the end of the Omnipod, but she kept wearing it.  Their customer service isn't Animas, and I wasn't impressed with their tech support.  We miss the remote.  And, HAVING to change it every three days (it alarms if you don't) is a bit of a pain.  But, from a medical perspective she seems to have better insulin delivery and way less kinked site problems.  And, she can wear whatever shirt she wants.  And, so she has decided to stay on it.  And, her dad decided to switch too.

We are so lucky.  At a recent JDRF event I sat by the grandmother of a child about Jess's age with Type 1---diagnosed about the same length of time.  Sean got out his Dexcom and I saw her glance.  She had never seen one.  I showed her all the features, told her how much it has helped us.  She called her daughter over (the mom of her T1D granddaughter.)  She, too, had never seen one.  They were amazed by the technology.  Jess and Sean have had it for 4 years.  It is not new technology.  I completely respect people who do not want the technology.  But, to have never been offered it, I find that unacceptable.

It is hard to believe I am now the mom to a T1D middle schooler.  It is so different than elementary school.  Gone is the support from the teachers in terms of reminding her to check before tests.  We have had so much frustration with her 504 that we have all just given up for now.  The school will "allow" her to check and delay tests if she is high, but Jess (at age 11) must do it all on her own.  Even with standardized tests, no one will prompt her to check and defer the test if she is not in goal.  It has been exasperating, but the school won't budge.  It is amazing that within the same district, in elementary school the teachers were so involved, and would allow her to write her blood sugar on the corner of the test so there was transparency.  In middle school they consider it a "medical issue" so the teachers cannot be involved at all.  Jess must decide to check and then pull out the nurse's pass if she is not in goal.  Of course she doesn't do this.  That would draw attention...the very thing she is trying so hard to avoid.  If we hadn't had such an absolutely phenomenal elementary school experience with nurturing teachers and incredible principal it wouldn't be so hard.  But the contrast has been very difficult.

I will forever remember the lecture I went to at CWD where they talked about children processing diabetes.  When adults are diagnosed with a chronic disease they process it and move on.  For children, every new developmental stage means re-processing and figuring out how it fits into their life.  What having diabetes meant to Jessica at age 7 is very different than what it means to her now at age 11.  I remain so proud of her.  She doesn't check or pre-bolus as often as I wish she did.  But her HgbA1c's have been excellent.  She wears her pump and her Dexcom.  I have changed my expectations...taking insulin and wearing the Dexcom to me are non-negotiable.  I don't care how she takes her insulin (she has decided to remain on a pump) and I won't nag her to check her blood sugar as long as she wears the Dexcom.  I think we are still in a good place.

At the recent gala, we heard the heart-wrenching story of a mom whose beautiful daughter was recently diagnosed.  I so remember the raw pain of those days.  We have come so far.  I hate that Jess has this.  But she is living well with it.  Life is so much better than back then.  She has handled this unchosen road with such grace and strength.  And, that is the biggest thing that has made it easier for me.  Like other T1D children she is a hero...they all are.

Tuesday, February 25, 2014

Hiding Different

She hates being different.  I would have been the same way.

Comments that may just be ones of interest, to her feel so intrusive.  I don't blame her.

I will do anything to protect her, to help her, to ease this burden she must carry.

Tonight the omnipod rep came.  This is my idea of a possible solution.  $199 for the "cut the cord" program is a small price to pay for my daughter's happiness.  It can be hidden better than her current pump with its cord and the pump bands to carry it.

She was a good sport.  She's willing to try it.  But, in her eyes I saw the truth.  There is no good solution.  She is tired of it all.  It is but yet just another gadget for her to wear and try.  Another needle insertion.  Another intrusion to her body.

Diabetes can't be hidden.  It is always there.  No matter how much she tries, she is different.

I can't fix this.  I can only walk beside her, "carrying" her when she needs it and cheering her on the rest of the time.

She doesn't believe there will be a cure.  It took only 4 years for her to lose hope.

I believe she will be ok.
I believe there will be a cure.
I believe someday she will stop hiding different and make peace with this monster she must share her body with.
I will never stop trying to ease the burden, trying to find better ways.
I love her endlessly, even more so because she is different.

Wednesday, January 29, 2014

Trying to Make a Difference

Ever since Jess was diagnosed I have been looking for ways to help the T1 community.  I've done the usual fundraising with JDRF, became a JDRF mentor, had the huge honor of becoming faculty for Children With Diabetes (best organization EVER!)  But, I kept looking for ways to use my medical background to make a difference.  A little tricky because I am not an endocrinologist.  I'm a family doctor.  My T1 hubby (also a family physician) and I finally have an idea.  And, we are going for it and turning it into research.  Part of that idea involves looking at many comments from Type 1 diabetes blog posts.

I was unprepared for the emotional onslaught of reading so many comments at once.  I routinely read blog posts and skim the comments.  But, I have never spent hours looking at all of them before.

It is heart wrenching.

There is no chronic, lifelong disease that comes to my mind that is as emotionally and physically challenging as Type 1 diabetes.  These comments detail that with their raw honesty.

My heart aches for my husband, my daughter, and the entire Type 1 community.

And, people don't "get it."  These comments demonstrate the isolation living with this disease can bring.

It is exhausting.  It is constantly there.  The multiple blood sugar checks, the math every time you eat, the highs, the lows, site changes, dexcom changes, injections...

So many emotions....burnout, guilt...the highs...the lows....

I am but a caregiver of a beautiful girl who is becoming a young woman, who happens to have type 1.  I hate that she has this.  I hate that anyone has it.

I see in her how isolating it is.  I hear the intrusive comments fellow classmates make.  I see how she hates being different.  She is so tired of the highs and lows.  And, it has only been a bit over 4 years.

She told me recently that she knows that I love to go on vacation, but that for her the week at Children With Diabetes is her vacation.  She told me it is the only time she can truly relax.  She doesn't have to hide in the classroom checking her blood sugar, hoping no one will see.  She doesn't hide her sites and pump, but wears them proudly like badges of honor.  She is surrounded by literally thousands of people who she knows can keep her safe.  On the one hand, I am so thankful she has this respite, and on the other hand I hope desperately that what she tells me is not true.  I can't bear the thought that she truly relaxes only one week a year.

All I can do is to keep trying.  Keep fundraising.  Keep researching.  Keep helping.  And, keep hoping.   Hoping that someday the elusive cure is found.