Welcome

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.

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.


Tuesday, December 31, 2013

Purging

I'm ready to purge 2013.  Sure, there were great times; we have so much to be thankful for.  But, to be honest overall you could say it sucked.  Sucked is relative, of course.  We end it happy and healthy, and for that I am incredibly thankful.  We hands down have the most amazing friends and family, and that was more evident then ever this year.

Courtney's brain surgery was hands down the worst thing I have ever been through.  I barely made it through.  My family, and dear, dear friends carried me through...basically pulling me to the other side.  I know it was the lack of control.  I feel I can control diabetes, even though that obviously isn't true all the time.  And, even though I put Jess to bed every night and there is some fear of what will happen, it isn't on the same level as watching Courtney fall asleep to anesthesia and then leaving her.  Leaving her to have her brain cut open and part of it removed, to have her lose a vertebrae forever.  Because of my profession, knowing every single horrific complication that can occur, and having nightmares about it for weeks before the surgery.  My poor dog Lilly put up with many 2 am visits where I held her and simply cried and purged my terrifying fear.  I still get tears now as I write thinking about how horrible those nights were.  Yet at the same time, I have never felt so supported.  And not just by my poor dog Lilly.  My girlfriends were amazing.  I am extremely selective with close friends.  I just don't have the need or patience for anything but the real thing.  They saved me.  Brownies, daily texts, phone calls during which I must have driven them insane telling them my fears over and over again.  They were there in the waiting room when I came out after leaving Courtney behind.  One flew in and out just for the surgery.  Being there is not easy.  It is not fun to be friends with someone who is facing something so terrible.  I know...I've been friends with someone through the worst.  But, yet they were there.  Both my and Sean's family were there.  We took the worst out on them.  And, yet they were just there.  Jess was there.  She dealt so gracefully with the shift of our attention.  Seeing her those brief times while I stayed with Courtney in the hospital were a saving grace.  She was my ray of sunshine.  Before we left, our work family sent us with so many things we never would have remembered.  I worked up to and including the day we left for the surgery.  I never would have remembered to pack food, drinks, books, games for Jess and Court.  Afterwards, we were bombarded with the giving spirit of so many.  Meals arrived.  Someone payed our Believe in Tomorrow bill.  Facebook messages during and after which meant so much.  I was simply humbly amazed by humanity.  People can say there is too much evil in the world, but there is also so much good.  I will never, ever forget all that people did for us this year.

And, then I was diagnosed with celiac.  After the diabetes and brain surgery I completely blew it off as "nothing."  I didn't mourn it, didn't process it.  I mean, after the hell we had lived through this was a cakewalk.  Except, it turned out it wasn't.  As a Landshark and Taco Bell loving girl this was a lot to adjust to.  It turned out it was way harder than I thought.  Back to reading every label, but looking for more than just the carbs.  Social get togethers became stressful.  Guilt---this was yet one more thing for our friends to have to deal with.  Aren't we fun to have over?  Two Type 1's and a celiac.  Oh joy!  And, unlike the brain surgery this has no end.  I will never again taste the delicious rolls at one of my favorite restaurants, a great beer, or some of my favorite desserts.

And, so I am purging this year.

I spent the past couple of days that I had off work gutting my closet, my bathroom drawers, painting my bathroom.  Bags of trash out.  Bags of clothes for goodwill.  It wasn't until today that I realized what I was doing.  Purging the old.  I'm ready to start new.  I'm ready to get healthy again.  The stress of the brain surgery and the disruption of life while Courtney recovered derailed my 6 mile runs.  Being diagnosed with celiac and then trying every gluten free version of cookies, crackers, candy put on pounds.  I'm ready to purge them too.

So, goodbye 2013.  I am so thankful to end it with both my daughters healthy.  I am so thankful to end it with life filled with amazing friends and family.  I am so thankful to end it having seen so much good in the world.

Tonight I am lucky enough to celebrate and bring in 2014 with friends who have stuck with us since before Jess was diagnosed.  We will purge 2013 together.

Tomorrow is for new beginnings.  And, a beautifully painted bathroom.

Sunday, December 29, 2013

Don't Let Your Guard Down

Lately, we've been in a comfortable diabetes rhythm.  Jess and Sean have been doing great.  We've been at this quite awhile now with Jess.  The emotional burden has lessoned.  We are used to Jess hating diabetes at times.  We are used to the daily impact it has on our life.  It is always there, but at a level that most days is on the back burner.

And, we let our guard down.

Jess was high last night.  Not crazy high, but in the high 200's despite multiple boluses.  I was on call and so my energy was focused on the patients I was caring for.  There was nothing major going on with Jess and so I didn't focus on it.

We all slept in and got up barely in time for the girls to go to brunch with my parents.  I don't even remember what Jess was before she left.  But, it couldn't have been too high or she would have said something and I would have noticed.

After brunch she was in the high 300s.  Not terribly abnormal for Sean or Jess on occasion to run that high after an all you can eat brunch.  Not ideal, but we so rarely do all you can eat buffets that it is not alarming.  We usually correct and move on.

Jess was due for a site change and that was done.

Throughout the day she stayed in the 300's despite repeat boluses.

Then this evening.  Pow.  High 500s.

We should have pulled the site and given a shot.

But, there is a sense of pride.  And pride can sometimes breed stupidity.  You see, she hasn't had a shot since getting the pump over 3 years ago.  Giving a shot has turned into a bigger and bigger deal the longer we have gone without doing it.  Stupid, really.

We bolused one more time.  Thirty minutes later---critical high.  Above 600.  Haven't seen that since diagnosis night.  Small ketones.  Didn't have those diagnosis night.

We realize our mistake and the acuity of the situation.  We pull the site which is kinked- no surprise there.  We have turned into one of those nightmare patients that they present to you before you get your pump.  You know, the ones that demonstrate how things can go so badly so quickly on a pump.  The ones that as they present them to you, you sit there and think "That will never be us.  We would never let something that stupid happen."

I draw up the insulin into a syringe.  I haven't done this for over 3 years.  I am surprised when it feels normal, comfortable, and in some sick way I don't have time to explore, like a long lost friend.

Jess freaks when she sees the needle.  But, we get it done.  I am likewise surprised how comfortable it feels to give her a shot.  As I write, I realize that I gave so many that first year that it must be like riding a bike.

I am surprised by how I feel no guilt.  We screwed up.  And, that is all it has to be.  She's back to the 300s now, and will be back to normal before I go to bed.  I remember when much less than this would lead to me blaming myself and filled with guilt.  I don't know if it is good or bad that I feel none.  Diabetes is a monster.  You can't let your guard down.  But, we are not perfect.  Most days we nail it.  But, we can't do it every day.

And, this will even sound worse.  As the crisis passed I realize I am glad in some small way it happened.  We gave a shot.  We won't hesitate now to do that again.  We corrected a blood sugar in the 600s with ketones with no help but our own.  Jess learned how quickly problems can happen, but how quickly they can also be fixed.

And, we all were reminded that we cannot let our guard down.


Monday, December 23, 2013

I Didn't Know That

Long day of doctors' appointments today for both you and your sister.  Left at 8 am and got home at nearly 7 pm.  I'm tired.  I know you and your sister are too as you both fell asleep on the car ride home.

You were so quiet and nervous on the way down.  You were so sure that your HgbA1c was going to be "terrible."  It didn't matter what I said...you weren't listening.  You wouldn't eat breakfast.  You have this theory that if your A1c is taken when your blood sugar is in goal then it is better.  If your blood sugar is high when the A1c is checked, you swear it is higher.  You say you have been collecting data, and you are sure this is a proven fact.  I have tried to point out that the differences have been on the order of 0.2 which is not likely to be statistically significant, but even when I think I am explaining this in 11 year old terms, you nod and tell me you just know you are right.  Hence, no breakfast today.

I watch you get weighed and measured, and your blood pressure taken.  So normal to you now that you know the routine.  You prick your finger and give the blood for the A1c.  We are then taken to the room, and I see you glance back at the machine, hoping it is done and you can see the number.

You sit waiting for your diabetes provider.  So quiet.  So nervous.  You almost always bolus off the dexcom, so there are only two sugars a lot of days in your meter.  The 90 day average based on those is high, and thus you are sure the A1c will be too.  It is so new to me to see you check your 90 day average and process what it means.

Your diabetes provider walks in smiling.  She asks you if you know what a perfect A1c is for someone your age.  She says she hates to use the word perfect, but that is what it is.  You shake your head and she tells you it is 7.  And, she hands you the paper with your A1c written on it.  It is 7.  I see the relief wash over your face.  You shine a humongous smile.  This one is yours.  I have done the nights, but that is it.  She knows this, and she praises you so much I honestly get tears in my eyes.  I am so immensely proud.

I try to sit back and let the visit be between you and her.  I learned so much.

There is a boy in your classes.  He calls diabetes diaBUTese and tells everyone it is an infection of the butt.  I didn't know that.  Your amazing diabetes provider tells you he is obviously insecure about something, and goes on to make you feel better about it then I ever could.

You try to sit with your chin in your hand all the time.  This way when you treat your lows no one can see.  I didn't know that either.

You sometimes ignore your dex alarm in class and act like you don't know what it is either.  Then you pretend to reach into your bag to get something out, while you discretely look at it and turn it off.  I didn't know that.

You still feel some of the teachers don't understand your 504, and you are ignoring it at times.  Taking tests when high as you hate feeling the teachers are annoyed with you.  That, I knew.

You get low most days after gym.  I didn't know that.  And, that speaks to the control I have relinquished.  Your provider is proud of that.  She tells you that because you are doing all of this on your own and doing it so well, it will make it easier for me to tell you that you can go out with your friends alone, or spend the night.  She is right.

I watch as you and she come up with a plan for what to do about gym.  You discuss it as two adults, deciding on doing a temp basal.  I watch as she asks you if you need her to show you as a refresher how to do it.  "I got it," you reply.  "I do it all the time."

You are right, kid.  You got this.  Four years in and you have grown so much it simply blows my mind. I hate that you have had to.  I would give anything to take it from you.  But, I also know that it is you.  You are who you are, and who you will become, because of this.

At the end of the visit, your provider asks if you would consider being a mentor.  You smile..."sure."  She also takes you to see the endocrinologist (she is the CDE & nurse practitioner).  She brags to him about your A1c and your self management.  You are so proud.  I wish I could bottle up all of those feelings for you and give them to you when you come home beat up from a school full of kids and adults that just don't understand.

You are my mentor.  I hope you are your dad's.  I don't know that I would be able to do what you do.  I don't think I could do it as well.  I thought I knew how amazing you were, but...I didn't actually know that either.

Thursday, December 12, 2013

Pausing to Reflect

We just finished your site change.  There was no screaming, crying, begging, or negotiating.  And, it suddenly occurred to me that I actually couldn't remember the last time there was.  We didn't use EMLA numbing cream.  It didn't take more than 30 seconds.  As I suddenly realized this, it made me pause with wonder at how far you have come.

I vaguely remember when you were first diagnosed.  You had just turned seven.  Your fingers were so tiny.  You were so little.  My heart was broken, and it would crack further every time we checked your blood sugar.  You would scream and cry and we would have to hold you down.  And the insulin shots.  It still causes my heart to twinge to think about the first of those.  We would literally have to straddle you and we would be crying with you as we gave them.  I still hate those days.

I will never forget the pride that I felt less than a year later when you gave yourself your first insulin shot.  How, so quickly, you took over checking your own blood sugars and giving your own shots.  I remember at the time it seemed like eternity.  That first year each day dragged on so.

And, then we started the pump.  And the Dexcom.  The screaming, crying, begging, and negotiating began again.  I so hurt for you.  Everything in diabetes looks and sounds so scary, even to adults.  Needles, the big click as the site goes in, the worse click upon insertion of a dexcom.  Terrible things done to your body over and over again, and there is no end.  So many fingersticks a day.

Today you accidentally held out your pinky to me when I went to hold your hand.  We both realized, and you joked that you hope when you get married you don't hold out your pinky when they ask for your hand. You can joke about it now.

I hear you singing as I write this.  The site change a mere pause in your evening.  It used to take up your entire evening.

Lately you are the one who reminds me that it is time for a site change.  You used to stay quiet, hoping we would forget.

You focus on other things now...you are so aware of your averages.  You tell me with disgust that you don't think this A1c will be "good."  I remind you there is no "good" or "bad."  It is simply a tool to tell us which direction we need to go.  You nod, but I know you aren't really listening.  You are becoming in charge of your diabetes.  And, you are deciding how you will view things like averages and A1c's.  I only hope that we have done our job and helped you to be as well adjusted as you can be.

I wish I could go back and tell myself that terrible diagnosis day that things ARE GOING TO BE OK. I can't believe how far we have come in four "short" but forever years.  You simply amaze me.