Because Growing up is Hard Enough

This year, our second daughter decided to move into an apartment in her college town and take some summer courses.  In the short 2 months she has been away, she has definitely applied the life skill of problem solving.  The last few times she has called me, she is the epitome of Murphy's Law.  I have renamed it Taya's Law in my mind.  She learned how to change a light bulb of  light on a 10 foot ceiling without a ladder.  (Let's hope she doesn't do that again!)  She learned how to find financial aid when FAFSA fails and that you have to work hard and long to make money.  She learned how and where to get her oil changed so they don't try to convince her that her car will fall apart tomorrow if she doesn't fix this or that.   She learned that fun stuff costs money and so does locking yourself out of your apartment.  She learned you can't win a wrestling match with road dividers and she is on a first name basis with her building manager after discovering a wasp's nest in one of the bedrooms. (Very gross!)  One recent text simply stated, "I hate doing adult things."

All of the above incidents could have happened to anyone, well, maybe not anyone in 8 short weeks

Taking a break from anatomy
to do blood sugar check/
insulin bolus

but these incidents aren't exclusive to Type 1 Diabetes.  To top all of this off, she is learning to manage her own healthcare.  She has started seeing an endocrinologist, a new dietician and a new diabetes educator.  She is learning to navigate these relationships so that she can find balance between the life she wants to live as a normal college student and the life she needs to live as a young person with a chronic illness.  I am so proud of how she is learning to advocate for herself to find that balance.  To that end, she made the decision to take a vacation from her insulin pump. This, I am told, is a pretty typical occurrence.  She is just sick of being "plugged in" and wants to try something different.  Tylie made the same choice at age 18.  The difference was, Tylie was at home working with our own familiar pharmacy and healthcare providers.  Taya's first frustration came when her endocrinologist's PA, a young person herself,  was very supportive and encouraging.  The diabetes educator, an older woman, was not.  Taya stuck to her guns and chose to stick to the plan she worked out with her PA, which includes a shot of an ultra long acting insulin daily as well as 3-7 shots of short acting insulin as needed to cover food or treat highs.  Let that sink in...up to possibly 10 shots in a day not including finger sticks!  On the pump, she would still do finger sticks but only change her set (the part that delivers the insulin to her body) every 3 days.  Essentially she is exchanging roughly 2-3 "shots" a week for potentially 70 or more!

Next up, finding a pharmacy.  Since she was unfamiliar with Grand Forks pharmacies, her physician sent the scripts to a well known chain.  I gave her the information she would need for insurance and all should have gone just fine.  At 6 pm, the phone rings, followed by the question, "How come everytime I try to do adult things something goes wrong?"  They would not fill her prescriptions because they said her insurance was denying it.  After a frantic call to me, who called our insurance company, it seems the pharmacy was not entering her information correctly.  After another couple hours of run around- I sent out an SOS to people living in Grand Forks who finally hooked us up with a pharmacy near her that worked with her on a much more personal level.  At 19, picking up cold medication used to stress me out.  I can't imagine how frustrated she was waiting to get the medicine that is required to save her life while all her friends were off having a relaxing summer afternoon!

Blood sugar check before the Bison game. 

Tylie, too has had numerous challenges in her quest to fit diabetes things in with 21 year old things. Her path to diabetes independence was a bit less bumpy as she had the luxury of a more gradual transition.  An unexpected blessing for the girls is that for the first time since Taya was diagnosed, they do not have medical personnel comparing them to each other as they now see different teams.  But, we can't forget TJ as he transitions to middle school and hormones and balancing friends, sports, and his desire for independence.    In a world that is fast moving and ever changing, there is one certainty for these kids of mine--diabetes isn't something they can grow out of, ignore, or pop a pill to cure.  They need insulin and sometimes juice boxes for life support.

My desk at work showing a week
of blood sugar chaos for the middle
school boy.  

I encourage you to help us keep advocating for a cure by reaching out to your government officials and ask them to sign a letter of support for the Special Diabetes Program.  This program provides $150 million annually for the National Institute of Health to continue vital research on Type 1 Diabetes.  Finally, if you feel so moved, help us reach our family goal for the JDRF One Walk next weekend and donate to our team- T1-cubed and of course, we'd love for you to walk with us.

Changes

Four years ago today, Troy and I were driving to Minneapolis for a weekend getaway to take in some Twins baseball.  On this particular drive, somewhere between Fergus Falls and Alexandria, I got a text from a friend I had lost touch with in recent years.  Her words instantly took my breath away and brought tears to my eyes.  "Addison was just dx'd with diabetes."  You see, we had become rather insulated in our little world.  We managed day to day.  We felt we were living successfully with diabetes.  We had ups and downs both in blood sugars and emotions but we were surviving.  We had become complacent and overly accepting of this disease in our lives.  Her text made me realize we shouldn't have to settle for this and no one else should have to live with it.

Now, four years later, we are in a different place.  We have become more active as a family in seeking a cure and promoting awareness.  I am no longer complacent or willing to accept that they will live with this disease their entire lives.  However, this has been a tough summer for me.  There are a lot of changes going on in our family.  First of all, two girls will be going off to college in two different places.  Taya will be venturing off to Duluth to tackle a biology major and Tylie is moving to Fargo to study History and English.  Just reading that you can see the differences in their personalities, yet it is hard for me to imagine one without the other. Tylie may be the oldest chronologically, but Taya has always been the one pushing her out of her comfort zone.   If Taya hadn't decided learning to ride a bike was a good thing, I am fairly certain Tylie would still be using training wheels.  Taya does things by the rules with order and logic and Tylie likes to dream and discover mysteries as they come along in her own time. They give each other balance.  What I have been learning in recent weeks is that they also give me balance.

Sending kids off to college is, in itself, an emotional event.  Now imagine those kids having diabetes. In addition to making sure they have bed sheets and coffee pots, my list includes finding a pharmacy and making sure glucagon is up to date.  In truth, I am terrified.  I have always been their back-up pancreas.  Even as they have learned to take care of themselves and I am more hands off, I fill the prescriptions, I follow their care, I see them daily.  I am up in the middle of the night when I hear the fridge open.  I am there when they are throwing up or have screaming headaches due to blood sugars that won't settle where they belong.  As they begin to make the natural separation from us and learn to live independently, I find myself anxious and unsure of what my new role is in both their real life and their diabetes life.  Endless questions run through my head and when I say them aloud, I can see their annoyance.  Does your roommate know what you are like when your blood sugar is off?  Does she know what to do if you can't do it yourself?  What if you get low in the middle of night?  What if you get sick?  Will you remember to check for keytones even if you don't think you have them?  I have managed to keep some thoughts in my head.  Instead of asking if there is a plan for where to keep pump supplies or syringes, I say out loud, "Do you need a microwave?" while quietly stashing AAA batteries and fruit snacks into the Target cart.  Much like four years ago, when I got that text from my friend, I realize yet again, we have become insulated.  I forgot to consider that there will be a time that they need to care for this disease more on their own, without me as immediate back-up.   They have to learn to manage it and own it in a way that works for them. I know we have raised them well.  I know they are independent and strong and resourceful and I am so proud of the women they have become. Frankly, I'm even a bit jealous of this new adventure they are about to undertake.  But, I know that diabetes does not play fair and that...well, that makes me angry.

Four years from now, we will again be in a different place.  The girls will either be finished up with college or working toward post graduate degrees.  TJ will be starting high school.  I want things to be different then.  I want them to move into homes without considering where to put all the medical supplies.  I want them to have families without fear of their health.  I want Addison and TJ to go college without being encumbered by a machine that doses medicine so food nutrients can actually fuel them.  Of course, above all, I want them to be happy.  Imagine how that would look in a world without Type 1 diabetes.

If you feel inclined to help make this a reality, please visit this link.  It will allow you to donate or join our One Walk team.  We are stronger together!  http://www2.jdrf.org/goto/T1cubed

This is Diabetes

Typically, I don't get too worked up or defensive about diabetes comments.  I've heard all sorts of things about causes and cures.  Yesterday, the CrossFit CEO chose to put ignorant and insensitive post on the company's social media accounts.

 Today, if you follow DOC social media at all, there has been a tremendous amount of backlash, largely from the T1D community but also from Type 2 advocates and rightly so.  The general public does not know the difference between Type 1 and Type 2 which negates their claim that the Type 1 community should have known they meant Type 2 in their parody.   The assumption made by CrossFit that we all "know" which type they are talking about is unfair for many reasons.  It promotes a stereotype that does a disservice to all types of diabetes.  It is hurtful to those of us that watch our loved ones battle this disease every day and especially to those that have lost people to the disease.  The thing about diabetes is that, no matter what type you have, it is never exactly the same for anyone.  This is why we get defensive.   The company had many opportunities throughout the day to clarify and to apologize and to truly educate.  Sadly, they missed their opportunity and that is really what has gotten under my skin.    Let me show you diabetes.
 

These three kids live a healthy, active life.  Two of them are going off to college, which opens up a whole new world of worries for this mom.  They have diabetes.  They didn't choose it, they didn't get it from drinking soda, eating fruit snacks, or too many donuts. It can't be cured by diet, exercise, cinnamon, or some magic potion beverage.  In fact, you can see a Powerade in this picture.  That little boy had a blood sugar of 60 when we got to the restaurant.  It was the unplanned effect of too much time swimming.  That sugar saved his life.  It wasn't the first time.  This is diabetes.

 

These lovely ladies are wearing pancreas necklaces.  Why?  Because they spent their days being TJ's pancreas.  When every other kids was out at recess, they were reviewing his numbers and trying to figure out why today he was high when yesterday he was low at the same time with the same activity and the same snack.  Or helping him to change his pump set because it fell out during PE. Or counting his carbs after lunch so we could be sure he got the right amount of insulin.  This is diabetes.

That little girl in the middle was diagnosed with diabetes at age 4, like my girls.  The other two have been friends since they were 8 years old and first went to diabetes camp.  They teach each other, learn from each other, and commiserate together, even when they are apart.  They truly are "blood sisters."  Somewhere today I read a comment that stated,  "T1 people should relax about the CrossFit post."  He understood that "Type 1 diabetics don't choose it, they are just dealt a bad hand. That's no reason to get defensive. "  Well, yes! I'd say they got a bad hand.  But, these girls bluff their way through finger pokes, set changes, shots, highs and lows and still manage to smile through tears.  This is diabetes.

These pictures represent some of the things a person with diabetes needs to live a healthy life. Granted, we have an obscene amount in our house with 4 of them but this is diabetes.

The big guy in this picture loves sports.  He walks regularly, he tries to eat healthy despite a crazy busy schedule of teaching and coaching.  He hates taking medication of any kind, yet he has to every single day.  These medications that work to keep his foreign kidney functioning, take a toll on the rest of him.  His pancreas can't keep up.  He didn't ask for it, he didn't choose it but he has Type 2.  Now, in addition to his daily dose of pills, he checks his blood sugar and he takes insulin shots.  This is diabetes.

The kids in this picture took their stories to Washington DC as part of JDRF Children's Congress.  A new group will be going in just a few short weeks.  I can tell you more stories about people I personally know: a little girl whose journey with pancreatitis lead her to diabetes, a student in my class whose flu diagnosis turned out to be Type 1, and list goes on.   This is diabetes.



  Here are a couple of links that summarize the differences and the causes much better than I can:  http://goo.gl/On5Szp, http://jdrf.org/life-with-t1d/frequently-asked-questions/   CrossFit, you got it very wrong.  Diabetes of any type is hard work.  People living healthy lives despite it deserve your respect--not shame.