Consider Perseverance

Mowing the lawn this morning, my mind got stuck on the word "perseverance."    This thought was triggered first by the mysterious ivy plant that started to grow on the west side of the house this summer.  "How can this thing grow here?  It wasn't here last year.   I didn't plant it. I even tried to pull it up, but it keeps coming back."   However, like the mouse in Give a Mouse a Cookie, my thoughts wandered around before coming back to my starting place.

This stubborn green growth brought me back to Friday.  A 7th grade colleague started the year with a lesson on grit.  Last year, the sixth grade reading teachers did a project with the theme of perseverance.  The team I work with decided to build on it by sharing another book with our students and doing team building activities around that theme.  Friday, our colleague sent us an email to let us know the kids repeatedly talked about perseverance in some form during their opening discussions. This begs the question: Is perseverance something that is taught?

This lead me to consider my aunt, Connie.  She lost her arm in a farm accident in her late teens.  I do not remember her any other way.  I have never had this discussion with her, but I imagine she had to have gone through a tremendous time of anger, self-doubt, and frustration and most likely still experiences those emotions regularly.  However, what I see when I think of her is not struggle but acceptance- this is who I am- and strength-  I'll take your challenge.  The beautiful quilts she makes are a physical representation of her perseverance.  So, I consider: Is perseverance innate?

A gift from my aunt

And, now I'm thinking about my grandma, Norma.  For twelve years, I was the only girl cousin.   I spent many hours in her kitchen hiding from the boys and listening to her sage advice while she canned our beloved "Sauce".   TJ was diagnosed with diabetes two days before she died.  I had actually planned to leave to see her when TJ was admitted into the hospital.   Someone had told her TJ was sick, but not to what extent.  She was always very worried about the girls and diabetes and I didn't want her to have her last days with this burden.  However, I think she knew.  When I finally did make it to see her, she held my hand tight and told me, "Go home and take care of those kiddos."   Even to the last minute she found humor in life when she expressed frustration, "Dying isn't like the cowboy movies when they just shut their eyes and go."  Ever practical, my grandma.  I try to remember that when my emotions get me flying.  I hear her voice in my head, "Slow down, do what needs to be done."  So maybe, perseverance is an expectation, something modeled, something part of your family culture and norms?  

Take my kids for example, I don't remember ever sitting down with them- any of them, diabetes or not- and having a conversation specifically about perseverance.  We encourage them when they are frustrated, we push them to challenge themselves, we acknowledge bad days, we help them find solutions.   They see us fight and struggle in our own lives.  I have seen tears over painful set changes and lost sites.  I have heard angry words over the unfairness and the frustration of battling an invisible enemy; one who certainly does not play fair. This worries me, especially with two away at college.  It will be hard to manage this old villain in a new castle and I hope they make good decisions.  I have watched TJ find a positive in the fact he has to bring his own cake to someone else's birthday party.  ("At least I know I'll like the frosting.") Could perseverance be just a choice;  part of living a life rather than watching it go by? 

After I finished mowing, I looked up the word in the dictionary.  There were many definitions but the key ideas of "determination", "moving forward despite difficulty",  and "effort" jump to the forefront. I then went back around to look at that ivy plant.  Considering, I never planted it, have no idea where it came from, and have even tried to kill it- I think it embodies perseverance.  I took a picture and I will place it in my classroom next to the picture of my family and my aunt's table runner.  Because maybe there are no clear answers to my questions.  Maybe perseverance is all those things at different times.  Louisa May Alcott said, "I am not afraid of storms for I am learning how to sail my ship." Sometimes we need a person to guide us in the decision we were meant to make or to teach us about the path we are meant to follow.  Sometimes perseverance is less of a choice; it is just what we do to keep moving forward when life throws a punch.

My uninvited green friend. 

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.

Time to Kill the Beast

Last week, I was privileged to participate in JDRF Government Day.  This is an event sponsored by JDRF in which advocates from across the country meet in Washington D.C. Over the course of four days we learned about research progress, networked with other T1 D advocates, and met with our respective state's elected officials.

On the first night, we stood and introduced ourselves and spoke of our connection to T1D.  I fought back tears more than once as roughly 200 people told their stories.  We heard of success stories and we heard of losses.  Despite the resilience shown by all present, the message is clear, this story of T1D needs a happy ending and the sooner, the better.

We heard that The Special Diabetes Program (SDP) is making progress.  So much so that Dr. Aaron Kowalski- JDRF's Chief Mission Officer and VP of Research stated, "We have this disease on the run."  As a person living with diabetes himself, he has a reason to give chase.  Since the inception of the SDP in 1997, we have seen the improved technology including better CGM's and the Artificial Pancreas.   However, what about the person who doesn't want to be attached to a device 24/7?  To that end, we saw an Encapsulation device as small as a band-aid that could potentially be implanted under the skin and allow a person to live insulin free for up to two years.  We heard of research projects such as The Environmental Determinants of Diabetes in the Young (TEDDY) that has made incredible strides in determining the causes and progression of T1.  SDP researchers have identified over 40 genes associated with T1D bringing the total to 50 known gene regions- up from only 3 just a few years ago.

While Type 1 and Type 2 are two different animals, SDP research has benefited both in terms of preventing complications.  Continuous Glucose Monitors (CGM) and the artificial pancreas systems can improve glucose control in both populations, thus lowering long term complications such as eye and kidney disease.  SDP is accelerating a treatment which can reverse vision loss in patients with diabetic macular edema.

The SDP not only benefits people with T1D but also those with other autoimmune diseases Collectively, autoimmune diseases affect approximately 5-8% of the population.  Some of the genes associated with T1 are also associated with other autoimmune diseases.  Research and therapies effective for T1 could have a positive effect on other autoimmune diseases.  This little bit of information about autoimmune diseases is particularly personal to me as my immediate family seems to collect them like other people collect stamps!

We spoke with our members of the House and the Senate to bring our stories home, to demonstrate the progress and the need for SDP to continue and to ask them to please vote to extend the SDP, which is set to expire in September 2015.  It is currently attached to the "doc fix" and will potentially be renewed for 2 years.  Our voices were heard as the House overwhelming voted in favor of HR 2. The Senate will continue to discuss their corresponding bill after the Easter break and hopefully bring the bipartisan bill to a quick Yay vote.

While all of this progress is hopeful, the ending to this story cannot come quickly enough.   Yesterday, my husband sent me a text telling me that his blood sugar was 395!  I responded with an inappropriate statement,  thinking to myself he was one day early for an April Fool's joke and a terrible one at that! But, no-- it was no joke.  Troy had a kidney transplant nearly 10 years ago as the result of a different autoimmune disorder (IgA Nephropathy).  Things have been going great-- until this complication.  We had been told that prolonged use of Prednisone and Prograf could lead to diabetes.  For the last few weeks he has been really tired, had blurred vision, and just generally not feeling well.  His regular blood work came back with good news for the kidney but bad news for the pancreas.  After seeing his elevated fasting blood sugar, an A1c was ordered.  The result was a whopping 10.2-- officially the highest in the house- and not the news we wanted to hear!  However, knowing what we know about hypoglycemia, we should have seen this coming.  Today he became the 4th insulin user in our house and our diabetes arsenal has taken over another shelf.   Text messages about missing socks have become text messages about blood sugars and sliding scales.  After day one we both,  especially Troy,  have a renewed respect for what our kids have been handling for years.   If all goes well, his diabetes adventure will be short lived; for our kids, it's a ferris wheel ride they may never get off.

Despite the progress being made and the hope on the horizon, regardless of its type, diabetes is an ugly disease.  It's mean, it's painful, it's aggressive, it's unpredictable, it's deadly and it's time to kill the beast.

 Follow the link to learn more about the SDP and what you can do to help http://advocacy.jdrf.org/our-work/special-diabetes-program/   JDRF is currently sponsoring more than $568 million in scientific research in 17 countries including 50 clinical trials.  This link will tell you other ways you can be involved http://jdrf.org/get-involved/.  For my running friends, JDRF is a charity for this year's Fargo Marathon.  If you plan to run in any of the races, consider joining their team.

Being Aware

Today is World Diabetes Day.  Sixteen years ago, I did not even know there was more than one kind of diabetes.  It was a word I had only heard associated with my 100 year old great-grandma.  Then, life took a turn.

The first time I became really AWARE of  T1 Diabetes was on January 25, 2000 at roughly 9:36 am.  It is one of those moments, frozen in time that you would like to slowly rewind and then replay with a new ending.  At that moment, I was numb with questions and fear of the unknown.  Ironically, I had no idea then how much really was unknown- as evidenced by my question, "When will she outgrow it?"  Within 24 hours, my baby was on an IV and I had added words like beta cells, pancreas, insulin, ketones, carbohydrates, and autoimmune to my daily vocabulary.  We should have gotten college credit for the four days she was in the hospital and the amount of new information we were required to absorb!  After a period of time we settled into the added parenting role of pancreas, and our days took on a new normal.  This first time around, the biggest lesson I learned can be summed up by the quotation, "Be kind, everyone you meet is fighting a hard battle."  Diabetes is sneaky, mean,  and invisible to the naked eye.  Sadly, people say some really stupid things!

The second time I became really AWARE of  T1D, was about 18 months later.  It was July 26, 2001.  It was before noon when I got the message from Troy that he thought something was wrong with Taya.  I was in grad school, and I remember that I was driving back from class and telling him she had to be fine; the doctor had told us having a sibling with T1 only increased the other kids' chances by 4-7%- that translated to slim chance in my mind!   In one of the few incidents I had to concede that my husband was right, we took her for a blood draw and left with a glucose meter and another prescription for insulin.  I was even more numb than the first time around and Troy was furious.  This time, finding a new normal was even more difficult.  Troy had also recently been diagnosed with his own kidney ailment, was coaching two sports, and teaching.   I had just gone back to work full time and was finishing up grad school.   As if that wasn't enough, we had a 1 year old and two girls under the age of 6 who required daily insulin shots and frequent fingerpokes to check blood sugar.  I have said this before, God Bless my dear friend and daycare provider, Traci!   The lesson I learned from this second time around was that it really does take a village.  We have connected with some beautiful souls because of T1 in our lives and we have been blessed with a truly amazing support system.  This doesn't take away all the pain, but it makes the worst days bearable.

The third time I became really AWARE of T1D- as if I needed more reminders- was January 8, 2010 at 7:05 pm.   This was the moment I checked TJ's blood sugar and found it a whopping 536.  Diabetes definitely does not play fair!  If Tessa had not been home with me, I am not sure what I would have done.  With the wisdom of a soon to be 10 year old, she advised me that she would watch TJ a second because I needed to call grandma.  In her mind, grandma fixed everything.  I knew in my heart what was happening, but my head just would not accept it.   Tessa was right, I did need to call grandma.  I needed someone to tell me what to do, because how- HOW- could this be happening again?  Even as I type this,  I can feel the hysteria rising in my throat.  So I called Troy's mom. She said she would go to Taya's hockey game so she wouldn't be alone and that I needed to take TJ to the hospital and she would come up later to get Tessa.  Somewhere in the midst of this, my mood went from numb to really, really angry but two funny things happened that night:  1.) Taya got two penalties in her hockey game.  If you know Taya at all, you know that this is proof the stars were not in our favor that evening.  She HATES the penalty box - her dad can't even pay her with ice cream to get penalties! Her only other experience in the box was when he made her serve his bench minor.    2.) After hearing our family history, the admitting doctor asked me if I had married my cousin!   This still makes me giggle!   The lesson I took away from this go round was you have to find the humor because if you can't laugh, you will always be crying!

The fourth time I became really AWARE of T1D was early August, 2011.  We were driving to Minneapolis and I received a text from Taya's Godmother saying Addison was in the hospital and they were pretty sure it was T1D.  My heart broke.  T1D was now a 'normal' part of our lives, but I surely did not want this for my friend.  That was when I learned the lesson that we should not keep hiding the battle - we needed to live it out loud.  If we minimized it, no one would be aware and no one would fight for a cure or even care.  This is why I have been posting a fact a day about what it is really like to have T1D, this is why I advocate with JDRF, this is why we walk and raise money- because the more people that are AWARE, the greater chance we have for change and ultimately, for a cure!

Haley, Addison, and Taya at camp! 

Taya, TJ and Tylie advocating on the Hill! 

           These kids inspire me each and everyday!