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.

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.

Significance

From the very beginning, I can remember being told "Always remember, it's just a number, it's not good or bad."  Of course, they were referring to the number on the glucose meter- the number that tells us whether the blood sugar is too high, too low, or that magic, Goldilocks 'just right' number. In truth, the number itself has little meaning at all, it is what it symbolizes.  Let me preface this little essay be telling you what is normal for a non-diabetic person.  If you were to check your blood sugar when you woke up- a fasting blood sugar- it should be between 70-90 mg/dL.   A blood sugar reading two hours after eating should be less than 140 mg/dL.  The girls have a target blood sugar of 100 mg/dL.  TJ's is a little higher at 125 mg/dL.   If we had a day when all 3 kids blood sugars ranged from 100-140, I would consider that a Goldilocks day.  (By the way, it has never happened; being a pancreas is ridiculously demanding. I wouldn't recommend the job to anyone.)  On any given day a reading of 250 is considered high.  A number like that would make me shake my head and frown and start the guessing game: Is it sickness? Bad site?  Insulin gone bad?  Dehydration? Full moon? Wind from the wrong direction?   However, a reading of 250 after 3 readings over 500 brings a sigh of relief- we are headed in the right direction.  This morning TJ did a little happy dance because his wake up blood sugar was 111.  He had spent the day in the 200's yesterday- it's a big deal.

Numbers are significant not just in relation to blood sugars but in other ways as well.  For example, last year, Tessa turned 13.  The 13th birthday is a big deal in a happy way.  The 13th Diaversary, that Taya hit last week has a totally different significance.  Is it happy?  Well, sure, she has LIVED with diabetes for 13 years.  Is it sad?  Well, sure, she has lived with DIABETES for 13 years.   I think a fitting descriptive term might be bittersweet.  In January, Tylie will reach her "Sweet Sixteen" Diaversary.  Are you catching the irony in these last two statements or is that just poor D-mom humor?  

Back to the numbers- according to the Center for Disease Control, the prevalence of T1 D in Americans under age 20 rose 23% between 2001-2009.  Current estimates are that 80 people per day are diagnosed with Type 1 diabetes.  The rate of Type 1 diabetes in children under age 14 is expected to rise by 3% annually worldwide.  Now, those numbers are disturbing- not good or bad- just flat out alarming.  I do feel the need to differentiate here.  I am speaking solely about Type 1 diabetes. Simply speaking, in Type 1 diabetes, the bodies immune system destroys the beta cells that produce insulin.  It used to be called Juvenile-Onset Diabetes or insulin dependent diabetes.  At this time, it cannot be prevented or delayed.  There is no cure but there is insulin and different management options available for treatment.  I will be honest, Tylie's doctor at diagnosis stated to us that she had Juvenile Diabetes.  I clearly remember saying to him, "Well, if it's Juvenile, at what age will she outgrow it?"  Yes, I have learned a lot in 15.5 years!  Type 2 on the other hand, can be prevented or delayed by lifestyle choices. While Type 2 is rising at an equally alarming rate and I don't mean to minimize it- please, do not confuse the two types- again the number may not be good or bad, but it is significant!  Well-meaning individuals telling a tiny, energetic 38 pound 4 year old that she shouldn't have eaten so many fruit snacks or asking her if she watched too much tv instead of playing outside is a bit devastating.  (True story.)

Numbers- in our house, we make them a game.  If two kids happen to be testing at the same time, they guess who will be closest to target.  If they happen to have the same number, we laugh.  If it says 123, we laugh.  We laugh, because you can't cry everyday.  These are numbers that the average person has no idea about.  Those lucky enough to have a perky pancreas that does the thinking for them have no idea of the rise and fall in blood glucose daily.  Sadly, we know almost hourly and even though we make it a game, many days it feels like there are no winners.

I am reading a book right now called, Daring Greatly , by Brene Brown.  I started reading it as a teacher but there has been a lot of take away for me as a mother.  In the book, she states that we have to recognize that "we are enough."  That is a hard one for me because I like things to be perfect and neat. I like to know the answers in advance.  Yeah, uh huh, I know, I am a parent and more, the parent of three T1D kids- life is not neatly wrapped and I cannot do or predict it all. (Wow- I just said that!) Another significant point in the book is in regard to taking risks.  I see these two going hand in hand  because in my effort to make life be neat and tidy,  I have not always let people really understand the impact of T1D on our lives.  People looking in often say we make it look so easy.  I think I am doing a disservice to my children and all those other families living with T1 by letting people believe that.  It's hard, hard 24 hour, 7 days a week, 365 days a year work! The risk I have decided to take on this year is educating and advocating.  If people don't want to hear about it, they don't have read my social media posts or my blog.  For me to accept that I am enough, I need to feel I am doing enough.  I might write a thousand posts and people may read only one thing that they can take away.  That number is neither good, nor bad- it is significant.

12 Years

Twelve years ago today we sat in a hospital room with our 4 year old daughter ready- well, "ready" or not- to start our new life with T1.  I remember the little blonde, blue eyed baby who would giggle every time Dr. T would come near her.  She was so ticklish!  She insisted on a band aide after each fingerpoke and her little fingers held every color of fluorescent by the end of the day.  It feels like yesterday and when I think of it, my heart still clenches the same way and I wish I could rewind the clock to take back all the pain this nasty disease would or could cause her. Some days are so much harder than others - there is always kind of a roller coaster - weeks of good and weeks of  anger and weeks of coasting.  In retrospect, I can honestly say I believe, in general,  she has laughed more than she has cried and that is amazing to me!   I am very proud of her and her determination not to let this disease control her life.  In recent weeks, I have noticed even more of a change in her, a maturity.  She recently  met with our nutritionist and came out of the meeting smiling!  I can't remember the last time we left the clinic with a smile.  She was excited about making healthy eating choices and had recently begun to work out with a friend on a regular basis.  The other night, she asked me if I wanted to listen to her speech for English.  It was about Diabetes and focused largely on the lack of education and money available for treatment world wide-  particularly in developing countries. Here is the link to the video she included: http://www.youtube.com/watch?v=vi-QAcZAH7Q.   It is very enlightening and heartbreaking.  It makes us count our blessings.  Twelve years later, our baby is still active, still healthy, still giggling when Dr. T needs to examine her.  Twelve years later, she meets the T1 challenge every day and she is teaching others.  With knowledge is power and progress- I wonder where we will be 12 years from now?

Why TI Diabetes Day?

This past weekend TJ, Tylie and I had the opportunity to attend a workshop for families and children with diabetes.  Taya and Troy were unable to attend due to a volleyball tournament.  Tylie had been asked to paint faces of the littler children there and to help with the children's part of the workshop.  At the end, she and I were part of a panel of families talking about about the insulin pump. 

Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1.  Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding.  It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin.  She has Juvenile Diabetes."  We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition.  And, naive as we were, we asked when this would happen.  We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin.  Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them.  This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin.  This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise.  In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times.  That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.

Now, 12 years later,  I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need.  In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear).  She started out on the tinest dosage- under 2 units total.  I kept thinking this microscopic dot of stuff sure caused a lot of trouble!  She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night.  Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it.  While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come."  Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!

We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus.  Lantus lasted 24 hours without peaks and could serve as a "background" insulin.  The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food.  We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier.  However, shots were still required and in Taya's case, sometimes up to 8 times a day.  And, they were not fun.  We kept hearing about this thing called the insulin pump.  This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days.  (Okay, I am simplifying here, but you get the picture.)  However, there was also this thing called insurance that liked to put up road blocks.  But, many letters and pages of documentation later- the girls got their own insulin pumps!  They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed.  What a blessing these little contraptions are for these kids!  Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change.  She told her, "That was 17 shots I didn't have to take!"    However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time.  He is now also on an insulin pump.

So- yes, things have definitely changed!  And for the better- but it isn't perfect.  It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy.    There are lots of bumps along the way and lots of room for human error.  The pump is a great tool for the potential to successfully control diabetes but it isn't the answer.  My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin.  But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day.  All things that the body of a person without T1 does without an ounce of thought. 

And, now, back to where I began.  Research!  Europe is so far ahead of the US in this area.  The first closed looped artificial pancreas was started just this last week.  Two places making great strides on this continent are Sanford Health and the University of Minnesota.  (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells.  This would eliminate the need for anti-rejection medication because a woman could use her own tissue.  They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1.  The list is endless.  JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US.  86% of all funds donated to JDRF go directly to research for Type 1 Diabetes.  This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts.  These studies also pave the way for insight into other autoimmune disorders.  Links below are provided for some more reading on these studies and JDRF in general.  These studies currently provide hope and I pray for the day the provide a cure!

http://www.mmf.umn.edu/diabetes/stories/index.cfm

http://www.jdf.org/

http://www.jdrf.org/index.cfm?page_id=116413

http://www.sanfordresearch.org/ResearchCenters/SanfordProject/

http://www.sanfordproject.com/Newsroom/JDRFPartnership/