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.

Reflections on JDRFcc13

Sitting here, writing, while TJ is at baseball practice seems a somewhat surreal.  "Normal" life has resumed and we have been home less than 24 hours.  Yesterday at this time, we hadn't even boarded our airplane after our amazing experience on Capital Hill.  I am going to touch on the highlights but I don't think anything I say will do the experience justice.

The City:

It was an experience in itself watching the kids take in history.  TJ was in awe of the sheer size of the monuments. Tylie was amazed by everything around her.  She literally walked at snail's pace so as not to miss a single thing.  Taya just soaked up the atmosphere.  One of the most compelling things we did was to see the Changing of the Guard at Arlington.  Perhaps it was more meaningful because without the sacrifice of those who came before us, we would not have had the opportunity to come to Washington and plead our case.

The kids by the Reflecting Pool on the mall, wishing for a cure!

The Conference:

I am not sure it can be called a conference, exactly, but that is how I think of the first two days at the motel.  I have already highlighted day one in my previous post but from there, we really got busy!  The organizers of the event, Hasan Shah and his staff, Camille Nash and Angie Platt, as co-chairs and the numerous volunteers have to be commended.  Our family felt prepared upon arrival and any questions that came up were easily answered.  The Town Hall meeting was inspiring.  Afterward, Tylie said her new goal was to be a part of that panel someday.  TJ couldn't get over all the athletes- racecar driver, Charlie Kimball, Gary Hall, Jr., baseball announcer, Brian Kenny, and Ray Allen in the audience.  He has always thought nothing could stop him and their stories only proved his point!  More than once during the course of that meeting did I feel my eyes tear up.  On Monday, the kids had been interviewed and Tylie had responded to a question saying, "I have Diabetes like I have blue eyes and blonde hair.  It isn't who I am."  Both Troy and I felt ridiculously proud in town hall meeting when Mary Mouser stated virtually the same thing!  These T1 kids grow up fast and they grow up smart!  The Blitz meetings were a bit overwhelming for the kids.  Tylie vigorously took notes afraid she would forget to say something important.   Troy noticed that they were very similar to the role play situations they do as part of DECA competitions.  Tylie and Taya have both participated in these events and it helped them to be prepared for the meetings on the Hill the next day.  TJ, especially, appreciated the social hour as he had more time to mingle with his new friends.  He came home with a lanyard full of pins and stories to tell about each one.

TJ and Charlie Kimball

The Blitz:
The big day was on Wednesday.  We loaded the bus before 8 am and hit Capitol Hill.  We really had no idea what to expect at these meetings and each one was quite a bit different from the other.  All were positive.  Two of our meetings were delayed as Senators were both held up testifying at hearings.  We watched them on the monitors in their offices.  In addition to attending a hearing ourselves, the kids got a first hand look at the day to day workings of our elected officials.  They are very busy people!  It made us appreciate even more the time they were able to give us to tell our stories.  The hearing itself was a little emotional for me.  I don't know if I was overly tired or just overwhelmed by the sheer number of people there hearing the testimony, but several times I got very teary eyed.  Listening to Jean Smart talk about her doctor recommending abortion, Ray Allen so clearly describe the parenting perspective, listening to Jeffrey Brewer and Dr. Rogers speak about where we are in the research- we have come so far, but yet there is far to go.  Senator Heitkamp said it best when she stated in our meeting that much time has been spent on cancer and heart disease.  She said, "That isn't a bad thing but more needs to be done for Diabetes.  I believe we will have a cure."  She happened to be our last meeting and we couldn't have asked for a more positive finish to an incredible day.  An unexpected special moment occurred during the group photo when VP Biden gave TJ is small American Flag pin and Tylie got a hug.  He also told her he didn't think girls should marry until they are 30!  How cool is that?  We left Capitol Hill feeling invigorated and empowered.  Tylie even commented that maybe working in government would be an "ok job."  We couldn't be more proud of all three of them. They have grown beyond measure by this experience.

Ready to go meet some lawmakers!

The Work:
Oh, but there is still much to do!  I told Camille before I left that we wanted- needed- to do more to get the word out in North Dakota.  Troy stated how good the experience was for our family.  All three kids said they would do it again in a heartbeat.   They are lobbying to go to the Friends for Life conference next year to continue making connections and to keep spreading the word.  They are speaking to our local parent group in August about their experience and already talking about meeting with our senators and representative again soon.  I have no doubt they will lead Promise meetings with a flourish! I am working on a meeting with TJ's principal to talk about a JDRF School Walk this fall.  He can't wait for our annual talk with his class, as this year he will have so much to show them. He has already re-named his little stuffed pancreas that he uses as a prop, "Arty", short for artificial pancreas, of course!   Right now, I am so pumped up I want to quit my job and advocate 24/7, but sadly, we have a house payment...and medical bills!  But, we will make the time because we have felt the power of our voices.  Since we have been home today, I have already received a text message.  A friend of a friend has a newly diagnosed child and wondered if she could call me.  It seems I get those messages more frequently, lately at least once a month and sometimes twice, and I'd really like for them to stop.  I'd like to not pick my son up from baseball to find his blood sugar 425 because somehow his tubing literally got tied in a knot, starving his cells of insulin.  I'd like to not have that extra layer of mother/daughter animosity simply because I cannot stop myself from asking if blood sugar has been checked .  Of course, that is only the start of a list based on what happened in the 5 hour we have been home.  D does not give us a break.   When I tucked TJ in to bed tonight, after changing his site and restarting the flow of insulin, I thought how nice it would be to go to bed without fear.  As he held tight to his JDRF CC Build-A-Bear with VP Biden's American Flag pin proudly affixed to its tiny t-shirt, I again resolved to make the time to continue what we have started this week. Now that we have seen what we can do, advocating is no longer a choice- it is a responsibility!

JDRFCC13: Advocates and Friends- They ROCK- every last one of them!!!