Wednesday, July 1, 2015

Type 1, Year 1

Exactly one year ago, my older son was diagnosed with Type 1 Diabetes (T1D).  As with all such diseases, this one came completely out of nowhere.  It started typically, excessive thirst and frequent urination, and ended up with a four-day stay in the hospital.  He was healthy before and remains healthy to this day, in fact we caught it early enough that he was never sick with ketoacidosis, the potentially fatal complication from excessive sugar in the bloodstream.  We were lucky in that respect.

The reality of a life with T1D is difficult, it means a lifetime of careful management of blood sugars, of always thinking carefully about what you are eating and how to dose the appropriate amount of insulin, of carefully managing the carbohydrate demands of exercising muscle tissues when he plays soccer. But the emotional toll is far worse. A parent never, ever wants to hear that their child has a potentially fatal autoimmune disease and, as an adult you mind immediately wanders to the next 10, 20, 50 years of your child’s life and you feel overwhelmed and panicked.  I spent a week in tears, trying to me strong in front of my son, but feeling crushing panic, sadness and despair inside.  I would take bathroom breaks to go and cry.

Amazingly the center of strength in the family was my son himself.  Well, I imagine it is not amazing to anyone who has dealt with a similar issue – they know firsthand how amazingly resilient are kids.  He cried exactly once – when he was told the diagnosis – and has never felt sorry for himself save for a couple of moments here and there when the burden of having to deal with diabetes when his friends do not becomes too big a drag.  But from day one he took charge of his own care, began administering his own injections, calculating his carbs and testing his blood sugar.  He has risen to the challenge and his determination not to let it derail him has been an inspiration to us all.

 In the past year I have never stopped marveling at how well he has dealt with such a life-changing event.  Modern medicine and technology has helped.  He now has a sophisticated insulin pump that attaches directly to his body and allows him to be active and avoid needles, injections and having to carry around too much equipment.  He can even swim with it, which is good because he likes to swim more than anything.  We have, as a family, adjusted to the new reality and are now used to counting carbs, making sure he has his bag with supplies and emergency glucagon and helping with pump changes that occur every three days.

As an economist I marvel at how difficult this diagnosis must be for families without excellent insurance, stable jobs and local medical expertise.  We are incredibly fortunate to have the time, the resources and the help near at hand.  Something like this makes one appreciate the need for universal access to health insurance.  This is a disease that is unpreventable.  A bad RNG as my son calls it, referring to the random number generator code that determines the bonus prizes he gets in his favorite video game.  [This has led to the discussion of how it is not possible to program true randomness, and whether there is any such thing in the world anyway – but I digress]

I have learned to be patient with those who don’t know the difference between Type 1 and Type 2 Diabetes, as I was completely ignorant of it prior to my son’s diagnosis as well.  For the record, they are entirely different diseases common only in the fact that they both involve your body’s ability to deal with sugar.  T1D is an auto-immune disease where, for reasons still unknown, your body’s immune system decides to attack the cells in your pancreas that produce insulin – eventually destroying them all. Insulin is the hormone that allows your body to process the sugars in the bloodstream and move them to the cells where they are converted into energy.  The key with T1D is that the body processes the insulin just fine; it just doesn’t make any itself.  My understanding of T2D is that the body commonly does not process insulin effectively so even though the pancreas is making it, the body cannot metabolize the carbohydrates.  Thus, while people with T1D can essentially eat as they normally would, taking insulin injections to match the amount of carbs, people with T2D often have to heavily restrict carb intake.  So yes, my son can have the cake at the birthday party, but thanks for asking.

I write this all here because after a year of minimal blogging I felt I should explain the inactivity.  My inattention to the blog has a lot to do with time – management of my son’s diabetes at first was very time consuming.  It also has to do with energy, when my son switched to his pump I was waking up three times in the night to check his blood sugar for three months.  But largely it has to do with priorities.  I am chair of the OSU economics department, I am a full-time professor, I have numerous ongoing research projects, I am writing a textbook and I am, most importantly a dad who puts his kids ahead of anything else.  So the blog suffers and I regret it, but not that much.  I keep it alive because I do hope to return to regular blogging someday – it is something I enjoy a lot.

In the meantime, I hope you can all enjoy the podcast Jeff Alworth and I have begun.  This allows me to take a two-hour lunch break and record a conversation primarily about beer but also about the business and economics of brewing.  Please check it out.

I thank you all for your support of this blog.

-Patrick Emerson


Jim said...

Thanks for this post. I'm a huge fan of this blog (it appeals to the side of my personality that pursued that Masters in international political economy) So naturally, I hope you can return to more frequent blogging, but as a person who has abandoned not 1 but 4 blogs, I understand. And I'm a huge fan of this post as well, (it appeals to the part of me that currently works in health behavioral change).

It's very rare to have people talk so openly about the struggles of dealing with a complicated chronic diseases outside the various fora that are set aside for those discussions. The burden on families can be immense and I'm pleased that you decided to share here. So thanks!

And the podcasts have been great so far. (I haven't listened to the 4th one yet, but I will this weekend).

Patrick Emerson said...

Thanks Jim, I appreciate the nice comments.



Derrick Peterman said...

I'v always enjoyed the blog. All I can do is wish you and your family the best in this difficult situation. Looks like you're all handling as well as possible. My son has autism, which is certainly different issue, but have some understanding how consuming this can be.

Patrick Emerson said...

Thanks Derrick.

Unknown said...

I always enjoy reading both of your blogs and have missed them over the last year. Whenever a new article pops up in my RSS feed I am excited for what is to come. Clearly life must come first and so thanks for taking the limited resource of time that you have to share your thoughts and commentary.

Stay happy and healthy

Unknown said...

Hi Patrick!
I just started reading your blog because of the podcast with Jeff (of which I am looking forward to listening to sessions #2/3/4/5 this evening). I have been dealing with T1D for 43 years (was in 8th grade when diagnosed), and am doing fine. Yes, it takes time to adjust, and the fact that your son is taking responsibility for his own treatment is a very good thing. Folks are concerned that it is *so* much work to think about it all, but believe me, after a while it is just a part of your life. It will become habit for your son, to check his glucose, make sure his pump is good, and that he doesn't eat too much. Yes, I needed to change things a bit 2 years ago, and I am better off for it. And your point about insurance/stable job/time is well taken. I know how much of a change my mom had to make in cooking our meals, I remember helping her plan things. But again, in time everything settled down (and besides, my mom was a great cook). I think you and your son are on the right path, so breathe deeply and keep moving forward. My prayers are with you.

Patrick Emerson said...

Thanks for the nice comment Kevin. I always appreciate hearing good T1D stories.



Donnie White said...

Diabetes is a very wrenching condition. Just the level and maintenance that it entails, along with the costs, can be overwhelming. Like you, I support the idea of more people being enrolled in a health insurance plan. It will certainly help those who have to live with it everyday. We support your son all the way, Patrick. Take care.

Donnie White @ Good Health Quotes

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