Why Me?

Why did I get Type 1 diabetes?  The short answer to what seems like an obvious question is that I have no idea.  It’s also not a question I’ve really asked with an eye toward understanding “why did this happen to me?”  That feels like something I would have been likely to ask my parents in tears and frustration if I’d been diagnosed as a kid.  As an adult it’s not something I wonder about, because I know Type 1 isn’t my fault, and “why did the universe do this to me” isn’t something I typically ponder.  The more common question and one I’ve been asked repeatedly is “how did this happen?”  What caused a seemingly healthy 42 year old woman with no family history of T1D to wind up with this disease?  The answer to that one isn’t as short, but I have a guess.

In the last few years I’ve heard 2 different speakers explain the belief that the biological changes that can eventually lead to a T1D diagnosis are present in the body as early as 2 or 3 years old.  If the right trigger comes along after that day, your immune system attacks the insulin producing beta cells in your pancreas.  That attack means it’s just a matter of time before you get handed your first insulin prescription.  Don’t encounter something that triggers the attack and you never hear about Type 1.  What are the triggers?  It can be a virus, some sort of toxin, or something yet unknown.  I’ll never know for sure what made my body decide it needed to kill those vital beta cells.

People who know my medical history in recent years have often had the same guess about what could have led to T1.  It’s an antibiotic called Avelox.  In 2010, I took one dose of that medication and it set off a body-wide chain reaction in what is called “Fluoroquinolone Toxicity Syndrome.”  Within an hour I lost feeling in my feet and hands and went to the ER where I was handed a new prescription for a “more appropriate” antibiotic to treat a cough.  I was also told the numbness and tingling could be addressed with Benadryl and would pass within days.  Instead the reaction spread and I developed muscle spasms, insomnia, tendonitis, anxiety…the list of symptoms covered me from head to toe.  A neurologist diagnosed me with MS, a rheumatologist diagnosed me with arthritis, and after MRIs, x-rays and more vials of blood than I can count, no doctor could explain what I was experiencing.  But they all assured me it was impossible for an antibiotic to cause my issues.  I found online communities full of people around the world having the same reactions, many of them so severe the people became disabled.  (If you want to learn more, “Certain Adverse Events” is an amazing film on the subject of these medications and the FDA approval process.  The stories are heartbreaking and infuriating.  Get it on YouTube or Amazon.)  The FDA has since added several “black box” warnings to this class of medications, including one warning that a single dose can cause permanent neuropathy – the symptom that I continued to have for years.  Is it unreasonable to think the damage the Avelox caused could have extended to my T1D diagnosis 4 years later?  I don’t think so.  I’ll never know and it doesn’t matter, but I believe the odds are good that the pharmaceutical industry led me here.  An antibiotic may have been the toxin that triggered a reaction that was hiding in my genes for 40 years. 

In other news, tomorrow is my third “diaversary.”  3 years since I was diagnosed with Type 1 Diabetes.  In ways my life is exactly the same today as it was that terrifying day.  At the same time I feel like everything in my life has changed.  Why did this happen to me?  I saw a video this week from Team NovoNordisk, a professional cycling team composed entirely from diabetics.  One of them said he got T1 “because it was my turn.”  That’s as good an answer as any.  Life happens.  This happened to my life, and I can either deal with it or die from it.  Maybe this happened because I can handle it.  Maybe because I needed a challenge, or maybe because the world needed another voice to stand up and educate people about Type 1.  Maybe it happened for no reason at all.  Whatever the reason or reasons, I’m celebrating another year of surviving.  I’ll celebrate each of these anniversaries until the researchers working on this disease find us a cure.  Then I’ll have an incredible new anniversary to celebrate.

I refilled most of my prescriptions this week...here's the fully stocked "D cupboard" in my kitchen.  CGM sensors, protein bars and candy, needles, test strips, glucose, alcohol wipes...I could really use this space for kitchen things!

We Did That!

I’m not athletic.  I know, that statement isn’t a surprise to anyone who’s known me in the last 30 years.  10 year old softball Dana would probably be pretty disappointed at this discovery, but 45 year old me is OK with it. Why does it matter that I’m not an athlete?  Because this post is about putting a bow on finishing my 3^rd half marathon.  Like a lot of people I have an image in my head of someone who does long distance races, and I’ve never looked like that person.  I do it anyway.

After this year’s race we made a list of the highlights from our experience.  The first one wasn’t actually on that list, which is one of the coolest things about me writing it down – my Type 1 was a non-factor.  This is the first race we’ve done since I got my CGM, so we had no need to worry about stopping to check my sugar.  The end result of that is that neither of us really thought about me.  Every now and then I’d look at my watch to check my digit and that was all.  I wasn’t high, so I didn’t need insulin.  I wasn’t low, so I was safe.  The focus was on the race, on getting through 13.1, and on our shared achievement.  That’s exactly how it should be.

The race itself was an adventure and another unique experience.  We saw a woman running barefoot right from the start, and firefighters running in full gear.  We interacted with more walkers than we’ve ever seen before, and shared an experience with several of them when a total psycho thought he could ignore barrels and cones to drive down the course that we were all racing on.  Three times.  We had several full marathon runners near the end of the race come up behind us and shout encouragement…when they’d already run about 25 miles in the time we went 12.  As we have every year, we found the fans in Tremont handing out little cups of beers to the racers.  5 miles was a long time to wait for that sample!  We got an incredible laugh at a fan wearing only a royal  blue Speedo and a smile while he lifted a sign that said “Shut Up, Legs” somewhere in the 10-11 mile area.  We found a water stop volunteer with a pitcher who refilled my friend’s backpack with water, a helping hand without which we wouldn’t have made it to the end.  We went past a random fan offering up a bowl full of ice cubes to cool us off as we went by, and another volunteer offering to hose people down.  And we enjoyed the most supportive crowds of the 3 years we’ve done this race.  Cleveland came out in force for the 40^th annual marathon, and that helped us too.

We finished in pouring rain, and very few drinks have tasted as good as the free beer we collected at the end and drank huddled under a mostly useless tree.  This is hard, and we haven’t had a race that didn’t present its own list of challenges.  We didn’t hit our time goal, finishing 4 minutes behind last year’s pace.  But we finished, and there were a few times that we both doubted whether we’d make it that far.  We’re not athletes, but we finished and we finished strong.  Next year we’ll still be aiming to finish in less than 3:30, and I wouldn’t bet against us.