Friday, June 23, 2017

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!