Celebrating 47 Years with Type 1 Diabetes
On this day, 47 years ago at Columbia Presbyterian hospital in New York City I was diagnosed with type 1 diabetes. I was 2 years old.
I used to hide these numbers, thinking they aged me. But not anymore. I'm PROUD of these numbers. 47 years with type 1 diabetes is no easy feat.
My diagnosis came at a time where there was no diabetes technology: no insulin pumps, no home blood sugar testing, no continuous glucose monitors. People often ask me how I did it, how my parents did it. I can't really say for sure other than, we made the best of what we had. There wasn't really any other option
I'm proud that I have survived and thrived in spite of having type 1 diabetes. It has slowed me down; it has forced me to changed my plans, sometimes at the last minute, but at the end of the day I don't think it has stopped me from accomplishing my goals. If anything, I think it has pushed me to try harder.
There are so many reflections I have today, it's impossible to capture them all, so I'll focus on some accomplishments, and come challenges. I always say that diabetes hasn't stopped me from accomplishing my goals, though it can slow me down, or have to change my plans. My accomplishments are not intended as a list of brags, rather than things I was able to accomplish with hard work, focus, and a whole lot of planning:
Some of the things I've been able to do:
👩🎓 Graduate college (no diabetes tech other than blood sugar testing)
👩🎓 Graduate graduate school while dealing with diabetes retinopathy and the possibility of losing my vision. (still no diabetes tech)
✈️ Travel all of the world: South Africa, Australia, Israel, Japan, Italy(4x), Ireland, Germany, Spain, Portugal
🛵 🐠 Travel adventures: snorkeling at the Great Barrier Reef; Segway tours in Israel, Spain, and Germany; scooter tour in Bermuda
🎯 Start an adults with type 1 diabetes camp program more than 6 years ago which is still in existence
✔️Advocate for people with diabetes to make things better for all people with diabetes
Some struggles along the way:
It hasn't been all sunshine, unicorns, and passport stamps. Insurance: From the get-go insurance has been a bear to cross.
🔹insulin syringes: Early on our health insurance covered insulin, but not enough syringes to administer the insulin. This was the ONLY option. 🔹 Home blood glucose testing came about sometime in the 1980s and was not covered at all by insurance. I was lucky to have worked at a diabetes camp and at the end of the summer they gave us any leftover supplies. Otherwise it was wicked pricey to buy out of pocket. 🔹CGM: When this technology first came out, it's something I knew I needed to have. It wasn't covered by insurance early on. I worked with my health care provider, and my CGM company, and figured out how to get the documentation needed for it. Though I did pay out of pocket until that insurance approval come through.
This is just a short snapshot into my life with diabetes. This doesn't go into the daily struggles, or even any of the emotional aspects involved. This is just my own celebration of me and making it to 47 years with this disease, when the prognosis early on wasn't great.
Just remember: living with type 1 diabetes is not easy and there are many bumps along the way which can be so hard to go through. I try when possible to celebrate the small things, and in this case the big ones.
I look forward to celebrating my 50th diaversary -- hopefully with a party, maybe a new car. (When I was in Los Angeles a few years ago I walked by a McLaren car dealership with my husband and innocently said "Can I get one of those for my
50th diabetes anniversary?" I don't think he agreed to that one.
Tonight I plan to celebrate at one of my favorite tapas restaurants with a large glass of sangria.