Monday, October 31, 2022

45

Hey, it’s been a while and I'm sorry about that. Between trying to navigate a Covid world; a move that was anything but easy, and some other stuff I’m still trying to process, blog post reserve has been drained. Burnout was and is is real. The good news: 

A. I’m working onseveral new posts, including one on my thoughts on the Omnipod 5, one on local D buddies. Happy to say that blog posts in process are very real and will be posted soon and I am so very glad and thankful! 
B. Today is my 45th Diaversary! Yep, today marks 45 years of living with diabetes. 45 years ago a little girl with a big imagination and extensive vocabulary entered the hospital on Halloween morning with a busted pancreas and was diagnosed with T1. 
This year’s celebration is quiet, mostly because it’s Monday during a week that requires a lot of juggling on my end.
 Every year on October 31st I write a list of things I’m grateful for and in no particular order. Here’s this year’s list. 

  1. Cheese - in all shapes and forms
  2.  My nieces and nephews 
  3. Good books 
  4. Tasty tea - super addicted to Rooibos
  5.  Salt air 
  6. Dark chocolate topped with sea-salt
  7.  The color green 
  8. Cheeseburger, medium rare, topped with the works - bonus points for jalapeños 
  9. Vintage Costume Jewelry - I collect it 
  10. “Real Jewelry.” I collect that too :) 
  11. Dogs. Dogs are awesome and I’ll fight you on that 
  12. Cooking for the people I love 
  13. Making a tasty meal from scratch for myself. Cleaning up after? Not so much 
  14. Traveling - I miss traveling. I need to travel. I have over 55,000 air miles - time to cash them in 
  15.  The color yellow. I love yellow - it reminds me of my mom and daffodils and the sun. Truth be told I had a thing for yellow and purple as a little girl. Still do 
  16. Really good extra virgin olive oil 
  17. Exploring - going to a new place and discovering its nooks and crannies; locals and spots that make said place magic
  18. Clouds 
  19. Photography - I love taking pictures 
  20. Spicy sushi 
  21. A meal out with friends 
  22. Atlantic City Italian bread. GOOGLE IT 
  23. My DOC family and friends - you are my Friends For Life 
  24. Swimming in the ocean 
  25. PBS 
  26. Peanut Butter 
  27.  Manatees 
  28. My friends kids 
  29. Hanging out with my nieces and nephews as friends
  30. The smell of honeysuckle bushes 
  31. Sriracha 
  32. Live theater 
  33. Going to the movies
  34. A horse named Stormy 
  35. A dog named Misty 
  36. A cat named kidden 
  37. Serving my tea from a yellow porcelain teapot I bought for 10 bucks at an estate sale years ago 
  38. Presecco and wine 
  39. Tito’s Vodka 
  40. golden hour 
  41. The beach 
  42. My parents 
  43.   My sister 
  44.   My busted pancreas, aka my diabetes dragon. FTR, I've made friends with my diabetes dragon - her name is Mabel 
  45.  Me 
  46.  YOU.

5 comments:

Grainne Thriveabetes said...

Happy Diaversary Kelly!!

Rick Phillips said...

Oh darn it Kelly you gained on me again. Every year you creep up on me one more year and what does that mean I have to do? Yeah, I have to get another year. That is OK, I recall my 45th. But wait until you get to 48. Now that one really rocks. :)

Happy diaveresary, I hope you pass me over many times over.

Sue said...

I need to make such a list -Happy 45th ... you're crushing it... your kindness and helping others with Diabetes navigate the challenges they encounter is so important. Keep rocking it.

Scott Strumello said...

I never "congratulate" anyone for d-anniversaries; its really nothing to celebrate (though still slogging thru it is worthy of acknowledgement, I guess). The two of us are very close in terms of d-dx dates. In July, I marked my 46th anniversary of T1D. Its weird: we're both at the threshold of becoming Joslin 50-Year Medalists, and yet it doesn't seem all that long ago. Its like a blink, and all that time has passed. I still haven't submitted any paperwork for a Joslin medal ... maybe I will for 50, but probably not until I'm at 48 or 49 years.

And yet, today, patients are dealing with crap that we should never be dealing with, like affordable access to such basics as insulin, testing supplies, CGM sensors, etc. That is a stunning example of public policy failure.

Thanks to a combination of indifferent, incompetent and/or corrupt lawmakers, nothing meaningful has happened, although the FTC is now all over the PBM rebate kickback problem, plus I am pleased that each of the 3 major insulin manufacturers have stepped up which, was one of the things Aaron Kowalski called for back in 2019 in the American Journal of Managed Care (the executive and legislative branches of government have not acted).

Today, the Big 3 branded insulin-makers now sell unbranded prandial and basal analogues and coupons enable anyone (insured or uninsured alike) to buy lispro, glulisine and glargine for $35/vial, while aspart is only slightly more costly with GoodRx coupons, plus the company also launched an unbranded version of degludec. While those are signs of progress. JDRF also brokered a deal for Civica to further slash prices to $30/vial perhaps by 2024. As I said, that is $#!t we should never be forced to reckon with, and yet its still happening routinely today.

Beyond that, patient activism has helped to get widespread CGM coverage by insurance to the point where its now effectively a "standard of care" which a few years ago patients still struggled to get their insurance to cover it. And, patients were also primarily responsible for getting CMS/Medicare to cover CGM's. We were the one's who persuaded the FDA to relabel the devices from adjunctive to therapeutic devices from which insulin dosages can be based, and that did not happen by accident, it required commitment and relentless activism to actually make it happen, hence I do think patients deserve acknowledgement for their work to accomplish those things.

That said, travel has finally started to resume. I'm headed to Iceland to see the Northern Lights in 2 weeks! We also went to Nashville for Memorial Day, as well as to Phoenix, Atlanta and Orlando this year (Phoenix included a trek to Grand Canyon which was nice, and Nashville was great, although I found Atlanta less impressive; it was fine, but there was not much was going on there), and my impression of the town that the mouse built is to call it Bore-lando. Still, our trekking to any of those places from NYC would have been unheard of a year ago, and for that, I am grateful.

In the end, commemorate your d-anniversary, but curse the fact that you still have an anniversary because we still are not cured. While the patient community has pushed to make access to basic care a reality and I think we've been pretty successful in making things happen, but it would be nice if someday, others realize that none of those things were automatic.

Nicté said...

My dearest Kelly, I'm so glad you're writing again. I have to get back in my writing game soon enough but I'm busy surviving at the moment.
My diaversary is creeping in (February will be here before I'm ready) and I always think of you, and how wonderful it has been to have you in my life, to know that I can in fact, get to celebrate and acknowledge my diaversaries just like Dear KK!
You are such a badass and I can't wait to hug you in person one day, buy some really good bread and butter and enjoy it together!

In the meantime, I wish you more good things in life, and lots of hugs for the rough days.
Also, you can always come to San Diego with those miles! I'd be happy to show you around :)