Thank you to those who participated in the infusion set online research study previously detailed here. Thanks also to those who looked into participating, and to those who shared the screener link.
As many of you know, insulin pump infusion set functionality is a topic close to my heart. Understanding more about user experience is invaluable to the future of diabetes care. I hope to call on you again for future opportunities.
Thanks for doing your thing!
-Ally
Good eggs still exist despite the healthcare loop-de-loop (see here). One of them is my friend, who recently switched insulin types and donated his no-longer-needed BD “Mini” pen tips to yours truly.
It’s not every day that a young professional is seen skipping through the office, clutching a Ziploc baggie full of unused needles to her chest as if she had won the lottery, but I was totally okay with being “that girl” today.
To my generous friend:
You know who you are. The little things matter in a big way. Your kind act makes my life with diabetes literally and figuratively less painful with this donation. Thank you…
I work with Veterans and Service Members and I am blessed to call many of them my dear friends. They hold a very special place in my heart. For those of you reading this who have served or are currently serving, thank you for your service and I hope that you enjoyed a nice, relaxing Veterans Day with family and friends.
I owe you a detailed description of this week’s meeting with the insulin pump manager and my health care team, but that may have to wait until the weekend. (If running on grad school vapors was a thing, it would definitely be “my thing.” Real life beckons at the moment).
In the meantime, for those of you who reached out to offer help and to commiserate upon reading Broken Record, first of all I want to sincerely thank you again. Your words of encouragement, sharing of the blog post, and overall viewership of that piece really helped to keep me afloat and to work to fix these problems. And you also taught me that if I do not fix the pump problems, that is okay, too. Life will go on, and I will adjust accordingly. Many of you have done so already; thank you for paving the way. I felt your virtual hugs for many days, and that support is something that I will carry in my heart for a long, long time.
Until I can write a lengthier post, I do want to provide updates, especially for those of you who are going through what I am/was with the insulin pump recently. The following are just a few positive things to consider if you are/were in my shoes with the pump:
1.) Try switching insulin types in the pump.
Novolog has made an enormous difference for me. I am not sure why my body/pump decided not to get along with Humalog recently, but it was a very nasty divorce process. There were lots of tears and the neighbors definitely give us weird looks when we walk by now.
Sometimes just testing the waters with something new can give your body and mind the break that they need to re-group. I have witnessed a very positive difference in my blood sugar numbers since the insulin swap-out. And mentally, even if the insulin type switch is solely placebo effect, I will take any positive change at this point.
2.) Bubbles
Novolog has some bubbles, too, but not to the same extent as what I witnessed with the millions of tiny, feisty, stubborn Humalog bubbles. Novolog’s bubbles are bigger and fewer, allowing for the insulin in the reservoir to continue to do its job and to squeak by the bubbles. This is just my experience at this point in time, but so far, so good. More to come in a future blog post…
3.) Ask and you shall receive.
I asked for the doc’s help regarding my issues, and I was blown away by their feedback. I also semi-harassed Medtronic and my health care team to troubleshoot with me, and, to their credit, they heard me out. They set up meetings quickly, they yielded multiple phone calls, they read lengthy emails, and they all agreed that something had to be done. In the past I spent my hours and days wallowing in the idea that “Life might just have to be like this on the pump.” Then I saw many of you living well with diabetes and realized that I was horribly mistaken. You were living with diabetes, and you were doing so gracefully and successfully given the rebellious nature of a major organ. I, on the other hand, was stuck in the mud with my wheels spinning, living without direction in my diabetic journey.
Once I admitted this, acknowledged that what was going on was not okay, and asked for assistance, the burden did not feel so heavy and so lonely. As of today, I am in the “icing my back” stage, rehabbing from carrying the cumbersome load of previous insulin pump issues. But I am standing a little taller, my head is held a little higher, and my heart is definitely bursting for having you all to bear witness to the struggle and to cheer from the sidelines along the road to getting better.
I will forever be humbled by all of the hands in the health care pot that reached in, without hesitation, to help in my time of suffering.
Thank you…
Wow- it’s really been one month since Very Light, No Sugar got dropped off by the stork and fell into the internet world?! First of all, I want to say THANK YOU to everyone who reads my blog. While I am probably not a blogging superstar by any means, I am happy to report that SOMEONE OUT THERE READS THIS! That, in and of itself, has helped me immensely to not feel so alone with diabetes.
The same concern from the very first day of kindergarten- “Will anyone like me?”– translates over into adult life, too. So, to those who do like me, thank you. It is a pleasure to get to know you through our shared connection of diabetes, and through the general connection of our roles as human beings supporting one another. It has been quite therapeutic to have someone to talk to here, to hone my writing skills that my talented English teacher, Ms. O’Neill, spent countless hours instilling in me during high school, and to connect with all of you. I have thoroughly enjoyed reading your blogs, your tweets, your Facebook posts, and the like.
On the bad days, you are the motivation to keep on truckin’. On the good days, I am happy that we all celebrate our moments of victory together. I have learned so much from you- more than any medical book could have ever taught me. You helped to troubleshoot my pump issues, analyzed proper sick day protocol, and so much more. Your wealth of knowledge of one of the most complicated diseases out there never ceases to astound me. You know diabetes because you live diabetes. You cannot put a price tag, or even a graduate degree, on such intimate understanding of a chronic illness. I wish that we did not have to comprehend exactly what the other person means when it comes to diabetes, that we did not have our own diabetes vocabulary, that this would be cured overnight for us, and that none of us had to suffer difficult times. But if we have to go through it, I am so happy to be doing so with some of the best people around.
My one regret is that I did not start this process sooner. I suppose I had to build up the confidence to give it a go, and I am so happy that I did. It helps that those in the diabetic online community (#doc) were so welcoming in letting me be a part of their diabetes social media advocacy (#dsma) efforts by expressing what being diabetic means to me. I promise to pay it forward to other “newbies” in the future whenever possible. I want to specifically express gratitude to Craig @HumnPincushion and Jere @integraljere for rooting for me in the very beginning. Sometimes all it takes is knowing that you have a little support out there, and it gives you room to grow. You both exemplified this for me, and I have learned a lot from your kindness.
Cheers to you all, and keep doing what you do in terms of our ongoing diabetes discussion. It means something to someone out there, especially on the sick days.
Thank you for coming into my heart. You’re officially stuck there, just saying.
Love,
Ally
Not that I carry oodles and oodles of internet power here, but if you are reading Very Light, No Sugar right now, I invite you to participate with me this week in thanking a friend who has supported you in your diabetes journey over the years. These people make life with diabetes a bit easier for us through their patience and generosity of spirit. I have many supportive friends and family members, but out of everyone, Ashley has always shown a keen interest in diabetes and in helping me to advocate for our cause.
She has a secret fan club of doctors and nurses at my diabetes clinic because I have admitted that I bolus more insulin around Ashley. I am simply more comfortable because she has seen it all- the highs, the lows, the bad moods, and the goofy ones. She knows what to do if something goes wrong. And most importantly, she understands a lot about diabetes in a world where not many others fully grasp what it means to deal with this disease every day. It is difficult to articulate what it entails to have a best friend like Ashley on your team while managing diabetes. Let’s just say that it’s worth a whole lot; we don’t want my mascara to run everywhere now! Ashley’s selfless nature has earned her the “Thank A Friend Day” award in my book. Thank you, Ash!
This is us having our own party in a hotel in Rhode Island after losing power for days during a massive snowstorm in 2013. I know, I know- we are reallyyy cool people…
A friend- let’s call her Kayla- made this comment in a grad class we are taking together this month in regards to her former interactions with a doctor. As a teenager, Kayla was understandably a bit defiant in terms of complying with her physician’s advice. Weren’t we all? But one day she had an epiphany: What was the point of attending the appointments if she was not willing to be open, honest, and determined in the process of seeking care? “My doctor is showing up, so I probably should be, too,” Kayla realized. She changed her outlook and told the doctor her concerns while soaking up his recommendations, taking baby steps until she was comfortable to set more progressive goals along the road to getting better.
The class laughed and we all nodded our heads in agreement. We can go to the doctor multiple times a month to get bandages placed on our respective health maladies, but this is only temporary relief for pain and suffering that is long-term in nature if it involves chronic illness. We must not simply “show up” with our physical presences, but also with our attitudes.
I have a doctor’s appointment tomorrow and I hope to carry Kayla’s mantra with me. I want to “show up” with my “game face” on, ready to tackle the issues. My doctor is strong for me every time I seek her help, so I must, in turn, be brave when making the adjustments she suggests.
Thank you to everyone who offered words of support during my rough day yesterday. Unfortunately, those days happen more often than I would like for various uncontrollable reasons. Chronic illness is like trying to stop a leaky faucet by clogging it with a piece of Swiss cheese. When you fix one spot, another issue can always arise. My pump site is working well today, but my allergies might cause my liver to release sugar and my blood glucose levels to increase, for example. Alas, it is a new day and I am thankful that the diabetic online community understands what I mean.
Enjoy the rest of your weekends. Here’s to a week of good health for everyone.
Very Light, No Sugar 