Through a series of unfortunate miscommunications between me, my local Tandem Diabetes representative, my endocrinologist, and a diabetes education center, my journey with an insulin pump has been significantly delayed. Up until this past Monday, I had been assured that the only training I needed prior to pumping insulin would be from my Tandem representative. The morning of my hypothetical appointment with the rep, less than 30 minutes away from beginning to program my basal rates, I received a phone call from my rep saying that my appointment with the diabetes education center had to come first, that their “pump start” class was mandatory for my endocrinologist’s patients that are new to pumping, and I would need to follow up with them on the necessary paperwork.
As of this blog post’s publishing, my insulin pump is sitting in its original box, buried in our closet of diabetes supplies behind boxes of insulin pen needles I can’t wait to leave behind.
I’m still unsure on the exact timing of what is to come, but here’s what I know has to happen before I start pumping actual insulin:
- I have to take the Diabetes Education Center’s “Pump Start” class – currently scheduled for early October.
- I have to pump saline for at least 3 days, more likely a whole week.
- Before pumping saline, I need to record at least 3 days worth of meals, carbs, blood glucose levels, and insulin taken. This will serve as the basis for my pump settings.
- While pumping saline, the same data needs to be recorded and reviewed during the follow up appointment.
- After pumping saline, I start insulin.
- Some time after starting insulin, there will be another appointment to follow up with my transition.
Here’s what I don’t know:
- If my “Pump Start” class will include configuring my insulin pump.
- If I will be able to start pumping saline during/immediately after the class.
- Who will be assisting me during the setup of my saline trial.
- If it’s my Tandem Rep, there’s no guarantee she will be available on or immediately after my class. Which is a problem since I’m not allowed to start saline until I’ve had the class.
- If it’s someone from the Education Center, that information has yet to be relayed to me.
- How soon I can get back to the Education Center after finishing my saline trial. Considering how long I have to wait for this initial appointment, I’m not confident I’ll be on insulin before the holidays.
- Why I was told differently prior to all of this coming down on me – if this was the process all along, fine, but I’m most frustrated by the miscommunication.
So now I wait for my appointment with the Education Center, which will include reviewing the information included in a patient health survey I had to fill out and mail to them. Which brings me to the purpose of this blog post.
Judging by some of the questions on this survey, I don’t think they’re ready for me, or the type of diabetes patient I represent. Hyper-connected, (hopefully) well-informed, self-sustaining, generally speaking in good health, and possessing a sound knowledge of my diabetes.
A number of questions had answer choices that made no sense. At some point I decided to put a checkmark next to answers I wrote in myself a la the classic “Maybe” on the elementary school Do You Like Me? Yes/No notes. I’ll elaborate for our collective amusement.
- Do you wear a pump? [ ] Yes [ ] No [x] Other Awaiting training
- How do you feel about having diabetes? It can be a bummer, but it’s how I met my fiancée, so I manage
- Does anybody help you take care of your diabetes? [ ] No [x] Yes (Why are these answers shifting the order of Yes/No?) Fiancée, Social Media
- What do you want to learn? …Lots of choices… [x] Other: Insulin pump training, as mandated
- Usual blood glucose before meals: Varies (Were they really expecting a number?)
- Usual blood glucose two hours after meals: Varies (See above)
- Have you ever had low blood glucose? [ ] Never [ ] When? Varies, where is the ‘Yes’ box?
- Can you feel when your glucose is too low? [ ] No [ ] Yes [x] Sometimes. Symptoms include sweats, panic
- I feel diabetes is one of the worst things that ever happened to me. [ ] Agree [ ] Neutral [x] Disagree
- I will have to or have given up many things because of my diabetes. [ ] Agree [ ] Neutral [x] Disagree ‘Many’ is extreme
- I believe following my diet is the best thing I can do to control my diabetes. [ ] Agree [x] Neutral [ ] Disagree Exercise helps too
- Describe any issues with current living situation: Small apartment, we want to get a big dog some day
- Your expectations of our diabetes program: Insulin pump with insulin
I know there’s a protocol for all this stuff for a reason. And while rouge insulin pumping might be an option for some of you, my eager-readers, I am choosing to work with the system on this one. I don’t want to risk going at this on my own, experiencing a medical emergency, and not having formal documentation of my insulin pump existing in my medical record. Yes, Dayle has been on a t:slim for a couple of months and I could ask her for help. Yes, I went to her training and could program my own pump settings right now if I wanted to. But #WeAreNotWaiting doesn’t apply to a new method of insulin delivery; at least in my world it doesn’t.
I’m going to figure all this out. And I’m going to start pumping insulin. Along with patience, the real challenge for me, however, will be minimizing visible frustrations with the process – as necessary as it is.
Since you made it this far, here’s a cat picture to send you on your way.
Have a nice weekend.