I thought i was going to start insulin today. but nope, I didn’t have my logs! ARG! Well 2 hours of info thrown out at you and the log was in the back of the booklet they gave us. If they did a separate packet with logs, etc, that would’ve of helped me remember. So the DE I saw today wouldn’t start me on insulin. So I have this big (enter swear word here) binder with sheets that I am suppose to have. I have to do two different sheets till March 3rd. Yes I have to wait till march 3rd! So all of my appts are cancelled and will be delayed even more. Ugh so instead of fully being on my own on March 11th, it will be later. I have to carry this stupid binder with me. What a PITA!
I am so mad right now. I got my script for the vials yesterday so i was ready. I also didn’t do my lantus this morning as that is what my instructions were. so my sugar levels this morning was at 322 as again I was instructed not to do the lantus. So Shots till March 3rd…I can’t take the bruising anymore, etc. I was really excited to be doing the pump fully. I am really hating this disease even more. I also learned that I dont have to bolus for the entire meal. If I am not sure how much I’ll be eating, I can figure out the whole meal’s insulin rate then do half just in case I dont finish. Then do the rest after I eat. I wished I learned this from the beginning as that would’ve of saved me LOTS of lows over the years.
I just really want to just scream, swear, etc. My pumping experience far is a mix bag.
the CGM log wont tell them anything. Plus the sensors didn’t arrive as my ins is still auth them. I was going to tape the current sensor but while I was sleeping Friday night it wiggled its way off. The charger was at my house and I was at another place so I couldn’t charge the receiver.
I not only had to do the same thing, I also had to demonstrate I could get my levels down with shots, over ONE MONTH. What? That was the whole point of getting the pump, I assumed, to improve my levels. I thought it was the most bizarre logic I’d ever heard… back then.
Anyway, I just had to shut my mouth and do what they asked. I was furious at the time, but now I understand why they did it that way (not all pump-starts happen that way here). At the time, it didn’t help my mood one iota. I didn’t even see my pump until the day I started (that’s how it works in Australia - the pump goes to the DE or the pump start trainer).
The incredible effort I made back then in that one month, has helped me enormously. I also had time to read Pumping Insulin, trawl the internet every night and more. And yeah I did get my levels down to what they wanted - that was really hard work too.
I was on such overload by the time my pump-start day came around, that when the trainer was taken ill and taken to hospital in the middle of our session, I’d only had a really short time with her. I was concerned for her but at the same time, my heart sank thinking I’d have to wait another month. After lunch, the DE and I visited the trainer in hospital, and the trainer said I didn’t need much more training because of what I already knew, and got me started then and there.
That doesn’t mean that the following months weren’t also full of learning and tweaking, but the more I knew to begin with, the less daunting it all was.
In a year’s time, all this will be of little consequence.
I hope you love your pump as much as I love mine! It was the best thing that ever happened for my health!
Breathe Amy! You have no choice but to follow their instructions, no matter how odd and frustrating you think they are. I had to jump through that hoop for a month! Venting helped me too, as I hope it’s helping you!
It’s now 20 months later and I rarely think about that time other than to appreciate all the things I learned back then, and to fully appreciate and love the incredible piece of technology sitting on my waist 24/7.
I have an Animas 2020 (no Ping here yet), and I jumped in a pool with it for the first time a couple of weeks ago (they say the first time is the hardest to trust that it’s really waterproof). I swim with it nearly every day now.
What you’re going through now really is frustrating, I know.
Does this person have diabetes? If not I do not think you can chalk this up to anything more than a power trip and a serious grab for money. I personally do not feel most people need saline if they are taught right and have very frequent f/u at the office for the first little bit with the educator available by phone for any questions. All I can say is I am really sorry for your frustrations. When I got my first pump the only reason I didn’t start it myself was my wife. What I had programmed into the pump was far closer than what the educator that started me programmed as far as basal rates etc.
So what do these “logs” consist of? Can’t you just download your meter for their review?
I think if I was in your position I would play their little game until you are on the pump and then be going elsewhere for my care. Once you are trained on the pump they have no hold over whether or not you can have the pump (unless you continue your care at their clinic) so don’t let them bully you into thinking so. I would be willing to drive 6 hours away to see someone else than to have to deal with that b.s.
Seriously? My trainer has T1 and our diabetes services are free. So for sure my delay wasn’t for that reason.
They wanted to know how I handle shots with daily numbers, trends and so on - not just an A1C. Carb counting, correcting highs, how many lows, etc, so they knew what they had to teach me on a pump and knew what my different basal settings should be - When do I usually go high? When am I ok. When do I go low? Am I correcting meals properly. My basals were pretty good from the get-go because they knew quite a bit from my food and insulin logs for the month before. We don’t start on saline here, so we do training and pump-start all in one.
I’m sure Amy’s people have their reasons with her best interests at heart. I wasn’t there so I don’t know exactly their thinking - I can only relate my experience of pretty much the same thing.
So I can go into the pool with it??? I like walking around the shallow end. I dont swim well. I do the same in a hot tub only because it helps my ankles and my legs. What about showering? Do I have to disconnect in the shower or can i test it in there
The manual says not to take the pump in very hot water, Amy, so I would disconnect before going in a hot tub. I take very hot baths as well (wishing it was a hot tub!) and I always disconnect and put the little plastic thingie in, it’s pretty easy to do and the amount of time I’m off the pump is negligible.
Though I don’t think I’d be that gracious about Amy’s people from what I have heard, I absolutely agree with you Susi that all those things are important. In my 6 weeks on the pump I’ve really “gotten” that it doesn’t do all the work for me. Remember the old computer geek saying, “garbage in, garbage out”? It really takes all the skills we gained on MDI to successfully use the pump. If I didn’t automatically keep a logbook of what I ate, carbs, boluses, basals and corrections, how would I know what works and what doesn’t.? I’m tweaking my basal numbers now and when I look at the highs (highlighted yellow) and the lows (highlighted blue) I can see the patterns jump out at me of what time of days need more or less insulin. It’s pretty cool actually. I’m not being managed by a doctor or CDE, so I keep the numbers for myself.
Seriously what? Everything I wrote I was serious about.
While I have no doubt that the process helped you as you state, because this was Amy’s origional post I was responding to Amy’s situation.
Amy has already stated she has an I:C ratio that works pretty well for her. Amy has stated the proper way to calculate her correction dose. Amy has been using the Ping sysytem with Saline so she already had info about the amount of carbs she is eating and the response from them, her pre-meal blood sugar etc. Seems to me that Amy had all the information they were looking for. To not train her on the date that was agreed upon simply because her information wasn’t on the form THEY prefer is ridiculous. There are many different ways to go about doing something. For the educator to assume she has to follow their exact formula is just too much for me. Amy is twice as prepared as 90% of people that I put on pumps and I don’t see too many major concerns with their knowledge, safety etc after 3 days when I f/u with them (again if the concerns do come up then I make myself available).
I do not think this is the way to do it for EVERYONE but even spending a few minutes on an online forum reading her comments she is obviously an individual that is highly motivated to get the most from her pump as possible. This, in my opinion, the strongest predictor of a successful pump patient- not that she used the form I prefer to log all of her info.
Some people find that writing it down is what works best for them and you should continue this way if that is the case.
I myself am far too lazy to go to all of this trouble. The One Touch Software (I think it is better than the Animas software) can be an incerdibly effective tool to get the same information.
Yes, I had mentioned before that I assume some people accomplish the same thing by using software, but that is still out of my comfort zone. (I’m learning new software currently in another pursuit and so I’m at my technology quota right now…lol… and haven’t even opened the box of my Animas EZManager).
Whatever works, as long as someone is able to see patterns and make changes based on those patterns.
I’m not impressed either with Joslin and their micromanaging techniques, and definitely understand Amy’s frustration. On the other hand maybe they have valid concerns and it wasn’t just about “forms”. I wasn’t there, so don’t really know.
I’m fiercely independent (obvious, I know…lol) and pooh-poohed the saline start but didn’t fight it as it was only five days, but then I was glad I did because it gave me time to learn the pump and meter and program in settings. Not to mention how to insert sets, because I’m not good at hand/eye stuff. All before being dependent on the insulin which raises the ante. I also didn’t have all the follow up MossDog mentions, but other than two trainer visits did it on my own, so I liked having time to take in different aspects of the learning curve
But bottom line, we’re all different with different needs. I feel my Animas personnel and definitely my doctor are responsive to that and it doesn’t sound like Joslin is. I agree, jump through their hoops and try and use the time to good purpose and then move on, Amy, like you mentioned when you get other insurance coverage. Don’t let it get you down or reduce that wonderful enthusiasm you started out this journey with!
Wow Amy I’m sorry. That bites. I’m sorry Joslin is being difficult. When all is said and done if I was in your shoes I’d make a complaint to Joslin’s patient services regarding this whole process. At the very least they should have communicated their expectations regarding the logs more clearly. What kind of accommodations are they providing for your hearing impairment? Is this a group class? This all sounds very cookie cutter to me which means they’ve probably dropped the ball in terms of not enough individualized care and inadequate accommodations for those with hearing or vision problems or mobility issues.
I agree, Diana. I really liked the one on one of my trainer who came to my house and worked with me to get me started. I would have been frustrated in a class. Some things I learn very quickly compared to other people, some things much more slowly. So I would be inpatient at some points and feeling pressured at others. I have taken Spanish classes 1:1 for quite awhile and it seems such a natural way to learn! My teacher aims everything she says to my level and what I know and need to practice, even when we’re just chatting. Only problem with that is I think I’m more fluent than I am because I understand everything Carolina says…lol
But back to insulin pumps, I couldn’t imagine being in a class with someone who let’s say was newly diagnosed and didn’t know things like I:C ratios, correcting, etc.
I can understand if the patient is just diagnosed and is being put on the pump for them to want the pt to be safe but for someone who has been at it for so many years and want to switch to the pump, my god
@MossDog - you know, when you put it that way, you’re probably right, but at the end of the day, Amy has to just suck it up.
Almost always in those situations, they have their protocol, and we weren’t there to hear the reasons or ask questions. They surely don’t have time to troll the internet to find Amy’s responses, so it’s a one trip fits all, I guess.
My trainer was a lot more flexible when it came to pump-start day and her being taken ill. She DID take into account my prior knowledge. Had she not, I’d have had to wait another month until she had time to fly up from the nearest capital city.
I also didn’t realise that you are a pump-start person and that you had been supporting Amy that way, even from afar, it’s worth its weight in gold, I’m sure.
Amy we have situations here where kids go straight from diagnosis to pump - same day, insulin in, no saline. Later they are taken off on random days to be taught MDI.
