Thanks…I couldn’t remember
my CDE doesn’t have Diabetes but did get to wear the pumps to see what its like.
their key word apparently is Safe…I have been at this for 4 years with numerous bruising, etc. I wanted to switch to the pump to make my life easier and to not have bruising that much and enjoy life but Joslin is making it harder for me apparently.
I have a busy life that I can’t always write down everything! I do it if they need the info but other than that, I’m running around with my head cut off half the time (long story as to why). So I am frustrated.
I am still getting familier with the software. I am still filling up the food database! I have yet to figure out how to use the other stuff as I am taking it slow with the software as it is a but smaller on my screen as its a 10 inch screen so I am still figuring things out
I hear that it’s hard for you, Amy, but the first month or two on the pump really takes a lot of tweaking of numbers whether you do it with your team or on your own. I know some of us like to write things down and others print out the numbers from the software, but you do need to keep and use numbers somehow, not for Joslin but for you. I think anyone on a pump will agree that it DOES make your life easier but that it takes a fair amount of work at the start.
I would try mentioning your frustrations with your Dr. Perhaps you can make this process a bit smoother for those coming in behind you.
I would assert their way is not “safe. I say this because” I think the frustration associated with this “process” could potentially make people decide they will not wait and start the pump on their own. Their pt’s could surely pretend they did not do this when they are finally “allowed” to start their pump and get their formal training.
I went to J&J’s (parent company of Animas) class they do for medical professionals and they put everyone on pumps so they can see what it is like. The comments I heard educators make when they took the pump off reinforced to me that, although better than nothing, this is a poor substitute for a PWD true experience of diabetes in general and pumping specifically. They actually took us out to dinner. I was apalled at how cavalier even the RD’s were at guessing their carb count for the meal. There was one other person there that had DM and was on a pump. Everytime there was a “guess” at the carb content we were within 5 grams of each other. You would be suprised at how far most overestimated the counts. I was vindicated that night when I took my blood sugar and was at 95mg/dl and told them all the next day they would have been dealing with some significant lows 
Too bad they couldn’t have actually experienced a low!
Don’t get me wrong I am not bashing CDE’s (obviously I am one) at all. I just wish sometimes some of them would try to apply a little more understanding to each different situation and the individual person who is in that situation. I realize I was not there to ask questions about the protocol they employ and they obviously don’t have time to be reading your comments on this forum BUT it only takes a minute at most to assess someones basic understanding of MDI and the overiding theory of pump therapy. After that it is programming and setting up expirements to see how your different settings are working for you and I can’t see how you waiting is going to help that process. If anything they are going to make you despise what we all periodically need to do to make sure everything is working right- log/download and assess.
Anyways I will get off the old soapbox. I wish I lived closer so I could someway help (I love training patients like you!). I am similar to you- when I have it in my hands I don’t want to wait!!! I know how excrutiating that wait can be especially when the reason you have to wait does not make a whole lot of sense. But as Susie said, in three months this whole process will just be an afterthought.
Agree totally. I know you like to write it down Zoe and I think it is a good way to do it.
Guess the way I figure it is I have ALREADY logged it all straight into my pump! I admit that computer software comes fairly easy to me but I think this is another thing the educator should be providing- a basic understanding of the download software.
Agree with your whole post.
I think putting someone directly on a pump at Dx is a fine way to do it. I can’t see where pump therapy is anymore dangerous than MDI if they are taught right.
In other threads you’ve mentioned you have trouble hearing on the phone, right? So they scheduled you for pump training without specifically discussing with you what your needs are hearing wise? Both the nurse and the patient in me is absolutely appalled. That’s horrible. What if this had been settings for your pump start with insulin? Or if you need to call in blood sugars after pump start when things can get crazy? At my pump start we did a lot of adjustments between appointments by phone. How can they not discuss this with you?
You obviously are motivated as MossDog noted earlier, and you’re prepared. There’s no way you’d willfully blow the logs off either even if you didn’t agree with them. Even if the log stuff has nothing to do with your hearing they still should be making accommodations. It wouldn’t be at all unreasonable to ask for them.
I hope you don’t mind if I make a couple of suggestions for you to consider for next week. I’d ask for all of your instructions for insulin pump start in writing. Hopefully they’ll be doing that for everyone but after what I’ve heard here who knows. I’d also ask them about how best to communicate with them between appts if you’re not able to hear well on the phone. Can they email you stuff like this rather than call? Some places won’t because of HIPPA. Also if there’s a possibility that someone else might be taking a phone message for you it’s possible you’ll have to sign a release at Joslin before they’ll even talk to them. I found that one out the hard way once my daughter turned 18. She had to sign releases everywhere so we could help with appts, take messages, pay the bills yada yada.
Good luck next week. I hope it goes well.
There’s absolutely nothing like a DE or Trainer with T1. I just seems to work so much better on so many levels.
That’s not to say that non-T1 DEs and trainers can’t be fantastic, but I know I gained so much more because my trainer also wears a pump.
MossDog, it’s always fascinating to hear things from over the fence and yet you’re one of us. Thanks!
I’m all for a paperless method, then again, as an IT Consultant, that’s what I do anyway. The software is a tad lacking (in this day and age), but it’s ok-ish to see trends and pinpoint problems.
Celebrate our differences!
Oh Amy, the bruising! I only had it from Levemir, not from NovoRapid (Novolog) and it’s taken about 20 months for it to fade. I still have about a 1 inch square spot left that is just about to completely fade away.
I tried everything, from Arnica cream for months, to massage. The sucker, which was one huge joined up bunch of bruises, wouldn’t budge for the first year!!! Imagine what kind of bruise that was!
You seem so very motivated to go on the pump and so excited. I sure remember that feeling. You’re going to love it. You might hate it once in a while when you can’t figure out what’s going wrong, but as long as you know it’ll happen from time to time, you won’t be surprised.
I moved to another state recently and all my basals were suddenly out of whack. Climate is no different, I’m in the same kind of house with the same number of stairs. Activity the same. Diet the same. I didn’t have a new DE, so I figured it out on my own and they’re back to being perfect again. Still don’t know why it happened, but that’s just it… sometimes you can’t.
I also started going high in the mornings a few weeks in. The new DE kept talking about Dawn Phenomenon. Eventually I figured out I was actually going low while sleeping and I was getting glucose dumped from my liver. Fixed it by pulling back the basal about 2 hours before, NOT increasing them as I was told to do.
A wonderful doctor once told me - you know your body better than anyone. You also know enough to know that if someone tells you to do something and it doesn’t feel or sound right, you’ll ask lots of questions first.
So, now I have two things I live by with my pump (the second of which my trainer told me). I trust myself and I trust my pump.
Mentioning the frustrations actually wont help. He was on board with me being on the pump back in November then a month later changed his mind. It took me SEVERAL months to push for the pump as MDI ISN’T working anymore. And now they are back at square one with “we dont think you are ready” type thing. my CDE didnt even look at the log that was printed from the pump. I used the pump and the meter for the info. And yet, she didnt even look at that. They want to keep me safe but having my sugar levels go all over the place ISN’T SAFE!!! I have complained tons of times about Joslin on here and my frustrations. There is one person on here who completely understands why Joslin is the way they are and hate them as well. And another thing is NO ONE told me that my dr changed his mind. Here I was sitting and waiting for the paperwork for a WHOLE MONTH for the pump. And it took an extra month just to get it and to voice my complaints about MDI and how I have the time NOW to learn about it vs later on. And yet they wanted to wait until later on when I knew I would not have that time frame to commit which meant being on MDI longer. .
When I was first diagnosed the very first thing that they taught me was Carb counting. I have so many packets, papers, etc on carb counting alone. I have gotten that down pat from day one. Well, at first it took me a bit to understand it and to be sure I have it. But at Joslin they treat you as if you dont get carb counting and I kept telling them that I do. I think that RDs and CDEs need to learn the same crap as we do and ACTUALLY do it. Maybe they’ll understand what its like to be in our shoes and see what we have to put up with and why we want to do that instead of this, et. I applaud those who are a RD and a CDE that are diabetics. They get it.
I have email addresses for 2 of my CDEs. I can email them if need be. they know I am hearing impaired. I know all about HIPPA, I am in the medical field myself :)…I even have the email address to the pump coordinator as well. I even have the email address to my animas rep although she said if I have tech issues for me to call the tech support. Which means the boyfriend would have to call for me.
I get the bruising from the Lantus and the Humalog. It takes forever to go away and avoid that area to give myself a shot. I run out of places to do shots as the bruises are still there.
I do know my body better than anyone. I am very in tune with it more than i should. I am not sure its because I am in the medical field (or trying to get back into it).
ok that’s good. I’m glad they didn’t leave you high and dry in this regard.
My goodness they really do make people jump through hoops don’t they. Must be frustrating.