I really wanted to write down what it's like to go on an insulin pump for the first time while it's all still fresh in my mind, so that I have a good record and so I can share my experiences with others online. Although I've seen plenty of blogs written by pumpers, I haven't stumbled across many "pump start" posts that aren't kids on pumps - and I'm a T1D 25+ yrs!
Because there is so much to tell you all, and I am so very tired at present, I've decided to break the writing of this post into a couple of parts. So please follow along!
|As yet... still unnamed. Thoughts? "My Pump" is a little boring!|
My pump is a sparkly new pink Animas Vibe. Since I am in New Zealand, I was able to apply for - and have received - public funding for this pump valued at NZD $8000. The consumables ~$2000 p/year are also funded, and my first approval is valid for 9 months. I have to reapply after that and so long as I behave myself and show I am making improvements to my health and keeping my HbA1c below 60(?) mmol then I should be fine.
It took several months from the time I made the decision to email my endo and say "Hey, I want to go on a pump! Can you write my application letter?" to actually being approved, to organising meetings with the two pump reps and then coordinating with my Diabetes Nurse Educator to book in the pump start. Which was a bit of a struggle.
But I'm here now, and it's going superbly well. I am completely exhausted, these last 3 days have been incredibly intense, but I think it is going to be a GOOD THING for me :)
My thoughts before...When I first thought about getting a pump, about 10 years ago, I didn't know much about them. I was scared of the idea of being tethered to something all the time, and I figured that since they weren't funded (then), that I would just have to do my best to emulate a pump with injections. I tried this as best I could, by using Lantus and Humalog, and doing smaller doses throughout the day. I tried to emulate a combo/square bolus by splitting my bolus injection for large meals. I used two apps by FridayForward (I credit them with a 2% drop in my HbA1c) which I heartily recommend as they taught me about I:C ratios, ISF, and blood glucose targets. I last did diabetes education when I was 5. That is 26 years ago!! So I had just been coasting along, doing my thing, but not really keeping up with technology or best practice for diabetes management. So once I got the wake up call from my new Endo that what I thought was good control was in fact, quite erratic and full of fluctuations, I decided to do something about it. I am not sure that any diabetes management would work without that internal motivation, cos every method takes lots of work.
I found Kerri Sparling's blog, sixuntilme, and I pored over the archives there. Suddenly, an insulin pump seemed desirable again, and her writing and videos showed me how a confident successful woman could handle diabetes with conviction. I explored further, finding TuDiabetes and the massive collection of wonderful diabetics online who are all asking questions, sharing, and teaching. My diabetes education was online, it was self-taught, and it was at my own pace. If I saw people talking about "IOB" in a post, I would take initiative and go find out what it was, then see if I could apply that to my own situation with MDI. Gradually, I found the online support network that I had been missing during my teens. I did not knowingly encounter another T1D after I attended my last diabetic camp at about age 12, and I didn't stay in contact with any of the kids as I was too young to realise how important they might be to me later. I felt that diabetes was my thing, it was personal to me, and it made me special. I was the only one who had it. Very surprisingly, I never had any real rebellion against diabetes and my self-management. I just had a whole lot of very out-dated learning that I still trusted in, and being reluctant to change, my new Endo and Diabetes Nurse Educator (DNE) had a bit of a battle convincing me otherwise.
In more recent years, I have been much more vocal about my diabetes. I have become more confident as a person; I graduated, got a job, was made redundant, found a wonderful new job, I broke my back twice, I got married, we decided to start a family, I have teenage step-kids, I started blogging and sharing my story about T1D and infertility. Lot's of stuff, you know: life.
My Endo saw the work I was doing, but would always tell me he had no ideas about what was causing my horrendous fluctuations in blood glucose levels. I was testing 8+ times per day, on a split dose of Lantus (9am, 8pm) with 5+ Humalog injections (I:C 1:8am, 1:10lunch, 1:12dinner, 1:14supper). He wrote me blood tests for everything under the sun, trying to find the magical missing element which was causing all the trouble. But we never found anything.
|This. OMG. Go get some and put it in your mouthparts NOW!|
In the lead up to the pump start day, I was tense and nervous and pretty useless: I had trouble concentrating, I was getting itchy excema on my back, and my face was trying it's best to break-out. I may have eaten a whole lot of comfort chocolate. Although my logical brain knew that there would be nurses and doctors and husbands to look after me, I was terrified of...something. Most of the time I was ludicrously happy that I was finally going to get to try a pump. And stupendously ridiculously deliriously happy that I was getting a CGM (bought by my wonderful Dad xox). I tried to articulate this strange dichotomy of feelings to my husband, my friend at work, and my Mum, but I could never get them to understand how I felt.
Since we are about to start our first round of IVF in October (less than a month, now), I had this added pressure to have the pump work well. The whole reason and motivation for actually getting off my arse and doing this work to switch to the pump was to prepare for any potential pregnancy. A diabetic friend of mine had been on MDI and when she finally got pregnant and wanted to go on the pump, she was too sick to do so. I knew I had to get this show on the road. And what's more, it seemed that the pump and CGM was waaaaaaaay more complex than the IVF stuff. There, the fertility doctors are in control (kind of). They decide the dosages and everything has a fixed time span. But with the pump I knew I would be doing 2 days training then be trying to do it on my own. It seemed like a much more mammoth task than contemplating IVF. I guess it's just due to the fact that I can be a control freak, and the thought of being out of control with my diabetes didn't exactly give me warm fuzzies.
So, I spent the time organising things. This was partly purely practical, to be ready. But also to fill my time and stop my stupid brain from going into a nervous meltdown of anxiety. Which I did at least twice.
A diabetic from the South Island (Hi S!) made contact with me via email, and it was wonderful to have someone experiencing the same things. I also watched a lot of videos about inserting sites, changing cartridges, and most important: where to wear the pump!? Two nights before pump start I royally freaked out about that, since I decided I only had one pair of pants that would be strong enough to support the weight of the pump. I wear a lot of dresses, and after watching some videos by Candace from Sweetful Stuff and Diabetic Danica, I took action and planned what I could do with my wardrobe.
I spent a lot of time thinking about how it would feel to wear a pump. Would it hurt? Would I be able to do things? What would it be like to shower with things stuck to me? I had these questions so I read forums and blogs to get answers. I stuck a band-aid to my tummy for a couple of days to gauge what it might feel like, and when I did an injection with my pen, I held the needle under the surface (quite still) for half a minute and decided that I couldn't actually feel it at all. Only the sharp bit hurts as it goes through the nerves at the surface of the skin. Ok, it should be fine, I decided.
|An impressive big box of stuff. Note: always take the time to look like a suspicious patient and CHECK the box against the script! Bits were missing causing 2 additional pharmacy trips :/|
|Animas Vibe with cartridges back left and Inset 30 infusion sites and lines back right.|
My pump arrived, and the consumables. The folks at my pharmacy had never processed a pump script before so they were really intrigued by it all. I think that pharmacy became my second home this week! lol :P Then my Dad bought the CGM and that arrived. Soon I had boxes and boxes of stuff covering the lounge room floor. I had read some of the Animas manual online, so decided not to freak myself out by reading the printed one prior to the training. The Dexcom came with a DVD, so I took it round to my parents place and Dad and I watched it together. It was quite tedious, but later I found it so useful as preparation.
Being in contact with my pump rep and asking questions was really helpful, and she made me feel a lot calmer about things, like I would be supported throughout.
Oh, and I had a birthday in amongst all that too!
|From my Sweet Husband! Aww!|