It occurred to me today that I’ve only ever physically met two other people who wear an insulin pump! The first was a young man who was visiting Byron Bay and who showed me how his pump operated, not long before I got mine. His demo was a great experience for me. The second person was my Animas pump-start rep.

Now that I’ve moved to a more populated area, I’m hoping I’ll meet more pump users. While the Diabetes online community (DOC) is teaming with pump users, and I’ve come to know many of them over the past couple of years, talking face-to-face with others seems to be quite a different experience.

I was a bit worried about getting a new Diabetes Educator up here. I’ve known about one DE who is in private practice in this area. I wasn’t sure I could afford appointments with her, but since I’ve made further enquiries, it seems I can. I’m really excited to be seeing Deb Foskett from Insulin Pump Angels. She not only comes highly recommended but has won awards as a DE. I’m not sure when I’ll be seeing her yet, because I need to get some referrals from my family dcotor, but I’m hoping it will be soon.

So that’s one worry about being in a new area, organised and solved!

I’ve also had an endo recommended to me, so I’ll give him a go too. Apparently appointments take a while. No problem – I’m not so eager to see an endo right now.

Being up here has played some havoc with my diabetes. I have no idea why. I’ve had to increase my basal by a quarter of a unit for about three quarters of the day! Yet, I seem to be more active here! I’m still going to have to tweak the basal a tad. It’s not quite right yet.

I’ve been in the pool nearly every day, and I’m still working out how to avoid higher BGs when I get out, despite exercising in the pool. I must say that with all my aches and pains, I’m feeling ever so comfortable swimming and floating around weightless and cool. It’s hot here – so far, not as hot as it can get, but hot enough. (Read: too hot for me.) The pool is a godsend!

The winters here, like Byron Bay, will be glorious! Few more months before that though.

Annoyingly, I’m getting raised BGs after some very low-to-moderate exercise in the pool. Really, there’s hardly any effort at all in 30 minutes of swimming, floating and walking in the pool.

What usually happens to me is that the first lot of increased activity for the day raises my BG and the second lot (if there is one) lowers it.

I’ve not yet experienced this amount of swimming on a pump, so it’s an experiment in itself to see how I’m going to manage it. So far, I’ve only been in the pool once per day. It’s such a hassle to peel off that miracle suit (which doesn’t work because I still look like a beached whale), shower the salt water off (yes, it’s a salt water pool) and then wait for the swimsuit to dry again before wriggling and struggling my way back into it. A second swim will have to wait for a second swimsuit! Those suits are hard enough to get on when they’re the right size. I think mine is one size too small! Maybe time for two new ones?

I’ve tried eating a small amount of carb before I get in the pool, taking a bolus and then taking my pump off for the 30 minutes. It didn’t work so well. I’ve tried doing nothing. That didn’t work well either. Next experiment is just a small bolus without any carb. Two hours after swimming, I’m still not going any lower and I always have to bolus.

I’ve only just ordered replacement parts for my Animas that will ensure it is waterproof. They should arrive in the next couple of days, so I’m not worried about managing all this without the pump on for the swim-time. I will pay closer attention when I get the parts and I can wear the pump while swimming. That will mean no break in basal insulin and I’ll get a better idea of what my BGs are doing both in the pool and a couple of hours later.

I haven’t gone anywhere near the gym yet (which is right next to the pool). I’m hot and sweaty enough and that gym looks like pure torture! I’ll leave the gym to the cooler days/months.

A change in lifestyle often means a change in insulin regimes and a learning curve to figure out what’s right. That’s on top of seasonal changes in insulin needs. I’m hoping that Deb (the new DE) can give me some help as well.

Dr Bernstein of low-carb for diabetes fame is anti insulin pumps. Actually, what he says is that he ‘doesn’t recommend’ pumps. He states his reasons in many interviews. Just one example from here:

Many of the female patients seemed to have wings on their sides where the pump tubing was inserted and they got lipohypertrophy. But that was the least of it. None of them had normal blood sugars. Of the new patients who came in using pumps, there was only one whom I was able to get near normal blood sugars. It was because he was still in his honeymoon period. After a year on the pump, his blood sugar started getting unpredictable. And why is that? I believe it is because of the scar tissue that forms where you have a foreign body inserted for days at a time.

First, from Wikipedia:

Lipohypertrophy^[1] is a medical term that refers to a lump under the skin caused by accumulation of extra fat at the site of many subcutaneous injections of insulin. It may be unsightly, mildly painful, and may change the timing or completeness of insulin action. It is a common, minor, chronic complication of diabetes mellitus.

Here’s my response, directly to Dr Bernstein:

Much as I’m a low and lower-carb fan and I respect the logic behind your low-carb theories, I’m very pro-pump.

That stated, I read many blogs and forums and I don’t know anyone whose A1C hasn’t improved, or their diabetes has become more unstable on a pump – provided they’ve had the right education and continue to tweak their insulin until it’s right for them. Lack of proper pump education can be the cause, as can many other factors (eg insulin allergy) that can be investigated and dealt with. True, I don’t know everyone in the diabetes world, but the majority of what I read and hear doesn’t bear out your statement.

Scar tissue? Sure if you keep putting the inset in the same place and leaving it there longer than is recommended.

On the other hand, I can show you the huge, deep, very-slowly-fading bruise I still have 18 MONTHS after stopping Levemir! I was told to inject NovoRapid on one side and Levemir on the other. For now I’ve lost that area on my belly for my pump cannula because it’s as unreliable as I could ever imagine! All my pump occlusions have occurred in that area. I dare say there’s also some lipohypertrophy in that area.

One can get lipohypertrophy on injections too!

The body has plenty of areas to insert a pump cannula before there’s no place left because of hard, fatty deposits, if indeed you get them at all. If you really run out, you’ve been pumping for an awfully long time. In addition, the possibility of  lipohypertrophy is reduced if you change your site within the recommended time. Some seem more prone to these fatty deposits than others.

And really, do you think, Dr Bernstein, that in 10 or 15 years time, we will still be using the same insulin pump technology?  Surely not with current advances! But maybe we will. Who knows?

I don’t see a whole lot of people scrambling to get off insulin pumps because their blood sugars haven’t improved and stay improved. Sure, people do go back to MDI or take a break, but mostly for other reasons, as far as I can tell.

My own experience of moving from MDI to an insulin pump saw a 3 % point decrease in A1C by the first test after! It was the very best thing I’ve ever done for my health. My A1c is still improving as I tweak what I do with my pump ! How does that in anyway reflect unstable blood sugars or ones that don’t approach normal?

Actually, your idea of normal seems a tad narrow. Research shows when the damage from diabetes happens, and it’s certainly still within the higher range of blood sugar recommendations for people with diabetes, but above what you recommend. So, neither recommendation is necessarily right.

In this age of people being interested and involved with food, cooking, lifestyle programs, good restaurants, farmers markets, recipes, entertaining and so on, some of us simply can’t always do the 30 grams of carbs a day you recommend. Some of us also don’t want to. Some of us do mostly low-carb and everything in between. But we’re still achieving good A1Cs and we’re avoiding those damaging blood glucose spikes.

I’m not saying low-carb and injections don’t work, but for me, some days I do want to have an occasional piece of cake or pizza, or a slice of that new sourdough bread that everyone’s raving about, and my pump allows me to do that with extended boluses and calculations that I was so sick of doing in my head when on MDI and often getting nowhere even on low-carb.

Pumps are also great for people with gastroparesis, particularly with the ability to do extended boluses. Yes, I know you can achieve similar with longer acting insulin injections. Why bother?

I don’t want to continually draw attention to myself in restaurants with friends by having a 15 minute conversation with a server about what he or she can and can’t bring me to eat. I don’t want to live my life like that and I don’t want my friends to be subjected to that conversation ad nauseum. I just want to order the lowest carb thing I can find on the menu and if that ends up being way over a particular carb allowance, so be it. I yank out my pump, enter an extended bolus and I’m done. No bringing out shots or insulin pens and being looked at like I’m a drug addict. Not that I ever much cared about that, but it’s an issue for many from what I hear.

Sometimes my friends want to dine where almost everything on the menu is carb-laiden, or I’m invited someplace where there’s little that is low-carb. Do I have to stay home? How would I manage that with injections? Pull out a syringe every half an hour? Or maybe I just shouldn’t eat? Yes, people do manage on injections, but I say I have better and far easier control with a pump AND I have the quality of life I want. I can and do participate in social meals as a nearly normal person. That’s priceless!

I have another autoimmune disease that sometimes plays havoc with my blood sugars. Do I really have to manage that with injection boluses or an increase of a 12-24 hour  basal when I can’t predict when it will stop? With a pump, I have minute-by-minute control of basals. I increase for a couple of hours at a time, test every hour or two, to see what’s happening and I’m done.

In conclusion, I would much rather have 10 years of far better A1Cs than I had on shots, and be more easily able to sometimes live outside the low-carb regime than not. And I would much rather and more easily achieve that with an insulin pump than with injections. If someday I have to go back to injections, because of lipohypertrophy or because my BGs have become unstable because of a pump, then I’ve still had 10 or 15 years of doing much less collateral damage from diabetes in a far more convenient way.

Again, I’m not saying your “normal” blood sugars can’t be achieved with diet and insulin injections, but why bother when most insulin pump users will probably tell you it’s so much easier with a pump?

If you think that all pump users have unstable blood sugars or that their A1Cs are not more normal than they were on MDI, you’ve been hanging around in the wrong places!

With the greatest of respect for what you’ve done to help people better control their blood sugars (me included), I’ll wear my pump and have better A1cs until the last place I can wear it is on my big toe! I dare say that most people using a pump would agree.

I won’t tell you all of the ugly story of the terrorist who tried for 2 hours to anaesthetise my arm last Thursday. Injections given by someone else with a huge needle are never good. For a needle-phobic, it’s torture. And yes, giving myself insulin was never a problem after the first one.

Leaving me on a gurney for 2 hours waiting to see if anything was going to have any effect, was horrible! I react badly to midazolam, so I refuse to have it. Instead, I go into my hand ops with some Xanax (that I take about twice a year, if that) plus regional anaesthesia. I’ve had regionals not fully work before but never as “not fully” as this time. It was more like, “hardly worked”.

Footling about with anaesthetic injections into my upper-chest/shoulder, and using a nerve probe “thingy” as well, just wasn’t something I want to go through again anytime soon. No thanks! Then having a go at the tender, inside part of my wrist with that monstrous needle… well, it was all I could do not to punch him. I did swear though… several times… in no uncertain terms, despite being rather off my tree on the Xanax.

So after the surgeon ended up injecting local into a very partially anaesthetised hand (another huge ouch), things started looking up. The two tendon-releases could begin. His jokes helped too. I was quite awake through the whole thing (half hour surgery) because by that time most of the Xanax I’d taken at 2pm, had mostly worn off by 5:45pm when the surgery finally started. The pressure cuff on my supposedly anaesthetised arm never has never bothered me, and it didn’t this time either.

My blood sugars were taken about every hour. They looked good! More about that further on.

The op went well and I went home with a numb hand, a partially numb arm and bandaged hand in a sling that was threatening to slice my neck open! What are those flimsy paper slings anyway? Can’t hospitals afford proper slings?

Soon as I got home, I reefed out the sling I’ve used for the last 3 ops – a lovely padded strap sling, complete with purple ribbons I’d attached to hide the two ugly joins. Ahhhh… comfort!

It took until the wee hours of the next morning for my arm to get any feeling back and well into the following day (Saturday) before I got some feeling back in the middle finger.

Oh boy, that first day… after a couple of restless hours of sleep… out came the pain meds they gave me at the hospital. I’d forgotten I don’t react well to codeine, so the next doses were just over the counter pain meds, which sort of did the job. By the following day, I took nothing. Didn’t need to.

Today, 5 days later, despite stitches in both incisions on my palm, I’m typing with just a little discomfort! I’ve almost got the middle finger straightened, although it is still quite swollen. The little finger is fine. The palm is still painful, but better every day. Plus I’m itching a bit, but not as much as usual. The surgeon changed the stitches after eliminating everything else over the last few ops.

Apparently there was tons of fluid in the middle finger, which probably accounts for inflammation pain, which I already had, on top of post-op pain, so that’s understandable.

Stitches come out on the 7th and despite pain if I move my hand where it shouldn’t be at this stage, and eye-watering pain if my fingers get caught on something, I can say that in a day or two, the pain before the op was much worse.

I’m also really happy to report that thanks to my insulin pump, through 6 hours of fasting beforehand, and the 4.5 hours I was at the day surgery unti until I got a post-op snack, my blood glucose stayed between 5.2 mmol/L and 6.2 mmol/L (93 mg/dl and 111 mg/dl) for the whole time! I made no adjustments to my pump during that time. Great basal test!

I’m somewhat surprised that my BG didn’t surge during the stressful anaesthetic antics. Just the smallest bit of stress usually has an effect.

Despite my initial misadventures, the outcome is as expected. In a week or two, I will have zero pain and the problem will have been fixed yet again, by the very skilled surgeon I go to. Thanks Dr M!