I'm off the pump

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I'm off the pump

Postby George » Fri Mar 24, 2006 8:06 pm

For a variety of reasons I'm taking long service leave from my pump. I am currently trialing Levemir for a few months and will say more about that as I figure it all out. I am curious to hear from anyone that is on both a pump and Levemir/Lantus.

I know there are a few people out there that switch between the two - one guy is on pump overnight and Levemir during the day. Anyone else do something like this? If so would love to hear from you either on the forum or if you'd prefer george@realitycheck.org.au
Last edited by George on Tue Mar 28, 2006 7:51 pm, edited 1 time in total.
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Postby vicky » Sat Mar 25, 2006 12:02 am

Hi George,
No personal experience but I think I've read various stuff about this on www.diabetes123.com. Do you mean the so-called "untethered regime"? I can see the appeal re: flexibility if for example you wanted to use pump during week and not at weekends... can't quite see the rationale with injections through the day and pump at night, other than to help deal with any dawn effect. I know I'm a total pump newbie full of the joys of spring with it but it would seem a shame to not have that same flexibility during the day....

Vicky
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Postby Spike » Sat Mar 25, 2006 12:45 am

well george best of luck, i'm just thinking it will be like starting all over again, i'm not sure i could face that!!

best of luck and report back, especial intrested in how the dosing regime changes in terms of basal and bolous ratio's, my head hurts just trying to remember what i was doing on injections.
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Postby vicky » Sat Mar 25, 2006 2:06 am

ah-ha - found the bit I'd seen about this:

http://www.diabetes123.com/clinic/untethered.htm

(I'd think the guy was more of a genius if he could spell it......still I guess you can be an "inventive" speller and still be a genius - what do you reckon Spike?!)

see also the other links at the bottom of the page.

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Postby Bruno » Sat Mar 25, 2006 2:35 am

Your part-time pumping makes my daily smörgasbörd of Lantus, Protaphane, Actrapid and Novorapid look pretty pedestrian...
(3U Protaphane at bedtime fills in the gap that not-quite-24hrs Lantus leaves, and Actrapid is a useful bolus-booster for a high-protein meal)
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Postby Eastwood » Sun Mar 26, 2006 10:12 am

Hi George,

Really interested to see that you are going from the pump back to injections. What's made you make that decision? I'm going to get the mimimed 712 on May 15. Most of what I have heard about pumps vs injections has been along the lines of Lambo's last post - once you've had the pump you never go back. So just interested, as I am still a bit hesitant about the pump (though commited to giving it a go).
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Postby UpNorth » Mon Mar 27, 2006 8:23 am

I switch between pump and MDI... planning to take a pump break soon again (just got a couple of NP4's, and are keen to try them hehe), and i prefer MDI during summer months. My control is just as good on MDI as on pump.
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Postby Mel » Mon Mar 27, 2006 10:48 am

Hi George,

I'll be interested to hear how you find going back to shots. I admit considering it from time to time, I find the high maintenance of the pump itrritating at times-a dodgy site or something and I am 25+ in no time at all. I've never tried lantus or levemir, when/if they go on the PBS I might trial them.
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Postby George » Tue Mar 28, 2006 10:10 pm

My original decision to take a brake from pumping was because I have gone through a patch of really resenting being attached to the device. I also am really curious about treatments for diabetes; I like to try them all so I had been really tempted to try a Detemir insulin. Part of the rationale was wanting to be really sure that the pump is the right choice. I am massively satisfied with it generally but I want to be super sure. For example, I wanted to know what outcomes I could get from MDII on a Detemir, and if they are similar to pumping, and therefore it may be a new option for me.

From the start I have been anticipating that I would only be taking a break and would return to the pump after a month or two - but I'm open to other endings.

The start of my plan is to be completey pump free. I'm on about day five now and its been a very interesting journey so far. I am loving being totally nude; getting out of bed and not needing to carry the fucking thing with me, not having it rub against my side all day, not worrying about getting it caught, being able to take long baths, being able to receive a full massage with all of my body touched (read that last bit however you like). I certainly was very used to wearing the pump and seemed to forget that I was attached most times but having removed it I totally notice its absence and feel very free.

I'm feeling really settled on Levemir now, my levels have been pretty sorted and I think I have the doses set - I've decided on twice daily, 10u in the am and 20u in the pm. I may try a once daily a few weeks down the track but so far this is working well. Because its working well I'm also feeling really happy that this is actually an option for long term - by that I don't mean coming off the pump forever but before this I was too scared to ever come off the pump because of bad memories of Protophane - which I think is more of a practicle joke than an insulin. So for example, if I return to the pump but years down the track want to take a few days off it to go on a holiday or something where the pump would get in the way I am confident in this option now.

The things that have been difficult are needing to remember to take the injections and the inconvenience of injections. The other day I bought a cup of yogurt and had my hands otherwise full; normally I can just bolus with the push of a few buttons anywhere I like but I forgot that injections are such an ordeal. I finished my breakfast the other day and immediately had to jump on my bike to ride to work, I had forgotten my meal bolus but because I was riding I needed to stop and open my bag up etc. to sort it out - the pump would have been much easier.

Being on MDII also makes it hard to keep track of your TDD and I used to stagger my insulin for meals on the pump: 2 units at entree, 2 units to have a piece of bread.....then one unit to eat some veggies....then half a unit to eat some dip.....then two units to.....etc.... so i could take up to five doses for one meal but on injections this is more disruptive.

Taking correction doses is much harder because I'm limited to whole units now which can sometimes be too much - but you manage, its really not that bad. However also needing to calculate Insulin on Board. There really is so much more remembering and calculating to do on MDII compared to pumping.

Blood spots on clothing is something I had also long forgotten but am revisiting now.

So that's it so far. I'm planning on being totally pump free for 1 to 3 months. I do also want to try the "untethered" approach upon reconection though because I think that's a wonderful idea - but that's going to have to wait at least one month for now.
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Postby Mel » Wed Mar 29, 2006 11:20 am

I can relate to the being aware of all options-I think I keep hoping there is a no diabetes option. I was wishing I had some long acting insulin last week, was on hols in NZ and went swimming with dolphins, but had to go out on boat and return in wetsuit so pump wasn't practical and a mid-way top up with humalog was only a last resort as would have to pull wetsuit down to at least top of arm and it was very cold. ENded up feeling a bit crap by the end of it but swimming with the dolphins was great!
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Postby Catapult » Wed Mar 29, 2006 9:13 pm

George wrote:getting out of bed and not needing to carry the fucking thing with me


i have discovered the unplugged approach to toilet or hypos at night and showers in the morning...

i disconnect and leave the pump in the bed and reconnect when i get back in.

too lazy to carry the pump to the loo and i don't like holding it in my lap while i'm peeing or taking a dump, and the alternative is to put it on the floor (no thanks). we need to have a small shelf next to the loo paper for our pumps.

Cat.
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Postby Bruno » Wed Mar 29, 2006 9:58 pm

I love George's comment about Protaphane being more of a practical joke than an insulin. Priceless.

I just read an article about the future of pumping versus needles. It talked about how great an advance insulin pumps were initially, as at that time most people were still using regular (not rapid) insulin for their bolus requirements. The availability of rapid insulins has eroded a significant chunk of that original advantage, and so too more recently has the availability of the peakless insulins Levemir and Lantus. So although a pump still offers the greatest degree of control thanks to programable variable basals, micro-delivery and suspendability, the needle still remains a reasonable and reliable alternative for those willing to play the game one jab at a time.
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Postby Spike » Wed Mar 29, 2006 11:53 pm

i'm with bruno, i think that their are pluses and minues for both systems, i don't think that i'd handle levimer/lantus well as i have a huge variation in my basal regime on the pump, not sure a relativly peakless insulin would work effectivly, and i'm sure their are people out their who's needs are relativly steady and are prime for lantus and it's kind.

Personal choice is obviously a big factor, if your not happy with what your using all teh options we have now are great. I'm a big beliver in use what suits you bugger what others are doing! if it works don't try and fix it.

I understand the need to feel free of the pump especial in toileting senario's even after six months i still haven't forgoten the old ways! as for massages, well i'm ticklish so thats not really my cup of tea!

if protophane is a practical joke, then mixutard was a university prank that went very very wrong only to be copied years later by novomix
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Sleeping is a joy

Postby George » Thu Mar 30, 2006 5:14 pm

When I started pumping I was amazed at how easy the pump was to sleep with. But now that I'm not wearing it anymore I am really noticing how much easier it is to sleep without it; this is mostly because I move more while I'm asleep than I do awake. Its like I'm on a lamb-spit, I just keep on revolving and revolving until I wake, typically with the pump cord wrapped around my waist.

Today I am preferring to be on MDII.
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Postby Muzz » Thu Mar 30, 2006 10:50 pm

ahhhh, I love a good practical joke- so much that I take some twice a day.

Ok so I have a special relationship with protophane- it loves me so i love it. Its kinda like drinking home brew- most people think its quaint or 'ye olde', its not everybodys cup of tea but it works for some.

On the other hand these examples of uber insulin experimentation have got me thinking its time to try another beer.

Bruno- thats an impressive list of insulin types, do you take ice with that or just a carb chaser? I assume the actrapid with high protein is to compensate the slowing effect it has on absorbtion of carbs into your system? So the protophane covers the shortfall of the Lantus- but if you had another dose of Lantus instead of protophane does this overlap too much with your main Lantus dose?

George- all the best with it, I like your experimentalist approach.

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Postby Bruno » Fri Mar 31, 2006 10:58 am

Muzz wrote:Bruno- thats an impressive list of insulin types, do you take ice with that or just a carb chaser? I assume the actrapid with high protein is to compensate the slowing effect it has on absorbtion of carbs into your system?

The Actrapid is to cover the delayed glycogen release (gluconeogenesis) from any big protein meal, nothing to do with straight carb absorbtion, and it's no big dose, only ever a couple of units worth.

Muzz wrote:So the protophane covers the shortfall of the Lantus- but if you had another dose of Lantus instead of protophane does this overlap too much with your main Lantus dose?

My Lantus shortfall is only a few hours long, but a Lantus-Lantus overlap is like double-dosing for many many hours. And split Lantus shots still don't cover my dawn effect completely. With once a day Lantus every morning, the bedtime shot of Protaphane peaks from 5-8 hours and gives me the top-up I need before I wake up, and then it's gone by the time my morning Lantus shot comes online. Sure I could program a pump to do the same, but it's no hassle to just take one extra jab...
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Postby Catapult » Fri Mar 31, 2006 11:10 am

i had a cool idea for a long-acting insulin.

everyone's basal needs are different, so we need TAILORED long-acting insulin i.e peaks when you need it, troughs/flatlines when you need that.

everyone gets on a pump to work out what their basal rates are like. mine is different for each hour e.g mine varies from 0.05 units/hr at 3pm to 2.2units/hr at 6am. peakless insulin (lantus or levemir) would be disastrous for me.

then, have some plain actrapid and you add the cloudy business (zinc as in monotard, protamine as in protophane) in the ratio that works for you, so you get your peak when you need it i.e 4-8am for me. protophane always peaked at 1-3am causing nypos and then nothing was around for the dawn phenomenon.

i am interested in keeping up with george's unplugged regimen. i find that wearing loose undies with pump tucked in works well for me. sleeping naked does cause "human on a spit".

Cat.
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Postby Nic. » Sun Apr 02, 2006 11:34 am

It is so nice to hear that others have come off their pumps. I have divorced my pump, after an interesting relationship of 9 months. Although my BGL's were so much more predictable and the highs were easier to control, I love not being attached to something. The first morning in the shower, with no cannula was fanatastic. I personnaly don't have any issues with MDII's, but being on the pump certainly did highlight how much more flexible life can be, but the freedom is great.

My endo has started me on the protophane/novorapid pattern with mixed success, but we are considering the use of Levermir, as I have tried Lantus, only to encounter serious bgl's, but at least no unconscious hypos.

I don't know when or if I will reuite myself with 'pumpy', but at the moment I am enjoying my freedom, even if it means a time of unstable/ unpredictable/ frustratingly high bgl's for no good reason.
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Postby claire » Mon Apr 03, 2006 11:35 pm

This has been a really interesting thread to follow. As of right now, I've been attached to my pump for exactly 3 weeks and 12 hours. SO far, so good (oh, except when i wanted to throw it across the room after dinner tonight but thought better of it, as it probably would have hurt) - although i'm not yet at the point of giving it an endearing name... it has to prove itself to me first.

IN some ways i wish i'd seen some of these comments and ideas about pumping vs MDI before i got hooked up, but am definately not regretting my decision - i've been feeling so much better all round, less moody, less lows, less highs (and rundown from of rollercoastering sugar levels) - there seems to be so much less effort involved in actively 'looking after' (or whatever you want to call it) your diabetes on a day to day basis compared to injections (that is, after i got my basals and boluses sorted out & got used to having the pump on me - although that bit still does shit me occasionally - see above).

WHen i was doing my 'research' on the pros and cons of pumps, i came across a couple of blogs written by young pumpers from the US, that i found really useful in terms of the practical and emotional (rather than medical) pros/cons of pumping.

Just reading one now (god its weird how the blogs of complete strangers can become so addictive..), and this girl has just recently written a few quite detailed posts about going off her pump and onto Levemir and Humalog, then going back on it after a week or so, for similar reasons to the ones George and others have mentioned - thought it might be of some interest/relevance here to people thinking about making the switch.

http://jengrasman.blogspot.com/

I'm sure there'll be a time (whether a dirty,trashy camping/beach holiday/road trip, etc; or cos i'm just plain sick to death of it) when i'll switch back, but right now i'm feeling better than i have for years - I don't have that cotton-wool head thing happening all the time. (AND!!!!.... i've already lost quite a bit of weight without even actively trying - which i found impossible on needles).

but whatever works for you i guess (that seems to be the catchphrase of this forum)
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Postby JAC » Tue Apr 04, 2006 2:01 pm

Hi George

Hope all is still good for you and your MDI. I myself have never had a pump and I get sick to death of doctors telling me I will have better control with one. For me being attached to the thing is not an option. A friend of mine was put on a pump for 6 months while she was waiting for another pancreas transplant and she hated every minute of it. She was also like me in not wanting to be attached to some stupid machine. I also couldn't deal with the infections everyone seems to get from the sites.

I am using Lantus and have been for 3 years now so my life is much easier than it was on protophane. My HbA1c used to be 4.5 and now it is around 7.9 but this is because I don't have the constant hypos (my sugars ranged from 1.6 to 15.7 all day long [28 to 275 for those of you in the US] which was how I got such a good HbA1c.

Bruno I used to have a problem with Lantus around dinner time so I increased my lunchtime novarapid from 6 to 12 units and now I don't have high sugars pre dinner. For me this is a much better option than having protophane as well.

Personally I don't have a problem with MDI and I get quite cross when people say "oh did you know they trialling a new way of having insulin so you don't have to inject" like injections are the problem. When for me the only problem is how am I going to live longer than the experts estimate!

By the way I have had T1 diabetes for 36 coming up to 37 years.

Anyway George good luck.

Regards



Jane
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Postby Mel » Tue Apr 04, 2006 9:25 pm

I also couldn't deal with the infections everyone seems to get from the sites.


I've been pumping for a little over 4 years now and never had an infection from my site. I also felt much better on the pump than on mdi, but I was using protaphane.

I do understand the attachment thing though and if it ain't broke don't fix it re changing from MDI. I may give either Lantus or LEvemir a try if they ever get listed on the pbs but I suspect I'll feel like Acey was it who said not having the pump was like being an amputee.
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Postby Be11ydancer » Tue Apr 04, 2006 10:05 pm

I've found this whole thread really interesting. I'm still trying to convince The Bear that a pump is good (he says he feels icky about me being attached to it).

But George's comments about feeling free are making me wonder if it would cramp my style. On the other hand I'm tired of the hypos- protopane really is a cruel thing to do to somebody but we just can't afford $150/month. The pump would eliminate the peaks and I could run a little higher for a while and that might help the hypo awareness. I'm just not brave enough to run high on jabs.

Cat, I do already have a little shelf above the loo paper (it's actually a step for the cats to get up to the window) so maybe it's a sign that I am totally prepared to be on a pump.....
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Postby Kate » Tue Apr 04, 2006 10:06 pm

I have also been following this thread with much interest. In fact just clicked in thinking must dig through and find George's old post and see what I've missed only to find it very popular at the top of the forum!

Like everyone I can totally appreciate the frustrations which might make one decide to separate or divorce but have been pondering this and a few points to add. (I think it must be 5 years since I started pumping for interest.)

1. If you have a body shape (and size I suppose) that hides a pump very well, I think this makes it much easier - it's really rather hard to spot, less questions, I even forget its there regularly. With thanks to my paternal forebears for the curves. But investing in accessories is also a good idea, and over the years my wardrobe ahs adapted I suppose, but not really on purpose.

2. Having some time alone helps. Ditto Cat re disconnecting when get out of bed. Another thing is to time a site change around a shower so you're unencumbered and can forget about it for a bit.

3. Very early on pumping I had some very lucky, in retrospect, experiences where an err intimate exchange involved me bumbling to explain pump mid-err yeah and the other person not giving a shit. This gave me a lot of confidence to also not give a shit which set me in good stead ....

I really think the pump brings up a lot of issues around how we see our diabetes and ourselves, by making it visible to ourselves and others. I think this can be really positive in the end, as beginning to accept it fully - regardless of pump - takes a huge weight off, or has for me. Again we're back to my favourite topic of coping, and the lack of pyshc/counselling services, and diabetes yada yada yada dead horse.

Though on top of diabetes issues it confronts that quagmire of body image issues but as I've got older and worked through these managing diabetes and my attitude to my pump has also changed ... though I also wonder if perhaps the pump was/is partly a catalyst to working through stuff like that ....

Enough already ;) But thanks for the very interesting discussion.
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Tricky things about MDII

Postby George » Tue Apr 04, 2006 11:56 pm

Tricky Things About MDII

    Waking up hypo every morning and not much I can do to avoid it.

    Hypos that wont go away - they just seem to stay with you for hours.

    Remembering shots - and therefore unpredictability around the insulin works in the gap and cross-over times.

    Harder to calculate your IOB and therefore easier to overdose.



However, today I'm still prefering MDII.
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Postby Kate » Wed Apr 05, 2006 12:20 am

And I keep forgetting to add, thanks to Geroge for being our very own guinea pig. Keep reporting in! :)
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Postby Anne » Wed Apr 05, 2006 7:21 am

I am very interested in this thread as I ended up taking a few pump-holidays since 1996 when I was first connected to a Minimed 506.
The first time, we separated for a year, as I got frustrated by pump technical hiccups, bubbles and kinks, and in those days I was not told to use pens to quickly correct such pumps incidents. Another occasion is my week by the pool with my nephew/nieces annual event, and I d rather use pens and disconnect for 7 days. Other shorter times have been big parties where I decided to use MDI and wear that lovely tight black dress... once or twice a year only, my life is not that exciting.

Currently, pump number2 is behaving really well, despite a A33 error once last year. So I am happy pumping, and like Cat my basals have been shown to be so variable that MDI would be a nightmare to cover them. Hence the old late night hypo and early evening highs that I could never get right on MDI, no matter how much I tested. Or the exercise where I had to keep feeding my hypos at the gym, whereas now I just disconnect.

Go on, George, let us know how the separation goes day after day.I hated the MDI night hypos so much and the huge amount of food needed to recover as they carried on for ever on MDI.
I usually went back pumping after days/months, by choice, which made it more acceptable to me. Good luck!
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Suddenly I know nothing...

Postby George » Wed Apr 05, 2006 12:36 pm

Here I was thinking that I had done my research. It turns out my research was wrong.

I thought Levemir and Lantus were the same. I thought that Levemir had a 24 hour action. Wrong and wrong.

I rang my DNE to sort out the hypos I was having in the morning. Given that I thought Levemir was a 24 hour action I wasn't sure of the best way to titrate it BD.

The weirdest thing was that I had spoken to my endo about taking it once a day and he gave me a program for changing doses to take it once a day. Either he's confused or I totally missed something. Eg; I'm on 10u am and 20u pm. He suggested moving 2 units at a time:
10u am 20u pm
8u am 22u pm
6u am 24u pm
4u am 26u pm
2u am 28u pm
0 am 30u pm

Well it turns out that's a bad idea for Levemir. Totally confused about how I misunderstood that, or if it was my endo.

Knowing that now makes it much easier to avoid the hypos I'm waking with - all I need do is reduce the pm dose.

Today I prefer pumping.

The other thing I miss about pumping is feeling so much more in control. Holding the device is also so tangable. You really feel like you're in control all the time. You can change dose at any moment to suit you. But if things start to feel odd with MDII you simply have to ride it out.
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Postby Bruno » Wed Apr 05, 2006 2:43 pm

I've recently figured out that the best way to change dosage time on Lantus is not to do fancy splits and phased changeovers, rather let the current shot of Lantus run its course for the full 24 hours, top up with a few units of Protaphane if you like, and just wait until the new shot time eventually rolls around and resume at full dosage. Anyway, the tail of the old Lantus shot, at rather reduced strength, lasts way beyond 24 hours, so it's not like switching off your basal at the 24 hour mark, pump-style. It's worked for me twice now with no dramas and no wierd bsl's.
{'*'}
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Postby claire » Wed Apr 05, 2006 3:04 pm

yeah, they say Lantus can apparently stay in your system for 3 or 4 days -- as demonstrated when i went ridiculously hypo for what seemed like all night on my first day of pumping, even though i'd taken protophane instead of lantus the night before so there wouldn't be an overlap.

so george, even if you are trying to change lantus doses/injection times around, there's a good chance you'll still have a fair bit of active insulin circulating to cover the gap -- not the perfect amount, but probably enough to get you through
31, type 1, diagnosed '95, still figuring it out..
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Re: Suddenly I know nothing...

Postby Kate » Thu Apr 06, 2006 9:02 am

George wrote:Totally confused about how I misunderstood that, or if it was my endo.


Are y'all thinking what I'm thinking? I know where my money is on who's the diabetes expert :)
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Postby George » Fri Apr 07, 2006 11:48 am

Kate, deep down I know that he was actually wrong, but it's amazing how we're socialised to never question a doctor.

Today, regarding the pump-holiday, I am feeling really guilty.

I prefer the control I have on the pump but I prefer the lifestyle I have without it.

Physiologically I find the pump much easier and my emotions regarding my control are best on the pump. However my emotions are otherwise best on MDII.

The guilt that I am feeling today is related to me feeling that being on Levemir may just work out for me in place of the pump. I feel guilty that I went to all the effort and expense from my pocket and private health to get a product that I may not use any more.

I appreciate this guilt is pointless and that theoretically I have nothing to feel guilty about but the feeling still does not leave me.
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Postby Catapult » Fri Apr 07, 2006 1:37 pm

George wrote:The guilt that I am feeling today is related to me feeling that being on Levemir may just work out for me in place of the pump. I feel guilty that I went to all the effort and expense from my pocket and private health to get a product that I may not use any more.


if you donate the pump to a worthy cause, it is not a waste of money, and somebody will be greatly appreciative i'm sure.

you are looking for the best balance in your life, physiological over emotional, and it is a hard one. do you choose to be happy and unplugged with poorer glucose control? or less happy, pumping and having glorious glucose levels?

personally my glucose levels are so rotten on MDII that my mood suffers as a result, so there's no choice for me.

Cat.
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Postby Nic. » Fri Apr 07, 2006 4:53 pm

Hi George,
I think I know how you are feeling, phsically I was much better with my pump, but psychologically I was a mess on my pump. I feel so much better from a lifestyle point of view without my pump, but I would like the control in terms of my BGLs.

For me I think my psychological wellbeing is more important at the moment. Like you I feel guiltly for the cost involved with setting up my pump, and the educators' time involved, which maybe someone else could have used, but I have given a try, and without that I would still be wondering if the pump would make a difference.

I am not in a position to donate my pump, as I still feel some attachment to it, and you never know, I may well go back. At least you gave it a go!
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Postby George » Fri Apr 07, 2006 5:18 pm

Yeah nic. I definately share in those thoughts.

I am not yet sure about what treatment option I will take in the future. I may well return to pumping quite happilly, or reluctrantly....but at this stage I am still exploring and experimenting.
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Postby Nic. » Fri Apr 07, 2006 6:27 pm

My endo is on holidays at the moment, but she is happy with me experimenting in her absense, with a possiblilty of Levermir, so George I will be interested to see how it works for you...

I have had people both family and collegues, including health professionals doubt my decision, but it has been so good to know that I am not the only one.

The educator I dealt with when starting the pump made it known to me that if I stopped for any reason she would see that as a personal failure to her, as the pump was by far the best thing for people with diabetes. I agree with her the pump if great but it may not suit everyone...and I am one of those people.
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Postby Eastwood » Fri Apr 07, 2006 8:35 pm

I've really enjoyed this thread George. Diabetes obviously impacts on quality of life, so it makes sense to shop around to see what treatment option offers the least impact. I can relate to your decision to exchange tighter control for a better quaility of life in the here and now.

I'm getting the pump May 15. I am actually looking forward to it (it's taken me a while to get there) but I have told my endo that I just want to bring my a1c down a bit. I am not interested in 5's and 6's. Between 7 and 8 is where I'll be aiming to stay. Maybe I'll drop it a tad more if I get confident and consistant at the range. If I can drop it to 7-8 it will be an improvement on where my control is but will still allow freedom from walking the tight rope of control that's been pushed on diabetics since the DCCT study. My quality of life is better on a day to day basis living this way. Tryng for tighter control limits me too much.
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Postby Kate » Fri Apr 07, 2006 9:03 pm

I know a diabetes and pregnancy clinic that would be delighted to alleviate any guilt by accepting donated redundant pumps, and have already successfully done so once with an RCer inc. drawing up the necessary legal paperwork to absolve her of any responsibility for the donated pump's functioning etc. Anyone interested please email me, and we can work on sending your pump to a grateful new home, even if only for a set period eg a year through pregnancy and planning.

K
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Postby Bruno » Sat Apr 08, 2006 8:12 am

At the end of the day (and possibly at other times too <sic>) the most important issue is whether you're getting enough insulin for your needs, and at the right times. Whether you rely upon the chemical release profile of your insulin or an electromechanical delivery device to achieve this mix of dosage and timing, it's a matter of choice and commitment, and there are no rights or wrongs here. The confusion, indecision, and subsequent mistakes that come from chopping and changing methodologies, are probably more detremental than the shortcomings of any single approach that's otherwise running smoothly under habitual control. And anyway, we all adapt our activity cycles to make allowances for whatever quirks our chosen insulin regime involves, and that predictiability (even if it's a predictable degree of unpredictability) allows life to go on.
{'*'}
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Postby Kate » Sun Apr 09, 2006 4:04 am

George wrote:deep down I know that he was actually wrong, but it's amazing how we're socialised to never question a doctor.


It is my personal quest to "un-socialise"! :) Question and question again. To my mind, it's not challenging them rather comign to an understanding of your condition, treatment options, reasons behind those, etc. Enough already.
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Postby Catapult » Sun Apr 09, 2006 11:20 am

Kate wrote:
George wrote:deep down I know that he was actually wrong, but it's amazing how we're socialised to never question a doctor.


It is my personal quest to "un-socialise"! :) Question and question again. To my mind, it's not challenging them rather comign to an understanding of your condition, treatment options, reasons behind those, etc. Enough already.


such as when i told my (not endo) doctor that it was ok that i ate chocolate and that i'd bolused accordingly, and my glucose was 5.7 after that. also the same situation when a bunch of us went to the pictures, and one busybody (a nurse who is the mother of a 15 y.o. with PCOS) berated my eating of chocolate. i shoved my glucometer in her face and basically told her "eat and pump".

my doctor also questioned me once on why i had altered my medications like so, and i replied that i am the only one who can feel the side-effects, therefore am in the position to judge if the meds need adjusting so the desired effect comes about without side-effects.

you just gotta tell 'em.

a nurse once told off my anaesthetist while i was in ICU (he'd brought about my unconsciousness by hanging a glucose drip instead of saline). the nurse said "she knows better than you". i would have rejoiced if i wasn't so delirious and chained to the bed with 6,000 tubes in and out of my body.

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Four Weeks Later....

Postby George » Tue Apr 18, 2006 9:33 am

It has been almost four weeks now without the pump. I have been really enjoying it and although it is early days still I had been feeling confused about whether I would or would not return to the pump.

I am really loving sleeping without it. I mentioned this before but still each night I rejoice in being able to roll around freely. I am also still relishing in not having anything attached to me.

Then, just days ago, along came a 'however'! I have been feeling really tired and slightly unwell but could not figure out why. I weighed myself the other day and noticed I had lost 6kgs (and I don't have the weight to lose). I think there is a connection between the time I stopped pumping and the weight loss and general feeling of unwellness.

This then reminded me that when I started on the pump I felt a new sense of wellness. I thought I was being drugged with uppers because I had so much more energy. I guess it would make sense to feel the reverse, even if Levemir is a better MDII option.
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Postby Catapult » Tue Apr 18, 2006 11:09 am

6kg in 4 weeks is a lot to lose, George. i hope you are not running out of fat sites for your shots.

did you have lots of chocolate over Easter break, and how did you find the injections with that?

will we see you Friday night?

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Postby Mel » Tue Apr 18, 2006 11:12 am

Interesting, I must say I am seriously considering giving it a try as I could do with losing about 10kgs so if going off the pump would do it I'd be there.

I felt a sense of wellness from going onto the pump, not as intense as teh feeling of wellness I experienced when I went on 2 shots a day and home blood glucose monitoring that was amazing but I put that down to improved control. I suspect that your sugars aren't all that different pre or post pump so I wonder what it is that makes the difference, maybe less fluctuation in insulin levels, maybe the body is designed for rapid acting insulin only and these weird compounds aren't very good?
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Postby George » Tue Apr 18, 2006 12:35 pm

Going from my BGL averages I think I'm going to see a rise of 1.0% in my HbA1c.

I have also been massively stressed but my life generally contains much stress there is not too much different about the stress now and I have not lost weight from stress before.

Come to think of it, I have done less exercise this last month. I normally walk and ride for about an hour each day but currently only doing about that much a week.
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Postby Kate » Wed Apr 19, 2006 1:10 am

How do we think that not being on a pump directly relates to losing weight? We know there's a million contributing factors and as I have had the exact opposite experience I would err on the side of other factors causing Geroge's weight loss rather than purely the pump v MDII move. I felt like I had very little control over my weight on shots and then lost a pile when I first went on pump and now go up and down but find it much easier to manage and have never been as heavy as I was a year or 2 pre-pump. I also lose weight quite rapidly with stress, so can see how this might be the bigger contributing factor. Fortunately however I generally have weight to lose whereas last time I saw George he certainly didn't. Hope you're feeling OK. K
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Postby Mel » Wed Apr 19, 2006 2:05 pm

How do we think that not being on a pump directly relates to losing weight?


i can hope can't I?
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Postby artemis » Wed Apr 19, 2006 2:38 pm

I'm losing weight since going ON the pump - just a nice steady loss of about 3kg in 4 months. Absolutely impossible for me on MDI.
Jane
Infundo ergo sum.
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Postby George » Thu Apr 20, 2006 8:58 am

Yes, the weight loss is peculiar. I'm still not sure what it is about, originally I thought it was possibly related to a potential rise in my HbA1c but last night I was talking to a friend and my understanding of my stress started to shift a little. I had one of those refelective moments where you actually say things you've experienced or have been feeling out loud and suddenly you realise that things may be a bit more stressful than you gave them credit for. But for now I can only wait and see.

Woke this morning with another realisation of the benefits of the pump; my experience was that on the pump I could wake each morning with almost perfect BGL. On Levemir its more of a lottery.
General Morning BGL ranges for me:
Pump: 3.0 - 7.5
Levemir: 2.0 - 11.0

Similar problem around 9:30pm, about one hour before my next Levemir shot is due but the morning dose seems to be waring off and I get a distinct rise in BGL. I can be proactive about this and remember to take a few units of Novorapid at that time in expectatoin of the rise, but frankly I don't want to - I've got enough to do. I find it hard enough to remember the Levemir shots.
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Postby Catapult » Thu Apr 20, 2006 11:42 am

George wrote:last night I was talking to a friend and my understanding of my stress started to shift a little. I had one of those refelective moments where you actually say things you've experienced or have been feeling out loud and suddenly you realise that things may be a bit more stressful than you gave them credit for. But for now I can only wait and see.


i know what you mean. i hope that the external stresses depart very soon and you find some ways of relaxing and grooving again. talking it out is a big help to make you see more clearly what is really going on.

on the pump I could wake each morning with almost perfect BGL. On Levemir its more of a lottery.
General Morning BGL ranges for me:
Pump: 3.0 - 7.5
Levemir: 2.0 - 11.0


now that would put me off. i shan't be trying levemir or lantus (i know they couldn't work for me anyway).

do you feel more crapcakes of a morning?

do you think that having more unsteady glucose makes you more prone to reacting to stressors? i am more impatient and "stressed" when my sugars are high or swinging around.

Similar problem around 9:30pm, about one hour before my next Levemir shot is due but the morning dose seems to be waring off and I get a distinct rise in BGL.


and you are taking TWO shots a day of levemir? i thought the wearing off effect (e.g. 22 hour life) would only be noticeable with ONE shot per day?

I can be proactive about this and remember to take a few units of Novorapid at that time in expectatoin of the rise, but frankly I don't want to - I've got enough to do. I find it hard enough to remember the Levemir shots.


yuk. having to take extra shots to deal with long-acting insulin wearing off. you have 3 options that i can see:
1). go with the flow and just let the glucose go higher
2). inject that NR and stay level (or hypo)
3). take extra levemir and hypo the whole day.

more yuk.

if you inject more levemir, does it last a bit longer? you know how if you take a larger injection of humalog it lasts longer. (when i had an OD of humalog it took 3 DAYS to get it out my system. so much for 3 HOURS).

the "George: unplugged" experiment is quite helpful to us in that you clearly know the difference in glucose pattern because of your pumping experience, and can explain how the insulin wears off and glucose levels are more spiky. it is hard to explain when you've only known monotard or protopain your whole D life.

will we be seeing you Friday night?

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Postby George » Thu Apr 20, 2006 12:12 pm

Catapult wrote:i know what you mean. i hope that the external stresses depart very soon and you find some ways of relaxing and grooving again. talking it out is a big help to make you see more clearly what is really going on.

Thank you Catapult, I work in a very dynamic agency who are leaders in education, support, community development, health, and treatment. All of my colleagues are highly skilled therapists so just chatting about my day to a colleague turns out to be a very useful conversation. We also teach the Diploma in Counselling here and I am from a non-english speaking background, gay, and have a chronic illness so I'm always asked to receive counselling from the students so they can practice working with specific issues. Guaranteed I have received more counselling than anyone else here.

Catapult wrote:do you feel more crapcakes of a morning?

I'm mostly waking quite hypo so this makes waking in general very difficult, far more difficult than it was on the pump.

Catapult wrote:do you think that having more unsteady glucose makes you more prone to reacting to stressors? i am more impatient and "stressed" when my sugars are high or swinging around.

My sense is that yes, usteady glucose does meake me more prone to reacing to stressors. But also being on a new insulin routine is also adding to that. The pump is very assuring and easy to use and control once you have it sorted, whereas there is so much guessing and hoping with Levemir.


Catapult wrote:and you are taking TWO shots a day of levemir? i thought the wearing off effect (e.g. 22 hour life) would only be noticeable with ONE shot per day?

I think I posted something about this a bit earlier but it turns out that Levemir has a 12 hour action. When I first started on it I had the understanding that it was a 24 hour action but that is incorrect.

Catapult wrote:if you inject more levemir, does it last a bit longer? you know how if you take a larger injection of humalog it lasts longer. (when i had an OD of humalog it took 3 DAYS to get it out my system. so much for 3 HOURS).

No idea.

Catapult wrote:the "George: unplugged" experiment is quite helpful to us in that you clearly know the difference in glucose pattern because of your pumping experience, and can explain how the insulin wears off and glucose levels are more spiky. it is hard to explain when you've only known monotard or protopain your whole D life.

It has been very useful for me too to better understand my insulin needs and the way my body and mind react.

Catapult wrote:will we be seeing you Friday night?

Those of you without significant retinopathy will be seeing me. The rest of you will have to feel me. See you then!
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Postby EmmaC » Thu Apr 20, 2006 7:07 pm

SOrry to come to this thread late, but if I were to offer a simplistic summary, George are you saying that choosing not to pump is a tradeoff between having better control, flexibility and the being tethered thing,
Do you keep thinking something is missing and reaching for the pump to bolus?
The opposite of faith is not doubt, the opposite of faith is certainty.
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Postby Catapult » Fri Apr 21, 2006 12:52 am

George wrote:The rest of you will have to feel me. See you then!


you wish buddy! hope my eyes keep so i don't have to grope anybody :P

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Postby Axel » Fri Apr 21, 2006 1:45 am

Dear George,
I bargs the first dance card. You are worrying me and I really need to feel that you are ok so to speak.
See you soon. (My eyes are still ok!)
"Life is for living.................Let's go girl"
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Postby Carlie » Fri Apr 21, 2006 3:18 pm

Hmmm Ive not been to one of these RC diner things before tonight... but from reading the last few posts Im starting to wonder what Im in for??!! :)
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Postby George » Fri Apr 21, 2006 3:32 pm

EmmaC, this is my current feelings - which change by the hour:

Prefer Levemir because:
The freedom of no connection
Good-enough control (but not great)

Prefer Pump because:
Fantastic control
Flexibility
Easier life-style (sleeping in, sport, unpredictable routines, work)

At this stage I would rather not return to the pump simply because of the connection factor. I love the freedom of no connection but I do miss the much better control you have on the pump. Its a really hard decision for me just now.

I've been disconnected for one month now and still find myself often reaching for the pump.
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Postby Catapult » Fri Apr 21, 2006 11:48 pm

George wrote:At this stage I would rather not return to the pump simply because of the connection factor. I love the freedom of no connection but I do miss the much better control you have on the pump. Its a really hard decision for me just now.


i guess it is a matter of wait and see what your A1c is like, and if you get any worsening of complications?

perhaps you could do levemir at night and pump during the day? it seems that the connection factor is more of an issue for you during bedtime and getting up to pee or shower.

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Postby George » Fri Apr 28, 2006 1:37 pm

Today is five weeks of Levemir.

I've noticed in the last few days that I'm no longer thinking about the pump. I think I am now used to being on MDII and have accepted it as my standard treatment. That's not to say its my preference (still not sure of that) but I am not having any more thoughts of forgetting that I'm not actually on a pump at the moment.

My BGLs are still all over the place - far more than they were on the pump - but I think I now have the doses titrated to suit as best as it can.

Ignoring the delivery methods, I still feel that a pump offers the best treatment. However, that it neccessitates being adhered to a device is completely stupid. I have written this before but I think in many generations time they will look back on how diabetics used to wear these devices and find it shocking that we did so.

Through my work (an education and development institute) we did a focus program on the 'prosthetics of learning'. This is build on the idealogy that a prosthesis is more than just an artificial artefact to replace a missing body part, but it can be any item that we extend to our body in order to carry out funtions.

To oversimplify; a stethascope may be the prosthetic of a doctor's work, a dummy may be a baby's prosthetic...etc.

This has me thinking of the varying prostheses that are used in chronical illness, physical, and medical disabilities.
There are ones that require prolonged attachement:
Wheel Chairs
Walking Cains
Insulin Pumps
Spectacles
Callipers
Neck braces
Oxygen bottles
Colostomy bags
Orthopedics
etc.

And others that are more occasional such as Ventolin - though some of the aforementioned ones may also be occasional.
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Postby Kate » Sun May 07, 2006 12:48 am

Two things ...

Earlier there was discussion about Levemir and it working longer. My understanding is with both Lantus and Levemir that increasing the dose does NOT extend its action (unlike Protapain) which is another important benefit of these new insulins.

Re the porosthesis thing George .... I have said before that I think the impact of adding a visible prosthesis for a person with diabetes is highly underestimated and misunderstood, and that it brings up a vast range of issues - not least that there is now a trigger for people to make you speak about your diabetes - something most of us rarely have to without the pump there as a prompt, and this can be a huge shift.

However, it concerns me a lot that this one issue stops people from pumping, or that people (myself included for many years) deal with it by not pumping or stopping pumping, rather than working through the issue/s directly while maintaining use of the best available treatment method for this pain in the ass condition we have.
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Postby Mel » Wed May 17, 2006 10:12 pm

So George, how's it going? Now the novelty has worn off are you still enjoying the pump LSL?
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Postby George » Thu May 18, 2006 11:01 pm

I think I have now returned to what I've known: I have almost forgotten that I even used to be on a pump because I spent pretty much my whole life on MDII (or at least the DII in the early years) so things seem fine now. I now only miss the pump when times get tough on MDII, like sick days, days when my routine changes, when I want to do exercise, and when my BGL is a bit low and i'm too tired to get out of bed. But at those times I only have a momentary sigh and then move on with it. I still plan to return to the pump and I look forward to how I may love the pump again for making those times easier.

Naturally, the injecting bit is easy - but the way the drugs work still are odd. The pump definately has a lot more peace of mind because you don't have to worry about:
    Over-dosing
    Under-dosing
    sleeping in
    remembering to take your long acting at the right time
    forgetting how much bolus you took
    remembering to take your injections with you


I'm now half way through my Levemir and my next endo appointment is on the 22 June 06; I have been using that date (just cos its easy to remember) as the time to return to the pump.

My weight is still down by five kilos and that's really starting to concern me now cos as I've said before I don't have that weight to lose. I'm not on any statins but I've noticed the musculature in my thighs, chest and arms seems to have melted. However this does not seem consistent to whhen I was previously on MDII.

I'm also more aware of the stress I am under now. At about the time that I started back on MDII my relationship with my partner was ending (now ended). That was upsetting then but it was really awkward then, and therefore being single now makes things feel more peaceful - though I do miss the happy times. Overall though I'm feeling ok about all that.

My work load and work stress continue to be through the roof...but soothing. Having recently had some major successes in my work keeps the adrenaline pumping and makes me feel sustained in that stress but it must certainly be one reason why I feel so tired.

However I also had to move house - actually more than that: I had to move back in with my mom AND my grandparents!!! Aaahhh! Actually, that's really not as bad as it sounds. But it does mean a loss of many freedoms such as space and privacy.

Finally my beautiful little foster son has been a total delight but his foster mom, and my dear friend, had a heart attack which has had me really worried and needing/wanting to be with her. She's doing really well now but that also had me stop and realise that my plate's a bit full just now.

Given all the above, my friend said to me, "maybe now's not the best time to be fiddling around with treatments?".
To which I replied, "you know how messy my life ALWAYS is. When do you think is a good time?".
I think now is just as good as any time. And at that stage being on the pump was a bit of a problem to, so transfering to Levemir was a bit of an excitement in that abyss of gloom.
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