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Re: [IPu] My story



Hi Luke,
Your diagnosis sounds like lots of us.  Alan (from the list) and I both 
attended the Roche session last year
(I was also "hassling" people here to attend if they could).

My group had 4 Pumpers in it and a lively discussion ensued between those 
T1's Pumping vs those injecting.
Looks like shots haven't been effective for you .... (not overly surprised).
Once you have your Basals and Bolus doses adjusted on a Pump, you are likely 
to have far
fewer BG swings and less lows ... seems that would be a big improvement for 
you
and "your other half".  Pumping is a bit like "learning Diabetes all over 
again"  but
I think well worth the trouble.  Despite having to wear a little Pump 
connected to you,
control is far more individualised and accurate.  Exercise, eating and 
living more flexibly is a big plus.
Less BG swings means better control and feeling much better.  Few of us 
having learnt to use a Pump,
would return to Muliple Daily Injections.

One or two books worth reading (and can be purchased from Amazon via Insulin 
Pumpers) are:
Pumping Insulin by John Roberts (3rd Edition)
Smart Pumping Ed by Howard Wolpert (American Diabetes Assn)

These books are sometimes available here in bookshops or DA (Diabetes 
Australia)  NSW,
but Pumping Insulin is A$70 from DA NSW.  Thru IP /Amazon it is around 
US$25.

Will send you another addy for an article about Pumps which provides a good 
summary about why Pumps
work better than Multple Injections.

Warm Regards,
Janette
----- Original Message ----- 
From: "Luke Fox" <email @ redacted>
To: <email @ redacted>
Sent: Sunday, January 30, 2005 3:25 PM
Subject: [IPu] My story


> Janette (and others),
>
> Thank you (and Doris) for your informative messages.
>
> My diabetes history is not unusual in most respects, with the possible 
> exception of my being unable to locate a diabetic relative on either side 
> of my family (apart from a great uncle who I class as a possible).
>
> Here's a little of my history in any case.
>
> I spent some years growing up in Southern India and have been back and 
> forth between there and Australia ever since. From about age sixteen 
> (while schooling in India) I began to get a series of boils. Whether this 
> has any link to diabetes I'm unsure, but within a year I had returned to 
> Australia and throughout the summer months of that year my mother became 
> increasingly frustrated with her teenage son as he (me) became lethargic 
> and generally even less likely to do much around the house. I began to 
> lose weight and constantly drink fluids. My elder brother marveled at my 
> incessant consumption of bread and butter.
>
> When finally one night I began to vomit my mother suddenly made a 
> realisation and mentioned the word "diabetes". The only time I'd really 
> taken note of the word was when reading a novel in which the protagonists 
> were trapped in a ski lodge and the young woman was diabetic. If they 
> didn't escape to find insulin, then she'd die. My mother took me 
> immediately to the local hospital. It was quite late, so apart from the 
> emergency ward, the hospital was quiet. The doctor tested my blood and 
> without delay informed me that I was in fact diabetic. I asked if I'd have 
> to stay overnight. He said. "You'll have to stay here for a few weeks."
>
> The next morning I awoke in a bed at the far end of a long room which ran 
> the length of the hospital. There weren't many others there. It wasn't a 
> ward for diabetics but as I later learned they did have a Diabetes Centre 
> in the hospital. Soon they sent a woman up to see me with a series of 
> books and illustrations. She began by showing me a sequence involving a 
> frowning pancreas and some naughty looking islet cells. I asked her to 
> bring me some real books on the subject.
>
> The point where the whole food aspect of the disease hit me was breakfast 
> that morning. I was given what to me seemed a rather modest hospital meal. 
> After a while a nurse asked me if I wanted anything. I said I'd love some 
> more toast. She came up short and told me that she couldn't give me more 
> food as I was required to eat in strict portions. I've never been good 
> with authority. I determined from that day on that I'd know enough about 
> the condition myself that I'd never be left with my hand out for more 
> toast only to be told no. If anyone was going to be in charge it was going 
> to be me.
>
> This approach worked well for the subsequent 15 years. I started on 
> Actrapid and Protophane and mixed them in the syringe. Later I went onto 
> the Novopen and took  Mixtard 30/70. I could feel hypos coming a mile away 
> and through knowledge of their clear stages I never had a serious hypo and 
> quite frankly, I never tested. My HbA1c results were good. Great on 
> occasion. So much so that the doctors let me stay on Mixtard when they 
> kept telling me it wasn't really designed for long term use.
>
> Eventually my HbA1c results began to creep up from 6 to 7 and then 8. The 
> endocrinologist recommended I change my regime. I was now taking Novorapid 
> with meals and Protophane in the evenings.
>
> Then came one fateful night in February of 2004. I awoke in the bedroom to 
> find my wife looking stricken and two paramedics standing over me. She'd 
> woken to find me having a seizure. The fit had had locked the muscles in 
> my upper back and it was very painful.
>
> Over the next few days I tested like a crazy man. A routine that I've kept 
> up as my hypo symptoms, once so marked, are now almost nonexistent.
>
> Soon I was put onto Lantus Glargine for the evenings and that's where I've 
> been for the last year.
>
> The problems I feel with this regime are that I find the results of any 
> given injection can be variable. I'm never completely sure what my body's 
> response is going to be. Lantus says it lasts 24 hours but I find 22 hours 
> a better guideline for me. This usually means a high or an over-corrected 
> low sometime in the late afternoon, early evening. I often find myself 
> eating just before bed even though I'm not the least bit hungry but my 
> levels are too low to risk it. Consequently I'll compromise on the high 
> end of the scale. Lows are not uncommon and many-times unexpected. If I 
> forget myself and eat a bit more than I should, it goes way up. It's 
> exhausting. My wife can certainly attest to my moodiness.
>
> Having said that, I feel my control is not too bad.
>
> I attended a half-day Roche Accuchek paid question session last year. In 
> my group of seven or so there was only one person, a young woman, on a 
> pump. The meeting's coordinator placed a large plate of sandwiches on the 
> table. The pump user was the only person in the group who looked pleased 
> to see them. She ate a couple. No one else did. This impressed me. She 
> seemed to have more carefree attitude to food than those of use who 
> injected insulin.
>
> Nonetheless it's taken me a long time to come around to the idea of 
> wearing a pump. I made the decision not even knowing the extraordinary 
> costs involved. I don't have private health insurance but I'm exploring 
> some options hopefully open to me.
>
> I'm generally very private about my condition. I was with my girlfriend 
> (now wife) 6 months before I revealed it to to her. Friends don't find out 
> until I've know them for at least a year or so.
>
> It may be time for me to change that approach, which like Mixtard, 
> Protophane et al before it, has served it's purpose. I'm determined to 
> remain in control and cut no corners in my pursuit of the best treatment 
> available. It seems clear to me that an insulin pump is going to be a part 
> of that.
>
> Regards,
>
> Luke.
>
>
>
> On 30/01/2005, at 12:36 PM, Janette Dunn wrote:
>
>> Insulin Pumpers is made possible by your tax deductible contributions.
>> Your donation of $10, $25, or more... just $1 or $2 per month is needed 
>> so that Insulin Pumpers can continue to serve you and the rest
>> of the diabetes community. Please visit:
>>
>>    http://www.insulin-pumpers.org/donate.shtml
>>
>> Your annual contribution will eliminate this header from your IP mail
>>
>> Hi Luke (and all),
>>
>> Under are 2 charts comparing Pumps and their features (now you know wht's 
>> sold in AUS and likely prices).
>> www.diabetesnet.com/diabetes_technology/insulin_pump_models.php
>>
>> www.integrateddiabetes.com/PumpComp.html
>>
>> I can provide contact details and phone numbers for all Pump companies in 
>> AUS if you'd like.
>>
>> We have members using all the Pumps I listed as available here.  Not sure 
>> if anyone has purchased
>> a Danacare (Diacare Pump),  but I could locate users on the US list if 
>> you'd like to email them and discuss pros / cons.
>>
>> Warm Regards,
>> Janette
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