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Re: [IPk] Re: Frustrated and fed-up...
I'm on Mixtard30 in the morning before breakfast, Novorapid at 6pm before
tea and then Insultard at 10.30pm before bed. Of course, I've hung onto my
Actrapid and use this when needed although I try not to as the hospital
don't like me to "mess around" as they can't get a true picture (even though
I show them when I do the extra injections)
My Doctor is Mike Krimholtz (who happily informed me on one occasion that he
has a lot to do with Kidney Disease so when I get that too I'm at the right
place...!) He seems nice enough but he's quite young and although only 28
myself I don't feel confident in his ability to see the bigger
picture...i.e, I just want to stay as healthy as possible until I am ill
enough to qualify for a transplant...of any kind!! (I promise not to be
It's that fine line I guess of being seen as not doing enough tests etc to
look after yourself, against being accussed of self-obsessing and making
yourself sicker. It's tiring always having to sell yourself to people to get
them to take you seriously.
I was wondering if people have applied for DLA as I have been advised to do
so. I am working full time and I know it's not Means tested but I have never
heard of diabetics applying before?
----- Original Message -----
From: "Pat Reynolds" <email @ redacted>
To: <email @ redacted>
Sent: Wednesday, March 14, 2001 5:03 PM
Subject: Re: [IPk] Re: Frustrated and fed-up...
> Hi Hilly,
> I too am at Guy's - with Dr Pickup, who I was sent to because my GP
> believed (on the advice of another doctor with whom we both had become
> completely fed up) that he was running a pump clinic. Either the
> referral request was unclear, or someone misunderstood it, or lied: Guys
> at that time was not running a pump clinic, and only started this year
> over two years after I was referred).
> I never see a nurse - or rather, a nurse takes measurements, blood, etc.
> I always see Dr Pickup. Who is your consultant? Can't you fax him and
> ask for an appointment?
> I am _finally_ getting a pump in April.
> Your nurse is right, Guy's won't pay for the pump or support costs, but
> (with luck and/or hard work) West Kent will (particularly, if John's
> research is anything to go by, if you get your local MP on your side).
> And I've got a feeling that there are two or three pumpers in West Kent
> I understand your nurse's frustration at not being able to make sense of
> your bg readings - I get frustrated at mine, too (and I bet you get
> frustrated, too). But someone needs to tell her, fast, that if you
> don't understand the pattern, the answer isn't to remove some of the
> data! (Looking closely at _some_ of the data is, of course, proper -
> e.g. looking comparatively at bedtime vs waking bg levels at different
> doses of long acting insulin). I often feel that diabetics need referral
> to medical statisticians rather than diabetologists!
> Best wishes,
> In message <001001c0aca4$4a7d17e0$email @ redacted>, Hilly Beattie
> <email @ redacted> writes
> >A huge big thank you from all who listened and replied...thanks.
> >I will take on board what has been said and have been considering
> >ship" to another hospital clinic. My problem is I am with Guy's Hospital
> >they are one of the big teaching hospitals so I keep being told. I am
> >considering King's but I don't know if that's just because they are one
> >the consultanty groups who will be doing clinical trials for Islet
> >I did meet with a nurse today and it went quite well but I was asked why
> >do so many blood tests and Ketone tests a day and wasn't I getting bogged
> >down with it all (i do on average 4-6 blood tests and 2-4 ketone tests)
> >even asked me to do fewer tests as there was too much information for her
> >take in. The only reason I do so many (and feel happier for it) is to try
> >and show these people that no matter what I try, my bloods stay out of
> >control. Also if I have any chance of a pump, don't I need to show all my
> >The reason I am trying to link in with the nurse is that I'm not ill
> >to go to hospital but not well enough to hold down my work, life etc. I
> >not Ketoacidic but run with sugars up to 20-odd most days but I feel if I
> >return to normal "life" then I will become sicker as my time will be on
> >other things, like working. At least that's what has always happened in
> >I was also told by Guy's that even if they supported me for a pump i
> >have to pay for it all myself as the funding comes from West Kent
> >and it would cost me at least #6,000 for the first year, with the
> >and training costs included. Now I am confused...
> >Anyway I still feel better to day (ignoring the unexplained 17.0 reading
> >just had!!) and I am just glad that someone saw me today.
> >----- Original Message -----
> >From: "John Neale" <email @ redacted>
> >To: <email @ redacted>
> >Sent: Tuesday, March 13, 2001 10:33 AM
> >Subject: [IPk] Re: Frustrated and fed-up...
> >> >...and needed to tell someone about a phone call I just had with a
> >> >mmy diabetes clinic and I hope this is okay to use this site for such
> >> >purpose
> >> >but I have no one else to de-stress with.
> >> Hi Hilly -
> >> You rant here as much as you need to. That's fine by me :-)
> >> I think that what you are reporting is absolutely disgraceful! If you
> >> making the effort, and your treatment plan is not working, then
> >> has to change. It sounds to me as if the hospital is failing you in a
> >> way. Short of disbanding the clinic and reforming it again, your best
> >> may be to up sticks and find another diabetes clinic, where they will
> >> you seriously. Speak to your GP. And while you are doing it, you might
> >> well find one that is familiar with pump therapy, because not all
> >> are. Contact INPUT (tel 01590 677911) - John Davis will be able to give
> >> the name of pump clinics near you.
> >> Read some interesting blurb about gastroparesis in the JDF
> >> magazine yesterday - it seems that Viagra (tm) may have a role to play
> >> treating gastroparesis, not just male impotence. They also suggest that
> >> of people with diabetes may get gastroparesis, and the current
> >> are not very effective. Gastroparesis is where the stomach fails to
> >> properly, leaving the food stuck in your stomach for a long time. Pumps
> >> help since you can slow down the release of a meal bolus as much as you
> >> need using the square wave bolus. And in turn, better bg control
> >> the gastroparesis, but gastro makes it very hard to get good bg's. Hard
> >> cycle to break.
> >> John
> >> --
> >> mailto:email @ redacted
> >> http://www.webshowcase.net/johnneale
> >> ----------------------------------------------------------
> >> for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
> >> help SUPPORT Insulin Pumpers
> >for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
> >help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
> Pat Reynolds
> email @ redacted
> "It might look a bit messy now, but just you come back in 500 years
> (T. Pratchett)
> for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
> help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml