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RE: [IPk] Giving Up

Dear Pat,
It is very frustrating that you have had your clinic cancelled
especially as you have been waiting so long. But I have to say - I don't
think waking at 3 am to give yourself a dose of insulin (unless you are
awake at that time to do shift work..), blood test etc. shows that your
diabetes can easily be maintained on pen therapy alone. Even if it can
improve you control, it doesn't seem to be the answer - all that
disrupted sleep is easy to ask people to do - but to live with it - is
tiring...that can't be good for your health. My advice would be... write
to him outlining your concerns and facts. He'll have to respond to it -
hopefully with an earlier appointment. (or ask if you can fit into a
cancelled slot). 
Good luck, julette :)

> -----Original Message-----
> From:	Pat Reynolds [SMTP:email @ redacted]
> Sent:	30 July 2000 21:47
> To:	email @ redacted
> Subject:	[IPk] Giving Up
> I am feeling like giving up struggling with diabetes.  I just got a
> letter rescheduling my specialist appointment for ... the end of
> January.  Twelve months after I was told I needed a pump.  
> I went to see this doctor three years ago, having asked my then GP for
> a
> referral to a pump specialist.  It took one year of better control,
> and
> then a year and a half of worsening control to persuade him I was
> right
> ... and then A YEAR for him to get the clinic together that I na´vely
> assumed was there when I first went to see him three years ago.
> I feel like he lied to me three years ago, when he first agreed to see
> me.  But he's a hell of a lot better than the specialist I saw before,
> who didn't believe my bg results, and just asked me to do again things
> I
> knew didn't work.
> He says he wants me to wait for him to get NHS funding ... I've never
> seen any proof that he can fund raise/twist arms.  Annually, I raise
> about four or five times my own salary.
> And overall, I have the worry that if I put into practice any of the
> difficult to do, and time consuming things which seem to work a little
> (waking at 3am each night to give myself a shot, alternating doses of
> Monotard through a 6/10/14 cycle to try and get an even amount), and
> get
> a better Hba1c next time I see him ... he'll just use it as evidence
> that I don't need a pump.
> It doesn't help that the company I emailed, and specifically said
> 'please get in touch, even if it's only to say you can't help', didn't
> get in touch.  Needless to say, my preference has swung to the other
> company, even if their machine seems a little harder to programme!
> The situation isn't helped in that I was only cancelled at the very
> last
> minute - I had been expecting to go on the pump on Monday, and I have
> been trying to arrange dates for the past month.  So I have all my
> leave
> booked up for the next few weeks, and will not really have time to
> take
> off over the autumn.  Nevertheless, I am seriously considering taking
> a
> flight to the US. 
> I know that many here have concerns about patients going on-pump
> without
> adequate medical supervision, but my reasoning is
> a) I know diabetes as well as most specialists, and am willing to
> undertake any specialist training needed at the physician level,
> rather
> than the patient level (and to pay for this, if need be)
> b) my specialist is not in my area, so if I run in to any trouble, I'm
> going to be on my own anyway, out of office hours (and if it's an
> office
> hours problem, I can find that kind of answer out for myself, if I
> don't
> already know it).
> I'm frustrated, frustrated, frustrated.  And indulging in fantasies
> involving high explosives and a tower near London Bridge.  
> -- 
> Pat Reynolds
> email @ redacted
>    "It might look a bit messy now, but just you come back in 500 years
> time" 
>    (T. Pratchett)
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