I have more than laziness keeping me from updating my blog regularly now: the wireless
kit provided by our ISP has died. We are working through the stuff needed to move
ISPs (including getting my parents their own domain, publicising their new email
address and buying our own wireless router). I also succumbed to joining the church
council: something I always planned to do, but not necessarily now; however it seems
they needed somebody who was prepared to poke people. I would love to blog all that
stuff too, but it would require a huge number of personal comments!
My insulin changed over nicely. I now take 15 – 6 – 15 units of short acting insulin
with my meals, and one dose of long acting insulin (I am meant to take it at the
same time each night, but it ends up any time between 11pm – 2am). The pen for the
long acting is slightly annoying since if you dial up too much insulin, you can’t
dial back. Surprisingly, I have not had many problems rotating where I stab it into
my stomach, partly I suppose because I am using a wider area than before. During
my time without exercise I developed quite a paunch, so perhaps that helped!
I am not as tired as I was. Indeed I started going back to the gym last week, and
walked into work on Monday (with barely a problem). Unfortunately I am still short
of breath and when they took a lung function I was back down to 1.7 / 4.5ish. I
have spent the last month trying to get a prescription for Itraconazole – an antifungicide
that might hit aspergillus. The consultant is incredibly cagey about it: it can
have potential side effects (and steroids don’t??), and research shows that it is
somewhat useful in younger people otherwise not that useful for other CF patients.
My experience does not say otherwise, but since the Aspergilosis seems to be prime
factor in my lungs’ decline at the moment I would like to try something that is
not even more steroids. It just annoys me that they would hold back on this when
they find it so easy to prescribe strong antibiotics.
In fairness to them, they are not saying I cannot have it, just that they want to
see some blood results first – and for whatever reason they have twice failed to
get a result on my IGE (no, I have not idea what it stands for, but it relates in
some way to the Aspergilosis (ABPA)).
This is in the same week that a bunch of doctors write to trusts declaring that
the NHS should stop funding complementary therapies. I spend £60-£100
per month on complementary therapies, which probably saves the NHS at least one
course of IVs a year, at a cost of £1-2000 (for the drugs alone). No doubt
I would have to spend more time in hospital as well, costing several hundred pounds
a day (at a guess). There is also DNAse, the most expensive drug we take, which
I rarely use at the moment due to my other therapies. I imagine that I save the
NHS at least three or four times the cost of my complementary therapies yet they
won’t fund it.
The majority of complementary therapies that I have seen are incredibly cheap compared
to the costs of antibiotics and other destructive "mainstream" medicines.
If even 25% of treatments did what they were meant to do, I still think the NHS
is probably saving money.
Back to me then, briefly. Apart from ABPA issues, my lungs are producing thick green
sputum and my parents tell me that I am coughing in the night (but because the time
I go to sleep is in the middle of their night I cannot be sure that their "middle
of the night" is not when I am coughing just before I go to bed). When the
bloods came back from my clinic appointment at the beginning of the month, my CRP
(some sort of antibody level) was 11, barely above normal (10). However, prolonged
thick sputum from the ABPA could have given it space to grow.
I am, however, seeing the acupuncturist tonight so hopefully he can clarify.
Again, going back to my clinic appointment, the same day I changed my insulin over
I went for an hour’s reflexology (since my sister recommended it as quite relaxing
and purifying… I hoped it could remove the anaesthetic!). Unfortunately she rather
overdid things I was absolutely exhausted the next day, and for the two days after
that I had strange, mild pins-and-needles sensations in my hands and feet. I was
so concerned that I took an afternoon off work and rang the diabetes people in case
it was that. They slowly receded over a couple of days, and I am not going back
to reflexology – if nothing else, she did not treat anything –important- that Osteopathy
could not treat, and the latter would be more focussed.
The other strange sensation that week was not going hypo at all. The new regime
is much much more controllable than the old and I have only had one hypo since that
day. I am just not used to it. (For the record, I do not regret keeping my old regime
as long as I did: it was one less thing to worry about.)
Finally… I have seen a variety of osteopaths, mainly because my usual one is very
popular. Unfortunately I have to break it to him that his wife, who I saw for the
first and last time last week, did not do a very good job on me. *sigh*.
by Picks-at-Flies Comments