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Glad to see you
here Kathryn.
Crikey mate,
what a sad day. I have been watching Steve Irwin's memorial. I'm
fairly sure that every tear I have ever made was shed
today.
I am never going
to hospital again either. They have no bloody idea at all and I can just
look after myself a whole lot better! In fact, when this first
happened, 5 years last August, I did look after myself. I couldn't walk,
couldn't wee, could hardly stay awake but I did everything for myself. I
was even exhibit one on the Friday training session. Hope it helped
someone, didn't do anything for me.
I checked myself
out after 5 days and really, have taken on my own recovery. I'm very much
a recluse too, very rarely venture out of the house, but I have so much to keep
me busy that it's not a bother.
I rely on this
family to be my specialists. They are the best I
know.
Sorry, rambling
too.
hugs
Gilly in
Adelaide.
www.originaltouchofgilly.com
for quality handcrafted costume
jewellery
Sent: Wednesday, September 20, 2006 12:08
PM
Subject: Re: [TMIC] Re: Brain stuff or
not
Hi,
I don't write in here often, but I read all the
posts. I really enjoy Frank's posts as they make me smile or laugh
- and I knew of course, that the comments in this thread were
tongue-in-cheek. :-)
I had a bit of a laugh about it too, as it is
soooo true.. I notice that Gilly also mentions bad
experiences, so maybe it's worse here in Australia? But the chauvinist
attitude of many of the male medical profession - esp. specialists -
here towards females is really awful. It's also really hard to find
anyone with any knowledge or interest in learning about TM. Most of what
I learned is through this website and list, and then I go to my gp to ask for
the meds or whatever, or with a print-out of info. My neuro who dx me
with TM costs $90 each visit, and I can't afford that, and like Gilly, it
seems a bit pointless anyway. I've also given up on all the
specialists, and just see my gp when I need new scripts. It was only
through this list that I learned of Baclofen and Neurontin, which has helped
me so much; I would have still been on Parkinson meds if not for that.
(Though the Madopar does still help occasionally, when my legs won't stop
jumping about at night. It really does work quite well for that).
The chauvinist attitude that I experienced - and also witnessed
being done to other women as well - in 2 long hospitalizations at our local
public hospital (and which I've vowed never to go back to - no matter what
happens), is something I would never have believed if I had not witnessed (and
experienced) it myself. My neuro that I see, only works in the private
hospitals, and I don't have insurance, and he doesn't have visiting rights at
the public hospital, unfortunately.
In our local public
hospital, they don't seem to even believe that TM exists, and they make
so many errors and stuff-ups that it's really very scary to be there.
One time when I was in the hospital in June, I told the staff that if I was a
male with the same symptoms, that I'd be treated differently. Well; the
next day, they put me in a men's ward. I was the only woman, in with 3
men. A friend of mine used to be a nurse at that hospital, and had left
because of the poor standards and way they treated patients. She told me
that for sure, she knew that they'd have done that to punish me. The
whole experience there left me traumatized, and it didn't help at all
anyway. Heaps of other things happened there too, including previously,
on one occasion, a lady died next to me, and they wrapped up her body, but
then left there for over 4 hours, before moving to the morgue, and left the
curtain half open, with me having to lie there next to her. Maybe that
wouldn't upset some, but I found it quite upsetting... There was
lots more, but I won't go into it all. I'm only now just starting to
recover from the experience.
My specialist and gp had
wanted me to go in there in May, when everything seemed to flare up again,
when I had the flu, and I apparently had very 'brisk' reflexes, and had some
foot response or something; they wanted me tested for MS, and put on
steroids. They did that at the hospital, and the test turned out
negative, but in doing that I was basically left in there to rot for 5 wks
before they discharged me, and I left sicker than when I'd gone in, due to
the filthy conditions, and negative atmosphere there. I've sworn
now, that no matter what ever happens to me; that I will never, ever go to
that hospital again. I have been referred to another specialist in
Sydney, but I've been too stressed and sick to go. I just want to be
left alone now. I just go to my gp for meds, and don't want to see
anyone else. I've become a bit of a hermit actually. Anyway; the
Baclofen has helped a lot, and I've been exercising my legs lots to try to get
back as much mobility as possible, (ditched the physiotherapists too), and
have made some pretty good progress lately; so at least things are looking
better than they were a few months back; and I'm feeling more settled, and
much prefer just looking after myself anyway. Unfortunately I live alone,
which makes things hard, but have gotten a good service from a local private
nursing group here, so I'm getting some help with housework and shopping, as
I've been in a wheelchair mostly since last December when the TM hit.
I've now progressed to forearm support frame, and have even attempted a bit of
staggering about with a cane. It probably looks pretty funny, sort of
like I'm very drunk or something, but there's no one to stare, or to panic
about my attempts, and at least I'm managing it. I feel I've progressed
much better since ditching the so-called public health services, and just
working things out for myself. Thank goodness I have a great gp
anyway.
Anyway, sorry for rambling on, but even when I think about
that experience at the hospital, I still get distressed. All I had
really meant to say, is that chauvinism and prejudice do exist in the medical
profession, and that women do definitely get the raw deal - certainly with the
public hospital system in this area, anyway; and I'm sure it must be similar
in many places. It's so wrong, and it seems almost unbelievable in this
day and age to come across such a thing, but it certainly does exist.
Best wishes to everyone here, and thoughts and prayers for
your wellbeing and recovery. .... and sorry for the long rambling post.
:-[
Kathryn
Bensville
NSW
Australia
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