Like pulling teeth

[stephbg]

Hope is poison. Today was a rough day as I tried to continue the momentum from yesterday regarding my new push to health.

I didn't know when I might get an appointment with the new Pyroluria-friendly GP Dr J, so I saw my regular GP Dr Greg today to request the test authorisations that had been suggested to me yesterday. I came away empty-handed, although I was bulk-billed so at least it didn't cost me any cash.

Dr Greg *really* isn't keen on Pyroluria as a valid condition or diagnosis, and is even less keen on the idea of a non-medical doctor making any kind of medical suggestions AT ALL. He himself saw absolutely no point in any of the tests suggested, which I half expected as he's refused tests in the past. At least this time he explained (repeatedly) that if he was audited he wouldn't be able to explain why he ordered those tests, which would apparently lead to his deregistration. (He knew a doctor once who ordered that sort of thing all the time, and she was struck off. Woo spooky.) He used to be an OB/GYN so maybe he's particularly concerned about regulation. Furthermore he said that no-one in the practice would approve those tests for me. I have the sneaking suspicion that this is at least partly practice policy, but not very helpful to me. Other doctors in the practice have come across similar requests from patients via Dr Nigel who works in the same area, and apparently their collective opinion of him is low. (This statement lacks scientific rigour – please recall you are reading a blog.)

So I expected at least partial refusal, but not complete. At least one of the tests was one of the crohns bloods I had done in 2009 with a specialist, so I hardly expected that to be labelled "fringe medicine". I knew he was conservative, but not *that* conservative. He gave me a card and encouraged me to see this other doctor (although he was again terribly disparaging about her practice which once hosted a naturopath *gasp*) and have her report back to him. He was prepared to learn, he said. I find it a bit hard to believe that, but I want to keep him on as an ordinary supplier of scripts. Throughout he was all very apologetic and polite, but quite firm.

After I got home and fed I decided to push on with the next part of the plan and contact Dr J to set up an initial appointment, and maybe get those test referrals to get done before I saw her. But no, she's not taking new patients, and as a bonus her receptionist was quite difficult to understand. Bang, door slammed in face.

I was feeling a bit defeated by this point. I had had a big day yesterday and had done a lot today already (apart from all this I was also showered, dressed, and the gutters are being done next Tuesday which involved a phone call to a Real Live Person), but felt like I was back at square 1. I went back to the very short list of recommended doctors and called the next nearest one, Dr Nathan in Mount Pleasant which is not at all handy, but better than the alternatives in Bicton and Margaret River. The good news is, he's theoretically taking new patients. I'm to await a call from the nurse who will take my particulars and assess my suitability. Here's where the call got more than a bit Who's-on-first surreal.

It was Tuesday afternoon, and the receptionist said the nurse could not call back because she only worked Tuesday mornings, but would try to call me tomorrow if she had time. But, I thought hazily, wasn't it Tuesday today and she wouldn't be there tomorrow because it was Wednesday? No, the receptionist said, she's gone home for the day. WTF? I forged on and tried to find out when I could expect a call if it didn't come tomorrow. Would it be next Tuesday? No, replied the receptionist, she only works Tuesday mornings. I'm hoping the nurse works more than mornings on Tuesdays, but it was far from clear to my raddled mind. I shall just have to wait and if I haven't heard anything by the end of the week try again. Gah.

All this left me feeling very low, with the certain feeling that I'd knowingly wasted a whole mountain of spoons. This is why I've avoided intense medical investigations for the last couple of years (there's always been something going on, but no new doctors in that time). My brain protests wildly that I'm being both inefficient and unnecessarily hard on my body. No good, and more than a bit of hard, has come of this kind of effort in the past, so it's hard to deliberately do this to myself. And as all things tend to do when you get weary, I felt overwhelmed by the idea of just getting to the SoR practice through all the roadworks in time for an appointment without further wasting energy on being ridiculously early.

Sigh, it got worse. I looked at the practice web site for info about Dr Nathan and found a glowing testimonial that made him sound like a combination holistic life coach and cult leader. Quite unfairly I know it just set off all my WRONG WRONG WRONG alarms so right now I'm not looking forward to the experience one little bit, whereas before I was all gung ho to meet another doctor I'd also never met who theoretically shared a similar medical philosophy. Frankly I'm afraid this paragon of Wellness will nag me. Also stupid – I *want* to be told to try new things (within reason). I need him to be less conservative than my GP, but not so fringe as to make me roll my eyes. Pyroluria itself is already teetering on the brink of that divide.

I really do need to talk to a psychologist about this medical phobia I seem to be breeding. I know I'm not quite on as stable a footing as I was before the test prep started, but I think there are some kinks there that need to be ironed out. And, I suspect, some unexpected kinks under the kinks I already think I know about. Surprise kinks are the best kinks.

Tomorrow is another day. There's laundry and mortgage paperwork and cat poo.

Comments

[redbraids.livejournal.com]

What a dreadfully tiring experience. Time for a rest day before the next steps.

[ariaflame.livejournal.com]

I suspect they were trying to say nurse does not work Tuesday afternoons. Probably works other days. But on Tuesdays just the morning. Hope this is the case.

[stephbg.livejournal.com]

I suspect this is most likely but was unable to get an unambiguous answer.

[rabbit1080.livejournal.com]

Eeeeuuuwwww, that sounds spectacularly and interminably horrible. Try not to get the mortgage paperwork mixed up with the cat poo, at least not to the extent that it annoys the bank too much.

*gentle hugs*

[leecetheartist.livejournal.com]

Gah. Strength to you.

[fe2h2o.livejournal.com]

If it's any encouragement, I met (well, I've been chatting with her weekly this year while we wait for kids... but found out) a patient of Dr Nathan's last night (_bizarrely_... she and another mother were discussing the changes in her diet, and were referring to words that sounded like ones I'd read on the wiki about pyroluria... I mentioned that I had a friend who had just been given a diagnosis of pyroluria and she said that's what she has) and Dr Nathan is _definitely_ the one to go to. Of course, she does strike me as at the fringier end of the community [homeschooler, after all:-) ], but she has been _very_ happy with him since her diagnosis in Feb.)

[prk.livejournal.com]

Ug, sorry that you're having the additional rough time with doctors :(

*hugs*

If it's of any help, I used to see Dr Lionel Lim from the Ashton Avenue Medical clinic in Claremont, and he was more than happy to organise any tests I wanted if I gave a reason for them.

I can't see why he'd refuse to run reasonable tests for Pyroluria given you have a confirmed diagnosis.

But it does mean meeting a new GP and going through the various history which will chew spoons.

prk.