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Did me outpatients visit on Tues.  Norra lot to report. At the weigh-in I’m still hunky and handsome with enviable blood pressure and weigh much the same as I did 4 weeks, or twelve months, or 30yrs ago.

I was expecting to see the head honcha for a case review but when I presented at the desk they laughed and said she was on hol.  I enquired, didn’t they know this four weeks back when the appointment was arranged and they said of course they did and whoever told me otherwise (fresh faced SHO Chris) shoulda known it too.    Ho hum.

As I’ve muttered elsewhere, I find the med team slack in their approach.
In the event I saw doc Ruth again, a brief interview in which she told me I’d just scraped over the bar re. not having to inject m’self against my blood clotting but it’s good to see things going in the right direction, if slowly.

We also discussed whether the summer heat stress on my body this last week and a half was interacting with my meds to cause the screaming spells of daytime cramp I’m experiencing??   She said “Sure”.  I asked if she knew of any remedy for it and she said she’d heard that quinine could help.   I said I’d been told this a long time ago as I’m a long time sufferer from night cramps, did she know how or why it worked ??   She said “no”,  and I expressed this had always seemed to me a reason to avoid it.  Why take something when you don’t know how it works or what else it may be doing ??

And that was about it,  come back in four weeks time and see the head honcha.    (Ahem)

Then, by some sleight that I still haven’t figured out, she delivered me into the hands of some researcher.  This latter took me into a large cupboard to discuss her project.  I’m not kidding, it was like some sliding door wardrobe set in a corridor.

Seems that they’re doing research into what causes my complaint and how it progresses.  Cause is supposedly unknown (idiopathic) and they don’t have much nfo about its course until you become a patient.   

I told her I had an account of what I considered the precipitating event, a viral attack, in my bag.  I’d written it up as an email after the event and sent it round a few people I thought might have a clue what had copped me.  With it was my diary record of swellings that had subsequently occurred until I got admitted to hosp. 
I’d taken it to my GP when I first sought help, shown it a coupla times before I was admitted and it was now in my file of everything hospital.  I handed it to her and she was stunned.

We had to have a little chat about how you go about self diagnosing when something weird starts happening with your body.  The search for cause and effect.  She was stunned.  She said I ought to have been a doctor.

I used to know a doctor once.  He used to beat up on his wife.  Then he became a shrink and abandoned her.  I think civilisation would be over before I’d make it to be a doctor.

Anyway, I’ve consented for them to use my results from treatment and take some blood samples for the sake of posterity.  They’ve promised to anonymise me, which is what I’ve been trying to do for years.





Vampire room on the way out was a nightmare.  You don’ wanna know.

 


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