I aten't dead

[baratron]

Back now. Apparently my blood test was completely normal, no raised white blood cell count at all. So there isn't an infection, just inflammation. Which is probably why it isn't quite so bad this time.

The nurse and doctor I saw in A&E had seen me before and recognised me (or possibly Richard, I dunno). After much waiting around I have been given some Tramadol, but only a few days' supply. The big problem I'm having is that because I'm allergic to aspirin, the entire class of NSAID anti-inflammatories is out for me. Aspirin and salicylate topical cream make me wheeze, ibuprofen makes my throat close up, and even the vapour from salol, a salicylate used in schools to model the formation of crystals in igneous rock, made me very sick. (I didn't even touch any of it, just breathed some of the vapour in; and was up the entire night, unable to sleep as I couldn't breathe if I lay down. If I'd realised it was a salicylate, I wouldn't have done the class). Normally they'd prescribe Voltarol, but they can't because of the allergy.

The A&E doctor said I need to see my GP forthwith and hassle them to try to push me up the waiting list, because otherwise every couple of weeks I'm going to be back in A&E in agony until it's sorted out. It transpires that within the NHS, the quicker you move up the waiting list is entirely dependent on how much noise you make about it (ailbhe, take note). I also need to ask the GP to:
1) Hassle the hospital about the latex allergy test I had done in Jan 2004 - or get it redone a.s.a.bloody.p, because I need to know for sure before people decide to poke latex inside me.
2) Do a blood cholesterol test (I'm worried about it, because gallstones are cholesterol + bile + calcium salts, and I have had an exceptionally low cholesterol diet for years now. Plus I eat lots of soya which is supposed to reduce blood cholesterol).
3) Find out for sure whether it's safe for me to take my usual calcium supplement, because not having it has been affecting my moods.

I got pissed off with my mum tonight because I rang her in pain wanting some sympathy, and she had a go at me about the fact "I've decided" I can't take Voltarol. I mean, what part of "I might go into anaphylaxic shock and die" does she not understand? If it is possible for them to do a blood test to find out whether it would be safe for me to take Voltarol then fine, I'll happily have that done (what's one more needle at this stage?!). But afaik, it's not possible to detect that sort of thing because aspirin allergy doesn't involve the same kind of immune system response as most other allergies. Yes, again I will ask the GP about it tomorrow.

But seriously - if I'm in so much pain I can't do anything except lie on the bed and cry, why would I refuse to take a drug that could stop me being in pain, if it was safe for me to take it? I'm not that stubborn.

Comments

[quiet000001.livejournal.com]

Hey, not to sound like an illegal drug freak, but do you need more tramadol to keep on hand? I can also do MST (slow release morphine) and oralmorph (not so slow release morphine). (And Voltarol, but you dunno if you can have that, so.)

[baratron.livejournal.com]

Heh, I'll try the normal way first :)

[barakta]

Could they give you DHC (dihydrocodiene) which is about twice as powerful as codiene phosphate? I don't know much about tramadol, but someone on my flist has it and it gives her insomnia, so watch out for that. You also want to get more tramadol out of the GP, so you can take it before the pain gets stupidly bad, even if it's only a few days worth and you have to go back to them.

As for moving up the list, definitely hassle them, you need to stress how much this will exacerbate existing health problems and how these prevent you from getting adequate pain relief during attacks. Sadly I think a lot of people with gallbladder issues have regular attacks, so it would definitely need to be your other health issues.

I'm sorry your mum has been unsympathetic about the voltarol - which is wonderful stuff when it works. BUT the side effects are horrible and can cause damage to the stomach. To be honest there ARE better alternatives, some of which are not NSAIDs. You might want to go and talk to a pharmacist and see if they have any suggestions of anything your GP could prescribe giving you good reasons and whatnot - the GP can always get their trusty mims out.

Glad A&E took you seriously, you may need to start counting up your visits there to hassle people with.

[baratron.livejournal.com]

Ah, the paracetamol & codeine tablets I got from the hospital are dihydrocodeine tartrate. I didn't realise that was different from ordinary codeine. Better get some more of those on prescription, then.

The pharmacist idea is good. I've been going to my local pharmacy for 4-5 years and they have a record of everything I've ever been prescribed. Also, the two pharmacists that run the place are lovely.

I don't know how much leverage I have from the fact that the pain is affecting my depression, which has been stable for ages now. Having a history of depression unfortunately still makes many doctors take you less seriously and assume that you're a drug-seeker. I do have the issue that having the pain makes me unable to breathe deeply and increases the risk of chronic hyperventilation symptoms returning (the constant nightmares I've been having are part of that), but again that's a condition that although very common, is poorly understood by a lot of GPs. (My so-called psychiatrist refused to believe it existed even though I showed her the book I had on it! That was the last time I saw her.)

[barakta]

Erm I checked out codeine (spelling right this time) and DHC on the wikipedia (usually pretty useful for these kinds of things) and found that DHC is about twice as effective. I can attest to that having pinched one of kim's once when the shoulder was awful and then being surprised when my own codeine phosphate was less effective. You may have to push for a prescription as codeine is addictive and they are ultra paranoid about that these days. I can usually persuade them to give me 30 tablets which I take a couple of days a month if I'm in too much pain with shoulders to sleep. It breaks the cycle of shoulder pain stopping me sleep and lying on it making the shoulders worse and stopping me sleep more.. I am sure you know how that is.

In my view doctors do not know a lot about unusual medications, they have enough trouble keeping up with basic medical developments. Pharmacists actually understand the chemistry/pharmacology of such things and are likely to know of alternatives to the cheap and generic common prescriptions. I also advise that you acquire a mims drugs manual if you can - I got mine on ebay for 3.75 inc postage. It will give you the basic info on most drugs and whether you should be careful for particular reasons. For example my betahistine should only be given to people with bronchial asthma under close medical supervision.

I would go with any leverage that you think will work. I know that doctors are awful with depression/mental illness, especially if it isn't 'classic' in how it affects you. I saw how kim's depression got worse with her not being able to eat how she would like, it made food issues much worse. She dropped out of uni cos she couldn't guarantee getting access to food, or not being horribly ill. The stress from scary Maths(tm) didn't help either.

The not breathing well thing is worrying, it will almost certainly exacerbate your asthma as well as the the hyperventilation thing that you have. I was so impressed when you were given help for that and that it worked, I would hate to see you reduced to the level of illhealth that you had before that was sorted. Your ex psych sounds like a pain in the arse, I have no time for people like that - especially medical people like that.

I hope the pharmacist is helpful and wish you luck in acquiring lots of pharmaceuticals to make this as bearable as possible till you get your surgery. I also hope the list-masters move you up so you are not suffering pointlessly until then.

Noise

[ailbhe]

I'm hassling as hard as I can!

It's just that it's actually easier to live with my problems than to make a phonecall to or visit the hospital, because of the panic attack aspect.

However. Letter mark 2 being sent soon. Did you get a nenvelope from me?

Re: Noise

[baratron.livejournal.com]

Gods, yes, I understand that. Don't think I'm not sympathetic. It's just that having heard that's how the system works, I thought I should let you know :)

Aha, so the beanie was from you? I thought it probably was, owing to the fact you'd mentioned you had a creature for me. However the postmark was illegible, so I wasn't sure.

Alton Towers & similar

[elfgeek.livejournal.com]

I don't know if you'll be well enough to go, but Aimee is giving away these (http://www.livejournal.com/users/sermoa/646479.html)

Re: Alton Towers & similar

[baratron.livejournal.com]

Thanks, but I'm never short of 2 for 1 entry tickets. Living near Chessington, we get them given away in the local paper - I have at least 6 of them at the moment already :)

(And yeah, I'm probably not up to it anyway :( )