Paper bags

Bring back paper bags, I say. Brown ones, white ones, brightly coloured ones, with handles, without handles, with twisted handles like rope, with flat paper handles, big ones, small ones, plain ones, fancy ones.

What’s wrong with paper bags? They can be strong – Americans routinely use them for their supermarket groceries. They can be reused. They can be recycled. Trees to source the paper can be sustainable. There may well be many other benefits, both commercial and environmental, that I’m unaware of.

They could be used in supermarkets instead of those silly, flimsy little plastic bags for collecting loose vegetables, and would have the advantage of not causing the toxic damage that comes with plastic packaging. And could also transport the bulk of the groceries back to the car (admittedly not so useful for pedestrian shoppers).

Plus, we wouldn’t have this new constant problem of forgetting to take our hideous, expensive fold-up nylon shopping bags with us everywhere. Men find that particularly irksome because they don’t (usually) have handbags.

Bring back paper bags!

Comments anyone? Suggestions?



I’ve been using this drug intermittently but often for ages. More than 20 years, in fact, according to my GP, much to my surprise, and theirs. While my previous GP (Dr J) was at the practice, this was no problem. Whenever I was running out, I submitted a written request for more and picked up a prescription for 28 tablets. Then Dr J retired. Disaster! Now the new GP (Dr M) and the practice as a whole have gone all politically correct and are determined to ‘wean me off it’. My first consultation with Dr M was particularly confrontational and unpleasant. She eventually reluctantly agreed to prescribe 14 tablets per month but actually I’m only being given 7 tablets at a time, and that’s after I’ve begged, pleaded, cajoled and thrown a hissy fit.


This is ridiculous. And insulting. The argument is that temazepam is highly addictive and becomes less effective over time, leading to more and more frequent use and ever higher doses. I believe there may also be an NHS regulation that 7 tablets should be the maximum quantity prescribed at any one time.


It would be interesting to analyse the GP records and see just how many I was using on a regular basis. I reckon I used to get 28 tablets every 3 months or so, and I don’t think that rate increased at all over 20 years. I also tend to only take half a 10mg tablet when needed, very occasionally 1 or 1.5 10mg tablets in extreme circumstances of some kind. I’m clearly not addicted, because I’m not taking temazepam every night. And my frequency and level of use have not increased. So the standard, routine, textbook, bureaucratic arguments that are trotted out simply do not apply to me.


What is it with doctors and the system in this country that makes doctors congenitally unable to consider treatments on an individualised basis? Why are they incapable of thinking for themselves instead of slavishly following rigid guidelines? In particular, why are they unable to treat patients with respect, especially patients who have firsthand direct experience of living with chronic conditions 24/7? We know a good deal more than any general practitioner can about these conditions; we live with them, day and night.


Dr M, for instance, tried to tell me that chronic fatigue is ‘when you fall asleep all the time’. Er, no, it isn’t. And FFS, why would I be sitting here in front of you asking for help with insomnia if I was ‘falling asleep all the time’? Duh! In fact, chronic fatigue often means that you’re too tired to sleep! No amount of telling her that my conditions (antiphospholipid syndrome, Sjögren’s and, especially, hypothyroidism) all cause both insomnia and chronic fatigue cut any mustard with her.


They also don’t take account of the fact that temazepam not only allows me to sleep, it also improves the quality of that sleep, which means that I wake up refreshed as opposed to tired, that I have more energy to get through the day, and fewer aches and pains because my muscles have been relaxed overnight.


And, if they’re so adamant I shouldn’t take temazepam, where are the alternatives? None have been suggested. Nor has anyone shown the slightest interest in investigating why I’m having trouble sleeping. (I think I know why I’m not sleeping, but that’s not the point.)


Even more madly, I managed to persuade a naturopathic doctor to write me a prescription for 6o tablets. I was so desperate I was willing to pay for both a private prescription and to have that prescription dispensed. So I take the prescription to my local pharmacy and ask what the cost will be. The answer came back £27, fine, but they can’t fulfil the prescription because it’s on white letterhead – and should be on a pink form. Whaaaaaaa?!?! What insanity is this?! Bureaucracy gone absolutely bananas. And the ND didn’t have any pink forms and didn’t want to get any for her own private reasons. Amazingly and very fortunately, I think I managed to stumble across a locum pharmacist who wasn’t aware of these idiotic regulations and dispensed the drugs. Result! I’m now set up for months! But Jeez, what a frigging nightmare!



The tree incident

8 September 2014

So far so good...

So far so good…

Jeez, I hope I never have another day quite as stressful as yesterday. And it started out so well too! While Peter was out walking Oscar, I thought I’d take Martha for her first supervised stroll around the ‘grounds’ at Bidborough. She was well up for it, running all over the shop, buzzing up and down the length of the garden. She climbed a little way up a tree, to about head height. That’s OK, I thought. Shows she’s gaining in confidence and competence. She loved that so much she next started on our biggest fir tree (you can guess what’s coming). Full of excitement and OVERconfidence, she went zooming up, way past head height, then stopped and looked down and clearly thought ‘Oh shit, that’s a long way down. Now what do I do? I know, I’ll go higher’. And higher, and higher and……

No amount of calling or enticing tuna was going to get her down. That’s when the real fun started. This tree, you have to be aware, is at least 40ft tall, I kid you not. First I called the Fire Brigade. They won’t come out unless the RSPCA attends and calls them. So I called the RSPCA. They just suggested the tuna route. No amount of pleading that it’s a 40ft fir tree, she’s 4 months old and this is pretty much her very first encounter with a tree was going to persuade them. They apparently had no inspectors available. Gee, thanks. What is the bloody RSPCA for, I ask?! Not impressed.

They suggested a tree surgeon. Great, and on a Sunday too. But that’s what we had to do in the end. Contacts in the village got us a couple of guys, grandad and grandson, from Hadlow. So up went grandson. And up and up and up and up…. Inevitably, the closer he got, the higher she went. Until she was at the very top of the tree, on a spindlyest bendyest bit at the very very top. (So they tell me, I couldn’t watch by this point.) He managed to grab her and get her on his shoulder, ready to transfer to his jacket (why he didn’t take his net up I don’t know) and then what did she do? Of course, she leapt! OMFG.

I was in the neighbour’s garden at this point as that was where operations were taking place so had to beetle back to our house and try to find her. I’d heard Oscar yelp from his crate in the kitchen so I guessed she’d whizzed indoors and past him. Eventually I found her on a low shelf in our lounge wall unit, apparently unhurt. And asking for food!

However, I noticed later she was limping a bit. Eventually we took her to the emergency vets (£200! – hopefully at least largely covered by insurance). A good checkover suggested she’s only either broken or just sprained one or two toes. How many lives has that robbed her of, do we reckon?

I don’t think my stress levels have returned to normal even now. She, meanwhile, is supposed to be resting but is hurtling around my place as though nothing’s happened. She’s still limping ever so slightly but what a lucky girl is she, eh? And thank goodness I haven’t had to call her breeder and tell her I’ve managed to kill her precious little girl within a fortnight – doesn’t bear thinking about.

Why do we put ourselves through this, again, someone remind me? Oh yeah, because we adore them.

Adrenals and thyroid and stuff



Yesterday I had a brief telephone conversation with Prof Lolin, my endocrinologist.

She tells me I have chronically low BP.  Also low resting aldosterone, although it rises slowly to ‘normal’ on standing (I don’t have the figures yet, or the reference ranges).  And I have chronically low sodium, I am salt-depleted and my kidneys are retaining virtually all my salt.

The top-notch medical advice is to take more salt with it!  Specifically, have 2 teaspoons of Swiss Bouillon in hot water every day.  Very pleasant, rather like very weak, vegetarian Bovril!

Already, I think my head feels clearer.  I also seem more relaxed, heart is not racing, and I slept better last night.

I see that symptoms of low sodium can include headache, confusion/altered mental state, seizures, decreased consciousness/coma, restlessness, irritability, muscle spasms/cramps, weakness, tiredness, nausea and vomiting.  That would cover an awful lot of my symptoms, particularly the decreased consciousness, fatigue, weakness, restlessness and irritability.  Good, I hope it’s as simple as some Swiss Bouillon every day!

I have to go back for a repeat Lolinogram (24hr urine test for salt/water) in a month.

Quite how this all relates to thryoid and other issues I don’t yet know.

But I also discover that my most recent thyroid profile showed TSH 0.8, FT3 3.2 and FT4 22.3.  That seems to suggest to me that, while my TSH is ‘normal’, I’m not converting T4 to T3 very well.  I think this needs further investigation and meds adjustment.  Maybe I need some T3 as well, or instead. Or to switch to Armour thyroid.  Or maybe some of my vitamins and minerals are out of whack.  Prof Lolin will also look into all this for me.  Though I fully expect her approach to be entirely orthodox, so I may not get as far as I’d like to with her and may need to seek some additional ‘complementary’ input.

Dentists again


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I think I’ve figured out what’s been making me ill. My dentist! Yes, the delicious sexy Spanish one. Oh no!

When I checked back through my medical diary I could see that every time I’ve had a dental procedure or surgery this year, about 3 days later I’ve started recording aching, fatigue, joint and muscle pain. Feeling pretty much like flu, without the fever. For about a month. That can’t be a coincidence.

I reckon that the stress/trauma/injury of the procedures spark off an autoimmune flare. And I’m guessing the best response is a combination of steroids, painkillers, as much rest as Life will allow(!), and patience!

My naturopath says she often sees this in people with autoimmune conditions.  Some react to the materials used in implants as well.  Although, in my case, I had the same reaction when Jose was just replacing a temporary crown – so before any ‘alien’ materials were inserted.  Could on occasion I suppose be the anaesthetic, but then I didn’t have any anaesthetic at the last procedure I had on 26/9, which was installation of the permanent crown, so isn’t just that either.

Just thought I’d share in case this is useful to others. Also, I feel the dental profession needs to be made more aware of the stress impact of dental work on autoimmune patients.

Adrenal mysteries


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Ooooer, it’s getting even more ‘interesting’ around here.

Right, are you sitting comfortably?  Then I’ll begin…

On Thursday 18th July I fronted up to the hospital for a short synacthen test – to test adrenal function.  First thing consultant asked me when she sat down was ‘Do you have allergies’?  DUH!  I could even see my referral letter in her hand from my chest consultant stating, amongst other things, ‘likely ABPA’ (allergic bronchopulmonary aspergillosis).  So I kinda think the clue’s in the term?  Had she even read the damn letter?  So then she said she didn’t want to do the test because it can be dangerous for people with allergies.  Er, so why am I here then???  Grrrrr.

But she did do a cortisol and various other blood tests.  She said that if the cortisol level came back normal, then that would prove that my adrenals are functioning fine.  But what about, I asked, for instance, DHEA?  Dehydroepiandrosterone  is an important steroid produced in the adrenals, gonads and brain, and needs to be in balance with cortisol.  I also asked about aldosterone, another adrenal hormone.

I had taken with me the results of a recent salivary adrenal stress profile that showed poor adrenal function overall, and with very low DHEA.  Prof Lolin seemed to poo-poo all that.

I had a follow-up consult with her the following Tuesday when, rather to my surprise, she said she would test for DHEA and do a renin/aldosterone test and wants me to do a ‘lolinogram’ (obviously devised by herself) – 24-hour urine collection with blood test to check fluid/electrolyte levels.  She seems convinced I might just need to up my salt and water intake.  Hmmmm, we’ll see.

The suspicion is I might have – wait for it! – hyperreninaemic hypoaldosteronism.  In other words, too much renin, reducing aldosterone, which is needed to regulate sodium, potassium and blood pressure.  I do have chronically low BP (as many of us with APS/Sjogren’s do) and low sodium with high potassium.  Plus an awful lot of the symptoms fit.  Oh, I’m also using a home BP machine to take readings several times a day.  Hang on – must do one now.  (105/65, pulse 84.  That’s high for me, but then I had just done a ventolin/hypertonic inhalation and that can make you a bit hyper for a while.)

Interestingly, Prof Lolin herself has hyperreninaemic hypoaldosteronism.  She asked me what I would plan to do if I do also have this.  (You’re asking ME?)  Because she said treating with fludrocortisone (florinef) (our old cat was on this!) could have negative issues for me.  She went into great detail about why and I fully understood at the time but of course now can’t remember a damn thing! Though I think it was something to do with beta blockers.  Which is weird, cos, with low BP I’m hardly ever likely to need beta blockers.  And in any case, I already know they make me very ill.  Anyhow, I’ll ask again – and take a cassette recorder with me next time!  Prof Lolin says she just watches her salt/water levels and has learned to live with it – but maybe that’s easy to say/do if you haven’t also got autoimmune conditions to cope with.

One issue is that I’d only been off steroids for 2 days when the cortisol test was done and there is some debate about whether that’s long enough to ensure an accurate adrenal assessment.  I shall await all the results and if I’m not getting satisfactory answers I may well go to my naturopathic doctor and see what she suggests.  Tests won’t be done till mid-September anyway!

Oh, and btw, am back on a low level of steroids (only 3mg/day) because it seemed prudent following my bronchoscopy on 24th and because, in any case, I find I feel considerably better on them, dammit.  Will review following Brompton tests at the end of August.

Over and out :-)

Triple steroids for the O2!


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So I was pootling along, doing reasonably OK, reducing steroids gradually.  Very gradually!  I was down to 3mg/day.  Then alternating with 2.5mg/day.

Then I had my dental implant.  And bam!  Down I went for the next couple of weeks.  All the usual suspects – terrible fatigue, loose bowels, muscles – well, what muscles?!  Was struggling to get up the stairs, certainly in one go, would have to stop a couple of times on the way up.  No brain, breathless.  Hadn’t felt so knackered or feeble for about 10 years.

This was happening a couple of weeks before a date to perform at the O2 with all my lovely Rock Choir mates.  But I turned up to rehearsal two days beforehand and felt so wretched I thought I was going to pass out and left early. Everyone was saying how pale I looked.

So I thought, dammit, I’m not going to let these little buggers (steroids, that is) stop me from enjoying the O2.  How often does a girl get to play the O2 for gawd’s sake?  So I trebled my steroids – from 3mg to 10mg for the day before, then 8.5 ton the day itself, 7mg last Sunday, 5mg on Monday, 4mg yesterday and 3mg today.  And of course I now feel absolutely shit.

Not helped by going out all day yesterday to the Cutty Sark and a riverside lunch with partner.  So I used up a lot of (non-existent!) energy and didn’t get my regulation afternoon zzzzz.  But hey, again, it was great and Life has to go on!

It’s only going to get worse over the next couple of weeks too.  I have to be completely off the steroids next Monday in readiness for an adrenal function test on Thursday.  hat’s going to be a stretch and I know I’m going too fast for comfort.  But it has to be done.  Any level of steroids in the system will invalidate the results.  And I don’t want to delay the test because I want to get to the bottom of what’s going on, including why I’m having so much trouble getting off steroids (when taken at the advisory pace).  Also, I have pretty much back-to-back investigations, interventions, procedures, etc. of various types booked over the next couple of months, so if I postpone the synacthen test now, gawd knows when the next chance to do it will be.  By all accounts, the endocrinologist, is a good one, high up in her field, so I’m looking forward to the appointment – as you do!

But at least I made it to the O2 and had a fabbo time!  If anyone’s interested in getting a feel for what we were all up to, try

I shall return.



Dental implant


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Had my dental implant this Monday.  UR1, so right at the front of my mouth.  My previous crown broke off one Sunday afternoon (typical! – these things never happen during working hours, do they?) so something had to be done and the alternatives were a denture (yuk!) or a bridge.  The bridge would have been cheaper, but would have required work on three otherwise healthy teeth, probably wouldn’t have looked as good, could feel odd, and probably wouldn’t last as long.  So I went down the implant route.

I was terrified!  Normally the dentist doesn’t phase me – I get far more anxious over a trip to a doctor (usually because I anticipate, usually correctly, a fight over something or another).  But the thought of a titanium bolt being screwed into my jaw was just a bit of a worry.  Despite assurances that it would be much less uncomfortable than a filling. Yeah, right.

But it was!  Piece of you-know-what.  Just a few minutes of gentle, quiet pushing and shoving, with a little vibration, and that was it.  Job jobbed.  Though that was then followed by about an hour and a half of faffing about, fashioning and fitting the temporary crown.  Now the bone has to heal for 2-3 months before the permanent abutment (post) and crown can be fitted.

I then feared horrendous after-effects with swelling, bruising, pain, infection, exhaustion.  But nope, diddly squat really.  OK, I took 4 paracetamol in the first 12 hours or so, and I do feel sledgehammered.  But then it doesn’t take much to do that to me anyway.  And particularly at present with numerous other issues going on.  Worst problem was the bloody antibiotics I was supposed to take – 500mg amoxycillin 3/day for 5 days.  I took 4 250mgs, got raging diarrhoea and a migraine – as I’d said I would – and gave that up as a bad job.  Lord knows how they’re ever going to be able to deliver antibiotics to me in future, I just can’t tolerate them.  Perhaps IV delivery might help.  But can you imagine the ‘fun’ I’d have trying to persuade the medics to do that?!

But the tooth has been almost painless.  No obvious swelling or bruising.  There was a teensy bit of blood oozing around the gum line for a couple of days but that seems to have stopped now (even with taking aspirin for the APS).  So I’m hoping for a gold star when I go back to see the delicious Jose on Monday morning.  He’d even given me his mobile number and said I could phone any time, even 3am.  And he called me on Wednesday to see how I was getting on.  Not doing anything to quell my raging senile crush!!!

Thank heaven, though, that I didn’t let him give me the 1g of amoxycillin as a precaution immediately before treatment!  I would have been a mess, considering how I reacted to that dose over 24 hours.  Apparently it’s mandatory in Spain before oral surgery.  Not for me, Pal!!!

And there went another £1000.  Poof.  I’m now up to about £2200, and heading for a final bill around £2700.  And that’s still saved me about £1000 over what my previous dentist would have charged.  Jose was offering a cut-price deal on implants while he gets established here in the UK, having been headhunted from Spain on the strength of his implantology expertise.  I can certainly recommend him.  And he’s not hard on the eyes, either!!!




Today I ordered an adrenal stress profile kit from Genova UK (£75).  If it’s like others I’ve done in the past, it’ll be a 24-hour salivary test that I do at home, then just send off the spit (always assuming I can produce enough that is – bit of a challenge with Sjogrens!), then the results get sent to my naturopathic doctor, Franziska.

The random cortisol test I had done about 6 weeks ago showed ‘normal-to-high’ but since that’s (a) a snapshot, (b) only measures one adrenal output and (c) I’m on steroids – that doesn’t really tell us very much.  Dr Graves has now referred me to Professor Lolin, the endocrinologist (so yet another ‘ology’ to add to my large and growing collection!) but I don’t know how long an appointment will take to come through, and I also don’t entirely trust the orthodox medics to either analyse or treat adrenal function thoroughly.

Previous salivary profiles I’ve done in the past have always shown abnormalities and I’m becoming more and more convinced that the steroids have murdered my already dodgy adrenals.  So I need to look into this.  May be barking very loudly up a wrong tree, of course.  I’m just desperate to find some explanations for the crap, and very weird way I’m feeling.

Yesterday, for instance, I woke up feeling awful. Gasping for breath, knackered, wondered if I’d even make it out of bed, let alone work.  But by mid-morning I was feeling OK.  OK, for me, that is.  Today, I woke up feeling much better, thought, ‘oh that’s good, at least I feel better than yesterday’.  Wrong!  Have felt increasingly crap all day.  But in a very difficult-to-define way.  Sort of woozy, out of it, knackered, aching muscles.  But then able (just) to do the shopping, then lightly clean the house and prepare tea for a friend coming round tonight.  Uh?  Seem to feel slightly better on the move.  Oxygen to the brain?  Brain?  What brain?????

Steroids withdrawal is a bitch!


I swear I’ll swing for anyone who ever tries to get me on steroids again as long as I live!

OK, I know you’re supposed to reduce slowly and I probably did race ahead a bit.  Well, maybe a lot!  As I went down from 7mg/day to 3.5mg/day in about a month.  Whereas Menzies Gow (chest consultant at the Brompton) told me to come down 1mg/month.  But I was waiting till I felt stable on a particular level before going down to the next one.  And I thought I was doing OK until I went down from 3mg/day to 2.5mg/day – so a teensy weensy little reduction.  But bam!  Felt absolutely crap!  Depressed.  Knackered.  Arm and thigh muscles aching like mad, muscles screaming by half way up the stairs, breathless, woozy.  Gawd.

Wasn’t helped by a really long, tiring day on Sunday, singing with the choir.  However lovely that was.  And it was hot and I’d gone without sunscreen (duh) so I got burned.  And that made me wonder again if I have or am developing lupus, because sunlight is a major trigger for lupus and could at least partially explain why I felt so awful for the first few days of this week.  Plus, as well as a generally pink face, I had prominent, round, bright red blotchy patches over my cheeks (like a little painted Russian Doll) and nose, like the lupus malar rash.  Don’t have blood markers for it as far as I know, but that doesn’t necessarily signify anything, as we know.  So must discuss/investigate at some point.

Meanwhile, I must try to be more patient about steroid withdrawal.  Never my strong point, patience!


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