So nice to see you

I paid a visit to my Rheumatologist on Wednesday. This was a twelve week follow up from my last appointment in December, (no, I couldn't get the maths to add up either) postponed a further month by the hospital for one of 3 possible reasons, which one they did not specify.

First of all they have changed the waiting area, you check in one area and then are directed to sit in one of five jump seats along a narrow corridor facing a brick wall. This doubles as the chiropody area too so we were treated to a long monologue by an an elderly lady in a wheelchair parked at right angles so the corridor was not blocked. She talked of neighbours long dead,businesses lost and a full rundown of all her relatives faults. No actually she didn't talk she barked, droned and berated, monotonously for hours, or so it seemed. After a few minutes I approached by a nurse and told that I was 'next but one' but there would be a slight wait. The chap on the end groaned. He was the 'next'. He told me his appointment was some 75 minutes earlier. We sat and stewed on a boiling hot day in a corridor with no air. Eventually 'next' was called.

Two other couples then arrived all at once, names were taken and the nurse told me not long to go now, but it could have been worse, the previous two patients hadn't turned up. We all changed seats so the couples could sit together. the nurse came and suggested these late arrivals could go and sit in the coffee shop and she would fetch them. Luckily I had my bottle of water to sustain me. The elderly lady was taken to chiropody, the chap before me came out.

Some twenty minutes later another nurse asked if I had been forgotten. She disappeared, then came back and said "Doctor is reviewing your notes, you''ll be in soon. " Another ten minutes passed. Finally, one hour and forty minutes after my allotted time I was called in.

The consultant beamed, "I haven't seen you for a while have I?"

Er No. I had a locum last time and and the time before that and the last one was horrid. She mentioned his notes. I told her I did not like him. "He's from New Zealand," was the reply, "but he did put you on Methotrexate ." (Only after I had had specifically asked for another treatment when he had tried to end the consultation).

We discussed my diagnosis of Chronic Lyme. "How are you now? " I told her I was better than I had been for 10 years, was responding to the treatment, had good blood test results, all my 'lumps' had disappeared from the palms of my hands and other than the fact my hands are still curling up at night, I was heaps better. I asked whether or not I should see someone for the tendons in my hands which have been noticed by everyone I have seen for the last few years. They are thickened, painful and very stiff in the mornings causing this propensity for my hands to curl up.

"Can you make a fist?"

"Well yes, that's the problem, too much fist", she pushed my wrists up and down and cast a cursory glance at the back and front of my hands.

"OK then, you don't need to see anyone, you can move your fingers." Eh???

I demonstrated my ability to bend over, stretch up, put my arms above my head and behind my back.

"I am concerned that this private doctor is charging you too much. How much do you pay?" I named a figure I knew was about one quarter of her consultation fee as WH has seen her privately in the past. "Oh that's not too bad then." Not too bad, it more like a brilliant bargain. This chap is obviously not in it for the money. "What about the private prescriptions?" I didn't tell her I had stockpiled from the NHS prescriptions and would only need a few. I again named a ridiculously low figure. " You're quite happy then?"

Almost deliriously so I told her. I had found a doctor who believed me, a treatment that works and after 15 years I am improving ,albeit slowly and probably not completely. I am doing more, I had spent the previous morning gardening, I could go out more and what is more I have the stamina not to crash completely afterwards.

"Well we will have to agree to differ then. Your treatment is unusual and not at all main stream. It is very controversial; there are a lot of opponents both here and in the USA" The words left unsaid told me that she was one of them. I already knew that.

"I don't think there is any need to see me again until you want further hep from me. So nice to see you again."

The consultation was over. Why on earth did I bother going?

I don't want to go to Chelsea

That used to be one of my favourite songs, by Elvis Costello for those too young to remember.

This weekend however, I am going to Chelsea Flower Show and yes I really, really want to go. WH's business very very ocasionally has it's good side. This is one of them. One of his suppliers is sponsoring a show garden and we got tickets to go on not one but two whole days.

It's a bit of a marathon from here so we're staying up in town, not often I can write that I tell you, not least because the price of the hotel is only twice what the parking would cost! I'm planning a lovely weekend of gardening, bit of sightseeing and maybe some shopping too. Oh and WH gets to come along with his credit card too.

Just hope that daughter No 2, who is days away from giving birth, doesn't choose this weekend to get going. After I've been to the show she is allowed, but fingers crossed, not before, please.

Moving like a tortoise

Our house move has now been on the cards for 12 weeks. We are still no nearer to completion of our purchase. We finally received a draft contract this week as the vendors solicitors, two rival firms, have now stopped squabbling amongst themselves (and all over £20 too, it's disgraceful) only to discover yesterday that some probate certificates were missing and which the vendors solicitors had neglected to notice. Thank goodness our lady is on the ball.

So it's all back to the drawing board again. We can't now even get the key until we have been on holiday so it means that any work we need to do wil be after that. We want to extend the kitchen and at this rate we will not get planning consent until at least October which means we will have missed the whole of the summer, the light nights and good weather. We are now talking of having it ready for Christmas. Big deal. I was looking forward to spending the summer in the beautiful, south-facing garden and eating-out on the permanently warm sun terrace. I was looking forward to the extra space and the quiet away from barking dogs and noisy neighbours.

The original plan was to have moved in 2 weeks ago and the vendor was at great pains to ensure that we completed within 6 weeks. Shame that all the delay has been caused by his team. Of course he will get his money in due course, as for us, we are left with the feeling that we have wasted the whole of this year.

Lyme disease week 15

I've been on high level antibiotics (Doxycycline) now for 15 weeks. I'm doing OK, my activity level is 50% of what it was when I was well, ie 15 years ago. It is about 500% higher than when I was at my worst last autumn. I've had a few problems with the dreaded fungal attack but with a judicious dose of Diflucan once a week and by taking high dose probiotics I now have it all under control. The worst aspect is my high susceptibility to sunburn which is a small price to pay for such a brilliant recovery. This week it's no bother at all, having had wall to wall rain for the last 10 days (ever since my visitors arrived!)

I see Dr Thomas Stuttaford in The Times yesterday was writing about the perils of Lyme which seems to have become headline news over the last few weeks. One of the points he makes is this: if left untreated, about 60 per cent of patients who have had Lyme disease develop severe arthritis. Well stone the crows, my Rheumatoid Arthritis isn't rheumatoid after all. Actually we had already decided that. Despite the fact I am taking absolutely no medication whatsoever for Arthritis, it is going, I can move, the swelling is going and best of all the hard lumps which I had on the palms of my hands and the soles of my feet have gone. Completely. Bloods taken last week revealed, as the nurse reading them out to me said " better results than you have had for about 20 years". Markers for infection and arthritis were almost normal.

Now for the sting in the tail. A consultation with my GP last week made clear that although I was recovering better than anyone had hoped, the practice partners had had a meeting and confirmed their earlier decision not to prescribe any more of the antibiotics as they are "off licence". I must get them via a private prescription from my private consultant, for which of course, I must pay.

OK, I have posted on this topic before, but that was before I had definite proof that the treatment is really working.

You know what, NICE sucks and so does the NHS. I have been unable to work for 15 years, I finally have a treatment that is working but hey, as if I am not disadvantaged enough already, I have to pay for it myself. No matter that 2 years of NHS time and money was wasted trying to find an arthritis medication to which I was not allergic and pain relief for a condition I didn't have.

Old Southern Bluegrass Riverside Bogswamp Family Band

get a load of this.

My nephew is the lead guitarist and writer of the piece. I am so proud. A real musician in the family.

All change on the western front

I know what the seaside landladies call change over day now.

Today I have some very old family friends arriving for the rest of the week. Their 22nd year here and probably the last time in this house before we move. This morning I was up with the lark changing rooms round, making beds and shooing the cats off clean linen.

The weather does not look promising but I'm sure we'll find plenty to do, we always do. Tonight I'm cooking a Greek meal so I hope that will inject some sun at any rate.

Watch this space for news of what we get up to.

Not much to say

...other than it has been an extremely busy week so far:

The Painter is in residence sorting out the bathroom
I have spent HOURS on the phone to solicitors, estate agents and the like.
Mr Hippy Chic has been to visit and to collect his post.
WH's No 1 Assistant is coming back from India and bringing his wife to visit too. Yay!
I dug up a huge bush in the back garden.
I'm sunburnt badly from the effects of gardening, so....
I am now sporting a big hat, cotton gloves and fetching zinc white sunblock.
The holiday confirmation arrived.
I have been packing for the move.

I am still feeling so much better. ......