New house, new car, new baby?

We got the keys of the door on Monday. I bought a new (second hand) car on Wednesday. On Friday we are still awaiting the appearance of the 4th grandchild.

All week my stepdaughter has presented at her local maternity unit at 9am each morning to be induced. They have tried 5 times. Today she is 16 days overdue and is scheduled for a ceasarian this morning. To date they have had no beds. I hope to God they have one for her today.

She has gestational diabetes and group B strep. She was told she would not be allowed to go more than 7 days overdue as there was a risk she would have a very big baby. She was also told it would be 'out by Wednesday' - last Wednesday. She was told she would have a ceasarian last week. She was told she could not go more than 14 days overdue as it was dangerous. All conflicting and all disregarded as the time went on.

Now my anxious, depressed step-daughter, longing for her first baby, has been living on tenterhooks since last Thursday. Her partner has lost a week from work running backwards and forwards to the hospital each day.

Is this what the NHS calls primary care? Primary nightmare more like.

Read NHS Blog doctor on the subject of maternity care here

Key of the door

We finally got the key to the new place yesterday. Even that didn't go according to plan, we should have been all sorted by 12 noon but the solicitors for the vendors didn't let anyone know that they had received the money and that we could fetch the key so we were hanging round for 3 hours.

Then my car started making a very loud noise again and I decided not to drive it. So tomorrow we have to go and get another one, in a hurry, which is not always such a good idea. The current one had only just been serviced and had it's MOT, sailing through with flying colours. Now it needs 4 new tyres, the radiator has sprung a leak, an oil pump is leaking and the steering has gone. In 5 years I have never had any trouble with this car, now it has decided to repay me big-time. Even WH who likes to keep a car until months after anyone else would have given up said he's not spending all that money on it and it has to go.

Stressed right out

Haven't posted for over 2 weeks, a record of a sort for me. I wasn't even on holiday.

The last fortnight has been almost a nightmare, they say house moving is stressful, well my solicitor has been conveyancing for over 30 years and she has never had a conveyance like it. After numerous false starts, a withdrawal, a re-market, several rows with estate agents, a complaint to the Law Society and numerous other set backs, we *might* exchange contracts tomorrow. I feel like I have taken up residence in the solicitors office and have wasted so much other precious time in the process. 16 weeks since I first viewed and we're still messing about.

Keep your fingers crossed it goes through OK. We need it to. What the heck, keep everything crossed, please.

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. ......

In my garden this week

One of the biggest clumps making an impact is Euphorbia characias ssp wulfeni which looks stately and imposing when viewed from the patio. This particular bush wasn't planted by me in this place, I had an older bush probably 10 years ago which succumbed to the inevitable winter wet and was no more. Suddenly last year up came a seedling in an entirely different place and it grew to it's full 3 feet in less than 12 months. I see now that there is yet another seedling close by. One for the transplant list, to be taken to the new abode later in the summer.

My other bloom this week is the perennially lovely Granny Bonnet or Columbine, properly known as Aquilegia vulgaris, the European Columbine.

My strains mostly came from seed obtained from Joan Loraines's garden, Greencombe at Porlock a good few years ago. the really blue blues seem to having all disappeared due to their promiscuous nature. They most likely interbred with some of the others I had too, so now all I have left is a mish-mash of hybrids. They're early this year too and somehow better because they stand out more because of it.

Hopefully this will be the first of a weekly(ish) series through the summer, like last year. As the house we are moving too has it's own lovely garden they'll be some reports from there later on. I just wish I could show you the beautiful Wisteria sinesis which is already adorning the pergola.

Rocking with the Hayseeds

This time last week I was off to see my fave band Hayseed Dixie at Exeter University. Once again they kept the audience bopping away for a full two hour set, full of gems like their take on Walk this Way, Holiday and Dirty Deeds. I prefer their original material and their best on the night (and on their new album) has got to be She Was Skinny When I Met Her although John Wheeler aka Barley Scotch dug himself into rather a deep hole in the intro given the age and stature of some of the audience (myself included).

I have now found that I can re-live some of their concert material for free on a brilliant site of their archive material and YES! it's free in line with their philosophy of giving good value for money and playing for expenses only. Have a good laugh at gems like Kirby Hill and listen to the speed and skill of Don Wayne Reno's banjo playing and Dale Reno on the mandolin. Barley Scotch isn't bad on the fiddle either.

If you like rock and you like something different you'll love this.

Dr Wonderful

I saw my Lyme doctor yesterday. He is very pleased with my progress and more to the point so am I and so is WH. Daily I can feel the layers peeling away and I am becoming almost human again. Eleven weeks of the antibiotic therapy is beggining to give some lasting benefit. I'm trying for another 12 weeks by which time I should be part way there.

Two things conspire to scupper my progress, the first is inbuilt, I am reacting to the sun big-time. I have to keep out of it and, for a died in the wool sunworshipper and lover of the great outdoors, this is hard. I wear factor 50 all the time but even so, a short drive to our nearest shops (6 miles) gave me a substantial burn on my right hand. Dr Wonderful suggests that on my forthcoming trip to Greece I stop the meds a few days before-hand to get the drug out of my system and don't take it for the duration of the trip. If this works I will be really over the moon.

The second blur on the horizon is the very real possibilty that my GP practice will not now prescribe me any more antibiotics beacuse they are 'off licence' in this treatment. It won't stop me taking them, however, as I shall obtain a private presciption and get the drugs elsewhere. It does beg the question though, which I have posed here before, would the NHS prefer for me to remain ill rather than stump up the cost of the drugs which are making a real improvement to my health for the first time in 15 years?

All gone south

Thanks to NHS blogdoctor my hits were at an all time high yesterday and the pattern looks like being repeated today. Hello to all of you medics out there, hope you learn something about how not to treat your patients when you read my experiences!

I think however my blog template now has a neurological illness in common with it's owner. For some reason all my side-bar stuff all went south during the day and best of all I didn't even touch it.

I examined all my code and it looks like it should do. I hope this is just one of those routine blogger blips and it will all slide back to it's rightful place.

Somehow I am not convinced. Watch this space.

Aren't our service industries wonderful?

I had a summons yesterday morning because BT said I had not paid mother's last phone bill.

The bill was dated 4th April, I paid it on 10th April and the summons was dated 16th April. I was so mad and I getting very angry on the phone and I KNOW it wasn't that girl's fault so I just had to put the phone down.

When Mother died I called up and told them. I was told that I would have to transfer it into my name if I wanted to keep the line temporarily, which I did. I didn't get a bill at all, so on 4th April I phoned them and they said one had been issued but I had obviously not received it. It must have been lost in the post. I decided there and then to have it cut off as we were not doing all the trips up there that we anticipated and anyway we had now sold the flat. The girl said she would reissue the old bill then cut off the phone then a new bill would come which would be less than the first so not to pay that, just pay the final one which I did and of course she was right because it was £26 less than the first bill.

Then I get this summons for non-payment of £32. I went ballistic. WH handed me the phone and found my cheque book whilst I was dialling the accounts department. First off they said "Oh it's a new account and because you didn't pay your first bill they summons you immediately. "

What within 12 days? (or actually 6 working days)

When I said about it having been mother's phone I was then told "Oh you shouldn't have changed the name on the account because if it's a deceased account they give you 3 months to pay."

Hey? I did that because BT told me to.

Then they said "Yes but it doesn't alter the fact you had not paid the first bill on the account," so I reminded the BT person that I called up in the first place because I didn't get one.

"Oh well that's due to the Post Office, not BT. You will have to complain to them"

Looking on my calendar there were 6 working days between the date of the final bill and the date of the summons, Easter was in the centre which reduced tham a bit. The bill arrived on Fri 6th because they only send them out second class and I paid on Tues 10th in my bank, the very next working day. Can't see how I could have done it any quicker. That apparently was not acceptable. Yet when I eventually move house I have to give them at least 5 working days to move my phone line.

It then took a further week or 5 working days to go through BT's computer system and did not show up as a payment until 17th the day after the summons. Interesting the summons itself took 4 days to reach me, second class post of course. If BT are so hung up on short time scale maybe they should use a faster delivery service themselves.

I then pointed out that my other (home) BT account is paid by standing order and is £80+ in credit as their monthly payment scheme does not allow me to make a smaller payment and I only actually pay for the line rental and get cheaper calls elsewhere. I was told "Oh we don't check your other accounts even if they are the same address."

So actually BT still owe me money, and I am wondering what on earth this country is coming to and how many other people have fallen foul of ridiculous situations like this.

First the NHS is taking it's last dying gasps now our (once) national telephone service has gone the same way.

Compare and Contrast

I know I know, no post for a week then two on the same day but I am celebrating.

Just compare this post written last November and my other post today. What is the difference?

I'll tell you what.

I have a diagnosis after 15 years. I am not a basket case, I have a bacterial infection. That infection is the causative agent of Lyme disease. Most importantly I am having treatment. After 11 weeks treatment I feel wonderful, I can function more than I have been able for about 10 years. Yes I know I have wasted 15 whole years of my entire life, a whopping 29% of it. But now I have hope, recovery and and best of all some normal life.

The disturbing thing is that none of this improvement is down to our wonderful NHS. I found the cause myself (after I recognised a picture of the Lyme rash as one which I had had). I was advised by the Eurolyme website and I found a private doctor who had the training and the skill and most importantly the interest to want to treat me. In 15 years all the NHS wanted to do was either ignore me, send me to a psychiatrist or give me unproved, dangerous, half-baked quack remedies. No-one wanted to treat me as a whole person with one illness.

Even now I have a treatment I will have to pay for it myself shortly via private prescriptions. My GP practice said that they will no longer be able to provide prescriptions for such a 'controversial' treatment as it is 'off-guideline' and unproven. OK , so they would rather I stay ill then? Even though my private doctor is in full contact with my NHS ones the NHS ones choose to disregard his expertise and go their own way. Even my NHS arthritis consultant has written to my GP (after being informed, out of courtesy, that my medications had changed and that I had a new diagnosis) and stated that I should stop this new treatment immediately. Why? because I am getting better?

I am now in total dispair at the state of the NHS. It seems the powers that be would rather follow regulations than provide what actually works and they also seem to want to keep people sick for long periods rather than in the first instance test them for their condition and secondly treat them when they do get the results.

I find I am in increasing agreement with John Crippen, the NHS Blogdoctor. I was never politically minded as a youngster, I was always too busy on other things. This life of mine has taught me otherwise, after all, I have had 15 years to think about it.

The whole situation in this country with regards to ME and Lyme disease is a shambles. It appears that there are dark forces at work keeping patients with these illnesses in thrall to the pyschiatrists. Far be it from me to speculate further here, but a quick of review of some of my sidelinks will give you food for thought enough to keep you reading for a twelve-month.

Just ponder this, how much money would have been saved if I had not been on benefits for 15 years and instead had a full range of tests and consulations followed by a course of treatment for up to 2 years. Now of course my condition is chronic, harder to treat, has given me other associated disorders and I might not recover completely.

Now multiply that figure by the estimated 240,000 ME suffers in this country, let alone those with undisclosed Lyme. You can draw your own conclusions.

What I've been doing this last week

A whole week's gone by and it has flown. I'm knackered. Anyway here's a brief resume of my activities:

1. Dug a whole huge patch of my back garden and removed oodles of Three Cornered Leek which had taken over. It was only AFTER I planted it I read a quote from Alan Titchmarsh which said it was a 'pernicious weed' and never to plant it in a small garden.

2. I have redone the stone border around 90% of my back garden. It's so unusual to be able to garden so early in the year, the weather was fabulous last week and the ground so dry it was almost a pleasure.

3. Spent 3 hours shopping at Cribbs Causeway on Sunday, bought a few gems and joy of joys Anne Harvey has reopened her shop so that was cause for more expense. ( Yes I know it's part of Alexon and NOT an exclusive designer shop but I like their stuff and it FITS)

4. Got sunburned, in April!

5. Emptied the whole of Mother's flat, disposed of the rubbish and cleaned it all out. That feels so good.

6. Saw middle step- daughter and bump last night, not long to go now. She was working, so we just called in briefly on our way past.

7. I have been playing Hayseed Dixie's fab new album. As usual I prefer the original material but they just bring a smile to my face and a bop to my step.

8. Reorganised my entire garage contents ahead of our imminent move; if we're keeping it, it's in a plastic storage box, colour coded and labelled in order of importance. Following this activity I had a trip to our local tip with a whole car load. Spring is for cleaning. Right?

Do you notice anything different reading all this??

I am feeling a lot better and I have the energy (and a little weight loss) to prove it. A trip to Dr Wonderful on Monday will hopefully confirm we are on the right track. It has only taken 15 years.

Spring

Reminds me of a silly poem my Dad taught me as a child:

The Spring is sprung
The Grass is riz
I wonder where the birdies is?

The bird is on the wing
Don't be absurd
The wings is on the bird.

(Attributed to Spike Milligan)

Singing in the trees at the bottom of my garden, that's where they all are!

It's warm, it's sunny and the birds are singing, what more could you want? I love this time of year.

Kalo Pascha (Happy Easter)

It's the biggest travel weekend of the year and our baby is off to New York today for the start of a trip round the US for three months. She's coming round to say good bye any minute. WH is feeling very apprehensive, he's going to be on tenterhooks for the next three months.

Later we are taking her car up to No 2 daughter to use until her baby is born in early June. The rest of the weekend we'll be spending with the other tribe; with a birthday to celebrate, Easter Egg hunts to go to and a whole long weekend of good weather to fill we'll probably be exhausted by Tuesday.

Seeing as the weather yesterday with a brilliant blue sky, reminded us of our beloved Greece, I'll wish you Happy Easter in Greek.

My Visual DNA

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Cool or what? Found this and I just HAD to do one. I love it.