Stacie at our conference.
It's not long now until our long awaited conference. We all get so much out of these and it is a time to actually meet in person all the people we feel we have come to know well through the ph websites. This year my specialist Professor David Kiely is speaking about ph so I am looking forward to that but one of the highlights will be to see our very own Stacie Pridden talking with Ian Armstrong about blogging. As I am a newbie to blogging I have asked, and received help from Stacie, Kath Graham and Tess Dunn so owe them so much that I can at last get mine out there.
Through blogging we learnt of Stacies life whilst waiting for her transplant. Her blogs were entertaining, funny, sometimes sad and gave us an insight into her every day life. We saw too through her eyes the anger that people just didn't sign up to the organ register This does infuriate us as some of the self same people that refuse to register, or can't be bothered, would be happy to take an organ should the need arise. So frustrating!!!!! Most ph patients will have recognised something of themselves when reading these blogs and it was good to see them being read by so many so as to bring awareness about ph and its effects and physical limitations this disease brings to us. I am looking forward very much to this spot in the conference given over to Stacie whilst Ian is talking to Stacie about her blogging.
Isn't nature wonderful
Looking out from my window slightly to the left we have a park. It is called Manor Heath. Looking straight ahead we have the moor, called Skircoat Moor and to the right a large triangle of grass. This triangle holds many memories for me,
On this triangle stood a huge chestnut tree, a truly beautiful tree that gave off its fruits of conkers in plentiful abundance. It's a tree I used to sit under whilst waiting for the bus bringing my son back from school. It's a tree where we used to pick conkers for the children and string them and them put in vinegar to harden so they could try to beat their friends at conker fights. A tree that had stood and grown in this spot for many many years. It was a truly beautiful tree.
We were shocked to see on this tree one day a huge green cross. On enquiring why it had this cross on we were informed that the tree was diseased and needed to be removed. The branches were huge and could be dangerous if one fell and there was a great likelihood of that happening with the disease.
My friend was horrified and asked the council if they would consider chopping down all the dangerous parts, injecting the tree with some kind of disease killer once the trunk was open and then sculpting something with the huge trunk. It was agreed and now the work has begun. The tree has been chopped down to 9 feet and work has started on sculpting two squirrels out of the trunk. Squirrels were chosen as we have so many due to trees and bushes all around us, hence many squirrels! We are waiting with bated breath to see the end result. Everyone is so relieved that something as beautiful as the tree was is not to be completely removed and destroyed. We need to preserve nature and in this instance a good thing will have come out of the bad. Hurray for my friend and the council that saw fit to agree to such a suggestion.
When I look out of my windows I see nature in all its glory, from the park, the moor and now there will be the two squirrels that will be sculpted from the tree. All is well again with the world
Old news made new.
I see that the Russinas are once more taking DNA samples of the bodies found of Czar Nicholas 11 and his children to establish if two more bodies buried 70 yards away are those of two of his five children. I am finding this all rather odd. I have always followed the history of the last Czar, not least because we could have saved all the family if our royal family had heeded their pleas to allow them to come to England when they knew the fall of their empire was imminent. Now whether our Royal family did the right or wrong thing in not allowing them to come over for fear of reprisals is another matter What puzzles me is how the story of where the bodies were first discovered has now changed!
Years ago I well remember waking to the news on a Sunday morning that the bodies of the Imperial family had been found burnt and the bones thrown down a disused mine shaft. Now they are saying the bodies were found buried, I wish they would make their minds up as to the correct story. We are going to Russia in May next year and I hope the true facts will be out there then. It is a story that has always fascinated me. I believe it was said that the girls had many jewels sewn into their gowns when they fled the palace. Some sources said that the bullets fired did not kill them all as the jewellery saved two of them from dying due to the bullets not penetrating their bodies as the jewellery acted as body armour. There were rumours that Anastasia had survived, and indeed there are books written about this girl who claimed to be Anastasia, this was never proven This was proved to not be true by by DNA samples taken from the cousin of the Czar, our very own King George V. Quite how this semi literate girl managed to pull off such a stunt as to even having her supposed Royal aunt agree that yes, she was Anastasia one will never know. She certainly knew lots of private things that had gone on inside the palace. Anyway she did very well out of it as she gained many believers who took care of her and paid for her upkeep for the rest of her life.
Then there are the doubters of the said DNA tests, stating that it was in the interest of our royal family to NOT have this girl declared to be part of royalty. We will never know the complete truth.
This family certainly had their fair share of notoriety. Some of this was due to their dealings with Rasputin, deemed to be a holy man who had , supposedly, healing powers. As their son was a haemophiliac it was understandable that they trusted in him. The problem was that he was supposed to be unduly influencing the Czar, and in particular Alexandra in the matters of politics. Rumours were rife about an affair between the couple but this has never been proven.
One thing that did come to pass was a prophecy made by Rasputin to Nicholas to say that were he, Rasputin, to be killed by government officials then the entire family would be killed too, by the Russian people, their very own! This prophecy did come to pass as the Czar, his wife and all their children were killed by assassins during the Russian Revolution.
If I have bored you then so sorry but this period in the Russian history has held a fascination since I was about 13 at school. We had an amazing history teacher who made history come alive. She made us really "see" and live history. I will forever be grateful to her.
Our holiday begins tomorrow
Right, motor home packed up, food in fridge and freezer, petrol tank full to bursting. Just waiting until morning to set off. We are going out for an early dinner tonight as house fridge is also cleaned out.
I will end on this note. Mercy, my trial coordinator from the Royal Hallamshire rang me today. I am booked in to the hospital on the 11th November for an overnight stay to begin the tests and then, hopefully, will leave the following day with my first months supply of pills for the PH trial. This trial can be found on google ASK1 GS-US-357-1394 if you should wish to look it up. My hope is that it is a successful trial without too many side effects! I still have neuropathy from the last one!
Have a good day and keep as well as you can everyone xxxx