This is a Test

Just testing to see if my blog uploader is working.

UPDATES!!

It has been a while for sure since I sat at this commuter to write a blog and I thought a quick update first on my systemic sclerosis, the medicine I am taking seems to be doing a great  job on me.  When I met with my specialist three weeks ago he wrote on my notes “astonishing”  this was in relation to the tightness that was in my arms legs and shoulders.  My skin was stretched so very tightly that of course it hurt a lot.  As it slackened off I found myself being able to get up from the floor without  help which is great, I can wring out a dish cloth instead of leaving a soggy messy one in the bowl and I can also open a can on my own.  Whilst these things do not seem high on the can do list believe me they impacted a great deal on my life and so he relief is beyond words.  On the downside I have my bingo wings back!  As my skin slackened off gradually they returned.    Ah well we can’t have it all.

NEW TRIAL

I cannot mention the name of the trial I am hoping to go on but will update later in the blog if and when I am informed  I may do so.  That is if I actually get on it.  My recent echo showed such good results that I was told by the doctor who did it that if he had not known I had ph he would not have realised from the results.  Now as more tests are carried out we will wait to see if I am bad enough to go on this.  I have divided opinions, sad if I cannot as this will likely be my last trial, I have done so many but pleased that my condition seems to be stable. I sill put this down to the denervation which seems to have stopped my pressures rising.  It was a huge thing to undertake but is amazing the difference it makes.  I am told it has been approved in China, I may have the wrong country but anyway approved somewhere but not here yet  so I wait with bated breath for it to be  offered. Though they had hoped one hundred would trial this it sadly turned out to be just 17.  I do understand people being nervous about it but  now the proof is out there maybe others will feel they can do it when and if offered.  

Now I must get on and go next door to see Izzy.  She is growing so quickly and it makes me smile when I look out of the window in the morning to see her walking down the road with her backpack on to catch her bus to school.  Now more independent each day I feel pride but also sadness that she has left behind all those childhood ways that pleased us so much.  We did our best helping Danielle and later Chris raising her and feel we did a really good job.  Our role now is not so great but we are still an integral part of the family and always will be.  It always reminds me of the Abba song “Schoolbag in hand she leaves home in the early morning”  The song is about regrets that you did not do all you hoped to do with them and they keep sort of growing into the next phase of your life without your realising it.  I always think of it with my daughter too.  Time moves so quickly and things take over and before we know it they have grown and gone on heir own sweet way.  ……. ah well such is life.

Danielle does say that without us and our help she would not have been able to progress in her career as much as she has done.  Colin has taught her much about management and people! and we are a phone call away to offer any help we can do I do feel pleased of the difference we have made to their lives.  More importantly though we feel so blessed to have been able to guide and help Izzy on her way, from a new born to the 12 year old young lady she is today.  

We are meeting friends for lunch today and hope when we return to get a picture of Colin and his bike to put as a profile one on the sponsorship page.  Thank goodness for our family next door who have set this up for us.

LEJOG

Colin is intending to ride from Lands End to John o Groats, the whole length of Great Britain for US.  World awareness day for ph  is on May 5th so he will begin his mammoth ride a few days earlier so that he is actually riding on that specific day.   

Colin likes solitude fortunately and he has chosen to do this on his own.  Of course you will need to see where he is each day, that is a given but I am hoping to have a word with our very own Sarah Marshall whose hubby Phil also did a mammoth fund raising.  How many of us woke in the night just so we could follow his blue blob on the map.  We have no clue of how to go about doing that but hoping they can give us some pointers.  

Our own ph society which amongst the trillion other things they do for us publish our Emphasis magazine and we are hoping that a feature will be done in that to raise more awareness.  Mary who does the features will be in touch with us at a later date re this.  Sean is helping us too as he is talking us through the various aspects of fundraising and I know he will only be a phone call away.  (He did actually ask if Colin knew what he was taking on as they had looked at the map and went WOW) Yes he does.  

Let me tell you a little about Colin.  He has always been active and threw himself into teaching children at Sea Scouts how to canoe safely.  He led many walks with them over the Yorkshire Dales and our beautiful Lake District.  Trying to make sure our Izzy enjoyed his outdoors activities he has taken her up mountains and made sure she grew to love the country as he did.  When we lived in Spain he joined the local Mountain Walking group and it was not long before he was leading walks in the mountains of the Costa Blanca and ultimately he was invited to join the groups A Team.  One had to be invited to join this group and there were not many asked to do so.  They were and still are considered to be the elite of mountain walkers that venture out to do amazing walks over almost impossible terrain and abseiling down places etc.  In fact the  Guardia {Spanish Police} called upon this team to help them in the search for a missing walker.  When the A Team arrived one could hear an intake of breath as these mostly retired walkers turned up.  However they quickly went on to realise they could not cover the terrain as these more experienced walkers and decided to set up camp lower down the mountainand let the A Team carry on!  Respect for this team grew ever stronger.  

Colin appreciates all that has been done for me and all of us inflicted with this terrible disease.  We need to raise awareness yes of course but we also need more funds so in appreciation of all that has been and is still being done for us all  he has decided to do this challenge.  Not bad for an old guy of 74 years.  

He is in training now, this cannot begin on the day the challenge begins.  Fitness has to be built up gradually and he goes for many a 70 mile ride on a Sunday or takes the motor home to different places that are challenging for bike riders and throws himself into each day with gusto.

We are planning to spend time in Spain on the lead up to this challenge as it is very taxing for bike riders and where we used to live teams from all over Europe do their training there.   Colin will be doing a lot of riding over there to make sure he is fit for the job.

He has already booked accommodation for most his of the journey so he is aware that he cannot slack at all,, the miles must be done but he has a purpose and that is to do all he can too give back to the A Teams that keep us all alive.  To say thank you to the ones that have gone before us, to try to help the ones that will come after us and  to honour all inflicted with ph and just generally do all he can for our society.   

I could go on but he has just shouted up the stairs “don’t be saying too much! “  Those that know him know he is a private person and so to put himself out there is a huge step for him believe me.  

I can only hope that all those that are able will go onto the JUST GIVING page when it is organised and show your appreciation for everything that is ph.  

I will from time to time send snippets of him training and tell you where he is up to in his planning to keep it in your minds,  I feel sure you will appreciate what he intends to do!

Well enough for now  I will write a normal blog later but this needs to be out there now, so I am told by those in the know!  

Love as ever

Carole xxx

PAYBACK !!

It has been a while for sure since I sat at this commuter to write a blog.  This one begins with my telling you what Colin is up to as we hope to raise money for ph.  He is intending to ride from Lands End to John o Groats, the whole length of Great Britain for US.  World awareness day for ph  is on May 5th so he will begin his mammoth ride on the 3rd May so that he is actually riding on that specific day.   

Colin likes solitude fortunately and he has chosen to do this on his own.  Of course you will need to see where he is each day, that is a given but I am hoping to have a word with our very own Sarah Marshall whose hubby Phil also did a mammoth fund raising.  How many of us woke in the night just so we could follow his blue blob on the map.  We have no clue of how to go about doing that but hoping they can give us some pointers.  

Our own ph society which amongst the trillion other things they do for us publish our Emphasis magazine and we are hoping that a feature will be done in that to raise more awareness.  Mary who does the features will be in touch with us at a later date re this.  Sean is helping us too as he is talking us through the various aspects of fundraising and I know he will only be a phone call away.  {he did actually ask if Colin knew shat he was taking on as they had looked at the map and went WOW}  Yes he does.  

Let me tell you a little about Colin.  He has always been active and threw himself into teaching children at Sea Scouts how to canoe safely.  He walked with the children following him over the 3 Peaks and took many children, along with other adults of course tracking and camping in our beautiful Lake District.  Trying to make sure our Izzy enjoyed his outdoors activities he has taken her up mountains and made sure she grew to love the country as he did.  When we lived in Spain he was a member of the A Team walkers.  One had to be invited to join this group and there were not many asked to do so.   They were and still are considered to be the elite of mountain walkers that venture out to do amazing walks over almost impossible terrain and abseiling down places etc.  In fact the  Guardia {Spanish Police} called upon this team to help them in the search for a missing walker.  When the A Team arrived one could hear an intake of breath as these mostly retired walkers turned up.  However they quickly went on to realise they could not cover the terrain as these more experienced walkers and decided to set up camp lower down and let the A Team carry on!  Respect for this team grew ever stronger.  

Colin appreciates all that has been done for me and all of us inflicted with this terrible disease.  We need to raise awareness yes of course but we also need more funds so in appreciation of all that has been and is still being done for us all  he has decided to do this challenge.  Not bad for an old guy of 74 years.  

He is in training now, this cannot begin on the day the challenge begins.  Fitness has to be built up gradually and he goes for many a 70 mile ride on a Sunday or takes the motor home to different places that are challenging for bike riders and throws himself into each day with gusto.

We are planning to spend time in Spain on the lead up to this challenge as it is very taxing for bike riders and where we used to live teams do their training there from all over the world.   Colin will be doing a lot of work over there to make sure he is fit for the job.

He has already booked accommodation for most his of the journey so he is aware that he cannot slack at all,, the miles must be done but he has a purpose and that is to do all he can too give back to the A Teams that keep us all alive.  To say thank you to the ones that have gone before us, to try to help the ones that will come after us and  to honour all inflicted with ph and just generally do all he can for our society.   

I could go on but he has just shouted up the stairs “don’t be saying too much! “  Those that know him know he is a private person and so to put himself out there is a huge step for him believe me.  

I can only hope that all those that are able will go onto the JUST GIVING page and show your appreciation for everything that is ph.  

I will from time to time send snippets of him training and tell you where he is up to in his planning.  I need to keep this story active so none of you forget!  I feel sure you will appreciate what he intends to do!

I do not know how many people who have their names on the T-shirt are still alive.  I would hope all but truly do not know.  If you zoom in and see your name or know of somebody still with us please let me know.  

Well enough for now  I will write a normal blog later but this needs to be out there now I am told by those in the know!  Please be as generous as you can.  PH is such a great cause. I will speak again soon.

Love as ever

Carole xxx

Well that sat on the computer for a while so just a general update of us here today.

It seems the medicine I am taking for my systemic sclerosis is doing a good job on me.  When I met with my specialist three weeks ago he wrote on my notes “astonishing”  this was in relation to the tightness that was in my arms legs and shoulders.  My skin was stretched so very tightly that of course it hurt a lot.  As it slackened off I found myself being able to get up from the floor without  help which is great, I can wring out a dish cloth instead of leaving a soggy messy one in the bowl and I can also open a can on my own.  Whilst these things do not seem high on the can do list believe me they impacted a great deal on my life and so he relief is beyond words.  On the downside I have my bingo wings back!  As my skin slackened off gradually they returned.    Ah well we can’t have it all.

I cannot mention the name of the trial I am hoping to go on but will update later in the blog if and when I am informed  I may do.  That is if I actually get on it.  My echo shows such great results that I was told if the doctor that did it did not know I had ph he would not have realised I did.  Now as more tests are carried out we will wait to see if I am bad enough to go on this.  I have divided opinions, sad if I cannot as this will likely be my last trial, I have done so many but pleased that my condition seems to be stable. I sill put this down to the denervation which seems to have stopped my pressures rising.  It was a huge thing to undertake but is amazing the difference it makes.  I am told it has been approved in China, I may have the wrong country but anyway approved somewhere but not here yet  so I wait with bated breath for it to be  offered. Though they had hoped one hundred would trial this it sadly turned out to be just 17.  I do understand people being nervous about it but  now the proof is out there maybe others will feel they can do it when and if offered.  

Now I must get on and go next door to see Izzy.  She is growing so quickly and it makes me smile when I look out of the window in the morning to see her walking down the road with her backpack on to catch her bus to school.  Now more independent each day I feel pride but also sadness that she has left behind all those childhood ways that pleased us so much.  We did our best helping Danielle and later Chris raising her and feel we did a really good job.  Our role now is not so great but we are still an integral part of the family and always will be.  It always reminds me of the Abba song “Schoolbag in hand she leaves home in the early morning”  The song is about regrets that you did not do all you hoped to do with them and they keep sort of growing into the next phase of your life without your realising it.  I always think of it with my daughter too.  Time moves so quickly and things take over and before we know it they have grown and gone on heir own sweet way.  ……. ah well such is life.

Danielle does say that without us and our help she would not have been able to progress in her career as much as she has done.  Colin has taught her much about management and people! and we are a phone call away to offer any help we can do I do feel pleased of the difference we have made to their lives.  More importantly though we feel so blessed to have been able to guide and help Izzy on her way, from a new born to the 12 year old young lady she is today.  

We are meeting friends for lunch today and hope when we return to get a picture of Colin and his bike to put as a profile one on the sponsorship page.  Thank goodness for our family next door who have set this up for us.

Have a great day and take care each and every one of you.

Carole xxx