Monday, 28 December 2015

Christmas News

Hello everyone.  I do hope that your festivities went well and that you managed to stay as strong and healthy as we with ph can do.  It was a pleasure to read that doctors at the hospital allowed
Kath Graham home for a few hours on Christmas day.  It seems the infection is getting under control but care needs to taken to ensure her new heart and lungs remain as healthy as possible.  Kath does much for us to make people aware of just how much organ donation has helped her live a full life. So pleased she got to spend a few hours with her family and the new puppy.    

My clinic                                                                                                                              

Two days before Christmas I needed my warfarin and my full blood count so off we went to the hospital, walking as the car park is generally full.  We took our time and Izabelle was so thrilled as her grandad gave her a grown up umbrella to carry.  It doesn't take much to please this girl and so off we trotted.  The rain was bad but the wind was even worse, blowing the umbrellas inside out.  Izzy just loved this as grandad showed her how to turn the other way and hold the umbrellas out where they corrected themselves.  I went on ahead of them at a certain point as I wanted to get booked in.  The clinic was not full and my wait was only a short one. I have learnt not to make an appointment but to just turn up and it works.  Of course all the staff know me as I have been attending over five years so it is always quite a good time really.  

On booking in I took a seat.  Colin and Izzy has not arrived and I was thinking i would have had my bloods done before they did at this rate.  I sat next to an elderly lady who was telling me that her husband had died on Christmas Eve over twenty years previously.  They had just had a grandaughter two days earlier and he was sitting on the sofa holding her.  He turned to his wife and said when she is older I shall sing to her.  He had a great voice apparently.  He then handed his grandaughter over to somebody saying he felt unwell and collapsed and died!  I was so saddened for this lady as the time of the year that should be joyous was forever tainted.  However she does have such precious memories of a young lad she met at school when they were both five, of growing up together and a friendship that grew.  When they were around ten years old he told her that when they were old enough they would marry and have ten children.  Conscription came about and off he went to the army and they drifted apart. However on his return he found where she was and they married.  The ten children turned out to be just one, a very much loved daughter.  

On hearing her story it made me be thankful that despite my terrible condition i am still here and still determined to fight for a better life and a cure, trialling new drugs as I go along.  We cant waste days feeling sorry for ourselves can we when none of us, even healthy ones, know what is around the corner.  This was a fit and healthy man, always biking or hiking, not a lazy sloth and so his life ended so soon.  Don't let it happen to us.  Fight with every ounce in your body of determination.  I have a lot of living to do yet as I know you all have.

Family time

December 25th was such a lovely day for me as I had both my children and my darling Izzy around along with Danielle's’  boyfriend Chris, a lovely man.  Both my children have lovely partners, it hasn't always been so and so we have encountered problems along the way but hopefully  they are both set on a path with people walking by their sides that love them and want to do right by them.  I am so happy right at this time, long may it last.  So the day was a joyous one, with much laughter and much love around our table.  It is a day I shall remember for ever and look back on it with such lovely memories.  

Colin took some pictures.  We rarely are all together at the same time.  I really love that we have these and we laughed a lot whilst they were being taken as Colin had to run so fast to get settled before the flash came!  Haydn's' beautiful girl friend Anna is not on them as she was with her mom for the day, travelling by taxi to see my son once he was home again.  We shall print some of these off later as despite hoping to do it on the day the time just flew by too quickly.  

So sad. 

Izzy rarely sees her dad.  His choice not ours.  However he had cancer a few months ago and it seemed to have all been removed so it was with horror that we heard it was now in his stomach.  Though I don't believe he was the right guy for my daughter and certainly not a good father to Izzy as he rarely bothers to see her he is still her dad and my shock on hearing this news was huge.  I do hope the chemo and radiotherapy cure this young man.  He has just had his longed for son and I hate the thought of him no longer being in the world.

The Rain Came Down

Goodness me have we had some rain here in West Yorkshire.  There are floods all along the calder valley.  The lovely canal and river walks I used to love to take have been badly flooded, with  people walking up to their thighs in water!  Certainly I have never seen it like this in my lifetime.

Two members of our family are with us now and they drove up from Poole, a lovely drive until they came off the M1 and then the detours they had to take to get here are quite unbelievable!  However they are here now, safely ensconced and we are so looking forward to spending quality time with them.  As they live so far away this time is so precious and special.  We are so pleased that they were happy to make such a drive up to us to spend this time.  Last night after a lovely meal that all approved of very much we all sat down and the memories came flooding back of earlier days, past years etc.  Such a great time but I had to leave them as my bed awaited me.  They totally understand this and are happy to see me trot off and continue their talks with just Colin playing host.  This time is lovely for our old friend Roy who lives above as he comes down to share a drink and a natter.  His family went to Scotland to celebrate Christmas but he knows we are here and he is welcome.  

I went to the Boxing day sales as I just wanted to get out of the house for a while and mooch around!  The shops were not overcrowded and I managed to pick up two so cute sleep suits for a friends baby, a lovely top for my daughter and pjs for Izzy so all in all I was pleased.  Don't you think these sleep suits for a new born are the cutest things!  So pleased for the family of this child who had an anxious few weeks whilst tests were carried out on this little one in the womb as they feared a problem.  All tests now completed and he is a healthy little baby just waiting to grow big enough now for birth, really a pleasing story.  

So this blog is rather boring.  That is because we are all so tied up with our families and friends at this time of the year we don't seem to live a “normal life”  I haven't seen the news and not watched the tv for a few days except…… Masterchef 

One thing I must say though for those that are lovers, of Masterchef as we are.  YEAHHHH Mark, well done young
man for becoming the winner of this competition.  I loved him from day one and said in an earlier blog my money was on him.  He just let himself down once in the competition when he made a salad in one of the rounds , a very definite mistake and indeed he was told off by the judges.  We did too screaming at him when he was making it that he was so wrong to do this.  Next year I bet he is back actually judging the meals as they do.  So pleased, it really made my day.  Well done young man and he will go on to be a top chef without a doubt.

Trial drug

Sadly I am feeling worse day by day.  My breathing is definitely  worsening.  Now is this the trial drug or my ph which we knew was getting worse before I began the trial.  We really don't know but my appointment on the 6th of January can't come soon enough!  Will post what is decided after I have seen my specialist.

Thank you everyone
Our numbers on this group are steadily rising.  So pleased that they have found us, one newly diagnosed patient being told of this site by her hospital who directed her to us so well done all of you for the love and care you show all the newbies on here.  That even hospitals are aware of us and all we all do for each other is such an accolade.  Anthony Roe who began this group did such a great job.  He would love to be seeing how well it is doing. You all deserve a huge pat on your backs. 

The new year is fast approaching so let us all continue to fight but to help and encourage each other on this site as we are doing.  The fact that we have so many on here and we generally all get on so well and feel a very real friendship for each other is amazing.  I am so proud to be part of this ph family  Go into the new year with hope, real hope for us all.  I forever believe we are so close to a normal life once again.  

Go well everyone and much much love from your ph sister here in West Yorkshire amongst the floods!

Carole xxx

Sunday, 20 December 2015

Being accused of being racist!!!!!!!!!

Getting it in the neck!

Oh my am I in deep trouble by some members of the pah society.  Why, well I asked somebody who wished to join our group the question of why they did. their reasons etc.   I sent her the FIRST standard message that goes something like this.  Hi, I note your request to join our closed ph group.  May I pease ask your reasons i.e. do you or a family member suffer from ph.  Please respond so I can process your request as soon as possible.  The new ones on here will KNOW this is the message I FIRST send. We need to know do they have ph or have a family member suffering with it before we allow them to join.  We need to keep the group closed to protect our members.  Many ask to join the group just to up their friends numbers etc.  Once I receive a reply from my message where they explain their prognosis I then add them to the group, generally with a note to our members asking them to welcome so and so to the group and I am sure they will find much needed support. On receiving no reply to my first message by this girl  I checked with her timeline and saw that her cousin suffers from a terrible condition called IH.  Another rare illness but nothing at all like ours .  I saw nothing to suggest ph so I couldn't see how we could offer support.  I then sent another very short message, remember she had received  the longer first message.  In the SECOND message I said I felt we were not the group for her {remember I had seen her timeline and the terrible condition her cousin has} though I asked again if she had ph.  I was awaiting her response when  I opened my Facebook page this morning to be met with her shocking post, all lies and all saying I had felt by LOOKING at her that she did not have ph.  Well we all know we can't tell by looking that we have ph, such rubbish.  All she had to do was reply to my FIRST message and say yes she had ph or words to that effect. Had she responded in that way I would have added her.  I did NOT say she couldn't become a member if she truly had ph.  I was waiting for a response  to my private message and what a response I got. She chose not to respond to my message privately but to go and post publicly a damming post about me, all lies  I hasten to add.

I was shocked on opening up my Facebook yesterday morning to see a very vitriolic abusive message from this girl saying I had refused her because I felt she did not LOOK  like she had ph. She didn't tell the full story , and I certainly had NOT refused her, I was just waiting for her to answer my question  do you have ph?  Her message about me was shocking and so untrue.  It went like this.

Carole Ayrton doesn't feel I belong here...... She says By looking at me she doesn't feel I have PAH therefore this isn't the group for me ..... like wtf???????   Question???????  How exactly does one FEEL that someone else does not have a life threatening illness and therefore is not qualified to join a Facebook group?????  Last time i checked people were not diagnosed off feelings but actual tests that are done in a lab of some sort|  Why the HELL would I request to join this group if I myself didn't have this or someone close to me wasn't suffering from this?  Your response to my request is disgusting and absolutely offending!!!!!!

Smells like racism if u ask me!!!!!!!!

She also showed my SECOND but NOT MY FIRST message to her which she had failed to respond to.

We know just how badly we need support and it may well have been that she had been too ill to respond to my first message, hence my checking of her timeline to see if I could see anything to suggest PH so I could expedite her request but on her timeline I saw nothing to suggest that she had ph BUT I did see that that her cousin has IH, nothing we could relate to at all.  How can we support an illness we know nothing about.    Why did she close her message by saying I was racist just because I asked her the question again did she have ph and that I felt this was not the group for her.  I never said she is racist against me, I have NEVER said anyone was racist to me if I did not get the response that I wished for. She wrote in the post that her cousin has IH and she herself was being tested for it.  In other words she admitted herself she doesn't have ph so quite why I then received hate mail from other ph sufferers I will never know.

Now of course I hope she finds a site that helps and supports her but clearly we can't offer her support for an illness we know nothing about.  Her meds will be nothing like ours, I checked the treatment side of her disease.  Now am I wrong to say I felt this wasn't the site for her.  Being a co admin of the ph group takes time and dedication.  We want to keep our members safe from others who wish to use our site for different means.  I know she wasn't doing this, she did need support as her cousin truly has a rare illness but all I wanted to do was steer her towards the group she needs.  Was there any reason at all to be so offensive towards me. I feel she was taking her anger out on me.

What shocked and hurt me more were the remarks of other ph patients who called me shameful, that it was bullshit and disgusting etc.   One said I needed to apologise to Nicole, why would I.  I had done NOTHING wrong, she was just so awful.  She left Facebook of her own accord.  I feel that she left because she knew she had been found out to be a liar, her timeline said it all. For those that sent me hateful private messages and for those that said it was shameful about the way I treated her I hope that you too took the time out to do your research, as I had done very carefully before I sent her the second message.  I have noticed that I have not seen one apology from these people, though all I have done is try to protect them.  I did note though that one very lovely person DID check her timeline and saw what I saw, she was headed for the wrong group.  I saw another message saying that both sides needed to be looked at this picture, as indeed it did, thank you so much for stating these facts.

For those that said she was in the wrong and for those that have offered me support I thank you for this, it means a lot.  I spent over an hour crying and my anger too was swelling at the injustice of it all. It therefore was so lovely to see all the messages from you, very kind and very well received.

The site is called Pulmonary Arterial Hypertension not IH  I am always happy to try to steer people who try to join but who don't have ph to the correct site.  Anyway it is all done and all over with now but please may I ask members when or indeed if they ever see such a post as this remember to do your homework first, as I did, by checking out everything we can about the person BEFORE hate mail is sent to any administrator of any group.  It takes time out of our lives keeping the group safe from people who shouldn't be here.  We don't just click a button and all done.  We have to send messages, research their timeline, in some cases such as this check treatments and meds to see if they are on the same regime as we are.  We don't want another thread such as the last one.

Let's try to keep our page safe and nice and supportive to all members.  We suffer a terrible disease and stress is so bad for us.  Please lets all try to not judge each other too quickly.  In the past when I was a raw member of the group I made mistakes such as this and hope never to do so again. I know that in the main this is a fabulous group, begun by our so very lovely Anthony Roe who we have sadly lost.  Lets keep it a clean and nice page with certainly no talk of racism on here.  That remark is so offensive.  We are all the same under our skin and  we are all varieties and shades of, some white, some black, some yellow etc.  We are all battling the same disease, lets try to do it without stressing out others with hurtful remarks. Lets all now get on with preparing for the festivities that lay ahead, so much to look forward to.  I know I have plenty to do before then so I shall be busy, busy , busy, particularly as we will have whirlwind Izzy with us for most of the time!

So this now needs to be put to bed BUT I wanted people to know the whole truth of what happened.  I needed to let people see that I do my very best for this site, that I and Paul work hard to keep us all safe from people wanting to just use this page for their own ends.  Now I have posted this I want it to end.  Lets all get on with living our lives now, this is all over and done with, to that end I am deleting her post and the thread.  We don't want it to continue, whats done is done.

Its a bit too soon for drinking surely

We are going to be having rather a lot of fun days at our house as school has closed and Izzy will be spending her time with us.  Grandad is always a firm favourite with our little Izzy.  Today when she arrived she wanted to have two dollies, one for her and one for grandad.  Off they went with Izzy playing the roll of mommy and grandad was her son, called sweetie.  The game played out very well with her telling "sweetie" what to do with his baby.  The end result can be seen on the picture with the two babies having a drink stop of vimpto, though it does so look like a glass of red wine!  One for the family album I think.

Later we went to a friends house where we, along with a few others, had been invited for a coffee and some refreshment in the shape of pizza and coffee, plus cake or mince pie.  It was so lovely to be sitting with friends in front of a roaring log fire and Izzy loved playing silly games with everyone joining in. So nice to have good friends.  This friend in particular had been a friend of Colin since they began  senior school. Indeed it was he who introduced me to Colin and to everyones surprise we were married four months later!  We had a lovely relaxing time before we headed off to our garden centre.

Izzy had said she wanted another unicorn for Christmas and a blanket!  Quite why she wanted a blanket we do not know but hey, that is kids for you. When we arrived at the centre we saw that there was a Santas'  grotto and asked if there was a space for Izzy to meet santa.  We were fortunate as we only had to wait a few minutes and then we were in!  The grotto was lovely with lots of decorations and plenty of chairs for the little ones to sit.  Stories were told by both Santa and mummy Claus before the children were asked to go up for a picture with Santa and receive their gift.  On opening her gift imagine all our surprised faces as we saw that she had been given a unicorn!  She was squeeling with delight and we too were so happy at this result.

On looking around the centre I noted a beautiful throw, blanket thingy. All snuggly it was and perfect for throwing over Izzy when she is on the sofa having mommy cuddles or to keep her feeling safe when she is poorly, the cocoon syndrome.  I couldn't buy it then as she was with me but I shall return today as she is home with mommy and so leaves me free purchase this.  Result all around, well so long as they haven't sold out of them when we get there today.

Right, time to go.......... thank you so much for reading this blog, for those that like the page thank
you so much too and for those that share a huge THANK YOU!!!!!!!!

Love to each and ever one of you.

Carole xxx

Wednesday, 16 December 2015

Holidays are coming!

Its Christmas!!!!!!!!

and don't we know it, with the shops all blasting out their carols and the christmas lanes full of gift ideas.  For ph people it can be incredibly hard.  We want to not be the "party pooper" but oh how hard it is not to be.  Evenings out mean we spend the day in bed to prepare our bodies for the jollities taking place in the evening and the following day in bed to repair our bodies.  No matter how hard our families and friends think they understand our illness they can't possibly really KNOW  just how hard simple tasks are.  Why,  well because they see us carry them out from day to day with no real idea of just how difficult it is for us to do.  They can't see our pain and they cannot really comprehend how hard it is for us to breath.  Don't get me wrong, I am not saying our partners are not the best people to have around us, of course they are and without them our lives would be oh so much harder BUT....... no matter how hard they try to understand it is only us living with ph that really gets the full picture.  Today Colin, my husband was cleaning out the fridge, a job I would have done weekly before ph but now find this task so difficult as bending down and getting back up is so hard to do.  Now it is done whenever I nag him and as he was doing it he said it was not a job a man thinks about very often whereas for a woman it is just part of our weekly task on our to do list.

Oh how I am longing for the cure, the days when I can do a task without thinking of the energy it takes or how difficult it will be for me to recover after the particular task is done.  Friends and family see me carrying on as normal when they are around with no idea of just how hard it is and how much I will suffer afterwards.  Is there any way for us to get them to comprehend, well no, not unless they carry out these jobs with the straw in their mouths and the peg on their nose, this is the only way for us to get them to see how hard life is and I bet many won't do much or carry on for long coping with everyday tasks in this way. Do I want them to fully understand, no I don't because then their pain would be even harder than it is now watching us living with this disease.   I prefer them to see me getting on, albeit not as good as before, but to have no comprehension of just how much we ph people suffer.

Do I wish we showed it on our faces just what is happening inside, no I don't.  The fact that we don't is an advantage, the only good thing we have going for us.  I don't want people to be able to see just how much ph robs us of our insides working correctly, of the problems it causes us daily.  So I shall just do what we all do and carry on until the cure is found.  In the meantime I shall listen to my own preaching and be thankful when I am offered help, I shall accept it gladly with a smile and learn to sit down and let them get on with it.  Please all do the same over the festive period, don't burn yourselves out.  It takes us so long to recover from sheer exhaustion we get easily so don't put yourselves into the firing line for it. I shall also give thanks to my oh so patient husband for all he does for me with never a complaint.  His life too has been turned upside down and though he can never comprehend quite how I am feeling his strength, love and encouragement are a huge help to me in my battle for a life with ph.

Most of all enjoy this festive season.  It is a time families come together to celebrate and to share in the joy of this time of year.  Maybe, just maybe in 2016 the eureka moment will be here when the cure is found, we don't know but I do know it WILL come, just playing the waiting game. To this end I reposted a video that was sent to us from Kath Grahams'  Facebook page a while ago back onto mine,  Should you wish to see this video from researchers here in the UK where they tell of the first time ever we have real hope, then  check out my timeline.  The video is green, well not really, its in Kaths' beautiful green garden and I only reposted it yesterday so not far to scroll.

Hospitals at Christmas

We know some of our ph family is or will most likely to be in hospital sometime leading up to Christmas.  Kath Graham, a double lung and heart transplant patient two years ago is currently at Papworth, though hoping to be home for the weekend.  Kath has done so much to promote organ donation, working tirelessly to get people to "see" the end results as she tells them of how her life has been transformed since the operation.  She has been begging people to please listen to their hearts, if you would accept an organ you should be prepared to give one.  Let us hope Kath is back home for the weekend with her loving family and the new member, their puppy.  Chin up Kath, we are all rooting for you.

Family fun over the festive period

We will be having my daughter and her guy Chris, plus our Izzy and my son Haydn for Christmas lunch.  So looking forward to this and to that end I have begun to prepare part of the meal.  I have baked two desserts and they are now sitting in the freezer, albeit one of them does not have its lovely meringue topping on yet, can't do that until the day.  If you can do a little to prepare now then do so, don't make it too overwhelming on Christmas day.  My cake was baked and iced weeks ago and last week my mince pies were cooked and frozen.  None of my family likes Christmas pudding so instead we are going very simple with home made deep apple pie or a lemon meringue pie alternative. Its not about the food, its about being together but my puds do go down well.  Added advantage is that if there is anything left over from dessert we are having more family coming to stay over for three nights from boxing day onwards so a ready made dessert for one night will already be in the fridge.
Colin will be in charge of any games we play,  always a wag he can decide which game when and always gets a laugh.  Izzy will, of course, be too excited with her new gifts to be bothered about any of this.

Trial Update

My trial co-ordinator rang me today for an update on how I am feeling since last week.  The answer I gave her was just the same, no change either for the better or the worse.  I had hoped for an improvement in my condition but I am worse on the meds than off it.  We decided that I would continue for the next three weeks until my hospital visit on the 6th January, then it will be decided what to do.  Has ANYBODY reading this come off ambrisenten, which we all believe is not working for me any longer and gone onto macitenten.  The reason I ask is that though i know it is the same group of drug and so essentially will not work for me if ambrisenten isn't some people say they have changed and feel better.  Any messages re this would be so gratefully received.  So in the meantime I am still on the trial.

All change.

I have a tv in my bedroom.  Now I know we are not supposed to as it doesn't aid sleep but it sure helps me on the days and nights when I spend a lot of time in bed.  My tv was quite old and had begun to lose its colour which meant Colin had to come in and do his magic, I am no good with technology.  As I also now have spondolitus of the neck, {severe} it has meant always turning my neck at an angle  to see the tv where it rests on a shelf which creates even more nerve pain.  Enough was enough and I asked that we change it to one on the wall, a curved one so that it rests in front of the bed. Colin agreed so off we went on our search for the correct one  I didn't want a huge one, just a nice neat one, on a tilt bracket that would do the job.  Oh my what a world of televisions are out there now.  Lots of research was done and away we went but on seeing the particular one we decided on we were told they didn't have the size we wanted in stock.. Back to the drawing board, or in this case computer to find it on a site that had it and could deliver quickly. waiting now for said delivery.  Whilst we were in the shop I saw some nice new phones and so decided to change ours for them.  Very stylish but it takes time to get all the numbers in from old and learn a new way of doing things on it.  Again Colin came up trumps in-between buying, copying, cutting and fitting many of my photos into walled frames.  I was so tired of having frames everywhere on tops of units but didn't want to get rid of having my family around us so it was decided this was the way.  The end result it really pleasing and on searching for new photos on our photo app it was so nice to be able to sit and pick out newer, updated ones.  Now I have asked him to do a family photo on christmas day and make sure they all leave with a copy already in a frame, well we do have loads of those spare now!

Enough!  Now all go off and get yourselves organised to have the best Christmas you can.  I do hope you all stay well my ph family.

Much love to you all

Carole xxx

Sunday, 13 December 2015

Yes, success with this bowl!

Yes, something to show at last.

Went to my pottery class and there were two of my bowls ready for glazing.  Brilliant.  Choosing colours was difficult as so many different hues of each colour, and which lucky person was to get which bowl dictated which colour!    They were going into the kiln once we left the class and I can collect them on Thursday.  I do hope they look decent when they come out,

In one of my blogs from last week I posted as to how very poorly I felt in my last pottery class and needed help to get home.  As a consequence I admitted that I just threw things at my plaque and didn't even bother to look at it when finished, I was just too poorly.  However it was such a lovely surprise when I saw the result this week as it looked really good!  Not dried or glazed of course but still, very very pleased with it.  I won't see this one now though until the new term.

I am going to my Art studio to get some of my clay to bring home so me and Colin, plus Izzy can mould  things with it this weekend for fun.  It will stay fine if I keep it in plastic between collecting it and using it.  Looking forward to a busy Saturday!

Well here are a couple of pictures of one of my bowls, though I did two my daughter actually wanted one!!  I had purposely chosen a colour that would fit very well in her lounge but wasn't sure she would really like it, just hoped.  When she saw them she asked if I had really made them and appeared to be impressed. She said the other one, the one obviously not in this picture, would look nice in her lounge so I gave it to her.  I hope she really likes it and that is doesn't get "broken" in a few days!

Once the bowl was safely in place at  my daughters Danielle went to empty the dishwasher.  In doing so she broke a breakfast bowl.  Izzy immediately went into the lounge, picked up my bowl and took it to her mommy saying "oh its alright mummy grandma made you a bowl, you can use this".  Needless to say my daughter did not use my bowl for her breakfast cereal. Not bad for a first attempt?


Watching Katherine Jenkins and some of her guests were the above group from Britains Got Talent, what a lovely group of young men singing amazing songs from Les Miserables, so pleased they have proven to be more than a one off wonder.  One of my favourite musicals and they are singing it superbly.  How lovely to hear the harmonious voices of these guys, I hope they continue to do well.

Missing a loved one

Christmas frenzy is going on in shops and homes at this time of the year,  Please take a minute out of your lives to remember those who are gone, who won't be sitting around your table. There will be a face or faces missing from sitting around the tree and accepting or handing out presents,  it may be family members who have died through lots of circumstances and your pain of missing them will be real but please all remember the members of our ph family too lost to this cruel disease,  These ph members who lost their lives fighting this battle gave a lot of themselves to the doctors whilst fighting this disease,  Lots will have been learned by watching the progression of their ph,  All of this helps us today with new medicines developed through seeing how they coped with the meds they were taking,  Just take a couple of minutes to think of all the families who have lost  a loved one in this battle, they deserve at least that.

PH trial visit

On the 9th December I had my first visit since going on the tablet for the trial I am doing.  This was a great time to be going as Laura Parker was actually staying on ward M2 so it meant I could get to see her and spend a little time with her. Laura is such a lovely lady and has had some issues with the water retention.  She was going to have a tap fitted so she could deal with this at home.  How I hope it works as she has a husband and son missing her very much at home.

I was also fortunate to be able to meet up with Gem Cousins, though only for a short time and saw her new engagement ring, it looked great in the pictures but even better on her finger in real life, really beautiful.  Gem is doing really well and looking amazing.  She did her best walk test EVER so that is really pleasing to know.

Unfortunately for me I did my WORST walk test for years.  It didn't give me any surprise though as I have been getting more and more breathless since taking the trial drug.  The headaches that kicked in after ten days are way better now though, just a residual ache all the time with the occasional punch to let me know it is still around.

On talking to my specialist he thought I should come off the trial meds.  We have no way of knowing if it is a worsening of the ph or if it is the trial drug.  I am very tenacious though and said I didn't feel I wanted to come off the drug so soon as I would have let everyone down by not completing the trial.  His response was that he was more concerned with me than any trial as the object of the game was to keep us as well as can be expected with this condition.  Anyway after an in depth talk we decided that I would stay on the drug another week and see if the symptoms reduced or I felt much better.  We shall see how I go on though I have to say I wish I had more oomph than I have now.  I certainly want to wait at least until my next trial visit at the beginning of the year.  We shall see, I am always hoping for an improvement as my body accepts yet another drug amongst all the others we take daily.

Lunch with my walking group

As you know I started a walking group a few months ago for people that wished to walk and make new friends.  It was a group for people that couldn't run up and down hills as I certainly cannot do that.  It turned out to be a huge success and I have made some really lovely friends.  At one of our coffee stops on the walk it was suggested that we have a lunch together before Christmas and so it was arranged.  What a super time we had, there was no shortage of topics to discuss and it is always amazing to hear about the differences we have in the things we like to do.  I discovered that one of the group is a belly dancer, she is in her seventies!  One of the group loves to decorate cakes, I am not very artistic in this field.  Another one of the ladies loves to "mess about in her kitchen" and I bet she produces some great things.  Her husband is always very knowledgable on cameras and photography so Colin tends to pair up with him and gets some great tips. Yet another member of the group works part time in a charity shop, good for her for putting something back into society.   Our next walk will be next Thursday, just a gentle stroll and somebody else has come online and asked to join the group. It will be so nice and I have to say she can't be with nicer people as we all get on so well.


Well here she is!  So endeth the peace and she has homework to complete before we can get down to making anything with the clay.  I have been looking around for things we can use as templates or things to make nice patterns so that she can roll them into the clay.  I am really looking forward to this messy time around the ugly table we have!  Cant wait for the new one.

Hallelujah at last!

Got a letter in the post yesterday and the guy who bumped our car has at last admitted responsibility for it.  Our cheque will be soon on its way but as I said it was never about the money, it was a principle thing.  I hated the thought of an outstanding claim never being admitted, hated the thought of it always being on our file.  So once again we will be clear on all our insurances.  Result.

PH new members

As always there are more and more people wishing to join the PAH society.  This is both sad and pleasing to me.  Sad because of course we would not wish this on anyone but pleased that they are looking for the support and encouragement that I know we all try to give them.  Strength in numbers is great and it warms my heart when I see just how supportive you all are to people you have never met.  It just goes to show that we are a true ph family, caring for each other across the miles and trying to encourage each other in our fight for a better life whilst we wait for the cure we so desperately need.  I thank each and every one of you for all the care and support you have given me across the years, so much appreciated.  To

all the new ones coming onto this site may I tell you that you will never be sorry you joined our group and never be scared to ask any question. One of us will have gone through it and know what you are talking about.  Nothing will seem too trivial to go on this site.  If you are scared or worried then just POST and you will receive support by the bucket load.  Asking questions is what it is about and replying to people that ask the questions if you know the answer is great, even if you don't then please offer support to those reaching out for it.

Enough from  me,  my grandaughter now needs attention so I must go.  Will update you next week about my progress or maybe deterioration since the trial drug.

Have a lovely weekend and thank you so much for taking the tine to read my blog.  Remember that if you look onto the right hand side of my blog you will see other blogs posted by incredible people who have helped so many in this fight, just click and read and then add them to your list.

Love to you all

Carole xxx

Sunday, 6 December 2015

Yet another war!!!!!!!

So we are at war!  Was I surprised, not really.  Would I have said yes were I asked to vote for war, in all honesty I would have to abstain from voting.  I really dont know what the answer is.  We can bomb Syria to smithereens but there are factions of the rebels worldwide, how can we get them all.  All countries are home growing them.  I don't even understand why we still pay benefits for the families living here who go over to join their men.  Just giving them more money to make their bombs.   For me once they leave this country to go to Syria I would then stop all benefits and refuse to allow them back into the country.  If the ones whose wives follow on with their children wish to come back I would also refuse.  The men that go cannot hold their family in much regard so why then leave it for us to pick up the pieces. The money keeps dripping from our coffers into their bank accounts, often it is our money paid for by benefits that pay for their tickets over there, then when radicalised and with clear instructions on how to harm us we then pay their air fare back here !!!!!   How does that work.  I do fear reprisals now in all major cities.  It is what we were promised if we dared to attack and I fear so many more innocents will suffer.

What can we do, sit back and do nothing until they change all our religions to their own, well no, that won't work.  Even if we did change they would still not be happy, fighting is what they like.  I can't believe in any religion that tells man to kill its fellow man. I throw my hands up in bewilderment of it all and I am pleased in this instance that it was not down to me to say yeah or nay.  Quite where it will end I don't know.  Look how long the problems went on for in Ireland!  Will this be the same?

Will it help to bomb them, or will it make them more angry than ever. The atrocities they carry out is beyond belief, and all in the name of religion!  I think not.   If we don't do something where will it end, not until we are all of "their making".  How long could we sit on the fence and do nothing because of these very real fears of reprisals, not much longer.  Still I am pleased I did not have to make such a difficult decision.  It isn't that I care about the other countries  killing the terrorists, of course I don't, they certainly don't care about all the innocents they kill.    I just worry about their anger that we DARE to fight them back and the horrors they will leave us all with in return.

I do fear for our children and grandchildren and wonder what kind of a world they will live and grow old in.  How I wish we could all live in a world of tolerance and love, where we all got on and cared for each other.  This won't be happening any time soon!  It will be very interesting to see where we go from here.

Master chef

Just watching this programme and it astounds me how people that call themselves chefs can't even make a simple hollendaise sauce!  I was cringing as I saw it made with tomato sauce and tons of oil, no egg yolks to be seen, the resulting mess wasn't even tasted by the judges.  We were taught how to make this simple sauce whilst at school and these were supposedly professional chefs.  Pleased I don't eat in their reateraunts. I shall find it very interesting now to see their own creations.  It always surprises me how they do so poorly in the skills test and then go on to do amazing things.   My money is on Mark right now.

Why won't he listen

Roy my neighbour wanted a bath.  I asked him if he wanted me to stay with him till he got in, I have seen him naked before since he had so many problems with his diarrehea but he insisted that he could manage.  Two minutes after I got home I got his call to say he had fallen would I go to help him, he was shaken and a bit bloody but still insisted on his bath.  Colin helped him in and his grandson helped him out,  I was cross with him as a broken hip at his age could well kill him as it did my lovely mother in law.  I know it is hard for him to ask for help but I volunteered it.  He was shaken up  afterwards though so I did his shopping and insisted he rested.  I was just thankful that he had the sense to have taken his mobile into the bathroom and placed it within easy reach, it could have been a whole different picture, a terrible one.  I hope he sticks to his showers for now unless somebody is with him.

Izzy and her Christmas Fayre

We attended this with Izzy yesterday as she was sleeping at ours last night.  She did really well on the tombola winning two nice prizes.  She also received from Santa a felt bunny to be sewn and stuffed.  Now I knew her mommy wouldn't have had the time what with her work, housework, playtime homework and cleaning the house etc so grandad decided he would sew it for her and she was to stuff it.  How I smiled to see my Colin patiently sewing the rabbit and stitching the eyes etc on it.  When I had a bit of a giggle he just gave a wry smile and said well somebody needed to do it!

She then went on to draw pictures of her favourite people.  Of course mommy came first, then grandad and me, where was I, ...... well nowhere!  I so know my place.  I know she loves me very much but I am not the one that takes her swimming, plays rough games with her etc.  Even when we bake she quickly loses interest as granddad and play win out every time.  I really don't mind though.

Whilst I was at the dentist last week I bought Izzy a two minute timer for brushing her teeth.  I assumed she understood the concept but oh how wrong could I be.  When I was in the bathroom with her, both of us brushing Izzy said "quick grandma we did it."  When I asked what she meant the answer I got astounded me.  She said the idea of the timer was that we BEAT it to brush our teeth before the sand completed its journey! Needless to say I explained the real idea of the timer.

Oscar P .......

At last some sort of justice has been dished out in this case.  I was shocked at the original case as I saw what he had said in his statements and then changed them so readily in court.  How on earth the original judge believed all the lies he threw at them is beyond me.  This judge has some common sense and said Oscar would have made sure she was safe first, or they could both have gone out of the door just feet from their bed if he truly believed there was an intruder in his bathroom.  All her clothes except a pair of jeans were being removed from the apartment, all packed in a suitcase.  I totally agree with the prosecutors comments who said they were having a row, she ran and he shot her whilst she was so totally defenceless.  The only good thing that can come out of this is that for the next few years another innocent girl cannot be fooled into thinking this is a nice guy and maybe suffer the same fate, or at least some of the bullying he was known for.  What an arrogant man he turned out to be.  Winning gold medals for your country does not give you the right to think you are above the law, thank goodness common sense prevailed.  Not sure how long until he can stop enjoying all the comforts of his home whilst under house arrest, it can't come soon enough for me.

Roll on Trial follow up

This will be on Wednesday.  My breathing is not the best, struggling at times and my stupid ph cough is back with a vengeance.  These coughs are so irritating as there is nothing to come up, no chest infection, just a cough every couple of minutes.  This cough used to drive Colin mad before I was diagnosed, even having him shouting at me once to "stop that coughing", I couldn't of course no matter how hard I tried.  I won't give up on the trial though, at least not unless my ph specialist advises me to, certainly not for the first six months.  Then after this time I will have the rhc and mri etc.  If there is a worsening then I shall of course come off and try another drug.  One good thing has come of it though, I don't talk much, always a plus for Colin!

I shall also talk to my Professor about asking him to please tell my doctor I need referring to a pulmonary exercise class.  Karen Farminer goes and enjoys hers.  My doctor has said time and time again he is too scared to refer me but with David Kielys' approval how can he say no.

End of another blog, thank you for reading and I hope you all have a lovely week.

Take care, much love to you all  Carole xxxxxx

Wednesday, 2 December 2015

Marmite Man

Davis Cup Final

Did you watch these three matches to try to get us back the Davis Cup, I believe it is almost 80 years since we last won this.  I watched it, albeit a little late as we had been out for lunch.  I was so careful NOT to look at any coverage or news before I got to watch it on my planner.

I had however seen the other two matches where he won, yes I know he also played with his brother and the whole team played amazingly well and must be so pleased of their achievement to bring this cup back to Great Britain.  Team effort was all that it was about but for me it was to watch Andy.

Andy is a marmite man. I think you either love or hate him, I love him (though I hate marmite)   I never had any interest in tennis until he came on the scene as a raw young man, disliked by many as he always seemed to go to pieces when the other guy was winning and he just appeared to fold.  I immediately took to him as I do tend to go for the ones that get slated for things they do.  I know he wasn't the best person to talk to after matches, appearing often to be surly though I prefer to think he was just shy.

I watched this young guy rise up through the ranks to become seeded 2 in the world.  I believe he did gain a lot in popularity a few years ago when he narrowly missed out on winning Wimbledon to Federer in 2012. We saw him burst into tears when he was asked to give his little speech and he told us that he would try but it would be so hard.  I cried for him.  Now though he has gone on to do such great things for us.  People say he isn't playing for us as he is NOT English but he did most of his training in England as there were not enough decent players to match him in Scotland so daily his mom Judy drove him into England where he met with good players so he could improve his game.  I love his scottish burr when he talks and I have loved watching his game improve to where he is now.  He is now married to a lovely lady and about to become a father for the first time.  Everything in the garden is rosy for this young man and I hope he becomes number 1 seed before too long.  Well done Andy for helping to bring back the cup for Great Britain.

These boots were NOT made for walking, well not without socks anyway.

My day for my full blood count at my local hospital to check my liver function and also for warfarin.   As it is only around the corner from me and the parking is so difficult I decided to walk, to take it slow and steady and see how I went on.  Eager to get a move on as I was hoping to do this in between drying two washer loads of bedding I put my previous thoughts aside about nice and steady and hurried out of the house.  I went without socks on my feet and wore only my boots.  Big mistake.  The boots, though comfy are not made to be worn without socks.  I hadn't gone many steps when I felt the tell tale rubbing of the boots against my heels.  It was quite a painful journey then to the hospital where bloods were carried out quickly and efficiently by my team.  Onwards then home and the relief on entering the hall to take my boots off.  Oh my, what an absolute mess.  Now I expected my heels to be rubbed raw, stupid me but not what I did encounter when the said boots were off.  The blood was all over the insides of the boots.  It seems that as my blood must be thin, likely over the accepted 2.5 as I walked my clotting didn't stand a chance and the result was an absolute mess.  Once inside it took some time to clot and now I am sporting two huge plasters on my heels.  I shan't  be doing that again in a hurry.  I now have the joy of cleaning the blood from the inside of my boots.  Not a pretty task.

Skeletal remains

Not half as shocking as it sounds.  My last blog showed a picture of Izzy stood next to a skeleton who was slouched in his chair reading his newspaper.  Izzy is fascinated by bones and the human body so I down loaded her an ap so she can see inside our bodies from all he organs, muscle etc and of course the bones.  Now she tells me our next set of stories I make up must be about her and skeletons. Must get my thinking cap on as we will be having her stay over again very soon and for her the highlight of going to bed is a cuddle with grandma and a new story.  They must always include grandad who rescues her and not be scary, well maybe just a little!  Something for me to ponder over whilst at my pottery class this afternoon.

On my own again

Gordie has gone, on his way to his appointments and Colin has taken our motor home in for some remedial work before it runs out of its warranty.  Only a bit needs to be done but the journey there and back will take most of the morning.  He will also call in on the way back to House of Fraser where I have asked him to return one pair of jeans bought over the weekend.  So here I am, alone again and I must say the house seems really quiet after having Gordie stay over.  He is such a a great guy and I have loved to hear both Colin and Gordie reliving moments from the past, most of them funny.  Though our place is too small to have people stay over for long ( one of the reasons I now want a bigger house) I really love it when people stay a few days.  We always seem to do fun things so as to entertain them and we always have a good time.  Already I am looking forward to his return, hopefully with his lovely wife Pat.  Go well Gordie.

Can you remember when?

We have been invited to the wedding of a friends daughter and on reading the wedding present list it took me back to my first marriage as a very young teenager.  I was born a few years after the war and money was tight for most people at this time.  By the time I grew up and got married we were still living in the era of make do and mend.  We were very fortunate that my mom and dad bought us a new three piece suite, an extremely lovely present in those days.  However the rest of our home was made up of families cast offs.  We had a bed given by another family member and very lumpy it was too as I recall.  Our sideboard was given to us from my godparents who were replacing theirs.  Actually it was an amazing piece of kit, having lights that lit up when opening the drinks cabinet, not that we could afford drinks to go in it!  Table and chairs were given by another family member.  I remember well our cutlery set which was donated to us by some kind person, I believe it was an aunt  One of the tines on the fork was bent and we couldn't straighten it no matter how hard we tried so we always tried to make sure we we didn't get this fork as it stabbed us in our cheek whenever we took a fork full.  We didn't have a washer, all clothes were washed by hand and dried around the fire if the weather was too bad to be hung out.  Would I want the young ones to go back to this era, no of course not BUT ....... how we appreciated things then as we saved up and did without to buy each new piece of furniture or crockery, it really meant something then.  We saved every spare penny to get a deposit on a house, it took time but oh the joy of getting the keys to a house that would, in time, really be our own. I have many memories of those bygone days, some good, some bad.  Of course there are things I would change were I able but some things I would not.  I hope the young ones of today can one day look back on great memories.  I know the young can have it rough now too but at least their first house, rented or bought will have a bathroom.  I had no bathroom but an outside toilet.  When I tell my children of how we struggled then they can't really understand it but the post war  babies did have it a bit rough!

Crikey I forgot!

We just received a card today and as I was opening it I said oh no it is way too early for Christmas cards.  Imagine my surprise then when I opened it to see it said Happy Anniversary.  I had totally forgotten it is seventeen years since I married Colin on the 4th December.  How time flies.  We won't be doing much to celebrate as we have Izzy overnight that day but we don't do much in the evenings anyway since ph reared its oh so ugly head.  When we married many said it wouldn't last six months as we married four months after we met.  Hope those that see how wrong they were can also see how we are very happy together.  We have had ups and downs along the way but we are stronger than ever  and we intend to make a good few more of these anniversaries yet.  Thanks for the reminder Jan, though I doubt Colin has forgotten but my brain with lack of oxygen lets me down on many occasions such as these.

HELP ....... I need somebody.

Oh my word.  Pottery from hell.  I had begun to go "off" before I went to class.  You know how we get the overwhelming feeling of battery failure.  I decided that I would fight this, how many times have we heard people to tell us to work through it and we KNOW we can't.  So why then did I think I knew differently and that I could.  I was so wrong.

It began almost as soon as I arrived as I couldn't find my clay.  Now I knew even when I did find it amongst all the other bags I wouldn't lift it but at least it would be a start.  I rummaged and struggled, all the time with my head bent, we know that is a definite no no.  Kim came to my rescue, a really lovely bubbly girl who is always so full of life and always has much to say so I really enjoy listening to her stories.  She came over and looked for it too but it turned out to be in another cupboard.  Now it doesn't seem much to a layman but I could feel the effects of having my head down and so sat down as soon as I could.  Helen came over and gave me a new assignment to do, all about different layerings and depths etc.  I set to it but I honestly didn't feel like it at all, unlike me who so looks forward to this class.  Towards the end of the lesson I was just throwing things on and pressing all sorts of shapes just to finish the thing.  I can't even tell you how it looked in the end as I didn't bother to stand up to see the whole effect.

I washed up my brush I had used for the slip and put away my board and sat down again.  I was so sure I was going to either faint or throw up.  My legs were wobbly and I felt so bad.  Hellen looked at me and asked if I was alright.  I said I would be fine, it was just ph rearing its oh so ugly head again.   Unbeknown to me Linda, my lovely friend who lives in the same building as me saw what was happening.  She herself has a bad heart as she has cardiomyopathy so knew immediately action needed to be taken.  Kim said I had gone chalk white and Pauline asked if I was cold, I said no, on the contrary red hot.  Anyway Linda came with my coat and helped me on with it and I gave her my car keys.  No way could I have driven home, not for my own safety or that of other road users would I have been so irresponsible.  Linda had abandoned her pottery to do this for me, how fortunate am I to have such a friend.  Off she went to bring my car down.  I had not given a thought to explain to her how to start the engine.  My car is the new mini cooper and it does not have a start button on it.  It has a sort of lever thing you push down on the dash when your foot is on the clutch.  Anyway I began to walk the long mile to the door, of course it is not really a mile but oh, how it seemed it.  The rooms are very big, being an old mill and I swayed from one obstacle to another holding on where I could.  Kim came up behind and helped to hold me up.  I told her I would be ok but she was so lovely, being adamant that there was no way she was going to sit back whilst I got to the door.  I barely know her so I was so touched.  If I were younger I would certainly love to be in her circles as she is such fun and has a mind of her own and uses it!  I like this.

Result was Linda took me straight into our place where Colin undressed me and got me to bed.  Moving was so difficult, just to sit up for a drink took so much effort.  My limbs were so heavy, I could barely even turn over in bed.   What a terrible night, it went on and on and on.  I fell asleep eventually and woke to another day.  I am at least up, though not dressed yet, must do though as dentist as noon.  My legs are shaky but I don't think I should call the trial team.  Is it the drug or my ph itself, who knows but I am at Hallamshire for my trial follow up on Wednesday.  If I go off like that again before then I have a 24 hour emergency number and I may well ring it.  In the meantime Colin is coming with me to the dentist as there are a few stairs to climb to the door.  How I hate all this, being dependant on others was alien to me before I got ph.


Well I must say my dentist is ace.  Always mindful of my ph condition he is very careful not to stress me with all he does, very patient too.  I needed three injections in total and he was so good I barely felt a thing.  Every step of the way through the fillings he kept stopping and asking if I was ok, I was fine.  When he had finished I thanked him for his kindness and patience.  I have the BEST dentist I could ever have. 

So there you have it, yet another blog.  Hope I am not boring you with them. Go well all of you and thank you so much for taking the time to read them, it means a lot, also the comments.

Carole xxxxx

Sunday, 29 November 2015

Sleepless in Halifax

It is almost five o clock in the morning, Colin is snoring away at the side of me, though he will tell me in the morning he hasn't slept, so what better time to begin a new blog.

Late afternoon and early evening I was waiting for the headache from hell to really send me reeling and it didn't!  I can still feel the low grade headache I have all the time since ten days into the trial medicine.  I can live with this, I hope this means my body is accepting the new trial medicine.  Maybe it might work so I can have more energy after lunch and so enjoy my days better,  We shall see but I certainly hope I don't get slammed again with the headache from hell. 

A good friend of ours is staying over with us on Saturday and Sunday, he lives in Canada.  Indeed, it  was Gordon and his wife we were with in the Grand Cayman where we had our honeymoon.  It is always a pleasure to spend time with him.  Unfortunately we don't see much of his wife Pat as she has lots going on in Canada.  We like to make him feel welcome and we are always looking for things to do with him that we know he will enjoy.  

Gordon loves our old buildings as I have said before so we have mapped out quite a nice afternoon and evening with him.  Our Art Center is having a Christmas Market so we shall take him, and Izzy as we shall be having her here for the day too.  I shall enjoy looking at all the lovely crafts for sale whilst Gord will be busy looking over this amazing mill, and Izzy can draw or mould things there so she will enjoy this. Such great use has, and is, being made of this brilliant building.  I know he will just love it.  

On entering the place your nostrils are assailed with all the smells of bygone times when the mill was used to weave cotton.  The smells are of the oils used to keep the machines working well and seamlessly work their magic with the cotton.  The roofs are so incredibly high and I close my eyes I can imagine the clatter of the machines and the banging of the clogs on the floor as the women did their work, and the shouting that would have been going on so they could be heard above the clatter of the looms.   I love the steps, they are many, very many, but the treads are so narrow, a testament to the times long gone when we were all so much smaller than today and so were our feet,  You can see the wear on them from many feet over the years and as I walk up and down them I wonder who the people were from the past who did this self same thing and which job they had in this huge place,  The doors are huge and so heavy, made in the most part of iron. I wonder as I go towards them who pulled open these doors, what were they carrying?  Maybe they were stopping for lunch and had their tuck with them.  Always fascinating for me who always wants to go back in time for a day and live their lives.  I do hope the day goes as well as planned, I shall tell you in a later blog after he arrives and our time together has been spent. 

Later when Izzy has gone home we shall have our meal. We are not sure if we will have it in the cabin with a fire lit inside the pot bellied stove or indoors here, it is very much dependent on how I am feeling.  Michael our good friend will be with us too no matter what.  We have planned our menu carefully to be tasty but easy to do. Colin is in charge of the starter, a really lovely salad with crunchy lettuce, pecans, cranberries, Stilton cheese and crunchy apples topped off with pea shoots and dressed with a French dressing, it is a simple but tasty starter.  The main is simple too being a chicken cacciatore served with rice.  This will sit in the slow cooker until ready to be eaten.  I like simple things.  The dessert will be one of Colin's favourites being a million cheesecake.  Easy to make though there are a few different stages.  I personally am not keen as I am not a chocolate fan but I know it will go down well with the three men at the table.  I would prefer a nice Tart Citron as I just love the sharp tangy lemon taste. 

Speaking about lemons, and I do have plenty lemon recipes after living in Spain and growing them, I saw a nice recipe by Mary Berry I should like to try out.  It is a sort of lemon meringue pie.  Now I have made gallons of lemon curd and lemon fillings in my time but hers was different to any I have ever made so I shall try it.  I also liked that her base was one made of crushed biscuits as opposed to the normal shortcrust base on a lemon meringue pie so yes, one for a try out. 

The joy of the phone

I was delighted today to have a proper catch up with my good friend Sue Reid.  Sue and I met on Facebook but soon became good friends and we went to visit her in London.  She is a fascinating lady as she writes books, mainly for schools to teach children history,  I have bought a few myself and if you are fortunate enough to come across one of them then don't pass it over, they are great reads even for us older generation.  Today we spoke on the phone for an hour,  I truly don't know where the time went but oh how lovely to hear her voice,  Next year she will come and stay with us for a while so I shall look forward to this very much indeed.

Brrrrr, too cold to go without heat and  hot water. 

A friend who lives opposite me has had no heating and no hot water for a week!  Her place is a cold place too in winter so I do worry about her.  She is waiting for a new boiler which will be some time coming yet. She came over to us for a shower today, first one in a week, though she does keep herself clean, How she enjoyed the warmth of the shower and the comfortable warmth of our place.  After her shower I settled her in a cosy spot with a glass of white wine,  I could see her visibly relax as the welcoming shower and the warmth and wine were relaxing her so much she felt sleepy.  That is until a tornado hit,  The tornado was in the shape of Izzy arriving home from school,  There were high pitched squeals of laughter as she and grandad made paper planes and saw which one flew furthest.  Then followed lots of drawing.  Izzy drew herself and a dog whilst grandad drew elves, pretty decent ones too.  Then came a game I didn't follow but it did include plenty of hats!  The laughter got louder and louder and pretty frenzied too as they dashed around from room to room.  The sleepiness quickly wore off my friend. She was telling me she was using plenty of wet wipes, the pampers variety to keep herself clean whilst waiting for her new boiler.  I was surprised to learn from her that these  wipes are amazing in that they remove stains from clothes.  Hannah personally had spilt chocolate down her top, hard to get off whilst wearing it but she just wiped it with a baby wipe and hey presto, gone with no mark to be seen.  I shall certainly be trying this one out. 

Thursday's walking group.

We did one of our favourite walks today being a nature reserve called Cromwell Bottom.  There is always something different to see.  The colours of the flora and fauna are changing often too and we see the rise and the fall of the river.  Today there were lots of the volunteer working party heading out to do their things and Colin has decided he will join after Christmas.  Afterwards whilst most were enjoying a nice cuppa we were asked if we could think of anything to improve the reserve as they were always looking to do this. One suggestion was more seating going around as for the disabled such as us we do need plenty of sitting places and I suggested the poo sticks seen in some nature reserves. These sticks hang over the boughs of certain trees and can be picked up whilst walking around with dogs.  The sticks are then used to flick the poo into the undergrowth in the hope of stopping all the bags of poo people decide to hang on trees.  Why do they do this.  Why do some people believe they should not have to clean up their own mess.  I wish I knew the address of some of these people.  I would ask all my friends to go and poo in their garden, pick it up and bag it  and hang it firmly on the boughs of their trees for them to have the pleasure of collecting, or indeed the pleasure of just watching all the bags swing merrily amongst the trees. Or maybe we could do as some do who don't even clean up the dog poo but just leave it for us all to walk through and take it around with us on our shoes until we get home and have the facilities to clean their dogs poo from them.  If my friends all did this in their gardens and on their paths it just might give them some idea of how irresponsible they are with their pets and their pooing. The Nature Reserve people are going to look into these sticks  as the bags are so unsightly.  This won't stop the ones who can't be bothered to do anything at all but may help with the bags being strung from trees with dog poo in various states of decay because the owners can't be bothered to carry their bags to the bins provided, 

Izzy and her "operation" 

Izzy rang us this evening to ask us when we are taking her for her operation as she knows we are taking her as her mommy is so busy in the run up to Christmas.  What is this operation being carried out on our darling girl?  Well it's a flu jab!!!  I have said before she is a wimp and cried when her mommy asked us if we would take her as she said she is scared.  I truly hope she does not grow up with the fear of needles.  How pleased I am that I don't or with all the needles we have as ph patients I would be on my knees.  So she is NOT having an operation, just a tiny jab next Wednesday.  I do know I am fortunate as I know some people have a very real phobia about needles and I truly do feel for them.  

I well remember Hazel Roberts a ph friend of mine who sadly died after her lung transplant.  She dreaded her visits to the hospital for the very necessary blood tests.  She said she would sometimes feel physically sick at the thought of going.  I hope Izzy does not grow up with that very real fear as there are many times in our lives where there is an absolute necessity to have these blood tests.

She also asked us if we would be able to go and see her collect her prize for good reading. 
Sadly on this occasion we had to say no as we had a prior engagement.  It is a pity but there are so many of these awards given out so we can't possible make every one of them.  She accepted this ok though and I have promised,to look out for an airplane she wants.  Not a pricy one, just one of those that you buy for around 50 pence made of some kind of polystyrene,  Both her and grandad are into throwing planes around these (sadly despite searching and searching today I can't find these planes anywhere, maybe they have stopped making them). She will have to continue with the paper plane variety and be content. 

Black Friday

Not sure if any of you made it out for Black Friday.  Maybe you shopped online to avoid the queues.  Colin reluctantly agreed to go with me and we decided we needed to leave early to avoid getting caught in the traffic into Leeds. We planned on leaving here around 6.45 a.m.  Colin had been really tired the last couple of days and yet  had trouble sleeping so he took a sleeping tablet.  I was up at 5.30 which was no hardship as I am generally up at 6.00 to take my medicines.  He slept right through my showering and blow drying my hair and getting dressed. I did then try to wake him but to no avail so decided to go it alone.  I texted my son who lives in Leeds centre to tell him I would be in his neck of the woods if he wanted to meet me.  I did then write a note to Colin and left it on the bed. 

The journey in was seamless and I arrived at 7.00 which was perfect timing.  I bought myself a couple of bits and then went for a drink and a sandwich and my son arrived just as I was thinking of leaving. We had a lovely time just wandering and I bought him a pair of jeans in the sale with a 20 percent discount,  I managed to find a small toy for Izzy as she had got her reward at school for it turned out good maths!  At least it wasn't for good sitting!   Meanwhile Colin had rung me to see where I was.  I  told him I had left a note but it had got lost in the duvet.  He got up and looked all around the house for me and was worried as to where I could be at 8.00 which was when he had woken up.  Upshot was he decided to go on and see Izzy get her award and he said she was so thrilled to see him, really excited and pleased so in fact the day could not have gone any  better.  Pity my daughter couldn't have shopped with me as she has oodles of style whilst I have none but work dictated otherwise.  I have now arrived home with feet the sorest they have been in a long time but it has been a great day.  The great thing here was that rather than the frenzy of last years Black Friday most people had decided to shop online so the stores were really quite quiet, well certainly at the time we were there, though it did begin to fill up by lunchtime and Haydn's' search for the right jeans. Certainly by this time Harvey Nichols had its fair share of bargain hunters. 

I bought three jumpers and a couple of pairs of jeans and a leather jacket.  Haydn at last found the means he had been searching for for a long time so I can rest in peace. 

Still no headaches from the trial pill so that is a bonus as I only had them for around ten days in total, don't think they will come back now.  Pleased about this as shopping and headaches don't go together. 

Health Care @ Home

Well I DID get my delivery though not as I was told.  My expected delivery slot was to be Thursday evening so you can understand my surprise when we were enjoying lunch at 1.30 in a lovely olde worlde pub when we received the call to say they were outside waiting for me to open the gates so they could come in with my meds!   We told them my delivery slot was for the  evening but they said they had me down for three o clock!  So even then they were one and a half hours earlier than the time on their slot, though certainly not the evening delivery we have been promised. We were astounded and as there was no way we were leaving with a fabulous meal half eaten we asked them to go to another address and have it signed for.  Fortunately this was done and I received  my medicines.  It was so good then when I read replies to my last weeks blog with news of the cock up that I read what Nikki Bennet does about this and I think it is such a great plan and I  shall certainly see if I can do this.

Nikki Bennet had a great idea about deliveries for our drugs. She asked her chemist if they would accept her drugs and they agreed. The result is that she is not tied to the house and the chemist is happy to sign for them and she collects them at her leisure.  Brilliant idea Nikki, I bet others on here try that too, a great time saver.

We have had this before

Primary pulmonary hypertension is a condition where the blood pressures in your lungs is too high in the blood vessels that supply the blood to your heart.  We all have TWO kinds of blood pressure but this one cannot be measured by the blood pressure cuff.  Often my blood pressure reads normal even when I know my pressures in my lungs are way too high and rising.  This is why we MUST have a right heart catheter to really see the pressure in our lungs. So you can imagine how pleased I was on seeing a new doctor at my own surgery to discover that he had referred two patients to Sheffield from Leeds who HAD been diagnosed with ph.  No of course I am not pleased they have ph but he obviously knows his stuff and for sure he is the one I shall ask for on any future visits.   If you have symptoms of ph and doctors is saying you are fine, your blood pressure is great it's just asthma and the medicines do not help ask to see a ph specialist where this simple procedure can be carried out to confirm or deny pulmonary hypertension. It just could save a life of worsening ph. 

Pan pipes

The guys were in Leeds centre playing the pan pipes.  They were all dressed in the traditional gear and looked amazing,  The music always brings back memories to me of many holidays.  These pan pipes always seem to be playing in busy town centres throughout Europe, in particular Greece. York Center always seems to have them too as we go there often and see them.   Colin always sits and listens to them, he finds them extremely soothing.  When my daughter was around eighteen months old she used to dance in the square to this music, which inevitably brought more people in to watch as it was so cute to see a tiny baby swaying and moving around to the sound of the pipes.  They always collected more money too so she was a great crowd puller!  This time as they were playing one of the extremely long beautiful feathers came out of his headdress and floated towards me where I grabbed it.  It must be eighteen inches long and beautiful colours. I did  offer it back but he declined with a shake of his head so I have brought it home to give to Izzy.  Way too big for my memory box but we shall keep it somewhere as she will love to play tickle games with it,

A strange coincidence of music being played in the streets.  Many many years ago whilst I was out shopping I stood and watched and listened to the beautiful bag pipes being played by a piper in full regalia.  I knew my eldest brother Tony loved the kilts and  the sound of the bag pipes so much that two years earlier when we truly believed we would lose him to a terrible illness he told us he wanted bag pipes playing at his funeral.  How relieved were we then that he recovered his health and his weight going from 6 stones back to a healthy twelve stones.  In my head as I listened to the pipes being played I thought then of my brother and felt relief that we never went down this road, I checked my watch whilst standing listening and the time was just 10.30.  I continued with my day and arrived home in the afternoon and the phone rang,  I answered the phone to be told the devastating news that my brother had died that morning at 10.30 after a valiant effort by many doctors and nurses to save him.  He had died as I was stood listening to the sound of the bag pipes.  I have never forgotten and now whenever I see  or hear the pipes I feel sad and wish for my brother back.  Of course he had his wish from two years before and he got his humanist burial in his garden with the pipers playing him to his final resting place. How I wish he was still in our lives.  He was a kind gentle and generous man, doing much for the under privileged in our country and abroad. 

Great Weekend

The weekend went well, though was extremely tiring as we also has Izzy.  We took Izzy down to our art centre as planned and she had a thoroughly good time.  We bought her two pottery ginger bread men for tree decorations and then we saw a mouse so cute that we bought it for the memory box.  Izzy was making her card for mommy and also making an decorating her own Christmas wrapping paper for her mommy.  She had a whale of a time and  she all loved the studios which we took her around, check out the picture, she is standing next to a skeleton. 

Whilst she was doing this Gord rang to say his arrival was imminent so Colin went to collect him and brought him back to the mill.  He really enjoyed this.

Dinner was in the toasty warm cabin and all went well though I was so exhausted I did fall asleep on the sofa.  Now woken to a new day, church and now a chocolate cake is baking  in the oven.

Amazing lunch out and back home for a rest.  Picture of the mouse along with the things from Jessica's  baby shower for our memory box, always a memory somewhere.

All is right with the world, though the weather is terrible!

Love to you all. 

Carole  Xxx