Sunday, 17 February 2019

R.I.P. STACIE PRIDDEN - YOUR THOUSANDS OF FOLLOWERS WILL NEVER FORGET YOU

Stacie :-  Could fill pages talking about "our" Stacie and yes I can say "our" because she endeared herself to thousands of people with her journey. First through her blog "Life is worth the Phight" and it continued after her transplant. Stacie was a lively bubbly girl so full of life and she was determined to live every minute.


She was born with a heart problem that later developed into deadly Pulmonary Hypertension. The only cure was a transplant and she was determined not give up the fight. Throughout my time of knowing her, which was eight years she never failed to inspire me or bring a smile to my face. Everyone that knew her could not fail to love her. She had a passion for pyjamas and all things Disney and magical. Though much of her life she was poorly she did not let that stop her "LIVING" life to the full..  

We were all astounded to see just how well she did post transplant. She walked the stairs in record time and was jubilant on reaching the top without oxygen. All of us smiled and laughed with her.  Television interviews held no worries for Stacie and she sailed through them telling everyone the importance of organ donation and bringing awareness of our hidden disease Pulmonary Hypertension.  Everyone took her to their hearts and she was honoured to be given seats at a venue she had long wished to visit  - WIMBLEDON!  So one of her ambitions crossed off her list.

In time she met the love of her life Mark Watson. These two were meant to be together.  He totally understood her trials as he himself was a member of the donation society.  He had had a heart transplant many years previously. Stacie moved in with Mark and they bought their little fur baby as Stacie liked to say. - Marzuki.  Because of their determination  Stacie and Mark enjoyed holidays abroad.  Another ambition of Stacie was fulfilled. They raised money to buy a specially adapted wheelchair that could cope with the rugged hills and enjoy the wind on her face and see the wonderful countryside surrounding her. They were so successful in their fund raising that they actually raised enough to buy another two  that can be borrowed and used. by people in real need.  Mark is a gem of a man. Their love shone through in the good times and the bad.  

Together they searched and found the perfect house, Stacie was so excited to be moving in. Sadly it was not to be and she never got to live in it due to her illness but she had the hope, the thought of it and it kept her going. The moving in day was just before she lost her fight to live. Even through all of this, her body finally beginning to give in she still kept sending us messages of hope and encouragement.  

Stacie had the most loving family. Her parents were supportive in all she did and she had her sisters too to encourage her all the way Her nephews and niece also played a huge part in her life and we often were shown pictures of them all and told what they were up to. In the latter few weeks it was more gentle things such as colouring, Stacie loved her colouring books and would often colour with her nephews too.  

Stacie inspired many of us who suffer from the disease. She taught us to laugh through the hard times - that generally better ones would be coming. She showed us all how to live, laugh and love and not get bogged down with the negative, even with all the medicines we need to take just to keep us alive.  She helped to give us strength and purpose with our new bodies that do not work as well as they did now we have ph. She was huge in bringing awareness of ph and just what we suffer from with this illness that does not show itself on our outer bodies, it is wrapped under our skin.  

So Stacie who fought so hard has left us now and it will be a sorrier place here on facebook. Her zest for life shone and she showed so much joy and warmth in all that she did. Stacie had a fear of dying alone but that was never going to happen with her amazing family and her love Mark. She was wrapped firmly in their loving arms as she took her final breath and left us all.  

Stacie thank you for the friendship, for the words of wisdom on my journey at the beginning when I was lost.  For the laughter and the memories. You will live in my heart forever and I am sure in the hearts of the thousands of followers you have.

My thoughts go out to those closest to Stacie, to Mark, her amazing human as Stacie would say it. To her mom and dad who did a wonderful job of raising such an inspirational young lady and to her sisters and nephews and niece. You have so many wonderful memories of Stacie you will never walk alone. Warm love to all  Fly high our darling ph sister and thank you for the memories. xxxxx

And onto inconsequential things after losing such a person

I have said of my desire to donate my body to medical science after my death. My hope was that they can learn something as how often do the medics get to really see inside the body of a ph person.  We know all our internal organs suffer a great deal due to lack of oxygen and also the very toxic meds we take. Also as I had denervation, one of the very few worldwide I hoped this would teach them something.  I have not had a chance to talk to my specialist yet as I see him next week but Gail, a ph sister asked the same question years ago to her medics.  

She was told that they cannot say where the body goes after donation which I think is sad as our illness is so rare a teaching hospital would be the ideal place in my view. Also the distressing fact that up to two years later your family are then told the remains are yours to hold a funeral or do what you wish is a bit of a bummer.  The pain of the death of a loved one would hit hard again after getting a chance to get over it in two years.  However not spoken to my guy yet so will see his reaction.  This does not mean I would NOT donate - any body is great for anyone to learn - happy to be used as a learning tool but if it is that it cannot go to a hospital dealing with ph then it is still a bit of a downer.  Will update in a few days time.  

Footsteps in the snow

A couple of weeks ago we woke to snow, as indeed did most of the country. Imagine our horror then on opening our curtains a couple of days later to see footsteps in the snow going down into our garden. The footsteps were very clear.  Somebody had walked down our steps and into the garden and back again. We had not had a ring on the doorbell and our security camera had not picked up anything in the night. We did note that we had one blacked out vision on the motion detector so were very concerned. How had somebody managed to get to our cameras without being seen, let alone cover them up. We have covert cameras so we were quite worried.  

We looked back on all the motions that had been going on in the night and other than this black one all was well. Were we being checked out for robbery or worse. It wasn't until we came to the afternoon ones that we saw what had happened. Our builder had come back to do a small job and needed to go down the steps. Clearly he did not bother to ring bell which would have alerted us and just walked blithely down, carried out his task and walked back up again. He will never know the consternation we had but we were so relieved to see what really happened.  

Bedroom drama!

For some time now Colin had woken up to find blood on his side of the sheets.  He had a scratch down his leg and we had not got a clue where it was from but assumed that was all it was.  Imagine our horror this morning when he pushed his hand down the sheet to discover something hard and sharp sticking out of the mattress.  Now we change our bed every week, in fact last week due to my leg injury we changed it quite a few times without seeing anything amiss.  As you can see from the picture this piece of metal was sticking up and out of the bedding.  So here was the culprit.  My horror was more for Izzy as she often sleeps in with me kicking her granddad out of the bed. She plays games in bed such as hide and seek. Imagine if that had gone into her eye.  I rang Barker and Stonehouse who said it was clearly an issue ( well of course it is! ) and she would give me the number to ring to complain.  I did just that but was told that nothing could be done until next week sometime when hopefully they would send somebody out to inspect the mattress. In the meantime could we tape it up or something!  fortunately we have another bed but woe betide those that do not.  Who wants to sleep on a mattress such as this.  

Never in all my years of buying mattresses have I seen this.  Many years ago as a single mom our mattresses were not of the quality of this one and I never saw such an issue. My hope is that this is not a manufacturing error that is in lots of their mattresses and somebody does not end up with more than a scratched and bloody leg.  

My leg

After all the issues with my leg you can see how it is doing. Never again will I blithely close the car door without checking my poor leg is out of the way Fortunately I was wearing trousers which stopped all the dirt from the bottom of the car door from entering the wound.  Colin was a great nurse, always ensuring his hands were washed and hand gel applied before touching it. The steri  wipes I had left over from when I had my hickman line were very valuable to keep the wound clean and he was always changing the dressings as it kept bleeding. Anyway it is on the mend now and thank you for all your well wishes.  My biggest concern as I said was sepsis due to our low immune system but I was very fortunately spared that. 

Izzy

As she has progressed so well with swimming she now needs to use the longer lanes one the other side of the pool.  I believe this is so that she can really practice her strokes, which are very good now and move forward with speed etc. Sadly the day will be changing and we are just not just sure if we can fit her schedule in around other things. One option is for a Saturday morning but that is family time and we do not feel we can commit weekly to that. Another day is Thursday evening but as she has an outside school activity already on this day again we are not sure of this. Colin really wanted her to be taught to swim so that we felt safe for her and that she can do that really well.  However it does seem a shame that at this stage, when she clearly shows a lot of promise that she now leaves her lesson behind.

Izzy herself is sad if they do no continue as she loves her time in the pool beforehand with grandad and as she said herself " I am better than all in the class now just when I have to leave". It is a true statement and she clearly is better than the rest. So we are in limbo trying to hopefully see her swimming teacher this week and see if a solution can be sorted out for her.   We shall see.

Holiday

Yes we certainly need one and are planning to go away at some stage soon. It depends when Lucy can move in here with her husband and this time two friends who want to visit with them.  All will be sorted soon so we can pack up our motor home and away we go. Friends are hopefully joining us for three days of this holiday as they want a mini break. We are going to go to my beloved Whitby amongst other places and it will be sad not to be able to visit with my godmother who recently died.  

The walking is lovely to Sandsend Bay and there is a great pub that serves superb food at the end of the walk which makes us more determined than ever to complete it. After our friends leave we will move around to various places along that coastline, maybe  visiting haunts we have not seen for many years, reliving my childhood as it is here and the Lake District where all our holidays were spent, memories, ahhh.  So Whitby, Bridlington, Filey and York here we come.

Kathryn Jenkins

Now this singer has my husband enthralled, he just loves her singing and goes into raptures when he hears her. She is currently touring and we have been fortunate to get seats to watch her in May. I am looking forward to having a night away, a really lovely dinner and sitting and listening to wonderful music and afterwards going back to a nice cosy hotel for the night.  Do any of you like her voice?

I am determined that this year now the house is completed we shall get on and do enjoyable things.  After saying that the garden is underway with Colin spending lots of time and energy digging. I want him to build me a raised bed so I can grow our own veg and also we will have some fruit trees and bushes.  I intend to begin tomorrow planting seed potatoes in buckets as my dad did. I love how easy it is and how great it felt to be able to ferret about and get enough potatoes for tea and leave the rest to continue growing. I hope I have the success my dad did.  

So I come to the end of this very sad blog. With warmest love .

Carole xxx





Wednesday, 30 January 2019

AT LAST - EVERYTHING HAPPENING AT ONCE

All things come to those who wait

I received a call yesterday evening from a hospital a few miles from  me, not my local one and not my specialist one either.  I am to ring up to make an appointment to go to the ambulatory ward for my ferritin infusion!  Not before time and a lot of wondering why it was taking so long and what were the issues around it.  Anyway the specialist I saw two or three weeks ago did what he said, got the results of my bloods - again - and talked to his colleagues and I assume the rang my PH guys and the outcome  is an appointment for the said procedure.  I know my headaches will lessen over a two to three week period when I have had it and hopefully will feel less tired plus my legs will benefit and should not be so jumpy.   So on Sunday at 9.30 I will have my long awaited infusion.  Due to being classed as an asthmatic mine will only take around 20 minutes so 45 mins in total from arriving to leaving.  Good job!  

My pain clinic manager rang me to arrange an appointment for that so we fixed it for the end of February.  With these two appointments out of the way I will be on track for any further developments regarding my health that is due anytime soon.   Once again how blessed we are that we have the NHS that see to our needs.  Yes we may have to wait but in the end generally things get done and we can get on with our lives.

Happiness tinged with sorrow

The snow is due to fall later this week.   We woke to a beautiful sunny but cold day today so we decided to walk on the canal.  The weather was so lovely, crisp and fresh and though I was sensible and wore a mask I could still feel the cold on my face.  The mud crunched beneath our feet as it was icy and the canal itself had lots of ice pockets.  Not many people were braving this cold so we mostly had it all to ourselves.  We promised that once we reached Hebden Bridge we would indulge in a drink and a big home made scone at our favourite cafe.  

Just as I was tiring we hit the bridge and with relief walked over it into the gorgeous town of Hebden,    It always sickens me when we reach here to see the leaflets up in the widows asking if anyone knows anything leading to the capture of the person who murdered 13 year old Lindsey Rimmer and then  dumped her lifeless body weighted down with a concrete boulder in the canal to be found a few months later.  She had been strangled and there were signs of a sexual assault on this very young girl.  Though this all happened in 1994 nobody has come forward with any real ideas who committed this crime. As ever when I walk past the shop she entered at 10.00 pm to buy cornflakes it makes me very sad.  Police think her murder is linked to a serial killer but as yet no real answers for her family.  So though I do love the very quirky town it always leaves a bad taste in my mouth. 

By the time we had our drink  (and yes a scone each with jam and clotted cream) it was time to return home and so we caught a bus back to the top of our road. We see no point in trying to do too much as I do not want to risk a ph day in bed - how I hate those wasted days - though appreciate they are a necessary part of our illness from time to time  to get us back onto an even keel. They force us to take the necessary rest we need. I was pleased to see how many steps I had achieved and know the huge benefit I gain from this. 

Alexa helping me to sleep

Like lots of us with ph sleep often eludes me much to my distress as the nights are soooo long.  However I decided to ask Alexa for help and I had her playing the sound of a storm.  I love storms, the most spectacular ones I ever saw were the ones in Spain from time to time.  I find it rather soothing listening to the rain pelting down and the thunder crashing whilst seeing streaks of lightening zig zag across the sky.  It was relaxing -  that much is true - but to be honest no sleep came my way as I was waiting and counting the seconds between each peal of thunder.  So sorry Alexa it was a no to the app for me.  I have tried a warm bath,  hot milky drink, soothing music and a good book.  None of them work for me so back to the drawing board.  

A good way to raise money

Always looking for new ways to raise money for ph I came across a great one the other day.  The church that is part of Izzys's school is trying to raise money for a new garden in the grave yard  and the grave stones have to be moved round to the side of the church.  Not the bodies which I find so sad but they are old so all is within the law.  Anyway each child is given a full tube of smarties and asked that in return once sweeties are eaten they do jobs for 20p pieces.  The new tubes are shaped rather like a 20 p and fit easily into the tube. Each time they complete a job they get paid in 20p pieces.  You will be amazed at just how much a smartie  tube holds.  I wont give the game away, just try it and see. Once each tube is filled it is handed back to the church and the children can, if they wish take another full tube to try to fill again once emptied of sweets. The children are so intent on filling their tubes they are willing to do any job without any argument.  I loved this idea and happily pinched it from the church!

Me and my girl

Izzy had friends to stay over the weekend so I baked them some shortbread men and took around lots of different coloured edible gels so they could all decorate them.  I also provided them with smarties and a few jelly beans to be cut and used as noses.  We left them all to it and I hope they did not make too much mess!  This turned out to be a huge success and one they have already asked if they can do again!  It was no effort on my part and to see the joy of Izzy and Harry when I took over  everything needed for when their friends arrived was lovely.

I am gutted a little at Izzy right now to be honest.  Well more to the point gutted FOR her.  For a whole year she had waited until there was a place for her on a gymnastics course.  Now I have said before she is not a natural sportsperson but has tried to do somersaults for as long as I can remember, to no avail.  Anyway her turn came and along with her parents off they went for her taster session.  After 15 minutes she refused to do any more, despite cajoling from Danielle so the outcome is she will not be having lessons.

When I saw her I asked why as I knew she really wanted to do them.  Her answer was that she did not know anyone there and none of the teachers either and felt silly that she could not do what was expected of her.  I told her that was the whole point of the class!  She would be taught how to  perform all of the moves. I reminded her that she did not know anyone when she began her swimming lesson or when she began school, that she would have made friends.  She said yes I know that now.  I think she is a little sad she did not stick it out but her time has come and gone.  Her place will have gone to the next person on the list, one fortunate child who has got the position that should have been for Izzy. I really wish this child of ours would toughen up but sadly it seems she is just not the forward pushing child she needed to be when she had this taster.

Pain free times ahead

I note that my tennis idol has had his hip resurfaced.  Colin has had his done a few years ago.  I really hope for Andy that he can return to tennis but sadly I do not think he will, at least not in the capacity that he left it.  I wish him a speedy recovery and most of all to be pain free at last.  How wearing to be in constant pain so though he faces a life without any more wins at Wimbledon he will at least come back to the game in one way or another. Go well Andy.

Brexit

I am not getting into the politics of this one on here except to say how I wish they would all get their acts together and stop behaving like kids in the playgrounds.  This is a huge thing for us and we need to at least try to get along.  I have been watching politics live on television and admit I sometimes cannot make sense of what they are talking about.  I think a big problem is that when we had the referendum three quarters of the MP's wanted to stay in the European Union so how on earth can we expect them to vote for a policy they never wanted in the first place.  However the will of the people must be upheld and they now need to work together.  We cannot go back and have another referendum as this defeats our votes, it means our will counts for nothing if we can keep going back until we get the vote they want.  A lot hangs now on them coming together and making the very best deal they can for us against a EU committee that is determined to make things as hard as possible for us.  I will be glad when the word Brexit is at last put to bed and we move forward, for better or worse.

Quiet times here

So not really much going on in our world right now as medical issues need to be resolved before we can head off to further places.  The house is as of today blanketed in snow as it fell overnight and we are pleased to see the roof is showing no signs that heat is escaping as we have no bald spots!  I am still searching for the two huge lamps I need for the lounge but fear the ones I see in my minds eye do not exist.  We have friends due over for a meal on Friday so I will prepare what I can today as with ph one never knows how they will feel on any said day.  Another wonderful task I shall deal with is to strip my upright vac down. We rarely use this as my robotic one does such a good job but my cleaner does on the new carpets and it needs a sort out.

I hope your days are more exciting than mine are at present.  We are hoping the snow does not stop us getting the car out to collect Izzy from school. The end of our close does get pretty icy and there were a few accidents last year, minor ones to be sure but non the less I prefer not to have any issues.

I wish each and every one of you good health and safe driving in the present conditions.

Warm love to all and thank you in advance if you would like to comment or click like to this very boring blog!

Carole xxx

Oh, I booked my place at the conference in Oxford in May.  If you have not done it please make sure you do so soon as I am told places are going fast.


  




Tuesday, 15 January 2019

MAKE THIS THE YEAR WE GIVE BACK

Now before you all say " I do what I can for ph - as indeed I know that many do - there is still much to be done so I plan this year to go all out and do even more for ph than I have before.  There is something exciting coming my way hopefully but I am sworn to secrecy yet but I am praying it is a HUGE game changer for some in how we are monitored with our illness.  So once more I am going to ask each and everyone of you to search your overlarge hearts and see if you can think of how we can move forward. Whether it be in raising awareness, much to be done still in this field or even having a bake sale to raise money for our much needed small charity. Try to get involved in the numerous studies and trials always coming up.

I know there are people out there, - not necessarily having anything to do with ph personally  - that you may know that do charitable things.  Please can you ask if their next run for charity is for ours, or the next bake sale. Schools often do small things like this but if we do not make them  aware then our name is not on the charity list where money raised is headed. Can you talk to your head master and explain and just ask the question, CAN IT BE RAISED FOR US PLEASE.  

I have a funny feeling in my bones. I have had it a while now that we are teetering on the edge, that it just needs the necessary push until we get the long awaited cure. I do not do resolutions for the new year but this is not a resolution.  I know that this is vital to us all to do all we can.  

In Sainsbury today I saw mincemeat for pies down at 10p from £2.25, this is for the Taste the Difference matured type. A few jars were bought by me and quickly went into my baking cupboard in the hope that when I talk to Izzy's head teacher later in the month I can persuade him that his next bake sale is to be for us. I shall get in touch with our wonderful PHA society and get all the things we need to raise awareness and bake away to my hearts content hopefully knowing I am doing this for our US for PH.  I also found some really pretty bun cases which were reduced down to 30p.  These are so cute the kids will love them so along with all the pies I shall bake some cute buns too.. I just need to talk, ask and work at it. Can you do anything at all to help us.      WE NEED YOU.   

Christmas heartache for the family of Carol Byrne and Mike Binary

Carol and I were not facebook friends so I know little about her ph fight though I do know anyone with ph has a phight on their hands. Sadly on the 23rd December Carol lost her fight, I believe through pneumonia but my knowledge is sketchy so if anyone knows more then feel free to add.

I opened another post to see of he death of a young man called Mike Binary who I believe lost his life at the young age of 31.  He got his transplant but sadly did not wake up from the operation. Once again so very very sad and is excitement and hopes for a new life after his transplant did not follow.   My heart hurts so much for the family. I saw his picture and he could be my boy. It does not bear thinking about.     

As always when we see yet another one of our ph brothers and sisters losing their life to this we all feel their death deep within our hearts, our souls.  We are only human and wonder what comments we will get if we lose our phight, how devastated our family and friends will be. My heart goes out to the family of Carol and Mike who must be in absolute bits.  I never want to lose the pain I feel when we lose somebody to ph, even though I never knew them, they mattered. We are all united in a real and great phight and we all stick together to offer our support. So one again we send all our love and support to her family and hope that they can find peace knowing she is no longer suffering.

Because of course as we do not show ph we are not suffering RIGHT - Well absolutely WRONG. I was told on quite a few occasions over the festivities that I looked really well so in some minds I AM well. I can assure you I am not. My battle to see if I had cancer ended at last at my clinic appointment with the words " You are clear "  so once more I dodge a bullet until my next colonoscopy later in the year where no doubt I will have grown more of the pesky polyps that would turn to cancer if left.

We discussed my need for ferritin but he is so in the dark with my illness that he said himself he is worried it will do damage to my heart. I begged him to ring my specialist but he says he wants yet ANOTHER blood test, must have had six or seven showing low ferritin and now last one anaemia and then he said he will have a conference with his colleagues to see if they feel they can move forward with this. I have never encountered any of this before in my need for ferritin but hey ho, I will comply with all that is asked of me as I am aware that it is so rare and he has my best interests at heart.  I tried to explain to him that lots of us with IPAH get low ferritin, I  believe due to the BMPR2 but he really did not understand it at all.  

After saying all of that we do learn to live our lives to the best of our abilities. We rarely complain  we PHers do we, we just get on with it. PH is not mentioned in our house any more.  This is because it is a separate part of our world, so unless something really bad jumps up and bites us on the bum we just skirt around it. I never want people to not to want to be around us because of our moaning and they certainly cannot say that of us. Diagnosed in 2010 and here I am in 2019 I have been blessed.

I feel so sorry for the new ones that have to battle for people to really see their illness when there is nothing to see. Parents telling their kids to get on with it, husbands saying wives are just lazy so it is a sore point of mine. 

On to happier things

Sorry about the rant but sometimes I could scream as we are always sidelined. We were all poorly here over he holidays with one passing on one bug to another only for it to change and come back at us all with another one!  I am seeing my doctor today so hoping to move on with my latest one. So I have not posted much, though I did my admin work and added the new patients. I did not wish to come on and moan when I saw so many suffering REAL things to moan about! Still it was so nice to see a few private messages from some of my lovely friends asking about me and showing concern as  had not been seen around. I was able to reassure them that I am OK with regards to my ph, still pretty stable as we can be. Mine is just the winter viruses. We did however get a two day respite where we joined friends of ours in Lytham.

I love this town as it is perfectly flat so suitable for a meander around it. The guys took all three grandchildren, Izzy and their own two to do scooting down the promenade etc and after a rest even before we started - had to let these blessed lungs get off to the best start possible - we hit the shops.  I bought a lovely grey trouser suit ready for our conference. The trousers were about ten feet too long but they did not have my size as I am a little squirt so they are now in the shop being shortened.  Along with a pink blouse  think it will serve me well. A stop for rest in a lovely pub was the order of the day and the reality is we were only out for a short time but enjoyed it very much. The beauty of these particular friends is that one has an invisible illness too, not mine but we totally related to her.   

Back to watch the kids in the swimming pool then a decision to be made about where we eat. In the restaurant the evening before we had to wait over an hour, the kids were very hungry and though the staff were very sorry, ours had been overlooked. A free drink does not suffice for hungry kids so we decided to go out the following day.

Sadly the closest place was something called a Toby Carvery and we decided to chance it. My word were we wrong.  It seems you have to take a huge plate and get meat given and then pile on your veg.  I eat from a small plate and asked if I could do here. No was told to me emphatically. I decided against that then as I only wanted the tiniest sliver of meat and a little of veg. So as I went down the list of what was available but he kept on saying no - its off - no - its off -.  Eventually I decided on a prawn sandwich. Wish that had been off too. The bread it was advertised with was off as well, surprise surprise so I settled for sour dough.  The prawns were halved lengthways, so tiny slivers, not the plump juicy ones I had envisaged and were freezing cold so obviously just our of the freezer.  The dressing was so watery as the prawns threw water into the dressing as they thawed.  It was abysmal.  The kids too were told most of the dishes were off.  In time they decided on chicken nuggets. Now they must not have had them either but tried to improvise by taking a slice of turkey and dipping it in batter then burning them in the fryer - yes I did say burning them, no typo  The result was four burnt objects they could not even bite. This meal was supposed to come with garlic bread. It arrived with two blocks of something the size of house bricks. I told the waiter I had built a house with bricks softer than these and he admitted that they had run out of garlic bread so used the sour dough, cut to three inch thick blocks. When the kids picked them up they said they were heavy. Their meals were not eaten either. In the end it was so terrible we all actually started to laugh, particularly as this poor waiter said when he went back in to order the children's meals after the fiasco with mine and they told him they had no garlic bread he said he dare not go out and tell us that so they improvised. Always trying to find a positive in a negative we have made it part of our memories to look back and laugh over.

We went back to watch a magician. Apparently he had been on the X Factor, I do not watch it so  I had never seen him before but as we were there I decided to make one up in the entertainment room.   He was very good with the children and he actually made us laugh a little too.

Following day we went into Blackpool so that one of our team could sit in the ballroom where the dancing goes on for strictly come dancing. I thought the kids would be bored but they were fascinated, even dancing around the rooms two by two and sometimes three. They all declared it was so much fun and want to return again to dance so that will go on the agenda.  

Despite illness we have had all the family around and enjoyed their company very much. When Colin's family came they wanted to do the games they played when their dad was young. Of course we complied and much fun was had playing the game ring on the string, might try it with my lot next year.!

There is much chain sawing going on here right now as the store is ready and once all the wood is split, stacked and away we can begin to level off our garden ready for the spring. I keep watching garden projects to try to glean some info for ours.  Looking forward to it getting into shape.  

This afternoon I have the boring task of checking out all our £1 £2 and 50 piece coins that just might be worth a bob or two more.  We have emptied money boxes where we keep them and most is ready for the bank but we have pulled out quite a lot of them that just MIGHT be worth a little more.  I know for a fact that last year I handed on to the bank the two of the most wanted 50 p pieces so I am more vigilant nowadays.  

Colin is hoping to go away by himself in our motor home for a few days next week. I have hospital appointments so will stay home. A good friend will come and stay with me, plus we have family at the side of us so all is well if any bad turns are taken. Our cleaner and her hubby generally house sit for us so later in the year they are really looking froward to stopping here as it will be the first time for them in the new house. I do envisage alarms going off a lot until they get their head around our complex security system but feel sure they can sort it. 

I ordered something for our lounge yesterday which will be delivered tomorrow. As I have not told Colin what it is I will remain quiet about it until tomorrow then take a pic and post on here. Still searching for two huge table lamps to sit on our side tales but not had any joy yet.

(I wrote this blog two days ago so the said item arrived and Colin loves it. It is the mustard yellowy footstool and complements our lounge well.) 

Izzy is here practising her piano for her lesson.  Now she has done them she is happily playing alongside her granddad things not on her to do list. Lovely to see them sitting side by side and playing away.  

Our log pile

We had a call from somebody felling trees close by yesterday. He said he noticed Colin was swinging his axe chopping wood. I could not hear him very well and thought he was accusing us of taking our wood  from his!  I was quick to say it was all our own, we do not steal and he was equally quick to come back to us and say he knew. He said he and his friend had sat in their van watching Colin swing his axe and were very impressed, hoping they can do such a good and neat job themselves at his age.   He said we can take as much as we like from all the trees he is chopping down and for me to inform family and friends of the free wood. So at the moment we have three people who will take up the offer  but the truth is there is so much we could do with another 20 to clear it.

Oh the dratted tap

As we now rent out our apartment we of course know that things that go wrong are down to us, no problem.So at 8.00 am on New Years Eve we received a call to say that the hot water tap would not turn off. A neighbour went in and turned off the water for her but we knew we needed to move fast.  Plumbers tackle was out of garage and in our boot of the car in minutes as we sped away to see what the problem was. It turned out that it needed a whole tap as the gubbings inside had all split. No issue as Colin in another life, many years ago was a plumber before he went into making and installing equipment for the disabled.  Off he went to B and Q to buy another tap and soon all was sorted - result one happy lease holder.  Fine that was until the following day when we were just about to leave to have our few days away with friends. A plaintive wail that the washer would not fill. I asked Colin if he had remembered to turn the water back on and received a dirty look, of course he had. On then with Izzy in tow as she was coming with us. Whilst Colin was again getting his tool box from the car I went inside the apartment, opened the cupboard and turned on the electric to the washer - hey ho off it went.  It seems that she had turned off all electrics as well as water under the sink. I just hope that this settles down in time as so far I have been summoned once when the washer did not work - she did not press button to start it. Once when the cooker did not work - no electricity to it as she did not turn it on, despite us leaving it on for her it seems she is a little paranoid and everything wants to be off for her. Another call out to show her again where the electricity meter is and one to retune her tv from her old place to this. Whilst we are happy to help I am dreading the time when she will call each time a light bulb blows etc.  

Why get so upset

As admins we add or not people we believe are genuine.  Of course we do not just admit anybody, we have to ask a question or two. A gentleman asked to join us the other day and I went back to him and asked him one or two.  He was not having it and asked what right did I have to not admit him just like that. I had no chance of getting back to him as he blocked me immediately, otherwise I would have told him quite why we do it, to give us some privacy from people not suffering and some who wish to hurt us in sone way.

As I was waiting for Izzy I was grateful to receive notification from an admin from another ph group informing me that she could see we had a hacker. We are always so grateful that we all look out for one another.  I could not do anything from Beth's post to me  but happily Nicole Burish  was able to delete the person and so keep us safe.  

So another new year, another new beginning. All I want is for us all to remain stable until a cure is found, not much to ask for really is it! Also a cure for all illnesses, imagine an end to them all. All suffering gone and peace on earth.  

Today a friend (an ex matron) and myself are going out for lunch with a friend who has had a stroke.  It was this friend who wanted our apartment so that she was in the ideal place should anything happen to her. She changed her mind as she could not be bothered to move. Now she is in an abysmal tiny room  and is wishing she was in our apartment where the lift is brilliant, cleaning staff do a great job, no gardens to cut as we have gardeners and a beautiful well contained space.  I feel bad for her but cannot and will  not evict our tenant They are now looking for another home for her as she only has another three weeks in this one So sad.  

Warm love to you all and try to stay away from the bugs. Comments or likes are appreciated very much.  Please take care.

Carole xxx