Monday, 14 May 2018

PH THE SEARCH GOES ON

Seminar for new insights into pulmonary arterial hypertension

How I would have loved to attend this particular seminar.  It is being held at the Royal Brompton and Professor Martin Wilkins from the Imperial in London along with Stephen Wort from the Royal Brompton are talking about all their ideas for new treatments and of course their hope to find us a cure.  I was fortunate to be in the care of Martin Wilkins for the DCA trial and I know well his commitment to bringing us all a cure for our shocking disease.  Sadly we have decided it will be just too much.  A trip to London from where we live is not just a couple of hours car ride.  It would also mean staying over in a hotel and we just cannot afford the time as our house continues to take that up well enough.  The parking sounds a nightmare at the hospital and the trains and tubes can be very tiring so we have decided to give it a miss.

I am reliably told that there are still lots of ideas in the pipeline and this debate is how to prioritise them.  I hope if anyone one of my ph family attends they will be kind enough to give us a brief synompsis of how it went and of any new ideas.  As ever so many are working hard for us to bring an end to this disease and I will always have hope until all the breath has left my body.  Never say never.

Link to Latest PH News


My little red rooster mask saved the day

OK so it makes people turn and stare, it makes Colin laugh but do I care, not a jot.  My red rooster mask as Colin calls it came in very handy last week when I went down to the new house.  As they were still plaster boarding the air was thick with the dust from where they were cutting it.  As soon as I stepped foot into the house I did an about turn and left to get my mask from the car.  What a blessing. It  meant I could go around the house, stay whilst discussing ideas and thoughts with the builders and still leave whilst I could breath.  I have never been so happy to look so daft before as this mask saved lots of further complications with any lungs.  So smile, or laugh or even ridicule, these masks are here to stay and another order will be made soon for a new supply.

Debate over children

In the UK I have seen a few articles over whether grandparents should be paid to take care of their grandchildren.  As ever there were for and against on this one.  I do "get" both sides of the argument but for me personally the reward is enough to see Izzy growing, being included in all aspects of her life and us helping to shape her future..  I am blessed to have watched her grow into the lovely delightful, funny confidant girl I see for two days each week and her sleepovers.  I think an occasional bunch of flowers is nice, just so you know that your efforts are appreciated and for me that is enough.

When I was down at the new house on Saturday she came out of hers holding a card she had made for me.  It was so sweet, a get well card.  I said how nice it was but said I am not poorly now though Izzy,  am better.  She smiled sweetly and told me to save it for when i was next ill!!!

I was sad to note that there is still bullying going on in playgrounds for children with red hair.  Quite why people bully over this I have no idea as red hair is stunning.  We have a grandson with the red hair and I also had a friend who had beautiful red hair.  We went on a cruise and often people remarked on how lovely the colour was.  How sad to see that children are bullied over such a detail.  Bullying can destroy a life, sometimes even leading to suicide as we see is happening more and more nowadays.  Beautiful lives gone in an instant, all that potential lost because of some sad person or people being awful to them.  It hurts me to read this and I wish we could stop it but I do not see how.  I pray Izzy never gets bullied and continues to have a happy school life ahead of her.

The house

Well what can I say!!  Colin works so incredibly hard on this.  This weekend he was digging trenches ready for the gas service to be fitted.  It was made particularly hard as the trench had been dug previously by him but as ever builders rubbish and been thrown into it, big lumps of concrete and bags of sand etc.  Where cement and sand had lain together as it rained of course it turned it into a solid immovable mass that had to be pick axed into pieces before being taken out.  I hope today things come to fruition and he can complete it to the satisfaction of the gas board and then that is another job put to bed.  Izzy came out to help him with a fishing net and her gardening gloves on, yes very helpful Izzy.

We haver chosen and ordered all the new electrical equipment for the house except for the extractor.  We do not seem to agree on the style of this one so we will keep looking.  The doors, oh those internal doors - we need twelve and it has been a nightmare choosing them,  do we go for a nice grey colour as this seems to be the trend, doors with strips of aluminium in them are also all the range now.  We have oak doors here and so want a change so they were out.  Think of the painting if we go for white doors, the list goes on.  At last we decided on a really lovely door, yes white but a little different and we are having them pre finished.  This means six or seven coats of paint are applied in the factory and the result is a door so smooth that can take knocks more than if we painted them twice.  We think it is worth the money as the thought of all the work getting these doors to a lovely sheen would be a nightmare.  Oh to be young again when things like this were not of any real consequence, we had the stamina to do anything.

A plasterer arrived to check out the house and to give the builder a quote.  It was gratifying to see him stay and look at the views from the various windows and tell us how lovely it was.  It makes me more determined than ever to get into this house and enjoy all that it has to offer.

Karma - for sure

The day has been so gorgeous I decided to go and see what was happening on the canal.  Lot of boats but not many people walking at all which surprised me.  All was still and peaceful for a while until I heard a lot of shouting behind me.  I turned in surprise as they were shouting so loud to see two men on bikes racing each other on the side of the canal!!  Sheer lunacy.  Well I was not going into the brink for sure over these two lunatics so i moved closer to the verge and away from the canal side.  With shock as they came by the side of me I heard a squeal and a clang and clatter and one of the bikes, along with its owner went head first into the canal.  How on earth his companion managed to not follow him is a surprise as he was right on the edge.  In an instant the one in the canal was cursing and attempting to get out of the water whilst his friend laid his bike down to help him.  What did surprise me was their ages.  They could not have been less than 30 year old each, maybe more.  Now maybe stupidity can be expected in the young who have not been taught better but the sheer madness of these two was beyond me.  I left them to it and continued.


Not too far on from this I looked into the canal to see a baby pigeon flapping its wings and wandering all over the water.  It clearly could not fly out so obviously something was wrong.  A couple were headed my way so I told them of my dilemma.  I clearly could not leave this bird to die, it was in distress.  They agreed and we three waited until it flapped its way to the side where the young man carefully reached down and lifted it from the water.  What an awful sight.  It had obviously been badly hurt, attacked by a crow maybe but anyway all its head was in a terrible state.  There was no way the bird was coming back from this but I have to confess I could not ring its neck, not even to stop its distress and neither could the other two.  Awful though it sounds we left it settled on the verge in the hope that its end came soon or somebody else saw the state and could do the deed.  Goodness I do not kill spiders, I lift them carefully and take them outside.  This has left a sour taste in my mouth I confess and I hate my cowardice but there it is, I am being honest.  Poor baby bird.  

Hope you are all taking advantage of the good weather we are having as I believe it is going to change by around Thursday.  I intend to make the most of getting out while I can though the heat really gets too much for me.  I just do what I can then hoe to rest.  Enjoy it doing what you can.

So all for now and I love you all and leave you and say many many thanks for bothering to read my rambles and for the comments and the likes.  

Warm love

Carole xxx



Saturday, 28 April 2018

SAD DEATHS OF TWO MUCH LOVED PH BROTHERS

Goodbye our ph brothers

We lost Glenn Shakotko and Pete Duffy recently. They both suffered from pulmonary hypertension. Once again it sent much sadness around our communities and much hurt was felt by the many that knew and loved these men.  So once again we all live with the horror of losing more and more of our ph family whilst waiting for a cure.  I KNOW they are working hard for us but a cure even if it came tomorrow is too late for our ph brothers and sisters lost to ph.

I never knew Glenn but I do know by the shock waves that went across our community that he was a very popular man in the world of ph.  I believe he had fought for 15 years this terrible condition.  He did not let it stop him though and he lived his life to the full, I know he was an amazing shoulder to cry on for many of his ph friends.  Apparently he was always happy to talk and to give advice to anyone that needed him.  So why must we keep enduring these losses, all good people, ones who make a difference.

Pete Duffy

Now Pete was one of our own here in the UK and he lived not too far away from me. We talked often,  sometimes by telephone but mostly on our forums in the long dark lonely hours of the night when all kinds of demons come out of the closet, scurry into our heads and make us have a need for somebody facing the same issues.  How many times would we open our computers in the early hours to see Pete "talking" to other ph friends.  Often he would tell us he was feeling hungry!  So would begin conversations with some of our other ph brothers and sisters who could not sleep.  Pete would often worry about his two precious girls, he was so very proud of them and feared leaving them without a dad.  Suffering with other issues Pete struggled for quite a while before his body said it was enough, it was time to leave this earth.  His loss will be felt by many on our forums here in the UK and further afield by those that were friends with him.  

So what kind of low life are you.

Some low life went into our new house and cut out all the electricity cables, likely for the very small amount of copper in them.  At best they would not have been paid more than £10, though the cost of new undamaged cables is of course expensive.  They would have had to take time to strip it and then take it to a place that buys copper.  Hardly seems worth the effort for them though of course it took our electrician hours to put all the cable in place. 

After they had completed their theft one of them then decided to poo in the jumper left by one of the builders.  No doubt their small mind thought of how funny this was!  Now all the work needs to be redone again taking time and money to get it back to where it was before.  { the builder said he had heard all the poo jokes ever written since this incident} !!

A lesson learnt but too late.  The builders had been told time and time again to secure the house.  Our windows were in but we did get the fact that they wanted to leave the doors until last as lots of going in and out with work tools  would be going on in the house and they wanted no damage.  They were supposed to block off all the entrances with wood, keeping only a small wooden door for the builders to get in an out.  Maybe they were too intent on doing the jobs inside the house but it has cost the building company dearly.   On the positive side the wooden doors have been fitted all around now which leaves a secure house as long as nobody leaves a window open.

We are led to believe it was kids, the height they cut the wires was not too high, no ladders were used, though there were plenty around.  A professional thief would not have left a scrap of wiring in the place.  I hope this is not a portent for things to come.  The area is a very good one with beautiful houses, I pray we are not seen as an easy target right now.  For us it has not cost anything. the onus is on the builder to insure the property whilst it is being built.  I hope we do not encounter another incident such as this again.

Getting better

Life has been pretty awful for the last two or three weeks.  After my trip and overnight stay at the hospital I hoped all would soon be over but no, I was slammed with an almighty chest infection.  I took my emergency antibiotics but they were having no effect really.  A visit to the doctor and he gave me some different ones that make me feel pretty bad, cause sickness etc BUT they are working well with my infection.  Only another three days to go on them thank goodness.  

It is rare I get scared with illnesses and my ph but I admit that this time I actually did.  Being immobile in bed, too much effort to do anything but to try to get breath into my lungs made my mind wander to a dark place.  I could not get out of bed without help, could not wash etc and the effort of holding anything was too much so not even all you guys on Facebook to connect with!   I ate the bare minimum which concerned Colin but the effort it took was not worth it to me.  

I thought about death, I admit it.  I did wonder if this was going to be my end. I know chest infections can mean the end for us so of course this came into my mind.  I wondered who would miss me, the family and friends who I no longer connect with, would they miss me when it was too late?  I worried about Izzy.  Would she remember me, had we done enough for things to stick in her little brain that there would always be a small part of it reserved for me.  Of course my children came into my head, thick with a headache so bad I felt I could scream.  Would they ever really know the depth of my love for them.  I wondered f they would still miss me years later as I miss my own parents.  I wondered if I would die without them by my side, without that final hug or touch of a comforting hand. 

Strangely enough I was not scared of death, in fact at times as my compromised lungs were screaming for the next intake of breath that barely touched them I would have welcomed it.  It just seemed too hard to keep going.  But bodies are remarkable things and the healing properties it contains gradually made little dents into my fluid filled lungs, daily I could feel myself improving, though only marginally at first until I woke today feeling a lot brighter.  Yesterday though I was hit with a sickness bug!!!  Well not a bug as it did not last long but boy did it slam me.  I barely made it to the loo where I was left on the floor a shaky mess.  I could not stand up afterwards despite trying so hard.  I think my body had needed time to recover from my infection and this last assault was just too much.  Fortunately I had my phone with me so I rang Colin and asked him to come home.  In minutes he arrived and helped me to my feet and to my bed....... again! 

We will now see what today brings.  I am up, though not yet dressed but obviously fit enough to be typing this.  My next task will be to order all the new electrical equipment for our new home.  I know that we will not need to take delivery until the time is right but this is a job I want putting to bed so to speak.  It is a job I can take care of as Colin has to deal with so many.  

Today the last of our holes for the air intake system we will be using will be completed.  In around one week all the scaffolding will be removed from around the house as all works will be internal only.  

I know the plans have been sent off to whoever it is that deals with our underfloor heating and I know the final level of the said floors.  Plumbers have put  in essential pipework etc and the house is so fully lagged you would not find an inch of space to add more, even the garage is fully insulated with this space age stuff they are using.  Our bifold doors came yesterday and were fitted and I am told they look really lovely.  Holes have been cut into the walls to enable us to have the fire we struggled to find a solutions for before in a sealed house, we found one!!  So daily an army of men go to work on bringing this house to completion.  One thing if any burglars try to get into the house again they will be in for a nasty shock now as the builders have fitted temporarily devices that would take pictures of them and alert the authorities.  Wish it had been done sooner but I feel a bit more reassured now.  

Once it is finished I intend to have all the new gadgets that show if anyone is lurking around your property wherever we are.  I have no reason to think it will be needed, the area is a good sound one, the thieves likely being opportunist kids, but the truth is nowadays nowhere is safe.  How sad that we live in a world where people steal and destroy others peoples property.  

Malham 

I want to escape!!!  I think both of us could do with time out.  As May day is coming up we want to avoid that like the plaque, too many people around to be able to have a nice peaceful time.  I have been looking at places we have been to before and really enjoyed.  I always remember Malham and the peace of this place with so much of interest surrounding it.  Malham is a village set in the Yorkshire Dales.  Rolling hills greet you and limestone landscapes surround you here.  Yet there is so much to do if you want to explore.  For those who enjoyed Harry Potter the cliff just half a mile away from the centre was the backdrop for the Deathly Hallows.  Just over a mile away is Janet's Foss,  a truly wonderful waterfall reputed to be the home (behind the falls) of the Queen of Fairies.  So for the whimsical ones such a lovely place to visit.  The pool was originally used to dip sheep in many years ago but now many a travel weary walker has stopped to take a refreshing dip here. 

For walkers who enjoy a scramble my husband and I walked through Gordale Scar and enjoyed such a beautiful valley and limestone ravines, well worth the scramble at the end.  To top off the wonderful place there is a glacial lake called Malham Tarn. I have eaten a few picnics sitting by the side of this tarn in my time.   This tarn was the inspiration for the book The Water Babies. A Fairy Tale for a Land Baby.  This is the highest lake in England being 1,237 feet above sea level and only one of the eight upland alkaline lakes in Europe.  

So you can see why I simply must go back and hopefully this coming week.  I know I cannot explore it all as fully as I have in the past but I intend to see and do as much as I can.  The last time we stayed we resided in a lovely hotel called Beck Hall and I want to go there again.  The history of this place is so sweet.  It nestles by the side of the river and it used to be a wayfarers hostel back in the 1920s.  Years have rolled by and now this quaint cottage has grown to become a truly lovely place that has the most beautiful rooms and an amazing menu to enjoy after a day seeing the sights surrounding the area.  If anyone fancies going here that owns a dog then know that it is a dog friendly hotel.  Why I love this place is that it is set in such beautiful surroundings and if it is not a day to explore due to ph the gardens themselves are so lovely to try to meander around.  sit and listen to the river tumbling over rocks while you rest a while.  Go and try it, you will not be disappointed.  

So hopefully when Colin returns today I will be in a position to know if it is feasible, if we can go away in the next few days or if the house will once more demand his attention.  He is thinking not but  the house keeps throwing us a curve ball!  We shall see.  

Tour de Yorkshire

This bike race begins on the 3rd to the 6th May, with the final stage passing within 200m of our home.  Colin will go to take pictures of them departing from our famous Piece Hall, newly renovated and attracting lots of visitors it is a perfect place from which to start  I wish them all a great race and a safe outcome.  Watch it if you get a chance, we have lots of hills around here to test them and the most amazing countryside.  

Izzy

She has won another award from school and so wants granddad to go and see her receive it.  Though I would love to go I think I need a day or two to come around from my illness so i will spend the day pottering and dealing with kitchen stuff as I said earlier.  Izzy is upset already at the thought of leaving her teacher behind when she moves up a class, she declared him to be funny too, something she believes her next teacher is not known for!!  So already the dread of a new class is looming for her.  I know she will be ok when the time comes, children are naturally  resilient and she will forge ahead when the time comes.

In the meantime she continues to be very happy in our company and enjoys staying over with us but the most heartwarming words were spoken by her a few days ago.  My daughter rang to say that neither her or Chris  would be home when Izzy arrived there from swimming so would Colin use his key to go in and, of course, sit with her until one of them returned from work.    Izzy rang me and said "grandma I am home and neither of my parents are here".  Of course she was fine with granddad but was just making a statement BUT what a statement.  She did not say mommy is not here, or Chris is not here but BUT that neither of her parents were there.  My heart soared as it means the three are now family.  Chris is no longer the outsider with her but has become her parent!  His hard work at showing her he loves her has paid off,  so this family unit is now strong.  She tells me she loves Chris and I can see it when I see them together.  I am happy!!

Enough from me now, I must away to attend electrical things!!  I hope you are all doing ok.  Enjoy the May Day for those in the UK,  I have not looked to how the weather will be but whatever your plans enjoy them.

Thank you for reading and for those that advised me on various things through this recent illness your help, as always, was invaluable.  

Warm love

Carole xxx




Monday, 16 April 2018

RESUSCITATION - TO HOME THANKFULLY

Thank you all for your well wishes after my weekend spent in my local hospital.  I was very touched once I arrived home and read them all.

I am ok.  I need a little rest before I get back to my normal ish self!  We know well with ph the blips we encounter along the way and this was one of those, though very scary at the time.

As with most of our turns they arrive without warning, mine certainly did.    Colin was talking to me in the car and the sound of his voice was getting unbearable as my head was ready to explode.  I felt sick and my heart hurt and also down my left arm and shoulder.  I must have been squirming in my seat and Colin looked over at me and said my face was vey red with traces of grey. We were on our way to an office to sign some papers and I thought by the time we arrived I would feel a little better. .  

By the time we arrived at the office my legs just did not want to walk.  I sort of shuffled in and sat down as soon as I could.  A drink of fruit tea was given and I thought I would soon come around.  No chance.  However I am not one to give in so insisted we went to look at a form of security we were going to get for the house after we had signed the documents at this office.   I really should not have bothered as I could barely stand straight, I kept bumping into Colin as I swayed whilst standing.  We aborted that job but Colin had to practically carry me to the car and I could not get in my seat myself, my legs were turning to jelly.  Once in I actually asked to be taken to hospital.  I hate this as I knew it meant the end of any hopes of a holiday abroad for a whole year.  We are always asked if I have had any unplanned hospital visits in the past year, planned ones are ok but unplanned means they really will either bump up the insurance or not insure at all.

As Colin was taking me into hospital in a wheelchair I said I thought I was going to faint.  I felt so bad.  Once in a room with somebody taking notes I just felt myself going. Before I knew it I heard the man saying crash and without ado I was wheeled around to Resuscitation.  They got me onto a trolley and wired me up to all the monitors.  The problem was they do not have a clue about ipah and tried to give me nitroglycerin, a definite no no for me.  Then this doctor ( who appeared to have no empathy for anyone in these bays ) said I must have 100mgs of Viagara, Once again I refused as I had only had one an hour before.  The next thing they tried to give me was warfarin.  I explained that I already take 5 megs daily so he went away and came back with something else   Called Gopa something or other.  I just took it, I was beginning to give in.  I had already told them  I was not to take opiates as I was intolerant so he said I could have morphine!!!  Again  I refused.  My oxygen level kept dropping and the beeps kept going off  They lowered my bed head and raised my feet.  After 2 E.C.G's , an X Ray etc they could not see what the problem was.  I tried to tell them it was my pah playing up.  What could they do though, nothing really.  They could not make any sense of my blood pressures as they kept rising high then dropping really low. 

I think what happened was my levels in my lungs must have risen sharply and suddenly to a degree that my body just could not cope with it.  This happens with us, we know that and even our specialists have no idea quite why they go up and down as they do.  Generally we cope with it ourselves but as this was particularly bad we felt the safest place to be was in the hospital.  They were reluctant to ring my specialist hospital, quite why I do not know but there it was  We must have asked them three times at least but our words well on deaf ears.  

In time I was taken to the coronary care ward and put in a room on my own.  My arm began to bleed badly where my catheter was as by this time I was way overloaded with warfarin and the other drug that acts the same.  There I stayed.  At 9.00 pm a nurse came in with 100mgs of sildenafil.  I refused as I had my own but she tried to get me to take hers and not mine.  I explained that I cannot take that particular brand. 

Back in 1989 British Pfizer scientists created a drug called sildenifil citrate as they believed it would be good for controlling high blood pressure.  They coated this compound and marketed it under the name Viagara.  Once the patent ran out, or in this case a deal was made with other companies to make this drug then other generic brands became available called sildenafil.  All well and good and a very good cheap option for the NHS saving over 10 million pounds a year when those taking Viagara were put onto the sildenafil pill instead.  Sadly the coating used by the generic forms made me very poorly so I had to be put back onto the original pill, the one made by the scientists who created it and called it Viagara. My local  hospital had the generic ones and anyway I always take my own.  I think I was an enigma to the staff as they were batting in the dark with an illness not known to them  I did have a couple of doctors come in and ask if they could listen to my heart as they had never heard a second heart sound as ours has. 

A very restless night with them coming in and taking bloods etc and another tussle in the morning when I had to refuse their meds in favour of my own.  I know it is absolutely not their fault, but I was feeling frustrated as they would not ring Sheffield!  In the afternoon a consultant cardiologist came in to see me.  He was really nice and was shocked he said when he learned what they had given me down in resuscitation.  It was no surprise to him then to see the state of my cath site due to being overloaded with meds for my blood.   He listened to my heart, checked my ankles, which were still slim so not water logged and of course as always looked at the right side of my neck.  He expected it to be bulging etc but it was not. 

He admitted he was at a loss as to what to do to help me.  He wanted me to stay in another day as my colour was still high and my legs very weak and wobbly.  Colin and I talked and decided we understood pah better than them and now the crisis was over we could deal with it at home and at rest.  Though the doctor  agreed that we knew better how to cope with it than they ever would ( and this episode absolutely showed us we were right  ) but said at least if anything went wrong I was in the right place in the hospital.   I did not say it but I thought differently.  Had I taken all the drugs they tried to give me in resuscitation I think  would be dead or in a very poor place right now.  

I understand what they were doing was the correct thing for somebody having a heart attack, but not for me.  They did their best, their intentions were good but my faith was lost.  Had they made a phone call to Sheffield as we asked I would have more reassured that they would listen to others that knew my illness better than they did.  We promised if I felt bad again I would go straight back and we went home and I went straight to bed.  

I had a good nights sleep and I feel I am coming round again,  not well enough for a walk yet, staying put at home is my only activity for the day but I do feel relief that this crisis is over.  

Hopefully tomorrow we will be going to a granite factory where we can choose the piece we want for our new kitchen.  It all seems overwhelming does the house right now, maybe that is what tipped me over the edge so I have enlisted my daughter to look out lights, pendants etc we need for all the rooms.  It sends my stress levels too high which we know is really not good for us.   Anyway she has really good taste so I know  I will not be disappointed.  

So that is all for now, just wanted to update you all and to again thank you so much for messages of well wishes and support, it means such a lot.  Colin was astounded to see all the messages but I said that is what we do, we support each other! After all we are a rare breed and nobody knows better than us all the vagaries that come with our very rare condition.   

Love to all

Carole xxx

Wednesday, 11 April 2018

THIS IS ALL MY FAULT. I am an idiot.

I cannot believe my stupidity that brought  me to how I am right now.   Something so very simple has knocked me off my axis and flat onto the floor.  I deserve this as I knew the rules about ph, knew what we could and could not do safely.  So why did I disregard them and think I knew better, that all would be good.  The only good thing about any of it  is that I thought I was doing good, believed I was helping my friend.  So now I pay the price and am waiting until my PAH stabilises  ( hopefully).

I have an iRobot vacuum cleaner.  I call him Robert and he has done an amazing job for me over the last thirteen years, working really well with very little maintenance.  His battery needed changing, a cost of £40 so I decided to have an upgrade of him and get one of the newer models.  I was telling my friend this and she asked that I give her my old model,  of course she would pay for the battery.  My new iRobot arrived as did the new battery for my old faithful one.  I changed the battery and cleaned Robert so he was sparkling and ready to hand him over to my friend.  She was too busy  to help me as she had a crisis on, and as Colin was very busy in our new house I decided that as I had been doing so well with walking etc I could do it.  I could bag up Robert and all his paraphernalia into two bags and take him to his new home.  She lives opposite us virtually in the park and up three lots of stairs.

The stairs would have been ok but the weight of Robert was not doing me any good.  I could feel myself getting palpatations as I climbed each stair and halfway I truly thought I would faint.  I could barely see, my vision kept going odd on me.  On reaching the top floor and her house I threw myself onto the sofa.  She was very busy trying to sort out a scam from Talk Talk so I just sat until I felt I could get myself home.  My bed was an absolute MUST place to be and there I stayed until Colin arrived home. As I told him what I had done he was rightly cross.  He would have carried it over himself later.  I truly believed I would feel better today but I really do not.  My legs are very shaky and my head very swimmy. My hope is that I have not put too much strain on my heart that it has caused irreparable damage,  Time will tell but I know for a fact I will never make that mistake again.  My life is more important than getting a vac to an elderly neighbour.  I will learn to say no.  My specialists know much more than I do about the can and cannot of ph.  I have learnt a valuable lesson.  No matter how well I feel I am doing I must still obey the rules of ph, I am not invincible.

( Two days later and I feel ok  I actually walked to our new house so I managed to get my steps in, feeling thankful)

Izzy

I took her to see an eye specialist as she seems to be leaning closer over her books wherever we read.  As I had my first pair off glasses quite young I am aware that even young children need eye tests early.  I have since had my own eyes lasered so have no need of them but she just might have.  Izzy was very nervous but she need not have been  The specialist has a girl of his own aged 7 so knew well how to put her mind at rest.  She did really well and at the end of the appointment he told me that her eyes were good, in his words they were 20/20 or even better if that was possible.  Now how can you get better than 20/20 I just do not know but anyway we all left feeling grateful that she is O.K. though she was a little sad as she quite fancied glasses!  So different to my day when we had the awful national health ones thrust at us until such a time as parents could afford something better.  

Her usual holiday in the motor home came to a disastrous ending after just one night.  Sadly all the rain meant the sites were getting very boggy and the first morning there was a knock on the door and a kindly warden told them that they were evacuating the site, all had to leave as the rains continued to creep up ever nearer.  Home they came, van unpacked again and as Colin was telling me all that had gone on, how hard he had tried to get another site Izzy just ran over to him, threw her arms around his waist and said "never mind granddad you did your best"  I am so thankful she accepts things easily.  Right now she is in Centre Parks with her Nana Joy and Harrison  being thoroughly spoilt and having a super time.  

She has been thrilled to see that the nesting box she made herself last year with granddad is now in use.  There is a family of Blue Tits using the box, the mother is in and out so there is much to look forward to when the eggs hatch and the babies appear.  We love her to appreciate nature but the cherry on the cake was that it was the box SHE made for her garden.  Still not got around to helping her to make a nesting box for a hedgehog but I think it will have to wait until the house is ready now.

House News 

Well this is really moving quickly now.  Upstairs electrics all in, all the insulation and windows are fitted and now they are plaster boarding the second floor.  Colin is very busy with the air control system and he has worn his thumbs down almost to the bone with the concrete.  His drill was not up to the job of some of the work so I treated him to a new one, a stronger, more robust that will easily go through the walls like butter.  He thinks a couple more days and his job will be done.  I know he will feel relief as this is a job never attempted before, very new to him and he has had to feel his way carefully so as not to upset the balance of the eco part of the walls.  I feel a little guilty as today is his birthday and he is working hard and getting very dirty doing this job but it as to be done.   It is not something I could help him with either which makes the guilt even worse but there it is, soon be over and our new house will all have clean air in each and every room on the hour every hour. 

When you get taken short!!!

Most of us with ph take some form of diuretic as our bodies struggle to do the jobs normally taken for granted.  Our organs are all compromised so we accept we need help to cope with certain functions.  I take 4mgs of frusemide daily to help my body expel fluids and it works really well.  On the days I intend to be busy in the mornings I leave it and take it later in the day.  However some days I forget this rule and take a tablet then pay the price, needing to keep running to the loo.  So this made me smile the other day as I was walking on the canal to my church.  Sitting nicely at the side of the canal some wag had placed a toilet in all its glory!  Now it will not stay there for so long as we have amazing people that keep our river and canal clean and neat.  For me though it brought a smile to my face as right as that moment I was just thinking I could do with spending a penny!  I think that the ducks and geese would not bother me whilst doing it but the thought of the walkers and cyclists definitely put me off the idea of making use of the facilities!!  I waited until I reached church.

PH News

I know I bang on about trying to exercise when you can, hard with ph I know BUT the benefits of managing to do some has been proven.  I also take a turmeric capsule that contains the curcumins that we need to help with our joints.  Like most patients my joints did suffer badly but I needed to share this with you.  Once taking the turmeric for the last two months I have felt such a benefit.  I take just one a day as this particular tablet tells me to take, I have LAMBERTS  High Potency but I am sure that any health food store can direct you to other brands.  Along with that I take Vitamin D as this is vital to help our hearts I believe.  I take it in liquid form, two drops daily giving me the correct dose.  

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Anyway I digress this was to direct you to the Pulmonary Hypertension News Weekly Digest and an article that shows patients with PAH outcomes are linked to exercise.  Do not throw the book at me if exercise is totally out of your wave length, I get it.  I still have my duvet days, my days where lifting a cup is too hard but when I feel up to it I like nothing more than to walk, even in the rain with my face lifted up to feel the rain on my face.  I love knowing that my heart, which is a muscle of course is being worked.  My core is benefitting too and all my body feels so much better when I have managed to get this exercise in.  Walking with sticks {poles} might be helpful and we are told that you actually burn more calories using sticks as you are pumping your body more.  

To be honest the calories burned do not matter to me cos I need to confess I eat more when I arrive home!  It is just the sheer exhilaration of doing something that is helping my heart and as talked about in the Digest it leads to better outcomes for us all.  I walk on my own but I also have a friend who, if he is not too busy walks with me.  It always makes the walks so much easier and the steps just melt away.  It is also a good indicator of how you are doing as you should be able to walk and talk at the same time.  

Keith Andacky who was the first patient to have Denervation in the U.S.A.  has had his four week check up.  All appears to be going  well and he is already walking a little further than his test pre denervation.  I am sure we all wish for him to continue from strength to strength.  The more people with this procedure that do well it seems likely that in time it can be offered to many PAH patients.. I know for sure I have benefitted greatly thanks to this and I hope the same goes for anyone else who has either had it or is heading that way.    Always lovely to have a new option on the books so to speak.  

So there you have it  Up to date again.  Once again thank you for reading.  I almost thought about leaving Facebook because of all the mess they are in due to sharing our details to others.  I came within a hairs breadth of clicking off but then I thought of the benefits I derive from it, the PH Sites I am on, all the friends I have made and the fact that I would not be able to blog either so I changed my mind.  I do know that Facebook really needs to get its act together now though as it would not take much for us to just leave.  We need protection.  

Warm love to each and every one of you, go well 

Carole xxx



Tuesday, 27 March 2018

IF THIS STORY OF A YOUNG MAN DOES NOT MOVE YOU THEN NOTHING WILL

Opening my Facebook page this morning I saw the blog below shared by our Lyz Clements  It is written by Rob Scott, no I never heard of him either but boy, what an inspirational post.  A post that might, just might for those of you not on the donor list move you to getting yourself on it.  


Rob is speaking from the heart after a liver transplant.  I guess that what he has written is how most people would feel post transplant and would like to express their eternal gratitude for the gift of life to the family of the one who so unselfishly signed the donation register and the family that let it go ahead..  All Rob knows is the age of the young man that died and helped others to live, he was just 21.

As most of you on the ph website know Lyz herself was a recipient of lungs and is doing so well thanks to her gift.  When she posted this story her heart must have been full with the knowledge that she was given such a chance at life. So please read it, think on it and if you have not yet gone that extra mile and signed the donor register then please do so.  This might have been a blog written by a member of your family.  See how heartfelt Rob is about his donor.  This blog by Rob needs to be shared so I am doing my bit to spread the word.

What if?

Let us play pretend now and let us be totally honest with ourselves.  Set the scene.  You have been given two weeks to live, you do NOT feel poorly in any way so can be free to move around at will.  Money is not an issue, you have more than enough to do what you want to do so the question is - what will you do with your time?

A new day is not promised to any of us.  There is no certainly of a future, but of course we have the hope.  One can be fit and healthy and in a second that is gone, as is shown by the above written by Rob.  I suppose what I am trying to say is we must live life to the full always, never put off until tomorrow and all that stuff.  

I think I would hire a cruise liner and staff etc and pack it with all the people I love first and foremost, then follow that up with anyone I have liked in my life and entertainers galore to keep everyone amused.   With no thoughts for anyone about housework, or jobs etc all concentration would be on enjoying life to the full for all of us.  We could sail the seas within limits to places we have never been to before and enjoy all the new sights  and sounds  and smells of the different lands and the diverse cultures.   I wonder what you would do.  It would be lovely to get some comments back on this one.  

Newbies

I see lots of newly diagnosed people with ph feeling terrified of what the future holds.  How well do I know the feeling, been there done that!  I remember every missed heartbeat and the feeling that this had to be the end.  Every time my legs gave in then there was the sense that I would never walk again.    The pulling into my lungs the precious air I needed to survive.  Of course you are scared but......

Remember many of us here have been diagnosed for quite a few years.  The medicines are helping us and more are being developed.  We are moving on so fast in the world of ph.  OK granted it may not be as quick as you would hope but believe me in terms of new meds we are doing so well now.  Give them a chance, do not give in and above all else fight. Our illness is rare and misunderstood by many doctors.  Our specialist ph doctors are the ones with the answers so if you are in doubt about any treatment given by your local GP then check with your ph team.  There are many support groups out there now for people living with ph, join the ones appropriate to your form of ph and ask questions.  Somebody is always listening and will be happy to talk to you, you do not walk alone.  

DPD

My trusty robot vacuum is not performing very well, poor Robert but he is 13 years old.  He does a bit of a job when I turn him on but he quickly tires and cannot find his way back to his base to recharge.  I know I can buy another battery for him but there are more updated versions out now and I decided to go for it.  I found the one I wanted, paid my money and waited for delivery.  Delivery day was Saturday, oh bummer, but non the less I waited in most of the day until around 3.00 I received a message saying he would be delivered now on Monday.  Obviously the courier had more orders than he could cope with.   I did not worry and responded to the message asking that I be informed within an hour of its arrival this time in order I did not waste yet another day.  

At the allotted time I waited and sure enough the ring came on my intercom saying the carrier was here with my parcel.  All was not as I thought it would be however as he had a parcel for me that was not the one I had been tracking.  When I told him this he said he had another one for me on the van, oh good my new iRobot.  He quickly disappeared and I waited and  waited and waited.  After 20 minutes I realised he was not returning, he had done a runner!  I rang his depot and discovered he had left my parcel on the floor when he unloaded it to put in more parcels.  Now anyone can make a mistake, I can accept that but to be so cowardly as to run leaving me on my own doorstep for 20 minutes is not acceptable in my book.  Of course I rang both the company I ordered Robert from and the carrier company.  All will be sorted but what really riled me was that later in the day I received yet another message from the carrier company to say that at 11.45 they tried to deliver my parcel but I was not in!!!!  Things like this are not good for my stress levels.  If only he had told me the truth, I am a reasonable person, I have made many mistakes in my life.  I would not have done anything else but wait until the following day for delivery.  Instead by his actions he has heaped on his own head a telling off by the carrier company.  I think he deserves it for running away instead of explaining the circumstances.  So today I will collect my new iRobot from a shop that accepts deliveries, I will collect it at my own convenience.  I hope to never set eyes on the driver Malcolm again, if I do he will get a piece of my mind.  

Don't worry about Robert, he will get a second chance of life, I will replace his battery and pass him on to a friend that struggles to push a vacuum cleaner around so he will not end up on a rubbish dump, it is the least he deserves after all the hard work he has done for me over the years.  

House news.

It is certainly moving on. The electrician has been working putting in the wiring upstairs and the guys are quickly following it up with lagging.  Well the first lot of lagging as there is more to come  in an eco house.  I have walked the upstairs room three times now and just love the design.  Yesterday we talked to a joiner about the roof as the difficulty in an eco house is getting lights into the roof spaces, not easy but we are working round all the issues.  Some windows are in, some are not as they are not quite ready for them.

It is lovely now that things are coming together.  We received a call from our tile retailer updating us on where our tiles are now, on the seas coming to us fortunately.  Our bathroom is safe and is in storage, still not got around to picking things out for the upstairs one yet but all is in hand.  We know where the loo etc is to be placed so all piping is ready for when things should be fitted.  

It is all still very messy and still no plaster board up yet which will transform the place but my sense of excitement grows whenever I enter it, my imagination can now take over and in my minds eye I am turning a house into a home.  I spend time looking at colour schemes, internal doors, lighting etc. It still seems far off until we move in but the reality is now the roof is on things are moving at breakneck speed.  

Izzy

Izzy won an award at school again last Friday.  Though we warned her it was unlikely we could attend the church to see her presented with her certificate hope always looms large in her mind.  I decided that no matter what I really needed to go and Colin decided that he would go, though he would be late and would stand at the back of the church.  I saw her walk in and her eyes scanned the adults sitting in the rows and her face lit up when she saw me.  She actually had a seat right in front of me so when I looked behind and saw Colin had arrived I was able to give her a nudge.  Well talk about then the sunshine came out.  How her face shone, she gave him the biggest beam she reserves for him and once again all was well in her world.

Her weekend was very busy as parents and grandad and the two children went to see Dancing On Ice.  Most agreed it was not as good as previous years but I think they still enjoyed it.  Sunday was to be a day at Alton Towers with friends.  I know how she would love that as it is one of her favourite places.

I have been getting her goody bag ready for when she goes away with her grandad next week.  She always gets two new videos so that they can both curl up at night after busy days and watch half one night and half the next. I do not buy expensive ones, often I get them from a charity shop of get the ones that are two for £6.  I bought her a new card game, a couple of very tiny bags of sweeties, and I mean tiny.  I put  in a drink for the journey and a couple of pieces of fruit.  When she comes here she can see the bag hanging on the door of the cloakroom but she cannot reach it.  She touches the bottom of it with her outstretched hand and wonders what it holds.  She loves me passing it to her when she is in the motor home and strapped in ready for off.  Then the much longed for bag is handed over and her exploration of it begins.  Then I return to our place, a friend comes to stay with me and peace reigns again in our home! 

Well now you are up to date with the goings on here, much work to be done as busy times ahead.  I hope this blog leaves you all well and I send much love to you all.

Please please take the time to comment or like the blog if you do.  It makes it worth while writing to you all, it helps me to feel a connection no matter where you are in the world.  

Warm love

Carole xxx






Thursday, 15 March 2018

R.I.P. REBECCA LIDENBURG

Rebecca said it straight!

When Others Don’t Understand How PH Impacts Our Lives



Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly don’t understand that some days are okay and you’re actually able to do things.
They may claim you’re a liar. An exaggerator. A hypochondriac.
In times like this, it’s important not to doubt yourself. Do not bend to fit their wishes, or their limited understanding of pulmonary hypertension. Instead, use it as fuel. Educate them. Talk to them. Tell them how some days are worse than others, just like for them. Doesn’t everybody have bad days?! Perhaps ours are just a little more severe sometimes. Explain to them that our lungs will be different on days when we eat too much salt, when the weather is too hot or cold, or if we are adjusting our medications.
Pulmonary hypertension is not a “one-size-fits-all” illness. Everyone is different. Sometimes that is frustrating. When you’re desperate to meet someone who is exactly like you — suffering like you, feeling the same — you won’t find that person because no one is the same. And I think a lot of times, when people hear an illness term being used, they expect it to be the same for everyone.
You’ll never be 100% understood, and it’s easy to be upset by that or become angry when people don’t get what you go through. But being weighed down by anger and frustration won’t do you any good. It won’t make them understand better, or apologize for their flip remarks.
Remember that you have control over only you. How you react. What you say. How you teach them. How you love them, even when you’re furious that they don’t get it.
They may question it, but we’re living it. So, let’s make it a life worth living.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


All of us struggle trying to get our family and friends to understand our ph.  How it affects us, why we can do something one day, hour, minute and the next it is an impossible task for us to do.  If you struggle to find the words to explain it, bang your head in frustration at them not really having an understanding then you could show them these words written by a ph sister who sadly just lost her life to ph.  Looking good, fit and well on this picture nobody outside could see what lurked beneath and sadly she has died. She was hiding a disease inside her body that most will never have to deal with, never have a true understanding of it.  The words she wrote are so profound, so very very true.   

So Rebecca has died, so suddenly another young beautiful girl taken from her loving husband, family and friends, taken from the ph community of brothers and sisters worldwide.  How my heart hurts for the pain and suffering others now will be going through with the loss of her.

For us as a community Rebecca left us this amazing piece of advice.  Please read it, take it to heart, copy it, do whatever you like but do not be afraid to thrust it into the faces of the unbelievers, the ones who say “ it can’t be that bad” or “she is making it up” etc.  “She/he just wants sympathy” is another  one thrown at us sometimes.  No we don’t, we want a life, a life where we can breath, where every day is not measured in “spoons”.  (read the spoon theory) or biscuits, my blog That’s the way the cookie crumbles.

So I say thank you to Rebecca who left us with this wonderful article about living with ph.  You inspired many on their ph journey and you leave behind many who are shocked and saddened at a life lost too soon.  Breath easy now Rebecca. xxx

Wake up, it’s a beautiful morning.

I woke early today and the air felt crisp and clean. I could have stayed in bed for a while, after all it was only 6. 15 a.m. but why waste the day.  I am always well aware that our days change in the blink of an eye so I decided to “go for it” .  Donning my outerwear to keep me warm and my trusty buff, a very necessary part of my outdoor clothing when the air is cool ( I use it as a balaclava to cover my mouth from the cold air) slipping on my light weight but warm RAB  jacket to protect me from weather in case it turned colder and my trusty boots I was away.  

It was 6.45 by the time I left our apartment.  The world was just awakening and sleepy dog walkers passed me by with a weary “hello” , commuters that began work early were on their merry way in the few cars that whizzed by  me.  An ambulance screamed past with its lights flashing but no siren was necessary as the roads were pretty clear.  As I passed the post office in the village I could smell the fresh bread just out of the ovens as this post office is a bakery too.  I almost went in thinking a nice hot t cake straight from the warmth of the oven would be a lovely start to the  day but I restrained myself and continued  on my way. Down the hill I wove my way, how lovely that lungs that cannot cope with the slightest incline can actually embrace the downward sweep of a hill.  Past the village school, empty now as it was too early for the children but I knew in another two hours  it would be different again, bursting with children, running, shouting and screaming with joy as they played their merry games before the  school day  began and onto the path I travel many times between the river and the canal.  Sometimes this is on my scooter but today I knew it would  be a day I could do it on foot.  Oh happy days. 

The rain that had poured in the night had left many big deep puddles.  I had no choice but to splodge through many of them but my trusty boots could take the pace.  From time to time I walked around them onto the grass that was still white with an early morning frost, the crisp sound of my footsteps splintering the ice was lovely.   The river flowed and splashed merrily against rocks and the sound was very soothing.  Onwards through a thick blanket of crunchy fallen leaves, beginning their journey back to the earth, turning to mulch to help sustain new growth and on I went  until I reached the canal.  Oh my life felt good this morning,  

The world was  coming alive the more I walked,  I saw the builders in their high vis jackets beginning work on the mews houses being built overlooking the canal. Runners were passing me by at a fast pace, one that even were I well I could never have dealt with.  The ducks and mallards were embracing the day, preening their feathers.  I saw a pile of feathers at the side of the tow path that could only mean one thing, one bird had been taken for a meal.  Was it a fox or a mink, I will never know but life goes on.

As ever I gave thanks I am still alive to see these things, to smell the  fresh morning air to all my ph team.  I know without them I would long ago have been dust, gone, taken with ph. Also I am always thankful for my husband, who, when I wanted to give  in, when the pain became too much would make me pull my socks up,  always with the hope of a new day.  That was at the beginning of my journey, before I learnt just how much strength and stamina I had, before I decided to fight this ph.  

It took time, I won’t deny to get to  this stage.  After a year of doing nothing to begin to get back into the world and try to become a person again, not the blob in the chair.  It would have been so easy to just sit, let the people around me take care of me but I couldn’t do it.  I began slowly to build up stamina, you cannot do it in a day, you need patience.  Excercise CAN be done in a chair I learnt.  So over time my life has changed.  Like everyone I go through  periods where I can do very little, my husband takes over without asking, he knows I need help.  Then when I can do I DO!  Like today, I knew I could so I did it.  Tomorrow may be a different day, our future is not guaranteed.  

It did remind me of the day I went for lots of tests  when I was first diagnosed.  They did not make me do the walk test as I was bed bound but they did put me on the machine that tests how much air we can breath out.  I thought I did well and it was years later when reading something in my notes that I saw that they counted the test invalid  as I could not even blow enough to register, on the machine.   My stubborn streak helps.  I try not to give  in, to strive  to push myself.  If I leave this world tomorrow I know nobody can say I did not do my best, that is all anyone can ask of  their bodies, do your best for yourself and the people around you. We are all different with ph and I am aware some can do and some can’t do things, all anyone asks is that we try.  Tomorrow may well be a duvet day, how well we know we push ourselves one day and pay the price the next but it was so worth it.   My day was a true ginger biscuit day and I thoroughly enjoyed every minute of it.

PH and Pregnancy

I have just received my magazine from Sheffield, my pulmonary specialist unit.  One paragraph was so lovely to see for those with ph who are  wishing to have babies.  It states, and I quote - 
Staff at Sheffield have reduced the risk of pregnancy related deaths from 30 -50 per cent to about 10-20 percent,  Members of the team have been involved in developing international guidelines for managing PH in pregnancy.  

Just one more reason to be proud of my A Team at Sheffield, they break boundaries. 

Lyz Clements
Lyz returned from her visit to her transplant clinic and all is good.  Her lungs look great.  Her feet still are painful and she still has six weeks to go before she can drive so she is now  accepting visitors as she cannot go to them.  For obvious reasons your health needs to be good if you are considering visiting, colds and coughs are a no go zone for Lyz so take care.  I am hoping to go and  visit myself in the next few weeks, I can’t wait to see her, and this because a donor was thoughtful enough to put their name on the register.  Becoming a donor can  transform many lives. 

Keith Andacky - Denervation 

All went well with his denervation.  He has been told it may take months to notice any improvement and I second that but I know he is pleased to have had this done and now looks forward to a better life,  His lovely wife said  she has lots of jobs lined up for him when he does feel better LoL,  Hopefully easier walking when his pressures  drop. Go well Keith, onwards and upwards now. 

Waiting for it’s hat!

Our house is really coming along but we have  now come to a standstill as we await the steel that is needed for part of the roof that will form our covered terrace,  So most of the tiling us done but that part will be the brim of the hat, it will keep out the worst of the wind and rain over the terrace.  The waiting game begins again but hopefully not for too long. I know the windows are going in shortly and then the joiners can begin. 

We were invited out for a meal with our family for Mother’s Day and it was the first time I had seen the new house in a while.  Colin decided the site needed a tidy up and the contractor agreed so hopefully that job can be done whilst they await this final piece of the roof.  It has been difficult for the  builders as our plot is not  the biggest and what with their comfort cabins, scaffolding etc there has not been much room to store things enabling the site to stay tidier.  Also a lot of railings are up to keep the site safe taking up even more space on an already restricted  site. We are aware that this is a small cul de sac and we need to make sure we keep the place neat for the ones that live on it.  

Izzy

I am so cross that I never thought to take pictures of Izzy when we went out for Mother’s Day.  She looked a picture in a fabulous skirt and top, very pretty,  All three moms were given a drink of prosecco when we went to the restaurant but of course not Izzy.  She did leave with two bunches of daffodils tied with a silver bow from them restaurant so they will now be in her bedroom. Izzy is sleeping here this weekend and I am not sure how she is going to feel when one of her tasks is to pull apart all her Lego structures and re box them.  Very necessary as the whole apartment is being decorated ready for when we leave,  All pictures, memory box, ornaments are coming down ready for painting.  I see no point in rehanging them so they will be boxed up ready for our move.  

Thank goodness for all the masks I bought when the flue season was here.  When the paintwork is being sanded down it really gets to my lungs. It was driving me mad coughing until I remembered them and I am wearing one now as I type this,  Yes I may well resemble a rooster with its red valve and red straps but if it saves my lungs from being filled with the detritus of old paint I do not care.  

It is beginning to seem real at last, our  moving.  We have been and still are happy here but my dream to live next door to Izzy and to have my own  terrace is beginning to get more real with each passing  day.

Spring is in the air yet we are told to expect snow again this weekend.  We are surrounded here with crocuses covering en masse all the verges and parkland, how beautiful it all is,  Right now life is good, I intend to cherish every minute,  As you can see by my opening paragraph it can so easily be gone,  Make the most of your time, as the saying goes.......wake up and smell the roses.

Once again such a sad way to start my blog with but necessary I think to show how this young girls writing relates to us all.  

Take care and warm love to you all.  Please remember a comment, no matter how small means so much to me and,  I love them  all.

Love Carole xxxx

P.s.  as suspected today an almost duvet day but well worth it for my beautiful morning.