How can they fail to respond!

Gosh how I just loved this post that was shared by Ashlee Hutchins .  Its made me smile whilst also making my heart break for what is happening here.  Read the words that are written under the illustration.  See how poignant they are and how true that it is what many of us would love to happen to us.  How could anyone not see the sense in this post.  This is one post that blew me away.  I shared it with one group but want it to reach others in the hope that it makes people more aware.

Give my sight to the man who has never seen a sunrise, a baby's face, or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. -- Robert N. Test

Anthony Nolan

Bone marrow:- It  brought it home to me that if you are so generous as to sign for organ donation  then why not sign  the Anthony Nolan one.  This is where you send a sample of your blood off to this trust and all details of this are kept on file.  It is worldwide.  If you match somebody who needs a bone marrow transplant you could be invited to donate your blood marrow.  Over 1.000.000 lives have been saved since this trust began back in 1974.  I remember well the parents of Anthony Nolan begging on the tv for people to be generous and see if their blood marrow matched that of their little boy.  Sadly no match was found and he died aged just eight.  Shirley, his mom, campaigned so hard to make his happen as she did not wish for another family to suffer the heartbreak her family did. 

In 2008 this trust set up the first dedicated cord blood bank.  This allows mothers to safely donate blood from their umbilical cord cord and placenta after they give birth, this is rich in stem cells and it is used for lifesaving transplants.  

Knowing how some people are needle phobic they have now achieved another goal.  By sending out "spit" kits it means that you do not even have to have blood taken if you don't wish to.  The kit is sent back and all details are stored in their files, what a great idea.  Just something to think about for those that like to think they can go some way to helping others.  

Sad really

When we lived in Spain and as my condition, though not diagnosed deteriorated I spent rather a lot of time researching my family tree.  nice and sedentary though the stress did get to me I must admit.  One thing was missing when I finished it was our family crest.  There are many family crests for just one name and it takes lots of research to find the one that really is yours.  In this regard my brother, sadly deceased, did the hard work and bought one for my mom and dad.  Framed and on the wall it was proudly looked at often by all of us, in particular as it said my grandfather 17 times removed was "a good friend to Charles 1st"  Quite why none of us asked to take a copy I just don't know but we didn't.  

After the death of my mom and before I was invited to the house, I did not have a key, this crest disappeared.  I asked a family member who knew who had it if I could just borrow it to take a copy.  Well how pathetic is it that this has not materialised.  All I wanted was a copy.  I took years researching the family tree and some of the family benefited by using my site to move on with their own research.  As I am trying to add photographs and places etc to the tree I feel it is sad that I am to be denied just a copy of what was not even theirs in the first place.  Pathetic really.  

Piano time

As Izzy has begun to learn to play the piano we were asked to provide her with one for home.  A rather expensive piece of kit  this, she should have taken up the triangle, three of us shared the cost.  With bated breath we awaited its arrival.  The stand was bought and ready, the seat in place and all that was missing was the keyboard.  It arrived and my did it look big!  All unpacked and placed on its stand and plugged in Colin began to test the keys.  He did learn piano as a teenager so has way more idea than I do about these things.  Though we did have a piano as a child my sister dropped some money down the keys so she destroyed the whole key board getting out her money!  That was the end of any hopes I might have had for learning to play the piano!

It was discovered that the last four keys on the key board did not play correctly so it has to go back.  What a huge disappointment, in particular as this was part of her birthday present too.  We are hoping it gets collected today and another is sent out to us quickly.  I know Izzy and her attention span.  She really needs this to push her on further. One hour lesson at school is not enough if she is really interested in mastering the art of piano. 

Well you could have told us.

In Leeds on Saturday with Izzy buying her a  new winter school coat we discussed the state of the new house, or lack of it with my son.  Though we were reliably informed that the build would take place at the end of this month or beginning of next we had no firm date.  Then Izzy piped up that they had "put some wood in".  On talking to my daughter it transpires that indeed yes, a start, albeit a small one has been made.  The site is all staked out now so we can see exactly where our house will sit on the land.  I was shocked as to how much of the land is taken up with the house, though we always knew it would but I really can't see" things in my head, I need to physically see them.  It is not a particularly big house rather the land is rather small.  Now I need to write a letter to all residents telling them where we are up to and giving our telephone number if there are any issues they wish for us to resolve whilst the building work is going on.    

Autumn

I love this time of the year.  The weather is crisp and I love the nights coming in earlier.  I can't cope with the heat since I got ph so it suits me right down to the ground.  We have already begun to get things booked into our calendars that really work the best in the autumn.  One of these is being a National Trust cooking on a camp fire where we will take Izzy.  This is being held at one of our favourite places,  Hardcastle Crags.  Two of our friends will also take their grandchildren and we should have so much fun.  It is no secret that we love open fires outside, the best place for them when it is chilly all around  and you get toasted as you sit close enough to stay warm but not too close you scorch.   Yes we have had many fires ourselves outside but as this is being held in such a wonderland and it will be lit up with fairy lights for the kids etc it should be a great evening out.   

Why Why Why !!!!!!!

I watched the news with horror today to see that though there is a government ban on children under 18 being allowed to be sold knives etc there are still many shops selling knives, cleavers, daggers etc. to just such people.  Whilst the news was saying this was happening in London it will be in many places.  When we look around at the heartbreak that is caused many times by children fighting, maiming and killing with these implements why are these shopkeepers doing it, and as if is known that they are being sold illegally what are they doing to the people selling them these weapons.  To be honest I think we are never going to get on top of all the hatred out there now.  Though I hoped for a safer place for Izzy to grow up in I fear this will not happen in my time for sure.  It seems to me the world has gone mad.  

It is a lovely day outside today, a day when we would have gone searching for conkers when we were young and when my children were young too.  Conkers have been banned now in schools and I don't mind that but I do recall all the pleasure we had with them when we were young.  Yes we might have had a banged knuckle or two when having conker fights but for sure there were no deaths that I recall or no stitches needed to stop guts spilling out when we "fought" our opponent.  Oh happy bygone days!!!

Flu

Am I scared about the flu heading our way from Australia, you can bet your bottom dollar I am.  I had flu once in my life and the memory is still strong in me today.  The experience was so dark and horrible and yes, scary even though I was a healthy girl in my twenties.  How much more worried am I now I am older and severely compromised.  I will definitely be using my antibacterial spray more than ever when leaving the house and asking those that come to our home to use it on our doorstep.  Do I think I am taking it too far, no I don't so please, anyone reading my blog take extra special care, remember a dose of flue can kill even the hardiest person.  My friend died from flu when he was 32 and a vey nice strapping lad he was.  Sadly he died over the Christmas period as his body just could not cope, his organs shut down one by one.  He left behind two young children.  There is no flu jab for this one at all and they are anticipating many deaths.  Just take extra special care please.    

All for now.  I need to go and see my butcher.  We are having friends for dinner on Friday and I need to order my meat.  We are cooking a Jamie Oliver main course, one that looks really nice.  Colin will deal with that whilst I shall be in charge of the starter and the dessert. I always look forward to seeing theses particular friends so I know we will have a lovely evening.  

Go well everyone.  Thank you once again for reading my blog.  Thank you for liking it or for any comments, these are so gratefully received!!!

Warm love  Carole xxx

We can't cut and run

Seeing a post a few days ago by somebody who is so fed up she has even contemplated suicide made me think of just how far we have come.  You wouldn't give in if you were in a race and we cannot either.  Most of use are doing way better than we ever expected since we have been on our meds.  For a lot of us our pressures have reduced and kept us here whilst waiting the cure.  We just can't give in to it.  Have your bad days, have your weepy days and duvet days ( I had a duvet day yesterday ) but then pick yourself up and do the best that you can.  Enjoy the good times.  See a doctor if you feel you might have depression but please, please never give in to ph.  Don't let it beat us.

Jane Jellyfish Davis

The funeral was held earlier this week for this amazing woman.  Sadly due to different circumstances most of us did not attend.  We were so fortunate then that Victoria Mayhew was able to go.  She had a brainwave of an idea and bought a card.  She then posted it on Facebook and asked if any of us would like to put something on this.  Once we had posted back to Victoria just what we wished to say she wrote it down for us and put our names with it.  She was then able to hand the card over at the funeral.  Such a beautiful thing to do.

It looked like her funeral was a really lovely one with a beautiful carriage to carry Jane in.  Many many balloons were released to fly away in memory of her.   I wonder what passers by thought was happening when they saw so many floating merrily across the sky. Fly high Jane.   Our thoughts are with the family.

YES at last a medicine dedicated for children!

How long have people been waiting for this medicine.  There has never been one just for children and I believe they had to take the ones for us, though in a lesser portion.  I am sure many parents will be so pleased.  This goes to prove that once again we are moving on with ph.  Once again the researchers keep working away for each and everyone of us.  Their goal is to cure but in the meantime to keep us as well as can be until that momentous day arrives.  I was so pleased to read this.

Since writing this it appears all is not how it appeared. It seems that the FDA have approved bosentan for children and not a dedicated one.  So sad about this but nonetheless another therapy to help.  

It breaks my heart when I see children carrying their backpacks to school with either their oxygen  or their pumps if on a hickman line.  Nevertheless these children just get on with it.  To them for many it is just the norm, the good days and the bad days.  I can't wait for the cure so that these children grow up in a world where ph means nothing to them.

How very bizarre

When we were in Scotland we bought two pirates for the memory cabinet that is on the wall in the study.  Now this display cabinet is rarely opened,  We open it if we have a new memory and occasionally we do allow Izzy to climb up on the step ladder and rummage around with the things.  A few days ago she asked us what had happened to the girl pirates arm and sword.  How aware are children as we had not noticed at all.  When we looked sure enough her arm had dropped off.  We assumed that it would be nestled on the base of another shelf but we looked and looked to no avail.  It has vanished.  Nobody else even really sees this cabinet of memories as it is in the study.  certainly we have not had anyone in the house who would even be bothered so where is it?  It remains a mystery but we decided, with the blessing of Izzy to take out the third pirate we got from her own memory box and replace it with the broken one, along with an explanation for future reference and we put the whole one  one in  our cabinet to sit proudly side by side with her mate.  If anyone has an explanation as to how an arm and a sword could just disappear from a closed display cabinet with a catch hard to open please do tell.  Until then it will remain a mystery.  

Just too much

Stress that is.  How many times are we told that we need to try not to stress out, stress can be a killer for us.  Some people I know do not give a fig and have caused a great deal of stress.  The person who began the whole thing who used to reckon she loved me showed her true colours.  Mind I really should have known as through all the months in total I have been in hospital they only ever bothered to come and visit once and that was at my local hospital whilst waiting to be transferred to Sheffield.  I suppose I should have taken it as a measure of how they felt about me then but I didn't.  Anyway through a silly thing that happened, a joke thing said about a recipe of all things she shut me off, taking with her my brother.  This caused endless stress though I tried to reconnect with them they have refused to meet with me halfway.  So the end of that as I decided to shut them out of my head and move on.  

I do wonder sometimes that as I am still alive they do not realise quite how poorly we are with ph.  Maybe they think I am partly cured!!!!  Until then we go along with all the pain, the lethargy, the sickness that comes with ph.  I will not give up the fight though,  I will just do what it takes to keep strong and stress free.  

Sign the form please!

This week is the one where we try our best to make people aware of how important it is for them to sign the organ donation forms.  Not only that but to tell your family as we know there are times when families in their understandable grief just won't allow this to happen despite the wish of their loved ones.  Remember one day it could be you or a family member that needs this gift of an organ.  Please be aware of this and take a loving step to sign the organ donation form if you have not done so.  The only cure for us with ph is organ donation and I have friends waiting for this gift of life and all the while organs that could have saved them are burnt or  buried.  Many illnesses mean organ donation is the only cure for them.  Please please sign the forms.  

So all for now, I have written this blog twice as I lost the first one!  We are going down to the land to try to tidy it up a bit as hedges have grown a lot recently.

Try to stay as well as can be.  Again thank you so much for clicking the like button on my blog and I absolutely love a comment or two.  

Warm love to you all

Carole xxx

What a cold does to us

Just too many deaths

These last few days have been very painful.  First we heard of the death of a friend (not ph related) at the age of just 60.  Though I am not sure of all the details it appears to be something to do with his heart.  His wife is asking for donations for a defibrillator so maybe if there had been one close to hand he could have been saved.  Sadly due to lack of oxygen his family were told that there was nothing that could be done, though they got his heart beating again he was brain dead.  He died peacefully a few days later.  Today is the day of his funeral so I will go and pay my respects.  So sad for a family to lose a loved one so suddenly.  One day he went to work and he never returned home.  

The next death was our own Jane Jellyfish Davis who fought hard her battle with ph and other illnesses.  Sadly he kidneys could not take the strain any more and I believe this was the cause of her death.  She had been in and out of hospital so many times and kept fighting back with a great spirt.  She will be remembered as well for her jams and chutneys of which she made  many.  Rest easy now Jane, you will be missed by so many of us.

The third death was yesterday (Wednesday) and it was the expected, though sad death of my godmother.  She died in Whitby surrounded by her family who told me her death was a peaceful one.  I am so thankful that I had managed to see her just two weeks ago, I knew the end could not be far off even then.  Her biggest fear was that she would end up in a nursing home and I am so thankful that she did not, just one night in her local hospital.  There will be a small funeral for her in Whitby and then a small memorial for her back here where her ashes will be laid to rest along side her beloved Ken, my godfather.  

The is the end of an era for us as a family and we will never return to Whitby without carrying them in our hearts.

Leeds girls day out

No not a rowdy set of girls “doing the bars” but a day out for just Izzy and I.  Grandma and granddaughter time together.  Though I was very nervous about how I would cope it actually turned out really well.  We went in on the train and Izzy loved it.  She told me it had been a while since we had been on a train so it was still a “fun” thing to do for her.  Our goal was to go to the Trinity Center and buy her she new lego ready for her holiday with grandad in York.  There is always something going on in this center and this day was no different.  This time there was a slide, not any slide but one that was enclosed and twisty.  At the top was a wind tunnel where there were lots of leaflets blowing around.  the object was for Izzy to catch one ad then she was to be allowed down the slide.  At the bottom was a lovely setting, it was as if she was on a beach with deckchairs and swimming things all around. They were promoting a new French Restaurant.  

As it was too early for lunch we did what we had set out to do, chose new lego, went to TK Max where she eyed up two dolls so much that of course I fell soft and bought them for her.  We both tried on boots and trainers, though left without any.  I must confess to laying down on the enormous seats they have for the customers to try their shoes on.  Nobody was about and my body was telling me I just needed to do this.  After a short rest we decided it was time for a real rest in the shape of going  to lunch.

This French place that had been promoted at the Trinity Center was really lovely.  I was presented with a glass of bubbly and we were seated where  we could watch the world go by .  Izzy was given a drink and we were also presented with some gorgeous garlic bread which we both ravenously tucked into.  This was all for free as it was part of the promotion for their new place.  I then decided to order from the menu and we both enjoyed our main courses, though as Izzy has four loose teeth it was not easy for her to eat chicken without the fear of losing one of her teeth.  Fortunately she did not.  After a gorgeous dessert and such a long rest we both decided we needed to head for home.  A smooth journey back and a taxi to our house and I flopped onto the bed.  I was absolutely shattered but she was happy to lay by the side of me and play with her new dolls.  We both agreed grandma and grandaughter days should be on the cards more often.

Right now she is away in York with her granddad. My friend Lucy is here with me so I certainly do not have time to get bored.  I did go to York with them and spent a few hours before catching a train back home.  We went to the Jorvik Center and I was surprised at the questions she asked the archeologist about the dig and the things they had found.  The shrinking violet has gone to be replaced by a very confident little girl who is quite happy to step forward and discuss things of interest.  She loves skeletons in particular and took a great deal of interest in examining the bones to look for signs of arthritis etc  One of the bodies had an extra tooth so she was amazed by this!

Onward to Barley Hall a reconstructed medieval townhouse.  This was originally built around 1360 by the monks of Nostell Priory.  Once again she was blown over by the history of the place and we must have spent over two hours in the few rooms there are.  In the end she was so reluctant to leave but I had to go for my train so I left her there with grandad.  As she was so interested in history and digs etc it was decided she would go on an archeological dig in York too.  Of course this was designed so that he children did “find” things” but I think this is a wonderful idea as it piques their interest even more.  It would not surprise me at all if this child later in life goes on to do something in the world of archaeology as she has shown over the years a great love of finding out and wanting to learn more about our past.  or maybe she could become an historian, time will tell.  

York Maze

A day was spent in the York Maze.  Izzy loves this place and for those of you with children, or indeed without this place is amazing {excuse the pun}   From the house of confusion to the pig races and the maze itself, soon to be removed to begin new growth for next years maze there is so much to do.  This is such a fun day out for the whole family.  The maze easily copes with wheelchairs and mobility scooters too so nobody needs to feel they will be excluded.  The Maze is only open from July to September when the crop is harvested so please check with their website if planning a trip. 

It is  just a cold!!!!!........ or not.

It was nothing more than that, I had a simple cold but in the world of ph it means so very much more.  It means legs that shake so bad they feel there is not enough strength to hold you up,  it means the wheeze in our chest that makes us wonder if it is going to “settle” and give us an infection.  It means keeping a careful eye on it ready to take the antibiotics if it does take a turn for the worst, though hoping they are not needed.  So a simple cold to many is nothing more than that.  to us it could end up with a stay in the hospital.  I have been admitted numerous times with a cold that turned bad.  I felt this was “just a cold” and I believed I was on the mend.  The tissue mountain became less daily, the vic was not being used as much and I could now risk clean sheets that would not be covered in the smelly stuff. 

Well I was so wrong on that score for sure.  The cold that I felt was disappearing came back with a vengeance and slammed me with such a wheeze, not able to breath properly and a feeling of such constraint in my chest.  I rang the doctor who asked me to go in for them to listen to my chest.  thank goodness I did.  I saw Dr Davis who is the doctor who knows my ph specialist personally.  He listened to my chest and stepped back in horror.  He said my lungs were really bad so antibiotics it is once again.  He also took a blood test to check for pneumonia, though I am sure I do not have that.  The speed of which a simple cold turns bad is alarming.  I shall be resting for the next couple of days.   

Time out

Thank you for all the lovely comments on my post when I said I would be returning to Facebook after taking time out for a couple of weeks to share in taking care of  Izzy who was spending her days with us.  It felt so good to spend time doing crafts and things with her without checking  the computer to see if there were new ones who wanted to join the Pulmonary Arterial Hypertension Support Site.  It was time well spent as I have returned feeling much better and more refreshed.  Whilst social media has a very definite place in our world today I do believe that time spent away from it can also be very beneficial.  I know quite a few people who have posted in the past that they are just taking time away from the computer.  I can't believe it does any harm at all.  It certainly worked for me and I feel so much more focused. 

The wanderers return

Colin and Izzy arrived home yesterday.  We are still clearing away all the things they both brought back from their trip to York.  This apartment is too small for all of this, roll on the new house.  Izzy was full of all she had seen and done in York and is looking forward to her next trip.  Her grandad is looking forward to a rest!  I am sorting out things to take to our local charity shop so a trip there will be needed today.  Other than that nothing is on the cards for me but to rest.  

So this is a boring blog really but at least you know I am still around

Much love to you all and thank you so much for taking the time to read.

Carole xxxx