.This poor overworked heart.

Morning,  

Thursday began with a pretty bad event when I woke in the early hours of the morning feeling like I had a ton weight on my chest.  I also did not feel well and I felt sick.  There was nothing too specific other than that I could put my finger on but I felt I needed to see a doctor rather than let something brewing spiral out of control.  For sure I did not want to reach for the antibiotics as I try to take them just when absolutely necessary.  A phone call to the doctor and an appointment was made for later in the morning.

I decided that I would attempt to get a few bits and pieces we needed from our supermarket so off we went.  Big mistake as  each step I made I began to feel worse and worse until when we reached the till even the girl putting our purchases through noticed it.  With a great deal of concern she asked if I was ok.   I told her I would be but was going to sit down.  Before I knew it she had somebody else on the till whilst Colin bagged our things and came over to see me, she asked if I would like a drink of water which I gratefully accepted.  A slow and steady walk to the car hugging the handle of the trolley and then I was taken to the doctors whilst Colin went to unpack our goods as there were frozen items. amongst them.  I was too early for my appointment but we both decided it would still be best to take me, drop me off and him to return when things were all put away.


As I sat I began to feel worse and so asked for a sick bowl.  By the time Colin arrived my face was puce.    The doctor was very thorough and told me I had a sore throat and she suspected a gastric problem.  anyway away we went with meds, {not antibiotics thank goodness} but with strict instructions that if I got worse I must ring the surgery.  Get worse I did with a cough that threw up green gunk and my voice totally left me, {no bad thing the latter for Colin} but I decided to see how I went as I was sure I did not want the antibiotics.  My body is doing well fighting it and my chest no longer feels tight, though still a little green gunk but not so much as before.  The last thing I want/need right now is an illness that may impact on my denervation, though of course if I felt the need I would definitely ring my doctor before things worsened too much.   I do feel though that I am on the mend thank goodness. I hope my voice gets better before Saturday as our annual get together with friends is always lively with discussions.  

PAH association

May I just remind all my ph friends that this group is for people with ph and their carers as it clearly states in the paragraph on the website.  I mention this because of late I have had quite a few instances of people adding, or trying to add all their family and friends.  Now when you try to add it has to come via an admin site and then we need to send them messages, sometimes even four as they often go unanswered,  to ask of their condition. As these messages are rarely answered it then leaves us  with the task of writing yet another message to say that as we have had no response to all our messages we can only believe that this is not the group they perceived it to be so we are therefore deleting their request.   HOWEVER if indeed they do have ph and wish to join us then please feel free to request to join again. I even had a message back from one girl from a group with the same surname saying that she did not wish to join the group, she had been added by a family member who she does not even speak to.  Now I am saying this because if we add anyone connected to you all this group would be totally unmanageable and leave behind the very essence of the group.  Whilst all the messages are being sent out time and again the very ones who need our help can be pushed back when they needed our support NOW!

It may sound petty but that is the way the group was set up and so we must abide by all the rules.  Please, if you wish to add somebody think hard, are they your partner/carer and the answer then to their request will be yes, if however they are not really closely connected to your care we will have to sadly refuse their request.   I am asking you not to add people who are not involved in your care directly.

I hope you understand the need for this post and take it in a good manner.  I mean no harm I just do not wish this group to be diluted by adding members who have very little/if anything to do with ph.  Thank you.

Berlin

The callous action of yet again a likely extremist has once again left a country, no a world, lost in the depths of despair   The people out shopping all happy and looking forward to a festive season ahead were mown down with no thought at all for the pain this would leave behind to everyone.  The poor driver who was so brutally killed whilst they took his waggon  had only been talking to his wife minutes before they took his life.  Bodies strewn under the tyres and thrown all around, it is such an unbearable pain.  Will these acts ever stop, can we ever stop them, I fear not, I think we have gone too far in the wrong direction.  By interfering in the politics of a world that is so far behind us in culture we have brought this terrible disease upon us,  The politicians should be bowing their heads in shame.

What a mistake to make

When I am feeling well enough I make pastry, different kinds and freeze for later use.  I decided to take out some of this to make sausage rolls and mince pies.  I was very pleased when the sausage rolls came out of the oven, they looked so delicious I decided to try one.  Arghhhhhh I had used the sweet pastry I had made for the mince pies for the sausage rolls and the savoury for the mince pies.  Now it does not matter for the mince pies, they tasted just fine but the sausage rolls..................another matter entirely.  I kept them to one side and my sister called to visit me.  Seeing them she took one and popped it into her mouth.  I did not say a word and at first neither did she.  When she was leaving I asked her if she wanted to take some sausage rolls with her and she said no.  I confessed to mixing up the pastry and she said yes she could tell but did not want to offend me by telling me!  This is the first time I have done this and I hope it is my last.

3D plans

Received a phone call from our architect yesterday.  It was not an easy conversation as my voice is barely non existent so he only got one or two words I was speaking.  Colin was  up the ladder with a paint brush so he could not help.  Anyway the most important thing is that our plans have now been put into a 3d form and we can go down and look at them on Thursday.  I am so excited by this.  We have chopped and changed one or two things but I now believe we have everything the way we want it to be, busy times ahead now.

Santa

Colin has taken Izzy to Eureka today as Santa will be making a stop off to see some children, his elves will be busy in the museum too.  I was asked if I wished to join them but the thought of a pleasant day home alone appeals very much.  Izzy is here daily whilst the school holiday is on which is very lovely but a day off.............. without a doubt.

Home again after spending a very pleasant five hours in Eureka and seeing Santa.  One very happy little girl.  We are just awaiting her arrival today and will be going down to her house as her bed is being assembled today.....  oh happy days.

She has arrived here today wanting to go swimming!  Very nice but so many things to do today, we shall see.

Thank you

I would like to thank YOU, yes YOU.  If you are reading my blog you are supporting me as I can see how many people read it.  For the likes I receive thank you and for the comments a HUGE thank you too for taking the time out to do this for me.  You have been with me through 2016.  You have shared my good times, my bad times and 2017 is looming where I HOPE I get some ease to this ph after the denervation.  If this proves to be a good move for patients with pah it will eventually be offered to many people and I so hope it does.  Keep reading the blog as I will definitely take you with me on the journey through the op and also through  the tests to see if it has indeed helped to push back the pressures.  Who knows, it may be your turn next if you suffer from pah. It is so nice to see that there are so many people who are supporting me on this journey and also to the ones with ph sharing their journey too.  Lets us hope the cure comes soon.

I hope all the festivities ahead go well, no hospital stay overs for any of you.  Enjoy your family and friends, none of us know what is around the corner, hopefully wonderful things.

Tons of love to each and every one of you.

Carole xxx