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