Tuesday, 15 January 2019


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

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

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

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

Christmas heartache for the family of Carol Byrne and Mike Binary

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

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

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

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

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

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

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

On to happier things

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

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

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

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

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

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

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

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

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

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

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

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

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

Our log pile

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

Oh the dratted tap

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

Why get so upset

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

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

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

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

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

Carole xxx

1 comment:

  1. Another lovely article Carole. I so enjoy them. Meant to read this with coffee and sun through the window this morning, but the day got away from me. Thank you for writing about us, and for us! Now the real reason I commented.....I MADE THE BLOG! I'll use it in my CV!