Tuesday, 15 January 2019

MAKE THIS THE YEAR WE GIVE BACK

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




























Thursday, 20 December 2018

I JUST WANT FERRITIN

I have been told for over five months now that my ferritin was low but the specialist was puzzled as I was not anaemic.  I explained to him that it was common for those of us with ph and that I would be fine after I had a ferrijnect infusion.  He was still puzzled and for sure it is hard for him to understand.  Iron deficiency without anaemia is a clinical challenge according to "Dr Google". Instead he has said I need to see a gastroenterologist, even though my ph team agree I do not.  So here I am still waiting to see said person and now my blood tests show I am also anaemic as the time has gone on without said infusion.  

We know full well how low ferritin makes us feel. More heart palpitations, more weariness, dizziness, leg pain, irritability and shortness of breath - like we are not short of breath enough to begin with! headaches. feeling sick, oh the list goes on.  So here I am longing for my infusion just so I can get my "get up and go back " which has got up and gone !!   I was told three weeks ago that I have been moved to the urgent list so hopefully this dilemma can soon be sorted and I can get back my zest for living.

Death of Joanne Witcomb

So sad to read of yet another ph death.  Joanne was a very private person so we do not know much about her life  but we do know she had a loving husband called Robert, she was 44 years of age and she also had two sons.

Joanne waited for her transplant with hope in her heart.  Sadly,  though the transplant was carried out at the end of November Joanne did not wake up from it and died a few days later.  We know the complexities of transplant is not a "cure me" fix but a life changing operation, sometimes for the better and sometimes not.

My heart goes out to all of those grieving for Joanne and the ph team that did their very best for her and her donor and family who freely gave in the hope of letting somebody live a longer life.  Sadly it was not to be but thy all gave of their best for Joanne.  R.I.P. Joanne.  I am so sorry I do not have a picture of her but I know you will all join with me in thinking about her and the sad outcome.  

www.phocusonlifestyle.org

Here we go again.  How fortunate we are to have so much detail, so much help online for all aspects of coping with ph.  The above is a new online resource designed to help with all aspects of living with ph.  The research and care behind it to offer all of us here in the UK has been immense.  Once again I take my hat off to all those dealing with this new focus group.  Enjoy.

Interesting and pleasing to see that if you now ask Alexa what pulmonary arterial hypertension means she will tell you.  She tells of how it is the high blood pressure in our lungs.  Technology, yeah, another way to raise awareness for us.  

It was the LIE that was offensive

A couple of weeks ago my hubby had an appointment for a follow up at our local hospital.  As usual we arrived way too early, not for us the cavalier attitude of "they will wait for us" we sometimes see.  Always aware of how fortunate we are to receive such care we have always had the policy better to be early.  After checking in he was sent next door as is the norm for an x ray.  30 minutes later it was his turn to get changed into the gown for said x ray to take place.  I went back to the cliic to await his return and join him when he saw the specialist. After another half an hour and no sign of him returning for his appointment the receptionist and I were slightly worried. Others going for x rays later had returned and his appointment time came and went.  The receptionist from the orthopaedic clinic rang x ray to find out where he was only to be met with a derisory comment that he had only turned up two minutes ago!!!!    We were both aghast as she herself had clocked him in and I had sat with him in x ray and waited with him until he went into the cubicle.   So we both acknowledged that there was a lie going on here.

Hot foot me next door to x ray just in time to see him come out from his cubicle and scurry next door for his appointment.  He said there had been a problem with the patient before him for that particular x ray side which happens.  We had no issue with this but I went to see the receptionist to ask her why she had lied.  Why had she implied that he had only been in the department for two minutes which meant he had in fact turned up very late. Well to say she was an arrogant pompous soul would be correct.  Cold and distant she scurried off to see the x ray technicians.  I followed her down to reassure them that my beef was not with them at all but her.  It was the lie that offended me.  Anyway fast forward to the following day when I returned to take the matter further.  

It turned out that the receptionist was an agency one who had total lack of empathy with patients and it had already been decided that she would not be invited to return to the hospital for that reason.  It is not like me to kick up a fuss in hospital, indeed I kept if very low key, no raised voices and an interview room was made available so the I could voice my concerns away from the other patients.  I explained that we were so upset because by her lie it appeared we could not care less for the service we receive in the hospital.  that we put ourselves above all the staff and specialists that take care of us when in fact the very opposite is true.  We are proud of the care we receive and we know we are blessed.  It just takes one rotton apple to make it seem it is not working  Fortunately all times were logged, arrival, move over to x ray etc so it could be seen that the lie was there, that we had not been cavalier with our attitude. 

The head of the department said their goal was that anyone who entered their department felt welcome  This woman was NOT welcoming to anyone, not just us as previous complaints had been made.  When we attend hospital it is because there is something wrong with our health.  We do no need to be looked down on and lied about  This is the first time we have EVER encountered anything other than the best care ( except for when the A & E could have killed me four times over if we had not refused their treatment) - they do not understand ph.  I hope that she learns a lesson so that wherever she goes after this appointment she is kind to the patients.  

I thought I knew

I bought a beautiful linen tablecloth and napkins a while ago as our table is now a different shape to the previous one.  I carefully stowed these items away in our linen room thinking I would know just where they were.  I have shelves for flat sheets, shelves for pillow cases, towels, duvet covers in abundance etc.  I have drawers containing other items that I use frequently and drawers in here with old photographs, we all have so many do we not. I just KNEW how well this room would work.  Guests could just walk in and see at a glance clean towels and sheets etc and help themselves.   So why did it break down when I - the organiser - wanted this table cloth.  I searched and searched, though everything was clearly in view and neat and tidy.  In the end I gave up and went out and bought another one.  On Monday I needed a frame for a picture and this room also houses the drawers containing all of these.  In the last drawer there were my long lost items.  I must have stuffed them in on moving day and forgot about them.  So  I was not as clever as  believed at my organisational skills.  

It is THAT time of the year again

Most of you will enjoy a day with family members surrounded by love and laughter.  Memories will will bandied around, do you remember when, who, how etc.  I know I do this every year but once again I ask you to think of those that will be missing a special somebody at their table.  Not always lost to ph though we do concentrate on them here but those that died and donated organs etc.  or lost to other illnesses, For those it is a bitter sweet time as the table is incomplete.  The smile or hugs from the one missing is so sad.  So please take a little time out to share a thought for those in such a position.  

Living a life with PH Blog

Below is a copy of an article that appeared in the Winter 2018 Emphasis Magazine, some UK readers will have already read it but posting again for newbies and overseas PH friends alike.

































All change

Though we loved our sofas we had at our old place it became obvious that this furniture did NOT work in this house, wrong colour, wrong texture, wrong shape.  So we made the plunge and bought new ones  and they will be delivered on Sunday.  I cant wait as I believe it will turn our lounge into a really cosy living space.  We went out last week and bought two tables for the sides of the sofas and now I am heading out to buy throws and more cushions.  I hope we made the correct choice of colour.   - will post a pic next blog so you can tell me.  I went against one persons thoughts and for another so we will see.  It took some convincing to get Colin to agree so I just hope I got it right or it will be an expensive mistake to make.  

Up until last week nobody had used our upstairs shower room so Colin decided he needed to try it out. Good job as water came out of the shower and onto the floor. So once again our wonderful (NOT) tilers let us down. Colin can sort it fortunately as we never want them in our home again. Yesterday saw us going out to buy silicone of the correct colour and grouting to right their mess. I am thankful though that this be be rectified before we have company staying over as a flooded bathroom is not the first impression I want them to take away with them. 

Izzy

Weather being for us it would appear that Pen y Ghent, the mountain Izzy will next  climb with her granddad will be on Saturday. Clearly as an experienced leader all must be in place to make sure of safety, weather, times of darkness, correct clothing and as always a first aid kit holding enough stuff to mount Everest!.  As Colin himself said he is taking precious cargo with him this time, Izzy.  

She is very excited and keeping her eye on the weather.  Failing this Saturday we hope there will be an opportunity before she heads back to school in the new year.  If she gets this one under her belt then she has been promised Snowdon in the Spring, her goal!  So I am hoping the weather is kind and that this climb happens for them both.

So as this year comes to an end I know I owe such a great deal of thanks to my A Team, each and every one of them for their devotion to us all and their amazing care all round.  I am also thankful we have ph forums where we can go and talk to somebody who really knows what we are talking about, that GETS us.  We have an amazing organisation called PHA UK here in the UK and they have once again organised for us a conference in the Spring, a chance to meet old and new friends.  I have been blessed so much by so many and I thank you all for being my friend, whether ph or otherwise.  I hope that 2019 brigs us ever closer to the cure and that we do not lose any more to this cruel disease.  

Warm love to each and every one of you  Take care, have a great time and speak in 2019!!!!

Carole xxx

Wednesday, 5 December 2018

RIP SALLY -- THANK YOU

To be honest this was going to be my penultimate blog.  I felt there was little to say, it has all be said so I was going to leave at the end of the year, Not the ph community but just the blogging.  However I would lose many of my friends who read my blogs, sometimes upwards of 2500, sometimes  less.
So I have decided to continue as long as people are willing to read them. Bless you all for the comments you write, it does keep me motivated to continue.  

Sad death of Sally Kinney Maddox

Sally lost her fight and sadly died just a few days ago at the beginning of December. For  those that knew her, either in real life or as a supporter for people with her disease it came as a huge shock.  Many people were writing of their devastation to lose such a strong lady who had served her time as a ph patient trying hard to bring awareness.  This was a huge blow to the PH Community as a whole, as indeed the loss of any one of our ph friends.  Sally died in Atlanta aged 49, way too young. She was one of the PHA's Periwinkle Pioneers, a select group of individuals responsible for advancing care for individuals with PH and helping to change the history of this disease.

Thank you Sally for what you did for ph.  You served our community well.  Rest in peace.

Distressing post

On our ph facebook page, only seen by members and their carers so we can talk about our disease, emotions etc away from our loved ones we saw an awful post.  This was a lady who lived outside of the UK who feels so very distressed of how the medications make her feel, the constant cost of trying to get them through insurance and her ph is getting worse.  She wrote that she has done with ph.  Her meds are in the bin.  She has told her family who are distressed about it but she just wants it to end.

We know too well how awful the meds make us feel.  We know how we are treated like we are making up how bad we feel as we look amazingly well.  I for sure have stopped saying how I really feel, my answer is a simple one of "oh you know up and down days" and leave it at that.  Family and friends are not really interested in listening, and why should they be.  We would have told them of our struggles in every day living at the beginning and have learnt to get on.  I have begged some of them to do the straw test.  Pinch your nose and breath just through a straw in your mouth, climbing stairs etc. Doubt any one of them has even tried it yet this is OUR LIFE. I ask them to try to think that this is my FOREVER though my body has learnt how to cope with it.  There is no getting better from ph as there is with some cancers or some strokes.  Just different ways of getting on with coping with it.

Of course the messages were quickly put out to her to our ph friend to please think again.  Think about your family who will miss you.  One post even told her to think about how hard the end is with ph, being slowly suffocated by you own lungs.  I begged her to keep going, to stay strong cos I still believe we cannot be long away from a cure.  This was all to no avail and I worry about how she is now.

We are fortunate here in the UK to not have worry about the cost of our drugs.  We pay our percentage of wages right from day one of our first pay packet.  This all goes into a pot and means that health care is paid for for all, no matter how much money we have.  I know people from abroad think we do not pay but really it is like paying into an insurance policy as lots of countries do. They take out a policy and  pay monthly and you are covered. We pay monthly and are covered and we have no chance of avoiding it.  It is a separate tax we pay.  So for us here in the UK we have already paid our insurance premiums and are assured of our medicines.

There is nothing we can do for the lady who has had enough.  Sometimes at the beginning I felt this way too but just battled on and now I am in a fairly stable place.  Though I know my condition can change in an instant my goal is to remain strong, with maybe a wobble now and again!  I hope thee said lady changed her mind, fished her meds out of the garbage and can find herself in a stronger place.

And relax

Well for me anyway.  We have been busy making the house our home, putting up pictures and mirrors in the correct places etc.  Now at last when the day is over, the daylight growing dimmer we can have some time to just rest.  We take ourselves off to the lounge and sit down amid our squishy cushions with a drink in hand and enjoy the views from our huge window and look out on the world beyond.  We can we watch the sunset and the colour streaked sky and marvel at nature. A pair of binoculars always rests beside our couch and is used by many that visit here.  Our views are spectacular, even on bad days there is always something to see.  So are we there yet, are we settled.  The answer is mostly, the garden is the next thing to tackle.  I  myself am busy trying to find the correct furniture for outside on our closed terrace.  I have also promised Izzy as her bedroom is really big to make her a seating area with a small table and two chairs.

Last weekend she had her first sleepover and it went well but she said she wished she had the table so they could take a jug of juice up and lots of fruit in a bowl so that it was like their own house!  I have promised to deal with this and it will make a nice addition to her room.

The sleepover was fun.  The girls were darting about here there and everywhere as they played hide and seek, clearly Izzy had the advantage as she knew all the nooks and crannies to hide.  Both girls made us cards from all the things in Izzys' craft drawers.  The little girl that stayed said how she had enjoyed herself and thanked Colin for the "porige"  - her spelling - and that she loved it!  No mention of my spaghetti or my delicious apple crumble she ate with relish!   She loved all the fruit that Colin piles on top of porridge, kiwi, grated apple, blueberries and sweet cherries etc.  Oh well.  So will we do this again, of course we will.  The house was alive but once it was over we did appreciate the peace too.  

Celebrating 20 years of marriage 

Considering we were engaged three weeks after we met and married at four months after we met I think we have done well.  We are surviving coping with this terrible disease.  Our dream of living in Spain ended with a bang when I was diagnosed so that dream sadly left us and we sold up 12 months after diagnosis when we felt we were unable to use our villa as we had intended.  We have survived yet another house build and the move into it, a very very stressful time.  Still always a positive, we lived a lovely life in Javea and made lots of lovely friends, we DID it, we lived our dream.  We have survived the loss of most of our family and some friends who really cannot comprehend how poorly I really am and just cannot be bothered or forget to invite us to gatherings.   Through all of this we are standing tall  and proud.  I do all I can to trial for new meds, take on any study etc.  Both of us are determined to be on call to help in any way our ph community.  So this anniversary I did not think I would see came and went yesterday.  I hope we have many more still in the pot to come.  Colin is my strength, my rock, I am blessed. 

We did not make a song and dance about our anniversary, instead we took ourselves off to a lovely restaurant at lunch time when I am generally feeling my best and enjoyed a nice meal.  Later in the evening I had a small glass of bubbly and just relaxed and we talked about our earlier years of marriage. Would we do it all again knowing the problems that came along the way - in a heart beat. My life and the lives of our children changed a great deal for the better when I married Colin and he has proven to be the kingpin of this family, long may it last.  

Izzy has just been telling us how much she loves us all and who comes first on this list.. Happy to see an obvious  Mommy first, then an equally obvious granddad and joy of joys I come equal to Chris who is, I am happy to say and amazing dad to Izzy.  She said she has begun sometimes to call him dad and I am so pleased.  He certainly deserves the title as he is really lovely with her and has watched he grow over the last five years.  

This made me cry - And didn't they all look well

Click on the link below - Please keep the video on when you have seen and heard the song and children as you will then see another video about ph. Be aware, you just may have it without knowing..... yet.  We must bring awareness of this terrible disease.

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZIy4v34uvjA%26feature%3Dshare%26fbclid%3DIwAR0eK9pefpJ9950ZRqiFIUBv2Jh_Dp-7VK-kCNkVs5VXJfhX30ZBToxfS2g&h=AT1ucX8TbD5f4j2C6AmVmgUEA0LAhVLzTL6cCcmD-ZsGzlKZ94CpPKdzQjtTUS89C0EsinJ4hVVxRTyWqupXt7q8UhXd57gDuOJDk7hqS7HI2ERCFwFdhzBDF0U

I am finishing with this post that came on my news feed.   This is just one of the reasons we were asked to get our MP's to go to a meeting in Parliament to help to bring awareness of PH.  This touches people more than showing us oldies suffering. How terribly sad a note to finish on. So IF you are not yet on an organ donor register then please pease do this NOW.  just a click is all it takes.
Remember this could touch any one of you.  Please please always be aware of this cruel disease.  If you see posts asking for help then try to be there.  If you see people struggling to live with it then lend a hand.  Remember their disease is invisible so try not to dismiss them because you cannot see a broken leg, loss of hair from chemo etc. We matter too and these children on the video never had a chance to live.  

So once again warm love to all.  Your comments or likes as ever are appreciated more than you will ever know.  

Carole xxx


Wednesday, 21 November 2018

THE CAR THAT INSTIGATED A ROMANCE

Andy Sweeney Lyndsey Childs. Love story with ph.

Those of us with ph know of the devastation on hearing the words.  Many of us will have questioned  our partners, husband or wives, can they stay the course?  - cos it sure gets tough.  If we are not in a relationship then will we ever find somebody to take on a partner with a chronic illness, one that is said to be life shortening.  I know there were many times when I told my own husband to cut and run when the going got really bad.  Fortunately for me he chose to stay but I read many posts from others whose partners just could not deal with it - they ran!!!  At the time when we really need a strong partner to be told they are off must be so awful, too much to contemplate.

Two such singleton people diagnosed with ipah were Andy Sweeney and Lynsey Childs.  Both single and both were given the verdict ipah.  Their lives in tatters they both envisaged a lonely road ahead as  they wondered what would be the point in being with somebody when living with the illness they had an uncertain future.  Battling on with the disease alone was the way their life was headed.  However a picture posted on one of the facebook ph sites changed all of that.

It was just an ordinary picture, one many of us post when we change our cars but this picture was about to rock the world of both of them without a doubt.  Andy was the one who posted the pic and Lynsey was one of the many who commented on his new mobility car.  

Before long they began to message each other asking when they were diagnosed, how did they know there was something wrong and the meds they were on etc.  The messages flowed back and forth, Talk continued about their families, friends etc.  As neither of them were in a relationship  the online friendship grew.  After a few weeks of talking and face timing they both began to look forward to their chats.  Lynsey had a bright idea.  She suggested Andy take his beautiful new car on a run, a long run as the distance between them was not inconsiderable, being 150 miles so they could meet up in person.  Andy was up for it so he drove to meet her and straight away Andy said he knew something was there between them and that the same something continued to grow.  They now drive backwards and forwards to each others houses and are planning on more lovely things, like nice weekends away and so forth.  The friendship turned to love and because they both know all the problems of living with ipah they both have an understanding that those not living with it or caring for somebody with it cannot ever really have.

In his own words Andy states that "yes, we both have ph but we also now have a life, a happy life and ph lives with us but it won't stop us being together.  In many ways ph found US"

I was more than thrilled to read this story as being a member of quite a few ph forums I have seen the sadness created when somebody is diagnosed.  Families that split and fall apart under the weight, friends that disappear once they learn the truth of how it changes our lives and families that think the poorly one is not fit to be invited out for meals etc so they stay home alone whilst the rest continue with their happy family life.  Yes  I have seen so much heartache on here so this story with the happy ending has cheered me up no end.  I also hope it serves to say to people that yes, you can find love with ph. Maybe take a look around your clinic at your next ph visit, your future just might be sat right next to you!

Go well Andy and Lynsey, may your life be filled with love and happiness.  I feel sure you will weather the storms thrown up by living with this disease.

Good on you Kevin.

I told you last time of the campaign now going on for making our politicians aware of ph and trying to get a little more help for us out there.  Well the upshot is that with the help of my councillor there are now two people attending on my behalf.  I received an e mail back today from Kevin Hollirake MP telling me he is definitely going to be in attendance at the PH event which will hopefully help to raise awareness of this disease and he sent me his best wishes.

At last we will have our MP's listening and learning of this disease, pushed under carpets for way too many years.  I thank our PH team for setting this up and hope that lots of good cones from it.  Sadly the other four that were invited have not bothered to respond to I must assume they are not going to go.  I pray for a big turnout.  Lots of work must have gone on behind the scenes for this to be put into place.  I thank them all from the bottom of my enlarged heart.

Cruising

We did it.  We once again looked ahead and decided that we would fight ph and it would no stop us from enjoying holidays.  So we have booked another cruise next year for us and Izzy.  I am praying my ph holds up but we are taking out our insurance NOW because we all know well how it can change in an instant. On my last cruise, though I loved  it very much I was always in bed by 7.00.  I hope to see some of the shows next July and watch Izzy as her face lights up with delight.  I had the denervation since my last one so maybe I will.  

Delightful Liverpool

Izzy came around here last night with her piano bag to ask her granddad to help her with her homework!  Yes she can do this now because on Saturday to get a days respite from all the jobs that still need doing I suggested a day out in Liverpool at the music shop we like to buy him a new Keyboard.  I knew it would be the one thing to get him away from the house and I was right.  So a beautiful new Keyboard now sits in the study.  Izzy was delighted to see it and is looking forward to them both sitting at it playing pieces side by side.

The problem with Liverpool is that it is such an amazing place it appears to ALWAYS be crowded.  No matter what time of the year the shops are bursting at the seams.  Groups of people were gathered around the Cavern, as always.  Some were dressed up to resemble Cilla Black and also a few to look like the Beatles.  The Cavern is such an iconic place and one can always see some dressed as their idols who became famous after playing here. 

I went into Zara and I found a really fabulous dress for myself, really loved the style, colour and  length etc.  I looked at the queues to try on and they were almost out of the door.  Now I am not sure how those of you with pah are but though I can walk, standing still is a no no for me.  My oxygen levels plummet into my boots, my head hurts like crazy and I also get dizzy and feel sick.  I decided against trying it on and just going to pay for it.  We have a Zara in Leeds so I knew it could easily be returned.  Alas the queue even surpassed that of the one to try clothes on so I had to leave it.  I am hopeful, though not in a big way that I will see it on Friday when I am in Leeds and it turns out to be a nice little winter number for me.  

Thought I would finish with this cartoon I saw online today, sorry not sure where it first came from.  Very tongue in cheek, particularly as my hubby took on all the jobs in our home when I first was diagnosed.  Still it made me smile!!

The weather has turned from mild to cold so stay warm and dry.  After saying that I got absolutely wet through yesterday going to my dentist.  I then was diagnosed with thrush in my mouth cos of the inhalers and to cap it all off had to sit in my wet clothes for two hours before I returned home.  Though our house is toasty I took a hot water bottle to bed for a short time to warm my feet which had not recovered from sloshing around in wet shoes and socks.  

Right, headed downstairs now to take my chewable vitamin c.  I also made sure Izzy had her hand cleanser that wards off bugs for two hours.  I always remind her when she has rubbed her hands with some she should rub the bottom of her nostrils in the hope it stops the pesky germs from entering!  Not sure if it works but I try anything to protect myself from them anyway.  

Stay well everyone.  I send you all warm love and the hope that you stay as well as you can.  

Carole xxx





Sunday, 11 November 2018

SAD DEATH OF FIRST DENERVATION PATIENT FROM UK

Barbara Cherry R,I.P.

Sadly we recently heard of the death at the hospital of the first patient in the U.K. who had denervation for her pah.  Barbara Cherry just wanted to change the world of PH - wanted to put her body forward to trial this.  She said she wanted to do it for the sake of all the young ones suffering PAH. After the denervation she had a new lease of life for a while. Sadly her PH was advanced and she lost the phight over two years after this procedure. PAH owes her a debt to be the first to agree to this pioneer treatment. Barbara will not be forgotten in our world.

I remember speaking to her a few months after her denervation and she said that at last she could walk up the hill to meet her friends in the coffee bar without feeling her lungs were about to explode. It was after talking to her that I made the decision I wanted to try this procedure and was able to talk to my team that same day and ask to be put forward  for it.  I have never regretted it and my life has been easier because of it.  All of this I of course owe to the team that made it possible but also to Barbara for her words of encouragement.  Had she not been so positive about the whole experience I may well have not asked to move on with it.  My heart goes out to her husband and family now as they will be grieving for their loved one.

PH and MP’s

We have been asked if we can get our MP’s to attend a PH Awareness talk at Porticullis House, London with goals in mind.  These goals are:-

Reduce time to diagnosis

Improve quality of life

Ensure equity of access to treatment

Reduce financial hardship

Raise the profile of PH in Parliament

Get MPs to ask parliamentary questions to ministers about disease management

My MP is on maternity leave so I talked to my local Conservative Councillior Mike Payne.  Boy has he come up trumps.  Though of course as a councillor he cannot speak for me in London he has asked 6 MP’s to see if they can /will attend.  Immediately Andrea Jenkins came back to say the date was entered into her diary with the hope of attending,  The other five acknowledged the e mail and reasons behind it, we are just waiting to see if any of them will be in attendance.  PH needs to have its voice heard and I hope this talk and photocall helps with this, we deserve it.

Focus Group for PH

Colin and I, along with others with ph have been asked if we can attend a focus group session on Thursday 29th November.  We are to be joined with representatives of Hallamshire Hospital asking us questions  designed to gather our thoughts on the concept of a particular model of care, which will be introduced to us at the beginning of the session, so I have no idea yet of what it will be about.  The session will be filmed and recorded to allow then to look back on the discussions the the recordings will not be made public. Should be interesting and we look forward to this.

Threw out our unwelcome visitor

This was one of our first visitors to our new house.  He/she appeared very shortly after our move but when I saw it there was no way to capture the blighter as he was about 14 feet high in the void in our bedroom. This void is over our bed so it was interesting to see him run backwards and forwards across the ceiling he seemed to like it up there as I saw him often,  fortunately I am rather fond of spiders, the bigger the better so I was not unhappy about him but Izzy was. I kept on changing the colour of the lighting in the void hoping it would make him scurry down but no joy with that one, in fact he rather seemed to like the green one as he was more prominent when that one was on! This weekend I saw him for the first time in our hall on the floor. At last I could catch him and place him safely outside - hopefully never to roam our house again. Result one happy Izzy, personally I shall miss seeing our visitor around, he did us no harm but at least we have a happier little girl.  

Eyam. We did it.

Though we did go to Eyam last year we sadly did not manage to get into the museum. I wanted to know more about this village that made the huge sacrifice to keep the Black Death from spreading to the outlying villages. The museum is well set out with an amazing video outlining the way they  managed to do this. Worldwide the Black Death killed one third of the worlds population, yes you saw it right, worldwide one third!!! Eyam kept it contained even though it meant that more could have been saved had they fled. There were many deaths and the museum talks about a few individuals along with dressed up dummies to depict them. Izzy hates dummies so we had to move quite quickly past each and every one of them. This was a pity as I could have spent hours in here. Never mind, it means another return one day which I will look forward to.

Whilst in Castleton, just outside Eyam Izzy climbed to the top of Mam Tor and was elated on her return.  One of the three peaks is next on her list to walk with her granddad ready for Snowdon sometime next year.  She also did both the caves and came back telling me how in one of them, named locally as the Devils Arse the entrance to the cave is so big that rope makers carried out their work here. She watched a demonstration and bought a piece of rope. It sounded fascinating but it was one cave I could not do as there are over one hundred steps to go down into this and that means of course one hundred to climb out.  Certainly not for me.

Not sure of this paragraph because I doubt know if it will work but if it does here goes.  This is a video of Izzy when she was very young.  We had taken her to see her very first pantomime, Dick Whittington.  I remember putting the bows in her hair and her excitement as we set off.  She soon learnt to scream and shout at the villains in the play and had a wonderful time.  Now it is set in stone that yearly she goes to see a different pantomime and really looks forward to them.  I love this video and the way she pronounces grandma and Grandad.  

Modern Technology scared me witless

As with most people nowadays we have lots of gadgets designed to make our life easier, or lazier in fact.  We have Alexa in all the rooms and yes, to a point it has been great to keep in touch with family in different rooms of the house without my using the stairs.  I can ask Izzy to come down from playing in her room with her friends, always easier to use Alexa than my lungs.  I can coax Colin down from the study, { almost finished now} for dinner etc so I was quite happy with her.  However I was scared out of my mind one evening when home alone.  I was in bed and a blast of classical music belted out from the kitchen, loud, I mean REALLY loud.  How had this happened, there was nobody else at home.  I went in to check all was well and to turn her off.  My thoughts were had somebody entered the house, were they playing a sick game with me.  Then I realised our dishwasher, that opens on its own when finished so it can air dry was open.  Had a gust of steam, or the click of the door opening caused Alexa to turn on. Off I went back to bed but had not even stepped foot into the room when off she went again! Back I went and this went on around four times until she went quiet. I must confess to being shaken by this and was very happy when shortly after Colin arrived home. I told him something weird was happening with Alexa and he laughed! It was him setting her off from the home of our friend to ease my mind with classical music.  He is lucky he is still attached to his head!!!

At last we have chosen new furniture for our lounge, really pleased as right now it is not really a cosy place as the furniture we had was not right.  It is not an easy room to furnish because of the slopes and angles of the roof so we needed to live in it and think about where we would go with it. It needs to be cosied up so in around five weeks we will have now sofas.  Then down to us to get side tables and lamps etc to complete the job.  We are almost there with the house, just the finishing touches. 

All for now, so sorry to have to spread the awful news of Barbara, always sad to lose a brother or sister to ph.  

Warm love to you all and as ever, please comment or click like, it means a lot.

Carole xxx

Tuesday, 30 October 2018

AT LAST - NORMALITY

Stem cell trial for ph in America?

In the middle of the night I opened my computer to see a post from a ph patient who was jubilant to be told she was to be admitted onto the trial for stem cell treatment.  I know nothing more about it than that small post other than she went on to say that if she is given the placebo at the end of the trial, if it proves to be of benefit, she can then be given the real deal.  I am aching to get in touch with one of my trial consultants and ask if he has heard of this, particularly as he has been for the past nine months in America.  I know we were told it was a few years off yet BUT maybe there has been a break through, maybe this is the one.  If anyone knows anything about this please tell us as I feel sure we will all be longing to know.  I promise when I get in touch with my consultant I find anything out I will post it.

Since then I have had a post from somebody who had a similar trial in Canada, four weeks of stem cells and four weeks of placebo.  Sadly it dd not work and was not the cure we are all looking for  I hope this one has something different to offer, we live in hope.  

Hospital Visit

My first one for nine months and it went really well.  Robin my specialist said he was pleased and could see no more deterioration since my last visit so I take that as a great sign.  I had been so busy these past few moths and I did wonder sometimes if I was pushing myself too hard and it might be to my detriment but that appears to not be the case.  Robin told me to continue with walking as it is in essence like taking another med for ph as it helps to work the heart muscle and open the lungs up.  I will happily comply now that we are more settled.  He also said there were a couple of trials coming up that might be interesting for me but he wants to discuss them with Alex first on his return from America.  As you know I love to trial so I am waiting impatiently to found out which two he is talking about and will I be allowed to be on either of them.

Our hospital, Royal Hallamshire wants to begin a new panel, containing specialists, doctors and nurses and a ph patient.  I was asked if I would be that patientsso of course I agreed.  Not quite sure what it entails exactly as they are just getting it all together but  think it might be where ph patients can ask questions and be answered by one of the team.  Should be interesting, we shall see.

Our Emphasis Magazine arrived and I was happy to see that a date in May has been settled for our next conference.  Though too early to book ourselves onto it yet I was really pleased to see it in print and look forward to meeting up with many of my ph family again or even to meet new ph friends.

Our move

We are in and safely ensconced at last in our new home.  Though there are sill a few things to be dealt with nothing is too terrible that we cannot enjoy living here.  The garage still needs to be sorted, as does the study but everywhere else is all done and dusted so that we can really relax here now.  I have posted a few pics but to be honest you do not get the feel of the place on a pic or really see the quirkiness of the rooms.  Some of our family came to see it yesterday and really liked it so we both felt a sense of relief that we had done something right in all of this.  I must say my daughter did a great job of choosing drapes and blinds as everything matches well and looks just perfect to our eyes. I certainly could not have wished for better.


View from the study
Sometimes on bad days it can take quite some time to answer the doorbell so we decided to invest in the Ring pro.  This is great device that enables you to see who is at your door and to talk to them through your phone.  It will be a boon when we are out also as you can see and talk to anyone on your doorstep.  however as ever with me this turned out to be a disaster.  As we are novices with this device we did not realise that on my phone every time any movement was heard outside it tinkles.  There I was sat in my hall, {church} and a tinkling came from both my iPad and iPhone.  Realising what it was I went outside too try to turn it off.  Well as you must all know by now I am not computer savvy at all so struggled to turn it off.  As I am struggling to deal with it the tinkles resounded around the hall.  I was mortified.  In total it took me around ten minutes to disable it but in that time there was a big black cat running up and down our drive and every time our ring sensed it the tinkles would resound around the hall.  Lesson learnt and hubby has taken them off for me, trust me never to return.


Kitchen with dining room ceiling in foreground


Hall
The terrace
We would really enjoy a holiday abroad right now but to be honest that just cannot happen, still too many things to deal with but never mind.  The weather has taken a change for the worst so maybe it is time to snuggle down and enjoy the warmth of our home before venturing to far.    

Looking out on terrace

We have promised to take Izzy away so that she can walk up Mam Tor over the holidays and I am hoping that when they do that I can go and visit a couple of friends I have in Castleton which would be lovely.  I have also been promised that I can go around the museum in Eyam, last time we were too late as they had closed.  This is the village I mentioned in one of my blogs where the plaque was rife but they controlled it by not leaving their village, not even for food.  All was delivered and left a safe distance away and money was left for the said provisions in a jar of vinegar to hopefully kill the source of infection.  I hope to read more from the museum about this fascinating true story of self sacrifice by these people  They could have fled, unknowingly sometimes taking the plaque with them and spreading it elsewhere but they stayed and stuck it out to the end.  So many lives lost by rats carrying the plaque and it going to them in bales of material.  I need to read much more.

Izzy and her braid

Many months ago on an holiday away with her beloved granddad Izzy was allowed a braid put in her hair.  They can stay in for quite a long time and she must have had hers in for around four months.  One night when she was saying over with us as she brushed her hair out fell the braid.  You would have thought the sky had fallen in so upset was she.  She just loved that braid.  I am rubbish with hair so had no clue how to get her another one.  On telling Anna, my sons' girl she smiled and said she  knew how to do them.  As her father was Jamaican she has been braiding her own hair since a very young age.  We shall not tell Izzy and it will be a lovely surprise when Anna turns up with the materials needed and the expertise to have another one put in.

Izzy has loved us moving here next door.  We receive a text from her each day after school asking if she can come round for a few minutes.  Of course our answer is always yes and she turns up with a huge smile on her face.  Yesterday was no different and she enjoyed paying hide and seek with her cousins all over the house.  The sound of laughter was in the air and I knew we had made the right decision to live here.

Yesterday it was cake making here with Izzy and despite the calorie take I must confess it was really delicious.  
Our apartment has now been left in the capable hands of our tenant and she was delighted on Friday when she turned up and we showed her where everything was, how things worked etc.  I know it is in good hands and hope she enjoys living in it as much as we have.  We received many cards from our old neighbours and flowers and well wishes.  I know most of them will find their way to visit us here so I did not feel too bad.  Our next door neighbour cried when we last spoke but I told her she would get to know and like Brenda and I would always be visiting as I had been friends with most of the residents for many years.

Well all for now and I am looking forward to catching up with you all again, I know I have not been online as much as usual as we were so busy but back to normal now.

Warm love to you all and please, as usual a like or a comment will be lovely.




Wednesday, 3 October 2018

TOO HARD A BLOW R.I.P. SERENA LAWRENCE

I was so saddened to read a post a couple of weeks ago from Serena Lawrence who told us she was dying,  She meant imminently  as the doctors told her that the medicines she needed were actually poisoning her body due to her taking different and more meds since she developed PVO disease.  I hoped against hope that she was wrong, that she could fight it as she has fought her illness for five years.  Sadly it was not to be and we lost her.  Serena was a huge voice for ph, an amazing writer and a beautiful young lady of just 30 when her disease took her a week ago.  Serena was the creator of The PHight or Flight Project and wrote her blog talking about ph and also the blogs of many other sufferers.  That she was spunky came across, that she was a fighter also came across in her blogs.  We have lost a truly inspirational young girl to ph and it is too cruel a blow to our communities.  Serena lived in Canada but it is true to say that in the world of ph she was known across the globe.  My heart goes out to all her family and friends who have suffered such a cruel loss.  She will be missed so much by so many.  R. I. P.  Serena and thank you for all your words of wisdom and telling it how it really is with PH. 

Are there really any ups to be had with PH?

There is no doubt it is a devastating illness.  It takes so much from us, more than the eye can see.  It leaves us so tired it is hard to put into words.  For sure i had never known such tiredness before being hit with this disease.  We lose friends as we can never be relied on to actually follow through with any plans we have been brave enough to make for the future.  Heck we cannot know how we will feel from one minute to the other so how can we be expected to know days in advance.  This disease slowly but surely suffocates us unless we are fortunate that the meds we take hold this at bay.  It is never a given, for some they help, for others they don't.  I could go on for pages about ph but I won't, you know how it is, you either see it in the face of a loved one or you are suffering from it yourself so I will answer my own question Are there any ups to be had with ph?

Of course I can only speak for myself.  For me though since being diagnosed I learnt for sure who my real friends are.  They have stood by me, helped me and been there for me when I was truly unable to do anything for myself.  I have learnt which members of my family keep stress away from me and which are happy to throw more and more stress at me too.  This knowing we are told stress is a huge killer with ph.  I have learnt to enjoy each day and be grateful for them, no matter what.  

I have learnt first hand that for sure we have the most amazing teams taking care of us.  In the midst of all the NHS cuts here in the UK I can honestly say I have not been affected.  My care is second to none as I feel sure are my fellow ph brothers and sisters.  It is nice to know that there are so many researchers out there doing there best to find us a cure.  If I had not had ph  all these are things that I would have been unaware of.  I took my health for granted as most of us did.  How could I have ever known that from such a devastating illness I would make friends with ph brothers and sisters across the globe.  

I have been fortunate to have met many of them from the UK as we meet up at our conferences and share stories and learn what is new on the horizon.  So many friends and none of them I would ever have met had I not had ph.  Ph teaches us to really care about fellow sufferers.  We come  together as a community and help to give support and advice to each other.  Though we know we will never see most of our ph family in the flesh we are united in one goal, to do our best to beat this disease. 

PH has taught me to be positive, to not let go.  It has taught me that negativity plays no part in m life.  I will not give in and will fight while I have breath in my body.  I focus on living and not dying.  Because of the way this illness takes away our stamina from time to time it has taught me to take up hobbies that I did not have time for before.  A bed day can be spent doing research, reading books, writing letters etc.  I am determined to make the most of each day whereas before I thought  my days were endless, I took them for granted.   So ph has taught me to be thankful for new days that dawn, new days to live and enjoy.   

So of course I wish I had never known ph existed yet alone had it but I always try to stay positive and look for a plus in any minus situation.  In this instance yes, there are plusses  in having ph.  All my ph family and friends are plusses and I thank each and every one of you for being there when I have reached out to you.  

Getting there.

OK at last we are really almost there with the house.  It has been cleaned within an inch of its life and all windows, both in and out and architrave has been cleaned and polished.  Our floors have been swept and washed five times in total and I have even begun to move some things into the house. For me it is much  better that each day we take down a few more things that can be nestled in their permanent place now and forgotten about until the final move in day.  My daughter has dealt with everything to do with curtains and blinds, choosing them, walking around with the guy and deciding on the fabric etc.  To be honest I cannot remember what will go in which room and I care not a jot.  I know my daughters taste and know it will be fine.  Whereas many years ago before ph I would have thrived on things such as this I now shy away from them.  They make my stress levels go through the roof and it is just a house, not worth getting more poorly for.  I am still delighted with it though and I promise pictures will be here soon.  Tonight as I looked out of our bedroom window just before we left I was enjoying seeing cows in one field high up across the bank and sheep in another.  The sound of the animals comes across on the wind and I know I will enjoy living in such an idyllic spot.  

Izzy

Typical that today just before we left for school, she is staying with us for three nights, her coat zip broke.  No time to go down to her house to collect another coat so I just had to hope the heavens did not open on her when she was in the playground.  All was well fortunately and meanwhile I went into town and bought her another new coat.  To be honest I was planning on getting her one for the winter as she had had a growth spurt and shot up.  As she was not with me I was unsure of which to buy but my choice turned out to be perfect, she loves it. so I "did good grandma" as she told me!!!

This year I had hoped to have got away without getting those Lego cards from Sainsbury's  Last year I swore it would be my last as I dealt with two books for the kids so this year I just handed over the books of cards and said they could use them however they liked.  Was a blow when I discovered one of the kids was in the middle of doing a Lego book!  Urghhhhhhh so here I am again trying to sort out swaps and begging for extra cards when I shop at Sainsbury's.  I fear I will not complete this one this year but no matter, next year NO MORE LEGO BOOKS FOR SURE!!!!!

Right I aim to get this out tonight as so many people have been asking if I am OK as I have not blogged.  The house has taken up all my spare time.  Thank you for your concern, it warms my heart it really does.  Still waiting for the reuses of my colonoscopy but no news is good news and still waiting for an appointment to see a gastroenterologist so I can have my ferritin infusion, other than that tired but doing ok.  

Now I must go and make sure Izzy gets her teeth brushed correctly, though she does the allotted two minutes I know she sometimes brushes one side more than the other!  

Warm love to each and everyone of you and please either click like or comment.  It matters, it really does. 

Carole xxx