Sleepless in Halifax

It is almost five o clock in the morning, Colin is snoring away at the side of me, though he will tell me in the morning he hasn't slept, so what better time to begin a new blog.

Late afternoon and early evening I was waiting for the headache from hell to really send me reeling and it didn't!  I can still feel the low grade headache I have all the time since ten days into the trial medicine.  I can live with this, I hope this means my body is accepting the new trial medicine.  Maybe it might work so I can have more energy after lunch and so enjoy my days better,  We shall see but I certainly hope I don't get slammed again with the headache from hell. 

A good friend of ours is staying over with us on Saturday and Sunday, he lives in Canada.  Indeed, it  was Gordon and his wife we were with in the Grand Cayman where we had our honeymoon.  It is always a pleasure to spend time with him.  Unfortunately we don't see much of his wife Pat as she has lots going on in Canada.  We like to make him feel welcome and we are always looking for things to do with him that we know he will enjoy.  

Gordon loves our old buildings as I have said before so we have mapped out quite a nice afternoon and evening with him.  Our Art Center is having a Christmas Market so we shall take him, and Izzy as we shall be having her here for the day too.  I shall enjoy looking at all the lovely crafts for sale whilst Gord will be busy looking over this amazing mill, and Izzy can draw or mould things there so she will enjoy this. Such great use has, and is, being made of this brilliant building.  I know he will just love it.  

On entering the place your nostrils are assailed with all the smells of bygone times when the mill was used to weave cotton.  The smells are of the oils used to keep the machines working well and seamlessly work their magic with the cotton.  The roofs are so incredibly high and I close my eyes I can imagine the clatter of the machines and the banging of the clogs on the floor as the women did their work, and the shouting that would have been going on so they could be heard above the clatter of the looms.   I love the steps, they are many, very many, but the treads are so narrow, a testament to the times long gone when we were all so much smaller than today and so were our feet,  You can see the wear on them from many feet over the years and as I walk up and down them I wonder who the people were from the past who did this self same thing and which job they had in this huge place,  The doors are huge and so heavy, made in the most part of iron. I wonder as I go towards them who pulled open these doors, what were they carrying?  Maybe they were stopping for lunch and had their tuck with them.  Always fascinating for me who always wants to go back in time for a day and live their lives.  I do hope the day goes as well as planned, I shall tell you in a later blog after he arrives and our time together has been spent. 

Later when Izzy has gone home we shall have our meal. We are not sure if we will have it in the cabin with a fire lit inside the pot bellied stove or indoors here, it is very much dependent on how I am feeling.  Michael our good friend will be with us too no matter what.  We have planned our menu carefully to be tasty but easy to do. Colin is in charge of the starter, a really lovely salad with crunchy lettuce, pecans, cranberries, Stilton cheese and crunchy apples topped off with pea shoots and dressed with a French dressing, it is a simple but tasty starter.  The main is simple too being a chicken cacciatore served with rice.  This will sit in the slow cooker until ready to be eaten.  I like simple things.  The dessert will be one of Colin's favourites being a million cheesecake.  Easy to make though there are a few different stages.  I personally am not keen as I am not a chocolate fan but I know it will go down well with the three men at the table.  I would prefer a nice Tart Citron as I just love the sharp tangy lemon taste. 

Speaking about lemons, and I do have plenty lemon recipes after living in Spain and growing them, I saw a nice recipe by Mary Berry I should like to try out.  It is a sort of lemon meringue pie.  Now I have made gallons of lemon curd and lemon fillings in my time but hers was different to any I have ever made so I shall try it.  I also liked that her base was one made of crushed biscuits as opposed to the normal shortcrust base on a lemon meringue pie so yes, one for a try out. 

The joy of the phone

I was delighted today to have a proper catch up with my good friend Sue Reid.  Sue and I met on Facebook but soon became good friends and we went to visit her in London.  She is a fascinating lady as she writes books, mainly for schools to teach children history,  I have bought a few myself and if you are fortunate enough to come across one of them then don't pass it over, they are great reads even for us older generation.  Today we spoke on the phone for an hour,  I truly don't know where the time went but oh how lovely to hear her voice,  Next year she will come and stay with us for a while so I shall look forward to this very much indeed.

Brrrrr, too cold to go without heat and  hot water. 

A friend who lives opposite me has had no heating and no hot water for a week!  Her place is a cold place too in winter so I do worry about her.  She is waiting for a new boiler which will be some time coming yet. She came over to us for a shower today, first one in a week, though she does keep herself clean, How she enjoyed the warmth of the shower and the comfortable warmth of our place.  After her shower I settled her in a cosy spot with a glass of white wine,  I could see her visibly relax as the welcoming shower and the warmth and wine were relaxing her so much she felt sleepy.  That is until a tornado hit,  The tornado was in the shape of Izzy arriving home from school,  There were high pitched squeals of laughter as she and grandad made paper planes and saw which one flew furthest.  Then followed lots of drawing.  Izzy drew herself and a dog whilst grandad drew elves, pretty decent ones too.  Then came a game I didn't follow but it did include plenty of hats!  The laughter got louder and louder and pretty frenzied too as they dashed around from room to room.  The sleepiness quickly wore off my friend. She was telling me she was using plenty of wet wipes, the pampers variety to keep herself clean whilst waiting for her new boiler.  I was surprised to learn from her that these  wipes are amazing in that they remove stains from clothes.  Hannah personally had spilt chocolate down her top, hard to get off whilst wearing it but she just wiped it with a baby wipe and hey presto, gone with no mark to be seen.  I shall certainly be trying this one out. 

Thursday's walking group.

We did one of our favourite walks today being a nature reserve called Cromwell Bottom.  There is always something different to see.  The colours of the flora and fauna are changing often too and we see the rise and the fall of the river.  Today there were lots of the volunteer working party heading out to do their things and Colin has decided he will join after Christmas.  Afterwards whilst most were enjoying a nice cuppa we were asked if we could think of anything to improve the reserve as they were always looking to do this. One suggestion was more seating going around as for the disabled such as us we do need plenty of sitting places and I suggested the poo sticks seen in some nature reserves. These sticks hang over the boughs of certain trees and can be picked up whilst walking around with dogs.  The sticks are then used to flick the poo into the undergrowth in the hope of stopping all the bags of poo people decide to hang on trees.  Why do they do this.  Why do some people believe they should not have to clean up their own mess.  I wish I knew the address of some of these people.  I would ask all my friends to go and poo in their garden, pick it up and bag it  and hang it firmly on the boughs of their trees for them to have the pleasure of collecting, or indeed the pleasure of just watching all the bags swing merrily amongst the trees. Or maybe we could do as some do who don't even clean up the dog poo but just leave it for us all to walk through and take it around with us on our shoes until we get home and have the facilities to clean their dogs poo from them.  If my friends all did this in their gardens and on their paths it just might give them some idea of how irresponsible they are with their pets and their pooing. The Nature Reserve people are going to look into these sticks  as the bags are so unsightly.  This won't stop the ones who can't be bothered to do anything at all but may help with the bags being strung from trees with dog poo in various states of decay because the owners can't be bothered to carry their bags to the bins provided, 

Izzy and her "operation" 

Izzy rang us this evening to ask us when we are taking her for her operation as she knows we are taking her as her mommy is so busy in the run up to Christmas.  What is this operation being carried out on our darling girl?  Well it's a flu jab!!!  I have said before she is a wimp and cried when her mommy asked us if we would take her as she said she is scared.  I truly hope she does not grow up with the fear of needles.  How pleased I am that I don't or with all the needles we have as ph patients I would be on my knees.  So she is NOT having an operation, just a tiny jab next Wednesday.  I do know I am fortunate as I know some people have a very real phobia about needles and I truly do feel for them.  

I well remember Hazel Roberts a ph friend of mine who sadly died after her lung transplant.  She dreaded her visits to the hospital for the very necessary blood tests.  She said she would sometimes feel physically sick at the thought of going.  I hope Izzy does not grow up with that very real fear as there are many times in our lives where there is an absolute necessity to have these blood tests.

She also asked us if we would be able to go and see her collect her prize for good reading. 

Sadly on this occasion we had to say no as we had a prior engagement.  It is a pity but there are so many of these awards given out so we can't possible make every one of them.  She accepted this ok though and I have promised,to look out for an airplane she wants.  Not a pricy one, just one of those that you buy for around 50 pence made of some kind of polystyrene,  Both her and grandad are into throwing planes around these (sadly despite searching and searching today I can't find these planes anywhere, maybe they have stopped making them). She will have to continue with the paper plane variety and be content. 

Black Friday

Not sure if any of you made it out for Black Friday.  Maybe you shopped online to avoid the queues.  Colin reluctantly agreed to go with me and we decided we needed to leave early to avoid getting caught in the traffic into Leeds. We planned on leaving here around 6.45 a.m.  Colin had been really tired the last couple of days and yet  had trouble sleeping so he took a sleeping tablet.  I was up at 5.30 which was no hardship as I am generally up at 6.00 to take my medicines.  He slept right through my showering and blow drying my hair and getting dressed. I did then try to wake him but to no avail so decided to go it alone.  I texted my son who lives in Leeds centre to tell him I would be in his neck of the woods if he wanted to meet me.  I did then write a note to Colin and left it on the bed. 

The journey in was seamless and I arrived at 7.00 which was perfect timing.  I bought myself a couple of bits and then went for a drink and a sandwich and my son arrived just as I was thinking of leaving. We had a lovely time just wandering and I bought him a pair of jeans in the sale with a 20 percent discount,  I managed to find a small toy for Izzy as she had got her reward at school for it turned out good maths!  At least it wasn't for good sitting!   Meanwhile Colin had rung me to see where I was.  I  told him I had left a note but it had got lost in the duvet.  He got up and looked all around the house for me and was worried as to where I could be at 8.00 which was when he had woken up.  Upshot was he decided to go on and see Izzy get her award and he said she was so thrilled to see him, really excited and pleased so in fact the day could not have gone any  better.  Pity my daughter couldn't have shopped with me as she has oodles of style whilst I have none but work dictated otherwise.  I have now arrived home with feet the sorest they have been in a long time but it has been a great day.  The great thing here was that rather than the frenzy of last years Black Friday most people had decided to shop online so the stores were really quite quiet, well certainly at the time we were there, though it did begin to fill up by lunchtime and Haydn's' search for the right jeans. Certainly by this time Harvey Nichols had its fair share of bargain hunters. 

I bought three jumpers and a couple of pairs of jeans and a leather jacket.  Haydn at last found the means he had been searching for for a long time so I can rest in peace. 

Still no headaches from the trial pill so that is a bonus as I only had them for around ten days in total, don't think they will come back now.  Pleased about this as shopping and headaches don't go together. 

Health Care @ Home

Well I DID get my delivery though not as I was told.  My expected delivery slot was to be Thursday evening so you can understand my surprise when we were enjoying lunch at 1.30 in a lovely olde worlde pub when we received the call to say they were outside waiting for me to open the gates so they could come in with my meds!   We told them my delivery slot was for the  evening but they said they had me down for three o clock!  So even then they were one and a half hours earlier than the time on their slot, though certainly not the evening delivery we have been promised. We were astounded and as there was no way we were leaving with a fabulous meal half eaten we asked them to go to another address and have it signed for.  Fortunately this was done and I received  my medicines.  It was so good then when I read replies to my last weeks blog with news of the cock up that I read what Nikki Bennet does about this and I think it is such a great plan and I  shall certainly see if I can do this.

Nikki Bennet had a great idea about deliveries for our drugs. She asked her chemist if they would accept her drugs and they agreed. The result is that she is not tied to the house and the chemist is happy to sign for them and she collects them at her leisure.  Brilliant idea Nikki, I bet others on here try that too, a great time saver.

We have had this before

Primary pulmonary hypertension is a condition where the blood pressures in your lungs is too high in the blood vessels that supply the blood to your heart.  We all have TWO kinds of blood pressure but this one cannot be measured by the blood pressure cuff.  Often my blood pressure reads normal even when I know my pressures in my lungs are way too high and rising.  This is why we MUST have a right heart catheter to really see the pressure in our lungs. So you can imagine how pleased I was on seeing a new doctor at my own surgery to discover that he had referred two patients to Sheffield from Leeds who HAD been diagnosed with ph.  No of course I am not pleased they have ph but he obviously knows his stuff and for sure he is the one I shall ask for on any future visits.   If you have symptoms of ph and doctors is saying you are fine, your blood pressure is great it's just asthma and the medicines do not help ask to see a ph specialist where this simple procedure can be carried out to confirm or deny pulmonary hypertension. It just could save a life of worsening ph. 

Pan pipes

The guys were in Leeds centre playing the pan pipes.  They were all dressed in the traditional gear and looked amazing,  The music always brings back memories to me of many holidays.  These pan pipes always seem to be playing in busy town centres throughout Europe, in particular Greece. York Center always seems to have them too as we go there often and see them.   Colin always sits and listens to them, he finds them extremely soothing.  When my daughter was around eighteen months old she used to dance in the square to this music, which inevitably brought more people in to watch as it was so cute to see a tiny baby swaying and moving around to the sound of the pipes.  They always collected more money too so she was a great crowd puller!  This time as they were playing one of the extremely long beautiful feathers came out of his headdress and floated towards me where I grabbed it.  It must be eighteen inches long and beautiful colours. I did  offer it back but he declined with a shake of his head so I have brought it home to give to Izzy.  Way too big for my memory box but we shall keep it somewhere as she will love to play tickle games with it,

A strange coincidence of music being played in the streets.  Many many years ago whilst I was out shopping I stood and watched and listened to the beautiful bag pipes being played by a piper in full regalia.  I knew my eldest brother Tony loved the kilts and  the sound of the bag pipes so much that two years earlier when we truly believed we would lose him to a terrible illness he told us he wanted bag pipes playing at his funeral.  How relieved were we then that he recovered his health and his weight going from 6 stones back to a healthy twelve stones.  In my head as I listened to the pipes being played I thought then of my brother and felt relief that we never went down this road, I checked my watch whilst standing listening and the time was just 10.30.  I continued with my day and arrived home in the afternoon and the phone rang,  I answered the phone to be told the devastating news that my brother had died that morning at 10.30 after a valiant effort by many doctors and nurses to save him.  He had died as I was stood listening to the sound of the bag pipes.  I have never forgotten and now whenever I see  or hear the pipes I feel sad and wish for my brother back.  Of course he had his wish from two years before and he got his humanist burial in his garden with the pipers playing him to his final resting place. How I wish he was still in our lives.  He was a kind gentle and generous man, doing much for the under privileged in our country and abroad. 

Great Weekend

The weekend went well, though was extremely tiring as we also has Izzy.  We took Izzy down to our art centre as planned and she had a thoroughly good time.  We bought her two pottery ginger bread men for tree decorations and then we saw a mouse so cute that we bought it for the memory box.  Izzy was making her card for mommy and also making an decorating her own Christmas wrapping paper for her mommy.  She had a whale of a time and  she all loved the studios which we took her around, check out the picture, she is standing next to a skeleton. 

Whilst she was doing this Gord rang to say his arrival was imminent so Colin went to collect him and brought him back to the mill.  He really enjoyed this.

Dinner was in the toasty warm cabin and all went well though I was so exhausted I did fall asleep on the sofa.  Now woken to a new day, church and now a chocolate cake is baking  in the oven.

Amazing lunch out and back home for a rest.  Picture of the mouse along with the things from Jessica's  baby shower for our memory box, always a memory somewhere.

All is right with the world, though the weather is terrible!

Love to you all. 

Carole  Xxx

All kinds of everything

Progress on PH friends

Candice Mills Fortner, one of our ph family living in America has recently posted on Facebook that all her tests are the best she has done with ph since having her Remodilin Sub-q.  Her doctors are so pleased too at this brilliant improvement in her condition, Candice is so excited at this news and said that despite all the side effects of the drugs she needs to take life is sooo much better and the up  side is worth any down sides the drugs cause her..  I do hope her experience and excitement of getting more of a life back helps the ones who are headed in this direction with their ph medicines, How I love to read posts like this.  We do need to share the ups and as well as the downs of this disease.  

Parris was in total despair when she was first diagnosed and despaired of ever sleeping in her own bed as stairs were just too much for her.  Now at last, after nine long months of ph medicine she has just posted that she is  sleeping in her own bed.  The joy and excitement we saw in her post is so lovely to see and what a great inspirational piece for the ones struggling at the beginning of their journey or a change in medicines.  Well done Parris, we always said things would improve in time and they have done.  I am so very very pleased for you, as I am sure are the rest of your ph family xx

Steph Ingram has had her line removed and is now at home with her oral medication. ,The Hickman line did its job,and helped her heart to rest. Great news Steph, maybe we will one day meet up at our hospital, our paths must cross soon as I will be attending often for the next few months.  Will be lovely to meet in person.

Anna Caroline Bowen has had her line put in and is now beginning the lessons into how to manage her drugs and her pump.   She has been getting worse with her ph but hopefully now she has the line she too will begin to feel better and have her life back.  Thinking of you Anna.

Health care at home 

Now I must confess to having had very little trouble with this company up to now.  O.K maybe at the start when they sent the wrong syringes but this they rectified as they sent a courier and at 6.30 in the morning there were my correct ones for me.  I know lots of you had trouble so I felt pleased it never seemed to happen to me,  Now though I am annoyed as they have changed their time slots for delivery to ALL DAY.  For heavens sake we have compromised lives already we don't  want to have to sit in all day to receive the drugs we take daily,  I often have blood tests on the same day so I arrange them for the afternoon and ask for morning delivery for my meds.  Plus I have just began my pottery class on Monday afternoons. All needs to be changed now,  They are getting like gas and electric and delivery companies with their all day slots.  Not good enough Health care at Home, give us back our morning or afternoon slots.

I rang them this morning to ask what time my delivery was.  I was told to do this as once things were on the van they would have an idea. Well mine was for the afternoon slot at 2.30.  Totally out of the question,  My pottery class is in the afternoon and I am not prepared to give it up.  Colin is away in the van or we could have done it between us,  I was asked if I wanted a Saturday all day slot, NO, I don't want an all day slot at all, let alone a Saturday one which would mean there would be no more weekends away when my delivery was due. End result was we agreed to a Thursday evening slot,  If we are going away we shall ring and change it again but I am usually in bed early in the evening and Colin will be able to sign for the meds,  So what happened.  Nobody thought to ring the delivery driver and tell him the change of plan.  He was outside our door when he rang  Colin and asked where we were as he kept ringing the bell with no response.  Fortunately I had told Colin of the change of plan and he was able to tell the driver,  Pity about the lack of communication between driver and the office.  Precious time was wasted,  Anyway let's see how we get on with our evening slot.  

Pottery

Still going well and loving and learning all the time,  I have decided I want to do a bowl, two sided in its construction in that it shall have the ph ribbon in the middle of the top and underside of the bowl and then the stripes to represent the zebra.  Then I shall  paint the ribbon periwinkle and the stripes white and black.  The periwinkle shall have to be tested on tiles and fired so I can get the correct colour as often the colours change completely when being fired.  Not sure how it will turn out but oh the fun of trying. So committed am I to this class I even bought my own apron!  I wasn't going to bother if I was only going to do six sessions but I know I shall join up for the next and the next all being well.  I haven't even finished my first effort yet as it takes so long to dry and then fired and glazed etc so it is all ongoing. To date I have three pieces,  all in different stages,  going on! 

Today I finished my piece with the ribbon for the symbol of ph.  Now just waiting for it to dry., I am so pleased with this piece and am hoping it doesn't blow up in the kiln. Everyone thought  it looked really good so I am so looking forward to glazing it and then at last I will be able to post pictures of my efforts.  Now I need to make the stand for it to sit on.  

Home alone 

Colin has gone off in the motor home again,  I didn't want to go as the weather is not going to be the best.  Colin walks and bikes in all weathers but it isn't good to be out in really bad weather when you have ph.  It compromises our lungs too much so I am staying home.  He never leaves if I am going through a bad patch and he never goes more than a two hour journey away so he can get home pretty swiftly should the need arise.  

Once Colin had gone I went out for a while to get out of the cleaners way.  It is always so nice to come home to the smell of discinfectant and polish and a gleaming house,  I barely had stepped in through the door when my neighbour asked me if I would take him shopping,  Now I have spoken of this guy before, Roy, I love him and worry about him so take him up first thing in the morning a glass of complan made with jersey milk to try to get his weight back up.  Of course I said yes to this but nothing is ever straight forward with Roy,  He then said he will be ready at 1.30 and I need to take his cleaner home too!  Anyway off we went and  I did as I was told and dropped his cleaner off and then carried on to Tesco where he did a big shop.  Then he said we needed to go to Asda, when I asked why I was told the salmon was cheaper there.  Off we went where he bought a side  of salmon and had it cut into individual pieces and packed in individual bags and sealed, it took ages!  By this time I was going "off" as I always do in the afternoons so I was  ready for home but it wasn't to be.  He wanted to look at the lounging about suits, or floppies as I call them, trousers and tops but not pyjamas but made for wearing in the house.  He couldn't see what he wanted so decided a coffee  was next on the agenda.  He then told me he would look at Sainsburys today for one so that is my today's task!   On arriving home I ate  a bowl of cold pasta as I couldn't be bothered to do more and went to bed.  I slept from six until 4.10 in the morning.  A complete eight hours sleep, almost unheard of but it did me good.

Oh so tired, and feeling oh so rough.

Well I didn't get to take Roy for his floppies.  By twelve o clock, much too early for Roy as he doesn't get up until 1.00,  I just knew I was going "off". My head was banging so bad and I could hear  the whoosh whoosh of the blood through my ears. Pain in my right side too is bad and I just can't be bothered to get any food.  I do wonder if it is a side effect of the trial medication as I remembered two hours after this started today that they were some of the side effects of the drugs. I have been on the drug for ten days now so maybe it will be.  If so I assume I will, over time, get used to it. For now though I am in bed with no plans to leave it soon. Hoping tomorrow I feel somewhat better. Would hate to feel like this for the length of the trial.  Signing off for now, no strength to be writing even.

Awoke to a better day so far BUT not tried to get up yet, hope I am not as wobbly as I was yesterday. So far the headache has gone too, or almost though there is still a little of it, a reminder to get in touch with my doctor and ask for the pain meds and anti sickness tablets that were prescribed for me when I began the iloprost as the headaches are reminiscent of the ones I  had when I began my medications  through the Hickman line. They were horrific so do not wish for those back again thank you.   As I was in bed I began catching up with a little of writing to people who are wishing to join our ph group.  I have discovered some people just want to join many many groups so they can gain more and more friends!.  Of course we don't allow them as our ph website is for people suffering with ph or their carers, though we do allow friends of ph sufferers too. 

I shall get out of bed now and make Roy his complan, hope I do manage to take him out to Sainsbury's today too,  How exciting my life is.....NOT. 

Controversial 

Driving my car on a MAIN busy road I was shocked to see a man riding his bike on the road whilst his dog was running on a long lead beside him.  The dog ran in front of his bike so the guy veered into the middle of the road.  This caused me to swerve around him as I could so easily have killed both him and his dog.  On swerving there was a car heading for me and we narrowly missed each other.  I know some people prefer dogs to people, as has been pointed out to me when I posted on face book BUT even if that is the case why would any sane person risk their own lives, the life of the dog and lives of innocent people.  Even if you prefer dogs most people have family and I wonder how the ones that agree this guy was in the right would feel if their son, daughter, grandchild, mom or dad etc was killed in such a way.  Surely somebody that loves their dog so much would not even risk the life of their animal in such a way.  A busy main road is not the place to exercise a dog, find a park  or a country road or walk them on a pavement.  I may well lose friends over this post but I am sorry, no matter how much you love your dogs a busy main road should not be for the use of exercising your pets.  A responsible pet owner takes care always to protect their pets. .  Surely it is totally  irresponsible by putting the dogs life at risk, even if you don't think the lives of others are as important as walking your dog. Were we car owners to take our cars into parks and put dogs at risk there would be an outcry as we would be in danger of harming the dogs that exercise there .  To me dogs can never take the place of my family BUT I would never do anything so irresponsible that could harm a dog such as this guy did. I would hate you to think I don't like dogs, I do very much and totally understand that a dog is a member of the family, of course they are BUT would you put your three year old at risk, or your elderly mother, or son or daughter if you had been in my position.  Which way would you you have swerved.  Would you think the life of the dog was more precious than somebody else's family and swerve across the road into the path of the oncoming traffic risking your life, the life of your passengers and the lives of the people in the car headed in your direction.  I swerved into the oncoming traffic without thinking.  I won't do it again.  Awful though it sounds if there is a next time I won't swerve into the traffic,  I would swerve the other way towards the guy on the bike and his dog.    How then should we move forward.  Keep all cars off the road so as to give it all over for irresponsible dog owners. I am sure most of you take good care of your dogs, can you HONESTLY say that this guy was in the right?  Would love some replies to this one.

Across the miles

I have a cousin, many times removed who lives in New Zealand.  He helped me so much in my research for my Porter family tree, giving me many stories that brought the family alive.  Without computers, Facebook etc we would never have "virtually" met but I can take peeks into his family as he does into ours.  I shared with him the joys on the birth of his granddaughters and now can see his son getting engaged and planning his wedding.  I have "seen" them move into their new home and so much more.  Even a computer idiot like me can share their news.  As I write my blogs it is so lovely to see that they can, across the miles, also share in our news.  I know people mourn the death of  letter writing etc but without the computer I would never have known this side of my life and even though we have not met I feel a real bond with them.  It's strange isn't it how family does have this bond. Is it blood calling to blood, who knows but I cherish my New Zealand family and if their country is ever mentioned when I am with friends I always say I have family living there, even though we only met over our mutual research on family history.   Heads up Keith!  Well done for flying and WHEN we beat this disease we shall tour your country and visit you and Lorraine and get to meet your gorgeous little grandchildren xx  

................ And so to bed!!

What a day.  I haven't had such a busy day in a long time and yet I kept up with all I needed to do.  Maybe the meds are kicking in or maybe I was just so fortunate my ph didn't rear it's ugly head as much as it could have done,  I achieved all I set out to do and all on my own!  Whilst on my travels part of my task was to deliver an iced Christmas cake to my ex boss, I make one every year. The house was in chaos as they were preparing for all their family and extended family to arrive for Christmas.  This was something i did when I worked for them.  I did wish I had the energy to help out and who knows, maybe I will next year if this trial helps.  

Collected Phoebe, our granddaughter from school for the first time ever and brought her to ours for tea and then drove her to her meeting at the Sea Scouts.  I was gutted when returning home I found she had left her lip gloss behind,  Doesn't sound much does it but she had been so excited to show me this as the container it was in was a pretty special and she took it with her everywhere.  We don't see Phoebe that often as they lead very busy lives and live too far away for us to get  involved generally with the running around between schools and classes etc.  I am not sure when we will manage to get it back to her but I hope she isn't too upset to be without this.

After my incredibly busy day I was so relieved to fall into bed.  I then caught up with the admin side of the pulmonary arterial hypertension group.  I began "talking" to a lovely lady whose boyfriend has been told he has ph but is in denial,  He won't allow her to go to his appointments and she so wants to help him and to understand the disease.  She doesn't even know which type of ph he has or which stage it is at,  We would all like to bury our head in the sands with this disease but we can't do this,  I know I am so thankful for the support I receive from my husband with this ph and I this guy would involve his lovely caring girl friend,  She is so troubled and is not getting answers,  I can't give her the answers she wants, she needs to be in his meetings and also persuade him to join our group.  He doesn't want to as he doesn't want to think about having it,  I know she reads my blogs so this is for her.  Stress how important it is for him to ask the right questions. (I did tell her which ones he needs to ask) tell him also he needs to say he wants to be referred to a specialist ph doctor, a general practitioner will not have the knowledge a specialist in this disease has. Indeed without the right heart cath he can't even know for certain he has ph.   He has other problems and he has too many to be addressed by a G P.  I have told her she can message me any time and I will try to help but I know if he can take his head out of the sand and accept what he has and get all the correct care his life could be so much better.  I do hope he heeds this advice and that he does well once he is on the ph meds.

After I played catch up with this it was time to sleep, aahhhhhh bliss.

My first baby shower.

A few days ago I was invited to attend my first baby shower,  I had actually been invited to another friends a month before but had to say no as we were away.  This shower was for Jessica, a very very special part of my family,  Her mom had arranged it all without telling  her and she did such a great job of it too.  On arriving at the house the table looked lovely with much food and there were tiny little blue plastic table decorations scattered around all the plates, nappy pins and blue pegs and the tiniest dummies that looked so cute,  There was a cake decorated with blue foot prints all around and a baby on the top.  Little bags of heart shaped dragoons in blue were tied with a picture of a baby on it and the message Thank you for coming to Jessica's baby shower and the date. So much work had gone into hosting this shower for her daughter. 

When Jessica was due to arrive the lights went out and we stayed silent until she entered the room when the lights were all turned on. Jess was shocked and didn't know what to say at first as she looked around the room to see just who was attending,  As she stared around her she was silent and then her eyes caught mine.  She immediately came over to me, bent down to give me a hug and a kiss and burst into tears.  How pleased and fortunate was I to have had the privilege to have attended this so special occasion. Memories were made and Jessica's mom gave me things to take home for my memory box, this was so thoughtful of her,  Now the baby, a little boy, is eight weeks off his expected delivery date and I can't wait to meet the latest member of my family.  Jess received many many presents, beautiful ones and both she and her boyfriend have at least a great start in the clothing department for baby boys.  Let's hope the scans are correct or there will be a baby girl decked out in clothes with cars and boys things all over her! 

Well Colin arrives home this afternoon.  I must get out of bed and begin my day,  The weather is a bit windy here, hope it's not too bad where you all live.  I shall finish the soup I am making and deliver it to my friend to be frozen and taken out over the festive season when she has many meals to cook.  Then once Colin arrives home and has unpacked I shall follow him to our van storage place where he will make sure all is well with our motor home and then I shall give him a lift home.  Should then be time to collect Izzy from school, make her tea and have a bit of a natter to her, listen to her song she is rehearsing for Christmas and then let grandad take her swimming.

So ends another blog,  Keep well everyone and keep smiling! 

Love to you all xxxxx

An add on...... Oh my word the pain gets sooo bad in my head.  It is weird as I take  my trial meds at around two and am fine, well as I said  before always the reminder of  a headache brewing.  What happens then is about two hours of just being aware of my head and then WHAM, the headache from hell is back, so bad I can barely think, let alone move. After a couple of hours there then begins the pain in my right flank, we were told I may get this with the medicines,  Early evening I went to bed and tried to watch some tv to no avail., Colin kept coming in to check me and said he felt terrible as there was nothing he could do,  All I can do is take paracetamol but that is just like having somebody kiss your big toe if you have stubbed it really bad, the pain is still there.  It has been logged by my research nurse as she rings to check how I am doing.  Everything out of the ordinary for a ph patient must be reported and then it is carefully recorded for the research laboratory.  Now without a doubt I do believe I am NOT on the placebo but the drug.  I don't know which strength so if and when it works with patients they will adjust accordingly I guess.,

The morning after the night before.

So here we go, another morning where I  don't feel too bad, just a little reminder in my head of the headache so I shall get some jobs done whilst I am doing ok,  I feel sure my body will eventually get used to the meds and the headaches will stop, just takes time. 

Izzy came home from school yesterday with another head teachers award. When I asked why she had received this she told me for good "sitting"!  I said what, just because you can sit nicely you get  a reward?  She explained that no, it meant she had sat quietly and did not fidget when they were asked to do so and listen to the teacher.  She said the teacher told her she was a good girl.  I must confess we certainly never have any trouble from her, she is kind and helpful, particularly when I am going through my ph moments where she is always happy to fetch and carry for me. She is my shining star through all of this and I count my blessings that I can see her progress through her life, 

Today I shall bake an apple pie, take Roy his Complan and maybe go to the supermarket to collect another box for giving to the rotary,  Every year at this time they supply boxes for anyone who feels inclined to fill them and then they are distributed to the less fortunate. I filled one last week for a female.  You ring around the category so as to make it easier for them when they begin to open them and make up bigger boxes for the needy.  I put things in like shampoo, conditioner, body moisturiser deodorant and sanitary pads. Today I shall do one for household which will contain tins of food and some chocolate.  Next week will be for a child. I have never do one for a man and I don't quite know why, maybe I shall do this year. Then nothing of excitement going on today, Colin goes to his sketching class and I might even get to read a little of my book.  

All for now, go well xxx

That was the week that was.

The rhythm of the beat.

November 11th and trial date !  Yeah. Plenty of tests were carried out first and I was so pleased that when my ph doctor did the echo on my heart he turned to me and said that actually my heart was coping pretty well with the ph.  It still amazes me to hear things like this as it was so bad initially and also my levels were up by 11 last week from the time before my last right heart catheter  and we know rising levels are sooooo not good so don't quite know what is going on here.   It was very pleasing to hear the steady whoosh whoosh of the blood flowing through my heart, then when the echo moved to another part of my heart the steady thump thump of it.  I was quite pleased too as the rhythm of the beat sounded pretty good to me, a mere layman!  My next echo is in two months though my next Ecg. etc is in one month. I have another right heart cath at four months.    I took my first tablet and left with a months supply and my next four months appointments set up.  Let's hope it goes ok.  

As I was heading down in the lift to get my taxi home I was delighted to see one of my original nurses from my initial five week stay get into the lift.  Now I hadn't seen this particular nurse in almost five years, though we do Facebook each other. It was so nice then to give her a hug,  we had no time to talk though as the lift stopped on my floor.  I shall endeavour to see her in her office on my next visit and have a few minutes catch up with her if possible,  

Justice for my neighbours 

I said in an earlier blog that I was to be a witness in a harassment  case for an elderly couple.  They were worried about going to court but they need not have done so.  When we arrived the witness protection guy took us through to a room where we sat and were offered coffee and biscuits,  Here he went over what would happen in court and then took our mind of it as he regaled us with lots of tales of his sea faring adventures.  Then the prosecutor arrived and he told my friends that the best way forward was if the guilty party admitted his guilt and we just went into court for sentencing. I was not sure this particular guy would do so as it had come so far and he had his barrister in court,  However this turned out to be the case and so we sat in the court for his sentencing,  The result was an harassment order against him, a great legal step forward in the event of further  harassment   (and there will be because he takes drugs and drinks) this is when he causes the problems, and a hefty fine to his his wallet to the degree of around £1200 plus he has his own barrister to pay,  

His family were saying it was so wrong, he had done nothing wrong,  He obviously hadn't told them then that his mom had been taken away from her own home after he repeatedly beat her up, police pictures proved this and care workers reports,  He hadn't told them that at the same time he went to court for this he pleaded guilty to an earlier harassment case towards the same couple where he was ordered to keep the peace for twelve months, he managed three. Also he never told them that the lovely family living above him had moved out as they could not stand the harassment from him any more. I honestly think he is paranoid due to the drink and drugs. On leaving the court his cousin turned to me and called me a witch so the witness protection guy told her to stay back until we reached the room for our coats and then told her to leave the court.

This won't be the last time he upsets and harasses this family.  Their crime? To live below him and when he takes his drink and drugs he has these episodes.  There will be more court cases before he eventually decides, as the police said, that he really needs to live far away in a house miles from people!  The police have proof also that he once rang my husband 64 times in around six hours and me 11 times in the same period.  We just want him gone from here so we can get on with our nice quiet lives once more. 

Living with ph

We know how hard this is.  We all suffer so much when we have this disease.    It was nice then when I read a post shared from somewhere written by a ph specialist,  He said how it was important to recognise that we will have the hard times and accept help when we do.  We must remember not to push ourselves beyond our limits.  Things we can do maybe in the mornings we can't do later in the day,  I recognise this as I am not too bad first thing, though always heavy legs.  In the afternoon though I am an entirely different person with my body wanting to lie down and rest. 

It is strange isn't it that adrenalin can play a huge part in our lives,  Take for instance our ph conference last month,  Colin was shocked to see me on the Friday night acting like I had not even got ph, At home evenings are practically a no go for me UNLESS I have something to do,  That is when the adrenalin kicks in and I cope quite well really .  I may pay the price later but at least I get by with doing what I need or want to do So it was I believe the same for lots of my ph family at the conference. We had an amazing time but it took days to recover once the adrenalin wore off and we got back to normality.

It's hard to accept help. We struggle on with jobs we feel we need to do at home,  I know  I am being silly when on bad days I insist on maybe hanging the washing myself, it really takes it out of me and I suffer for it,  Why is it so hard for us to accept help offered by family?  Is it because we really don't want to be defined by our illness,  I do believe for me it is because I know my husband never signed on for this when he married me,  We none of us saw this future of a life with ph beckoning did we. We all blithely got on with our  lives never really believing a bad illness would hit us,  Certainly not a rare one,  Why would we get something like this, If we had to be the "rare one" why couldn't we be rare in that we won £40.000.000 on the lottery!  No we had to be rare in the bad way.  

We can't change what we have, we have to get on with it,  That sounds so easy to say but oh so much harder to do.  I do believe a positive attitude helps and I am thankful to have this,  I always believe the cure  is around the corner.  I am thankful for my specialists who tell  me we are living in exciting times for our disease, Lets keep phighting but remember to hand over the reigns when our levels are up and our reserves are low,  We need to acknowledge that were the boot on the other foot we would be happy to help our partner so we should happily let them help us.  In conserving our energy we are resting our hearts.  If we wake to a better day then do what you can.  I like to walk in the mornings when I can.  I  NEVER make arrangements to walk in the afternoon.  I know my body and my ph so well now.  Just remember to accept help and to say thank you for help received.

Absolutely Fuming

Months and months ago my mini was damaged by a car reversing back into me in a car wash, yes you read correctly, he reversed back into my mini.  We took down his details, though he was reluctant and away he went to work.  Despite ringing and ringing the insurance company for updates nothing has happened yet as he will not reply to the insurance company's letters.  This makes my blood boil as we are out  by £75 but even worse is the fact we have an insurance claim outstanding.  When we have asked how he can just get away with not replying we were told he may never reply!  Where does that leave us then, still out of pocket and still waiting for a claim in the system to be resolved.  We have witnesses too from the car wash but still nothing.  How then will he get more insurance cover, change his name maybe or go under a family members name.  I trusted him.  He seemed a nice guy, probably Polish, who worked at a local eating house as he had told us so he was at least honest in that degree.  I remember that I said on here before I  want to go cause a scene at his workplace  but won't.  Why is it the bad seem to get away with things but the good would be punished swiftly.  I am so angry at the injustice of this.  

France!

How very shocking to see the atrocities carried out in France last Friday.  All the innocent lives lost and for what, a bunch of radicals who want to change all our minds about religion, who want us to live in their world. Even if they managed their goal they would never be happy.  The truth is they just like killing for killings sake, hence as I said  above killing the innocents.  Quite when our world will be safe from them I don't know.  I do feel it is only a matter of time before we are targeted here too.  What makes my blood boil is often the people carrying out these attacks have been given shelter and education and money from the very countries they then go on to destroy. There will be pockets of these radicals everywhere.  We will never know where they all are. We may say hello to them in the school playground where we take and collect our children from school, brush up against them in the supermarket, say hello to them as they are our very normal appearing neighbours.  They don't have and special marks or ways we can see who they are, they just go about life in a normal way for the most point whilst behind closed doors plotting is going on to destroy the very structure of our society.  Death means nothing to them,  so sure are they of a glorious afterlife. The answer, I don't know and I sometimes feel we can never rid ourselves of these truly awful people who wish to ruin the lives of so many,  Will we ever feel safe again?  Who knows.  

Imagine too the people cut down at the concert.  All the joy of listening to the music was stopped as the concert hall became a Dante-esque vision of hell. People in wheelchairs were shot as they sat, one terrorist even went round to the victims and shot ones still moving.  Quite how one man can do this to another injured man is beyond my comprehension.  The more I read about all of this the more I despair about the world we now live in.  The band had just finished singing Who'll love the devil, who'll sing his song when the bombers struck and France's  bloodiest night outside of a world war was about to begin and was to last for almost three hours.  I can't imagine how it must have been for the people still alive to have to lay still, maybe beside a corpse and play dead as they kept hearing the sound of bullets aimed at those that tried to still escape.  Unimaginable horror.

It was so  heartening to see so many of us on Facebook ph website change our profile pictures showing their flag across our pictures as a mark of respect for France,  I have a love hate relationship with France after how badly we were treated over the foot and mouth situation, refusing to take our meat six months after we were cleared whilst they themselves had cattle riddled with it and some even say that the rot started with them. We cannot fish some of our waters and our fishermen have to look on whilst France are allowed over and take our fish!  I buy very little from France now.  I also hate the way they constantly shut down the air space every holiday season, close up their borders when they want more pay causing havoc.  We are no better in some cases as we too go on strike at peak periods in the airports,  All that said we must unite when we see such terrible things going on as the bombs and senseless killings going on. At the end of the day we are human beings united in the shock and horror we feel for our fellow men. No country should have to go through such things as these.  We know after suffering several times over the years the horrors that have been carried out on the innocents.  We still suffer over the bombings in London when other radicals destroyed so many lives on the Kings Cross underground.  This has to stop.

I just opened my paper and saw that twenty bombs have been dropped by the French on certain centres where the activists live and recruit their bombers.  It said there was panic in their city and electricity and water supplies have been cut,  There are also reports that one of the very dangerous terrorists was stopped and questioned by the French after the attacks, allowed through and is now believed to be somewhere on the run!  It won't stop him, he will just begin again, it's a merry go round in the worst degree.  I despair. 

Yes she did it, no fluke.

Last week I posted on Facebook that Izzy, just gone five years old, swam without arm bands.  I did wonder if it would be a fluke and we would be back to them this week but no, not at all. We were taking care of her all day Saturday and overnight so decided to take her to a hotel we frequent often on these occasions,  They have an enormous pool and she loves it.  Into the pool she went  with no arm bands and she swam on her front and her back!  She has a long way to go before she can represent England in the Olympics but at last we can say she can swim!  The sheer joy on her face as she swam past me was amazing, I am so proud and what a great start to try to keep her safe around water, as well, of course, the pleasure she will gain from being a swimmer.  Well done Izzy, 

My daughter collected Izzy and  gave me a lovely bunch of roses to say thank  you.   I love flowers and was just about to throw away a bunch that were past their sell by date so how lovely to have a replacement for them.  We don't need a thank you to take care of Izzy as she is such a good girl and lovely to have around but they were appreciated nevertheless as it showed we were in her thoughts.

Well enough from me for today,  I am going to have a lazy morning, maybe do a little shopping,  I have pottery this afternoon so I shall pace  myself.  

Hope you all have a nice day and achieve all you intend to try to do today, it's so hard sometimes I know,  Remember to do what you can and rest when you can't!  No point in pushing ourselves to the point of exhaustion, we don't get Brownie points for that. 

Carole. xxx