Friday, 29 April 2016

My "get up and go " just got up and gone!!!!

Hi everyone, so sorry for worrying some of you.  I received a few private messages saying I had not been on for a while and was I ok.  First let me assure you that I did all my work for the admin side of the Pulmonary Hypertension Society.  I would do this in the night when I often awake.  The people wishing to join must have a response a.s.a.p. we feel so I do that without fail every day.  If I am not going to be able I tell Paul and he knows.  Paul too informs me if he is going to be away and between us we always have it covered.

It has been a funny week this week, rather stressful too and I must confess it all seemed to be a bit much, not my Facebook friends but life in general.  My legs have been wobbly, how I hate this side of ph and I still have three weeks and more until I get my 24 hour heart monitor.  I keep reading about how exercise is good for us and of course I do know that it is, heck I began walking with ph and could cover 11 miles from time to time.  Not now though and this saddens me as I had formed a walking group for the less able bodied and for the time being it has been shelved.  I am truly hoping we can begin again when my meds have been adjusted, or I get back on the line.  

My most stressful time began when Roy had his fall, I mentioned this in my last blog.  Things went downhill fast after that.  As you also know the following day saw us at the hospital with Izzy and her very badly cut lip.  Any of us hate to see our little ones hurt and the stress it caused me was to send me spiralling down the abyss of ph.  

I managed to go for a coffee with Roy on the Saturday and I could see he was visibly worse in his condition, he could barely hold himself up so I insisted we headed off home and helped him to bed.  Rather a case of the blind leading the blind as I could not wait to get to my bed either.  Colin was away with the motor home so I had nobody I could call on to help should I need it but I fortunately did not. Of course I have friends but we know how we are,  we hate asking for help.  It is great when we have the push our partners give us to get up and start the day.  I love it when I have a real reason to move my body but there was none other than to check out my bosses house as they were away. I love doing this, being a part of this family and this house for so many years it always feel like coming home  The gardens were gorgeous and the weather lovely so I checked all was well and walked around enjoying nature at its best.  so I was very very lazy.  

On the Sunday after church and checking my bosses house again I just went straight home.  As I had not been well at all over the last few weeks I had sadly declined an invitation to Archies christening.  I just didn't want to accept an invitation I may not be up to using on the day.  This was a real  sadness but I was so frightened that at his christening I had a "do" or went  "off"  so I decided the best option was to decline.  So it was that there was nothing that needed to be done so it was an easy option, being lazy on a Sunday afternoon!!  I did think about Archie and all the people I would love to have seen so  think perhaps  I was a little depressed too for not being with them all. 

 The phone rang at 5.00 and I answered it to hear Sue, Roy's  daughter asking if I could go up and give her some advice about Roy, her dad.  Of course I headed straight up.  The place was a mess.  He had such bad diarrhoea and Sue said she had been constantly cleaning it up.  I was concerned as I knew he had not had any antibiotics after his terribly bad fall and was worried about an infection.  We called the out of hours doctor and was told he would get back to us in two hours though in truth it  was almost four hours before one came,  The doctor was very nice and quickly assessed the situation and said he needed hospital care so an ambulance was sent for,  This arrived very swiftly but it took some time to stabilise Roy (in fact all wasn't stabilised despite all their efforts) and they decided they needed to just move on it)  His blood sugar was ver very low and not even two tubes of high glucose could bring it up.  He was severely dehydrated too and they, as indeed I feared for the worst.

A long night in the A & E before a bed was found and after an examination the doctor told the family that there was little hope.  He was an 87 year old man whose kidneys and heart were shutting down.  I know we can say he had a good innings but it was so sad and bought home to me all about both my mother and fathers death so starkly that I sort of went into melt down.  He was put on massive doses of infused antibiotics and drips to deal with his dehydration but the toxins in his body were massive.  The family were told that the next 48 hours would be critical.  Well that marker came and went and I would see a rise and fall in his condition.  Yesterday I talked to him whilst they took blood from his wrist, we know how painful this is as the needle goes straight into the main artery.  He was so busy taking he didn't notice it so I was pleased about that.  

The family were told again that there was very little time left now so of course  I came home and left them with Roy only to be rung a few hours later by his grandaughter with the jubilant news that the blood tests showed that he was fighting the kidney problem and things were looking up.  Indeed the Doctor said Roy would be drinking champagne in his home in Menorca later in the year.  My mood immediately lifted. 

Of course though I love Roy dearly nobody can take the place of your parents and the gloom I felt and the very real loss of mine was just so much to the forefront in all of this, it was like I was grieving for them both and my brother all over again.  The news that Roy may make it after all helped to lift my mood a little.   

  Then the best thing happened, the door bust open and there was the sunshine in the shape of my Izzy.  She was staying the night due to her mom supporting her boyfriend at the funeral of his grandad.  She lights up my life with her lovely manner and loving ways.  We had a talk and cuddles and she built lego with grandad, read a book with me, ate her meal, had a bath and bed.  My gloom was lifted, I felt revived again!  

Now I am sitting here looking out of the study widow at the snow coming down so thick I can barely believe it.  I shall go to visit Roy again shortly and hope to see him looking a little better.

My next blog will be more in my usual style but I just wanted you to know I hadn't been poorly, had not gone away on holiday but was in the abyss we all sometimes visit when we have ph!  I am due back at Sheffield for my next infusion of the study ferritin in June and then we go off on our cruise.  I truly am so looking forward to that as I just love cruising.  Never in my wildest thoughts would I have ever believed I would be saying this.  I thought they would not be for me, full of boring people who sat and sipped cocktails all day but no, none of it, we have fun on the cruises and I love that there is a taster for further trips in the ports we call at.  So for somebody who said no no never when cruises were mentioned I have been on around 15 now!  Roll on..

All for now, the hospital visiting calls but trust me I am back and feeling better in myself, just wish the wobbly legs would go away. 

Love to all and thanks for the private messages and the liking and sharing of my blog.  

Carole xx

Tuesday, 19 April 2016


How many times have we been asked this question when the doctors are taking our notes at the beginning of a consultation.  I know the first time I was ever asked this question, never before I got ipah, I was amazed to be asked and said well  YES I want you to try.  It made me wonder since I have had a few "episodes" if I felt the same way and would I answer the same.  My answer would still be yes please, do try.  I feel I have so much living still to do. So many memories to make that I will be able to leave behind for my family and friends.  

Once when I was in hospital a lady was in the bed opposite me and she was wearing a constant oxygen mask and her breathing was so terrible.  I overheard her being asked the question and her answer was no, do not attempt to bring me round,  She had a lovely family that would come in and paint her toe nails and do her hair.  She was younger than me.  One day I asked her why she had said no to the question and her answer was that there would be no point.  I often think about her and wonder if she is still with us, I doubt it though as I know how ill she was.  

I know how bad we can feel, I know I myself have at times gone to bed and told Colin I hope I don't wake up in the morning but then I wake and the day is different, I can do things, I can move my body, I can dress myself and get motivated. I also know too well how this can change.  I know there may come a time when I need more help, more hospital stays and the medicines will no longer work as can be the case.  That may be the time when I am asked THE question that I will say no, please don't even attempt to being me round.  For now though the answer is a definite YES, please do all you can, I want to live. I wonder how my other ph family answered the question.

How very true

Most of us with a chronic illness get asked the most stupid questions or get told how we can cure it.  Wishful thinking we can't.....yet, but here is a brilliant post.  Not sure who posted originally but thank you and many thanks to George Gaskin whose page I found it on.  Now George is our "resident" clown and I love to talk to him and when I saw he had posted this I just knew I really must share as it is so true and down to earth.  Just love it.  I bet George has been asked or told these things many a time as though terribly poorly with this disease it doesn't stop him living life to the full and having fun.  Some people will just assume there is not much wrong with him or tell him of the "cure".  
Please please if you don't open any other link open this one, the woman who does it is quite funny in her actions, brilliantly done: -

Monday morning

I was going to ring my local doctor at 8.00 to see him about a minor problem but to also see if he has had news of my need for a 24 hour monitor.  This wasn't to be as the morning took a very different turn.

Woke early and decided to go up and give my neighbour Roy his complan.  On setting it down on his trolley, {the one it took us one and a half hours to find)  I noted a load of bloody tissues on the trolley and on the floor.  Thinking he had a bad nose bleed I decided to look further and saw his arms.  Oh my word, not a slight gash here but almost all of his right hand from the middle of his wrist to his elbows totally open around three inches wide and on his left a huge open wound. I woke him and checked further and saw how serious this was.  I knew that there was  certainly nothing I could do for this.  He needed proper treatment so I told him to dress immediately, not drink, (just in case) and then got myself dressed.

Colin understood but was a bit upset as he worried about me and he knew I was running on adrenalin and would pay the price but what could I do, I knew Roy should have gone to the hospital sooner.  Colin had an important date with sand and cement and a sewer at my daughters so there was nothing he could do. The story with Roy is that he slipped off his bed and banged himself on the trolley going down.  Now this happened at 11.15 at night so he didn't wish to bother us!  Sadly he did himself a lot of harm as by the time we reached A and E the wound could not be put back, I mean the skin could not be brought together.  After a good clean and many many sterastrips and plenty of padding a bandage was put on both arms.  Now his instructions are to not get them wet.  He was told they will take weeks, even months to heal as his skin is like tissue paper and he has very little flesh underneath.  He is also sporting the most enormous bruise on his jaw where he hit the trolley also, how fortunate he did not break it,  the jaw I mean! Now he has to have a district nurse come in to change the dressings.  His dream of going to his other house in Menorca has gone for the time being so guess what we will be doing next ...........

New Kitchen

He has decided to change all his kitchen and maybe build some sort of wall to separate it from his absolutely enormous lounge.  I so agree and as we had an agreement that if he dies before me we shall buy the property he wants us two to get involved with the designers!  This should be very exciting.  We however won't be buying this property as I so long for a garden but I shan't tell him this.  I am to get two designers up and we shall talk over all that the three of us need in this oh so super kitchen he will have, can't wait and it keeps his mind off going back to Menorca, where to be honest he is really not well enough to take care of himself.  I must say here though that the thought of Roy not being in the world is too awful to contemplate so I pray we are helping with the plans for a kitchen he will enjoy for many years to come. As I spend quite a lot of time with Roy I do appreciate the needs he has with regard to the kitchen so I can be of some help to get one that works for him.

Here she is  My Lady

I have brought her home, she is fired and now finished!  I don't think considering it is my first attempt that I did too bad a job.  Colin and Mike when they saw it both asked if I had had help.  My answer was an emphatic NO, Helen directs but she will not make it or interfere in any way.  I know that there are many imperfections but it doesn't matter, I made her!!!!

Now I have bowls and a plaque to paint and fire and then I shall ask if  can make another as I have learnt valuable lessons and know where I went wrong on this one, would love to have another attempt.

What do you think now Tony?

Fruit for kids

Once again many thanks to the person that posted this.  How brilliant and how easy.  I have begun a campaign with Sainsbury's to do just this.  I have sent out two e mails to two different addresses and am now waiting for a response.  I tire of seeing babies as young as around eight months old going around in the trolleys with their parents chomping on a do nut. {the child I mean not the parent}  Lets start healthy eating early and leave behind the cakes and biscuits.  Perhaps also if this happens instead of collecting a trolley that has the left over packet from a bag of crisps a child has just eaten that its parent left carelessly in the trolley for the likes of us to pick up before we can use it we shall see instead half eaten apples and banana skins.  Then we shall do what we always dutifully do, pick out the rubbish left by the person before us and discard it in the appropriate bin, which by the way is right by the trolley park and bin it. The worst thing I saw was last week, a dirty nappy and no I didn't pick it out and bin it, I left it and found another trolley.

Was I wong, I don't think so

I got a bit of stick this afternoon from the family of Roy for not ringing them when I first saw Roy.  In all honesty I answered that I didn't stop to think, I was in shock.  My first instinct was to get him the help he needed NOW and so off we went to my local A and E.  I also never thought when we were being sorted out. Roy was in shock, I was very concerned and anyway phones cannot be used in this department so had I thought it there was nothing I could do, I was not leaving him to make a call.  When all was done and we were driving home I asked him he wanted me to call Mathew, his answer was no, I want to go to sleep and Mathew will be here in a couple of hours anyway. So I did what I was told, got him to bed and as safe as he could be with a drink and I know he slept.  

I understand why the family were upset but I did what I did for Roy and at the end it was his decision not to let his family know then.  However I explained all that happened and why I didn't ring and at the end Mathew understood and we were friends again!   I am certainly not trying to interfere with the relationship between them all, I just wanted to do the best I could for Roy in the circumstances.

Well another day is dawning.  Today I SHALL ring my doctor and I shall also go for my LFT and INR, so much excitement ahead! 

Hope the day goes well for you all.

Once again thank you for reading and a HUGE thank you for the likes.

Carole xxxxxx

Sunday, 17 April 2016

Sometimes it all gets too much

In all honesty it has not been the best week.  Standing for any length of time just isn't for me right now, the fear of fainting looms large.  I feel safe in my chair though so spend too much time just sitting,  all I want now is the knitting needles and yarn.   I won't let it beat me though, I know between my A Team and Colin and me we can beat this, I know we will find the answer and change/adjust accordingly.  The problem now is how long it will take to get the 24 hour monitor.  I am heading for the doctors tomorrow morning so I shall ask if they have received the letter from Sheffield (I received mine) and if they are moving on the request for the said monitor. We shall see.

The pain management meeting was just brilliant.  I didn't expect anything could be done for my neck as I had been told this by two different specialists as the operation I need requires anaesthetic so just accepted this and hoped he could tell me some exercises to help when my neck goes into spasms.  How wrong was I.  A brilliant doctor saw me and he is an anaesthetist really so why he was taking the clinic I have no idea but am pleased he was.  He got up all my x rays and MRIs  and was shocked  when he saw just how much "real lung" is left now, not that much I can tell you.  He was also very shocked at just how much I can do, well generally, just a blip at the moment.  He looked at my neck MRI and said he could inject it with something that hopefully will take away much of the pain.  He understands I can't take medicines containing opiates and feels this would be the best way for me.  I left almost in tears at the thought of cutting out a lot of the pain and a prescription for the heparin he wishes me to have five days before the procedure.  I will have to wait three or four months.  Pity it couldn't be sooner as it would be great to have this over and done with before we go on holiday but I can't complain.  I would ask for a cancellation as we live around the corner but of course I need to get my INR down to 1 before he will touch my neck so that doesn't work either.   This is something to be looking forward to so a great result. Severe spondalitus of the neck is certainly no joke. 

Colonoscopy  I have these yearly as I am what is known as a polyps farmer.  Sadly they always find a lot and most of the are of the type that MAY turn cancerous later so better removed than giving them a chance to grow,  I have no problems at all with the procedure, don't take any form of sedation and have a giggle with the staff in the room.  This time they didn't quite beat my last score of 9 having to leave it at 8 this year.  The problems I had with the whole things was having to go 32 hours with NO FOOD.  I take many medicines to try to control my ph and what with all these rattling around in me and no food to help to absorb anything by the time I was on the table I just wanted to eat a huge steak or a massive chicken.  I received my two slices of toast and milk after the procedure and very grateful I was for it too.  Home then to my bed I and I was certainly ready for it at this time.   

Drains and pesky waste pipes, ugh!!!!!!

Danielle had been having trouble with her drains and sewage actually spewing out so she rightly got in touch with an expert who after lots of taking of videos and rodding etc declared the drain had collapsed.  On then to the insurance company as she is insured for such an emergency.  One would have thought the insurance company would get on with it rather swiftly due to it being a health hazard but no, they needed to send their own guy to look and it would take around five days before he could do it.  We were all dreaming of the scenario of yet another five days with no drainage when it was decided Danielle and Izzy would move over to her boyfriends Chris's house.  The insurance company went in to the drains though an entirely different entrance and declared that the reason it was blocked is that they could see concrete down the drain.  Rubbish but non the less it necessitated Colin and Dave a builder both working hard on Saturday digging up the top of the drive and seeing just where this supposed concrete was.  There wasn't any and the blockage is further down the drain where we had been told before.  Colin and Dave put a new manhole cover in to make access easier for the insurance company and now they need to come back to look again.  

Whilst all this was going on I was sitting or laying in the room and getting to know the delightful Harrison a little better.  They had all to come back to Danielle's and beggar the drains as Danielle was working and Chris lives too far away to just jump in the car when needed re all this fiasco.  It was lovely then to be with Izzy, without her beloved grandad, as he was busy outside, so it meant I got a look in.  Harrison is a very lovely little three year old and by the end of the day he was actually sitting next to me with his head on my shoulder while Izzy was on the other and we were trying to solve a puzzle.   A delightful day was had by us all inside the house as I was getting the children to try to walk with books on their heads and play football with small balls and getting them caught in the bottom of the couch meant a goal and oh all sorts of silly things.  For me the day was brilliant.  Not so much for Colin who had worked all day and was absolutely filthy.  It is not everyone who can do this type of job but he just gets stuck in.  Home then for a lovely long soak for him then and a much needed rest before he begins work on it again on Monday putting back all the top of the drive!

Away days again

Colin is hoping to go away again next Thursday in the motor home.  I prefer to stay here and that gives him all the time he needs to take his photographs, walk and bike etc without worrying about getting back to the motor home for me.  My sister kindly said I could go and stay with her whilst he is gone.  Now she lives in a beautiful cottage in the delightful village of Heptonstall, the scene of many tv dramas etc.  I have to say no though as she has stairs, stairs and I have been alien to each other for many a year so no, thank you for the kind offer Gill but here I shall stay, surrounded by good friends, near my local hospital and less than two hours away for Colin to drive home should an emergency occur.

How pulmonary hypertension develops

For my ph friends this may be of interest or if not show it to your friends and family to give them some understanding about ph.  Just click on the link.

I shall finish now as Danielle and Chris along with the children are in the park opposite and about to come back here for a short while.  So looking forward to seeing them all again, a lovely family the four of them make. I feel blessed. 

Once again thank you for taking the time to read and for taking the time to click like or sharing.

Much love to each and every one of you

Carole xxxxxxxx

Tuesday, 12 April 2016

Oops - here I go again

Last week was the week from hell. After my time spent at my local hospital and the uti I honestly believed things would get better.  Not so as we were soon to find out.  Colin and I decided on a very short flat walk on our canal tow path to see how my ph behaved.  It did not, it let me down so badly.  Colin had to half carry me into a pub that was close by as my legs did not want to work and my heart tried to claw itself out of my chest wall.  Feeling very sick and very scared Colin brought the car to the door and got me home.  A ring to my specialist clinic ended up with me being told to go in and have some tests, so here we were again.

There was no clinic on as such so I did my usual walk test, ecg and bloods, and pressures.  Typical they all came back as normal "for me".  We were so frustrated as we wanted me to go "off" again so we could maybe get to the bottom of it.  Robin, my lovely specialist doctor took us into his "other" office, his working one.  Well we had to smile.  As he was walking us round to it it told us that he doesn't allow people into this office but he knew we would not object.  There were clothes everywhere, his cycling gear, papers strewn all around and files.  We could just imagine how his wife has to pick up after him, it was so sweet though that he knew us well enough to allow us into this private domain of his.  

As Robin was doing my heart pressure etc we had our usual banter.  He is so funny and so lovely.  At one stage when the tests showed nothing I said maybe I should go and live with him for a while, he smiled and said he would ok it with his wife.  Anyway the end result is that as there is nothing obvious to see that has changed he wants me to have a 24 hour monitor.  We agreed and now it is up to the doctor to sort this with my local hospital.  Colin and I have decided we shall do the very short walk again and actually hope the same thing happens, two really bad turns in a week is getting very scary.  

Why do I believe all this is happening.  I believe my pressures have risen.  We know our own bodies and I know the feeling I am getting are like the ones I have when this happens.  When I told a friend she asked how they could tell and when I mentioned right heart catheters she said why didn't they just do one then.  The problem is the tube going down into our lungs goes in through the jugular vein.  We do not want too much scarring of this vital vein so they are only done when the need is really called for.  However if nothing shows on the 24 hour monitor I feel that will be the next step.  So here I am, doing very little which so annoys me but I have a life to lead and so I certainly will not allow this to stop me from enjoying it.

The Mill

How many of you watched this series on the television.  It was all about life in the cotton mills and my friend Sue Reid wrote a book called Mill Girl and did some of her research for it here. As we are members of the National Trust we decided on Sunday to get out and about and chose this place to go. It is only thirty minutes from where we live.  The filming for The Mill was done here and what a fascinating place it is. Quarry Bank Mill is in Styal, Cheshire and is one of the best preserved textile mills of the Industrial Revolution.  It is now a museum  and a fascinating one at that. 

The mill still has the water wheel working and many many of the machines are now being used to show people what life was like in these mills.  I myself worked in one for a short time, though I was in the office.  I well remember having to go into the mill itself and the noise of the clattering machines and all the cotton dust flying around, certainly not good for lungs.  

This mill has plenty of history.  It was attacked in 1842 during the Plug Plot riots but it withstood all of this and stands proud today.   It is set in the valley on the banks of the River Bolin which provides water to power the waterwheels and was in a great position for the transporting of raw cotton from Liverpool.

Samuel Greg was left £30.000 pounds when his uncle died.  He decided to make cotton as most of ours came from abroad and he knew it would be a great business.  The building of the mill cost him £11.000 and the equipping of it cost him a further £15.000   

I could talk all day about this place, so amazing it is but I will tell just a little about the life of a child working here.  The children, around two thirds of them girls, were generally, though not always taken from the workhouses.  They were not taken from local workhouses though as it was felt they would run away back to their mothers so a great distance between them was preferred.  Girls were preferred more than boys as they believed boys to be truculent and troublesome!  

I went into the Apprentice house to see just what living conditions were like here.  We were shown into the school room where they received lessons after work for around two hours.  The subjects taught were the two r's.  Here the children were not allowed to be smacked at all, or in the mill.  Their punishment could be standing in a corner for 30 minutes holding a pair of dumb bells at arms length or having their hair cut off.  The hair was very precious to the girls and very well taken care of so such  a punishment was great.

The girls slept in a dormitory that held 60 girls.  They slept two to a bed and of course there were no toilets, just potties.  In the days of this mill being in operation the left and right hand distinction was made clear.  You used your right hand for eating food, etc and the left was used for dirty work, such as wiping your bum!  Straw was used for this and there was a big basket of straw in the room.  The only form of water for washing was the pump outside in the yard. However Samuel Greg was a clever and astute man, he knew that to keep the children in the best condition produced the best work.  He therefore had a doctor on site to care for any ailaments, indeed this doctor actually was one of the first to inoculate the children with the small pox jab after one of the children in the mill died from it.  Now it may well have been that he used the children as guinea pigs as the inoculations were far from tested to the full but no child died from small pox in the mill after that.  

Breakfast consisted of porridge, not gruel which is oats made with water.  no these children needed strength to do their jobs and their porridge was made with milk. Mixed to a very very thick consistency it looked awful  The children went to work and began whichever tasks were theirs and at 8.00 the breakfast was served.  It was made so thick as they had no plates or utensils.  The dollops of the stuff were dropped into the hands of these little mites and that was that. They were encouraged to eat as much as they liked though, not for them the tale  of Oliver asking for more.  Full bellies meant more work hence more fuel.  Lunch was the same except that this time there were vegetables chopped up  and mixed with these oats.  Dinner was a proper meal, most likely a stew but with meat and many veg.

So much did Samuel want his workforce to eat veg that when he later built a village for his workforce he made sure that they all had a garden that were to be used as an allotment to grow fruit and veg.

Children that ran away from here were fined.  Of course there was no money at all for these children till they reached the age of 18 but then they did receive a small wage and overtime.  Girls that ran away when returned were faced with their hair being cut off.  One boy who lost his finger and ran back to his mom said on being caught that he had no real reason to run away except he missed his mom.  He said the food was plentiful and there were no beatings as there were in other mills.  

I can't say more or you would be so fed up and just pass this by but read if you like it the articles on the web.  I was on my mobility scooter and the guy that showed us around the house was so lovely he always made sure there was a chair set aside for me.  On leaving the house after thanking the narrator very profusely he asked if I had seen the two television shows of the mill with Tony Robinson.  As you may well know Tony is well known for his "digs" and archeology so I told him no unfortunately.  He then said he would send me a copy.  How kind is that.  

On then to my trusty mobility scooter and home, very tired but so pleased we made the effort.  

Candice Pridden

I owe this girl a huge thank you.  The sister of our very own Stacie, Candice went on a diet and is doing so well.  She posts foods allowed, meals etc and to say they look and taste great is no joke.  Now I am not overweight, being with what is normal for me but non the less my clothes were beginning to feel a little tight on me.  As hopefully there is a cruise in the offing I decided to diet.  not being at my best at nights though when slimming world club is on here I decided to "plug into" Candice and she happily allowed me to do this.  Early days being just over a week, ten days to be precise but I have lost three pounds.  I want to lose another seven before I go away which is why I posted on here.  With you all seeing and watching my progress it will push me more to behaving myself, no cheating.

Ceramics again.

Right back to work with a vengeance after the holidays.  I was presented with three things to paint, the head, a plaque and a bowl.  As others were painting heads it seemed to be the best idea to do this as we could swap paints and brushes around.  I like mine, though I wish I could have done her hair a different colour.  However I promised Izzy she would have blonde hair but I have put a few other colours in so she is a bit over the top!  This is fine though as she is supposed to be a caricature anyway so any colour of hair would do.  I was worried about going to class as it is in the afternoon , this is not my good time but it went well and I finished her early and then came home.  I knew I didn't have time to paint any of the other pieces.

Cake decorating and Izzy

I bought a cake for Colin so he could give a piece to Izzy and her mom and Chris when they arrived with his card and gifts for his birthday.  I found one that you decorate yourself so I also bought all the gels etc.  Izzy was so excited when she arrived and I told her to hurry and wash her hands as she had a cake to decorate.  She said she hadn't known she would be doing this but set about it with gusto.  The result was a huge heart in the middle surrounded by different coloured circles and all the candles in the box!  she was so pleased and helped grandad blow them out.

Danielle told us that two days after arriving home from her holiday with grandad she began to cry.  When asked why she was crying she said it was because she missed her grandad!  How sweet.  Colin will be taking her away in the summer.

Panto booked, Peter Pan this year and there will be two more going.  This will be the very first panto for Harrison,  the son of Chris.  Izzy has promised to explain to him about how everyone shouts and to take care of him!  He has just gone three so a great time to start him going to these yearly treats.   Front seats of the circle go very quickly so we were pleased to get them as we booked so early. Though it seems a long time  until Christmas we know how time flies.

Heart warming tale to finish on.  I just loved this! - Follow the Link below: -

Not too bad a day here so we shall see what we get up to.  Hope you all have a good day, we must all live life to the full.

Tons of love to you all and thanks again for reading and please like the page when you have read it for me. Sometimes I only get three likes though I know over 100 people read the blogs, it would be super to have more likes!

Carole xxx

Tuesday, 5 April 2016

Feeling humbled by my Facebook friends

I was overwhelmed last week as to the response  received from all my Facebook friends.  I was feeling terribly ill and was indeed in a lot of trouble when I posted and could hardly believe my eyes when I saw all the messages of support coming up on my thread.  I expected maybe ten or twelve but there were over 100 responses.  What was also so humbling was that when I didn't get back to say how I had got on at the doctors I saw later that people had posted that they were worried as I had not updated what was happening.  It was so nice to think that so many people on my Facebook page cared enough to bother to write these messages, thank you one and all. The reason I didn't get back was that my doctors appointment ran into a hospital appointment and took up so many hours.  Fortunately for me the doctor at my hospital decided not to keep me in as he did not understand the condition.  His thoughts were that my ph meds needed to be changed!  How easy this sounds, not so simple to do.  My pressures were at one stage 192/164 with a heart rate of 122, with a heart rate so high no wonder I almost fainted.  I know for many ph patients this would be the norm, these pressures but they were not for me, hence the feeling very scared. 

Thank goodness he did not keep me in as if I stay overnight in a hospital my insurance for our soon to be on cruise becomes obsolete.  Yes we would get most of the money back we have paid for the cruise but our holiday seeing St Petersburgh would be gone.  I am doing my best to stay away from  overnight visits then.  My stay in the hotel when on the study does not count as I am being monitored and it is not a medical emergency thank goodness.

We have still not got to the bottom of this problem BUT it just could be that something bad was heading my way in the form of yet another UTI.  Quite how these infections can bring on the overwhelming feeling of being so poorly and being so sure I would faint I don't know but I accept this can happen. A six and a half hour wait at the hospital where I was sent to by my doctor resulted in no answers.  My local doctor was so shocked when my friend helped me into his surgery.  My face was the colour of beetroot and my eyes were just slits in my head.  He said he was used to seeing me bounding into his surgery.  A trip to the hospital with a possible overnight stay was called for he said so off we trotted, actually I was held up as my legs would not hold me up. Off we headed to the Ambulatory ward at my local hospital.

My bloods were taken after four hours and I was then told I had to wait to see a senior doctor as they had never heard of IPAH.  How often have we heard this.  Another two hours went by and by this time  I was so badly slumped in my chair even the sister in charge of the ward was concerned and helped me to a bed in another room.  The said doctor rolled in to see me.  If this was a senior doctor then there is much truth in the saying  that when your doctor looks young you are old.  I swear he looked to be around 21!  My pressures were taken and as these were now within the normal range I was allowed home. He said I must arrange to see my own specialist as he had no idea what he was looking for. Still having to be helped to walk by my friend it was home to bed and a good lie down.

Colin was away in the motor home with our grandaughter Izzy so I was adamant that I didn't want them to be disturbed.  This was a much longed for trip and I knew that with the help of my friends I would get by.  Sure enough I was visited three times a day and the phone never stopped ringing with offers of help. Friends from close by offered me help too, how amazed I was at just how many people were prepared to help take care of me.

I rang Sheffield, my hospital as instructed.  I dare not do any other as Marcmary Dyer said she would hound me until I did.  She said that there had to be something wrong for me to call for help as I was usually hard as nails.  Not daring to cross her I duly made the call and my appointment was for Monday at 2.00.  I then planned that if I was able to walk a little by then to go visit with Judith Holden, Patricia Nelson and Christine Fowlie who would all be on M2, my specialist ward. Alas this was not to be.

Colin arrived home with a very excited little girl.  I asked from my bed, I hadn't been able to get up properly since the episode on Thursday and it was now Saturday if she had missed me or her mommy.  She said no then added well I missed you grandma.  On seeing my shocked face she added, "well I didn't really but I knew it was what you would want to hear"  so we have a very diplomatic girl here.  The short holiday was a huge success and they are planning to do another one through the long school holidays.

Early hours of Monday morning I knew that I was getting the dreaded UTI.  I took a bath, pain killers but all to no avail, it slammed me hard.  When Colin woke up I told him there was no way I could go over to Sheffield, the thought of being bumped around in a car was a nightmare so I rang to call off my appointment  I am to ring them if my symptoms persist once I am clear of the UCI.

Colin was a star.  As I had been in bed virtually all the time since Thursday he stripped it all and put on my very favourite bedding, pure white with a heavy cotton thread count and nicely starched.  A clean bed, lovely white pjs and I was ready for a very much needed sleep.  I am feeling a little better now so hopefully once antibiotics do their job I will get back to my "norm".

Laura Parker

Today is the day Laura is to be laid to rest in Rotherham.  I had planned to attend this funeral, sadly it is not now to be.  The messages keep coming thick and fast and we see just how many peoples' lives this young girl touched.  I am sure her service will be moving but I  am also sure that there will be many tears of joy too as tales of what she got up to in her very short life is talked about after the service. She was a ray of susnshine right to the end of her life  so what better accolade.

Gem Cousins

Gem is currently having a three month holiday taking in Dubai and Australia. I for one am loving seeing all the pics she is sending back.  Typical of Gem though, she still finds time to search for things to help us with ph.  Her latest link is found here and it is very interesting.  The article suggests that people with damaged hearts could benefit from taking Vitamin D.  I am up for giving it a go.  Thanks Gem, so thoughtful of you to take the time out whilst on your amazing holiday to post this.  Hope the ph meds travelled well for you.  

Steven Baker had his hickman line fitted yesterday at Brompton and I hope he begins to feel the effects on his heart once the drug begins to do its job.  As he has a little girl he has much running around and playing to do with her yet, go well Steve.

Red Flag Pulmonary Hypertension Symptoms

Sorry I am not sure who posted this but it is an amazing piece to show just what to look for when unknowingly suffering with ph.  This just COULD get somebody to make their doctor listen.   Please read, it may well be your life that is being saved.  Here is the link: -

The Last Time

Found this and how poignant it is, we should all remember: -

All for now, my head has begun to swim again, time for sitting down me thinks!!

Have a good day and if you have liked anything you have read on here please like and/or share.

Love to all

Carole xxx