Giving up PH for Lent - 40 days without, great job.

Giving up PH for Lent

On opening my Facebook page I read a post by our very own Catherine Makin, a young girl with this disease.  I note that she said as it was coming up for Lent where it is customary to give something up for 40 days she has decided to give up PH.  Obviously very much tongue in cheek but wouldn't it be great.  Imagine if just for a short period of time we could live without this disease.  I am sure most of you would be with her on this one.  I myself can't really imagine just how it would be to breath with healthy lungs.  I think I would feel quite heady for a time as my body gets  used to having all that oxygen flowing freely around in my blood.   Great idea Catherine, pity we can't do it but thank you, it certainly made me have my first smile of the day.  

R.I.P - Karen Farminer

A post by Jez, the husband of Karen hit us all with a huge shock on Friday.  He told us of the death of his wife that afternoon at her exercise class.  For those that knew Karen, either by meeting her in person or talking to her on Facebook the news was so unexpected and it took some getting our heads round it.

Karen was quite a force on the ph forums and spoke at great lengths to many who asked advice.  She was never stinting in the time she gave to anyone when explaining or sympathising etc.  A ph fighter for almost 30 years there was little that Karen did not know about her own form of ph and so consequently could answer many queries and calm many a persons worries when they asked her the question.  At the same time she did not make herself out to be the oracle, she would often give advice but follow it by saying expert advice should be called for and the advice acted on.

It is fair then to say that Karen was loved, looked up to and admired by many of us here in the UK.  The horror of her death has hit many of us badly {myself included}  of course because it was the last thing anyone believed would happen to Karen.  Our thoughts go out to her family at such a sad time but I believe Leanne, Karen's daughter, said the correct thing.........She said she was going into work as it is what Karen would have wanted her to do.  Though it will be very hard for her she has gone on to do just that.  Leanne knew her mom so well.  We in the world of ph knew Karen but obviously never as well as her family.  Seeing just what Leanne wrote though prompted me to agree and to say to you that yes, of course our world has been rocked, of course it hurts like hell to lose such a force on our forums and of course we are scared about who it will be next..... human nature to feel and think this way. However I must say I agree with Leanne.  Karen would not want the world to stop turning.  She herself saw many deaths due to ph over her 30 year span of having ph.  She didn't give up, give in or lose faith that she would live to see another day.  Karen would be telling us all now to stay strong, don't despair and above all else we need to keep going!

Karen saw many new drugs come on the market in her 30 years of this illness.  Her medicines changed for better ones as and when the need arose.  Remember she fought for 30 YEARS!  Now if that isn't a great legacy to leave behind then I don't know what is.  Now we too will keep going, change meds as and when we can for the latest better drugs and keep as healthy and stress free as we can until the cure.  We must do this for ourselves and for Karen, to show we can follow her lead and remain strong no matter how many odds are stacked against us.  Rest in peace Karen, the ph forums will be a lonelier place without you xxxx

An update is that the Coroner is not happy with the reasons given on death certificate and wants a post mortem.  I am sad for the family that this delays the moving on process.  

Jane Taylor

We have had news that Jane Taylor is very poorly in intensive care.  Her lungs are badly damaged by another disease and on top of this the infections that are going around have hit Jane.  We are asked to NOT send private messages, though we can of course write to her on the thread her husband made.  It goes without saying that we all wish Jane well and a speedy recovery.  I believe that yesterday things were moving in the right direction ,though she is still very very poorly.  

My bust ...... again

Well here she is in all her glory, though not of course finished.  Now remember she is sort of a caricature so of course her neck is not in proportion and her face is not the prettiest.  On going into class last Monday I just obliterated the face I had done, cheek bones, brow and all and began to rebuild her.  Considering I am a complete novice who until this class had never worked with clay, even plasticine and play doh were beyond me I consider it is not too bad a job.  She will look totally different again in a few weeks time when I come to paint her.  I want brown hair with highlight in for her and a lovely coloured blouse.  So much fun.  Not sure quite what my next assignment will be but I know I have things to paint yet and I want to make a couple of bowls so maybe I will just concentrate on these before I move ahead of myself.

Wherever you may be son .........

My son is 35 years old today.  How the time has flown.  I remember the day of his birth so well yet can't remember what I had for lunch yesterday!  I have no idea where he is in the world right now.  His delightful girlfriend Anna is treating him to a few days away/   It may be abroad but maybe not.  It was a secret.  I know he wasn't told where he was going.  Wherever you are son have a lovely day and know that I am thinking of you.  You have given me many headaches and heartache over they years but the joys far outweigh all of these.  I am proud you are my son.  

Hitting my pocket ... ouch!

Izzy, my grandaughter has been taking swimming lessons.  She does pretty well but is reluctant to get her face wet.  Everyone who swims knows we need to do this.  I have used bribery, yes I do confess, bribery to try to get her to get her face wet.  Talk of new dollies seemed to impress her but obviously not enough to make her go under for long enough and with her eyes open.  Grandad has many times had his goggles on in the house and she hers whilst they played games of diving to get her used to them but to no avail.  I decided to change the prize.  Now I certainly do not advocate a prize every tine she achieves something, far from it but this was such a stumbling block for her regarding swimming.  She can swim very easily on her back and quite a way on her front, armbands were left behind long ago but we needed her to move on a stage.  The bribe was a bird that talks and sings and answers questions.  Result. yeah she dived down four times and each time picked up the object.  At last we can move forward with this oh so necessary learning curve of swimming, well done Izzy.  You will read these blogs along with the private journals I write way in the future and see just what it meant to your old grandma!

Waiting our turn, oops.

I attended the warfarin clinic yesterday and had not made an appointment as I went a day early.  The result meant rather a long wait as obviously all that come after you go in before you if they have an appointment.  I was getting rather bored and indeed was not the only one as the resultant piece can tell you.  A gentleman sitting not far away from me was nodding off, I was watching his head slump and then jerk awake with a start for quite some time.  Taking my eyes off him for a minute as I was then talking to the lady next to me I heard a cry and turned to see the guy was slowly falling to the floor.  Well it appeared to be slow but of course it wasn't.  The cry had come from the lady sitting next to him who had tried to stop his fall but to no avail. He went down with quite a bump and on hitting the floor woke with a cry of pain and astonishment.  Of course staff came from all directions and a chair was brought in to put him in whilst he was wheeled away to another department next door to check that he was ok.   Another fifteen minutes went by and just as I was thinking I would not find out if he was fine in he walked.  Oh the relief as he was quite elderly and I feared a broken hip or some such thing.  He smiled and actually took a bow and asked if we all enjoyed the floor show!  What a trooper he was.  He was then immediately escorted into the cubicle for his blood tests, whichever they were.  I do hope he feels well today as often the following day after a fall we feel all the muscles ache and bruising comes out etc.  I hope I see this gentleman again in clinic, we will certainly have something to talk about. 

Well enough from me now, the day begins with exciting things such as washing etc!  I shall then however walk down to the Art class with my hubby and continue on down the Hebble Trail, a beautiful place to walk and then catch a bus back up the hill when I reach the bottom.  I hope you all have a super day, we need to live each day filling it with many happy things. 

Go well my friends and thank you for taking the time out to read this blog, it means so much to me.  

Carole xxx