Awareness

Such sad news.  I wrote in a recent blog about a young man with many health issues and one of them believed to be ph.  He wouldn't accept it and wouldn't accept advice from his oh so loving girlfriend, She did research this disease and somehow found me and private messaged me about it.  She was at her wits end when she contacted me and we spoke at some length about him.  She asked which questions needed to be asked and answered at his next appointment as she so wanted to go with him and talk to the doctors.  I was expecting our next conversation to be about her going with him for his next appointment and where he was now headed with regard to more tests etc.  I was devastated to read this morning of the death of this young man!  His girlfriend is of course lost, she said it is the hardest thing she has ever had to deal with.  They were talking about having a family.  How my heart goes out to this young girl coping with this.  I feel so bad that I wasn't able to help more.  He couldn't accept that he was so poorly, that he could have this condition.  He didn't want her to find things out about ph, didn't want to discuss it, telling her he wasn't really ill. Even his family did not believe this girl when she spoke to them about the severity of the illness. Could he have been saved if diagnosed sooner, I don't know, but I do know that he closed his mind to anything really bad happening to him, despite all the warning signs. His girl could not have done more. 

 I will still campaign to raise awareness about ph.  I pray the doctors begin to take heed of our symptoms and diagnose us sooner. In the meantime I send much love to this girl, I won't name her but she does read my blog and knows who she is.  Her boyfriend was fortunate to have such a kind and caring girlfriend and she has the peace in knowing she was with him at the end.  There was nothing more she could have done for him but he had her love, support and loyalty right to his last breath.  He couldn't have had a more loving girlfriend.  

Right now she is lost.  As indeed we all are when we lose a loved one.  She is totally devastated.  I pray that she finds some peace in her life.  She has a lot to deal with sorting out funeral arrangements etc.  I hope she finds the strength to cope. It is such a sad place she is in right now. 

Wrinkles and crinkles

Izzy, our granddaughter told me that when we get old and have lots of wrinkles we have to die!  Of course she isn't wrong, we can't live forever but after her comment it did cause me to look frantically in the mirror at my face searching for wrinkles with a furrowed brow!

I try to teach her to be right and fair in the world and not to judge etc.  On going to the shop this morning she saw her first ever dwarf.  She was rather surprised as she had never seen a person with this condition before and said "grandma I have just seen a little person". I explained to her that we are all the same just with some people their bones do not grow so tall.  This satisfied her and how I wish we could live in a world where we are all as accepting as children about the diverse people and things we have around us everyday.  This would be heaven.

Cinderella 

We had tickets booked many months ago for myself, Colin, Danielle and Izzy to see the pantomime on at our Victoria Theatre.  Izzy just loves pantos's and so looks forward to them, this year even more so as it is the first time her mommy was going too.

As the day progressed it became obvious that I would struggle to get there,  not least as there is no lift and the stairs right now are not the easiest things to deal with.  We asked Danielle if she could see if Izzy's best friend could go instead of me.  Unfortunately it wasn't to be and so with a sad heart I saw them leave.  Colin said it was probably one of the best ever performances he has seen so I was really pleased for them all.  Danielle told us later that on reaching home Izzy was replaying it all in her bedroom for her! Hopefully next year I will be sitting with them all screaming "its behind you" once again. 

Awakenings

I was watching this film starring Robin Williams and Robert De Nero.  A true story it resonated greatly with me as the story centred around a man who had been lost to this illness for 30 years.  Robin Williams  played  the specialist who discovered the drug that brought people back into the real world after years of having this terrible affliction, one of being catatonic. Robert De Nero took on the roll of the main patient who after being "brought back" for a while so to speak the drugs then seemed to cause problems.  Knowing how he was going back to the catatonic state and suffering terrible things happening to his body  he still insisted that the doctor continue and record everything that was happening to him. He  knew how important trials were for others.  So it is with all of us happy to trial drugs, take surveys, allow bloods to be sent to researches, take part in the genetics testing, do the cohort study  etc.   I know it can be a nuisance filling in surveys, having the blood taken, trialling etc but look  what we are all doing for the future of ph.  You should all be so proud of anything you do to let the researchers and doctors move forward.   

For every illness now cured there had to be researchers working hard, doctors getting the diagnosis, pharmaceutical companies prepared to spend the money on trialling drugs, patients willing to take on the trial drug and all that it entails.  If you can possibly find this film somewhere please try to watch it. It was a sad harrowing  and yet heart warming film at the same time.  I feel sure you won't feel you you have wasted your time.  It will also let you see just how valuable your input is for getting to the root problems and finding the cure.  

Great idea!

On buying our new wooden table and chairs we rang British Heart Foundation to donate our old glass table and chairs.  The condition is excellent, so we knew they would not have a problem selling and the proceeds would boost their coffers. We were told to ring a couple of weeks before we wanted them to go. I believed we would have to wait a while for them to collect and we could get rid of it a couple of days before our new one arrived.  However when I rang  they said that they were sending furniture and electrical goods to the valley a few miles from us so badly affected by the terrible floods. Would we have a problem with this or did we want it to be sold and the money put into the heart foundation. This was a great idea, so good to know our things were going where they were so badly needed right now.   I had felt so bad that I couldn't be any real use other than donate money.  I felt in this way we were going some way to helping even more. We of course also sent other things we had just sitting in the store room.  Again there was absolutely nothing wrong with them we just changed the colour scheme of our electrical goods.  All the things we sent will be very much appreciated.  Though no money will exchange hands for the heart foundation I feel this to be a very worthy cause.  I hope whoever is given our things can get back to normality quickly, though I fear it won't be the case. I was shocked when they said they needed our items immediately!  Would we mind, could we manage?  Of course we said yes, after all their need is greater than ours.  Our new table and chairs won't be here for another couple of weeks but I think we will be ok.  So it was that the day following my ringing them that two very efficient guys arrived and within minutes we had a big empty space where our table and chairs had stood.  

We did keep the floor protectors once they took the table and  we now  have Izzy running around going clickety  clack with them.. Very creditable horse hoof sounds going on around here today. . 

The Crying Game

I am not quite sure who sang the record, though I know my ph nurse Allison will without a doubt!  We feel it was Dave Berry but could well be wrong.  The song begins I know all there is to know about the crying game.  Well which one of us with ph DOESN'T know all there is to know about this.  I woke this morning, New Years day with really bad breathing.  I suppose it wasn't the ideal thing then to begin my day with a glass of champagne, in particular as I rarely drink but it did go down well with the scrambled eggs.  My breathing has been hard these past few weeks, getting worse day by day.  I am convinced it is the trial medicine so am sure that on Wednesday I will be taken off it.  However Wednesday seems a long way off to me right now when I am struggling so much.  I must confess to having a cry.  I am not super human, I try to always be positive and to that end I still believe with every fibre of my being that I will be here when the cure comes BUT.......... sometimes, just sometimes I weaken and cry.  Today was one of them and though I didn't cry for long I will admit to feeling a little, yes just a little sorry for myself.  

Wednesday before Christmas I had rung my trial co ordinator to tell her of my worsening breathing and my weak legs.  I was so sure she would say come off them as my doctor had initially told me he wanted me off them if no improvement in another week.  I was so shocked then when she told me to stay on the drug unless my oxygen dropped to 88.  Still I do as I am told and here I am still taking he meds.  It could well be that I can't now just stop the, it may be gradual.  

I am always trying to show to my family in particular that it isn't so bad, that it isn't so hard.  I don't want them to see all that it entails.  My children don't read my blogs so I can at least be honest on here. My family are so used to seeing me flopping around in my pjs as they are so comfy being elastic in all the right places.  Bras and waist buttons and zips constrict our already constricted bodies so as soon as I am able off come my day clothes to be replaced with comfy floppy ones.  I don't wear  the traditional ones though as I don't wish them to appear to be pjs, indeed anyone seeing me would think they were some sort of lounging suit.  I have three pairs of these and bought my fourth yesterday.  We never know when we will be admitted to hospital and I don't want to be seen in the normal type of pyjamas so need to have plenty of my type of these. So today will be a floppy pj day for sure.  I shall do nothing but finish this blog and then rest, rest and more rest.  Tomorrow will be another day, hopefully a better one and maybe my breathing will ease a little.  It is not the best start to the new year but I know it will get better, its just a blip!

So then here is the first of my blogs for 2016.  I wish each and every one of you a happy and healthy New Year.  Lots of encouraging things will be seen on our sites to do with research, new drugs etc. through 2016. Will this be the year of the final breakthrough, the one to conquer ph once and for all.  We can't know but we can hope.  

I thank each and every one of you for the love and support I have received throughout my illness. 2015 saw the ph website growing almost daily. Thank you too for the support given freely to others on our site faced with this devastating illness and their fears when initially diagnosed.  You have all gone on to become great ph buddies and help and encourage one another.  I am so proud of you all my friends.  

Take care, love always  Carole xxx