Wednesday, 3 October 2018


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

Are there really any ups to be had with PH?

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

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

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

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

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

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

Getting there.

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


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

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

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

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

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

Carole xxx


  1. Thank you Carole for yet another wonderful glimpse into your world. We appreciate it, and it matters, it really does. :)

    1. Hi Unknown! Thank you for comment. And it matters so much to me that people take time to comment, very heartwarming. Xxx

  2. A lovely post, Carole. I had not known about Serena Lawrence until she died, but her death touched me just the same. Such a vibrant soul, and such a PHighter!

    I am happy to hear that your house is ready for you to move things into it! At last! You must be so happy.

    Like you, I've found that PH is not all bad. There are many 'ups' to it even though people may think we are nuts for saying so! Hahahah. There are silver linings - we just have to look for them.

    Much love to you, Carole.

    Pat Goh

    1. Hi Pat, well you sure had an “ up” when you managed to have your op and cone out unscathed, so pleased about that, Yes we need to search for positives, even on the hardest of days. Xx

  3. Good blog Carole though I wish you had not had to write such sad news of Serena. She was a lovely person it's just terrible that she had to go.hearing about these losses is becoming increasingly difficult to do.Love to you post pics of new house xxxxx

    1. I know they are hard to hear but she was so well known globally and was so lovely. Yes around two,weeks for the,house, excited. Hope,you are doing ok. Xx

  4. So sad about Serena. Can't wait to see the pictures of the house! What a good Grandma, buying the new coat for Izzy!

    1. We always buy their winter uniform coats cos they are expensive on top of uniforms. Anyway it is something we like to,do. Not long now for pics. Carpets being fitted next week xxx