RIP SALLY -- THANK YOU

To be honest this was going to be my penultimate blog.  I felt there was little to say, it has all be said so I was going to leave at the end of the year, Not the ph community but just the blogging.  However I would lose many of my friends who read my blogs, sometimes upwards of 2500, sometimes  less.
So I have decided to continue as long as people are willing to read them. Bless you all for the comments you write, it does keep me motivated to continue.  

Sad death of Sally Kinney Maddox

Sally lost her fight and sadly died just a few days ago at the beginning of December. For  those that knew her, either in real life or as a supporter for people with her disease it came as a huge shock.  Many people were writing of their devastation to lose such a strong lady who had served her time as a ph patient trying hard to bring awareness.  This was a huge blow to the PH Community as a whole, as indeed the loss of any one of our ph friends.  Sally died in Atlanta aged 49, way too young. She was one of the PHA's Periwinkle Pioneers, a select group of individuals responsible for advancing care for individuals with PH and helping to change the history of this disease.

Thank you Sally for what you did for ph.  You served our community well.  Rest in peace.

Distressing post

On our ph facebook page, only seen by members and their carers so we can talk about our disease, emotions etc away from our loved ones we saw an awful post.  This was a lady who lived outside of the UK who feels so very distressed of how the medications make her feel, the constant cost of trying to get them through insurance and her ph is getting worse.  She wrote that she has done with ph.  Her meds are in the bin.  She has told her family who are distressed about it but she just wants it to end.

We know too well how awful the meds make us feel.  We know how we are treated like we are making up how bad we feel as we look amazingly well.  I for sure have stopped saying how I really feel, my answer is a simple one of "oh you know up and down days" and leave it at that.  Family and friends are not really interested in listening, and why should they be.  We would have told them of our struggles in every day living at the beginning and have learnt to get on.  I have begged some of them to do the straw test.  Pinch your nose and breath just through a straw in your mouth, climbing stairs etc. Doubt any one of them has even tried it yet this is OUR LIFE. I ask them to try to think that this is my FOREVER though my body has learnt how to cope with it.  There is no getting better from ph as there is with some cancers or some strokes.  Just different ways of getting on with coping with it.

Of course the messages were quickly put out to her to our ph friend to please think again.  Think about your family who will miss you.  One post even told her to think about how hard the end is with ph, being slowly suffocated by you own lungs.  I begged her to keep going, to stay strong cos I still believe we cannot be long away from a cure.  This was all to no avail and I worry about how she is now.

We are fortunate here in the UK to not have worry about the cost of our drugs.  We pay our percentage of wages right from day one of our first pay packet.  This all goes into a pot and means that health care is paid for for all, no matter how much money we have.  I know people from abroad think we do not pay but really it is like paying into an insurance policy as lots of countries do. They take out a policy and  pay monthly and you are covered. We pay monthly and are covered and we have no chance of avoiding it.  It is a separate tax we pay.  So for us here in the UK we have already paid our insurance premiums and are assured of our medicines.

There is nothing we can do for the lady who has had enough.  Sometimes at the beginning I felt this way too but just battled on and now I am in a fairly stable place.  Though I know my condition can change in an instant my goal is to remain strong, with maybe a wobble now and again!  I hope thee said lady changed her mind, fished her meds out of the garbage and can find herself in a stronger place.

And relax

Well for me anyway.  We have been busy making the house our home, putting up pictures and mirrors in the correct places etc.  Now at last when the day is over, the daylight growing dimmer we can have some time to just rest.  We take ourselves off to the lounge and sit down amid our squishy cushions with a drink in hand and enjoy the views from our huge window and look out on the world beyond.  We can we watch the sunset and the colour streaked sky and marvel at nature. A pair of binoculars always rests beside our couch and is used by many that visit here.  Our views are spectacular, even on bad days there is always something to see.  So are we there yet, are we settled.  The answer is mostly, the garden is the next thing to tackle.  I  myself am busy trying to find the correct furniture for outside on our closed terrace.  I have also promised Izzy as her bedroom is really big to make her a seating area with a small table and two chairs.

Last weekend she had her first sleepover and it went well but she said she wished she had the table so they could take a jug of juice up and lots of fruit in a bowl so that it was like their own house!  I have promised to deal with this and it will make a nice addition to her room.

The sleepover was fun.  The girls were darting about here there and everywhere as they played hide and seek, clearly Izzy had the advantage as she knew all the nooks and crannies to hide.  Both girls made us cards from all the things in Izzys' craft drawers.  The little girl that stayed said how she had enjoyed herself and thanked Colin for the "porige"  - her spelling - and that she loved it!  No mention of my spaghetti or my delicious apple crumble she ate with relish!   She loved all the fruit that Colin piles on top of porridge, kiwi, grated apple, blueberries and sweet cherries etc.  Oh well.  So will we do this again, of course we will.  The house was alive but once it was over we did appreciate the peace too.  

Celebrating 20 years of marriage 

Considering we were engaged three weeks after we met and married at four months after we met I think we have done well.  We are surviving coping with this terrible disease.  Our dream of living in Spain ended with a bang when I was diagnosed so that dream sadly left us and we sold up 12 months after diagnosis when we felt we were unable to use our villa as we had intended.  We have survived yet another house build and the move into it, a very very stressful time.  Still always a positive, we lived a lovely life in Javea and made lots of lovely friends, we DID it, we lived our dream.  We have survived the loss of most of our family and some friends who really cannot comprehend how poorly I really am and just cannot be bothered or forget to invite us to gatherings.   Through all of this we are standing tall  and proud.  I do all I can to trial for new meds, take on any study etc.  Both of us are determined to be on call to help in any way our ph community.  So this anniversary I did not think I would see came and went yesterday.  I hope we have many more still in the pot to come.  Colin is my strength, my rock, I am blessed. 

We did not make a song and dance about our anniversary, instead we took ourselves off to a lovely restaurant at lunch time when I am generally feeling my best and enjoyed a nice meal.  Later in the evening I had a small glass of bubbly and just relaxed and we talked about our earlier years of marriage. Would we do it all again knowing the problems that came along the way - in a heart beat. My life and the lives of our children changed a great deal for the better when I married Colin and he has proven to be the kingpin of this family, long may it last.  

Izzy has just been telling us how much she loves us all and who comes first on this list.. Happy to see an obvious  Mommy first, then an equally obvious granddad and joy of joys I come equal to Chris who is, I am happy to say and amazing dad to Izzy.  She said she has begun sometimes to call him dad and I am so pleased.  He certainly deserves the title as he is really lovely with her and has watched he grow over the last five years.  

This made me cry - And didn't they all look well

Click on the link below - Please keep the video on when you have seen and heard the song and children as you will then see another video about ph. Be aware, you just may have it without knowing..... yet.  We must bring awareness of this terrible disease.

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZIy4v34uvjA%26feature%3Dshare%26fbclid%3DIwAR0eK9pefpJ9950ZRqiFIUBv2Jh_Dp-7VK-kCNkVs5VXJfhX30ZBToxfS2g&h=AT1ucX8TbD5f4j2C6AmVmgUEA0LAhVLzTL6cCcmD-ZsGzlKZ94CpPKdzQjtTUS89C0EsinJ4hVVxRTyWqupXt7q8UhXd57gDuOJDk7hqS7HI2ERCFwFdhzBDF0U

I am finishing with this post that came on my news feed.   This is just one of the reasons we were asked to get our MP's to go to a meeting in Parliament to help to bring awareness of PH.  This touches people more than showing us oldies suffering. How terribly sad a note to finish on. So IF you are not yet on an organ donor register then please pease do this NOW.  just a click is all it takes.
Remember this could touch any one of you.  Please please always be aware of this cruel disease.  If you see posts asking for help then try to be there.  If you see people struggling to live with it then lend a hand.  Remember their disease is invisible so try not to dismiss them because you cannot see a broken leg, loss of hair from chemo etc. We matter too and these children on the video never had a chance to live.  

So once again warm love to all.  Your comments or likes as ever are appreciated more than you will ever know.  

Carole xxx