Information and Encouragement
We have been seeing newly diagnosed patients with ph on Facebook recently who are, and rightly so, unsure of the world of ph. Of course they always fear the worst, maybe it is because they have been researching in the world of Dr Google. Though we are all warned NOT to google ph I feel sure we all did. How well we wish we hadn't as just reading the so outdated research terrifies us. How I wish we could get rid of the old and just have the new, the encouraging data that is out there for all to see.
We need to remember that fifteen years ago very little was known about ph but that is changing fast. Now I am sorry if I am repeating myself a little from older posts but it hurts my heart when I read of how scared these newbies are, after all we have all been walking in their shoes. Here in the UK we have a Pulmonary Hypertension Society and we can join for free. It has an amazing wealth of information and it also has a ph forum which we can join and on here we can connect with people to talk about anything, ph related or not, share our fears and dreams and encourage others who are asking questions. I would advise anybody who is NOT a member to take up the offer of free membership. It may be that we feel we know all there is to know about ph, of course we don't, but the point is we can help the ones who know little, if anything about it and I feel we owe it to them to help as much as we can in answering questions and giving support.
Telephone number for Pulmonary Hypertension Society UK is 01709 761450
This is a number to keep in your phone books. The advice they offer is so helpful and they can get you onto the forums needed.
For most of us the beginning of the ph journey is hard, and I like to explain to others that though the journey can be really tough initially hopefully the medicines can help them get back on a more even keel. Now I know not all ph patients respond to the medicines and that alone saddens me. Even with the thought that new medicines are coming out all the time it does not make the ones not responding feel any better. I am always encouraged to read of all the research now going into ph and how it has come on leaps and bounds, in this way a medicine that does not suit one may suit the other struggling. Above all I really do believe positive thinking helps us and trying to stay strong, not always easy I know, but there is strength in numbers and we have, as mentioned above, the ph forum and our Facebook page where we try to help one another with this disease amd this hopefully helps us to cope. A better understanding of the disease, the stages and what the medicines do is always good too.
When we read of a death of a ph patient we all react with horror, sorrow and many other emotions. In every illness there will be deaths but by the very nature of our illness being so rare the death of one of our ph family touches us all so deeply. We are a small family and it hurts to lose a member in this way . Our hearts go out to family and friends who have lost a loved one to this disease. I have said before and I say again we owe these people so much. Lessons are learnt about this disease from the ones who lost the battle, we owe them All so much and we should never forget that. They deserve to stay in our memories. It is the very least we can do.
MarcMary Dyer has begun posting on Facebook now. Maybe she posted before but I just read her story of being so very very poorly but after 18 months she is actually going to night clubs again! Now if this isn't a story of hope and encouragement what is. Never despair. Together we are strong and can fight for a decent life.
More tales from our memory box.
When we were on our travels through Cornwall and Devon is is fair to say that sometimes I was very sluggish going about my activities! It touched a cord then when we went into a shop to see if we could find something to remind ourselves of this and also the fact that I eventually managed to do everything we set out to do. Well there it was! A slug made out of glass with huge eyes just sat there looking at me, it had to go in the memory box and so it did. Not sure how well the picture comes out but I think it is rather cute. 
Another memory in here is a very special memory. It belonged to a little boy, {long since a man as now in his mid forties}. It came out of a cracker he pulled whilst surrounded with family at christmas. It is just a tiny little piece of a train. He was only allowed to play with it for a short time as fear of it getting into his mouth was very much to the forefront of our minds. When he left I kept the train and over the years it was kept in a special box but when the memory box came into play it just HAD to belong in the box. If this person reads this I want him to know that he was never forgotten, always in my heart and head.
A colourful tiny mask rests in here, great memories of one of our many trips to Venice, I love this place and we knew it would just fit perfectly in the box. I love the colours and the hat is made of merano glass. Venice is well known for making this beautiful glass. They also do the most amazing masks and who could ever leave Venice without one. We bought a big one with lovely black feathers. It now hangs on one of our walls. It is a talking point when new people come to our home.
Colin has posted some pictures on here. Can you see the teeny tiny boxes for a dolls house. I mentioned before how lovely they are with jewels and scissors and mirrors, hairbrushes and perfumes in it. Now you can see why we love them. The pound coin is so you can see just how small they are. I love the train so much too.
Just everyday stuff!
Nothing exciting happened this week. I baked a christmas cake for my ex boss. In truth they are like an extended family to me having worked for them for around 24 years. It was a total different job to the one I had had previously but it worked and we built up a relationship built up on trust at the beginning to a real love for each other. We share each others good news and bad news alike. A nicer family you could not wish to meet and I am so proud that they are our friends and a part of our lives, I love them all so much. Not everyone can say that about their employers so I know I was very fortunate.
I took my neighbour, aged 86, out shopping as he was tired of seeing just four walls. All ph friends can relate to this. He had had a tummy bug and was confined to his house for days on end. It was awful that on leaving the supermarket his pants fell down. Fortunately he had a long coat on and nobody but us saw what happened but it brought it home to me how frail he had got, how much weight he had lost and how I must help him to build this back up. To this end I shall ensure he drinks complan, making it for him myself if I have to do. I truly love this guy and so want him to be with us for a long while yet.
I have been trying online to buy a book written by Sue Dietschmann. I am struggling with this I must say. I feel I shall have to go to my Waterstones store to order it. This book I know will make you cry but I must tell you newbies that it is rare for this to happen to a ph patient. Sue had a daughter who died at a very early age from ph. She was the mother of an 11 week old baby and there had been no talk or symptoms of ph. It was related to another very rare illness so not a straight forward ph. The sadness of Sue finding her daughters lifeless body bears no thinking about but this lady has touched me so much when I read her post. I want to get closer to her and I feel reading this book will help me to do this.
And so the end and hope you enjoyed my blog. If you did please share it. Raising awareness of ph is so important. If we can help any way we can we need to. If we can reach out and get another patient with undiagnosed ph read this and force the doctors hand to search further we must do this too.
Have a lovely rest of the week!
Carole xx
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