On a downward slide
I haven't been too well lately. Each day I wake and think that I will begin the ups of the roller coaster of ph but as yet it doesn't appear to be happening. I know my levels are rising so I had hoped that the trial I began would help to lower them but it ended badly and very early. I have since "spoken" to three others that were on the same trial and they too were brought off the trial due to breathlessness more severe than before beginning the trial and other issues. Unfortunately for one of them she still feels really bad whereas for me I certainly almost got back to where I was pre trial.
I am now playing the waiting game to see if I can get on my next trial. We did discuss it and indeed it was my specialist that said that as there was now nothing else for me other than back on the hickman line I could trial again. I go back to have talks on the 19th of this month.
Now I am not complaining about my health, indeed I consider that I do pretty well considering I have ipah but nevertheless we all want a good level of health and it bugs me that I do not. I get very tired quickly though not of the type that I can sleep. Just an overall weariness. It would be so easy to just give in and sit in a chair and do nothing but I try to do something every day. I am not talking about running marathons. It may be just a trip to the supermarket, out for lunch or to visit a friend but I am so looking forward to when we have the cure. I pray it will be when I am still able enough to enjoy the outdoor life such as we had when we lived in Spain. It would certainly bug me if the cure was to come when I was too old to enjoy it!
I have a cold at the moment and we with ph know that just a simple thing like this can make everyday tasks so much harder so I suspect that it is that that is the problem and I am looking forward to getting rid of the darned thing so I can move on. In the meantime I continue with the salt nasal spray {thank you so much for the recommendation Karen Farminer} as we cannot take over the counter drugs for our blocked noses. I am aware that I smell very much of Vic too as I am rubbing it liberally into my body. I had read that applying it to the soles of our feet and covering with socks was a great "cure " for coughs and colds but alas for me it does nothing but make all my bedding stink to high heaven of the stuff and produced a very definite compression in my legs and ankles.
What with the cold, the smelling of the vic and sometimes albas oil and an outbreak of goodness knows what on my face I look and smell a mess! I feel that somebody should walk in front of me with a bell shouting "unlearn unclean" so that people get out of my way as indeed it does appear that I have some sort of dreaded plague!
Oh well, on with another day and hope that this time the roller coaster has reached the bottom of its slippery slope and it begins the climb back up to the top with me in it.
My bust
Did this grab your attention? It was supposed to! Not that there is anything special about my bust but the one I am talking about is not mine exactly, it is something way better! I am busy making a bust in ceramics and I have to say that the hair at least looks really good. I have to work on the eyes and nose as they do look rather stupid even if I say it myself. { I am told we are not allowed to say stupid, we must say silly but hey ho ...} I would have posted a picture of it but I don't know if you will be able to see beyond the silly eyes and so I will wait until my next lesson in a weeks time when I shall rectify it. I have some clay here so I shall practice and practice and hope that I do a better job of it next week'
My teacher Helen is really good and directs me but she makes sure I do it myself. I did suggest that I sat at the side of her and watched her make it for me but she wouldn't! So at least when I do post a picture here you can be sure it will be all my own work. I shall post one next week and then begins the long process of it drying before I can paint it and fire it.
I have so enjoyed making this but once it is finished I really need to get on with making another couple of bowls, very easy to do as I have promised them to people. I don't know what my task will be after that but I can honestly say that I get so much pleasure out of these classes. Even when I feel rough and it seems an effort to go once I am in the studio and sat down with whichever project I am working on the time flies by. The friendship and camaraderie of the other girls is great and the sense of satisfaction I get is amazing.
She has left us!
We had Izzy staying with us for eight nights as her mommy, my daughter was going skiing. Now since Izzy was born we have always had a week or two when she has been solely in our care. We generally would take her with us on a cruise. My daughter is a single parent who works extremely hard to support herself and Izzy and for us it is so lovely that we are allowed this time with Izzy to make wonderful memories,
This time we did not go away, we stayed home as Izzy is now in school. It brought back so many memories of my own two when I was helping Izzy with her reading and I devised a way where she was learning without feeling pushed. I was so proud that when her mommy came home Izzy could show her just how much she had come on with this skill. Grandad was in charge of helping her with other tasks set out for her homework and between us I think we did a great job.
She is a very caring little girl and understands my limitations. Indeed one day when it was just too hard for me to cut up and eat food she was watching me carefully. As she saw me put down my fork with the words that I just did not have the energy to eat more she got down from her chair and held out her hand to me. She said "come on grandma I will help you to your bed" She then proceeded to lead me into the bedroom where she then instructed me to lay down and get some rest! The following day when I felt much better {mornings are alway my best time and the times when I get things done} she called out to me that I must walk carefully and take my time.
She was of course pleased to see he mommy on her return, especially when she was told that she now needs to take skiing lessons herself ready for her holiday skiing next year. One very excited little girl left us then to go home to where she belongs, with her mommy. The house seems to be so quiet now, though we still have her two days a week when school is finished until her mommy collects her.
I must confess though that it was nice getting the house back together again as she always had a project on the go or dollies prams or scooters all over the house! They are now back where they belong too.
Kath Graham - Author!
Many of my ph friends on here will know Kath, either personally or through her blogs or the work she has done to raise awareness for organ donation. She always said her wish was to write a book and she has done it! This is about to be published and the book is about her journey with ph, living with it and coping all the way to her at last receiving the gift of a heart and lung transplant and her recovery since then. This will be available to buy on Amazon shortly and is called LIFE IS FOR THE LIVING by Kathryn Graham. Below is a picture of Kath's forthcoming book, will send you a link when released: -
I am sure it will be a great read, though in places a little dark as we see her go through all the ups and downs we all go through on this journey. Not everyone is able to or fortunate enough to be given a transplant but Kath was one of the few who received her call and consequently her new heart and lungs.
I am so pleased that Kath catalogued her journey so well as she also shows all the aspects of research most of us are involved with when we have such a rare condition. We all act as human "research rats" as our blood is taken and sent away to be analysed for many things, genomes being one of them. In this way she shows that we all play a part in trying to find the answers so desperately needed to enable the researchers to find the true cause and to stop it in its tracks or to define which of us carry the gene that is the cause of one form of ph, that being familial.
So it is then that Kath has written a book that in many ways reflects the life of most of us living with this condition. It can give others an insight into just how hard life is with ph and what we go through to try to live a "normal life"
I have known Kath for over five years and we met at a conference for ph. We have kept in touch ever since and I have watched her health deteriorate to such an extent that I feared she may not be able to be transplanted if the call ever came. Fortunately the call did come and she received the most precious gift of all, life!!!!! Since then she has gone on to become an amazing ambassador for raising awareness about organ donation and will continue to do this task for us all. I am so proud to be able to call her my friend. I beg you to buy the book and read it. It doesn't matter if you do not have ph. There may come a time in your life, or the life of a loved one when you or they may need an organ, please read the story of how one persons life changed through this gift.
I can make a bet here that almost all who read the book who have not signed the organ register will quickly sign online after they have read it. Remember if you would take an organ you should be prepared to give one too. Put yourself or a loved one in this dark place where the only hope of a future is an organ, one given by a very generous person. not a pretty thought is to think that you too could be in this position. An even worse thought is that were you to ever be so poorly as to need an organ you would have to sit back and know that many many are being burnt every day when they could keep so many alive. Just reflect on this for a moment, not very nice thought is it.
I feel very honoured to know personally three writers now. Sue Reid writes book about history, usually for school children but I have said before grown ups love them too.
Another great author that I know personally is one called M Jonathan Lee. His books have been likened to Stephen King novels. He gets great reviews such as "completely compelling" and "I need more from this writer" to "I have never read anything like it"
Hazel Roberts who has sadly passed also wrote books and these can be found online.
Kath Graham now joins this list and I am so proud to be her friend.
All for now as it is around three in the morning. I need to see if there are people on our ph website who want to join our group so will do my admin now.
Go well each and every one of you.
Carole xxx
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