In one of my blogs from last week I posted as to how very poorly I felt in my last pottery class and needed help to get home. As a consequence I admitted that I just threw things at my plaque and didn't even bother to look at it when finished, I was just too poorly. However it was such a lovely surprise when I saw the result this week as it looked really good! Not dried or glazed of course but still, very very pleased with it. I won't see this one now though until the new term.
I am going to my Art studio to get some of my clay to bring home so me and Colin, plus Izzy can mould things with it this weekend for fun. It will stay fine if I keep it in plastic between collecting it and using it. Looking forward to a busy Saturday!
Once the bowl was safely in place at my daughters Danielle went to empty the dishwasher. In doing so she broke a breakfast bowl. Izzy immediately went into the lounge, picked up my bowl and took it to her mommy saying "oh its alright mummy grandma made you a bowl, you can use this". Needless to say my daughter did not use my bowl for her breakfast cereal. Not bad for a first attempt?
Collabro
Watching Katherine Jenkins and some of her guests were the above group from Britains Got Talent, what a lovely group of young men singing amazing songs from Les Miserables, so pleased they have proven to be more than a one off wonder. One of my favourite musicals and they are singing it superbly. How lovely to hear the harmonious voices of these guys, I hope they continue to do well.
Missing a loved one
Christmas frenzy is going on in shops and homes at this time of the year, Please take a minute out of your lives to remember those who are gone, who won't be sitting around your table. There will be a face or faces missing from sitting around the tree and accepting or handing out presents, it may be family members who have died through lots of circumstances and your pain of missing them will be real but please all remember the members of our ph family too lost to this cruel disease, These ph members who lost their lives fighting this battle gave a lot of themselves to the doctors whilst fighting this disease, Lots will have been learned by watching the progression of their ph, All of this helps us today with new medicines developed through seeing how they coped with the meds they were taking, Just take a couple of minutes to think of all the families who have lost a loved one in this battle, they deserve at least that.
PH trial visit
On the 9th December I had my first visit since going on the tablet for the trial I am doing. This was a great time to be going as Laura Parker was actually staying on ward M2 so it meant I could get to see her and spend a little time with her. Laura is such a lovely lady and has had some issues with the water retention. She was going to have a tap fitted so she could deal with this at home. How I hope it works as she has a husband and son missing her very much at home.
I was also fortunate to be able to meet up with Gem Cousins, though only for a short time and saw her new engagement ring, it looked great in the pictures but even better on her finger in real life, really beautiful. Gem is doing really well and looking amazing. She did her best walk test EVER so that is really pleasing to know.
Unfortunately for me I did my WORST walk test for years. It didn't give me any surprise though as I have been getting more and more breathless since taking the trial drug. The headaches that kicked in after ten days are way better now though, just a residual ache all the time with the occasional punch to let me know it is still around.
On talking to my specialist he thought I should come off the trial meds. We have no way of knowing if it is a worsening of the ph or if it is the trial drug. I am very tenacious though and said I didn't feel I wanted to come off the drug so soon as I would have let everyone down by not completing the trial. His response was that he was more concerned with me than any trial as the object of the game was to keep us as well as can be expected with this condition. Anyway after an in depth talk we decided that I would stay on the drug another week and see if the symptoms reduced or I felt much better. We shall see how I go on though I have to say I wish I had more oomph than I have now. I certainly want to wait at least until my next trial visit at the beginning of the year. We shall see, I am always hoping for an improvement as my body accepts yet another drug amongst all the others we take daily.
Lunch with my walking group
As you know I started a walking group a few months ago for people that wished to walk and make new friends. It was a group for people that couldn't run up and down hills as I certainly cannot do that. It turned out to be a huge success and I have made some really lovely friends. At one of our coffee stops on the walk it was suggested that we have a lunch together before Christmas and so it was arranged. What a super time we had, there was no shortage of topics to discuss and it is always amazing to hear about the differences we have in the things we like to do. I discovered that one of the group is a belly dancer, she is in her seventies! One of the group loves to decorate cakes, I am not very artistic in this field. Another one of the ladies loves to "mess about in her kitchen" and I bet she produces some great things. Her husband is always very knowledgable on cameras and photography so Colin tends to pair up with him and gets some great tips. Yet another member of the group works part time in a charity shop, good for her for putting something back into society. Our next walk will be next Thursday, just a gentle stroll and somebody else has come online and asked to join the group. It will be so nice and I have to say she can't be with nicer people as we all get on so well.
Izzy
Well here she is! So endeth the peace and she has homework to complete before we can get down to making anything with the clay. I have been looking around for things we can use as templates or things to make nice patterns so that she can roll them into the clay. I am really looking forward to this messy time around the ugly table we have! Cant wait for the new one.
Hallelujah at last!
Got a letter in the post yesterday and the guy who bumped our car has at last admitted responsibility for it. Our cheque will be soon on its way but as I said it was never about the money, it was a principle thing. I hated the thought of an outstanding claim never being admitted, hated the thought of it always being on our file. So once again we will be clear on all our insurances. Result.
PH new members
As always there are more and more people wishing to join the PAH society. This is both sad and pleasing to me. Sad because of course we would not wish this on anyone but pleased that they are looking for the support and encouragement that I know we all try to give them. Strength in numbers is great and it warms my heart when I see just how supportive you all are to people you have never met. It just goes to show that we are a true ph family, caring for each other across the miles and trying to encourage each other in our fight for a better life whilst we wait for the cure we so desperately need. I thank each and every one of you for all the care and support you have given me across the years, so much appreciated. To
all the new ones coming onto this site may I tell you that you will never be sorry you joined our group and never be scared to ask any question. One of us will have gone through it and know what you are talking about. Nothing will seem too trivial to go on this site. If you are scared or worried then just POST and you will receive support by the bucket load. Asking questions is what it is about and replying to people that ask the questions if you know the answer is great, even if you don't then please offer support to those reaching out for it.
Enough from me, my grandaughter now needs attention so I must go. Will update you next week about my progress or maybe deterioration since the trial drug.
Have a lovely weekend and thank you so much for taking the tine to read my blog. Remember that if you look onto the right hand side of my blog you will see other blogs posted by incredible people who have helped so many in this fight, just click and read and then add them to your list.
Love to you all
Carole xxx
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