Well who would have thought it. For many many months I have struggled at night with very aching ankles. I have no idea why, I believed it was a sort of hang over from when I got neuropathy from trialling DCA. I never knew what to do, just got on with it. However a recent post was shared and it said nobody knows why this works but it does. The idea was that you go to bed with a bar of soap near your feet. They said lavender but that was so the smell was pleasant. I opted for simple soap as that was all that was in my cupboard. Not really expecting much I popped it at the bottom of my bed and hey, who would have thought it ........ TRULY no aching ankles. Was it mind over matter, who knows but I don't care, I hope it continues as it was so good to not have this pain.
I know I see many posts about restless legs syndrome and this "cure" is supposed to be for this, however it works for aches too. Please try it and let me know if anyone else gets relief from this oh so strange cure. The power of the mind I think will have a lot to do with this but in all honesty I never expected it to work. I kept on moving my ankles and waited for the dreaded ache to return but it didn't, amazing. Thank you to the person that posted this.
Testing ahead for study
Received a call from the research team. It seems the iron study is on for me. Apparently this entails quite a lot of testing over two days, would appreciate anyone on it to tell me something of this as still awaiting my letter. However I am told they need to find me a hotel for two nights! I would prefer to come home if I am not to be in hospital but I am sure there is a reason behind all of this. So I am pleased, something that will maybe help me to head back up the board in this game of snakes and ladders we are on.
The viagara is now back in stock and so mine should be with me tomorrow. Scary time for any of us on this medicine. Hope we never get so close to having none again. The news now is that they are short of ambrisenten! I am OK with this though as I have almost three weeks supply and am assured the new sock will arrive before then. Quite what all this has been about I do not know. Hope all will be well in future, so stressful for us all to be told supplies are low.
Many many thanks to Patricia Nelson who on reading my post offered to express some of hers to me, it just warms my heart to read and see how much we are like a family and take care of each other. Thank you Patricia, so lovely of you, though now not necessary it pleases me to know you would have gone to such bother. xxx
Result
The table saga ends here. After a lot of work from the head of the team at the shop we bought our table it has ended with them GIVING us the table we borrowed from the shop. Before we accepted it Colin worked on the table and we discovered that the marks on one of the feet came off very easily with special furniture polish. He then worked on the table top. All marks off except there is one slight dint in the side, not noticeable really unless you look as carefully as we did., practically with a magnifying glass!
I took over a huge very beautiful bunch of flowers and some chocolates and biscuits as a thank you only to find that the manager is away from the shop for a couple of days. The assistant told me she had spent days working out a satisfactory conclusion for us and so she did. She deserves an accolade, what a great person to head the company. He did take and send a picture to her of our gifts, I hope she knows how truly appreciate all she did for us.
Remember and take note
http://johnpavlovitz.com/2016/02/29/on-the-day-i-die/
Again a post that came up on my news feed. We all live with the knowledge that death awaits us. I don't just mean ph patients but everyone. How often when somebody has died do we wish we could ring them, go and visit or just see their face one more time. I think this share is so profound and so meaningful. It deserves to be seen and shared again. Please please take the time to open the link, it may may you think and change one or two things going on or indeed NOT going on right now. How I hope everyone opens the link and maybe shares it with their family and friends.
MarcMary Dyer
Well what a way to go! I opened Facebook today and saw this so encouraging news!! This lovely lady trotted off to see her specialist, mine too, with some home baked cakes for them. She had been feeling very light headed recently and so dreaded the news that her levels were rising. After a long and tiring day having an MRI and RHC she was told the news that her pressures are officially NORMAL. The meds had done their job so well. Now it was decided that she was on too high doses of meds and she is being taken off one of them. Of course she knows that she is not cured of ph but for sure her life will be so much easier. She will return to clinic in six weeks time to see if her light headedness has been resolved with the reducing of medications. I am so pleased to read this and I am sure you all are too. There will be much jubilation going on in their house right now and rightly so. How lovely to end this blog on this amazing news.
Always have hope, without hope we have nothing. Go well my friends.
Thank you for reading. Please share this blog as I want everyone to read the amazing good news of MarcMary, it is so encouraging and that is what we need to do, give support and encouragement to all.
Much love
Carole xxx
The viagara is now back in stock and so mine should be with me tomorrow. Scary time for any of us on this medicine. Hope we never get so close to having none again. The news now is that they are short of ambrisenten! I am OK with this though as I have almost three weeks supply and am assured the new sock will arrive before then. Quite what all this has been about I do not know. Hope all will be well in future, so stressful for us all to be told supplies are low.
Many many thanks to Patricia Nelson who on reading my post offered to express some of hers to me, it just warms my heart to read and see how much we are like a family and take care of each other. Thank you Patricia, so lovely of you, though now not necessary it pleases me to know you would have gone to such bother. xxx
Result
The table saga ends here. After a lot of work from the head of the team at the shop we bought our table it has ended with them GIVING us the table we borrowed from the shop. Before we accepted it Colin worked on the table and we discovered that the marks on one of the feet came off very easily with special furniture polish. He then worked on the table top. All marks off except there is one slight dint in the side, not noticeable really unless you look as carefully as we did., practically with a magnifying glass!
I took over a huge very beautiful bunch of flowers and some chocolates and biscuits as a thank you only to find that the manager is away from the shop for a couple of days. The assistant told me she had spent days working out a satisfactory conclusion for us and so she did. She deserves an accolade, what a great person to head the company. He did take and send a picture to her of our gifts, I hope she knows how truly appreciate all she did for us.
Remember and take note
http://johnpavlovitz.com/2016/02/29/on-the-day-i-die/
Again a post that came up on my news feed. We all live with the knowledge that death awaits us. I don't just mean ph patients but everyone. How often when somebody has died do we wish we could ring them, go and visit or just see their face one more time. I think this share is so profound and so meaningful. It deserves to be seen and shared again. Please please take the time to open the link, it may may you think and change one or two things going on or indeed NOT going on right now. How I hope everyone opens the link and maybe shares it with their family and friends.
MarcMary Dyer
Well what a way to go! I opened Facebook today and saw this so encouraging news!! This lovely lady trotted off to see her specialist, mine too, with some home baked cakes for them. She had been feeling very light headed recently and so dreaded the news that her levels were rising. After a long and tiring day having an MRI and RHC she was told the news that her pressures are officially NORMAL. The meds had done their job so well. Now it was decided that she was on too high doses of meds and she is being taken off one of them. Of course she knows that she is not cured of ph but for sure her life will be so much easier. She will return to clinic in six weeks time to see if her light headedness has been resolved with the reducing of medications. I am so pleased to read this and I am sure you all are too. There will be much jubilation going on in their house right now and rightly so. How lovely to end this blog on this amazing news.
Always have hope, without hope we have nothing. Go well my friends.
Thank you for reading. Please share this blog as I want everyone to read the amazing good news of MarcMary, it is so encouraging and that is what we need to do, give support and encouragement to all.
Much love
Carole xxx
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