Monday, 1 October 2018

September Update

Dear Readers,

Sorry it's been a while since I've written a blog post, so I thought I'd give an update on my life in September.

My legs are still agony as after starting the aspirin, I immediately found out I was severely allergic to it, in a way that my breathing was absolutely terrible! I could hardly breathe and so I was taken off it straight away! The allergic reaction means the Bisphosphonates for my legs has been put on hold! I have had to wait on these tablets, as due to this I've been feeling under the weather. I want to be feeling strong and good, so if I were to have any side effects or any positive reaction to these tablets, then at least I will know the difference.

Other than that blip, I've had a good month as in meeting up with friends and days out in London, so I've been very lucky with that. The bank holiday before September, Terry and I met up with my mates. It had been quite a while since we had all met up, due cancellations of illness etc but we finally got together and had a round of mini golf and went for lunch. I know I can always count on my friends and I couldn't ask for a better group of friends who are always there to support me and my challenges of PH.

My Mum and I went to London for the day and had Tea on the Thames. It was my Mum's birthday gift and she decided to take me.. a really enjoyable mother-daughter day. I really do love spending any amount of time with my Mum!

The next day I was very excited to meet Roshni. Roshni lives in India, but we met in London as she was over here for a holiday. It was so good to finally meet her after I first chatting online through our PH blogging. Roshni and I both have the same kind of PH and it was good for both of us to chat everything PH and understand what each other have gone through and are going through. It truly was a lovely lunch and meet up and I'm so glad that the world of blogging and raising awareness had brought us together, as without the internet we wouldn't have met and been able to support each other through our lives of living with PH.

This month means it's back to school. Unfortunately I won't be returning to my job, which I absolutely loved as I had to leave due to the strain on my health, but I've decided to open up my own music teaching. I am now teaching a few hours from home and choosing my own times and the amount of people I want to teach is much easier for me.

Since giving up work, I have felt such. huge amount of guilt that I'm not able to work a full time job to help with the income. I am very fortunate to have my music skills and to be able to teach people the piano, cello or trumpet and I'm very lucky that Terry is so amazing and supportive through out this. Even though it's only a few hours a week, due to my PH, it makes me feel a little better knowing I'm helping out a little. As they say, every little helps!

Sadly the PH community has lost another PHriend to PH. Serena was loved by so many around the world and she campaigned so much to raise as much awareness as possible for PH. It is with her encouragement that I've done a lot of my own online campaigns. She will be sorely missed, but always remembered and a true inspiration to many. You can read about her amazing work and efforts for the PH community here.

So overall this month, I've had my great days and some rubbish days, but that's life right? I've ended this month on catching the dreaded cough and cold going around at the moment! I'm currently on antibiotics, so another reason for not starting the Bisphosphonates! Hopefully I'll shrug it off quickly and get my mind focussed on my trip to Rome!! I am so excited for this conference in a few weeks and I can't wait to raise awareness for PH and represent the PHA UK and speak in front of over 180 heart and lung specialists from around the world. What an honour!!

So as we go into a new month, I hope it'll be a good one and with lots of great events happening for me, I know I have a lot to look forward to and be positive for. I have to remember blips are obviously going to happen, but I will get through them and move forward in the right direction.

October is also the month for PH Awareness Week UK, (22nd-28th October) so I hope many people will join me in that week to raise lots of awareness for PH. I will actually be in Rome in that week, but I have prepared 3 videos for this week which will be released Monday 22nd, #PHWednesday 24th and Friday 26th. I will try and join in as much as possible, but I hope I will have done my bit by sharing the videos that will be released during that week! 

Also as part of this awareness, I have started a new online raising awareness campaign called, We Are PHighters - I know it'll take some time to build but my hopes and aims for this project is that many PH'ers will get involved and share their PH story. This website/blog is dedicated to PH stories only and I hope that people will read and be inspired by the stories people tell of their PH journey. So please if you have PH and are happy share your story, then contact me on any of my social media or email

Now to enjoy a new month...

Thank you for reading!

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