It seems like ages since I wrote my blog. It has been a very topsy-turvy year for me and it is still that way now. We had a great World Aspergillosis Day and I think we reached more people than ever before with our campaign. We then went on with Rare Disease Day. That sadly… Continue reading “Don’t Worry Be Happy”
“One Day Like This”
It is a good day today so I thought I would write to you all. First off a disclaimer – I apologise for any spelling mistakes I am a bit druggy. I came into Brompton on the 8th February and started my IV treatment. As most of you know I struggle with a nasty pseudomonas… Continue reading “One Day Like This”
“I Don’t Want To Go To Chelsea”
I was supposed to go into Brompton Hospital on the 27th January but it got moved as an urgent bed was needed. It suited me as it meant I would be at home for World Aspergillosis Day and my hubby’s birthday. Now the day has arrived. I still have to wait to see if there… Continue reading “I Don’t Want To Go To Chelsea”
“All Together Now”
Not long now till World Aspergillosis Day. Many of us with this condition have other things going on as well. I look after the Facebook Support Group (https://www.facebook.com/groups/777282226382870) and I am always amazed at how everyone copes and rallies around when someone needs a bit of help. In an ideal world, it would be wonderful… Continue reading “All Together Now”
“Hold Your Head Up”
It will be World Aspergillosis Day on 1st February. This year will be trying to bring to light to the world our concerns. We need new treatments, better diagnostics and even a vaccine. Too many patients have to wait anywhere up to four years sometimes for the right diagnosis. The delay in starting treatment can… Continue reading “Hold Your Head Up”
“Gonna Make You A Star”
And the star is Aspergillus. Sounds strange I know but we need to shout about it. As I mentioned before I will try and keep you all up to day with everything we are doing for World Aspergillosis Day. So far there have been a couple of videos completed. One with me! One with a… Continue reading “Gonna Make You A Star”
“Brave”
It is not long until World Aspergillosis Day so we need to get together and try and spread awareness and try and get the word out there that this hidden condition is life changing and can sometimes be fatal. It gets misdiagnosed and people can wait up to 5 years from first symptoms till feeling… Continue reading “Brave”
“Happy”
Well I did it! There were times in my life I thought I would never make it but I managed and feeling pretty good. I am now a pensioner! When I left NatWest many years ago I moved my work place pension because I joined before equal opportunities was a thing so if I didn’t… Continue reading “Happy”
“Here Comes Santa Claus”
It seems like ages since I last wrote my blog. I have been busy with hospital appointments and the Aspergillosis Trust. It is good being busy though. Medics4RareDiseases and Rare Beacon run a scheme every year called The Student Voice Prize. Medical students can be paired with a patient group and write an essay on… Continue reading “Here Comes Santa Claus”
“I Am The Walrus”
This is me at the moment. Trying to make sense of things. I feel okay but there seems to be a lot of things going on at the moment and the brain is all over the place. I broke a rib a while back and my bone doctor wanted me to have Denosumab but there… Continue reading “I Am The Walrus”
Jill 