‘If I Had A Million Dollars’

Last week I started my blogs with a Barenaked Ladies song and it made me look up my old discs and this song came to mind https://www.youtube.com/watch?v=B4L3ls_6UYg

It would make my life easier if I did but it would not cure this awful illness.  There are some things money can’t buy.  I was thinking what would I do with the money.  The first thing that came to mind would be to pay someone to drive me around.  I am the driver in the house and I know sometimes I don’t go out because I can’t be faffed.  I would meet up with more of the friends I have met through this illness.  I have got to know loads of people and I regard most of them my friends now not just acquaintances.  I meet them occasionally when we are all fit enough but if I have someone to drive me around I would pick them up and do a bit of fine dining.  We would have Aspergillosis Meetings in Michelin starred restaurants!  I would also chuck money towards research.  I don’t think it would last long in my pocket!  The imagination is running away with me again today.

aspergillosis poster + FIT logo1 JPEG

wad2019 at poster

Well tomorrow is the big day and I am busy organising all the lovely selfie photos everyone has sent (it is not too late) and amazing stories which I intend flooding social media with tomorrow.  The stories are so interesting as it is quite staggering the amount of people that get wrongly diagnosed at first but once on the correct treatment things improve.  That is why early diagnosis is paramount.

I have one more thing to add about my routine where my drugs are concerned.  My GP will not prescribe 2 of my medications Colomycin and Fungizone or all the other bits that go with it, water, sodium chloride, needles and syringes and a sharps bin.  So this is done separately.  It gets delivered to me every 2 months from a firm that is organised from Brompton Hospital.  Nine times out of ten it is a brilliant service so can’t complain but I have a cupboard of drugs and now have a spare fridge as the Fungizone has to be refrigerated.  I have also invested in a small portable fridge if we go away for a weekend or something similar.  With sorting medication and hospital visits, 2 lung doctors, bone man, heart, eyes and diabetes my life does revolve around being ill no wonder sometimes I can’t be faffed to go out.

Sounds very depressing but the majority of the time it is routine so I don’t notice it much of the time and even though most of the people I talk to daily have aspergillosis they are from all walks of life and we seem to have so much talent between us.  Pharmacists, Horticulturists, scientists, it shows that Apergillosis isn’t proud where it shows it ugly head.  All these lovely friends have turned their hands at other things when unable to work.  So many crafty people, writers, further education, singing.  It goes to show what a determined bunch we are.  So even though this illness can take over our lives we don’t waste a minute of it.

Join us tomorrow and spread the word.

Take care. x

http://www.aspergillosistrust.org

#WorldAspergillosisDay

2 thoughts on “‘If I Had A Million Dollars’

  1. Hello Jill, I was one of those people mis diagnosed. I remember my very first attack in 1991. Hubby took me to A&E, I was very unwell. There I was diagnosed with Hyperventilation Syndrome, GP gave me anti depressants and organised counselling. These attacks continued, had to take voluntary retirement from my job, stayed on antidepressants for 15 years. Worried the life out of my family. They were constantly asking what was making me so stressed. The attacks were awful, lasting months at times. Fast forward to 2008 when I was so ill I had a chest X-ray after convincing my GP that it did not feel like asthma. I had not got my coat off from getting home after chest X-ray, my phone was ringing. It was my GP, they had emailed my chest X-ray results and she thought I had TB and referred me to a thoracic Consultant, where after 3 months of investigation and steroids, I finally got a diagnosis of ABPA. It is still not under control to this day. However, I am hopeful that The Brompton Hospital will help me have a better quality of life than I have at the moment. Thank you Jill for your wonderful input on this site, we need it. Don’t know how you cope with all your medication regimes. You are an inspiration to us all.

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    1. Hello Rita thank you so much for your response. It is very scary the amount of people that get wrongly diagnosed before the correct treatment is given. Can I add your story to the website and it will help with our awareness campaign. I will keep everything crossed for you that Brompton get you on the right track and that you improve. Take care and thank you for your kind words. x

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