‘Listen to the Music’

Hi everyone. We had a very successful World Aspergillosis Day and managed to spread the word. It was lovely to see people and organisations from around the world tagging Aspergillosis Trust in their posts.

We now have Rare Disease Day on 28th February.

So many people in the world have a rare disease and it takes on average 5 years to reach the correct diagnosis so it is an idea time to bring all of them to the forefront.

I have Addisons Disease and Aspergillosis both are regarded as rare diseases. Most of you will know that regularly read my blog that I was fortunate that I had a mum that had been treated for months in a quarantine hospital for TB in the 1960’s with no benefit. I got ill with a collapsed lung when I was 7 mum insisted I had tests for Aspergillosis as that was her eventual diagnosis. It was found that I had the allergic type that caused my severe asthma. Mum had cavities so hers was CPA. Purely coincidence apparently!

I have decided that nearly all of us with a rare disease are very resilient. I asked the question on our support groups ‘What do you do when having a bad day’. Everyone said something positive. Most like me resort to playing music loud occasionally with dancing (breathlessness allowing) Some go for walks others read or do something constructive likes crafts. Don’t get me wrong we all have our bad days. I must admit I have days where I just tell my husband it might be best to leave me alone for a few hours and he understands. I would be lost without him as he just knocks on the door of my craft room with cups of peppermint tea every so often.

So look out on twitter from the 21st February because Aspergillosis Trust will be posting using the #MyRareDiseaseTruth which are quotes from people with Aspergillosis.

I have had a busy week. Hubby had 2 hospital appointments and I have a video appointment. Hubby had an angiogram and echo to rule out anything wrong as he has been getting pain and high blood pressure. No results as yet. I had an appointment with a specialist pharmacist to make sure I had enough of my medication as there has been problems. I also found out that the course of Ciprofloxin had made no difference. I feel okay though so not going to have anymore antibiotics except my inhaled ones for the time being. If I start to feel rough I will contact someone.

Three card orders went out so I am up to date with all my orders so I will start making Christmas cards as I never have enough stock near the time.

My book this week is Heartstone by C J Sansom. I seem to be into my historical novels at the moment. I am enjoying this even though it is a big book.

We have been enjoying our films of late. We have recently watched The Dig and The Resistance. Both worth a watch if you have time.

Well I have had my vaccination, which is great but I have also had another shielding letter. Just have to keep my fingers crossed that with all the vaccines it won’t to too long before some kind of normality. Must admit I would love to see some of my family and be able to give them a hug. Also I was hoping to have a spending spree in a garden centre for some new plants. You all know I waste so much time in the garden bee watching!

Remember to watch out for all our posts on twitter for Rare Disease Day on the 28th February

Take care and stay safe. x


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