Hello all 😊
My name is Mandy
I’m 53 mum of 5
Nanny to 5
From Hobart Tas Australia

My year 2020 started out with an ear infection in late February, mid March it had got extremely bad with hearing loss, by late April I was in excruciating pain with infection getting worse, end April I had grommets put in my ears, 7 day’s later I was admitted to hospital to have iv antibiotics during my 14 day stay I had many scans blood tests and a biopsy on a lymph node that had become very red sore and swollen, on my 10th day they tried me on some iv steroids, which improved my hearing and my pain finally got bearable, day 14 I was able to go home,
Each day at home I got increasingly worse even the Endone I was one was now making me sick as well so I had to stop that, By day 5 I was in the worst pain I’ve ever had ( and I’ve had 5 children) I was sent back to hospital and Put back on I’ve prednisolone, the next day May 27th 2020 they had the biopsy results and some blood results back and yes I was told I have Granulomatosis something I had never heard of before
Then came more scans X-rays blood test
It turns out my disease has affected my ears/ hearing my sinuses I have narrowing of my trachea and nodules on my lungs
I have had 2 rubimax infusions 8 and 6 weeks ago, my hearing has gone from my left ear and I have very little in my right
I’m hoping hearing aides will help but can’t get them till the infection has completely cleared which we are finally getting there
Other than my hearing loss shortness of breath and fatigue I’m not coping too bad,
I do have very low and emotional days
I have not bought myself to reading much up on the disease just yet I’m not quite ready, but I think this forum is going to be a good starting point

Sorry about the small novel
It’s just good to be able to talk about it to others who may understand

Love to all
Mandy ❤️