My story by Janice
In 2004 at aged 69 I was diagnosed with Diabetes 2 which scared me no end as I could only see insulin injections ahead and I don't get on very well with needles. I was told to exercise and watch my diet.
I was retired and was able to go walking every day but after some months I found myself becoming breathless and having to stop to catch up. Eventually I realised this wasn't right. After seeing my GP she referred me to a Cardiologist and in 2004 was put through the usual tests. I was due to go to Australia and had to wait on results as it was not definite that I would be allowed to go. I was more concerned about my trip than what was actually wrong. ( I was allowed to go). I was put on Cilapril and Metoprolol and although I could tolerate the medication I lost my appetite and 8kgs in 8 months enough weight loss that friends passed me in the street.
I was then seen by the Rheumatologist and in 2005 was admitted to hospital for Iloprost infusion. I was then diagnosed with Scleroderma with PH as a secondary condition. Apart from a period at the beginning when I was easily tired and family cooked meals and did my shopping and arranged various things to make life easier I have now reached a plateau health wise.
The down side to all this is you don't look ill and someone wearing a bandage would be given more understanding.
I feel very fortunate that this illness waited until I had my family and my overseas trips and also very lucky to have a great GP, wonderful Cardiologist and Rheumatologist who are all on the ball. I know there will be no cure in my lifetime but hopefully it won't be long before there is one.