Friday, November 23, 2012

the 500th Issue.

Its Dermatomyositis.
so we have met the first milestone in my daily journal. It was on Saturday the 2nd July 2011 at 7.20 that the first edition of my daily journal was posted on my blog. It was 6 weeks after being diagnosed and released from  Hospital that I decided to journal my life with Dermatomyositis. I knew very little about the disease and knew of no other person that suffered from it. Living In Portsmouth I was lucky in that I had family and Friends around to help me through those early days and after spending 4 weeks in hospital on a feeding tube I admit that I was frightened and did not know what the future would hold for me.

In that first month when I started to write my daily journal I was getting on average 20 visitors a day and now I am averaging 120 visitors a day and that number is increasing. I also found a lot of helpful advice on the various facebook groups especially the Myositis Ramblers KIT Group among others (links to these groups are on the left hand side) and have also made many "Myositis facebook  friends" from around the world "as this is a public blog I will not name them in person" but you know who you are.

I have also joined the Myositis support group based in Southampton and this year in july I went to the conference up in southampton and met others who have one of the forms of Myositis, some of them I also knew from the Facebook Groups, and am looking forward to the 2013 meeting in Oxford next July.

Medicine Time
Anyway back to today and here I am with the 500 th Edition, who would have thought so much would of happened in those last 16.5 Months, I have had set backs, but the Dysphagia is now 90% better than it was, I still Suffer from Raynauds and I now have a Reveal heart monitor fitted to record my heart beat as I had problems with an erratic heart beat last February/March. but I am right down on my medication and now take 15 mg of Methotrexate on a Friday, 5 mg of Folic acid on a Monday and 15 mg Prednisolone on Alternate days so that is a massive improvement, although my leg muscles are still very weak at times. I had to sell my house as I could not negotiate the staircase safely so am now living in a 1 bedroom ground floor flat which is much better. I still have a carer come in mornings to wash my face and neck and comb my hair as I still have problems reaching above my shoulders although that has improved and is still improving.

I am still keeping my Myositis website ( Myositis in Focus ) up to date every few weeks and have set up my "Myo Man Dreams" comic strip facebook Page although I don,t seem to have much time to spend on that. I have my week organised pretty well and have specific days for shopping, Medical appointments, etc so have settled into living my live with Myositis the way I want to live it not the way the Disease wants me to.

well todays journal is different from the normal as I wanted to look at how much has changed since I started to write it. I have no plans to stop writing it and hopefully the readership will grow and hope also that I can bring some kind of Insight into my live and at the same time put a smile on a few faces. So Tomorrow I will be back talking about my day so until then I will leave you with a couple of Pictures of the floods that we have had here along the south coast over the last day or so and they are expecting more over the weekend, luckily we have not had any on Portsea island as we are a very flat terrain here. 
Along the coast in devon

Along the coast in Dorset

so until tomorrow Bye Bye

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