I have had a shock…

I decided to try to find out how many people have the disease I have. It is not known but less than 1:2000 000.

Thrown up in the results was a book, My Life With Dystonia by Cheri Tannenbaum. Like me she is Ashkenazi Jew. Her dystonia has made her body very stiff, immobile and unable to speak although there has been improvement, I don’t know if this was with the help of drugs. Most importantly, she never had OPEN BRAIN SURGERY.

So the atrophy on my left side might have been totally unnecessary. All the pain it causes me….

I can’t dwell on this. It does me no good. But I am shocked to my core.


All the rare side effects…

Whenever I have been prescribed a medicine, even for short term use, I almost always have the rare side effects.

You know, on the information sheet, listed as ‘uncommon’ or other terms to express unusual. I get them. So I never read the sheet. That way I can’t imagine myself into having them. In this case, for me, ignorance is bliss.

I did check while I was breastfeeding my daughter. Mainly anti-histamines. I took no medicines during my pregnancy.

The last medicine I was prescribed was earlier this year. It helps my lungs stay clear. It changed my life, as I was getting so many chest infections. In the summer, I noticed rash on my face. It is that medicine. There were other side effects too, but I didn’t realise until I read the sheet. It was an ‘ah’ moment.

So I repeatedly get a rash on my face. Every time I thinks it’s cleared up, around three weeks later it starts again. I cause met feel icky, like things on your face do.

I’ve decided to stop taking it again. (I was taken off it and then given a child’s dose.) I will contact my doctor and go from there.

It seems there are no easy choices in life. But I’m breathing, I’m keeping well, and life is good. I’ve been going drinking with a friend. It’s nice to sit with a drink of any kind, and natter.