Monday, July 25, 2011


...well, that's it.

I've decided that there are going to be no more 'I will post more often' or 'I will post when' comments in my blogs. I always start out with great intentions meaning to do more frequent updates, but things always seem to get in the way.

Procrastination is a thing right?

So, what's happened since I posted in, when was it again? MARCH!!! Poo, I have been slack...

Umm, well, I've since had two more stays in hospital, one for increasing myopathy in the quadraceps and one a few weeks ago for whooping cough. I've also been in for a day for a muscle biopsy of the quads. I'm not entirely sure why they took so long to do one, or why they decided to do one now (other than to annoy me by putting me on crtutches for four weeks) but it pretty much told them exactly what they already knew. I HAVE ANTISYNTHETASE SYNDROME. Right, now that we've got that sorted, can we move on? Please.

Apparently not. Last month the genius who is taking over my case now that Peter Keary (my usual specialist) has gone half time in preparation for retirement, decided that perhaps my immunosuppression was causing the increasing myopathy and has withdrawn it. He has also decreased my Prednisolone to 7.5mg a day. The result? Well, I'm getting worse. The heliotrope rash on my neck and chest has become a bright red (sort of like sunburn), my skin has lost elasticity and hardened significantly. lung function is decreasing and I have developed other rashes on my stomache and arms. On the upside, I am due for a review next week by Peter, as it has been six months since my Rituximab infusion and I am due for another round. Hopefully, he'll take this oportunity to fix up the rest of the meds as well. I'm starting to get really tired of not going on while steadily getting worse.

As some of you will have noticed, I have subscribed to a service which will now post this blog to Facebook. If you care to, you can pop over to my wall and you should be able to find a way to subscribe to the feed there. For those of you who aren't my friends on Facebook, I think you should be able to search for it by name and find it that way. I figure this is going to be an easier way to let everyone know when a new post is added, instead of the old way of me having to let people know via other means. Of course, those of you without Facebook, or who don't subscribe, will be told the way you always have.

Hmm, I should look whether Google has an app to allow me to post that way too.


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