* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Wednesday, November 2, 2011

It’s 4.30 am and I’m learning.

I’m learning (against my will) about the many different morning bird noises.  I've given up on trying to sleep.

I’ve had a major fail in the sleeping department.

I take full responsability, I threw my sleep hygiene out the window and sat up late typing up my list of symptoms, medications and updating my medical history. Pages of information that would put most people to sleep.

My mind is whirring and I can't seem to meditate it away.

 Today I'm off to see a rheumatologist. Lets call him Dr R.  It’s an appointment I’ve had for about 3 weeks and initially I wasn't keen, really what can another doctor do except tell me I have me/cfs and need to rest.

That was before the rituximab paper was published.  I now am incredibly excited to  have an appointment to see someone who knows about rituximab and actually prescribes it to people for, another auto-immune disease, rheumatoid arthritis (RA).

Dr R. was involved in the introduction of ritixumab into Australia for the treatment of RA.  So for him (I dare to hope) it’s not just another medication but actually something he believes in.

Despite all this, I know deep in my soul that he is not going to whip it out from under his desk and plug me in. 

I know it's not going to happen, but my heart won't stop hoping.

So it's no wonder my mind has been spinning out of control all night long and I found myself wondering what if...   and if  ….and ….. then…. I’d….. they’d….and we’d…. and that would be great.

The best nights sleep I never had.


  1. Ooo Sarah, what did he say????

  2. I'll write a post about it because he made a lot of good points all round.

    Such a lovely man, sigh.

    In a nutshell about the Rituximab. He said it was a very good drug and for the RA patients he has it helps most but not all of them. He had met with some other doctors to talk about the rituximab paper and he knew all about me/cfs and didn't believe in GET/CBT (such a relief - will post more about this later). He basically said that if there was an opportunity to participate in a trial, it would be good to do it.

    So now LargeDad is keen to start knocking on the local universities doors...

  3. Sounds promising woo hoo. LargeDad is clearly a honey. Looking forward to reading your post when you're up to it. : ) BTW Are your parents internet users? I'm getting a lot out of the parents Facebook page that Sue set up...just the support is lovely and one also learns from other's experiences.. Just a thought....

  4. G'day Sarah - well it sounds like the appointment went well!

    Isn't the search for doctors who "get it" hard? It's something I have struggled with and it continues to be a struggle.

    I envy you the parental "knight in shining armour"!

  5. Hi Annie,
    I'll pass that info onto Mum, she isn't very keen on facebook, but it would be good for her to get in contact with other carers.

    LargeDad and the internet, that's quite funny. He declares himself to be complete a dinosaur in that regard. (chortle chortle chortle)

    He is suspiciously good however at finding his way to boat websites...

  6. Hi Displaced,

    More like a knight in paint splattered board shorts and deck shoes. :)

    There are some amazingly informed and wonderful doctors out there but also sadly some that are living in the past as far as me/cfs goes.
    Good luck with search. Are you on facebook?

    There is a good group (well lots of good groups but this is one of them) :


    where you might find some fellow Sydney-siders and some doctor recommendations.