Saturday, 22 September 2012

The Nips Are Getting Bigger

Sometimes I wonder
What all these chemicals
Are doin' to my brain
Doesn't worry me enough
To stop me from doin' it agai-ai-ain
Wipin' out brain cells
By the millions but I don't care
It doesn't worry me
Even though
I ain't got a lot to spare
- The Nips Are Getting Bigger, Mental As Anything - 

 Woah-oh-ohh. What another insane week I've had. I tell you, if I was well enough I'd be drinking and the nips'd be getting bigger! The morning after my last post I wound up in hospital setting the doctors all a-flutter with excitement and trepidation by presenting with a constellation of crazy symptoms. In my last post I spoke of a weird infection in my lymph nodes that developed a week after the last Rituximab infusion. Well, I called the hospital to let them know about it and to cancel my next infusion because I was unwell. They hit the big red panic button and told me to get my arse into hospital pronto. So, I did. I spent the next 3 days there getting poked and prodded and CUT! I had the neurologists, immunologists, dermatologists, rheumatologists and just about every other 'ologist' you could imagine working overtime to diagnose me. I even got interrogated by a nice fellow from infectious diseases. I was starting to think I had Ebola or something. It was really exciting¡¡¡

At first it was a delayed reaction to the Ritux. Then it wasn't. Then it was. Then it wasn't. Then, after taking 2 biopsies [read: hole-punched in the head and leg with a torture device then stitched up] of a rash I developed, it was a drug reaction. They took what felt like a litre of my blood, stuck things down my throat, poked my groin (not in the nice way) and made me feel like some mysterious creature from the Loch Ness or The Never Ending Story, except I would be the un-luck dragon. Or something. They didn't want to treat me, they just wanted to observe me and see if I would die, heal or just stay all messed up. The upshot of all of this drama is that now they are freaking out about my next infusion. I know I am freaking out about it! The problem is there aren't many options to choose from for disease modifying drugs. And I am so so so not going to take Tysabri.Tysabri has helped a lot of people but it has a higher fatality and complication rate and I am just like, NOOOOO. Even the doctors are reticent about it. My 'medical team' (I have a medical team! Go team!) are working with other hospitals and specialists to work out what to do next. Apparently I am a medical first for this type of reaction. I always knew I was unique, I just wish I could express that uniqueness differently. Anyhoozle. I have 3 different appointments at the hospital next week to discuss their plans. There is talk of doing some desensitizing techniques (probably more prodding) and they plan to admit me to hospital for a few days during and after my infusion. I don't know if they think it is reassuring to tell me this (they seemed quite enthusiastic about it) but they reckon if I have another reaction it will be swift and severe. PHEW, I'm glad to know this. BUT I WILL be in hospital and they WILL have a really good action plan for every possible outcome. Fricking hell. I'm sure it's patently obvious I am very underwhelmed by the reassurances. That's not to say I don't believe my doctors are very skilled; I am in the best hands in the absolute worst possible position to be in. It's a rock and a hard place. A catch 22. A quandry. A quagmire. Freddy's nightmare on Elm Street. It's what Multiple Sclerosis brings into my life almost every day: uncertainty.

So, when I am better, and when I get over this next hurdle and have the perspicacity with which to better articulate myself about this mess, I will update you. I'm not a big drinker but I might make an exception then...and drink a few nips of a delicious and belly-warming libation. Will you take a nip with me when I get through it?

This is from Count Down - a much loved show from my childhood.
Post script: Wilbur is back! It's a long story...

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