The only way is up, isn't it?

Hello all!

I am writing this blog post on my tiny holiday...if you could even call it that. 3 days in Brisbane catching up with a great friend of mine whom I worked with at Sussan on Pitt St back when I couldn't get any teaching work (the year after I finished my degree, 2007). Also seeing the dad...and then off to Canberra for 3 days to see the mum, the step dad, the sis and the darling grandmother. It's not a complete holiday...but it will do for now. There is another one coming up in October where we will be visiting NZ. I am really excited about that one...as long as craft beer is just a small part, not the majority.

First thing to discuss...Mad Sascha. She's been alright. No new symptoms. Just tiredness at times...a few drunken-like sober imbalances at times, involuntary twitching of the leg at times and at times some leg weakness.

What prompted me to write this blog was those darn facie memories that pop up on my feed, and one popped up about my very first Tysabri infusion last year in Sydney. That was a very nervous time for me...with the whole PML business (rare brain infection...google it or see previous posts) and my stupid veins who seem to fear any kind of intrusion.

I still pop a Valium for each infusion to take the edge off the PML related thoughts and to put up with the cannula insertion. The infusion before last, it took 4 goes. That sucked.

Ideally, people will take Tysabri with a low risk of getting PML, for up to 2 years after which the risk increases. However, my Neuro in Sydney said that if I were to remain JC Negative, I can potentially continue the Tysabri treatment beyond the 2 years. I am due for a JC virus test this month...so fingers crossed it stays negative because the idea of having to go onto a fourth drug just frightens me. Will someone just find a cure ffs?!

However, what scares me is what I would decide if I am JC positive. I have an appointment with the neurologist coming up in early August...so I guess a plan B, or other options need to be explored. Tysabri is a bit of a wonder drug...for the moment anyway.

I have a few friends who have stopped or are trying to stop medication for pain and management of their silly illnesses/disorders/whatever and for varying personal reasons. I admire them and believe they are very brave and tough. Personally, considering my medication is taken to reduce disability and progression, I can't go drug free. In saying that, I am quite fortunate that I do not suffer any pain and therefore do not need any secondary medication to manage my symptoms. I do take thyroxine for my thyroid and Lexapro for my anxiety/panic. I am a chronic worrier (not to be confused with 'warrior'). People might laugh, or get frustrated with my irrational fear/worry...but it's not really laughable. It's quite serious and although I wouldn't say it affects my daily doings, it does influence some of my decisions. I want to be safe and negate disaster...hence we are not going to Christchurch, because I am worried about earthquakes. Ridiculous right? Yup, and what's worse is that I completely acknowledge this. Slap me now.

In other areas of Mad Sascha's life...work has picked up. This has been wonderful. I have secured a 5 week, Monday to Thursday contract at a school's disability unit, teaching students with mild intellectual disabilities. It's a school I have had a few days casual at. They approached to see if I was available (months ago). And boom! I got the gig officially on the Saturday just passed. I'm grateful, don't get me wrong...but my aim/goal/want/need is still full time permanent.

There are others things that need work in my life. And that is no surprise for anyone in regards to their own lives. Life is had work. But I guess we just need to keep on keeping on and hope things go up if they are down...even though we know we can't be high all the time. Right?