Sunday, 5 February 2017

2017: New Year Updates

It's well into February now, but this is my first post for the year so Happy New Year Everyone!







I had been well into writing a post about what Trump being POTUS means for disabled people  around the world and especially in the United States before I realised it would be my first post for 2017 and that would not do.  Though watching and hearing the news from day to day could easily make you feel like the world is going to Hell in a handbasket, I'm making a concerted effort to keep my head and look for positivity and keep upbeat for the sake of my own mental health and self care.  That's not to say I'm going to pretend nothing bad is happening, on the contrary, it'll help me keep my energy and will up to resist in whatever way I am able - but more about all that another post.

So for my first post of 2017, I'm following on from my update post from November last year, and updating on those updates.  So meta...

Medical Stuff

I saw a geneticist in late November and he was fairly optimistic that I do indeed have a rare genetic disorder perhaps yet undiscovered.  He sent me off for a full bone survey and blood tests and put in referrals for me to see a dermatologist and an ophthalmologist in case there are any abnormalities that haven't been picked up before that would contribute to a symptomology of my syndrome.  I'm on the waiting list to see these specialists.  In the meantime, my geneticist is liaising with some international colleagues about my case and also looking into how and when I could get full DNA testing as at that point in time there was not enough funding and my case was non-urgent.

Over the Christmas and New Year break, my mother uncovered a huge stack of medical documents from the time I was born till fairly recently, which I spent a great deal of time sorting through and compiling into my own medical file.  I stumbled across a letter from earlier genetic investigations from when I was a young child and was pretty surprised at the thoroughness of the investigations that I have absolutely no recollection of.  I scanned the letter and sent it to my geneticist since he'd asked me a lot of questions about my mum's pregnancy and my birth and infancy that I obviously had no real memory in which to answer.  So hopefully there will be some substantial answers and information in the not-too-distant future!

Moving and Working

I did not end up moving cities.  I got a great job where I already was, but am looking to move house with the same flatmates.  In the meantime, I started my new job which involves a lot of community work and advocacy for the disability sector.  I've only been at it a couple of weeks but have loved every minute so far as it perfectly aligns to my values and goals, and allows the flexibility I need.

Unfortunately getting a vehicle for transporting my electric wheelchair will involve jumping through a great many more hoops (a common occurrence I'll discuss in a future post) and a lot of time before or even if it'll ever happen, so in the meantime I've finally learnt how to use the local buses.  Next will be using buses between towns or cities.  There's a little bit of travelling ahead for me for work so maybe that will also be a future post.


So all in all a fairly exciting year ahead full of promise and change on a personal level at least.  What's new for you guys for the year?  Comment below :)

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