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One Step Forward. Two steps Back.

Soooooooo, it’d been more than a month since I’ve written. There is good reason. A lot has happened, a lot has changed and I don’t know how to put it in words. I’ve felt a bit lost of late, in between appointment after appointment after appointment, juggling with my full time work. We’ve added a hepatologist, gastroenterologist and dermatologist to my ever growing team of specialists who still can’t figure out the cause of my inflammatory, uncooperative, broken brain and spinal cord. Which makes me laugh a little, because 2 years on, my deficits are almost gone and I feel pretty good most of the time. Why so much attention now?

I started vomiting again last month at about the same time as a petechial rash appeared on my bum. We did a heap of tests to make sure I was clotting ok and then decided it was a once off when it went away. Only, it returned again and again and again in different places. It got the attention of my neurologist (who is almost impossible to get his attention).  Anyway, after a lot more tests and a review and many many photos of my bum :), my neurologist decided that maybe it was vasculitis. This now raises more questions… has this been CNS vasculitis the whole time and not NMOSD? am I just super unlucky and have 2 incredibly rare diseases? what sort of vasculitis do I have (there are many with varying degrees of severity)?

Now I have been referred for a scope and stomach biopsy, a skin biopsy and ? a liver biopsy (this one I’m not sure about. The paperwork and blood forms arrived today but no one has told me about it!). Fun times! If they are all inconclusive we will move on to an angiogram of the vessels in my brain. I’m a bit over it all and very much wanting a Dr House in my life!

So, to get my mind off things, I’ve deferred my appointments for a week and I’m off to Bali! It’s probably not a sensible move, but hey, you only live once! And the last 2 years have been spent being poked and prodded in hospital so I think I deserve a week of cocktails and massages by the pool! I’m not sure any amount of relaxing by the pool and yoga is going to fully get my mind of things, but I’m gonna give it a good shot!

One thing I’ve found, and the best advise I can give to someone going through anything like this is, always have something to look forward to months from now. Something big enough to keep your mind occupied. For me, news that we are riding the Gibb again excites me. If will power alone is enough to stay healthy, then the Gibb provides me with all the will power I need. For the Gibb 2016, we will be raising the required funds for Sirens of Silence, a brilliant charity supporting the mental health of emergency service workers. After that we will be fundraising for the MS society, so close to my heart. An organisation who help so many, including me, despite me not even having MS! No doubt we will be harassing you all for donations soon in any means we can. Please note that donations to the MS society directly help me. The society provide me with nursing care, physio and counselling at no cost. My nurse also relays information between me and my neurologist (who isn’t the easiest to communicate with! 🙂

So, that’s where I’m at. Almost back to square one, with the added advantage of having ruled a few things out. No doubt I’ll be looking tanned, refreshed and 10 years younger when I return from Bali! Ready to hit my appointments head on!

 

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One thought on “One Step Forward. Two steps Back.

  1. Louise Morgan says:

    Jess!!! What next??? You make me laugh and I am glad you stay so strong and so positive and true to yourself. I hope you have a great time in Bali and come back totally rested and relaxed because it sounds like it could be a pretty rough road ahead. I read your blog twice and then googled vasculitis. I didn’t particularly like what I read but on the plus side at least there does seem to be more avenues to explore and some treatment available depending on the outcome of all the tests you are soon to endure. I suppose at this point it’s a case of fingers crossed that at the end of all the tests there is something definitive and a line of treatment to follow which will provide you with direction and purpose and with that in mind I prefer to think of it as one step forward and two steps sideways – not backwards. Very soon you will know every bend and pot hole along that Gibb River Road and instead of it being the road less travelled, for you it is becoming the highway of life. Now, when you bench press that Buick, I wanna be there!!! Cheers Babe. Love from Lou and Russell xx

    Liked by 1 person

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