There is a little repetition from my previous post but it puts everything into perspective and demonstrates just how changeable things can be and proves we live our lives on the one path. That’s the way of it!
After spending some time with my Neuro consultant we decided that my medication isn’t quite cutting it. The new plan is to bring me slowly off the pills and put me onto a regular course of iViG. I had previously had a course of plasmapheresis that proved successful in making me feel good but the effects were short lived. Plasma therapy is becoming very difficult to come by and is reserved in our Neuro hospital for medical emergencies only. I’ve no issue with that. IViG or intravenous immunoglobulin is a similar process that removes and replaces the bad juju with good stuff from donors. It takes less time and because it doesn’t involve being monitored in intensive care should cost a lot less. I’m told it still requires a great deal of additional funding which as we know is hard to come by and also there are a shortage of donors.
I’d received a call from my consultant to say the iViG was going ahead. I would get my first infusion which would take two days to administer and to expect a call to book me in. True to her word I got the call and was booked in. I felt so good just to get the call. I knew that if I could return to the state I was in following my first course of plasma therapy then life would be great again. I went headlong into that weekend with such a positive spin on life. I was planning so much. Then came another call. We are going to have to cancel your iViG because we cant secure the funding for ongoing iViG every 8 weeks for the foreseeable future. The screech of breaks, the sound of drums and cymbals rolling down stairs and the piercing sound of breaking glass. I had become a funding casualty.
It must be so demoralising to spend a large chunk of your life studying every hour possible with your only goal to fix people only to be told you can’t have the funding you need to carry essential treatment to fix your customer. It must be equally difficult for the poor person who’s job it is to make the telephone call of disappointment.
I’m now starting the slow process of coming off my cocktail of medication. It’s something I’m told I must do very slowly. There is a chance I will bring on seizures which to be honest I can really do without. I’m left in a state of limbo. I don’t know if or when I will start the very much needed iViG.
Today is a low day. I can’t give you a reason why. I’m just not firing on all cylinders, probably brought on by a combination of everything I’ve explained above and the simple fact it’s raining outside. Maybe in the past I would put it down to the black dog of depression. Now I’m not so sure. I don’t think I’m depressed. I’m just feeling a bit shitty, it will pass. I have a brain injury it’s ok to feel less than 100%.