A little setback

I saw my neurologist today for my monthly review, and he was a little bit concerned with me. This hasn't been a good month - I've had several bad days, the nausea has been persistent if not increasing, and the dizziness is still present. On examination today I also had some nystagmus and my thumb tremor (although that is now coming and going). He believes all of this is still related to the swelling, and that it is likely the swelling has increased again. So he wants me to increase my dexamethasone dose, up to 2mg a day. My neuro didn't really offer a reason for the increase in swelling, but that it can happen, and we just need to take our time with lowering the dex dose. (I've actually read on Dr Google that the swelling can come and go for no real reason).


But my neuro remains optimistic that I will get back to "normal". I mentioned to him that I was thinking about going back to work but he actually advised me not to until at least the start of the new year (obviously depending how I feel then). I was hoping to be able to start earning some money again! He thinks I will still be on the dex until early next year. So he wants me to have another MRI within the next two months. I also need to have a bone scan, just to check for signs of osteoporosis since it can be a side effect of the dex. I've also got a script for an antacid to combat another side of the dex, crippling heartburn. Stupid (lifesaving) dex.

One other thing that my neuro confirmed today is that losing weight on the dex is a near impossibility. Due to it's impact on the cortisol levels, I put weight on around my trunk, face etc. And it doesn't want to go anywhere. I've been a bit focussed on my weight these past few weeks as I don't like what I see in the mirror. I guess I have to learn to just be grateful with what I see staring back, as at least I can still see!

I'm quite disappointed at all of this, but also a bit relieved. I have been struggling these last few weeks and I'm over feeling nauseous. So increasing the dose will hopefully help with that. However, to have a setback is a bit of a downer, and unfortunately makes me a bit anxious that I might get even worse. I just have to remind myself that even on my bad days, I am so much better than what I was 4 months ago. I might just cheer myself up by thinking about Unicorns. Ones that poop rainbows. Yes they do exist.

Unicorns pooping rainbows   (clipped to polyvore.com)