So today one of those memory things popped up on Facebook. I reposted it, so you’ve all probably read it already. It was a quote of an old friend, Anne, from when she was fighting a cancer that eventually took her life just before her 27th birthday. She said
‘enjoy your food, appreciate your breathe and be grateful for your independence and health, because without them, you’re fucked!’
Anne said and wrote a lot of things that I’ve thought about a lot lately. Her words, though insightful and wise, mean so much more to me now than they did 4 years ago. Not because I think my disease will kill me, but because we all believe we are invincible… when we are not. I truly believe that I will fight my disease head on, I truly believe that I will be that remarkable case that specialists tell their patients about. I am going to be one with NMOSD (neuromyelitis optica spectrum disorder) that lives a full and normal life. I am probably in denial, but it is what I truly believe and it doesn’t hurt to stay positive.
I haven’t been wanting to write lately, mostly because a lot has happened and it takes me a little while to process before I can talk about it.
My scans are unchanged mostly. This is good and bad news. This took a lot out of me. why?! well, the good news is, there isn’t any new lesions. woohoo!
Good news stops there. Bad news…. The big (tumefactive) brainstem lesion has atrophied. This means that the brain tissue is dead, gone… forever. While I have adapted, and other areas of my brain have take over the role, it is still devastating to see a scan where a large section of my cerebellum and brainstem are ‘missing.’ It shouldn’t have come as a surprise because more than 50% of lesions end up this way. It’s just not something you want to see!
So, the chronic haemorrhage is still there, probably no longer bleeding, but remnants remain, to remind me of the seriousness of this disease 🙂
The spinal cord lesion is my sworn enemy. It is still ‘active.’ Still “contrast enhancing”, still doing damage. Still pissing me off! Mostly, it upsets my bladder, and the reason I now use a tube to be able to go to the toilet. It also makes parts of my body go numb, which is both annoying and sometimes embarrassing.
Lastly, my thalamus is “super bright,” inflamed. No lesions, just inflamed and annoying. It is why I always feel cold, even when it is warm. Stupid brain 🙂
I started vomiting about a week ago, along with a few new symptoms. The vomiting upsets me a lot. I go and buy lots of chocolate, and food I usually enjoy… but I still can’t eat it. 😦 The new symptoms aren’t too bad, more frustrating than anything else.
Mostly, I am grateful, for lots of things. For being one of the lucky ones that gets to live past 30. Anne often talked about it being unfair to be sick and die young, but also how it is a privilege, and luck of the draw to be able to grow old. As morbid as it sounds, how true is that? I’m 30 years old and I’ve had 2 friends die from cancer, 2 in accidents and one in a fight. We, the ones reading this, are the lucky ones. Even if this disease scares the shit out of me, and pisses me off, I am still one of the lucky ones.
I don’t always feel this positive. I also have moments where I cry and think about how unfair life can be. I’ve realised that it’s ok to feel sad and worry, it’s all part of acceptance and I think after 2 years, I am almost there 🙂