So I've had two half infusions. That makes one "treatment".
I don't really like to call it a treatment because it's not. A treatment implies some sort of healing or treating, whereas this is just a punt. Hoping that it will be successful and maybe slow or halt the lesions.
The lesions aren't slowing yet. I've had three MRI's so far. First one showed up lesions and led very much to the MS diagnosis. Second one, three months later, showed new lesions. Neurologist concluded I had "active MS". Third one, three months after that, showed more new lesions. Neurologist changed his diagnosis to "highly active MS". And the Ocrevus hasn't done much yet that we can see.
Craig and I had our birthdays. The big 5 0. I didn't really know what to make of it. It's kinda hard turning 50, having just been diagnosed with a disease like MS (with no knowing the cause, and not having a cure), with three dead children, and life just sucks really. I mean: what am I supposed to do? Smile and play happy? Coz that's what most people expect.
No-one asks me how I am. No-one. It seems everyone else is suffering more from my diagnosis than I am. Because (apparently) it's very difficult for my mother and my MIL that I have MS. Really. It's apparently terrible for them that their daughter and DIL has MS. Can you believe it???? I certainly can't. Bloody drama queens. And no-one seems to care how I feel. No-one except Craig. I think I'd kill myself if I didn't have Craig.
I hate not having my own space. I hate being tied to this house. I hate that I can't just go away. I'm hating pretty much everything at the moment.
What if the lesions keep coming the way they currently are? What happens then? One day I'll wake up and can't speak, or can't move my arm(s) or can't walk? Or one day I'll be blind? Or worse? What happens? Oh, yeah, but I'm supposed to be optimistic and hopeful.
Right.
I don't really like to call it a treatment because it's not. A treatment implies some sort of healing or treating, whereas this is just a punt. Hoping that it will be successful and maybe slow or halt the lesions.
The lesions aren't slowing yet. I've had three MRI's so far. First one showed up lesions and led very much to the MS diagnosis. Second one, three months later, showed new lesions. Neurologist concluded I had "active MS". Third one, three months after that, showed more new lesions. Neurologist changed his diagnosis to "highly active MS". And the Ocrevus hasn't done much yet that we can see.
Craig and I had our birthdays. The big 5 0. I didn't really know what to make of it. It's kinda hard turning 50, having just been diagnosed with a disease like MS (with no knowing the cause, and not having a cure), with three dead children, and life just sucks really. I mean: what am I supposed to do? Smile and play happy? Coz that's what most people expect.
No-one asks me how I am. No-one. It seems everyone else is suffering more from my diagnosis than I am. Because (apparently) it's very difficult for my mother and my MIL that I have MS. Really. It's apparently terrible for them that their daughter and DIL has MS. Can you believe it???? I certainly can't. Bloody drama queens. And no-one seems to care how I feel. No-one except Craig. I think I'd kill myself if I didn't have Craig.
I hate not having my own space. I hate being tied to this house. I hate that I can't just go away. I'm hating pretty much everything at the moment.
What if the lesions keep coming the way they currently are? What happens then? One day I'll wake up and can't speak, or can't move my arm(s) or can't walk? Or one day I'll be blind? Or worse? What happens? Oh, yeah, but I'm supposed to be optimistic and hopeful.
Right.
0 comments:
Post a Comment