I never imagined ‘do you want to end up a mom in a wheelchair’ would ever be this real. This close. Being confined to my bed with the highlight of my day being going downstairs to eat dinner with my family wasn’t exactly the push present I was shooting for. I was thinking more like a shiny new 105mm f/2.8 or a panty drawer overhaul. You know, frivolous things because walking… who worries about walking?
Here are the updates I am willing to share right now. I refuse to speak of one because it can’t be real. Writing about it makes it real and… I can’t. It hurts too much.
I had 3 days of IV steroids without any improvement. I had brain, cervical, and thoracic MRIs done but only know the results from my brain- there is an active lesion on my temporal lobe. I had a new JC Virus draw done but my number wasn’t available before I left last Wednesday.
I’m stuck in Multiple Sclerosis limbo. Or hell. Same difference.
And yet, none of the answers I seek would help me right now because my appointment isn’t until the 23rd. I still have an entire week before I can begin to put this dreadful experience behind me.
For the first time in my 8+ years of being diagnosed, Tysabri isn’t the default answer and I don’t know what to do. For the first time in my Multiple Sclerosis journey, I feel lost.
Lost and still thankful for so much. Like only needing a walking aid, not a wheelchair.
Note: Please forgive how rough this post is. I wanted to share what I could for those of you following along. Thank you for every comment, well wish, and share. It means a lot to this old bird.