I have been a slacker lately. That’s not for lack of needing to write, or for lack of blog topics, for sure. I don’t actually know why I have struggled getting to my computer. I do know that I am feeling very overwhelmed lately, more than I remember in quite a while. Had a brain scan last month, an EKG, and just last week a GI and endocrinology appointment.
Here’s what I need to write about today:
At the appointments last week I was told that I have a vermis (about the brain scan). My first thought is, “What the hell is a vermis?” This appointment wasn’t with my neurologist so this doctor was very clear to me that I needed to speak with the neuro. (Obvi). Anyway, I did a bit of research on what a vermis is, but couldn’t make sense of it so let it go. I thought, “Maybe that’s why I am having vertigo and balance problems? Is vermis scar tissue? If so, that’d make sense, I think.” It was just a mess, as always, in my head (no pun intended. HA)
To be honest, this brain stuff usually trumps EVERY OTHER MEDICAL ISSUE of the day, but I was able to put it aside to focus on other things, and in another post I will write about the Global Genes Rare Patient Advocacy Summit that I attended.
But today I spoke with Dr. D (neurologist) and he said everything “looked fine” and blah blah blah “follow up”, etc. I do see him and the neurosurgeon in a few months, and we chatted a bit about my balance and gait problems. Now, these are problems TO ME. I don’t know if anyone else gives a rip about them, but to ME IT IS A PROBLEM. And the kicker? There may not be a DANG THING that anyone can do to help me with it. It may just be LIFE. Again. More life. More change. More adjustment. More coping of NEW stuff that I CANNOT CONTROL OR CHANGE. All these things happening to me that I can’t help or fix! And, when I asked him about the vermis he explained that it’s normal anatomy of the cerebellum. It appears that the 2nd brain tumor is on/in/at/located there.
I forget sometimes that I have another brain tumor, besides the (partial) one that’s still remaining.
2 brain tumors and I can’t get approved for Disability.
I can’t find a job.
I can’t do what I once did.
I have no money.
Now, before you interject here, I know I need to turn this around (I caught it right away, as soon as I started typing “I can’t” and I must write a post with the things I “can do”.)
But not today. Not now. Not tomorrow. Just a word: