Salty Zebra

       Ok, just in case there are those out there that don't know what TMI means, it stands for Too Much Information.  This post will be talking about things you might rather not know about me so here is your chance to click off and go read something more pleasant. So why am I writing it?  I just feel like NOT saying these things is being inauthentic. It's like I'm only talking about the good things and not telling it like it really is.       I've been struggling lately because I post things, and everyone says how happy they are that I'm doing so well when I'm really not.  It's not their fault though, because they don't know how I'm really doing because I'm not telling people.  That's because it involves things that are not fun to hear about or talk about for that matter.  Sometimes it's because the things are gross, other time it's because they involve more private or embarrassing areas of the body. In polite society we just don'

  Picture     So how does one live with a brain tumor?  Honestly, I'm still trying to figure that out.  My doctor seems to think that it shouldn't be a big deal.  He's like, "See you next year!" and here I am trying to understand what that looks like.  I have this thing in my brain, embedded in my Cerebellum to the point that my surgeon cannot safely remove it. It *may* be affecting my vision, nausea, balance, etc., but really, we can't know for sure.  I guess the reality is that I should just go about my business, continuing life to the best of my ability, until I bump up against the tumor.  That might look like an appointment with an MRI to check its status, like I had a couple of weeks ago, or it might be symptoms that make me question whether the tumor is affecting things. I have no way of knowing when or if that might happen, except for a scheduled appointment of course, so I have to figure out a way of living life that takes that into account.       The

It's when I'm "with" my people that I'm most acutely aware of my conditions. This week is the annual EDS conference in Dublin, Ireland which I am attending virtually. Last year was the first time I did this and it was a shocking eye opener. Hearing so many others share identical symptoms was my first reality check that I did, in fact, have EDS. My life was changed. I've had EDS all my life, but knowing it made me see everything differently.  Today I'm at the hospital for my three-month post op from brain surgery. As I sit in the prep area, waiting for my MRI, I'm reminded that I have a brain tumor. That's why I'm here and that's why I'll be back here periodically for the rest of my life. To check and see if the tumor has grown, if I have to have surgery again. Tears well up in my eyes thinking about it.  Here's the thing: There's no point in worrying, it won't change anything, but that doesn't stop the anxiet