No particular order

I don’t know where to begin.  Life has moved so quickly that it’s been difficult for me to keep up.  I have several things I want and need to write about, but it’s difficult to break it all down.  (I’ve noticed that my brain works a bit differently now since surgery.)

Do I write about:

  • The neurologist and neurosurgeon appointment I had last month?  Where when I did one of the specific neurology tests for them I was so overwhelmed with my balance deficits?
  • The appointment I had with the Psychologist (Psychiatrist?) that the Department of Disability Services sent me to (after the above appointments.  Same day.)  After spending over 2 hours with him I also was saddened of the memory deficits I have?
  • The appointment with my primary doctor where we went through a list of labs to draw, most specifically discussing having started me on estrogen replacement even with my breast cancer risk?
  • That my balance and vertigo episodes are steadily increasing?
  • That concerns over my financial situation keep me up at night?
  • That issues with my brain trump all happiness I can find in my life?
  • The EEG and CT Angiogram I had Monday?
No.  They are not trying to read my mind.

No. They are not trying to read my mind.

That’s a lot, right?  And, that’s not even 1/2 of it.  But, that’s the most of what’s been on my mind (no pun intended).  While I am going to discuss most of these points (because that is why I have this blog, to write about all this.) I also am very aware that in the depths of fear and sadness of the unknowns, I need to be very aware of the good moments (days) in my life.  Because there are some of those.  And let’s face it, there’s always some sunshine, it’s just a matter of making solid effort to look for it.

  • I have just found the wonder that is The Big Bang Theory.  I AM IN LOVE!  Where have I been?!
  • Volunteering at my nephews’ school.  I don’t have children, may never have children, but the teacher in me really likes to be there. I must admit it.
  • Spending time at a local animal shelter (you can see some of the recent pics here.)  I have a super bleeding heart for all animals and if I could, I would absolutely take every cat home with me.  But, since I have so much love to give and no one to give it to (besides my nephews) I might as well spend as much time there (as I can muster).  It’s hard to leave them there, sure.  But, when I get sad I remind myself that them being there is 1000000% better than the alternative.
  • Having connected with another person who has Cowden Syndrome!  Can you believe that?  I found her (and a few more) on Instagram, but this person lives only a few cities away from me.  We met again yesterday for lunch.  I’m still reeling with the fact that with statistics of 1/200,000 people diagnosed with Cowden Syndrome, I found someone who lives close.  Un-freaking-believable!

There’s more.  Of course there’s more.  Right now, in fact, I am listening to my mom and nephew play in the hallway and Nephew #2 is laughing and having such a great time.  Hearing his laughter is just the sweetest sound.  So, my point here is this:  I know that life is a matter of focus and perspective.  It matters tons where you point your thoughts and energy.  I get that.  I totally do.  I try to be positive and upbeat.  I try to keep all my medical stuff here only, and not on Facebook, etc. because I’m learning that most people don’t want to hear about it.  Only people who deal with chronic medical issues really understand.  So, here is where I am raw and real, about what life is like with Lhermitte-duclos Disease AND Cowden Syndrome.  But, I don’t want to forget (too much) about the other parts of my life, but I’ll be honest.  When I’m dealing with LDD and CS stuff and I’m in the depths of despair, it’s freaking hard to find the good.  So, I am fighting as hard as I can to hold tight to the good stuff. And, trying to make (and find) more good stuff in my life.

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