My brokenness

I know I write a lot about brain tumor stuff, because let’s face it.  My life has a lot of brain tumor/brain surgery stuff in it right now.  And, while I don’t want to come off sounding like a “blamer or complainer” I do want to document what life is like for me with Lhermitte-duclos Disease.  With that being said, I saw my neurologist this week and he said I may have had, “Topamax toxicity” (but I talked with a pharmacist and he said that my symptoms could have been side-effects of the medication), I also am going to a bigger hospital for further testing on this ‘ole noggin of mine.  My understanding is that it’s further testing of the EEG and to check my entire brain function, not just my cerebellum function.  All this is kind of scary, to be honest.  Scary to think about what my future will look like.


I wanted to write about some good stuff:

  • I able to exercise at a place where I feel very welcomed.  This is a big deal for us fluffy girls!
  • I volunteer at an animal shelter and I love spending time with the cats.  Yes!  I am THAT girl!  🙂
  • I volunteer as a Literacy Tutor.  I love to see the Learner’s confidence continue to grow AND we have birthdays 3 days apart (NEXT WEEK!)
  • I am Auntie to 2 crazy, Minecraft-loving, nephews who are the kindest boys ever!
  • I have subbed part-time the last couple of months.  I am so thankful.  It’s a few days a week which gives me the necessary time to take care of the medical (4 this month so far) appointments and procedures.

So, my point is that I have a lot of scary stuff going on, but I also have a lot of good stuff, and every so often I need to switch things up a bit.   I understand that Cowden Syndrome and Lhermitte-duclos Disease aren’t the same as having a broken leg.  Once you have a broken leg you heal and move on.  Part of me feels very broken, yet when I am in the midst of the good stuff I am able to forget my brokenness for a short time.  I guess that’s the meaning of my life right now:  finding things that fix my feeling of brokenness.

Please NOTE:  The password for PROTECTED:  Rare Disease Day 1 and Rare Disease Day 2 are the same.  Thank you!  And I hope to add the rest of the pictures tonight!


3 thoughts on “My brokenness

  1. Gotta love the good moments and be thankful for them! I’m ready for some more good moments…hope you have more too!

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