Health, Lhermitte-duclos Disease

Except it.

  1. You have two brain tumors.
  2. You have a rare genetic condition called Cowden Syndrome.
  3. You had 2 brain surgeries.
  4. You had a prophylactic hysterectomy.
  5. You had thyroid cancer and had 2 surgeries as well.
  6. Once returning to work after both brain surgeries, you were bullied and forced to quit.
  7. You now have some cognitive issues.
  8. You applied for Disability.
  9. You were denied Disability.
  10. You tried to raise money to survive.
  11. You were forced to file bankruptcy.

But just except it, Heather. Then you’ll be fine.

Health, Lhermitte-duclos Disease

On dizziness

So, this dizziness thing is getting really old, yet I know I can’t hide from it and I’m a bit scared to accept that it’s happening more and more in different areas in my life.  Funny, as soon as I typed, “Scared to accept” it hit me like a ton of bricks.  All this boils down to is fighting the inevitableI need to accept this, and I’ve known that for quite a while.  I know I am scared, and I know I need to accept brain tumors and all they bring with them.  I am scared of the unknown, and I am scared of what my life will look like in 2, 5, even 10 years from now.  What type of life will I be able to lead with (chronic) dizzy and balance issues?  Thanks for nothing Lhermitte-duclos disease.  Eff you.

Anyway, what is triggering this post is on Sunday at church I noticed a new thing.  I guess there is always going to be “a new thing” with 2 brain tumors, right?  haha.  When I closed my eyes to pray, lowered my head, everything began to spin.  Ugh.  I mean, really.  Now, this?  I am forced to accept that when I’m praying to my Higher Power I have to navigate things spinning?  UGH UGHI can’t even.

Yes, I know that others have it much worse than I do.  I fully understand that.  Yes, I know I have much to be thankful for.  Yes, I know that I am able to still do so much, and I am doing all I can to focus on that:  exercising, volunteering, working when I can, spending time with family, etc.  But, that doesn’t mean I don’t get tired and overwhelmed.  So, that’s why I am thankful I still have this blog when I can write and whine when I need to.  Today I need to.

I don’t know what tomorrow will bring.  Probably more dizziness and vertigo.  And, I sure wish it didn’t.  I wish and wish and wish….blah blah blah.  I guess I need to stop “wishing” for so much and work more on the “accepting” of what is. 

But, I have to own my truth that I am just a bit sad today.

Cowden's Syndrome, Health, Lhermitte-duclos Disease

Acceptance?

I wonder if it ever gets easier?  The acceptance or understanding of knowing you have a genetic condition?  It’s weird.  I just got the copies of my records from my neurosurgeon.  Scanning them brought me back to July in an INSTANT.  I can feel all the anxiety flooding back and I’m not there any longer!  It’s January 2012 for Pete’s sake! 

I’m preparing the paperwork for the geneticist appointment and.  It’s just weird.  Things are weird.  I look at pictures from before the end of July last year and I wonder where that girl is.  She was so carefree and didn’t have a thing to worry about.

I need to write more about this because keeping it inside is making me sick.  I found this thing on Facebook called Globalgenesproject.org and they are doing a blog hop, or something like that.  I want to participate and I emailed someone…since I have this blog…but of course I never heard back from anyone.  Go figure, right?

Oh well.  Just moving and walking and moving and walking and drinking water and keeping busy.