Tuesday, March 3, 2015

When it Rains...It POURS!

I love my video blogs...And I thought about making THIS a video...But I don't feel like I would come across very well...And I am so completely frustrated that I think the written word would be much better for this type of post.

2015 was set up to be amazing.  Rich and I had plans.  Goals.  And we were, strike that, we ARE determined to make things happen.  Heck....we even bought a nice journal to track our unwavering progress.


Life hit.

Over and OVER and OVER!

In February, We got a notification that said "Thank you for renting with us.  We value you as tenants!  Starting April 1, 2015 your rent will be increased by $150."


$150...to MOST people, is a drop in the bucket.  No big deal. But to those who live life on a relatively fixed income, scraping by month to month...It's HUGE.

Then, another blow.
A letter from the Social Security Administration stating Rachel no longer "qualifies" for disability.  That her status has "improved".  This not only threw me into a panic....It kinda ticked me off!

Neurofibromatosis does NOT IMPROVE.  Rachel HAS remained stable...As far as brain tumors and vision are concerned...But she is far from "no longer disabled".

Our situation as a family has been "stuck".  On the system and (sadly) relying on it to help us with a place to live and put food in our mouths...And now suddenly...The "system" decides that things are better...When they really aren't.

I was conflicted...embarrassed. At the same time, I'm feeling like maybe this is our chance to get OFF the system, and really push our lives out of the tangled - complicated web of medical - financial - craziness and finally stand up on our own two feet.

My mind going crazy with thoughts...The forces of nature playing a cruel joke on us.  Fate...not wanting us to succeed, or maybe INSISTING that we succeed. I'm speaking in Vancouver in October, But I should be speaking throughout the year. My next book will be out by end of Spring. Our future, while it feels like we're getting constantly punched in the face, is still under our control.

We just need to keep moving our feet. Fight back.  THRIVE.  We put our words to ACTION.  We don't give up.  We see the bigger picture....and hand our stress and our fears a KNOCKOUT blow!


Monday, February 23, 2015

Bailey's Service Dog

Two years ago, Bailey applied for a service dog.  Fergus has been such a big part in Bailey feeling better.  Not only does Fergus detect seizures -  He helps Bailey cope with the emotional side of dealing with a progressive - and complicated disorder. 

For more information about where Fergus came from, please go to www.freedomservicedogs.org

Do you qualify for a Service Dog?  Google 'Service Dogs' and search your city for organizations that can help you apply!

To Qualify:

  • Be at least 12 years of age unless service dog is needed for a child with autism (see below)
  • Have a diagnosed physical disability, anxiety disorder such as PTSD, debilitating chronic illness, or neurological disorder affecting at least one limb
  • Reside in a stable home environment
  • Be physically and cognitively capable of participating in the process of training, up to one hour per day
  • Be able to independently command and handle a service dog
  • Be able to meet the physical, emotional, and financial needs of a service dog
  • Have no other dog in the home (other animals as pets are permitted)
  • Tuesday, February 17, 2015

    VLog 2/17

    Monday, February 9, 2015

    Monday Vlog!

    Two down -- More to come...

    Today I used my web cam on my computer....Not liking it at all!  Not sure what's up with the lagging and choppy-ness.  Blah.
    But ....I am posting anyway....This way I can see the progress I make, as I get better at these! :)

    The OCD part of me wanted to just delete it and start over.....So this is a BIG thing for me!!

    Please comment and give me some more ideas --

    Monday, February 2, 2015

    Video Blog Monday!

    2015 has gotten off to a very busy start....I have so many goals for this year!  One of those goals is to get myself out speaking about Neurofibromatosis...So to kick that goal off, I wanted to start a weekly VIDEO BLOG!

    I've done this before...But "things" always seem to get in the way -

    Please respond as to what you would like to see in my video blog....Any questions you have? I need IDEAS so that I can keep this going :)