I've been emailed a few times about my blog, and about the way I have chosen to look at my life withNeurofibromatosis. Most of the comments I receive are very positive and I appreciate that so much. But there are few who question my positive choice. I'm not sure if they don't believe I actually live like this, or if they have so much negativity in their own life, that they just feel the need to spread it around.
I know all about Neurofibromatosis. I know about the brain tumors, loss of vision, loss hearing, chronic pain, scoliosis, body tumors, headaches, dizziness, learning disorders.
Even with all of that....I dream. I care about all the little things in life, that make life worth living. I believe in miracles. I believe in laughing when you are sad, and crying when you are happy.
Everyone has the power of choice, so why not use it for something that will propel you forward? If your life is spent focusing on the negativity, that's exactly what your life will bring you. NF sucks, there is no doubt about it. Give the power of your mind a chance to fight this disorder. Changing your perception of something doesn't change the something, but it does change the events around the something....It can make dealing with NF a little easier--who wouldn't want that?
The challenges we face in this life, build our character. The challenges reveal our strengths....or our weaknesses. Shakespeare wrote, "There is nothing good nor bad but thinking makes it so." Changing the way you choose to focus on your challenges can make the difference in if you are Thriving...or just Surviving.
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.
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!
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!
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)