Wednesday, April 1, 2015
The last 2 weeks have been incredibly busy. Lots of good things have happened, and I am trying to find my groove and feeling a huge range of emotions, as I am learning to let go of some of the control and find new ways to trust the situation we are in.
After a 7 year "break" from working outside of the home....Our family has been faced with a pretty stressful predicament -
Our rent went UP...AGAIN....And we also got news that the State of Colorado feels that one of our kids who receives disability for the complications of having Neurofibromatosis....Suddenly is "all better" and no longer considered eligible.
For those living with a Progressive.....Aggressive genetic disorder...That can turn deadly without warning....Being told you are "all better"doesn't fly.
My husband met with someone hired by Social Security....Who CLEARLY had NO IDEA what Neurofibromatosis is....Who just asked a few questions and jotted down some notes about how SHE FELT Rachel is doing....A WHAM BAM- THANK YOU Ma'am interview, that clearly had an affect on the decision....And was based on no real information....
So....Basically, we could have appealed the decision, but instead ...We chose to let it be.
Which meant, we now had to figure out how to make up that income, and be sure to have enough money to also cover the jump in our rent.
So....I dusted off the ol' resume....added a few things that would be sure to grab some attention.....And applied for a few jobs.
5-6 Applications later.....I started to get some phone calls asking for interviews.
This is when my emotions began their roller coaster ride.
I was HAPPY that I was still a desirable potential employee.
I was SAD that IF I was hired, I would miss out - at what was going on at home.
I was ANGRY that it was ME going to work.
I was EXCITED about 'getting back out there'.
I was PROUD to be ABLE to work and help out the family.
Then...I was actually hired.
I started working at the movie theater....The BEST choice of the 5-6 jobs I applied for, with the BEST "perks"....(Free UNLIMITED movies for ME and the ENTIRE family!)
---Then Mikey (my brother) came out for a visit...Just as I was beginning my training at AMC. Bad timing....but it ended up working out okay.
So aside from having to clean up VOMIT....URINE and other interesting things at the movie theater....The job is pretty cool....I am now working as a 'Barista' -- making cool coffees and ice cream stuff.....
I was also 'Awarded' a cool gift certificate for having a customer tell a manager that I was super nice and provided the FIRST smile he had seen all day....
I am learning to let go -- And trust my family
And allowing Rich to take over.
As we head into April....May....It is also time for our yearly check in with the NF clinic. This means MRI's -- Eye checks -- and a bunch of other NF-y type stuff.
Both Rachel and Bailey have MRI's coming up...and I won't be able to be there. This brings ALL of those emotions up and stirs them around, and makes me feel rather crummy....
But I know that ALL of this....Is just part of working together as a family....And I have to trust that everything will be okay.
My 'THRIVING' is being tested...And it's NOW, that I need to prove that it is possible!
I hope to get more video blogs up and going...But for now I am just happy to have the time to write :)
Wednesday, March 11, 2015
Wednesday, March 4, 2015
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.
Tuesday, March 3, 2015
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!