2021-07-19 15:50
I don't know what's wrong with me. I just can't seem to get myself motivated to blog...or be active in NF groups anymore. When I try....I witness so much negativity...so much anger… Read More
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Thriving With Neurofibromatosis Blog
thrivingwithneurofibromatosis.blogspot.com
A blog about how our family lives and thrives with Neurofibromatosis.
2020-04-15 14:40
My "last day" of work was March 20th...Which means, we have been quarantined for ALMOST a month. Time flies when ure....Nope....Not having fun!Isolation sucks. Period.With 6 othe… Read More
2020-04-01 16:39
So...Now that we have nothing but time, I am determined to re-start, re-vamp, re-Something my role in the NF community. I feel bad. I let life get in the way, and in doing so, I… Read More
2019-07-24 16:36
It never fails.It's constant - Predictable.Every. Single. Time.I get all prepped to write. Headphones. Good music. A good blog topic.BAM.Phone rings. Toilet floods.&n&hell…Read More
2019-06-22 16:56
I've been struggling guys. I'm not sure we have been properly armed. For my kids' ENTIRE LIVES...we have been seen by Children's Hospital. Even the kids without Neurofibrom… Read More
2019-06-07 17:37
So, I realize that I have let a lot of things slide that were once very important to me. I don't know why I let this happen. It's not like NF has gone away....Or that we don't st… Read More
2018-10-30 21:44
And, as promised, the License Plate picture:Thrive On! Read More
2018-08-20 20:37
I suck. I admit it. I've let the entire Summer go by without a single blog post....It's not that I don't have anything to say....Cuz with 6 kids, and a hubby....Life is ALWAYS ha… Read More
2018-04-18 17:14
Have you seen these two characters?Haha...This is me and the hubs, just living life...The struggles, the successes...All of it, together!WHY?Success only comes when you have support there to… Read More
2018-04-06 15:03
I hate trying new things. I do. It's a fact. When pushed out of my comfort zone, I shut-down...I retreat. I cower. It's SCARYYYY out there....so if I don't HAVE… Read More
2017-12-11 17:52
Update on Yoda!Sometimes, things are not what they appear to be...Have you ever been told that..? If I believed everything a doctor has told me..I'd probably be living secluded somepla… Read More
2017-12-07 15:50
My dear friends. This is Yoda. And so is THIS.All 11cm of it.'My' Yoda however, doesn't have a light saber. No super powers. And no wise or prophetic words.It's a tumo… Read More
2017-11-16 16:32
I don't like posting only when there is bad news, but this is where I am. I had put off going to the doctor long enough. I scheduled a full physical, including the dreaded… Read More
2017-08-23 13:50
It's amazing how fast time goes. Sometimes, it feels like a sneaky little thief. I blink...And its gone. Chunks of time. I'm worried today. For the past several… Read More
2017-04-03 18:23
Several years ago, after our families diagnosis of Neurofibromatosis, we had a choice to make. Run from it....Like my own mother did....Or LEARN from it.One night, I was sharing in the… Read More
2017-01-16 18:41
I know I know. It's been FOREVER since I have posted a blog. The holidays....Work....Kids home for almost 3 weeks....My life has been just a WEEEE bit chaotic. Forgive me.Medical… Read More
2016-11-07 20:10
After being diagnosed with Neurofibromatosis in 2007, I quickly had each of my 6 kids checked out and screened. 3 of the 6 of them were diagnosed shortly after.Seeing what my old… Read More
2016-09-29 20:19
So, I have stayed relatively quiet here for the last few months. But today, after hearing about this episode of Scream Queens, it spurred some inspiration.Overall....I think the episod… Read More
2016-08-03 18:43
In 'every day life', my NF stays relatively quiet. I go about my day just trying to survive the craziness. I wake up, go to work...come home, spend time with the family...Go to b… Read More
2016-07-18 17:10
I miss you - Mikey. Growing up, you and I were inseparable. I didn't really know much about you, until after mom and dad divorced. I knew you were sick. But you always show… Read More
2016-06-18 16:22
As a human being, it's easy to focus on the negative things in life. I mean let's face it, life is HARD! And sometimes, life is unfair.I didn't grow up as an overly optimistic person… Read More
2016-05-18 21:13
I was talking to my manager about my family, specifically why we have all these doctor visits that include MRI's, blood draws, vision checks....I wasn't asking for time off for these a… Read More
2016-04-15 18:00
I was emailed a question a couple weeks ago from a woman suffering an extreme form of Neurofibromatosis. Attached was a photo. In the e-mail she asks the question..."Why did God… Read More
2016-03-09 19:01
It's hard to believe that 2 weeks have gone by since I was in Canada. It was such a heartwarming experience...And I find myself longing for more.While I was at the symposium I had this… Read More
2016-02-29 18:00
I am still coming off my high, from the amazing weekend I had! I just can't get enough of this stuff! Sometimes I wish, I could just clear my schedule, and do this full-time!WAIT....Wh… Read More
2016-02-24 16:53
I'm so excited! In a few days, I will be in Vancouver British Columbia!I have been invited to share my story about how Neurofibromatosis affects my life, as well as the lives of my chi… Read More
2016-02-05 20:20
2016-01-31 00:55
2016-01-21 15:10
I remember my first roller coaster. I was 8. I stood before the GINORMOUS set of tracks, that twisted and turned....And even went in a loopy loop. As I stood in line, with my older brothers… Read More
2015-11-06 16:49
I love the advice people get when speaking in front of a large crowd. Being married to a professional speaker, I think I have heard it all!Honestly, I think picturing the crowd in thei… Read More
2015-10-29 02:36
When I am asked to speak about Neurofibromatosis....There really is no hesitation to saying YES. It's my thing. I feel great doing it...Even when the nerves are overwhelming.This… Read More
2015-10-22 19:44
I feel it in my gut. The nerves. The excitement. The adrenaline!This weekend, I have the privilege of flying to Pennsylvania to speak to a crowd of several hundred, to help… Read More
2015-09-30 17:35
I am full of excuses. This morning, my husband came upstairs after I had dropped the kids off at school, excited about challenging me to a workout based on the cross-fit workout he'd a… Read More
2015-09-24 18:42
So, after a WHOLE LOT of convincing attempts from my hubby, I finally downloaded Periscope. An app that I knew very little about, but thought I would play around with it, to see what all the… Read More
2015-09-01 16:26
I hate when it goes this long between blog posts. But, a friend once said to me...That she knows I am doing well, when weeks go by between my writings.It's not that I have nothing to w… Read More
2015-07-27 17:00
We ALL desire that human connection. The feeling when you connect with someone who TRULY gets it. It's a rare thing in the world of Neurofibromatosis. And I have yet to mee… Read More
2015-07-20 15:29
"I know you!"This voice, and these words caught me off guard. I was at work, behind the register, expecting to ring up yet another large drink, ginormous popcorn, and package of Junior Mints… Read More
2015-07-08 19:37
After Rachel was taken off disability, I sorta panicked. This meant no health insurance...And I was left scrambling...Trying to figure out what to do.She needed an MRI...She has been c… Read More
2015-06-24 23:06
So, I've been working at the movie theater for 3 months now. I've made my presence known as someone who is hardworking and reliable. My favorite job there, is working in the cafe… Read More
2015-06-01 23:32
The kids have been gone for over 24 hours now...The house is empty....And I am feeling like I want to accomplish ALL these things....But...I am having a rough time getting my mind (and I gue… Read More
2006-06-07 11:16
Today....I woke up with every intention of it being a GOOD day! I have the day off from work....I was going to go to Crossfit....Clean my house (Christmas Break has left my house in a state… Read More
2006-06-07 11:16
Do you ever get so busy and so overwhelmed with what's going on in your life, that it seems no matter what you do, you will never get ahead...?This holiday season has been like no other. &nb&hell…Read More
2006-06-07 11:16
This week, Star Wars opened...It has been something that has been talked about since I was hired at AMC Theatres 10 months ago.Wednesday night from Midnight til Thursday… Read More
2006-06-07 11:16
You know how when you are driving around....And you spot someone on the road driving the same kind of car you are in...? You take that extra time to check the other car out....Maybe ev… Read More
2006-06-07 11:16
I had no idea that I would be able to love something that scared me so much. Speaking in front of large crowds was my hubby's thing....NOT MINE...And I was always safe in Rich's shadow… Read More
2006-06-07 11:16
An AMAZING selfie of my daughterThe rainbow of Autism. What does it mean? A wonderful metaphor describing a broad community of unique and challenging individuals.3 of my 6 childr… Read More
2006-06-07 11:16
I know most people can't say that they are excited to see the doctor...But I was. I was SO excited in fact, that I had a completely different blog post already written, in anticipation… Read More
2006-06-07 11:16
This was taken from a Facebook user....And while it COULD be a made up story...I wanted to address it anyway.First of all...Who do you think you are? You may be lapping this person, bu… Read More
2006-06-07 11:16
This has been a long time coming. Do I dare say I was excited about this visit? (I use the term 'excited' loosely.)Our family has a love/hate relationship with the ENT. 4 years a… Read More
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