Schwannomatosis and My Friend Kathy

My friend Kathy is an inspiring fashion designer with hopes and dreams of one day being able to make life easier for individuals with physical limitations. Kathy has chosen this career path because she knows first hand how difficult it can be to perform an everyday task due to a physical limitation. Unlike me, Kathy was not diagnosed with  NF until she was in her late teens; nonetheless, she has been victorious through over a dozen surgeries and painstaking physical rehabilitation.

Through it, all, Schwannonatosis, has left Kathy paralyzed. She would like your help with obtaining a safe wheelchair accessible vehicle. You see, Kathy goes to and from the art studio in public transportation; I know how frustrating it is to have to count on public transportation and how unreliable it could be. Living with pain is already an everyday battle, being able to travel in a wheelchair accessible car makes a living with  NF a lot more bearable.

Please help my friend Kathy accomplish her goal as a fashion designer for  her to make life easier for those with physical limitations.

Check out Kathy's Go Fund Me page and learn more about this amazing woman!!

A Face for NF

 Created with Imgflip by Angela.
 FYI, Joe made me watch this stupid show.

Joe and I began talking because he remembered my face from high school. He saw me once in the lunchroom at King High School, and that is all it took. Ten years later he saw me again in our Classical Theory class in USF. Joe says that I have a memorable face because everything about me is pretty, but I find it hard to believe because I have had much more encounters of that sort that lead to nothing more than awkwardness.

A few years before meeting Joe, I was walking into yet another class at USF when one of my brother's childhood friends saw me standing in the middle of an auditorium filled with students. He walked to me and said, " Hi, do you remember me? Juan? You're Andres' little sister." It took me a minute to recognize his face because last time I saw him, I was still in grade school.

Unfortunately, not every experience on behalf of my appearance has been as positive. In fact, Joe and Juan are pretty much the only encounters that have been positive. On more than once occasion random people have approached me to say something along the lines of; hey, don't I know you from somewhere? You look so familiar. Didn't we take a class together? Giving the person some benefit of the doubt I would inquire about their major or electives. By the end of the two-minute conversation, the only thing we had in common was that we attended the same university. More often than not the person would just stare at me for a couple of seconds as if they were still trying to figure it out and walk away

You may think that I am looking too much into situations where people approach when they are in fact genuine, but I assure that I am not. Yes, people have approached me with the same curiosity that has been correct, but those are too far in between. Besides, in those instances, the person tells me the class we took together or the name of the professor.

It's not that people cannot approach me in such a matter, it's that after almost 29 years I have become suspicious of people that randomly approach me to say hi. What is it? Do I just look so familiar that you must talk to me? Whatever the case maybe, positive or not I will all ways look at the person that approaches me with doubt in the back of my mind.

To My NF Peeps...

I may not know you personally; I may not know your specific pains or how NF has not only affected you but also your loved ones.
Our paths may never physically cross, but we will forever have a bond due to NF. This disorder that causes havoc in its host with no hesitation has brought us together.
I know I have said this before, and I will continue saying it, I never imagined that my stories would reach so many lives.
As of late, I have received messages via Facebook from mothers with children that have NF that have found new strength by reading my posts. They have asked me questions about my life and my struggles. They have asked about surgeries and if their child should have a particular procedure done or just let life take its course. I answer their questions with honesty and hope. I only say how NF has affected my life thus far and how surgery has improved my overall well being. I tell them that we are all different and that I cannot give them all the answers to their questions because honestly no one can. Regardless, I am still more than happy to answer questions and to provide my life experiences as a testament of how NF has affected me. 
Every single one of us is an extraordinary human! Whether our bodies have dozens even hundreds of fibromas or just the cafe a latte markings; whether NF has caused our bodies to fail us or if we look ordinary we are remarkable. I say this now more than ever because I have been given the privilege of meeting others that have NF and to me, you are all, like Children's Tumor Foundation says, CHAMPIONS AND HERO'S.
I dedicate this blog post to all of you!

Getting NAKED for Charity ( Party 3)

My crazy cousin's video about her experience at this year's Cupid's Undie Run!! Worth a watch!!!

 

Cupid's Undie Run ( Part 2)

photo by Kimberly Norman

The second annual St.Petersburg Cupid's Undie Run was a total success! St. Pete raised $75,400! Can I get a "Whoop Whoop!" 
Once again the fabulous Katherine was the ringmaster for Cupid's Undie Run. This event would not have been the huge success that it was, if it were not for this tenacious wife and mother of three. For Katherine NF hits close to home. Her middle child was diagnosed when she was an infant. Like Katherine, many of the participants are affected by NF. 
Some are directly affected like myself and my teammate Catie, while other are indirectly affected like the rest of my teammates.

 

photo by Kimberly Norman

 I would like to take the the time now to thank my teammates for joining Angela's Cherubs. You guys cannot begin to imagine how happy and loved I felt on Saturday. I know you could have done anything else, but you chose me! To Chantal and Alexa, my co-works and friends; my cousins, Cat and Carolina; Catie, my teammate; and William, thank you for spending time with my crazy-hyper self!
To my loving and supportive boyfriend, you are my lucky charm, and I love you endlessly! Finally, thank you to Liz and my mom, I know you were not able to make it to the run, but your spirits were with me! I know next year Angela's Cherubs will be attending, maybe even with new faces. 

photo by Joseph Meier

Getting NAKED for Charity!

My cousin Caro and me talking about Cupid's Undie Run. Hope you enjoy watching our video as much as we enjoyed making it!!

Cupid's Undie Run (Part 1)

Next Saturday the 13th of February I will be participating in the second annual St. Petersburg Cupid's Undie Run. I will be running in my undies for a worthy cause. The donations will go towards research to help find a cure for NF.
Now to some being in their teeny-tines is no big deal. But when your body is being taken over by fibromas it is very different. As I have shared in Fibromas and Showing Skin it has become a challenge for me to feel comfortable in a bathing suit. I was not always so self -conscious but unfortunately the more fibromas I see, the less I want to show off my body. Of course, Joe tells me that I am beautiful and that I don't have more fibromas. Maybe he is right, and I do not have more fibromas, and it is all in my head. Or maybe I do have more. Maybe he just does not see them because he does not focus on them like I do.
Still, I will be in my teeny-tines on Saturday the 13th of February. 
I am even more excited because I have a team!!! I will be joined by an amazing group of gals and gents!! I am pleased and thankful for my very brave teammates. Angela's Cherubs is composed of two other gorgeous women that also have NF. One of them being my mom. The rest of the team is comprised of the great people that will not hesitate to fight off bullies.
If you have not joined Angela's Cherubs or donated you still can!!! Remember, this is a great cause!! We all want a world free of NF!! 


I will write post- cupid's Run post after the race. =) 

ANGELA'S CHERUBS   thank you for your gracious donations!!