Wednesday, October 30, 2013

Halloween!


This is my favorite time of year!  The cooler weather, the changing of the leaves, the smells....Everything about Fall makes me happy. Especially....Pumpkin Bread....which I HAVE made, but have yet to indulge in.



I remember as a little kid, how excited I would get for Halloween.  My dad would get his make-up kit out and spare no expense when he would create scary costumes for my brothers.  I was fascinated watching  as my brothers would get bloody scars or fake nails through their heads...

For ME...Halloween isn't about the devil....or Pagan....or darkness.....It's about having ONE night, to go all out -- Dress up and have FUN!  Knocking on doors, getting FREE candy and seeing my kids get soooo excited, as they dump their pillow cases of candy onto the living room floor...(So that mommy and daddy can inspect "suspicious" looking Twix bars *evil grin*

Selecting costumes at my house is a seriously crazy event, which usually starts taking place sometime in August. :)  As my kids get older....The costumes get a BIT more complicated.....

This year, I am proud to present my children:

My poor ZOMBIE BRIDE

SALLY from 'Nightmare Before Christmas'

TINKERBELL or FAIRY.....She can't decide

Yeah....This says it all 

So, I am a Christian mommy who LOVES Halloween.  In OUR family the "bad" part of Halloween doesn't even come to mind.  We are just a bunch of goofballs out knocking on doors to get candy.  THAT'S TRADITION for us....Which I sadly see slipping away.

Last year, our neighborhood looked like a ghost town.  Porch lights off, and just a handful of kiddies walking around....It made me kind of sad.  One house....dumped their entire bowl of candy in my children's bags....because WE had been the only trick-or-treaters for them -- 

I miss the 'old days'....But for as long as I can....I will have HALLOWEEN -- I will decorate and dress up and continue to be the goofy mommy who goes door-to-door with my kids

BATMOM


Happy Halloween!

Thrive On!


Thursday, October 17, 2013

What's Your Excuse?



Okay...I usually don't jump on the headline wagon, but this definitely got my attention.  

I read the thousands of comments, in response to her fitness ad, some calling her "selfish" and a "bully"....while others praised her. 

So, how do I feel about this and what's the point of putting this on my blog?  

Weight has always been an issue for me.  I was chubby being born, "sturdy" growing up and just plain FAT as an adult.  I hated (sometimes STILL hate) the *RAH RAH--I'm ALL POSITIVE - ALL THE TIME* stuff...And I have to admit that 2 yrs ago, I would have looked at this ad, and rolled my eyes, at yet ANOTHER health nut, rubbing it in, that I was just another lazy mom, who didn't care about her body. (I was)  My journey was too long.  I was too tired and angry at life, to feel good about ANYTHING!  And ANYONE who tried to tell me "If I can do it...You can do it" was just another thorn in my side.

I had my wake up call.  And it was a scary one...A year and a half ago, while Bailey was still going through chemotherapy, I stepped on the scale.   My "excuses" had gotten the best of me and I was shocked into reality, when those numbers showed up.  Not shocked really.  More like shamed.  I had done this to myself. And I was the only one who could do something about it.

Today, looking at this ad...Maria Kang is a champ.  A woman  who took control of an eating disorder...And worked HARD to get where she's at.  No where in her story or website did I see a "bully" or a "fat shamer"...

I see a motivator and an inspiration. ...I see a NO EXCUSES WOMAN.

My ENTIRE LIFE has been filled with excuses.  Those EXCUSES got me to almost 240 pounds and I was living a life that was depressing and shameful.  I was killing myself, right before my children's eyes...and I was setting an example that was saying it was okay to let "life's stuff", get in the way of what I wanted.

I am a mom of SIX children...All my excuses are legitimate and sound good.  I have a disorder that causes tumors and extreme pain.  I have hydrocephalus and a brain tumor...I have every reason, to just give up and let life do what its going to do to me....

I was/am dying in 10 different ways.

BUT...I have ONE THING I have control over...The ONE thing I could do something about...My Weight!

Forget genetics for a second....because - in MY opinion, that's just another excuse.  I know I will NEVER EVER look like Maria Kang....But that isn't the point.  She NEVER says, that women need to LOOK like her or BE like her to be healthy....She DOES say that YOUR LIFE is in YOUR HANDS.

My wake up call, was my second chance--

Over the last year and a half...The weight didn't magically fall off me.  I've been working really hard!  I FIND the time.  I FIND the energy.  I FIND the willpower....Even when I feel that there is nothing left to give...I dig deeper...And guess what I find?   MORE!

Finding the time to exercise with my son holding my feet..
with unfolded laundry on the couch, 'cause that's just the way life is

There are truly NO EXCUSES to find a way to get what you want.  That may sound harsh to some, but it's true.  If you want something bad enough...You have to find a way to get it.

THRIVE ON!


Wednesday, October 9, 2013

How Dare You!


So, I get this "anonymous" comment -- Strange how all the negative comments come from "anonymous".

Makes ya wonder.

Anyways, the comment said "How dare you..." Blah blah blah  "show pictures of Neurofibromatosis" blah blah blah "It's shameful that you claim to THRIVE with NF, but depict NF in such a negative way..."

Some other stuff was thrown in there too....But I didn't bother reading it.

How dare I?  Really?  What?  Show the reality of a disorder that is EXTREMELY VARIABLE and so wide-spread, and someone out there would actually benefit from being educated on not just the MILD form of NF, but also the SEVERE forms that exist?

What good would I being doing ANYONE, if I just blew sunshine and roses out there to the world?  I live with NF.  I know the good, bad and the ugly of this disorder.

I WILL continue to uplift, educate and sometimes share in somebodies sorrow when it comes to Neurofibromatosis...THAT'S REALITY....THAT'S part of THRIVING with Neurofibromatosis!

THRIVE ON!
(Bumps and All)

A Life in Exile


PAINFUL: Charmaine Sahadeo —Photo courtesy Phillip Edward Alexander

A life in exile

By Verdel Bishop

Charmaine Sahadeo lives with an incurable disfiguring disease called neurofibromatosis (NF). The genetic disease which causes tumours to grow everywhere on her body has plagued her life since she was a teenager. Now 34, Sahadeo’s battles continue and she now has to deal with a painful ruptured tumour on her upper right leg. 
Neurofibromatosis is “neuro” for nerves, “fibromas” that can grow on the ends of nerves. Anywhere you have nerves on your body you can get the benign (noncancerous) tumours. NF are often seen as raised bumps on the skin. While these skin changes do not have serious medical consequences, they can affect a person’s appearance. Plexiform neurofibromas (which form under the skin or deeper in the body) are also benign tumours. However, these can grow quite large and can cause significant medical problems, and can affect the structure of nearby bone, skin and muscle. In some rarer cases the tumours may become cancerous. Surgery may be needed in some cases to remove tumours.
The tumours may also cause severe pain which in themselves are benign, but depending on their location in the body, can cause other problems such as curvature of the spine, short stature, epilepsy and speech problems. Some patients experience learning disabilities, behavioural problems, and vision and/or hearing loss. There is no cure for the disease. In adolescence, small rubbery lesions, known as neurofibromas start to appear.
It is a hereditary condition. If a parent has neurofibromatosis, then a child will have a 50 per cent of inheriting in, but the majority of cases are a result of a mutation of the gene. Sahadeo’s mother also has NF. Sahadeo is concerned that she has passed the disorder on to her two boys aged 14 and 11. While Sahadeo has faced many challenges over the years and her battles continue; she is unemployed and is now burdened by her worsened condition. She is coping with the pain of the ruptured tumour and prays that it doesn’t get worse. Sahadeo is also concerned that people are not aware or educated enough about the condition. She said people with NF continue to suffer in silence, in most cases with little or no support.
As if having to live with the pain of NF is not enough, Sahadeo is also virtually homeless. Her Diego Martin home caved in four years ago due to heavy rainfalls and she now lives with her mother in a dilapidated shack. 
“It’s hard. I try to cope. I know I look different but I try not to let it bother me and I do what I have to do. I feel like I’m scorned especially when I have to get a taxi it could be difficult because people avoid being close. People stare but I don’t take them on; I have been harassed in the past. I spend most of my time away from the public. It is hard when there is a crowd and everybody starts to laugh or talk about you. But I know that a lot of people don’t know or understand what it is, so sometimes I don’t take it on too much. My children are supportive and they help me a lot. They are not ashamed of me but I still don’t go to their school; I have their teacher’s number so I call her when I need to,” Sahadeo said. 
“I feel a lot of discomfort with this condition. It is so painful. Sometimes it feels like something is jabbing into my leg. I can not touch it; sometimes I get pain right through the day. Sometimes when my leg bumps into something by accident I’m in a lot of pain; I have to be very careful because the upper part of the leg got infected. I don’t know how it got infected. I had surgery about three or four years ago to remove two of the tumours but they came back. I need to have surgery again. There is no cure, the only solution is to cut but they will grow back.” 
Sahadeo recalled: “When I was 15 I started to see little bumps but it took a while to spread all over my body. So I saw the signs and that is how I figured out I had it. My mother has it but hers not so bad. I have two children and I am always worried that they would end up with it. I always watch them and watch their skin to make sure there are no bumps. There is really no other way for me to tell unless I see the bumps.”
“I need a job but no one will want to hire me. And besides, I am in a lot of pain anyway, but still, I will do what I have to do. Sometimes I get angry with the system. But I still get some assistance. I get a disability grant from the government and I get separate assistance for the children and I have a food card. I need a home,” Sahadeo said. 
The Jericho Project has come to Sahadeo’s assistance many times in the past. For months the chariman of the Jericho Project Phillip Alexander, has been championing Sahadeo’s cause, even using Facebook to garner support and compassion for Sahadeo. He said Sahadeo is in need of financial and emotional support. 
“Every year the Jericho Project helps orphans and one of the things we are going to discuss at our next meeting is the creation of an association for people with Charmaine’s condition. They need to access better representation and ways to ease their plight. Since I have met Charmaine I have also came into contact with two other people with this condition and I know the difficulty they face. I am aware that the condition also often leads to social isolation. In Charmaine’s case we have come a long way in getting help for her. The Housing Development Corporation has agreed to provide her with a house. I have spoken with Housing Minister Roodal Moonilal and the Housing Develop Corporation (HDC) chairman Rabindra Moonan and they have agreed to give Charmaine a home. Charmaine lives in squalid conditions in a shack with her mother and she is in a lot of pain. Her mother also has the condition. Things are moving swiftly. Charmaine’s case officer is Myrtle Joseph of the HDC. Charmaine is hoping to get a house in Diego Martin as her children go to school in Diego Martin and it would be difficult to have to move them. Also, transportation is a problem because she is scorned and it is not easy getting to a taxi,” Alexander said. 
To assist Charmaine or to get involved with Jericho Project call 682-2110 or at sales@colyp.com

Tuesday, October 8, 2013

UNSTOPPABLE



That's the BIG question, isn't it?  WHY?  Why Neurofibromatosis...or Cancer...or Muscular Dystrophy...or a zillion other things....

I was one of the thousands lucky enough to see the movie UNSTOPPABLE.  I've heard about it for months...I was even part of the rise against the banning of the promotion of this movie on Facebook and Twitter.

Overall....I LOVED the movie.  Kirk Cameron went against the "norm" and created a truly UNSTOPPABLE film that, I am sure will change the lives of many people who were 'on-the-fence' about their beliefs.

I've asked "WHY" many times during my life...More often since Neurofibromatosis hit our family hard with its relentless blows...There is always something  to worry about...And there have been times when I feel like MY life is just a continuous science experiment, that keeps going wrong.

But...It's my belief in Jesus that tells me...when I am feeling like that....I need to draw closer to Him.

Sometimes...This is impossible.

I'd be a liar, if I told you that every time I feel a negative thought or think I am being cursed, that all I do is pray....and that it all magically goes away....

Faith doesn't work that way.

My belief -- And what I got from the movie, is that there is a reason for everything.

People suffer.

People die.

But- Life is always going on.  Moving forward.

People also heal.

People also leave imprints of their time here, for others to see.

So -- Why do bad things happen to good people?  Well...If BAD things only happen to BAD people...there wouldn't be those awesome stories of triumph and overcoming.  Healing and Restoration.  Faith and Inspiration.

I am HERE for a reason.

THRIVE ON!


Friday, October 4, 2013

Run Run Get Around...

I love Colorado.

We had our first snow fall today and we are again at the doctors...so we got to enjoy the crazy drive.
I swear, I think people completely forget how to drive during storms.

Today's appointment is to check on Bailey's bi-pap.  It's one of those appointments where I just wish we could stay home and discuss stuff over the phone.

We have had appointments every single day this week....And I'm just exhausted.

Bailey got great feedback from our sleep clinic doctor...and has tolerated the bi-pap machine wonderfully.

I'm so proud of her...She has been so good about all her appointments...she doesn't complain at all.

She is the true living-breathing example of what it means to THRIVE!