Thursday, October 9, 2014

Teenage Life with Neurofibromatosis


Life is hard.  Being a teenager is awkward and filled with hormones and emotions that run wildly rampant...Often sending teens into feeling depressed, angry...even, in some cases suicidal.

When I was 14 years old, I attempted suicide.  I fumbled through my parents bathroom drawers and found a package of Nyquil Liquid Gels.  There were 6 pills left.  I was SURE this would do the job...So I desperately popped the pills out of the foil, into my hands and swallowed them all as I stared at my reflection in the mirror.  I didn't think.  I didn't care.  I was desperate.  And I just wanted my pain to stop!

"No wonder they call me names!"  "I don't blame them for hating me..."  "I hate you Kristi!"

My symptoms of Neurofibromatosis were so mild back then (relatively)....But enough that the other kids KNEW I was different.  I KNEW I was different....But since doctors told me and my parents that I DIDN'T have NF....No one knew WHY I wasn't fitting in...Or why I just couldn't be "normal"!

There were no answers back then as to why I couldn't keep up in school.  Why I wasn't understanding the material being taught....Or why my body, was "freckly" and "dirty looking".

Today...We are raising 6 children.  THREE of whom happen to be FULL-BLOWN teenagers!

Two of those teenagers also have Neurofibromatosis....And life is definitely different for them.

There are no set of rules for ANY teenager, let alone ones who face the challenges that come with having a complicated/progressive disorder like Neurofibromatosis-- But there are things that I have learned along the way, that have helped.

First, and most importantly....Let your teenager in on what is happening!  KNOWING what they have, whether it's Neurofibromatosis, or any number of life-long heath issues is the key in to helping OTHERS understand, and more likely to accept them, which will in turn, help your teen accept themselves.

It wasn't my parents fault that NF wasn't diagnosed earlier (I was 34 years old and pregnant with my 6th child, when I was 'officially' diagnosed)  Nor was it their fault that I was horribly bullied...But they did miss vital clues, that could have saved me from a lot of the physical and emotional pain I was experiencing...

When it comes to my children's health.  ALL OF THEM....Even my 7 year old, who has been diagnosed with VITILIGO -a skin condition in which there is a loss of brown color (pigment) from areas of skin, resulting in irregular white patches that feel like normal skin...KNOWS what is going on with their health.

While my now 18 year old daughter was diagnosed with a brain tumor, that required IMMEDIATE surgical action, to put in a port, for chemotherapy...There were no secrets, and no sugar coating things.  SHE KNEW every-single-action, we as parents were taking....and SHE had input, and opportunity to express how she felt about what was happening to her.


If only...I had felt safe enough to TALK to someone, when I was kicked...and spit on....When girls in my gym class poked and made fun of my birth marks, and "bumpy skin"....How different would my teachers have treated me, if they understood that I had a learning disorder...and wasn't just "LAZY and INATTENTIVE"....?

Pay attention to your teenager!  Stay involved with the school and your child's teachers!  ASK THEM QUESTIONS about how they are feeling.....

Growing and changing into young adults is difficult all by itself....But when you add all the things that come with having Neurofibromatosis (tumors, birth marks, freckling, deformities, amputations, learning challenges, emotional issues, social problems....Not to mention - a higher-than-normal amount of doctor visits....)  Things can get a little rough for your teen....And being able to be open and honest with them about what they are feeling is SO IMPORTANT....Remember- that it's not just YOU going through this...It's THEM too!

Let your teen FEEL what they FEEL.  Try not to make them feel like they should just deal with it ...without being able to get emotional.  Allow them get be Angry...Sad...Whatever....And give them ways to cope....I know there have been countless days, where my daughter Bailey has become very upset with having NF.  Life is "UNFAIR"...She HATES what her body is doing....And feels hopeless and confused....


VALIDATE YOUR CHILD!!!!  Let them know you are there for them!!  Those feelings are part of the coping process!

Joining a support group, FOR TEENS going through the same thing HELPS BIG TIME!  At first, my daughter was resistant to the idea of talking to "strangers" about what is happening...But - over time - this has been HUGE in helping her through some pretty tough stuff!

WWW.CTF.ORG has been AMAZING!  Bailey has gone to camp a few years in a row, and connected with kids her own age, that also have NF....Building those relationships has been a very important part in helping her know that she isn't the only one going through this.

Also...As a parent...YOU should have a way to process what is going on as well.  It's tough being a parent, watching your child go through a diagnosis -- It's confusing, heartbreaking and emotionally exhausting!  

You may feel GUILTY---ANGRY---CONFUSED
(I know I have felt ALL of these feelings)

YOUR FEELINGS ARE VALID TOO!!!

You, as a parent have a responsibility to guide and lead your child - and help them become the best they can be...But they can't do that, if YOU aren't the best YOU can be.

YOU...have to go through the process of accepting this, just like your child does....So learning ALL you can about whatever the diagnosis is...is extremely important!


While doing this, I know personally, that it can be overwhelming and scary...But - TRY - to keep things in perspective.  Not everything you learn about the diagnosis will necessarily happen to your child....GOOGLE is not the best way to learn...And always shows you the worst-case-scenarios of images and stories...So, getting your information from OTHER parents and families is the best way to learn...Not only ABOUT the condition...but also how to handle what is happening.



***Don't be afraid on 'what ifs'!  Ask questions!....And get involved! -  Find out if there are support groups...Or fundraising organizations for your particular diagnosis....Taking an ACTIVE ROLE will help not only YOU....It will also show your child that THEY TOO can not only accept what is happening....BUT they will also THRIVE!


THRIVE ON!!

Tuesday, October 7, 2014

Guest Post- Rosie Watts- Helping Paul

I love when I am contacted by people out in the community who are making a difference!  Today I am proud to share the story of a young man named Paul.

*From Rosie Watts- "Thank you so much for this opportunity Kristi. Here is the blog: I have also attached a video of Paul and some of the boys doing music at the new inclusive school :)"


Hello everyone,

I would like to thank Kristi for the fantastic opportunity to share Paul's story on her blog. I think the motivation Kristi has for helping people is fantastic, you really are very inspiring.

My name is Rosie Watts, and I have been working in Ghana with children with special needs during my summers from University. I worked for 6 weeks this year in Kumasi Children's Home, where I built a sensory room filled with specialized activities for the children with special needs. I have also been helping to renovate the school to make it inclusive for every child with special needs in the home.

One of my main current charitable projects in this home is helping a young boy, called Paul. He has a diagnosis of neurofibromatosis. Paul has been in the Children's Home for around 5 years, he was abandoned there when his face and head began to grow abnormally, mostly on his right side. Since then, his head and face have continued to grow abnormally however physically and cognitively, the rest of his development has occurred seemingly as normal. It is not known exactly how old Paul is now but the home suggest between 9 and 12 years of age. The excessive deformities of his face and head have seemed to develop gradually over time and over the past two to three years have begun to crowd and obstruct his vision to the extent that he is now operating as fully blind.

 An Image of Paul at school when I took him this summer. 

As soon as I met Paul in summer 2013, I fell in love with him and he was the individual who inspired to return to Ghana. He is the most amazing, positive young boy despite his condition. He loves cuddles and kisses and lots of attention, which the children in the home often do not get. Every morning when I arrived at the home he would come running up to calling my Ghanaian name ‘Ama, Ama’, we would greet with love and it would put a smile on both of our faces. Paul now attends school which he absolutely adores and he is really thriving in many ways.

Displaying IMAG0698.JPG
Mine and Paul's morning greetings. The smiles say more than words could ever say. 


When I was in Ghana this year I took Paul for various medical check-ups such as CT scan and am currently using my trusty team over in Ghana to continue this, I am in the process of arranging for Paul to get a biopsy to determine whether his condition is benign or malignant. I have now received the scan results back and have sent them to multiple neurosurgeons and professionals specializing in neurofibromatosis, as well as a range of support groups. I am in the search of information to increase my knowledge of the treatment that Paul needs and also for a neurosurgeon and a team of Doctors relevant for Paul who would be willing to operate on this amazing young boy.

Furthermore, I am looking for support in fundraising for this project, if you would like to be involved in this, email me at helpingpaul@hotmail.co.uk

For more information on Paul and the other work of Helping Paul please take a look at our website –
http://rosiewatts4.wix.com/helpingpaul
Or our blog –
http://helpingpaul.blogspot.co.uk/

Thank you everyone for reading about mine and Paul's story and helping us on the journey we are to embark upon together.
I love Paul so much and miss him everyday being here in England, but this only drives even more to get Paul the medical care he needs. With the determination and love that I have, I really feel that this is achievable.


video

   

Wednesday, October 1, 2014

40 Things About Turning 40.




1.  This was a scary age for me.  I remember when my dad turned 40... He had an "Over-the-hill" party and I was thinking..."Wow...He's so old!"

2.  This is the age my mom was, when her NF really became obvious...So this just worries me a bit.  NF will do what it's going to do....But I'd be lying if I said I wasn't scared.

3.  My wrinkles....Are no longer "laugh lines"....They are true honest-to-goodness WRINKLES!   My 14 yr old daughter came up to me the other night...Saying "wow...u have a lot of dimples.....Wait....those arent dimples, they're wrinkles..."  So yeah.  I got wrinkles.

4. Even though I am 40....I FEEL 20.  Part of this is because I am no longer 242 pounds....Losing weight has been the one of the best things I have ever done in my life.

5.   I have children with a sense of humor.....

6.  I understand my parents A LOT more now....Then I did 10, 20 years ago.  And I'm sorry for ALL I put them through. 

7.  I actually plucked my very first grey hair.

8.  I get called Ma'am A LOT. 

9.  AARP cold called me the other day....

10.   “The first forty years of life give us the text: the next thirty supply the commentary.” ~Arthur Schopenhauer

11.   I know what I want from life...But still not sure how to get it.  But I have the faith and determination to still keep going for it!

12.  I have always fought for what I believe in...Being 40, I am hoping people will take me more seriously.  Maybe.

13.  I have a very serious urge to create a 'Bucket List'.  Nothing too crazy....But GEEZ....There are some things I really want to do!!

14.  No body questions me when I say "I'm exhausted."

15.  I ordered an "adult drink" for my Bday....and didn't get carded.  

16.  Realizing that MOST of my friends are still in their 30's.  :/

17.    I honestly do NOT care what other people think of me.  Like me?  Hate me?  That's your choice and I am not about to change who I am, to get friends.

18.  After 40 years and SIX kids....I can no longer "hold it" when I have to go to the bathroom!  -sorry- (wait... no I'm not!)

19.  I used to obsess over the news.  Now...I rarely know what is going on in the world.  Which has actually been a GOOD thing.

20.  I have this weird thing, where I just want to have a yard sale and sell all the crap that I used to care about.

21.  EVERYTHING just costs way too much.

22.  I have known this forever...but life is really controlled with how much money you have.  It just becomes increasingly depressing the older I get.

23.  Accepting that my SQUISHY belly will forever be my reminder that I actually grew SIX human beings inside me!

24.  All the heart - throbs actors that I crushed on in my teens and 20's are REALLY OLD NOW!

25.  I can STILL move fast!  I can get myself and 6 kids ready and out-the-door in 15 minutes or less! (only if I HAVE to though, just sayin')

26.  Speaking of fast...I run a faster mile at 40, than I did when I was 15.

27.   I bought my first pair of Spanx.  

28.  I still laugh when someone farts.  Hey...Just 'cause I'm OLD...doesn't mean I have to be mature. :P

29.  I remember when I was a kid, and we had 2 channels to choose from -- And I always managed to find 'something' to watch.

30.  I'm old enough, that the "bad stuff" I did when I was younger.....Can't be found by searching GOOGLE.  *whew*

31.  I bought my very first Mu-Mu.  And it's rather comfy!

32.  I think I need Bi-focals.  I might as well get that chain around my neck too....Just so I won't lose my glasses.

33.  I have an almost 19 year old and almost 17 year old.  That's just frightening!

34.  My Drs are now wanting to run all sorts of tests on me...Mammograms, colonoscopys....YIKES!

35.  Realizing that in 11 Years...ALL of my children will be adults...*tears*

36.  Fear of death.  I seriously worry about what life would be like if/when I die.  And it scares the crud outta me.

37.  I pluck A LOT of stray hairs. :/

38.  Everything gives me heartburn. 

39.  I forget where I put things ALL THE STINKING TIME!

40.  HAVE THE BEST FAMILY EVER.  LOOKING BACK AT MY LIFE, I CAN HONESTLY SAY THAT I FEEL SO BLESSED AND HONORED TO HAVE SUCH AMAZING PEOPLE TO SHARE THESE YEARS WITH. 


Friday, September 26, 2014

Guest Post- Mesothelioma Awareness Day



Mesothelioma Awareness Day


I am all about AWARENESS.  Especially for Neurofibromatosis....But when someone contacts me, who has stumbled across my blog, asking for help with awareness for something they are dealing with I am happy to help.

I met Heather Von St. James through my blog.  Heather is a cancer survivor.  A true fighter and advocate for Mesothelioma. Please visit her blog - http://mesothelioma.com/heather

I have to admit...I don't usually blog about things outside of my world of Neurofibromatosis, but Heather's story inspired me so much, and her fight for awareness was familiar to me. 

Heather was diagnosed with Mesothelioma at the age of 36 - and given just 15 months to live.

Mesothelioma is an aggressive form of cancer that attacks the lining of the body cavity, specifically, the lungs.  This type of cancer is caused by Asbestos- (a fibrous building material that is used for insulation)  Research has found that breathing in the minuscule asbestos fibers over long periods causes physical and metabolic changes in the body, leading to certain cancers. 


Eight years after being diagnosed, and undergoing a life saving surgery, that required the removal of her left lung, Heather has beaten the odds, and is now fighting to give Mesothelioma a face.  

Awareness is very important, it gets people talking and helps people understand that while YOU may not be affected by something - You can STILL DO SOMETHING to help someone who IS.

Please go to http://www.mesothelioma.com/ to read more about Mesothelioma

Thursday, August 28, 2014

Get Whipped 4 NF


The challenge was born on August 23, 2014

After seeing the success of the Ice Bucket Challenge for ALS...I KNEW that it was possible for SOMETHING to be done for Neurofibromatosis.  The NF community was begging to be heard and desperately in need of the kind of attention that was being given for ALS...Something I knew very little about...That is....Until people across the country began dumping buckets of ice water on their heads.


It's a phenomenon....Something simple, fun, fairly harmless....That took off!!  I watched in amazement when my sons karate school 'took on' the challenge, standing on ladders and filling buckets-- So simple!

I understand that the ice water dumped on you, is supposed to simulate what it is like for those living with ALS...and what their muscles and nerves go through, as the disease progresses....

But I couldn't come up with anything that would help someone understand what it is like for someone living with NF....Aside from the GREAT ideas floating around like using sharpie marker and coloring on your face...to get people to know what it's like to be stared at....To be different....

Now whip cream really has nothing to do with NF....Except, it is bringing people together!  The laughter and smiles I have seen, as this 'challenge' grows, is AWESOME....And if all this challenge does, is bring a few happy moments into peoples lives...Then I would say that is a successful challenge!

It's simple....If you haven't been 'nominated' ....Then START!  Simply video yourself - saying who/how NF affects your life....OR who talked to you about NF...Then SPREAD THE FUN!!!  SMASH--SMEAR--RUB--SQUIRT whipped topping all over your face!

Don't tell me that it doesn't look like fun......

Reggie Bibbs and Lou Congelio

 Meg Leaf

Tracy Grgeorash-Brennan
Manitoba Neurofibromatosis Support Group

Lyndon Demers
Manitoba Neurofibromatosis Support Group

FUNN!!!!

My Mommy

Bailey Boo

My daughter Rachel

My daughter Riley

CHANGE HAPPENS NOT BY WAITING FOR THE PERFECT TIME....
BUT BY DOING SOMETHING -- NOW!!!!!