Five Things I Wish Doctors Knew About NF

 

Five Things I Wish Doctors Knew About Neurofibromatosis

Living with neurofibromatosis means learning how to navigate a body that can be unpredictable. It also means spending far too much time explaining a condition that many medical professionals don't fully understand.

I know doctors can't possibly know everything about every disorder. I don't expect perfection. What I hope for is compassion, curiosity, and a willingness to listen.

Here are five things I wish every doctor understood about living with NF.

1. Neurofibromatosis Absolutely Can Cause Pain

Please don't tell me that NF doesn't cause pain.

I live in this body every day, and I know what I feel. The tumors, nerve involvement, pressure, headaches, joint discomfort, and other complications can cause very real pain. Even when the source is not immediately visible on a scan or easily explained, that does not make the pain imaginary.

When I say I am hurting, I need my doctor to believe me. I need help exploring the cause and finding ways to manage it—not another reason to question myself.

Sometimes the most healing words a doctor can say are, “I believe you.”

2. External Tumors Are Not “Just Cosmetic”

The tumors that grow on the outside of my body affect much more than my appearance. They may become irritated, painful, itchy, or catch on clothing. They can bleed or make ordinary activities uncomfortable. They can also affect how I see myself and how safe I feel being seen by others.

Please do not dismiss these tumors as “just cosmetic” or tell me that I simply have to live with them.

Help me understand my treatment options. Learn how these tumors can be safely removed or managed. If you can't provide that care, help me find a specialist who can.

Wanting relief does not make me vain. My comfort, dignity, and emotional well-being are important parts of my health.

3. Every Person With NF Is Different

Neurofibromatosis does not look or feel the same for everyone. Even people within the same family can experience it very differently- My brother and I experienced NF in many different ways...Heck, we even participated in a study - for JUST that purpose!  www.NIH.GOV

Please see me as an individual—not as a paragraph from a medical textbook or a list of the most common symptoms. When I explain that something in my body has changed, listen carefully. When I tell you that a symptom is affecting my daily life, please don't dismiss it simply because it is not what you expected.

I have spent a lifetime learning the patterns of my own body. I notice when something feels different. I need a doctor who is willing to hear me and investigate alongside me.

4. If You Don't Know, Help Me Find Someone Who Does

I understand that NF is complex and that not every doctor will have experience treating it. It is okay to say, “I don’t know.”

What is not okay is leaving me without direction.

If you are unfamiliar with a symptom or treatment, please help me find an NF specialist or another medical professional who has the right knowledge. Reach out to colleagues. Look for appropriate resources. Help me take the next step instead of sending me home feeling alone and discouraged.

Admitting that you don't have an answer doesn't make you a bad doctor. Being willing to help me find that answer makes you a caring one.

5. Please Be Open to the Possibility That I Know More About NF Than You Do

I don't say this with disrespect. I say it because I live with neurofibromatosis every single day.

I have spent years researching, asking questions, attending appointments, connecting with others in the NF community, and learning how this condition affects my body. My knowledge may not come from medical school, but it comes from lived experience—and that experience has value.

I don't want to compete with my doctors. I want to work with them.

The strongest medical relationships happen when professional knowledge and patient experience are treated as partners. I need doctors who are willing to listen, learn, and recognize that I bring something important to the conversation too.

Thriving Means Continuing to Speak Up

Thriving with neurofibromatosis does not mean pretending that everything is easy. It does not mean ignoring my pain, accepting dismissal, or smiling through every difficult moment.

Sometimes thriving means asking one more question. Sometimes it means requesting another opinion, searching for a specialist, or reminding someone that my symptoms are real. Sometimes it simply means finding the strength to walk into another appointment and hope that this time, I will truly be heard.

I am not asking doctors to have every answer. I am asking them to see me, believe me, and stand beside me while we search for those answers together.

I am more than my tumors. I am more than my pain. I am more than a condition that many people do not understand.

I am still learning, still advocating, and still moving forward.

I am still THRIVING with Neurofibromatosis.

 

Maybe I Am the Normal One

Living with neurofibromatosis often feels like standing in a world where everyone else received instructions on how to belong—and somehow, mine were missing.

People stare. Some quickly look away when I notice, while others continue looking as if my body is something they need to understand. They see the tumors, the changes in my skin, or whatever makes me appear different that day. What they don’t see is the person inside this body—the woman, wife, mother, grandmother, teacher, friend, and fighter who has spent a lifetime learning how to live with something she never asked for.

I know that many people stare because they don’t understand neurofibromatosis. But understanding the reason doesn’t always make it hurt less.

As I get older, my NF symptoms are becoming more noticeable. My body is changing, and sometimes it feels as though neurofibromatosis is demanding more space in my life. With every new symptom comes another explanation, another uncomfortable conversation, and another moment when I must decide how much of my personal story I want to share.

Sometimes I am happy to educate people. Awareness matters, and I want others with NF to feel seen and understood. But sometimes I am simply tired.

I am tired of explaining.

I am tired of being stared at.

I am tired of feeling as though I must make other people comfortable with my appearance.

I am tired of being expected to turn every painful experience into an inspirational lesson.

I am thriving with neurofibromatosis—but sometimes, I don’t want to have to thrive. Sometimes I don’t want to be brave, positive, or strong. Sometimes I want to put down the weight of resilience and admit that this is hard.

Sometimes I just want to be normal.

I understand why people with NF hide. I understand the fear of being seen, the torment of feeling different, and the exhaustion that comes from wondering what others are thinking. I understand why someone might avoid photographs, mirrors, social situations, or new relationships. When the world repeatedly reminds you that you look different, hiding can begin to feel safer than living fully.

But hiding also becomes its own kind of prison.

So I keep showing up.

I show up even when I feel uncomfortable. I smile even when I notice the stares. I speak about NF even when I wish I didn’t have to. I remind myself that my body is not something shameful and that another person’s judgment does not determine my worth.

Still, there are days when strength feels less like a gift and more like a responsibility I never volunteered for. There are days when I don’t want to teach, explain, inspire, or advocate. I simply want to exist without being examined.

And then another thought enters my mind: Maybe I am the normal one.

Maybe there is nothing abnormal about having a body that carries a story. Maybe there is nothing strange about scars, tumors, pain, fear, or change. Human bodies were never meant to be identical or flawless.

Maybe the real problem is a world that has such a narrow definition of beauty that it treats visible differences as something frightening. Maybe the problem is not my appearance, but the inability of some people to look beyond it. Maybe what isn’t “normal” is staring at someone, judging them, or making them feel as if they don’t belong.

I belong here.

People with neurofibromatosis belong in every room, every photograph, every workplace, every relationship, and every beautiful part of life. We should not have to shrink ourselves to make others comfortable. We should not have to hide because the world has not yet learned how to respond to differences with kindness.

THRIVING with Neurofibromatosis does not mean I am happy every day. It does not mean I have conquered every insecurity or made peace with every new symptom. Thriving means I continue to live honestly, even on the days when I am tired. It means allowing myself to feel sadness, anger, fear, and frustration without believing those feelings make me weak.

I am strong—but I am also human.

I am brave—but I am also exhausted.

I am thriving—but sometimes I need permission to simply survive.

Neurofibromatosis is part of my story, but it is not the measure of my beauty, my purpose, or my value. I may never stop noticing the stares. I may never stop wishing, at times, that my life and body could be different. But I will keep reminding myself that I am not the problem.

Perhaps I never needed to become “normal.”

Perhaps the world simply needs to become kinder.

When Goodness Shines Through

 

Sometimes, it feels like genuine goodness has become rare.

We live in a world where people are quick to judge, criticize, and look the other way. Doing the right thing—even when no one is watching—can seem almost extraordinary. There are days when I find myself wondering what happened to kindness, compassion, and the simple act of caring about another human being.

On those days, I think about the preschoolers I teach.

I wish everyone could see the world the way they do.

Preschoolers do not care about the things adults use to divide one another. They do not notice whether someone wears expensive clothes, drives the right car, has a perfect body, or lives a picture-perfect life. They do not measure a person’s worth by their appearance, abilities, mistakes, or struggles.

They simply see a friend.

They offer hugs without hesitation. They invite someone to play because no one should be left out. They forgive quickly, laugh freely, and love with their whole hearts. Their kindness is pure because it does not come with expectations. They remind me that goodness is not something we have to learn—it is something we begin with.

Somewhere along the way, many people lose that innocence.

Living with neurofibromatosis has taught me a great deal about people. It has given me the ability to really see them—not just as they present themselves, but for who they are underneath. I notice who looks away and who chooses to look closer. I notice who judges what they do not understand and who takes the time to listen. I notice who disappears when life becomes uncomfortable and who quietly stays.

Sometimes, that realization makes me sad.

It hurts to discover that someone’s kindness only exists when life is easy or when there is something in it for them. It hurts to feel misunderstood, overlooked, or judged because of something I did not choose. Neurofibromatosis has revealed parts of people that I sometimes wish I had never seen.

But every once in a while, someone’s goodness shines through.

It appears in the person who asks how I am—and truly wants to know. It is found in the friend who sits beside me when there are no perfect words. It shines in those who choose compassion instead of judgment, patience instead of frustration, and love instead of fear.

Those moments restore something in me.

They remind me that goodness still exists. It may not always be loud or attention-seeking. Often, it is quiet. It is a hand reaching out, a thoughtful message, an unexpected act of kindness, or someone choosing to do the right thing simply because it is right.

Maybe we could all learn something from preschoolers.

What if we looked beyond appearances and simply saw the person standing in front of us? What if we invited others in instead of shutting them out? What if we forgave more easily, loved more openly, and stopped deciding someone’s worth before knowing their story?

The world does not need more perfection. It needs more people who are willing to be kind when kindness is inconvenient. It needs people who choose goodness when no one is watching.

Living with neurofibromatosis has shown me some difficult truths about people, but it has also made the beautiful moments impossible to miss. Because when you have experienced judgment, genuine acceptance feels even more powerful. When you have seen darkness, even the smallest light becomes extraordinary.

And when goodness shines through, I see it.

I feel it.

And I am reminded that there is still hope for all of us.

Still Here. Still Thriving.

Still Choosing to Thrive: Growing Older With Neurofibromatosis

I have lived with neurofibromatosis for my entire life, but living with NF has not always looked or felt the same. When I was younger, my symptoms were easier to hide. I could move through the world without everyone knowing what was happening beneath the surface. I pushed the signs of NF into the background...And I got away with this, until my OFFICIAL DIAGNOSIS in 2007.

But aging has changed that...I can no longer push aside the symptoms.

As I grow older, NF seems to demand more of my attention. New symptoms appear, familiar ones become harder to ignore, and my body no longer recovers as easily as it once did. Pain, exhaustion, physical changes, and the uncertainty of what may come next have become a larger part of my life. Menopause and the natural aging process have added another layer, making it difficult at times to know where one struggle ends and another begins...One exacerbates the other. 

There are days when I look in the mirror and barely recognize the body looking back at me. I see the evidence of time, but I also see the evidence of NF. Every new symptom can carry a wave of fear.  The progression of NF seems cruel and unfair.

What am I learning from this?  What's the point of it all?  Why won't God just cure me?

Those questions can be exhausting.

At my core, I am still determined to THRIVE. That word means something deeply personal to me. Thriving does not mean pretending that everything is fine. It does not mean smiling through pain or denying the fear and frustration that sometimes settle into my heart. Thriving means continuing to live, love, laugh, and hope—even when NF makes those things harder.

Some days, thriving looks like strength and confidence. It looks like showing up for the people I love, enjoying time with my family, and refusing to let a diagnosis define the boundaries of my life.

Other days, thriving simply means getting out of bed.

It  also means allowing myself to rest without feeling guilty. It means admitting that I am tired. It means crying when I need to cry and reminding myself that one difficult day does not erase a lifetime of courage.

As I grow older, I also find myself understanding my mom in ways I never expected. She carried her own anger, fear, and frustration surrounding neurofibromatosis. When I was younger, I could not fully understand why she seemed so bitter or why she blamed God for the pain NF brought into our family. Her anger affected all of us, and for a long time, it was difficult for me to look beyond it.

Now, on my hardest days, I understand her a little more.

I understand what it feels like to be angry at a condition that takes without asking. I understand the helplessness of watching the people you love struggle. I understand the guilt that can come from knowing a genetic condition has been passed from one generation to the next. I understand how fear can turn into frustration and how frustration, when carried for too long, can become anger.

But understanding my mother does not mean I have to become consumed by the same anger.

I refuse to give NF that much power.

I will acknowledge the hard days. I will be honest about the pain, the fear, and the ways my body is changing. I will not shame myself for feeling discouraged. But I will also keep looking for beauty. I will keep holding my family close. I will keep celebrating ordinary moments, because I have learned that those moments are often the most amazing.

Neurofibromatosis is part of my story, but it is not the whole story.

I am a woman living with NF. I am also a wife, a mother, a soon to be grandmother, a teacher, and a friend. I am someone who has carried fear and still chosen hope. I have watched my body change and still found reasons to be grateful for the life it allows me to live.

Aging with neurofibromatosis is not easy. Some days, I feel strong enough to face anything. Other days, I completely understand my mother’s frustration and anger.

But even then, somewhere beneath the exhaustion and fear, my strong spirit remains.

I may crumble. I may grieve. I may need to stop and rest.

But I refuse to give in.

I am still here.

I am still growing.

And even on the hardest days, I am still THRIVING!.

Neurofibromatosis, Pregnancy, and Choosing Hope in the Unknown

 Pregnancy is often described as a season of joy, anticipation, and beautiful dreams. But when you live with Neurofibromatosis—or love someone who does—pregnancy can also carry a fear that is difficult to put into words.

Alongside the excitement comes an aching question: What if my baby inherits this condition?

Neurofibromatosis is unpredictable. It can affect each person differently, even within the same family. One person may experience relatively mild symptoms, while another faces tumors, chronic pain, surgeries, learning challenges, or complications that change the course of everyday life. That uncertainty can make the decision to have a child feel incredibly heavy.

The fear is not simply about passing on a gene. It is about wondering whether your child will someday struggle. It is imagining appointments, scans, difficult decisions, and moments when you may feel helpless. It is the possibility of watching someone you love experience challenges you understand all too well.

Then comes the guilt—the kind that can begin before a baby is even born.  I remember, after my own 'official' diagnosis, the weight of the guilt was overwhelming.

You may question whether it is selfish to want a child. You may wonder whether you are making the right decision. If your child does inherit Neurofibromatosis, you may blame yourself, even though genetics are not a moral choice and love is never something that needs to be justified.

These feelings are real. They deserve to be acknowledged, not brushed aside with easy answers or forced positivity.

But there is another truth that deserves space, too: no parent is ever promised certainty.

Every pregnancy begins with unknowns. Every child enters the world with a story that has not yet been written. Parents can make careful decisions, ask questions, seek medical guidance, and prepare as much as possible—but no one can predict every challenge or protect a child from every hardship.

That does not make the fear disappear. It simply reminds us that uncertainty is woven into every human life.

A diagnosis may become part of a child’s story, but it does not have to become the whole story. A person with Neurofibromatosis is still capable of joy, love, laughter, purpose, accomplishment, and deep connection. They may grow up to become an artist, a teacher, a parent, a friend, an advocate, or something they have not even imagined yet.

They are not only their scans, tumors, symptoms, or medical appointments. They are a whole person with dreams, strengths, quirks, talents, and a life that holds endless possibilities.

Living with Neurofibromatosis can also create a kind of strength that is difficult to explain. For me, growing up with a mother who blamed god, blamed herself, and blamed everyone around her, for the consequences of her choices...I also had a choice to make.  Follow her road to the never-ending road to no-where, or make the choice to live beyond the fear- and stop being a victim. 

Living with NF has taught me resilience, compassion, patience, and the courage to keep moving forward without knowing exactly what lies ahead. Those lessons are not easy, and I know- no one would choose the pain that life sometimes brings them. 

Still, beauty can grow beside difficulty.

I like to think that courage is not the absence of fear...But, maybe, courage is allowing ourselves to hope while fear is still present.

For anyone facing pregnancy while carrying a genetic condition, it is okay to feel excited and terrified at the same time. It is okay to grieve the certainty you wish you had. It is okay to speak with genetic counselors, ask difficult questions, lean on people who understand, and take the time you need to make decisions that feel right for you and your family.

There may never be an answer that removes every doubt. Sometimes, we simply make the most loving decision we can with the information we have.

Life has never promised us predictability. What it offers instead are moments—first heartbeats, tiny fingers wrapped around ours, laughter filling a room, and love that arrives larger than we ever expected.

Neurofibromatosis may bring uncertainty, but uncertainty does not mean hopelessness.

None of us knows exactly what the future will hold. We only know that life, even when complicated, can still be meaningful and beautiful. We know that people can face difficult things and still THRIVE.

We know that fear and hope can live in the same heart.

And sometimes, choosing hope in the middle of the unknown is the bravest beginning of all.

THRIVE ON

My grandson-

Jacen Michael

Neurofibromatosis and Menopause

Thriving Through the Storm: 

Navigating Menopause While Living with Neurofibromatosis

 Living with Neurofibromatosis (NF) has taught me that life rarely follows a straight path. Every stage of life brings new challenges, and just when I think I've learned how to manage one set of symptoms, another chapter begins. For me, that chapter has been menopause.

Many people understand menopause as a natural part of aging, but when you also live with NF, the experience can feel far more complicated. Hormonal changes can seem to magnify symptoms that were already difficult to manage. Some days, it's hard to tell where menopause ends and NF begins.

Fatigue has become one of my biggest struggles. The exhaustion isn't simply feeling tired after a long day—it's a deep, overwhelming fatigue that can make even simple tasks feel impossible. Add in sleepless nights, brain fog, and unpredictable emotions, and it can sometimes feel like my body is working against me. *I have yet to experience "hot flashes...but I do feel like sometimes I would be happy sleeping on a bed of ice cubes- While Rich is huddled in blankets.

Then there is the pain. Living with NF often means dealing with chronic discomfort, nerve pain, and tumors that can affect daily life. Menopause has added another layer, bringing joint aches, muscle stiffness, and changes that make my body feel unfamiliar. There are days when I wonder if I'll ever feel like myself again.  I'm lost in a menopause/NF fog.

One of the hardest parts has been the uncertainty. Research on how menopause affects women with Neurofibromatosis is still limited. There aren't many roadmaps to follow or answers that clearly explain what to expect. That uncertainty can be frustrating and, at times, isolating.  My tumors are multiplying - Can I stop this?  Or am I just doomed to accept it?

Despite these challenges, I refuse to let either menopause or NF define who I am.

Thriving doesn't mean pretending everything is easy. It doesn't mean ignoring the difficult days or forcing a smile when I'm struggling. Thriving means continuing to move forward, even when the path is difficult. It means learning to listen to my body instead of fighting against it. It means celebrating small victories that others may never notice.

I've learned that rest is productive. Asking for help is not weakness. Advocating for myself with healthcare providers is essential. Most importantly, I've learned that my worth isn't measured by how much I accomplish on my hardest days.

The NF community has also reminded me that I am never alone. Connecting with others who understand the daily realities of this condition has given me strength during seasons when I needed it most. Sharing experiences, encouraging one another, and celebrating every success—big or small—creates a sense of hope that no diagnosis can take away.

Menopause has certainly tested me. Neurofibromatosis continues to challenge me. Together, they have pushed me physically, emotionally, and mentally in ways I never expected. But they have also revealed a resilience I didn't know I possessed.

Every day I choose hope over fear.

I choose to keep learning about my health, to advocate for better awareness and research, and to support others walking a similar path. I choose to focus on what my body can still do instead of dwelling only on what has changed.

If you are living with both menopause and Neurofibromatosis, know that your struggles are real. Your exhaustion is real. Your frustration is valid. But so is your strength.

Our stories are not defined solely by symptoms or diagnoses. They are defined by our perseverance, our courage, and our determination to keep living fully despite the obstacles.

I am still learning, still adapting, and still finding my way through this season of life. Some days are undeniably harder than others, but every day I wake up determined to keep THRIVING with NF.

Because Neurofibromatosis may be part of my story—but it will never be the whole story.

 

Thrive On! 

                                        One of my preschoolers "decorated" me!

 

 

 

 

Grandma Kristi

 Becoming a grandma for the first time is a journey filled with excitement, love, and hope. From the moment I learned I was going to have a grandchild, my heart grew in ways I never imagined. I dream about tiny fingers wrapped around mine, bedtime stories, laughter echoing through the house, and watching my daughter become the amazing mother I know she will be.

At the same time, this journey carries a different kind of weight. My daughter has Neurofibromatosis, and with this pregnancy comes understandable worry and uncertainty. As her mom, I wish I could take away every fear she carries. I know she's thinking about her baby's future and wondering about things no parent ever wants to have to worry about.

I know how this feels--as I worried for each of my children...And even with them as grown adults- Continue to worry-

But I also know my daughter. I have watched her face challenges with incredible strength, resilience, and courage. Those same qualities will make her an extraordinary mother. No matter what lies ahead, this baby is already surrounded by unconditional love, fierce protection, and a family that will stand beside them every step of the way.

Being a first-time grandma isn't just about holding a new baby—it's about supporting my daughter as she begins this new chapter. It's about reminding her that she is never alone, celebrating every milestone, comforting her through every worry, and believing in her even when she doubts herself.

I don't know exactly what the future holds, but I do know this: love is stronger than fear. Our family has already shown that we can face difficult days together, and we will continue to do so. This precious baby will be welcomed into a family that loves deeply, hopes fiercely, and never gives up.

As I wait to meet my grandchild, my heart is filled with prayers, hope, and anticipation. No matter what tomorrow brings, this little one will always know they are cherished beyond measure. And my daughter will always know that I am beside her—today, on the day her baby is born, and through every beautiful moment that follows.

Becoming a grandma is one of life's greatest blessings. It reminds me that even in the midst of uncertainty, hope continues to bloom, love continues to grow, and miracles arrive in the smallest of packages.

I can't wait!!

MIMI loves you sweet baby...and I can't wait to meet you!

Have Neurofibromatosis? Don't miss your opportunities!

And, as promised, the License Plate picture:

Thrive On!

You Can't Wash Away the Cafe Au Lait

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 bath-time fun with my daughter Rachel.  She had just come in from outside, and was dirty from head-to-toe!  With the bubbles over-flowing the tub, we began to scrub the dirt.

We laughed because the once clean water, became dirty.

After filling the bathtub back up with fresh water and LOTS more bubbles, Rachel noticed the brown spots all over her body.

This was the first time Rachel had asked about the spots....AND the first time I really ever had to explain them to ANYONE.

She tried to wash the spots off with a washcloth and asked why she couldn't wash them away.

In that moment, I knew I wanted to write something about NF....This blog...The book Thriving with NF....And MORE!!

I explained to Rachel, in a simple way....."Those 'spots' are called Cafe' au lait, and you can't wash them away...."

After drying Rachel off, and getting her tucked in for bed....She asked more questions about NF....So sweet -- so innocent.

The IDEA for a children's book was born that night.  I wanted something short, sweet and positive.   But mostly, easy to understand.

If you are interested in "You can't wash away the Cafe' Au Lait" please go: HERE

The link will take u to AMAZON, where u can download a copy.

Follow little Sammy, as she learns to live with Neurofibromatosis.  

Thrive On!!

Hey Kristi...Where Ya Been?

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.

Medically were are in a bit of a lull.  A very good thing, especially with brain tumors!  But, our doctors are taking a very 'hands off' approach, which kind of makes me crazy.  They are supposed to know what they are doing....And trusting this type of treatment goes against EVERYTHING I believe in.  I want a FIX.  I want a CURE.  And I want it NOW!

MRI's every 3 months...And just believing that God has got us in His hands, is the best I can do.

Tumors are scary.  Trying to explain what's happening in our family, to someone who doesn't know the world of Neurofibromatosis is really hard.  

I say "tumor"....they think "cancer" (and yes, I know sometimes with NF, that's exactly what it means)  But generally speaking, NFers have tumors, that aren't cancerous...And that's hard for the average person to understand.

And NF isn't something you can talk casually about.  It's complicated.  Especially for me, living with it, and trying to explain it, while also remaining positive.  I usually get that deer-in-the-headlights type look...As if saying...."YOU HAVE A BRAIN TUMOR AND YOU'RE STILL WORKING...?"

Yes. Yes I do.  

I also have THREE children with various types of brain tumors.

This is OUR life.  This is OUR normal.

Speaking of work.  I got a promotion.  It's a good thing....That has forced me to stretch far outside my comfort zone....Something EVERYONE should do from time to time.  But it has also left me kinda...sorta missing my life BEFORE this job.  

I spend 9-11 hours away from my family....And I truly miss them.  For 2 yrs now, I've handed off all of the 'mommy duties' to my hubby...And he has done a fabulous job...But I long for THAT craziness.  My heart will ALWAYS be a stay-at-home mommy...And I hope that life will fall into making that happen for us again.

One of my New Years Goals is to become passionate about writing again....And eventually get my books out from the cobwebs, and published.  Managing my time, is not something I am very good at...When I'm working, there is -0- time for writing...When I'm home, I am exhausted from working...And when I have a day off...I just want to soak up every second of that time, with things not related to work or the constant medical demands.

Don't worry though....We are STILL THRIVING.  

Applying For And Maintaining Social Security Disability

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 older brother Mike went through, in regards to NF, we made the decision to apply for Social Security Disability.  It was a long- semi-drawn out process, but worth it, to make sure I was securing their health insurance.

All 3 were approved.  Rachel, even qualifying for a Make-A-Wish, due to diminishing vision.

We went a few years, with few NF related complications...Which is GREAT....But in the eyes of the government, it raised flags.

For those of you who understand the world of Neurofibromatosis...this is our life, right...?  Sometimes we are okay....Sometimes we aren't.  And sometimes....we simply get by.

We were sent to "specialists" to determine if Rachel still qualified as 'disabled'.  She had a simple and quick Psych Eval, which was given by some Government-sent 20 yr old..who spent 1/2 hour with Rachel and deemed her "cured of her disability".  

No seriously..that's basically what the letter said.

.CURED???  If only, right?!

Keep in mind, Rachel STILL has vision impairments....At the time of testing, her results were not better...Not worse.  Simply "STABLE"....

But again....Those who understand NF know that STABLE is temporary.  STABLE just means, we hold our breath, until the next scan...Until the next complication.

After the letter....I sent in the form to appeal...and got a fast response that the decision was "FINAL"...and to go through further appeals, I'd need a lawyer.  *sigh*

So, we let it go.

I went back to work, and we accepted the decision.

Fast forward to about 6 months ago...

Due for her 'every 6 month' MRI,  Rachel got some bad news.  An NF-related tumor had invaded her Corpus Callosum.  A tumor JUST like her big sisters.  Inoperable...and required Rachel's big sis, to go through 2 yrs of chemotherapy.

CURED?  Not by a long shot.

So now what...?  After meeting with some people who are knowledgeable with the application process for Social Security, we were encouraged to "reapply".

So we did...And now we hold our breath for the determination.

During this process...We have had to go through a few RE DETERMINATIONS for the other kids as well.  We are currently going through a re determination for Braden...My 19 yr old son...who has also remained stable.

He's had a Neuropsych evaluation....A medical exam...But ultimately...He could also be denied any further benefits, and be labeled as "cured"....

What do you do...?  It has been an exhausting process....But we continue to endure it, because I know that it is the best thing for the kids.

If you are afraid of the process of applying for disability, don't be.  Take a breath and just do it.

I am here to offer any support I can....We are all in this together after all.  

Don't Give Up!

THRIVE ON!

Why Did God Make Me Ugly?

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 make me ugly?"

How do you define UGLINESS?  For me, when I think of that word, it doesn't have anything to do with appearances.  Ugliness is an action.  Same goes for the word BEAUTIFUL.

When I looked at this woman's photo, I didn't see ugliness.  I saw strength.  But I definitely connected with how she feels.

She asked me questions about how I feel about having NF...And if my love life has suffered.

"My husband doesn't love me anymore.  And I find myself pushing him into an affair....Maybe then he will be happy."

My heart broke for this woman, and I have been struggling with how to respond to her....which probably also can explain my hiatus from blogging.

I tend to run from things that make me uncomfortable...And NF, despite my show of bravery on-line...Does make me uncomfortable to talk about.

It's mostly because people just don't get it.  To them, tumors mean cancer....Cancer means sick...Sick means death....And death means sympathy....Sympathy means pity  etc etc etc....

NF is not something that can be talked about casually.  It's complicated, and goes beyond, 'bumps on the skin'.

The thing is  I find myself asking God 'why' a lot.  Why do I have to deal with this?  Is this a form of punishment?  Why do I have to be strong?  Why won't God just wiped this disorder away?

My NF 'isn't THAT bad' right now....But what's going to happen in 5 yrs? 10?  20?  Will my "THRIVING" turn into frustration, anger and bitterness?   Will I be asking if I am still worthy of love?

Honestly I am scared to death of this happening.

But for now...I am trying to build myself up to be strong.  Build up the people who are around me to not judge...But instead LEARN.

I hate that the woman who emailed feels ugly...And feels like her husband doesn't love her.  My advice is to sit down and talk about this.  People fear what they don't understand....And maybe its just that the husband is scared.  So he pushes away.

It's easy to run.  It's hard to face reality.  It's hard to teach.  But in all those things that hard...When we face them....We grow.  And we can grow to love ourselves....Once we love ourselves....Others can start to love us.

THRIVE ON-

Am I Making A Difference?

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 woman come up to me, shake my hand and tell me how much she liked my talk.  She pointed to her daughter - who was sitting by herself, with her baby.  "Can you go over and talk to her...?"

So I did.  I sat with her.  Told her that her baby was beautiful...That NF wasn't the end of the world...That her baby is looking to HER ..And that to HIM...She was his hero!  

I tried.

But....I don't think any of my words helped.  

To HER....This was the end of the world.  To HER, her baby was 'sick'.  To HER, it was all her fault.

I felt bad for her....Mostly because I know exactly how she feels.

I hate NF with so much passion, that sometimes, I just want to throw my computer against the wall, and give up on all this THRIVING crap.

But...

Then I see my kids.  I see them looking at me.  To MY kids...I am their hero.  The one they look to - and learn from.  I see MY attitude reflecting in them.  And THRIVING has become the most important part in how we cope with this diagnosis.

My words may not have impacted this young woman....But....Maybe they did.  All I can do, is set an example....Share my story and live my life.

And on those days where I get so frustrated that I want to give up.....I DON'T.

THRIVE ON.

Today's Periscope. Thriving Even When You Don't Know What You're Doing!

The Challenge of Being Challenged

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, who were SO excited -- I silently prayed that something would happen to get me out of this....

Maybe I wouldn't be tall enough....

Maybe I could pretend to be sick....

Even today, I build in a THOUSAND excuses for just about about everything I do. Don't do. It's AMAZING....The amount of excuses I come up with. Now these are legit....Excusable excuses, and get me out of doing anything I don't really want to do....So I'm not really hurting anyone.

Or am I...?

Have you ever done anything that makes you scared...? But you do it anyway...? Like some unknown force is drawing you to the other side of that scary thing...?

We get comfortable in our lives...At least I do....And the MOMENT I am challenged in any way....I want to fall apart. To withdraw. To run. (In the opposite direction!)

This is true with everything in my life.

Exercise - Speaking - Church - Marriage - Kids (I could go on and on)

I don't like to be challenged....Or taken out of my comfort zone.

Heck, just putting myself out there online is sometimes a challenge. (And I have this computer screen to hide behind)

Challenge is difficult. It's MEANT to be. It's meant to steer you in a direction that makes you grow...And learn....And even sometimes fail (which is where the learning comes in)

When it was our turn to get in the roller coaster car....My brothers sandwiched me, and pushed me forward! I WASN'T READY!! I NEEDED MORE TIME! I WAS SCARED!

I was SURE I was going to fall out......I was sure that the roller coaster was going to get stuck....And that I would need to be rescued.

We sat down in the car...I was belted in....And AWAY WE WENT.

I remember shutting my eyes and screaming. Hanging onto the bar in front of me for dear life! I remember my brother telling me and he wouldn't let me fall out.....He put his arm around me..."See...? I've got you."

But halfway through our ride....BOTH of my brothers hands were in the air.....And I was left with just a belt and a bar to protect me!

I screamed louder and LOUDER....

And before I knew it....The ride was over.

As my belt was released...I opened my eyes...Looked around.....I was okay. I survived.

"Let's GO AGAIN!!" I squealed.

We went on that roller coaster 7 TIMES!

There's nothing wrong with being scared of the challenge – as long as you're willing to feel the fear, and do it anyway. It's all part of Thriving. With NF, with anything.

I may be afraid, but hey, BRING IT!

Thrive ON!

Hurry Up And Slow Down!

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.  Working full-time sure has made things different around my house...And it feels like whenever I get my head JUST above the water...Something happens to make me have t tread water just a little longer.

If you have paid any attention to this Star Wars movie....You know that it has broken records.  It is now the biggest movie ever!

These last 2 wks are a blur -

It's so easy to get overwhelmed ... It's so easy to forget that we need to slow down a little.

The other day, during a CRAZY MAD rush at the theater, my boss, was frantically running around in the back stock room, trying to get things ready....She looked stressed.  She looked angry.

As I pass by her....I say, "Hi ***** How are you...?"  Bleary-eyed she looks at me... "Uhhh....."
I smiled and ask her how her Christmas was.....

She sets down the rolls of cups she had in her arms....Smiles back at me....And says...."It was wonderful...!"  She told me about the quilt she got ...And how surprised she was, that her mother remembered....

S-L-O-W  D-O-W-N!

"How do you do that Kristi?"  She asks  "How are you so easy-going?"  "How is this NOT overwhelming you....?"  (meaning the massive amounts of people the are outside the stockroom)

I just smiled and told her..."They're JUST people seeing a movie..."

I know that everyday will have its end....And I will get to go to bed....and *Hopefully* get to wake up....
Yeah sure....and then come back to the theater...where it starts ALL OVER again.....But....NOW here's the secret....

If you SLOW DOWN....Even in the CRAZY- BUSY times in your life, I have found that life isn't so bad.

Today...As you go out into the world...Take things in....Experience them.  Even the bad stuff, can be turned into something GOOD

I barely remember the 2 years of driving back and forth to the hospital for my daughters chemotherapy...What I DO remember...is our quiet "dates" of milk shakes after we were done.  The meaningful conversations of what she wanted to be when she grew up.

Life is stressful....It's overwhelming...And Sometimes even painful ...But slowing down brings everything into perspective.

Slow Down.  Be present. Make a conscience effort to see the good things in life....And you will find yourself more easily able to:

THRIVE ON!!

The Force Awakens

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 8am...I was working the 'marathon'...Where our theater played ALL of the Star Wars movies...

Every hour, the lines for this movie get moved...Every 2 hrs, a new set of lines filter into the theater. It's madness at its best. And WORST.

This year, I have seen it all. Guns, fist fights, disrespectful guests....I've been threatened and spit on. I've watched police arrest guests, and after being told to 'F-off' by a guest who then promised to meet me at my car after my shift, I've been escorted by our own security team back to my vehicle at closing.

 What makes people feel so entitled about seeing a movie that they can treat others so poorly? What else is going on in their lives that makes me their target of choice?

Where you have great masses of people, you also have great MESSES of people. It's like trying to clean during a tornado...

Humans are truly disgusting...And I am now not surprised with the amount of nastiness I walk into when I am helping to clean a theater. I've cleaned up poop, puke, pee...And other bodily fluids that will not be mentioned....

And all of this leaves me to wonder WHY I keep going back there....

Back to Star Wars...Seriously...WOW. It's the BIGGEST MOVIE OPENING OF ALL TIME and It has been nonstop since Wednesday night....Literally thousands of people flow through our building everyday – It's crazy...and....It's fascinating - I get the opportunity to witness true nerdiness with all of the costumes and props. It's pretty awesome.

The other night I saw a tiny 3 yr old dressed up as Chewbacca and a middle aged woman wearing a Princess Leia inspired gold bikini. Light Sabers, Storm Trooper outfits...And Guests talking to me in Yoda....I feel pretty lucky to be a part of this. In particular - one aspect stands out to me. Years ago, Star Wars nerds were just that - nerds. Outcasts. Now it's cool to be a nerd - and I see it at the theatre every month, whether it's super-heroes, raptors, or Jedi's roaming the halls. The more the world is exposed to what's different, the more accepting it becomes. 

What if they became more exposed to Neurofibromatosis? Perhaps a force for good would awaken among the world as we allow it to awaken within ourselves.

Thrive on! 

Connecting NF Style

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 even smile and wave to driver...Like you know...you have some sort of connection with them....Even though you are complete strangers.  :)

Well...This kid started working at the theater I work at, and I did that..."Hey, something about him is familiar..."  I just started noticing that he and I had something in common.

It's weird.  When you meet a total stranger, who has the same condition as you.  It's a crazy feeling that is hard to explain.  It's like you are friends, before you even speak.

This kid, is 18 years old....Has Scoliosis (an obvious curvature), slightly bigger head, deep set eyes...And cafe au laits spots on his arms....Which were what prompted a conversation about Neurofibromatosis.

I feel sad for this boy...He tells me that he has no one to talk to about what he is going through.  He is the only one in his family who has NF....And his parents are in denial and refuse to take him to the doctor.

We were on break together...And he had his head on the table.  I asked him if he was okay, and he tells me that he gets really bad headaches.

"Is this normal...?" he asks.

My motherly instincts kick in and I slide my chair over to him.  I told him about my headaches...and that he needs to communicate to his parents about this.

He has never had an MRI....And he asks me what they are like....And we spend the rest of our break talking about tumors and headaches.

Part of me whats to hunt down his parents, and shake them...and MAKE them care!  I understand being scared and not wanting to deal with this.  I get the thought of wanting to shove this in the corner and and ignore it.

That's what my parents did.

I get the fear and guilt.  But fear and guilt do NOTHING but make things worse.  Especially when you are using them as excuses.

The other day this boy and I are passing each other at the time clock...He told me that he told his mom that he met a lady at work who also has NF....He went on to say that him and his mom are going to the doctor next week to talk about his headaches.

I was so happy!

He said THANK YOU to me......"For what...?" I asked.

He said...."For talking about NF and not being afraid....For helping me not be afraid...And maybe...for helping my mom not be afraid...."

This folks, is what it's all about--

THRIVING WITH NEUROFIBROMATOSIS!

What's Next?

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.

But...
Telling my story...And helping to encourage others has become the most important thing....And I have found that the more I do it, the more my fears just slip away.

I want to do this more.  Get out there and talk about Neurofibromatosis.  It's a necessity!

2016 is going to be filled with speaking opportunities...And I am so excited for this!  The more we talk about Neurofibromatosis...The more people will accept and understand this condition!

What do I speak about...?

THRIVING!  My message is positive and uplifting, even while addressing serious complications caused by NF.

I speak about being a mother of 6 children, 3 of the children having an NF diagnosis...While also managing my own medical needs, having NF.

Living a life that is fulfilling and meaningful is something ANYONE can do!

If you or someone you know is looking for a speaker please contact me:

kristi.hopkins@gmail.com

Giorgio Foundation PART 2- The Speech

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 their underwear is good advice...The part where Mr. Brady says that it helps the speaker realize that the people they are speaking to, are human, just like them makes sense.

I didn't have time to picture THIS audience in their underwear....I was too focused on not falling on my face. :)

The speech was about my own diagnosis....How I choose to THRIVE, through all of the uncertainties...All of the fear....All of the anger....How I go beyond just 'living' with NF.

For me, I felt empowered on stage.  Looking out into the crowd of several hundreds of people, did not scare me (I was shocked by this)  Instead it made me feel like I was doing EXACTLY what God put me here to do.

All I wanted was to tell MY story.  Impact ONE person.  And leave an impression on people that NF is just PART of who I am.

It was such an honor to be a part of this wonderful event...I was made to feel like an honored guest and for that I wanted to thank EVERYONE involved.  Especially the Borzellino family!

Me And Giorgio at the 2nd Annual Giorgio Foundation Fundraiser

Click HERE to Learn More About The Giorgio Foundation!!