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!

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

Thrive On

Living with Normal Pressure Hydrocephalus

I found out about my Hydrocephalus in May of last year. I finally had some answers as to why I had been having so many headaches and unbearable pain.

But in reality, all that finding out about my Hydrocephalus did, was leave me with more questions. Why wasn't this found sooner? Why, even though I would cry when I'd see the Dr, wasn't something done? How am I walking around with this, when most people have had several surgeries, and shunts installed. These are questions I still have today...and even my Neurologist and Neurosurgeon can't answer them.

My Drs tell me that I have had this my entire life...and have "compensated". I guess my larger sized head, isn't just because I have more brains than others. (ha ha ha) ;)

2009 gave me an overload of information, with very little answers, and it frustrates me so much, that there isn't a "fix" for me. But just like having no "fix" for Neurofibromatosis, I have just accepted that sometimes your struggles are set before you, so that you truly learn the value of life...and I have learned that.

I try my best to live everyday, the very best I can. I am trying to leave a legacy behind that is inspiring and positive. I don't want my children to remember their mommy as someone who was in pain and always complaining about what she has to deal with.

My life is a blessing--NF, Hydrocephalus and all that having that means!!

Thriving Thursday

I have suffered from headaches since I was a child. I never complained about them to my parents, because I saw what my brother went through, due to his headaches.

I never wanted to end up with Neurofibromatosis, and in some way, denying it, made me feel better. Hiding from the NF was all I could do, to help make things better for my mother.

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When I was at the NIH, for m surgery, I was visited by a pain specialist to talk about my constant headaches. (what triggers them, what makes them worse, and what kinds of meds make them better)

I have not found anything that takes my headaches away completely, in fact even with the strong migraine medication, I find little, to no relief.

I take Topomax at night before I go to bed....and I have really not noticed any change in my headaches, but something suggested by the pain specialist I just tried this week. The Dr. suggested that I keep a headache journal...I have never done this, but she told me that it could help figure out what is triggering the headaches. Or possibly find times of the day, where I need to try to stop stress before it happens (hahaha)

So Monday and Tuesday, I really wanted to find out if the Topomax was helping me, so I stopped taking my 50mgs, and wrote down every pressure and every pain I felt.....Wednesday night, I took the Topomax and did find a distinct difference....Today, I didn't wake up with a headache, like I did Tuesday and Wednesday morning.

Keeping a Headache journal has helped me--so far to figure out that my meds DO HELP, but also I have found that late in the afternoons are when my headaches are at their worst...so finding ways to lift some of the stress, is something I am working on.

Sometimes pain is a mystery. Sometimes, the answers are hard to find...and sometimes it's up to YOU to find the best way to help alleviate your symptoms. Medicine is not perfect....it's not a "cure all" answer...And I have found, that sometimes it is necessary.

I may have these headaches for the rest of my life, so it's important I learn to manage them. My Neurosurgeon does not think a shunt, for treating my Normal Pressure Hydrocephalus is necessary...but she also has not given me much hope for treatment for the pain I am in.

So I am on a quest to find the answer....to find the right combination of medication, to live as normal as possible. And I will continue to fight...and THRIVE with Neurofibromatosis!