Thursday, January 28, 2010

Thriving Thursday

<---Yup....This is officially how I feel lately!

My headaches have been HORRIBLE these last few days (tis' why I haven't been blogging-sorry)
I don't know what's happening inside my head, and maybe I am a bit afraid to find out....The pain and pressure has made me dizzy, sick to my stomach and extremely irritable! (sorry Rich)

I see my Neurologist next Friday, so maybe I can get some help. In the meantime, I am barely hanging on. The Percocet helps, but makes me feel foggy and loopy......Tramadol seems to do the trick, but I am almost out of those---so what do I do?!!?

At my appointment next week....I am going to beg for answers. I don't know very many people who are walking around with untreated Hydrocephalus. But I did join a group on Facebook for folks that have Hydrocephalus --and do not have a shunt....the group eerily quiet. Maybe I should post and get it going...?

Anyways, my 'Thriving Thursday' just me, at my wits end...and in pain. It's amazing how much a headache can throw everything off balance (figuratively and literally) But even though the pain in my head, is screaming at me to throw over the covers and hide....I won't do that.

I am here....and I am THRIVING.

Monday, January 25, 2010

Motivational Monday


It's tough hearing that something may be wrong with your child. Even though I knew that my daughter was "different", hearing it from someone else made me feel so hopeless. But I was ready...ready to finally hear the test results that basically analyzed my daughter from head-to-toe.

As the school psychologist, Special Education teachers, and IEP group sat across from me, and unloaded the inch thick information to me, I felt the room spinning. I didn't want to hear what they had to say...but I knew I had to for my daughter's sake.

My oldest daughter is 14 yrs old, and she has struggled in school, since the beginning. Year after year we had her tested in all academic areas, to try to get her some help, but she always falls just above the line, disqualifying her from getting any help. Her issues continued to get worse, year after year, this year being the worst yet.

When the group began talking, what they said did not surprise me at all. "Tests don't lie", one in the group said. "We feel that Bailey definitely qualifies for services." (Duh? Ya think?) "Further testing shows.......". I went into a blank stare and just nodded in agreement.

The words swirled around my head like a merry-go-round--"Autism", "Aspergers", "Depression", "ADD". I wanted to run from the room and hide from the fear, that these words brought with them. "No...Not MY daughter!! She just needs some help in school....She isn't Autistic! " My mind was flooded with thoughts, and denial.

But I shut my eyes, and took a deep breath. "Thrive Kristi...Thrive", I thought. Thriving isn't just for me, and my NF... it doesn't stop there. It's so much more than just me. It's everything around me, everyone around me.

My daughter needs me to be strong for help show her that she too can THRIVE, with whatever it is that is trying to stop her from what she wants to do. She is looking to me, to help guide her through life.

As I left the meeting at the school, part of me felt peaceful. Sure we now have this new "block" in front of us to deal with...a new set of diagnoses...but instead of the Block...keeping us from THRIVING, we are using it as a step, to get to where we want to be.

Bailey will be ok. NF, Aspergers, ADD--whatever it is we have to deal with, we will deal with. Nothing will stop us from achieving our goals, and nothing will stop me from trying to be the best mommy I can.

Thursday, January 21, 2010

Thriving Thursday

“Move out of your comfort zone.
You can only grow if you are willing to feel awkward and uncomfortable when you try something new.”
Brian Tracy

Fear doesn't rob you of anything directly. Fear simply creates an uncomfortable physical and mental state. This is a place I have lived in my entire life. Fearful of what other people thought of me having a disorder like Neurofibromatosis.
I was even scared of my NF...After years of denying -- avoiding my own diagnoses, finally accepting it, brought with it, many unknowns. I didn't like it at all, but avoiding the NF wasn't doing me any good.
When I chose to "Thrive" with NF....It wasn't just that I was finally taking responsibility for my health, it was more that I was choosing to show my children, and others, that staying in the fear was not an option. The fear was done controlling me! I wanted to help show people that they were not alone in their world of Neurofibromatosis.

But when I walked into Monique's Salon, in Spokane Valley, the fear hit me hard! I didn't know if the staff had ever seen anyone with Neurofibromatosis. Would they want to touch me? Would they see my bumps and freak out? I was scared that they would see the tumors on me and run the other direction--I was embarrassed.
The women there in fact had never seen or worked on anyone with NF...But I found comfort when the women who were involved in my make-over, truly wanted to know more, and understand what it was I live with everyday. They listened and asked questions about my NF...they were caring with the way they took care of me.

Sometimes, growth, requires us to become a bit uncomfortable. Stepping directly into yours fears, takes a lot of courage, but once you do it, the strength you gain is amazing!
I was made to feel amazing about my body. The ladies were not afraid of me, or the NF. Their loving hands massaged and worked on my body and taught me that not everyone is afraid of what they don't understand.

I wanted to THANK the staff of Monique's Salon....You helped me to be less afraid of what people helped me overcome the fear of the whole "Spa Scene".
I loved my Make-Over day.....Thank you for being a part of helping me grow...and helping me THRIVE with NF!

Tuesday, January 19, 2010

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!!

Sunday, January 17, 2010

Free at last, Free at last.....

Thank God almighty, we are free at last!

Head and shoulders of a black man in a dark suit leaning on a lecturn, with his hands grasping the lecturn's top. Light comes from above and leaves the lower half of his round face in deep shadow. His hair is closely cropped and he has a pencil-thin mustache. He looks up over the reader's right shoulder, his full lips barely open, as if thinking what his next words will be.

My kids came home from school on Friday, excited for the 3-day weekend. When I asked them if they knew WHY we were blessed with an extra day to sleep in, I was surprised to hear them respond with not only that it was Martin Luther King day, but with the reason why we celebrate this man.

Riley, my precocious 9 yr old, proudly stood straight, with shoulders back and told me that this was the man who fought for freedom for black people. "James Earl Ray shot and killed him. And he won a Nobel Prize. He was very important!"

Rachel, my sprightly 7 yr old, piped in and said "ya, and he's the guy, who said 'free at last, free at last, thank you God, we are free at last!' And that means that black people don't have to be afraid anymore!"

Impressed and in shock, I just hugged my girls and praised them for what they had to say about Martin Luther King! Riley asked me why good people have to die, and I told her that sometimes people aren't ready to change...that they are afraid of what the change might mean. So they set out to destroy, anyone who makes them feel uncomfortable.

Wise way beyond her years, Riley responds, "Well, someone needs to change that!" Yes indeed, this kind of thing needs to stop, but sadly, it never will. There will ALWAYS be someone, somewhere who disagrees with change...with progress, but should never ever stop us from pushing forward.

Continue to fight for what you believe in! Fight for change! Leave your legacy behind!

Friday, January 15, 2010

Surgery Update

The post-surgical pain is easing, one week after surgery. It's hard to believe that a week has already passed.
I still feel shooting pain through my finger. I'm not sure if this is normal, but it kind of worries me, because THIS was what I was dealing with before the surgery. The gauze is stuck down on my nail bed, but finger definitely is healing up.

I'm still having pain in my right pinky finger and left foot. It frustrates that the MRI didn't pick up the tumors ... but maybe after we move, I can find a DR. who will take me and the NF on, and we can figure out why I am having so much pain.

I had to take a percocet today....not for the surgical pain, but for my headache. I was scared to take it because part of me felt it was a failure on my part, not being able to deal with the pain. I know I have to get over my fears, and accept the reality of taking medication to treat my symptoms, but it's hard.
I watched my mother struggle with addiction to pain medication, and I saw it transform her from someone who was talkative and playful, to a lifeless, and tired body on the couch.

I am very cautious about what kind of medication I put into my body, but I also need to learn, that sometimes it's okay to take something to relieve the pain.

Thursday, January 14, 2010

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.


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 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'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 find the right combination of medication, to live as normal as possible. And I will continue to fight...and THRIVE with Neurofibromatosis!

Tuesday, January 12, 2010


I'm excited today! I will get to experience something totally new. I am being recognized for 'THRIVING' with this genetic monster. A reality I wake up to every day of my life....a reality my children will face as well.
When I started this blog, my intentions were simple. I wanted to have a place to go to, to get my thoughts and feelings out, but also to let others know, that there was someone else out there, just like them, who could possibly spin their thinking about having a devastating disorder.
Everyone on this planet, has their own battles to fight, their own crosses to bear---but there is nothing worse, than feeling alone. I went 34 yrs, before I ever accepted this, because I was ashamed, and afraid, feeling like I was a freak...and that I would never be accepted as "normal".

Well, I may never really be accepted as "normal"....The bumps on my body, may to some portray that I AM in fact a freak.....but you know what? I'm okay with that! In fact....I THRIVE with knowing I AM different!

So today, as other people's hands touch my body...applying make-up, and snipping my hair, I will enjoy every second of it! I AM THRIVING....I always will be! Thriving is what makes Kristi.....Kristi!

Monday, January 11, 2010

Importance of Participating in Research

When I was first diagnosed with Neurofibromatosis, the last thing on my mind was to tell the world about it. I, in fact did the opposite. I did every thing I could to hide from the world, and hide, as long as possible, my NF.

But you can only run for so long, before reality and the truth catches up with you...and it did for me, in a big way.

It took a lot for me to accept the reality of having to deal with having this life altering disorder. I didn't like it...I didn't want it...And I didn't think it was fair! But after I chose to break down the walls of denial, and build up some power to fight back, I began to accept it, and even embrace it.

When my children began showing signs of issues, I began devouring as much information as possible about Neurofibromatosis. I impressed and sometimes scared my husband with how much information I was taking in.

I started support groups and websites, I even enlisted in on-line surveys and signed up for NF studies that took me across the country. I wanted to stand up and shout to the world that I had NF, and then teach them about it!

Doing all of this has help me grasp my reality, and the reality for my children. I have learned so much and can now be an advocate for them, and possibly for many others, who are struggling to accept their own reality.

NF does not have to be the end. I know that the pain it causes can be extreme and in many forms, but you must fight through it. Finding something other than your own pain to focus on has truly helped me get through this....and one of the best things I have done, so far was to participate in research and since NF is so broad, there are many areas that Drs are very interested in.

Last July, my brother and I took part in a study about NF variability. We were treated like royalty, while we underwent 3 days of MRI's, blood draws, dental consults, photos, imagry and one on one genetic counseling! Try getting all that, with your insurance coverage!

It was amazing, the doctors who were doing the study truly cared about the person in the study, not just the results. I finally found a place that understood everything I was trying to communicate, for so many years. It was like -- I found someone who spoke my language!

Six months after that study, I was invited (yes invited) back to have surgery performed by a well known plastic surgeon. (Tummy tucks not included this time...darn) I stayed 6 nights this time and ended up meeting a woman who I will be life long friends with.

So many good things have come from participating in NF research and reaching out to others. I hope to be a part of future research and do plan on getting my children involved.
Please, reach out, get involved!
for more information, or contact me directly at

Friday, January 8, 2010

Ouch Ouch Ouch!

Well surgery is over, and my hand is bandaged up. I am very happy it's done and I know this short term pain, will get me to long term pain free (or so we hope)

The surgery was supposed to be Wednesday, but was postponed, because of technical issues. The Dr. came in and apologized and told me it was all on for Thursday at noon.

Before the surgery, Sonia and I went to visit the pediatric unit here at NIH. I met with one of the ladies that may be taking my kids on, in one of the studies! They really treat their people good here, and I would LOVE for my kids to experience this!

It wasn't long after we got back, that the stretcher to take me to the surgery came for me. I put my fancy gown, and my tights on and climbed aboard my chariot!

While in the holding area....the anaesthesiologist talked to me about the types of meds he could give to me, and we opted for a "digit block". He used a local anaesthetic and injected into my fingers...numbing them...totally. Then ... slowly ...adding a relaxing medicine into my IV.

The operation started with an incision and removal of the nail. Then, the Dr  hunted for the glomus tumors.

I was in 'Twilight' most of the time...talking about Red Lobster...the drifting off to sleep.

The numbing lasted all night, the pain started this morning.

I am supposed to be getting pics (we'll see)

My hand felt nothing as the procedure took place...And was bandaged up and I was wheeled back to my room.  The pain meds took care of most of the pain...and I could already feel a difference in how my hands felt.   AMAZING

Wednesday, January 6, 2010

Yup...It's Wacky Wednesday!

Well, folks....Surgery was cancelled until tomorrow. Something happened with paper work, and with these kinds of things, every 'T' needs to be crossed.
I'm not that bummed about it.

In my room at 5NW I am enjoying my roommate, Sonia, who also has NF1 AND glomus tumors. We clicked right away and have been hanging out. She makes me laugh--I'm so glad I met her!

I met with a pain specialist today...We talked about my daily headaches and backpain. It was soo nice to be able to have someone who listened and really truly understood what I was saying.

Acupuncture and stress reducing therapy was noted and I will follow up with that.

God Bless

Tuesday, January 5, 2010

Tuesday Update

Man, I slept good lastnight! So good, I slept right through the alarm that was quietly trying to buzz me awake. I checked out of the hotel this morning and waited in the lobby for the NIH shuttle to come pick me up.

I raced to make my 7:45 appointment and got my IV....

An MRI of my left foot was hopefully going to pick up the reason why my left toe is in so much pain. I always find it funny, how when you are told to NOT move something or to stay still...all you can think about is moving. :)

The MRI of my toes was difficult--"Reeeeee*Clunk*CLANK CLANK CLANK" I kept wiggling my toe and they had to take several of the images over again (grrrr)

Anyways....after the MRI, I headed to the cafeteria for some "atkins friendly" eggs and bacon. YUM!

I met with Dr. Moshyedi and Dr. Stewart about my surgery and the MRI findings. The MRI did pick up the tumor in my left hand, but the findings on my right hand and foot didn't show any significant issues. (even though I have severe pain)

The Drs described the surgery and I DID ask for pictures--so stay tuned!

And I did ask s'more questions:

*How often should people with NF have MRI's? Should everyone be given a baseline MRI?
----Unless the person is showing symptoms, or signs of issues...No "baseline" MRI is necessary. If a person has had a baseline MRI, future MRI's are not needed, unless there something found.

*What are the best pain meds for NFers?
----Neuropathic pain meds are the best.

----There are several that work well....some need to be tried to see if the work FOR YOU

*Hormones causing tumor growth?
----It has be known that pregnancy and menopause do cause tumor growth. And also for men, puberty is a known time for the onset of tumor gorwth.

*As for hystorectomy's usually a low dose hormone replacement is given.

*I asked about scalp neurofibromas and the best way to remove more than one tumor....
---If the tumors become painful, they are fairly easy to remove.
As for removing more than one....It's up to the DR, but surgerical removal seems to be the favorite option. Where the Dr cuts the whole tumor out. Several can be removed at once.

*Chances of adults developing brain tumors?
---NF is progressive, so it's possible.
(Me personally developed a brain tumor as an adult)

*Best treatment for plexi's?
----Depends on the DR. Debulking usually becomes necessary (surgery) Chemo is usually NOT an option, unless the Drs feel it necessary. ( I know this is vague......but I think the Dr was getting kinda tired of the questions )

-----The other questions that were asked about specific children and NF complications....I have the DR looking at these questions, and HOPEFULLY he will come back with some answers..(Stay tuned)

I am in the hospital right my hospital bed. Surgery is set for tomorrow morning. I will update when I can :)


Monday, January 4, 2010

Motivational Monday

I checked into the hotel. It felt weird to be there alone. I was given a warm chocolate chip cookie and actually walked to my room on the 11th floor of the Double Tree Hotel. The room was warm and inviting and there was a HUGE king side bed, just for me!

I am already feeling the aches of missing my family. They called me six times, but I feel so far away from them. It's almost as if my children give me life support. Without them, I feel empty and lost.

I still managed to enjoy the quiet bliss of the hotel room. :) But my mind kept drifting to what my family was doing back at home.

I laid back on the bed and tried to think of a time where I have been on my own, like I am right now. I laughed when I couldn't remember a single moment in my life, where I was completely, alone.

I guess I can call myself lucky....I have always been surrounded by people, children mostly. So I plan on soaking this all up, and enjoying it.

Today was filled with so much! Blood draws, chest xray, ekg, MRI and now I am exhausted! I met with Dr. Stewart and Sarah and we talked about the tumors in my hands and any new things that have crept up in the last 6 months.

I mentioned the headaches, and the hydrocephalus.

I also asked some of the questions that my friends on Facebook have asked....and here are SOME of the answers to those questions:

---MRI's ARE the best way to diagnose a Neurofibroma tumor growing inside the body. X Rays do not normally pick them up.

---There is no real proof that NFers have a higher likely hood of developing breast cancer. Dr Stewart said there was ONE article written on this topic. Chk out some info here .

---YES--there is a connection with NF and IBS (Irritable Bowl Syndrome) Chk out some info HERE I know I have issues with IBS and constipation. Ugh!

---Link between NF and Multiple Sclerosis? Yes. Click here

---Cancer and NF...The lifetime risk of cancer in a person with NF1 is estimated to be about 7%.
The best thing you can do is see your DR regularly and pay attention to your body and your tumors

Suggested screening for people with NF1 or at risk for NF1 includes:

  • Yearly examination by a doctor familiar with NF1

  • Yearly eye examinations, beginning in childhood (may become less frequent in adulthood)

  • Yearly blood pressure monitoring

  • Developmental assessments in childhood, as needed

  • Other evaluations (such as imaging scans, like CT scan or MRI), as needed for symptoms

Screening recommendations may change over time as new technologies are developed and more is learned about NF1. It is important to talk with your doctor about appropriate screening tests. In some areas, comprehensive NF1 clinics may be available to help with coordination of medical care.

I will get more answers to the questions ---be sure to chk back!

Tomorrow I will be admitted to NIH and get set for the surgery on Weds!

Thank you all for your wonderful support--God Bless