Wednesday, September 30, 2009


Today has left me feeling lost and bewildered. There's nothing more frustrating then spending two hours of your time, going back and forth with a doctor, only to have them leave you with more questions then when you went in there.

I, in fact have Hydrocephalus. But the doctor can't guarantee a shunt would improve the symptoms I have been experiencing (debilitating, daily headaches) She feels that I have ..."adjusted and compenstated" for my hydrocephalus. (which if compensating means having headaches, that would bring the average person to the ER, I think that is HORRIBLE HORRIBLE news)

Also, my Cisternogram came out "abnormal". This was the testing I had done last week, in which a nuclear isotope was injected into the lumbar space in my back (it's basically a spinal tap)
I was monitored over several days.....the drs were checking to see if the isotope was being absorbed or staying trapped in the brains ventricles. And Taaa daaa, it in fact DID stick around in my ventricles longer then it should have.

Scrambling for answers, and wondering about what in the heck is going on.....we phone the Neurologist and was told by her to be seen by the Neurosurgeon, to be evaluated for a shunt. In the meantime, the headaches did not let up. I have been taking the meds and doing everything I can possibly do.

When you are sick and you need help, you are supposed to rely on your doctor--someone who is knowledgeable, and who really cares about you.

I'm not sure where to go from here. But I know that my head (hydrocephalus and all) will remain high. I will not give up. I will fight until someone hears me.

After a Neurological exam, at the Neurosurgeons-- I found I am losing hearing in my left ear. I will follow up with this, and get a good hearing test. I also have a Visual Field Test scheduled for Monday Oct 5th. The Neurosurgeon told me, that if the visual field test shows pressure and changes in vision , a shunt may be the answer (that just left me with more questions) But I guess if I got a shunt due to vision changes, it could restore and improve any losses....but I'd still have the headaches.

Spin spin spin

We'll update as we can.

God Bless and thanks for the support!


Doctor and Health Care Facts

Wacky Wednesday

With all this talk about our frustration with the health care system, I thought it would be fun to post some funny stuff about doctors and our lovely health care system! Hope you all have a GREAT Wednesday!

**Did you know, that patients who are treated with respect and dignity, are more likely to follow medical advice? (real It's true! Patients who have had a bad experience with their doc, are less likely to fill prescriptions, or follow the medical advice. Thus leaving them, sick AND frustrated.

**SEVEN THINGS YOU SHOULD EXPECT FROM YOUR DOCTOR.......If you don't get this, it's time to find a new doctor.
  • Confidence
  • Empathy
  • Humane
  • Personal
  • Forthright
  • Respectful
  • Thorough
  • **(I'm not sure about this one...but it has proven true for me) Surgeons, are taller and usually better looking than other doctors. There was a study done by the University of Barcelona that showed more "average looking" male doctors becoming physicians, and taller, better looking male doctors becoming surgeons. (Just watch the medical TV shows, they pin it right, most of the time) LOL

    **A Nationwide survey showed that Psychiatrists, are the LEAST religious, of the physicians. Despite this, these doctors usually ask the most questions, pertaining to religious beliefs, to better understand their patients.

    ** More than 5% of all US doctors (those who admitted it anyway) Smoke.

    **70% of the Medical doctors writing prescriptions for Medicare patients, flunked the exam, on how to do it safely and properly. wow

    **52% of licensed medical physicians in America take psychotropic drugs every week. Harvard medical school

    ** The US is rated #1 in the world for degenerative diseases and #20 in life expectancy.

    ** 300,000 patients Americans are killed in hospitals each year, as a result of medical negligence----And get this--5600 deaths per year for the Vietnam war! USA Today Ralph Nadar

    **Heart disease, cancer and stroke are the 3 top killers in our country. The 4th being misuse of prescribed drugs. (USA TODAY)

    Wacky facts, huh?


    Tuesday, September 29, 2009

    Getting Doctors to listen

    Turn-it-Around Tuesday

    If you ask someone to marry you and they looked away and told you that they needed to think about it. To give them a week and they will send you a letter, with their response...How would you feel?

    A doctor/patient relationship is a marriage of sorts. You put yourself out there in the most vulnerable of ways. An intimate trust is extended, every time we step foot in the doctors office.

    YOU are the Doctors managers, in a sense. You have to express how much time you need from them. I walked into my Neurologist, ready to put my brave face....The here comes "THRIVING KRISTI" to leap TALL buildings in a single bound! Attitude came out. I was out to prove something, and that was my first mistake.

    Call it martyrism, bravery or just being someone who has dealt with pain, her entire life. I wanted my doctor to see....that despite all of my issues, I was okay. I didn't communicate fully, the level of my pain, so how was she to know?

    Several ignored phone calls later, however I was at the end of my rope. The "urgent" tests were taking a month to order, my pills were not being re-prescribed, and I was left feeling really dejected.

    I wanted to rewind time, and go back to the office visit I had. I would tell my Dr. about my constant and debilitating headaches. My dizziness. Lethargy. I would cry and beg for her to help me. I would show the true pain I am in, on a daily basis.

    My frustrations turned to fear and anger, when the MA told me, that I would have to wait 1-3 weeks, for a letter in the mail, instructing me what to do next. "THIS ISN'T GOOD ENOUGH"...I told her. Her dismissive response was to have me go to the ER, if I thought I was that bad off.

    Uncaring, under trained, overworked medical assistance, I get it. There are days when I have so much on my plate, that I don't think I can handle anything else. But I still treat people like people. I wonder if in all training doctors or MA's go through, they lose a piece of their heart.

    To that MA, I was just a number on a chart. A piece of paper, among a stack of call backs. It's very sad, the way some doctors offices run their business. THEY are there for US, not the other way around.

    When my hubby heard how upset I was, after my talk with the MA. He called the Drs office and left a message, explaining how long we have waited for the tests, results and calls backs.....and talked about going to the media with our story, if we didn't get a response.

    ---We got a personal call back from the Dr herself, within 3 hours. How's THAT for service?

    This is MY health we are talking about. This isn't some game of cat and mouse. I was tired of being pushed aside. I am determined to be heard. I'm sick of Drs who tell me, that my NF is not that bad....or that NF doesn't cause pain.

    The health care system scares me to death (I hope not literally) and I pray for changes. I pray for these people in the medical field to realize that we are all the same. We need to take care of each other.

    Wouldn't be nice, if we could all have a "McSteamy", or "McDreamy"...or heck, even a team of the ones on HOUSE, who spend all their time trying to diagnose and figure out what's going on.

    I know there are caring Drs out there...I've met a few of them.....and I know I can't realistically have my own team of doctors....but it would be nice, if courtesy, respect and acknowledgement were commonplace at the doctors office.

    Sunday, September 27, 2009

    Support Groups Rock!

    Motivational Monday

    Whether it's a mental condition or a physical condition, finding a group where you feel comfortable and safe is very important. When you find someone who shares the same condition as you, a bond begins to form.

    I know for years, I felt like mine was the only family in the world affected by Neurofibromatosis. I almost felt like I had to hide the condition, because I knew if I didn't, I wouldn't be accepted.

    Now that I have "come out of the closet" with my NF, I have opened myself up to a whole new world. I have met hundreds and hundreds of other families, who are struggling with the same issues.

    I think groups like Facebook, MySpace, NiNG etc, are fabulous for connecting lost souls. People are desperate for that one thing that will link them to another person.

    So, if you haven't already, join a group...there are thousands of groups that are already started. Or, you could start your own. I have created THIS GROUP on facebook, and also the NING GROUP - When you make connections with others dealing with the same issues, you feel less alone, or isolated. When a mental or physical condition is diagnosed, it can bring with it, feelings of depression, anger, fear etc...and having a group of people who understand, can make dealing with it, a little easier.

    Not only does a support group help YOU deal with YOUR situation, in time, YOUR situation can help someone else. If you asked me 3 yrs ago, where I would be and what I would be doing with my life....It for sure would not include THRIVING with NEUROFIBROMATOSIS! I've come a long way, in accepting my condition. I'm so glad that Thriving with NF has taken off, and touched so many people!

    Perhaps you are just finding out about NF, or learning about a new diagnoses in your child....(or yourself) I know, first hand the flood of emotions that come with that. You actually are dealing with a huge trauma. A "loss" of sorts. It's a loss of everything that you wish could be. The death of a dream. A support group can help you reel it back in, and help you hold on to those dreams.

    How do you manage this diagnoses? How do you cope? What will my future be like? Well....What I have come to learn, is that I am NOT my diagnoses. My diagnoses, is NOT ME. It will not control me, or shape my future. But, I would not have believed this, without the support of those around me.

    It may seem at surface level...that I am all about Neurofibromatosis, with T-shirt sales (fund raising for, websites and blogs...but that would be wrong. What I am about is helping others see through their diagnoses, to something more....something bigger. Supporting and helping people not just LIVE.....but THRIVE with Neurofibromatosis.

    God Bless

    Thursday, September 24, 2009

    Freaky Friday

    Are you ready?

    Months of waiting....Years of pain. The tests were ordered and I was really excited to to finally have the answers to so many questions. But now that the tests are over...I'm really scared

    The first key to accepting your test results, is to understand them. I have gotten many phone calls with results that have confused and upset me.

    It's very important to get a clear picture of what your results are telling you.

    I remember, getting my kidney results. The CTScan showed calcification, but also indicated tumors in my lungs. The nurse who called me, I'm sure did not expect me to keep her on the phone so long....but I did....I asked questions.....I was tired of feeling like crap. Sent for more tests, that came out okay, but boy was I put through an emotional roller coaster.

    Doctors sometimes forget to speak English when talking to their patients, their "tech talk", confuses and scared people. But this is about YOU. Slow your Dr. down....ask him/her to slow down.

    With my Neurologist....She quickly spatted out "lipoma, hydrocephalus and ventricular shunt".....Whoaaaaaaaaaaaaaaaaaaaa. SLOW down~~~

    I always bring a notebook with me to every doctors appointment. Whether it be my own, or one of my kids. I write down everything! I am learning to ask questions about everything!

    This is all about you...start understanding what's going on with you!

    I know this is a bit scattered....but it's my Birthday...and I didn't really feel like getting too deep in topics today.

    With these test results of my own, I plan on knowing everything, before making any decisions. I am scared....but I am educating that fear.

    Have a great weekend!

    Wednesday, September 23, 2009

    Thriving Thursday

    "Why is my daughter here, why has she survived? Somebody forgot to tell her, she was supposed to die."

    A story of hope and perseverance. I have seen this family on TLC and Oprah just had the family on her show the other day. I watched in awe as this little girl, who is full of spirit, never letting her condition slow her down.

    Her talk of the future, wanting a boyfriend and a family of her own, was just precious. "I can be anything I want to be", was her response to questions about what she wanted to be when she grew up.

    Shiloh Pepin, continues to overcome odds and stun doctors. "We've always understood that she's supposed to be here," Shiloh's mom said. "When nobody else has believed it, we believed it, because it's just the way she is.

    No matter what the Doctors say, or what statistics note in books....there is nothing stronger; no medicine or magic cure, stronger then faith and the human spirit.

    Never, never, never, never give up
    - Winston Churchill

    Tuesday, September 22, 2009

    Whacky Wednesday

    Nuclear Brain Scan

    I started my 4 day Nuclear brain scan. I couldn't really prepare myself for what was going to happen. I've been nervous about this test for a while....and rightly so!

    The morning started early....Hubby drove me down to the clinic and we sat waiting for 1/2 hour before we were called back.

    I changed into a gown and met with the anesthesiologist. They went over the procedure and got me into position.

    I laid on my stomach and my back was washed over with iodine. It was cold and felt good. But my exposed back, made me feel very self conscience. I hate being exposed in any way, and being surrounded by Drs, just made me cringe. These tumors make me feel horrible about my body.

    The Dr shot me up with some numbing medicine, that stung like a million bees. With the xray machine in place, the Dr inserted a 8 inch needle into my spine. He checked the spinal pressure (which was within normal range) then injected the nuclear medicine into my spinal space.

    It hurt so much. The electric shock type sensation, tensed up my body, and made me feel sick to my stomach. I was assured that this was normal.

    When the Dr was finished, I rolled onto the other bed and was wheeled to recovery. There I stayed for the next 3 1/2 hours!

    The Xray tech came and got me, to take pictures of my head. I experienced my first spinal headache....this happens when spinal fluid leaks out of the spinal column.

    The brain pictures took about 40 minutes.....No real results yet.

    More Xray pictures tomorrow.

    Thanks for all the support ...I love you all!

    Monday, September 21, 2009

    Turn it around Tuesday

    Today at Rachel's Ophthalmology appointment, we sat nervously as Rachel read the charts. She did this a month ago, only to have the Dr, give me the news that Rachel's vision is getting worse and worse.

    We were told last month, that Rachel could be legally blind, by age ten. The news hit us hard, but all we could do was to watch and wait.

    This appointment was very important. We have been patching and using the drops as consistently as possible. I noticed, quite often that Rachel would tip her glasses and look over them. She told me she sees "better" without the glasses. What we found out, is that she doesn't see "better", but it takes less work for her to see, and it's more comfortable without them.

    Even with Rachel's complaints....we made her wear her glasses. "Keep your glasses on", we'd constantly remind her. It seems our persistence paid off. Today's visit, showed an improvement in Rachel's vision! It was a slight improvement...but we will take it!

    Before this appointment, I began to feel fear....but what I am trying to do, when I feel this feeling, is to pray harder.... To ask God to come closer to me. Tell God, I need Him. I went in this morning with Rachel, expecting a miracle. ( I even Facebooked it ) I was ready to receive.

    Even David felt fear as he faced Goliath. He faced his fears head on, knowing God was the one who would protect him.

    Always believe....never give up.

    I may not be posting much this week....I will be in and out of Brain Scans. Praying for answers!
    God Bless

    Motivational Monday

    I have spent most of my life being fearful. Sometimes, I can't help it. I worry about this NF, and how it is affecting my life. I hate it so much sometimes....and I hate even more, that I can't do a thing about it.....Or can I?
    One of my favorite quotes is by Erica Mann Jong, it states:"I have not ceased being fearful, but I have ceased to let fear control me." Fear can consume you, taking the control away from you...but only if you let it.

    So much time has been spent being fearful of my future and playing the "what if" game. I give up my control and let the fear take over. Worrying constantly about my health, my children, money, our home. The fear of the future brings anger and resentment with it. Then I am consumed with the darkness, finding it so hard to find my way out.

    Taking back my control has not been an easy thing to do.....even today, I worry about my upcoming medical tests......The Nuclear Brain flow test...I'm scared about the needles in my back.....the radiation....the side effects.....the travel to and from. On one hand, I am happy that something is FINALLY being done, then on the other......the stinkin' fear. "What if".......they find something REALLY REALLY wrong, and are unable to "fix" me? "What if".......this will require surgery, and time down?..who will help with the kids?...and ....the meals? and the house.....? I worry if my husband will be able to handle things while I am needing to be down.
    FEAR....LOSS OF CONTROL.....DOUBT..... (Reel it back in will be okay) (((BREATHE)))

    It takes work (more mental than physical) to decide to trust in God. Isaiah 41:10 says “Do not fear, for I am with you; Do not anxiously look about you, for I am your God I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.”

    With everything you do, choosing to trust and have faith in God is something we all face. But once you place your faith in HIM, the fear goes away. I have felt it many times...when I let God in, the amazing peace that comes over me, helps me feel protected and less afraid....less alone.

    I wish I could stay in that place all the time....but....I keep doubting, and lose trust. With all the problems NF has brought to our family, I quickly get overwhelmed. I spin in an uncontrollable downward tumble.....How easy it is to forget who holds the real power and control.

    I am but human.....I don't always feel like THRIVING. There are days when NF wins. Times when I cry for my children, and the problems that await them. Days when I don't want to get out of bed. But the thing is......I do get out of bed......I wipe the tears away, and I move forward.

    Thursday, September 17, 2009

    Freaky Friday

    Not your typical FREAKY FRIDAY!!

    Today....I want to tell my sweet girls HAPPY BIRTHDAY!

    Brooklyn turns 2 yrs old!
    And Riley turns 9 yrs old!
    Mommy loves you so much! I am so proud to be your mom! You are so beautiful and make me soo proud!


    Wednesday, September 16, 2009



    "EEwwww, get him away, he has a disease!"....My son recounted his day at school. "Then he pushed me against the locker and told me I was "disgusting". The kids surrounded me, laughing and pointing."

    "I don't like taking my shirt off Mom. But they make us in gym class. The kids always laugh at me, when they see my marks." All I could do was hold him. Letting him feel, his feelings.

    Flashbacks of when I was younger, fluttered in my mind. I remember, like it was yesterday. I was walking home from school, when some boys began throwing rocks at me, from behind. "Why don't you look like the other girls?" They yelled. "You're so weird!" A rock was thrown again and hit the back of my head. I felt the rage building inside of me. I was crying and began walking fast and and faster. "Dear God, make them leave me alone!", I prayed.

    My NF hadn't even really begun to show yet, but I was different. I was the short-haired, chubby girl, who wore glasses. I never fit in, with kids my own age....but I was so desperate to find a place, that I would soon find myself mixed in with the wrong crowd.

    I continued to hold Braden, telling how sorry I was, that his feelings were hurt.

    School bullies are everywhere and no matter what the "school rules" happens everyday. Kids get this rush of power, when they feel they can control another person's emotions. They think it's cool to be feared.

    My talk with the school the following day, tried to assure me that this was NOT true....How the school has a "no - tolerance" bully rule. Well Golly Gee! Since it's a rule, then it must NEVER EVER happen, cause everyone obeys rules......

    Braden had come to a point last year, where he was calling me from school on nearly a daily basis. He would tell me he was sick....and would actually make himself throw up, just so I would come and get him, and take him home.

    On the drives home, he would perk up and ask to go to McDonald's....

    The frequency of these calls, and the way Braden would react after being picked up, became so routine, that we began to question him. It took a while for him to open up and finally tell us what was happening at school.

    Kids who bully, aren't going to do it, where the teachers can see. With Braden, the kids would do it in the bathrooms, or on the soccer field. Braden was tormented and teased. Bullies latch on, to anything THEY see as different. It could be NF, being short, chubby, having a limp.....etc. My son reacted in the only way he knew, would get him out of the situation.

    As I look back, I may have missed some key signs.
    According to

    Some signs to look for:
    • The child comes home with torn, damaged, or missing pieces of clothing, books or other belongings.
    • The child has unexplained bruises, cuts or scratches.
    • The child seems afraid of going to school, walking to and from school, riding the school bus or taking part in organized activities with peers.
    • The child appears sad, moody, teary or depressed when he or she comes home.
    • The child frequently appears anxious and/or suffers from low self-esteem.

    If you suspect your child is being bullied, remember to support your child, inform others and take action.
    • First, focus on your child. Be supportive and gather information about the bullying. Tell your child you are concerned about him or her and ask questions.
    • Contact your child's teacher and/or principal. He or she will probably be in the best position to understand the relationships between your child and other peers at school. Ask the teacher to talk to other adults who interact with your child at school to see if they have observed students bullying your child.
    • If you know your child is being bullied, take quick action. There is nothing worse than doing nothing, and bullying can have serious effects.

    Be an informed parent. Stay involved with your kids.

    More info from

    Children Who Bully

    Many children engage in bullying everyday. Although each child is different, those who bully other young people do share some common characteristics. Here are some things to look for:

    Common Characteristics of Children Who Bully

    • Impulsive, hot-headed, dominant
    • Easily frustrated
    • Lack empathy
    • Have difficulty following rules
    • View violence in a positive way
    • Boys who bully tend to be physically stronger than other children.
    There is no single cause of bullying among children. A host of different factors can place a child at risk for bullying his or her peers. However, it has been found that children who bully are more likely than their non-bullying peers to come from homes with certain characteristics.

    Family Risk Factors for Bullying

    • A lack of warmth and involvement on the part of parents
    • Overly permissive parenting (including a lack of limits for children's behavior)
    • A lack of supervision by parents
    • Harsh, physical discipline
    • Bullying incidences at home

    Tuesday, September 15, 2009

    Wacky Wednesday

    Who will Inspire you!?

    I hate the fact I caught the first episode of Season 8 of The Biggest Loser, while eating junk food. Dang it!

    Today's Wacky Wednesday, find me awkwardly facing the truth, that I am unhealthy. Not only am I dealing with a chronic genetic disorder called Neurofibromatosis....But I am also dealing with another chronic disorder called being fat! I hate it....I hate feeling the way I do.

    If I can fight NF ... and be a Hero for this....Then why can't I do it for my weight too? What am I so afraid of?

    Being fat takes a lot of effort. Not only does it tax me physically....It drains me emotionally. I'm exhausted all the time. .. and very frustrated. I am always on a diet, trying this and that. Counting calories, keeping track of points, Low-carb, no carbs....uggghhhh the crazy merry- go- round of dieting has me always thinking about food, which kind of misses the point of it all, right?

    Just like with the NF....My weight is a part of does not define me...but it sure does try to.

    Writing everyday, is really hard. My head is hurting a lot lately.....I'm having severe headaches everyday. I'm looking forward to the tests coming up. Finally I am getting the help I need. I had to do sooo much much complaining, to get these Drs to listen to me....and now FINALLY.....something is being done.

    Happy Wednesday....Thank you for all the support. XXXX

    Monday, September 14, 2009

    Turn it around Tuesday

    I brought our son to the Genetics Doctor today....I cringe every time I have to see this woman. She is cold, and really ticks me off with her drab look on life. I am thankful we only see her eveery 6 months.

    We went through family history, pregnancy and the issues Braden has been having. Dr. Martin reviewed the MRI results, and told me she wasn't optimistic about the "mental future" of my son. Nice phrasing, Mental Future....

    Who is she to tell me about my son's mental future? How dare she put my son in a box and slap a label on him.

    For years I have listened to doctors, and have taken what they say as the final answer. But that time is over....Who will stand up for my kids, if I don't? I looked at her and asked why she generalizes NF. With this disorder like Neurofibromatosis being so variable, I wondered how she could possibly know what my child's mental future would be. She had no answers, just general statistics.

    I told her that parents who come into her office, are seeking not only a diagnoses of certain disorders, but they often are searching for some kind of hope...something or someone to give them a guided hand through darkness....and that the only thing I got from her was a label. One that I refused to have my son wear.

    I have a close friend who has also visited this same doctor. Her son, was diagnosed with a heart condition. After leaving the office, this mother was drained of hope, and filled with fear.

    Yes, it's the Drs responsibility to inform us of illness, and give all of the possible outcomes, but it's not their job to instill fear in their patients. We put our trust in these people, and just want to be treated like we are human. What about telling us of the ones who defy the odds of the typical diagnoses? Why not offer resources and places to go, to find others, who can help us find the hope we so desperately need?

    Her response to me was for me to join a support group....Yeah okay. Very good advice, and I recommend this to anyone who is dealing a fearful position in life, to find support. But what I also recommend, is to not take your doctors word, as the final word. What they know, they learned from books, and general statistics. Slapping a label on their patients and filling in the check marks and sending us on your way, is NOT a sign of a good Dr.

    Fight back. Ask questions. Don't be afraid to talk to your doctor. If you are like me, and got some bad luck with doctors, kick and scream until you are heard! Find someone who will listen...because there are Drs out there who really do care (thanks NIH)

    Sunday, September 13, 2009

    Motivational Monday

    "The Talk"

    A good friend of mine recently got news that his son "officially" has NF1. Even while he may have known what the results of the genetic testing were going to be, it's hard when news like this becomes a reality.

    I understand, and there's not much one can say, when news like this comes their way. All I can really do, is offer support.

    I've been down this road. The Dr's disconcerting tone has handed me this news a few times. But I walked away, each time, stronger. My head held a bit higher, because I wasn't going to accept THIS as the end. This wasn't it for us! It's difficult to accept the reality of a life long genetic disorder, but what gets harder, is when to choose to tell your child about their diagnoses.

    Every child is different and there is no clear answer for this. But WHEN you tell them, is not as important as HOW you tell them.

    Something to keep in mind, when choosing to discuss this, is, are you focusing on the problem...or the solution? We don't want to project our own fears on them. We need to educate, without scaring them.

    Another thing to remember, children don't need long ellaborate, exlainations about something that will be apart of them for the rest of their lives. What I have experienced, is, the more simple you are, when explaining an illness to a child, the better.

    "Neuro-toesis", Rachel calls her disorder, is not completely understood by her... but she knows she is different...special. We usually discuss NF, as we drive to the doctors. "Where we going today mommy?" My answers usually tell my child the destination and what we expect to happen while we are there. "Today, honey, is the eye Dr. ....Do you remember Dr. Shey? She is going to look at your eyes....make sure everything is ok." I sometimes get questions from her, but usually she just goes with the flow.

    Children take their cues from us. If I am uptight, scared, resentful, stressed or angry about NF...then how do I expect my children be? I grew up in a home where my own mother told me, that we had NF because God hated us. I'm not about to inflict the same message on my kids.

    Despite what my mother told me...I feel we are blessed, because the NF has made us slow down and appreciate life. It has taken down a road that is scary, but has taught us to hang tight and stay close to God.

    So my plan for telling my children about NF, is a lifelong one. One that will be honest, and age appropiate....One that will educate, and make them feel safe. One that won't overwhelm, or judge them.

    Thursday, September 10, 2009

    Freaky Friday Facts


    *About 46.2 MILLION Americans are without health insurance! (about 10 million of those people are CHILDREN!)

    * About 20,000 American DIE every year, because they don't have insurance. (or can't go to the DR. because of the lack of insurance)

    * 1/3 of those that are uninsured, suffer from some kind of chronic illness. That's stuff like diabetes, cardiovascular disease, high blood pressure etc.

    *Medical bills are responsible for 60% of the bankruptcies in the US.

    *And what's interesting 75% of the above mentioned HAD HEALTH INSURANCE!!

    *For an average family....About 5,000 per year is spent on health insurance. This does not include deductables, co-pays and out-of pocket.

    All of this info was easily found, just by typing questions into Google, reading and researching....I find it so sad, that so many people go without good / quality health care, and are left to die....This is America....I sure hope GOOD changes are in store for everyone!


    Wednesday, September 9, 2009

    Thriving Thursday

    Some people think that thriving means being strong; keeping feelings locked in and carrying on like a barbarian. I personally see doing that as denial. With THRIVING, for me, comes acceptance, embracing the existence of whatever it may be that ails you.

    When you accept the existence of an illness, you are not accepting ITS power...You are accepting YOUR power to do something about it. Using that power to teach others, sharing experiences, and getting the word out.

    Seeing the right Doctors and receiving proper treatment..Is using your power....It's YOUR right to fight for your health. And sometimes you have to fight hard. I had my first MRI in MAY 2009. I JUST received the results of that scan AUGUST! The scan showed Hydrocephalus, swollen ventricles and a 4mm (non NF mass) I was told by my Neurologist that I required several tests, and a possible shunt. (This was 2 wks ago!) I am on 2 different medications, with some weird side effects....and have called my Neuro several times, only to be ignored. See? Fight hard! While I cant do anything about the missing months, I am now firmly in control of my future....I'm going to keep calling....keep fighting.

    Whether you have NF or MS or MD or hundreds of other health issues - acceptance trumps denial...And I shamelessly accept, that I have NF. In fact, having NF has made me into a much more stronger, caring, sympathetic, peaceful person......who will fight hard for what she believes in.

    Sure, there are times when I don't feel like fighting, don't feel like thriving. Sometimes I think I'm in the ring with Mike Tyson, getting knocked out, over and over again. With Braden's, Rachel's and now my own health issues, I often find myself extremely overwhelmed.

    I cry out for guidance, only to be met with more challenges. Some days I feel lost, and the easiest thing to do, would be for me to give up. But me giving up, doesn't just involved ME....It would mean giving up on my friends.....I look around and see my life surrounded by people who care about me....who are cheering for me to keep going. Who could give up, with life cheerleaders like that?

    Tuesday, September 8, 2009

    Whacky Wednesday

    My tag line is 'Thriving with Neurofibromatosis', however lately, after some extensive tests, I have found I have much more on my plate.

    After a visual field test, showed decrease peripheral vision, and MRI showed a 4mm brain tumor, as well as hydrocephalus....I am thinking that I may need a new tag line.

    Maybe a Check list type tag line:
    THRIVING with :
    Brain Tumors

    I do find it kind of WHACKY....that 2 of the 4 things on that list have little to do with NF, the tumor - I was told is not related to NF, which is most likely what is causing the brain swelling and extra fluid--- regardless....I choose to Thrive through it all. I won't let this or anything else beat me.

    We all have our own "check lists" or baggage...that we deal with and carry around every single day....but it's HOW we deal with it that counts. Are you Angry? Bitter? Whiney? Do you blame others? Or yourself?

    I have spent time doing all of these....and It has taken me a long time to realize how much time I was wasting. I am truly happy with my life.....all of the "problems" have made me strong. All of the strength, has made me a believer! I believe in miracles....and will fight to Thrive.

    Happy Wednesday!

    Monday, September 7, 2009

    Turn it around Tuesday

    He was born, and placed on my belly. It was the most magical thing I have ever experienced. The warm, wet body, of this new life now released from my own.

    He was absolutely perfect. Even with being born 6 wks pre-mature, he was doing so well. I examined every bit of his 21 inch body. All 10 toes, 10 fingers, brown hair; with a little calic right in front, and the bluest eyes, I have ever seen.

    My baby boy was quickly whisked away, to be cleaned and assessed by the nurses. His agar's were perfect at first, then went steadily down. I remember his daddy, Troy was trying to decided whether to be at his side, or mine.

    The nurses called for help, then the respiratory team came racing in. out. The room fell silent, as my doctor finished cleaning up the birth scene and assembling the bed. I soon found myself alone. I looked out the window, it was barely 5 o'clock in the morning and I could see the sun just touching the tips of the mountains.

    I was exhausted from 21 hours of labor, and found myself drifting into a deep and dreamless sleep. I remember feeling so peaceful and warm.

    I was jolted awake by Troy's hand on my arm. He was sobbing. He told me that I needed to come see our son. The wheel chair was waiting next to the bed.

    When we got to the NICU, I was confused. My son was so big and healthy. He was a 7 pounds 1 ounce, 21 inches can he possibly be in the NICU? This was a place for tiny premies...not MY baby!

    There he was. My hansome prince. There were tubes everywhere. One for breathing and many coming out of his umblical stump. His pediatritian came over to me, to fill me in on what was happening. "He's very sick." I thought he was mistaken....He must have the wrong baby! Then he said something that would change my life forever. "There's not much hope, I'm sorry." Troy fell down next to me and hugged me. We both just cried and cried.

    Then I looked up at my baby. I saw his feet moving and his little hands clenching and unclenching. All I saw in that little isolette was hope! It was pouring out of my son! I wasn't going to let some doctor tell me that there was no hope! How dare he!

    Our little guy was quite sick. It was strange though seeing this great big baby among some very tiny, fragile ones. Braden Thomas had a "neighbor", a beautiful baby girl, born at 25 weeks gestation. She was barely 2 pounds. This baby and my son had very simular breathing problems. I visited with the mother one day, we both sat and held our newborns, even SHE had hope!

    Braden spent 2, very long weeks in the NICU. He was released just before Halloween. Just before we left, his doctor came over to give him a final look over, "he's perfect", he told me. I just smiled and said a silent prayer of thanks.

    Three years later, I bumped into the mother I had met at the NICU. I didn't see a child with her, and I was afraid to ask. She recognized me too and asked how I was. Braden was pulling at me and whining about an ice cream cone. Just as I was about to answer, a tiny little girl came running up to her mommy shreaking with joy......This is "Hope", my daughter...she was absolutely beautiful!

    Sunday, September 6, 2009

    Motivational Monday

    This organization has a special place in my heart.
    The first MDA Labor Day Telethon was broadcast in 1966 by just one station in New York City. It was the first televised fund-raising event of its kind to raise more than $1 million.

    *Johnny Carson helped answer phones in 1969, the first Telethon to raise over $2 million.

    *Some of the comedians who have appeared on the Telethon are Steve Allen, Woody Allen, Louie Anderson, Jack Benny, Milton Berle, Erma Bombeck, Carol Burnett, George Burns, Red Buttons, Sid Caesar, Charlie Callas, Drew Carey, Johnny Carson, Bill Cosby, Norm Crosby, Billy Crystal, Rodney Dangerfield, Jeff Foxworthy, Gallagher, Jackie Gleason, Whoopi Goldberg, Shecky Greene, Buddy Hackett, Harvey Korman, Rich Little, Bill Maher, Howie Mandel, Dick Martin, Jackie Mason, Eddie Murphy, Bob Newhart, Rosie O'Donnell, Carl Reiner, Don Rickles, Roseanne, Rita Rudner, Soupy Sales, Jerry Seinfeld, Martin Short, Rip Taylor, Danny Thomas, Robin Williams and Henny Youngman, to name a few.

    *Jerry Lewis has been MDA’s number-one volunteer for more than 50 years. Despite battling debilitating pulmonary fibrosis, severe back pain and a heart attack in recent years, the MDA National Chairman has never missed a Telethon.

    *Jerry Lewis receives no pay for his tireless year-round work for MDA.

    Enjoy your Labor Day, by relaxing. Take in the last of the summer vacation, and spend it with those you love.

    Thursday, September 3, 2009

    Freaky Friday


    I had my second meeting with Toastmasters tonight and I had a good time. A little more relaxed than last time, but still quite nervous. (Thus the whole point of me going to Toastmasters) *smile* Just the fact I joined TM is good enough for a FREAKY FRIDAY POST! :)

    I was picked for Table Topics, and given a one word topic to talk about for 1-2 minutes. The general topic was "How would you change this...." And my word was "personal".

    I wiggled around in my chair, stood up, knew exactly what I wanted to say, started out really really good....then fell flat on my face. BAM "umm Uhh ummm" 51 seconds of jibberish came out of my mouth.

    I need A LOT of practice. But I'm there...I'm doing it. Toastmasters is something I said I'd NEVER do. But, with work, and a lot of nail biting, perhaps I will become comfortable infront of crowds.

    Have a GREAT safe and enjoy the holiday!


    Wednesday, September 2, 2009

    Thriving Thursday

    Dinner is burning, kids are screaming-the house a mess! I slide down the kitchen counter and sat on the cherrio scattered floor. I layed my head in my hands, I begin to cry. "Why me, Lord?"

    I hear a CRASH coming from the living room, followed by crying. I know it's bad, when anything is followed by crying! I look up to the ceiling, as if I was waiting for God to appear and help me through this. No such luck.

    "Moooommmy, Riker knocked over the shelf, and Brooklyn is stuck!" I close my eyes, take a long deep breath and slowly slide myself back up the counter. I pass the over-flowing boiling water on the stove and peek my head around the corner. I saw two small eyes, looking at me from under a mound of dvd's. "Mom, help, Mom help me", my 2 yr old daughter, Brooklyn says to me. Riker, stands back, trying to hide from me, as my eyes shifted to him. "She wanted to watch Spongebob, mom", he says to me. "I tried to get it for her."

    I take a deep breath and begin to rescue my child. I free Brooklyn and she’s off running down the hallway. "Spongebob Mom, I found it!" Riker pulls the dvd from the mountain, on the floor. "Yes you did, let's watch it!" The excitement that my children show, for strange things like a yellow sponge who wears pants and a tie, I will never understand.

    Children just want to be loved and paid attention to. They need acknowledgemnt and encouragement, then just watch what they give back to you. They will amaze you in the way they see such good in life.

    I remember back in May, when I took Rachel for her MRI, we strolled through the halls of the Children’s Hospital and saw many many very sick kids. They weren’t sad though, they were laughing and playing---living in the moment.

    That’s the way I am trying to live my life, and raise my family. Focusing on the NOW, helps me stay positve. It helps me get my children through a tough time. It helps ME knowing that that are happy and stable…even though they could be facing a potentially scary diagnoses.

    And as I go through my own tests, scans, pokes and imaging, I think of them. It is my children who get me through the dark and scary times. I know, that whatever it is, I may be facing, I will have them to come home to.

    I know that the stressful days, when the dinner gets burnt, the washer breaks, the toilet floods, the laundry doesn’t get done, and the hamsters escape; will try to get me to give up……I will remember to take a deep breath and know, that the stress in life is only temporary.

    I choose to never give up. I choose to set an example for my children. I choose to leave behind a legacy of strength and hope. What will you choose?

    Tuesday, September 1, 2009

    Whacky Wednesday

    Ahhh the Duggars are at it again. The family gathered around to announce to the world, that baby number 19 is due sometime after their first grandchild.

    I'm happy for them, I really am.....But one has to wonder, when enough is enough?

    With having a genetic disorder, where the odds of passing it on to your children is 50%, I wavered with my choice to have children. And to keep having them. My feelings were that NF was not going to rob me of being a mommy.

    Risks are made, with each and every pregnancy. One could be totally and completely "healthy", and give birth to a child with severe medical needs. So who decides?

    Michelle Duggar is very obviously blessed with 18 very beautiful, very healthy children, I hope and pray her 19th baby is just as healthy. But I also know, that if she were met with the challenges of having a child with special needs....the Lord would take care of her and the family.

    I would have 50 more babies, if fate so saw it that way. I don't see my NF children as "disabled"....they have special needs...and have a special mommy to take care of those special needs. I am so blessed and I am reminded of this every single day.

    Don't more babies are on their way. I get reminded all the time, that Bailey only has about 5 yrs to go, before becoming a mother, if she follows in my footsteps....~~~cringe~~~ LOL

    Bless this baby, and the siblings ---

    ***RIP POP....I know you are in a better place now! I'm so glad I got to hug you one last time. I love you so much!