Friday, October 30, 2009

Freaky Friday

I thought it would be fun today to get a little silly with all the
medical stuff that I have gone through.

The "ABC's Of Kristi's Medical journey through life"

A- Appendix (removed in 2001)
B- Birth
C- C-section (2007)
D- Depression
E- Ear problems
F- Foot screw placed after break 2008
G- Gall Bladder removed 2000
H- Hydrocephalus
I- Indigestion
J- Junk Food (haha)
K-Kidney Stones
L- Lipoma (brain tumor)
M- Miscarriage
N- Neurofibromatosis
O- Overweight
P- Peripheral Blindness
Q- questions unanswered
R- Ribs cracked 2005
S- Stomach
T- Tensor Tympani
U- Ulser
V- Vaginal Births (Natural)
W- Weight
X- X-rays
Y- yeast infections
Z- Zinc deficiency

Have a HAPPY and SAFE Halloween!

Wednesday, October 28, 2009

Hurdles of Life

Thriving Thursday

Did you ever have to run track in your physical education class? Back in '87, at Redwood Middle School in Thousand Oaks, California, we were privileged enough to enjoy "Track Week". I was short, awkward, and pushing past my ideal weight. Running around a track at high speed didn't exactly play to my strengths. The worst part of the program were the hurdles. I was scared to death of tripping over them, or worse, just running into them, unable to jump high enough to even trip on them!

Early in the week, small mattresses were put out as landing pads, and that made life a lot easier. But I dreaded Friday, when we'd be split into teams and pitted against each other in Olympic style competition. The day of the big race, I could feel my stomach doing flip-flops, as my body looked for an excuse to give my brain to escape this gauntlet of physical exertion. But it wasn't enough, and I found myself dressed out in my t-shirt and my too short, red nylon gym shorts, standing next to the Track.

Mr. Washburn divided us up, and the games began. When it came time for the hurdles, I found my way to the back of the line, delaying my torture for as long as possible. Finally, I reached the starting point, and took off. I managed to leap over the first few without incident, and began to gain confidence. At the fourth hurdle...WHAM! My foot caught, and down I went. My knees and hands were scraped and green with grass stains, and I hesitated to go forward, until I noticed the rest of the kids coming together on the sideline - BOTH teams - and they started to shout encouragement: "You can do it Kristi! Keep going!" I felt like I was in a movie, and wondered if I would suddenly hear "Chariots of Fire" echoing over the playground loudspeaker. I kept going, and finished the last few hurdles. In last place, of course, but I finished - and that was a victory in itself.

Today, after weeks of jumping hurdles, it feels like I've tripped over one, or several. Doctors that don't listen. Results that don't give clear answers. Treatment plans that won't give me immediate relief. And after every hurdle, there's another one just waiting for me. But I still hear the encouragement - from my family, my friends, and now, finally, from myself. Get up. Jump the hurdles. Finish the race.

If you find yourself on the ground, discouraged, scared of not getting up, I'm rooting for you. Its not always about finishing first - but don't let yourself just stop. Jump the next hurdle - your finish line will come. And your trophy will be knowing you are strong enough to get up and finish the race.

Whacky Wednesday

So, I went to the ENT yesterday and got a series of tests done. Amazingly, I did MUCH better on the hearing test this time. My hearing fell "within normal", and I was really happy about that! There is a slight loss in the left ear, but still within the normal range.

After the hearing test, I met with Dr. Mitchell. He swung open the door, smiled and stuck out his hand to shake mine. The charm was oozing off him and I was immediately weirded out by him.

First of all, he he asked me, "So, what's going on with your skin?" I told him to look in his notes, and he would clearly see, that I have Neurofibromatosis. (Grrr....I don't know about how YOU would feel...but that just rubbed me wrong. I wanted to chime back..."hmm, what's up with the extra white teeth and fake tan?" .. but I was good)

I explained my symptoms to him and tried my best to be REALLY clear in what I am experiencing. For those that don't know, here is what is going on: For quite a few years, I have had this REALLY annoying symptom, when I hear loud noises. It's even triggered by my own voice. It has gotten progressively worse in the last year or so. What I get is crackling/popping, almost like a "blown speaker" noise. The feeling has my plugging my ears whenever the noise get to a certain level ( a level that would be normal for everyone else )

Dr. Mitchell didn't really seemed concerned at all. He examined my ears, nose and throat, and offered his expert advise to "wear earplugs". I sat there, and probably looked like a deer caught in the head lights.

A few moments went by, and I saw him scratching notes in my chart. "NO!"....."That's not good enough!" I told him. "You try living life, and avoiding noise. I am a mother....I will not walk away today with you telling me to avoid noise and wear ear plugs!"

I mentioned to him something I found on google....(and there's one thing I have learned, never ever mention to your doctor that you googled your symptoms, because it never ends well, but I was desperate!)

Tensor Tympani Syndrome is what I mentioned to him, and he just looked back at me and shook his head. "That's kinda rare, and I've not seen it here at this office." (FIGHT KRISTI FIGHT) So I asked him, "How many NF patients do you have?" "A couple", he answered. "Hmm that's kinda rare too, and here I am sitting here with NF."

He just looked at me. I see he is not used to his patients fighting so hard. I was NOT going to leave without SOMETHING. I have been pushed around by so many doctors, who felt THEY had my best interest in mind. BULL! I'm done with that!

"Well, I'm the "throat" guy, I will "toss this around", with my Ear guys and see what they have to say". THROAT GUY??? "Well get me the EAR guy! I have issues with my EARS, I'll wait here as long as it takes". That didn't work. Dr. Mitchell promised me that he would talk to the other doctors about what's going on with me and give me a call.

I left pissed. I didn't get my answers. Just more questions. But I bet Dr. Mitchell won't forget me. I left an imprint on his day....and I truly hope he consults with the other doctors, or I may just have to make another appnt and grace him with my presence.

Winston Churchill

Tuesday, October 27, 2009

Turn it around Tuesday (Update)

This week is FULL of appointments. Sometimes, I just want to stay in bed and not deal with ANY of it. But I know this medical stuff is necessary, to get my family back on the road to being healthy.

Yesterday I saw the eye doctor for a full visual field. If you are keeping track, this would be number 4. "No Doc, it's not a computer glitch, my left is steadily going blind!"

My peripheral vision in my left eye is bad. So bad in fact, that I didn't click the clicker at all, during most of the test. The tech kept telling me, "Now you know you are supposed to be clicking whenever you see that tiny blinking light, right?" "Uh ya Lady, I got this test down, maybe you can hire me to run your machine." ( I said it jokingly, not with the sarcasm that you have probably picked up on in this blog post)

The test took about a half an hour. After I was done, I watched as the tech charted my results. I asked her, "So, what's it's my eye?" I could actually see very clearly, the results on the paper, were not good. The tech told me, that she doesn't interpret the results and I'd have to wait for the doctor.

I left and was almost half way home, when I got a call from the eye clinic, asking me which eye they had tested, and that the machine said they tested the right eye. "No, it's the left"....They asked me to come back, to repeat the test because there was no way to alter the print out once the test is complete......


I went back to repeat the series of blinking light / clicking test and left.

I was annoyed, but people are human....The tech actually wrote herself up for the mistake. Mistakes are would have been nice if the test was done right the first time, but it's great it was done right the last time.

I soaked in as much of the alone time I was getting. I went to COSTCO and picked up a few things and dreamed a little. (That place is GREAT for dreaming)

As much as I hate what is happening to me, medically....I am happy that I have and I am getting what I need. I am not suffering....I love my life. Neurofibromatosis, has only made me stronger in who I am, and what I stand for.

Today is my ear appnt. I am hoping to find out what's going on there.

Hope all is well!

Sunday, October 25, 2009

What is a Hero?

Motivational Monday

What makes someone a hero? Must they hold some super power or unmeasurable strength? Do they need a cape and be able to fly?

My life is filled with plenty of real life heroes, from my kids teachers to the doctors who've helped me gain a better understanding of what I have and how to treat it (even those I've had to push a little bit :) ) to the soldiers protecting our freedom (two of my brothers fall into this category) to firefighters, policemen, and all those who have chosen to live a lifestyle geared towards protecting their fellow humans here on planet earth.

My favorite hero, however, is one who has no idea of the impact they make on someone's life. They show strength in the midst of an unknown and scary situation. They show compassion for the weak, and despite adversity, continue to move forward. They have a listening ear and empathetic voice.

Since my diagnosis with Neurofibromatosis, I have met so many families who are also struggling with this disorder. You've found me on this blog, on Twitter, on Facebook, a few of you I've even had the chance to meet in real life! You've given me reason to hope for better treatments, stronger futures for my children, and, sometimes, a reason to write when I just don't feel like writing (that's a good thing).

Your voices, expressing your pain, your struggles, your joys, your victories - they all resound in my ears throughout the day, pushing through the pressures of my headaches, the din of noise my kids often generously provide, and the occasional blanket of anger and depression I pull over my head on the bad days.

Readers, friends, family - YOU are my favorite heroes. And I'll take you over The Incredible Hulk, Superman, and even He-Man, stud that he was, anyday.

With respect, appreciation, and love,


Friday, October 23, 2009

Lori Hoogewind

My "Freaky Friday" Hero!

Meet Lori Hoogewind, she is a woman suffering from Neurofibromatosis. Lori developed one of the largest NF related tumors ever recorded. Beginning small, then turning cancerous, Lori underwent radiotherapy, which had a devastating side affect.
The treatment cause the tumor to grow....and grow fast. Within months the tumor had grown so large, and leached itself onto different blood supplies, that the doctors were fearful to remove it, for fear it would kill Lori.
Lori didn't give up, however. She was determined to find a doctor that would help her! She wasn't going to lay back and let the NF rob her from her greatest gift, of being a mother...a wife.
"I missed the little things in life that I had once taken for granted," Lori says today. "But most of all, I missed being a mom. Toward the end, Nina couldn't even sit on my lap, because I would sit down and my lap would be gone."
After many doctors refused to treat Lori, she got in touch with Dr. McKinnon. His team put together a plan of action for Lori's surgery. The removal of the tumor took hours, and required many many units of blood. The tumor that was removed weighed 176 pounds! Amazing since Lori, only weighed about 120 pounds!
Lori recovered and is living at home with her husband and daughter!

14st tumour
Lori fought until she was heard, and I'm so happy that she did. Giving up was not an option for her. She wanted to live! She is my NF Hero.

Thursday, October 22, 2009

Overcoming the Odds

Thriving Thursday
Do not fear the winds of adversity. Remember: A kite rises against the wind rather than with it. ~unknown

It's really awesome, when you meet someone who shows courage and strength, despite dealing with a devastating disorder like Neurofibromatosis.

Typically causing learning difficulties, NF definitely adds challenges, to anyone diagnosed. Statistics state, that 25-40% of people with Neurofibromatosis have learning disabilities. This may include neuromotor dysfunction and attention deficit hyperactivity disorder, as well as deficits in visuospatial processing. In English, having NF makes learning harder then for the average person.

While some may accept the fact that their fate is sealed. There are those that fight against the odds. Meet my friend Christina. I met her on Face Book and found her to be an inspiration! Her positive outlook, and fighting spirit have touched my heart.

"Having a learning disability was never easy for me, especially being the only one in family who has one. It makes it very difficult to gain support from a family who never believed that I could make it through school, let alone college. I still do struggle with disability at times academically when it comes to read comprehension, but what me push through my disability is working really hard in my classes even when it became difficult at times.

I am a very high goal setter. When I put my mind to something I do not stop until I get there. And from the young age of 16, I have already accomplished so much. The goals in my life that I have accomplished so far despite my disability are:
1. Graduating from high school
2. Getting into my community college and graduating from there with my associates
3. Finishing out my degree at my 4 year school, in which I graduated from there with Latin Honors, Cum Laude!!!!!!
Graduating from college with Latin Honors was the proudest moment I have ever felt because I had worked so hard my last two years of college to get to that point.

Now that I am in graduate school studying Special Ed, my new goal is to try to come out with as close to a 4.0 as possible. It may be a lot of hard work but I know I can do it." ~Christina Carlucci

Yes---! You can do it, Christina! You have found the secret that so many people have been searching for! Some will go their entire lives, never finding it. You have drive and spirit and can do anything you want to do.

NF doesn't stop you, or limit you.....Go for it and reach those stars!

Statistics may say that NFers aren't as smart as the "average person", but I disagree. People like Christina, prove to me everyday, that odds and statistics are just numbers on paper. We are flesh and blood, and no charts, graphs, or clinical garbage will define us.

Everyone....has dreams, hopes and desires....Everyone has to fight for them, but it takes someone really special to never let the dreams die.

Thank you Christina, for sharing your story!

Monday, October 19, 2009

Turn it around Tuesday---THRIVE!

I have bad days. Do you? Sometimes I have REALLY bad days. I look in the mirror and see what's going on with my body, and I get so angry. IT'S NOT FAIR! I cry as I see the tumors multiply....what will I look like in a year? In 5 years? In 20?

Neurofibromatosis is a progressive disorder. It's cruel and steady and has no sympathy on who it touches. I hate it so much some days, that I find myself reaching for the razor blade, as I did years ago, when the first tumors began to show themselves.

I was in my 20's when a tumor grew fast and large on my neck. Desperate, I sliced through the tumor to remove it from my flesh. I didn't care about the physical pain it caused me, for its mental pain was far worse. Little did I know back then, that this was only one of thousands that would try to ravage my body.

It's hard for me to look in the mirror, without noticing the tumors. I deal with the ones on the surface, and others that are deeply intertwined, attached to nerves, under my skin. NF, for me has been a hard pill to swallow. It affects everything I do now. I can't cover it up and hide anymore.

How can I possibly live a normal life? How can I be with a man, an expect him to not be repulsed by the sight of me? Can I walk around, without stares and finger pointing? How can I teach my children a positve self image, when I feel so terrible about my own?

I don't have the answers to all of these questions. I wish I did. But I do know this, you pick yourself up, dust yourself off, and CHOOSE, to live. You CHOOSE to thrive. There are times when I don't give a damn about what people say, or think about who I am....and I need to start living that everyday.

This is what God handed me....what will I choose to do with it?

Sunday, October 18, 2009

Defining Wealth

How much money would it take, for you to call yourself "rich"? Websters dictionary defines wealth as, "Having an abundance of material possessions or an abundant amount of valuable resources". When I looked up "abundance", It defines it as "A plentiful supply".

This, to me can mean so many things. It takes so much more, then having a steady flow of cash to make one "rich".

Having tons of money is a desire of so many people. But here's the thing...ANYONE can become "rich"'s what you do BEFORE, DURING and AFTER the money that makes one truly "wealthy". When one is wealthy, it means their riches have meaning. If you make it all about the money, it doesn't really mean much.

When I got to thinking about an "abundance of...", all I could think of was my family. My children make me feel like the richest woman in the world. Their love for me, reaches to infinity, as does my love for them. My "plentiful supply" is that of love. And I feel true wealth, starts right there.
The money will come, or it won't, but riches begin with positive thoughts. With positive thoughts comes positive actions. The money will not just fall from the sky and land in your lap. You have put your thoughts into action and go after it. Offer something of worth to the world. If all you are thinking is how you will never achieve riches, that's exactly what will happen.

Money has been a sore subject in my life. There was never enough, and I have always had to scrape by. I remember when I was 8 yrs old, going grocery shopping and hiding in the aisle as my mom paid for our food with food stamps. I'm not sure who I was hiding from, but I remember how I felt. Not having enough, doesn't feel good, it leave us stressed and worried, which can bring on a whole new set of problems. Money should not be something that enslaves you...It's nice to have, but should never define who you are.

Did you know that the bible has more verses that talk about money, than it does about salvation? God wants us to be wealthy, He wants us to be happy. But measuring your wealth, by the things you own, however not only deceives can deceive yourself.

Here is a story I found, that touches the true meaning of wealth and riches. I hope you enjoy.

One day, the father of a very wealthy family took his son on a trip to the country with the express purpose of showing him how poor people live. They spent a couple of days and nights on the farm of what would be considered a very poor family. On their return from their trip, the father asked his son, 'How was the trip?'

JC Thompson and Sandy, photo by David St Lawrence

'It was great, Dad.'

'Did you see how poor people live?' the father asked.

'Oh yeah,' said the son.

'So, tell me, what did you learn from the trip?' asked the father .

The son answered:

'I saw that we have one dog and they had four. We have a pool that reaches to the middle of our garden and they have a creek that has no end. We have imported lanterns in our garden and they have the stars at night. Our patio reaches to the front yard and they have the whole horizon. We have a small piece of land to live on and they have fields that go beyond our sight. We have servants who serve us, but they serve others. We buy our food, but they grow theirs. We have walls around our property to protect us, they have friends to protect them.'

The boy's father was speechless.

Then his son added, 'Thanks Dad for showing me how poor we are.'

via Scott Williams

Friday, October 16, 2009

Freaky Friday Facts

I really love doing Friday posts. Not only do they give me a break from writing about NF or health care, but I really learn something! Check out these totally useless facts, that are really kind of interesting!

Update on the Swine Flu......Baby seems to be getting better. Still has a very very junky cough. She has no fever.....we are keeping an eye on her breathing. I'm hoping this is the end of the flu for us! Thanks to all the well wishes and prayers!!

Honey is the only food that does not spoil. Honey found in the tombs of Egyptian pharaohs has been tasted by archaeologists and found edible.

Months that begin on a Sunday will always have a "Friday the 13th."

Coca-Cola would be green if colouring weren’t added to it.

On average a hedgehog's heart beats 300 times a minute.

More people are killed each year from bees than from snakes.

The average lead pencil will draw a line 35 miles long or write approximately 50,000 English words.

More people are allergic to cow's milk than any other food.

Camels have three eyelids to protect themselves from blowing sand.

The placement of a donkey's eyes in its' heads enables it to see all four feet at all times!

The six official languages of the United Nations are: English, French, Arabic, Chinese, Russian and Spanish.

Earth is the only planet not named after a god.

It's against the law to burp, or sneeze in a church in Nebraska, USA.

You're born with 300 bones, but by the time you become an adult, you only have 206.

Some worms will eat themselves if they can't find any food!

Dolphins sleep with one eye open!

It is impossible to sneeze with your eyes open

The worlds oldest piece of chewing gum is 9000 years old!

The longest recorded flight of a chicken is 13 seconds

Queen Elizabeth I regarded herself as a paragon of cleanliness. She declared that she bathed once every three months, whether she needed it or not

Slugs have 4 noses.

Owls are the only birds who can see the colour blue.

A man named Charles Osborne had the hiccups for 69 years!

A giraffe can clean its ears with its 21-inch tongue!

The average person laughs 10 times a day!

An ostrich's eye is bigger than its brain

The word "queue" is the only word in the English language that is still pronounced the same way when the last four letters are removed.

Beetles taste like apples, wasps like pine nuts, and worms like fried bacon.

Of all the words in the English language, the word 'set' has the most definitions!

What is called a "French kiss" in the English speaking world is known as an "English kiss" in France.

"Almost" is the longest word in the English language with all the letters in alphabetical order.

"Rhythm" is the longest English word without a vowel.

In 1386, a pig in France was executed by public hanging for the murder of a child

A cockroach can live several weeks with its head cut off!

Human thigh bones are stronger than concrete.

You can't kill yourself by holding your breath

There is a city called Rome on every continent.

It's against the law to have a pet dog in Iceland!

Your heart beats over 100,000 times a day!

Horatio Nelson, one of England's most illustrious admirals was throughout his life, never able to find a cure for his sea-sickness.

The skeleton of Jeremy Bentham is present at all important meetings of the University of London

Right handed people live, on average, nine years longer than left-handed people

Your ribs move about 5 million times a year, everytime you breathe!

The elephant is the only mammal that can't jump!

One quarter of the bones in your body, are in your feet!

Like fingerprints, everyone's tongue print is different!

The first known transfusion of blood was performed as early as 1667, when Jean-Baptiste, transfused two pints of blood from a sheep to a young man

Fingernails grow nearly 4 times faster than toenails!

Most dust particles in your house are made from dead skin!

The present population of 5 billion plus people of the world is predicted to become 15 billion by 2080.

Women blink nearly twice as much as men.

Adolf Hitler was a vegetarian, and had only ONE testicle.

Have a GREAT weekend!!

Wednesday, October 14, 2009

Attitude is everything

Thriving Thursday

Our home has been invaded this last week, with the Swine Flu. It has brought everyone in the house down for days! With fevers, coughs, runny noses and diarrhea, it has run me so exhausted, and I am beginning to feel very run down.

My powerful "Mommy never gets sick" coat was hung up today. My head hurts (more than usual) and the hacking, persistent cough chisels though me, like a jack hammer.

I don't need medicine....what I would like is something to knock me unconscious until this passes.
At our house, we have a "Family Meeting"....we read from the bible, and talk about our day. We had a catch up night and I found it so awesome when we asked the kids about how they felt about the last few days.

The kids prayed for each other and asked God to help them feel better. They listed off how excited they were about going back to school, Rachel told us all about her trip to the Fire Station, and jumped up to show us all the "stop-drop-roll" drill, she learned. She dramatized checking the door for heat, and wanted to plan out a proper fire drill for the family! She ran to get the plastic fire hat and placed it on my head. I instantly began to feel better, as the kids laughed at their "FireMom".

Kids have this amazing resiliency, and I learn so much from them. They have this way of having such a positive attitude, despite challenging circumstances. My children have taught me a new optimism even while dealing with so much adversity.

Even with a fever of 102....My 2yr old sits on the bed and sings the theme song to her favorite show. I sit and watch her in total amazement. She smiles at me, through rosy red cheeks, and a snotty nose, and tells me she loves me.

I'm so proud of my kids, they bless my life so much.


There once was a woman who woke up one morning, looked in the mirror,
and noticed she had only three hairs on her head.
'Well,' she said, 'I think I'll braid my hair today.'
So she did and she had a wonderful day.
The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.
'H-M-M,' she said, 'I think I'll part my hair down the middle today.' So she did and she had a grand day.
The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.
'Well,' she said, 'today I'm going to wear my hair in a pony tail.' So she did, and she had a fun, fun day.
The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.
'YAY!' she exclaimed. 'I don't have to fix my hair today!'
Attitude is everything.

Live simply, Love generously, Care deeply & Speak kindly

Important Women's Health Issue

Wacky Wednesday!
(Thanks Laura!)

Important Women's Health Issue:
nDo you have feelings of inadequacy?
n Do you suffer from shyness?
n Do you sometimes wish you were more assertive?
If you answered yes to any of these questions, ask your doctor or pharmacist about Margaritas.
Margaritas are the safe, natural way to feel better and more confident about yourself and your actions. Margaritas can help ease you out of your shyness and let you tell the world that you're ready and willing to do just about anything. You will notice the benefits of Margaritas almost immediately and with a regimen of regular doses you can overcome any obstacles that prevent you from living the life you want to live. Shyness and awkwardness will be a thing of the past and you will discover many talents you never knew you had. Stop hiding and start living, with Margaritas.
Margaritas may not be right for everyone Women who are pregnant or nursing should not use Margaritas.. However, women who wouldn't mind nursing or becoming pregnant are encouraged to try it.
Side effects may include:
  • Dizziness
  • Nausea
  • Vomiting
  • Incarceration
  • Erotic lustfulness
  • Loss of motor control
  • Loss of clothing
  • Loss of money
  • Loss of virginity
  • Table dancing
  • Headache
  • Dehydration
  • Dry mouth
  • And a desire to sing Karaoke
  • The consumption of Margaritas may make you think you are whispering when you are not.
  • The consumption of Margaritas may cause you to tell your friends over and over again that you love them.
  • The consumption of Margaritas may cause you to think you can sing..
  • The consumption of Margaritas may make you think you can logically converse with members of the opposite sex without spitting.
Please share this with other women who may need Margaritas.

Monday, October 12, 2009

Fighting for what you want

Turn it around Tuesday!

What do you do when you are told "NO"? Do you accept that as the final answer, or do you fight?

When someone you love is sick, you go to the doctors, to get better. You trust that they will have your best interest at heart. But what if you ran into a doctor who basically said, they didn't know how to treat you? They knew you were sick, and understood the pain, but could offer you no solutions.

Years of pain, and hundreds of trips to the doctor, and I get sent away with some kind of "cover up" medication. It does treat the symptoms, but doesn't fix the problem.

I am so tired of being mishandled and pushed onto someone else's plate. Enough is enough. I will fight until someone - somewhere takes me seriously. This is not some game we are playing, where the life, if lost doesn't matter. I am a mother, a wife, a sister, a daughter and a friend. My life so many people, and will fight with my very last breath, if that's what it takes.

Remember being a kid? Being told NO, didn't really mean much. Like my husband said in one of his speeches, being told NO, just meant to ask AGAIN. And AGAIN.

So, I'm turning this around. "NO"...will not be my final answer. I will not be told I can not be helped, or that "There is nothing we can do." I am worth a doctor digging his heels in and finding the answer.

Saturday, October 10, 2009

Swine Flu

Motivational Monday

Our family has been out of commission this last week, due to the Swine Flu. This nasty bug, came home with a couple of the kids last Tuesday and Wednesday, and has left us all exhausted!

Five of the kids are going through the Swine Flu right now. The worst part of this whole thing is keeping up with keeping everything clean. I am trying to sanitize everything, every few hours, as to try to prevent this from going round and round. So my handy dandy Lysol wipes are my best friend!

Symptoms of H1N1 flu infection in humans are similar to classic flu-like symptoms, which might include:

  • Fever above 100.4 °F
  • Cough
  • Sore throat
  • Headache
  • Chills
  • Muscle aches
  • Diarrhea
  • Vomiting

Our family had/has all the above symptoms. It was hard for us to determine, if we were just dealing with a cold....or maybe it was just the common flu. It's hard to know, which you are dealing with, and you won't know, unless you get tested. Pay attention to your symptoms and see a doctor, if any of these symptoms last longer then a couple days. The Swine Flu CAN be different for listen to your body, manage your fever and stay hydrated! The first couple days, started out with a runny nose, low fever, and sore throat.....

But as the H1N1 progressed, the fever set in and really made the kids feel bad. I kept them home from school and the nurse noted their symptoms. It was the end of the 2nd day, that was the worst. The fevers stayed at about 101.....the coughing and snotty nose all were manageable. I kept very aware of the vomiting and diarrhea, as to prevent dehydration.

Days 3 and 4 were basically spent in bed. Cool wash clothes, 7-up (and Mommy's special secret tootsie rolls pops) made everyone feel good. There was no vomiting no diarrhea. Motrin and tylenol seemed to do the trick.

So far, just the kids have been affected by the Swine Flu....and I have been vigilante about sanitizing and cleaning up after them. It has been exhausting, but very worth it.

With all the media hub-bub about the Swine Flu....I was scared to death about having it hit out home. Everyone was made to think this was horrible...and I know, it is for SOME....but compared to the regular seasonal flu, this has been a walk in the park.

I spent a lot of time searching the net for articles and stories on families dealing with the Swine Flu...I came up short. I found articles explaining the symptoms and what to watch for, but no real life stories.

So here you go, our real life story about dealing with the Swine Flu. As we go about our day...I think back to the episode of the Brady Bunch when all the kids came down with the measles. All I need is bongo drums, a kazoo, a horn, a bell, a whistle, and a New Yrs noise maker.....and I'd be set.

As of right now, we have coughs, fevers and runny noses to deal with. Unless the kids show signs of dehydration, we will continue to let this run its course here at home.

Take care of yourself!

Friday, October 9, 2009

Freaky Friday

You know what's FREAKY?
Fever, diarrhea, coughs, snot
THREE of them are sick enough for the doctors.

So forgive me for this being so short.

Have a GREAT weekend

Wednesday, October 7, 2009

Beating Depression

There are millions of people dealing with depression. It has become a fact of life that so many have had to deal with for a good part of their lives.

When chronic illness comes into play, depression can really be hard to shake and in fact, it can become worse. Did you know that depression is one of the most common complications of those who suffer from chronic illnesses?

It's important to recognize the symptoms and be properly treated. Living and coping with a chronic illness is extremely challenging all by itself. Periods of sadness and grief are to be expected, but if they persist, you need to seek help.

*loss of appetite * fatigue *restlessness
*mood swings *loss of interest *withdrawal *unexplained pains

Some tips to help you cope with chronic illness and avoid depression:
  • Try not to isolate yourself. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. Ask your physician or therapist for referrals to a support group and other community resources.
  • Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available, and maintaining a sense of autonomy and control.
  • Make sure that you have medical support from experts you trust, and can talk to openly about your ongoing questions and concerns.
  • If you suspect that your medication is causing you to be depressed, consult your doctor about alternative treatments.
  • If you are in chronic pain, talk with your physician about alternative pain management.
  • As much as is possible, remain engaged in the activities you enjoy. Doing so will keep you connected, as well as boosting your self-confidence and sense of community.
  • If you become depressed, don’t wait too long before seeking help. Find a therapist or counselor whom you trust.
Everyone will deal with some form of depression in their life, the key is to acknowledge it, before it consumes you. If you are already consumed, by depression, please seek help. There are ways to help you cope and manage this. Try not to focus on the illness you have, but the person you are. A diagnoses, does not have to label you. It does limit you. It does not mean you can't beat the odds!

Growing up, I saw first hand, what depression can do to someone. A once vibrant mother, transforming into a bitter and angry beast. My mother had fallen into the trap and was consumed by a monster, called depression. To this day, she lives in that pit. It has become her normal. Many have tried to reach out to her, but unless she extends a hand back, I don't know what to do for her.

Seeing my mother, I was determined to break the cycle. I fight a constant battle, between the need to fight, and the desire to fall and give up. But I refuse to let my chronic "illness" be my life. I focus on WHO I am, not WHAT I am.

I know it's hard. I know having a chronic illness sucks.....but what are you going to about it? The only thing we have the power to change, is how we deal with it. And you know what? I'm not about to roll over and die. No way! I am in the ring, with my gloves on and will fight till that last bell rings.

For those that want to talk, I'm here. I'm a friend and will listen.
I'm reaching out. Please reach back.

Waiting Room

With all these Doctor visits, we have spent TONS of time in the waiting room. Here are some tips to make the time you spend go a little smoother.

First....Plan on waiting. If you don't have to, then GREAT....but plan ahead! I have learned the hard way.

It really stinks when you are in a waiting room with kids, and they have NOTHING for kids to do, so the first thing to do, is to bring something for them to have fun with. (Coloring books, reading books, anything that can hold their attention)

If the place has internet access, bring your computer. If I go to a appointment alone, I bring my computer....This is where I catch up on emails and do some writing.

Today, I had a dental appnt. The waiting room was packed with people, so I knew I was in for a wait. Lots of interesting people in there! One women, who was in a wheel chair, with obvious tourette syndrome, rolled around to each person waiting, pointing "You're're're're not" I hold my breath as she gets to me, and sigh relief as she says "you're not"...... A hour and a half later, I finally get called for my appnt. You never know when you will have to wait, so be prepared!

Avoid frustration, and plan plenty of time, for the appointment. This will save your nerves and make for a more pleasurable time at the doctor.

This is why I always try to schedule my appnts for the first appnt of the day.....That way I won't have to deal with the doctor running behind. never fails, I always end up waiting.

One of the BEST waiting rooms I have ever been in had a children's play area, stocked with toys, large cushioned chairs and plenty of reading material! I tell ya...I got all caught up on my 'Jon and Kate' gossip there!

The worst waiting room was just the other day at the Neurosurgeon. A drab plain room, line with wooden chairs. Magazines that were outdated and very obviously read through a zillion times. The kids were flopping all over the floor and crawling under the was definitely NOT a fun experience. And unfortunately, we ended up waiting in that room for over an hour!

Waiting is NEVER fun. But plan ahead. Pack a bag of will make the time you spend in the waiting room more manageable.

Monday, October 5, 2009

Bright Eyes!

One of my favorite songs of all time! Every time I post a Turn it Around Tuesday. this song goes through my head.
Since I'm feeling a bit under the weather, I thought it would be nice for me to take a break, and for you to enjoy a song!
Happy Tuesday

Sunday, October 4, 2009

Neurofibromatosis Diagnoses

Motivational Monday

I have met a lot of parents lately, who have recently received the diagnoses of Neurofibromatosis for their child.

It's amazing, when you reach out to someone who has a need, how the word gets around, and you have a full group of people, who are desperate to understand their new diagnoses.

I know how confused I felt when my own children were diagnosed. I wanted to know WHY, even though, for me, my "why" was really already known. I was desperate and frantic for answers...only to come up short, and left feeling more alone than ever.

It's one thing to have the disorder myself...I could be strong and courageous, but now this is passed to my children, how will THEY cope?

The first step in "coping" with any kind of diagnoses, is to first understand it. By understanding the illness, you bring the control back to you. The control, can be used as power, as you educated yourself and those around you.

Living with any chronic illness takes courage. But when you learn to face your fears, you will one day move past them, so you can live a happy and full filling life.

Neurofibromatosis, is not the end. I have found that life is what you make of it, and is full of choices. If you choose the "doom and gloom" path, that's YOUR choice, and you will have to deal with what comes from that.....But for me, I choose to show my children what true strength is, and help them THRIVE with NF. By being taught and shown this.....that's how THEY will cope.
Children learn from everything we as parents do and say. And showing them, that I will NOT, just turn over and let this disease consume me, teaches them the courage, they will need to get through anything.

Friday, October 2, 2009

Freak Friday

Yup, pretty much sums up everything I'm feeling
Happy Friday Everyone