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!

XXXX

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.

--
Kristi

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.

NEVER NEVER NEVER NEVER NEVER GIVE UP!

Winston Churchill

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 say...how'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......

TURN AROUND

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 made....it 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!

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,

Kristi