Nose News

For about a week now I've been able to SMELL! I thought it would pass but obviously it hasn't, and hopefully wont. I'm not like a super smeller now or anything, most of the time I have no idea what I'm smelling but it feels so great!

I've also been able to sleep with my mouth closed these last few weeks. That's great but I still want these polyps out. People always comment on how I sound like I have a cold :(

Cancelled :(

My Polyp surgery got cancelled! I'm on the waiting list but have no idea when it will happen. This is very disappointing but I'll get over it (once I have the surgery). Haha.

The whole Lyme Disease/antibiotics seems to be going ok. The only thing that has changed for the worse is how well my digestive system works. Things are a lot better when I have lot of probiotics.

I found out today that I'm 112 lbs. this is the heaviest I've ever been! The doctors are going to be really happy.

Ticks and Tae Kwon Do test results!

Last Thursday I found a tick attached to me. Yesterday evening I found a quarter size rash where the tick had been. Today I got put on 3 weeks of antibiotics for Lyme Disease!!!!!!!!!!!

Funny thing is that I NEVER go outside during tick season, I guess that doesn't matter when your brother and sisters do and DON'T do tick checks before hanging out in the house and in my bedroom!

Last night at the "Friends of Cambodia" fundraiser we raised $700! Over $180 of that went to the Cambodian Orphanage. This was with 50 people attending. It was an awesome evening, more people should have been there to enjoy it! Aline and I also got the shock of our lives when our Tae Kwon Do teacher was talking and said "...Something the girls don't even know is that they are RED BELTS..."!!!!!!!

Not only did we pass our Red Stripe test but we advanced to our Red Belts! OMW!!!!!!!! So yeah, good and bad things happening this week!

Tae Kwon Do competition

10 Competitors, 16 Medals and one AWESOME day!

Aline & Wolfgang were coaches and I was equipment & competitor manager.

Surgery

After seeing a specialist yesterday, I have a date for my next Polyp surgery (this will be my 7th surgery) it's August 9th. I'm so excited! Finally a clear nose... and maybe a sense of smell?

Details of my first adult CF appoinment

First thing on my list is to go see the Physio Therapist. I arrive 20 min. early because I gave myself extra time just in case I couldn't find it. We talk about how CF has affected my lungs and he's very impressed with my physical fitness level.

Then I head to eat lunch. My Physio app. was at 11 am. and my next one is at 1:15 pm. so I have sometime to eat lunch. I didn't have any cash so my debit was the only thing I could use, and the Tim Hortons booth thingy only took cash, so I ended up eating a piece of each Pepperoni and Hawaiian Pizza.

Then I headed to the clinic and right away was sent for PFT's which went really well. Then to get an X-Ray which looked awesome! and then I saw the nurse, nutritionalist and then finally the doctor. Everything was awesome!

My next app. is set for 6 months from now. sweet eh?

Officially a CF adult!

Wow! I can't believe I was so nervous about the whole transition thing. It went really smooth and I'm really going to enjoy working with the new doctor and head nurse.

My CF Creon Award party went great and the food was awesome, for the first time I tasted breaded shrimp, I could have said it was like chicken.

Here's a tip for CFer's who are graduating to the Adult Clinic:
Know your facts about fertility and Cystic Fibrosis. If there was a point system I think I would have scored a 10!

Update on running

I started this last Monday and I ran 3 out of 5 mornings. The 2 I didn't run I slept-in instead. Oops, bad me!

I can already tell that it's helping improve my lungs! Very exciting!!! I breath so big when I'm running... I can't wait till I can get to the point where I'm running a couple laps around this block.

HERE IS A BIG SECRET:

I'm working on a website about what EXACTLY I do for my CF, I mean, I totally go into big time details, no generic "I take supplements" stuff or "I use cream for my polyps", questions are going to be answered and it'll all be legal, I just used English to suit my purpose! Hehe!

Sadly, I'm not giving out the URL (web address) yet, it's not quite finished. Just wanted to let ya'll know that I'm working on that.

For updates on my book you'll have to go to http://mycfbook.blogspot.com.

Thanks!

Running

Out here in Texas I don't have Tae Kwon Do :( I miss you guys!!!!!!!!!!!!!!!!!!!!!

Anyway, so I'm going to start RUNNING! At 6 AM wake up and go for a run, hoping to start with 1/2 to 3/4 of a mile. It'll be great for my lungs and endurance training.

I need ya'll to keep me responsible with this so pop in now and then to ask me how the running's going, OK?

Thanks!

I'm in Texas

Hey! I made it to Texas! I wrote all about it on my other blog www.hopeishere.blogspot.com if you want to take a look.

Thankfully at the moment I have internet on my laptop. Hopefully it continues.

God bless

CF Clinic July 18/06

My lung function was around 90%! Yea! I don't have a cough and it's non productive if I do cough.
They still want me to take Tobi for preventive measures but I'm like "I don't agree with the philosophy of poisoning myself better, thank-you very much".
Hello? Does this sound crazy to anyone else? And if I'm not sick anyway, how much more damage will drugs do? I don't even want to think of that.
Did I mention that I'm writing a book about my life with CF? The first draft is completed.
I updated my CF website www.freewebs.com/cflife. Enjoy!

Update

Well my health is doing great even though the doctors want me to go on Tobi and I said “NO!” hello? If I’m healthy why would I want to bring down my immune system with drugs? I’ve never felt this good before, my next CF clinic is in April, I can’t wait to see how good my lung function is then.

I updated my CF website! www.freewebs.com/cflife take a look and enjoy!
TTFN (Ta Ta For Now)

Awesome Christmas and CF song!

Christmas was awesome! I got a Tamagotchi and toe socks!

My health was great, this is now the third Christmas in a row without pneumonia, all thanks to glycos!

I’m part of this yahoo group called “teens with CF” it’s great. One our members (Cindy) wrote a song called “My Classroom” here are the lyrics: (it’s an awesome song!)

My Classroom

(by Cynthia Ray)

Days go by,
I don't know if you see
The way that I'm struggling just to breathe
Simple things that may seem easy
To me, these are triumphs to achieve

Chorus:

But there are so many lessons I've learned
I don't know how I'd know,
And there are miracles I wouldn't recognize
any other way
Any other way


Twilight falls
Dreams get farther away
Mem'ries of summer turn to grey
Darkness steals my strength and
Passion for life starts to fade

(Chorus)

Can you tell what I'm going through?
Do your eyes see what mine do?
There may be pain, but there's glory too
Do your eyes see what mine do
What mine do

(Chorus)

P.S.

I almost forgot to mention this! Dad never picked up the drugs. So, my 98% normal lungs thing? It was done by my body, NOT the rat poison. You can have CF, be healthy and not have to be on drugs.

- Advocate for a drug free life

Great news from my CF appointment!

I got like the greatest news yesterday… ok, let me tell the background story first.

Last Thursday I got a CT scan of my lungs to make sure that everything was ok. Yesterday at CF clinic the doctors took a look at the CT scan results and told me… get ready for this, it’s amazing – I have 98% normal lungs! YEA!!!!!! I’m so excited about that! Just thought I’d share the good news.

If you are out to describe the truth, leave elegance to the tailor.
Albert Einstein

Survivor's guilt

I have this theory about CF and survivors guilt.

I know I have it; but I’m not sure about other CF people.

I’ll explain it for those who are confused.

Survivor’s guilt is known for people who’ve been through dramatic experiences that others have died but by chance (actually God) they have lived.

I think people with CF have survivor’s guilt of some sort. I know CF is a difficult disease to explain because it affects people in different ways. I believe there’s like what, 1000 mutations of the disease? Obviously some will have worse symptoms then others. And therefore die earlier.

I knew a CF girl who was 2 years younger then me; she died at the beginning of this year. A couple months before that a guy my age died from CF, he lived about ½ hour away from my place. That’s when I felt guilty for being alive, I asked God “why wasn’t that me?” it so easily could have been.

I know there is stuff out there that helps CF but people just don’t know about it or are so ignorant that they refuse to give it a chance.

My parents always told me that God let me have CF for a reason. I know that reason now – to share with others who have CF that there is hope. But how do I effectively get that message across? I’m not doing so well because of luck or because I have one of the lesser kinds of CF. I’m this well because I’m doing something about my health! You can have as good as quality of life as me if you WANT it!

PARENTS take responsibility for pity sake! The doctors are not responsible for your child’s health, YOU ARE! Your doctor’s are there for guidance, but they are NOT all knowing. They DON’T have all the answers. YOU have to find them. First place I’d go look is for others who’ve had success with their CF. such as I. I’m not the only one.

Do this for your kid, or yourself.

RE
www.freewebs.com/cflife - my life with CF. What I’ve done to be proactive about my health.

I liked this quote so much I also put it on my regular blog – Life is a Vapor

The first step to getting the things you want out of life is this: Decide what you want.
Ben Stein

HeHe

Dad has still forgotten to pick up my drugs. How funny!

Water

Water. Without it we would die. But is all water equal? That answer is quite obvious; NOT all water is equal.

and the best water out there is….. WELLNESS WATER! www.wellnessfilter.com

Tomorrow I’m hopefully picking up the Wellness Water Carafe!!! I can’t wait! It was a gift from a friend. Thank-you!

Drinking good water is KEY in having a good quality of life!

The Appointment

So, supposedly there is a new way of measuring how well you're doing weight wise with CF! Calculating the BMI (in percentile if under 20). I'm told if you're in the 50 percentile (if under 20) then you have a better chance of making it with CF. Well, in order to be in that percentile I have to weigh 114.2 lbs!!!!!! I'm 105.4 now and this is like the heaviest I've ever been! How am I supposed to weigh 114? Like where is that fat/muscle supposed to go? I already got a butt! I certainly do not need anything any bigger.

They want to put me on Ciprofloxacin and a puffer just because my lung function wasn't as good as it was last year this time. I'M FINE! I'm giving my body what it needs and it'll do what it needs to do and take care of itself without having to deal with POISON which is exactly what drugs ALL are. (well basically)

I have this opportunity to be part of a research thingy... I'm going to tell them exactly what I think about Canadian health care! (or sickness care)

As I see it, every day you do one of two things: build health or produce disease in yourself.
Adelle Davis

Appointment tomorrow

Tomorrow is my CF check-up. I think I’m doing great but I guess I’ll find out if I really am or not tomorrow!

Winter is sooooooo cold! I really do not like it! If I ever get sick it’s during this season or because of it. I only like snow when its Christmas time.

Dad ordered a product from MT and I can’t wait for it to come!! It’s supposed to come today. I really think it makes a difference with my polyps and hopefully they’ll go ALL away this time so I won’t have to have my 7th surgery on my nose! My last one was like almost 3 years ago (next month will be exactly 3 years) and I really don’t want another one.

I’ll tell ya what happened at CF clinic tomorrow (as if I could sooner. lol)

"Condemnation without Investigation is the Height of Arrogance!"