Sunday, December 09, 2012

CF Challenge

Q. Your definition of CF
A. A genetic disease that mainly affects the lungs & digestive system.

Q. When were you diagnosed (how old)?
A. 3 weeks old, I had pneumonia and wasn't gaining weight.

Q. Earliest memory of CF?
A. Drinking pediasure bottles (yuck!) & painful tummy aches

Q. Any siblings with CF?
A. 2 younger sisters

Q. Close to anyone with CF?
A. Duh my sisters! Lol and lots of friends on fb.

Q. Favorite thing to do during treatments?
A. Read

Q. Worst part of having CF?
A. Short life expectancy. Pain.

Q. Any perks of having CF?
A. The CF community, easy access to drugs & docs (lol) & appreciation for life.

Q. When do you usually tell new people you have CF? How?
A. :( it's a slow process... I tell different parts along with getting to know them better... The topic usually comes up when I take my gazillion pills when I eat. The how is different with everyone.

Q. Do you have a favorite quote/song pertaining to CF/living with CF?
A. Fix you - Coldplay
Creep - Radiohead
I hope you dance - Martina McBride
Breathe - Anna Nalick

Tuesday, November 20, 2012

Fertility & Surgery

So the last few months have been crazy with so many doctor appointments.

A little while after my last post I got a call for an appointment with the local fertility clinic. Since then we went through all the tests to see if anything is wrong. Well as it turns out nothing is! We have what they call unexplained infertility. At the moment we are trying a fertility drug... I'm praying for a Christmas miracle.

Around the same time as all of that I had my 8th polyp surgery. Now I'm doing nasal rinses and trying to keep them from coming back anytime soon.

I updated my website which now includes a short version of Abe's & my love story.

This last CF clinic (early November) I was able to get a prescription for vitamin D 10,000 IU! My weight was still a great 117 lbs. lung function in the 80's. got blood taken for testing vitamin levels (no results yet).

Friday, July 20, 2012

Depressed. What!? Me??????

At our Friends Sean & Felicia's wedding :)
I don't understand. Maybe because I've spent months, no years denying my reality or the reality of CF. not anytime lately... It's all I can think about. To escape I watch one of my favorite 60 tv shows I keep up with or dance around cleaning my house listening & sobbing to "fix you", "part of me", "creep"... I'm afraid to put these feelings down, but I finally am.

I know I'm different then the typical CFer, I know my crazy treatments have made me an anomaly but deep down I still know CF will kill me (unless some random act of God happens before).

I hope to see my grandchildren, I honestly think that's real for me, for my sisters. But I see my mom & mother-in-law & I put myself in their place & I can't imagine leaving (or being taken away). They are needed here.

I'm getting old, I'm 24 and my friends are dropping like flies & each death seems to take a part of me with them. If I don't have a child in the next few years will I even see them grow up? Get married? Have kids? Those thoughts are what hit me every month when that metaphorical test comes back negative.

I'm positive, all the time - to everyone but myself. In fact I don't want people who love me to see this post. This is not the "me" that they know. But it's the me that I see in the mirror, in pictures... In this blog.

I needed to write this. I don't know why. This is one post I'm not sharing on facebook.

I have one dream I need to come true, half of it has already, the husband part. I want a child so badly it hurts. I want that family portrait. My other secondary dreams are for my hopeful future generations - I hope they travel the world, have a career that gives them great purpose & fulfillment, alongside a family who loves them for who they are. Family is #1... And I'm so lucky to have mine!

I've heard before that gratefulness & depression can not exist together. << so not true.

***I'm not saying I'm clinically depressed either***.

I can only do the best things for my health EVERYDAY. That's my plan, that's my only option, to make my life revolve around my CF. I guess I'm not dealing with that reality so good... It's never affected me so much as it does now and I know this is only the beginning. My problem? 80% of my family, friends & contacts don't get that.

No, I don't have a job STOP BOTHERING ME ABOUT THAT, CF is my job and I don't get a vacation. EVER.

No, I'm not lucky that I can't work & help provide for our dreams & future.

Yes, I'm busy all week at home, I'm trying to do treatments every day & not disrupt too much of my "normal" life.

Yes, I'm proud of this extra 10 lbs I've mysteriously found this past year, it means I can get Pregnant without worrying about my weight, I'm FINALLY 5 lbs heavier then my ideal weight. Im a 120!!!!!!!!

So to sum up...
I'm loving my life.
I'm scared it's gonna end way sooner then I'm ready for (not to say death scares me) I just wanna live before it happens.
I wish people could physically see how CF affects me EVERYDAY.
CF truly is an invisible disease.
I do my best to raise awareness without being gloom & doom (which in reality is CF).

To parents of CFers...
Fight for your own CF champions.
Give them the best nutrition you can. We are all miracles.
You amaze me!

Fellow CFers...
You guys are my people.
You understand.
You fight.
CF sucks.

My family & friends...
I'll do my best.
That's the only promise I can make.

Love you all.

God bless.