Skinny as a Rail

When I got into the cf clinic I was taken aback. Cf patients don't have a doctor. They have doctors. And nurses. And social workers. Aaaand nutritionists. (think country bumpkins in new york, that's the expression I wore....visualize!)

It was so  much information that sometimes still, I leave mentally numb from overload. (I have since learned to take notes)

For anyone who has never had one--or those who have--scandiishakes are a weight gain milk shake mix. I'm sure they have other uses or kinds but that is the purpose they served for me.

They are probably one of the most delicious things you'll ever taste. My first visit involved getting prescribed two of those a day and mandatory McDonald's visits. (I was ridiculously excited!) I had to quickly gain weight and nutrients or I wouldn't be alive to enjoy this newfound place and their medical assistance. (49 lbs is not sexy on anyone)

They gave me enzymes. Ultrase. To digest my food, I didn't have any of my own natural made, they couldn't get to my food. So as long as I took eight little pills when I ate I'd be okay. No pain and all the benefits of a good meal. They worked! I shot up like a weed, and grew fast. Must've been right on time.
Expensive too, today they cost about 3000 dollars a month. Yes, I felt bad for my parents too.

It was just the beginning of a long journey ahead.

An Intern with Crutches

I grew up as a crazy sickly kid. I'd run around at all hours of the night, and if I wasn't laughing it was because I had somehow managed to hurt myself on something. i.e. my crib, the couch, those infamous coffee table corners, and of course the stairs. I was sick at least eight months out of the year. So obviously for four months I had a lot of playing to catch up on.

 At the beginning my doctors and parents (adult caretaker figures)  thought I had severe asthma and just a sensitive stomach. As I got older and worse, a specialist informed us I definitely had Celiac disease. If you don't know what that is, it is a terrible evil curse I wouldn't wish on my own enemies (it seems like that when you're only ten). In all reality, it is an allergy to all things Gluten. BUT I was a kid...so I would cry in front of the refrigerator because all my favorite foods were no longer available, and I didn't like what I was supposed to be eating. I wanted to eat food that tasted good. I know that gluten free food is a lot easier to get now, and much tastier if I may say so. At the time however, it was rare, and had one aisle dedicated to it in the health food store only.

Luckily (for the foodie in me) I didn't get any better. At ten years old when I sat in front of the fridge to cry, I would wonder what my life had come to that I was never again allowed real pizza. My poor parents were scrambling around trying to figure out why I wasn't any better even though I was following the directions. I got sicker and smaller and my asthma was getting worse. Despite all of this my birthday rolled around, and eleven I became!

At eleven I weighed 49 lbs. And my 'asthma' attacks were so bad I stayed in the hospital for a little over a month. Basically my parents were doing the 'I don't want to say goodbye' dance with the doctors, and I was getting the 'stop being a liar' glares from everyone. If they can't figure out what it is then I must be faking it, oooor it's psychological.

They went all routes and still nothing. So one day--or night I should say--at something like 2 a.m. an intern on crutches comes hobbling into my room. I gave him the same polite stuff I gave everyone, and my parents (they're nice people) talked to him for a few minutes before he hobbled back out with the chart. I remember how I admired his skills in carrying things and still using the crutches.

Not twenty minutes later he hobbled back over and asked my parents if I had been tested for Cystic Fibrosis. They kind of assumed that I was since I'd had every kind of blood work and biopsy imaginable. He smiled and shook his head, explaining a sweat test to them.

We'd never run through that one, so they agree to try it. Why not right?

It was glaringly clear, after the sweat test, that I had CF. They were not surprised my first day at clinic to hear my medical history; they were more surprised I'd lived that long. (I'm stubborn)This prompted my parents to give me the 'quality over quantity' speech. Way over my head at the time but that's okay. All I knew was that it didn't hurt when I ate (pizza included) and I could breathe again! I knew that if I ever saw that intern again I'd kiss his face! Because they'd fixed me. (Child logic! I still use it whenever possible)

Sharing Cystic Fibrosis with the World

I started this blog because of a bunch of kids. I was standing up in front of them a few months ago, talking about my job. A job which I no longer have, but that's another story for another time. At some point during the talk, I must have dropped the CF bomb. Telling people you have Cystic Fibrosis goes one of two ways; either the person you're talking to has no idea what it is, or they know someone who has/had it.

The funny thing about this situation however, was that they started asking questions that no one has ever asked me before. Of course I always get, "What's that?"
But this time I got other questions coming at me rapid fire. "How does that affect your job?" "Does it hurt a lot?" "Is it like...cancer?" "Is there a cure?" "Do you hang out with other people who have it?"

I was really surprised, to say the least. Most people ask me one or two questions and then politely avoid the subject. This time though, I had a lot of fun with the no holds barred questions. I ended up answering more about that than my actual job.

It hit me then, that I don't mind talking about it. Actually, I'd like to share my experiences, and see who else has been through it. I'd like to share what it was like growing up with CF and how it is from here on out, with so many changes on the horizon. I want to invite people who don't know what Cystic Fibrosis is into my world and let them experience it through my words. I want anyone who wants to, to ask me any question they have because I want everyone to know what CF is. So this is my Blog, and for the next however long it takes, I'll be sharing my CF stories.