Bummer visits to the nurse

It is truly unfortunate for kids with CF, and for that matter, any kid who needs daily medication, that one has to make the trip to the school nurse to get their meds. Talk about adding insult to injury. It's bad enough that we have CF and have to take a million medications anyway. But having to call attention to it each and every day with a visit to the school nurse for dispensing is completely a bummer.

I was fortunate enough to be in school before the laws/policies changed and forced kids to turn all of their meds over to the school nurse. My mom packed my enzymes is little pieces of foil for me and my sister, and put them in our lunch box. I was quite the Houdini with my medicine taking. I could undo the meds, pop them in my mouth and swallow them before my friends even figured out what they HAD for lunch!

I appreciated the anonimity in my medicine taking. I did not wear my CF on my sleave and preferred to keep CF to myself. Not that people didn't know. But it helped that I could just be a kid, like every other kid in school. It is bad enough to know and hate the fact that you have to deal with the disease that sucks and people don't understand. Calling attention to it makes things worse.

Of course, the lawyer in me understands why we can't have meds just floating around schools. But somehow I don't think we'll ever have a problem with school playground value of CF enzymes!

Never again grape jelly

Do you remember the first time you had to take enzymes? I was diagnosed with CF when I was at the ripe old age of three. Old enough to remember my sweat test and have lasting memories of a sterile hospital. But what I really remember was the first time I had enzymes.

The enzyme of choice in those days (1970-71) was Viokase. A pork-based enzyme with, not surprisingly, a pork-like odor. Well, I guess I really don't know what a pork-like odor is - but I do remember the smell. And more than the smell, the god-awful taste. Viokase was meant to be swallowed, a trick I quickly mastered (and to this day, I can swallow a handful of pills without water!). But for a three year old, swallowing pills is not exactly an inherent ability. So the prevailing practice was to put to the pills in a spoonful of honey or jelly or whatever else might be easy to swallow (brings to mind the song "a spoonful of sugar helps the medicine go down, the medicine go down . . .!).

So my mom and dad put the pills in a spoonful of grape jelly. I can picture them standing across the kitchen, while I hold the spoonful of jelly meds and they encourage me to swallow them. And I can remember my hesitation. I had no idea why I was taking the stinky jelly meds. All I knew is that the eyes of the parental units were on me, and I was supposed to go "bottoms up" with the spoon.

Eventually, I took the plunge . . . and promptly chewed the spoonful of jelly and Viokase. I will never, never, never forget the nasty, disgusting taste of Viokase and grape jelly.

And I can honestly tell you, I have never eaten grape jelly again. Probably never will.

Day 1

I am 38 years old, and yes, I have cystic fibrosis. I'm one of the lucky ones . . . but there are more and more lucky ones every day. I'm often asked what my secret is . . . or what can I tell other parents of a child with CF, or what can I tell other young people living with CF.

So here it is . . . YES. IT ABSOLUTELY, POSITIVELY, SUCKS TO HAVE CYSTIC FIBROSIS.

If I could, I would love, for one day, to know what it is like to live without the disease.

BUT, since I do not know whether that day will ever come, I choose to live with, and not die from the disease (borrowing from a favorite song from the musical RENT).

You can too . . .

So, to that end, I'll rant about life with CF. Who knows . . . maybe you'll decide it's better to live with the disease, than to die from it, too. It doesn't mean we may not die from CF, but we'll at least enjoy the journey of life!

One note . . . I'm not a doctor, nor do I play one on tv. But I am a lawyer . . . I know to leave medical issues well enough alone. Go to cff.org for some quick answers to medical questions about CF. Don't go looking to this blog . . .