Small blessings

My oldest son has what I believe is his first crush. She's a darling girl, with wonderful parents, who lives in our neighborhood and who goes to our club. She's one of a group of kids that he met when we first moved. So fortunate do I feel that he quickly met and was welcomed by such a great group. The kids hang out at the pool, play tennis, etc.

His crush has some swallowing issues - and while they don't preclude her from swimming, playing sports, etc. - she periodically has a feeding tube through her nose. Crush's mom told me about it and said her daughter was really amazed that my son had never asked about it - as if he didn't notice it. It made her feel good. I asked him and he said he really didn't pay attention to it.

I would like to think that one of the small blessings of my life with CF is raising children who understand and appreciate that everyone has something they have to deal with and it doesn't make them any less of a person.

J sees me do various treatments, take a host of medications, and often go to the doctor. His exposure and experience seems to be translating into seeing a person for who they are without judgement. Medical things do not really phase him.

Sometimes the CF experience isn't so bad.

TMI

Sometimes it's just easier to say I have really bad lungs and allergies and leave it at that . . .

One of the hardest things about moving to a new city is starting all over explaining CF. Sooner or later that cold that never seems to go away needs an explanation. (I don't have a constant cough, but I do cough - especially when I'm nervous or somewhere it is dusty and moldy). How much to say, how much to explain, when someone's "friend" enough to be privileged enough to hear "my story." I don't want to burden anyone I've just met with too much information.

Happy Birthday to ME!

A right of passage (or perhaps an accomplishment) for someone with CF . . . I turned 4o years old on the 13th!!!!

Most people cringe at the thought of turning forty. And while I must admit, I have noticed more and more that I am starting to look "older," I am excited to have reached this milestone. In many ways 40 is still so young . . . and yet, for those of us with CF, I am more than middle aged.

Now the quest is on to reach 50 . . . then 60 . . . then 70~

Happy Birthday to me

I'm really okay!

Haven't written on any of my blogs for a long time - not that I haven't been thinking of "wonderful" things to write about. Just been a little crazy - my husband was transferred to the Windy City, so have spent the last several months trying (and still trying) to sell a house, get ready to move and move. Not to mention, work was really busy and I was crazy enough to work right up until the day we moved (kind of the "you can't tell me no" syndrome kicking in - work needed me, and I figured it was good to keep more than busy, though it probably about did me in with stress!)

But bottom line - no health problems whatsoever. Just life getting in the way of my extra-curriculars.

In the meantime, I chaired, for the second time, the KC Wine Opener for CF - beat our fundraising goal! And had a wonderful time. Went to Chicago's Wine Opener this week - nice to meet some people in the CF community here.

Now the quest begins for a CF doctor. I've had one recommended to me . . .but there are a lot of CF doctors in Chi-town, which is really nice. I may be shopping around a bit. The older I get, the more picky I seem to get about my doctors - I want this to be a partnership, not a "let me tell you what to do." I've been around long enough to know my own chemistry and what works . . . and need someone that appreciates that! I think that's probably an issue with CF adults across the board. We know enough medicine to be dangerous and don't take everything a doctor says at face value!

More later . . .

My Story

Everyone with CF has a different story - and was diagnosed a different way. Since I'm often asked, here's mine . . .

I was diagnosed with CF when I was 3 years old. I ate like a horse, but weighed only 20 lbs - the doctor just kept reminding my parents they weren't big people, and their daughter was likely just petite. No meconium problems, no respiratory problems. Finally, a different doctor was a bit suspicious and sent me for a sweat test. Honestly, I remember it. It's one of my first recollections. I think we remember big things like that.

Long story short, the sweat test came back positive. Since I was positive, my sister was also tested (she was six months old and very healthy) and she also was diagnosed with CF. A few years later, my cousin Jason was also diagnosed with CF. The gene runs rampant in my family!

I've never really struggled with my weight - once I was on enzymes I gained weight and grew. Even today, I'm able to keep my weight on - though I do eat more than most people and can out-eat my husband any day. I even gained 35 pounds with each of my pregnancies!

(Yes, I have three boys - all healthy, none with CF, but all, obviously, carriers. The ethics of that are for a different day. Let's just say I don't take no for an answer.)

But back to my CF - my CF manifests itself more in sinus problems for me. Oh I do Pulmazyme, but not TOBI (allergic to it in the inhaled version). I have the vest, but prefer to do the a capella breathing. I take oral antibiotics several times a year, but to date, knock wood, have never had IV antibiotics or been hospitalized for a tune up!!! And I take the typical handful of other medications every day. I'm very blessed, and very rare - and yes, I have been retested, and had genetic workups done to see if I really do have CF - I'm homozygous for the delta F mutation and my sweat test still comes back positive. But I don't take this stroke of luck for granted - I work out, try to get rest, take my medicines and really, really work hard at the postitive attitude.

My sister and cousin weren't so fortunate. My cousin died when he was 14, my sister when she was 23 - two years after receiving a bilateral lung transplant. I know the good and the bad that is CF - but I like to try to keep my mind focused on the good. Everyone's story, everyone's version of the disease is unique. So I focus on my own story . . .

Because I Will NEVER GIVE UP

Why do I run around, working as a lawyer part-time, volunteering for the CFF, doing stuff at church and the boys' school?

Because I want to do it while I can. Because I want to prove everyone wrong. Because I want to show you that people with CF CAN do just about everything like everyone else. Because you can't tell me no. Because I refuse to let my CF get in the way of my life. Because life is too short to wait until tomorrow.

Because I will never, ever, ever GIVE UP.

Ignoring CF

I am blessed to be healthy enough with my CF to have given birth to three wonderful sons. They know about my CF (well, the oldest two anyway - my two year old prefers to pull apart my nubulizer while I'm doing my medicines). They know we're involved with the CFF and they know mom has a bad set of lungs. They know their Aunt Janet died from CF before they were born - but they also know that right now mom is healthy, doesn't need a lung transplant like Janet did and that they shouldn 't worry.

But much like I tried to avoid the topic of my CF when I was a kid, they seem to be doing the same thing. My oldest had a Boy Scout merit badge project where he had to do a report on a charitible organization. Research it and give an oral presentation. Why don't you do the Cystic Fibrosis Foundation, I asked. "That will be easy - we know a lot about it."

He rolled his eyes. "No, I don't want to do that." And proceeded to do his project on the soup kitchen our church supports.

Okay, a good cause, but I was a little hurt . . . for awhile. Until I realized like mother, like son. I prefer not to focus on my CF - and I've passed this attitude on to my boys. Thinking about it too much can be too painful.

Or maybe he's just being a typical 12 year old who doesn't want to do anything his mom suggests!!!!

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 . . .