RE: My philosophy

December 1, 2003

Natalia,

Thank you so much for sharing that! I will keep all this in mind as my

daughter gets older.

mom of Makenzie 6 w/o cf and Jaelyn 22 months wi cf

My philosophy

Ok. So here goes the philosophy of mine. Now I am not going to say

that this is anything more than a collection of my observations.

Things that I learned by having CF, dealing with my parents, my

brother, and my friends. And of course doctors. Ahh, doctors, more

on that later.

I also realize that CF spans levels of severity and I can only speak

for myself now, that I am here at 24. Many of the things I write about

are things that I WISH I would have done when I was a kid. That I wish

my parents would have done etc. But that's wasted thought, what has

been is history, now I can only share with others. Just like I also

like to share with CFers older than I and see what they recommend for

me.

Primarily there is the topic of helping your kids deal with the fact

that they are different. Right off from the top. From early

childhood. Though it seems like the best of ideas to treat your kids

like other kids, it sets them up for failure when they eventually come

to grips that they are not the same. As kids it's easy to fool them

into thinking that they are just like everyone else. But as young

adults and adults it will cause them to feel like they cannot keep up

and that's a harsh reality. I spent my life trying to keep up with the

next kid, but especially in University, it became clear that I was

sacrificing my life, my health, to fool other people into believing

that I was like them. It's a lost cause. Plus I was lucky and was

healthy enough to fool even myself for a long time. Then this past

year it all fell apart and I felt like it was my fault. After all I

did everything right. I studied and had a lot of friends, and all

that. I got into the school I wanted, did really well in high school,

it was fool-proof. This thing could not stop me since I was doing

everything right, like other kids. But when it got me, and all of a

sudden I was so sick that I could not do normal things, I felt like

such a failure.

This is not to say that you slow your kids down. Not at all. You feed

your kids with different ideas of what they could be. Different ways

to make money as adults, different ways to date (to avoid people that

don't want to deal with CF and hurt our feelings), and different ways

of feeling successful. Different by no terms is slower. It'll allow

you to arrive at the same goals, but down a different, less bouncy road.

Your kids are different. They are part of a community of people of

chronic illness. Illness that there is no magic pill for, there is

just day after day of the same tedious physio, PEP mask, pills and

complaints. Without any seemingly positive return. It sucks, that's

the best way to put it, and as chronic kids they will feel that all

their lives. That's what we're fighting the most. That loss of hope

really early on. What's the point of doing school when I will never be

able to do what I want with my life. What's the point of working out,

and doing all these mundane things. There is a point, and it has to do

with experiencing all the great things in life.

Next eating. I hate to eat. It causes me pain in my stomach and it

causes me to have diarrhea all the time, and the only thing I love to

eat is sugar and now I'm a diabetic and I can't have that. So for CF

eating is as much of a pain as breathing. Scary that I can say that,

they are two fundamentals. So on eating, I say eat little meals

frequently. Bigger ones cause pain, at least for me. And take your

enzymes....so crucial, but I'm sure we all know that. I hate the

topic. next.

Parents and friends and the like. This is how I've felt for a long

time. With CF patients, it seems like eventually everyone goes home,

and you still have CF. Let me explain. After the initial shock of

being diagnosed, which I do not remember, since I was so young, you

just become a sickly kid. People ask you how you are feeling and it

gets tiresome to say, well I can't breathe all that well, and my nose

runs and my head hurts, and my tummy is a bit sore. So you end up

saying 'OK'. Year after year you say OK. To classmates, to teachers,

to friends, and even to family. Heck, I've said it to doctors. I'm

okay. Though you know perfectly well that if others were feeling the

way that you do all the time, well they would be home in bed grunting

about life, calling mom at work complaining of your ailments. How many

times did I sit through an Architecture exam sweaty with a fever, and

had the prof come up to me and ask me if I was okay. Then after they

would tell me things like, if it was another student they would have

called in sick for the exam and write it another day. I just said that

I did not know if I would be better tomorrow or in a week, and I did

not want to keep moving the exam up. It didn't seem smart. Plus I was

used to having fevers at school.

So after a while life and friends just move forward it seems like, and

you still have CF. The way to combat is to talk about it. Let your

kid take some of the pressure off them and tell you how it feels. How

crappy it feels to have a runny nose ALL the time. How hard it was at

recess to run with the other kids etc. Plus let the schools know, so

that kids are not drilled about what's the matter with them.

Teachers/professors/administrators, should have this conversation ONCE

with you. Fight them on it, and insist that your kids are not drilled

on the topic. How many times as a kid I was told by ADULTS that I

didn't LOOK all that sick. But I missed so much school. Horrible

stuff to go through as a kid. In university I took it upon myself to

not hide an ounce of it. I was sick, I had good solid documentation

from my CF Clinic, and I only went to the University disability office

once a year. My profs were sent out emails, I approached them at the

beginning of a school year if they were new, and I told them that this

is how it was going to be. Not the other way around. You should not

have to feel guilty about being sick. Everything was taken care of

with administration. Missed exams, tests, assignments, whatever.

There was a bigger picture than University codes here, it was my well

being. I hated being scrutinized about my being ill. .......Wow, but

you look pretty good for missing so much school...you don't look that

sick. God I hate when people say that to me, as if I made the whole

thing up.

So try your hardest to allow your kids to get as little of that as

possible. Cause that develops into a complex.

Last two. First doctors, they don't know a whole lot. And trusting

your life, or your kids life to someone that might not give you ten

minutes thought past your monthly appointment, is silly. Doctors are

good at distributing your meds, and for standard questions. The best

person to ask is your kid. When they are not eating well, and are

losing weight, its not about just eating. There are issues behind not

eating well, and they usually have to do with pain, discomfort and

phlegm. A lot of that devilish stuff in your stomach and lungs will

kill anyones appetite. So talk to your kids. This may seem obvious to

some, but my parents didn't do a lot of asking when I was a kid.

Now here comes my favorite. The killer, that if you are to listen to

any of these, this is the one to get hooked on. Physical exercise.

Obsessive, non-negotiable, exercise. Create an athlete out of your kid

from the earliest possible time. And not only will they live the

livelihood of that decision as kids and teens, when they become adults

they will thank you every day. Cardiovascular fitness for a CF patient

should be second nature. Early on, since once you reach a certain

point your lungs are so scared that it becomes difficult. So early on

develop that with your kid. And once they are at the age of 17+, start

them training. For runs, for cycling, for swimming. All the hard

stuff, the cardio stuff that most CF people hate to do. Because its so

bloody hard,. It hurts. But it gets better, and easier, and it's my

belief that it will add years of IV free years to the life of any CF

person, no matter how severe their CF is. It's all relative. Plus the

sense of achievement that your kid/young adult will feel when he/she

walks/runs a 5k with normal healthy people. it's like nothing else, as

I am about to find out, since I want to run my first race this spring.

If you are to become obsessive about anything, it should be this.

Keeping the stuff in the lungs moving is key. Plus keeping bones and

muscles healthy, as well as helping with appetite, so when a flare-up

happens and weight starts to come off there is a reserve of muscle.

It's fool-proof. And the best part, it allows us to fight. Not

through drugs and therapies that we have no control over, we just

simply do because we have to, but fight in our own way. Relentlessly.

It will give your kids a sense that they do have control of this devil

inside. And as an adult you can tell people that you run everyday, or

bike, or swim, to save your life. People respect that and it

encourages them.. And your kids will feel like heroes, cause after all

they are.

Natalia

December 1, 2003

Natalia,

Thank you so much for this. My daughter just turned 18 in November and will

be done with high school in a few weeks. She is in the process of

scheduling her college courses for next semester. She is very stressed and

concerned. If you would like, you can email her at Steph@...

.

Tina W., mother of , 18yo wcf