Natalia's philosphy and I must introduce myself.

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Message: 17

Date: Tue, 2 Dec 2003 08:28:07 -0600

Subject: RE: Re: NATALIA

Natalia,

Thank you so much for your philosophy. I forwarded to my daughter Steph and

she printed it off to read. Also, thank you for sending her an email. I

think you might be hearing from her. She was so surprised when she read

your philosophy and realized that someone else felt the same as she did.

Thank you so much. I hope you will be feeling better soon.

Tina W., mother of Steph, 18yo wcf

But I am Gayle, mom to a 21 year old son with cf. I have been reading this list

discussion for about a month now, having subscribed to it in the past, but

cannot recall how long ago. I am glad to be part of this group and feel

priveledged to have rediscovered you. I guess it was because I was on a special

notice mailing. I needed to reconnect.

We have three children and another almost-daughter who also lives with us, as

she boards with us to study in our town. We live in central Pennsylvania. Other

children are a 22 year old son, Josh, and an 11 year old daughter, ,

both carriers. Our special situation is that we are also a military family, and

use a military hospital in Bethesda, MD, and have been doing so for the past 15

years, living in or near the DC area. As son's health has been relatively good

up to this point, it has been easy to access it, even with the 2 hour distance

we have now. My husband had been retired from active duty after 33 years, but

was recalled back to active duty about 14 months ago. He is an officer in the

Army, and works in DC. So, all my " men " are away from us these days! But DD and

I hold down the fort. I homeschool her, which is great.

our cf son, is a junior in college, in a pre-med program. I read, with

great interest, Natalia's thoughts and observations and it came to me during a

particularly trying period in our family's life. Christian has alarmingly lost

his

high quality of life this past school year, and recently made the decision to

leave school for a semester and try to build himself up a bit. He is exhausted

and losing his " balance, " so to speak, in many areas. Happily, he is able to

talk to us about his fears and has managed to come to decisions to restructure

his life accordingly. I was tremendously uplifted by Natalia, as she shared many

of the same thoughts that I was hearing from our son, as well as helped me to

see more clearly the things that are beginning to creep into Chris' life to

stress and worry him. I also have sent a copy of what you wrote, Natalia, to

him. We discussed your letters and I believe that they have helped him in that

he hears his feelings echoed by another who shares this disease.

I have always been able to be blunt with about the things he needs to do

and know. His dad has never been able to deal in the same way with our son. My

husband is too sensitive and hates to add to Chris' pain by being the hard guy!

Poor mom has to do the dirty work! But that's how he is, and his IS learning how

to do better, as he understands that we are a team.

Unfortunately, until this past month, has felt invincible, and has

plummeted from his ivory tower into the realm that most of you cf friends find

yourselves. He diagnosed himself with depression in Oct., and sought help for

that. So, he is trying to do all the positive things, we are certain. It will

take time for him to come to terms with the seriousness of his new position. He

is running the gamut of feelings right now. He was ill enough with lung

infection that he had to come home early for his break, but he's back at college

trying to complete his term, and this will be a hard two + weeks, as he is not

near optimum strength. I think that one antibiotic is draining the life out of

him. But he is trying to eat more protein and rebuild. And study, and b\do his

job as a Resident Director of his dorm. He sleeps a lot.

As his mom, I knew that this time would come, but after all these years, I was

beginning to believe that it was way in the future. So, I am dealing with these

new circumstances. The docs want him to come in for a two week tune-up and this

will be his first. Bascially, he had little lung involvement all these past

years. He does however, have great digestive problems and clubbing, and has had

many polypectomies....I think it was 14. (Regrowth has slowed down greatly.) He

has had, more recently, arthrtis and erythema nodosum, which has given him

sooooo much pain and sometimes sneds him to bed for weeks, the swellling in his

legs, ankles, arms, and joints is awful, and the nodules that form are utterly

painful. (Does anyone else get this??? We are clueless why he does. Stress, we

have determioned, brings it out.) So, he now is looking forward to the tune-up

and actually, it was a younger patient who spoke to him that encouraged him to

think in this direction. So, he and his MD have decided to wait until Jan. for

admission, but I know he could use it now. HOWever, college is much too

important to him. Man, life does get in the way!

I was especially interested in the comments Natalia made in the area of

exercise. and I discussed that very issue before he left and had already

had him decided to do better with that. Your wisdom in this area was very

encouraging, and I thank you. It doesn't help that his older brother is in a

military academy and is very physically fit and s\doesn't understand that Chris

can't do much right now. CHris himself told me that he could do better and has

made plans to join the Y, even getting the forms while he was home.

So, to all of you, I say hello, and thanks for the sharing that goes on here. I

enjoy n Rojas so much also, just wanted to express that here. And there are

so many others who I am becoming acquainted with as well, by reading your posts.

I do want to add that I might not be able to post much through these next few

weeks, as I am in a show, as well as my daughter and husband in another, with

her ballet company. The next month will be a bit of a blur, I'm afraid! I know

that once he goes on the IV I'll have some questions. When he was 12 months, I

did home parenteral nutritution for him, so we're hoping that he may come home

with the IV after the first few days. He had discussed this prospect with his MD

after I shared what I have heard from this list...so he is able to be more

positive. I asked him if he'd like to join the list, but it's always no, no, no.

He has never, ever had a connection with any other cf person, and has no desire

to. What does that say....I could guess that he is trying to not accept it in

his own life. But I did send him Natalia's letters, and at least they have given

him some things to think about, and most especially to understand that there are

others who truly do understand what he is dealing wiith even if his parents who

do try, cannot possibly ever really know. He could use a friend who has this cf,

but he doesn't know it yet. I know that he won't write to you or anyone himself.

A funny thing happened to him at school a few weeks ago. We were made aware of

the fact that there was another cf patient there who would be entering as a

freshman, just so the clinic would know to take safety precautions with them if

ever they were there at the same time. Well, although her mom and I talked, the

kids had no interest in each other. One day, as he was leaving the cafeteria, he

saw that some capsules of med fell out of a pocket of a girl in front of him as

she was pulling something else out, and that they were Ultrase, the meds he

uses....he knew who she was. I asked him why didn't he say, " hey you dropped your

Ultrase! " He said that he just didn't think of it at the time, but that would

have been a funny way to have met her!

Oh well, this is me, and us, I guess.

Thanks for having me, and I'll be reading...

Gayle