RE: Natalia's philosophy and I must introduce myself.

[Guest guest]

Gayle,

My daughter just went through some of the same things this past summer. She

had to go in for a tune-up for the first time and all that goes with that.

She also has the arthritis business going on. She has finally gotten some

relief from that the past three years. We were referred to a

rhumetologist(sp?) He has another cf patient that has this same thing. He

calls it episodic arthritis. The difference is that once the episode is

over that it doesn't leave any lasting effects on the joints.

started taking Hydroxicloriquin(Plaquinel) on a regular basis as prescribed

by the doctor and it has been quite a while since she had one of these

episodes. I also think they are brought on my stressors. My dad in law has

rheumatoid arthritis and his arthritis flairs up when he is stressed or

worried. These episodes I think are more debilitating than the cf was.

I hope your son gets through this soon. My thoughts are with you all.

Tina W., mother of Steph, 18yo wcf

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 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