Re: You know something?

August 7, 2008

Lou

Guess I'm strange but I look forward more than behind. Now part of it is

a lot of past I don't want to remember, from bad times to mistakes I

made. I can't do anything about the past to change it now. But, as short

or difficult as my future might be, I can do something about it. In

fact, that reminds me, someone is suppose to be calling me about some

plans to do something this weekend. Why isn't my phone ringing? lol. I

know there are tough times ahead for me but I can at least plan to make

the most of those. I just try not to dwell too forward in the future so

that i can take advantage of the present. Part of the future scares me

but a good part still interests me. I had a stark reminder yesterday but

I think my response was more shocking to my rheumatologist than his was

to me. He thinks I should do Imuran and Prednisone because there is no

other choice. He said if I didn't I'd die. I said to him there were

worse things and that I was going to die anyway. It was a matter of what

I did between now and then.

>

> I gave you all the websites for fun and remembrance of some of the fun

> times we had as kids growing up and to refresh our memories of some of

> the sometimes sad, but beautiful times of being a child and a teenager

> in those eras.

>

> It seems we don't have a WHOLE lot to look forward to, and this is

such

> as cool way to remember the way it was.

>

> Love,

> Lou

>

August 7, 2008

Beth

My situation isn't that dire. I'm deteriorating very slowly. Actually

rheumatologist did many tests and I have a couple more planned but

unable to verify the existence of an autoimmune disease. So, even though

Chicago thinks I have either undifferentiated connective tissue disease

(like you) or polymyositis, he sees why they would say that but the

tests aren't convincing enough to him to confirm that. So, his words are

what to do remains with me and my pulmonologist. He sees nothing to make

him say there is a rheumatological condition nor to prescribe Imuran and

Prednisone even from that perspective.

I was with my pulmonologist only two days earlier and although in some

ways my condition is worsening my PFT's were not down. Now, understand

that doesn't mean they are good, just not worsening. My FVC has been

between 36% and 39% on my last three PFT's and my FEV is 44%. We are

tossing out one set of PFT's, in his office in February, because I just

did poorly that day in failing to ask for different mouthpiece. I still

can't get a TLC or DLCO in his office, can't hold breath long enough. My

last TLC was 48% and DLCO has been between 38 and 42% and he suspects it

may be down slightly. But we basically left it that unless

rheumatologist was able to find something significant and present

overwhelming case for treatment then I was just going to continue as is,

on nothing.

I have considered Imuran only but all of them feel like thats a terribly

long shot and more risk than reward, too. Now, got into a very

interesting discussion of when prednisone seems to work and doesn't.

This went beyond just the form of PF. I have UIP which, we know, its far

less likely to work for. If I had significant Autoimmune then working on

that might retard progression of UIP. And, he did want my pulmonologist

to double check any possibility of Sarcoid. However, the new discussion

was regarding what is seen in the lungs. As he put it, whatever

honeycombing is there will stay there regardless and is too late for

treatment. Now fortunately my CT's don't show heavy honeycombing but the

biopsy does show lots of very very tiny honeycombing. So, thats good.

However, often the forerunner to more honeycombing is Alveolitis. I do

not show significant Alveolitis although we're going to double check the

three biopsies and many CT's. His experience is that prednisone has been

more effective in dealing with the inflammation of Alveolitis and

preventing it from turning to honeycombing.

So, I keep learning more and getting more ideas and didn't really get

into long discussion of pulmonary decision with rheumatologist. He

wasn't saying that as a rheumatologist but just an individual who feels

he would do anything that had a chance of delaying death. Now, while I'm

not anxious to die tomorrow, I don't want to buy additional years at the

expense of poorer quality of life with the ones I have. So, I'll keep

talking to my pulmonologist and others and seeing Nephrologist,

Neurologist and Gastroenterologist over next few days to keep tabs on

things plus see if another EMG makes sense. The other thing I'm doing is

going to have another CK done when I haven't exercised for at least five

days. Rheumatologist indicated my treadmill use could very well elevate

it. We'll continue to repeat blood work.

So, I think rheumatologist was just personally feeling what he knows

about UIP and the fact that statistically I should have just a little

more than two years at tops left. However, we don't have expiration

stamps and I know the realities. I also value quality of life and right

now mine is still good if it would cool down a bit here.

So, at this point just still watching things but not overreacting to

anything. Still my biggest drop in PFT's was from pre-VATS to post-VATS.

There is nothing to give me any sense of panic. And, yes, I have a

uniquely strong reluctance for prednisone but I've listened and, to

date, there has really been no argument in my situation that would lead

one to use it, even without my past experiences. If there was a

confirmed or defined autoimmune or the rheumatologist felt something he

should prescribe it for, or I had NSIP, or heavy Alveolitis, or other

indicators then it might be different.

So, I'll continue to live in the present and enjoy it as much as I can

and, if something arises that says I need to reconsider anything I will.

> >

> > I gave you all the websites for fun and remembrance of some of the

fun

> > times we had as kids growing up and to refresh our memories of some

of

> > the sometimes sad, but beautiful times of being a child and a

teenager

> > in those eras.

> >

> > It seems we don't have a WHOLE lot to look forward to, and this is

> such

> > as cool way to remember the way it was.

> >

> > Love,

> > Lou

> >

>

August 8, 2008

I'm with Bruce. I have things I look forward to. I'm going on holiday tomorrow! And I make other things worth looking forward to. I know what I've really got to look forward to, but every thing alive has the same, doesn't mean it has to be the only thing in my future.

But it is nice to look back.

Love Ze xx>> I gave you all the websites for fun and remembrance of some of the fun > times we had as kids growing up and to refresh our memories of some of > the sometimes sad, but beautiful times of being a child and a teenager > in those eras. > > It seems we don't have a WHOLE lot to look forward to, and this is such > as cool way to remember the way it was.> > Love, > Lou>

August 8, 2008

Walt

Me, too. I traveled more this spring for pleasure than I've traveled my

entire adult life. I get out and do something every day, except icy

roads or horrible all day storms. I get with friends regularly. I don't

postpone the things I really want to do. I also do only those things I

want to and don't expend my energy in ways that aren't healthy for me.

I intend to do it all the way. When I'm near the end, on morphine, and

only alert a couple of hours a day, I'm going to use those two hours to

talk to and hug those I care about and probably to tell them what to

type here for me.

I just look at the friends I've made here that I wouldn't have had

otherwise.

None of this says this is the life I would have chosen at this point.

But, had I remained healthy much of the living I've done not only

wouldn't have happened yet, it probably never would have occured.

> >

> > I gave you all the websites for fun and remembrance of some of the

fun

> > times we had as kids growing up and to refresh our memories of some

of

> > the sometimes sad, but beautiful times of being a child and a

teenager

> > in those eras.

> >

> > It seems we don't have a WHOLE lot to look forward to, and this is

such

> > as cool way to remember the way it was.

> >

> > Love,

> > Lou

> >

>

August 8, 2008

I don't think the way you 3 do. I just wanted to make a few people

in here happy about their life, good or bad. I have, apparently,

upset you 3 and I will not apologize. By making people smile once in

a while is good, if you can't smile, then forget it.

Lou

> > >

> > > I gave you all the websites for fun and remembrance of some of

the

> fun

> > > times we had as kids growing up and to refresh our memories of

some

> of

> > > the sometimes sad, but beautiful times of being a child and a

> teenager

> > > in those eras.

> > >

> > > It seems we don't have a WHOLE lot to look forward to, and this

is

> such

> > > as cool way to remember the way it was.

> > >

> > > Love,

> > > Lou

> > >

> >

>

August 8, 2008

Lou

You haven't upset anyone. We have however stated that we do look to the

future just as you said you do in response. No one was upset and no one

wanted an apology because no one felt you did anything wrong. We just

made comments on thinking of our future more positively.

> > > >

> > > > I gave you all the websites for fun and remembrance of some of

> the

> > fun

> > > > times we had as kids growing up and to refresh our memories of

> some

> > of

> > > > the sometimes sad, but beautiful times of being a child and a

> > teenager

> > > > in those eras.

> > > >

> > > > It seems we don't have a WHOLE lot to look forward to, and this

> is

> > such

> > > > as cool way to remember the way it was.

> > > >

> > > > Love,

> > > > Lou

> > > >

> > >

> >

>

August 8, 2008

You mean all the hundreds of email ecards and pictures I have sent

here on the board and to members of this board on their emails

wishing them well is not " more positive " . What is more positive I

would like to know than what I have been doing for the people who

have this PF. I have it too, you know. You won't find a more

positive person than I myself, let me say that!!!!!!!!!!!!!!!!!!

Any number of people on here will personally call you and tell you

that.

> > > > >

> > > > > I gave you all the websites for fun and remembrance of some

of

> > the

> > > fun

> > > > > times we had as kids growing up and to refresh our memories

of

> > some

> > > of

> > > > > the sometimes sad, but beautiful times of being a child and

a

> > > teenager

> > > > > in those eras.

> > > > >

> > > > > It seems we don't have a WHOLE lot to look forward to, and

this

> > is

> > > such

> > > > > as cool way to remember the way it was.

> > > > >

> > > > > Love,

> > > > > Lou

> > > > >

> > > >

> > >

> >

>

August 8, 2008

Lou,

No one is criticising you! Everyone loves the positive uplifting things you post. The comments made were made in an effort to say that even though we're sick, we still have things to look forward to. I just posted something like that myself.

I think it got started because in your original post you said, "It seems we don't have a WHOLE lot to look forward to, and this is such as cool way to remember the way it was." That's how the conversation started but it's just a conversation, no one was arguing and certainly no one was criticising you.

Please continue to post the things you do. We all look forward to them and they make us smile!!