I guess it's about time I posted what BUD had to say. Not much, really. I have a diagnosis of idiopathic pulmonary fibrosis, although all that really means is that there is scarring in my lungs and they don't know what caused it. On the bright side, the scarring is in fact very minimal and most of my lungs are simply full of inflammation. If they could figure out what causes the inflammation then I could potentially be cured. That's a big if.

For the first time (other than when I was in the hospital), hubby is putting the baby to bed and I have a little time to myself. What a luxury this is! Usually I head upstairs with babe around 8:00 and by the time he's asleep I'm ready to conk out myself. So this is a nice treat. Hubby didn't work today because of the rain; he's not usually here until after 9 or so this time of year.

We went on quite the shopping excursion today. Teenager needed some clothes for summer, and JCPenney was having a great sale on the stuff he likes. Buy one, get one for $1. So he's a happy camper tonight with a new summer wardrobe, and my wallet is a little thinner. That's okay, I needed something productive to spend it on anyway. I also need a new bathing suit, but oh no I'm not ready to go there yet. I hate bathing suit shopping (is there anyone out there who enjoys it?) and I'm waiting for the side effects of my new drug to kick in - loss of appetite and weight loss - before buying anything for myself . Might as well make the most of it, huh? Lord knows the prednisone has pumped me up enough that I can stand to lose a few now.

I don't feel too bad tonight after walking around the mall all evening. I have a raging headache, but I think that's just from overstimulation of my poor little brain after all these months in relative isolation. I'm heading to bed soon, and hopefully it'll be gone in the morning.

That's all for now, think I'll go read for a few.

Well, I'm still here so that's a positive! I didn't feel too bad today considering. Actually, I was rather pleasantly surprised at how "with it" I was last night even, and how quickly I was able to come home. I think they started pushing the good drugs at 4:30, and I was able to get up and walk out of there at 5:00 or so! I do have a bothersome sore throat today, but that's about the only deviation from normal. Today has been mostly uneventful as the older three are at dad's this weekend and hubby is away today at soccer games, so just me and the two little ones. There was a poop incident that I will have to post about when I have more time (note to self: share poop incident when baby is not crawling on you).

At any rate, specialist reportedly told hubby that my lungs were full of foam and that he was particularly puzzled by this. But apparently he sent some foam off to the lab to see what the heck is in it, so maybe they'll find something? So not getting my hopes up on that one, but the foam was a new thing lol. I was having a particularly bad day yesterday, maybe the foam was contributing. Maybe it's leftover heads from all those beers I drank in my younger years? That'll teach me!

BUD said he'd call Tuesday or Wednesday with some results, so we'll see what the foam is then I guess. For now I'd better run before baby deletes my post!

I am so tired. I couldn't sleep last night, between the whole not breathing and the anxiety about today's bronchoscopy. I hate that it's not scheduled until 4:00 this evening, gives me too much of the day to think about it, not to mention be very, very hungry and thirsty. Hubby took the youngest two and went out to breakfast at Golden Corral so they won't have to eat in front of me or else starve with me all day.

Today is a pretty bad day, as far as breathing goes. I'm so rattly and wheezy and oh wow do my breathing muscles hurt today. I think stress has an effect on my breathing, though, and hopefully I'll be better tomorrow once this is over with again.

On the bright side, it's a two hour drive to get there, so that gives me considerably less time to think about things. I'll post an update as soon as I can, although I don't expect to know anything for a few weeks as usual.

My nerves are starting to kick in again. I have two days left to ponder the bronchoscopy and I of course have a gazillion fears and questions and unknowns. I do so hate that. When I went for the pulmonary function test, the girl there told me that my BUD doesn't usually do his own bronchs, and that she'd most likely be the one doing it. However, BUD is sending me to the main campus to the big hospital and he's doing it himself at 4:00 on a Friday evening. That's a little scary in and of itself, as I'm sure it's cutting into his weekend. I guess I should be grateful that he cares enough to take the time and look carefully - I won't be worried that he's missing anything. Still, it makes me stop and ponder just how serious my condition must be, ya know?

Hubby refuses to have a serious discussion regarding my mortality. He's in denial and swears we will both live forever. I guess I have to respect that he doesn't want to deal with it right now, but there are certain things that he really, really needs to know in the event of my demise! I have a will that outlines a lot of things, but it really needs to be updated. Not that I think I'm dying anytime soon, mind you, just that having these breathing issues has kind of forced me to realize that life is indeed temporary and in reality none of us know just how long we'll be here. And it's better to be prepared, for your loved ones to at least have a clue. That's my opinion anyway.

My biggest fear is that hubby would take my youngest two and head back to Greece and that my parents and my other three wouldn't have the chance to know them. I know that hubby's intentions would be good, and he would intend to send them for the summer or something similar, but I am doubtful that the reality would work out that way. And that makes me sad.

My other fear is that I'll leave this earth before my daughter is secure enough to get by without feeling like she needs me. I know we all need our mamas forever and always, and the loss of one's mother will affect us at any age. However, my daughter and I have a really close relationship and she's coming up on some rough years (she's currently 12) that I hope I'll be around to see her through.

On some level I feel like maybe this illness has just forced me to slow down and take one day at a time. I think I must have been insane - four children, pregnant with #5, and starting nursing school? Having my blood pressure shoot through the roof, having 2 small TIAs (strokes) and STILL starting back to class and clinicals a couple of weeks later? With a newborn and four others? And a hubby that (let's admit it) doesn't help much? And I wonder why I got sick? On top of that, I was in clinicals many days last year and checking my oxygen levels and being in the 80s, and KEPT GOING! It was going to take something very, very serious to stop me so I guess no run of the mill pneumonia would do.

Lesson learned. I have stopped. I now busy myself with online games when I can't breathe well enough to leave the house. I don't know what I'd do without internet - I probably would have read every book our library has available I guess. I do plenty of that as it is, even WITH the internet distraction. There are plenty of days that all I can manage to do is sit at my desk with my oxygen on. It is hard for hubby to understand, and hard for me to deal with. Nonetheless, I have learned this past year to listen to my body and slow down (or stop if necessary) when it says so.

Well, all this babble really boils down to the fact that I'm nervous about Friday and hope everything will go very smoothly and that he won't find that rare form of lung cancer that he's looking for. A low grade infection, that I can deal with. Nothing new, that's what I'm expecting.

Went to see my B.U.D. yesterday and had another pulmonary function test done. According to it, my lungs function at about 55% of what they're supposed to, and my diffusing capacity (the ability to get oxygen to my body tissue, if I understand correctly) is at 58%. So what that means is I can't breathe very well. Guess I knew that already, didn't need a test to tell me that. A very painful test at that.

He said he presented my case at the pulmonology conference a couple of weeks ago and consulted with several pathologists and many pulmonologists. He put my biopsy slides up on the overhead projecter and let them have at it. No one has any clue. I am unique. He wants to repeat the bronchoscopy and look inside my lungs for himself to look for a low grade infection or a very rare type of lung cancer (the beginnings of anyway). He doesn't think I have either of these things, but wants to be certain before moving on. and then, moving on consists of the chemotherapy drugs that my own pulmonologist recommended a month or two back that prompted me to go for the second opinion in the first place. At least I know they are in agreement I guess.

I think I just have to come to terms with the fact that I'm not getting any better and just hope and pray that i hold steady and don't get worse. I won't be able to live a "normal" live per se, but I'm not dead yet. Hubby gets mad at me when I say these things, but I think at this point it is mentally healthier for me to accept myself as I am and take any improvement as a welcome surprise. Instead, I keep expecting to get better and then I am severely disappointed when I hit a bad spell like the past few days. If I expect the bad spell, I think it is better for me psychologically. Physically it's the same either way, right? I guess he just doesn't want to admit that this is our life now. He wants to get past it, back to normal, and definitely does not want to accept that this is our normal. I can't blame him for that, this is hard to accept, but I think maybe it's healthier for me to leave the dreaming to him for now.

At any rate, i will repeat the bronchoscopy next Friday, but will probably be entirely too loopy from the sedatives to post afterward or know what is going on. I can only hope that hubby can pay attention enough to report to me what the doctor says. He has a tendency to forget things and take only what he wants to hear from a doctor's report. Maybe I'll ask B.U.D. to put it in writing so I can read it when I'm sober.