Just wanted to say thanks to those of you who pop in here and post encouraging words. I know I don't always (or even usually!) respond individually to comments, but I am always reading and it really helps when I've had a rough few days. Nice to know someone out there in cyberworld is pulling for me.

My next appointment is Wed. with local pulmo guy. He should have the notes from BUD by now, so we'll see what he has to say. I suspect it won't be much different, just more of the same. An increase in meds, perhaps. I'm kind of hoping they have something they can give me for the nausea, as it's been a little troubling to not be able to eat at all. I like food!

Otherwise, it's been a rough few days with me feeling worse than ever and hubby out of town for the weekend. He should be on his way home now, however, and hopefully I'll get a little break tonight. I thought I would die last night before the munchkins finally went to sleep. But I didn't, and they did finally sleep, and it was a peaceful night (thankfully) without many middle of the night wake-up calls. I'm still feeling rough today, but maybe not quite as rough as before? It's hard to tell. I did start taking the new meds at night with the hope that the nausea would mostly hit while I was sleeping. It doesn't seem to be working all that well, as I'm still quite blah but I did manage to keep down a few bites here and there. Small, frequent meals, right? Just like morning sickness I figure, and I've dealt with that enough times to know how to cope .

I went today back to the university to repeat my pulmonary function tests. They were worse than the ones I did 20 days ago. However, 20 days ago I was having a very good day; today, I was not. I don't know how much the day-to-day influences the test, but I'm off to do some research and find out. I suspect BUD will be calling to increase my dosage on these stupid meds.

What else is new, right? I haven't been able to eat since the trip with hubs a couple nights ago. I tried, really I did. The few bites I attempted didn't stay down very long. I really hope that this nausea subsides at least a little, because I'm feeling really really awful. Last night all I could do was lie in the floor and let the baby crawl all over me (he thought it was a fun game) until time for bed. I thought bedtime would never come. Today is not much better, except my mom has the kids excluding baby. She is taking 4yo to his first tball practice, which made me cry because I can't do it. And then I cried some more when I found out that teenager skipped school (again) last week and is going to be suspended (again) and won't pass his classes (again). I am seriously on the verge, that boy needs to go live with his dad I think. I just can not physically keep up nor can I give him the amount of attention he apparently needs right now. I don't honestly think his dad's house is the answer, as they don't have a good relationship anymore, but I am truly at a loss as to what else to do with him.



Days like this I really just want to crawl back into bed and stay there for the duration. I hurt physically and emotionally, and it is just draining. I read about others with this disease and it seems so hopeless. So many things that I want to do, and I just CAN'T and it drives me bonkers. I have one wall that needs painted, for example. I filled the holes in it MONTHS ago, and I see that wall a gazillion times a day. It's a small wall, maybe 5 feet wide by 7 feet tall, at the top of my staircase. I really, really, want that wall painted to match the rest of the walls! But I can't. I simply physically can't, and if I did then I'd probably make myself 100 times worse by breathing in the fumes from the paint. You'd think certain other adults who also live in this house might paint it, but no. It is not to be. Alas, I will have to hire a painter I'm afraid.

Likewise with the kitchen cabinets. Before I got sick, I had started refinishing them and I got about half of them sanded and re-stained. The other half still look like CRAP because the supplies sit in one of the empty crappy looking cabinets waiting for me to be well enough to go finish them. Guess what? Not gonna happen. Maybe the fellah I hire to paint can also sand and refinish kitchen cabinets.

I'm very discouraged today. I hate days like this. I hate feeling this way. I hate it when my optimism doesn't work. Every little thing just gets to me and I can't stand it! Make it stop.

So we went with hubby to work yesterday because we had an appointment to look at a house (for rent) before his practices. I walked in to the rental management place and told them I was there for an appointment to see said house, and the woman replied, "Oh, actually we've already rented that one." I was holding in my hands a pamphlet-type document that had a bunch of properties for rent, and I was so angry... I looked at the girl and said, "Lady you must be kidding me! I just drove an hour and a half to view that house, and you couldn't even bother yourself with a phone call?!?" I threw their pamphlet in the floor and turned around and walked out. My 4yo was with me and he got back in the van with everyone else and announced, "Mommy is M-A-D MAD!" I just can't fathom what planet they live on that this is an acceptable way to do business. Well, thank goodness I'm not renting from them and I guess it's good I found out early how they operate rather than later. A simple phone call, people!

At any rate, we then had to sit at the soccer fields for three hours while hubby conducted his practices but it wasn't so bad. I wish I'd known beforehand where the practices were, as it was a perfect place for kites or remote control vehicles. A huge, huge, huge, wide open space without trees or power lines or puddles, just perfect for kite flying! We'll know for next time, and maybe the three hours will go by a little quicker. As it was there were some other kids there for the first practice who nicely matched the ages of my kids, and they played together for a while. The second practice, however, left them on their own and that hour and a half stretched on forever. At least it was a beautiful spring day and we were comfortable outside in the sunshine. All in all, it was probably good for me to get out of the house, despite the fact that I'm aching all over this morning.

And still no new house. The search continues. No hurry I suppose.

Today feels like spring, it is truly an awesome day! I can't get enough of days like this. I hung my clothes outside to dry today. I don't know why that makes me happy, but it does.

I've been on the strong immunosuppressant chemotherapy drugs for a few days now. So far the only real side effect to speak of is an intense lack of appetite and some nausea when I try to eat in spite of said lack of appetite. That's not so bad for now, as I've gained a good 15 or 20 lbs from the steroids and can stand to not eat so much for a while! However, my usual self is pretty small and they intend to have me on this stuff for at least six months, so if it continues I may wind up having to ask for something else to help with the nausea. Or maybe it will go away with time. We'll see I suppose.

I've been having a very good few days as far as breathing goes. I hate to say anything for fear I might jinx myself, but it seems I travel in these up and down valleys and mountains anyway so what the heck. I'll be adventuresome and say I've had a good few days! I'll go on Friday for a repeat pulmonary function test and compare it to the one from a few weeks ago. See if the new med is having any effect yet (other than the obvious nausea that is.)

We're going to look at another house tomorrow, all one level and closer to hubby's work. I sometimes feel that I really need to get out of this house, and often even wonder if it isn't something in the house itself that I am reacting to. It's not an over-the-top hypothesis. It's as good as any other as far as I'm concerned, since the best specialists around can't make heads or tails out of my disease progression. Not only that, there is so much tension with my mom and my sister and my teenager and it is indeed so much easier to just leave the problems behind and run away! Not effective in the long term perhaps, but good enough for now. And that's good enough for me at this particular point in my life. I'm all about reducing the stress.

I might feel differently if perhaps I had any sort of HELP from said family, but the reality is that they only ever call me when they want something. I found out my sister used my identity to take out a loan at a local place after she asked to borrow $2k from me at Christmas time and I said no. Our SSNs are only 2 digits apart, so it's quite easy for either of us to pose as the other. And we look enough alike that no one would really question it (or at least we did before I gained this weight and round face from the steroids lol). Hubby doesn't know about this yet, but that will cause more tension because he will want to prosecute which I just can't see myself doing. I didn't need more drama in my life, I have plenty as it is thankyouverymuch.

My mom, well, I'm still not over that incident last summer I think lol, not that I hold a grudge or anything... the one where I had just gotten out of the hospital and she was supposed to take the kids but didn't because she was mad at my sister? And didn't bother to call? And justified it because she doesn't like my hubby's job? Yeah, I'm just tired of the negativity. Tired of the drama. They can keep it. And they can call me if they ever decide to grow up
.

So we're looking at another house, about an hour from here. Close to where hubby works. We'll save a fortune in gas! I will miss my yard here, however, so I hope we can find something comparable (or better!)

Okay, time to get mr. baby pants ready for bed so that's it for tonight. I'm surprised they let me type this long uninterrupted, they must be into something.