I think I shall call him B.U.D. #1. I have this image of Rudy from The Cosby Show in my head now, "That's Buuuuuuud." Okay, I digress, and I probably haven't much time so I'd better get back on track.

I went to see B.U.D. #1 today, and I did at least get a smidgeon of good news! Although he doesn't know what's going on and says that my diagnosis made perfect sense in July of 07 but makes no sense now because if that were it I should be better by now, he has some guesses. He suspects it is something autoimmune, because that would explain a lot of other things in my history (the TIAs, postpartum high blood pressure, repeated miscarriages, etc.) but of course I'll have to go give another 20 tubes of blood before a difinitive diagnosis can be made. The good news, however, is that according to him and my most recent ct scan, there is minimal scarring on my lungs and most of what is there is simply inflammatory. This also means it is almost completely reversible at this point. Now isn't that happy news? We just have to figure out how to reverse it! Piece of cake!

Actually, B.U.D. #1 said he'll be presenting my case at an upcoming conference for lung specialists and pathologists and such because I just do not fit any of the diagnostic criteria that are out there. Nothing fits, and that's why so far nothing works. I always knew I was unique, but I really didn't want to be in this case.

I have to go back on March 20 after I have all my lab work done, and maybe I'll get a better answer then. He's ordering the slides from my biopsy to look at for himself, and said he suspects that perhaps there was more than one process going on simultaneously and that no one has (as of yet) uncovered the second process. At least he gave me a little hope, for a little while, if nothing else. I think I needed that based on my recent state of mind. Thank you for the words of encouragement, I needed them!

Kidlets running amok, must chase kidlets, back when I have more time...

Tomorrow morning is my appointment with the Big University specialist for my first second opinion and I'm a little nervous. I might be a little less nervous if I didn't have to go alone, but I guess it isn't to be. Hubby is too worried that we won't get home in time for him to go to practice, so he's staying here in charge of kiddie patrol and I'm going alone. I'll be interested to see how that works out if in fact I don't make it home in time - does he plan on taking all the kids with him to practice? No, he plans on calling my mom, but I happen to know that she will be at work so... He will be stuck. And I will laugh because it will serve him right for not coming with me even after I specifically told him how nervous and upset I was over it, and after I pointedly asked him to please come with me because I really didn't want to go alone.

I really hate depending on others, it just isn't in my nature. And I think it is because of scenarios such as this. I hate being let down, disappointed, and then I feel really stupid for having counted on someone else in the first place. Like I should have known better. My life just seems to go a lot smoother when I don't rely on anyone else. I think this has been a major, major issue for me being so sick this past year, too. I've had no choice at times but to rely on someone else to get things done for me as I have simply been unable to do it myself. And it isn't just hubby. I remember very well an incident where I had been counting on my mom to help watch my kids, and she got mad at my sister and therefore (of course, perfect logic here!) she just didn't show up one morning. Thankfully I survived, and the kids, but it was a blow (physically and psychologically).

At any rate, I'll be going tomorrow and I'm quite nervous about it, but I'm looking forward to another perspective anyway. I'll post back as soon as I can, but I'll be here alone with the kids tomorrow night so who knows how that will go or when I'll next have five minutes to myself.

I was just browsing through some old posts of mine, and how very enlightening that turned out to be! I went back to Dec. of 06, just after I'd had the baby and first got really sick with the high blood pressure and strokes. Strangely enough, by January (of 07) I was already complaining that I just wanted to feel "normal" and get back to life as I knew it! If only I'd known then that over a year later I'd still be begging to get back to normal... nah, it's probably better that I didn't know then!

Still, I read about pushing myself to get back to school, even though it sounds from my posts like I should have given myself a break. I read about clinicals and how tired I was and how I was complaining even then that hubby didn't help (or didn't help enough). And here I am, a year plus later still expecting that somehow he's going to miraculously do more? I guess I am a slow learner!

I guess I really need to change my outlook. Or maybe not. I'm not sure. Is it better to remain hopeful that someday I'm going to get better? It only makes for many disappointing days when I realize that in fact I am NOT getting better overall, just coping more effectively. Or is it better to go ahead and accept that this is a chronic illness that will affect me for the rest of my life, and I'll never be able to hike the Grand Canyon? Should I be realistic and just give up on those scenarios and dreams? Am I being optimisic or unrealistic, or both? And even if the dream is not realistic, does that mean it is necessarily unhealthy from a mental standpoint? Is is wrong to set myself up for disappointment like that? Or maybe it's healthy because it gives me hope from day to day? Who knows.

On some level, after a year I can acknowledge that this is a long term chronic illness. The pulmo guy formerly known as crappy told me the other day that I'd probably never be able to finish nursing school and advised me to apply for disability. I guess that's what got me to thinking about all this. I usually like my dreamy optimism, even if it's not realistic. It gives me hope and gets me through the day. Am I in denial? Maybe. But that's okay with me for now. And if this history repeats itself and I'm still sick this time next year... well, I just don't want to know about it right now.

So, anyone know anything about Cleveland Clinic? Obviously I've only ever heard good things, but damn Cleveland is a long drive for me. Crappy pulmo guy set me up for another second opinion and made me an appt. at Cleveland Clinic. It's not until the end of March, so I have some time to research and decide if I want to keep said appt. or not. He wants to know what someone who specializes in my particular disease thinks and how to proceed from here. I'm happy that he's admitted that he doesn't know what else to do with me. I can respect that, I don't expect him to know everything, only his own limitations. I don't want to be a guinea pig, that's all. So today I actually have a little more respect for crappy pulmo guy and may have to consider changing his title to the pulmo guy formerly known as crappy.

Hubby had his knee surgery today, and oh my gracious what an entertainment filled endeavor that turned out to be! As it turns out, hubby has never had so much as an IV before, never been hospitalized or seriously injured. I guess he's pretty healthy and whole! I did not know this about him until today.

So, first of all, the doctor had told him to go yesterday and get some presurgery lab work done. And yesterday, registration called him to get him registered for the surgery and they told him, "You don't need to come to registration, just go straight to Same Day Surgery." He understood this to mean, "The doctor no longer wants you to have your pre surgery lab work done, just go straight to surgery." Of course, registration is not affiliated with the doctor's office and they meant no such thing. So I asked him this morning if he got the lab work done last night and he told me about the phone call and explained he didn't need it now... Having worked registration myself until halfway through this past pregnancy, and having been associated with same day surgery sometimes, I knew he had misunderstood. I suggested he call the doctor's office to confirm. He refused and asked me to call for him (English is not his first language and he gets flustered in these situations).

I called and clarified, and the doctors office said GO NOW! It was about 11 a.m. and he was to be at Same Day Surgery at 12:45 for prep. So, he went and he called me while he was there because there was another mix up or something and he got all mad at me and hung up on me... I was terribly confused. But he came home and we got the kidlets ready and headed to the hospital, arriving on time at 12:45. Woohooo, right?

I should also mention I had to take the baby (15months old now) and the four year old with me, and was otherwise alone. This is significant as it wore me OUT!

So anyway, we get in this little room and they tell hubby to put on the gown. He looks at the nurse like she has two heads. He tells her he'll just wear his own clothes. She explains that he needs to be nekkid under the gown. He asks if he can leave on his underwear and tshirt. SHe repeats, nekkid. He says, "You do realize you're operating on my knee, not my xxxxx, right?" I lose it. Poor dear hubby. He is 6'4 and they gave him a standard size gown so the thing looked like a miniskirt on him. Then he was upset that he had to remove his jewelry. He asked a million questions about the IV and nearly cried when they were putting it in. Our four year old, however, was fascinated and sat there mesmerized watching them poke daddy.

Then they brought out the razor to shave his leg. I seriously thought he was going to get up and leave. It was too freaking funny. He was cussing them out in Greek. Good thing four year old decided NOT to translate for him today (sometimes he does, and he'll say something like "Awwwwww, daddy said the f-word!")

So they took him to surgery and I chased these two around the waiting room for a couple of hours. Really they were angel children, and we took a backpack full of toys and treats and such, but still it was so tiring keeping them out of trash cans and cabinets and other people's stuff... It was just tiring (and my oxygen levels were only 90 today to start with!) Eventually, they called us to go back to hubby's room where he was waking up. Kind of.

He couldn't speak or understand English, and the nurses were kind of freaking because he wouldn't respond to them. He looked at me and asked in Greek what the heck they were saying and doing to him. Entertainment, I'm telling you.

At any rate, we finally got him home and upstairs in bed and he's been sleeping pretty much ever since. The baby is asleep on my lap, and the four year old is watching TV. The older kidlets are not home yet, so I have peace and quiet for the moment.

Hubby has to follow up at 9 in the morning, and with any luck he'll sleep until then! And I hope his poor knee feels better after all this!

Can it be spring yet? I know I should get over it already, and sone of you hear from me every stinking winter but jeesh I hate winter! That probably has something to do with my crabbiness lately. Today is fairly nice, sunshiney and bright, but tomorrow night we're supposed to get more SNOW! No! I don't want any more snow. I want sunshine. I want flowers. I want to not freeze outside. I want to plant my garden. I missed a lot of gardening last year due to being in the hospital so much and then being sick once I got home. I'm really looking forward to growing stuff this year. And on that note, a friend just sent me a great box full of seeds!!! I can't wait to plant them. Really.

In other news, hubby is having knee surgery on Wed. I also have an appointment with crappy pulmo guy that day. Hubby is convinced he won't need to take any time off work for said surgery, and will be just fine by Thurs. I really hope he's right, but somehow I doubt it. I think the stairs are going to get to him (we only have one bathroom, and it's upstairs). I hope I'm having a good week next week and am able to take care of myself and him (not to mention the kids).