Between my crappy internet and the problems that the Stream has been having, I haven't been able to consistently log in and update and I apologize. I started a new blog over at wordpress (because I can't just not blog!) and it seems to be much more agreeable to my crappy connection so I'm thinking I'll stay.

Here's the new home: palikari.wordpress.com and I hope to see you there.

It's about... 5:30 a.m. here, and I'll be leaving with some kidlets in about an hour to go cast my vote.

It's been a rough week and I've been sick as hell quite frankly, but it isn't really related to my breathing. I think I'm having some yucky side effects to some med that I'm on, because the yuckiness has mostly been related to nausea/vomiting and just feeling icky. Of course, I've also had this lovely, wonderful insomnia that just won't quit! I haven't been able to sleep past 4 a.m. for over a week now, and I don't go to bed until 11 or 12. Therefore, I'm betting that much of the ick factor is related to lack of sleep, which is probably brought about by one of these lovely pharmaceuticals.

I think the whole allopathic medical field sucks. I can't see how they have done a single thing for me, other than pump my body full of chemicals and toxins which aren't even helping with the things they are designed to help with. I guess it might be useful for conditions which have known (and proven) treatments and/or cures, but for a condition like mine that has no successful course of action it really sucks. My only consolation is that perhaps by allowing myself to be a guinea pig for experimentation, future generations of people with this disease will have a known and proven course of treatment. They will also know to avoid the drugs that only cause side effects and offer zero relief. The other hope, of course, is that one of these lovely chemicals WORKS like it is intended and I see an improvement in my condition.

I am just really frustrated by the medical community right now. I do not understand, for the life of me, why they think it necessary for a SICK person to ingest 30+ pills per DAY and then they sit back and wonder why the side effects are what they are. It doesn't seem like rocket science to me. However, the problem lies in the paradigm itself, as Western medicine has to DOOOOOOOO something. For now I wish they'd leave me alone, I think I'd be doing better without the thousand pills and accompanying side effects.

That's the end of my rant for today as I awaken from another sleep-deprived night. On the bright side, I should have plenty of time to get my vote in!!

I am so lucky. Truly.

First, the good healthy news. I went yesterday for my blood work, which I have drawn every two weeks now because one of the meds is toxic to livers and I have to keep an eye on my liver function. While I'm there I always check my oxygen levels just to see where I'm at, and yesterday was no different. It was rather chilly, and as such I was walking briskly from the parking lot to the hospital, and still, when I got there and put the oximeter on my finger...

dum duh dum...

100%!!!

I couldn't believe it. I took it off and put it back on and made the nurse check hers because I was convinced the thing was broken. Of course, my dr. reminds me all the time that having a good oximeter reading does not really indicate an improvement in the underlying disease, but an overall trend toward higher readings definitely points to better oxygen exchange going on in my lungs. So yay!

In other blessings, someone has GIVEN us a freaking car! Yes it's true fellahs, there are still some pretty freaking awesome people out there in this old world, and one of them donated a car. I haven't actually seen the car and I've been told that it isn't that great (it's free, who cares!) but that it is reliable and will get hubby or me and the kids from point A to point B. One of the dads from one of hubby's teams is an active member in his church, and when he heard of Fred's demise he told hubby he'd keep an eye out because sometimes (especially around the holidays) they have donations. And TWO DAYS later someone donated a car. Unbelievable.

The only negative here is that I feel physically like utter crap, but I think it is from meds and not disease. I'm having a lot of stomach issues, nausea, light headedness, overall BLAH, tired, insomnia, and really I just feel yucky. But I can take it easy the rest of the week and hopefully get to feeling a little more human. It's hard to lay low when I'm feeling so happy and ecstatic about life's circumstances.

Wanted to share my happy news with you all since you're always here for the bad days.

Once upon a time, hubby was convinced that moving to WV would save us soooooo much money, as he was driving 100+ miles every day to and from work. However, now that we are here the money that we were supposed to save seems to have disappeared. Everything is more expensive in WV, EVERYTHING! We went today to have our car insurance switched, and we will pay an extra $60/month for the same coverage we had in OH. Our cable is more expensive. Our internet is certainly more expensive, and more sucky as well. They have a luxury tax on cars here that OH didn't have which we'll have to pay I think when we get our tags switched over. Our rent is more expensive. Groceries are more expensive, and WV charges tax on food while OH does not.

Of course, even with all that I'm happy to be here because the breathing is better (at least for now!) and the atmosphere and surroundings are just such an improvement that it is worth the extra expenditures. Hubby is disappointed because he honestly expected to be saving a lot of money. I guess I was a little more cynical as I didn't really think we would save much by the time everything was factored in, but he acts as though this is a big shocking surprise. It's a mystery to me. At any rate, it's worth it to me and with any luck we'll be able to buy this place next year. I really do love it here.

In other news, although my breathing is still okay my pain level has increased significantly over the past week or two. I don't really understand why or how, but it is what it is. I wish it would stop, it really, really sucks when every breath hurts.

I did have a rough breathing day yesterday and had to have a breathing treatment for the first time since moving here (I think?) but I'm better again today. I'm also cutting down my prednisone to see if there is any change, so that may affect me negatively as well. We'll see. I'd love to get rid of that stupid drug, I hate it. It has so many negative side effects, and I honestly don't think it helps as much as it hurts. I don't know if I will ever be able to come completely off of it, however, as it tends to mess up your body's systems when you are on it as long as I have been. Still, if I could get down to a low maintenance dose that would be great!

The kids are having a blast, they love it here too. The little two like to go around and around the room with their cars and/or tractors chasing each other. And the middle two boys love to be outside playing badminton. My 4yo is scared of bears though, and won't go into the woods at all. I can't convince him that we don't have any bears that live near our house, and in fact he won't go to the bathroom alone at night because he's afraid a bear will be waiting in the shower or something. Poor kid.

That's about it from here for now. Nothing too exciting you see. I like it that way every once in a while, it's a nice break from the chaos.

Yes it's true, I am stuck in the boonies for the time being. I will be stranded here all weekend while hubby is out of town. Just me and the kidlets. At least we have plenty of room to roam and hopefully the weather will hold so we can spend most of the weekend outside.

Hubby took the van yesterday, supposedly for an oil change, and came home with $900 worth of repairs. He said he thought it best to go ahead and have them done since the van was our only means of transportation at the moment. That may be so, but it didn't help lessen the shock of it at all. I hope said van lasts a while, it isn't paid for yet.

I don't really know what we're going to do about another car. I really, really, really don't want another car payment. We could probably swing it, if we had to, but it would certainly eat up any wiggle room that now exists in our budget. I'd love to find something Fred-like that would suffice to get us around locally, get the kids to activities or hubby to work nearby or whatever. Or quite honestly I wouldn't mind spending the $$ to get Fred fixed, because even though the repairs cost more than the car is worth, they cost less than the price of a replacement vehicle. But hubby is dead set against repairing, so for now the kids and I sit home.

Enough of the negative, let me tell you about something positive!

First, I took the baby to his first political rally last week. We went to see/hear Obama in Ohio, and he was such a good boy! He was clapping along and chanting OBAMA just like he knew what was going on. It was terribly cute.

And second, I have to say that my breathing has been really great these past few days! I am hesitant to think that perhaps it was that house contributing all along because we all know by now that I have good days and bad... perhaps I am simply on a stretch of good days? I am cautiously optimistic at this point, and hoping that the good breathing continues. I know I can never regain the lung function that was lost to fibrosis, but if the progression of the disease would simply stop... well, that would be FREAKING AWESOME! I'm almost afraid to hope, because I'm afraid to be let down, afraid of the hopelessness and despair that is sure to follow if I don't see a stabilization of this disease.

And yet... here I am, hoping. The past few days have been very good, and I haven't needed oxygen for over a week. Let's hope the trend continues.