The medical community in this country really is frustrating when you're dealing with a chronic illness. At some point, you start to think you know more than some medical professionals, and honestly I probably do know more than some about my lung problems if only because I've taken the time to research my particular issue. A doctor who sees 20 patients per day simply does not have the time to research that I do, and as such I am probably much more up on the latest treatments than some professionals. But that is not my gripe today.

My gripe today has several components, the first of which involves adequate pain relief (or the lack thereof). Honestly, pain relief has been a problem for me since last summer when they disconnected my dilaudid pump and discharged me to home without so much as a tylenol. I did have my little hissy fit then (because seriously, if I was bad enough 2 hours ago to warrant a dilaudid pump then really, don't you think I need *something* to go home with?) and get some short term relief which I had hoped would be all I needed. I did manage to get by for a while on ibuprofen and the occasional ultram, and still can sometimes. But on those really bad days, every. single. breath. hurts.

At some point, my pulmonologist addressed this issue and took mercy and prescribed percocet. I think I blogged about it, because I was truly happy. I had some guilt and concern about becoming addicted, but when you're dealing with a chronic and potentially fatal disease, really, an addiction to percocet is the least of my worries right now. I just want to make it through each day with the least amount of hassle. Of course I want to breathe smoothly and freely, and I don't want each breath to be painful. I took the percocet exactly as prescribed, never called for an early refill and often took less than the allotted amount because some days I really don't need it. However, every time I had to call his office to ask for a refill his nurse made me feel like such a lowlife! I would be in tears because my choices were either to call and feel like the scum of the earth for needing a refill, or suffer in pain until my next appointment. I often chose to suffer until my next appointment, and I really tried to make the script last long enough to not have to call.

Then she started mentioning it when I came in for my regular appointments, little jabs here and there. And finally, she told me that I really should be getting these from my family doctor and that the pulmonologist doesn't usually write narcotic prescriptions after a month or so. I don't really understand this, as it is a lung issue that is causing the pain so...

Anyway, I adore my family doc but he has a no-narc policy that I am well aware of. It is posted in his office prominently (honestly this town does have a drug problem and particularly with oxy and when I worked in the ER I saw it every night so I can understand). Still, at my next visit I told him that my pulmo had been writing my percocet script but wanted him to take over and could he do it? He said that for me he would make an exception to his no-narc policy and to call if I needed a refill before my next appointment.

I came home and cried that it was such a freaking relief that he didn't make me feel like scum of the earth for asking for pain relief. And I now have so much sympathy for chronic pain sufferers. I'm thinking that as far as drugs go, there must be substances that are much easier to obtain? But what the heck do I know, right? I just think that doctors (or nurses - let's just say medical professionals) really could be a little more understanding when a patient has a documented problem. It's not like I'm faking a lung disease just for the pain killers ya know? Back pain, headache, whatever, I can understand the hesitation somewhat (although I don't think anyone should suffer in pain needlessly) but give me a little credit, jeez.

Okay, there's more to my gripe but baby needs attention. The older ones are all away at the moment so he's lonely. I'll have to come back later, baby first.

Ugh. Moving means I have to pack. Can I just maybe pay someone to come and do that for me? What do you suppose someone would charge for that service? It would absolutely be worth it, in my current opinion. It seems I have approximately 6 weeks and change to get everything done which in theory seems possible...

However...

The first three weeks (starting today), hubby has soccer camps from early until late. Basically, this is the three weeks of the year when he has to work hours like normal people do for the entire year. It almost kills him, quite frankly, and I laugh at him every year at this time. He swears that there do not exist other professions where people have to be outside for more than 5 hours per day in the summer. I don't know what he thinks construction workers, roofers, road construction crews and such do. I guess they only work 4 hour days? At any rate, he'll be gone for most of the day, and what time he is home for these three weeks i know from experience he will be useless and I will be expected to feel very sorry for him because he worked SO HARD all day. I really don't doubt that he's tired, but I do have to make fun of him since the rest of the year he works like 3 hours/day (TOPS) and thinks that is NORMAL. Yeah, he's a little spoiled.

Anyway, I digress.

So these first three weeks hubby is useless, and the last three weeks he is leaving for Greece. On the bright side, he is taking two kids with him and three kids will be with THEIR dad which leaves me a FREE MAMA for three whole weeks! Whatever will I do with myself you ask?

Well, pack it seems.

But, I also am going to see my very best friend (again) which I am very much looking forward to. AND I'm taking my teenager on a whitewater rafting overnight horseback riding camping adventure! Okay, we're doing the baby rapids because I've never been and I'm not sure how much my lungs can stand, but we are both looking forward to it.

And when hubby gets back, everything should be packed up and ready to go.

Did I mention that my new house is like half the size of the one I currently reside in? In a way I'm looking forward to the challenge of simplifying, as I really do believe that we have entirely too much stuff. On the other hand, I'm freaking out a little that I'll never get rid of enough stuff to fit us in that place. What the heck was I thinking? Oh yeah, one level, new construction, 15.5 acres on a dead end country road that is only ten minutes from the mall? Does it get any better than that? Oh yes, it does! A small river goes across the back edge of the property, and we can fish from our back yard. AND we are having soccer fields put in on the front half so hubby can have his practices there next fall. He won't even have to leave for three hours! And if I'm having a particularly rough day, he can take the kidlets outside with him!

But wait, there's more good news! The universe loves me today, really! So a while back I took some forms to my doc to sign saying that I was permanently disabled and would never be able to work productively again so that I could apply for a waiver, to forgive my student loans. SallieMae (well the rep at SM anyway) said it never happens, but they sent me the form anyway, and I filled it out and sent it in to the Direct Loan people at our lovely U.S. Dept. of Ed. I got notice that I have been conditionally approved, and they are going to forgive my student loans! Entirely! I have an M.A., and around $100,000 in student loans so this is significant. They've been in deferral for the past year (since quitting nursing school) but there is no WAY I'd have been able to pay them back in my current shape.

So yay for some government programs actually coming through when they are supposed to! Of course I would gladly trade this stupid disease and be healthy and breathing again and happily pay back the $100k in student loans. Still, I'm glad this option is there for situations like mine. I'm sure it doesn't happen often. If I get well within the next three years the conditional waiver is void and I'll have to pay them back. Seems fair. If I'm not better within three years, they assume I'll never be well and it becomes permanent. Or at least that's my understanding of the stuff they sent me. That is freaking awesome.

So even though my breathing is CRAP again at the moment, I am stll hopeful and optimistic for the future. Maybe the new house is the key. Or the new town. Or maybe the xolair will start working.

Oh, and someone pointed out that I never actually said on here what my official diagnosis is, so for those that have followed my story I apologize. Officially, I now have idiopathic pulmonary fibrosis, which I guess is a fancy way of saying that there is scarring in my lungs and they have no idea what is causing it.



The baby started singing (Backyardigans mostly) and it is so freaking cute! He also says "I presh" because I tell him all the time he's precious. And really, they all are.

That's all for today.

Vacation was awesome, and I'm ready for another one! I'll start by saying that the best thing was that I didn't have a single breathing problem the whole time I was gone. After the first night I didn't wheeze, cough, need a breathing treatment, or anything. I haven't felt so good in a while and it was nice. I don't know if it was the weather, the sea air, or maybe it's something in my house or environment here making me sick but it was really, really nice to breathe semi-normally for a week. Not to mention it gives me hope that this is reversible somehow, to some extent.

The kids were freaking awesome. I honestly can't believe how good they were. I thought I was a bit insane taking four kidlets on a sixteen hour car trip, even if we split the drive into two days. However, they surprised me and reminded me why it is that I adore them so. They were four little angels, mostly. We stopped the first night at a friend's house who happens to live halfway between here and there. She doesn't have kidlets, but mine were right at home at her place. They particularly loved the cats. And the games. And the chalkboard (oh who am I kidding they LOVED the chalkboard). And the badminton... okay, they loved her house and they were really upset that we didn't come home the same way and we didn't get to see her house again. But we left up there late in the evening which would have put us to her house somewhere around 3 or 4 a.m... somehow I didn't think she wanted to wait up for us until then, regardless of how much she might have missed me.

It was really great to see her, if only for a night, and it was a nice little preview of August when I'm going back to visit her alone. Can't wait!!!

I had no idea how beautiful Maine is! SOmeone should have informed me, really. I've never been that far north or east before, and I have to say I was quite impressed with the natural beauty. The sea was really freaking cold, but still refreshing and beautiful. We found a nice beach with some cool tidal pools that were warm and shallow enough that even the baby could play and splash and we all had a great time there. The kidlets got to fly their kites on the beach, it was perfect! We built sand castles, and all that other fun beach stuff, and now the van is forever coated in a fine layer of sand.

On the fourth (or so) day the weather turned and really sucked quite frankly. I had planned that day as a "down day" anyway, as I figured I'd need some down time to recover and breathe. Turns out I didn't need down time (yay!) so we went and rode the Narrow Gauge Railroad which the boys loved, and went searching for lighthouses. We found a few and had a famous "Mommy Adventure" getting lost looking for a few more, then we stopped at a little seaside place for fresh lobster. It was great, even if the dinner did cost me over $100.

All in all, it was an awesome, awesome trip and I'm so glad we took it. It helped me feel a little more confident about myself and the ability to travel with this stupid disease. I have to say I was really worried before we left, but I worried needlessly.

Today we're off for some fourth celebrations, cookout and maybe a boat ride (paddle boats or something) and fireworks tonight.

I would say it's good to be home, but considering my breathing problems have returned already it's really not. I'd rather still be in Maine lol.

I've got that Go-Gos song in my head now... Vacation all I ever wanted - Vacation, have to get away. Oh yeah. I'm cool.

We are going on "vacation." Six of us. On a trip that involves 16 hours in the car before reaching our destination. Yes, we're insane.

We're leaving Tuesday for a trip to Maine. One of hubby's teams is in the regional championships, and it happens to be in Portland, ME this year. Our hotel, gas, and hubby's food are paid by the team so the kids and I are tagging along for a "free" vacation. I put free in quotes because I have so many things planned that are most definitely NOT free . Still, it's nice to have the gas and hotel covered, those were the big expenses.

We're going to stop on the way at my dear friend's house who happens to live halfway between here and there. I'm super excited about that, because I haven't seen her for YEARS! And this summer I'm going to see her like three times! We're just going to eat and sleep there Tuesday, and again on the way home (probably, we haven't decided that for certain yet) but still it will be nice.

So, today I'm freaking a little about all the last minute things I need to do before leaving town for a week. Like stop the mail and make sure I have enough of all my prescriptions to last until I get home. I'm a little concerned about the oxygen situation, because I don't have one of the portable concentrators. I have a tank that is portable, but it will only last for a couple of hours so it's not something I could like sleep with or whatever. I should have asked at my last doc appt. if I could get one of the portable ones for trips but I didn't think of it until it was too late. So hopefully the nebulizer will be enough for the week and I won't have any really bad days.

My saturation levels have been up considerably. I have a home health nurse who usually only comes and takes vitals once a week and recently I've been up at 95% on ROOM AIR! That's really, really good for me. So maybe the new drugs *are* working, although it's really hard to say without a CT for confirmation.

Anyway, hubby only has one game per day and we intend to spend the rest of the time vacationing. I've booked us for a whale watching tour, something I've always wanted to do and never had the opportunity. It's costing an arm and a leg with the six of us, but oh well. I can't talk my 16yo into going with us. He said 16 hours in the car with the other 4 kids didn't sound like his idea of a good time. Can't say I blame him really. I might be regretting it myself by about hour 10.

So we leave Tuesday and I won't post while we're gone. How long we stay depends on how well hubby's team performs. We'll be there at least until June 30, and potentially a few more days.

Hubby had another tourney this weekend, so I decided to tag along with the youngest two. We went to the zoo by ourselves on Saturday - I was feeling adventuresome - and we had a great day! Youngest is now 18 months, and BOOOOOOOOOOOO is his word for any large animal. I think it came from us telling him that cows say "mooooooooo" but now he will point at horses, cows, whatever and yell, "I do see BOOOOOOOOO!" and if he's not in his car seat then he'll start jumping up and down as he points. It's terribly cute.

So, you can imagine what the zoo was like... Walk up to the moose exhibit...
Jumping up and down...
"I do see BOOOOOOOOOO!!!" with much pointing and jumping.
Me: Okay, let's go see another boo
Baby: Bye BOOOOOOOOOO! (accompanied by frantic hand waving)
Walk up to the bear exhibit...
Jumping up and down...
"I do see BOOOOOOOOO!!!" with much pointing and jumping.

All day long. I also had the foresight to grab some water guns at the Dollar store (4 for $1, hard to beat that!) and took a bag full of them with us. I think we had about 8 total, and every time we stopped for a potty break we filled them up again. So 4yo and me spent a lot of time squirting each other (and baby) all day, and passers-by were very jealous. It helped us stay cool, and gave me a way to distract them when they got cranky.

But, the amazing part is that we were at the zoo all day long, by ourselves, and it didn't totally wipe me out. I did all right! I had to stop and rest a few times, mind you, especially on the hilly areas and I was dragging that wagon up the stinking hill to the train ride... but really I was okay. Hubby finally joined us at around 5:00, and we left and both kids crashed in the car as soon as they got buckled up. Really, they were both very well behaved and it was a great day.

Today I took them to the park for a few hours while hubby finished up his tourney, and wore them out completely again. Again they both crashed as soon as they hit the car, which made for a very peaceful drive home (2 hours from tourney to here).

Now, however, mama needs to recover for a day or two. I can really feel it tonight, that tired to the bones feeling... but it's not a "sick" feeling, just a tired feeling that I think is completely normal even for well-breathing folks after a weekend like this.

Well, 4yo needs mama to put him to bed so I guess that's all for now. Happy Father's Day to the daddies out there.