Feels like summer!!
Summer is my favorite time of year. All 3 of the other seasons make me depressed, tired, anti-social, and the anything-below-80-degree-weather makes my bones hurt. Winter clothes make me feel claustrophobic, and it annoys me when most of my sisters are in GREAT moods in the winter. I have no idea how 50 degrees (ie, freezing) can be at all appealing. Last month, when the first warm day hit, I wanted to sing and party. Like magic, I was immediately in a better mood, I had a ton of energy, and just felt a lot happier. Seriously...be my friend in the summer. I'm really nice for several months in a row.
Good things happen in the summer: No school, family vacations, spontaneous road trips, flowy skirts, flipflops, swimming, rain, Sonic happy hour, daylight savings time (!!!!!), church picnics, and sun tans. Seriously, what's not to LOVE?
Call your local congressman and tell them to make daylight savings time our standard time. I mean, come on, is there even one good thing about looking out the window at 5pm in the winter and seeing a pitch black sky? It's no wonder depression and suicide go up in the winter--they've taken away the sun! I say, put it back. Is there one bad thing about looking outside at 9pm in the summer and still being able to see everything? The world would be a better place if we would all get a little more sun.
This summer has been/will be a busy one for us! Early next month, I'll be starting a nurse aid course that will enable me to get a really nice, steady job in a hospital this fall. It's a 3 week course, and at the end I'll take the state exam, and then I could immediately start a job at any hospital. The nursing shortage is so great right now that you can basically just pick which floor to work on and what kind of hours you work. They're that desperate for people to work. I will hopefully cash in on that desperation and get a job at a hospital very close to our house, and my first choices for floors are labor & delivery or newborn ICU. I eventually would like to go into midwifery, so it would be nice to start there and get a feel for things. Taking this course will be helpful in several ways: 1) I will get a job that I think I will be good at and think I will enjoy, 2) I will be able to make sure that I can do that kind of work even in my weakened physical state, and 3) I will be able to get references from RNs that will boost my chances of being accepted into clinicals at the nursing school. So I'll take this course, and if the Lord wants me to continue in this nursing track, I know everything will fall into place.
I told you a few weeks ago about the nerve blocks that my neurologist gave me in March. I was seriously shocked that they actually helped! I mean, I don't mean to sound like a pessimist, but I thought this would be just another thing to check off the list of things we've tried. In the few days/weeks after the injections, I began to feel slightly better each day. The constant pain in my head/neck actually lessened a bit, but the biggest difference was in my energy/stamina/tiredness levels. If you're around a lot, you know how bad I get after an hour or two of doing *anything*. But with these shots, I was able to keep going all day without feeling like I needed someone to shoot me. And the best benefit: I cut my pain med doses down by a third! That is huge, people. Huge.
Anyway, the last 2-3 weeks have been terrible again--the shots have worn off now. :( Back to normal doses of meds, back to banging myself against walls to try to relieve the pressure pain, back to...everything. But my doctor said it's been a suffienct amount of time and he's going to re-do the shots this Wednesday morning at 8am. Awesome. So I'm looking forward to better days next week!
Shelley and I are trying to convince Mom and Dad to get us a second piano. Every big, musical family has more than one piano, right?? Maybe not, but that doesn't matter. We have these awesome 4 hands/2 piano duet books that are sitting on our music shelves, collecting massive amounts of dust. And we love to write/arrange duets ourselves, but we can't do it on one piano! One of our favorite things to do is to match up classical pieces with hymns or praise songs with the same chord structures. Then we arrange them so that we can play them at the same time, on 2 pianos. Think of all the fun we could have if we just had....one more piano. Mom said that to do that, we'd have get rid of the couch in the green living room. Y'all don't mind sitting on the floor when you come over, do you? Didn't think so. ;)
Well, here's to a great 90degree summer! Smile!
5/24/09
4/12/09
5th verse drama
You know how there are only 2 real Easter hymns, right? What's the most popular Easter hymn in the US? "Christ the Lord is Risen Today" I have played this on Easter Sunday for, I think, 5 years in a row now. You would think that a church pianist would have enough of a brain to remember how to play it, right? Yeah....right.
The hymnal that we use in our church has tons of hymns where there are too many verses to fit on one page, so they put the first 4-6 inside the score on one page, and then the last verse(s) are put annoyingly on the next page w/out music. Believe me, when you're playing piano, or any instrument, it's annoying. I am the QUEEN of forgetting the last verse and ending after the 4th verse with a great big embarrassing AMEN on the piano while the congregation is busy singing the 5th verse. Oh my goodness...how many times have I done that?? Too many.
Ok, so that was useless information. In our hymnal, "Christ the Lord is Risen Today" has 5 verses, 4 of which are inside the score and the last is on the next page. The first Easter our church celebrated, I was playing this hymn and skipped the last verse. I had no idea the last verse was elsewhere and didn't know what in the world everyone was singing...were they making it up? Ok, well, stupid me, I'll write a great big star there on the page so next year I'll remember.
2nd Easter: I make the "last" verse really big and octavey, slow down on the last line and there we go, it's done. Wait, they're still singing. Dang it. Where am I? Where am I? Ok, I come back in halfway through the verse and at the end, I look around to see if anyone's staring at me. Great, only my sisters. I take a different colored pen than last time and draw 3 big, huge, arrows from the main page to the next verse. Surely next year I will get a grip and see that.
3rd Easter: Same thing, different year. Only this time, when everybody starts singing the 5th verse and I'm lost again, I start freaking out in my mind going, "Great, 3rd year in a row, I'm an idiot. Now what do I do? Do I start playing and look like a moron or do I let them keep singing a capella and let them think this was planned? Oh, I don't know!" Ok, I start playing anyway. So embarrassing. I take another pen and draw colorful circles and stars around the 5th verse. My hymnal is starting to look ridiculous.
4th Easter (last year): Of course, in keeping with tradition, I forget the last verse. What was I thinking? This time though, I don't start playing again. I let them end it a capella and hope no one notices. Yeah, whatever. My sisters are glaring at me because they remember. I take a sharpie and write 5TH VERSE NEXT PAGE!!!!!!!!!!!!!!!
5th Easter (Today): 5th time's a charm, right? Ok, this time, things were going to be different. No longer is it just me playing piano all by my lonesome, but I have a cute little "ensemble" backing me up now. At practice last week, we were going through the Sunday lineup and we really wanted to get everything perfect because it was Easter. Before we practiced this hymn, I turned around on the bench and explained to everyone my plight (or curse) from the years before. I beseeched them, in the name of God, not to forget the last verse. I showed them my hymnal with all the ridiculous colorful markings and told them to do what they had to do to make sure we played that verse. We practiced it perfectly, all 5 verses sounded beautiful and we were ready to go. At church this morning, 2 hours before service started, we did it again...gorgeous. I was feelin' good. Ok, the moment of truth...first hymn of the service, here we go.... 4 verses down, none to go..... oh man. There they go, singing the 5th verse without me. And did the viola or the violin or the guitar or the keyboard or the flute forget to play? Nope. Just me. Where did I come from???
I don't know what's wrong with me. My hymnal is so marked up on that page that you can barely tell what hymn it is. But do I see the colorful decorations? No I don't. I just see music with those 4 stinkin' verses.
Maybe next year I'll hire out a pianist to play just that hymn for me.
Excuse me, would you like to play 5 verses of Christ the Lord is Risen Today on Easter Sunday at a church you've never been to before? You're hired.
The hymnal that we use in our church has tons of hymns where there are too many verses to fit on one page, so they put the first 4-6 inside the score on one page, and then the last verse(s) are put annoyingly on the next page w/out music. Believe me, when you're playing piano, or any instrument, it's annoying. I am the QUEEN of forgetting the last verse and ending after the 4th verse with a great big embarrassing AMEN on the piano while the congregation is busy singing the 5th verse. Oh my goodness...how many times have I done that?? Too many.
Ok, so that was useless information. In our hymnal, "Christ the Lord is Risen Today" has 5 verses, 4 of which are inside the score and the last is on the next page. The first Easter our church celebrated, I was playing this hymn and skipped the last verse. I had no idea the last verse was elsewhere and didn't know what in the world everyone was singing...were they making it up? Ok, well, stupid me, I'll write a great big star there on the page so next year I'll remember.
2nd Easter: I make the "last" verse really big and octavey, slow down on the last line and there we go, it's done. Wait, they're still singing. Dang it. Where am I? Where am I? Ok, I come back in halfway through the verse and at the end, I look around to see if anyone's staring at me. Great, only my sisters. I take a different colored pen than last time and draw 3 big, huge, arrows from the main page to the next verse. Surely next year I will get a grip and see that.
3rd Easter: Same thing, different year. Only this time, when everybody starts singing the 5th verse and I'm lost again, I start freaking out in my mind going, "Great, 3rd year in a row, I'm an idiot. Now what do I do? Do I start playing and look like a moron or do I let them keep singing a capella and let them think this was planned? Oh, I don't know!" Ok, I start playing anyway. So embarrassing. I take another pen and draw colorful circles and stars around the 5th verse. My hymnal is starting to look ridiculous.
4th Easter (last year): Of course, in keeping with tradition, I forget the last verse. What was I thinking? This time though, I don't start playing again. I let them end it a capella and hope no one notices. Yeah, whatever. My sisters are glaring at me because they remember. I take a sharpie and write 5TH VERSE NEXT PAGE!!!!!!!!!!!!!!!
5th Easter (Today): 5th time's a charm, right? Ok, this time, things were going to be different. No longer is it just me playing piano all by my lonesome, but I have a cute little "ensemble" backing me up now. At practice last week, we were going through the Sunday lineup and we really wanted to get everything perfect because it was Easter. Before we practiced this hymn, I turned around on the bench and explained to everyone my plight (or curse) from the years before. I beseeched them, in the name of God, not to forget the last verse. I showed them my hymnal with all the ridiculous colorful markings and told them to do what they had to do to make sure we played that verse. We practiced it perfectly, all 5 verses sounded beautiful and we were ready to go. At church this morning, 2 hours before service started, we did it again...gorgeous. I was feelin' good. Ok, the moment of truth...first hymn of the service, here we go.... 4 verses down, none to go..... oh man. There they go, singing the 5th verse without me. And did the viola or the violin or the guitar or the keyboard or the flute forget to play? Nope. Just me. Where did I come from???
I don't know what's wrong with me. My hymnal is so marked up on that page that you can barely tell what hymn it is. But do I see the colorful decorations? No I don't. I just see music with those 4 stinkin' verses.
Maybe next year I'll hire out a pianist to play just that hymn for me.
Excuse me, would you like to play 5 verses of Christ the Lord is Risen Today on Easter Sunday at a church you've never been to before? You're hired.
3/26/09
no barking
Time to blog, time to blog.
I'm trying not to feel guilty about never blogging. It will help me blog more often if I feel less guilty. Maybe I'll try that...tomorrow.
Our semester is more than halfway over. That is so nice to think about. I do not like being school because someone is forcing me. Especially this semester, I don't want to be there, I don't care about my classes, I see it as the last thing I should be spending my time on right now. But because the government is making me do it and because we've already payed for it, I go. And I can't wait till it's over...
I've been to lots of appointments at the hospital in the last month. A few with pain management/anesthesia and a few with neurology. I love finally having doctors that work together instead of acting like they're the only physician in the world.
My neurologist got a hold of the films from the upright MRI I had done. There actually was some millimeter differences between that one and the old MRIs. This is good because he was able to see that my brain actually is dropping when gravity hits it (hence more pain when I'm sitting or standing). So that's the good news.
The bad news is that I'm still not a candidate for surgery. He said that most people with the same symptoms/pain that I have will lie in bed for months or years, waiting for this brain surgery. The surgeons have no problem slicing their skulls open because they are probably giving them a new lease on life. My docs said that although they've never seen someone with the mental toughness I have to be able to fight the pain and pretend like I'm normal, it's actually backfired because now I have a lot to lose. They won't even think about wheeling me into an OR because they think the risks outweigh the possible benefits at this point.
That was disappointing. But I trust that they know the surgery and its limitations better than I do, so I let myself be upset for about 10 minutes, then I forced myself to get over it. I asked them, "So I'm not a candidate for surgery...what AM I a candidate for?"
Answer: Symptomatic control. Great. Isn't that what we've been doing? Pretty much. They said we could try some nerve blocks at the base of my skull. They may or may not work, but we might as well try.
So last week my sweet friend Emily took me to the hospital and helped me get some nerves blocked. It was a fairly quick procedure...just about 8 shots to the back of my head. He shot some cocktail of lidocaine, steroids, and pain killers into my head to numb up the nerves that may or may not be aggravating the pain. He said that it might take up to 3 weeks to notice a difference and that if it helped, the shots could last up to 6 months. Well, 3 days later, I could already tell a difference in the amount of pain I was having. For a few days after that, the pain level decreased every day. Now it's kind of leveled out, but over all, I think the pain has been decreased by about 40%. :) That is good news, people.
Other goings on: We're 6 days away from officially starting the next kids musical at our church. The girls and I have been working on it for several weeks now, but we'll start rehearsals with the kids next Wednesday. So far we've gotten a lot of the hard work out of the way. We've picked the musical, rewritten the script to make it work for our church, written out about 100 lists, and oh, we did a final head count of the kids we'll have. We have 57 kids ages 4-15 signed up to be a part of this. If you know how big (or small) our little church is, you should be laughing by now. The last two musicals we did, we had a total of 26 kids, I think. I freaked out a little in my head when I saw that number 57. I told my 2 organizationally-challenged younger sisters that we are going to have to be very organized about this. I think they freaked out a little in their heads when I said the word "organized".
To help ourselves think that we're keeping a good handle on all the kids, we made a big, colorful poster of the Musical Rules. Here's a few of the rules Beth and Shelley came up with:
Obey your directors (and helpers too)!
Say your lines loud and clear!
Sing--don't yell!
Always face your audience!
Be quiet off stage!
Don't make CJ call your parents!
No barking!
Do your best!
Well, I have towels to fold and a thunderstorm to watch, so I'll leave it at that. Until next month... :)
I'm trying not to feel guilty about never blogging. It will help me blog more often if I feel less guilty. Maybe I'll try that...tomorrow.
Our semester is more than halfway over. That is so nice to think about. I do not like being school because someone is forcing me. Especially this semester, I don't want to be there, I don't care about my classes, I see it as the last thing I should be spending my time on right now. But because the government is making me do it and because we've already payed for it, I go. And I can't wait till it's over...
I've been to lots of appointments at the hospital in the last month. A few with pain management/anesthesia and a few with neurology. I love finally having doctors that work together instead of acting like they're the only physician in the world.
My neurologist got a hold of the films from the upright MRI I had done. There actually was some millimeter differences between that one and the old MRIs. This is good because he was able to see that my brain actually is dropping when gravity hits it (hence more pain when I'm sitting or standing). So that's the good news.
The bad news is that I'm still not a candidate for surgery. He said that most people with the same symptoms/pain that I have will lie in bed for months or years, waiting for this brain surgery. The surgeons have no problem slicing their skulls open because they are probably giving them a new lease on life. My docs said that although they've never seen someone with the mental toughness I have to be able to fight the pain and pretend like I'm normal, it's actually backfired because now I have a lot to lose. They won't even think about wheeling me into an OR because they think the risks outweigh the possible benefits at this point.
That was disappointing. But I trust that they know the surgery and its limitations better than I do, so I let myself be upset for about 10 minutes, then I forced myself to get over it. I asked them, "So I'm not a candidate for surgery...what AM I a candidate for?"
Answer: Symptomatic control. Great. Isn't that what we've been doing? Pretty much. They said we could try some nerve blocks at the base of my skull. They may or may not work, but we might as well try.
So last week my sweet friend Emily took me to the hospital and helped me get some nerves blocked. It was a fairly quick procedure...just about 8 shots to the back of my head. He shot some cocktail of lidocaine, steroids, and pain killers into my head to numb up the nerves that may or may not be aggravating the pain. He said that it might take up to 3 weeks to notice a difference and that if it helped, the shots could last up to 6 months. Well, 3 days later, I could already tell a difference in the amount of pain I was having. For a few days after that, the pain level decreased every day. Now it's kind of leveled out, but over all, I think the pain has been decreased by about 40%. :) That is good news, people.
Other goings on: We're 6 days away from officially starting the next kids musical at our church. The girls and I have been working on it for several weeks now, but we'll start rehearsals with the kids next Wednesday. So far we've gotten a lot of the hard work out of the way. We've picked the musical, rewritten the script to make it work for our church, written out about 100 lists, and oh, we did a final head count of the kids we'll have. We have 57 kids ages 4-15 signed up to be a part of this. If you know how big (or small) our little church is, you should be laughing by now. The last two musicals we did, we had a total of 26 kids, I think. I freaked out a little in my head when I saw that number 57. I told my 2 organizationally-challenged younger sisters that we are going to have to be very organized about this. I think they freaked out a little in their heads when I said the word "organized".
To help ourselves think that we're keeping a good handle on all the kids, we made a big, colorful poster of the Musical Rules. Here's a few of the rules Beth and Shelley came up with:
Obey your directors (and helpers too)!
Say your lines loud and clear!
Sing--don't yell!
Always face your audience!
Be quiet off stage!
Don't make CJ call your parents!
No barking!
Do your best!
Well, I have towels to fold and a thunderstorm to watch, so I'll leave it at that. Until next month... :)
2/2/09
catch up
I'm so sorry for the lack of posts. It definitely does not mean that nothing interesting has happened around here... it just means that too MUCH has happened and that doesn't leave me much time to blog. To catch you up, here are a few things that have happened/are happening:
>One of our fish jumped out of the tank in beth's and my room and died on our carpet. We found him later, dry and gross (all 9 inches of him) lying beside the tank and looking very...dead. We didn't want to touch him, so Dad threw him in the burn pit in the backyard (where all the dead mice are...he'll be in good company).
>I got my first traffic ticket...for having my headlights too bright. But this is the ridiculous part: When the guy pulled me over, he told me that it was because I had my brights on. I told him that I turned them off as soon as I saw his headlights coming toward me. (You know, like you're supposed to do when a car is coming toward you.) He said, "Yeah, you turned them off alright...when you saw that I was a cop!" How in the world can you tell if two bright headlights coming your way is a cop or not?? It's ridiculous. So I got a ticket even though I did the right thing.
>The girls and I started school about 3 weeks ago. This is the first semester that I've actually liked all of my professors. Hopefully that will make the semester fly by!
>The Slaughters are moving back to SA in 13 days! They have a house ready for them here, Dave has a job ready for him the day after they get here, and there's a city full of people waiting for them to drive in. This will make 8 out of 9 Warren kids living in SA, so now we're trying to figure out a way to get Caleb and Annie down here!
>We're in the newborn stages of planning another kids' musical for our church. I've directed 2 so far, and now we're beginning a 3rd. The first part is usually the hardest: Picking a musical, figuring out how to make it work with the amount of kids we have, lining up who will help us make it happen and assigning jobs, ordering the script and doing the necessary re-writes, choreographing the songs, and then casting the musical. After that it's just rehearsals, rehearsals, rehearsals, and those aren't so hard. Our goal is to get these preliminary things finished within 4 weeks so we can hopefully start rehearsals in 6 weeks. And that should keep us busy for a while!
>I had my vertical MRI a few days ago. The test went really well...I just sat there and watched TV while they scanned me and it was over within about 2 hours. They printed the films for me to take home and I left with about 150 images of my brain. I looked at them when I got home and there were only about 10 pictures where I could see anything significant. On those 10 pictures, you can definitely tell that my brain is a lot lower than it should be and you can see the very bottom of my brain looking very squashed. My doctor hasn't seen the films yet... I'm supposed to take them in to him in a couple of weeks. He'll decide from there what he wants to do and I'll let you know what that is when I know.
I do have excellent intentions about blogging every day but life really gets in my way. Hopefully I'll make it back here before another 2 months go by... :)
>One of our fish jumped out of the tank in beth's and my room and died on our carpet. We found him later, dry and gross (all 9 inches of him) lying beside the tank and looking very...dead. We didn't want to touch him, so Dad threw him in the burn pit in the backyard (where all the dead mice are...he'll be in good company).
>I got my first traffic ticket...for having my headlights too bright. But this is the ridiculous part: When the guy pulled me over, he told me that it was because I had my brights on. I told him that I turned them off as soon as I saw his headlights coming toward me. (You know, like you're supposed to do when a car is coming toward you.) He said, "Yeah, you turned them off alright...when you saw that I was a cop!" How in the world can you tell if two bright headlights coming your way is a cop or not?? It's ridiculous. So I got a ticket even though I did the right thing.
>The girls and I started school about 3 weeks ago. This is the first semester that I've actually liked all of my professors. Hopefully that will make the semester fly by!
>The Slaughters are moving back to SA in 13 days! They have a house ready for them here, Dave has a job ready for him the day after they get here, and there's a city full of people waiting for them to drive in. This will make 8 out of 9 Warren kids living in SA, so now we're trying to figure out a way to get Caleb and Annie down here!
>We're in the newborn stages of planning another kids' musical for our church. I've directed 2 so far, and now we're beginning a 3rd. The first part is usually the hardest: Picking a musical, figuring out how to make it work with the amount of kids we have, lining up who will help us make it happen and assigning jobs, ordering the script and doing the necessary re-writes, choreographing the songs, and then casting the musical. After that it's just rehearsals, rehearsals, rehearsals, and those aren't so hard. Our goal is to get these preliminary things finished within 4 weeks so we can hopefully start rehearsals in 6 weeks. And that should keep us busy for a while!
>I had my vertical MRI a few days ago. The test went really well...I just sat there and watched TV while they scanned me and it was over within about 2 hours. They printed the films for me to take home and I left with about 150 images of my brain. I looked at them when I got home and there were only about 10 pictures where I could see anything significant. On those 10 pictures, you can definitely tell that my brain is a lot lower than it should be and you can see the very bottom of my brain looking very squashed. My doctor hasn't seen the films yet... I'm supposed to take them in to him in a couple of weeks. He'll decide from there what he wants to do and I'll let you know what that is when I know.
I do have excellent intentions about blogging every day but life really gets in my way. Hopefully I'll make it back here before another 2 months go by... :)
12/1/08
still
Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.
11/12/08
good news
The vertical MRI has been approved by Tricare! I just found out last night and I can't even tell you how excited I was. My doctors and I have been trying to get this for over 3 years and there's no telling what my super cool neurologist had to do to make this happen. Maybe I don't want to know... But anyway, we're all really happy and can't wait to see the results of this test. (I know, only a really big nerd like me would get excited about an MRI...you can laugh if you want.) So, praise the Lord with us and pray for a really good test. They say that I will get in before this month is over. :)
"hold onto your hope--it is a soul anchor!"
"hold onto your hope--it is a soul anchor!"
11/7/08
mice
Yes, I'm updating. :)
Mom and Dad have been in Hawaii for the better part of 2 weeks now and I have to say, we've handled ourselves quite nicely. Before they left, we overheard our friend Stephanie talking to someone else and saying that we probably wouldn't eat anything except Tuna Helper while our parents were gone because we would never really cook. So I, fueled by those words, have made dinner every single night, and none of it has come from a box. I even have pictures of our food somewhere, just so Steph will believe me. So we've been eating well, the girls and I haven't missed a day of school, the kids have been taken to all of their co-ops and activities and jobs on time, and because I'm a freak, we have kept the house clean. :)
We have been running around like crazy without our parents here and I feel like I've been in the car all week so I was really looking forward to going to bed tonight. As I was walking upstairs to go to bed, the boys and Jonathan (who is spending the night) yelled to me that they found a mouse in the closet by my room. We don't have traps and all our cats are dead. Great. Beth and I have sworn off sleeping for the night because, really, would you be able to sleep knowing a live mouse was running around and probably having tons of mouse babies in your closet? And what if the mouse's brother is living under my bed? Seriously, these are valid reasons not to sleep. So we're planning on staying downstairs until Dirk can come over tomorrow and neutralize the threat, if you know what I mean. You've heard us say that all bad things happen when Dad is gone....it's true.
I've had another neurology appointment and an MRI since I last blogged. So I got to see my MRI pictures at the appointment and, even when you have a messed up brain, I can't lie, it is very cool to see it on a computer and move it around every which way. Anyway, my brain was considerably lower than it was in the last MRI, which might explain why the pain, as a whole, has become worse since last year. The bottom part of my brain looked a little squashed and swollen but the top half looked fine. My doctor sent in the referral for the vertical MRI last week and we should be hearing within 10 days if it's been approved or not. If it's approved, I'll be able to get in right away and we'll go from there. If that test shows a considerable difference from the regular MRI (meaning, if my brain is even lower when I stand up), I'll be handed off to neurosurgery and we'll go the Chiari route. If the pictures look the same, I'll go back through the nuclear tests and we'll go with the CSF leak route. Lots of "ifs" there, but that's where we are right now.
School is fine so far, except for all the super liberal professors. I'm in a new psych class and have some hilarious stories about my new prof, so I think I'll have to start a new psych-o series again. I'll be finished at this school by next semester (only 3 classes left!!) and then I'll try to work my way into clinicals. On my one spare day, I'm teaching 2 Latin classes to the kids in our homeschool group. Both classes are doing a whole lot better than I expected, and my younger class recited their first Latin prayer on Reformation day! I was so excited for them. The older class is really giving me a workout and I have to study and prepare way more than I thought I would. They say you learn the most when you have to teach, and that's certainly true for me. And despite my nephews calling me a "Latin Slavedriver" for daring to give them translation homework, I think everyone's having a good time.
Beth and I will now watch re-runs of The Office until we either crash on the couches or until it's time to "wake up" and get ready for co-op. I hope the mouse suffocates and dies in that closet! I know that's mean, but really, I do.
Mom and Dad have been in Hawaii for the better part of 2 weeks now and I have to say, we've handled ourselves quite nicely. Before they left, we overheard our friend Stephanie talking to someone else and saying that we probably wouldn't eat anything except Tuna Helper while our parents were gone because we would never really cook. So I, fueled by those words, have made dinner every single night, and none of it has come from a box. I even have pictures of our food somewhere, just so Steph will believe me. So we've been eating well, the girls and I haven't missed a day of school, the kids have been taken to all of their co-ops and activities and jobs on time, and because I'm a freak, we have kept the house clean. :)
We have been running around like crazy without our parents here and I feel like I've been in the car all week so I was really looking forward to going to bed tonight. As I was walking upstairs to go to bed, the boys and Jonathan (who is spending the night) yelled to me that they found a mouse in the closet by my room. We don't have traps and all our cats are dead. Great. Beth and I have sworn off sleeping for the night because, really, would you be able to sleep knowing a live mouse was running around and probably having tons of mouse babies in your closet? And what if the mouse's brother is living under my bed? Seriously, these are valid reasons not to sleep. So we're planning on staying downstairs until Dirk can come over tomorrow and neutralize the threat, if you know what I mean. You've heard us say that all bad things happen when Dad is gone....it's true.
I've had another neurology appointment and an MRI since I last blogged. So I got to see my MRI pictures at the appointment and, even when you have a messed up brain, I can't lie, it is very cool to see it on a computer and move it around every which way. Anyway, my brain was considerably lower than it was in the last MRI, which might explain why the pain, as a whole, has become worse since last year. The bottom part of my brain looked a little squashed and swollen but the top half looked fine. My doctor sent in the referral for the vertical MRI last week and we should be hearing within 10 days if it's been approved or not. If it's approved, I'll be able to get in right away and we'll go from there. If that test shows a considerable difference from the regular MRI (meaning, if my brain is even lower when I stand up), I'll be handed off to neurosurgery and we'll go the Chiari route. If the pictures look the same, I'll go back through the nuclear tests and we'll go with the CSF leak route. Lots of "ifs" there, but that's where we are right now.
School is fine so far, except for all the super liberal professors. I'm in a new psych class and have some hilarious stories about my new prof, so I think I'll have to start a new psych-o series again. I'll be finished at this school by next semester (only 3 classes left!!) and then I'll try to work my way into clinicals. On my one spare day, I'm teaching 2 Latin classes to the kids in our homeschool group. Both classes are doing a whole lot better than I expected, and my younger class recited their first Latin prayer on Reformation day! I was so excited for them. The older class is really giving me a workout and I have to study and prepare way more than I thought I would. They say you learn the most when you have to teach, and that's certainly true for me. And despite my nephews calling me a "Latin Slavedriver" for daring to give them translation homework, I think everyone's having a good time.
Beth and I will now watch re-runs of The Office until we either crash on the couches or until it's time to "wake up" and get ready for co-op. I hope the mouse suffocates and dies in that closet! I know that's mean, but really, I do.
10/15/08
anchor
Hey, sorry for the lack of updates, especially regarding doctor stuff. The VA sisters and kids are here right now and blogging is not on my to-do list. I will post more later, like, after they leave, but just wanted to let you know that the appointment went VERY well.
We liked the new neurologist a lot and are hopeful that he will start turning things around. He is very aware of the time crunch we're in (14 months till my insurance is gone and then who knows what will happen) and promised to work hard to make sure I'm not left hanging after Tricare drops me. While we were reading through 3 years worth of records (yes, he read *everything*, and that's a lot!), he was not pleased at ALL with the way my case has been handled. After reviewing the results of every single test I've ever had, he decided that he wants to re-do most of them. Because the previous doctors did not follow normal procedure concerning most of the tests, the results are either really screwed up, or not consistent with each other. So...within the next 2 weeks I'm having 2 more 4-hour MRIs done, and a cisternogram (nuclear study). After those are finished I'll have a myelogram. I've had all of these before so it won't be a huge deal, but the myelogram is especially uncomfortable. I'm not looking forward to it at all, especially since they have to tap me again and we all know how my body handles spinal taps. But we know that this needs to be done so I'll get through it. :)
Another praise was that he IS going to get me into a vertical MRI. This is something we've been praying for for a long time, as it might give a conclusive answer about how my brain is shifting when gravity hits it. We still need Tricare to approve it, and it is extremely expensive and rare, so be praying that they OK the test.
He also changed around a few of my meds and put me on a new drug which I absolutely hate (hate the side effects). It's kind of just making a lot of my symptoms even worse like fatigue, weakness, really low blood pressure, balance and coordination, vision, etc. It has helped my extreme shakiness and numbness so that's a plus. No verdict on if it helps the pain yet, but that usually takes several weeks for me to notice a change either way. I'm halfway through this school semester and I'm already noticing a major meltdown. Pain has increased, and that makes every single other symptom worse. It's getting hard for me to concentrate, so pray that I'll be able to make it through the next 8 weeks!
I'm seeing my neurologist again in 2 weeks and I'm pretty sure I'm going to see my anesthesiologist around the same time. So, I'll do another health update after that. Until then, you can pray:
>that all of the next few tests are done with accuracy and precision.
>that the bad tests won't leave me in anymore pain than I'm already in.
>that Tricare agrees to pay for the vertical MRI and if not,
>that we will be able to raise enough money to pay for it ourselves.
>that I will be diligent in school even if I don't feel like it.
>for my new doctor and regular doctors to have wisdom to know how best to use the next 14 months.
>that my family and I will not worry about what will happen when I'm uninsured, but that we will completely trust the Lord's plan and timing.
Once again, thank you SO much for praying. I can't tell you how much it calms me down on days when I'm worried and afraid to know that so many people are praying for us.
"It's a Soul Anchor,
Hold onto that Hope,
It is a Soul Anchor!
Hold onto your courage
Before we call,
He answers us with Hope."
We liked the new neurologist a lot and are hopeful that he will start turning things around. He is very aware of the time crunch we're in (14 months till my insurance is gone and then who knows what will happen) and promised to work hard to make sure I'm not left hanging after Tricare drops me. While we were reading through 3 years worth of records (yes, he read *everything*, and that's a lot!), he was not pleased at ALL with the way my case has been handled. After reviewing the results of every single test I've ever had, he decided that he wants to re-do most of them. Because the previous doctors did not follow normal procedure concerning most of the tests, the results are either really screwed up, or not consistent with each other. So...within the next 2 weeks I'm having 2 more 4-hour MRIs done, and a cisternogram (nuclear study). After those are finished I'll have a myelogram. I've had all of these before so it won't be a huge deal, but the myelogram is especially uncomfortable. I'm not looking forward to it at all, especially since they have to tap me again and we all know how my body handles spinal taps. But we know that this needs to be done so I'll get through it. :)
Another praise was that he IS going to get me into a vertical MRI. This is something we've been praying for for a long time, as it might give a conclusive answer about how my brain is shifting when gravity hits it. We still need Tricare to approve it, and it is extremely expensive and rare, so be praying that they OK the test.
He also changed around a few of my meds and put me on a new drug which I absolutely hate (hate the side effects). It's kind of just making a lot of my symptoms even worse like fatigue, weakness, really low blood pressure, balance and coordination, vision, etc. It has helped my extreme shakiness and numbness so that's a plus. No verdict on if it helps the pain yet, but that usually takes several weeks for me to notice a change either way. I'm halfway through this school semester and I'm already noticing a major meltdown. Pain has increased, and that makes every single other symptom worse. It's getting hard for me to concentrate, so pray that I'll be able to make it through the next 8 weeks!
I'm seeing my neurologist again in 2 weeks and I'm pretty sure I'm going to see my anesthesiologist around the same time. So, I'll do another health update after that. Until then, you can pray:
>that all of the next few tests are done with accuracy and precision.
>that the bad tests won't leave me in anymore pain than I'm already in.
>that Tricare agrees to pay for the vertical MRI and if not,
>that we will be able to raise enough money to pay for it ourselves.
>that I will be diligent in school even if I don't feel like it.
>for my new doctor and regular doctors to have wisdom to know how best to use the next 14 months.
>that my family and I will not worry about what will happen when I'm uninsured, but that we will completely trust the Lord's plan and timing.
Once again, thank you SO much for praying. I can't tell you how much it calms me down on days when I'm worried and afraid to know that so many people are praying for us.
"It's a Soul Anchor,
Hold onto that Hope,
It is a Soul Anchor!
Hold onto your courage
Before we call,
He answers us with Hope."
10/2/08
new doc
Good news! I finally have an appointment with my new neurologist! My appointment is tomorrow (Friday) at 9am. I am very happy because this doctor comes highly recommended from several friends and all of my current doctors. He's a Christian and every other doctor that I've talked to says that he is the best neurologist in the hospital.
Right now I'm trying to gather a pile of records and test results and anything that might be useful for him to see. To everyone who is coming over for FabFri (co-op) tomorrow, I'm sorry if the house is not AS clean as I usually have it but, it's for a good cause. :)
I don't have alot of time to write right now but I just wanted to let everyone know that I'll be meeting the new doc tomorrow morning and to ask everyone to pray that it's a good appointment.
We are praying that
He really is as good as everyone says he is.
He will listen carefully as Mom and I try to spit out 3 years worth of medical history.
He will be the doctor who knows just what to do, or
That he will be the doctor who will finally send me somewhere else.
He will work closely with all of my other doctors in the hospital to make sure everyone is on the same page.
He will not send me to the psych ward like certain other doctors. :)
And that it will be a very productive meeting.
Thanks for praying! I'll let you know how it goes.
Right now I'm trying to gather a pile of records and test results and anything that might be useful for him to see. To everyone who is coming over for FabFri (co-op) tomorrow, I'm sorry if the house is not AS clean as I usually have it but, it's for a good cause. :)
I don't have alot of time to write right now but I just wanted to let everyone know that I'll be meeting the new doc tomorrow morning and to ask everyone to pray that it's a good appointment.
We are praying that
He really is as good as everyone says he is.
He will listen carefully as Mom and I try to spit out 3 years worth of medical history.
He will be the doctor who knows just what to do, or
That he will be the doctor who will finally send me somewhere else.
He will work closely with all of my other doctors in the hospital to make sure everyone is on the same page.
He will not send me to the psych ward like certain other doctors. :)
And that it will be a very productive meeting.
Thanks for praying! I'll let you know how it goes.
9/27/08
I'm back, for now
I've been getting some pretty angry emails about my lack of posting. Every time I read one, I feel bad for not posting, but usually not bad enough to actually post something. So now people have actually started emailing my mother and complaining that she's raised an unreliable blogger. (thanks, Amy! :)
I have many, many faithful readers, even when there's absolutely nothing to read, and I'm sorry for not updating faithfully. As always, there's a whole lot going on around here, as I suspect there always will be.
School started last month and, so far, it's going alright. I was able to get all of my classes in a flex schedule this semester so I'm doing half of my classes for the first 8 weeks and then the other half for the last 8 weeks. Even though each class goes alot faster than normal, I like having only half the homework at a time.
In case you think I'm lying about being really busy, here's my schedule.
M) 8a-5p--school
T) 9a-11a--school; 11a-whenever--rotating homes of families in our church/homeschool group to help them with school, cleaning, organizing, scheduling, life, whatever makes their lives easier
W) 8a-5p--school; 6p-9p--Bible study
R) 9a-11a--school; 12p-whenever--cleaning the house and baking for Friday
F) 7a-12p--clean and bake; 12p-4p--HOPE co-op at our house, I'm teaching 2 Latin classes during this time.
There is no scheduled blogging time, which bothers some people. It really doesn't bother me until I realize that I haven't blogged in a while, and then I feel all this guilt. Ok, not really. But it's a nice thought anyway.
Oh look, today is September 27th. 3 years since I went into the hospital for the first time. That was the first day that anyone besides Mom and me knew anything was wrong with me. Hm...3 years. Don't really know what to say except...well, 3 years. I was looking through my old blog that I kept while I was in the hopsital and during the subsequent months and found these 2 posts from Sept 27, 2005...THE day. This is pretty funny...
"so i'm not in my 8oclock class. i woke up this morning, and thought very carefully about standing up. i had to make sure it was worth the risk of blacking out right away. happy for me, i made it all the way to the school parking lot before blacking out. it lasted for what seemed like a good 3 or 4 minutes, but i really have no idea. after that i couldn't walk so i sat in my car for a few minutes and listened as kassie tried to call my phone to find out where the heck i was and why i was making her sit in class alone. i couldn't answer my phone because i couldn't really hear anything...it was like i was in a big bubble and all sounds were muffled. so when i was finally able to stand up i walked long enough to get to the college commons, where i sit now. the good news is, i've never had more than one blackout in one day. maybe God just thought i should go ahead and get it over with so i wouldn't worry about it all day. that's nice of Him. so now i just deal with the massive headache it leaves."
3 hours later...
"bossy aubrey is forcing me to go to the emergency room. bossy mom agreed with her. bossy dad came home from work to take me to the er. i'm leaving with the bossy people now. why can't they stay out of things? my life will most likely be ruined because of what they're making me do right now. you heard it here first."
I've been reading through alot of those entries from that week and it's so weird to read what I wrote just a few days before all of this happened...before "being sick" was a normal part of my life. I mean, I was already having problems as you can see from the above post, but I didn't know that anything was seriously wrong with me. It's just eerie to read what was going on in those days before the ER trip and how I had no idea that in 2 days, my life and my family's life were going to be turned upside down.
It's also interesting to read the progression how I "dealt" with all of this. First it was this huge, dramatic, emotional, the world is over kind of tone. Then I was angry, went through a very depressed stage, and then decided to give up on being angry and accept that this is where God has me. I'm really glad I blogged through all of that. Most of what I wrote, I do not remember at all. Probably because of drugs and pain. But it's good to go back, especially on days like today when I feel like I haven't made any progress at all, and see exactly what I was thinking and feeling back then.
I know that I have a ton of new readers on my blog and we've been meeting alot of new people that have been asking lots of questions and want to know the full story about what happened and what is happening now. I really avoid telling the story because a) I don't remember a whole lot, b) those days are still hard to talk about, and c) living with this disease is so normal for me now that it's hard to talk about it without dismissing the whole thing as boring and unimportant. Anyway, I'm re-writing the story with the help of the people that were going through it with me, and I'll post it soon for everyone who is confused as to what's going on.
Look for more posts soon, I promise! :)
I have many, many faithful readers, even when there's absolutely nothing to read, and I'm sorry for not updating faithfully. As always, there's a whole lot going on around here, as I suspect there always will be.
School started last month and, so far, it's going alright. I was able to get all of my classes in a flex schedule this semester so I'm doing half of my classes for the first 8 weeks and then the other half for the last 8 weeks. Even though each class goes alot faster than normal, I like having only half the homework at a time.
In case you think I'm lying about being really busy, here's my schedule.
M) 8a-5p--school
T) 9a-11a--school; 11a-whenever--rotating homes of families in our church/homeschool group to help them with school, cleaning, organizing, scheduling, life, whatever makes their lives easier
W) 8a-5p--school; 6p-9p--Bible study
R) 9a-11a--school; 12p-whenever--cleaning the house and baking for Friday
F) 7a-12p--clean and bake; 12p-4p--HOPE co-op at our house, I'm teaching 2 Latin classes during this time.
There is no scheduled blogging time, which bothers some people. It really doesn't bother me until I realize that I haven't blogged in a while, and then I feel all this guilt. Ok, not really. But it's a nice thought anyway.
Oh look, today is September 27th. 3 years since I went into the hospital for the first time. That was the first day that anyone besides Mom and me knew anything was wrong with me. Hm...3 years. Don't really know what to say except...well, 3 years. I was looking through my old blog that I kept while I was in the hopsital and during the subsequent months and found these 2 posts from Sept 27, 2005...THE day. This is pretty funny...
"so i'm not in my 8oclock class. i woke up this morning, and thought very carefully about standing up. i had to make sure it was worth the risk of blacking out right away. happy for me, i made it all the way to the school parking lot before blacking out. it lasted for what seemed like a good 3 or 4 minutes, but i really have no idea. after that i couldn't walk so i sat in my car for a few minutes and listened as kassie tried to call my phone to find out where the heck i was and why i was making her sit in class alone. i couldn't answer my phone because i couldn't really hear anything...it was like i was in a big bubble and all sounds were muffled. so when i was finally able to stand up i walked long enough to get to the college commons, where i sit now. the good news is, i've never had more than one blackout in one day. maybe God just thought i should go ahead and get it over with so i wouldn't worry about it all day. that's nice of Him. so now i just deal with the massive headache it leaves."
3 hours later...
"bossy aubrey is forcing me to go to the emergency room. bossy mom agreed with her. bossy dad came home from work to take me to the er. i'm leaving with the bossy people now. why can't they stay out of things? my life will most likely be ruined because of what they're making me do right now. you heard it here first."
I've been reading through alot of those entries from that week and it's so weird to read what I wrote just a few days before all of this happened...before "being sick" was a normal part of my life. I mean, I was already having problems as you can see from the above post, but I didn't know that anything was seriously wrong with me. It's just eerie to read what was going on in those days before the ER trip and how I had no idea that in 2 days, my life and my family's life were going to be turned upside down.
It's also interesting to read the progression how I "dealt" with all of this. First it was this huge, dramatic, emotional, the world is over kind of tone. Then I was angry, went through a very depressed stage, and then decided to give up on being angry and accept that this is where God has me. I'm really glad I blogged through all of that. Most of what I wrote, I do not remember at all. Probably because of drugs and pain. But it's good to go back, especially on days like today when I feel like I haven't made any progress at all, and see exactly what I was thinking and feeling back then.
I know that I have a ton of new readers on my blog and we've been meeting alot of new people that have been asking lots of questions and want to know the full story about what happened and what is happening now. I really avoid telling the story because a) I don't remember a whole lot, b) those days are still hard to talk about, and c) living with this disease is so normal for me now that it's hard to talk about it without dismissing the whole thing as boring and unimportant. Anyway, I'm re-writing the story with the help of the people that were going through it with me, and I'll post it soon for everyone who is confused as to what's going on.
Look for more posts soon, I promise! :)
9/11/08
shooting
Last weekend, Beth and I drove up to west TX to visit the Cottles. We love going up there...it's so quiet and there are no people or traffic around and we were able to live the ranch life for a few days. I tried to put Lora into labor while we were there by making her run around and lift things but sadly, no baby showed up. So we spent our time making a month's worth of freezer meals for after the baby is born, organizing baby stuff, and shooting guns with Jeremiah. That's the life...
Beth is posing with our targets. Mine is the one on the right which is, by far, the better one. :)
Beth is posing with our targets. Mine is the one on the right which is, by far, the better one. :)
8/5/08
verge of a miracle
I'm in Virginia! Aahhh...it's so nice, especially after such a busy summer!
A few days ago, I made an uncharacteristically last minute decision to fly up here and spend a week with my sisters before we head to Tennessee for Family Play Time (vacation). Dad was so sweet to get me a ticket (first class, no less!), but I think he knew it would free up a seat in the suburban for the long drive to TN. ;) I flew in to DC last night and will just stay here at both houses until they all drive down to TN next week. We're already having major fun up here. Dave and Kristen went out for a much needed date tonight, so before they left I took the 5 oldest kids to the store and let them pick out any treats they wanted. When D&K left, we watched a movie together and ate cookies, candy, and root beer floats! I'm pretty sure I'm the favorite aunt right now.
A couple of days before I left, good news came to us in the form of an email. A friend of ours who we've known for several years, just moved down to SA with his family. He's a doctor and is now stationed at Wilford Hall, which is my hospital. My dad and I were talking to him about a week ago and he asked us for any updates on my medical stuff and who my doctors were. I told him that we were definitely at a standstill because my neurologist won't listen to me or to my other doctors, and that he was not interested in trying to get me some real help. Our friend told us that he knew an amazing neurologist at Wilford Hall and that he would talk to him to see if he could help.
Long story short, our friend was able to meet with the neurologist and he agreed to take me on as a patient and and take over all my neurology care. This means that I never have to see my other neurologist again! This new doctor is a Christian and everyone I've talked to has had only good things to say about him. I am so excited... By now I know better than to get my hopes up about stuff like this, but I am just so relieved not to have to deal with my old doctor anymore. I was so frustrated with him and it made me give up on trying to get better. I have never blamed him for not knowing what to do, I only blame him for not trying.
I've never been one to put unrealistic expectations on my doctors. I know alot of people do because for some reason, the general public seems to think that doctors are superheros. There is no room for uncertainty or error or ignorance anymore in hospitals, and that really makes me sad. They're people, just like the rest of us, and they have a really hard job. I try to keep that in mind when I'm with them because I'm sometimes tempted to get angry with them when they can't tell me what's wrong or when they know what's wrong and they tell me it's impossible to fix. That stuff is really frustrating and sometimes it's unbearably hard to hear. But I know they don't know everything and I know by now that I'm a pretty tough case. I completely understand when they tell that they can't do anything for me. BUT, I'm only ok with that after they've exhausted every test, procedure, and treatment they have available. I'm NOT ok with them saying, "get used to being sick" after one single drug fails to work, which is essentially what my old neurologist did.
Last month I hit the 3 year mark of being sick. In some ways, it feels like that day in July 2005 was just a few days ago, and in other ways I feel like I've lived an entire lifetime in these 3 very long years. In some ways, I feel stuck at 18 years old...like I've lost 3 whole years. In other ways I feel like I should be 40 years old right now because of what I've just walked through.
My gut tells me that there will be a day when I post on here and say, "I've just hit the 20 year mark...", but my heart tells me to hold on and still hope and pray for a day when this will all be a memory. I'm praying this new doctor will be just what I need to take the next step towards healing. I don't know if he'll be any wiser than the rest of my doctors who tell me I'll have to live like this forever, but I sure hope he thinks of something we haven't tried yet! And I hope that if he really has no clue and honestly can't figure this out, that he'll allow me to go out of network to a research hospital and let them take over (something my old doctor was adamantly against). Please pray with us that we will find some answers and that this new neurologist will be what God uses to bring this all to a close. And please pray for my all of my doctors as they try to work together...pray for wisdom and good teamwork! Thank you!!
A few days ago, I made an uncharacteristically last minute decision to fly up here and spend a week with my sisters before we head to Tennessee for Family Play Time (vacation). Dad was so sweet to get me a ticket (first class, no less!), but I think he knew it would free up a seat in the suburban for the long drive to TN. ;) I flew in to DC last night and will just stay here at both houses until they all drive down to TN next week. We're already having major fun up here. Dave and Kristen went out for a much needed date tonight, so before they left I took the 5 oldest kids to the store and let them pick out any treats they wanted. When D&K left, we watched a movie together and ate cookies, candy, and root beer floats! I'm pretty sure I'm the favorite aunt right now.
A couple of days before I left, good news came to us in the form of an email. A friend of ours who we've known for several years, just moved down to SA with his family. He's a doctor and is now stationed at Wilford Hall, which is my hospital. My dad and I were talking to him about a week ago and he asked us for any updates on my medical stuff and who my doctors were. I told him that we were definitely at a standstill because my neurologist won't listen to me or to my other doctors, and that he was not interested in trying to get me some real help. Our friend told us that he knew an amazing neurologist at Wilford Hall and that he would talk to him to see if he could help.
Long story short, our friend was able to meet with the neurologist and he agreed to take me on as a patient and and take over all my neurology care. This means that I never have to see my other neurologist again! This new doctor is a Christian and everyone I've talked to has had only good things to say about him. I am so excited... By now I know better than to get my hopes up about stuff like this, but I am just so relieved not to have to deal with my old doctor anymore. I was so frustrated with him and it made me give up on trying to get better. I have never blamed him for not knowing what to do, I only blame him for not trying.
I've never been one to put unrealistic expectations on my doctors. I know alot of people do because for some reason, the general public seems to think that doctors are superheros. There is no room for uncertainty or error or ignorance anymore in hospitals, and that really makes me sad. They're people, just like the rest of us, and they have a really hard job. I try to keep that in mind when I'm with them because I'm sometimes tempted to get angry with them when they can't tell me what's wrong or when they know what's wrong and they tell me it's impossible to fix. That stuff is really frustrating and sometimes it's unbearably hard to hear. But I know they don't know everything and I know by now that I'm a pretty tough case. I completely understand when they tell that they can't do anything for me. BUT, I'm only ok with that after they've exhausted every test, procedure, and treatment they have available. I'm NOT ok with them saying, "get used to being sick" after one single drug fails to work, which is essentially what my old neurologist did.
Last month I hit the 3 year mark of being sick. In some ways, it feels like that day in July 2005 was just a few days ago, and in other ways I feel like I've lived an entire lifetime in these 3 very long years. In some ways, I feel stuck at 18 years old...like I've lost 3 whole years. In other ways I feel like I should be 40 years old right now because of what I've just walked through.
My gut tells me that there will be a day when I post on here and say, "I've just hit the 20 year mark...", but my heart tells me to hold on and still hope and pray for a day when this will all be a memory. I'm praying this new doctor will be just what I need to take the next step towards healing. I don't know if he'll be any wiser than the rest of my doctors who tell me I'll have to live like this forever, but I sure hope he thinks of something we haven't tried yet! And I hope that if he really has no clue and honestly can't figure this out, that he'll allow me to go out of network to a research hospital and let them take over (something my old doctor was adamantly against). Please pray with us that we will find some answers and that this new neurologist will be what God uses to bring this all to a close. And please pray for my all of my doctors as they try to work together...pray for wisdom and good teamwork! Thank you!!
7/29/08
Getting ready for the stage
The hours before performance....
Melanie works magic on Cody's face.
The handmade, handpainted set flats.
Charis and Montana, or, Melody and Harmony...makeuped, hair colored, and all microphoned up.
Alex and Malachi, ready for rehearsal... Such cuties!
Psalty and Psaltina, ready to go on stage.
Melanie works magic on Cody's face.
The handmade, handpainted set flats.
Charis and Montana, or, Melody and Harmony...makeuped, hair colored, and all microphoned up.
Alex and Malachi, ready for rehearsal... Such cuties!
Psalty and Psaltina, ready to go on stage.
7/28/08
People who made our lives easier
We couldn't have done this thing alone. There were dozens of people who did things that we couldn't do, or did them better than we could have. Here are some of those people...
Blair graced us with her presence during dress rehearsal, and volunteered to spend 13 hours with us on performance day. That's dedication. Emily was supposed to be our Project Manger, but we're not sure which project she's working on right now.
Cheyenne was my Assistant (I have an assistant!) and was with us for every rehearsal for 7 months and helped with pretty much all areas of the musical. Here she is, the day before performance, helping us finish up some projects.
Here's me and Melanie. Melanie also showed up for the 13 hour performance day and helped us with curtains, crowd control, moral support, and did the stage makeup for the cast.
Nathan was forced to show up. He helped us eat our tacos. Oh, and he set up all the wireless mics, helped with the sound system, ran errands, lifted heavy things, and harassed little children.
Dirk pretty much did everything for us. This was probably the only time he sat down during the 13 hour day.
Teresa is a genius and made all of the costume shells. Here she is, 8 hours before performance, doing some emergency work on the books.
There were other people we weren't able to get pictures of. That probably means they were working harder than the rest of us! Thanks to everyone who helped us bring Psalty to life!
Blair graced us with her presence during dress rehearsal, and volunteered to spend 13 hours with us on performance day. That's dedication. Emily was supposed to be our Project Manger, but we're not sure which project she's working on right now.
Cheyenne was my Assistant (I have an assistant!) and was with us for every rehearsal for 7 months and helped with pretty much all areas of the musical. Here she is, the day before performance, helping us finish up some projects. 
Here's me and Melanie. Melanie also showed up for the 13 hour performance day and helped us with curtains, crowd control, moral support, and did the stage makeup for the cast.
Nathan was forced to show up. He helped us eat our tacos. Oh, and he set up all the wireless mics, helped with the sound system, ran errands, lifted heavy things, and harassed little children.
Dirk pretty much did everything for us. This was probably the only time he sat down during the 13 hour day.
Teresa is a genius and made all of the costume shells. Here she is, 8 hours before performance, doing some emergency work on the books. 
There were other people we weren't able to get pictures of. That probably means they were working harder than the rest of us! Thanks to everyone who helped us bring Psalty to life!
Well, we pulled it off. The musical was a success, mostly because we got through it without killing any children. But also because we were able to finish the set flats, make 5 book costumes, hand-make 30 cards and flags, convince all the little boys that the stage makeup was for their own good, miraculously pull half of our kids out of their I-Will-Never-Sing-In-Front-Of-Anyone Shells, recruited no less than 20 teenagers and adults to help us with a 12 hour performance day, found enough caffeine in 3 HEB stores to last us 2 entire days (that was SO a God thing), seated 160 people for the musical, and had enough BBQ to feed cast, crew and audience.
We must have been on genius pills or something... Here's some pictures from the dress rehearsal, the day before.
We must have been on genius pills or something... Here's some pictures from the dress rehearsal, the day before.
7/17/08
more psalty stuff
Here's a very bad picture of the stage flats we are painting. Last Saturday we had a 4 hour musical rehearsal at our house and while the kids were practicing, most of their dads stayed for the morning to build these great flats for us. There's 5 of them, and they're all 8ft x 4ft. We are so thankful for our church men who built these for us, because we're not too good at that sort of thing. :) When they were finished, we got to work painting them to look like the inside of a barn. Some of the crafty, artsy ladies from church came over on Monday to help us paint (and to break our trampoline...) and we'll hopefully have these completely finished within the next two or three days.
With 30 kids ages 4-12, rehearsing a 60 minute musical gets confusing. From week to week, the smaller kids forget where they're supposed to be, what group they're supposed to sing with, or who their partners are for certain songs. As the director, I was losing my mind trying to tell the kids over and over again what group they're in, where to stand, etc. So the girls and I made these nifty little posters that have every scene and every song drawn out, including our curtain call at the end. We've blocked out each scene and labeled where each child is so that there is no confusion as to where anyone is supposed to stand. :)
A few shots from mine and Beth's room these last few days. Lots of crafts going on...we're making props, cards, posters, costumes, etc.
And here's a sneak preview of 3 out of the 5 book costumes! These are our 3 booklets...Melody, Harmony, Rhythm. These are all handmade by COG people. Once the bodies were assembled and glued together, they were brought over here where we've done all the ribbon, names, and the decorating is still happening as we speak. My goal is to have all 5 books finished by this weekend.
So...yeah. If you were doing this stuff, you wouldn't be blogging either! ;)
With 30 kids ages 4-12, rehearsing a 60 minute musical gets confusing. From week to week, the smaller kids forget where they're supposed to be, what group they're supposed to sing with, or who their partners are for certain songs. As the director, I was losing my mind trying to tell the kids over and over again what group they're in, where to stand, etc. So the girls and I made these nifty little posters that have every scene and every song drawn out, including our curtain call at the end. We've blocked out each scene and labeled where each child is so that there is no confusion as to where anyone is supposed to stand. :)
A few shots from mine and Beth's room these last few days. Lots of crafts going on...we're making props, cards, posters, costumes, etc. 
And here's a sneak preview of 3 out of the 5 book costumes! These are our 3 booklets...Melody, Harmony, Rhythm. These are all handmade by COG people. Once the bodies were assembled and glued together, they were brought over here where we've done all the ribbon, names, and the decorating is still happening as we speak. My goal is to have all 5 books finished by this weekend. 
So...yeah. If you were doing this stuff, you wouldn't be blogging either! ;)
7/16/08
we can sleep when we're dead
Believe it or not, I do have some good excuses for my blogging hiatus. Life in our house has been absolutely insane these last 6 weeks. For 3 weeks straight, we have had/will have people in our house every single day. Whether it's for Bible study, Family Dinner Nights, Theology Question nights, Psalty rehearsals, craft days, game nights, or just because they have nothing else to do, families from church have been here every single day and we will continue to have people here every day until the end of the month. None of this is a bad thing at all. We LOVE having people in our home, especially our church family, because, well, we love them. But it has kept us pretty busy, which I will use as Excuse #1.
Dad and Mom have spent years building up their reputation as friendly, loving, hospitable people. Any woman who walks inside is treated like a daughter and sister, any man like a son and brother, and any children like grandkids. Everyone who knows my parents know that our doors are always open, our table always has room for more plates, our rooms always have an extra bed, and kitchen always has room for one more handwasher. :) One of my good friends was over here a few days ago and of course, other people were coming and going as well. She told me how cool it was that all these people knew they could just come in...no knocking necessary, no invitation required.
And come in they do. Tonight we had around 85 people here, and smaller groups will be here every day for the next 2 weeks. The main reason we've had so many people in and out is because we are a week and a half away from our children's Psalty musical! Beth, Shelley and I are directing it and if I'm allowed to say so, it's going to be completely awesome. We have 30 kids in the production, a few adult actors, and a team of about 15 teenagers and young adults that we've recruited to help us backstage and in the sound booth. Because we don't have a church building, we're renting a theater building from a private school for the performance. We're only allowed to have it for one day, so most of our rehearsals have had to be on our deck which is the closest we can come to simulating the actual stage. We've had practices at our house at least once but sometimes twice a week and some have lasted up to 5 hours. And in San Antonio heat, it's not the funnest (Warren word) thing in the world. Our kids have been terrific though. They are working hard, despite the heat, and their musical is coming together nicely.
When I'm not directing rehearsals with 40-something people, the girls and I are spending the rest of our time making tons of props, making lists and schedules, sending out endless emails and making tons of phone calls, decorating 5 huge book costumes (this is Psalty, afterall), building and painting the enormous stage flats, blocking scenes and making posters, doing silly dances in our room to iron out the choreography, making countless trips to Lowes, Target, and Hobby Lobby for supplies, and basically eating, breathing, and living all things Psalty. (This is Excuse #2.) The reason we have not gone completely insane is because we have fabulous people helping us with all that, and I am very happy to delegate jobs and projects to willing parents and teenagers so I don't have to worry about everything.
I've taken alot of pictures of the whole process and was going to post them, but I'm on a slow computer that won't let me. I'll try again tomorrow so you can see the book costumes, the flats, our adorable kids, and our great helpers.
If you live anywhere in Texas, you NEED to come see our Psalty musical!! Our sweet kids have been working so hard for 7 months and it will be one entertaining night! I can't wait to see them put together everything they've learned and sing and dance their hearts out. Oh, and Shelley will be wearing a huge 10 pound yellow book costume. Who DOESN'T want to see that? :) Let me one of us know if you can come and we'll give you directions.
Covenant of Grace Church Presents
Psalty's Funtastic Family!
Saturday, July 26, 4pm
Dad and Mom have spent years building up their reputation as friendly, loving, hospitable people. Any woman who walks inside is treated like a daughter and sister, any man like a son and brother, and any children like grandkids. Everyone who knows my parents know that our doors are always open, our table always has room for more plates, our rooms always have an extra bed, and kitchen always has room for one more handwasher. :) One of my good friends was over here a few days ago and of course, other people were coming and going as well. She told me how cool it was that all these people knew they could just come in...no knocking necessary, no invitation required.
And come in they do. Tonight we had around 85 people here, and smaller groups will be here every day for the next 2 weeks. The main reason we've had so many people in and out is because we are a week and a half away from our children's Psalty musical! Beth, Shelley and I are directing it and if I'm allowed to say so, it's going to be completely awesome. We have 30 kids in the production, a few adult actors, and a team of about 15 teenagers and young adults that we've recruited to help us backstage and in the sound booth. Because we don't have a church building, we're renting a theater building from a private school for the performance. We're only allowed to have it for one day, so most of our rehearsals have had to be on our deck which is the closest we can come to simulating the actual stage. We've had practices at our house at least once but sometimes twice a week and some have lasted up to 5 hours. And in San Antonio heat, it's not the funnest (Warren word) thing in the world. Our kids have been terrific though. They are working hard, despite the heat, and their musical is coming together nicely.
When I'm not directing rehearsals with 40-something people, the girls and I are spending the rest of our time making tons of props, making lists and schedules, sending out endless emails and making tons of phone calls, decorating 5 huge book costumes (this is Psalty, afterall), building and painting the enormous stage flats, blocking scenes and making posters, doing silly dances in our room to iron out the choreography, making countless trips to Lowes, Target, and Hobby Lobby for supplies, and basically eating, breathing, and living all things Psalty. (This is Excuse #2.) The reason we have not gone completely insane is because we have fabulous people helping us with all that, and I am very happy to delegate jobs and projects to willing parents and teenagers so I don't have to worry about everything.
I've taken alot of pictures of the whole process and was going to post them, but I'm on a slow computer that won't let me. I'll try again tomorrow so you can see the book costumes, the flats, our adorable kids, and our great helpers.
If you live anywhere in Texas, you NEED to come see our Psalty musical!! Our sweet kids have been working so hard for 7 months and it will be one entertaining night! I can't wait to see them put together everything they've learned and sing and dance their hearts out. Oh, and Shelley will be wearing a huge 10 pound yellow book costume. Who DOESN'T want to see that? :) Let me one of us know if you can come and we'll give you directions.
Covenant of Grace Church Presents
Psalty's Funtastic Family!
Saturday, July 26, 4pm
5/30/08
we're off
So we're off to Mexico! Nathan and I have the suburban loaded down with suitcases, pillows, sleeping bags, and lots and lots of DrPepper. The 6 of us will be driving, parent-less, to the border and we are praying we can cross border patrol with no problems. We also hope that the agents will not notice that Beth's birth certificate is not an original copy. We'll be filling up the 6 road trip hours with singing, trivial pursuit (in which I will kick everyone's butts), and most likely discussing theology and politics because we're nerds. Mom is home alone, pray for no more flooding!
5/28/08
a flood
Our house flooded today. Dad's gone, which of course means bad things will happen. These pictures were taken after we'd soaked up over half of the water. It flooded half of the the first floor of our house and in some places the water was ankle deep. Thank God, once again, for Dirk who came to save us. I wonder if he ever gets tired of saving us when Dad is gone...
5/27/08
catch up
It's been a while. I'm not the best blogger in the world. My mom intimidates me with all her posting and I feel I will never measure up...
Ok, not. I'm just busy. Like everyone else in the world. We are super busy getting ready for the mission trip to the Mexico border. We're leaving on Friday! Dad and Mom aren't going with us, so it's up to me to get all 6 of us ready for a week in the heat, dirt, and humidity. Our friend, Blair, and I are in charge of all the meals while we're down there. This means cooking and serving 3 meals a day for 6 days for 50+ hungry people. It also means doing all the menu planning, grocery shopping, and some meal prep before we leave on Friday. I thought it would be easy because we're both really good in the kitchen (if I may say so) but it ended up being more of a challenge than I expected. It's not easy finding meals that are easy to make in bulk, don't include too many perishable ingredients, will be healthy and filling for people who are doing physical labor, cost effective, and will appeal to babies all the way to grandparents. The good thing is, I'm good at cooking in large quantities. I always say that I'll never get married because I don't know how to cook for 2 people...only 40.
Today I've been setting up my brand new cell phone. !! We've had our old, cheap phones for several years and 5 of us have had the exact same phone. The phones were falling apart after a few months and really should have been replaced right then. But AT&T wouldn't let us get new phones till this month and this time we all got different phones. Of course Mom didn't get one because she's already cool with an iPhone. Here's the one I got...
And here's the picture that Abby took of Sam and me today with my new phone. Pretty good for a camera phone, right?
Summer school starts on June 10 and I sure am enjoying the break. Even though I'm busy, I'm not busy with school which is nice.
In medical news, well there's no news. My neurologist is conveniently on a long TDY so I haven't been able to get in to see him. Normally, I'd be fine with that because I don't like him but since I am running out of time with my insurance, it would be nice if he makes it back into town soon. I've had a few bad weeks in a row as far as pain, nausea, and dizziness go and I haven't been able to feel my hands and face for about two weeks. I am always always always extremely sensitive to lights and sounds but it's gotten alot worse during this bad spell. I've been in a perpetual bad mood because everything but complete quiet and darkness makes me hurt like none other. It hasn't been very pleasant to be around people who make noise or to have my eyes open between 7am and 10pm. I'm really praying this cycle ends quickly...I have too many other things to think about.
My spellchecker just told me that "friend" isn't a word. I had to go look it up on dictionary.com to make sure I wasn't going crazy. It is, so far, still a word.
Ok, not. I'm just busy. Like everyone else in the world. We are super busy getting ready for the mission trip to the Mexico border. We're leaving on Friday! Dad and Mom aren't going with us, so it's up to me to get all 6 of us ready for a week in the heat, dirt, and humidity. Our friend, Blair, and I are in charge of all the meals while we're down there. This means cooking and serving 3 meals a day for 6 days for 50+ hungry people. It also means doing all the menu planning, grocery shopping, and some meal prep before we leave on Friday. I thought it would be easy because we're both really good in the kitchen (if I may say so) but it ended up being more of a challenge than I expected. It's not easy finding meals that are easy to make in bulk, don't include too many perishable ingredients, will be healthy and filling for people who are doing physical labor, cost effective, and will appeal to babies all the way to grandparents. The good thing is, I'm good at cooking in large quantities. I always say that I'll never get married because I don't know how to cook for 2 people...only 40.
Today I've been setting up my brand new cell phone. !! We've had our old, cheap phones for several years and 5 of us have had the exact same phone. The phones were falling apart after a few months and really should have been replaced right then. But AT&T wouldn't let us get new phones till this month and this time we all got different phones. Of course Mom didn't get one because she's already cool with an iPhone. Here's the one I got...
And here's the picture that Abby took of Sam and me today with my new phone. Pretty good for a camera phone, right?
Summer school starts on June 10 and I sure am enjoying the break. Even though I'm busy, I'm not busy with school which is nice.
In medical news, well there's no news. My neurologist is conveniently on a long TDY so I haven't been able to get in to see him. Normally, I'd be fine with that because I don't like him but since I am running out of time with my insurance, it would be nice if he makes it back into town soon. I've had a few bad weeks in a row as far as pain, nausea, and dizziness go and I haven't been able to feel my hands and face for about two weeks. I am always always always extremely sensitive to lights and sounds but it's gotten alot worse during this bad spell. I've been in a perpetual bad mood because everything but complete quiet and darkness makes me hurt like none other. It hasn't been very pleasant to be around people who make noise or to have my eyes open between 7am and 10pm. I'm really praying this cycle ends quickly...I have too many other things to think about.
My spellchecker just told me that "friend" isn't a word. I had to go look it up on dictionary.com to make sure I wasn't going crazy. It is, so far, still a word.
Subscribe to:
Posts (Atom)
