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... :)
3/26/09
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.
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