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!"
11/12/08
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!!
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